Quote of the day: "Every tomorrow has two handles. We can take hold of it with the handle of anxiety or the handle of faith." ~ Henry Ward Beecher
Mattie and I had a busy night together on Tuesday. We literally played a pretend grocery store game until 12:30am. Linda gave Mattie a fun set of plastic foods to play with, and we have been having a good time buying and selling foods. I play the customer and he is the grocery store manager. As the night was wearing on, I was developing a massive migraine. I am used to that constant headache pain, but I was also sick to my stomach, and trying to play through this feeling was overwhelming. I never knew a hospital cot could look so good, but I was thrilled for the opportunity to put my head down and have no demands placed upon me. Well other than every two hour urine captures!
Mattie woke up in a good mood today, and was very receptive when Anna and Joe (the orthotist) came to visit. Joe ordered an ultraflex knee brace for Mattie, and when he took it out of the box, I was stunned. This brace was huge, bulky, clunky, and heavy. So I asked to talk with Joe and Anna in the hallway, because if Mattie sensed my hesitation with the brace, it would be downhill from there. While we were talking, Mattie was assembling a puzzle my parents brought him. He was working on the puzzle with Katie and Jenn (his wonderful HEM/ONC nurses) and Linda. In the hallway, Joe discussed the process of how he was going to fit the brace to Mattie's leg. We discussed how Mattie would use the brace initially, for about 1-2 hours a day, until he is comfortable enough to wear it longer, and especially at night while he sleeps. Anna is getting married and will be on leave from the hospital until May 27. So we are developing a treatment plan in the mean time while she is gone to celebrate this special occasion.
When Joe came back into the room, Mattie was actually fascinated by the Ultraflex knee brace. Mattie watched how Joe was adjusting the straps of the brace, as well as using a screwdriver to lock the position of the knee joint of the brace into place. Mattie held still and cooperated. However, the brace was too big for Mattie, and Joe headed back to his office today to make some adjustments to the metal frame. After Joe left, Mattie's physical therapy session occurred. Mattie started by kicking bubbles in the air by the side of his bed.
Left: Mattie sitting on the bed, Linda blowing bubbles, and Anna and Jenn watching the bubbles floating by!
Right: Mattie headed outside to do physical therapy in the fresh air!
Left: Anna and Mattie exercising with bubbles.
While Mattie was busy with Anna and Linda, I sat outside and had lunch with Ellen (Charlotte's mom). Ellen brought me one of my favorite salads and a fabulous carrot cake. But most importantly I appreciate Ellen's friendship. Ellen told me some funny stories, and for a moment I forgot my problems. The beauty of humor! Thanks Ellen for your continued support!
After I had lunch, I met with Dr. Synder. She shared with me the written consultation report that was sent back from the Mayo clinic regarding Mattie's lungs. Dr. Moir is recommending that Mattie have simultaneous bilateral thorocotomies. In the letter he states that Mattie has FOUR tumors on the right side of the lungs and FOUR on the left side. In addition, he claims to see more on the left side. I was stunned by this news, since our reports indicate a total of four lesions, NOT eight. Dr. Synder did follow up with the doctor at Mayo, and since then Dr. Moir states that he made a typographical error. Needless to say, this confusion was unsettling. However, Dr. Moir confirmed my doubts. If you recall, a sternotomy is performed if there are no nodules present in the, hylem, the posterior portion of the lungs. According to the scans, Mattie does not have lesions in this area, however, that is not to say that there aren't lesions developing there that are too small to be detected by scanning. If the surgeon performs a sternotomy and during the procedure physically feels nodules in the hylem area of the lung, he would be unable to do anything to remove them. The only way to remove lesions in this posterior portion of the lung is through thorocotomies. I have been mulling this around for weeks, and I do not feel comfortable having a sternotomy performed on Mattie, because if by some remote reason he has posterior lesions, I want them out right away, I don't want to perform a sternotomy and wait for Mattie to heal before performing thorocotomies. Needless to say, I am saddened that Mattie will need such extensive surgeries that will take a long time to recover. When will the difficult decisions to make ever end? Dr. Synder explained to me that she realizes based on the type of parents Peter and I are, that we need to capture as much information as possible, before making an educated decision about Mattie's health care. She said she could simply give us the answer, but she knows we wouldn't be satisfied by this, and she is correct. I think she also feels that Mattie needs thorocotomies. I do not like the decision I came to, but it is the only decision that makes sense, and will give Mattie the best possible opportunity to capture all the lung lesions at one time!
Mattie visited the Lombardi Clinic today and spent some time with Jenny. Jenny worked with Mattie to build a rocket ship! In addition, Mattie also created an alien planet, filled with alien creatures. Of course in any new set up, who is bound to come out and play? That's right, Pinkie, Mattie's art therapy character, who has a taste for risk and adventure. When I got back to Mattie's room, I had the good fortune of listening to Jenny playing multiple pretend characters!
When I did get back to Mattie's room after lunch, it was FILLED with a ton of people. Sally, the story lady, was in the mix, and she brought several students with her to help enact the story and plot. Sally was dressed as a princess and she brought her dragon along with her!
Left and Right: Sally, the dragon, students, and Mattie acting out a story!
This afternoon, Linda and I took Mattie to the radiology department for an x-ray of his left foot. Mattie's other foot (the one without the fracture)
was bothering him today, so much so, that he needed morphine. However, the x-ray only showed swelling and nothing more than that.
Mattie and I played in the childlife playroom later in the day, and met up with Linda's intern, Katie and then my parents. Mattie was visited by his preschool friend, John and his dad, Mark this evening. We want to thank the Putnam's for a wonderful dinner, and Mattie loved the Scooby Doo cupcakes, and I appreciated the special chocolate. Thank you for your continued support!
Peter arrived from work, and helped out with Mattie, and also assembled a large radio flyer wagon that Linda gave to Mattie. Mattie is very excited about this wagon and wants to take a ride around the PICU tonight! Of course he can't because he is receiving chemotherapy, but he is currently in his room sitting inside the wagon! We also had a visit from Jerry and Nancy, our favorite music volunteers. Mattie wasn't in the mood for visitors, but I went out into the hallway to talk with them. I guess this is the part about leaving the hospital that troubles me, the isolation that Mattie is good at imposing upon me.
As we approach 9:30pm, Mattie is headed to receive his third dosages of Ifosfamide and Etoposide for the week. So far, Mattie is holding his own with these drugs. Thankfully!
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Everyone who is involved in Mattie's treatment is so focused on the cancer that they lose sight of the child that needs the care. You see and are trying to plan for it because you are his mother but they cannot see past the disease and think that once he is in a stable place with respect to that, the problems are solved. However the problems are just beginning in some ways. How to keep Mattie productively occupied both physically and mentally when he cannot attend school; how to get him to and from appointments for physical and occupational therapy (and how to find the right people to do the therapy); how to find people to care for him that you trust and that he will trust so that you can work again as an instructor and educator. Huge problems but about as visible as the bottom of an iceberg to those who are used to dealing with what is above the surface (the illness). I don't know anyone better at networking and finding solutions than you are so I know that if the answers and the people are out there you will find them. Remember that you have a caring family and group of friends to go to and start there."
Mattie visited the Lombardi Clinic today and spent some time with Jenny. Jenny worked with Mattie to build a rocket ship! In addition, Mattie also created an alien planet, filled with alien creatures. Of course in any new set up, who is bound to come out and play? That's right, Pinkie, Mattie's art therapy character, who has a taste for risk and adventure. When I got back to Mattie's room, I had the good fortune of listening to Jenny playing multiple pretend characters!
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