Day 223

Yesterday was a long day. That morning I got up at 5 and got all of our stuff ready for the trip north, whipped out the blog and took a shower all before Tessa was awake. When she woke up and remembered that we were headed back to the hospital she asked for a laundry basket and to be covered with all the blankets so that she would be safe. Poor kid.

Tessa in her Safe Spot

Tessa and I drove up to the hospital, Casey followed us in a separate car (he gets his weekend away this weekend). As is par for the course when you are at the hospital everything took forever. It was 2.5 hours before they even got the IV in. The IVIG infusion took about 3 hours, and then an extra half hour to fill her up with extra fluids (she was a little dehydrated). Casey was awesome and took Tessa wandering around the halls while I took a (very) short nap. Tessa walked her "kitty" which was made out of the board they were going to strap to her arm to keep it from bending, but her sad little face convinced the nurses not to.

Tessa and daddy walking "kitty"

The good news is that Tessa was not admitted. She even gets to go down on some of her meds! We just have to keep a close eye on her (cuz I'm not constantly hovering over her and watching every move she makes now :/). We left the hospital last night at 7 and Tessa and I drove to my parents house in Carmel. We are both wiped out. I slept until 11:30 today (yes!!!!), and she passed out on the couch this morning and is still dreaming peacefully.

Socked out on  Nana's couch

Thank you all so much for your prayers, they obviously worked and kept us out of the hospital! It means so much to our family that we have such a supportive network of friends and family. We are grateful to you all.

I will try and do a better job of keeping everyone informed of Tessa's adventure! I promise promise (as Tessa would say).

Also want to get the word out about something wonderful that Casey is doing. Being so affected by Tessa's experience, we both want to be able to give back in some way and Casey has found something that is right up his alley. He is participating in a fundraising bike ride called the Canary Challenge to raise money for cancer research. If you are interested in reading a bit about his experience and motivation for participating, or if you would like to make a donation please visit his link here:

http://canary.convio.net/site/TR/Events/General?px=1018531&pg=personal&fr_id=1060

Thanks for taking the time to check this out. If it wasn't for all or the research and work being done in this field, our family would be in a very different place.

Love and prayers to you and your families! 

Day 222

Here's the thing about transplants. There comes a time after you've gone home that you think life will eventually be "normal" again. You've got the medicine down to a science, you only have to go the the hospital every couple of weeks, you've even had a couple of playdates. Everything feels like it's coming together and you're moving past that fear rooted life you'd been living for so long. Then your kid stops eating. The tummy pain comes roaring back. And when you take her temperature and you see she has a fever you can feel your heart land on the soles of your feet.

Things have actually been running pretty smoothly for the last couple of months. No soul chilling issues, labs are good, and the meds have slowly been going down. Tessa's level of activity is still low, and we still have to be super careful about germs and she has to wear a mask indoors (houses are generally ok). But, her swelling has gone WAY down, she's getting hair, and she is smart as a whip! Her favorite game is still Make the Babies Talk (Casey and I have pretty much been completely depleted by this one), favorite color is still dark pink (not light pink, dark pink), though her favorite princess is now Belle (mostly because my Aunt Julie sent her the most incredible Belle gown, which is her primary ensemble these days).

But to stay current and not overwhelm myself trying to catch you up on the last few months... Tessa has had styes in both her eyes that have lasted for about a month and a half. Of course, without an immune system it is difficult to fight anything off but with every blip in her health comes the fear of GVHD (graft versus host disease- her body rejecting her transplant). We have had several trips to the doctor to keep an eye on these babies. Then this last week Tessa stopped eating, her tummy pain flared, and she came down with a fever. We went to the hospital on Monday (we were there from 8:30-3) and got home at 7 that night. She saw her regular transplant doc who informed us that if she hadn't made progress in 48 hrs (eating, solid stool) she would have to be admitted and have a scope to check her GI track for GVHD (this would mean a return to steroids). Tessa also got to visit the eye doc who reported that her styes do not look like GVHD in her eyes (phew!) but that she has developed a cataract in her right eye as a result of prolonged steroid use. Ugh. Yesterday morning (Tuesday) I got a call from the doc saying her IVIG levels (a measure of her immune system) were low and she needed to come in for an infusion today (Wednesday). So we will be back on the road 36 hours after getting home. Good times. The good news is that she actually ate yesterday and seemed to have more energy. Hopefully this will mean that she won't have to be admitted today and that we will be able to leave after infusion. 

Please keep a little space in your hearts for Tessa today as she is evaluated by docs, pray for no GVHD!!! 

Happy girl at her cousin Kelly's wedding

Who's that cutie?

Exhausted girl waiting for her pokes at the hospital