It's been a LONG few days...

Hi everyone...

It's 4:48 on Wednesday morning and I am up... again... You all know Mike has been a horrible sleeper through all of this but Saturday night around 1 am the roller coaster really started... and it hasn't stopped yet.

Katie started with a stomach bug on Saturday afternoon and Mike picked it up Saturday night. I wish they would share the TV clicker and toys as well as they shared this stomach bug! Katie's came with a fever but Mike's temp didn't start going up until Sunday evening. Sunday night at 9:30 I found myself driving into MSKCC's Urgent Care because of his temp and the fact that he couldn't even hold water down anymore.

We were there all night and all day on Monday. They released us after giving him over 1 liter of fluid over the course of the 20 hours we were there and told us to come back Tuesday morning so we didn't have to stay overnight. We were there from 8AM to just about 1PM today. He was doing so much better at home this afternoon. He was playing and laughing... and then at 3AM it started again... the diapers needed to be changed and he got sick again. The pediatrician on call said that we can wait until 8 when the neuro-oncology team comes in to call and talk to them but we will probably have to go back and be seen today. I had assumed that would be the case, I am just glad he didn't tell us to get in there right now.

So, now I wait and hope and pray he doesn't get sick again and try to figure out how I can be at the hospital with Mike while being at Katie's school Passion Play that she is in this morning. I hate that part... I feel like in order to take the best care of Mike there are too many times that I have to ask Katie to sacrifice something. I felt like a horrible person on Monday when I was at the hospital with Mike and she had to go to the doctor but I couldn't take her. My mom took her and while it is amazing that my mom has been so great, I should be the one to take her to the doctor. I am the one that is supposed to be there when she is sick and I couldn't be there. I HATE that. I HATE that she is only 7 and is learning already that there are disappointments like that in life. I am still going to try to figure out how to get to her play but if I can't, Matt will be there. He will take tons of pictures and I will talk all about it with her. It won't be the same and it won't be the way I, or she wants it, but I really don't know what else to do.

Well, I am going to try to get an hour more of sleep so I can be up and ready to bring Mike to the hospital in the AM. I will update from there later.

Hope you are all well. Please pray that Mike feels better soon and that things settle down here for us soon!!

Love,
Chrissie

To stand or not to stand...when it comes

Hi everyone...

So anyone on Facebook knows that Mike had PT and OT yesterday. It was a big day for him. The physical therapist put him in the stander. There had been talk of a stander before and they have expressed the idea of having Mike use one before but I had never heard of one before all this. And I certainly didn't think Mike was ready for one so when they came out and told me he was in it I was shocked! And not only was he in it but he seemed to like it!!! I can't watch him in the treatment room when the therapists are working with him but I could tell he was doing ok. Yesterday was going so much better than the normal PT/OT appt, he was doing his usual crying and yelling in the treatment room but there were more quiet time yesterday than normal. When L & M (the OT and PT) came out to talk to me while R (the other PT) was working with him they told me that he had been in the stander for 25 minutes! I couldn't believe it!! He was weight bearing for 25 minutes!! Sure, the stander provides a great deal of support but he had to be on his feet and he was tolerating bearing weight!! I was so thrilled. They brought him out in the stander. I have to be honest, I was so glad my dad wasn't there. It was hard to see for the first time. I mean, you know your kid can't walk and you know your kid has cancer and that this stander is a great thing for him because he can be up and it can help him gain the confidence that he needs to stand and start walking on his own again but it was hard. I had to fight tears because he needed to see me happy and proud that he was standing but deep down (well, honestly, not all that deep down, pretty much right on the surface with the lump in my throat) I just wanted to cry. This is what he came out in...



The fact that he stood for 25 minutes in it is wonderful though. If this thing is going to help him I'll do whatever I have to do to make sure he gets to use it there and that he gets one at home if he needs it and the therapists think that it will help him. We go back for more PT and OT on Thursday so I will pick their brains more about it then.

A few pieces of good news came out of our exam up in oncology... his counts are great again!! They are holding strong and all in the normal range!! :) YAY Mikey!! :) He did amazingly well with the Doctors also!! This was the first appointment in 6 months that he didn't scream the whole time, he actually helped the Dr with the stethoscope and blood pressure and let them look in his ears without screaming and crying and flailing all over the place! It was a good visit with oncology yesterday. Also, they ran the blood work that the GI needed done and ran a hormone panel again because of some strange hair growth on Mike.

Katie has been doing really well... she is definitely starting to show signs of the 'my sibling is sick' syndrome but all in all she's a great kid and isn't giving anyone any problems. I feel like I need to spend a little more one-on-one time with her so I'm trying to do that as much as possible. She has some great little friends and is such a happy kid... Matt and I are so lucky that she is so great and adjusts so easily! :)

Now, onto business... don't forget about the St. Baldrick's Foundation event at the Irish Circle in Rockaway on May 30th!! Click the dancing leprechaun on the top right of my blog and donate or get the info to come spend the day with us!!

I hope that you are all doing well!! :) Please keep those prayers coming... my little man and our family need them!!

Mike's GI appointment

Well everyone, we had the GI appointment yesterday. I was a wreck going in because MSKCC jumped the gun and said to be prepared for feeding tube talk. I was so relieved when a feeding tube didn't even come up yet. The Drs and nutritionist at NY Presbyterian were wonderful! They were so easy to talk to actually listened. They offered advice and gave me tips on how to get Mike to eat better and more.

We have to run a bunch of tests, allergy testing for milk and soy and a whole lot of stool samples. Thankfully they agreed to let us wait until Tuesday when Mike needs to be accessed at MSKCC to get the blood drawn for the testing. I also need to keep a 3 day feeding diary and they gave me trials of a couple of some supplements to add to Mike's food so that we can get added calories into him. Don't get me wrong, I know that if the tests don't come back with good results we will probably have to re-visit the feeding tube discussion but for now, it is on the back burner. And I am very comfortable with that.

Matt is heading down today so that I can go to a school fundraiser tonight. Katie is thrilled to get some Daddy & Katie time... she has already asked if she can stay up later so that she and Daddy can hang out since I'm not going to be home and after Mike goes to bed! :)

Well, that's all for now! Thank you all for checking in!!

Have a wonderful weekend and please keep those prayers coming!! :)

Love,
Chrissie