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.

Sore

Kurt is very sore today. He has been really tired all week and hasn't gotten much better from chemo. He never got throw-up sick, just really tired and has major heartburn/acid reflux. He said his throat has gotten really sore the last couple of days. He describes it as "raw". He only has 12 more radiation treatments and 1 more chemo day. We are both wishing it was over. I fear the next three weeks will not be as "easy" as the first five (not that any of this could be described as easy!). This last chemo treatment really knocked him down and he just can't regain his strength. Keep him in your thoughts.

Tonsils & Adenoids

Yesterday, I took Carter to see his ENT in Cols. for a follow-up from his thyroglossal duct cyst removal. Dr. Elmaraghy said he looks great, the incision looks great. His rate of reoccurence has dropped majorly, since we made it through these first 6 weeks! Very good news. I also asked him about Carter's tonsils and adenoids. You can hear him breathing all the time, he snores, mouth always open. Dr. said he remembers seeing Carter's scan and that his adenoids were big. SO....he is scheduled for adenotonsillectomy on July 22nd.

Also, I asked him about Bella. I have been thinking it was her tonsils and adenoids from the beginning. Her pediatrician said her tonsils were enlarged, but she wanted a sleep study. So we went along with it. The melatonin makes her fall asleep fast at night, but it is not improving her quality of sleep. I don't think we are getting anywhere that way. I told Dr. Elmaraghy about her sleep study, that it does not show apnea but a decrease in oxygen called hypopnea, her snoring, mouth open, restless sleep, lack of quality sleep. SO.... she is also tentatively scheduled on July 22nd for adenotonsillectomy. She has an appt. with Dr. on July 10th and he will determine if she needs surgery. He said it's easier to take her off surgery rotation then to put her on. If she needs surgery, they will be done same day, back-to-back and put on same floor.

I do hope they both get surgery and they both start to breathe and sleep better. I'm hopeful from all my research that this could really help Bella. We are also still scheduled for an EEG on June 17th in Akron. If that comes back all clear, we should be good to go.

It seems like a lot, but I'm also hoping that getting them done together will take some stress off Kurt and I. They can heal together and its one night in the hospital for us, rather than splitting it into two different days. Never a dull moment around here!!!

Birthday

and to Brice, too. Happy 8th birthday buddy!

Chemo Day #2

Well, we survived the second chemo day. His levels were up enough that he was able to go ahead with treatment. If his levels had been where they were last week, they said they would have sent us home. They don't want you too weak to get it, because its important to keep on the schedule as much as possible. As much as this drug kills the cancer, it also wipes out your immune system and attacks your white blood cells. There isn't anything we can do to boost his white blood cell count, but they may have to give him some sort of shot if his levels fall too far.

They did give him Kytril drip, and that really helped. We were also told by a nurse to keep hydrated or that could make him feel really sick. The amazing thing about this chemo drug is that it really saps all the liquid out of your body. Last time Kurt came home, went right to bed, and slept a long time. By the time he got up, he was already getting dehydrated and nauseous from not having the right anti-nausea medicine. This time we had a plan. He came home, drank an ensure, napped for about an hour and a half, then got up and started drinking. He feels a little queasy, but nothing like the first time around. We are making sure he stays full of fluids right from the beginning. We learn as we go! He also asked for some noodles, which is amazing, because he didn't eat for four days last time. This is going much smoother so far - and I hope it continues. He will get another round of radiation, I.V. fluids, and a Kytril drip tomorrow. Will post any new developments!

Half Way There

Well, we officially start week 5 tomorrow. We are halfway there. Chemo and radiation tomorrow. Hopefully, Kytril drip will help and he will not be as sick. I'll try to keep everyone posted on his progress. Also Carter goes back to Columbus on Wednesday for a 6 week check-up with Dr. Elmaraghy. Doesn't seem like that much time has passed.

For those who don't know, two months ago Kurt's brother Kyle got married. We finally got to see some of the wedding pictures. Somehow, we never ended up with a picture of all of us, but I thought I would post a couple of cute ones we did get!!

Carter Man

Carter had his three year pictures taken. These are probably the best I've ever seen of him. He actually smiled at the camera - it was a miracle!!

Bald Neck!?!

Kurt is losing his hair at the back of his neck. It is from the radiation, because dr. said he would lose his hair where they are radiating at, just like his goatee. The hair on top of his head is fine (well as fine as it ever was - lol). The chemo could make his hair thinner overall, but we haven't seen any effects of that yet. He didn't have to have any treatments yesterday, because of the holiday, but has radiation the rest of the week. He has been using a special mouthwash more, because he has developed some sores in his mouth. He also has a really hard time sneezing and yawning. Anything that stretches those muscles and skin in his throat makes it hurt. He says when he sneezes, it feels like he is ripping his throat out. Nurse told him not to get sick or he would be in a world of hurt! I'm glad Bella out of school and away from all the germs there.