Day+ 59 No more Magnesium IV

2/3/2014

Monday's doctor appointment went well. KJ's blood & platelets levels are continuing to improve.  Although he now has to take approx. 24 pills a day, he will no longer need his daily magnesium IV infusions.  He also starts his home school instruction this week. Feeling blessed.

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

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."