Monday, February 23, 2009

Monday, February 23, 2009

Quote of the day: "Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom." ~ Marcel Proust

Sunday night, Mattie went to bed early. It was unheard of, by 7:30pm he was in bed and sleeping. So I decided at 9:30pm that I too would go to bed. But I had a lot on my mind, and I just was unable to sleep. I tossed back and forth, got up to watch TV, but nothing seemed to help. I eventually went to bed after 1am. When I finally fell asleep, it did not last long, because Mattie was having a bad dream. He sat up and I asked him if he was okay. He said, "no I am not." So I got up off the mattress, which is on the floor in his room, to come sit with him. He eventually went back to bed.

When Mattie woke up this morning I prepared him for his long day in the clinic. He wasn't pleased by that notion, but I told him he did not have to sleep in the hospital at least and I also told him he would be seeing Jenny and Jessie. That perked him up. Mattie cooperated with getting himself dressed and cleaned up, which doesn't always happen. Mattie still needs a great deal of help with activities of daily living. He can't dress himself, go to the bathroom unassisted, and so forth.

We arrived in clinic around 11:30am and did not get home until 5pm. It was a long day, but Jenny and Jessie did a phenomenal job keeping Mattie busy. Mattie had his vitals taken and his blood work. His ANC is 400 today, so it is climbing. Mattie received MTP-PE with no trouble, and he also received Granulocyte colony-stimulating factor (GCSF) to boost the production of white blood cells. In the midst of all these administrations, I had the opportunity to discuss Mattie's treatment with Dr. Synder. I talked through my concerns with her about the timing of Mattie's next chemo, Methotrexate. Dr. Toretsky is recommending that we start chemo on thursday of this week, if Mattie's counts bounce back up. Dr. Toretsky says that research shows a strong correlation between adhering to an intense chemo regimen and longer survival rates. I am completely torn with this decision. My mental health professional side feels that it is important to wait until monday. Mattie needs time at home, time to feel somewhat normal, and all of us need time to regroup and get ready for the next battle. We also do not like being in the hospital over the weekend when Linda, Jenny, and Jessie are not around. Mattie really counts on them. However, the mom side of me looks at this differently. Once you hear that there could be a potential benefit to your child by starting chemo sooner, it is hard to shake that news. It has been spinning around in my head all night and day. I never want to look back on this cancer journey with regret. We have tried to make sound and educated decisions every step of the way. Though it seems illogical that three days will make that big of a difference, you lose some perspective and logic when living this process. All you can really hear as a parent is that doing chemo sooner could make a difference. How do you tune out such information? Well I can't!

So after talking with Dr. Synder, and reading what Dr. Toretsky sent me, I told Peter I feel compelled to start Methotrexate on thursday if Mattie meets his counts. Mattie returns to the hospital for an audiogram on wednesday, and we will stop by the clinic first to check his blood counts. If his ANC is 1500 or higher, then we know that he qualifies for Methotrexate on thursday. As Dr. Synder explained, some cancers are very aggressive, like Mattie's, and the literature does indicate that bombing the body out with chemotherapy in very close intervals can give a patient a longer survival rate. Do I actually believe this? I don't know, but am I willing to try our luck and find out, no! So as Dr. Synder says, Mattie's body will dictate the next steps. If his body is ready for thursday, we will proceed.

While I was chatting with Dr. Synder, Mattie was engaged in a very creative and lively play scenario with Jenny. In fact, Jenny and Mattie played very intensely for three + hours. Jenny did not skip a beat, or tire out. Jenny and Jessie found an enormous cardboard box for Mattie, and so today, he created a large trash shoot out of it. In addition, he created a little basket attached to a string, that could be sent down the trash shoot, almost like a bucket in a well. Throughout their play, I was overhearing bits and pieces of it. It involved a family which consisted of a mom, dad, son, and a daughter. The daughter's name was Pinky. Pinky was a very challenging child. She had many oppositional defiant issues (frequent temper tantrums, excessive arguing with adults, active defiance and refusal to comply with adult requests and rules, deliberate attempts to annoy or upset people, blaming others for his or her mistakes or misbehavior, often being touchy or easily annoyed by others, frequent anger and resentment,
mean and hateful talking when upset). Mind you Pinky's character was created by Mattie, and Jenny was playing along. At one point, Mattie had Jenny playing about 10 different characters in the story. It was wonderful to listen to, and Jenny rose to the challenge of playing all these different characters. The family tried everything to get Pinky to be a productive and happy part of the family, but Pinky wouldn't comply and just got more difficult. Pinky loved jumping into the basket and sliding down the trash shoot, just to see her family worry and get upset. At one point, Mattie, with the help of Jessie, designed a barbed wire bedroom for Pinky. The family hired all sorts of nannies and helpers to work on the family's problems and to give the parents a break with child rearing. I took a picture of one of the nannies. Her name was Nanny Nothing. Nanny Nothing was a no nonsense kind of gal, but Pinky landed up cutting off her foot. Pinky spent her days getting in trouble. Needless to say I found the aggressive theme of today's play fascinating. At one point, Mattie was ready to move away from playing with Pinky and this whole family scenario was unresolved. Somehow, though Jenny and I did not discuss this, both of us felt like this wasn't a good way to end the story.

