Day +53 Follow-up with Kidney Doctor Today

Monday, January 27, 2014

Today KJ has to see his bone bone marrow doctor and the kidney doctor. Praying for good news and continued healing!

 Test Results..

Day+53 ...Please to say KJ's doctor visits went well - no blood or platelet transfusions today. As I mentioned before, the first 100 days are the most critical in his recovery and we are almost half way there. Feeling blessed and grateful!!

Platelets over 100..

Today's doctor appointment went well. KJ's blood platelets were over 100.  He hasn't needed any blood platelet transfusions in 2 weeks. In the past, he was getting transfusion twice a day. This is great news, because it means his body is making its own blood platelets. We get the rest of the week off from the hospital!

Transplant Day- Part 1!

Thursday, December 5, 2013

It's been a long week at the hospital watching KJ undergo chemo for the past 9-days.  Needless to say I'm physically and emotionally drained once again. Here we are the morning of transplant day! We decided its best I go home tonight since my family had arrived from Cleveland. By the time I arrived  home from the hospital everyone was asleep. I packed and prepared for tomorrow's big day.  I did not sleep well at all with so many thoughts running through my mind. I know we are doing the right thing, but yet I can't help but worry.  Why do I feel like I am sacrificing one child to save another?  Geez, it has finally hit me.  I am about to have both my babies in the hospital at the same time! Oh Lord, what is wrong with me? Maybe I didn't think this all the way through.

Thank God my mom is here! She decides its best she rides with me and Karson to the hospital. Heck, I am so focused on getting to the hospital and all the unknowns that I never had time to ask for help. I just want to arrive safely and on time with my precious cargo. Needles to say I was happy to have my mommy with me.  I take a deep and breath and pray "Thank you God for answering my silent cry for help."

Before Karson's procedure doctors cautioned us of the potential risks of not being able to collect enough stem cells and/or the risks of collecting too many stem cells. The procedure should be no longer then 2 to 3 hours. However, they will have precautions in place to monitor and measure the collection during surgery.  After the collection or 'harvest' of stem cells, cells will be sent to labs for testing and processing.

Karson is happy to hang with mommy this morning, but is worried that we left his twin brother Kalen at home. Karson has never had any type of anesthesia or surgeries so he's getting a little suspicious and asking questions.  Oh gosh how will explain this to Karson? Does he understand what is about to happen?  Will he freak out when he gets poked? Will he be in pain? What if its not enough bone marrow stems to collect? What if they take too much bone marrow? Will he be sacred?  This so emotionally draining....

Karson enjoying the playroom while nurses check his vitals.

Recovery

Karson is not worried at all heading into surgery

Karson is recovering and doing well.  All my fears and worries from this morning have been erased, doctors say "Karson was a stem cell gold mine!" Doctors were able to collect more then enough stem cells, so much they have enough left over to store for the next 10-years to be used only for KJ.

Arrive to KJ's room to join the family 

Karson is a little cranky

My Routine..

It's been about a week since KJ has been home from the hospital. So far we have had 3 doctors visits and 1 blood platelet transfusion. Although his platelet levels were at 54 on Friday, doctors thought it best to go ahead an give him a transfusion to ensure he would make it through the weekend without levels dropping lower.  However, Monday January 13th's appointment his platelet levels were at 81! This is great news, meaning his body his creating blood platelets on its own!  As I stated before in a pervious blog a normal blood platelet count is 150,000 - 400,000 platelets per microliter (mcL).

On Monday's appointment, I also learned KJ's red blood cells or bone marrow cells are all Karson's cells now, simply meaning KJ's body is producing the donated cells!  However, KJ's immune system is slower to produce the new donated cells, in part because he's taking a drug called Tracolimus (Tacro), which in simple terms is used to suppresses the immune system to prevent rejection of new donor cells.

According to doctors, we will be learning a lot about 1. Bone Marrow Cells marker CD33 and 2. Immune Systems marker CD3.  I was also introduced to a new term 'Chimerism.'  Chimerism, is the testing used to determine engraftment after a bone marrow transplant and to diagnosis rejection.  It will test the amount of recipient cells vs. that amount of donor cells.

Our next appointment is tomorrow, Thursday.  Soon my aunt Sharon, whose been my lifesaver throughout the whole BMT processes will be leaving which makes me sad.  So thank God, my routine is getting a little easier each day, but it is sill a lot of work.

1st follow-up doctor's visit. KJ is in good spirits! 

2nd doctor vist KJ gets a platelet transfusion 

3rd doctor's visit KJ is being KJ..SMH

Daily routine getting easier

Its No Place Like Home

Woohoo! Monday, January 6th in the midst of a 2014 Arctic Vortex we get the 'ok' for KJ to go home!  KJ's blood platelet levels were at 88 this morning well over 50, the parameters doctors had set for his condition. The parameters are set higher for KJ because of the presence of silent stroke activity in his brain. Once again, I am having mixed emotions of happy and scared.  Of course happy because my baby is progressing but also scared of not having the safety net of the nursing staff.  Feeling overwhelmed about being responsible for KJ taking over 17 pills a day, administering his IV for an hour each day,  flushing his broviac lines daily, changing his dressings every few days, checking his blood pressure twice a day and the upcoming doctor visits 3-days a week.  Whew! On top of all the other responsibilities of being a stay-at-home mommy with 3-year old twins and a hot husband:).

My mother-n-law was nice of enough to stay with KJ over the weekend giving mom and dad a much needed break!  Despite the Arctic Vortex and ignoring warnings to stay off the roads we made it to the hospital in record time.  The discharge process was long and agonizing, as the nursing staff wanted to be very thorough. 

Wheewe!! We sure accumulated a lot of crap over the past 6 weeks! It took us over 2 hours to pack up the room and load up the car.  Needless to say we made it home with our precious cargo sometime after 10:00pm, driving under 20 mph with icy road conditions and below freezing temperatures.  I guess thinking back on it, maybe we should have stayed at the hospital one more night. But, its no place like home!

Bringing home the big wheel!

Daddy leaving hospital with our precious cargo!

Overwhelmed

Happy to have my baby home!! But I sure miss the nursing staff from the hospital.. With KJ taking 11 pills in the morning, 6 pills at night, blood pressure checks twice a day, and trying to figure out how to run his IV machine for an hour has nurse daddy and nurse mommy feeling a little overwhelmed!!!

My hubby and KJ fraustrated because IV machine (GemStar) is not working..UGGH

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!!