23 April 2006

 

Quick note

 

Just a quick note to let everyone know that all is well.  JJ continues to show a continuance of strength that simply amazes us.  His voice actually seems louder and clearer than at anytime since last June.  It would also seem that his gait has increased and is noticeable while running the base paths.  His eye has not showed much of a turn in lately (maybe once this past week and that was for a minimal time).  We did have to reinstitute one thing.  JJs appetite dropped down to a point where we were not seeing him eat enough to sustain so we put him back on a half a Megestrol twice daily again.  We're not really trying to have him put on weight anymore but do want him eating enough to the point of healthy.  Overall, our big man is doing quite well and we are grateful to God for it.

 

Diana has restructured the site a bit to make things a little easier to navigate, or at least that is our intent.  Any suggestions on how the site can be better structured, please let us know and we'll give it a look.

 

Psalm 88:9 - O Lord, all my longing is before you; my sighing is not hidden from you. 

 

29 April 2006

 

Slight Decrease

 

You know, it feels like I just updated this page the other day and here I see it's been a week.  Sorry, for the delay, time just seems to be flying by in some aspects and totally dragging on others.  Going to take care of the baseball stats first.  Game last Tuesday.  JJ went 3 for 3 with 1 RBI.  Today's game showed JJ being moved up into the 5 spot.  Going 2 for 3.  For the year, my numbers show he's 13 for 16 or a .821 batting average and an on base percentage of .937.  Slumping some if you ask me.  Geez, so much for the 1.000 on base percentage.  He keeps this up and I'll have the coach sit him a game.  The A's have also maintained their perfect record as well.

 

JJ has showed no symptoms that we can identify since the last post.  Just one observation to note:  Sometimes it seems that he is looking but not really seeing.  I can't describe it.  Maybe like... the 1000 yard stare but yet, not quite.  It does not happen often or for very long (a couple of seconds) but we'll bring it up with the doctors during his next scheduled clinic.  All day today, JJ has been nothing short of fantastic.  Voice pretty clear, loud and full of energy.  His activity level is almost like before this all started and is wonderful to see.

 

Any of you remember the "that if we really, really, really wanted to be positive" (April 19th post)?  Well, we got the imaging report from Children's yesterday on the April 11 MRI.  I will quote:

 

RESULT:  Since the previous study, there has been a slight decrease in the size of the pontine glioma which now measures 3.2 x 2.6 x 4 cm in size.  With I.V. contrast, some very minimal contrast enhancement in the peripheral inferior aspect of the mass could be seen, but this is quite slight and unchanged.  There continues to be dilation of the lateral and third ventricles, but the extra-axial fluid noted previously in the right hemisphere has subsided and has returned to normal.  No new lesions are seen,  There is no evidence of metastatic disease."

 

October 20ths numbers - the mass measured approximately 3.6 x 4.9 cm in traverse dimension and 4.0 x 3.2 cm in the sagittal plane.

 

Math was never a strong subject in school and continues to this date.  BUT, subtraction is the one area that I am really liking.  Let's just keep right on breaking the numbers down, smaller and smaller and smaller and.....

 

I would like all to please remember the Gillette family in their prayers and further ask for all to take a knee in prayer for a clean return on Matthew McGowan's MRI, which is scheduled for this Wednesday the 3rd.

 

Psalm 4:2 - Answer when I call, my saving God.  In my troubles, you cleared the way; show me favor, hear my prayer

 

4 May 2006

 

Exploring

 

Just wanted to let everyone know that I think JJ is going to be a priest one day.  The other night, JJ had a very slight fever so we opted to keep him home from school yesterday.  While I was at work, I phoned home to remind his mother of Matthew's approaching time for his MRI but JJ answered.  He told me mommy was in the shower, so I told him to remind her to pray for Matthew, which he in turn, started praying.  Talk about warming your heart.  Later, we were at Kroger's and he expressed a strong desire to buy Nikki some flowers.  When asked why, he stated, "because I love her and want to get her something nice".  And then, last night, I asked him if he wanted to do his private prayer at the beginning of the nightly prayers or at the end (we have a series of prayers we do together but he does one "private prayer" that is between he and God).  Sometimes he shares with us, sometimes not.  Like I told him, "your prayer is between the two of you".  He chose "at the beginning" and started very softly, to the point that I couldn't hear him.  When he finished, he looked at me and said "I prayed for Matthew again".  This from a 5 1/2 year old and without being reminded since that morning!  Can we all say, Father JJ?

 

Game last Tuesday, JJ went 2 for 2, making him 15 for 18 on the year or a .833 BA.  On base percentage is now at .944.  Record remains unblemished.  I would like to thank the coaches of the As.  They ensure that all the children on the team participate, not just batting but in the field as well.  We may not win a game this year but at least these kids will come away with an understanding of the game and some basic fundamentals.

 

We are exploring further medical options/possible treatment but need to hold off saying what it is until we get an answer back from our query.  Which, we hope, should be by this weekend.  Will let everyone know when we know.

 

I ask for all to visit Matthew's page for his results and continue praying for all the children.

 

Acts 4:28-31 ....to do what Your hand and Your will had long ago planned to take place.  And now, Lord, take note of their threats, and enable Your servants to speak Your word with all boldness, as You stretch forth Your hand to heal, and signs and wonders are done through the name of Your holy servant Jesus.  As they prayed, the place shook, and they were all filled with the holy Spirit and continued to speak the word of God with boldness.   

 

       

7 May 2006

 

A Light?

 

JJ has been conditionally accepted for a trial at Cedars-Sinai.  With what we know right now, the biggest condition that has to be met is that 3 adults not have negative reactions to the protocol.  We have not read the protocol yet, but believe that this press release gives an idea as to what should happen. 

http://www.cedars-sinai.edu/pdf/MDNSIIL23CancerResearch022306-8842.pdf 

If this is not correct, we will change the information in a future post.  Of course, there are no guarantees on this but it does give us something we were in little supply of before ......... hope.  This is, indeed, a flicker of light at the end of the tunnel.  Those parents that wish to know what we have done to present or who we have contacted, please give us an e-mail and we'll tell you all we know.  We give thanks to God that He has given these men and women inquiring and intelligent minds that they are able to use their knowledge to help His people.

