Still going strong!

Just an update on Caitlin...

She is still going strong! Forgot to give her the shot on time last week (oops, first time ever, but gave it to her one day late after talking with the study coordinator). Everything is so busy right now that it is so easy to put ITP on the back burner when things are going well!

Her count this week was 156! We are still giving her the same dose. Sometimes I think that maybe she would be maintaining counts in the safe range without Nplate at all. We did have a tiny bit of a scare a few weeks ago because her neutrophil count plummeted and her wbc was the lowest ever. For some reason, the drs are convinced that she was fighting an infection but she wasn't sick a bit before/after that day. (Maybe it's possible for our body to fight a "war" inside without us ever knowing it!) They redid her neutrophil count this week and it went up, but it's still lower than it has been. They're going to keep an eye on this but said it might remain lower until flu season is over.

Caitlin has decided she wants to try out for basketball. Her hematologist wrote at note for her PCP & school clearing her to play any sports at this time, which is a first for us to actually get it in writing! I don't know if she will make it because she is kind of short, but she is very fit so her running and passing might get her in. I am also not sure how we will manage another sport on top of everything else that we have going on, but I've got to expose her to something other than cheerleading for a bit. (Getting tired of it since we've been at it for almost 8 years now.) Hope all is well with everyone else!

Thats a brilliant result - from what I remember of Caitlin and Nplate before the rituxan stuff, her counts were nowhere near as good or stable.

Dougie is absolutely loving basketball at the moment. He has had a whole term of it, as he can't play rugby at school until his count is a lot better. But it doesn't seem to be bothering him too much. He likes it so much that he is going to two clubs to play and also managed to persuade me to take him to see a BBL game. I never thought any sport could compete with Dougie's love of football (soccer) but basketball is coming close, so I hope it works out equally well for Caitlin!

Ali

Well, alriiiiight!

Isn't 'normal' lovely?

Hey, Caitlin: There are some shorter PRO b-ball players out there, too! Size does not dictate quality--go get 'em! Ann, Caitlin's (23) Mom

Lol, Ann! Well, she got her wish and made the team! It wasnt an easy week of tryouts because I kept trying to convince her that maybe she shouldnt do it because i am seeing a huge increase in bruising. It is so hard to remind myself that even people with normal counts have bruising. I am just worried that basketball is even more dangerous than competitive cheer for her because she tells me that her head is a magnet for the ball and she keeps getting hit so comes home with a headache. My husband, on the other hand, is so excited and has been practicing with her everyday since she made the team. When I try to tell him my worries, he immediately quiets me and says she is going to be just fine and to let her enjoy another sport for a bit. I think the first game is next week already! The coach already loves her and says she is going to be great for the team because of her quickness and she is very good at defense and getting the ball away from the other players. Im so glad I have a note from the dr saying that they must report injuries to me immediately. My protective mom shield needs to come down a bit and relax!

Be careful with those balls. My daughter's head was also a magnet in high school volley ball. She ended up with two concussions and permanent neck problems from getting hit too many times. I find myself wishing I had stepped in sooner and put an end to it. Hindsight.

I'm glad she is doing so well!

Hey, Pauline,
Glad to hear that Caitlin's doing so well. I'm a worrier also - seems like many moms are!- and ITP just gives us more reasons to obsess! Just wanted to chime in and second your husband - try to relax and enjoy her games. It's all in what you're used to I guess - just reading your posts about competitive cheer makes me nervous. On the other hand, Brady plays in a couple of very competitive basketball league and I'm almost never worried. It gets more physical the older they get and he gets bumped around a lot but has always been fine. His season starts with a kickoff tournament next weekend and he's excited. Our family loves basketball - it's a great sport and such great exercise! Brady's really tall, though (he's 13 and 6 feet tall), so usually the balls don't hit him in the head!

Here's to safe, fun basketball seasons for all the kids out there!!

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

Sandi-did you know right away when they were concussions? Caitlin wants to play volleyball even more than basketball but they didnt approve it so she couldnt do the try outs. The basketball is even harder than a volleyball which is why i worry.

Beth-We love basketball here too and share season tickets with another family for our NBA team here (Go Mavs!). Caitlin is by far the shortest one on the team. I hope I will be able to enjoy her games and maybe after the first few games, i wont be as nervous anymore. Competitive cheer doesnt scare me because she was doing it way before she was diagnosed and so she knows what she is doing. This is her first time ever to actually play (she never even touched a basketball before unless it was in PE) so it is very new for her. You are right...this ITP makes us moms have to double and triple think everything!

