Tuesday, December 30, 2008

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,