WOW! Robin Roberts retweeted KJ's100 Day Milestone!

March 27, 2014


WOW!! Finally, we have the attention of Good Morning America's Robin Roberts! She retweeted KJ's 100 day recovery picture!!
Here's her post:

Robin Roberts @RobinRoberts
Yay!! XO "@Love1Miko: @RobinRoberts 6yr old KJ is day 100 in his bone marrow transplant recovery to cure sickle cell pic.twitter.com/pr4GiJ5wbG”

Twitter / Love1Miko: @RobinRoberts 6yr old KJ is ...
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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.

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!