We’re back!!! (and I just discovered if I hold the exclamation key, I get the option for this ! or ¡)
So far so good. Jesse is handling the il-2 very well. Last night she wasn’t interested in eating, but it could be worse.
We did suffer a “I wanna go home” melt down. I wanted to cry with her because I want to go home too. I’m over Fred the pole and his lines, which I untangle many times. On a funny note, Fred is getting in touch with his feline side… I’ll post a picture later.
But all of this is crucial to making sure Jesse doesn’t have to do this again. And the nurses on 8b are fabulous, which makes stays easier.
The volunteers sometimes frustrate me. The reason is some think this is our first stay, and mention the playroom right in front of her. I’d let her go if we weren’t attached to “Bob” the pulse ox and temperatures were below 37 c. (98.6f). The last thing I want to do is be in the playroom with a fever around other kids getting chemotherapy. And I do understand they mean well.
Jesse is smart too because she knows every time they come in she can get them to bring her toys. I don’t think she really cares what it is, just wants to see what they will bring…
Her temperature hasn’t been high, about 99. A side effect of il-2 is potential fever. Hives, cough, and increased heart rate are too. When we began the 96 hour infusion, they gave her Benedryl and Tylenol.
We started at 5:30pm Monday, and won’t finish until late Friday. Plus before Jesse can go home, she needs a blood transfusion… Unless by some miracle her numbers come back up. I would much rather get a transfusion and go home where she run out that increased energy.
Luckily her ANC was 1812, which is in the normal range, and shouldn’t decrease because the il-2 is an immune system booster, specifically t-cells.
Other than that we’re just hang out, I’m working when I can… Mike came to visit yesterday because we though the Sub had a blown seat fuse… He had to take it back with him to a get a new motor for the seat. At least the seat was adjusted for him to drive. He likes to drive in the sleeping position… I like to drive sitting up. Luckily our leg length is the same…
Jesse keeps wanting me to play Barbies or Jumpin’ Monkeys. Nurses and Child Life staff have stopped by to visit her, and that has been great. Makes the days go by quicker. And even a nurse from PACU saw us and came down for a visit 🙂
———————
Thank you for the prayers 🙂 And thank you for praying for Emily Hubbel. She has now entered the time of the stem cell rescue that was hardest for Jesse.
Please also pray for 2 more families, who have recently learned their child is fighting neuroblastoma. I met one in clinic who is from Yorktown. He is 5.
Here is a link: http://www.caringbridge.org/visit/Wespak
They are also on FaceBook at Wes’ Fight Against Neuroblastoma
Hey guys, I know you all have to be sick of being there, and I am praying for your continued strength, sanity (for you Soosan) and great progress! All of us on the “outside” keep us in our prayers nightly. Thank God for the nurses on 8b! It can be so draining just to be stuck in that darned room…but like a butterfly…you both will emerge renewed and beautiful. Just an idea…I know the one week we were stuck up there we ordered pizzas and had a pizza “party” with the nurses in the room LOL. Change of pace…and it got Meggie to actually eat. lol
Soosan, it is so good to hear that Jesse is doing well with round 2 thus far. I am glad that you guys are in such good hands there. Keep your head up. I will continue to pray for your family and also the other families that you have mentioned. It is neat that you were able to meet the family from Yorktown. I am sure you will be able to help them in so many ways with questions, etc. Have fun playing Barbies and Jumping Monkeys, lol!!! Lots of love to you all ♥♥♥