Diary
Jehovah-Shalom
"Giver of Peace"
Life After...
Jan 4, 2009
JJ
http://www.youtube.com/watch?v=Jmr1MOGT9fk
Jan 2, 2009
The New Year
We have started a new year; a symbolic time that life can start
fresh and that the ugly things from the year before can magically
disappear.
Sorry to tell you that in this plane of existence, it doesn't work
that way. "Cancer kids" are still followed by their doctors and
families who have had a loved one pass on, still mourn.
But the hope for things new remain.
So we put away the ornaments and decorations of Christmas, even
while we hope that its spirit of giving and love continues to live
in our hearts. We clean out the remains of whatever didn't get eaten
to make room for the "everyday" things, often forgetting that each
"everyday" is new. Every day we can hope for things new. Every day.
Every day we hope for our future and that of our children - knowing
that someday there will be a time when the ugly things from the
years before DO disappear and we wonder if it will be in this new
year.
God will wipe every tear from their eyes. There will be no more
death or mourning or crying or pain, for the old order of things has
passed away. Revelation 21:4
But until then...
http://www.youtube.com/watch?v=cXKmYh4PJhs
http://www.youtube.com/watch?v=wb136OkWQ78
Nov 26, 2008
While it may seem REALLY strange to think of any life-challenging
diagnosis as containing a blessing - our family has been graced to
be able to see beyond the devastation in our home that came fully
when JJ passed, to that which was given us.
So, in an effort to recognize that for which we are thankful, here
goes.
Each other - Jim, Di, JJ, Nikki & Matthew
The Rest of the Family - both sides - extended and extendeder
Friends - Those who already were and those who became
Strangers - Those friends whose names we don't know
Technology - What? Yep. Our ability to share this experience with
those who care and those who need to hear.
The Survival Basics - Food, Clothing & Shelter
The Not-So-Basics - Everything else
Each Other - I said that, but I can say it again, it's my list
Memories - Most good, some not so good, but all ours (and we'd like
to
know yours)
The Trinity: God, the Father; God, the Son; God, the Holy Spirit -
without which this list would not exist; there
would be nothing good in this life and nothing to
look forward to in the next
Faith/Grace/Peace/Love - again, all of these come from God and allow
us
to get up and live our lives here until we are
called Home
1 Thessalonians 5:18 - Give thanks in all circumstances, for this is
God's will for you in Christ Jesus.
Nov 23, 2008
Awareness Tree
Smiles For Sophie Forever Pediatric Brain Tumor Awareness Tree
This holiday season we are creating an "awareness tree" to raise
awareness about pediatric brain cancer, which is part of our
foundation's mission. We have allocated $100 for this tree and will
it will be on display in a medical building in Westlake Ohio.
The idea is to decorate different colored ornaments with the names
of those children afflicted (fighting and deceased) and their
diagnosis. So if you would like your child to be included on this
tree, please email the following info by December 4th to
emily@smilesforsophieforever.org.
child's name age diagnosis date of diagnosis (and date
of death if appropriate)
We will take a picture of this rainbow/gray ribbon tree for you to
see, we would like to try and give these ornaments to each family
after the holiday season. Please include your mailing address if you
would like your ornament sent to you. There is no required cost,
but we are always accepting donations.
Nov 10, 2008
Tumble of Puppies
JJ first played T-ball when he was 4. This was the first team sport
that he and many of the others had played, so the concept of only
one person fielding the ball had never been addressed. What happened
then is common - worldwide - everyone in the outfield (and some new
infielders) tackle the ball and each other. When I saw this I was
put in mind of a litter of pups, all crawling over and under each
other and I started calling this effort to retrieve the ball a
"tumble of puppies".
This phrase came to me again last night at bedtime. Nikki had
decided that she wanted to sleep on our bed and we tried to keep her
under the blankets. Minutes later the sound of Matthew's little feet
came thru the house - he had woken up and beelined in our direction.
Jim told Nikki she could move down and sleep on his legs (her
favorite spot to curl up) so that there would be more room for
Matthew to toss and turn in between us. Matthew climbed up on the
bed to put his head on my shoulder and his feet on Jim.
Periodically, he would sit up and keep trying to find a more
comfortable way to lay down eventually circling around to end up in
the same spot he had left. So, with all the spinning and clambering
and layers of bodies on our bed last night, I thought back to those
days before...and felt like I was in a tumble of puppies.
Oct 19, 2008
3 Years
Three years ago today we were given the worst news one could be
given as today marks the day JJ was diagnosed. I've not much to say
about that other than I will continue to pray that no other family
is given such news and that no other child has to suffer the effects
of a brain tumor. I still visit JJ on a daily basis and I do have
one other thing to say but I doubt the person this is addressed to
will read this. Just the same... to the person who feels the need to
steal from a six year old a bit of advice. If I see you taking items
from JJs resting place, run south as fast as you can. There is a
police station about 200 yards away and you can find refuge from me
there. If I catch you and you manage to get away from me, run an
additional 50 yards south to the fire station. You will find the
paramedics there and they will be able to assist your medical needs.
Jim
Oct 9, 2008
Broken Dreams
http://www.youtube.com/watch?v=RnYlQKaNLXY
Aug 29, 2008
New Video
Got the itch to put together another video.
http://www.youtube.com/watch?v=GUkqGzqMrMY
Hope all understand that the video is structured to the words of the
song and it is not my intent to exclude any child from the
recognition they deserve. I love them all.
Jim
Aug 14, 2008
Back To School
Some of the activities of Fall have begun, others will start in
pretty short order: school, gymnastics, religious education, dance,
mom groups, and so on. I guess the difference between summer
activities and school-year stuff is frequency - during the summer
it's every day for a week, now for most things it's once a week
until summer.
Nikki and I enjoyed a "girl's adventure" last week to close out
vacation time. We dropped Matthew off with his Alabama relatives and
she and I headed to South Carolina for Katie's services. When we
weren't celebrating Katie's life, Nikki and I went shopping, to the
movie, played at Chuck E. Cheese, and had some pool time.
I transfered these carepages updates to www.jjsmiracle.com (Feb to
now) and one in particular caught my eye. It was from March when
Nikki had a run-in with a stomach bug - she was doing things very
much like JJ did, gently - and it made me glad, again, that we have
chosen to continue posting updates of our family's life, as without
them details like that could easily slip away.
Aug 2, 2008 10:51am
Family
I'm sure there's a very precise definition of the word family - but I don't care about that one right now. I'm talking about the definition that allows you to be a "family" in non-traditional circumstances.
We spent some time at NIH and The Children's Inn with JJ. During that time we were blessed to encounter people with whom we are still in contact. Some of those people became our "Inn Family"; the kids ran around together, the parents talked, we ate together. We became family.
Katie Krize, a member of our Inn Family, went Home yesterday. She left the arms of her parents and was welcomed by the Lord. I can't tell you whose smile was brighter.
http://www.caringbridge.org/visit/katiekrize
Jul 30, 2008 7:42am
As we address the topic of the Conquer Childhood Cancer Act of 2007 one more time, we would like to thank all of you for the time you took from your schedules to call, write and spread the word about legislation which can only help the most innocent among us.
I ask that you read the following lines.
H.R.1553
Latest Major Action: 7/29/2008 Signed by President.
Congratulations and Thank You.
Jul 26, 2008 1:11pm
Bear with me.
We are less than two weeks away from the Olympic Opening Ceremonies. I like watching the Olympics; there is a great deal of national pride, appreciation for the training endured and skills displayed by these men and women of the world.
Two of our three children were born near the time frame of the summer Olympics - JJ in 2000 (Sydney) and Nikki in 2004 (Athens). Matthew is the one who missed on both accounts, a non-Olympic year and in the winter.
I realized as I was looking at some of the Olympics pages, that I couldn't remember where the most recent games had been held. I knew that they were winter, but truly didn't remember having watched any of the coverage. (I can picture myself watching the 1984 Los Angeles games - so this lack of memory disturbed me.)
Apparently, the 2006 Winter Games were held in Turin, Italy from 10 - 26 February. Who knew?
During those two weeks, we posted on jjsmiracle.com 4 times - not once did we mention the Olympics (we did, however, mention the T-ball draft).
I guess the conclusion I've just reached is that the world stops for the Olympics, but the Olympics stop when you're fighting for your child's life.
May there be many years of Olympics for all of our children.
Jul 17, 2008 5:05pm
I need to start this update with special thoughts, prayers and intentions to Katie Krize. She is wonderful little lady who we had the extreme pleasure to get to know and love while at NIH. Katie does not have a DIPG but has been battling a neuroblastoma for about 8 ½ years. What strength, but time seems to be drawing near for her. I ask that you please visit her site and drop a line of love and encouragement. I know JJ is holding her hand and helping her prepare for her journey. Intentions to the rest of these beautiful children as well.
As for us? Wow, what a week. We left this past Saturday for a trip to Give Kids The World, where we had the honor of attending the opening dedication ceremony for “Matthew’s Boundless Playground”. The playground is designed after the game “Candyland” and is named in Matthew McGowan’s honor. It is wonderful. I’ll not say much about it as I believe it appropriate to allow the McGowan’s to describe such a wonderful place. While there, we also had the pleasure of seeing James Howell and his family. James just happened to be on his wish trip during this time. Also in attendance (and holding a dear place in our heart) were Alicia Martin’s mom and Brayden Breaux’s mom. We also had the opportunity to find JJ’s paving stone. We recognized several names of children we have become familiar with and are in the same grouping of stones. JJ is keeping some pretty good company with Matthew McGowan, Caleb Ingram, Brayden Breaux and Kate Hrishuk. Their stones are just a couple of yards from the famous “Ice Cream Palace”. I’m sure there are others but sadly, there are way too many names… While we were there, we threw in Tuesday at Magic Kingdom, of which Nikki, Matthew and yeah, mom and dad had a good time. We did breakfast with the McGowan’s on Wednesday before hitting the road. While north bound, I was called and offered a promotional step in the job. Wow, I guess some of the Disney magic was following us! I will be staying within the agency, just taking a slightly different line of work. Start in three weeks. Wait, the good news isn’t done. After a stop in Tallahassee for the night, I awoke and read that S-911 has passed the senate with no changes and by unanimous vote! Folks, the bills you all have been fighting, sweating and for which you have been lobbying for over a year has gotten through legislation…
Yesterday in Congress: Item 18. H.R.1553 : To amend the Public Health Service Act to advance medical research and treatments into pediatric cancers, ensure patients and families have access to information regarding pediatric cancers and current treatments for such cancers, establish a national childhood cancer registry, and promote public awareness of pediatric cancer.
Sponsor: Rep Pryce, Deborah [OH-15] (introduced 3/15/2007)
Cosponsors (229)
Committees: House Energy and Commerce
House Reports: 110-706
Latest Major Action: 7/16/2008 Cleared for White House.
There is no way the President will veto this piece of legislation. God bless you all. It was the combined efforts of those that care about the children that made this happen.
Jul 2, 2008 11:11am
Thank you to everyone who has picked up the phone to call DC. We know that you're making your voices heard as one of the staffers has asked how everyone has gotten his number. He did wish to get the word out that he's not the guy - so when you call Wyoming Senator Enzi's office, ask for Keith Flanagan - he's the health staffer (at least until he gets tired of checking his voice mail and hands the responsibility for S-911 to somebody else).
You're all doing a great job.
di
Jul 1, 2008 12:18pm
Everyone, I am in need of your help.
I have gotten some pretty sound advice from someone who used to work on Capitol Hill as to how we need to proceed in getting S-911 moving. Word has it that there are three Senators who have placed “a hold” (another story into itself) on this bill. If true, what we need to do is call their offices. I have made these calls and, lo, each health staffer was either out of the office or in a meeting and I was referred to voice mail.
The person I talked to stated “its sounds like they’re ducking you” and recommended a letter to the editor of the local papers within their states. I asked if I should first pass on this info to others and here’s his reply…
Flooding them with calls can also be a good attention getter. I'd suggest your callers follow your lead and also call for "I Could Be Your Child." However, know that the staffers have caller ID. In addition to calling DC you may also want to have callers reach out to the various state offices. When state offices get a lot of calls on an issue they'll often make a member or senior staff aware and that might help, too. Good luck."
Here’s where I need your help… before I go and write a letter, I would like to be able to back up my words with numbers. I need as many of you as possible to call the offices of Senators
Coburn (Oklahoma) ~ 202-224-5754. Health Staffer: Evan Feinberg.
Kyl (Arizona) ~ 202-224-4521. Health Staffer: Brain Polick
Enzi (Wyoming) ~ 202-224-3424. Health Staffer: Dave Shmelke
Be very polite and simply ask “what is the Senator’s position is on S-911”. When I called, they asked where I was calling from. My reply was “For I Could Be Your Child, a grass roots organization on Pediatric Brain Tumor Awareness…”. As suggested above, it might be beneficial if you use something similar that best fits the foundation you most support. Chances are, they’ll duck you as well and you’ll get voice mail. If so, please let me know the dates and times you called as well as if you received a call back (which I have not had yet) or not. I’ll give them a week or so and once I get a good solid number where it shows that they have no intentions of returning our calls or giving us the information requested, I’ll draft the letter.
It would be extremely beneficial if citizens from these three states called. The Senators may be able to duck those of us not from their state but will have a difficult time explaining why they won’t answer to their own constituents. So, if anyone happens to know someone from there, please pass this on.
Thanks,
Jim
Jun 21, 2008 8:31am
Wow, I hadn't realized it had been so long.
This past week, especially, has been a busy one. Vacation Bible School all morning with swim class for Nikki in the afternoon; we are all exhausted.
Nikki is now old enough to be in a preschool VBS classroom instead of the nursery. She was toted around all week by pre-teens, teens and adults. She had been practicing the songs (and the arm movements that went with them) and was doing a great job, until the finale. She sat right in front of Jim and didn't do a thing.
Matthew actually stayed in the nursery this year - last year the VBS director wouldn't let him go to the nursery (at 5 months old he was the perfect size and temperament to stay with her and get passed around between more adults and teens).
This is our family's fourth year involved with VBS at St. John's and I look forward to it every year. I enjoy being with the moms who are involved and recognizing the kids as they grow. The youth who volunteer are incredible and are a big part of why I enjoy spending my time with this ministry.
JJ's first year at VBS was in one of the preschool classes and it was the summer right before he was diagnosed. The next year he was a big kid and was in one of the crews (small traveling bands of children with a teenager to stay with them and keep control). At the meeting 4 days before VBS started, I told the director of JJ's diagnosis - she immediately switched him to the crew of a teen with whom she was well acquainted (her son). I told the young man that JJ was sometimes a bit on the shy/quiet side, but if Christopher could make him laugh then JJ would follow him anywhere. All week when we got home, Jim would hear what the "Goofy Guy" had done that day. They were perfect together.
In VBS tradition, Thursday is the day we focus more closely on Jesus' sacrifice. In St. John tradition, it is the day we also bring the children's attention to Patron Saints. That list now includes Saint JJ, Patron Saint of St. John's VBS. He serves as a reminder to all that no matter your age, you can have a lasting impact on others; that even when life isn't easy, you can continue to have confidence in God; and that when your life on Earth has ended you can have the assurance of living forever with Him. I, too, want to be like JJ.
This remembrance of our son truly touches our hearts.
2 Timothy 2:1 You, therefore, my child, be strong in the grace that is in Christ Jesus.
Jun 12, 2008 12:36pm
Rich McGowan forwarded me the following...
H R 1553 2/3 YEA-AND-NAY 12-Jun-2008 12:24 PM
QUESTION: On Motion to Suspend the Rules and Pass, as Amended
BILL TITLE: Conquer Childhood Cancer Act
Democratic 225 - Yeas 0 - Nays 9 - Not Voting
Republican 191 - Yeas 0 - Nays 8 - Not Voting
TOTALS 416 - Yeas 0 - Nays 17 - Not Voting
Unless I read this wrong, the bill you all have campaigned for has passed the house. Pat yourself on the backs folks, you did this.
It should now go to the Senate for consideration. Halfway home...
Jun 6, 2008 12:45pm
Take Two.
Summer is in full swing; since the last post have been trips to Montgomery, Mississippi and Louisiana.
The trip to MS clearly pointed out that Nikki is my beach baby and Matthew need never set foot on sand again. (see the pictures as evidence)
They are both learning and maturing - it's a wonderful thing to see. But then Matthew starts screeching like a flying dinosaur (you know the one, please don't make me misspell it).
I have been wondering what it's like for the kids who have been Lifted Up. Are we like a television set that's usually on for background noise? They don't pay us any mind until something grabs their attention. Can they change the channels? Mom's at the computer again, what's Daddy doing? Nope, he's at the computer, too, what are my friends up to? Can they carry us around in a Blackberry with wireless access down at the River of Life?
Just wondering.
There are many families who continue to need your prayers; those who have lost a child or who have been told they're probably going to. Please remember them in your conversations with the Lord.
Genesis 18:14 Is anything impossible for the Lord?
May 18, 2008 4:28pm
It's Summertime!
Pre-school is over, Sunday School classes are over, dance class is over, gymnastics is over.
Nikki had her dance recital last night and was wonderful! Quite the change from last year when she stood completely still on the stage (I like to say she didn't miss a step). We are incredibly proud of her.
I like to think that with Summer here, we'll slow down some, but then I look at the calendar and see activities for a week at a time.
Jim has made it easier for me to sort thru the stuff in the garage, he has set up shelves and gotten virtually everything off the floor.
I realized yesterday that 1 year ago was when Matthew first rolled from his back to his belly. Less than a year later, my little monkey is climbing into his high chair, onto the kitchen table and into the kitchen sink. Wow.
The Creekside Kindergartners have buried a time capsule - included was one of the Relay shirts. I can only hope that when it next sees daylight, there will be no need to have a Relay for Life.
Visits to JJ currently give your nose a foresmell of Heaven. The honeysuckle vines are in full bloom as are many other flowers and plants.
Colossians 3:2 Set your minds on what is above, not on what is on the earth.
May 9, 2008 5:23am
two messages this morning.
Since I wasn't sure what this latest action was on HR 1553, I figured to read a little more.
I've shortened it to just 1553 but here it is, straight from the the committee on energy and commerce... http://energycommerce.house.gov/Press_110/110nr260.shtml
Committee Approves Three Critical Public Health Bills
H.R. 1553, the “Caroline Pryce Walker Conquer Childhood Cancer Act of 2008,” would advance medical research and treatments into pediatric cancers, ensure patients and families have access to the current treatments and information regarding pediatric cancers, establish a population-based national childhood cancer database, and promote public awareness of pediatric cancers. An Amendment in the Nature of a Substitute, offered by Rep. Hilda Solis (D-CA), was approved by voice vote and would ensure that the public awareness provisions will be culturally and linguistically appropriate for patients and families. The amendment also changes the short title of H.R. 1553 in memory of Rep. Deborah Pryce’s nine-year-old daughter, Caroline, who lost her battle against a rare for of cancer called neuroblastoma on September 4, 1999.
Jim
May 9, 2008 5:10am
Most recent on the bills...
S-911 has gained an additional co-sponsor and I actually got a carpet burn on my chin when I saw who it was...
Sen Sessions, Jeff [AL] - 5/8/2008
Number now stands at 62.
HR 1553 continues to also gain support.
Rep Petri, Thomas E. [WI-6] - 5/1/2008
Rep Carson, Andre [IN-7] - 5/1/2008
Rep Meeks, Gregory W. [NY-6] - 5/6/2008
Bringing the number to 223.
1553 has also seen further action in committee.
Latest Major Action: 5/7/2008 House committee/subcommittee actions. Status: Ordered to be Reported in the Nature of a Substitute by Voice Vote.
