Friday, August 22, 2008

Friday, August 22, 2008

Mattie woke up today feeling tired and he said he did not have a good night's sleep. The morning got progressively more complicated as he grew very tired and lethargic. At around 9am, he developed a 99 degree fever and by 11:30am, it was around 101. We called into the clinic, and Dr. Gonzalez told us to come in as soon as we could. So Peter and I quickly packed our bags, because we suspected Mattie would be admitted for antibiotics. As many of us with children know, a 99 or 100 degree fever is nothing to even worry about or report normally. However, for a child undergoing chemotherapy, fevers can be deadly. When we arrived at the clinic we were greeted by Jenny (our resident art therapist) and Julia (one of the nurses who works in the Lombardi Clinic). On an aside, Julia and I got to talking yesterday and I learned that Julia previously worked at St. Jude's Hospital in Memphis, TN. Julia admired my "HOPE" necklace (and she had one too!) and told me that the HOPE necklace is a hallmark of St. Jude. She even took me onto the St. Jude hospital website, and I got to see the wonderful collection of HOPE jewelry.

We spent several hours in the clinic today drawing blood and trying to get Mattie comfortable. We tried to convince him to take Tylenol to bring down his fever. But we had no luck on that front. Even Jenny and Linda (Child Life Specialist) came in to try to convince Mattie. But like Peter and I always tell folks, when Mattie has made up his mind about something, it is very hard to change it, especially when fear is involved. We did find out that Mattie's Neutrophil count is rising today (60), up from yesterday's count of 50. Mattie's platelet count is also rising, indicating that he most likely will not need a transfusion this time around. The good news is his monocyte count is rising too, and as Dr. Gonzalez told us today, the monocytes are usually the first type of White Blood Cells to come back after his Nadir (or low point when all the white blood cells have bottomed out) is reached. So tonight, Mattie is being pumped up with fluids and antibiotics, all through Sparky. Several cultures are being run on Mattie's blood to try to figure out if the fever is being caused by an infection. We will know more tomorrow, but right now Mattie is on a general form of antibiotics, and if the culture results reveal a particular infection, then the antibiotics will be adjusted accordingly.

Needless to say we are in the hospital and probably will remain here at least until sunday. We have already been reunited with many of the nursing staff we had from our previous trip to the PICU. My goal is eventually to take pictures of each of these ladies, and then to describe them to you. These are remarkable ladies. So remarkable that when Dr. Toretsky asked if I would write to the nursing supervisor to let her know my thoughts about the nursing care, I jumped at the opportunity. Apparently the nursing staff was so touched by my note to their supervisor, that they cried. This was reported to me by one of the medical residents today. The residents and I have a standing joke, we are in a competition to see who spends more time at Georgetown this year. I am just kidding with them, but the residents too are fine and dedicated women, and in the midst of what we are dealing with, I wonder how they have the stamina to do this kind of work and keep the amazingly long hours they perform.

On a positive and upbeat note, I am focusing on trying to work with Carrie on developing an osteosarcoma walk. I think this is a fabulous fundraising idea, a way to educate others about the disease, and also a wonderful way to keep Mattie motivated by having a fun event to look forward to. I have already asked Bob Weiman, if SSSAS can help us with this event. But my ultimate goal is to get all our communities involved: Lombardi Center, SSSAS, RCC, and GW. Dr. Shad, The Lombardi Center Director, and I have communicated about this idea too, and she has been very encouraging and helpful to us, and wants to help us make this a reality. I realize how much all of you are doing for us already, of which I am very grateful. But it is my request that you will consider coming together and helping Carrie and I plan this event. It means a lot to me. I am targetting October, since this will be before Mattie's surgeries. If participating in the creation of the walk interests you, please e-mail Carrie at cebarone@gwu.edu. Thanks for your consideration!

On a final note, Julie Frye came to visit us at the hospital tonight and brought us some very tasty pizza, fruit, and a vanilla shake (for Mattie!). Thank you Julie for the food and for chatting tonight. JP, thank you for taking care of our handful of a kitty, and thank you Mary D. and Danelle F. for the beautiful PJs for Mattie. He is wearing a pair tonight and he is very cozy. They are the cutiest jammies! It is 12:15am here, and we are all still up. Hard to sleep, but we are planning on shutting off the lights soon. We did a round of Battleship and Candyland (thanks Linda!), and we are getting a kick out of Mattie as he is finding it funny that he can pull clumps of hair out of his head now (since the process of losing his hair is beginning). Of course if this was me, I would be mortified, but this is the beauty of a six year old! Mattie can find humor even in the most unpleasant things. Makes me wonder, why do we lose this skill as adults? Good night and God bless you and my Mattie!