Screw the candy I got the BEST Halloween treat EVER!!!! Dr. Dvorak (one of Rileys MANY doctors) called yesterday and engraftment results are in. Her stem cell count is at 98% and they are MINE!!!! Woohoo!!!! This is great news…much higher than the expected. SCID immunity post transplant can be considered on their way to “functioning” with engraftment levels as low as 20% so the fact that her numbers are so high is fantastic. They may fluctuate a bit but she would have a long ways to fall before it became a major cause for concern. She has given herself quite the cushion. Her T-cell count is still relatively low at 35% and she has no B cells but that is to be expected at this stage. Our next milestone is seeing some function in those T-cells which is hopefully the results we will get from pending tests expected to be in late next week. If everything keeps trending up, the function comes through AND Riley stays infection free we will be starting to talk discharge dates!!!! GAAHHHHHHH!!!!
As we approach even just the thought of bringing Riley home we are beginning to tackle the HUGE booklet that is “discharge requirements” and get our house ready for isolation precautions. Not only will we be pulling Presley out of preschool but she will be on respitoray isolation as well meaning no contact with other children, no playgrounds, no grocery stores…nothing, home all the time. All you parents of toddlers just cringed a little, huh? Yeah, I know…isolating a 3 year old?…chew on that. Grrrr…No joke…we will be the bubble family. We have so much that needs to be cleaned, prepared, purchased, thrown away, stocked, thought through…my head is just in a constant state of “spin”. Since ending my post the other day with that epiphany of “ruh-roh I need to make a list” I have had so many emails and offers of “what do you need”, “I’ll go shopping”, “send me the list”, “register”, “don’t worry about a thing”, “let me get the house stocked for you” I am still so floored at how willing so many are to help and honestly I couldn’t be more thankful. Lets be honest the absolute LAST place I want to be right now is in a Babies R Us…don’t get me wrong I’m thrilled for all those pregnant Mamas and those healthy lil babes but does it bring up a lil hormone craziness that I don’t particularly have the energy to suppress?…uh-huh. 😉
With Riley being our second child and our second girl for that matter we literally bought nothing…we had everything from Presley plus I was breastfeeding and cloth diapering…girl didn’t need a thing. This whole no immune system, chemo, transplant, isolotion bit changes things just a smidge. Not only does she require a fancy schmancy formula and disposable diapers but all those “hand-me-down” goods we had (carseat, stroller, playpen, etc…) can no longer be passed on to our lil Miss high maintenance 😉 And then there are the cleaning supplies and equiptment…the endless amounts of products that it is going to take to keep our home sterile on a day to day basis is outrageous. Needless to say we need a lot of stuff and have to be as stocked and prepared as possible before she comes home. Truly my list of lists is getting out of control. A huge thank you to all that have offered to help and buckle up because I just may take you up on it 😉
Please keep the positive thoughts coming…this is all such wonderful news but we still have a very very long road ahead of us.
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