Tuesday, September 23, 2008

Tuesday, September 23, 2008

I wonder if I jinxed myself by reporting on the blog that we had a good night of sleep on sunday night? I say this, because Monday night, was a night to remember. Literally Mattie was up on the hour. He literally said he did not feel tired, and looked wired and ready to do something. At 4am, I gave up with this in and out of bed routine, and instead we all officially got up and went downstairs. Peter was on a conference call with India at the time, so Mattie and I were kind of watching him, and doing our own thing at the same time. Peter is quite a good multi-tasker though, and he can run a conference call and answer my questions all at the same time. He's better than I am at 4am!

Needless to say, without much sleep, Mattie has an edge today. In addition to being edgy, he is quite nauseous, vomiting, pale as a ghost, and unable to drink or eat anything. In fact, he really hasn't drank or ate much of anything since he has been home from the hospital. I called Mattie's nurse today, and she is starting Mattie on hydration, which I think is a great idea! In the midst of dealing with all of this, I am trying to convince Mattie to take a shower or bath. I am meeting intense opposition. Considering the circumstances of how he is feeling, I am not pushing it. I did administer his G-CSF on my own today, and did that successfully, and tonight I will figure out how to administer IV fluids and IV Kytril (which is an anti-emetic). So one thing is for certain, I did not sign up to be a nurse in life, but I am certainly getting some basic training.

Today was one of those days when both Mattie's mood and my mood matched, in essence we were both down. I think it hit both of us today that even though we are home, what's the difference? We are still confined to one place and are unable to really live a normal life. Anyone who tells me this is the "new normal" should have to experience it for a while. There is nothing normal or should be normal about this. When feeling at my worst today, I checked e-mail and I receive an e-mail from Kim. Kim is Mattie's preschool director at Resurrection Children's Center (RCC). Kim invited Mattie and I to the RCC playground on wednesday at 1pm to have a picnic lunch with the teachers. I am not sure how Kim knew to do this, but this e-mail invitation was such a welcomed offer today! Mattie seemed very excited by this prospect, and it is my hope that the anti-nausea meds and the hydration help him so that he feels up to going outside tomorrow.

As many of you know, we have been trying to arrange for a consultation with doctors at Sloan Kettering. We just heard back from the hospital today and we have an appointment with Dr. Paul Meyers and Dr. John Healy next wednesday. We will leave for NYC next tuesday afternoon, right after Mattie's MRI at Georgetown Hospital. We will only stay in NYC for a day or so, and will be traveling up probably by car and staying at a hotel a block away from Sloan Kettering. I want to thank all of our NY friends and family who are willing to host us, but I want this trip to be as convenient as possible for Mattie, and the closer we are to the hospital the better. Thank you so much for all your wonderful offers though and support.

On a very special note, we received an e-mail today from Danelle and Brian Fortune. Peter went to business school with Danelle and also we reconnected again with the Fortune family at RCC (Mattie and Nora Fortune were in the same preschool class). Brian works with Ted Kennedy, Jr. As some of you may know, Ted Kennedy, Jr. was diagnosed with osteosarcoma when he was in 7th grade. He had part of his leg amputated, but has gone on to live a very full, productive, and successful life. Apparently when Brian told Mr. Kennedy about Mattie, he wanted to talk with us and lend his support. We are in the process of working with Mr. Kennedy's scheduler so that we can have the opportunity to connect with such a powerful successful story and a man who is such a passionate advocate for cancer patients and people with disabilities. Thank you Brian for this incredible opportunity!

On the electronic front, I want to thank Karen, Susan, Lorraine, and Kim for your wonderful e-cards, and Emily W., Zachary, and Bunny for your great e-mails. Thank you Barbara L. for a wonderful dinner tonight. After a day like today, the idea of even seeing the kitchen wasn't appealing, so we really appreciate you cooking for us and delivering such a nice meal! Let's hope tomorrow is a better day!