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,
Chrissie

Signs...

Good morning!

I hope that you all had a wonderful weekend. I had told myself that since both kids are home today I was going to not get on the blog and write anything. Nothing that I might have wanted to write couldn't wait until Wednesday after Mike's plethora of appointments. But it's 9 AM and I have already cooked 4 eggs, changed 6 DVDs, drawn 10 Sesame Street and Blues Clues characters on a dry erase board, refereed at least 3 fights and taken 2 Advil so here I am! LOL

I have to tell you, I have been thinking a lot about signs. About how there are little things to show you that everything is going to be ok. That there are things to let you know that the people you have loved and that are no longer with us are watching over us and taking care of us all the time. I believe there have been signs sent to me to let me know that all of my family members up in heaven are watching over Mike, helping me to make the right decisions for him and are guiding the Doctors to the right medications to get rid of these tumors. Like I said in another post, I am very cautiously optimistic about things. I have a fear that things aren't going the way I want them to and I am petrified about the MRI on March 9 showing us what we don't want to see but deep down I believe, and am hoping beyond hope, that everything is going to be ok.

Mike is doing ok. I wish I could say he is great but he is ok. And right now, that's good. He is cranky and irritable all too often. He gets frustrated entirely too quickly and he is still not eating as well as I would like him to. He is still not walking and is really not sleeping well at night at all. BUT, he still likes to play, he is still loving his DVDs and has a very active imagination. He loves to play on the computer and is talking up a storm. He sings songs, says the alphabet and counts to 20. He lights up every time Katie comes in the room and wants to be involved in everything that we do.

So, like I said before, today was shaping up to be one of those days. Right before I sat down here I was about to lose it... and it's only 9AM! I was aggravated at the way the morning was going. I was frustrated that I got very little sleep last night AGAIN. I was worried again about Mike's behavior, is there something really hurting him causing him to be so cranky? Is the tumor changing in a way that is unacceptable to me(notice the wording... I can't even bring myself to type it out in plain English) and causing him to be so irritable? So, I sat down here and signed into my G-mail account. I then signed into Blogger and saw that I had a comment to moderate.

I truly believe that comment was another sign. Not from an old friend or a family member or from someone I know in real life but from someone I have never met. I have never met her but I have been so touched by this person and her family. A sign in the form of a comment. It's right there, on my last post, go read it for yourself if you want. It's a comment from Jessica Kate, Tuesday's mom. She was responding to a comment I left on her blog and when she was leaving hers she noticed her verification word (you know, that word you have to type when you try to leave a comment) to leave a comment on my blog. Jessica Kate's verification word for that comment she left me was CURE. If that's not a sign from a very special little girl up in heaven, I don't know what is.

So, for all of you, please keep praying for Miss Tuesday and her family and for all of the children that have been taken away from us by this monster we call cancer and their families. Please keep praying for the rest of our family that we are making the right decisions and doing all that we can do to make sure Mikey-Mike lives a long, happy and healthy life!! And, of course, please keep praying and keep believing that Mikey-Mike is going to be ok.

Thank you all so much! I hope you all have a wonderful day... and that mine just gets better from here! LOL

Love,
Chrissie

PT and OT and our next 2 crazy weeks!

Hi everyone,

I have to tell you, I am finding out that more and more people are reading my blog and can't believe that there are over 300 people that have joined Mikey's Facebook group! I am so touched by the tremendous amount of support that we have received from everyone. Thank you all so much and for those that haven't joined yet, please go to the group and send a request to join! Once you are on there you will be able to get the 'Reader's Digest version' of everything that has happened up until now and where you can keep updated on what is coming up for Mike in the future. One of the things you will find is that on February 18th we are having a Virtual Prayer Day For Mikey-Mike!! Wednesday, Feb. 18th is the first day of Mike's 2nd round of chemo. We are praying that this chemo kills the tumor cells that are all over his spine and brain and that he continues to tolerate it as well as he has been tolerating it! Pray from your office, home or wherever you are, pray in your PJs, in your worksuits or in your workout gear!! Just please, join us in praying for Mike's full recovery and that this drug does it's job!

Now, onto Mikey-Mike! On Thursday morning I took Mike into MSKCC for his PT and an OT appointmenta. I am now fully aware that we need to schedule his OT appointment BEFORE his PT appointment. The poor little man was in so much pain from PT and was so wiped out that it broke my heart. All he wanted to do during the OT appointment was hang onto me and be held. I do have to say though, the therapists were phenomenal with him and were so patient and supportive!! That was a big help in all of that. The PT said that the VinCristine caused the foot drop that he has and that foot drop caused his ankles to be stiff which caused the pain when he was walking which caused him not to want to walk which caused the muscles to stiffen so much which causes the pain when anyone tries to get him to stand. So, all in all, I think it's going to be a long and painful journey for my little man to get walking again. He really liked bouncing on the exercise ball until M (the therapist) tilted the ball to move him to a standing position. I now have to go online to find an exercise ball so I can work with him at home too. I just feel horrible because he was in so much pain. I know it needs to be done because he needs to walk but I can't stand when he cries out the way he does it. I have exercises to do with him at home too. My mom had wanted me to show her how to do the leg moves but I don't want anyone else to have to do it because they hurt and it would be horrible if he associated anyone else with the pain. :(

So, we go back to MSKCC on Wed, 2/18. Mike has an appointment with the oncologists to have an exam and to get the Temodar (chemo) that we have to start at home that night. Then he has PT and OT again. On 2/24 we go back AGAIN to get blood work done, have a surgery follow-up, PT, OT AND Mike has to see the Ophthalmologist. That's going to be one very long day. 2/26 is just PT and OT. Looks like we are back to being at MSKCC 2 or 3 times a week! And, PLEASE don't forget to say some big time prayers on 2/18 that the chemo we are starting round 2 of is doing its job and on 3/9 for Mike's MRI!

I hope you and your families are all doing well! We continue to pray for all of you that visit us here to check in on Mike and our family. Please keep Mike in your prayers!!

Love,
Chrissie