Quote of the day: "Friendship is a sheltering tree." ~ Samuel Taylor Coleridge
Before I highlight our day today, I would like to reflect on a conversation Peter and I had with Mattie on Sunday night after we got back from Ann's house. Clearly Mattie was processing his experience at Ann's during the drive home, and by the time he got home he appeared to be shutting down emotionally. When we asked him what was bothering him, we were blown away by his response. In a nutshell, Mattie told Peter and I that he is not like Abigail, he can't walk, run, jump, and do many of the other things she can do. He then told us that he couldn't do anything for himself, and then refused to help himself in any way last night. It was like he was regressing back to his baby days (which of course happens to any of us during trauma and times of stress), where he wanted us to do everything for him. Certainly due to the nature of his disability, we do have to do many things for him, but there are certainly other things that he can do independently. When we asked him what was going on, he responded that he can't do these things because he is SICK! It was at that point I told him that it is true he WAS sick, but that he did an excellent job fighting the "bone bugs" and that every known bone bug in his body has now been removed. So in essence he is NOT sick, but he is healing, and to heal means he needs to work hard and to also lighten up on himself as the process unfolds. I know that Mattie is very fond of Abigail, but it saddened me to hear him tell me that the only reason he went over to play with her on Sunday was to make her happy. Not unlike what occurred during his last two surgeries, I see Mattie trying to push people away and out of his life again. He is electing to be isolated, and I certainly can't blame him. None the less, as he self selects to be isolated, he is electing that lifestyle for me too. Somehow in the midst of balancing everything else I have going on with Mattie, being socially isolated only compounds our problems. In light of what transpired on Sunday, I am leery now to do things with other children. In fact, Ann has asked us to go away with her family this weekend, and of course I would like to, but then a part of me wonders if this is a good decision for Mattie? I have been debating this for two days now, and when I am in such a quandary I usually ask myself, why would I be going? Am I going for me and my needs or for Mattie's? Certainly it would be great if the two were aligned with each other, but I freely admit that they aren't. My number one priority has always been Mattie since he was born, and for the most part put his needs before mine, but at this point in time I feel so debilitated that if I don't start thinking about myself, I won't be able to be there for Mattie.
Mattie was up twice during the night (since he is receiving IV fluids), but basically slept soundly. I had to wake him up this morning so we could go to the clinic for his MTP-PE infusion. Mattie was so mad at me for waking him up, but he did pull out of it and even ate breakfast. When I got to the hospital, I pulled into the parking lot behind a woman who was driving a SUV and she seemed upset. It turned out she parked right next to me and I recognized her face. I recognized her because she is local news anchor. She started talking with me about how Georgetown is not user friendly, and she particularly honed in on the parking problem and the courtesy of the staff. She said she planned on doing a broadcast about these issues in particular. I felt the need to tell her that it was true that parking is challenging, but to park and have to wheel around someone who is disabled in this parking lot takes a special act of courage and faith.
I did not get Mattie into clinic until 12:30pm, and we did not get home until 7pm. That should give you an indication for the length of our day! When Mattie arrived in clinic , I learned he needed to receive pentamidine first, which is an IV antibiotic to prevent pneumonia. That infusion took over an hour, and then was premedicated with Tylenol and Atarax (an antihistamine), for his MTP infusion which began at 3pm. Despite having to be in the clinic a long time, Mattie was super busy. Jenny and Jessie worked with Mattie on a cardboard house structure, and Mattie also had a surprise visit from Brandon. Brandon (Mattie's big buddy), came to the hospital today, not for a check up or another procedure, but solely to play with Mattie. What you need to understand is that Brandon doesn't live around the corner. So he has a big commute back and forth, which makes his visit even more meaningful and special.
Brandon, Jenny, and Jessie did a great job entertaining Mattie, and I could tell he was having a good time. He designed a cardboard box house structure, and they pulled out Mattie's animal shelter that he created last week. Mattie developed a dog sitter character in this play scene, who was played by Jessie. The dog sitter was a little bit like Mary Poppins, in fact she sang the same song as Mary Poppins.... "Let's go fly a kite..." Any case, as the dog sitter was singing, all of a sudden a gust of wind blew her off the ground with her kite. Mattie and Brandon were holding the kite's string. Jessie was being blown around the clinic, and I tried to snap some pictures of this funny scene.
Left: Jessie is playing the dog sitter (who is a doll in Jessie's right hand), who is flying around the clinic on a gust of wind.
Right: Jessie and Denise (Mattie's social worker) trying to find a way to bring the dog sitter back to the ground!
Left: Brandon and Mattie pulling on the string and trying to reel the dog sitter back onto the ground.
While Mattie was playing I had two meetings. One was a joint meeting with Anna (Mattie's physical therapist), Dr. Synder (Mattie's oncologist), and myself. The second meeting was to discuss Mattie's lung pathology report. Anna and Dr. Synder know that inpatient physical therapy was something that interested me for Mattie. So we discussed this today. After our discussion, I completely agree with Anna and Dr. Synder. Mattie is not physically or emotionally ready for such intensive PT at the moment. Mattie is emotionally fragile and shuts down to people, so integrating new therapists and a new patient care setting into Mattie's world would not be good time at this point. In addition, Dr. Chahine does not want Mattie to put any pressure on his arms for at least a month, so that his ribs and bones can heal. However, inpatient therapy is definitely something to learn more about for the Fall. So I found this conversation very helpful!
