Saturday, August 9th, 2008

Saturday, August 9th, 2008 - Friday night chemo was fairly routine except for wetting accidents in bed. Since he was doped up on Ativan concurrent with the anti-nausea meds and receiving a lot of fluids as the Doxo and Cisplatin were infused, Mattie was somewhat incoherent and had trouble both controlling and making it to the potty in time. Frankly, I would rather have to change sheets multiple times a night than have Mattie suffering any more that he is presently experiencing. Kathy the night nurse was very understanding and helpful, so it made things a little less difficult to experience.

The morning found Mattie feeling nauseous and vomitting. The Cisplatin had finished its run at 3am or so and the Doxo was still going, but the combination of the Ativan and Zofran was not working for him, and Mattie started becoming more and more alert, agitated and restless not to mention sick to his stomach. Mattie has emesis (vomitting) several times in the morning and then after his scheduled dose of Ativan, he settled down for a little nap, which gave Vicki a chance to talk with Alison, our other local "Mom-on-point" since Ann was traveling to Boston to see her family (and a Sox game). Mattie's condition persisted with emesis every 30 or 40 minutes althought the quantities were small. In the afternoon, Mattie finally settled down and shut his eyes around 4:45pm and slept for some time. Tonight, we will continue with the basic hydration routine and blood tests to ensure that Mattie's blood chemistry and electrolytes remain in balance and that his nausea and emesis goes away for good. We will then focus on him eating and drinking normally and on getting his intestinal tract moving regularly as well as monitor his weight.

Our night time routine is simply insane. Vicki starts out in the rollaway bed in a some times vain attempt to collapse, while Pete works with Mattie until he settles down and goes to sleep, which last night was around 1:30am. Pete sleeps in the chair so that we can pop up quickly to handle emesis or urination. Then, at some point in the night, we switch roles and places (without really asking each other). Between the beeps and alarms, nurse visits and medications and Mattie's discomfort, we are unable to get much sleep. Even without beeps and alarms, nurses and medications, we are eaten alive with this situation, so I guess sleep is not something to expect. Though it would be ideal for Peter and I to take turns at night sleeping in the hospital, we have found that it takes the two of us and a nurse at night to manage his vomitting and urination.

So the rest of our time in the hospital will be focused on getting Mattie stabilized. We are scheduled for an MRI of his left arm and right leg on Tuesday, so we'll have to decide if we stay in the hospital or attempt to go home briefly. Right now, the less change for Mattie the better.

As many of you know, this blog is Peter's creation and he is the sole author on all the actual postings. But I feel the need to say a few things. First, I am thoroughly impressed with Peter. He is handling this situation with such grace, strength, and dignity. I am also grateful for his technology skills (thanks Voxiva!), his ability to sift through complex information and make it understandable, and for the energy, focus, and compassion he puts into each blog entry. Second, I feel blessed to have such an incredible network of friends. In the midst of what feels like our world coming to an end, I see all of you mobilizing forces, volunteering in every way possible, and empathetizing on such a deep and genuine level. You have restored my belief that there is goodness, beauty, and love in the world. Not any easy thing to say, I must admit, when you learn your child has cancer.

I received a gift today from a wonderful mom who I have gotten to know this year at SSSAS. She came to visit and while talking with me she took off the necklace she was wearing with the word "HOPE" on it and gave it to me (Hope is her middle name). She had me look at the necklace and I noticed after the actual word was a period for punctuation. Somehow the word "HOPE" with a period after it, made a profound statement to me (because we have no other alternative, we must have hope) and will be our motto for the year. I wanted to also share a story with you that speaks to the emotional rollercoaster that Mattie is riding. I had to wake Mattie up this afternoon because we have found if he doesn't wake up every 90 minutes to use the bathroom, we have a major accident on our hands from the diuretic. So I woke him up and he was very mad at me for doing this. I finally convinced him to go to the bathroom, at which point he started punching me, kicking me, and then saying I was a terrible mom, and he hated me. Thankfully having some insights on such mental health issues, I stayed calm and talked him through his anger and his fears about the total lack of control he has over his situation. Once it was all over though and things calmed down, I landed up crying right in front of Mattie. Mattie then reached for a tissue and wiped my eyes and face for me and then gave me a big smile. It was a beautiful moment that illustrates his sensitivity and the incredible strength he has. Despite going through a harrowing 48 hours (which included a lot of vomitting today), he still found the inner strength and compassion to think about others in his life. After witnessing this, this gave me great pause. I have a feeling through this cancer journey I will learn a lot about life, love, and courage through my incredible six year old, Mattie.

I also had a visit today from a dear friend of mine who has significant training as a grief counselor. Amany and I have gone through all the ups and downs of life and graduate school together. She helped me process through some of the anger I have been feeling and truly listened to my concerns and fears, something which I have been really hoping to get from the social support staff at the hospital. It pays to have a good friend with outstanding clinical skills.

Lastly, a big thank you goes out to Ann Henshaw. Even though she is on vacation in Boston this weekend, she made it her business to call me today to check in and ask what I needed. Thank God for the Henshaws and for bringing all of our friends into our lives.