Update on Caitlin, change in treatment dose

Caitlin had a great time at cheer camp! She did really well! She stayed an extra day with friends and ended up getting pretty sick overnight her last night there. They stayed at the Great Wolf Lodge. Luckily her illness was just a 24 hour thing because she was ok when she woke up this morning. (Was vomiting, fever-103, headache)

She saw the dr this morning and all is going well. Her hematologist talked with the drug company and asked for permission to reduce. Since it was going to be written as a protocol violation, she decided to go all the way back down to 1 mcg. I am in full support of that. Dr said it is better to work her way up rather than down because then we don't know what is the "least" amount she can have and still have safe counts. I was amazed at how tiny the strynge was! It has been a long time since I've seen that! Her count was 57 today after going two weeks without the drug, which is a pretty awesome count. She lost 4 pounds in a week so the dr says it probably wasn't the right dosage per her weight so they might have to increase it next week if she gains her weight back.

Going to see a plastic surgeon/hand surgeon for a consultation for the cyst on her wrist on Thursday. Hoping to get the surgery scheduled quickly so that she can heal before school starts. Sadly, there is just a little over a month left of vacation before they return to school.

Oh, and I asked about her chicken pox vaccine. They decided to draw more blood to do a titer to see if she already has the immunity and doesn't need the shot. She must have it before we can pick up her schedule for school. Her dr doesn't want to write the note exempting her from the shot until she knows how much immunity she has. The last thing we asked about was Plaquenil. Hematologist wants to wait until we get her platelet count a little more stable before we had something more, but does agree that we will need to start it sooner or later.

Yay for cheer camp and decent counts! I'm glad you got to come down on the dose too. I bet we'll be down to 1 mcg soon too. Tim has dental work next week, finally. Hopefully his counts will stay up nice and high for the dental work.

I hope his count stays high too. I thought he already had the dental procedure scheduled for last week? Did the hematologist prescribe some Amicar for him in case he does have alot of bleeding? It isn't always necessary, but it is nice to have on hand "just in case" there is more bleeding than anticipated.

Caitlin's count is dropping a little...I can tell. No petechaie yet so I know it hasn't dropped below 20. I hope next week's count proves me wrong though!

He didn't prescribe anything. Tim has another appointment this week, so hopefully he will be high. I'll talk to him about keeping the dose high enough to keep his counts up. He didn't have the work done because he has to have a root canal, so they had to reschedule. Today I had SEVEN fillings done! AND I had an old filling redone, lol. My dentist said, "I can do these fillings without numbing you if you want." I was like, Nah, feel free to numb me in to next week, thank you." I have to have a deep cleaning too, but thankfully nothing big. I have a fear of losing all my teeth because my grandpa, dad and aunt all lost ALL their teeth at a young age. Thank God I've got all mine. Well, I rant, lol...

Ouch Donna! I really need to go. One of my "must do" on the list to do for this summer and time is starting to run out! I would probably need that many and maybe more just because I haven't gone since my senior year in high school! (horrible gag reflux=fear of the dentist) I told my husband that if I finally get around to going, I get to treat myself to something big and he agreed because he has been pestering me for years!

Took Caitlin to see the hand surgeon this morning. Because she has ITP, they didn't want to do surgery right now. They felt like something needed to be done pretty quickly because it was causing some pain and some numbness. So they did an aspiration. Caitlin is not usually afraid of needles,but she lost it when they came in with their "kit"! I had to sit behind her and kind of hold her tight so that she would feel a little better with "mommy's touch". It was a quick procedure, but kind of gross. Caitlin has alot of bruising now where they did the injection and alot of petechaie all around it. I have a feeling it will look even worse later. They said to return when it comes back. I don't even think they took it all out because she still has a "lump", but maybe it is just swollen. They said that if her count is low the next time she comes in, they will schedule surgery and maybe do a platelet transfusion right before surgery because the cyst is deep and so they will have go to pretty far in and possible do a little reconstruction on her wrist since the cyst has been there a while. (I doubt that though!) She didn't have too much bleeding...I only had to change the gauze twice and she had the procedure done a little over an hour ago.