1 Corinthians 2:5 That your faith should not stand in the wisdom of men, but in the power of God.

 

The J. Smith Lanier Charity Golf Classic to benefit the Brain Tumor Foundation for Children is on Tuesday; we are looking forward to a wonderful day.  http://www.magnoliagolfgroup.com/brain_tumor/index.html

 

JJ had more people in his cheering section at yesterday's game; Grandma, Poppa and Uncle Alan from Mississippi came up to catch one of this season's games.  He went 3 for 3 with 1 RBI.  Thursday night was an off night going only 1 for 3.  Yearly average is now  19 for 24 or  .791 and an on base percentage of .884.

 

We join the McGowan family in giving thanks that the doctors believe that the swelling he's had recently is not the tumor growing.

 

11 May 2006

 

What a week

 

It has been one busy week for the big guy.  On Monday, we traveled to Braselton, GA for the Brain Tumor Foundation for Children's fund raising golf tournament.  I don't know the numbers raised but it had a very good turn out.  JJ had a great time driving the golf cart around the courses as well as hitting on the driving range and some practice putting.  We've a couple of nice photos that we'll try and post soon.  We were also able to meet some other children in similar situations as JJ and all seemed to be doing well.  Our thanks to all that attended, volunteered or supported this event.

 

On Wednesday morning, we turned our travels west, crossing back into CST and drove straight to Children's in Birmingham for his monthly clinic.  Doctor Reddy gave JJ a "you look great" diagnoses.  As of late, his eye has held straight.  Good sign.  JJ's latest battle is ear aches and some pain in his right ankle.  Ears will be looked at tomorrow.  It was his left ear on Monday and partially Tuesday and now this evening it is his right.  Taking ear drops has seemed to help but he'll be seen by a doctor tomorrow just to be sure.  JJ never complained of headaches in the past so we have concern that it may actually be headaches.  The ankle will also be looked at since I can not discern any swelling or contusions.  Has me scratching my head and therefore, troubling.  You could see him limping slightly at his game this evening but played through it going 3 for 4 (yes, stats time) giving him a .785 BA and making his OBP a measly .857.  With a drop in numbers like this he would earn extra sprints but I'll give him a break this weekend, I mean, he is in Chemo week.

 

Okay, scratch being seen by a doctor tomorrow.  JJ just woke up with severe pain in his right ear.  To the point that Diana has just left with him to go to the emergency room.  We had put drops in about an hour ago and even gave him some children's Motrin prior to bed.  Going to be a long night and the coffee is on.  Will let you know more when we do.

 

Colossians 1:11 - God will strengthen you with his own great power so that you will not give up when troubles come, but you will be patient.

 

12 May 2006

 

Passing the time

 

00:20 a.m. - Since I'm still waiting on a phone call from Diana on what JJs status is, I figured to put a couple of other things in the diary from this past week.  Bear with me if I ramble, not used to being up this late but it does get my mind off the single thought and is some pretty good therapy.

 

We were blessed at getting to meet Leslie and her mother at clinic yesterday.  Leslie is a wonderful little girl.  Shy and beautiful but yet you can tell she's a fighter.  Please keep the Schmidt's' in your prayers as Leslie is having a pretty rough time right now.

 

JJ continues to amaze us with his prayers and faith.  His private prayer continues to take longer to complete every night.  Last night he partially shared with us in that he said that he prayed for "Me, Matthew, James and the little girl (Leslie) we met today".  I say partially because I can faintly hear him from time to time saying "thank you".  Very tempting to ask what else he prays for but will not intrude or ask.  Whatever is said is between he and the Almighty.  It just boggles my mind on how a child of his age can have such a wonderful relationship with God and the manner, consistency and most importantly, maturity of his prayers.  He truly speaks through his heart.

 

It would appear that summer has been delayed a week here in Northern Alabama.  Temperature was only in the lower 70s today and dropping into the 40s this evening.  Forecast is for more of the same over the course of the next 5 days.  We'll take it while we can. 

 

Nikki is starting to sprout and is all girl with words forming and coming forth at a rapid rate.  {sorry ladies, told you I wasn't used to being up this late so you can't hold that statement against me  :c)}  She has also started to display the terrible twos a month early and talk about a temper.  Going to be some very interesting  teenage years.....

 

01:00 a.m. - finally, the call.  It would appear that JJ has an ear infection and some built up wax.  The ear has been cleaned out, shot of anti-biotic in the leg and is now resting (sleeping).  They are still at the hospital waiting for Children's on-call neuro surgeon to call back with recommendations for treatment of the infection since JJ is on his Temodar through Sunday.  Once upon a time I would have worried about an infection but when Diana told me the news, all I could think of was........ whew, that's all it is?  It's going to be a rough day tomorrow.  I know I won't be able to sleep until I know that JJ and Diana are home safe but Nikki has been recharging her batteries since 7:30 this evening.  Me thinks Diana and I will be playing "tag, your it" all day tomorrow........ er........ today.

 

Psalm 34:5 - I sought the Lord, who answered me, delivered me from all my fears.

 

16 May 2006

 

Game day

 

Okay all, nothing much to report from the medical side.  That in itself, pleases me greatly.  No news in good news.  A follow-up at the pediatrician on Monday showed the ear infection on the decline.  Wax is still present in the left ear and JJ is getting nightly drops of mineral oil to loosen it up.  No complaints on the ankle.  Other than that............. nope, that's it from the medical side.  After the evening/morning of the 11th/12th, I'll take it.

 

Ball game last night and tonight.  Last night, JJ had only one at bat which was a hit.  He then let us know he was tired and wanted to go home.  He was on the last day of his Temodar, quite cool and windy, so we called it early for him.  His coaches are the best and understood completely.  Tonight, JJ batted in the five spot again and had a 4 for 4 night with one RBI.  Hmmm........ average is ........... carry the 1 ........ um........ .843 (27 for 32).  On base percentage is 30 for 32 or .937.

 

Just one more week of school and the summer will be officially upon poor mommy.  Report card due on Monday.  Judging from his work he brings home, the dibels test (which he took way off the scale), I'd say he did very well this year and has been deemed ready for first grade. 

 

2nd John 3  Grace be with you, mercy, and peace from God the Father, and from the Lord Jesus Christ, the Son of the Father, in truth and love.

