Still Tracking

Mireya's counts took a small dip, but are still in the process of stabilizing.  Over the last several months, Reya's white count has fluctuated anywhere between 1.5-4.6.  Having her on the board at 1.5 at this point is promising.  Her neutrophil count remains above 1000 which is awesome.  Neutrophils are the cells that fight infection.  Reya's neutrophil count has not been above 800 since about January, so we are very excited about where she is right now.  We're still on track to possibly be released early next week.  We'll have a better idea after receiving her labs results tonight.  It seems to be happening so quick, but we believe her body's familiarity with Jalen Wonder Boy Bolton's cells is definitely a factor.  Jalen and Makinley miss Reya being home and they definitely miss Mommy and Daddy when either of us is away at the hospital for extended days.  We banked on approximately 6 weeks of Splitsville, but are really looking forward to being back together at home as a family unit. The same parameters and precautions would apply at home, so to manage Reya's care there would really be nice.  Once we're discharged, whenever that is, we'll still be in clinic 3-4 times a week for monitoring and follow-up. 

Reya had a nosebleed today.  It wasn't excessive, but with low platelets you worry about bleeding and the body's inability to clot successfully.  Her hemoglobin was also low, as a result she received blood and platelet transfusions.  She's had a few out of the ordinary symptoms with the last two platelet transfusions, so the Medical Team decided to pre-medicate her to help diminish any issues. Overall Mireya continues to do well.  Her appetite is still hit or miss, unless it's bacon or specifically something prepared from home.  She is the self-proclaimed 'Bacon Princess', eating about 6-7 pieces each morning.  The group Social Worker was joking that every time she comes to the floor it smells like bacon.  The Galley staff member told me the majority of the patients on the Unit also love and request bacon, likely due to the saltiness. Mireya is definitely craving salty...tonight she asked for club crackers, saltine crackers and pretzels.  We won't put a lot of stock in the request or stock up on those items, because it could all change by tomorrow morning.  Chemotherapy has that affect on the taste buds. 

We're trusting the Lord in every area of this process and believing for steady increase.  Prayers are going up all over the world on Mireya's behalf.  God hears every prayer, and continues to assure us he is present and working it out. 

One Step Closer

Apheresis Machine

Jalen was a Super Hero today.  I will remember this day forever.  Despite it all he pressed through his fear and did what only his body is designed 100% to do.  We arrived at the hospital, got registered and went to the Hemoc Clinic.  Jalen received the last GCSF injection, had his IV placed and labs drawn.  He was handsomely rewarded for being a such a trooper.

We immediately came up to the PICU (Pediatric Intensive Care Unit) to have his line placed and to begin the Apheresis process of harvesting his stem cells.  Jalen's room was filled with lots of cool things celebrating and reminding him of how awesome he is as a Super Hero Donor Brother.  Within that small window of time we were greeted and bombarded by a gang of people who wanted information, needed signatures, or wanted to revisit the procedures in detail.  It was very overwhelming and only added to Jalen's angst.  How many people can you fit in a PICU patients room?  There were approximately 12 in rotation at any given moment.

Anesthesia was able to put Jalen under within about 20 seconds.  They proceeded to hook up a few additional monitors and my boy found some combative energy, so he had to be taken up a notch.  Once he was settled and all his vitals were steady, the team placing the line started laying out and lining up their supplies.  At that point I started to question if I 'wanted' to be in the room while they inserted the line.  After a very brief discussion, I decided I would wait in the Family Lounge until the line placement was complete.  The process normally takes 15-30 minutes.  It was hard to leave him there, but I was assured as soon as it was done, I would be called before the Apheresis team started harvesting Jalen's cells.  I was told no news was good news.  I went into the Family Lounge and began to pray for both my children and their respective halves of the whole picture.  After about 40 minutes, no news definitely did not feel like good news.  I began to wonder if something was wrong.  Each time the main door to the PICU opened, I could see into Jalen's room and they were working hard.  I later found out several attempts were made to place the line in Jalen's right leg, but due to the close proximity of his artery and his vein, they were not able to get the line in successfully.  They kept getting the artery which eventually caused an enormous hematoma under the skin.  That area was bandaged and they moved to the left leg which finally was a success. 

Jalen came to and was mildly combative.  The harvesting of the cells was extremely important, so the Doctors decided to give him medicine to relax him and allow him to sleep so they could get through the process as quickly and smoothly as possible.  The Apheresis machine withdraws the blood from the body and separates it into plasma, platelets, white blood cells and red blood cells.   The stem cells are removed and the remaining components are returned to the body.  A anticoagulant medication is mixed in to prevent the blood from clotting while outside of the body and saline is given to replace the removed components.  The procedure normally takes 1.5-3 hours.  Jalen's labs showed his counts were lower than expected, so they decision was made to collect cells for an additional half hour to try to collect as much as possible.

