Monday, July 6, 2009

Monday, July 6, 2009

Quote of the day: "Survival is a form of resistance." ~ Mendel Le Sueur

I began my day by receiving this lovely picture in an e-mail from Carey, a fellow Osteo mom. Carey and I have never met each other, but we became acquainted with each other through Mattie's blog. Carey's sister follows Mattie's blog and connected Carey to us. Carey has an 11 year old daughter with Osteosarcoma, who was diagnosed about a week after Mattie, in August 2008. Carey and I have since exchanged many e-mails with each other, and we keep connected on the progress of our children. Carey sent me this photograph, because you will notice a young lady displaying the fact that she is wearing a Mattie Miracle wristband. I introduce you to Alexandra, Carey's niece. Next to Alexandra, you will see a cute girl with a white hat looking at her cousin with a big smile, this is Lauren (who has osteosarcoma). Alexandra purchased a Mattie wristband and we deeply value her whole family's support. Alexandra lives in Maryland and is a high school senior. Alexandra had her own host of medical issues to overcome when she was younger and I have no doubt this gives her insights into children who are living with serious medical issues. Alexandra just got back from an exchange program in the Netherlands, and apparently wore her Mattie Miracle wristband and spoke about Mattie there, so the message about osteosarcoma is getting around. Thank you Carey for passing along this wonderful photo and for sharing this hard journey with us.

Mattie had a rough night of sleep on Sunday. He was literally up every two hours. Mattie complained about everything from pain to nausea. By 6am, I couldn't take it anymore and gave Mattie more pain medication. He finally went back to sleep, and slept soundly! I woke Mattie up this morning so he could eat and then get ready to head to clinic. That went smoothly, but when I got to my car, I realized all our hospital boxes and supplies that we keep in Peter's car, were still in my car. Peter transferred them to my car on Friday, so we could take his car on our road trip for the weekend. So before I could load Mattie into the car, I had to unload our car, and repack Peter's. One thing became very clear to me, we not only have a ton of stuff at home, but we have a mobile unit right in the back of Peter's car. Literally I could set up camp with the supplies we have stored there. This certainly makes sense since we lived out of these boxes and supplies during 11 months in the PICU. So we have two lives to contend with and to clean out. Our home life and our car/mobile life. Wow, that was a little too overwhelming for me today to face.



When we got to clinic, Mattie played with Jenny for a while. He was motivated to continue working on his Hope Fountain or Waterfall as he called it today. I included a photo of how the fountain was transformed today into a jungle theme. You can see green construction paper representing grass, tube like structures representing palm trees with a yellow monkey climbing between the trees, the actual bluish water of the hope fountain, and of course these huge bugs that have made this jungle area their home. The yellow structure in the lower left hand side of the photo represents a bee hive! There is something for everyone in this creation! Mattie spent a great deal of time on this, and then of course wanted to play with the set he created.


It was fascinating to watch Mattie transfer his demanding behavior from me onto Jenny. He had Jenny jumping, and Jenny had other children to balance. Peter and I have talked about the need to reinsert more discipline into Mattie's life. This was impossible to do when he was so sick, but now that we are trying to establish a more normal life, Mattie needs a better understanding of boundaries. He needs to learn the art of being patient, of playing by himself, and the need to respect our decisions. Today actually transpired a bit different from how I thought it was going to go. After several weeks of receiving MTP-PE and having a negative reaction, this was the first week in a long time, where Mattie had NO reaction what so ever. I was unprepared for this, but of course ALWAYS welcome it. However, Mattie was very belligerent in clinic. He gave Dr. Synder, his oncologist, a hard time. He kicked her, and smashed her hand against his wheelchair multiple times. There was a level of anger he was expressing, and during these moments of frustration, he was unable to use words and express himself. But Dr. Synder did not give up. She finally got Mattie to use words rather than physically hurting her to express himself. In fact she wouldn't let him leave the room until he used words. She was a brave soul, because it wasn't easy to sit there and get hit. Dr. Chahine, Mattie's lung surgeon, also came by to examine Mattie's incision. That did not go well either. Mattie did not want Dr. Chahine touching him, and all he kept saying is he doesn't like doctors! Fortunately Dr. Chahine did not take it personally. Mattie's incision is healing beautifully and Dr. Chahine feels that Mattie can start putting pressure on his arms next week. Wow a month goes by quickly!



