Tuesday, June 9, 2009

Tuesday, June 9, 2009

Quote of the day: "One day at a time--this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering." ~ Anonymous

I have observed a pattern in Mattie's bedtime routine. Over the course of the last week, Mattie wants to see a video with me before he goes to bed. The bedtime video series he is into now is Veggie Tales. Basically if you haven't seen these videos, it features vegetables that talk and tell meaningful stories with moral values. Sometimes the stories are based upon passages from the Bible. In any case, Mattie is glued to these stories and after we watch the videos we try to apply them to his life. Yes even at midnight! However, like clock work, after the video is over, Mattie lets me know that he "doesn't feel like himself." This is his code word for pain and that he can't shut off. Dr. Gonzalez and I have talked about Mattie's nighttime routine, and I completely agree with her assessment. He needs just a little bit of morphine to shut his system off for the night. Like a tranquilizer. I am pleased to say that Mattie doesn't need morphine at any other point in the day, so I view this as major progress! Since a week or so ago, he was taking morphine every two to four hours!

Typically I have to wake Mattie up in the morning, but this morning after I got out of the shower, I could hear something clicking outside my door. I couldn't place the sound. When I opened the door, and peeked into Mattie's room, he was sitting on his bed and playing with cars. Cars that he clearly retrieved on his own, by somehow standing up and walking for them. I was stunned. I commended him for his efforts and he continued to play by himself while I finished getting ready. That was a major first!

I ran around this morning packing lunches, getting Mattie ready for the clinic, and somehow just trying to get out of the door in one piece is a major feat. The day we say goodbye to this wheelchair, I am throwing a party! After lugging this chair around for the past eight months, I can safely say I have had it! In fact, Peter and I are looking into other alternatives, because I may need physical therapy after all this is over.

Mattie arrived in clinic at 11:45am and to put things into perspective, we did not get home until 7pm. So it was a full day in the Lombardi Clinic. However, for the most part, Mattie had a VERY full and exciting day there. Mattie had the good fortune of playing with Jocelyn (who is a young adult with osteosarcoma). Jocelyn was in clinic today for MTP-PE as well. Jocelyn and Mattie share a disease and an orthopedic surgeon, Dr. Bob. Jocelyn was wonderful with Mattie today, and she talked with him about the difficult times she had with physical therapy and other issues. I am so happy Mattie has the opportunity to build a friendship with Jocelyn. Jocelyn has a positive attitude about her illness, and her concern for Mattie is heartwarming.

In this picture you can see Mattie playing with Jessie (left, one of Mattie's art therapists) and Jocelyn (right). Mattie continued his swimming pool project, and designed snakes out of model magic to inhabit his pool. The red snake he is holding is a cyclopes snake. It had one huge eye and quite a tongue. Mattie was inspired to make snakes today, because he brought in a picture of "Sunshine" (the albino python from his birthday party) into clinic. He creeped all of us out with his snake stories, everyone except for Jey (his hospital big brother), who came to visit Mattie in clinic.


At around lunch time, Mattie challenged Jessie to a race around the clinic. Jessie first did a race on foot, and then decided to jump in a wheelchair herself and have a wheelchair race. Needless to say Mattie won all the races, but it was great to see him move his feet and expend physical energy.

In addition, to having Jessie and Jocelyn in his life today, Mattie also had another special visitor. Brandon! Brandon text messaged me to find out how long we were going to be in clinic today, because he and his mom, Toni, wanted to come up and visit with us before Mattie's surgery on Monday. I was truly touched by their thoughtfulness. Mattie and Brandon PLAYED for hours. In fact, Brandon and Jocelyn even joined in during Mattie's play therapy session with Dr. Matt Biel (Mattie's psychiatrist). I enjoyed talking with Toni and I miss these opportunities that we used to have together when Mattie and Brandon were on similar chemo schedules.

The play therapy session built upon last week's session. Mattie again was the competent and world renowned surgeon. Jocelyn played Mattie's assistant, and Jessie and Dr. Biel, I believe played the patient's parents. Brandon played the patient. They were quite a great team. In the pictures below you will see Mattie performing emergency surgery on a skeleton. He did lung, brain, and even limb salvaging surgery! Throughout the play therapy they discussed the activities Mattie would be able to do post lung surgery. In addition, they talked about breathing exercises he would have to do post surgery as well.

Left: Pictured left to right is Brandon, Dr. Biel, Jocelyn, Mattie, Denise (Mattie's social worker), and Jessie

Right: Dr. Mattie busy at work!

Left: Dr. Mattie performed brain surgery on the skeleton. Mattie came up with a new technique during the surgical process. It is called washing the brains. You can see the model magic brains with feathers on them floating in water. What an imagination.

Right: After the play session, Mattie, Brandon, and Jocelyn continued playing. I can't thank them enough for stimulating Mattie today. They were wonderful. If you look at this picture you will see that they created model magic Sponge Bob characters. The irony is I never allowed Mattie to watch Sponge Bob until last week when he was in clinic and there was a Sponge Bob marathon on TV. He was having a MTP reaction at the time and needed something to take his mind off of it. Apparently Sponge Bob did the trick. So today, Mattie created Sponge Bob, Brandon created Patrick the starfish, and Jocelyn created a pineapple (Sponge Bob's home). In the picture you can see Toni (behind Brandon), Brandon, Mattie, and Jocelyn. You will notice in this picture that Jocelyn took her wig off. I think Mattie really appreciates that she does this, and makes him feel in good company.

