Emotional Rollercoaster..

We began this Bone Marrow Transplant (BMT) journey November 25, 2013 and if you read some of my  previous post, well you know this has been an emotional roller coaster. We have celebrated Thanksgiving, My 41st birthday, Christmas and now New Years in the hospital.  When my family began this life-saving journey we knew it would be a long journey, but nothing really can prepare you  to watch your child endure chemo, transplant, wiped out immune system, loss of appetite, nausea and vomiting; as well as change in physical appearance, change in skin color and loss of hair all in just a few short weeks.  Don't get me wrong, since his BMT he has made incredible strides that continue to amaze the doctors!  For this reason, 2013 was a  GREAT year and 2014 has so much more in store for KJ, but he still remains hospitalized as he recovers.

So far, we have had three different hospital discharged dates, but KJ continues to have a few set backs. His white blood counts are up from zero to the thousands, hemoglobin levels are up, and his absolute neutrophil count (ANC) levels are on the rise. The problem KJ is having is producing and holding onto his blood palettes. Therefore, he's receiving daily sometimes twice a day blood palette transfusions. After experiencing a couple of allergic reactions, he gets steroids and Benadryl before each transfusion.  For sickle cell BMT patients the parameters for blood palettes are higher, keeping levels above 50,000. For most other BMT patients parameters are much lower, levels as low as 20,000 is sufficient (normal palettes range is 150,000 - 400,000 per microliter (mcl)).  The reasoning is blood palettes, which primary function is to clot, otherwise you run the risk of excessive bleeding, is critical in KJ's case because previous MRI's revealed silent stroke activity in his brain.

Regulating his blood pressure has also become an issue, although their are many underline factors that contributes to his high blood pressure, one being his daily doses of Tacrolimus (Tacro), a critical medicine for transplant patients. Tacro is used to prevent graft vs. host disease (GVHD) by decreasing the activities of your immune system thus allowing new donor stem cells to regenerate. In turn, increasing his risk for infections.

In short, for KJ to come home his body most be able to produce enough blood palettes to maintain a level of 50,000 for at least two days as well as maintain a blood pressure below 120. Otherwise these two factors, will put him at greater risk for having a stroke.  Amazingly enough, doctors say KJ is well ahead in his recovery! Sounds crazy, but it is true.

Merry Christmas from the McKenzie Boys!!

HAPPY NEW YEAR!!