Wednesday, March 25, 2009

Our latest PDH & Ophthalmology visits... & Katie's report card!!

Hi everyone...

So, after our eventful weekend we had another appointment on Tuesday in the PDH, PT & OT appointments AND the Ophthalmology visit.

As soon as we got to MSKCC we had Mike's blood drawn. Getting it done first thing in the AM means no waiting in the IV/Blood drawing rooms and the pedi lab doesn't get backed up so the results come back rather quickly. The poor kid HATES it. We have a system though... whoever comes in w/ me (usually my Dad) and I will have a job... one of us stays w/ Mike and the other checks him into the IV room. The girls in the IV room know to talk to the lady that does the fingerstick and have her get everything ready so all we have to do is walk Mike in, sit in the chair w/ him and hold his finger out. He SCREAMS the entire time though. Accessing is worse b/c you really have to hold him still for that needle. We have found the way that works best to hold him down for both. I know it doesn't hurt him (the fingerstick is a pinch and he has Emla cream on when we access him) but it is still hard to hold him down while they get the blood they need.

Then, as soon as we were done that, Mike had PT & OT. They are hard on him. His muscles are so weak it hurts and he is so scared. It's like he has lost his center of balance and is so afraid of standing. He cries when they take him to the room to 'play' and he cries almost the whole time in there. I hate sitting there in the waiting room b/c you just hear him crying and yelling for me... It is so hard when you know he needs the therapy and you can't be there to help him. :( They said that he did do some weight bearing so that's a plus! His upper body strength has improved also. The tremors in his hands have gotten better, they are still there but not as often. The not walking really has me concerned. Is it the effects of the chemo? Is it the tumors? We have no idea, and probably will have no idea so I'm doing a lot of hoping & praying that he starts to gain more strength in his legs and starts to walk again.

Anyway, once the therapy sessions were over we went back up to the PDH to see the Drs. We were brought back quickly b/c it was 11 and we had a 12 o'clock appt w/ Ophthalmology. His bloodwork came back great but it turns out he had some fat in the stool that they cultured. They said they were glad we have an appt on Thursday to see a GI doctor at NY Presbyterian/Cornell because that was a possible malabsorption issue and that I shouldn't be surprised if they wanted to re-visit the talk of a g-tube. Needless to say, I am really anxious about the appointment tomorrow. I will update on that when we get home or on Friday morning.

After seeing the Dr in the PDH it was time to go to Ophthalmology. Well, this was the BEST appointment of the day!! :) The Dr didn't see any optical nerve swelling anymore and he said the muscles looked great and are working the way they are supposed to. We don't have to go back to him for 6 months!! :)

It was report card day at Katie's school yesterday too!! I was going to go at night but as Matt, Mike & I headed home I decided to stop and get Katie's report card. Her teacher said wonderful things about her. She told me that she really has adjusted so well and is friendly with everyone! She does excellent work and her grades were excellent!! :) I am so proud of her doing so well through all of this. And, to top off the good news about Katie... her top left tooth fell out!! :) She was THRILLED!! It was making her crazy but she was too chicken to pull it out herself! LOL

And, onto other news... I got a call from Dana Farber Cancer Center. I don't know if you remember or even if I posted it here but I sent Mike's pathology and clinical papers to Dana Farber for a 2nd opinion on both the pathology diagnosis and treatment/clinical issues. They said that based on what they have done so far, they find the same as MSKCC... we are dealing with an unclassifiable lepto-meningial (spine) tumor. The Dr I spoke to was very nice and very willing to talk to me. I gave them permission to talk to the hospital in Florida and get any and all tissue that they have and that I would sign whatever was needed for that so that between DF & MSKCC all of the tissue taken in the 2 biopsies done in All Children's would be up here. She said that they would continue to work on the slides that they have not stained so far and will call me in the next week or so with a final answer. The Dr I spoke to said that at this point she doesn't think that they are going to identify this tumor and that it would end up being officially unclassifiable. I am pretty upset about it. Don't get me wrong, I knew sending it to them would most probably we would most probably get this answer but I hoped & I prayed that they would see something that MSKCC, All Children's and Duke didn't. I have spoken to many people about different places to send tissue and summaries to and I have other places in mind but I am going to wait for the offical word from DF when they are totally done with looking at everything.

Well, that's it from this end until after the GI appointment! I hope you are all doing well... Please keep the good thoughts and prayers coming!!