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Because this just MAY reach someone that can help locate a missing child and it certainly can't hurt, I have added an AMBER alert bar to this page...CHECK IT OUT!!
Welcome to Jake's web page!! Jake is the youngest of three children and is 10 1/2 years old .This page was designed to keep friends and family informed of his progress following VERY lengthy treatment( 5+ YRS )for JMML-JUVENILE MYLEOMONOCYTIC LEUKEMIA(and currently CHRONIC GRAFT VS. HOST DISEASE ). He has endured BOTH a bone marrow transplant, that took place on April 9,1999 at Texas Children's Hospital in Houston ,Texas AND a Stem Cell transplant(essentially the same procedure as BMT ) that took place on Sept. 25, 2000 at Texas Children's Hospital , as well. The second transplant was needed because of incomplete remission or "relapse" immediately following the first horrific transplant(as per day +101 bone marrow aspiration results).
JMML (formerly known as JCML) is an extremely rare form of a HORRIBLE disease called Leukemia, IT IS A BLOOD CANCER. It is poorly understood,therefore, hard to treat and the prognosis is grim. Jacob has lost several online friends ( angel links below) to JMML's terror...all are under 6 yrs. old .
While WE are hopeful for a future that's MUCH more bright than the past , we must NEVER forget the lessons we've learned .We must never forget the people who have supported us and shaped our future.... for if we do, their journeys/efforts would be in vain. The children below are FAR braver and wiser than anyone would imagine. We can learn ALOT from them...So, stay awhile , click a link below and say a prayer for these and unfortunately, those like them ,that will endure the inevitable in seek of a brighter tomorrow. Please scroll to and read the very first entry of "past journal entries" section below to find out how Jake was diagnosed with JMML at only 4 months old! THANKS FOR VISITING!!!
Here are links to other JMML DIAGNOSED KIDS:
BRIAN (REMISSION!!)
SHANNA
**DUSTIN
DANIEL( ONGOING GRAFT VS.HOST ISSUES)
JORDAN G.( IN MEMORY OF)
TONY
OUR BUDDY ETHAN(IN PRECIOUS MEMORY)
Journal
Saturday, May 2, 2009 8:35 PM CDT Ok so , I already know I don't update enough but I'm trying to get written the important stuff. After 10 years in this battle , we have little to talk about (thank goodness) . Jacob has a few issues that are being examined for evaluation.....here goes...I posted a new picture of JAKE,taken (April 2009),last month.It was taken in the field next door!
Jake is doing really well . He is making good grades in school ( regular instruction ) . He made a 100 on the TAKS test. I am very proud .
He got the BOSTON SCLERA LENS in January . I cannot say enough about how much they have helped Jake deal with the severe dry eye issues. I highly recommend them if you have experienced limited relief from other therapies. As you can see from the picture he has open eyes now and doesn't sqiuint all the time.What has been an ongoing battle for the past 7 years or so is now becoming much more feasible to deal with.
*** Jake's Lung issues are unknown, we went for several phases of testing and all they can say is that there is something not right with his lung function but can't determine any treatments or therapies to help. My understanding is that we wait and see if he has adverse problems ( like shortness of breath etc. )For now , he seems fine but then again he isn't your most active kid ( isn't interested in sports, just video games !!). We will be evaluated yearly for that unless otherwise instructed.
*** Jacob started on a low dose of thyroid replacement after a year of watching with no change ,The therapy consist of a small pill taken once per day with seemingly no adverse side effects. He has to be retested later this month to see if the dose is correct for his condition.
*** His kidney function remains not quite normal but stable and ok .
*** I finally am finished with my degree in early childhood Education and graduate May 15 th . After a detour in the Nursing program,and lots of time off due to medical and personal circumstances , I persisted long enough to "get it done " !!!
*** Jacob will be going 4th grade soon and I couldn't be more thrilled with how much he has overcome in his short life .
This Wednesday evening , Jake and I will participate in a Kids walk in honor of a girl that we met years ago . She played softball on my daughter's softball team . Her dad and my husband helped coach all these 9 and 10 yr.old girls .A few years later she subsquently was diagnosed with cancer and died in Dec 2007 ( age 15)...but not before inspiring many to believe and achieve nearly impossible goals. Chelsey Campbell , here's to you ....
P.S. I 'll try to update more pictures soon.
Blessings to all,
Danette
Read Journal History
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