Heading to Sloan Kettering in the morning

We just got the word that Sloan will have a bed available for Mike tomorrow. I am so relieved yet so afraid. I am so terrified that the diagnosis is going to come back and it won't be the one we are hoping and praying for.

The transport team will be in our room at 9 AM tomorrow so we are hoping to be at Sloan by mid-afternoon since we have to ambulance to the airport then get on the jet and then ambulance from the airport up there to Sloan.

Please keep your prayers coming that this is a benign tumor and that we get a good prognosis.

Mike update 9.30.08

We made a big decision yesterday. In speaking to the Dr's here and at Sloan Kettering we feel that Sloan is the place we need to be. With this being an un-identifiable tumor after 10 days Matt and I, and our families think that this has gone on long enough, actually we think it has gone too long, with no answer and that the best place possible for him is Sloan.

The neuro-pathologists here and the neuro-pathologists that they sent slides to at Duke can't figure out what kind of tumor this is in his spine. So, Mike had another surgery last night. This one was done so that the surgeons could get more tissue that all of the pathologists feel that they need to make a diagnosis. He was in surgery for about 3 1/2 hours. They had made sure to wait long enough in there for the pathologists to see that they had enough to work with. When the pathologists looked they didn't feel that there was enough tissue from the Drs just getting pieces of this coating on his spine so they actually ended up having to go into the spinal cord to get the tissue they needed from what looks to be the main tumor. They got what they could and what the pathologists said was enough for everyone to work with and still have enough to save to send to Sloan.

My mom stayed the night here with me last night so she could help me and I could help Mike. I was really glad she did because when we got to the PICU last night around 10 Mike had a very rough first couple of post-op hours. He just kept laying there saying all done, no no, ouch, uh-oh, crying and calling for me. The worst was when he started I sit mommy in chair, i sit mommy in chair... I hated hearing him that way. I was really hesitant to pick him up since he just had spinal surgery but the nurses and the neurosurgeon PA all said it was ok for me to hold him. He laid on me and fell asleep for about 2 hours so that was a HUGE blessing. Around 2:15 the nurse came in to give him more pain meds and to take his vitals so we moved him to the crib for that. He is VERY guarded about moving himself too much. He is moving his arms and legs very well and he is speaking well but the incision that they made in his back is so big and add that to the fact that they had to go into the spinal cord while they were doing the surgery he is uncomfortable enough to be very cautious of how he moves. We are still in the PICU and I am grateful for that. The nurses here are wonderful and have all been so great with us. Don't get me wrong, the nurses on the regular floor are great too but there is just something more comforting about being on the PICU just after surgery and making sure that the nurses are just a little more on top of him here than on a regular floor.

He is doing really well now. We have been giving him Tylenol w/ codeine every 4 hours to control the pain and uncomfort that he is feeling. He is eating and is sitting in the high chair now playing with his DVD player. We are hoping to be transferred back to a regular floor today.

Needless to say, Mike and I both have a reputation around the hospital, he is the adorable stubborn little guy who hates anyone in scrubs and I swear they must think I'm a lunatic. This not knowing what the hell is growing inside his little body makes me sick to my stomach and I am absolutely beserk that between 4 neuro-pathologists here and 2 neuro-pathologists at Duke they can't figure out what kind of tumor this is. And I have no qualms telling that to anyone who will listen here. One of the neuro surgeons actually said that I was a new kind of parent to him because I talked to them like they were human and just told it like it was. I don't know whether that is good or bad but I took it as a compliment! LOL

Anyway, so far the plan for us is for Mike & I to fly into NY via air ambulance on Thursday. We are setting that up today and we will be admitted into Sloan Kettering as soon as the air ambulance and ground ambulance can get there. Katie's last day of school down here will be Friday and my mom will fly her up on Saturday. She will stay w/ my mom as long as Mike is an inpt. there. She is coming up to visit today so I am happy about that. We have all been very conscious to make sure she hasn't been at all left out of anything. We tell her what we think she can handle and make sure she is involved in everything since she is a part of the family. St. Francis already has a seat open for her and she will be in class w/ some of the girls she was friendly with in pre-k. My mother-in-law has offered to stay here for a few more days and pack up my car with stuff that we will need while we are at my mom's and will drive my car up for me.

So, that's the story for now. Thank you all so much for your thoughts, prayers, phone calls, etc. It means so much to me that you are all thinking about us and praying for us. We can certainly use all the prayers we can get! I will be in touch later and update when we know more. Thanks so much again! Love and miss you all

Mike update 9.28.08

I would live in Florida for 100 years if it meant not having to move back to NY for something like this.

We have decided to go back to NY for any treatment that Mike will need. Even though we don't have a diagnosis we have learned that pretty much any spine/brain tumor gets treated w/ chemo regardless of whether or not it's benign or malignant. The support system we have up there is amazing. Down here, as wonderful as everyone we have met is, it just isn't the same as having my family all around me for the very long, very hard months ahead.

We pretty much have all the details worked out. Katie will go back to her old school where my mom works and we will live with my mom. Matt won't be able to come since we can't lose the insurance. We just told Katie this weekend while she was up here that we will be living at Grandma's for a while so that the Drs can help Mike feel better. We didn't tell her that Matt won't be up there with us. He is going to try to work out his work schedule so that he can get up there every other week for 3 or 4 nights at a time.

I overnight UPS'ed Mike's MRIs, CT scans, X-Rays and stuff to a Dr at Columbia/NY Presbyterian and we have found a Dr at Sloan Kettering that will take Mike's case already. I think once I talk to the people at NY Presbyterian I will be more comfortable making a decision on where to go so that Mike can get the best care possible.

I am so numb with all of this going on. I can't comprehend any of it. It feels like I am living in a fog and just going through the motions. I don't know whether I am coming or going and I just keep hoping and praying that I am making the best decisions I can for Mike. It is just so absolutely horrible and beyond me that anyone should have to search for an oncologist for their 2 year old.

Thank you again for all of your prayers, please keep them coming... I will update more soon...

Love,
C