Info Overload (BMT update)

I've already starred at this screen, preparing to write this post for the last half hour trying to fathom how I can possibly try and explain to you all the thousands of details I've taken in lately... *sigh
I just need to start writing. I'll spit it out as best I can, but the words and phrases are running through my mind and then leaving it, faster than lighting. I need to trust that those of you who read this understand that there are many more details I can't describe in words, the moments and pauses Lyle and I had in the meeting where the info we received made our hearts stop...and then beat again. Please understand I want all of you to clearly understand what our baby girl has to endure, and its hard to put emotion into a keyboard, but the info I have taken in has been scary as hell but parts have also been so extremely hopeful, happy and rare!

The Big News
Our BMT team was amazed that within the first couple weeks of their search, three 10on10 (perfect matches to Bella) came back! For most it takes months to find even one 10on10 match. That is truly amazing, giving that OneMatch is closed for xmas holidays as well. They started the search Dec. 18th, 2014.
Bella needs a perfect 10on10 match for her BMT, that gives her the best possible chance of her body accepting the donor's marrow and least possible chance of rejection...even a 9on10 match is much more risk for Bella. We want a 10on10, Rejection and complications can mean death, we want the least possible chance of even thinking we may lose our baby girl through this.

Here's the gut wrenching, punch in the gut... 2 of those perfect matches are no longer available to donate. They can't tell us why, and trust me, our BMT team digs and digs to make sure...but they just can't. Perhaps they became ill themselves or something serious came up, needless to say they can't be Bella's donor.
HOPE: One out of the 3 that's left, they (Calgary) are still waiting to hear from and we are praying they are available to donate. The process allows them to only look for 3 donors at a time.
So why would they even tell us? Right? Well, because they are so so amazed at finding 3 perfect matches in the first shot that they want us to remain hopeful that Bella is a great candidate to find and be able to rely on another perfect match.

So Now What?  Here's What We Do:
We keep Bella at her absolute best before transplant. We want absolutely no chance of anything causing this transplant to be put on hold, Bella needs it ASAP, and she needs to be at her absolute best going in. Currently she is on meds to suppress her immune system, keep her skin under control (reduce flare ups) and watch her closely to make sure no chance of any virus or infection comes near her.

Time Line
1. Currently: Waiting and completing Bella's entire pre-transplant work up. This is where every doctor in the hospital checks Bella over to gather all her 'normals' and baselines, pre-transplant. I laughed when they told me "every doctor in the hospital"...been there...still doing that. Anyway, these work-ups will be on everything from Bella's dental check to a full CT scan.

2.Wait: Pray for an available 10on10 match

3. Confirm A Matching Donor:  Once a donor has been found and confirmed they go through rigorous rounds of testing and evaluations. (1-2 weeks) The final day before Bella starts her Chemo is the day where the donor makes the absolute decision to say, "yes" or "no" to donating their marrow. They have a counselling session this day. When they have said, "yes" at this session, Bella begins her Chemo.

4. Day -8: This is the start of Bella's Chemo. 8 days of Chemo meds to prepare Bella for her BMT. These may be part of the hardest days through this process. This week they kill Bella's entire immune system in a very specific way so that there is the best possible chance her system will accept the donor's through transplant with no rejection or complications.

5. Day Zero: Transplant Day. Bella receives the donor's bone marrow through her IV line. I probably will still have not slept for the last 9 days at the point.

6. Post Transplant Days: Every day from here on out is a plus +.  From +1 day and forward they monitor Bella very closely to make sure of no rejection or scary complications while her new immune system builds. For the first couple of weeks we still have to be so so careful and pray and pray that no complications or risks become serious, or happen at all. Each day she is well and gets better is going to be a celebration.

7. Day 100:  This is the day (post transplant) that they title Bella to be "well-engraft" or in other words, "out-of-the-woods."  So that's about 3 months in hospital monitoring....we still have at least 3 more to go.

8. Dropping Meds:  After Bella is well-engraft and if she continues to do well they still have certain monitoring times-lines for kids post transplant. They usually say to expect to remain in hospital 6 months post transplant. So after Day 100 and for the months after that, they will look at how well Bella is doing and when the time is right, start taking her off all meds. Not only is a BMT a cure for Bella, but this process means she does not need life long medication. So eventually she will be off all meds, and not rely on any meds to remain healthy, her new immune system will do that work!

Now you think I have covered it all...no no no my friend. I haven't even started telling you about the Genetics side of this whole story. We know Bella has a Immune Deficiency, one so bad that only a BMT can cure...but we do not know why. Why Does she have an Immune Deficiency?
That info is for another day, I'm beat.