Update on Aaron - down to 1K

Well after spending all summer with pretty much counts of 7-10K and working at Summer Camp, we opted to try IVIG because we want to go to Disney in December and also he needs a cavity filled so we needed to know what might work. Single dose bumped him to 169K at one week but back down the following week. We tried a double dose of IVIG and we got 123K at one week and back down again and Aaron was out of school with a 7 days headache. Then he spent a 4-5 days at Week 3 after treatment dizzy - hemo said not from treatment. But, he did not stop and currently at 1K. He feels good, just a little tired and no bleeding. On Monday, we go in for the panel of blood tests they did when he was diagnosed the first time (he was dx at age 5 and went into remission at age 11 and back again at age 16) and a bone marrow biopsy. Its hard to figure, you want answers but at the same time, maybe not unless it's something that can be fixed; which is not normally the case with these diseases they test for. Ugh. It has been a stressful couple of month. Aaron is in 11th grade and he has missed so much school. They have been wonderful, they gave him a 504 plan and the nurse is amazing and the teachers about all this. But it is still early in the year and at some point if this continues, it will be a problem. Sometimes I wish I could quit my job and stay home and keep him at homes when he is so low and have the school provide a tutor. Since he has hit bottom, I can hope and pray he will come up a little. Next step is to try prednisone and get him into the homeopath if we can please get him stable and healthy and in school. Disneyworld is looking more and more unlikely in December. I guess the last 4 years we have been promising (though we had perfectly good reasons, my mom had cancer), ughh, now a problem. I don't get much time to come to the site but I used to way back in the day before Aaron's remission. I know this is a great place to come and vent to people that understand

Peg,

I am not in any way suggesting that you follow suit, but I was in exactly the same position a few weeks ago regarding theme parks, and I let Dougie go to one in Spain when I knew his count was below 10. Sometimes its difficult to make these decisions and I am afraid I landed on the "you only live once" side.

When we tried out IVIg it also gave Dougie the headache from hell. Incidentally, why do you need a good count for a filling? - ours has never had a problem and he knows Dougie's count is always very low.

Ali

Ali - Our dentist won't see Ryan for even a routine cleaning with counts below 50,000. Maybe thats whats going on for them too.

I feel your pain Peg. My daughter was diagnosed in 2002 but sadly has never been in remission. We tried Prednisone , which made PMS seem like a casual stroll in the park. So we pretty much treated with IVIG for the past 10 years. I am now considering Promacta , because due to scar tissue on her veins just putting in the IV now usually takes an hour and causes her a lot of anxiety. We do have good results from the IVIG , but she also gets headaches for 3 to 4 days after treatment. I do wish you and youre family the best of luck.

Peg -

I'm so sorry to hear that Aaron is struggling and I hope you find something that works soon and you can still go to Disney. It's all so very frustrating. Brady had IVIG many times but it always made him sick and he'd miss a week of school recovering so we finally stopped using it. We're fortunate that he hasn't been treated in a couple of years but Rhophylac (WinRho) is what works for him. You feel terrible putting these drugs in to the kids when it makes them feel terrible - maybe homeopathy will be a good long-term solution for Aaron.

There are still a lot of fun rides and other things to do at Disney even if his count isn't really high, but I hope Aaron's gets high enough to do everything! Good luck and let us know how it goes.