I have not talked to you guys in ages

Life has been quite the roller coaster. I apologize for not keeping in contact. I see that lots has changed with Tim, Caitlin, Dougie and Roger.

Internet works at home, but our network is not working, so we are down to only using one computer, which is in the basement. I do not come down here very often (it is the boys' domain, so you can imagine what I am talking about).
I have not had many chances to check in her while I am at work - we are short staffed, and it has been very busy.

Danica saw the hematologist in Edmonton, and it was very worth it. We did not learn a heck of a lot more, but did get some better insight. He said that sometimes ITP can predispose lupus. I hope that is not the case for Danica, but if so, I am thinking that she would definatley need her spleen if she had lupus. Again, I am so not ready to entertain that idea yet - especially since she has not hit puberty yet!!!

He said that they use Rituximab quite often, and find that there is about a 70% chance of response. He said that if she did respond, and ended up getting something like a year of good counts, then that would sure save us lots of trips to the city for IVIg. He also said that they usually give 60 grams, not 30 like Danica was getting. We just had IVIg on Wednesday, and Dr. Devaraj had actually just gotten the letter from Dr. Belletrutti that day - he increased her to 40 grams with the plan to increase to 60 on her next visit. We will also see him that day because we want to get started on the Rituximab.

We did manage to get away to Whitefish Montana last week. Stayed in a condo for a week and ate, drank, got lazy sometimes, did some hiking, and quite a bit of shopping. Great time!!! The kids and I went. We met my parents there. Kevin (hubby) stayed home and wow - I came home to a wonderful suprise -- a new kitchen floor. Our house is almost 20 years old, so it was time for a change. He put laminate in, and it looks great.

Danica was out on the boat with her brother and auntie and uncle on Monday night. Just Danica's luck - her uncle was tubing, and when he fell off, the boat jerked just as Danica was standing up, and BANG - she did a face plant right into the dash of the boat. She took out a piece of the dash with her teeth. She cut her lip quite badly, and needed 7 stitches. She chipped 6 teeth, and broke 1. One of them is one of her top front ones. She also pushed both front teeth up, but the dentist figures that they will come back on their own. He grinded down the six teeth to make them smooth again, and will fix the other one in a few weeks. Her count was 12 the next day (I had guessed that she was about 20 that night). She bleed pretty bad, but all was good once the stitching was done. Thankfully, the cut is closer to the outside edge of her lip and most of the stitches are inside. I don't think it will be too noticeable once it is healed. It sure looked horrible that night. It was really swollen for a few days, but it getting better now.

Man, just what every parent of a kid with ITP wants - a phone call at home saying, come to the hospital, Danica is bleeding. What a trooper though, she was such a brave kid.

I promise that I will try to keep up better with your kids. Good luck to you, and I hope that you have a great summer.

Michelle

Wow, what a scary ordeal and I'm so glad to hear Danica is ok!! Hope that she does get to start the Rituximab and that it does give her the much needed break from all those IVIGs!

Glad to get an update on her even though it's been a while! All of us moms of preteen girls need to update each other when they start their periods so we know what to expect! I'm still dreading that day!

Ouch!!!!

I am kind of pleased to know that it isn't just Dougie who breaks teeth though - he went to Youth Club about a year ago, and collided with the wall whilst playing five-a-side. It resulted in two broken teeth, one of his top front teeth and one at the bottom on the front. Dentist put white filling on and they look pretty normal again, but I remember feeling quite upset about it at the time. I hope Danica has recovered well by now.

Let us know how the increased IVIG goes and I hope that the Rituxan stuff happens without any drama and works brilliantly!

Ali

It must be catching.....

Dougie went swimming this afternoon, dived into the deep end, but collided with the bottom, broke his front teeth, but also managed somehow to put them through his bottom lip. I've had a bad week because my eldest son fell off his bike last weekend and ended up in hospital having his partially detached right ear sewn back on (horrible!) and plastic surgery to make up for the skin he left on the road; so another phone call telling me one of the kids was hurt today was the last thing I needed!

Anyway, the pool staff were great despite the fact that Dougie bled profusely all over their nice clean poolside and changing rooms, and they also managed to recover the bits of tooth so he's had them stuck back on. Amazing - I didn't know that dentists could do that! Dougs had a count on Thursday at 32, so those platelets must be working reasonably well.

Just to round things off nicely, Roger has also come home from camp with ringworm.

Anyway, totally stressed by a week of too many accidents and emergencies, I am now considering wrapping my kids in cotton wool and sitting them permanently in front of the nice safe x-box!!!!! Activity is over-rated!

Ali

Oh Ali!! yikes I am ready to send some of my bubble wrap your way. I'm so glad Dougie's counts are high enough that the bleeding stopped reasonably soon. You are overdue for a calm and peaceful September! Praying that all of your boys are on the mend soon
Camden's new hem/onc let him have his teeth cleaned w/counts over 20,000-first time in 1.5 years. I hope he can keep his from being broke!
Much love,
LaMonica
mom to Camden 9yrs (dx 6/09)

Wow....talk about a rough week Ali! I'll send some bubble wrap your way too LOL....

Yeah, bubble wrap should do it! That, or if my eldest son would just accept the need to wear a bike helmet.... Still, nearly losing an ear might have persuaded him on that front. His ear will never look the same again because they had to sort of rearrange it to get enough skin to cover the bits he had left on the road, but at least he still has one. He seems to be mending ok, and hopefully the hospital will take the stitches out tomorrow. Several more trips after that till he gets properly well again, so I've locked the bike in the garage until he is all done.

I don't know about in America, but there is a big public health campaign here about activity being good for your health - NOT!!!!! It is clearly harmful to the health and wellbeing of my kids anyway.

3 of them have got birthdays coming up, so we've just been discussing parties. I tried to suggest the cinema, or a meal out, but what have they come up with....... laserquest, paintball, swimming, football...... I can feel another trip to A&E coming on!

How's Devyn and Camden's counts doing anyway? Hope that they are staying well and not causing you both too much stress. Hope Camden is loving a bit more activity and that Devyn is being a normal toddler (tantrums etc, oh how glad am I that mine are a bit older!!!!). I bet he is just lovely though!

Thanks for the good wishes,

Ali

Hey Ali,

The last count we had was back in July, it was at 175,000 so we were told that he could wait until Sept to do the next...a nice break from getting bloodwork for him. Since then he has had a week or two where i feel his counts have been really low due to bruising but they have come and gone quickly ( not staying for 2 weeka at a time when he is really low) So i haven't taken him for a test. He's seems to be fluctuating up and down right now.

We have really been enjoying our summer and trying to let Devyn do all the normal little boy things(with percautions of course)....it's hard sometimes but I don't want him growing up feeling different. He is definitly your average toddler but we have lucked out with the tantrums SO FAR....and yes he is just lovely!!! He too has a birthday coming up on the 24th of Sept, he will be 3!! This is the frist year that he really knows what it is all about and he is getting so excitied.

For your sake I hope things are less eventful in the next few weeks....well at least when it comes to injuries I'm happy to hear that dispite the injuries that they are all doing well.

Take care
Deanna

Hey Ali!
Camden is set to start the 4th grade on Thursday He is bruised up, but nose bleeds are only every few weeks and his last counts have been in the 35-40k range, so no complaints! We are taking a break for a month or two from counts unless something changes :woohoo: