Saturday, September 27, 2008

Saturday, September 27, 2008

It was a sheer pleasure to wake up today without hearing hospital sounds or anything else for that matter. It was peaceful at home. I told Peter he gave me a great gift last night, of a good night of sleep (since he stayed with Mattie alone at the hospital). It was also a joy to be able to get showered and dressed without stopping every two minutes to meet someone else's demands. One thing is for certain though, I knew I was tired, but now that I have stopped the hectic pace for one day, I can see just how debilitating all of this really is. My head, body, and stomach ache. The body is an amazing structure. While undergoing intense stress, our ultimate goal and focus is to survive the stressor. We devote all our resources to the stressor, but once we remove ourselves from this stressor, then we start to take a breath and truly feel and experience the impact all this stress has had on us. This is where I am at today.

I was able to fill Dr. Toretsky's second prescription today. If you recall, Mattie's doctor gave me two prescriptions: 1) for a good night's sleep, and 2) for a meal and conversation with Peter. Well I got the night of sleep (thanks Peter!), and thanks to Alison and my parents, we were able to leave the hospital for four hours today. We went out to lunch and chatted with each other. Actually Alison came up with this idea long before such a plan was prescribed for me. Alison (Paul's mom, one of Mattie's kindergarten buddies) and I haven't known each other very long, but Mattie's illness has brought us closer together and through this experience our friendship is growing. I am grateful for this opportunity to get to know Alison and this gets back to my previous night's blog posting in which I mentioned that having to slow down my pace because of Mattie's illness, has enabled me to experience others around me in a more meaningful way. Mattie enjoyed his time with Alison, and he told me all about their imaginative game they played with a motorized knex car (thanks Denise!) which was being attacked by bugbots (thanks Charles!). Thank you Alison for the gift of your time and energy. These are priceless.

Mattie was visited today by Dr. Synder. Dr. Synder is one of the doctors in the pediatric hem/onc practice at Georgetown. Dr. Synder told us that Mattie's 24 hour bacterial culture was negative (a good thing) and that his absolute neutrophil count (ANC) was 33. Mind you his count must be 250 or higher to be released from the hospital. The absolute neutrophil count is the real number of white blood cells (WBCs) that are neutrophils. Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection. After chemotherapy the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature. As of today, Mattie continues to be severely neutropenic. But he does not have a fever, and his energy level is climbing. Because he is severely neutropenic, all playdates have been cancelled. This is an aspect of the disease that is truly difficult for Mattie since he is a very social fellow. Dr. Synder discussed with us what the next couple of days could look like for Mattie, and also the possibility that Mattie's counts may not be high enough to be released from the hospital on tuesday for us to head to Sloan Kettering. So we will just wait and see.

The other development today is that we suspect Mattie may have the start of mucositis or a sore in his throat. Mucositis occurs when cancer treatments break down the rapidly dividing epithelial cells which line the GI tract, particularly in the oral cavity, leaving the mucosal tissue open to ulceration and infection. Mucositis can occur anywhere along the digestive tract. Oral mucositis is probably the most common, debilitating complication of chemotherapy. Peter and I have tried hard to convince Mattie to eat and drink today, and to take a lozenge medication to prevent mucositis. In addition, Mattie has to occasionally take bactrum to prevent pneumonia. Needless to say, Peter and I were unsuccessful with getting Mattie to take the lozenge and the bactrum. But in walks Tricia, Mattie's nurse. She was able to work with Mattie and got him to take both medications. We were thrilled! Tricia rationalized with Mattie and really believed he could do it, and Mattie rose to the occasion. Though Tricia is pretty sure that her trick will only work for today, because by tomorrow, he will be onto us, and will not want to take the medication in applesauce. None the less, Tricia is one of the nurses who makes this whole nightmare more bearable.

In fact, the nurses are becoming part of our family. Peter and I tonight had the pleasure of talking with Tricia and Erin. We are getting to know more about them, and both Tricia and Erin have brought in pictures of their puppies to show us. This aspect of closeness is like no other I have ever experienced with the medical profession. We realize the nurses work very hard, and when we can, we like to acknowledge them. Peter and I brought in a treat for the nurses in the PICU tonight. We left the treat with Erin, and then five minutes later we had a knock on our door, and in walked three nurses who thanked us for thinking of them. What I am trying to get out here is that walking into C52 (the PICU) is like walking into our home away from home. It is a special place, because of the attitude and care of the nurses.

On the electronic front, thank you Kim, Lorraine, Susan S., and Karen (Happy Honey Month!) for the great e-cards, and Coach Dave, Barbsie, and Susan C. (thanks for the prayers from your school) for the wonderful e-mails. I will close tonight with a special thank you to Team Mattie. We received in the mail a huge Mrs. Fields cookie that was decorated on the front with the words, "welcome home." Thank you for thinking of us and for celebrating the fact that Mattie completed his second round of Doxorubicin and Cisplatin!