A milestone of sorts... week 10

Hi everyone,

Well, they say that when you or someone you love is going through long term health treatments, you start to take each day as it comes. You embrace every small milestone and look for the light at the end of the tunnel.

Today, I feel like we hit our first milestone. Mike received the last chemo treatment of the induction phase. Now, I can't say that the induction phase was without issues, or that he is feeling great through it all, but we did it. It was a very long 10 week period. I have never felt so worried, sick & crazed for so long. I know we couldn't have done it without our family and friends. Everyone has been so wonderful to us!

So, now I am going to back track. If you read the last post about Christmas Day, you will know that Mike had a tough time. He was having balance issues, he couldn't walk all that steadily, he wouldn't bend down to pick something up and he couldn't get up from sitting or kneeling on the floor. Christmas Day was the worst, Friday was a tiny bit better, Saturday was bad again and Sunday was a tiny bit better... by yesterday he was a little better and today he was better. He still won't bend down and get something and he still won't get up from sitting or kneeling on the floor but his walking is better. It is amazing that even at 3 he knows his limitations and how doing certain things make him feel uncomfortable so he won't do them.

So, of course, since he was better this morning it was chemo day today. The NP came into the playroom to observe Mike because, in our conversation on Friday morning, we had discussed and decided that it would be easier for her to see him walk in the playroom than in the office when they examine him. Honestly, I don't know how they examine him anyway b/c he is such a nightmare in the exam room. He clings to me with a grip that many adults don't have and is just so miserable that he won't get down to walk in there! So, anyway, after the NP & I talked about everything, she observed his walking and playing. She got the Dr and when he came in we discussed my concerns and what was going on and he was able to see Mike and watch him walk. Basically, the upshot is that they feel that everything going on, from the eye turning in to the droopy eyelids to the walking and off balance that is going on, is possibly related to the VinCristine chemo drug. He stated that the Dr in charge of Mike's case, Dr. D, really wanted to get the last dose of the VinCristine into him. I kind of assumed that he was going to say that so I was prepared for it. He did cover his bases though, and tell me that while this is all possibly related to the VinC it could also be related to tumor change. He said that if it is related to the VinC they could change the dose or change the meds all together. I asked if all of this would go away when he is done with the VinC though and the Dr said yes, most likely it will. So then I told him that at this point, if the MRI shows on 1/13 that these 2 meds he is on is getting rid of the tumor I will pick him up and carry him anywhere he wants to go and pick up anything he asks for on the floor so that he doesn't have to bend and get it for the next 13 months if it means that the tumor will be gone with this medication. I hate to see him uncomfortable and not as active as he should be but I want this tumor gone and if this is the medication to get rid of it, then we will all do what we have to do to get rid of it!

Now, onto the rest of today... His counts were ok, well, his HGB was bad but the rest of the counts were ok. His WBCs were at 3.8, ANCs were 1.8, Platelets were 286 and his HGB was 8.2... soooooo back to Sloan we go on Friday! If his HGB falls to 8.0 he will need a transfusion on Friday when we go. :( They are expecting it to fall so they did a type and cross today so that we don't have to wait for it on Friday. I called the blood bank (if anyone wants the number and info to go donate blood for Mike let me know... I will send you everything you need to go do it! !) and they said that we had a lot of people donate to Mike and there is blood that matches ready for him!! So a HUGE THANK YOU to all of you that went to donate already!

Well, he is laying on the couch asking me to sit with him so I am going to sign off now.

I hope you are all well. Thank you again for the prayers and good thoughts... please keep them coming!

Happy New Year! I hope you all have a very Happy & Healthy 2009!!

Love to you all,

~~Chrissie

Christmas Day 2008

Hi everyone!

Merry Christmas! Happy Holidays! I hope that your Christmas was wonderful!

Mike and Katie actually slept in until 7 AM!! I couldn't believe it! They both loved their gifts! Katie's big gift was a Nintendo DS with a couple of games and Mike's big gift was a tricycle and a V-tech laptop of his very own! lol Of course the biggest gift of all for both of them was Daddy under the tree but they very quickly went to their toys after big hugs for him!