 

 

17 May 2006

 

Troubling

 

Not an easy day for JJ.  He threw up three times over the course of the day with the latest being right before bed.  Of course with nausea being a symptom we are concerned.  JJ doesn't appear to be running any type of fever and when asked if he is okay, he says "yes" but you can tell something is bothering him.  Can't get anything out of him other than he doesn't know why he is throwing up.  We have recently switched from Ruta to paw-paw and we're hoping that his body is just not taking the paw-paw well.  We know that the Ruta and Calphos was not a problem so we have discontinued him on said paw-paw as of this evening and back to the Ruta.  No complaints of headaches.  Balance doesn't appear to be any worse, eyes are still straight.  He has commented on "being itchy" all over.  Talked to Children's and they do not think it is anything to be worried.  JJ's explanation is "I think it's God working on me".  I can handle that but oh how I hate this thing!  We are forever changed.  Simply giving medicine to ward off a cold or fever has changed to constant evaluation.  Naps in the afternoon have now become "is he okay?  Is he displaying the symptom of fatigue?"  The hardest thing is knowing that JJ is worse off than we are and it is just not right for a child to have to be put through this.

 

Prayers went well this evening but while in the midst of them, JJ asked "when do we get small and go back to heaven?"  Answered the best I could with "when God calls us.  It might be me first, or mommy or you.  If I go first, I'll wait for you and mommy and Nikki.  God will probably call us back one at a time but when we get up there, we'll all get to be together again".  He in turn said "and if I get there first, I'll wait for you and mommy and Nikki and Tripper".  That stung a bit.  JJ then proceeded to ask "how do we get to heaven?"  Explained that "God sends an angel to take us and that is when we get small since we don't have to take our bodies with us."  Talked more about how in heaven there is no sickness and we get to go fishing, play baseball, golf and anything else we would like to do.  He seemed pretty satisfied with the answers and drifted off to sleep.  Again, it's just not right that a child of this age has to have things like this explained to him.  We all need to explain the works of God to our children the best we can but not like this, not under these circumstances. 

 

As you all can tell, I'm having a little trouble with all it this evening.  Don't worry, it's become more or less a common thing for me (kind of sad isn't it?) but like every other parent going through this, we always rebound and will continue to do so.  Diana is my rock and is always there for me.  I'm grateful to her for accepting my proposal those 10 years ago.  Using this page as my outlet tonight and thought I could share some of the frustrations this thing brings. 

        -    Anger that JJ (or any child) got this thing.  I say "thing" because the doctors do not know what it is (other than a brain tumor) or what causes it.  Can't do a biopsy so it will remain a mystery for now.

        -    Not knowing why.  How can one protect their child from something such as this?  You can't but that doesn't make it any easier. 

        -    Not knowing how or when this thing actually started growing in him.

        -    Not knowing what to do next?  Modern medicine is not a big comfort JJ has at this time. 

        -    Not knowing when the Lord is coming to do his work.

        -    Just...... Not knowing.  Not understanding.  It's hard folks, very, very hard but yet simplistic compared to what these children are going through.     

 

Please pray for all the children that are in need of the miracle and further pray for ALL the parents that are going through this for strength and peace.  It is used up quickly and is sorely needed.    

 

We take refuge in knowing that God's timing is always perfect but does it ever chew a hole in your gut waiting. 

 

Philippians 4:7   And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.

 

20 May 2006

 

Almost Summer

 

Friday was the End of School party, during which JJ got called out to have his picture taken.  It was news to us that he was chosen to receive the May Chief Award for his class.  Needless to say, we are quite proud of him.  He is also in possession of his Completion of Kindergarten Certificate - so our little boy is officially a first grader!  We will pick up his report card on Monday.  He still has a day and a half of school, but that's just to complete the required number of days; which with having missed so many because of radiation and clinic and such - he's nowhere near.

 

JJ and Daddy went fishing today on the Tennessee River- Mommy and Nikki watched.  About the only thing in the water that was caught was the attention of the 4 foot long copperhead which swam away after eyeballing them.  For those of you who know Diana, the fact that she did not immediately run screaming to the truck is a HUGE development - of course, she didn't see it until it was on it's way AWAY from where she stood.

 

Please continue to include the McGowan family in your prayers, as they are facing another battle in this war. 

 

Isaiah 65:24  And it shall come to pass, that before they call, I will answer; and while they are yet speaking, I will hear.

 

23 May 2006

 

Summertime!

 

It's summertime!  School is officially over until August 4th.  Even with missing 57 school days, JJ completed all his studies to the satisfactory level and has officially been welcomed to the first grade.  Bragging time...... I might have mentioned it in an earlier post but want to touch on his Dibels (Dynamic Indicators of Basic Early Literacy Skills).  In August, JJ was tested and showed average to slightly above average on all portions.  When tested again in April, he showed modest gains (slightly above goal) in every category with the exception of the Phoneme Segmentation Fluency.  The goal for Kindergarten is 25 and first grade 40.  JJ scored a 74.  Wayyyyyyyyyy off the chart.  Excuse me, chest was swelling with pride.  Diana and I are very proud of him and he is looking forward to the next level.

 

I want to mention that I believe JJ has surpassed the one year mark with this thing.  Although he was not diagnosed until October, he first showed signs/symptoms with his eye turning in (which we addressed) during his preschool graduation last May.  June showed a further fall in his speech pattern (which we addressed).  This, of course, does not fall within the textbook answer from the medical professionals but have to believe that if he has been fighting it for this long, he's going to win.  About the only observation we have had lately is one very brief turn of the left eye.  I mean brief.  Saw it, he looked away, looked back and it was straight.  June will bring us more information with an MRI and PET scan on what this thing is doing when we visit NIH.

 

Now, on to T-ball.  You didn't think I would forget about that did you?  Game last night.  JJ batted third and went 2 for 3.  It's a shame when you go two for three and have to say that his average has fallen to .828 (29 for 35), on base percentage is down to .914 (32 of 35).  Thanks Ms Donna (and the rest of the Creekside contingent) for attending the game.  It meant so very much to him for you all to attend.  Two games left.  Thursday at 7:30 p.m. and a make up the following Tuesday at 5:30 p.m.  Don't know what were going to do without baseball.  I suppose we'll have to revert to watching more which Uncle Alan has already taken care of for us.  Thanks Al.  He so enjoys the game.

 

Psalm 31:24   Be ye of good courage, and he shall strengthen your heart, all ye that hope in the Lord.  