I also want to thank JJ's Aunt Cheryl for doing a very strong video to bring awareness to the kids. If you the desire...
http://www.youtube.com/watch?v=eSHYZt1xFQ4Nicely done Sis.
May 3, 2008 2:06pm
Today was first communion for the second graders. In the accepted order of things, JJ would have joined his friends for this first meal of unleavened bread and wine at the Lord's table. In God's plan, however, he has been feasting on the abundance of Heaven with the Lord himself for almost a year and a half.
Our church family recognized this with an insert in the Order of Mass keepsake program. On green paper, firmly secured is this: How very softly you tiptoed into our world. Almost silently, and for only a moment you stayed. But what an imprint your footsteps have left upon all of our hearts. With special remembrance of our friend, our brother, our son. JJ Lipski St. John's First Communion Class of 2008
Thank you.
May 1, 2008 4:11pm
H.R. 1553, the “Conquer Childhood Cancer Act of 2007”, was favorably forwarded to the full Committee, amended, by a voice vote.
The following amendment was offered:
An Amendment in the Nature of a Substitute offered by Mr. Pallone, #1, was adopted by a voice vote.
http://energycommerce.house.gov/cmte_mtgs/110-he_markup.042308.shtmlOkay, so it's in committee. First baby step (but it is a step). Please stay on Ms Perlosi and Mr Dingle as well as all the reps.
May 1, 2008 2:36pm
Latest.
Dropping an update on S-911 and HR 1553.
Both bills continue to gain support.
S-911 is at 61
Sen Collins, Susan M. [ME] - 4/29/2008
HR-1553 is up to 220.
Rep Wilson, Charles A. [OH-6] - 4/22/2008
Rep Murphy, Tim [PA-18] - 4/22/2008
Rep Bean, Melissa L. [IL-8] - 4/24/2008
Rep Sherman, Brad [CA-27] - 4/29/2008
Rep Kirk, Mark Steven [IL-10] - 4/29/2008
I would like to thank everyone for contacting your elected officials. Please stay on them. Now, why did I say that? Because folks, they're listening to you!
HR-1553: Latest Major Action: 4/23/2008 House committee/subcommittee actions. Status: Subcommittee Consideration and Mark-up Session Held.
Not sure what all this means but the bill is being addressed!
Stay on them with the e-mails, letters and phone calls.
Jim
Apr 26, 2008 3:09pm
AveryAnn has joined so many others in our Lord's Home. I'm sure the joy in her 100 watt-smile was nothing compared to the light in His.
Posted Apr 26, 2008 9:43am
Relay is over for this year. The event raised more than $100,000. Thank you to all who support the efforts for a cure - it doesn't matter whether it's thru St. Jude, ACS, pennies for whatever, it all counts. Thank you also to those who were able to find parking spaces when they dropped by. Years from now, when Nikki & Matthew are able to read this - thank you both for being fabulous while we were setting up the site. You make it easy to do things like this.
I'm sure there's more, but I can't think right now, so it'll have to wait.
Apr 24, 2008 8:18am
As is too often the case, there's a little girl and her family who are in need of your prayers. Avery Ann Hildreth is a little scrapper who is currently in the ICU at Children's Hospital. Her doctor has nothing more to offer. www.averyann.net
Apr 22, 2008 7:32am
S-911 now has 59 Senators that have signed up as co-sponsors.
Sen McCaskill, Claire [MO] - 4/17/2008
Sen Allard, Wayne [CO] - 4/17/2008
Sen Warner, John [VA] - 4/21/2008
Add in the Sponsor and that is 60. What’s that mean??? The Conquer Childhood Cancer Act of 2007 is not just a possibility. It IS within grasp. If the Senate so chooses, they can now introduce this legislation before Congress with the knowledge and security that any veto attempt can be overridden. That's BIG. No favors have to be called in for a vote and is basically, very good insurance that the legislation can go forward. What usually happens is, if a bill gets through one of the two, the other side of the aisle usually follows (especially since both sides are controlled by the same party). In a nutshell, this bill has the necessary declared support from your Senators TO BECOME LAW. You, the people, have spoken and your elected officials in Washington have taken notice. Folks, we’re close but there is still work to do. This bill still sits on the legislative calendar with no further action so I ask that you continue to contact your Congressmen and Senators and even more so, contact the Senate Majority Leader Harry Reid. He is the one that decides what bills come to the floor for debate and action. As he is a co-sponsor, I cannot see why he would not act. Please contact him…
528 Hart Senate Office Building
Washington, DC 20510
Phone: 202-224-3542 / Fax: 202-224-7327
and ask him to bring this very important piece of legislation to the floor and get it passed. Remind them that there are now enough declared votes to ensure passage of the bill.
HR 1553 is at 215.
Rep Carney, Christopher P. [PA-10] - 4/16/2008
Please, contact the Speaker of the House Nancy Pelosi.
http://speaker.house.gov/contact/Ask her about the status of HR 1553 and inform her about the mirror legislation (S 911) and what’s happening on the Senate side. Inquire why HR 1553, with 215 co-sponsors remains in sub-committee with no action taken.
We are very, very close…
Apr 18, 2008 6:40am
Just a note to those of you who live in the Madison, AL area. Today, Little Ceasar's on Hughes Road will be donating a portion of the purchase price of a large pizza to the Creekside/East Limestone Relay for Life team. The question, "What's for dinner?" has been answered. (Pretty helpful, huh?)
Apr 15, 2008 7:00am
Good morning all. A gentle reminder that if you have not completed giving Uncle Sugar his cut of your wages, today is the day to do so. I know that taxes are the necessary evil in this world but sometimes I wonder why. But hey, the organization is now exempt so if you wish or desire a deduction, we'll be happy to assist you in assisting the kids. :c).
We have also coordinated with "Good Search" and are now on their page. If you are unaware, this is a web based search engine (like google) but the difference is, this organization gives back to charities. For every search you do through them, they give the charity of your choice one cent. I know, it may not sound like much but if all that visit our site and do a couple of searches a day, it can add up. If you the desire... please go to "Goodsearch.com" and in the second block where it says "who do you good search for", type in "I Could Be Your Child". It should come up with the (Madison, AL) behind it. That's it. Your all set. Do a search and the penny is on it's way to the kids. They do ask, and I understand, not to abuse the system, but if you happen to need a search of the web...
Both bills have not moved but an additional 3 representatives have signed up for HR 1553 and stands at 214.
Rep Miller, Jeff [FL-1] - 4/9/2008
Rep Boren, Dan [OK-2] - 4/14/2008
Rep Loebsack, David [IA-2] - 4/14/2008
Please contact the following and inquire why this legislation remains in committee.
Pallone ~ (202) 225-4671 ~ http://www.house.gov/pallone/
Dingell ~ (202) 225-4071 ~
http://www.house.gov/dingell/contact.shtml
Committee ~ (202) 225-2927 ~
http://energycommerce.house.gov/membios/contact_form.shtml
S-911 remains at 56.
Apr 9, 2008 4:45pm
What I need to remember is that by not updating the page, doesn't mean that we haven't lost another child. Katelyn Sherrard is now able to eat at Heaven's midnight buffet and not the hospital's. Please let her family know that they haven't lost the support you've been so generous about sharing.
I am going to thank those employees of the IRS (yes, the IRS) who were able to guide us through the paperwork requirements as we applied for tax-exempt authorization. I Could Be Your Child is now recognized by the US Federal Government as a 501(c)(3), tax-exempt organization. We are now a large step closer to raising even more awareness about pediatric brain tumors. With greater awareness, I hope that we are a step closer to a cure.
1 Corinthians 3:8 Now the one who plants and the one who waters are equal, and each will receive his own reward according to his own labor.
Apr 6, 2008 1:40pm
Just wanted to drop a quick post to let all know that there have been a couple more co-sponsors that have come on board.
S-911 is at 56
Sen Specter, Arlen [PA] - 3/31/2008
Sen Wicker, Roger F. [MS] - 3/31/2008
Sen Vitter, David [LA] - 4/1/2008
HR 1553 is also up to 211
Rep McCollum, Betty [MN-4] - 3/14/2008
Rep Biggert, Judy [IL-13] - 3/31/2008
Rep Emanuel, Rahm [IL-5] - 3/31/2008
Rep Wittman, Robert J. [VA-1] - 4/2/2008
No movement on either legislations.
I also ask that all please pray for Katelyn Sherrard as she is having a very difficult time right now as well as all the other children who are fighting with such courage.
Jim
Apr 3, 2008 3:11pm
On the days that the weather drives me inside, I find myself with too much time on my hands. The remembering and missing JJ is all the more active so alas, I once again share a video with you on my little man.
http://www.youtube.com/watch?v=Goi3gQV-4vkJim
Mar 25, 2008 7:51am
Last day to order T-shirts is this Friday, the 28th of March, please do so by noon CST.
This can be done thru the Gift Shop at www.icouldbeyourchild.org (donate) or if you prefer to send a check, please contact us at jjsmiracle@knology.net.
To the families who allowed us to include your child's name, a very heartfelt thank you.
2 Corinthians 4:8 We are pressured in every way but not crushed; we are perplexed but not in despair.
Mar 23, 2008 8:52am
Today, we celebrate.
We celebrate the new beginnings that our Lord Jesus has provided us. We celebrate, through his sacrifice, the forgiveness of sin and the opportunity to share, for all time, His love. We recognize and give thanks for this and so much more. Please take time out to remember and reflect His dedication to us...
I would also like to pass on some very wonderful news. Diana has always been a person of faith. She has always been very active in church activities but, as of last night, a very large leap was made. She has been recognized by and joined the Catholic Church. This leap was not made on a whim. It was something that she weighed very carefully prior to committing. There was no pressure or cajoling from myself or any other (that I know of). This decision was hers and hers alone. She studied and researched in excess of 7 months before making the confirmation. I am very proud of her and somehow feel that JJ played a very important role in making this happen.
May all have a blessed and wonderful Easter.
Jim
Mar 16, 2008 9:19am
I am including, again, the link to JJ's recent video, http://www.youtube.com/watch?v=uvs6ZN6QJZA.
Just a little clarification for ordering t-shirts, once you input your credit card information you will be asked to review (that will be on the second page). On that second page, near the upper left of the form, is "In Honor/Memory of", by clicking that, a notes box will drop down and shirt sizes can be indicated. Again, shirts are $18 for adults/$15 for children's sizes and add a dollar for the xtra-sized.
Something far more important than shirts has begun. It is Holy Week. The week which preceeds a sacrifice far greater than any of us deserve. The choice of the Son to abide by His Father's will so that we might all live again, forever.
I don't deserve the opportunity that was given me by Jesus' death on the cross - but I am blessed to be a child of a loving and merciful God. Are you?
Psalm 103:2-4 My soul, praise the Lord, and do not forget all His benefits. He forgives all your sin; He heals all your diseases. He redeems your life from the Pit; He crowns you with faithful love and compassion.
Mar 14, 2008 4:37pm
Very brief. Just wanted to pass on a little tribute I felt the need to do for JJ. Link is below and thank you all for checking in on us.
http://www.youtube.com/watch?v=uvs6ZN6QJZAS 911 has gained one more and stands at 53
Sen Salazar, Ken [CO] - 3/10/2008
and HR 1553 has also gained one to go to 207
Rep Brown, Henry E., Jr. [SC-1] - 3/6/2008
Jim
Mar 13, 2008 7:16pm
As happens far too often, we ask that you visit a couple of families who have just suffered a tremendous loss. Peter Barr and Rabekah Hicks have answered their personal trumpet call from the Lord and now stand in His Heavenly army of saints.
Today I was modeling the latest in Relay for Life gear - the initial order of Creekside/East Limestone t-shirts are in (please see the photo page). I know that some family members had expressed an interest in these and we will be placing another order. If you would like one (or more), prices are $15 for kid's sizes and $18 for adults (2x and above will be an additional dollar), you can go to www.icouldbeyourchild.org and on the Gift Shop page use the donate button, there should be a notes field where you can indicate the number of shirts and sizes. If this doesn't work for you, drop an email to jjsmiracle@knology.net with the same information and we'll get back to you with payment information.
I am, again, including the link to my Relay page, but feel free to find someone else's. http://main.acsevents.org/site/TR/RelayForLife/RelayForLifeMid-SouthDivision?pg=personal&fr_id=8825&fr_id=8825&px=2659505
We are but days away from Holy Week, and the following verse seems to cover it pretty well.
2 Corinithians 9:15 Thanks be to God for His indescribable gift.
Mar 6, 2008 12:00pm
As Diana has stated, I had a stomach bug. I thought I was better until I just got off the phone with a spokesman for the committee on energy and commerce. Once you get done talking to those fine folks, you find your gut in a knot again... nothing but the run around. Of course, no one in the committee or subcommittee was available to take my call but he made a small error and gave me the name of the staffer responsible for the bill. Everyone, please call......
202-225-2927 and ask for a Melissa Sidman. Chances are you'll get her voice mail but that is okay. Ask her a very basic question. Mine was... There are 206 co-sponsors in support of HR 1553 and I would like to know why the Subcommittee on Health has not addressed this piece of legislation? Remind them that there is a mirror bill (S-911) that has a majority of 52 co-sponsors. When they start giving you the run-around, remind them that a similar bill that was introduced in the 109th congress had the exact same action from the exact same committee with the exact same results as this one is giving. None. Nada. Zilch.
Sorry, I'm just slightly upset with these people who are so quick to remind me on the phone that they are soooo busy taking care of us. I guess taking care of the kids is not the same, huh? Yep, my gut is all knotted up again.
Okay, very briefly, 3 co-sponsors on board since the last update and now stands at 206.
Rep Blackburn, Marsha [TN-7] - 2/26/2008
Rep Frelinghuysen, Rodney P. [NJ-11] - 3/3/2008
Rep Inslee, Jay [WA-1] - 3/3/2008
S-911 has gained one more and stands at 52.
Sen Levin, Carl [MI] - 2/26/2008
Jim
Mar 6, 2008 7:03am
Welcome to the Bug Ball.
Jim started dancing with this particular creature Monday evening, while Nikki and I were off getting her antibiotics for an infection. Monday night at 10:30, she decided to join the festivities and, as she so delicately puts it, "spit" on my bed. 3 hours later, she was showered, pajamas changed a couple of times and the sheets were in the laundry. She and Jim kept time a little bit more on Tuesday, but by the end of the day both were coming along fine. Then 8:30, Nikki, who had been asleep, "spit" again - so, now her sheets went in. About 10:30, I start wondering if I'm going to do the same thing. Wednesday morning, I did.
Now, I have towels back on my bed with the full expectation that Nikki is going to need them - because she's going to get her antibiotic again this morning, after the day off yesterday, and I expect that within 2 hours, it will be back up. Nice, huh? Let's give the kid some medicine to see if she's allergic to it. At least with Chemo we were allowed to pre-medicate so JJ DIDN'T get sick.
One very cool thing about Nikki having been under the weather - I've seen some more of her brother coming out. He had the sweetest tiny smile and a way of reaching out his hand to touch your face, such gentle, loving words - and I saw all of those things in Nikki. She reached out to Matthew with that same hand and told him that she loved him. I'd sit with her on the bed and rub my hand over her hair and see the corners of her mouth tilt up so slightly. It was all so wonderful to see again.
Matthew has remained completely unaware of the infection, and I would like very much to keep it that way.
We remain hopeful that the IRS authorization is just around the corner, but know that the timing will be God's, not ours, and I'm ok with that.
Psalm 27:14 Wait for the Lord; be courageous and let your heart be strong. Wait for the Lord.
Feb 25, 2008 10:47am
I want to start this post with a special thank you to all those that check in on the children and their families. On 21 May 07, we made icouldbeyourchild.org active. On Saturday 23 Feb 08, the counter on “other kids” topped 100,000 visits. The counter on “lifted up” is at 61,298 and the home page is 72,284. For only 9 months active, these numbers are higher than I had hoped. I am deeply honored for your visits and grateful to each and every one of you out there that continue to care.
As to our family, we continue to learn and adjust. There are times when it seems easier and other times when it seems harder. Nikki has mentioned missing JJ more lately but seems to recover quickly. Matthew, continues to learn and grow at quite a rapid rate.
On to the bills… S-911 is up to 51 co-sponsors
Sen Durbin, Richard [IL] - 2/14/2008
It remains on the Senate Legislative Calendar under General Orders. Calendar No. 535
HR 1553 has also gained an additional 5 and stands at 203.
Rep Udall, Mark [CO-2] - 2/7/2008
Rep Cubin, Barbara [WY] - 2/12/2008
Rep Gillibrand, Kirsten E. [NY-20] - 2/21/2008
Rep Pastor, Ed [AZ-4] - 2/21/2008
Rep Nadler, Jerrold [NY-8] - 2/21/2008
It remains in the Subcommittee on Health with no action taken since its original referral. The lack of action of this subcommittee continues to puzzle me so I decided to take a closer look. This committee is sub to the committee on energy and commerce. It has jurisdiction on: Public health and quarantine; hospital construction; mental health and research; biomedical programs and health protection in general, including Medicaid and national health insurance; Food and drugs; and, Drug abuse. There are 33 members ~
Frank Pallone, Jr., NJ, Chairman
Nathan Deal, GA, Ranking Member
Henry A. Waxman, CA
Ralph M. Hall, TX
Edolphus Towns, NY
Barbara Cubin, WY
Bart Gordon, TN
Heather Wilson, NM
Anna Eshoo, CA
John B. Shadegg, AZ
Gene Green, TX, Vice Chair
Steve Buyer, IN
Diana DeGette, CO
Joseph R. Pitts, PA
Lois Capps, CA
Mike Ferguson, NJ
Tom Allen, ME
Mike Rogers, MI
Tammy Baldwin, WI
Sue Myrick, NC
Eliot L. Engel, NY
John Sullivan, OK
Jan Schakowsky, IL
Tim Murphy, PA
Hilda L. Solis, CA
Michael C. Burgess, TX
Mike Ross, AR
Marsha Blackburn, TN
Darlene Hooley, OR
Joe Barton, TX (Ex Officio)
Anthony D. Weiner, NY
Jim Matheson, UT
John D. Dingell (Ex Officio)
The following members of this subcommittee have signed on as cosponsors…
Waxman, Gordon, Eshoo, Green, DeGette, Capps, Allen, Baldwin, Engel, Schekowsky, Solis, Matheson, Hall, Cubin, Wilson, Ferguson, Myrick.
Staying within my fingers and toes at 17 but still more than half having declared their support of the bill through co-sponsorship. And yet it remains in sub-committee??? Well, I have written both Dingell (Chair, Energy and Commerce) and Pallone (Chair, Subcommittee on Health) but guess I don’t merit a response since neither has. I decided that calling would be a better course of action. Please join me in asking why they have done nothing to get this piece of legislation on the floor.
Pallone ~ (202) 225-4671 ~ http://www.house.gov/pallone/
Dingell ~ (202) 225-4071 ~
http://www.house.gov/dingell/contact.shtml
Committee ~ (202) 225-2927 ~
http://energycommerce.house.gov/membios/contact_form.shtml
Jim
February 15, 2008
It will soon be Spring in North Alabama. The hope of Spring brings
the anticipation of renewal and new growth. It brings baseball,
which doesn't mean quite as much right now. It brings Relay for
Life.
Soon, all around the country (and Canada) there will be thousands of
people, those in and out of shape, offering their time and energy to
help fund a cure for cancer. Like those who will be walking all day
or all night, there is no "one size" to cancer. It comes in the 5
day old, the 5 year old, the 5th grader, the parent with 5 children
and those who have been blessed to see 5 generations of their family
in a picture. There is no "one size" and there is no "one size fits
all cure".
