Aside from the steroids Ty is feeling pretty good. He is still off all oral chemo. So the only chemo he has had in the past 5 weeks is IV vincristine.
Tuesday, March 20, 2012
Horsey Doctor today.
He has a weird rash around his eye, I'm glad it was still there today so the doc could see it. Brady told her all about his pooping woes (he still holds it in for as long as possible which sometimes lasts a couple of days, until his little body literally forces it out) and when they tried to discuss with him that he needs to go potty every day, that didn't go over very well I guess. She suggested having him sit on the pot 10-20 minutes a day to see if maybe he will go if he knows he has to sit there. She doesn't know how stubborn he is : ). Brady told him if he will do that and go potty every day he will buy him a DSXL. (I'm thinking as he is telling me this 'wow, that is a big present for pooping') Tyson took Brady's face in his hands and said very seriously with tears in his eyes, "Dad, I don't think that is very fair." So we are to continue the mirilax and add a stool softener. The doc suspects that internal hemorrhoids are the culprits of causing him so much pain. She said regular soft stools will help.
So ANC is STILL 600. That means we keep him off oral chemo for another 2 weeks. He got his IV Vincristine chemo today and we start him back on his five day round of dexamethasone (insert sarcastic fist pump yeeehaaaaa). She also took him off of his Septra, she said it sometimes can cause low counts as well, and it may be the cause of the weird rash. She said if they decide to keep him off of the Septra (Septra is the antibiotic he takes every Mon and Tues) they will substitute it for a different IV medicine that he will get once a month when he comes to clinic. She is also hoping that his lips will improve as his counts improve...makes sense cause they always seem to suffer when his counts are low even though that doesn't really happen to the other kids that I know of.
They are also having him tested to see if his body doesn't break down the 6mp right to see if that is partially the cause of low counts for so long. That way they will know which chemo doses they need to reduce. Apparently about 1 in 100 kids have the TPMT enzyme deficiency that they are testing for, it's a test they have to send to California so we will know the results in about 2 weeks.
Wednesday, March 14, 2012
Thursday, March 8, 2012
Ty's lips yesterday...the last two big sores are almost better...
And Ty's lips today! Yay! They are back to normal. He is feeling pretty good now, his last dose of antibiotics was Wednesday morning. The diarrhea is already going away and the painful pooping woes are starting to come back. : ( Hopefully we can stay on top of it with mirilax. ANC 500, PLTS 219, HCT 28.9. So he is improving and with no chemo for the next few days he should be feeling normal for a while. Hoping his bowels can resolve whatevers going on soon but other than that it is great to have a little break. He gets a CBC on Tuesday to see if his ANC is high enough to start back up on half dose of his chemo pills. His next PCMC appointment is in about two weeks. Hopefully they can get his doses figured out so his counts don't tank like that again, but I'm not holding my breath. It's okay though! Life is good and he and we have been so blessed and have received more help and attention than we deserve for sure!
This last hospital stay reminded me that I've been wanting to read a book for a while now that a couple of people mentioned to me a few months ago. It is called Little Green Apples by Jeanne Isom. I found it on ebay and finally read it yesterday and let me tell you, it certainly helped me put things into perspective and helped me find my balance again. A sweet little girl from Utah recently finished her treatment for ALL and a few days later found out she had relapsed and now needs a bone marrow transplant to survive. Ever since we heard that terrible news my head has been spinning with worry that I couldn't shake. This book has helped me find my center again and trust in greater powers than I or even the doctors have. If Ty is to be cured he is to be cured and if he isn't that isn't up to me or the doctors and so I need not worry about the future and what might happen. One of Ty's nurses Marc at PMC is the husband of Jeanne Isom and the father of the boy that the book is about which is what reminded me about the book. Marc is a gentle, quiet, kind nurse and you can tell he cares, I love it when Ty has him. If you would like to borrow my book I would LOVE to lend it to you, it is an incredible story that makes Tyson's battle look like a walk in the park...I'm really thankful Mrs. Isom was willing to share her son's story.
Tuesday, March 6, 2012
Monday the weather was awesome! We took advantage of it and went to Brooklyn's Playground again. Ty wanted to ride his bike there so when we got close we got his bike out of the truck and let him ride the rest of the way. I guess it is that time of year right now cause it seemed like everybody at the playground was coughing...including my kids. Funny how much more I notice stuff like that now. I chased the kids around with hand sanitizer of course. We completely wore Tyson out, he fell asleep at his 1:00 doctor appointment, but not before the doctor got him to giggle a little. It's pretty rare for a nurse or doctor to get a response out of him, Dr. McInturff is pretty good at it. The last of the sores on Ty's lips are peeling off right now. I think he expressed his concern about that to the other docs after we left cause another Doc stopped Michelle (Ty's home health nurse) and had her bring us a urinal so we could measure his liquids. Ty of course still used the toilet a couple of times before we could catch him and make him go in the urinal...but it did its job of having us pay attention and make sure he isn't getting dehydrated. I know, I give way too many details...but I mention it partly because I am impressed at the amount of attention Ty gets, sometimes you feel pushed along by busy doctors and so it is nice to know they care for him and that they are paying attention.
Sunday, March 4, 2012
Ty is feeling much better. He is a different person at home! He has had a lot of fun with the kids and still gets tired but has played a lot more yesterday and today than he has in a couple of weeks. His favorite nurse Michelle has been over to give his antibiotics three times a day. We love her, she has kept us sane through all of these hospital stays and stuff. He gets a CBC tomorrow and then has a follow up appointment at the doctor's office so we will know then if he gets to stop antibiotics and start back up on chemo. I am doubting his counts will be high enough by then but he has surprised me before.
His bum is still sore but better, he still has diahrrea but it is much easier to clean up and manage at home. Sorry for the fuzzy pic, it's hard to get a good pic when they are moving so much : ) I'll post an update after we go to the doc. Thank you for the prayers, dinners, and thank you for caring for our other kids when we can't.
Friday, March 2, 2012
Thursday, March 1, 2012
He is actually wanting to play a little today for the first time in two weeks. In the pic above he is playing hide and seek. : ) It was pretty hard to find him until he popped out of his blanket...