Wednesday, February 18, 2009

Round 2, Day one... a good visit at Sloan today!

Hi Everyone!! :)

Well, Mike had his first full on conversation with the oncologist, Dr. D today!! It was hysterical... Mike was telling him all about his DVD player and the guys on Sesame Street. It was so nice that he was talking to him and not screaming at him but at the same time I felt that pang of, my son is actually comfortable talking to an oncologist and being at a cancer hospital. When did all of this become routine?

Anyhow, onto the good part of the day! I need a happy post!! LOL Since Katie is off from school this week she came with us to MSKCC today. She loves coming in with us, it makes her feel like she is as big a part of this as she can be. It is great for her to come and see the kids playing and to be involved as much as possible. Not to mention that having her there makes Mike all that much happier! She really is his best medicine!! :) So, we got there early today to get all of the bloodwork done. It only took about an hour for all of the tests to come back. His liver function tests were great and his counts were phenomenal!! His WBC was 10.5, Platelets were 253, HGB was 12.9 and his ANCs were 6.4. WHOOHOO!! :) He was weighed and was the same weight as last week which I am thrilled about and he grew 1/2 an inch as well!! :) I raised my concerns to the Dr about how he is feeling so great could this stuff really be working and he said that they have seen great results with the Temodar so that my cautious optimism is definitely a good thing.

From that Neuro-Onc appointment we went to PT and OT. My dad made Katie & me leave the waiting room because while we all know he will do better if I am not there, we all also know that I HATE listening to him cry, especially knowing he's hurting, and that I would want to go into him and help him. So, Katie & I went to the cafeteria for a little while ( I think I could only bring myself to stay for about 20 minutes) and then we went back to the PT/OT room. I went in to talk to the therapists after the PT appt and they gave me some more exercises to do with Mike. They all feel that his lower back is as much of an issue as his legs might be so I have a lot of work to do with him at home. :( OT went well!! He really seems to like OT. It's a lot of playing and doing things that he likes to do but he is so tired and sore from PT that he isn't as good for it as he could be. So, we have all agreed that once the schedule opens up for the next round of appts I am going to make the OT appt for the time slot before PT so that he is better for OT.

Then, we had to pick up the chemo. Now, all those of you who know me know that I HATE waiting! LOL I am just not an overly patient person but this has made me try harder to take things as they come. Today though, I got aggravated. The neuro-onc team was supposed to call the pharmacy (it's a kids pharmacy that they send all of their peds patients to all the time and they will compound the chemo drugs, unlike most pharmacies out there!) on Monday to have them make sure they had the Temodar that Mike needed in stock for today. I don't know whether they forgot to call or that the pharmacy didn't order it if they did call but either way, they didn't have the chemo meds there to compound today. AARRGGHH!! I hadn't known this so when I got out of the hospital with Mike at 12:30 my dad was able to pull up across the street (I know, we must play the lotto, a legal spot in the middle of Manhattan just waiting for us when we needed it!! LOL) and I ran in to pick up the meds. Now, if someone had called me about this or if someone had called MSKCC and let me know I would have been more ok with this but the fact that noone called anyone I was annoyed. They weren't sure what time their delivery was coming in and I wasn't about to keep Mike and Katie waiting in the car for an unknown amount of time. I was fully prepared to drive back into Manhattan tonight (and God bless Dad, because he was prepared to do it too so I didn't have to!) but then we remembered that my sis, E, works in the city!! LOL So, E to the rescue for her favorite nephew!! :) LOL E is going to pick up the chemo and bring it to Grandma's so we can start tonight!

So, everyone, keep those prayers coming!! Pray that the chemo is killing the tumors, pray that Mike continues to tolerate the chemo so well, pray that I have the strength (emotional/mental not physical) to do the exercises with him that he needs to do even when he is upset and crying, pray for our family that we continue to do what we need to do and make the right decisions for Mike and then again, because we can't get enough prayers for this, please pray that the chemo is working!!

Love to you all,


Lindsay said...

Great News!!!! My prayers are still with you.

Anonymous said...

I'm glad you have some good news. I am praying for you and your family! Take care of yourself too, even though I know it's hard to do. Welcome to SITS :)

Brenda Jean said...

I'm new to your blog-- I wanted to welcome you to SITS. I will certainly keep Mike and all you in my prayers. I can't imagine how hard it is for you to see him in pain. I think it's neat that he is talking to his doctor and that the news was good!