Saturday, August 23, 2008

Saturday, August 23, 2008
We started our morning with a visit from Siobhan Starr, a mom from RCC. Siobhan brought us breakfast, and all sorts of treats and gifts. The ironic part is we never met Siobhan while we were at RCC. However, I imagine by now you as a reader are understanding that RCC is a special place. When one person in the RCC family is impacted, so is everyone else. Thank you Siobhan and Mary for all the great books and the videos. "Scooby visits Batman," was a hit today!

Mattie woke up this morning fever free. He started off this morning with a lot of energy. In a matter of two hours, he assembled a boat and plane out of wood pieces using glue and then painted his creations (Thanks Linda for the great supplies!). After that we played several rounds of Battleship. Mattie seems to really take to this game and the strategy needed to hide his ships from his opponent. The picture on the left shows Mattie painting the wooden plane he created. In between assembling and painting, Peter and I periodically took glances outside our hospital room window. From the window, we can see the Georgetown soccer fields. Today we watched goalies training, and I am convinced there is no amount of money you could pay me to leap in the air, dive for a ball, and come crashing down on my arms and body defending a goal. The picture below is the view from our window!


On one hand it is lovely to have such a view, but on the other hand this view makes me understand and appreciate how convicts in Alcatraz (a federal prison on an island in the bay of San Francisco) must have felt when this prison was still operational. If you have ever been to Alcatraz, you know that from the island where the prison is, you can literally see the sights and sounds of San Francisco, but because you are surrounded by water and can't get to the mainland without a boat, you feel isolated and quarantined knowing that your life has changed and you can not be a part of the everyday things and pleasures you once took for granted. This is analogous to how I feel sometimes when I look out at the soccer field. I see young and vibrant people playing and conversing, and yet the hospital window is my Alcatraz. I see the healthy world before my eyes, and for one brief moment, I long for what life used to be like for my family and then of course Mattie will say something to me, which brings me back to my current reality. But I digress.....


We met with Dr. Abu-Ghosh today and we talked with her about Mattie's current condition. Mattie has no fever today, and we found out that his 24 hour blood cultures came out negative, which is a good sign. Mattie's hemoglobin and platelet levels are rising today. Another good sign, which means he will not need a transfusion this go around. However, Mattie's neutrophil count dropped further today to 15, yesterday it was 60. So he is severely neutropenic. In order for Mattie to be released from the hospital, we are told that the level must be near 200 and rising. So, Mattie remains on fluids and antibiotics and they will continue to monitor his blood counts daily.


The isolation during neutropenia doesn't only impact Peter and I, but it also affects Mattie. Today he started crying and said that it wasn't fair that he should have to stay in his room. He wanted to walk around and go into the hallway. We agreed with him that nothing about this process is fair, but that we are very proud of him for how he is handling all of this. We told him he is much braver than we are. He also said to us that he knows he is going to die. Again, hearing such statements from a six year old can be overwhelming at times, but we try to listen to his fears, and try to normalize them (if that really is possible!). After listening to him, my new line with Mattie, is "dying is not an option," and also, "we are here to fight this battle, and we know you can do it and you won't do it alone."


After this conversation, we located Tricia (one of the fantastic Oncology nurses) and Dr. Abu-Ghosh, and they gave Mattie the okay to walk the hallway with a mask on. The mask did not thrill Mattie, but he was motivated to get out of his room, so on came the mask. As we started to head for the hallway, I quickly assessed who Mattie was looking for. He was looking for LINDA! I explained to him that Linda doesn't work at the hospital on Saturdays and Sundays. So with that he did an about face and was going back to his room. But we were able to convince him to sit in the hallway and work on model magic. Below you will see some of the great creations he made with Peter.

While Peter, Mattie, and I were working together, I had the lovely opportunity to meet with Marilyn. Marilyn approached me and started talking with me. Marilyn is the coordinator of the Lombardi Center's Parent Link Program. She is a nurse and a parent of a Lombardi center cancer survivor. We had a delightful conversation, and we shared our stories. Then Mattie started getting tired and we headed back to his room.

Later this afternoon, we received a visit from Julia Lee. Thank you Julia for bringing us dinner! Mattie loved the shredded cheese, chicken, and eggs! The apple juice was a big hit too! The egg dish reminded me of a meal my grandmother used to make called mozzarella en carozza. So this was very special. The videos of Kate and Eric (Mattie's preschool buddies) were also wonderful and it made all of us smile to see their messages to Mattie. In any case, it is all quiet on C52 (our unit) now, which is saying lot, since it was like a day from the drama series "ER" today on the floor. But it was a good night. Mattie ate LOTS of food, took all his medicines, and even changed his clothes. Thank you all for your continued support, cards, gifts, and e-mails. It is a very empowering feeling to know that we are not going through this alone. Thanks Julie for all that you have done for us this week, you have done a great job coordinating things for Team Mattie.