Tuesday, August 7, 2012

Moving Forward

This is our last week of controlled freedom.  We've been at the hospital about four times a week doing scans, exams and prep work for Jalen and Mireya.  Mireya will be admitted to the hospital next week to begin her chemo therapy and conditioning regimen.  Jalen will also begin his conditioning regimen.  He will be admitted later in the week and the transplant will occur at the end of the week.

Jalen first big appointment was a challenge.  I'd done a trial run with his relaxing medicine and it totally took him beyond relaxed.  He was dizzy, unsteady, walking into things and it made him sick.  After talking to our pediatrician I decided to dial it back when I gave it to him for his lab appointment. Unfortunately that dosing had little affect on relaxing him.  Tom David, the Chaplain and Tim, the Transplant Coordinator came to offer support and encouragement for Jalen.  They did not leave our side until we were done a few hours later.  Jalen was in good spirits and did great throughout the appointment until he saw the technician preparing the twenty plus vials for his bloodwork.  He began to weep and softly said he didn't want to do it and asked if I would do it instead. *tears*  I would do it in a heart beat if I could.  Midway through the process, both of Jalen's veins gave out and we had to seize/make an opportunity to get it done.  He was extremely brave but between nerves, anxiety and tears it took a lot of coaxing and eventually brute force to complete the task. 

Over the last week, plans have been revisited and modified.  Up until this point, it was believed Mireya's graft was failing.  Another series of tests show Mireya's body actively fighting my boys cells, and as a result we will not be doing a boost, but repeating the full transplant process.  We had also planned to handle their procedures separately.  However, in our full scale meeting with the Medical Team, the discussion and point was made that Mireya receiving 'fresh' cells is the preference.  To eliminate all doubt we're going with the 'preferred' method.  It will take some major juggling but we will work it out so that they are doing treatment simutaneously.

It has become necessary for Mireya to receive both blood and platelet transfusions more frequently over the last few weeks.  It's very disconcerting, but the cells are not lasting for any great length in her body.  We are definitely at the place of needing to get this done quickly.  Reya's patience and willingness to be an 'active participant' with the process continues to dwindle.  Understandably so, but it is another layer in the balancing act that has to be handled with great care. Her feelings matter, even though she has no real words for them.  

We received a call that one of Jalen's lab results came back elevated and it needed to be determined if he could 'still' be the donor? Um excuse me he is the donor...he is all we have.  The real issue is making sure it is still safe for him to be a donor right now.  Those labs and tests would have to be repeated and compared to the original results.  In preparation for this appointment, I bumped his medication up a notch.  We had a time of prayer and by the time we arrived, he was in the zone.  The staff 'got the memo' on all things that could go down and prepared to put him in a room to contain him (with reinforcements).  I told them I thought he would be okay having the labs drawn in the open Fishbowl area and our Nurse was open to trying that first.  I set up the Xbox and Jalen played for a little while so the numbing cream could start working.  When he was approached by our Nurse to draw the labs, there was a little resistance, but I held his wayward hand, counted to three and the needle was in.  I was so proud of Jalen and he was super excited too.  I'm hoping this gives him a greater confidence in his ability to get through the consecutive days of injections and labs. 

This week we have visits for counts and consults for Jalen and Mireya.  Our last free week before were on lock down for for six weeks in the hospital, then isolation for several months at home.  Thank you so much for continuing to pray for us.  Everything we stand in need of, the Lord will provide. Peace, Strength, Provision, Cellular Compatibility, Recovery, Success and Victory!  Thank you Lord for helping to eliminate the pressure and range of emotions we feel.  Thank you for lifting us when we're low.  Thank you for providing for us and making a way.  We thank you these cells will co-habit in peace and allow the miraculous to unfold.  Thank you for orchestrating healing and working out every aspect of this process in Mireya's body.  All things are working together for our good and NOTHING is impossible with or for God!


  1. Don't know if you will remember me, but we made contact months ago where I shared that as a child, I also had aplastic anemia. I've been keeping up with your blog and this was a tough one to read. My thoughts and prayers are with all of you because this situation puts pressure on every family member in different ways. God bless......

  2. You and your family's strength are in my prayers!!!