Friday, May 1, 2009

Friday, May 1, 2009

Quote of the day: "Promise me you'll always remember. You're braver than you believe, and stronger than you seem and smarter than you think." ~ Christopher Robin to Pooh (A.A. Milne)

Mattie had a much better night on Thursday, in comparison to Wednesday. Mattie had his teary moments though, and there were times when he was intensely itching both his leg with the cast and his chest by his central line dressing. Mattie even asked Peter and I to change his central line dressing (something totally unheard of for Mattie). So Peter and I started the process. In fact, I got a corner of the dressing loose, then Mattie absolutely lost it and asked why we were changing his dressing. Mind you he is the one who requested we do this. In any case, he got himself so upset that I landed up not actually changing his dressing. Peter helped me with that moment in time, and then he went home for the night. Once Peter left, Mattie got it in his head that he wanted to draw a star. He asked me to draw one, and after I did this, he got very upset, because in his estimation he "couldn't" draw a star, and his star wouldn't be "perfect." We talked about this but it was very hard to rationalize with Mattie. He got very frustrated in his perceived lack of ability. I kept encouraging him and asking how I could help him. I made a star stencil for him to use, I gave him a sample star to try to trace, but whatever I offered Mattie only frustrated him further. He eventually did draw a star, but was so disgusted with what he drew that he crumpled up the paper. It was at that point I called Erin in. Erin was our fantastic HEM/ONC nurse last night. You may recall that Erin trades Mattie hugs for empty syringes for him to play with. When Erin came in the room I had her judge Mattie's star. She loved it. He listened, but was still unhappy. Erin then brought in two board games for us to play. Now mind you it was close to midnight. Erin and Mattie teamed up against me and played the game, Guess Who. We also played Candyland together. We had a good time, and this put Mattie in a much better place. I can't thank Erin enough for her kindness, calmness, and support for Mattie. It made a difference.

When Mattie woke up this morning, Kathleen and Haley were his nurses. They both can hold their own with Mattie and helped to draw him out of his usual morning funk. Mattie woke up feeling nauseous, but it eventually passed without having to give him anything. After my experience with Ativan and Morphine on Wednesday, I rather be conservative on giving medications unless they are absolutely necessary. Meg came to play with Mattie at noon, and the irony is Mattie had NO recollection that Meg visited on Thursday. I am NOT surprised, Mattie was in a drugged stupor for most of Thursday. Soon after Meg arrived, so did Anna (Mattie's physical therapist). Meg and Mattie are great racing buddies, and Mattie was looking forward to Anna's arrival so that he could challenge Meg to a race. Mattie literally walked with his posterior walker from his room into the hospital hallway. That alone is a big walk, but then Mattie raced around the whole fifth floor of the hospital. Anna set up an obstacle course, and my parents helped to cheer on Mattie. Today's race was better than ever. Just when I think Meg can't possibly ham it up more, she surprises us. Anna too got into the act today. I snapped some wonderful pictures of the excitement. One thing I do notice is that Mattie seems to walk much better with the cast, and it is my hope to keep this up once the cast comes off. I think the cast provides support to Mattie's wobbly right knee.

Left: The race is beginning! From left to right --- Meg, Mattie, Linda, Anna, Alissa (Anna's intern), and Jey (Mattie's "big brother")

Right: Anna helping Mattie to win the race, by cutting off Meg - LITERALLY!

Left: Anna threw Meg into an office and blocked the door so Mattie could continue on the race course and get a leg up on Mattie.

Right: On the obstacle course, Mattie had to pick up a baseball bat and swing and knock off the bean bag frogs on the plastic blocks. Again, you can see Anna (on the left) holding back Meg.

Left: Mattie crossing the finishing line first! What you can't see is Meg was hamming it up, huffing and puffing on the floor, because Mattie tired her out racing.

After the race, Mattie went back to his room to work on his Super Mattie Adventures book with Meg. Meanwhile I had a chance to speak with Anna. Anna has a great goal for Mattie. She would like him to begin walking without the walker before his surgery in June. An excellent goal, since we both know he will not be physically able to use his walker once his lung surgery takes place. So that Mattie doesn't lose immense ground with his leg, he needs to be somewhat self-sufficient in walking without a walker. Anna and I both agreed that Mattie is physically capable of meeting this goal, but emotionally meeting this goal seems like mission impossible. He is scared and frightened, and I wish there was a quick fix for that problem, but there isn't. Anna also understands Mattie's personality. If you push Mattie when he isn't ready to do something, this will do more damage than good, and Mattie will shut off from the entire physical therapy process.

While Mattie was playing with Meg, my parents and I went for lunch on campus. It was nice to get out of the PICU and be able to eat lunch without bouncing up and down or playing. Though I fully admit that it is hard to move from a stressful moment to moment existence to a calm world.

After lunch, my parents and I bumped into Dr. Synder, Mattie's oncologist. We had the opportunity to ask her some questions, and Dr. Synder revealed to me that Mattie's lung lesions in March were classified as calcified lesions in the CT scan report. This conversation came up because this week I read on an sarcoma listserv about a particular CT scan technique using something called "bone windows." A medical doctor at MD Anderson was recommending to a particular parent the importance of this special CT scan technique in order to determine if lung lesions are indeed metastases (meaning if bone cancer has metastasized to the lung, then the lung lesions would have bone cells within them). The doctor at MD Anderson claimed that this specific CT scan could help determine if there were bone cells within the lung lesions (at the moment the only way I know to confirm metastasis is through a pathology report generated from the surgical removal of the lesions). This listserv posting intrigued me, so I asked Dr. Synder about it. I then called Peter on the phone to see if he knew that Mattie's lesions were "calcified." This was news to him too. I have looked this up, and it turns out that lung lesions that are benign or cancerous can be calcified, but this was a term that caught me off guard today. Maybe because when I think of the term calcified, I think of bone, which made me leap to the conclusion that these lesions are indeed osteosarcoma.