So I will ask that you support this effort somehow - become a team
member, a volunteer, make a donation or stop by and cheer the
walkers on. We are all selfish - we want to stop the disease that
hurt our child, parent or friend - but by working together, maybe
someday we can stop them all.
http://main.acsevents.org/site/TR/RelayForLife/RelayForLifeMid-SouthDivision/394663836?px=2659505&pg=personal&fr_id=8825
Please stop by and visit Grace's family as one of the great loves in
their life went Home on Valentine's Day.
Philippians 2:13 For it is God who is working among you both the
willing and the working for His good purpose.
February 07, 2008
I need to be brief this morning. First and foremost, I ask all to
remember Kayley Harper in their prayers as she was called home
yesterday. Special intentions to Grace Elkis and the many other
children fighting.
S-911 now has a majority. 50 co-sponsors + the sponsor.
Sen Nelson, E. Benjamin [NE] - 1/29/2008
Sen Dole, Elizabeth [NC] - 1/29/2008
Sen Brownback, Sam [KS] - 1/29/2008
Sen Webb, Jim [VA] - 2/5/2008
Sen Cantwell, Maria [WA] - 2/5/2008
Of course, this does not mean further action is a certainity but I
have been told that now that the majority is on board there are some
things that can be done to further the passage of the bill. Let me
make a couple of calls and will pass on what I know when I know it.
This is a very important election year and this year will be the
best chance of the bill getting through so please, keep the pressure
on them.
HR 1553 has a total of 198 co-sponsors
January 30, 2008
A letter to my son
Hey Buddy,
Well, tomorrow will be one year since God called you home. Has it
really been that long? It still seems like yesterday you and I were
throwing the ball in the backyard, playing Play Station, riding
bikes, going fishing, playing putt-putt golf, hitting the water
slides and sharing the secrets that only you and I know. If you
don't mind, I'll keep those to myself and when we are reunited, can
decide if we should share them with Mom, Nikki and Matthew? Until
then, just you and I okay?
Remember the long three day weekend Mommy gave the two of us? Oh,
that was one awesome weekend. We started it that Friday night at the
ball game. I can still smell the hot dogs. Hearing the pop of the
glove. I can still see us sitting on the left field line and
watching the pitchers warming up. The homerun over the scoreboard.
Your smile...
Remember waking up the next morning and seeing the biggest snapping
turtle either of us had ever seen in the backyard? He was huge!
Grabbing the fishing poles and hitting the river? Made no difference
to either of us if we caught anything. We were together and that was
largest catch I could ever have dreamed for. Then, getting over to
do some putt-putt? I still say I won the last game. BOY'S ONLY
movies that evening with popcorn and not having to worry what the
girls wanted to watch. And then camping out in the living room?
Remember how we topped off the weekend with the water slide? Let me
tell you, I was so proud of you for going down the slide by yourself
the VERY first time. Going up and down that hill how many times?
Walking over and hitting the wave pool. You laughing at me as I
wiped out after going down that really big slide. Man, you wore me
out. How long were we there anyway?
Thanks for the memory big guy. I have no doubt it is one that will
never fade.
Mommy, Nikki and Matthew are all doing well. You would be so proud
of them. Mommy is the greatest but you already know that don't you?
Nikki is growing and learning. She is very smart but bullheaded. I
guess she got the smarts from Mommy and the bullheadedness from me.
Her smile is infectious. She includes you in her nightly prayers and
talks about you all the time. She loves and remembers you bud. I'm
grateful for that. Matthew is now walking and has a kind demeanor.
It is very rare that you do you not see him smiling. Kind of reminds
me of someone I know.... Mommy showed me a picture of you when you
were about one and then placed a picture of Matthew next to it. I
could honestly not tell you from him. Kinda cool huh?
I'll try and not grieve tomorrow but make no promises. You not being
physically here is still to difficult to guarantee that I won't.
What I will do is remember you big guy. Just as I did last night,
tonight and tomorrow night.
I love and miss you JJ........
Dad
January 29, 2008
This morning found us at Women & Children's Hospital in Huntsville.
Unlike January 29, 2007, this visit was planned.
Matthew was born with a lesion on his ear (a skin tag), and today it
was removed. Everything went as smoothly as his doctor had planned
and Matthew even woke up from the anesthesia in a good mood. (This,
alone, is something to be celebrated.)
Nikki was fabulous. She was truly concerned when I told her why we
were there, "I don't want the doctor to hurt Matthew, I'll cry."
We did go down to the Pediatric ER after we were released and said
hey to the doctor we met last year, she's wonderful, a very caring
and skilled physician, we were blessed to have had her that day.
Nikki and Matthew's day continued as usual and both were asleep by
5:30. (Don't cheer - they both woke up.)
Little James Howell had his port removed today in a surgery as
uneventful as Matthew's.
Colossians 3:17 And whatever you do, in word or in deed, do
everything in the name of the Lord Jesus, giving thanks to God the
Father through Him.
January 23, 2008
Romans 8:28 We know that all things work together for the good of
those who love God: those who are called according to His purpose.
I say again, I am not in control.
We were informed today of the lifting up of two more children,
Cheyanne and Jeremy. Please stop by and offer their families your
encouragement. I assure you, they will need the strength you send.
Galatians 6:2 Carry one another's burdens; in this way you will
fulfill the law of Christ.
January 21, 2008
One Month. It has been one month since we lost a child. On the 19th
of December it was Haley Smith, on the 19th of January it was Julian
Avery. I would like for it to be at least a month before another is
gone, but I'm not in charge.
Looking around the house, it's a good thing I don't have
responsibility for the world - I don't even have a handle on 2300 sq
ft. I have to keep putting things on higher ground as Matthew is
standing up more and exploring. He is walking from couch to chair
quite well and is finding that he can walk even if he has no real
destination.
He and Nikki spend a lot of time in the couch pillows (not that
they're on the couch - they're pulled off and piled on the floor).
It looks pretty comfortable, maybe that's where I need to spend my
days as well.
As Jim mentioned, one of our Senators was in town this weekend. He
doesn't like me much, because I blindsided him and I don't think he
appreciated it. We'll be following up with one of his staffers to
see what kind of support we can get from him.
It's turned rather cool here in North Alabama - our low for the day,
so far, was 16. That's pretty warm if you live up north, but here,
it's a mite chilly.
At Mass on Saturday, the Deacon requested a renewed zeal as we do
the work Christ wants us to. Lord, hear our prayer.
January 19, 2008
I had this big post that I was all set up to do this morning and as
I sit here, the words refuse to come so I’ll just pass on the latest
on the bill. HR 1553 has shown an increase in co-sponsors these past
couple of days with the number now at 187.
Rep Melancon, Charlie [LA-3] - 1/15/2008
Rep Walz, Timothy J. [MN-1] - 1/15/2008
Rep Oberstar, James L. [MN-8] - 1/15/2008
Rep Kagen, Steve [WI-8] - 1/15/2008
Rep Hinchey, Maurice D. [NY-22] - 1/15/2008
Rep Davis, David [TN-1] - 1/15/2008
Rep LaTourette, Steven C. [OH-14] - 1/16/2008
Rep Andrews, Robert E. [NJ-1] - 1/16/2008
Rep Bartlett, Roscoe G. [MD-6] - 1/16/2008
Rep Serrano, Jose E. [NY-16] - 1/17/2008
Rep Ramstad, Jim [MN-3] - 1/17/2008
Rep Woolsey, Lynn C. [CA-6] - 1/17/2008
When you compare the similar bill from the 109th Congress. The House
had a total of 57 co-sponsors, so you can see that your voice is
being heard. Sadly, it still sits in committee and has no further
action taken on it so please keep the pressure on these “elected”
officials. Don’t let them breathe by allowing them to say “that’s
all I can do”… It’s not. If they have come on board as a co-sponsor,
let them know you appreciate it. This will tell them that you are
paying attention and you are not just a one time letter or phone
call. Thank them and then let them know you expect them to call
and/or visit the committee chair and tell Congressman Dingle to get
the bill addressed, out of committee and on to the floor for a vote.
S911 remains at 45 co-sponsors and no further action since Diana’s
post on the 13th. Neither of Alabama’s Senators are on board yet but
the illustrious Senator Shelby is having a town hall meeting in
Athens today. The job has called me out of town but since Shelby
will be taking questions, Diana will be attending and asking. Those
of you that know Diana… well… let’s just say I pity the Senator.
Please, let’s also not forget the children in our prayers. Several
have received sad news lately of tumor growth. Special intentions to
Julian.
January 13, 2008
I usually leave the report of the Battle on the Hill for Jim, but
was awake (ridiculously) early and just thought I'd check on the
status.
S 911 has gained one co-sponsor for a current total of 45. The suits
up in DC are just moving right along; almost 1/2 have signed on in
only 10 months. Maybe by one year it'll have the support of a full
50 percent. On the 12th of December a couple of things happened, one
of which is that is was placed on the Senate Legislative Calendar
under General Orders - Calendar #535. I don't know what it means,
but it looks promising.
HR 1553 has also gained the support of one. 175 have come on board.
I will show my political ignorance by admitting that I don't know
what percentage that is. (I also can't remember the whole red
state/blue state thing.)
We continue to go about our days. This week found Nikki and Matthew
back in school after the Holydays. She missed dance class because we
had severe weather heading for the area - the threat was enough to
have most of the local schools closing early. We were blessed that
when the storm rolled by our house it was some wind and much needed
rain (not the tornadoes that were possible).
There continue to be too many children and their families who are
affected by pediatric cancers. These diseases come with a need to
make treatment decisions and as parents there is concern in choosing
the "right" one. I offer the following words. 2 Timothy 1:7 For God
has not given us a spirit of fearfulness, but one of power, love and
sound judgement.
January 08, 2008
Happy Birthday Matthew!
The youngest of our gifts is now 1 year old. This happened so much
faster than I could have ever imagined. He has begun walking (and is
following very closely in his brother's footsteps - JJ's first real
word was "Tripper" (our Labrador Retriever) - Matthew's is "dog"
(the same dog JJ was talking to).
There are (and will continue to be) times he looks so much like JJ,
and others he is purely Matthew. Then you tell him "no" and he looks
just like Nikki did, it's really pretty cool.
Once again I will apologize for not being as current on our sites,
or the other children's pages as I would like to be. I sincerely
hope that that will be changing shortly. But not tonight.
The birthday boy is sleeping soundly as is his sister. We are under
a tornado something (watch, I think). So, I will try and add the
chocolate covered face of my little boy and hope that the storm
calms down a bit before it makes it to our patch of land.
January 02, 2008
Happy New Year to all. Can’t say yesterday was the easiest but as
you can surmise from me posting today, we got through it.
Well, I suppose I can start by saying that 2008 has not diminished
my desire to rant, rave and scream about the inaction of my elected
representatives. I looked up S-911 to see the latest. Nothing new on
action but a “cost estimate” was completed on the 19th of December.
I’ll not bore you with the entire estimate but found one finding
very interesting. Did you know that The National Cancer Institute
(NCI), which supports the majority of pediatric cancer activities at
the NIH, spent $179 million on childhood cancer activities in fiscal
year 2006? Among these activities were: research on the causes,
diagnosis, treatment, and prevention of childhood cancers; a
national campaign to increase understanding of childhood cancer; and
a study of the feasibility of establishing Childhood Cancer Research
Network to develop a national registry of childhood cancers.
One would say, gosh, that’s a lot of money but look again. That’s
179 million for ALL childhood cancer activities.
Now, your saying… and?
Well, when you compare it to the Senate Report 108-08 from 2002…
Senate Committee on Appropriations “remains strongly committed to
improving research and prevention efforts in the area of prostate
cancer and has included $4,770,519,000, an increase of $178,171,000
over the fiscal year 2003 appropriation, for cancer research
programs at the National Institutes of Health. The Committee
understands that of this amount, the National Cancer Institute plans
to devote approximately $399,900,000 specifically for prostate
cancer research.” Amazing that both my Senators have had this but
have yet to co-sponsor or commit.
Now, if the Senate allotted 4 Billion, 770 Million, 510 Thousand
dollars in 2002, how is it that the children only get 176 million in
2006? Further, there is a 220 million dollars difference between ALL
of the childhood cancer activities combined and one cancer
(prostate) that has a survivability rate of 99% at 5 years! Now, the
senate report I cite was from 2002. The below web page shows only…
sigh… only 80 million for prostate cancer in FY07 or 730 million
from 1997-2006.
http://cdmrp.army.mil/.
Look, I’m not saying that research does not need to be done for
prostate, breast, and all other cancers. It is truly needed but I
cannot understand the disparity. It’s maddening. It’s confusing.
It’s… it’s… causing my blood pressure to go up.
Little joke there, I’m fine.
Really.
Honest.
Will you at least take an Okie Dokey?
Please keep calling, writing and e-mailing your representatives.
December 31, 2007
In 2007, we were blessed with the gift of Matthew. Three weeks
later, JJ was blessed with the gift of eternal life. I miss my boy
more than I can place into words but do know that God is taking
better care of him than I ever could. I am grateful for the gifts
God has showered upon this family. We have come to know more people
that I can call friends than I ever imagined although I do wish it
were under different circumstances. Thank you Lord for your gifts.
Your gift of knowledge, strength, peace and understanding. Thank you
for the trials as this can only make us stronger and make us more
rounded that one day we can better serve You.
69. That is the number of children that passed in 2007. 69. And that
is only the children that we are aware of. Probably about a third of
the children who have been diagnosed with a DIPG in one year.
I am reposting the video. Please...Remember them.
http://www.youtube.com/watch?v=vUr91SSjmek
Jim
December 27, 2007
Related bills of the 109th and 110th sessions of Congress. Please
note the number of cosponsors. Your phone calls, letters and e-mails
are making a difference. If there is no date next to the subject...
that means the bill never made it to that level.
H.R. 4927 [109th]: Conquer Childhood Cancer Act of 2006 (Status:
Dead) ~ cosponsors (57)
Status:
Introduced ~ Mar 9, 2006
Scheduled for Debate -
Voted on in House -
Voted on in Senate -
Signed by President -
S. 2393 [109th]: Conquer Childhood Cancer Act of 2006 (Status:
Dead)~ cosponsors (1)
Status:
Introduced - Mar 7, 2006
Scheduled for Debate -
Voted on in Senate -
Voted on in House -
Signed by President -
H.R. 1553 [110th]: Conquer Childhood Cancer Act of 2007 ~ cosponsors
(175)
Status:
Introduced - Mar 15, 2007
Scheduled for Debate -
Voted on in House -
Voted on in Senate -
Signed by President -
S. 911 [110th]: Conquer Childhood Cancer Act of 2007 ~ cosponsors
(45)
Status:
Introduced - Mar 19, 2007
Scheduled for Debate - Dec 12, 2007
Voted on in Senate -
Voted on in House-
Signed by President -
As you can see, S911 has gone further than any other. Please, keep
the pressure on our employees. That's right, I said it. They quickly
forget who they work for. Drop them that e-mail, make that call,
write that letter, remind them that they work for us.
Jim
December 25, 2007
Merry Christmas to all. We pray all are having a joyous day and
celebrating the true reason. As for us, we're giving it our best.
Santa and Mrs. Claus were up a bit later than they would have liked
to have been. Nikki was running a fever of 103.1. A call to the on
call doctor had Santa heading to the drug store in the wee hours of
the night to acquire a resupply of children's Advil and Tylenol. I
woke early (4:30), checked the fever to find it gone. Since all were
still snuggled safely in their beds, I decided to give JJ an early
visit and wish him the joy of the day (around 5:00). Got back home
around 5:30 and at 5:45, the house rose with such a clatter. Okay,
Matthew bellowing (but clatter does fit nicely). The tearing and
ripping of paper soon followed as a three year old ensured that
everyone could see what they received. As for Matthew being a
rambunctious 11 months, he was confined to the high chair (don't
worry, Nikki made sure he got all his presents). As many can
imagine, this year has not been the easiest. We miss JJ and the
opening of presents was not met with quite the amount of enthusiasm
as the previous 7. Not that we find the reason any less joyous. If
anything, the holiday has an even greater focus for us now than ever
before. We celebrate God's blessing and gift of his Son like never
before. There's just a hole from JJs absence that makes it
difficult. But, today is not about us is it? We recognize what Jesus
did and the sacrifice he ulimately made for us and we are eternally
grateful. Today, we celebrate His birth.
Matthew received a nice little book titled "Christmas in the Manger"
that I would like to share with you (don't worry, it's one of those
children books that have very few words).
I am the star that shines in the east,
I light the stable for man and for beast.
I am the donkey, soft and gray,
I carried His mother from far away.
I am the ram, with my curly horn,
I guard the stall where the child is born.
I am the ox, strong as steel,
before the only Son I kneel.
We are the shepherds who watch the sheep,
tonight a holy watch we keep.
We are the wise men, gifts we bring,
for baby Jesus, our newborn king.
I am Mary, the mother mild,
how I love, my tiny child.
I am the baby, asleep in the hay,
and I am the reason for Christmas day.
Nola Buck & Felicia Bond
May all have a safe, joyous and Merry Christmas.
Jim, Diana, JJ, Nikki and Matthew
December 18, 2007
Last month, while moving another child to the Lifted Up page, I
noticed that the year was coming to a close.
For about 5 seconds I was truly happy for the first time in a long
time. My heart was light in my chest and I could feel the relief
that this disease would be over soon.
Reality came crashing when I realized that tumors pay no attention
to the calendar and that January 1st or January 2nd or May 19th, I
may have to move another of the Other Kids. With that knowledge, my
heart sank and my eyes filled with tears.
The fight of so many families against dipg continues. Our family's
fight continues. I will be very honest with you. I haven't kept as
current on the kids as I have previously. Emotional strength is a
casualty in this war and too often I have to stay off the front
lines because I have battle fatigue. Maybe a slap from Gen. Patton
would do some good.
The season of Advent continues and each day brings us closer to His
return.
Oh Come, Oh Come Emmanuel!
December 16, 2007
I saw JJ Friday.
Now, before you all think Jim has gone over the edge, let me
explain. Nikki had her Christmas recital Friday night at her
pre-school. The last time I was inside was when JJ had his
graduation there and it was the first time I noticed and commented
on his eye being turned in. So, as Diana, Matthew and I waited for
the show to begin, I saw JJ. The memories that came forward made it
feel so real it was almost like I had gone back in time. I saw him
entering the auditorium, saw him walking down the aisle and up onto
the stage, saw him smile at us and do his rehearsed part. Then, it
got hard as the memories of what came after hit me right in the
nose. I was actually looking for the exit when the show started and
allowed the memories to recede. I'm glad too as I did not want to
let Nikki down. Speaking of... she was wonderful. Singing, a little
dancing and doing sign to music. But the biggest reward was when she
saw us in the crowd and that fantastic smile of hers came across her
face. So, as hard as it was, it was worth it. Both for her and for
Diana and I. I will tell you this, these many firsts without JJ are
a bear to bear.
HR 1553 has gained an additional 5 co-sponsors and stands at 174.
Rep Young, Don [AK] - 12/4/2007
Rep Duncan, John J., Jr. [TN-2] - 12/4/2007
Rep Weldon, Dave [FL-15] - 12/4/2007
Rep Hare, Phil [IL-17] - 12/12/2007
Rep Honda, Michael M. [CA-15] - 12/12/2007
No movement on S911 and still stands at 44.
December 05, 2007
Give credit where credit is due. Greg Tompson put together this
video a couple of days before I did. He did this to honor all the
children (that we know of) that have passed away this past year.
http://www.youtube.com/watch?v=_cZTCZooUek
I watched it and thought, man I need to do something like that. Two
days later, I sat down and put one together. I didn't realize until
I watched his video again this morning that I had done almost the
exact same thing Greg did. Call it a block or the video had such a
major impact on me that I locked it in. I don't know. I honestly did
not realize it was so similar. Those that know me are now nodding up
and down and thinking... should have guessed. Jim just isn't smart
enough to have come up with that all on his own.