Unfortunately, Mike was feeling really bad on Christmas morning, I felt horrible for him. Honestly, I thought I was going to have to bring him to urgent care at Sloan yesterday. :( I can't wait until this induction phase is over so they can change one of the drugs. The side effects from it really kicked in this week. They have been coming slowly for a few weeks now, the speech, tremors and stuff but this week they all hit at once and they all hit on Christmas morning. :(

He got sick on me under the tree as he was opening his gifts but if that was the only thing that happened I wouldn't have been as worried or upset. He seemed so weak sometimes that he needed to hold onto something to stand up when he was sitting down, kneeling or playing on the the floor and the tremors in both his hands are coming way more frequently now. He was very lethargic, cranky and clingy all morning. He would play for a few minutes then walk (he was looking like he was having a hard time balancing himself as well) over to me and just have me pick him up and curl up on me crying because he didn't feel good. I swear, this chemo better be getting rid of these tumors.

After he threw up and took a nap he seemed a little better though. He ate and played. I got some cute pictures of him and Katie playing on his new 'piano' and singing in to the microphone while my sister M was playing Guitar Hero! LOL It was adorable! He really got into it, dancing and shaking his bootie. I felt so much better that he was acting better last night. He did ask to go to bed at 7:45 though. The poor guy was so exhausted after playing for only a little over an hour. He had a halfway decent night, he was only up 3 times and none of those times was for too long. He is still asleep so I am going to play it by ear this morning whether or not to bring him in to Sloan for bloodwork. Either way we go back on Tuesday for chemo.

On a side note, my girlfriend E in Florida sent up some gifts for us. It was so sweet of her to do that! She and her family are wonderful and we miss them so much! But, I digress, I wanted to tell you about one of the gifts. It was a book. The book is called "Henry and the White Wolf". It's about Henry the Hedgehog who is very sick. When his mom finds him laying in the woods she asks the Wise Owl what to do. He directs her to the wolf's den to see the white wolf. They are very afraid b/c the wolf's den is a scary place but they go anyway to try to help Henry to get well. The white wolf commends Henry for coming to her den even though he was very scared. She told him that he must be a very brave hedgehog and gives him a shiny black stone to hold when he is afraid and that stone will remind him of how brave he was to come into her den. She says that being brave and strong will help him to get better. The white wolf makes a potion for Henry to drink. She warns him that he will probably feel sick and his quills and fur will probably fall out but drinking this potion was the only thing that could make him better. Henry drank the potion and though it was disgusting but he held the stone and kept drinking. They had to stay near the wolf's den instead of going home and the wolf brought this potion to the hedgehog every day. Henry held that stone every time he had to drink it. He felt yucky and his quills and fur did fall out but after a while the wolf was able to send Henry and his mom home. Henry was able to go back to school and play with his friends and feel all better. The white wolf came to him one day when he was at home and told him how brave he was and that she was watching him for a few days and how he was then all better. I cried right there under the tree reading it. (Those of you that know me, know how little it took me to cry before... not forget about it! I cry at the drop of a hat!) What a wonderful book to try to help kids understand about chemo and how brave and strong they are for going through all of this. The book came with a shiny black stone and that stone is now in my diaper bag and will come with us everywhere we go... especially to the wolf's den to see the white wolf that will make Mike all better.

Anyway, I am off to try to get another few minutes of sleep before the kiddies wake up. I am hoping and praying that Mike is feeling better today and that we can wait until Tuesday, when we are scheduled for chemo, to go to Sloan! We are heading to my dad's today for Christmas with them... it should be a lot of fun! :)

I hope that all is well with you and that you all had a wonderful, blessed Christmas! Please keep those prayers and good thoughts coming!

Love to you all,

~~Chrissie

The Christmas Party at Sloan on the news... Katie was on TV! LOL

Hi everyone!
On Tuesday while we were at Chemo Sloan had their annual Christmas party. Here is the clip from Fox News (Channel 5). My dad, Katie and my BFF Col made it on. (Katie is sitting on Col's lap in a green sweater w/ a mask on her face b/c she has/had a cold) It was really a nice party! Santa was there and so were the FAO Schwartz Toy Soldiers! :) The people that work there are amazing and really did such a great job. It was so wonderful to see all of the kids so happy! I wish Mike was there when the carolers were there but he was getting his port accessed. And of course, he fell asleep just after he sat on Santa's lap! I couldn't believe he actually sat there! Since you can't bring personal cameras in I am going to have to wait until next week to share the pictures of the kids that the photographers got but I will send them out when I get them!

Anyway, here is the story from the news....(Or you can just click the title of the blog and it will take you right to the FoxNY website to the story! :) )
http://www.myfoxny.com/myfox/pages/Home/Detail;jsessionid=49CF92A59124FF9796A32733BEC95D41?contentId=8135758&version=1&locale=EN-US&layoutCode=VSTY&pageId=1.1.1&sflg=1

Have a Very Merry Christmas!

Love to all,

~~Chrissie