Tuesday, August 5th, 2008

Tuesday, August 5th, 2008 - Well today was as normal a day a six year-old could have who is diagnosed with metastatic osteosarcoma, been operated on the day before and spent the prior night in a strange hospital with his parents. Anyone who has spent a night or more in a hospital knows that it is no place for a sick person. We all had to make adjustments to the small room, tight quarters, steady flow of nurses, technicians and doctors coming through the door, but we survived.

Mattie spent the morning still shaking off the effects of the general anesthesia, which slows the metabolism, not to mention the morphine we had to administer at 3am this morning to address the pain from the line surgery and the tumor in his right arm. Mattie was needless to say restless all night long except for after the morphine. Fortunately with the line the morphine kicks in a lot faster than if administered orally. Mattie, Vicki and Pete played musical sleeping places throughout the night, shifting from the hospital bed to the extra cot to the lazy-boy recliner. The only place Mattie did not sleep was the cot. The hours seemed to pass both slowly and endlessly, yet in great number. It's hard to explain but you tend to lose your sense of time when in the hospital except when marked by an scheduled exam, dressing changing or medicine regimen.

We were fortunate to have once again at our disposal Linda Kim, the Child Life Specialist. Linda and Mattie have a real bond and Vicki and Pete were able to step out this morning for 30 minutes to get some fresh air. Part of the baseline activities include tracking and collecting Mattie's urine for a 24 hour period. We fortunately completed that tonight as this is done to establish his levels of cretin (i.e. an indication of kidney function) prior to beginning chemotherapy.

I am happy to say that the only real dramas for Mattie today were the room change (we are now in C5210) as Mattie was not expecting this, and that Mattie broke the bowl part of his swimming fishbowl automated toy that he was given yesterday. We recovered from the room transition thanks in large part to Linda, who quarantined and portion of hall outside of Mattie's door, and turned it into a painting studio (Mattie got to use syringes and surgery swabs along with water-based paints on 4 foot wide paper that that taped to the walls and floor. Also, fortunately for us, Pete sent Ann Henshaw a note for help in securing a new fishbowl, which Grace Putnam had given Mattie, and which was delivered tonight, so many, many thanks to our support network for making this happen. As childish as it sounds, to a child the automated fishbowl (it uses hidden magnets to move the floating fish magically) is a really big thing and great distraction.

We also received a nice arrangement of flowers from Mrs. Joan Holden, Head of School and the St. Stephens and St. Agnes Community, and although Georgetown apparently has a policy of no flowers in patient rooms in this unit, we can see them from our room, and of course the thoughts are much appreciated. Additionally, we are getting more and more comments on the blog from friends, family and in some cases strangers who share a common bond. The gifts that have been arriving are simply wonderful and so very thoughtful. So many of you have not only thought about us, and about Mattie, but also targeted things to help Mattie and us deal with this time while in the hospital.

We have several visitors today including Tom and Deb Berry (Coach Tom) and their two children, Sheila Zimmet, our dear friend Georgetown Associate Vice President, Kristin Emery, a RCC parent and pediatric PT, Amy Saxton, a co-worker of Pete at Voxiva, and Ann and Abigail Henshaw, who delivered yet another round of care packages including a new fishbowl and a Happy Meal. Abigail and Mattie had a "playdate" in the hospital room during which Mattie proudly showed off his artwork, his room, his IV pole and tubes and then quickly moved to a serious case of goofiness and infectious laughter emanating from both him and Abigail. It was a great way to end the day as Mattie largely forgot about things for a while and got to play with his good buddy Abigail.

We are very appreciative of all those who have been to the blog and posted comments, have sent emails, made phone calls and taken matters into their own hands to do things for us and to help in their own way. Although we want to personally thank each and every one of you for your heartfelt actions, our situation does not allow to do this right now. For any of you who regularly deal with us via email, we are barely returning any emails these days if that is any indication. There is just too much to think of and to deal with concurrently.

Pete's company, Voxiva, Inc, has been both incredibly supportive and understanding of our situation. Not only has each member of the senior management team personally reached out and offered to help in any way humanly possible, but they have left me alone during this time and have both covered my responsibilities and sent statements of support and love.

So tomorrow we are onto the PET/CT Scan. Mattie will go without breakfast and then onto an injection of a isotope an hour before the scan, and then will be knocked out for the PET/CT scan. During the time he is knocked out, the nurses will also remove his surgical dressings from his central line insertion, as this can be painful to the skin. Meanwhile, Pete and Vicki are learning the maintenance involved in maintaining the central line (daily flushings, heparin flushes, cap and dressing changes, etc.).

I know everyone is wishing good thoughts and sending a massive amount of prayers to Mattie for a positive outcome and a speedy recovery. At last count I think Mattie was on two dozen prayer lists in over a six states not to mention international prayers from Europe, Central and South America, Africa and India. It goes without saying that a boy cared for and thought about this much cannot ask for any greater love in this world. That also goes without saying for his parents!