Friday, August 14, 2015

The Big Day & Days to Come

Our sweet daughter's stem cell transplant started at 1:32 am on Thursday, August 13th.

We anticipated and waited all day and into the night for this precious gift. So, we were quite tired when it finally arrived.

The transplant itself was pretty anti-climactic, since it was a simple transfusion just like the ones La Petite Belle usually gets weekly. Difference is this transfusion will save her life.

Beau, K Belle, and myself surrounded La Petite Belle and prayed as her transplant began. It was very emotional for me, knowing what we've been through and how long we've waited to get here, but also knowing the hard stuff that lies ahead.

It was an exhausting night. There was lots of activity ... nurses in and out of the room, IV pumps beeping on and off throughout the night. 

La Petite Belle insisted on her sister staying the night with me that night. Actually, seeing her sister really perked her up more than we could imagine. Too bad K Belle can't stay longer. After a dose of Ativan for nausea, the sisters played Mario Bros for hours and there were some great moments of laughter, which is a common occurrence in this family that hasn't been heard quite as often.

The side effects from the chemotherapy have been pretty bad. We rotate meds to help her with the vomiting and pain throughout the day and night.

And, unfortunately the side effects linger for weeks afterward. She hasn't eaten in a week. Actually, most teenagers who go through this won't eat for weeks, even continuing to eat very little after they are released from the hospital. They just don't have an appetite. This is normal. She will be put on TPN today, which is nutrients she would normally get from food that her body needs. She will stay on that until she doesn't need it anymore. Half of the kids go home from the hospital still on TPN and half don't. We're hoping she isn't in the half who have to stay on it. 

There are other side effects that don't show up until a few days to a week after transplant. We're not looking forward to those and praying they are mild. Hair loss is one of those. That may be quite an emotional day for us. But, in the grand scheme of things, hair loss seems trivial. However, for a teenage girl, it's a big deal.

Not only is she in pain, but her vibrant personality is gone. There are tiny moments when we see that she's still in there somewhere. But, seeing her like this is really hard.
Teenagers who go through this have a really tough time. So many feelings and emotions, combined with pain is exhausting. This process requires lots of patience and perseverance. It's not a quick fix. 

It was explained to us like this:
A stem cell transplant is like planting a garden.
The first thing you have to do is pull up all the weeds and till the soil and get it ready for new seeds. The new seeds are planted. Slowly, as the garden is cared for, the seeds start to grow and bloom. Over time, a beautiful new garden will appear. That garden will be made in La Petite Belle's body using the donor cells as her own, and ultimately producing all her "own" cells.
What a beautiful illustration! 
We just have to remember a garden doesn't grow in a day. It takes time, care, and patience, I think a lot of people still don't understand that part. It's not like she has her cells now and everything is hunky-dory. It's just the start. Now, this part of the journey is just beginning.

Somewhere between Day 14 and 21, we should start to see the cells engrafted and her counts starting to come up. Until then, we wait. We have an anticipated release date from the hospital sometime during the first week of September if certain criteria are met.

The criteria for her to be able to be released is this:
1. Her ANC (ability to fight infection) must be above 500 for three days in a row
2. She can swallow oral medicine.
3. No fever for three days.

When I say "released", I mean released to the apartment here in Houston. We will not be even allowed to go home at any point until Day 100+. Like I said, we still have a long road ahead.

We are thankful that the cells are in her body, getting ready to do what they need to do for her. We are also praying for better days ahead. Thank you for praying and believing with us!

My blogging will be more scattered than before because my focus is on taking care of my girl. She requires a lot of me and I will be the main caregiver from here on out. It's difficult to even have one comprehensive thought right now, but I will keep everyone informed as much as I can.

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