Thursday, October 23, 2008

Update on today

Well, the surgery went well. Mike is home and ok. Definitely not himself. He is uncomfortable, not in pain but uncomfortable. :( I hate seeing him like that. I will be up all night because he is breathing loudly from the suctioning and the intubation (sp?) from the surgery.

The right side of the body was preferable for the port placement but since the VP shunt is threaded down that side they had to place it in the left side. They also did a neuro-physiological nerve conduction study on Mike. They did it in the OR after the port was placed. That was done so that the Drs will have a baseline for how Mike's nerve function is before chemo is started.

It is so insane to be planning and going to all of these appointments so that we know where Mike is now and we can make sure that the chemo that will be given to him to stop and hopefully, God willing, shrink the tumors doesn't cause any regression in any other parts of his body. We have gone through a speech eval, hearing test, eye exam, neuro-pathology, OT and PT. All of those things can be affected by the chemo that he will be getting.

And speaking of the chemo, nope, it didn't happen today. They came in as we were in the OR holding area to tell us that we wouldn't be doing it today. It turns out that since they don't know what kind of tumor this is (which still blows my mind that it is 2008 and all the neuro-pathologists can't figure this out) they don't really know if the chemo he will be getting is going to do its job. In order to monitor more closely and more definitively they need to check the cerebral spinal fluid. Which means a spinal tap will have to be done. Unfortunately many spinal taps will have to be done. On top of the MRIs every 3 months Mike will have to have a spinal tap done to monitor the levels of tumor cells and proteins in the CSF. If the proteins go down, the chemo is working. If the proteins go up, it isn't and we have to change the protocol. If they stay the same it could go either way.

So, on Wednesday we will go back to Sloan for a baseline spinal tap and to start the chemo treatments. I am glad it will be on Wednesday. Matt will be up here and the primary Dr on our case is the Dr on that day. I think it is important for Matt to be able to meet the Dr and to come to the place that Mike and I will be every week for the next 64 weeks.

Well, I have been up since 4 this morning and I am exhausted and drained so I am going to try to get some sleep. Even if I just lay here and listen to him breathe at least it will be down time, right??

Thank you all so much again for all of your prayers. Please keep them coming...

Love,
Chrissie

6 comments:

Train Wreck said...

I don't think I could ever put into words the amount of awe I have for the strength that you have been able to exemplify since it all started.

I understand that we all come to a point in our lives where we come face-to-face with a challenge that tests us physically, mentally, emotionally & spirtually. And, as much as I am so amazed by the determination that little Mikey is showing & how his spirit & charisma gives everyone hope... I have to say that I shake my head in disbelief at what you have been doing & have been through these past few months. Quite honestly, you are one of the strongest individuals I know. And it is the strength (I believe) that is embedded into Mikey's personna... and it is this strength that will get him through this.

And if there is ever a moment where you feel weak & you feel you can't go on and that you're going to fall, your family won't let you fall... your friends won't let you fall... because we all have faith in you & faith in Mikey.

Big hugs & and lots of love, Nails...

-- The Hammer

Train Wreck said...

I don't think I could ever put into words the amount of awe I have for the strength that you have been able to exemplify since it all started.

I understand that we all come to a point in our lives where we come face-to-face with a challenge that tests us physically, mentally, emotionally & spirtually. And, as much as I am so amazed by the determination that little Mikey is showing & how his spirit & charisma gives everyone hope... I have to say that I shake my head in disbelief at what you have been doing & have been through these past few months. Quite honestly, you are one of the strongest individuals I know. And it is the strength (I believe) that is embedded into Mikey's personna... and it is this strength that will get him through this.

And if there is ever a moment where you feel weak & you feel you can't go on and that you're going to fall, your family won't let you fall... your friends won't let you fall... because we all have faith in you & faith in Mikey.

Big hugs & and lots of love, Nails...

-- The Hammer

DysFUNctional Mom said...

I hope it all goes as well as possible. I'm glad it worked out that the spinal tap & chemo will be on Wednesday. It's the little things...

Andersen Family said...

I'm glad everything went well. You are a very strong family. Your apt schedule sounds like ours. It's gets to be pure craziness. You will get through it though. The year will be a daze but you will get through it. I'm so happy for you that Matt will get to meet the Dr's it's important for him to feel like he knows what's going on and to be involved too. That's one of the hardest parts for us. I'm always with Rylee and James is with Drew so it's usually just me with her. I hope you get some sleep tonight and hope you guys had a good day.

Janet

Jenn said...

I love you Momma...
hugging you now...

Amy Oliver said...

I'm thinking of you daily, Chrissie... more than daily, actually. Please give Mike lots of hugs from us.

Amy
another 2005 mama