During the fun play session, Mattie was receiving MTP-PE. Around 90 minutes post infusion, Mattie started to get the chills and became tired. So I brought him into a clinic room and jumped into bed with him. He developed a fever, and Dr. Gonzalez examined him and assessed that he needed more Tylenol and Morphine. While Mattie was asleep on my shoulder, Dr. Gonzalez came in to talk with me. She told me how other HEM/ONC parents talk to her about me and what Mattie is going through. Apparently Mattie's situation has pulled on their heart strings too. But what truly caught my attention was Dr. Gonzalez said in her own way that she doesn't know how I do what I do. She says it is hard enough for her to watch us go through this as a physician, but being a parent and having to deal with Mattie's situation makes it much more difficult. I appreciated her candor, honesty, and empathy. I appreciate all positive comments about my caregiving abilities, mainly because it is a difficult, challenging, and a depressing role to fulfill most days.

Mattie and I arrived home at 7pm, and Peter came home some time there after. We want to thank the Doane family for a wonderful and generous dinner. Mattie loved the grilled cheese and actually ate it! Thanks for the cheesecakes too! Mary, I also appreciated the humorous story you shared with me today. Humor is indeed good medicine!

Mattie is now back to drinking milk! This is wonderful news. He experimented with these goggles he received as a birthday gift. Peter and I were laughing hysterically, because the milk filled up the glasses, so that we couldn't even see Mattie's eyes!

Tonight, Ann and I chatted about our day, and our conversations can go from seriousness to laughter in minutes. I think one thing has become very clear to me over the course of Mattie's 11 month battle, and that is I am blessed with the best of friends. People who are willing to arrange their lives just to make our days smoother or happier and of course those of you who write daily and always have a positive comment to share. I feel the need though to acknowledge Ann in particular. She is an amazing Team Mattie coordinator. However, through our working together toward Mattie's wellness, I have in turn received the blessing of a beautiful friendship. There are days I am not sure where I would be without Ann, and I am just so fortunate that God brought us together and inspired me to send Mattie to Resurrection Children's Center (where I first met Ann).

I would like to end tonight's posting with two messages I received today. The first one is from my friend, Charlie. Charlie wrote, "This is definitely going to be a challenging week with all the tests Mattie has to have pre-surgery. I do think you are right not to get overly upset about the auditory exam; first, the critical issue is being able to hear and respond to speech which Mattie can clearly do. The second thing is that auditory exams are not entirely objective. They are impacted by the patient's willingness to participate, his focus, extraneous issues and often the relationship with the tester. I am not entirely convinced this was an accurate test of Mattie's hearing. The positive side is that the actual condition tends to be better than what you get on the test especially if the tester or the testee is not in the best frame of mind. Once again your blog is a gift to all of us who read it. Thank you for the reminder to take hold of the present and do the important things like hugging your child, telling someone you love them, reaching out and communicating with someone important that you've let go. The best time for showing love and care is now, even if it doesn't seem like it. Waiting for the "perfect time" is dangerous; it may never arrive."


The second message is from my friend, Mary M. Mary wrote, “When Bad Things Happen to Good People” by Rabbi Harold S. Kushner is a book I read many years ago. Rabbi Harold Kushner is one of my favorite authors and I am Catholic, not Jewish. Dr. Kushner also suffered greatly by the loss of his son Aaron to Progeria, a debilitating disease that doomed him to die as an adolescent. I think this book helps to give comfort to people suffering as you are right now. It is not a book expounding any particular religious persuasion. It’s a book that tries to make sense of the question, “Why is this happening to me?”

These are just a few of the excerpts from the book “When Bad Things Happen to Good People,” that I found thought provoking and comforting. It was hard to decide which excerpts to pick, as there are so many to choose from. If you haven’t read this already, I hope that this book may comfort you. Excerpts from the book:

“I don’t know why one person gets sick and another does not, but I can only assume that some natural laws, which we don’t understand are at work. I cannot believe that God “sends” illness to specific person for a specific reason. I don’t believe in a God that has a weekly quota of malignant tumors to distribute and consults his computer to find out who deserves one most or who can handle it best. “What did I do to deserve this? is an understandable outcry from a sick and suffering person, but it is really the wrong question. Being sick or being healthy is not a matter of what God decides that we deserve. The better question is “if this has happened to me, what do I do now, and who is there to help me do it?”

Mary also wrote, "I've been thinking of you all afternoon, as you sit in the hospital on your "free week," and I'm thinking about "one more thing" that Rabbi Kushner said that was important to tell people who are experiencing what you are going through." He says people need to hear:
"This is really lousy, it shouldn't have happened to you, and you do not deserve this terrible thing that has befallen your family! He says that people need to hear this because when something so tragic happens to them they tend to think they deserve it somehow, for not being "good enough" or that they did something at some point that they are getting paid back for now. It's irrational, but it's the way we think under such stressful circumstances."