Once the cells were collected, it would take about an hour to determine if we were successful in collecting the 4 million cells needed for Mireya's transplant.  If we were unsuccessful then Jalen would be given a double dose of the GCSF and his cells would be harvested again.  The transplant would still be conducted as scheduled, because Mireya's conditioning schedule is very specific and on the 4th day she would need to receive what cells were collected from her brother.  If it was not enough, she would receive a second transplant on the following day.  We were notified later in the evening, the apheresis of Jalen's cells did not produce the required amount of cells to complete the transplant and he would need to be re-harvested tomorrow morning.  This is not the news we wanted or expected to hear, but we will plan to repeat the process tomorrow and trust that an additional dose of the GCSF will produce what we need.
It took a considerable amount of time for Jalen to come out of the fog of all the meds he'd been given. He would have small moments of rambling and crying fits.  I was really concerned because he just could not be roused out of it.  Eventually (3.5 hours later) he started responding to questions with clarity and snapping out of it.  He hadn't eaten in over 17 hours and was very hungry, but still tired.  Shortly after that he asked for snacks and more juice and I could see he was really returning to himself.  He told me he was ready to go home, to which I replied we still have a little more work to do to complete the process and we would be able to go home tomorrow.

Mireya had a difficult night.  Severe headaches and fever plagued her through the evening. Blood cultures were taken to ensure there is no underlying infection and an antibiotic has been added to her arsenal of medications. The Medical team believes it's the ATG that is making her ill.  Mireya tolerated her last round of chemo and her ATG schedule as been drawn out to hopefully eliminate some of the issues she had last night.  So far, those modifications seem to be working.   

Having two kids in the hospital at the same time is a lot.  We're so thankful for our family and friends for all you do to make this easier for us.  Tomorrow is another big day to give and receive.  Please continue to pray for Jalen, Mireya and #TeamBolton.  Your love, encouragement, support and kind gestures are a tremendous blessing to us.  This truly is a new beginning, but we are counting down the days, weeks, months and year to total victory over this illness.  

Gearing Up

Jalen did fabulous today in clinic.  The i-port has made these last few visits a breeze and has boosted his confidence in the process and his trust in those overseeing his care.  After he received his injection, he threw his hands up in the air triumphantly as if he'd just won a Heavyweight bout and said 'tomorrow's the big day'.  He knows tomorrow will require a lot for and from him, but after that his main priority is recovering and feeling good about all he has done to help save his sister's life.

After Jalen's appointment, we visited with Mireya.  She was very excited to see us.  We arrived just in time to hear her denouncing her bathing schedule.  After some serious cajoling, I was finally able to get her bathed, all while she giggled and told me how much fun it was.  I'm hoping she remembers all the fun when it's time to do it again.  It's important that Mireya be bathed one to two times a day to eliminate bacteria that naturally resides on the skin that could lead to infection.  I also noticed Mireya had a new dressing, which means she allowed one of the Nurses to change it.  I was pleasantly surprised because she has not allowed anyone to change her dressing in over 8 months, but I welcome the break from the task.

Mireya is receiving what seems like a gazillion medications, so there are multi-pumps and lines connected to her, but overall she is managing well.  Her hemoglobin was lower today, so the Medical Team decided to give her a blood a boost with a transfusion.  She's receiving her second round of chemo and ATG today.  So far so good.  As Jalen proclaimed, tomorrow is his big day.  We have an early start and a very full day.  We're praying that Jalen's body will do what only it can do without issue and his surgeries, the harvesting of his cells and his immediate recovery will go smoothly.  Continue to keep us in your prayers.  God is working it out!

Let's Get It Started

Jalen started his conditioning regimen to increase his cell counts in preparation for their debut later this week.  He's scheduled to received these injections daily until Thursday.  The Medical Team believes Jalen has Gilbert Syndrome (prounounced jeelbear).  Gilbert is a mild liver disorder that affects the break down of red cells in the body.  As a precaution, he will need to be monitored very closely during this transplant process.  Stress and anxiety are common factors in elevated bilirubin levels with Gilbert.  We fully understood the extent of Jalen's alarm and worry over having to be his sister's donor again.  We expressed our concerns and loosely suggested Jalen have some sort of contraption available that would allow him to inhale nitrous oxide or some sort of relaxing solution as needed.  It probably sounded crazy and over the top to them at the time, but after having Jalen retested and the level still being double where it was a year ago, we're having discussions about putting things in place to help eliminate his level of stress and worry.  Included in our arsenal of relaxing medicine, breathing exercises and numbing cream, we have now added freezing spray (basically the artic freeze for shot locations), an i-port (subcutaneous to eliminate multiple sticks) and the Anesthesia Team is on tap as needed.  The insuflon catheter (i-port) is awesome.  Having it placed, was not without opposition or tears (mine and his), but it made administering his injections today a breeze.  From zero to done in twenty seconds.  Go Jalen!  I love my boy and I'm so proud of him.

Today marks the beginning of the process.  Mireya's chemotherapy has started.  My heart is heavy.  It's difficult to leave the hospital and live your family life in this mode of separation.  It's already been a pretty long day and we're back at it tomorrow.  Continue to keep us lifted.  Special thanks to Lisa, Fran and the volunteers of Connors Heroes for pulling off the unimaginable....another amazing room for my Princess. Simply beautiful! Mireya LOVED it.  Makinley and Jalen also appreciate how you (as always) included them. Quentin and I also love the 'Parent Pack'. Thank you for making our space on the Unit feel like a lovely place to be, despite our days ahead.  You are a blessing to us and in the lives of so many children and families.