Cancelled Chemo

Kurt's white blood cell count too low today to get chemo. He had a really rough weekend and I think we have figured out why. He was done with his antibiotics on Thursday and on Friday the dr. said the thrush was gone. It wasn't. He told me last night it felt like it was burning. Up until that point he had just said it hurt. They confirmed it was thrush and wrote him another prescription and he also has another mouthwash to help. He did have radiation and he only has three more treatments. He will try again for chemo on Thursday. Dr. seemed pretty sure his counts would be back up by then. So he will have to do I.V. fluids in Coshocton this weekend and Zanesville on Monday. She also said they will do a weekly check of his counts over the next 3 weeks. Weight check: He has lost another 11 pounds in the last two weeks. He has lost around 30-35 pounds total.

Last Week

Well, I will start with Bella news. They are saying her "high voltage" brain wave spikes are not seizures and we should not be concerned. We can up the dose of melatonin or try benadryl to get her to achieve a deeper sleep. This is not something we do forever, but we are trying to "change her pattern of sleep behavior". They also said they could use a prescription drug, that's also an adult high blood pressure med, that would help her sleep. I'm not sure I'm willing to go that far. I've upped the dose of melatonin and may be willing to try benadryl. Still interested to see what is said about tonsils and adenoids.

Kurt has gone downhill somewhat. He's having a hard time eating anything and has a lot of pain. He's spending a lot of time sleeping from the pain meds. His radiation dr. told him he could go to an all liquid diet if need be. He's still says he's ready for Monday's chemo. Hopefully his lab work will be ok, so he can get it and be another step closer to being done.

I will let you know how this week goes. It will be a rough one, so think of him often.

Not Much News

I know everyone has been checking and I haven't updated in a while. Not much going on. Kurt's throat sore. He's having a tough time with hamburger. Got sick on it and scratched his throat up, so now he avoiding that. Only 5 more treatments of radiation and chemo next Monday. Dr. said he might feel a little worse after he stops getting radiation, then around 7-10 days, he should start feeling better. Could take up to 6 months for food to taste normal again. She also told him some foods may never taste the same! Still waiting on results from Akron. Called and left a message yesterday, but as usual haven't heard anything! I'll let everyone know when I hear something. I would like to thank everyone who's been sending cards, especially Aunt Brenda! It's very nice getting some sunshine in the mail and not just bills!

Happy Father's Day

Kurt enjoying his two days off and getting presents from me and the kids for Father's Day. It feels like a nice, lazy Sunday before we start next week's craziness. Kurt has a full week of radiation and Carter has his three year check-up (and probably shots - Yuck!) on Tuesday. Hopefully, we will hear from Akron about our next step with Bella. Hope all Dads have a wonderful Father's Day!

EEG

Bella had her EEG today in Akron. I think I walked out more confused than ever. We first discussed her sleep. I told her she's still tired during the day and that we never got Bella's PCP to give us a reading on the sleep study. We know she has issues sleeping but nothing being done, so this dr. said she is going to get us to a sleep specialist up there.

Bella's EEG being classified as "normal" at this time. This means she is not having seizure activity.....however, her brain waves are spiking as she goes to sleep, which does not follow the typical brain wave pattern. She is going to send the EEG on to the epileptic specialist to see if he has any answers as to what may be causing this.

We also talked about her episode that landed her in ER that we were told was focal seizures. They have no idea what it was or what caused it. If it happens again, she definitely wants to get an MRI/MRA done. She said looking back on her notes, it sounded like a confusional migraine, but they are rare in kids, although they do happen. They are just not sure. At this point, we are just watching her and if it happens again, we will know what tests to ask for.

We should hear more next week on what epileptic specialists has to say about EEG and maybe even have a referral to a sleep specialist, or at least have her sleep study forwarded to one. I'm still going to have her tonsils and adenoids looked at, so I can rule that in or out. Keep you posted with any new news.

Resuming the Schedule

I figured out why Kurt having acid reflux and throwing up over the weekend. He had run out of his main anti-nausea medicine and wasn't really taking much of anything, so I put in a call to Dr. who told him what to take until he could get more meds. They are super expensive for a prescription, so they hand out sample packs. He's doing better now, but really took a toll on him, as he is very tired. He was able to get more of the medicine today, so we have it if we need it.

He was also able to resume radiation treatments. Dr. looked at him today and the thrush seems to be getting better. That was the "raw" feeling so even his throat does not feel as sore. Dr. also told him to start doing some exercise. He's lost somewhere between 25-30 pounds, and she is concerned with his lean muscle loss. He will be able to reach his goal of single digits this week. After Friday, he will only have 9 more treatments.

No Treatment

Kurt's "raw" throat is due to thrush, a yeast infection in his throat. Dry mouth, chemotherapy, and radiation can affect the immune system and lead to an increased risk of developing thrush. So they didn't do radiation today or tomorrow and he goes back on Wednesday to be re-evaluated to see if he can start back up treatments. He's disappointed, because he wants to push through and get it done, but dr. said it's better to take a small break now than a large break later. He also saw chemo dr. who said his white blood cell count back up, which is good news, and they have him scheduled for his last chemo treatment on June 28th.