Saturday, June 30, 2012

Second Time Around

This weeks appointment was a tough one.  We've been holding out for Mireya's body to make a turn around, but an additional chimerism test and the downward trending of her counts show her graft is failing. We were hoping to avoid a second transplant, but the next step is the DLI (Donor Lymphocyte Infusion) or Boost transplant.  We are exactly 6 days away from what is medically considered Mireya's ''new birthday', when she received her bone marrow transplant last year.  It's a hard pill to swallow because up until a few months ago we were having incredible success. The blessing is we still have our Super Hero, Big Brother Donor Jalen.

Please, please, please pray for Jalen.  He has spent many days questioning if his sister is going to be alright. He is extremely anxious at the thought of having to go through another medical procedure to help Mireya.  The DLI will require more for Jalen than the original transplant.  Jalen has a great disdain for needles.  I don't know many people who aren't disturbed to some degree when having someone insert a needle in their body.  Jalen had a bad medical experience after running into a pole when he was 5.  He ended up needing several stitches about an inch below his eye.  He was afraid and very uncooperative.  He ended up being papoosed (basically wrapped up like a mummy) and restrained by two grown men as they closed up the gash.  He cried, I cried and that experience alone gives him great anxiety in medical settings.  Going to the dentist for a simple checkup has caused him to hyperventilate when just having his teeth counted.  Sedation is going to be key in making this less traumatic for him.  He was sedated prior to the transplant and did exceptionally well.  We're doing our best to help calm his fears.  We'll be working with the Psychology division of the clinic for some positive reinforcement and creative angles to assist us too.  My boy is long and lean, but he is bull strong.  Couple that with anxiety and adrenaline and it won't be cute if we're not able to calm and relax him prior to these events. 
Jalen will have to take the same growth hormone (GCSF) as his sister to help build his cell counts in preparation for the boost.  His cells will be accessed via his blood as opposed to his bone marrow.  The team will have to determine when Jalen's cells are at their peak and the procedure for harvesting his cells will take place.  The GCSF and determining the peak time to harvest his cells will be done via injections and by drawing other words needles.  Harvesting his cells will require a port to be placed in his chest so that his blood can be accessed for several hours as needed.  The goal is to collect about 10 million cells.  Additional cells will be collected and frozen should we need them in the future.  Jalen will  have to be hospitalized for this part of the process.  The port will be removed prayerfully the same day, provided everything goes as planned.

We met with the Transplant Coordinator who was one of the Nurses we had on the Bone Marrow Unit last year.  It was good to see and work with a familiar face as we walked through the preliminary steps of the transplant procedure.  Mireya will receive chemo, but it will not be as extensive as last year.  Our stay on the Bone Marrow Unit will hopefully only be about ten days or so.  We are believing it will not take long for Mireya's body to show success based on its familiarity with Jalen's cells.  We found a similar case of a young lady diagnosed with Severe Aplastic Anemia.  She was taken off her medications about the same time frame as Mireya and had a late graft failure following an otherwise successful transplant.  She received a DLI and it took about 4 weeks to see the success of the transplant.  She has not had any issues since receiving the boost.

There is a greater risk of Graft vs. Host Disease (GVHD) following this type of transplant.  We had no issues with GVHD during our first transplant, and we are truly believing and asking for prayers that we will not have any issues or signs of GVHD this time.  We're praying for a swift engraftment and successful and harmonious results. Mireya will be immune suppressed, so we'll have to deal with another '100 days' and isolation.  The DLI may not be handled as strictly, but it will also not be addressed lackadaisically either. We'll have to take it a day, a week, and a month at a time to see and monitor Mireya's progress.  Mireya has definitely been looking forward to going to school.  This timing will likely affect her ability to do so. The hard rule is no school for one year post transplant.  Children's Hospital has a great home bound program and we'll be working with the Educational Specialist to ensure Mireya is on track as needed.

We've decided to handle Jalen and Mireya's procedures separately.  He will be hospitalized for his procedure where we both can be there to support and love him through it. We didn't have this choice during the bone marrow transplant.  Both had to be done at the same time, so I was not able to be with Jalen as he went through this last year, and Quentin wasn't able to be with Mireya because he had to take Jalen home and care for him. Once the harvesting is complete, Mireya will be hospitalized for the transplant.  We are about two weeks out from starting this process.  Although we've been down this road before and have a pretty good idea of what to expect, there are many variables involved.  Thank you for your prayers, encouragement and support.  It helps to lift our spirits and it fills our hearts with gladness to be covered in prayer and surrounded by so much love.  We are trusting God for victory for our sweet girl and praying for peace and comfort for Jalen in times where he is troubled.  God answers prayers and will continue to show himself mighty through it all.


  1. And Prayers for Mommy and Daddy, you've endured so very much. Venus I know once this is behind your family you will use this experience to comfort others and that gift is priceless. In the meantime hug your babies and stay strong.