After I bumped into Dr. Synder, we also had the opportunity to bump into Debbi (our sedation nurse angel). Debbi read about Mattie's reaction to being on morphine and ativan. I told Debbi that I am truly confused. The PICU doesn't allow patients to be on Versed and Ativan at one time without an intensivist present, because together these drugs have a sedation effect. So I asked Debbi why Mattie was able to then receive Morphine and Ativan at one time? Because from my perspective Ativan and Versed are both anxiolytics (anti-anxiety medications), and if Versed with Morphine could cause sedation, then couldn't Ativan and Morphine? Well in Mattie's case, I think the answer is yes. I would say that Mattie was under a form of sedation on Wednesday night into Thursday. Debbi promised to look into this for me, and I know Debbi will get down to the bottom of this.

When my parents and I got back to the PICU, Mattie was with Meg and Jenny. Meg let me know that she and Mattie had a bit of a blow up today. Meg was working with Mattie and helping him recreate his story of Captain Mattie. But then Mattie had enough, and he wanted Meg to do the rest of the work for him. Meg told Mattie she would help him, but that this was his project. Mattie is good at delegating tasks, and Meg wanted to hold Mattie accountable to finishing his story. Meg said that Mattie did not like her request, and he did not speak to her for a while. However, if she hadn't told me, I would never have known. Since they looked like good pals when I showed up. Later in the day, I confronted Mattie on his behavior with Meg. He looked at me sheepishly, and admitted to everything Meg told me. It actually was a teachable moment for two reasons. First, the lessons is that it is important to finish what you start, and second, that friends can disagree, but that is healthy, they can resolve it, and move on. I am happy Meg told me what happened so I could process it with Mattie.

Mattie, Jessie, and Jenny worked together on a Mother's day gift for me. Mattie had Jessie get his vase creation out of the hospital's kiln. Then Jenny and Jessie helped Mattie design his own tissue paper flowers to place in the vase. I had to wait in his room for the surprise. Here is how it was delivered to me!

Right: I had my eyes closed as my mom wheeled Mattie in to give me his surprise.

Left: Mattie and I holding his gift!

Right: Mattie was telling me about the flowers he made! He was very proud of his creation, and I am thrilled to have something special that Mattie made with his own hands.

Right: Mattie, Grammie, and Vicki with the special red clay vase created and designed by Mattie.

Mattie received pentamidine later this afternoon. This is an IV antibiotic that Mattie gets once a month to prevent pneumonia. While receiving this drug, he was playing with my mom. In addition, Kathleen and Haley (Mattie's nurses) came in every 15 minutes to take Mattie's vitals while on this medication. They enjoyed watching what Mattie was creating. Linda had a movie screening today for the kids, but Mattie was unable to go because he was receiving his IV antibiotics. Jenny was nice enough to bring Mattie pizza and candy, which made us all feel special and part of the movie event.

As the evening was unfolding, Peter arrived at the hospital and brought lots of activities for Mattie to do with him this weekend. Before I left the hospital, I bumped into Denise, our social worker. Denise and I discussed the difficult transition we will have as we move away from the PICU. We ONLY have one more chemo left? We are now into month TEN of this process, and though I am happy this will be behind me, I will deeply miss the support and wonderful HEM/ONC nurses who have helped me every step of the way through this harrowing ordeal. Sure as Denise said, I could go back and visit them once we are gone. But having moved homes several times in my life, I know that when you move things change. It is sometimes hard to go back. Needless to say, meeting these HEM/ONC nurses has been a life altering experience for me. In fact, when I left the PICU tonight, Kathleen (Mattie's nurse) came up to me to give me a hug. She was happy I was going home and getting a much deserved break. These personal connections have meant a great deal to me over these 10 months.

Peter is at the hospital tonight with Mattie, and I am home, going to attempt to relax. If that is possible. Though I am happy to be home, a part of me is at the hospital and hoping Peter and Mattie are having a good night together. For a Methotrexate update, Mattie's 24 hour blood Methotrexate level was 5.2. He must have a blood level of .1 or below to be discharged.

We would like to thank the Bires family for a wonderful dinner! Mattie loved the hotdog! We appreciate your continued support!

I want to end my posting tonight with a message from my friend Charlie. Charlie wrote, "I have no words to describe Thursday's blog. What a completely horrifying day. Having been through hallucinations caused by medication, I can tell you it is incredibly frightening. It is impossible for someone to comfort you because you are so certain of what you are seeing even though a small voice in the back of your mind may be trying to tell you what you see and hear is impossible. Being on the other side of this situation is no better; it is futile to attempt to get past the noise in the brain but you feel compelled to keep trying. I have great difficulty imagining anything harder for a mother of a small child to deal with. And then if anyone reading the blog needed a reminder of just how toxic chemotherapy is, we had a vivid example in front of us with the welts on your hands from dealing with the drug as Mattie was trying to clear it from his system. As you said, one of the worst things about cancer and the treatment is that it becomes all consuming; it takes over every piece of your life both waking and sleeping, tears away your privacy and personal space, intrudes on every conversation and irrevocably changes your life."