It Has To Be A Better Way...

1st Day of Blood Transfusion

Transcranial Doppler (TCD) ultrasound screening can identify children with sickle cell anemia who are at elevated risk of stroke and may benefit from chronic transfusions.  When doctors notified us KJ's test were abnormal, they aggressively started him on a weekly blood transfusion regiment. At the time, we had know idea he would have to have chronic transfusions for the rest of his life.

KJ hates being poked! It broke my heart to think about how I would tell him in addition to all the regular pokes from ER and clinic visits, he will be getting poked a lot more often.  Dealing with the diagnosis the best I could, I informed KJ he would be receiving his 'superhero' powers.  I found the perfect superman shirt with a cape attached from Target.  He loved it!

The 1st few weeks of blood transfusions back to back prove to be extremely emotionally draining for me and my husband.  More importantly, it was painful and traumatic ordeal for KJ.  It got to the point, we needed three people to restrain him in order to start his IV.  Often times, my husband would leave work to come help me hold KJ down for his poke.  As I watch my son scream, cry and fight with a lump in my throat I thought to myself "it has to be a better way."

I am failing him...

Keith (daddy) & KJ are both emotional after getting poked 

KJ was diagnosed with Sickle Cell Disease (SCD) at birth. Needles to say Keith and I were devastated by the diagnosis. For the first five years of his life, KJ was on a daily liquid penicillin regime, a course of action that proved to be productive as he didn’t exhibit any physical signs of the disease. 

KJ’s sickle cell began to manifest a few months before his 5th birthday, doctor’s informed us that he was at risk of suffering strokes due to the lack of blood flow in his brain. Routine ultra sounds of the head, called transcranial doppler screening (TCD) was used to check the speed of the blood flow within the brain. To prevent him from suffering unimaginable pain, KJ began a series of blood transfusions. 

The reason for blood transfusions it lowers the amount of hemoglobin S red blood cells in the body.  Fewer sickled or crescent shaped hemoglobin S red blood cells in the bloodstream, less likely of cells becoming blocked or sticky. Although blood transfusions has proved to be beneficial for him, it would be required for the rest of his life. But there are also many risk factors with long term blood transfusions, such as iron overload. 

At only 5-years old, how was he going to endure getting poked in his tiny veins for life?  It was becoming harder and harder to watch him suffer, scream, kick, and fight to avoid getting poked. One day, while he sat on my lap and two nurses held him tight to start his IV, he swung his head back as hard as he could and 'head butted' me in the mouth! The pain spread across my face and tears came to my eyes. No, I didn't get angry, I asked him why would he hurt me like that? His response was "you let them do this to me!"  Those words along with his tears broke my heart.

I am failing him. I am his mother. We are his parents. We can't continue to let him suffer.  We have to protect him.  We have to ensure he's getting the best care available. And this where our journey to cure KJ began.

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