Friday, June 5, 2009

Friday, June 5, 2009

Quote of the day: "Whatever you do may seem insignificant, but it is most important that you do it." ~ Mahatma Gandhi

We have noticed that Mattie can't seem to settle down at night without receiving Morphine. When I spoke to Dr. Gonzalez today, she felt that Mattie uses Morphine as a sedative, to help quell his anxiety and fear, which seems worse at night. I think this is a very legitimate theory!

We woke Mattie up at 8:30am, so that we could leave the house by 9am to get to the hospital in time to register and be on time for the bone scan appointment. That seems like a reasonable hour unless you go to bed after 1am, which we did. When we were arrived at the hospital, parking was actually easy! We met up with Linda while we were registering. Mattie was beside himself with the registration process. He told me it was boring and asked me why they did not know this information already since we come to the hospital every week. Excellent question! I ask this myself ALL the time. Mattie was shocked to learn that while he is playing with Jenny and Jessie in clinic each week, that I head to admissions to register him into the hospital for each hospital stay. He couldn't get over it. Once we were registered, we headed up to nuclear medicine to receive the injection of dye for the bone scan. A radioactive chemical called an isotope is injected into Mattie's central line. Once this isotope enters the bloodstream it travels to the bones, where it emits Gamma Rays, which are similar to x-rays. These Gamma Rays are detected by a Gamma Camera and analysed by computer to form an image of the bones. Potential problem areas emit more intense rays & appear as bright spots on the scan. Mattie has to sit for two hours in order for this isotope to get absorbed into his system. While we were waiting, we headed back to the clinic. Linda was with me throughout the entire day as was Ann (which was 10am until 5pm!). Linda clearly put a lot of thought into today, since she provided Mattie with a cart load of toys that she knew would engage him. Linda brought Mattie a wonderful fire boat Lego, which he couldn't wait to open up and assemble while in clinic.

I snapped a picture of Mattie in the hallway, waiting for his bone scan. Linda gave Mattie a view finder, and he was having a great time looking inside and sharing the scenes with us. Linda's bag of tricks were invaluable today, as is she. Linda knows how to manage any situation, and it is clear that the hospital staff respects her. She worked hard to make today go as smooth as possible for us! While in clinic, we met up with Ann and Mattie had his blood drawn to monitor his counts. Ann and Linda played with Mattie, and Jenny and Jessie gave me a ceiling tile to paint. A child had started the particular tile they gave me, but it needed to be completed, so I have taken on this project. An interesting project because it is hard to always understand what another artist was trying to capture through the art, but I enjoy this challenge. I am trying to transform this child's colorful abstract wavy stripes into a hot air balloon. May sound strange, but if you could see the colors, you would understand where my thoughts are coming from. Or maybe I just would like to be transported far away from our hospital world. Not sure!

At around 11:45am, we pulled our caravan together in order for Mattie to have a bone scan. While waiting for the bone scan, Ann gave Mattie a gift she brought back for him from Hershey Park. Though Mattie doesn't like chocolate he loves his new Hershey kiss red pillow. It is so inviting you either want to lie down on it or eat it! We even used this pillow today to prop up Mattie's right arm during the bone scan. Mattie handled the scanning quite well today, despite the fact that he was starving! He couldn't eat since the night before. So by 2pm today, I thought he was going to pass out. In addition, several of the positions Mattie had to hold were very uncomfortable for him, and at one point during the bone scan, he was crying. Mattie wasn't moving, or saying a word, so as to not screw up the scanning picture, but he was clearly miserable. At which point I asked the tech how much longer he would need to remain still. Fortunately Mattie's scan was complete within minutes after that point. But Linda, myself, and Ann were trying all sorts of things to get Mattie's mind off of things. The funny part of our day is while we were in the nuclear medicine department, Linda spotted a rolling table that was the perfect size for Mattie. So she asked to borrow it. We literally rolled this table around with us everywhere! You had to see us. I was pushing Mattie, Linda was pushing the toy cart, and Ann was pushing this desk like table. No wonder people know who Mattie is at the hospital! How many seven year old's travel with a caravan?!

After the bone scan, we headed directly to the CT scan. We had to wait a while for this scanner, because Dr. Synder (Mattie's oncologist) ordered a refined 1.5mm cut scanner. It shows much more details slices and pictures of the tumors. I am thrilled Dr. Synder ordered such a scan, and I wish we had such scans in January and March. This may have given us more details about the tumors. I am not saying that our course of action would have been different, but to me knowledge is power. While waiting, we were in the hallway of the CT scan department, and Mattie was playing with his table, a basin of water, some boats Linda gave Mattie, and some pennies Ann gave him. They started playing a hide and seek game with pennies. Mattie would hide the pennies somewhere on the table under the basin, his Legos, etc, and we had to find them. This occupied him for a while, in the mean time, Linda was putting a lot of pressure on the CT scan folks in order for them to honor Mattie's appointment time. Her persistence was greatly appreciated! Mattie did just fine throughout the CT scan, but by the time it was over, he was STARVING and very uncomfortable.

