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.

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

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.

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.

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.

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.

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.

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.

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

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

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

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.

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.

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.

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

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

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.

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

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

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.

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?

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.

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