Greg, you are wonderful person and thank you for remembering all the
children.
December 04, 2007
I have received many positive returns on the video. I am humbled and
honored by your comments. Please pass the video on as the more
people that learn of the children, the sooner action can be taken to
find the cure. Also, I have an idea for another video but need some
help. If you will, please send me two photos that you like. One of
the child alone. Of course, a pose is not necessary and would
actually prefer a shot of the child doing something they enjoy(ed)
doing and one of the family as a whole. As soon as I get enough,
I’ll try to put it together. e-mail to - lookdaddy@knology.net.
As we are in the middle of the holiday season, I have to admit, this
year, I’m not feeling it like I should. By now, the lights are
usually up on the house, the front door is decorated with lights and
a wreath, stockings hung and the house is coming together in scent
and music. We still buy and decorate a live tree (Frazier fir) which
usually goes up the first or second of week of December. This year….
Diana has done her part. Decoration of a small tree in JJ’s room is
done, presents bought/wrapped and music has been played. Me?
Presents are bought but not wrapped. I wanted to get up into the
attic last weekend and start getting the lights together but could
not bring myself to do so. You see, last year, JJ helped me check,
detangle and hang the lights, run the extension cords, etc. This
year, well…. they’re still in the attic and I have to admit, will
probably stay there. Now, don’t get me wrong. I will not rob Nikki
and Matthew of the festive and joy of the season, it just has to be
a little different this year. I will go up and get down the lights
for around the door and will string the bushes in the front, etc.
The roof? Doubtful. Just too much of a memory that is preventing me
from doing so. It’s difficult and the best way I can describe the
feeling would be… It’s kind of like pulling a scab off a wound. If
done too early, it starts to bleed again and hurts. Well, the wound
is large and deep. Unfortunately, time is against me on this, as
again, I will not rob Nikki and Matthew of this cherished event.
Some childhood memories are a must and this is one of them. So, this
weekend, I’ll pull the scab and let it bleed.
December 03, 2007
I put this together yesterday. Hope everyone likes it.
http://www.youtube.com/watch?v=vUr91SSjmek
The video is honoring all the children and am sorry for those that I
could not fit.
Jim
December 01, 2007
This morning I am saddened. It is the usual routine to wake early
and have my quiet time, coffee and check in on the kids. The first
child I read showed the following...
I am so sad to have to write this journal entry. I am sad for all of
the people who loved Madeline from the day she was born, and those
who have fallen in love with her through the last year. The Lord
sent His angels to Madeline again, and this time they took her home
to Himself...
Please drop by and visit Madeline's page and offer up a word of
encouragement to the family. You might also want to read the
previous post. Very uplifting and am grateful to God for allowing
Madeline and her family the peace of knowing. We grieve with the
family and rejoice with the Angels.
As much as I am truly happy at the strengthening of Heaven, I still
find a need and desire to help in anyway I can in the quest for a
cure. In that aspect (and the fact that I'm not near smart enough to
do much else), I will continue to check out the bills and pass on
the latest.
HR 1553 has an additional 7 co-sponsors since last update and stands
at 169.
Rep Fallin, Mary [OK-5] - 11/15/2007
Rep Jefferson, William J. [LA-2] - 11/15/2007
Rep Bordallo, Madeleine Z. [GU] - 11/15/2007
Rep Cohen, Steve [TN-9] - 11/15/2007
Rep Roskam, Peter J. [IL-6] - 11/15/2007
Rep Calvert, Ken [CA-44] - 11/15/2007
Rep Courtney, Joe [CT-2] - 11/15/2007
S-911 remains at 44.
Prayers to all the children and families.
Jim
November 22, 2007
I won't say much today about us. Instead, I ask that all please
remember Katie Metz and her family in your prayers. She is not doing
well and any added prayers I am sure would be appreciated. I also
ask that the family be given some room. If they don't answer the
phone, understand why. If they don't answer the e-mail, understand
why.
Don't forget all the children and their families.
Please, during this time of Thanksgiving, remember to actually "give
thanks" and you know to who.
November 15, 2007
Since I posted yesterday, there has been a development in S 911
(Thank you Yvonne for letting me know). Looking at the bill this
morning states
"Latest Major Action: 11/14/2007 Senate committee/subcommittee
actions. Status: Committee on Health, Education, Labor, and
Pensions. Ordered to be reported with an amendment in the nature of
a substitute favorably".
Not sure what it means and the word "amendment" somewhat scares me
but I do like the word "favorably". I'll keep checking and if
anything further comes along, I will post. My many thanks to all the
continue to pressure congress on this issue.
HR 1553 also has an additional co-sponsor (162)
Rep Bachus, Spencer [AL-6] - 11/14/2007
Jim
November 14, 2007
Very Brief update...
Just wanted to let everyone know the latest on the bills.
Hr 1553 has gained a couple of more names and now stands at 161.
Rep Doggett, Lloyd [TX-25] - 10/31/2007
Rep Cole, Tom [OK-4] - 10/31/2007
Rep Matheson, Jim [UT-2] - 10/31/2007
Rep Lucas, Frank D. [OK-3] - 11/7/2007
Rep Spratt, John M., Jr. [SC-5] - 11/13/2007
S 911 has also gained one additional name and stands at 44.
Sen Lincoln, Blanche L. [AR] - 10/30/2007
Sen Murray, Patty [WA] - 11/8/2007
Both bills remain in committee with no new action on either.
Jim
November 06, 2007
Wow, time just keeps flying by, doesn't it?
We're doing ok. The Holyday season is fast approaching and will be
here before we know it. Like so many families, we will be
experiencing Christmas without someone special.
But, thanks be to God, JJ will be celebrating Christmas with the
birthday boy Himself. Must be some shindig.
Completely different subject:
We have been asked to find homes for some of "The Giving Dolls" -
for an article about them and their creator, please go to
http://www.ohio.com/news/top_stories/10407492.html?page=all&c=y
These dolls, both boy and girl, are handmade by volunteers, and each
deserves a loving home, not just someplace to go and be tossed in a
closet. If you are the parent of a child with a life-threatening
challenge and think that your child would truly enjoy receiving one
of these special friends, please drop us a line at
icouldbeyourchild@knology.net. Very soft and cuddly. A good
companion. At this time, we have a very limited number, so please
don't be disappointed. "The Giving Dolls" may supply more in the
event we run out.
Over the past few months we have been blessed to have had JJ
remembered by so many people. His Scout Pack, Creekside Elementary
(on more than one occasion), St John's Catholic Church, Children's
Hospital - Birmingham, and NIH. On the 27th of October, in JJ's
memory, Nikki threw out one of the first pitches at the Knockin'
Cancer Out of the Ballpark event. She held that ball all the way
home.
We are beginning a collection of your memories of JJ. As Nikki &
Matthew grow, we feel that it is important to them to know more
about their big brother than we can tell them. So, we are asking
that as you think of things, or all at once, you drop us an email or
a note so that we can all learn about JJ thru your eyes. And even if
you've never met him - you must be reading this for a reason.
As always, we ask that you keep the kids and their families in your
prayers. Today, specifically, for Sahara's family.
For it is God who is working among you both the willing and the
working for His good purpose. Philippian 2:13
October 31, 2007
Sorry for the delay in updating everyone. We’re doing as well as can
be expected. Nikki continues to grow and mature in leaps and bounds.
Matthew is well on the way of out growing me by several inches. He
had his nine-month check-up a couple of weeks ago and is averaging
about an inch a month, placing him the 75 percentile. Not bad for
being three weeks early. Diana and I continue to stay busy. I with
work and Di with her social and church related functions. All in
all, we’re getting by. We know the coming months will be a challenge
as we come up on the major holidays without JJ but am sure we’ll
manage.
Now, on to one of my driving forces. HR 1553 and S 911. There have
been a couple of more co-sponsors (from both sides of the hill)
since the last update.
HR 1553 ~ up six to 156.
Rep Gallegly, Elton [CA-24] - 10/16/2007
Rep Johnson, Henry C. "Hank," Jr. [GA-4] - 10/16/2007
Rep Turner, Michael R. [OH-3] - 10/22/2007
Rep DeGette, Diana [CO-1] - 10/22/2007
Rep Murtha, John P. [PA-12] - 10/24/2007
Rep McCarthy, Carolyn [NY-4] - 10/25/2007
S 911 ~ up two to 43
Sen Dodd, Christopher J. [CT] - 10/15/2007
Sen Lincoln, Blanche L. [AR] - 10/30/2007
I like to have facts and figures as I continue to correspond with
our elected officials so as I do research, it is amazing some of the
things you can come across.
For instance ~ The “Report of the Brain Tumor Progress Review Group”
~ Composed by the National Cancer Institute and the National
Institute of Neurological Disorders and Stroke ~ November 2000
http://planning.cancer.gov/pdfprgreports/2000braintumor.pdf
On Page 6 of the report it states:
Because identification of the risk factors for brain tumors may aid
prevention and suggest effective treatments, high-quality
epidemiological studies are extremely important. Factors that
inhibit epidemiological studies include the relatively small number
of patients affected by brain tumors and the large number of
histopathological types of these tumors. These factors complicate
the design of research protocols and limit the statistical power of
the data collected. In addition, existing tumor registries are
neither linked nor structured to facilitate the collection of large
numbers of samples for meaningful epidemiological research.
Important epidemiological scientific priorities, therefore, include
the following:
• Support the linking of existing databases to provide larger
numbers of samples for epidemiological studies.
• Expand and enhance databases to include all primary brain and
spinal tumors—malignant and nonmalignant, adult and pediatric—and to
have the flexibility to accommodate new histological and molecular
classifications of tumors.
Kind of sounds like some of what is proposed in HR 1553 and S911
doesn’t it? The amazing thing is….. The report was written in 2000.
Seven years ago. And yet, over half the house and senate (yes, lower
case) refuse to commit and declare their support for these bills.
I also found out that approximately 10,000 bills are introduced into
each session of Congress. That’s every two years folks. Can you say
placate the public by saying… “See? we’re trying”. They’re not
trying to do any such thing other than keep their job and seat of
power. Why do I make that statement? Because sadly, only about 4% of
these 10,000 are passed. Their plan is simple… Let it sit in
committee until the next session and then it will have to be
re-introduced and the process can start all over again. They know
this but the public for the most part, does not. Until now. Please,
keep placing the letters and calls into your elected officials.
Please, don’t let HR 1553 and S911 fall into that 96 percentile.
Children are passing away daily and they are not doing anything
about it. It’s got to change!!
Whew, um… sorry. I guess I’m just a little passionate about this.
October 19, 2007
It's been exactly 2 years since we were told that our son had a
brain tumor.
In that time we lost one child and part of another's childhood.
Nikki wasn't even a year old when we started treating symptoms;
she's now almost 3 1/2. She grew up while we were fighting a
disease. She went from baby to toddler to little girl and we didn't
always notice.
Now, she's the big sister and she's good at it. She can make Matthew
laugh and follow her around the house. JJ was the same with her.
Today, because I didn't have the camera, I captured a picture in my
heart. We were in the truck and she was holding Matthew's hand - it
matches another picture I took the same way. JJ holding Nikki's
hand.
I guess that for the next few years there will be lots of
comparisons. JJ/Nikki, JJ/Matthew, Nikki/Matthew. There always are
with siblings. One day, too soon, there won't be as many
comparisons, because Nikki will be blazing the trails that JJ never
walked. And one day, too soon, Matthew will have grown from a baby
to a toddler to a little boy. I hope we do notice, because I'm tired
of losing parts of childhood. I'm tired of losing children.
It's been exactly 2 years since we were told that our son had a
brain tumor. He should have been 7 today; his due date was 19 Oct
2000. How about that for coincidence?
October 12, 2007
Today is Diana’s birthday! How old is she you ask? Well, she’s… hey…
ow… ouch…. okay, okay. Um… 23. Going to have to say an extra prayer
for that one tonight. Happy Birthday to JJ, Nikki and Matthew's Mom!
We’re all doing pretty well but are still saddened as children are
being called home. Nikki continues to mature daily and is a joy.
Matthew is all over the place and can motor on all fours almost as
fast as I can on two. Standing assisted and would venture a guess
that he’ll be walking by Christmas (if not well before).
Speaking of Christmas, it’s almost that time of the year to start
shopping. I’m terrible at solicitations but I’ve got to give it a
try. If by chance you do some shopping on-line, we ask that you
visit the igive store in the “gift shop”. Many, many commonly known
stores are present (JC Penny, Sears, Sports Authority, Etc) and by
shopping through igive, this gives something back to the children.
If not us, please check out the other foundations as many have items
or links that they can benefit from.
HR 1553 – 150. No new co-sponsors since last update.
S911 – 41: three new co-sponsors.
Sen Landrieu, Mary L. [LA] - 10/4/2007
Sen Biden, Joseph R., Jr. [DE] - 10/4/2007
Sen Reid, Harry [NV] - 10/4/2007
Please keep all the children and their families in your prayers.
Many continue to show what the true meaning of strength, courage and
Faith is.
Jim
October 04, 2007
Our sorrow and Heavens' blessings.
Today Hannah Deal was called home. On the 30th, Sebastian Ozment
was. We grieve for the families and rejoice for Heavens gain. Please
visit Hannah's site and leave a kind word. Sebastian did not have a
site but we will link to a guest book this evening and I ask that
you all drop a word of encouragement.
October 04, 2007
I want to thank all for allowing me to post on HR 1553 & S911. I am
not one to sit still (Diana's in trouble when I eventually retire)
and I realize that since I cannot physically attack the tumors that
attack these children, I have turned my energy towards getting these
bills passed. I guess it's a way of staying involved as best I can
and gives me purpose. Anyway, thanks for allowing me the release.
HR 1553 is up to 150 co-sponsors
Rep Jackson-Lee, Sheila [TX-18] - 10/1/2007
Rep Lantos, Tom [CA-12] - 10/3/2007
Rep Blumenauer, Earl [OR-3] - 10/3/2007
Rep Clay, Wm. Lacy [MO-1] - 10/3/2007
S911 has no further invovement and still stands at 38.
We, as a family, are doing okay. Nikki is in pre-school three days
out of the week and Matthew is even going twice per. Diana is
staying busy with her friends and church activities. We do miss JJ
and some days are definately harder than others. On the hard days, I
haven't noticed a reason or indicator that sets off these moods. It
just kind of happens. But like I said, all-in-all, we're doing okay.
Prayers for the many children and their families still fighting.
Jim
September 28, 2007
Getting there.
I want to thank all for the continued efforts to get our elected
officials working for the kids. They are starting to listen and are
continuing to come on board as co-sponsors. Please keep pressuring
those that have not and thank those that have.
HR 1553 ~ 146
Rep Barrett, J. Gresham [SC-3] - 9/19/2007
Rep Shuler, Heath [NC-11] - 9/19/2007
Rep King, Peter T. [NY-3] - 9/20/2007
Rep Ros-Lehtinen, Ileana [FL-18] - 9/24/2007
Rep Lofgren, Zoe [CA-16] - 9/24/2007
Rep Lowey, Nita M. [NY-18] - 9/24/2007
Rep Bonner, Jo [AL-1] - 9/24/2007
Rep Berman, Howard L. [CA-28] - 9/24/2007
Rep Baldwin, Tammy [WI-2] - 9/26/2007
Rep Perlmutter, Ed [CO-7] - 9/27/2007
S911 ~ 38
Sen Mikulski, Barbara A. [MD] - 9/20/2007
Sen Kennedy, Edward M. [MA] - 9/27/2007
Our continued thoughts and prayers to the children and families
affected by such an injustice. Special intentions to the Binns
family, Hannah D, Sophie, Anne-Sophie, Grant, Trinity and... so many
more.
Jim
September 21, 2007
Andrew Long and his family are our friends. They were there for us at clinic 8, they were there for us at the hospital, they were there for us when we laid JJ to rest and they were always there for us in prayer. For three years, Andrew fought and hurt. No longer. Last night, a very special child to our family was called home. I ask for prayers of peace, strength and understanding for his family. Please visit his site and offer words of encouragement during this difficult time.
September 20, 2007
Sorry for the last post. This site is not designed for that purpose and I should not have phrased my frustration as I did. I'll try not to do so in the future. I do though, wish to thank all that continue to pressure their represntatives and senators into supporting HR1553 and S911. More cosponsors have signed up in support of both bills.
S911 - 36
Sen Klobuchar, Amy [MN] - 9/12/2007
Sen Pryor, Mark L. [AR] - 9/18/2007
HR1553 - 138
Rep Ellison, Keith [MN-5] - 9/18/2007
Rep Schakowsky, Janice D. [IL-9] - 9/18/2007
Rep Lewis, John [GA-5] - 9/18/2007
Rep Barrett, J. Gresham [SC-3] - 9/19/2007
Rep Shuler, Heath [NC-11] - 9/19/2007
On the home front, we’re doing okay. Naturally, we miss JJ just as much today as the day he went home but we’re getting by. Nikki is growing in leaps and bounds (both physically and emotionally). She has taken over all the duties of being a big sister and it is a joy to watch her playing with Matthew. He, in return, follows her around continuously and loves being near her. Matthew has also become extremely mobile (to the point of having earned the new nickname of “scooter”) and is already trying to stand. His demeanor and personality is so close to JJs that it is almost like looking at a twin. That’s a good thing.
Prayers to all the children with special intentions to Andrew, Brooke, Sam, Anne-Sophie, Sophie, Grant, Hannah B, Hannah D, and Trinity.
Please stop by Chase's page and offer his family your support and prayers as he joined Jesus yesterday.
September 11, 2007
Trivia Time!
Who said, “I urge the President to stop playing politics and start working with Congress to protect the health of our children.” 7 Sept 07. Give up? Answer: Representative John D. Dingell of Congressional District number 15 of Michigan Now, who is Representative Dingell and why is some guy from Alabama talking about him? Well, he is no other than the Chair for the Committee on Energy and Commerce. This committee would be the one where HR 1553 sits with no action taken. He is the chair that controls and decides what is and what is not addressed in this committee.
Don’t believe me? I pulled the below right off of the committee on energy and commerce page (http://energycommerce.house.gov/index.shtml). Look right under “selected legislation”. Gee, I wonder whose really playing politics as one does not have to look closely to see the connection between the “selected legislation”. H.R. 1781 - Children's Dental Health Improvement Act of 2007 Introduced by Rep. John D. Dingell on March 29, 2007 H.R. 1535 - The Children’s Health First Act Introduced by Rep. John D. Dingell, March 15, 2007 H.R. 1017 - PROTECTING CHILDREN'S HEALTH IN SCHOOLS ACT OF 2007 Introduced by the Honorable John D. Dingell on February 13, 2007 H.R. 3162 - Children's Health and Medicare Protection (CHAMP) Act of 2007 Introduced by Rep. John D. Dingell on July 25, 2007 H.R. 4, the Medicare Prescription Drug Price Negotiation Act of 2007 Introduced by Rep. John D. Dingell on January 5, 2007 Trivia Time Again! Why has Congressman Dingell ensured at least 5 bills that HE introduced has cleared the house but yet HR 1553 has not been addressed? Answer: I don’t know. You’ll have to ask him. The Honorable John D. Dingell United States House of Representatives 2328 Rayburn House Office Building Washington, D.C. 20515-2215 ~ (202) 225-4071
My guess - he is playing politics and this tics me off as we are talking about children's lives. But hey, look at all the bills that merit closer attention than HR 1553 that HE did introduce.
HR 1553 Co-sponsorship has jumped up one to 133.