 

28 May 2006

 

That was Interesting

 

I'll start the diary on an interesting note.  Everyone that knows me knows I'm somewhat obsessive with my yard.  Kind of my escape if you will.  We currently have very strong thunderstorms going through the area.  Lightning and thunder, pea size hail, lots of rain.  I had just gone into the garage to get an item when, lo, a car decided to drive through the front yard.  Where we live, you have to negotiate a curve (from either side) as you approach the house.  It's obvious this dingbat was not paying attention and lost the road.  God was on her side though as she narrowly missed a ditch, passed over the driveway, narrowly missed the mailbox (brick), kept traveling instead of breaking, and narrowly missed a deep ditch before getting back onto the road.  Kept right on going like it was nothing.  Meanwhile,  (remember, lots of rain) my front yard now has a new look.  Lovely. 

 

On to JJ.  No news is good news.  Showing no symptoms unless you call his afternoon naps a form of fatigue.  Game from Thursday had JJ going 4 for 4 with an RBI.  Average is now .846 (33 of 39) and an OBP .923 (36 of 39).  Last game of the regular season is Tuesday at 6:30 p.m. with tournament play starting on Thursday.

 

Diana and Nikki traveled to Montgomery for the weekend leaving just the boys home.  I cannot recall ever having just the two of us together for three whole days.  Enjoying it immensely.  Thanks for the opportunity Di.  The boys started the weekend by catching a Huntsville Stars (Milwaukee Brewers Minor league team) game on Friday night.  Saturday, we did a little "unsupervised" shopping at Lowes, caught a T-ball game for Payton (Ms Donnas little man), and started putting together Nikki's birthday present.  Today, we hit the Point Mallard Water Park.  JJ handled the slides (6 times) all by himself, caught some time in the Wave pool as well.  Wore us both out.  I had a two hour nap and he is still down (coming on 3 1/2).  Living room camping adventure tonight.  We were going to go fishing tomorrow but think we'll clean up the house from the potato chips and popcorn.

 

Okay, the rain has slowed down enough for me to go out and look at my new landscaping.

 

1 Peter 4:9, 10  Use hospitality one to another without grudging.  As every man hath received the gift, even so minister the same one to another, as good stewards of the manifold grace of God.

 

1 June 2006

 

Rained Out

 

Well folks, The season ended on a rain out.  A very fine southern thunderstorm hit the field about 45 minutes before game time.  Plenty of Lightning, wind and rain.  I'd guess a couple of inches at the field in a very short span of time.  We get home and not a drop.  Tonight was the first scheduled game of tournament but it was also rained out.  I suppose the above numbers will have to go in the books for '06.

 

JJ seems to be doing well.  Nothing that we can identify as a symptom.  I am grateful to all for the prayers as I am certain that they have made a difference with his unchanged condition.  Please keep them coming.  I do have to ask that we also take it up a level for Matthew.  Please visit his page and drop the McGowan's a line in the form of prayer.

 

Well, that's about it for the week.  Oh, did I mention that we found out yesterday that Diana is now carrying our third gift from God?  Yeah, I can still get knocked over by a feather.  Not expected but very welcomed.  Due date is late December early January.

 

Psalm 127:3,4  Lo, children are an heritage of the Lord:  and the fruit of the womb is his reward.  As arrows are in the hand of a mighty man; so are children of the youth.

 

11 June 2006

 

Doctor's Quote

 

I'm sitting here trying to figure out where I should begin on the news for the past week and suppose I'll start with a quote from Friday.  The doctor told us "This is the best you could hope for in regards to his condition".  Now, you're sitting there saying and that means??????? Well, let's go to the beginning. 

 

JJ (as did we all) traveled to Washington DC this past week and is now enrolled in a clinical study at the National Institutes of Health.  The study shows how an NMRS (Nuclear Magnetic Resonance Spectroscopy) (an MRI with additional software that reads chemical levels in the brain) and PET scan should be utilized in conjunction with one another as together they provide a more complete picture than either one can show alone.  http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=334841&version=patient&protocolsearchid=2196151 

In a nutshell, there is a ratio of two chemicals in the brain that the study is focusing on.  JJ underwent his NMRS on Wednesday.  His ratio is 1.39.  Is that good?  According to the doc in charge of the study, a ratio of less than 1 is normal, 2+ is bad.  Although it is not normal, in the scheme of things, we'll take it for now.  Comparison from "several" angles with his previous MRIs show no new growth of the tumor.  No shrinkage but no growth.  His PET scan was completed Friday morning.  If my understanding is correct, tumors feed off of sugar so what they did was pump him full of radioactive glucose and then monitored the tumor for intake.  We were originally told that the results would not be known until Monday but while JJ was still in recovery, Doctor Warren came in with a pretty big smile on her face and said "it's cold, very cold".  What that means is, there is no tumor activity.  Does that mean JJ is cured?  No, not yet.  The tumor is still there, it's just not active.  Doctor Warren stated the quote above and then went a step further with "short of a biopsy, looking at both the scan and the NMRS, I would venture to say that JJ has a low grade tumor".  That threw me some.  I always thought that all these children had the same thing.  A DIPG.  Which is true but they may have different types of tumors.  I guess that's the purpose of this study.  Since a biopsy is not recommended, putting these two scans together provides a clearer picture.  It did for us.  We also asked about the blood brain barrier and how much does it affect (hinder/slow down) the temodar treatments.  Told that temodar actually penetrates the barrier very well.  Could JJ have lucked out (if you could call getting a tumor lucking out) and have a tumor that can be treated by temodar?  Unfortunately, only time will tell.  Again, short of a biopsy, the doctors have to give it their best guess.  I think they are hoping this study can help give them that better guess.  We also asked if we should implement any special diet for JJ and were told that there are no restrictions or proven diets for his condition and to "give him a Flintstones chewable and let him eat what he wants".  I'm not saying that there is not a diet out there that may not work.  Just letting everyone know what was said in response to our questions.  I think it all comes down to the fact that everyone of these children are remarkably similar but yet completely different.  Bottom line statement from the doc for us was ....... "just keep doing what you've been doing".  I did refer to some of the "other kids" (no names) during my questions and was told that NIH cannot solicit for the study.  I do encourage all parents to look into the link and the study. 