At this point, I joined Jenny, Jessie, and Mattie while they were playing. I created the character, Dr. Paintbrush. I figured this family needed outside intervention, and they tried everything else, and an outside perspecive was needed. So Dr. Paintbrush spoke with Pinky. Together they set some ground rules about what type of behavior was expected in her household, and that she could turn to a diary or log when she felt herself getting frustrated, angry, or unhappy (Pinky did like to write and liked school). Dr. Paintbrush also told Pinky that she wanted to visit Pinky's home. So the next day Dr. Paintbrush visits the home and sees that Pinky is living in a prison like environment (because the parents were at their wits end) and also observed Pinky getting herself into trouble right in front of the doctor. At which point, Mattie takes over the role of Dr. Paintbrush. Dr. Paintbrush starts acting out, hitting everyone in the family, and talking back. Jenny, Jessie, and I were trying to figure out what to do next. Then it hit me. I took on the role of Pinky. Pinky turns to Dr. Paintbrush and says something like, "is this how I look when I act out?" Whether Mattie realizes it or not, he was showing Pinky how bad her behavior was, and how ridiculous it was, and that she could control how she reacts to things. It was in that instance that the play scenario changed. It changed for the better and for the healthy. Pinky did not want to look or act like what she saw Dr. Paintbrush doing. The family started listening to each other, and Dr. Paintbrush threw out the barbed wired bed and all the other forms of punishment used on Pinky. I personally felt like today's play was VERY therapeutic. I think we showed Mattie that no matter how bad things get within a family for various reasons, families do not give up on each other. Brava Jenny and Jessie!

Since we were in the clinic for some time today, Mattie had a visit from Linda, Jeff (our HEM/ONC nurse manager), Toby (the PICU nurse manager), Meg (Linda's intern), and Denise (Mattie's social worker). Mattie also worked with Jessie on finding the right place in the clinic to hang up the huge cockroach ceiling tile he painted. He was thrilled. He now has two ceiling tiles in the clinic. He has left his mark! At around 4:30pm, we packed up for home. We got on the hospital elevator to go to the parking garage. All the elevators for people with disabilities were not working, and we had no way to get to the garage. So I went back into the hospital to report the problem, which they knew about, but there is no one on campus who can fix this problem. So literally I had to wheel Mattie down seven floors within the parking garage, making sure we did not get hit by a car on each ramp. It wasn't the best ending of the day.

When we got home, Mattie and I played a Scooby Doo DVD game, and then Peter came home earlier today. Peter realizes I am wiped out and wanted to help out tonight, though he is just as tired. At the moment, Mattie and Peter and building a lego set, that will be added to the train village. We want to thank the Parker family for a lovely dinner and we love the St. Patrick's day hat! Mattie will wear his with pride, and I did not know that you could get pinched on St. Patrick's day if you don't wear green!

As I sign off for the night, I want to share three e-mails with you. The first one is from my friend, Charlie. Charlie wrote, "So glad to hear that you got to go home even though challenges clearly await. It sounds like Mattie had a good, if exhausting day, getting to visit with people (and animals) he enjoys. It was lovely that Louise was able to come and entertain Mattie and give you some time with Pete even if you were too tired to really enjoy it. I know you are not looking forward to your visit to the hospital on Monday and Thursday for the infusions but at least you will get to leave at the end of the day and go home. I do hope Mattie feels well enough between those days to see his friends and enjoy being with them. As for the next round of chemo, I find it hard to believe that Thursday versus Monday will make that much difference and there is also the issue of Mattie's attitude toward it all. I believe the better he feels the more efficient his body is at fighting the disease. However, whatever decision you make will be the "right" one-have faith in your "mom" instincts."

The second e-mail is from Julia (a friend and RCC mom). Julia and her daughter Kate (who was in Mattie's first preschool class at RCC) came to visit us on sunday at the hospital. Unfortunately we were discharged from the hospital before we actually got to see them. Julia wrote, "Kate will show you her new haircut! She chopped 10 inches for Locks of Love. She was hoping she could hand her hair directly over to Mattie." I thought this was so sweet and touching that a friend would want to give her hair to Mattie!

The last e-mail comes from Debbie Pollak. Debbie is Mattie's art teacher at SSSAS. Debbie sent me a message with a comment she would write if she was evaluating Mattie as a current student in her class. Debbie wrote, "Mattie has the soul of an artist. He has a strong self-image that spues forth like a volcano when he has paints and a brush in his hand. Bright, bold color choices indicate his inner fortitude that could be envied by even the most powerful person in the world. His images are clear, well defined, and, meaningful. Mattie is happy when he is creating art which is evident by the sound of his precious laughter and the brilliant twinkling in his eyes. His work leaves me speechless, mystified and gloriously happy on the inside."