Friday, May 13, 2011

Where Do We Go From Here?

We just spent 3 hours with the Pediatric Hemoc Team to discuss the results of Mireya's bone marrow biopsy. We are definitely on information overload. Some of the terminology or phrasing may be off, but I'll do my best to regurgitate what is going on. There is no indication of malignancy or cancer, but the biopsy does show is that her bone marrow is not functioning properly. It is very sluggish, thus causing her counts to fluctuate and remain on the low side across the board. The cellular makeup/breakdown in children her age is expected to be at 96%. Mireya is somewhere between 5%-20%.

It is to early to diagnose what the issue is, but there are several conditions that can cause your bone marrow to behave this way. In many instances it can recover and begin to function properly on it's own. We are believing Mireya's body will begin to respond and her bone marrow will begin to function and operate as it was created to. A series of extensive tests are being conducted to rule out additional factors. If Mireya's levels do not begin to increase within the next week, they will begin Phase 1 of Immunotherapy. Phase 1 consists of administering a low level steroid. This Phase is designed to stimulate the system and prayerfully maintain her levels and keep them from falling any lower.

We were seen in Pediatric E/R on Wednesday night because of the presence of new petechiae on her chest, neck and in her mouth. The levels taken that night were low but they opted against doing a platelet transfusion pending our appointment today. The levels today were slightly higher giving the Drs. a hope that her system may be beginning to respond favorably. If Phase 1 doesn't produce the desirable response, then we move to Phase 2. Phase 2 requires a higher dosage steroid along with a 'LMNOP' drug designed to 'reboot' her bone marrow system. Please don't google LMNOP or you'll probably get the 'ABC' song in return. The actual letter sequence for the second treatment is GM-CSF.

If this Phase fails to show promise and the large scale testing doesn't show anything conclusive, then we our final option is a Bone Marrow Transplant. Aplastic Anemia would likely be the diagnosis at that point. The process of a Bone Marrow Transplant is long and tedious both in preparation and recovery. Mireya's siblings would need to be 'typed' to determine if they are a match for her. This is the most ideal scenario. Other Donors can voluntarily donate and be matched via the registry, but insurance stipulates they will cover the cost of siblings to be 'typed'. We do not expect to get to this point, but we were certain to ask a lot of questions about the process in order to fully understand what is involved. I heard porta-cath, chemo-therapy and a lengthy hospital stay. And to that I say Jesus, Jesus, Jesus! We definitely feel better as a result of having more information and understanding the treatment options and plan. The Hemoc team is awesome! The Drs. are not in a rush to diagnose and treat, but we are in 'waitful watching' to fully gather all the necessary information and determine where we go from here.

Reya's counts will be tested each week for the next few weeks. With marked improvement we do nothing. If the levels decrease we start Phase 1 and only if the levels go below the critical thresholds will we have to do any type of transfusion. The Drs. are being very cautious about transfusions because over the course of time Mireya's body will take on the genetic makeup of the blood products received. If we can manage without having to do any type of transfusion, that would be essential for future matching purposes, if that becomes necessary. Our prayer remains that Mireya's health will increase on it's own. This process can take 3-6 months to see marked improvement. God can turn this around in an instant. So we rest in Romans 8:28 And we know that all things work together for good to them that love God, to them who are the called according to his purpose. Please join us in lifting this up before the Lord. Prayer changes things!!!

No matter what the count is, there is one number that cannot be discounted. One God and he is #1. John 3:16, Psalms 23, Isaiah 41:13 and Romans 15:13. He's all up in the numbers, even has a chapter just for that, but don't tell the lottery folks (thanks AJ). He always remains bigger than our problems or situation and is worthy of our praise no matter what happens. Stay tuned....


  1. Awesome update and tremendous perspective. I know that God has not only begun to answer my prayers Mireya, but has answered (completely) the request. You guys stay encouraged and trusting in His word. We walk by faith and not by sight. God is well able to do exceedingly, abundantly above all we ask or think according to the power that works inside Mireya, her dad, her mom and her siblings. God bless ya'll. Rasheeda and I got it lifted before the King.

  2. Thank you so much!!! The prayers of the righteous availeth much. We appreciate the love, support and prayers.