Quote of the day:
"I value the friend who for me finds time on his calendar, but I cherish thefriend who for me does not consult his calendar." ~ Robert Brault
Charlie wrote, "This seems to reflect the sentiment of the blog; all about time and friendship. Passage of time is such a subjective thing; there are points at which it almost seems to stop and others where we say it flies. And then there are the points where one lives outside of time as others know it. This is where you and Pete seem to be. He has more of an anchor to the daily routine with work but evenfor him the connection is clearly fragile. It is nice to read how people leave their routines or work to connect and spend time with you and/or Mattie. As I said before, the gift of someone's time, truly and completely given is something to be treasured! You've often given that to your students (I was the recipient on more than one occasion) and it is wonderful to see it returned!"
Mattie woke up several times on Monday night to use the bathroom. He is receiving a large quantity of fluids for hydration, so his necessity to jump up every two hours is understandable. But it makes for a very restless night of sleep. This hydration is necessary because Mattie is receiving a fairly high concentration of Etoposide and Ifosfamide, and Ifosfamide in particular needs to be flushed out of the system otherwise it can damage the bladder. Peter did most of the jumping up and down last night with Mattie, which was great for me, but not so good for Peter. Fortunately though Peter was checking on Mattie periodically because he noticed at one point during the night that Mattie’s hydration stopped. Nothing was going through the IV. Peter immediately called the nurse who looked shocked by this news. We have no idea how long Mattie wasn’t receiving fluids for, but I was so happy that Peter caught this problem.
Mattie woke up today in a bad mood. He was grumpy, wasn’t communicating, and worst of all, he told me constantly that he was bored and did not know how to occupy himself. Not the best of circumstances for me to deal with. The one consolation was Tricia was our nurse. Every time Tricia is our nurse, she always starts my day off with a cup of hot tea. It is these simple acts of kindness that mean so much! Mattie bounced around several times today from his room to the childlife playroom. Literally so many times that I lost track. It must have been like watching a tennis match for the nurses. We just kept going back and forth, as if he couldn’t get comfortable being in either place ALL day. We did start off the day in the childlife playroom. Mattie decided to play a board game with me, one I had never heard of. It was about skiing. I was at a total disadvantage, I don’t ski and I never played the game. So it took me a while to figure it out. Even then, the game was frustrating which only further agitated Mattie. While we were playing Julia (a friend and RCC mom) and her daughter, Jaimie visited us. They brought a wonderful lunch and Mattie finished an entire vanilla shake today and all of his chicken. This was excellent news. Thank you Julia for lunch, the fantastic chocolate, and the visit!
Our next visitor to the playroom was Jey. Jey is a CT tech, but better known as Mattie’s ‘big brother.’ Jey helped me downstairs to the clinic. I decided to take Mattie downstairs to the Lombardi Clinic to meet up with Jenny and Jessie for a change of scenery. Jey pushed both Mattie’s wheelchair and the IV pole for me. Which was very thoughtful of him. Jey understands Mattie’s moods and doesn’t get upset or flustered by them.
While Mattie was in the clinic, I ran back up to the PICU to pick up my lunch and bring it to the clinic. While I was in Mattie’s room, Dr. Toretsky came to visit us. He walked downstairs with me to the clinic, and while I had lunch he sat and talked with me. We talked about Mattie’s treatment, the issues I see with Mattie’s left arm and leg, and we also talked about the future. Though we are nowhere close to completion with Mattie’s treatment, I am beginning to see a frightening future ahead. It is a future of constant scans, and waiting on pins and needles for test results. To some extent being hooked up to chemo makes you feel safe. It is safe because you know you are actively fighting the disease. But what happens when the chemo is finished? How do we protect Mattie? It is a question that parents of a child with cancer must ask themselves day in and day out. I just keep telling myself that we learned to deal with our current situation so to some extent I am sure this will be another stage of the coping and adjustment process we will make, but I also know it won’t be easy. It really hit me today, that on July 23, 2008, when Mattie was diagnosed with Osteosarcoma that this was a life-altering day. It signifies the day in which cancer was brought into our lives forever.
Mattie had a good time creating with Jenny and Jessie. Jenny and Jessie have made it their business to locate all available cardboard boxes in the hospital. They know this is one of Mattie’s favorite pass times, painting on a box! After the clinic, we came back upstairs, and Mattie again bounced back and forth to the playroom and his room. He played with Meg for a while and even Mary, a hospital volunteer. But all of his play was short lived. Meg even allowed Mattie to play with a new science kit that came in. The kit contains a microscope and Mattie got to examine insects under the microscope. His favorite! Mattie did some great art projects in the childlife playroom today. He painted a lot of wonderful pictures, such as a fruit scene, a pumpkin, an “abstract” as he calls it, and a landscape scene featuring a round red house. All of these masterpieces are now taped to Mattie’s hospital door and you can see them in the picture below! In addition, Meg helped Mattie make colorful buttons, the type that you can pin onto a shirt. Mattie literally made six buttons and pinned them to his pjs. He also made a button for Peter, myself, and Meg. Then he made two buttons for Linda. Linda is coming back to work on Wednesday after being on leave for a family emergency. We have missed Linda tremendously! I have a feeling Linda will get a kick out of the buttons. One button has a cockroach on it (Mattie’s bug of choice these days) and the other button is pretty, and says “Lovely Linda” on it with a butterfly.
At around 4:30pm, Mattie developed a massive headache and then started to feel nauseous. I took him back to his room, and Tricia (one of Mattie’s favorite nurses) administered him Vistaril. Literally this antihistamine is the miracle drug for Mattie. He has been sleeping soundly since around 6pm. I think today he was wiped out but just couldn’t shut down. It would explain his moodiness, edginess, and in ability to focus on anything.
When Peter got to the hospital tonight, Mattie was already sleeping. I had all the best intentions of writing the blog in peace and then being able to relax. But that wasn’t in the cards for me. I literally went to every location on campus and I couldn’t get my laptop connected to the Internet. This made me a VERY frustrated person. Fortunately the PICU staff allowed us on the computer long enough to post a message on our blog that there wouldn’t be a posting on Tuesday night. I have yet to miss one blog posting since Mattie got sick, and I was livid today that Georgetown’s guest system went down. The irony is the tech folks at Georgetown weren’t even aware of this when Peter called. Fortunately Peter is technologically savvy and straightened this tech person out over the phone, because the tech person was saying the problem was on our end with our computer. Needless to say, this better be corrected by tomorrow. The PICU is full of very upset parents tonight! For many of us, the computer is our connection to the outside world, and with no Internet it further exacerbates an already difficult situation.
The one silver lining in all of this is that Ellen is our nurse tonight. Ellen is a fabulous HEM/ONC nurse and we haven’t seen her in a while. In addition, Mattie has slept through both the infusions of Etoposide and Ifosfamide. So hopefully this will be the start of a good night for us. As we head into Wednesday, I just hope that Mattie wakes up in a happier mood. I felt like he thoroughly wore me out today and we have three more days of infusions to go!
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