Mattie ate an entire bag of teddy grahams once the scan was over, and I have no doubt watching Linda and I transport Mattie, the toy cart, and the table/desk was a sight. Ann met us back in the clinic and bought lunch for all of us. Literally the stress I was feeling, eating wasn't top on my list, but I appreciate Ann taking care of all of us today. While I was awaiting the scan results, Mattie had a full afternoon in clinic. Robbie, one of our favorite volunteers, came to visit and play with Mattie. Robbie was a great diversion for Mattie because Mattie was beginning to fixate on pain and developing chills. But we all managed to redirect him and the chills went away and he calmed down. Later in the afternoon, Jenny (one of Mattie's art therapists) and Dr. Biel (Mattie's psychiatrist) had a play session with Mattie. They literally acted out an operation at the art table, and Mattie was in control and was the surgeon. Mattie clearly caught on fast and told them he knew why they were doing this since he is going to have lung surgery. Can't fool Mattie! The play session went very well. Jenny hammed things up as the incompetent surgeon and Mattie played the focused, determined, and skilled surgeon.

I snapped a picture of Jenny and Mattie working together. Basically in this scenario, Jenny was a surgeon. A patient (in this case the SKELETON) would come to her and she would try to operate and correct the presenting problem. However, she would always screw things up, such as she would attach an arm where a leg should be and the leg was where the arm should be. Mattie was the brilliant surgeon who would always be called upon in the end to correct all of Jenny's mistakes. He was so popular that he could never go on vacation, because his patients always needed him. Throughout the play session, they talked about bone bugs, bugs in the lungs, and the recovery process. I am very happy that Jenny and Dr. Biel began to process this major surgery with Mattie today. I am also happy that Peter and I started the dialogue last night with Mattie. I felt this news had to come from us first.

In between mock surgeries on the skeleton, Mattie was also coloring flowers. Here is one of his lovely creations now hanging in my kitchen!

Dr. Synder came to visit with me today and delivered the results of the scans to myself and Ann. Ann was the brave soul who came into the room with me. Dr. Synder let me know that the bone scan results appear clear. There are NO new bone tumors. However, she said there is a lesion on his left femur (the good leg!) that they are monitoring. However, Mattie presented with this lesion back in July of 2008, and they suspect it isn't osteosarcoma. She then told me there were NO new tumors present in the lungs, as revealed by the CT scan. However, the four lesions in the lungs that were detected back in December of 2008, have now doubled in size. The tumors are now 8-9 mm in size. So in essence, we now know that the lesions in the lungs are definitely osteosarcoma. We also know that the intensive chemotherapy that Mattie has been on isn't working at combating the bone cancer in his lungs. Sure I am thrilled that NO new tumors presented today. If there were, then I have a feeling we would be talking about palliative care. There wouldn't be any reason to continue treating him aggressively. So I am happy we are not faced with this exact issue. However, today's news hit both Peter and I very hard. Because we are faced with two decisions. One, we can either continue to treat him aggressively and remove the lung tumors through surgery, or two, we can avoid surgery and treat him palliatively through radiation, knowing that this most definitely won't achieve a cure. Dr. Synder said this is a personal decision. I certainly can appreciate why some families would stop the treatment now. Mattie's situation is grave, we know standard chemotherapy doesn't work, and our options are limited. Sure there are trials we could potentially get into if Mattie relapses, but how much are we willing to put Mattie through? I don't know the answer to this yet, but I do know neither Peter and I could live with the fact that we could have done something such as the lung surgery, and did not try to reach a cure. So needless to say, our plan is to still do surgery. When you have a choice between death and a chance for life, seeking out life is the only option. But I can understand why other families may not choose this option, because with it comes more physical and psychological pain, with NO guarantees! If we are not living hell on earth, then I don't know what you call this!

Here is the simple fact. We are thrilled that no new tumors are present, but when this is your child, hearing anything less than completely 100% positive new is devastating. I am no physician, but at this point I might as well be. I know that having tumors not responsive to standard chemotherapy is not a good sign, and I can't help but wonder what microscopic disease is still present in Mattie's body. I think the only thing today that would have truly made me more comforted is to hear that the tumors remained the same in size! This would give me some sort of hope that perhaps we had a handle on this disease. If that is possible with osteosarcoma! I think the next phase of Mattie's treatment will be challenging for Peter and I. Why? Because we have to now reinstill hope in ourselves. We can't buy into the surgery and try to reach for a cure, if we have doubts. This is where both of us are tonight, with heavy hearts, and yet trying to stay strong so that Mattie continues to be happy and focused on fighting the "bone bugs!"

As we head into Saturday, Mattie is having an official birthday party with some of his close buddies who are very familiar with his condition. Mattie is looking forward to this and of course to his sleepover at Ann's house. In a way this form of happiness couldn't have come at a better time.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I was glad to hear that Mattie managed to get somewhat sorted out now that he is back at home. As usual, you did a great job with the news about the surgery and he took it like the trooper that he is. I think your use of visuals and hands on is truly inspired and speaks volumes for your skills as a therapist. Many of us are therapists and we do pretty well with our clients but fall short when trying to apply those skills in our own families; I have to say that you do an amazing job of combining the two. Dan sounds like he will be a great addition to the "family" of assistants that will help Mattie regain his physical, emotional and mental equilibrium over the summer and fall. You definitely made the right call leaving him and Mattie to bond without your presence; I have to say I admire your courage as I know many parents would be unable to leave their child alone even for the child's benefit in this situation. You know how to push Mattie back toward the independence he both wants and fears. I hope the scans and tests all go well and that the surgery goes as planned and scheduled."