 

Now, this past week wasn't all just hospital and needles (which were handled even better than usual - not even one OW!JJ has become a firm believer in the use of the numbing cream).  We met up with some old friends and caught an Orioles game on Monday.  The Orioles organization gave all of us field passes for batting practice, as well as some very nice seats in lower box (about 20 rows up behind home plate).  During BP, JJ was able to acquire four autographs on a ball.  Brian Roberts (2B), Rodrigo Lopez (SP), his favorite active player ~ Melvin Mora (3B) and one of the Orioles announcers.  Goes by the name of..... um..... oh yeah, Jim Palmer (Hall of Fame, 1990).  Orioles actually won 4-0.  We also met up with Uncle Mike and Aunt Jill and caught a Phillies - Nationals game on Friday evening at RFK.  Two hour rain delay had us leaving in the 6th.  Didn't get back to NIH until midnight.  I know JJ has no problem with his appetite.  Had a hotdog, ice cream, popcorn and cotton candy.  A very good time was had by all.  In between the ball games, JJ and Nikki got to visit some of DC's museums and memorials.  This was easy to do with a Metro stop (subway) at NIH. 

 

I would like to extend our appreciation for everyone who had a hand in making this medical adventure an enjoyable experience.  The staff at the Clinical Center were incredible and very focused on their patients, the staff and volunteers at the Children's Inn said time and again that the kids who come "are why we're here".  The Orioles organization provided a rare opportunity, and the thoughtful gifts from family and friends just helped to make this visit very special.

 

1 Peter 1:3  Blessed be the God and Father of our Lord Jesus Christ, which according to his abundant mercy hath begotten us again unto a lively hope by the resurrection of Jesus Christ from the dead.

 

15 June 2006

 

Chemo Week

 

Just a quick note to let all know that JJ had his monthly check-up with Dr. Reddy at Children's on Tuesday where he was given a "you look outstanding".  Since we were just at NIH last week, this was expected but is always very nice to hear.  With the monthly check-up comes the five days of 150mg of Temodar.  JJs energy level has been very good but we do expect him to slow down some during this week with the medication.  Hopefully not too much since we've plans on getting out to the water park Friday afternoon after work.  The only signs JJ has displayed is some turning in of his left eye from time to time.  I did ask Dr. Warren at NIH about this and she stated that he may have had some nerve damage from either the original tumor growth or from the radiation treatment.  I guess this trial has made me stronger as well since once upon a time I would have been very bothered by this news.  Now?  We will correct that problem once we get by this one.

 

A happy birthday to Nikki.  Our little girl is no longer a baby turning a very much two year old yesterday.

 

Please visit the "Other Kids" section of this site.  Too many times we focus on things that are just important to us and miss the overall picture in the process.  This "thing" does not care who it effects and these other children have and deserve better than what they are going through.  Special prayers for all of them with an extra emphasis to Matthew.  God bless you big guy.  It was my extreme pleasure and honor to have actually spoken with you in Orlando.  You made an impression on me during our brief conversation and I am grateful to you for it.

 

Philippians 4:7  And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.

 

17 June 2006

 

Quick post

 

Just a quick post wishing all Dads a happy fathers day.  Relax and be pampered. 

 

JJ (as well as mom and dad) had a great time yesterday at the water park.  Wave pool and the tube slide (10 times) wore us all out.  JJ had a ton of energy and ran most of the way up the hill almost every time.  Very impressive for any child and with it being in the middle of his temodar cycle........ wow.  He does not run as well as he should for his age and you can see that the eye is acting up (which still gives me great concern) but his energy is wonderful to see.

 

Just a reminder to all parents that Mike Curry has created a forum where we can discuss/exchange ideas or just vent on this "thing".  He has given us a great tool and think it would be beneficial to use.  I know I am always open to ideas.  Please go to  nomorewasteddays.com (about half way down on the right).   

 

 1 Timothy 2:3,4  For this is good and acceptable in the sight of God our Savior; who will have all men saved, and to come unto the knowledge of the truth

 

22 June 2006

 

Glasses

 

Since the last post, JJ had some more frequent turning of his left eye.  Sunday evening seemed to be the worst so we pulled out his glasses (from last year before diagnosis) and asked him if he saw better with or without them.  Little man said that "I think a little better with them" so we have him wearing them on a much more regular basis.  Since then, we have not noticed the eye turn in hardly at all.  Nice and straight.  Is this a fix?  Don't know but the results to date are good enough for me.  He wears them without complaint and makes my job of enforcing quite easy.  No other symptoms apparent.

 

Good news on the "other kids" page.  Matthew McGowan is home and the placement of the shunt appears to have been a success.  Kate Hrischuk had an MRI today which showed no new growth.  Andrew Long also had a very good response to his Chemo and is doing quite well.  I'm relieved on the news from all.  Please visit their pages (as well as all the others) and even a bigger visit in the form of thanks to the man upstairs.

 

Diana had her first real visit to the Doctor in regards to her recent change in condition.  Yep, There's a baby there.  Heartbeat strong and all looks good.  Measurements place the due date sometime around the 22nd of January.

 

John 16:33  In the world ye shall have tribulation: but be of good cheer, I have overcome the world.

 

26 June 2006

 

Where has the time gone?

 

You blink and realize that almost a week has gone by with no update, sorry.  Last week was Vacation Bible School - so after Jim headed to work everyday, the kids and I would pack up and go to the church.  This year's theme was Fiesta!  JJ  spent each morning with his crew leader (the goofy guy), Nikki was in the nursery, and Di was singing and playing.  It was a fun week and during Friday's Finale, the parents are all invited to come and see what the kids learned, JJ stayed with his crew and was jumping and spinning and clapping with the rest of the kids.  This is a change from last year as he chose to sit with Jim in the bleachers - once again, we are very proud of him and can see how much he has grown and matured in just a year.

 

Thursday night was his end of T-ball season party.  It was held at a teammate's home and the kids spent most of the evening in the pool.  They did have to dry off twice - once to eat and once to receive their trophies.  It was a fun season - JJ has already begun talking about playing next year.

 

Saturday JJ and Di went on a date.  He took her to go see Cars.  We found out at bedtime that it wasn't just us enjoying the show; sitting next to JJ was George (JJ's Guardian Angel) and on the other side of George was God.  They seem to like the movies, because when Jim and JJ went to see Over the Hedge yesterday, they were there again.

