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Health & Fitness

I Went to a Birthday Party…

Pediatric cancer and need for a cure...

 

I went to a birthday party for the most courageous 9-year-old boy I have ever met.  The party was in a church hall and attended by at least 200 of his family and friends.  The color theme of the party was red and everywhere I looked there were red balloons and almost everyone in attendance was dressed in red.  There was a DJ and the music filled the hall with joy. 

The Birthday Boy had a smile on his face as he greeted every one of his guests.  He spoke of an up-coming Caribbean cruise he is taking as his “special” birthday gift. I only stayed for a very short period of time as memories of similar events became all too real for me to deal with

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I went to a Birthday Party for ; now confined to a wheel chair, only able to see out of one eye and battling the horrors of brain cancer.  Pediatric cancer is just so awful, yet somehow the children suffering from it seem blessed with super human strength and dignity.  Brandon you are an amazing young man.  Thank you for inviting me to your birthday party, enjoy your cruise and keep smiling.  I went to a Birthday Party and left crying.

This time of year is difficult for families with children in hospitals and 2 years ago is was not much different for us…

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TUESDAY, NOVEMBER 3, 2009 5:19 PM, EST

We finally have received Brady’s diagnosis.  Brady has leukemia this we already knew.  However, what we now know is Brady has neither Acute Lymphoblastic Leukemia (ALL) nor Acute Myelogenous Leukemia (AML) he has own unique Leukemia which is supposedly a combination of several of the sub-types of both ALL and AML.  The doctors are following the protocol for AML and will continue to do so depending upon the results of Brady most recent cycle of chemotherapy.  We will know the results in the next 3 to 5 weeks.  Until then, it’s a wait and see scenario. 

A few, “I never knew” facts about leukemia:  Children’s Hospital of Philadelphia (CHOP) is one of the leading pediatric cancer hospitals in the world.  They have performed 10 bone marrow transplants for children with AML between the ages of 1 month – 10 years old in the past 5 years.  Seattle Cancer Care Alliance in Seattle, Washington arguably the pioneer in stem cell transplantation has performed 4 transplants for the same age group between January 2002 and December 2006.  Needless to say, Brady’s unique leukemia will most likely require a bone marrow transplant and the minuscule numbers are scaring the hell out of us.

So many people have asked us what they can do to help, so Sherrie and I have come up with a plan to help ease our anxiety and hopefully put a positive spin on a horrible situation.  We are asking all of Brady’s family members, friends, and anyone who has been touched by our son to hug someone in honor of Brady.  That’s right we want to start:   -  “Hugs for Brady” 

Start today; in fact start right now!  Give someone you love, someone you hate anyone who needs a hug a – Hugs for Brady and let us know how many hugs you’ve given in his honor.  All we want to see are the numbers – it will really mean a lot to us and most importantly; Brady!

Until next time, please keep Brady in your thoughts, prayers and hugs…

SUNDAY, NOVEMBER 22, 2009 2:28 AM, EST

My watch and I can’t sleep the “window rack” is killing my back. The accommodations at The Robert Wood Johnson University Hospital Bristol-Myer Squibb Children’s Hospital are not designed for a 6’2” 216lbs. guy.  Or perhaps they really are designed with a purpose other than pain; maybe they’re designed to keep you awake to watch over your child and write weird stuff in your blog at 2:00am.  I don’t know but if you ever have the miss fortune to come to this facility plan to leave with little sleep and a very sore back. 

Anyway, let me bring you up to date on the blasts saga, to do so let’s review exactly what the heck a blast is.

“Acute myeloid leukemia (AML) is a cancer of blood-forming cells in the bone marrow. Abnormal immature white blood cells (blasts) fill the bone marrow and spill into the bloodstream. Production of normal blood cells is affected, causing anemia, bleeding problems and infections. Treatment is mainly with chemotherapy. The outlook varies and depends on factors such as the exact sub-type of the AML and your age.”  Patient UK

I think this definition I found on line is simple and well written.  Anyway, blasts and the percentage they represent in some magical test matrix determine whether your cancer is or is not in remission.  Hence, I no longer follow the box scores of my 4 favorite sport teams, I follow the daily CBC.  The Complete Blood Count test performed everyday on Brady to see what his blood looks like.  And for the past 2 days the results have rivaled any Yankee Red Sox game I’ve ever watched.

Thursday the blasts are at 4% and everyone is excited because anything less the 5% is considered remission.  Friday morning tests come in at 12% and literally panic sets into Dr. Drachtman’s team and sends Sherrie and I into our rationalization anecdotal dialogs of “it’s to be expected” and “it really doesn’t mean much.”  All the while we are scared beyond any none profane description.

Dr. Drachtman has another CBC performed and personally requests the Director of Pathology (Dr. Cadoff) to review the test results of both Thursday and Friday.  Dr. Cadoff comes back with totally different results 3% for both days.  Saturday’s results come in at 2% and life is good in Brady’s ballpark.

However, Dr. Drachtman wants to have a bone marrow biopsy performed first thing (7:30am) Monday morning a week earlier than originally scheduled and he will personally perform it.  Monday’s test results will confirm the all the crap coming out of pathology and hopefully have Brady on his way home by Tuesday.  I would much rather be reviewing the stats from the UCONN game than waiting for these results.  If UCONN can beat Notre Dame then Brady can without a doubt knock his blasts out of the park!!

While all of this insanity is going on our son is about as happy, active and demanding as any 15 month old toddler can be.  Yes, Brady is now 15 months old; he came in here a 13 month old baby and is hopefully going to be leaving this Tuesday as a 15 month old toddler with his cancer in full remission.

So, that’s it for now (I've got to get some sleep) as always; please continue to keep our son in your prayers, thoughts and hugs…

MONDAY, NOVEMBER 23, 2009 8:46 PM, EST

Monday night and there is still some hope that we will be home for Thanksgiving.  It all depends upon Brady and his temperature.  I just left the hospital and he had just woken up from a nap and his temperature was normal.  It’s been this way all day and if it continues through tomorrow we could be on our way home Wednesday.  His temperature must also be complimented with negative (viruses) results from the various blood tests taken earlier today.  So, it may be a long shot but who knows it could happen.

Either way; we will be back at it on Tuesday December 1st for the second round of chemotherapy.  That day will begin with the bone marrow biopsy we missed today, the insertion of a Broviac catheter into Brady chest replacing the PICC line in his arm and most likely intrathecal chemo which administered directly to the spinal cord.  December 1st will be a fun day to say the least!

It continues to just astonish me just how this disease acts; if you were to see Brady today (after his vomiting) you would really wonder; why is this child in the hospital?  But if you were with him when his temperature shot up to 103˚ followed by 2 rounds of serious vomiting you would be scared to death.  It is really a very frustrating situation and one that can rip at your heart.

Sherrie has the watch tonight and I hope she gets some sleep.  I too am going to call it an early night and try to catch a few extra winks.  So, until next time; keep Brady in your thoughts, prayers and hugs – we really would like a few days away from the hospital!

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