The real issue for the day though was physical therapy! Mattie gave Anna an amazingly hard time. He shut down and did not want to do therapy. He said it wasn't fun, and he did not want to do it. As usual he claimed to know better. Perhaps I should let the therapists take over at that point, but I feel as a parent it is my responsibility to correct and direct Mattie. I wasn't going to let Mattie talk himself out of therapy. We talked about how therapy may not always be fun, it will be work, but this work is necessary to walk and get better. I told him if he wants to go back to school and play with his friends at school, he has to be walking. Anna had Mattie standing for 15 minutes on both of his feet. He actually was very uncomfortable with this, and then started complaining that his right foot hurt. But I kept reminding him that his foot is no longer fractured and he can put pressure on it. I frankly wonder how other children do therapy without their parents involved in the session. It must be great for them, but for me, I feel the need to play an active role, otherwise with all of Mattie's back talking and attitude nothing would get accomplished. Mattie really refused to do therapy today, and then called me his boss. I corrected him and told him I am his mother, and as his mother I have to look out for his best interest, even if he perceives what I am asking him to do is not fun. He then proceeded to tell me I was a bad mom. What you need to understand is this whole conversation is happening in the middle of the clinic, where everyone can hear what is going on. I have become so desensitized to discussing sensitive issues in front of people this year, that I really did not care who was listening. But I can assure you I have come a long way, since I would have been mortified by this dialogue in public back in August 2008. I finally told Mattie I wasn't going to argue with him, but if he decided not to do therapy, the only person he was hurting was himself. Anna really worked hard at being flexible and approachable with Mattie. Anna did get Mattie to kick a ball several times today with his right foot, but it was like pulling teeth. After hit the ball several times, he broke down into tears. So needless to say this was a therapy session that was very challenging. Challenging because Mattie wouldn't meet us half way and participate in the process. We shall see what tomorrow holds as we head to the physical therapy clinic, rather the pediatric HEM/ONC clinic for a session. This is one of the many challenges of dealing with a young child with osteosarcoma. It is sometimes hard to rationalize with a seven year old about the importance and nature of physical therapy. All he can think about is pain, being controlled by someone else, and that it isn't fun. An older children may feel this way too, but I think they would also understand the importance of buying into the process.



At 5:30pm, we left the clinic, and Dr. Synder practically walked me to my car. It was the only way I was able to discuss Mattie's blood work and next steps with her. Mattie wouldn't give me a minute in the clinic to myself, and since Jenny and Jessie (Mattie's art therapists) had previous commitments, I was balancing Mattie alone. Dr. Synder landed up helping me with my purse, cleaning things off my face from clinic, and I started laughing. I said to her I must look like I am in need of a lot of help.

So with regard to next steps here is what we know so far. Mattie is headed for an echocardiogram on Thursday morning. We are trying to assess if his heart has really been impacted by chemo, or if over time it has repaired itself. About a month ago, Mattie's echocardiogram indicated a reduced LVEF (Left Ventricle Ejection Fraction - 51%), which in layman terms means that his heart is not pumping with its normal level of pressure. Dr. Synder wants to assess his LVEF this week, and from there will determine whether he will get two more doses of Doxorubicin (one of the chemo drugs he received before). What surprised me is she has tentatively scheduled this two day infusions of Doxorubicin for next Thursday and Friday, but in the clinic. So we wouldn't be doing this as an inpatient in the PICU. Certainly I am thrilled we can go home each night, but a part of me will miss the opportunity to see our HEM/ONC nurses in C52 that we have become so fond of. If Mattie's LVEF remains the same or decreases further, he will be ineligible to receive these two doses of Doxorubicin. So we will know more after Thursday's echocardiogram. Peter and I debated back and forth today about next steps. You need to understand that there are NO next steps, or at least NO known and well researched next steps for a patient like Mattie (Can you believe there is little to no data out there about how to treat a patient who has had osteosarcoma removed from the limbs and then the lungs? What I am saying is there is no research about a maintenance plan or how to treat this horrible disease prophylactically, when there is no evidence of further disease.). He technically has no evidence of disease right now, so there is no trial or drug to ethically give him. However, Dr. Synder is recommending that we scan Mattie every two months rather than every four, and plans on consulting with Dr. Bob to see if he is amenable to having Mattie's previous surgical sites scanned every two months as well. We are still awaiting results from Oncotech, which may enlighten us further about the receptors present on one of Mattie's lung tumors.

We want to thank the Chiaramonte family tonight for a wonderful dinner. Mattie loved the pasta and apple pie. I am happy to report that Mattie is eating a bit better and is drinking milk like it is going out of style, which is excellent. I had several conversations with Ann today, and she is being very proactive to make sure Peter and I celebrate our anniversary next week, as well as my birthday. I remember my friend Lisa wrote me a few weeks ago and reminded me it is important to celebrate my birthday. That Mattie needs to see this normalcy. The way I feel, my birthday could come and go, and it could be any ordinary day. In fact, Mattie was diagnosed two days before my birthday last year, a day I will NEVER forget. However, clearly Ann and several other Team Mattie supporters are focused on making this year a better one for me, and that includes getting together to celebrate my birthday. In a way it is very, very touching that Ann and others care this deeply. I am not used to having so many people caring for me, but I have found that in allowing this to happen I have developed some beautiful friendships.

I end tonight with a message from my friend, Charlie. Charlie wrote, "I am glad you got your break but sorry it wasn't everything you hoped it would be for Mattie or for yourselves. Although it is difficult, I think you are going to have to find a way to make more deposits in your "emotional bank account" even if they are very small ones (i.e. short amounts of time). What you are facing is almost akin to a prison camp situation and is about personal survival until Mattie is really on the path to healing and wellness. You need to work at protecting yourself as well as Mattie since his survival depends on you. I know that Ann and the other members of the Mattie team will understand and do everything they can to support you in this process."