YAY!! Mike's counts are up!! :)

So Mike now officially knows some Sloan terminology... we walked into the IV room and Mike says, 'fingerstick'. Of course, coming from the mouth of a 3 year old with a speech delay is sounds like 'finadiks' but I knew what he said... and so did Caitlin, the receptionist in the IV room. It was actually quite pathetic because he said it through tears while he was holding his hand up ready for them to stick him.
Katie came with us today since she was off from school for the Immaculate Conception. She was so excited to come... she loves the playroom and the fact that Mike gets so happy when he realizes she is coming just makes her feel like a million dollars.

Anyway, there we were waiting... and waiting... and waiting again. Katie was hungry so my Dad took her to the cafeteria. They were gone about 15 minutes and Mike and I were called into exam room 4. Dr. Lyden was there with Mary, our favorite NP. Mary took one look and said his numbers look good!! :) His WBC is 11.7, HGB is 11.5, Platelets are 358, and ANCs are up to 7.5!! HOORAY!! The transfusion and 5 days of Neupogen injections did just what they were supposed to do! No transfusion again today!! They checked him briefly... he sounds a little wet to me, like he is starting to get a head cold and they agreed, he sounds wet in his head area but it isn't in his chest so that's a good thing. His temp was great, his ears look good and his blood pressure was good too :)

So, we are home now. He's napping and Katie and I are getting ready to play Candy Land. :) We go back on Wednesday for week 7 of chemo. Both drugs this week so it's going to be another long day at MSKCC.

We hope you are all doing well. Thank you so much for the good thoughts and prayers.

Love you all,
Chrissie

Another emotional release...

Well, here we are... just about 24 hours after getting home from Mike's first transfusion. Matt is here, Christmas decorations are going up, the kids are ok... I mean, Mike is still cranky and I can tell he isn't feeling right but for everything he has gone through, especially this past week, he's ok... so I should be ok. I really should be ok, right? But, I'm not. I'm tired... I don't mean just I need to get a nap tired... I mean really freaking tired. I am tired and drained in every way that a person can be tired...emotionally, mentally & physically tired.

I was driving in Brooklyn today and saw a billboard for St. Jude's Research Hospital. It showed a little girl and said, "Ellie Vs. Brain Tumor. Let's help Ellie win." and said that Mike is one of those kids. That's a harsh reality to deal with. Mike, my 3 year old, has a brain tumor. Actually, if I want to get picky and get into semantics, Mike has an 'unidentifiable central nervous system tumor' because it's in the brain, spine and cerebro-spinal fluid and they can't tell where it started. Still, for some reason they call CNS tumors, brain tumors so it's all just a play on words I guess. But, that could be Mike on that billboard. Granted, he still has hair... it's thinning but it's still there but that could be him, on a billboard for the world to know he is fighting a brain tumor.

All around me people are Christmas shopping, listening to Christmas music, watching Christmas movies... and I am just not feeling it. My sister, E, says it's a bad day when the person who decorates her house like an elf came in and threw up Christmas stuff in it doesn't feel like she can get into the Christmas spirit but I can't. Don't get me wrong, I am doing what I should be doing for the kids... I am hanging the stockings, buying and wrapping the gifts, smiling, playing the Christmas movies and music... but I'm just not feeling it... at all.

I am still crying in the shower and worried all the time. There isn't a day that don't I worry that I am not doing everything I can to get Mike healthy and to make Katie feel like very little has changed. I am constantly feeling Mike's forehead to make sure he doesn't have a fever, watching him walk, scrutinizing every move that he makes to make sure he is doing things just as he was pre-tumor nightmare. I am constantly trying to make things up to Katie... I let her stay up an extra 15 minutes at night so she and I can just hang out together, I make a bigger deal out of every good test she brings home and I give her a bigger hug every time she walks in the door. I try not to put Mike in a bubble, I try not to treat them any differently but this changes you as a Mom. You always knew your kids were special and important and delicate and the best kids that ever walked the Earth, but this changes absolutely everything and every moment with them gets sweeter and that much more special.