 

Zephaniah 3:17  The Lord thy God in the midst of thee is mighty; he will rejoice over thee with joy; he will rest in his love, he will joy over thee with singing.

 

 

29 June 2006

 

Goings On

 

JJ has now gone to see Over the Hedge twice; his favorite line is "Play?".  If you haven't seen the movie, you'll need to - if you have, you know why this one word can make a 5 year old belly laugh.  A sound that is wonderful in our ears.

 

Currently in development is a JJ's Miracle Cookbook, please visit the cookbook page for information about it - as we would like for you all to be involved.

 

We would like to see you at JJ's Battle of the Bands; an event being set up in Montgomery.  The plans are for this to be a truly wonderful day with lots going on.  The contact for this is Cheryl Gallagher, cmommytime4@aol.com.  She would love to hear from you.

 

Jim and JJ have begun a nightly routine which just helps each day end in a special way - at 8 o'clock, they go out and catch fireflies.  There is one, in particular, who is JJ's new friend.  He sits on his ear and whispers something to JJ, he sits on JJ's finger and goes up in the tree house.  Then, when it's time to leave, he makes sure to blink goodbye.  What a wonderful childhood memory to have.

 

Isaiah 55:12  For you will go out with joy and be led forth with peace; The mountains and hills will break forth into shouts of joy before you, And the trees of the field will clap their hands.

 

 

4 July 2006

 

Happy Independence Day!

 

We have returned from our quick holiday weekend on the coast.  We spent some wonderful time with family at the waterpark, on the beach for last night's fireworks (kind of a reserved display - not knowing what bans may have been in effect) and a shrimp boil.

 

JJ and Nikki had a blast playing with cousin Olivia and Grandma and Poppa's dog Buddy.  We're not sure who is more exhausted - the kids or the dog.

 

Katrina's effects are still very evident on the Mississippi Gulf Coast.  While the clean up is well underway - there is still a great deal to be done before the lives of those affected are returned to normal.  In many cases, normal will not include family heirlooms, personal keepsakes and photographs.  Once the new building codes are finalized, JJ's Uncle Alan shou be able to start building his new home; his lot has been cleared and his old home's foundation removed.  We ask that in your prayers you remember all of those whose life this storm has touched; as so many communities remain devastated and overlooked by many news organizations.

 

More progress has been made for JJ's Battle of the Bands.  We are still in need of your recipes for JJ's Miracle Cookbook.

 

Please be sure to check out the other kids pages as the Lord continues to work with all of these children.

 

Here's hoping that you have had a safe 4th of July!

 

Proverbs 24:3-4  By wisdom a house is built, and through understanding it is established; through knowledge its rooms are filled with rare and beautiful treasures.

 

6 July 2006

 

Sleepless

 

Having one of those sleepless nights.  Can't really tell you why but am grateful to God for the coffee bean.  I'll need it today since I've been up since 12:45 a.m.

 

JJ is doing quite well.  Since we started back with the glasses, his eye has stayed relatively straight and he has shown no other symptoms.  In fact, his energy level seems to be at an all time high.  Running, jumping, playing and being a great big brother to his sister.  Nikki is at the age where she follows JJ everywhere he goes and wants to do everything he does.  For the most part, he accepts her and tries to teach her but there are times where he would rather she not destroy his cars.  It gives both Diana and I great joy to listen and watch the two of them together. 

 

Hard to believe but school kicks off in less than a month.  JJ is looking forward to the first grade and seeing his friends on a more regular basis.  He has also expressed the desire to play soccer this fall.  His balance is still not 100% but not bad either so with his desire, is enrolled. 

 

I've been reading up on the "other kids" and would like all to please add Naomi and Katya to your prayers.  People in the past have asked me "how do you do it?".  "How do you handle it?".  Love and Faith is the best response that I think I can give but I think the real question should be "how do they (the children) do it?"  These innocent children are fighting the most horrible thing imaginable and show more strength than I can ever muster.  Remember, this "thing" does not effect the child's thought process.  They are just as smart, quick and cognizant as before diagnosis.  They analyze just as much, if not more than we do.  So, the question really does need to be... how do they do it?  The strength has to come from God.  I'm sure everyone has seen/read the writing "footprints".  If not, read it.  I believe it and bear witness to it everyday.

 

John 14:27  Peace I leave with you, my peace I give unto you:  not as the world giveth, give I unto you.  Let not your heart be troubled, neither let it be afraid.

 

8 July 2006 

 

No words

 

I've no words for the latest update.  Please visit Naomi's site. 

 

John 14:2,3  In my Fathers house are many mansions:  if it were not so, I would have told you.  I go to prepare a place for you.  And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may also be.

 

13 July 2006

 

Nashville

 

Sorry about the delay in updating.  The work had me in Nashville all week for training and was away from the computer.  JJ, Diana and Nikki joined me for my week away and definitely made being away from home much easier. 

 

JJ continues to amaze us.  He took no naps all week but had the energy to run (as in sprint) up and down the hallways of the hotel, swim for hours on end, walk the Opry Mills Mall (every night) without running out of gas and visit the zoo a couple of times.  Both he and Nikki stayed up well past their bedtimes every night.  Diana and I were both grateful when they did go down since we were dragging by the time they did.  His appetite is also way up.  A good sign since we have not supplemented this for over a month.  Although I mention the good signs, we did notice that his left eye starts to stray not long after his glasses come off.  It also seems that his speech pattern is not as clear as it has been.  He still is much better than when this all started, it just doesn't seem quite as clear as I've grown used to.  I'm hoping it's just because he has been running on full throttle for a week straight and is worn down.  I suppose we'll know more on Wednesday.  JJ is scheduled for his next MRI at 4:30 p.m. on that date and any additional prayers at that time would be greatly appreciated.  We'll try and post the results that evening or the next day.  Of course it will also be the start of the next Temodar cycle and anticipate a drop in his appetite.

 

I do ask, that while checking in on JJ, that you also drop by the "other kids" and say additional prayers for all of them.  Let us include the children that we are not aware of.  This thing effects 150-200 children a year in the U.S. and each and everyone of them deserve and have earned the right to as many additional prayers that we can possibly supply.

 

James 5:16  The effective, fervent prayer of a righteous man avails much.  