Rep LoBiondo, Frank A. [NJ-2] - 9/5/2007
S 911 has also seen a jump of three to 34.
Sen Stabenow, Debbie [MI] - 6/4/2007
Sen Whitehouse, Sheldon [RI] - 6/4/2007
Sen Wyden, Ron [OR] - 6/4/2007
September 05, 2007
Okay, our illustrious elected officials have come off their month long break. As they take their collective sighs and mumble something along the lines of “well, let’s get back to it…” I also have taken my collective sigh and mumble, “hope you enjoyed the break ‘cause I’ve been waiting”. Update on HR 1553 ~ Rep Moore, Gwen [WI-4] - 9/4/2007 Rep Capps, Lois [CA-23] - 9/4/2007 Rep Israel, Steve [NY-2] - 9/4/2007 Rep Fossella, Vito [NY-13] - 9/4/2007 Rep King, Steve [IA-5] - 9/4/2007 Rep Lampson, Nick [TX-22] - 9/4/2007 Total Co-sponsors to date: 132 Nothing new from the Senate and S 911. Cosponsors still stand at 31. I ask that you continue writing, calling, and e-mailing your representatives and senators. These bills are subject to action throughout the 110th congress. Meaning, it is possible for action to be taken until January 2009. Do not grow tired at making this happen, do not resign yourself that they will not take action, do not allow those elected to ignore us. Our kids do not have the luxury of growing weary of the fight and neither can we. I also ask that we all continue to pray for all the children fighting this fight. All are in need of prayers but too many are in need of special intentions. Please visit Brooke, Hannah, Andrew, Sam, Sophie, Anne-Sophie, Victoria, Trinity, and Katelyn. Drop them and their families a line of encouragement and know that they do not stand-alone. I’m sure there is other children I missed so forgive me if I failed to add that child to the list of special intentions. I just cannot keep up.
3 September 07
We are blessed to have friends.
Friends who have not forgotten. Friends who continue to support our efforts to help find a cure for dipg and, in fact, are creating ways to help. For example:
Help raise
awareness and find a cure for pediatric brain tumors.
Join
me, Yvonne Koubek, for a Tastefully Simple party with consultant Anne Tuggle.
Wednesday, September 12, 2007
6:30pm
208
Glenn Ellen Dr.
Harvest, AL
RSVP:
yvonnemkoubek@yahoo.com
15%
of product sales will go to benefit the foundation I Could Be Your Child (www.icouldbeyourchild.org).
Currently, I Could Be Your Child is awaiting
501(C)(3) tax-exempt status.
Should you wish to place an order, but are unable to attend the party, please e-mail me, Yvonne Koubek, at yvonnemkoubek@yahoo.com put Tastefully Simple party to benefit I Could Be Your Child on the subject line. Please let me know in the message where the products will be sent so that the appropriate tax rate can be calculated. There will be a 10% shipping charge on all orders.
I
will need all outside orders prior to September 12th.
31 August 07
Seven Months.
Today marks seven
months since JJ was called home.
Buddy, The days are longer and not near as filled as before. Our time spent
together is lasting and the memories have not faded. I miss you in all
aspects kiddo. Today while mowing the grass, I could almost see you running
after me with your rifle, then climbing your tree house and shooting at me.
I can still hear your laugh over the sound of the engine. Yeah big guy, the
memories are still strong and I am grateful for it. I know you are in a much
better place now than I could ever have possibly provided for you. Your
dream reaffirms that. Oh how I wish you could have told us more of the
sights and sounds that night. Just how wonderful a place it must be that you
cried about not entering at that time. How wondrous it must be that even at
your age, you grieved about not entering. Well, again, I know that you are
there now and that gives me great peace. Your mom, sister and brother are
all doing well and we've no complaints other than not having you here
physically with us. One day we'll be together again. In time buddy, in time.
27 August 07
Sorry for the delay in
writing. JJs birthday was pretty tough and posting has just been difficult
for me. I also want to apoligize to all the families and the children
fighting for not leaving messages. I do check the pages, I just haven't been
able to bring myself to post a message. Diana and I think and pray for you
all daily. Please keep all the children in your prayers as several are
having difficulties. Special prayers to Brooke, Andrew, Sam, Hannah, Grant,
Trinity, Jeremy and Victoria.
I also wanted to share a little something. Last September 3rd, while we were
traveling to NIH, JJ had a dream that Diana was able to jot down. Well, the
other day, she found her notes and we thought we would share it with you. We
were in Bristol, he woke us early in the morning. Now trying a get what he
dreamed from a just turned 6 year old in the middle of the night, was tough
but through his sobs, he was able to tell us bits and pieces. His dream was
that he was standing on one side of a gate and was sad because the gate was
closed and he couldn't get in to the other side. With him, was a girl. On
the other side, he saw a man who was smiling and happy. That's it. That's
all he told us. Not much to it right? Think about it. A couple of days later
we found out that there was 20% growth. How does one interpret the dream? My
take... JJ was at the gate (you know which one), the girl next to him was an
angel sent to watch over him. On the other side was our Lord who I think had
met him at the gate. I think the smile and joy was that Jesus knew JJ was
coming. I think he wanted to tell him, that he was coming home but that it
was not yet time. I can only imagine what else he saw and heard that he
could not form into words. To tell you the truth, I'd be sad too.
Anyway, thought I'd share that with you.
21 August 07
It's Official...
Matthew is officially mobile. As I write this, he is crawling to get to the video camera. I'm not sure if that's so he will never be blackmailed with the images or if he's already a techno-geek. Because he does enjoy reaching for the remotes and PlayStation as well, I have my suspicions.
Nikki surprised me yesterday, we were driving and out of the blue I started the Lord's Prayer. Well, I said the first line and instead of repeating it - she said the next! We pretty well alternated thru the whole thing. She hears it most every night at bedtime - so it shouldn't be a surprise that she has absorbed it. You just don't think they know as much as they do.
This past weekend was not easy. Our preference would have been that JJ had been eating chicken drums (drumsticks), potato salad and cake with us; instead he could very well have been thinking that what we had doesn't hold a candle to what he was privileged to eat. He did have several visitors over the course of the day; thank you all for remembering him.
My guess is that this first year, with all it's "firsts" will be the most difficult to get thru, but I know that there will always be times (everyday) that his absence is more notable. Many of these are far down the road, graduations and weddings for example. I ask that in your own lives you not just focus on the events of each year (first day of school, Christmas, whatever) but also on the moments that make up every day of your life. These can often be found on the computer - they are the pictures we've taken, but didn't print. Take a couple of minutes and remember those moments, then be sure to go make some more. You never know if that opportunity will ever come again.
Ephesians 1:11-12 In him we were also chosen, having been predestined according to the plan of him who works out everything in conformity with the purpose of his will, in order that we, who were the first to hope in Christ, might be for the praise of his glory.
18 August 07 (almost)
Birthday Boy
JJ,
As I was starting to write this letter in my head, I thought “6 years ago”, then realized that it was 7 years ago that you were born. I guess that shows me that you will always be my little boy.
You never read the letter I put in your baby book, the letter I started to you soon after you were born, then finished two years later - here it is, as true now as it was when it was written.
Hi Little Boy!
You know, we hadn’t been expecting you 9 weeks early. Friday, 18 Aug 00 your daddy & I were supposed to see Alabama in concert - it was my (late) anniversary present for him. Instead, we got you! You have been a blessing to us, our little miracle. I never knew that I possessed the patience you have shown me that I have, thank you.
My first look at you - live & in person - put me in mind of a little grey squirrel, and I will always cherish that picture I carry in my heart.
It is a joy to watch you grow, tho, at times, I would like to keep you small forever.
Please know that I will always love you.
I love watching & listening to your father with you almost as much as I love being near you myself.
You have changed so much in these first two years - it has been an incredible thing to watch. You have quickly become a little boy from the doll-like-baby we brought home.
And what a boy you are! Blue - thru & thru. Trucks, balls, climbing all over. Each wonderful & so much a part of you.
May God bless you as much as He did us, when He gave you to your father & I.
Love Mommy
15 August 07
JJ's Stone
Today's visit with JJ provided a surprise. His stone was in the process of being placed. We had asked if it could be in this week (his birthday is on Saturday), but had been told that it likely wouldn't happen. SURPRISE! We truly dislike what it represents, but are pleased with how it looks. As Nikki was getting out of the truck to walk up, she said, "Want to talk to JJ", this is kind of shocking because she's only been there twice before. There was nothing really there for her to relate to JJ's presence. Please pop over to the CarePage for a picture.
There is currently a backlog in processing tax-exempt applications, so we feel no closer to having that authorization. This is disappointing because we have some ideas that we'd like to get started on - but we know FULL WELL that God's timing is perfect. So we will allow him to do what he does so well and have our fields prepared for rain.
Nikki has started back to school. She's a big girl now, in the 3 year old class. Dance and Religious Ed start next month, so her schedule is starting to fill again. Matthew is mobile and has been for more than a week now. He is not crawling as much as "inchworming". His arms stretch out, he pops up onto his knees, rocks a couple of times, then falls back onto his belly a few inches further forward. He then repeats this until he gets to the toy he wanted, the cables for the Playstation, or the air conditioner vent where he lets the air blow his hair. Maybe he just wants a convertible.
James 5:7-8 Be patient, then, brothers, until the Lord's coming. See how the farmer waits for the land to yield its valuable crop and how patient he is for the autumn and spring rains. You too, be patient and stand firm, because the Lord's coming is near.
11 August 07
Thank You
This post is in addition to the CarePages update.
Thank you to those who want to see www.icouldbeyourchild.org as accurate as possible. We received notifications today for all three children who have joined Jesus in as many days. We've said it before, I Could Be Your Child is not our site, we just update it. It belongs to the kids and those who care about them.
31 July 07
Six Months…
JJ has been gone for six months. In our home that is, literally, almost a lifetime. With Matthew’s arrival just 3 weeks before, we will always have a visual calendar to see how long it’s been. One year ago we were making final preparations for JJ’s birthday party at the water park and for his party at the train station. He was feeling wonderful and looked great. It was almost time for school to start again, 1st grade with one of his best friends in his class and a couple of others right across the hall. One year ago, things were going pretty well. Today, I miss him so much.
He’s been busy though. Welcoming some new friends to Heaven. Keeping a close eye on his brother and sister. Continuing to touch people’s lives. Making sure that we know he’s better than ok.
Nikki is ready for school to start, she wanted to get ready and go yesterday morning. Matthew has begun moving forward. Sometimes it’s a low crawl, more often he gets his knees under him and he lunges forward, not yet realizing that his hands need to move as well, so he ends up on his face a few inches further than he had been.
Last night as we were watching him, he looked over Jim's shoulder as if someone had stepped into view. He flashed a smile and then looked back at the two of us. Jim and I both followed to where he had looked and saw an empty bedroom door that leads into the hallway. Matthew went back to rocking on his hands and knees, looked up again to the same area and flashed an even bigger smile. The kind of smile he gives when he looks at JJ's pictures. Quick, bright and oh-so-happy. He was not looking at either of us nor were we making any encouraging sounds at the time. Jim and I again looked to where his gaze was and knew right then and there, children and even more so, young children are able to see things that we as adults cannot. Did I neglect to tell you that JJ’s room is directly across from Matthew’s?
18 July
A Gift...
Once again, someone we have never met, has been so giving of their time and
talents. Miss Danette has created a quilt of memories. I will be able to
spend my lifetime finding the caring details she included. Pictures of her
artwork have been uploaded to this site. Special thanks to Melissa for this
as it would not have been possible without you. (www.carepages.com - jjsmiraclepage)
Pictures of Nikki & Matthew have also been added. They continue to grow in
size, personality and ability. They are wonderful and both continue to love
their big brother.
The other children remain very much in our thoughts - James is preparing for
his MRI, Andrew has improved, and others continue their battles with scans
and treatments and hospital visits. Please let each of these families know
that they are not alone.
2 Corinthians 9:7 Each man shuld give what he has decided in his heart to
give, not reluctantly or under compulsion, for God loves a cheerful giver.
17 July
We think of and pray for the children and their
families on a daily basis. Today, I ask that the prayer efforts of all be
magnified. Of course, all the children have earned the right but I have to
ask for special intentions for Skylar~Jade as she is having a very difficult
time. I also ask for Andrew who was admitted to the PICU in Birmingham,
Brooke who is in the PICU in St Louis, Caleb who is struggling, Grant who is
struggling, Elena who is struggling. All these children are such fighters
and teachers. What a blessing they all are. There are also several children
with MRIs due this week. Extra intentions that the scans come back clear.
Praying for a spectaluar sunset this evening.
Only one new congressman on board for HR 1553. Nothing from the senate.
Rep Frank, Barney [MA-4] - 7/16/2007
Rich, I think we need to get a copy of your letters. You and the rest of the
fine folks from the Commonwealth are making a dent.
Nahum 1:7 The Lord is good, a refuge in times of trouble. He cares for those
who trust in him.
14 July
How Many Times?
Maria McNamara has joined the Lord.
She may have been welcomed with a bouquet of sunflowers or just the light of
the Son.
Please keep her family in your prayers.
13 July
Just a quick note for all parents out there. Even
those that aren't. Please check out this excellent resource link below. Type
in your address and see who might be living near you and your family. You
might be slightly surprised.....
http://www.familywatchdog.us/
Caution: This site only lists those that are registered.
Even though this link is not tumor related, I feel it should be posted for
others so we will add it to the "other resources" page.
Jim
12 July
Ya know, I like going to work at 5:30 in the
morning. Traffic is light, the office is quiet, but best of all is that I
get to witness God showing off. Huntsville is located right at the base of
the Appalachian Mountains and as I drive east on I-565, I am graced with the
beauty of witnessing the sun crest over the top of these mountains almost
every day. It really is a fantastic show and is given to us for free. God
shows us his beauty in some form each and everyday. You just have to
recognize it. The Howells said all along and I agree, “Watch the sunset”
(Wise words. Thanks Jim). I would even like to add to it if I may. Listen
and watch a thunderstorm. Feel the wind on your face during a warm day. Hear
the bubbling of a brook or the crash of the waves on the beach. Listen to
the birds as they waken and declare a new day. There is God’s presence and
peace in each and every one of them. I enjoy them all and will not take them
as background noise or a “for granted” sight again but if I get to pick a
favorite; it’s the sunrise. It is the erasing of yesterday’s trouble and
woes. It is the start of a new day....
Skylar-Jade, Brooke, Grant, Andrew,.... all of them..... are very much in
need of prayer. If you will, please remember the families. I truly do not
know how we would have traveled this path without His strength, wisdom and
peace. I ask that this be given to them as well.
Update on HR 1553. Co-Sponsorship is at 108.
Rep Ortiz, Solomon P. [TX-27] - 7/11/2007
Rep Jones, Stephanie Tubbs [OH-11] - 7/11/2007
Rep Cummings, Elijah E. [MD-7] - 7/11/2007
Rep Rush, Bobby L. [IL-1] - 7/11/2007
Rep Neal, Richard E. [MA-2] - 7/11/2007
Rep Bishop, Sanford D., Jr. [GA-2] - 7/11/2007
Rep Sanchez, Loretta [CA-47] - 7/11/2007
Rep Holt, Rush D. [NJ-12] - 7/11/2007
Rep Braley, Bruce L. [IA-1] - 7/11/2007
Rep Johnson, Eddie Bernice [TX-30] - 7/11/2007
Rep Lynch, Stephen F. [MA-9] - 7/11/2007
Rep Wamp, Zach [TN-3] - 7/11/2007
Rep McDermott, Jim [WA-7] - 7/11/2007
Rep Tiberi, Patrick J. [OH-12] - 7/11/2007
Rep Price, David E. [NC-4] - 7/11/2007
Rep Jindal, Bobby [LA-1] - 7/11/2007
Rep Barrow, John [GA-12] - 7/11/2007
Rep Davis, Danny K. [IL-7] - 7/11/2007
Rep Fattah, Chaka [PA-2] - 7/11/2007
S-911 has gained one more as well bringing the total to 30.
Sen Menendez, Robert [NJ] - 7/11/2007
Good numbers but when you start to break it down, this is only about a third
of our elected officials. Please keep the letters going out. For those in
Alabama, we have 8 representatives with only one stating his support.
Neither Senator has found the time. I am thinking about starting a petition.
Maybe if we can put many names on one sheet......
Jim
9 July 2007
More...
This disease continues
to cause heartache as we read that Dravin and Katie S. have finished their
battles. Other children continue to fight with more strength than we thought
they possessed or should every need.
Our Matthew is up on his hands and knees, rocking in obvious preparation for
crawling. I don't know that I'm ready for that yet. Our princess is up on my
lap, identifying letters on the keyboard, reminding me that her brother had
already been playing computer games. Guess we'll have to start sharing.
Isaiah 41:10 "Do not fear, for I am with you; do not be dismayed, for I
am your God. I will strengthen you and help you; I will uphold you with my
righteous right hand."
4 July 2007
Happy 4th of July
Happy Independence day
all! To our neighbors to the North, a belated happy Canada Day. To our
friends in England.... um, sorry. We still love ya though.
Since moving to Alabama, it has been routine for me every 4th of July, to
find my way to the largest firework outlet and gobble up enough things
(imagine me being in Lowes unsupervised) that go boom, crackle and pop for a
good half hour. Being in the county (country) we have free reign so they are
then set off right in front of the house. My main reason for the show was
that JJ loved watching it so very much. This year is different. I have not
made the trip this year nor will there be any show at our house. I would
love to use the excuse that it is because of the drought (yes, it is still
extremely dry) but that would not be entirely true.... maybe at the turn of
the year.
Have a safe, enjoyable holiday but I ask that you take a couple of minutes
to please pray for all the children and their families.
Romans 8:21 ~ The creation itself would be liberated from it's bondage to
decay and brought into the glorious freedom of the children of God.
John 8:36 ~ Jesus said, "if the Son sets you free, you will be free indeed".
2 July 2007
Taking a Break
We have not been posting here as much, we've used the CarePages site for notification. Yesterday Justin Bissett's body was laid to rest. His spirit was already in heaven.
Good morning all. I am taking some much needed couple of days off from the
job. Feels good to sleep in to almost 5:30 a.m. The family is doing well.
Nikki has had a busy summer with VBS and soccer camp. She is also still
going to pre-school a couple of days a week during the summer. Matthew is
growing in leaps and bounds. I said it before and I'll say it again, it
totally amazes us how close the similarities are between he and JJ. Diana
and I are getting by. We greatly miss our little man but in the grand
scheme, how can we complain? He is with the Lord for all eternity and that
is the goal every Christian has so I'll try and not be selfish, although
there are times I find that difficult.
The bills have gained some new sponsors. On the Senate side, S911 is up to
29.
Sen Cardin, Benjamin L. [MD] -
6/28/2007
Sen Sanders, Bernard [VT] -
6/28/2007
Sen Akaka, Daniel K. [HI] -
6/28/2007
Sen Bingaman, Jeff [NM] -
6/28/2007
Sen Schumer, Charles E. [NY] -
6/28/2007
Sen Inouye, Daniel K. [HI] -
6/28/2007
From the House, HR1553 stands at 89.
Rep Whitfield, Ed [KY-1] - 6/27/2007
Rep Altmire, Jason [PA-4] - 6/27/2007
Rep Lewis, Ron [KY-2] - 6/27/2007
Rep Olver, John W. [MA-1] - 6/27/2007
Rep Wynn, Albert Russell [MD-4] - 6/27/2007
Rep Boswell, Leonard L. [IA-3] - 6/27/2007
Rep Berkley, Shelley [NV-1] - 6/27/2007
Rep Myrick, Sue Wilkins [NC-9] - 6/27/2007
Rep Porter, Jon C. [NV-3] - 6/27/2007
Rep Langevin, James R. [RI-2] - 6/27/2007
Rep Sires, Albio [NJ-13] - 6/27/2007
Rep Rodriguez, Ciro D. [TX-23] - 6/27/2007
Rep Saxton, Jim [NJ-3] - 6/27/2007
Our sincere thanks for all the letters, e-mails and phone calls to their
elected officials. I ask that we not let up. Both are still in committee,
and as long as they are, there is a chance they may never make it to the
floors for a vote. I've my work still to do on both my Senators....