Pauline - I hate to admit how naive I was about it. It was about 10 years ago. The first two times I didn't take her to the doctor. She just came home from school and said she got hit in the head with a ball. I didn't realize how hard that could be. The third time, I did take her to the doctor that evening, and she did have a concussion. The fourth time, the school was ready to call an ambulance because she hit the floor. At that point, I took her out of that gym class. Like I said, her neck has permanent damage and she has frequent headaches. It wasn't worth it. Hopefully, Caitlin will have better luck.

I hope Caitlin will have better luck too! I told Caitlin that she needs to keep her eyes peeled and really try to block the ball from hitting her head at all costs. It is even more important with her ITP because we never know if her count could drop due to an illness or a cold. I am just going to have to have faith in God that he will keep her safe and help me make the right decisions when I need to step in.

I can always pull her out if I really feel like this is becoming dangerous for her. I feel like I owe it to her and especially to my husband to give this a try since he has put up with competitive cheer all these years. He is loving my older daughter being on a school cheer team because it allows him to watch football while she cheers. Finally found out that the first game isn't until December so I've got a little more time to adjust to all of this!

I'm sure she'll be fine. Holli was just very unlucky.

Decided not to start a new thread. All is still going well. Cait's count was 204 this morning which surprised me because she had strep throat and was really sick last week. She's still on antibioics but will be done Wednesday. First game for her is this Thursday night and she is wishing she didnt make the team because she isnt confident in herself. Thinks she isnt good enough and still feels like she has no idea what shes supposed to do. We go back next week again just because she was over 200.

Hi Pauline and Caitlin--if you need some inspiration on what girls can do:

Basketbalancing Stresses Me Out, Man - Urlesque

8')

Thanks Ann, for that suggestion! I think Caitlin will be fine once she gets to watch one or two more games. (She was totally confused at her first game so she only got to play for a few minutes.) She doesn't really have a very good coach (sad to say) and it was obvious to the parents watching the game. Their coach just sat down and said nothing the whole game while the coach of the other team was rooting their team the entire time and giving pointers on what to do. Hopefully our next game will be a little better. (We did good, but lost by a few points. Caitlin is on B team. Our A team killed the other team's A team but they are experienced and play basketball on other rec teams.)

Caitlin has a great self-esteem when it comes to cheerleading though. They won their first jacket this past weekend at a National's competition and it was long overdue so I was so happy for them! Caitlin is still a tumbling freak and now that her numbers have been high, she is back to being a flyer and doing great! (Still absolutely no fear there!)

Still going up! This week her count was 306 so they dropped her dose down to the minimum dose. I really wish Amgen would change their protocol to where if it was above a certain number, they could skip that week. It seems silly to me to give an injection when her counts are this high. This drug is sooo different for many people and I hate that there is not a "one size fits all" for many drugs. Our coordinator was telling us that another patient was really struggling to keep his counts up, then finally shot up in the 400-500 range for about a month so they thought he was on his way to remission, but they didn't stop injecting and he dropped down to 4 last week. Then another patient has been as stable as a board from day 1 of injecting so she has never really had to increase/decrease the dosage. She stays right in the 100-150 range consistently. Don't get me wrong...I am very happy that Caitlin is getting good counts, but I am really more comfortable when they are in the 50-100 range because of all of the large platelets running through her body. (She had another headache earlier this week and I know it is directly related to higher counts.) Also, she almost looks just as bad (no bruising though) on high counts as she does on low where she is so fatigued and her skin coloring just doesn't look good so I always keep thinking she's dropped, but it's exactly the opposite! I need to remind myself though, that when she looks like this, that it is flu season and her body could just be working overtime to fight off everything around her.

Oh, and another thing that was bittersweet yesterday. Caitlin was in the middle of a blooddraw when another girl came in (she looked about 16) and she wanted to give the nurse a hug because she was completely done and didn't need to come back. When she left, I asked the nurse if the girl had cancer and she said no, that it was ITP and that she had been there for 2 years and was in remission. This girl was crying because she had become so attached to the staff there and you could tell the staff had become attached to her. It just amazes me how wonderful our nurses/drs are to our children so we need to tell them how special they are while they are treating and not just at the end when our children are done with ITP. I know I'm going to be baking a big batch of cookies or candy and then attaching a photo to give to them next week.

It's wonderful she is still up so high, from what I remember when I was on nplate this year, in Australia they do have a protocol to stop the injection that week if platelets are at a certain level. I think if it was over 200. I know what u mean, I even now at 25 still get attached to all the nurses who take my blood.