Update-Caitlin

Caitlin's count was at 132 today! We were kind of expecting it to be higher after what happened a few weeks ago, but this is good...we'll take it! Especially since we are now allowed to inject at home! I had to show the nurse this morning that I still remembered how to mix the drug and I also had to give Caitlin the shot. Caitlin said I do it better than the nurse, lol! (I won't tell them she said that!) It hurt the last two times she got the injection and Caitlin said she didn't even feel it when I gave it to her. Hated giving it in front of the nurse though, but glad to know that I still remembered everything without even looking at the directions. Did it so much that I don't think I'll forget for a while!

I told the nurse about Caitlin's pain this week and she went to talk to the dr. The doctor is ready for us to see the rheumatologist again, but I told her we already have an appointment on the 15th. So we will go to that appointment first, and then go see the hematologist after that to get a count and do her injection at the clinic and see if I can bring home the next few weeks worth of injections. Caitlin truly doesn't feel that well this time around (looks fine to me though) on Nplate so we will probably try to get through June on the shot and maybe try for the splenectomy in July or mid August. (She told my mom about how she hasn't felt right since she started the Rituximab and then getting back on Nplate has made her feel different.) Of course, she didn't communicate that with me and when I asked her about it, she said she is fine, but her stomach and head hurt alot and doesn't want to take Tylenol because it doesn't do anything for her. (She told the nurse this today.) They don't know what to do so they just nod their head and tell me to bring her in if the pain gets real bad. I try not to "take pity" for every little pain she has because then she might grow up to become a hypochondriac, if she hasn't already!

I noticed that sometimes when Tim is going into a remission he starts to feel crappy and cranky too. Glad to see the high counts. Why are they doing a splenectomy, it seems like she's going better. Just wondering (have I ever mentioned I'm anti-splenectom, lol).

I understand why you are anti-splenectomy. I have my own doubts about it, but I really need to think more "long-term" for her. Caitlin wants to cheer through high school and college and I don't want to keep her on treatments that long. Her hematologist also agrees (as well as a whole panel of ITP experts) that she needs a splenectomy.

However, I was just reading Jaxen's Caringbridge site. It reminds me how vunerable people can be without a splenectomy. That part scares me. But I also have to remember that there are thousands of people out there spleenless and the majority of them are fine. (I have two cousins who are spleenless due to an accident.) I will wait to see what the rheumatologist says next month before making my final decision.

I completely get what you're saying. Brady is very involved in sports also. His main love is basketball, which he plays at counts down to about 30k but which is getting much more physical. Anyway - we have also thought about splenectomy several times - even met with two different surgeons, but haven't yet pulled the trigger. As a parent of a child who has many active years ahead of him, I understand the appeal of the possibiity of a successful splenectomy. Yes - it may not work. But if it does, your active child gets to enjoy normal activity levels, without blood tests, treatments, etc. Everyone has to assess the risk for themselves, but wanted you to know that I completely get why it may be worth it to you and Caitlin to take that risk. I think we'll end up with the same decision in the near future.

I hope you have continued good luck with NPlate and hope you get satisfactory information from the rheumatologist.

Beth - mom to Brady (age 13, diagnosed 1/18/02)

I do understand about wanting it. I read about Jaxen too. Those are the two reason's I haven't allowed it. The risk and the low rate of success. Good luck with your decision.

Beth-I might end up backing out after I meet the surgeon too! Such a scary and permanent decision to make! I just have to have faith in God that it will work and realize that there are other options if it doesn't work. Right now, just to give her body at least a few months or even a year or years of remission right now would do it for me.

Donna-yes, while there is risk...there are meds to fix it if we recognize the dangers quick enough. The splenectomy success rate is really not that low. It still stands at 70-80%, but we hear more about failed splenectomies on here because they continue to get support on here. Many of them still don't regret their decision and that is the way I feel. If we don't try it, we won't know the outcome. The ones who have had a successful splenectomy are long gone and enjoying their lives, for the most part! The same goes for those who have acute ITP. Our hematologist told us that the splenectomy rate for even refractory patients is at about 70%. The only data they don't have is how long it works. (I'm sure those numbers are based at the 6-month or year mark post-splenectomy.) You have a failed splenectomy within your own family so I understand the need to be more cautious and keep Tim from going down that same route.

Always the devil's advocate, but people who lose their spleens in accidents don't necessarily have to take immune suppressants for autoimmune issues. They are in a better position to avoid more immunosuppression.

I hope Caitlin's Rheumatoloist appointment goes well. Let me know!

What happened to Jaxen? How can I get to the page?

Sandi...im going to assume you know his last name but if you dont, email me.here is how to get to any of the caringbridge sites: www.caringbridge.org/visit/firstnamelastname . I will definitely update after her rheumatology appt! I hope all goes well too!

I found it on the old discussion board. Poor Jaxen!

Thanks, Pauline