There are many children in need of additional prayers. All of them actually.
Please visit the "other kids" and drop a line of encouragement to the
families. We will be posting an update soon on the "other kids" and "lifted
up". If anyone happens to know of a child that we missed, please pass it on
and we'll get them on line soonest.
Jim
15 June 2007
Another Child Goes Home
Checking the children this morning and find that Leya Mathew had returned
home last night. My heart just simply breaks everytime..... Please drop by
her site and give her parents the support you have all shown us.
Speaking of support. I want to thank each and every one of you for being
there for each other. This road the children and families travel is the
hardest of them all and it would be so much more difficult if one stood
alone.
I try and visit as many as children as possible before work but at 71 "other
kids" listed and 167 "lifted up", I just cannot. Please know that I do swing
by as often as possible. Also, Diana and I try to keep up with posting but
we may miss a child. If you happen to notice this, please pass on the
child's info and we'll get them on the site soonest. The site does not
belong to us but to the children and their families so any input you may
have, please pass that on as well.
Jim
14 June 2007
Happy Birthday, Little Girl!
Nikki is now 3 years old. Wow. She had her birthday party yesterday with the neighbor kids; pleasant, low key (not as low key as last year when JJ helped her open her presents while sitting on our bed - we had recently returned from our first trip to NIH). Presents abounded. She has been enjoying the Curious George movie and dragging dolls and puzzles around the house since we got home from her party. Can't figure out where she got so much energy. Even having spent about 5 hours playing outside, she still didn't fall asleep until after 9 - we have no idea how that happened.
Matthew, other than last night (ugh), continues to be a joy as well. Many people have offered to watch him as Diana prepares for Vacation Bible School. He is content to be handled being quite the social lightning bug (butterfly is just too girly).
JJ, as you would expect, remains very much in our thoughts and hearts. He has also made the news again. The local Spirit section of the Huntsville Times did an article on his participation in the Madison AYSO league. Very nicely written.
Sunday could likely be a bit difficult as it is Father's Day, the next in a lifetime of holidays with JJ not here. To all of the men God has called to be fathers and especially those who are fathers to these special children - please, have a very blessed day.
Isaiah 54:13 All your sons will be taught by the Lord, and great will be your children's place.
9 June 2007
Hot & Dry
Good evening all. Sorry for not updating sooner but with the days of summer
upon us.... We appear to have the copious honor of being in the most drought
stricken area of the country right now. Heard yesterday we are about 18
inches below normal with no relief in sight. I really feel for the farmers
around here. If rain doesn't come soon the cotton crop is all but gone. Corn
already is.
As for us. We are doing about as well as can be. Of course there is not a
day that we don't miss our little man. When those times hit, we reflect that
he IS, without a shadow of a doubt, with the Lord for all eternity. And that
does bring us peace. Nikki and Matthew are both doing well. Nikki is growing
in size, vocabulary and is full of estrogen. Matthew turned 5 months
yesterday and is already rolling to and fro as well as trying to crawl. It
totally amazes us how much he looks like his big brother. Same smile, hair
cowlick, and mannerisms. Both are a joy and help during our more troubled
times.
Not much new on HR 1553 as there have been no new co-sponsors since last
post. S 911 on the other hand has had a jump of co-sponsors from 7 to 16.
Sen Stabenow, Debbie [MI] - 6/4/2007
Sen Whitehouse, Sheldon [RI] - 6/4/2007
Sen Lautenberg, Frank R. [NJ] - 6/4/2007
Sen Kerry, John F. [MA] - 6/4/2007
Sen Brown, Sherrod [OH] - 6/4/2007
Sen Carper, Thomas R. [DE] - 6/4/2007
Sen Johnson, Tim [SD] - 6/4/2007
Sen Wyden, Ron [OR] - 6/4/2007
Sen McConnell, Mitch [KY] - 6/5/2007
If you will, please keep the letters and pressure on those that have not
signed on. I have already pre-printed my next round of envelopes.
Jim
1 June 2007
Short Long Weekend
OK, so we're just now talking about last weekend, and it's this weekend already. Diana and the kids went to Montgomery for our niece, Kerry's, high school graduation, then came back and the whole family headed down to the Coast for Matthew's baptism. Thank you to everyone who made that a very special occasion.
We are still in the set up stages of I Could Be Your Child; there will always be papers to fill out and adjustments to be made to the website, but it seems as though things are progressing well. We sincerely thank those families who provide us with children to add, as we can't do it on our own.
Proverbs 16:9 In his heart a man plans his course, but the Lord determines his steps.
24 May 2007
Latest
Just a short message today to let everyone know that since 9 May, three more co-sponsors have signed on to H.R. 1553.
| Rep Delahunt, William D. [MA-10] - 5/16/2007 | Rep Doolittle, John T. [CA-4] - 5/21/2007 |
| Rep Allen, Thomas H. [ME-1] - 5/21/2007 |
Total now is 63. Please keep the letters going out to your reps. I think mine are getting tired of me and may just sign up to shut me up.
One additional senator has also signed as a co-sponsor to S 911.
Sen Graham, Lindsey [SC] - 5/23/2007
Total stands at 7.
In case you missed the below post. The new site is up and running. This site does not belong to us but to the children and the families of the past, present and future. Please take a look at it and if you have a suggestion to add to it, we would love to hear from you.
Jim
21 May 2007
The new website is LIVE!!!!
This organization has been created to increase awareness of pediatric brain tumors (primarily dipg), provide funding for research and provide support for children and families who have been diagnosed with a pediatric brain tumor. We are awaiting approval of 501(c)(3) status.
The new site will NOT replace jjsmiracle, as this is still our family's place to keep you informed on Life After... Some of the pages from this site will be taken down and maintained, instead on www.icouldbeyourchild.org. We sincerely hope that you will visit both pages. You will, of course, be able to access the other regardless of which site you are on.
18 May 2007
Two Years Ago
Pre-school graduation is tonight. What that means is two years ago we began reacting to the symptoms which had been creeping up on JJ. That was the night that Jim really noticed that there was something not quite right with JJ’s eyes. We had seen something in a picture a week before, but figured he was squinting because of the sun. The following week began 18 months of medical stuff. Pediatricians, ophthalmologists, speech therapists, physical therapists, occupational therapists, ENT’s, a cranio-facial consult, assorted radiologists, neuro-surgeons, pediatric neuro-oncolgists and finally neuro-pathologists.
How simple a time it was when it was when JJ just needed glasses.
I make attempts to regain the house from this past year and a half. Coming back from a trip and almost unpacking, cleaning out a car just to go someplace else. But when I start to do that and I go down another layer of stuff, I find something that makes the tears pour out of my eyes: pictures from his last weekend, his communication boards the OT folks put together for him, Christmas presents he never played with.
I miss my little boy.
JJ was watching last night as his baby Matthew rolled over for the first time. He’ll be watching tomorrow night when his Nika has her first dance recital. He’ll be watching tonight as one of his friends graduates pre-school.
1 Thessalonians 5:16 Rejoice evermore.
14 May 2007
Difficult
This is a very difficult post for me today. Many of the parents of children still fighting this monster may find this post to be uncomfortable but in the interest of finding the cure, is needed to be said. I apologize ahead of time for any inconvenience or discomfort this may bring.
As many of you know,
Diana and I have turned our focus to finding a cure for this ugly monster
that took JJ from us. We are determined to try and stop this from
happening to other children and their families. A large part of this
is staying in touch with the medical field and more specifically, Doctor
Warren at NIH/NCI. We asked her, "what is needed to help find the
cure"? Her response was ..... "awareness and tissue". Doctor
Warren has just started a pilot study of DNA
analyses (looking for multiple proteins rather than one specific marker).
If, in the event, a child passes and an autopsy is performed, anyone who
would like to donate their child's tissue
(paraffin-embedded blocks),
can contact the pathology department of the hospital where the autopsy was
performed and have them sent to her at the address below:
Kathy Warren, M.D.
National Cancer institute
Pediatric Oncology Branch
Bldg 10 CRC 1-3930
Bethesda, MD 20892-1104
We felt it important
that JJ contribute to this but please know that we respect the parents
decision, whatever that may be. I pray that no parent ever has to
even contemplate making it.
Doctor Warren is also continuing to do film consults/ second opinions free of charge (these were previously done in the Neuro-Oncology Branch but they no longer have a pediatric neuro-oncologist). These can be sent to the same address.
In addition to NIH/NCIs study. St Jude has a similar study (yes, JJ is a part of that as well). Taken from Tyler's Treehouse Foundation: "The Comprehensive Molecular Analysis of Tumor Samples Derived from Patients with Brainstem Glioma. This unique study, led by Dr. Alberto Broniscer, 901-495-5007, hopes to address the current lack of knowledge for this terrible tumor. The ultimate goal is to identify specific molecular targets for treatment".
Again, I pray that a parent never, ever, even has to contemplate such a decision as stated above.
Jim
13 May 2007
Happy Mothers Day
I wish to give a
personal thank to all you ladies out there that have brought such beauty
into this world. You mentor, teach, discipline, and so much more but most of
all, you Love. What a special gift God has bestowed upon you. I am in
agreement with Rich, a gift such as this deserves so very much more than one
day of recognition. Let us try and remember it's not how long we have loved
one but how deeply.
We have sadly added an additional seven names to the "other kids" page.
Please go by and give these families a word of support.
In Christ,
Jim
9 May 2007
Five more on board
Just a quick update to let everyone know that five more representatives have signed on to HR 1553 as co-sponsors. Sadly, mine is not one of them. Next stop............ me, in person at his office in Huntsville. Just as I did the other day when I received a generic "thank you, we'll consider it" letter from one of my senators. Here's the latest from the house and I'll work on S 911 this weekend as the bill stands at only 6 co-sponsors (for now).
| Rep Rothman, Steven R. [NJ-9] - 5/8/2007 | |
| Rep Wilson, Joe [SC-2] - 5/8/2007 | Rep Wicker, Roger F. [MS-1] - 5/8/2007 |
| Rep Moran, Jerry [KS-1] - 5/8/2007 | Rep McGovern, James P. [MA-3] - 5/8/2007 |
One other thing. Curesearch is rallying people to Washington June 25-26. Pulled this from their website.
Reach the Day: Conquer Childhood Cancer is our unifying call to the nation to fund the critical research necessary to cure children diagnosed with cancer. This national day of awareness will bring together children and adolescents with cancer, parents, families, friends, survivors, advocates and health care professionals from all around the country to sound the alarm for the vital need for a cure.
We must galvanize support in every community and every state, and in our Nation’s Capitol to send a strong message to our top decision makers to immediately halt federal cutbacks in cancer research. We need to make our cause – to “conquer childhood cancer” – an urgent national priority.
We are still recovering lost leave from JJs battle and will be unable to attend but if anyone happens to be in the area, I'm sure the more people banging on the doors, the bigger the message.
A blessed day to all
Jim
5 May 2007
Latest
All too often I start a diary entry by expressing grief over the loss of another child. Over the past week, another two children (that we are aware of) have been called home. Please visit Cassandra and Madison’s sites in the “lifted up” page and drop the families a word of support.
Last night and stretching into this morning, Limestone County had their relay for life. The final numbers are not in but it is understood that the County surpassed this year’s goal on fund raising by a large amount. For that matter, so did Diana. With the generosity of many, she surpassed her goal of $100 by raising $745. This placed her second in the county for on line donations. Our many thanks to all for your overwhelming support.
Speaking of support, I contacted Congresswomen Price’s office in reference to H.R. 1553. As many of you know, she is the one that introduced the bill and I made a general inquiry as to what we can do to help with the passage of this piece of legislation. It was suggested that we express our desire of passage of H.R. 1553 by continuing to write, or even better, call our congressional leaders office and talk to the staffer of Health or Children’s issues. It was also suggested that we contact the members on the Committee on Energy and Commerce (where the bill currently resides) and ask them to take the appropriate action for passage. For the ease of everyone, I have taken the liberty by placing the member’s names, phone numbers and web sites below. The names in larger font and italic signifies that congressional delegate to already be a co-sponsor of the bill. If you will, please drop them a line expressing our gratitude in supporting the children. I want to apologize if you think I am pressing this so hard but I do fear this bill will disappear into the black hole of committee and never re-emerge (happened last year) if we do not stay on this.
|
JOHN D. DINGELL (Michigan) Chairman of the full Committee; ex officio member of each of the six standing subcommittees 202.225.4071 http://www.house.gov/dingell/ |
|
HENRY A. WAXMAN (California) 202.225.3976 http://www.henrywaxman.house.gov/ |
|
EDWARD J. MARKEY (Massachusetts) 202.225.2836 http://markey.house.gov/ |
|
RICK BOUCHER (Virginia) web site not responding |
|
EDOLPHUS TOWNS (New York) 202.225.5936 http://www.house.gov/towns/ |
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FRANK PALLONE, JR. (New Jersey) 202.225.4671 http://www.house.gov/pallone/ |
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BART GORDON (Tennessee) 202.225.4231 http://gordon.house.gov/ |
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BOBBY L. RUSH (Illinois) 202.225.4372 http://www.house.gov/rush/ |
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ANNA G. ESHOO (California) web site not responding |
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BART STUPAK (Michigan) 202.225.4735 http://www.house.gov/stupak/ |
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ELIOT L. ENGEL (New York) 202.225.2464 http://engel.house.gov/ |
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ALBERT R. WYNN (Maryland) web site not responding |
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GENE GREEN (Texas) 202.225.1688 http://www.house.gov/green/ |
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DIANA DEGETTE (Colorado) 202.225.4431 http://www.house.gov/degette/ |
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LOIS CAPPS (California) 202.225.3601 http://www.house.gov/capps/ |
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MIKE DOYLE (Pennsylvania) 202.225.2135 http://www.house.gov/doyle/ |
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JANE HARMAN (California) 202.225.8220 http://www.house.gov/harman/ |
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TOM ALLEN (Maine) 202.225.6116 http://tomallen.house.gov/ |
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JAN SCHAKOWSKY (Illinois) 202.225.2111 http://www.house.gov/schakowsky/ |
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HILDA L. SOLIS (California) 202.225.5464 http://solis.house.gov/ |
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CHARLES A. GONZALEZ (Texas) 202.225.3236 http://gonzalez.house.gov/ |
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JAY INSLEE (Washington) 202.225.6311 http://www.house.gov/inslee/ |
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TAMMY BALDWIN (Wisconsin) 202.225.2906 http://tammybaldwin.house.gov/ |
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MIKE ROSS (Arkansas) 1-800-223-2220 202.225.3772 http://www.house.gov/ross/ |
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DARLENE HOOLEY (Oregon) 202.225.5711 http://hooley.house.gov/ |
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ANTHONY D. WEINER (New York) 202.225.6616 http://www.house.gov/weiner/ |
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JIM MATHESON (Utah) 202.225.3011 http://www.house.gov/matheson/ |
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G. K. BUTTERFIELD (North Carolina) 202.225.3101 http://www.house.gov/butterfield/ |
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CHARLIE MELANCON (Louisiana) 202.225.4031 http://melancon.house.gov/ |
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JOHN BARROW (Georgia) 202.225.2823 http://barrow.house.gov/ |
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BARON HILL (Indiana) 202.225.5315 http://baronhill.house.gov/ |
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JOE BARTON (Texas) Ranking Member of the full Committee 202.225.2002 http://joebarton.house.gov/ |
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RALPH M. HALL (Texas) 202.225.6673 http://www.house.gov/ralphhall/ |
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J. DENNIS HASTERT (Illinois) 202.225.2976 http://www.house.gov/hastert/ |
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FRED UPTON (Michigan) 202.225.3761 http://www.house.gov/upton/ |
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CLIFF STEARNS (Florida) 202.225.5744 http://www.house.gov/stearns/ |
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NATHAN DEAL (Georgia) Ranking Member of the Health Subcommittee 202.225.5211 http://www.house.gov/deal/ |
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ED WHITFIELD (Kentucky) 202.225.3115 http://whitfield.house.gov/ |
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BARBARA CUBIN (Wyoming) 202.225.2311 http://www.house.gov/cubin/index.shtml |
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JOHN SHIMKUS (Illinois) 202.225.5271 http://www.house.gov/shimkus/ |
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HEATHER WILSON (New Mexico) 202.225.6316 http://wilson.house.gov/ |
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JOHN SHADEGG (Arizona) 202.225.3361 http://johnshadegg.house.gov/contact/ |
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CHARLES W. "CHIP" PICKERING (Mississippi) 202.225.5031 http://www.house.gov/pickering/ |
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VITO FOSSELLA (New York) 202.225.3371 http://www.house.gov/fossella/ |
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STEVE BUYER (Indiana) 202.225.5037 http://stevebuyer.house.gov/ |
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GEORGE RADANOVICH (California) 202.225.4540 http://radanovich.house.gov/ |
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JOSEPH R. PITTS (Pennsylvania) unable to attain phone number http://www.house.gov/pitts/ |
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MARY BONO (California) 202.225.5330 http://bono.house.gov/ |
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GREG WALDEN (Oregon) 202.225.6730 http://walden.house.gov/ |
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LEE TERRY (Nebraska) 202.225.4155 http://leeterry.house.gov/ |
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MIKE FERGUSON (New Jersey) 202.225.5361 http://www.house.gov/ferguson/ |
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MIKE ROGERS (Michigan) 202.225.4872 http://www.mikerogers.house.gov/ |
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SUE MYRICK (North Carolina) 202.225.1976 http://myrick.house.gov/ |
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JOHN SULLIVAN (Oklahoma) 202.225.2211 http://sullivan.house.gov/ |
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TIM MURPHY (Pennsylvania) 202.225.2301 http://murphy.house.gov/ |
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MICHAEL C. BURGESS (Texas) 202.225.7772 http://burgess.house.gov/ |
|
MARSHA BLACKBURN (Tennessee) 202.225.2811 http://www.house.gov/blackburn/ |
As for us? We are doing well. Of course, JJ is constantly very much at the front of our thoughts but we are coping. Diana and I are in the process of creating a new site that is more centered on the children. We'll keep the name to ourselves for now. It is our hope to be able to supply information to any family that may be seeking information on DIPGs and other small things (shhh, I can't tell you right now). You can bet the "other kids", "lifted up" and "foundation" pages will be there though. It may have a slightly different look but they will be there. We hope to be placing a list of topics on this site soon but are also soliciting any thoughts on what you would like to see.
Jim
29 Apr 2007
Here's the Deal
NBC's Deal or No Deal casting bus was in Nashville yesterday. We went; it's about a 2 hour drive. They started seeing people at 10am and if you were in line at 1pm, you would be seen. We got in line at 1030am and left after our 20 seconds or so at 9pm. The plan, when we got there, was that Diana would "audition" and that Jim and the kids would hang out in the Opry Mills Mall. After 5 hours, Jim decided that if he was waiting there that long, by dingy, he was going to have his say, too. Our "hook" was that we would be keeping none of the money, but that it would all go to DIPG research. It's a bit challenging to be bubbly when your goal is to keep kids from dying (and in Jim's case - it's really hard to jump around with a toddler sleeping on your shoulder). The initial results are that neither one of us have been selected to go further in the process (the official "you're not who we're looking for phrase" is that we might hear from them anywhere from a week to a year.) You never know, the notebook we took up with one of JJ's orange t-shirts, the Awareness magnet, and some diary excerpts, just may land where it needs to and somebody will say "what a great idea". For now, it's something that we're proud to have done for the kids - as 10 1/2 hours standing in line is nothing compared to what these little champions go thru.
