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!!

"Worry is a misuse...

I must apply this to my life more often....

Taking pills

KJ has been working on taking his medicines in pill form. He also gives himself his own eye drops daily. The doctors and nurses are just amazed:)!

Almost had a heart attack..

Mr. Independent KJ takes off for the playroom without me and falls bringing the entire double IV poll down on him. After a few tears, a 15 minute blood palette transfusion and a few extra lumps on his bald head KJ is fine. The nurse says to him "is their anything else you need?" KJ replies "yes, can you get my mommy a glass of wine." SMH .. He knows he almost gave me a heart attack!

Thank you to St. Jude

On Saturday, November 23rd I walked with St. Jude & friends in honor of KJ.  Thanks to the research and treatments in childhood cancers, blood disorders and sickle cell disease my son along with many others have a chance to live a better quality of life.  People in 75 cities nationwide walked for the St. Jude Give Thanks Walk campaign.  Hearing the stories of other families going through similar situations, some had stories of triumph and others shared stories of pain of losing their loved ones.  Needless to say it was a very emotional day as KJ is going into the hospital the following day to begin his bone marrow transplant...

Myself and Joelle Allen

Transplant Day - Part 2 It's Time! The Stem Cells are here!!

Day Zero

Its a Celebration!! 

A new Birthday for KJ 12/5/2013!!  

It will be 3 to 4 hours before bone marrow stem cells are processed and delivered.  Meanwhile many of our family members are here playing, eating, telling stories and laughing!! I am happy everyone is here, but I'm also exhausted and emotionally drained. I look for a quiet place to sit, reflect and take it all in.  No luck.  All I want to do is curl up into my hubby's chest and wait for the 'liquid gold' to be delivered.

OMG! Its time! The stem cells have arrived!! I scream, I cry, I dance and I jump around!! 

Transplant day is usually referred to as 'Day Zero'.  What is Transplant?

Honestly, the process itself is pretty boring. Transplant is not a surgery, instead bone marrow is collected, processed and stored in a blood bag, similar to blood bag for transfusions. Then healthy new blood cells are infused into your body through intravenous (IV) line or in this case through the broviac line. The transplant team watches closely as they explain what to expect and how long it will take.  

Liquid Gold!!
Beautiful Bone Marrow Stem Cells!!

KJ falls asleep during transplant!

Two Thumbs up!
Transplant was a success!!

Surgery to place Broviac Line....

KJ is getting his Broviac line placed in his chest today, December 15, 2013.   The line will be used for chemotherapy, IV medications, IV nutrition and obtaining blood samples.   

What is a broviac line?

University of Michigan Pediatric Surgery defines BROVIAC catheters as similar to a PICC line. It allows a soft special type of rubber (silicone) IV catheter to be placed in your child without the need for repeated peripheral IV sticks. A BROVIAC catheter, however, is placed directly into a central vein, usually in the neck, upper chest or groin.  The catheter proceeds to a position just above the heart. In general, a BROVIAC® catheter is tunneled under the skin and brought out on the chest or thigh away from the site where it enters the vein. Theoretically, this prevents bacteria from gaining access to the central portion of the catheter. Finally, BROVIAC® catheters contain a "cuff" which is buried under the skin. Your child's tissues will grow into this "cuff" and allow the catheter to become more stable, which will reduce the chance of it becoming pulled out. 

Broviac catheter placement above the heart

KJ in recovery