Thursday, July 9, 2009

Thursday, July 9, 2009

Quote of the day: "What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others." ~ Pericles

Mattie shocked me last night. He went to sleep at 10:30pm. I decided to also go to sleep at that hour, but it wasn't easy for me, since I am used to staying up until 1am or later. Mattie was up at 4am, 6am, and then finally got up at 8:30am. As much as his bedtime hour surprised me, how he greeted me this morning truly caught me off guard. I had just gotten out of the shower, and I heard rustling in Mattie's room, and before I knew it, he managed to slide on his rump to his bedroom door and open it. We both startled each other and then laughed. I made a big deal out of his initiative and he felt very proud. Though I felt I needed to ask him if he would have done this if he was connected to his IV, and he said NO, which was the right answer. I learned my lesson early on the hard way. I left Mattie unattended one morning connected to an IV, and the next moment I checked on him, his line was filled with blood. I was in a panic, because I did not know if he was bleeding, pulled the central line out of his chest, or what. So now if I leave him unsupervised, it is always without an IV attached.

Mattie and I arrived at Georgetown Hospital at 11:20am, for his 11:30am cardiology appointment. Needless to say we did not get home until 5pm. Another long day in the hospital for us! Linda met us in the cardiology department and helped me throughout the entire process. I am not sure where I would be without Linda (Georgetown's Childlife Specialist). I am not just saying this, I truly mean it very seriously. Linda has helped me under the worst of circumstances, and she isn't only a calming factor in Mattie's life, but I fully admit, Linda is important for me as well. Without Linda, I would be going through scans, testing, and other daunting procedures on Mattie alone. I can assure you it is frightening to do any of this, and now as we are off active treatment, this process is almost terrifying. Mattie did quite well through the EKG and Echocardiogram. The techs were lovely and they had Sponge Bob playing in the background, so Mattie was glued to this yellow creature. The problems arose once the testing was complete. The tech told Mattie he could get up, but his shirt on, and could go back into his wheelchair. Big mistake. The next thing we knew the cardiologist came into the room, and told Mattie she wanted to speak with me privately and then would come back to examine him. I told her she should examine him first so that he could go back to the Lombardi Clinic with Linda and play. I am sure I caught the doctor off guard. Most medical doctors don't like to be directed by their patients or the patient's family. She did agree to examine Mattie first, but wanted him to take off his shirt and get back up on the exam table. Now you have to understand getting a shirt on Mattie isn't easy with all of his surgical sites, and I had just lifted him back into the wheelchair. So when she told us this, I just looked at her, and I basically said she had to be kidding. I am sure I was labeled as the problem MOM of the day, but I frankly did not care. Her whole demeanor with Mattie was gruff and insensitive. Though I find most people in a hospital setting have very little knowledge of how to work with kids who have had limb salvaging surgeries. It is almost as if this is either so rare, or simply not discussed in one's medical training. Any case, the doctor agreed to examine Mattie in his wheelchair and with his shirt on after I barked at her. Mattie did not like the exam, but when she started pressing on his stomach, he lost it, and I never got him back at that point! He kicked and punched the doctor. Many of the behaviors I remember Mattie doing as a toddler have resurfaced, which isn't surprising since under times of crisis, we go back to our familiar behavioral patterns. Those patterns for Mattie involve no verbal communications, and simply acting out and expressing emotions with his body.

After the exam was over, Mattie refused to leave my side. He wouldn't go down to the clinic with Linda, and in fact he told Linda to leave. I felt bad for Linda, and then I felt bad for myself and Mattie. It wasn't a pretty picture. We spent at least 20 minutes rationalizing with Mattie. I had to meet with the cardiologist to give her a history and to discuss the results, but Mattie refused to leave me. So I had no other choice but to take him into the meeting with me. So Mattie heard the results of the testing, but was quiet throughout the meeting. In essence the cardiologist told me that Mattie's results were similar to the ones presented in June. Specifically, Mattie's shortening fraction (a way of measuring left ventricle performance. Instead of measuring and ratio-ing blood volumes, the shortening fraction measures and ratios the change in the diameter of the left ventricle between the contracted and relaxed states) and ejection fraction (measures how the left ventricle, a chamber in the heart, relaxes to fill with blood and then contracts to pump the blood out) have decreased in function. So she labels him as having heart dysfunction, as a result of the toxicity of the chemotherapy Mattie received. The cardiologist is opposed to giving Mattie more Doxorubicin next week. Doxorubicin is a chemotherapy Mattie had over the course of the last 11 months, and it is very cardiotoxic clearly. However, Mattie hasn't received his lifetime dosage of this drug, and therefore it was decided before today's testing that two more dosages of this drug would be beneficial for Mattie. However, today, I was crushed to hear the cardiologist's recommendation, because Peter and I both feel that more chemotherapy is necessary to potentially kill any dislodged tumor cells that may have occurred during Mattie's sternotomy. As you know, three of Mattie's lung lesions were viable tumors. In addition, the cardiologist explained that this damage to the heart is most likely permanent, and this dysfunction could continue to get worse over time. The cardiologist talked with me about Zinecard, which is a heart protector drug that is sometimes given to patients before receiving high dosages of Doxorubicin. Some of you may remember that I pursued this drug for Mattie, but Georgetown kept telling me it was in a national shortage, and Mattie really did not need it because the toxicity of Doxorubicin he would be receiving wasn't that high. However, as his mom, I can't help but think that I shouldn't have settled for this answer. I should have demanded they find the drug. Yet the catch is if I waited for the drug to be located, then this would have held off Mattie's chemotherapy treatment. Damned if you do, damned if you don't, because we know he wouldn't be here today without chemotherapy. I can't look back on this decision, I have to trust that this drug was indeed not available as was told to me, and that it was the right decision to start treatment as soon as possible. But a part of me wonders, if he got Zinecard, would we still see these heart dysfunctions today?

