Thursday, October 30, 2008

10 hours, one spinal tap and the first of 60 weeks of Chemo update...

Thank you to everyone who e-mailed, called or left comments on my MySpace and Facebook to check in last night. I am sorry I haven't updated before this but I was exhausted last night and just wasn't awake enough to post anything.

So, we got to the hospital at 7 yesterday morning. We were scheduled for a 9AM spinal tap procedure. I wasn't thinking on our way in and was hoping that they could access his mediport while he was under. When I got there they reminded me that he needed to have the anesthesia for the procedure and that the Drs would administer that through the port. I got the Emla cream out to put on the site to numb it and we waited about 1/2 an hour for it to take effect. I really think the anxiety of the port access is worse than the access itself. We have to hold Mike still so they can put the needle in the port and I think he hates being held down so much that it just makes the access worse. Anyway, after they got the port accessed we went to the playroom. He was running and playing and then they came in to get him. We went to the procedure suite and waited there for the nurse to come out and get us. When she did she told Matt and me that we were supposed to come into the procedure room with Mike and hold him while they put him to sleep. I wasn't allowed to do that in Florida and I wasn't allowed to do that for the surgery last week b/c they had to intubate him so I was not too thrilled with that but in I went with Mike in my arms yelling and crying. When we got in the room he was still screaming and the anesthesiologist started talking to us. We signed the consent for the anesthesia and she started pushing this milky white stuff (prophephol (sp??) into the tube connected to the port. Before she even got 2 ccs in him he was quiet and they told me that I could lay him down! He was zonked in a matter of seconds... I couldn't believe it! The procedure lasted about 10 minutes and they came out and told us that he was fine and in the post-procedure room recovering. The nurse brought a sleeping Mike out a few minutes later and we were on our way to the day hospital bed area.

We got to the bed area around 10 in the morning and he woke up like he had never slept at 10:15!! At 11:30 the Dr came in to talk to us about the chemo and to have me sign the consent form for the protocol of chemo that Mike will be on. It will be 62 weeks in total as long as this chemo seems to be working, the side effects aren't too bad and his blood counts stay on track. If any of that doesn't happen then the chemo will be longer and might have to be changed. So, after we signed the consent for the chemo the Dr had to order it. The nurse came in to talk to us and she was lovely! We are very happy with all of the nurses there... and our nurse seems so sweet, very informative and is so good with Mike.

Around 12 we went to the playroom and played...and played... and played...until 2 when Mike was so tired and the lunch finally came! He had his eggs and ketchup (or ketchup and eggs as it ends up being! lol) and then at 2:45 he was just so tired that I climbed into the hospital bed with him and held him. He fell asleep around 3 and then at 3:15 the nurse came in. She talked to Matt and me about the meds she was putting in the IV. The first was the Zofran, an anti-nausea medication. That dripped for about 25 minutes. Then she came in with the first chemo medication, VinCristine. It is a very small dose but as she put it, 'It's small but very powerful' and to that I said, 'just like Mike'. She got ready to put it in the tube and I found myself crying. I was just so overwhelmed and didn't know how to feel that I just cried. My 2 year old was then officially on chemo. She pushed the syringe of meds into the iv line and then hooked up the 2nd medication, Carboplatin. That dripped for about an hour and then she flushed the line and put some heparin in the mediport so that a clot doesn't develop and prevent the use of the mediport. Thankfully, there was no allergic reaction to any of the meds and he tolerated the first dose just fine.

We were finally able to leave around 5 pm. Of course, that was prime rush hour traffic time but we were just so glad to get out of there we didn't care. Mike watched his DVDs in the car. He was laughing and talking the whole trip!! When we got back to my mom's he was running and playing with Katie and my sisters until bedtime!!

He is such a strong kid. I am so proud of how great he did yesterday. It is amazing to see all of the kids there going through so much with smiles on their faces. It was Matt's first time being at the Pediatric Day Hospital at Sloan Kettering and he didn't realize how hard it is to go there. He was quite overwhelmed. No matter how cheerful and fun they try to make it, it's a children's cancer facility and there is no way to get away from that. I think it is just a testament to the people that work there to have the kids go in and have fun, laugh and smile while they are there.

Anyway, 10 hours, one spinal tap and the first of 60 weeks of chemo is done. I am off to make breakfast for my tough guy. Thank you again for the prayers and love and support. We hope you are all doing well...

Love to you all...



Kathryn said...

I've been crazy busy here and haven't had time to post. But I wanted to let you know that Mike is my prayers daily and he continues to be in the prayers of my friends and family as well as on the temple prayer rolls. Give Mike and Katie an extra hug from me and have Matt give you a huge one from me as well. It's not the same as me giving one but it's the next best thing. :)

renee said...

oh, love.. you are so near in my thoughts.
one day at a time mommy, and if that's too much, one hour at a time, still too much, one minute at a time. Mike CAN do this, and he will, with you by his side.
You and Matt remember to lean on each other, sometimes he will hold you up and sometimes you will hold him up. but, you will succeed in helping your little boy heat the hell outta this thing.

DysFUNctional Mom said...

62 weeks is mind-boggling. I'm glad he did well this time.

Anonymous said...

You are in my prayers, give mike and katie and extra hug each day and call me if you need anything,

jenn said...

hey girl - i just got to read the blog now and boy am i proud of you and im hurting with you too - i love you guys so much i dont know what to say except what ive been saying (and when you get tired of hearing it let me know LOL): whatever i can do, dont hesitate to ask.
wine is chilling...