Yesterday as we were leaving the hospital my sister E was playing with Mike in the playroom and my Dad was getting the car. I was waiting and watching Mike play. Behind me, one of our favorite nurses, Connie, was hugging a kid, she must have been around 10, and her parents. From the way they were talking I knew she had been a patient there for a long time but she had a full head of hair so I also knew she is in remission. They were back at Sloan for another set of follow-up scans because they were saying that they had to catch a flight back home since they were done for this trip. And as they were leaving Connie hugged the mom and said, 'Now take your healthy kid and get out of here'... and I just got tears in my eyes. Every mom that walks in that hospital hopes and prays to get kicked out of there like that. I realized just how much I want to hear that and how long a road we have to go until I do hear it. And I will hear it. I know I will hear it. I won't just hear it once either... I'm going to hear it again and again and again after every scan he has. I know Mike will be the healthy kid that gets kicked out. I know it because I will not accept hearing anything else. And along with Mike, I hope and pray that the other moms we know hear it as well. That the kids we know and have met at MSKCC, especially MK and CM, are sent out of there with clear scans year after year after year.

On that note, I am going to go hang out with Matt, Katie & Mike. I hope that you are all well. Please keep us in your prayers and the next post I make I will give you all the info on donating blood.

Thanks and Love to you all,
Chrissie

Transfusion, Surprises and more trips to Sloan...

Hi everyone....

Yesterday was a long day... and when I say long I mean looooong... one of those days where you swear someone stops everything and everyone but you and your 24 hour day becomes at least 2 days long.
We had to be at Sloan at 8:30 so we left Rockaway at 7. For the entire almost 48 hours from our chemo treatment to the time I had to get to Sloan on Friday I was praying and hoping that Mike's levels were going up with the Neupogen so that he didn't need a transfusion. We got there and had to do a finger stick. He hates that. I don't know that it's the actual finger stick that he hates or what but I think it's more the being held down part that he hates. Whatever part it is, the finger stick is not fun. The good part is that Sloan gets the blood work back in about 15/20 minutes so there is really no long period of uncertainty. Unfortunately, 15 or 20 minutes was all it took to be called back to the Dr and be told that his numbers dropped again, even on the Neupogen and he would be needing the transfusion. Yesterday his counts were (if you need a reference to normal levels the chart is on the right of this page)- WBC 2.9, HGB 7.5, platelets 280 (again, the only good one!), ABS Neut 0.5. So to say his numbers were crappy is an understatement. :(
I always knew a transfusion was a serious thing but I don't think I ever realized how serious the reactions could be. They gave him Tylenol (by mouth since he can't get a suppository) and an antihistamine since the blood products can cause a fever or an allergic reaction. I had never known that you could have an allergic reaction to a transfusion.
It took over 2 1/2 hours for the blood to come up from the blood bank! It was insanity! Mike was so tired by then and they had to wait until right before they hung the blood to get a blood pressure on him so they could use that as a baseline for during and after the transfusion. So, we kept him up because he hates his blood pressure being taken. I swear he silently gives the nurses the finger when they walk in with that cuff and tell him, 'It's ok, it's just a hug'. LOL
So, anyway, they finally hung the blood at 12:24... I think he was asleep by 12:45. I was able to talk to the nurses and Drs and they all feel that between the transfusion and the Neupogen his levels should come back by Monday.
Mike woke up around 2:45 and was done with the transfusion around 3:30. We were able to pack up and head home after that! :) Of course, he wanted to play in the playroom before we left so Dad got the car and met us downstairs so Mike could play for a few minutes before we left. :)
We got home and he was asking for dinner so I fed him... then I went upstairs to get changed. When I got back downstairs around 6 or 6:30 my phone rang and it was Matt. He immediately asked for Katie. All of a sudden she got this HUGE grin on her face... and got up and ran to the window. She started laughing and yelling "Daddy's here, Daddy's here!!" And sure enough, he was standing outside. It seems that he was so upset with Mike getting the transfusion and being neutropenic that he wanted to come up so he made last minute plans (and when I say last minute, I mean Friday morning he made the reservations) with free flights that were offered to him on Jet Blue through someone's Jet Blue card (We can't thank you enough!!) so he is here for the weekend. He is coming up next weekend too but next weekend we are going to see his family and spend the weekend upstate so this weekend is just for relaxing and making sure Mike is ok.
Next week I am going to post all of the information about donating blood for and in Mike's name at Sloan. I have to write my e-mail now and I will post it here after I send it out. Donating blood is such a wonderful thing to do... there are so many patients at Sloan who need it, and many of them are children. But I will save my blood donating campaign for it's own blog. :)
Well, that's all for now... I will update over the weekend to let you all know how Mike is doing and definitely on Monday after we get home from Sloan. Hopefully I will be telling you all that his numbers went up and that he didn't need a transfusion!! For now, we are all still praying and hoping that he feels good and that the chemo is working!

Please continue to keep Mike and our family in your prayers!

Love to you all,
Chrissie