 

18 July 2006

 

Big Day 

 

JJ's appetite and energy level is astounding.  He is donating his wagon to Children's Hospital and we were repainting it and touching it up yesterday.  JJ stayed in that very hot (backyard thermometer showed 106) weather helping me for a good two hours (now don't go calling social services on me.  We kept up on the liquids and were in the shade) and when it started to get dark, instead of wanting to come in, he states "it's cooling off now, can we play tag?".  Well, he wasn't lying, it was cooling off (down to about 90!).  Yard sprinklers came on so off we went playing tag well into the night.  Just a total joy to see this kind of energy coming from him.  His running, jumping and laughing is great medicine for Diana and myself.   I do have to note though that yes, JJ's speech appears to be in decline.  He can still be understood but is noticeably down in clarity.  As to his eye, as long as he stays in his glasses, the left eye does not appear to turn in too badly (if at all).  Please don't forget about tomorrow.  Big Day with the MRI.  I am soliciting as many prayers as possible for him at 4:30 p.m.  After JJ, please stay in the bent knee position and offer up additional prayers to all the children effected by this (or similar) thing with an extra special minute for Matthew and Andrew.  In our extended circle of acquaintance there are a couple of newborns who are in need of your prayers, as well: Sierra in Bethesda and Ashleigh in Birmingham.  I believe that Prayer does make a difference and I don't think it's not to much to ask for a couple extra minutes of your time, is it?

 

I've given this situation JJ is in a lot of thought.  Now, I'm pretty sure all reading this is of a Christian faith and we all know that it is not God's will for these children to have to go through this.  So?  How did it come to this?  Nine months of confusion, anger, sadness, despair and any other emotion you would like to throw in there brought me to think that Satan is using these children.  Not to get to them, their souls are already written in the book of life and are protected by God.  So, if he cannot get to them, he must be using them to get to us.  Sorry bad guy, you lose.  Matter of fact, since God has already denied you our children's souls, I'm asking/petitioning God to deny you their bodies as well. 

 

James 4:7  So submit yourselves to God.  Resist the devil, and he will flee from you. 

 

 

20 July 2006

 

The Results Are In

 

The delay in posting JJ's MRI results comes from the fact that it didn't get finished until after 5 yesterday evening.

 

 According to the doc, "It looks how it looks since radiation".  She also said that the signal intensity has not changed - it doesn't look angry like the diagnosis MRI.  Pretty much this means another stable reading.  Pretty much, because if they look and measure very closely, there may be a 1mm increase in one direction.  This is within the range of error (ie. head positioning in the machine).  The reason they looked closely enough to find 1mm is because we had noticed JJ's eye turning and the slight deterioration in speech.  Both of these changes can be attributable to the effects of radiation, which can show up 6 months to a year after. 

 

We truly thank you all for the prayers which have been sent on JJ's behalf and we know that they are heard and effective.

 

1 John 5:14-15  This is the confidence we have in approaching God: that if we ask anything according to His will, He hears us.  And if we know that He hears us - whatever we ask - we know that we have what we asked of Him.

 

25 July 2006

 

The News

 

JJ & Nikki have a new cousin.  Amelia Hope was born today!  Our love and congratulations to Uncle Tom, Aunt Jacquie & Cousin 'Livi.

 

WSFA (the NBC affiliate in Montgomery) aired two segments this evening about JJ and the Battle of the Bands.  Aunt Cheryl was interviewed and Grandma even got a few seconds of camera time. The piece that made the WSFA website is very well done and we truly appreciate the station's assistance in making more people aware of how ugly this tumor is.  The first segment has been uploaded on the station's website. WSFA - JJ - 7-25-06

 

Our thanks to everyone who has been involved in the cookbook and fundraiser efforts, they are both making great strides.

 

Today is 40 weeks (9 months) since JJ was diagnosed with a brain tumor.  We look very forward to his celebrating 40 years since that news was delivered.  As I sit here and write this, it is easier to believe that it will come to pass - JJ's energy, running speed and balance are all incredible.

 

Diana had a doctor's visit yesterday; she and the baby are fine.  We are very blessed to have been led to this doctor, as he is also a man of faith - and we are finding that to be more important in our dealings with medical types.

 

We continue to follow and pray for the other kids in our extended family circle and ask that you continue to do the same.

 

Hebrews 4:14  Since we have a great high priest who has gone through the heavens, Jesus the Son of God, let us hold firmly to the faith we profess.

 

30 July 2006

 

Into August

 

It's HOT here in Dixie.  Period.  I never thought I'd say this but bring on some of the white stuff.  I'm starting to get tired of seeing the thermometer going over 100.  It was overcast (small amount of rain) yesterday and in the low 80s.  Thought I was going to freeze.  Back up into the upper 90s to lower 100s today.  Gee, and we still have to get through August! Okay, I got the weather off my chest, on to JJ.

 

JJ is doing well.  Energy level continues to be at a very high level.  He's taken to riding his bike much more now than ever before.  Running and wanting to "have races" against me.  I've actually had to increase my gait to keep up with him.  Somehow, he always beats me by a half step.  Balance is good.  He actually was showing us how well his balance was by standing with one foot lifted for over 5 seconds.  He alternated legs and did it again with the other.  I know, to some of you, you may so what?  Believe me, as many of the other parents know and can attest, if the child can maintain his balance,  it is a plus.  Speech is okay.  Sometimes soft and a little difficult to understand and other times, absolutely clear.  His left eye still has some turn to it but doesn't seem to have regressed any further since the last post and at times looks absolutely normal.  Good lateral movement.

 

Chemo ended last week.  JJ commented on his belly hurting only once but managed to keep all the capsules down.  We will once again be traveling to NIH in early September for another look by the fine folks there.  Between now and then, JJ will only have to do his monthly check up in Birmingham and, of course, go through his 5 day cycle.  Besides that, just the routine (I really dislike that word) intake of calphos, ruta and protocel plus his Friday, Saturday and Sunday Bactrim.