When I met with Dr. Synder, she handed me the pathology report from the lung surgery.
I requested this documentation because I wanted to see in writing what the results were. So in essence, three of the lesions were calcified, viable tumors (meaning they were osteosarcoma and the tumor cells were alive and active within the lungs), two other lesions weren't tumors at all (so they weren't osteosarcoma, but thought to be small pieces of collapsed lung), and the remaining three were calcified but no live tumor cells were present (which Dr. Synder tells me these lesions were most likely osteosarcoma at one time, but either the viable cells naturally died on their own, or something killed them. This could be explained by chemo, MTP, or the combination). Now what gives me hope on the lung front is that all of Mattie's margins were negative, meaning that there wasn't any cancer in the surrounding tissue around the removed tumors. In addition, we know that four of the larger tumors were present in Mattie's body prior to receiving MTP in January. However, the smaller lesions which were undetectable through scanning in December (before MTP was added to the regimen), all turned out to either be dead or not cancer at all. I would like to assume therefore, that since MTP was incorporated into Mattie's treatment in January, that it is keeping the lung metastasis at bay. Or at least this is what I hope is happening. Dr. Synder did explain that one of the viable tumors was sent to Onotech, a biotechnology company in California who analyzes tumors and can report back findings such the types of receptor sites present on the cells. One Osteo parent mentioned Gleevec to me in a blog posting, and I have consulted with Mattie's doctors on this drug. Gleevac was first approved by the Food and Drug Administration (FDA) in 2001. Gleevec (imatinib mesylate) is a unique treatment for certain forms of cancer. It works by targeting, and turning off, specific proteins in cancer cells that cause the cancer cells to grow and multiply. Gleevac targets one cancer protein that causes Philadelphia chromosome positive chronic myeloid leukemia (Ph+ CML) and another cancer protein, called Kit, that is the suspected cause of gastrointestinal stromal tumor (GIST). So Onotech is examining Mattie's tumor to see if it has the Kit receptor, if not, Gleevec won't be effective for Mattie, however, most osteosarcoma studies show Gleevec is not an effective form of treatment for this disease. None the less, learning more about Mattie's tumor, may help in designing more effective treatments for him when his cancer returns. I am told that Mattie's cancer will return, it is just a matter of when.
This afternoon, Mattie had an MTP reaction within 20 minutes post infusion. During that time, he was shutting down and refusing to be examined. Katie, one of our wonderful HEM/ONC nurses from the PICU came down to visit us, because she knew we would be in clinic. It is always nice to see the nurses from the fifth floor, I miss them already! Katie helped us get Mattie a bed in the clinic to lie down in. Also during this time, Louise and Tamra stopped by briefly, just to say hello. But they could tell Mattie wasn't himself. Thanks for stopping by and sharing your warm smiles. Mattie did sleep for a bit, but when he came to consciousness, he was upset, had the chills, and was moaning. He wanted Demerol, which is the narcotic used to treat the rigors from MTP. When Dr. Synder came into the room she assessed Mattie and wouldn't give him Demerol. I began to get worried because she wanted me to take Mattie home as is. She then spoke to me out in the hallway and explained that Mattie is already on narcotics for pain from his surgery, and she did not want to expose him to more medication if he absolutely did not need it. Her reasoning made sense, and I always know she is looking out for his best interest. So I followed her advice. She told me to go back into the room and tell Mattie he is okay and could go home. I wasn't sure that was going to work, but when I went in, I basically told him that he was okay, the worst of his symptoms were behind him, and being home and out of the clinic will make him feel better. I also told him that the clinic was cold and it was warmer outside, and would feel better instantly. I said even I was chilly and shaking, so perhaps he was like me, and was just cold. He bought that, and I was able to transfer him into his chair and we arrived home at 7pm.
We want to thank Barbara L. for a wonderful home cooked dinner tonight. Your pork tenderloin was delicious, and we all enjoyed it along with your wonderful ginger cookies! Thank you Barbara! Your support is very much appreciated!
As this week unfolds, I am facing a daunting PT schedule that will begin for Mattie. Physical therapy four to five times a week in the hospital. I know he needs to do this, but do I have the stamina for this? I find with each week, some other new test is set before Peter and I, and the challenge is can we meet it? Not sure, nor do I know how much longer my back will hold on lugging around this wheelchair. I joke with Anna all the time, saying that I will be her next patient! So keep us in your thoughts and prayers. What we need is not only a Mattie Miracle, but we need the strength and fortitude to achieve this miracle!
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am not sure where you would be without your friends. No one's family is big enough to cope with an overwhelming situation like this. I often see cancer in my mind as a tidal wave, coming in and sweeping away all that was carefully built and leaving wreckage in its wake. And like the cleanup from those, one never knows what tragedy or trouble one will find as you search among the ruins for the pieces of your life. Friends provide the sustenance, the strength, the helping hands when you simply can not lift one more piece. What a blessing all your friends are and especially Ann and her family who have made you a part of hers. I am so glad you got out to spend time with Peter on Sunday and then had the connection of a family dinner with Ann and Bob and their wonderful children. I know you and Mattie are headed back to the hospital today for an infusion of MTP-PE and I hope the reaction is an uncharacteristically mild one."
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