Friday, January 2, 2009

The love of family and friends comes in all forms... one form is that of a little pink tag...

Hi everyone!

Well, Mike did indeed need a transfusion today. We got his numbers back and his WBC was 3, platelets were 248, ANCs were 1.2 (ugh!) and his hgb was 8.1. Now, Mary (our favorite NP ever! LOL) said that they usually send kids home at that level but she didn't like Mike's coloring so she wanted to make a clinical decision on whether or not to transfuse him. So she looked him over, took his temp (which was normal), listened to his chest (which was clear) and then listened to his heart. She thought his heart rate was a little fast. Then she took his BP and it was a little too low for her comfort level. It was 80/52. She said that between his pale color, fast heart rate and low blood pressure she felt that even though his hgb was not below 8.0 he needed a transfusion. So, off to the bed area we went.

Our nurse accessed him and we waited for the blood. I gave him the Vistaril (an antihistamine to prevent an allergic reaction) and Tylenol (to prevent a transfusion induced fever) and we waited for the blood. It only took 1 1/2 hours to come up this time! (Much better than the 3 hours that we waited for the first transfusion!) The Dr came in just before the blood came up and told me that he wanted to see Mike walk. Since Mike's balance and walking have become an issue lately I was glad he wanted to do this, however, since Mike was falling asleep it really wasn't the right time. So Dr. G asked me to get him when the transfusion was done and he would watch Mike walk. I did that and Dr. G noticed the drop foot and balance issues right away. He seemed to think that the VinCristine was causing these issues so you can only imagine how glad I am that Mike isn't getting that drug again until our next chemo day on 12/21! It seems like every side effect that can come from that drug is hitting Mike. Mary said today, even the side effects that affect the 'less than 1% of patients seem to be coming out in Mike'. It is crazy. I was honestly, and as odd as I am sure this sounds, glad that the balance issues came back. At least we can lean more towards a reaction to the meds than the tumor growing. I will be honest, I said it last week to Dr. B, today to Mary and Dr. G and I'll say it again now... if the drugs are doing all of this but are killing the tumor cells I will pick him up and walk him wherever he wants to go for the next year and change if it means getting rid of these tumors. And so, now we wait until 1/13 to see what is going on.

Anyway, back to the transfusion...It took about 2 hours to complete the transfusion. He slept through most of it since it was not only naptime but because they gave him a nice size dose of an antihistamine! He seemed like he was feeling ok when he woke up, he played in the playroom with my dad for a few minutes, the Dr came in and observed him and then we headed home. Mike is acting so much better tonight than he has acted in weeks. He wants to play , he wants to talk and laugh, he is so much more engaging tonight. He just seems so much livelier. It's amazing what the transfusion does. Even though he is having a hard time getting around he is trying, and laughing and playing and yelling at his sister. lol It makes me feel so much better to see him feeling so much better.

I want to go back to the blood for a minute. There is something I didn't say before because I really want to talk about it. When the bag of blood came up, it had a pink tag on it. It was our first pink tag. That pink tag let us know that the blood was there because of someone that took the time to go in and donate blood for Mike. It was a pink tag of support. And while the blood that he got was only from one person out of 26 that donated for Mike, the 25 other people were there on that tag too. They were all there on that one pink tag that said Direct Blood Donation Intended Patient: Michael W...... . I think I looked at that tag every few minutes during the 2 hours it took to transfuse Mike. Here is a picture of that tag. I had to take it, it meant so much to me to see it there.

The fact that we don't know who the blood is from is both wonderful and frustrating. It's wonderful because that means that so many people can go in and donate and be a part of our family forever, either because Mike got their blood or because they just went in to donate in his name as a way to support us in all of this. All of you that have donated for Mike so far, those of you who will donate for Mike in the future, those of you who will go back again and again to donate blood for Mike and those of you who will go in and donate blood even after Mike gets better because some other child (or adult) might need that blood, have a special place in my heart. I will never forget what you have done and are doing to help us and how you have supported us. On the other hand, it is frustrating to not know who it is from because I just want to hug that person. To say thank you for helping my little boy in a way that I can't because of that stupid antibody M. To let them know how much I appreciate that Mike is getting blood to help him feel better from someone that knows, cares and supports him and/or someone in our family. Honestly, as wonderful and frustrating as it is, it just means the world to me to know that so many people that know us or know someone in our family or know one of our friends went to Sloan to donate blood for Mike. I know Mike only received the blood from one person today, and I know that he will only receive the blood from one person every time he needs a transfusion but so many other families will have someone they love feeling better because of the people that came in to donate for Mike. The support we are getting from all of you when you go to donate blood is being passed on to other families. So you are not only donating for Mike but in honor of Mike. And that is an amazing thing.

I don't really think that I have the words to express how much it means to me, and honestly, I am so exhausted I can't go on much longer. So, for now I will just say thank you. Thank you to all of you who ask about Mike, who call and/or text, who send e-mails and cards, who want to come visit but can't because of distance or his counts not allowing it, who do come visit when they can and his counts permit it and to those who donate blood for him.

The kids are asleep and it has been a long day so I am signing off. Please keep those prayers coming. Pray for Mike to keep his strength while he is dealing with and fighting off these side effects that are coming one right after the other, pray for wonderful scan results on Jan. 13th, that the chemo is getting rid of these tumors and that my little boy will have a long and happy life. We appreciate the prayers and will continue to keep all of you in our prayers as well.

I hope that you are all doing well! Have a wonderful weekend!

Love to you all,


DysFUNctional Mom said...

That is wonderful that all those people donated for Mike. He is so loved!

Dolores (DJ) said...

Continued prayers for you guys!

Blueangels said...

Haven't heard how Mike is doing in the last week.
Just checking in on one of my favorite cyber famalies!