Mattie and I then headed to the Lombardi Clinic after this appointment. I decided to take Mattie to clinic for two hours, because it made no sense to run home, just to come back for a physical therapy appointment. The clinic was an absolute zoo today. Jenny was away, and Jessie was there and working with eight children at one time. At one point, I looked over at Jessie, and all the kids wanted something from her at the same time, and yet she remained calm, helpful, and always professional. In all reality a TV crew should have been in the clinic, because this would have been a perfect clip for a Tylenol commercial. How Jessie managed all of this without developing a headache by the end of the day is a miracle. Jessie helped Mattie, despite being pulled in a thousand directions. They designed a box for the rubber frogs that Linda gave Mattie earlier in the day. In fact, they made a beautiful pond out of a cardboard box along with lily pads. While Mattie was working on this, I had the opportunity to speak to a mom I haven't seen in a long time. Her daughter is an osteosarcoma survivor. However, while I was talking to her about Mattie's condition and the additional concerns we now have about him, she happened to say to me, when do I think enough is enough?! Meaning how much more will I put Mattie threw. I guess this caught me off guard, because I assume all parents with kids who have osteosarcoma are going to fight until the bitter end. If something can be done, you do it. Any case, her comments stayed with me all day. In fact, Ann called me when I was in clinic and I guess I must not have sounded like myself, and she was concerned.

I guess what I am learning by all of this, is I feel incredibly stuck. My life will never be normal. I will continue to live my life making life and death decisions for Mattie, in hopes of saving his life, or giving him a chance at it at least. But what happens if all of this is for naught? How do you keep on living without your child? I don't have an answer for this, other than now I know I am profoundly sad and deeply impacted by Mattie's illness. This illness has absorbed me, and nothing I do really can allow me the chance to forget about it. I am drowning in all sorts of emotions, that I can't particularly express it too well tonight. I did write to Dr. Kristen Synder today, Mattie's oncologist, who is on vacation. But Kristen responded right back. We talked about the cardiology results and she also told me that no one can judge the decisions we make. What truly touched me is she said, "but it is only after we have walked a mile in your shoes that we can even suggest we know how you feel. And, Vicki, in this case, a mile just isn't long enough to even remotely comprehend what you are going through." Kristen isn't only a competent doctor, but a doctor with a heart and great understanding. Which is why I can't say good-bye to her as she leaves Georgetown full-time.

Mattie had another productive physical therapy session today. Linda joined us for part of it, and helped me take pictures and also participated in a scooter race with Mattie. Normally I try to play an active role in therapy, but Anna can see my back hurts. Anna and Catherine, our case manager, are on top of the wheelchair issue, and tomorrow our in home supplier is coming to take back Mattie's current chair and are giving me a lighter chair. We shall see what this looks like. I think the photos from today's session, will give you an idea for what was achieved.

Left: Linda got into the tube that Mattie was throwing balls into and snapped a picture. You can see that Anna has Mattie sitting on a structure that forces him to put weight on both feet, so he has to balance himself.

Right: Mattie and Linda racing. It was a right foot race only. So it was "Steve" vs. "Froggy" (Linda's right foot).

Left: Mattie working hard to get around one of the cones in the obstacle course.

Right: Mattie foot painting! Mattie LOVED IT!

Left: Mattie decided to paint Anna's mirror with his feet, which is fine, because it gives Mattie the opportunity to stretch his legs and build up strength.

Right: Mattie holding up his behavioral chart. He was successful and did everything he was asked to do this week! You can see the stickers for each day of work.

Left: Mattie's well sought after prize. He has wanted this ball all week, which Denise, his social worker, was holding for him! He already knows what he wants to work toward for next week. Excellent.

On the car trip home, Mattie fell asleep in the car, which is excellent. That means to me that he was working hard with Anna. I did not let him sleep for more than 15 minutes, and then woke him up. We want to thank the Murphy family for a wonderful picnic dinner. Mattie loved the pasta, broccoli, and watermelon. He actually ate quite well. I am a fresh vegetable fan, so I appreciate all the wonderful farm fresh vegetables! Thank you Elizabeth for the lovely gift as well. I will happily use the the green tea lotion and soap. Thank you for thinking of me and your continual support of my family.

After dinner, Peter took Mattie out for another walk. They walked by the water and I hear they saw a mother duck and her ducklings. Mattie and I have a wonderful story about a mother duck and her ducklings who we saved about two years ago in a storm drain. I always wanted to develop a children's story out of it, and perhaps one of these days Mattie and I will do this together. He reminded me of our duck rescue tonight! I am happy he can remember these special times together.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It sounds like Mattie is beginning to get into the idea and routine of physical therapy. I know you are happy about that because cooperation is so critical to getting well. I hope you can find an appropriate lightweight wheelchair to use until Mattie is ambulatory again. Lugging a heavy chair around, especially in and out of a vehicle is awkward and oftentimes leads to an injury for the helping person. However, the thing I wish most for you right now is the re-creation of family routines (meals, walks, bedtimes, etc) and Mattie's acceptance of the need and respect for those. I know that once that happens, the start of healing emotional wounds will not be too far behind."