 

 I ask................ please keep all these children in your continued prayers.  I've been through a couple of conflicts in the service and seen some, what many would say were, less than desirable images and I'm here to tell you, this thing these children are battling is by far, the ugliest thing I have ever witnessed.  All of these children deserve our respect and admiration on how they handle this.  I have talked to other adults who have fought cancer and they tell me how when they were in the hospital they  would "hit the morphine button time and time again..." and made it sound like it was a tough battle.  Probably was a tough battle and don't mean to detract from their fight but when you look at how these  children handle this, there is no comparison.  My role model is currently 43 inches tall, weighs in at 41 pounds and will turn six years old in 2 1/2 weeks.  Give each and everyone of them your time and prayers with additional intentions to Matthew, Cooper and Katya.  Please go to their sites and drop them a letter of encouragement.

 

Joshua 1:9  "...Be strong and courageous.  Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."

 

 

1 August 2006

 

Updates

 

There are a couple of things to mention about the event at the Train Station on the 12th.  Yes, Car Clubs are more than welcome on the Poker Ride.  First vehicles will go out at 9am, last out at 3pm - so this will be an all day opportunity, come join us even if you have another ride in the morning.  There was a miscommunication with the Postal Service - anyone who has had something returned, please re-send, that issue has been resolved.  Band fees have been waived for the event.

 

 JJ's appetite seems to be returning somewhat from chemo week - he has been on a bit of an "apple strudel" kick for the past couple of days.  This is not real strudel - it's apple crisp - but he's eating it.  It seems this recent interest comes from he and daddy playing Shrek 2 on Playstation - it gets mentioned a lot.

 

Final preparations are underway for his (early) birthday party tonight.  After the boy's weekend (28 May post) he thought it might be an ok idea to have his party at the waterpark; we expect to have tons of fun. 

 

This will be his last up-late night as school starts on Friday, and we all need to settle back into the school day routine. It should be another good year for him - one of his neighborhood friends will be in his class, as well as two more boys from pre-school.  I like that we've been here long enough that he has friends that he's known for almost 2 years.

 

Please check on Matthew, and keep he and his family in your prayers; there is a special need for them right now.

 

Psalm 28:7  The Lord is my strength and my shield; my heart trusts in Him and I am helped. My heart leaps for joy and I will give thanks to Him in song.

 

 

5 August 2006

 

Busy week

 

I would like to start by asking that all please remember Matthew and his family in your prayers.  Please go to the "other kids" page and drop them an e-mail of encouragement.

 

As for us, it has been a busy week.  JJ celebrated his 6th birthday on the 1st of August (a couple of weeks early {18 August}).  Main reason is that school started this past Friday and we wanted all who attended to have the good time prior to getting back to the early to bed/early to rise routine.  It was celebrated at the Point Mallard Water Park.  Swimming and sliding was the order after the cake and I believe a good time was had by all.  I know after the summer, JJ really liked seeing all his friends again.  As I said, school started yesterday.  JJ is very excited about being in the 1st grade and just loves learning.  He is in Mrs. M. Johnson's class and is seated with several other children that he has either attended kindergarten, preschool or neighborhood friends.  We look forward to good reports and a smile on his face at the end of everyday.

 

As to JJs medical side.  Both Diana and I have noticed a little more turn of the left eye than previous but again, not all the time.  Same with his speech.  Soft and unclear at times but very clear at others.  We've a little over a month before our trip to NIH.  If these symptoms become more persistent, we'll talk to Children's about another MRI.  If not, the MRI in Bethesda will get us up to date.  JJ also had a little problem the other day that was unrelated to his condition.  JJ woke up Thursday with some swelling of his right heel.  A prompt visit to the doctor that afternoon merited a referral to Sports medicine for x-rays (negative) and a, yep, MRI of the foot.  Results shows no concerns to the deep tissue or bone.  Doctors aren't sure what the cause is but are treating him with extra caution due to being on Temodar.  We're guessing a bug bite or a staff infection.  Either way, he was prescribed "Bactrim" for a period of 10 days.  He is up and walking around but is using just his toes and not the whole foot.  We were thinking of keeping him home from school on Friday (first day) but he would have none of it.  My champ.

 

I also added two more names to the "other kids" page.  Please add Grant and Yasmine to your prayers.  I cannot wait for the days when we will no longer have to this.  Too many children............

 

Galatians 6:2 Carry one another's burdens; in this way you will fulfill the law of Christ.

 

11 August 2006

 

We're off 

 

Just a quick note that we're heading down to Montgomery for the weekend.  JJ has no change since the last post and remains full of energy.  Next appointment is his monthly checkup on the 16th.  We'll see what Doctor Reddy says at that time on weather we go forward with an unscheduled MRI or wait until September.

 

If you noted, an additional six names have been added to the "other kids" page.  Not all have the same condition as JJ but all do deserve the same attention.  Thanks Jeff for forwarding them to us.  I would rather not have to add anymore names but until we beat this thing, I think it best that we come together as a community.  Before JJ was diagnosed, I had never heard of this "thing".  The more we bring together, the more people can come to understand that these are children that are loved and not simply numbers.  Let's share our individual research and experiences as well as getting the word out.  It's time to stop this thing.  Please visit their sites.  Also, please continue in the special prayers for Matthew.

 

Hebrews 10:24  And let us be concerned about one another in order to promote love and good works.

 

 

13 August 2006

 

Trains

 

We have returned from the Battle of the Bands event in Montgomery put together by JJ's Aunt Cheryl and lots of wonderful people.  Thank you all again for your blood, sweat and tears!  It was held at the Train Shed.  The, very much in use, tracks are just on the other side of the chain link fence - so it was pretty close to heaven for our almost 6 year old little boy.  His sister, of course, followed right on his heels as he ran to the fence each time to wave and count.  We were instructed to not do anything other than enjoy - we didn't need to do anything else - everything had been thought through.  There were bikers at the gate before it even opened and some really pretty cars on display.  We had thought about taking JJ's Corvette down with us, but were glad we didn't as we had some pretty torrential downpours on the way south.  The variety of music was across the spectrum - it seems that pretty much every type was played or sung.  There were vendors on site, one of whom seemed to adopt JJ & Nikki.  We were short one vendor, please join us in giving thanks that her entire family was able to walk away from the accident they were in on the way down.  JJ had a special guest for his birthday celebration; one of the local television personalities dropped on by to sing for him.  Bands were still playing  long after JJ was asleep - he didn't even have the energy for an evening swim (he had already been at 6 o'clock that morning, so it wasn't like he was denied the chance).  It is always a joy to watch your children with their extended family - this weekend was no different, it was one of the best parts of this trip for us.