The next step of the journey….

Posted by David's Mom on November 5, 2008

So… we start chemotheraphy…..every week we go in and David gets Chemo through his Port or through his back (lumbar puncture) sometimes both.  We deal with the nausea….rashes…lack of appetite….the hair loss…and everthing else that goes with having to do chemo.  December…..January…..February….we started radiation to go along with chemo……finished radiation…..March……April…..May…….June…..everthing status quo….Davey tolerating everthing ok……

Then July ….David starts running a high fever of an unknown origin.  We are admitted to the hospital and put in isolation.  They run tests…and they find NO reason for the fever…..They tell me that this NORMAL due to the fact that David is neutropenic (he had zero neutrophil white cell ), but that they would continue to run tests….and add all sorts of antibiotics (seven total)…..and David shakes with the fever and hurts from having the fever for so long and I feel helpless because I cannot fix it and make him feel better.  For 18 days David runs this fever of unknown origin.  To this day no one can tell me what caused the fever BUT David got better on his own……and we got to go HOME YEAH!

 davey in July

August….David starts maintenance chemotheraphy which mean he can start to be more normal….and he start his first day in high school at Hamilton High School as a freshman.  He starts out slow half days…he gets tired easily but he is going…and I am very proud of him.

September 14…..David starts running a another fever and we go to the emergency room but they say he is fine so the amp him up with antibiotics take some blood work and send us home. UNTIL 11:45pm that same evening.  I get a panicked call from the emergency room…David should have never left the hospital….he had contracted a Gram-negative bacteria and had to be on constant antibiotic…but the doctors told us that we would only be at the hospital one week.

Day 6 of the one week…..our doctor comes to me looking very grave….David blood test showed cancer cells….he has relapsed.   It is my worst nightmare….I was devestated….we did everything that we were told and still this cancer came back.  The doctor were only giving him 10% or less chance of survival and that he would need a bone maroow transplant when we got David cancer into remission.  With a flurry of activity we give him a Broviac Port for acess…we do a bone marrow aspirate (removing bone marrow for testing) and they rell me we will have to start chemo again.  I was so disappointed for David and I was heart broken.  They decide to put him on a high dose chemo….the drug he had had before but the dose would be 80 times what he had before.  We do this chemo for 2 week and then we wait….and wait some more.  About day 21 ….David has no cancer cell….YEAH……….but that only last for six day and then the cancer cells are back.

Damn….so we try another chemo drug called Nerlarabine….he got this drug over a 5 day period….and had a panic attack when I found out that it costs $58,000.  But who cares…I think what are they going to do reposses David???? I just want him to be well so lets do it.  And then we wait…..and then the cancer never goes away…it goes down for awhile…but never goes away.  So I am at near panic purportions…we have been at the hospital for six weeks and we still do not have his cancer under control and if we can’t do that he cannot have the bone marrow transplant that will ultimately save his life.

So on Halloween, David’s doctor suggest we try a really different approach….one that has helped some to the kids in David level of cancer.  It is called “sticky prodical” and as we speak David is getting it by IV.   And is it showing some results…so I remain hopeful……hope that this is the right combination of chemo drug….that they can find a Bone marrow donor since no one in our family matches David…..HOPE is all I have right now….and what is keeping me from falling apart……Keep us in your prayers….we NEED everyone we can get. Love to you all

 

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