We have every reason to be very proud of Nikki & Matthew as well. They were with us yesterday. All day. There were, I believe, a total of four unhappy squawks from them. The first was Nikki when she couldn't ride on the merry-go-round (she rode it later), Matthew had one when Di was a bit slow getting his milk ready and another as we walked thru the door into the casting room. Nikki's second was when she was told (1/2 hour from the house) that she would have to wait until we got home before she could have her milk. That's it! A four month old and almost 3 year old were perfectly behaved for almost 14 hours. It was greatly appreciated by us (and those in line). It was also commented on by those in line. Nikki was pretty well content playing ring-around-the-rosie with the stroller. Matthew spent much of the day (and night) flirting with some of the ladies behind us. It seems we'll have to watch him as closely as we will his big sister.
Galatians 6:9 Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.
25 Apr 2007
Update on H.R. 1553
Just wanted to let everyone know that 3 more Representatives have signed on as co-sponsors. That takes us to 55.
| Rep Davis, Jo Ann [VA-1] - 4/23/2007 | Rep Waxman, Henry A. [CA-30] - 4/24/2007 |
| Rep Markey, Edward J. [MA-7] - 4/24/2007 |
Told you I was going to keep a close eye on this.
I have composed my newest letter to my esteemed Congressman and have already sent it out. I will be adjusting it reflect accordingly for both of my Senators.
Dear Congressman Cramer,
I am writing you to ask that you support and co-sponsor H.R. 1553 (Conquer Childhood Cancer Act of 2007). This bill was introduced to the House on March 15th of this year and has been referred to the Energy and Commerce Committee. A similar bill (Conquer Childhood Cancer Act of 2006) was introduced last year, which went to the same committee where no further action was taken. This is unacceptable and we cannot allow that to happen again this year. Each year about 2,300 children will die from cancer in the United States and I must inform you that my son (age 6) has already become part of this statistic. Imagine, having to call your own son, daughter or grandchild a statistic because there is no cure. (See www.jjsmiracle.com for his story).
H.R. 1553 proposes to authorize $150 million over 5 years to develop grants for Research Fellowships in Pediatric Cancer for clinical and translational investigators, to fund a population-based national childhood cancer database, and to award grants to childhood cancer organizations to raise public awareness, ensuring access to best available therapies for pediatric cancers. Action must be taken by this Congress. Children are dying and a bill that may assist the medical profession in finding a cure sits in committee? Where is the compassion of Congress? I have read your biography and accomplishments. You claim that.....
“In 1990, I took the fight for children in my own community to Congress. I drafted and passed the "National Children's Advocacy Program Act", a landmark law that established the Children's Advocacy Center program as a model for the U.S. Department of Justice in assisting communities seeking to improve their response to child abuse. I have been dedicated to providing funding to continue to expand the Children's Center program into new communities. My vision is to establish a program in every community that needs and wants one.
To raise awareness of the issue of child abuse among my colleagues in Congress, I co-founded and continue to serve as co-chairman of the Congressional Missing and Exploited Children's Caucus. This bipartisan coalition is made up of over 100 members of Congress devoted to helping find missing children and raising public awareness about child abduction. The Caucus has also played a major role in helping protect children from sexual predators on the Internet, including the passage of federal legislation to ban virtual pornography.
Most recently, I worked to shepherd House passage of the Adam Walsh Child Protection and Safety Act of 2006, Title I of which was the Cramer Sex Offender Registration and Notification Act of 2005. The Adam Walsh bill is a comprehensive bill that improves sex offender verification systems, expands notification requirements, and creates new criminal penalties for sex offenders who fail to register.”
You should be commended for this and other work for the children. Now is the time to step up again for the children. Place your name on the co-sponsorship list for H.R. 1553 and get it out of committee and on the floor for a vote. Or is the above quote just political chest beating?
I expect a response to the course of action you will be taking on this legislation. Should you have any questions, please feel free to contact me at ___-___-____ or e-mail at lookdaddy@knology.net.
Jim Lipski
This was sent to him via his official web page. Please feel free to provide feedback to the letter.
21 Apr 2007
Prayers
I need to start this with letting all know that little Cade Gettemy was received unto Heaven yesterday. Cade was 3. Please drop by his site and give the family some support during this most difficult time.
With this news, I'll not post about us other than we are doing well and are getting by. Also with this news, I figured now would be a good time to let you know what our elected Representatives/Senators are doing in support of H.R. 1553 and S 911.
H.R. 1553 is up to 52 co-sponsors. See below for who is on board in support of the children from the House.
| Rep Boucher, Rick [VA-9] - 3/15/2007 | Rep Boyda, Nancy E. [KS-2] - 4/18/2007 |
| Rep Capuano, Michael E. [MA-8] - 4/18/2007 | Rep Castle, Michael N. [DE] - 3/15/2007 |
| Rep Chandler, Ben [KY-6] - 3/15/2007 | Rep Culberson, John Abney [TX-7] - 3/15/2007 |
| Rep Davis, Tom [VA-11] - 4/18/2007 | Rep Doyle, Michael F. [PA-14] - 4/18/2007 |
| Rep Dreier, David [CA-26] - 3/15/2007 | Rep Edwards, Chet [TX-17] - 4/18/2007 |
| Rep Engel, Eliot L. [NY-17] - 3/15/2007 | Rep Etheridge, Bob [NC-2] - 4/18/2007 |
| Rep Ferguson, Mike [NJ-7] - 3/15/2007 | Rep Forbes, J. Randy [VA-4] - 3/15/2007 |
| Rep Fortenberry, Jeff [NE-1] - 4/18/2007 | Rep Gerlach, Jim [PA-6] - 4/18/2007 |
| Rep Graves, Sam [MO-6] - 3/15/2007 | Rep Green, Al [TX-9] - 3/15/2007 |
| Rep Green, Gene [TX-29] - 4/18/2007 | Rep Grijalva, Raul M. [AZ-7] - 3/15/2007 |
| Rep Hastings, Alcee L. [FL-23] - 3/15/2007 | Rep Higgins, Brian [NY-27] - 3/15/2007 |
| Rep Holden, Tim [PA-17] - 4/18/2007 | Rep Kennedy, Patrick J. [RI-1] - 4/18/2007 |
| Rep Kildee, Dale E. [MI-5] - 3/15/2007 | Rep Larsen, Rick [WA-2] - 3/15/2007 |
| Rep Marshall, Jim [GA-8] - 4/18/2007 | Rep Matsui, Doris O. [CA-5] - 4/19/2007 |
| Rep McCaul, Michael T. [TX-10] - 3/15/2007 | Rep McCotter, Thaddeus G. [MI-11] - 4/18/2007 |
| Rep Mica, John L. [FL-7] - 3/15/2007 | Rep Moore, Dennis [KS-3] - 4/18/2007 |
| Rep Moran, James P. [VA-8] - 3/15/2007 | Rep Murphy, Patrick J. [PA-8] - 4/18/2007 |
| Rep Musgrave, Marilyn N. [CO-4] - 3/15/2007 | Rep Pickering, Charles W. "Chip" [MS-3] - 4/18/2007 |
| Rep Platts, Todd Russell [PA-19] - 3/15/2007 | Rep Reichert, David G. [WA-8] - 3/15/2007 |
| Rep Reyes, Silvestre [TX-16] - 3/15/2007 | Rep Rogers, Harold [KY-5] - 4/18/2007 |
| Rep Ruppersberger, C. A. Dutch [MD-2] - 3/15/2007 | Rep Schiff, Adam B. [CA-29] - 3/15/2007 |
| Rep Sessions, Pete [TX-32] - 3/15/2007 | Rep Sestak, Joe [PA-7] - 3/15/2007 |
| Rep Shuster, Bill [PA-9] - 3/15/2007 | Rep Sutton, Betty [OH-13] - 4/18/2007 |
| Rep Terry, Lee [NE-2] - 4/18/2007 | Rep Upton, Fred [MI-6] - 4/19/2007 |
| Rep Van Hollen, Chris [MD-8] - 3/15/2007 | Rep Wexler, Robert [FL-19] - 4/18/2007 |
| Rep Wolf, Frank R. [VA-10] - 4/18/2007 | Rep Yarmuth, John A. [KY-3] - 3/15/2007 |
S 911 has 6 co-sponsors
| Sen Bunning, Jim [KY] - 4/17/2007 | Sen Chambliss, Saxby [GA] - 3/23/2007 |
| Sen Coleman, Norm [MN] - 3/19/2007 | Sen Hagel, Chuck [NE] - 3/23/2007 |
| Sen Isakson, Johnny [GA] - 4/11/2007 | Sen Lugar, Richard G. [IN] - 3/23/2007 |
Good numbers and going in the right direction but in order for certainty of this passing and it getting to the President for signature, we need a little over 200 in the House and just over 50 in the Senate. Maybe it's just me but I fail to see anyone from my great state. Hmmm????? I suppose I'll have to re-emphasis the issue to them. Can't say my next correspondence will be quite so tactful or kind in my wording to them as previous. I can to tell you that if they think I'll just go away over time would be a very bad political error on their part.
I also wanted to let everyone know that I try and visit the other kids on a daily basis. I'm not much in the way of leaving as many guestbook entries as I would like but please know that we do visit and are thinking of each and every child and their families.
Jim
17 Apr 2007
Has It Been So Long?
Either the last date was incorrect or it's been a really long time since we've updated.
From the number of push pins on the map - a lot of people find it as cool as we do.
The Limestone County Relay For Life is just a couple of weeks away - I'd like to thank everyone who has donated. I don't anticipate that the evening will be without emotion - as JJ won't be there for the survivor's lap, nor will he be across the complex playing T-ball (the A's have a game that night).
I realized the other day, that with JJ no longer a "cancer kid", kisses can make things better again. There's been a lot of kissing in this house - the almost 3 year old seems to have her mother's ability to bump into things or fall or get a scrape. We are very consciously NOT reacting to these occurrences - whereas 3 months ago a thud from the other room would have both of us there in a heartbeat.
Nikki is getting ready for her first dance recital, I still don't know how that's going to go over, but she looks good in the costumes.
Matthew continues to grow, as a matter of fact, my fingers no longer meet going around his chest.
Psalm 34:18 The Lord is close to the brokenhearted and saves those who are crushed in spirit.
6 Apr 2007
Most Cool
On the home page is now a map, a pretty cool one that we saw on Jeremy's page (thanks). Please add your "push pin" and photo.
It seems to have been a busy week, a couple of Relay for Life activities, a birthday, an Easter egg hunt, and other normal sorts of things that just seem to be part of life.
It is because of this week, more than a couple of years ago, that we know where JJ is and with whom (which is exactly what parents want to know about their children anyway).
May you all have a blessed Easter.
John 14:2-3 Jesus said, "In My Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am."
1 Apr 2007
Front Page (of the Sports Section)
The News Courier, Athens, Alabama
Sunday, April 1, 2007
In memory of No. 6
Photo
Caption: Jim Lipski throws out the first pitch during the opening ceremonies Saturday to start the Dixie Youth Baseball season. His son, a former player, was honored during the event.
Dad throws out first pitch as DYB honors his late son
By Scot Beard
As you approach the building housing the concession stand at the Athens Sportsplex, you notice three bulletin boards enclosed in glass behind the T-ball field.
At first glance, the contents seem rather ordinary. The case on the left contains schedules for the upcoming Dixie Youth Baseball games. The middle case contains more schedules and a photograph of a division champion team from a few years ago.
The last case contains a green jersey with a yellow 6 on the back. Below the jersey is a plaque dedicated to the memory of J.J. Lipski.
“J.J. was a good player,” said his former T-ball coach Miles Craig. “He always had a smile on his face.”
Lipski died last year from brain tumor.
He had a love for the game that is rare in children so young. Craig said Lipski had the biggest heart of all the players last season. Lipski would try hard to do his best every play, even though he couldn’t always keep up physically.
“He was a joy to coach,” Craig said. “If only all the players had a heart like J.J.’s.”
Lipski loved playing T-ball so much, his parents buried him in his jersey.
Moved by the story of such a dedicated and loved player, the organizers of the Dixie Youth program decided to honor Lipski this season.
During the opening ceremony, J.J.’s parents, Jim and Diana, were presented with the jersey and plaque. Jim also threw out the ceremonial first pitch to kick off the start of the Dixie Youth season.
“We made a replica jersey for them to keep,” said Kelly Kelsoe, the Dixie Youth Baseball secretary. “We are going to hang the jersey in the trophy case through the season.”
No other T-ball player will wear No. 6, because it has been retired for this season.
“It is wonderful what they did to remember J.J.,” Jim Lipski said. “They are a great group of people. I don’t know if I have the words.”
Diana said J.J. just wanted to play ball again.
It looks like a big year for Athens Dixie Youth Baseball. There will be 432 players participating.
Imagine if they all had a heart like J.J.’s.
Payment for The Pediatric Brain Tumor Awareness Magnets can be sent to the JJ Lipski Cancer Fund PO Box 2168 Madison, AL 35758. Cost is $5. Foundations and parents of those fighting brain tumors drop an email to jjsmiracle@knology.net for discount information.
31 Mar 2007
Here's the pitch
Just a quick note today.
This morning JJ was honored at the opening day ceremonies for the Athens Dixie Youth Baseball. It was very moving for both Diana and I when it was announced that they replicated JJs uniform shirt and placed it under glass at the ball field. The shirt is to remain there until the end of the year and it will then be offered to us. It was also announced that the A's have retired JJ's number 6 for this year. We were further honored with a plaque with all his team mates name on it from last year. The plaque is shaped like home plate and is very nice. This is also on display with the shirt. I will treasure the items mentioned and the memories of this day. Oh, I was asked to throw out the first pitch. Well, me being the ex-ball player of old, took the ball, did my infamous impersonation of a Hideki Nomo wind up, zipped it in towards home plate with my blazing 45mph fastball and................ promptly skipped it three feet in front of home plate. Okay there is one memory I would like to forget.
29 Mar 2007
In touch
All, we have been in touch with Washington (Capital Hill) in regards to H. R. 1553 & S. 911. I have had a couple of very informative conversations and received a couple of suggestions to help push the bills forward.
1. Keep contacting your representatives/senators. The e-mail system is fine but it was emphasized that regular mail gets attention much quicker and sends a stronger message. Logic is... "if they feel strongly enough to compose and write a letter, than they must feel strongly on the issue" which makes them sit up and take notice that much faster. Again, not a mandate but this is coming from someone on the hill that lives this everyday.
2. It was further suggested that in lieu of just asking them to support the bill, state something along the lines of "we know that you place children at the top of your concerns and expect that you not only support this great cause but actually co-sponsor it". By co-sponsoring the bill, it is very difficult for them to not vote in favor of it. It also helps that the more co-sponsors that are attached, the faster and better chance it has of getting out of committee (where too many bills languish and never get introduced) and onto the floor for a vote.
3. One other note. Draft a letter and get the local hospital oncologists to sign off in support of the act. By having these professionals in support, it increases the chance of getting action sooner.
Our prayers and intentions to you all.
Jim
26 March 2007
Pediatric Brain Tumor Awareness
As was mentioned on the 24th, we are waiting for the shipment of magnetic awareness ribbons to arrive. Here is what they will look like.
Proceeds from magnet sales will be used for research and awareness. We will be sending our research funds to NIH, c/o Dr. Kathy Warren specifically for DIPG work. Although what we send may not be much in the NCI coffers, we know that it will be used to fight the disease that took our son.
JJ's school, Creekside Elementary, planted a tree today in his memory. The plaque reads "JJ Lipski Class of 2018". We truly appreciate that he was honored this way and hope that by the time Nikki and Matthew start school there, that it will be well on it's way to its life as a beautiful shade tree.
Last week was not an easy one for our family. For Diana, it was the first time in Mississppi without JJ in almost 7 years. The drive home was also full of memories, including driving by the waterpark we went to last July, and the other one we were to have visited this summer. Jim was home alone, and when the truck pulled in the garage, there was only one little voice saying "Hi, Daddy!!"
It hurts.
25 March 2007
Conquer Childhood Cancer Act of 2007
Special intention please to Skylar~Jade, Chase, Elena and the Williams family. They are all in need of additional prayers and support.
Cutting and pasting an e-mail Anne Long (Andrew's mom) sent me. This is introduced legislation and has not yet been Congressionally funded. Too many bills never make it out of that big marble structure in the city on the Potomac. Let's ensure this one does. I ask all to visit the referred site and drop a letter to your senator/representative urging them to support and pass this legislation in an truly unprecedented way...... Rapidly. I will watch this one closely and keep all informed on it's status. If you wish to read the act as it is proposed, please go to www.thomas.gov. Enter the bill number H. R. 1553 (for the House) & S. 911 (for the Senate).
I am pleased to inform you that the Conquer Childhood Cancer Act 2007 was introduced in the House of Representatives on March 15th and in the Senate on March 19th. Now, we need everyone to help increase awareness of this bill to fund childhood cancer research.
This landmark legislation authorizes $150 million over a five-year period to:
§ expand support for biomedical research for pediatric cancer research;
§ establish a real-time population-based childhood cancer registry, which enables researchers to more accurately study the incidence of childhood cancers and long-term effects of treatments; and
§ provide funding for informational and educational services to families coping with childhood cancer.
We are most fortunate to have great bi-partisan Congressional leaders who have been instrumental in introducing this bill:
Rep.
Deborah Pryce (R-OH)
Rep. Chris
Van Hollen (D-MD)
Rep. Joe
Sestak (D-PA)
Rep.
Michael McCaul (R-TX)
Senator
Jack Reed (D-RI)
Senator
Norm Coleman (R-MN).
“We must launch an all-out battle against pediatric cancers,” stated Congressman Chris Van Hollen. Representative Deborah Pryce (R-OH) shared this message, “Clearly, a compassionate society, and one that is so abundant in its revolutionary research and advancement, can and should place a higher priority on combating childhood cancer – and that is what our bill does.”
You can read more about the press conference to introduce the bill on our website, as well as the websites of each member of Congress. With their leadership and our tenacity to secure the needed funding for childhood cancer research, we can reach the day when every child with cancer is guaranteed a cure.
Today, however, we must accelerate the effort to get members of Congress to co-sponsor or support this legislation.
Please contact your Members of Congress and ask for their support of HR-1553 (House bill number) and S-911 (Senate bill number). You can generate the letter on-line:
1. Go to our home page on www.curesearch.org.
2. Click on “write a letter now”.
3. Click on “Action Alert” at the top of the page (do this for both the House and Senate).
4. Follow prompts and then add your personal message and modify the content of this letter.
When you complete your communications, we encourage you to ask your friends, colleagues and business associates to join us in this effort. Please note the letter will change to a thank you if your member of Congress has signed on to support the bill.
Tricia Benson, Director of External Affairs, CureSearch National Childhood Cancer Foundation
24 March 2007
Latest.....
As many of you have noticed by now. I have added 41 more children (with no web link available) to the "lifted up" page. Even with no link available, I feel it to be very important that we remember those that suffered through this injustice. In the very near future, we will be adding an additional 33 children to the same page with their story available. We also have additional children that need to be added to the "other kids " page and this will be done soon. If anyone becomes aware of a child that we may have overlooked, please forward and we'll see that they are added.
Not much new for us. We continue on as best we can. Spring has sprung in Northern Alabama. The trees have budded, the grass is greening and the birds are singing. It's showing promise of being a scorcher this year. The weather is actually going to be on the warm side this weekend with temperatures ranging in the mid to upper 80s. I can't believe I'm contemplating throwing on the AC so early......... Ugh. We do need of some rain, and soon. Otherwise the cotton crop is going to be worse than last year.
