Thursday, August 6, 2015

What's Going On ...

Well, today is Day -6.

In the world of bone marrow/stem cell transplants, the conditioning days (chemo days) are counted down in minuses up until the day of transplant, which is Day Zero. Then, the days are counted up from zero to 100.

Because I am such a visual person and I think it helps to see the bigger picture, this is hanging on our hospital wall. 
{And, also because I'm super OCD about schedules and calendars so I have marked throughout the rest of the month who is staying with her on what night ... just ignore that part, which has already changed. Darn it! I hate scratch-outs!}

I thought it would help La Petite Belle to cross out days that she completed. It takes a whole second of our 86,400 seconds we have to deal with each day. So, after the cross-out, we only have 86,399 left.

La Petite Belle is doing great! The chemo that she is currently receiving is 16 doses in four days. The chemo itself has not affected her. She did vomit Tuesday evening after receiving her anti-seizure medicine, which does make her a little nauseated. She bragged to the nurses and the doctor how that was only her third time throwing up in her life and she really didn't even know what the feeling was before she did it. She's right ... picture of health this child was.

I'm mostly praying for her to get through this next round of chemo with as little side effects as possible. She starts that drug on Friday. It's the hard one. It's the one that's going to strip her body of her T-cells, empty out her bone marrow, destroy her immune system. It's a very strong drug, extremely toxic. Scary when you know your baby is going to be getting it pumped into her body over four days.

The good news is that this regimen has been followed for many years and created by her very own doctor. Other hospitals have adopted this regimen for their own transplants. We are so blessed to have the doctor that we have and to be at this incredible facility.

With that said, Texas Children's Hospital is quite amazing. The staff goes above and beyond and there's great support here, especially in the BMT Unit. There are several organizations who work with this unit by creating ways for this stay to move along as quickly as possible.

One of the wonderful organizations, Called His Grace Foundation, has adopted this unit. They are a fantastic support to families. The foundation is named after Grace, who had a bone marrow transplant many years ago, and her family, who was local, saw the needs of the other families who weren't local during this long process. They bring a few meals each month, provide $40 for each family to Target or Walmart for needs during the week (they actually do the shopping for the family), provide chair massages for people in the unit once a week, and deliver an incredible welcome basket full of anything you think you might need for your stay. It was a tremendous blessing!


They also help with parking, which is HUGE expense, y'all. It's $12.00 a day, every day, for over 30 days. Then, you have your clinic visits about three days a week for some time. Parking will run someone about $700 when it's all said and done. Crazy, huh?

They do so much more. Go to their website for more information - hisgracefoundation.org.

La Petite Belle's days, aside from the numerous bags of drugs being hung and labs getting drawn, have mostly been filled with lots of video-game playing and movie watching. She has developed an even greater love for word searches, which she's a master at, and crossword puzzles.

She's also in the middle of recording an original song with another organization called Purple Songs Can Fly. She brought her guitar with her so she's been strumming around quite a bit too.

There's always something going on if the kids feel well enough to participate.

We've been encouraging her to get out of her room as much as possible now while she's able, and she has been.

We don't know what the days to come hold for her. We only know what the doctors tell us. But, thank God, we have a Father, who knows exactly what's ahead. He has prepared us for this time. And, He will sustain La Petite Belle and us through it all.

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses. Thank you for your prayers and support! - 

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