Prior to JJ being diagnosed, I had heard or seen very little on pediatric brain tumors or the number of children it actually affected yearly. Time for that to change. We had some Ribbon Magnets designed and will be placing them up on the site soon. For those interested, they will sell for $5.00 each (covers shipping). All proceeds will go to research and public awareness. Diana does all the adding/transferring of the pictures on the site and is out of town this week so I am unable to display. Hey, I'm a guy with limited capabilities, okay? However, the "Prayers for Maria Foundation" has a picture available in the gift store for those interested in seeing what it looks like. I hope others don't mind but parents of children with a brain tumor and foundations can e-mail us for a special price. Diana and I have a couple of other thoughts bouncing around and will let you know if we come up with anything else.
Jim
18 March 2007
Katherine McVey
I planned on updating with some news that Diana and I have been working on but need to hold off that plan. Instead, for those that may not know, Katherine was called home this morning. Please visit her site and drop a word of encouragement to the family.
Jim
18 March 2007
Matthew McGowan
Making my daily
check of the "other kids" this morning and had my heart broken once again.
Posted on Matthew McGowans' site........
13 APR 98 - 17 MAR 07
I am sorry to inform everyone that Matthew's battle with this monster ended
around 5 o'clock this morning, he is now tumor free. I'm sure he has already
made many friends in heaven and is watching over all of us.
Why, Why, Why???
more info to follow...
The McGowans' were the first family that made contact with us showing us
that there were other kids besides JJ that were battling this monster. We
had actually met them one morning at the GKTW while on JJs wish trip but, at
the time, did not realize the relationship. These fine people hold a very
special place in our hearts and we share in their grief and loss. Please....
please visit Matthew's site and give them the comfort that you showed us. We
will miss you Matthew but know that you and JJ are now free to play and live
the way God meant you to live. God Bless you big guy.
Jim
10 March 2007
Relay for Life
"Jellybean" went Home today, on her 21st birthday. Please keep her family in your prayers.
Philippians 2:13 For it is God who is working among you both the willing and the working for His good purpose.
6 March 2007
Truly Touching
Mom here - Saturday was Pack 236's Pinewood Derby. I had never been to a Derby before, it was a fun couple of hours. The boys had some wonderful cars. We knew that JJ's memory would be honored (the JJ sticker on each car and this year's Pack Patch, see below). We had also provided some pictures to be put up.
What we didn't expect to see were green balloons on either side of the picture wall, or the computerized photo show on the big screen. Not always being quick on the uptake, I made no comment about only three cars being set up on the track for the first race. It was during the opening ceremony that it was explained that for the first race, lane 1 was left empty in honor of JJ. I cried.
The "Life After..." title of this page has a dual meaning:
- JJ's life after this one - the one where he is with God and healthy and continues to touch people
- Our life after the loss of a child and brother, life after living 16 months pretty much consumed by all things medical
James 1:12 Blessed is a man who endures trials, because when he passes the test he will receive the crown of life that He has promised to those who love Him.
25 February 2007
Getting by
Hey all. I figured I am way past due in updating JJ's page. Thought about it a ton, but every time I tried, the words just didn't seem to come. This site was originally set up as a way of keeping everyone that cared about JJ informed (and some therapy for me) but has grown beyond that. The hard part of updating the diary page is that it was more about JJ than ourselves. With JJ now healed, I suppose the diary page will be more on our "post-JJ" lives. So here goes.....
First of all. We're getting by. Can't and won't say that it's easy. JJ's passing left too big of a hole for us to not feel pain. BUT, Diana and I are learning to cope a little more everyday although I doubt the pain will ever really go completely away. To tell you the truth, I don't want it to go completely away. If it did, I fear the memories would as well and that is one thing I will never give up having.
Some of the things going on.
1. The church continues to support us on all aspects. A spaghetti dinner fund raiser and raffle was held to help defray medical expenses. Almost four hundred meals were served in the span of two and half hours and was a huge success. Thanks to all for coming out and supporting the family. A very special thank you to those who put so much effort into the event.
2. JJ's Cub Scout Pack (236) is holding the annual Pinewood Derby on the 3rd of March. They will be honoring JJ with a "JJ" sticker on each car and the patch given to all troops will have "In Memory of JJ Lipski, August 18, 2000 - January 31, 2007" on it. We are deeply touched by such thoughtfulness.
3. The Athens Dixie Youth Baseball League is also honoring JJ this coming year. They have many plans they are trying to make happen. One is having JJ's uniform replicated and placed under glass.
4. JJ's school (Creekside Elementary) is also planning a memory tree to be planted on school grounds in JJs honor. We were asked, what type we would like. Very easy answer. A Red Maple (both JJ's and my favorite). I'm hoping that I can convince Principal Scott (oh, I haven't discussed this with him yet, so if he reads this, um..... surprise?) of letting us place a name plate with the words "in Memory of JJ Lipski, Class of 2018" on or near it.
I think Spring is starting to show itself in Northern Alabama. The weather has warmed nicely into the upper 50s to lower 60s and the trees are showing promise of budding soon. So....... yep, two more red maples went into the ground on the backyard property line (nice living on an acre). That brings the total to eleven so far. I do have plans for an additional four to go on the property line, east side of the house. Oh come on! We live in the South. It gets HOT here. We can use the shade. :c)
With JJ now in heaven, we may not update the diary page as often as before but that does not change our resolve in finding a cure for this monster. We will continue to honor the children on both the "other kids" and "lifted up" pages. I have found an additional three children for the "other kids" page and a fourth was referred to us just yesterday. In addition, We have discovered an additional 72 children (going back as far as 1992) that need to be added to the "lifted up" page. No, it's not a typo. 72. Turns my stomach just typing that high of a number. Sadly, I would venture that these children don't even make up 5% of those diagnosed. Before we can add to the site, we need to expand our bandwidth so please bear with us. For those parents newly diagnosed and searching for answers (should they stumble across JJs site), we would like to supply the best information possible. If anyone has trial information, alternative treatments, medical contacts, or would like to supply personal e-mails (if you would like to share your experiences, etc), please drop us a line and we'll see that it gets posted. Further, any information we place on the site that may not be elsewhere, we hope that other sites/foundations will use it to help spread the word. Together, we can beat this thing.
20 February 2007
Another child
Please keep Leslie's family in your prayers. Today she joined JJ.
18 February 2007
Wonderful story
The below was posted on Kate Hrischuk's page yesterday. I'll let each and everyone of you decide for yourself how close to accurate it is as it applies to these children. Diana and I are doing as well as can be. No lies, it's not easy. But it does help when we read stories such as this.....
The Brave
Little Soul
By: John Alessi
Not too long ago in Heaven there was a little soul who took wonder in
observing the world. She especially enjoyed the love she saw there and often
expressed this joy with God. One day however the little soul was sad, for on
this day she saw suffering in the world. She approached God and sadly asked,
“Why do bad things happen; why is there suffering in the world?” God paused
for a moment and replied, "Little soul, do not be sad, for the suffering you
see, unlocks the love in people’s hearts.” The little soul was confused.
“What do you mean,” she asked.” God replied, “Have you not noticed the
goodness and love that is the offspring of that suffering? Look at how
people come together, drop their differences and show their love and
compassion for those who suffer. All their other motivations disappear and
they become motivated by love alone.” The little soul began to understand
and listened attentively as God continued, “The suffering soul unlocks the
love in people’s hearts much like the sun and the rain unlock the flower
within the seed. I created everyone with endless love in their heart, but
unfortunately most people keep it locked up and hardly share it with anyone.
They are afraid to let their love shine freely, because they are afraid of
being hurt. But a suffering soul unlocks that love. I tell you this - it is
the greatest miracle of all. Many souls have bravely chosen to go into the
world and suffer - to unlock this love – to create this miracle - for the
good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain
herself. With her wings fluttering, bouncing up and down, the little soul
excitedly replied, "I am brave; let me go! I would like to go into the world
and suffer so that I can unlock the goodness and love in people’s hearts! I
want to create that miracle!" God smiled and said, "You are a brave soul I
know, and thus I will grant your request. But even though you are very brave
you will not be able to do this alone. I have known since the beginning of
time that you would ask for this and so I have carefully selected many souls
to care for you on your journey. Those souls will help you create your
miracle; however they will also share in your suffering. Two of these souls
are most special and will care for you, help you and suffer along with you,
far beyond the others. They have already chosen a name for you. God and the
brave little soul shared a smile, and then embraced.
In parting, God said, “Do not forget little soul that I will be with you
always. Although you have agreed to bear the pain, you will do so through my
strength. And if the time should come when you feel that you have suffered
enough, just say the word, think the thought, and you will be healed.” Thus
at that moment the brave little soul was born into the world, and through
her suffering and God’s strength, she unlocked the goodness and love in
people’s hearts. For so many people dropped their differences and came
together to show their love. Priorities became properly aligned. People gave
from their hearts. Those that were always too busy found time. Many began
new spiritual journeys – some regained lost faith – many came back to God.
Parents hugged their children tighter. Friends and family grew closer. Old
friends got together and new friendships were made. Distant family reunited,
and every family spent more time together. Everyone prayed. Peace and love
reigned. Lives changed forever. It was good. The world was a better place.
The miracle had happened. God was pleased.
11 February 2007
I Miss My Son
Ok, let me just state it so that it’s not misunderstood.
I Miss My Son.
It’s hard to believe that it’s been a week since…everything. A week since we’ve updated, a week since his funeral (I don’t say that word very often – I don’t like it).
So many things have changed – the sounds and activities of the house, daily life (again).
Last week I looked at the tray of medicines and things JJ used to take and saw his pill box. I started to reach for it, thinking it was time for his steroids – then remembered that he doesn’t need them anymore.
I loved to hear JJ holler, “Daddy, play cars”, I haven’t heard it in two weeks.
It’s T-ball registration time here in Alabama – JJ was hoping that he’d be on the A’s again; I was hoping that, too.
Nikki was looking at a book of colors today. “JJ’s green” she said. Yep, JJ’s green.
Matthew is growing.
Life, as we knew it, has changed forever – but life does go on, so I’ll watch my daughter spin and dance and listen to my young son cry. As time goes on, I’ll be able to do more dancing and less crying.
But right now, I Miss My Son.
5 February 2007
A letter to my son
Hey Buddy,
The hardest, saddest and most difficult day of my life day was when I passed you over to our Lord. I doubt you remember but I lay on your bed cradling you with both arms around you as your mother sat at your side holding your hand. I felt and heard you take your last breath. I remember your heart slowing and then not feeling it anymore. Yes, that was by far the most difficult day of my life.
Today was the second hardest. For you see, your mother and I had to lay your earthly body to rest this morning. It was a beautiful day. Sunshine and not a cloud to be seen. It being in the low 30s, was on the cold side but that just brought our senses more into focus. Hey, do you realize that it was one year ago today that we started your wish trip to Disney? Now, you have completed the best wish trip of all. Your Uncles Mike, Tom and Alan helped me carry you to your final resting place. I don’t want you to be concerned about where you lay though. It’s a very nice spot with a couple of Oaks to give you shade. Your mother and I bought an additional two plots, one on each side of you. When the Lord calls us, it is our intentions to be placed on either side of you. Just like when the three of us snuggled in our bed.
I know you weren’t aware of any of this as our Father has taken all your troubles, sadness and concerns from you. You know…. that works for me as I have a pretty clear picture of your heart and if you had seen our pain, it would have troubled you and made you sad.
I think you also need to know that your mother and I made a very difficult decision. We want to know exactly what this monster was that caused you such pain. We know that it was a tumor but neither we, nor the doctors, knew what kind of tumor. In this aspect, we asked the hospital to do an autopsy of the brain and identify what type of tumor was present. With your gentle soul and kindheartedness, we also figured you would not want another child to suffer if there was a means to possibly keep that from happening so after the autopsy, Doctor Reddy was given permission to study the remainder of the tumor to see if they can further identify a way to battle this monster. Again, this decision was not an easy one to make but we knew that your brain was just in your earthly vessel and since your soul had already been lifted to paradise, we thought it best and figured you would too. Forgive me if you disagree. We pray that answers are found and that this monster is stopped.
Yesterday afternoon, we had a visitation for you. I knew there were many people that loved you but did not realize the number that you had touched. What an amazing impact you have made, not only to your mother and me, but to so many others. I’ll tell you little man, people flew or drove in from many points of the country to pay their respects to you. You had Melody come in from Wisconsin, Matthew’s dad (Rich) flew in from Massachusetts, The Howells and Longs (James and Andrews family) came up from Birmingham, and many, many more. Today, Greg’s dad (Uncle Don) flew in from Baltimore to say good-bye. For those that could not make it, the number of e-mails and best wishes are nothing short of overwhelming and much too numerous to mention. I imagine that the way you lived your life here on earth is pretty close to how God wants us to be in Heaven as many commented that it was you, who showed them how to live and love. I believe that to be true, not just as your dad but by the number of people paying their respects as being a testimony to that.
Last night, Nikki commented “JJ is playing in the snow”. This came right out of the blue and unprompted. Coming from a 2 ½ year old, I’d have to imagine that you gave her some insight on what you’re doing right now. I bet you make the best snow angel. I know you have no concerns but figured I’d let you know that you have taught her well. She has picked up taking care of Matthew in your absence. She is giving him a ton of attention, kisses, and yes, the index finger in his mouth.
Your mother, sister and brother, as do I, miss you very, very much. There are many times that we start to feel very sad about you not being with us. When these times come up, we go down to your room and look at the mask you had for your radiation treatment, or the cane you were given to help you walk, or the boot to help keep your ankle straight or even the brace for your wrist. This helps us to remember that you no longer need any of these things. We know that you are running, jumping, swimming, climbing trees, playing hide & seek, or just sitting by the most beautiful river and enjoying paradise. I remember talking to you about Heaven a couple of months ago. Remember when I told you that no one got sick in Heaven? I definitely remember your response. You looked at me with raised eyebrows and said…..“No Pills”? No sir. No pills.
Our time together had an immense impact on my life. The presence of your gentle soul brought me joy and comfort that I cannot even begin to put into words. You were, and still are, a great and wondrous gift from God. Thank you for being there.
Hey, you want to do me a favor? You know how I like to look up at the Heavens on a clear night? If you would, skip a star across the sky from time to time. It’ll make me smile.
Love ya big guy,
Daddy
PS – I almost forgot! Thanks for the two days of snow. Only about an inch stayed on the ground but you always knew how I just enjoyed watching it fall. Once again, you make me so proud of you. My boy, giving me his first gift from home!
2 February 2007
How many?
Just how many of these children need to pass before a cure is found? Jenna was called home this morning. Please visit Jenna's page and offer up prayers to the family.
2 February 2007
Unbelievable
I’m sorry folks, maybe it’s just me and the time my family is going through but can somebody, please tell me what has happened to our society!? When a horse (you know, a large, solid-hoofed, herbivorous quadruped, Equus caballus, domesticated since prehistoric times, bred in a number of varieties, and used for carrying or pulling loads, for riding, and for racing.) merits more attention in the national news than child with a brain tumor. They will use “merchandise sales, television time, its Internet site and other communications in support of the effort”. Gosh, I sure hope they find a cure for laminitis (the painful and often fatal “hoof disease”).
I’m disgusted.
US racing sets up Barbaro memorial fund
AFP
February 1, 2007
NEW YORK (AFP) - The National Thoroughbred Racing Association (NTRA) announced the creation of a Barbaro Memorial Fund to raise awareness and money for equine health and safety research.
The fund is in honor of the 2006 Kentucky Derby winner who was euthanized on Monday after an eight-month battle to recover from catastrophic injuries suffered in the Preakness Stakes.
A statement issued by the NTRA said much of the money raised for the fund would be directed toward research on laminitis, the painful and often fatal hoof disease that plagued Barbaro for much of his recuperative period.
It was when Barbaro's front feet began showing signs of laminitis that his owners Roy and Gretchen Jackson and veterinarians decided they could do no more for him.
The NTRA will organize fundraising initiatives at major racing events and venues this year, including the lead-up to the Triple Crown series and at the Triple Crown races - the Kentucky Derby, Preakness and Belmont Stakes.
The NTRA will use merchandise sales, television time, its Internet site and other communications in support of the effort.
"The outpouring of emotion and support from racing fans has been so amazing that we wanted to find a fitting way for those fans and our industry to honor Barbaro," said Alex Waldrop, chief executive of the NTRA.
"We consulted with the Jacksons and other industry organizations to see how we could bring our combined resources to bear in this endeavor."
Barbaro won the Kentucky Derby last May by the largest margin in 60 years but broke down barely 200 meters into the Preakness just two weeks later.
The colt never lost a race in which he finished, winning his first six races before he overwhelmed rivals at the Kentucky Derby.
"Gretchen and I hope Barbaro's memory can be carried on through advances in medical research, including a cure for laminitis," Roy Jackson said of the memorial fund project.
1 February 2007
It's Real
The reality of JJ's having passed was again made incredibly clear - when I posted my son's picture and a date on the Lifted Up page.
1 February 2007
Plans
I would like to
start by thanking everyone for their thoughts, prayers and well wishes for
JJ and our family. I would love to say that this has been painless for us
but I have yet to tell you an untruth and cannot start now. A huge void in
our lives was created with the passing of JJ. I suppose one of the feelings
is .... the emptiness of the house. Everywhere you turn, or everywhere you
look, the memories, at other times that would probably never surface, come
rushing at you. Every item, every touch, every smell has a distinct thought
that reminds you of our precious little man. He is deeply missed.
Yesterday, JJ had difficulty in his breathing, where he was taking a breath
and would then pause for about 3 to 5 seconds before taking another breath.
His oxygen was in the low 90s and heart rate level around 90 to 100. This
was the norm for the better part of the day. Nikki and Matthew showed up in
the late afternoon and when we placed Matthew in the crook of JJs arm, even
with him pretty heavily sedated, his heart rate immediately rose into the
130s. Oh yeah, he knew his little brother was there. After about 10 minutes,
Matthew started fussing and as we picked him up, JJ started having the
complications in which he never recovered. I think JJ waited for his sister
and brother to say good-bye. I truly do. I thank God for allowing me to
witness the absolute love that was displayed.
We miss you buddy but we also know that you no longer have any pain or
difficulties and that makes our pain bearable. Go, play, and have fun. We
love you.
We would be honored
with everyone, that has the desire, to come and celebrate JJ's life.
On Sunday, 4 February, between 2:00 p.m.- 4:00 p.m. Visitation will be at
the....
Madison Chapel Funeral Home
8521 Hwy 72 (just West of Balch Road)
Madison, AL
On Monday, 5 February, at 10:30 a.m., a Celebratory Service will be held
at....
St John The Baptist Catholic Church
1055 Hughes Road
Madison, AL
Upon completion of the service, JJ will be laid to rest in the Royal
Cemetery on Hughes Road, Madison, AL. We ask, but of course is not a
requirement, that all attending, wear an item of green, which is JJs
favorite color. We further ask that in lieu of flowers, donations be made to
the John Joseph Lipski Cancer Fund at any Colonial Bank.
31 January 2007
Home
Tonight as I
cried, the Heavens rejoiced with the arrival of another saved soul. At 6:01
p.m., as I held my son on earth, our Lord Jesus escorted JJ through the
gates of heaven. As we grieve please remember that God has wiped the tears
from him and he is now whole and without pain.
In loving memory of the bravest, kindest, most gentle hearted person I have
ever had the privilege to have known. Our son John Joseph Lipski (18 Aug 00
~ 31 Jan 07).
