Wednesday, May 6, 2009

Wednesday, May 6, 2009

Quote of the day: "When nothing seems to help, I go and look at a stonecutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred and first blow it will split in two, and I know it was not that last blow that did it, but all that had gone before." ~ Jacob A. Riis

Three days until the March for a Mattie Miracle. Peter tells me that we have over 250 registrations as of today! Thank you for supporting Mattie and this walk. Your participation, donations, and volunteering at the walk are deeply appreciated

Mattie did not go to sleep until 2am. Mattie and I were able to finish painting his fifth clinic ceiling tile. Check it out, who says Halloween is only in October?!

It was a long night and at 4am, Mattie woke up to use the bathroom. His nurse was drawing blood at that time, and she had to stop the process because Mattie couldn't wait. In the process of stopping the blood draw, she also stopped his IV fluids. The IV pump just kept beeping until she came back in to reset it. Which wasn't long per se, but some how hearing such noises at 4am seems more daunting and rings through your head. Our morning started very early because Dr. Bob came at 7:30am to take Mattie's cast off. At first, Mattie stayed asleep, even through the racket that the cast saw was making. However, as the process continued Mattie was wide awake and engaged in the process. I have never worn a cast, but clearly it must be a strange feeling when it comes off. In addition, Mattie's skin appears to be SUPER sensitive to the touch. He would not allow me to wash his leg (which Dr. Bob said would be a good idea and would relieve the itching!), and after Bob left, Mattie became very upset, did a lot of crying, and was very tentative about his leg. It is yet another part of the adjustment process for Mattie as he learns to use his reconstructed limbs. Mattie was happy that Dr. Bob preserved his cast, and today I snapped a picture of Mattie with his "third" leg!

Mattie had a wonderful visit this morning from Jenny and Jessie. They admired his Haunted House tile and helped us sketch a roller coaster scene on Mattie's sixth ceiling tile. They even helped Mattie begin to color in the tile, but once they left, Mattie got upset and we had to put the paints away. Mattie at times gets frustrated with his perceived lack of physical abilities, and when this happens, it is hard to rationalize with him. So I find the need to reset and play with something else.

Jenny also started off our day with a wonderful cape she made for Mattie. The cape says, Super Mattie! I love the face! Jenny captured the essence of Mattie's story book character that he created last week. Outstanding! It is my hope that Mattie will bring the cape to the walk this weekend.

I knew Mattie's doctors were going to release him from the hospital today, but I did not feel good about leaving with Mattie's stomach pains (he needed several dosages of morphine on Tuesday). Dr. Toretsky ordered an x-ray today of Mattie's stomach. I asked Katie, Mattie's wonderful HEM/ONC nurse, what the doctor was trying to rule out. Katie said that they needed to rule out a more serious problem, and perhaps even a tumor. Though Dr. Toretsky truly felt that Mattie was developing an ulcer, which of course is very painful. But I am happy this was pursued further today. At 11am, Linda came down with me to the radiology department so Mattie could get an x-ray. Mattie was grumpy and not very compliant, but Linda promised to take Mattie and I to the hospital gift store after the test so that Mattie could pick out a treat. I had NEVER been to the hospital gift store, so this was an experience for both of us. Mattie did just fine in the x-ray, but I have learned not to take testing for granted. I now prepare to hear the worst. Fortunately one of Mattie's HEM/ONC residents found me early on in the day to tell me she saw NOTHING alarming. Thank God!

When Mattie went to the gift store, he selected a toy metal car and a special stuffed animal, a cat. But this cat looks very real. Mattie loved petting this cat, and had Lynx (the name Mattie gave the cat) sit on his lap as he rolled down the hallways. Mattie wanted to trick people into thinking this was a real cat. You can see for yourself in this picture, that Lynx indeed looks quite real. Linda always knows how to bring a smile to Mattie's face, and if you think this is easy, you need to spend an hour or so with Mattie when he is grumpy.

Linda spent a great deal of time today with Mattie playing.
My Dad even joined Linda and Mattie in the playroom and got animated over building a special cat box for Lynx.

I truly needed a break today from the PICU. I am thoroughly worn out and without sleep, I too am getting snappy and grumpy. I can hear myself talking to others and I know I am delivering information in a not so pleasant manner, but hopefully they understand the great deal of stress Peter and I live under. I had the opportunity to eat lunch on campus with my parents for over an hour. While I was taking a break, Linda and Mattie were busy playing. When we arrived back at the PICU, I did not see Mattie in his room or playroom. Where was he? Doing physical therapy. He had Linda, Katie (Mattie's nurse), and Jenn (a new nurse training under Katie) participating in the session with Anna. I then got involved and lots of good racing fun unfolded.

There was racing by foot (without the walker, or using the "mom" walker) and a wheelchair/wagon race. This was a first for Linda! We all had a great time, and Mattie was able to move his body.

Left: We knocked Linda out of the way, so Mattie would get ahead in the race!

Right: Check out Linda in a Wagon! What a race this was.

After physical therapy, I met with Dr. Toretsky who let me know that Mattie has a bowel obstruction, which may help to explain his pain. So the doctors wanted to give Mattie a lot of noxious laxatives (I know, because I smelled and tasted them!) to help him have a bowel movement, but I know Mattie. He would refuse. So when I got home tonight, I gave him a tablespoon full of Karo syrup, and within 30 minutes, he went to the bathroom. I will continue to give him Karo syrup until his system is significantly flushed out. In addition, Mattie is now taking Prevacid to help aid his stomach if he indeed has an ulcer.

Peter met us at the hospital, and we packed up the car, and headed home. Mattie fell asleep in the car, and in fact, remained asleep for over an hour on our couch when we got home. That was actually very helpful for two reasons. The first was we needed to unpack, but secondly, I just found out that a reporter from Channel 9 News is coming to interview Peter, Mattie, and I tomorrow at home. She is doing a human interest story for the news and Mother's day, and this will provide a wonderful opportunity to enhance the public's awareness of osteosarcoma. This is one of Peter's main missions and passions, and though I am deeply entrenched in Mattie's day to day care, I do appreciate Peter's bigger picture as well. In order to get ready for this interview, I felt compelled to reorganize some things in our living space. Not sure how successful I was, but at least I was productive. We have explained this interview to Mattie, and he seems excited.

We want to thank Gibby Earnest, Mattie's librarian, for a lovely dinner tonight. Mattie loved the watermelon!

I would like to share three e-mails with you tonight. The first e-mail if from my friend, Charlie. Charlie wrote, "Sounds like Monday night was another rough one. I am glad you were able to get Mattie quick assistance and pain relief. I just wish that when Mattie decides to collapse and sleep that you could grab some sleep as well. Your exhaustion comes through the blog so clearly. All these decisions are so difficult and there is just no clear right or wrong to any of them. All I can say is get the best advice you can and then follow your instincts as a mom and dad; rarely will that lead you astray. I am so glad everything for the march is coming together well for Saturday; many thanks to all the volunteers who have already put so many hours into the planning and preparation for this--I know it will be a great success!"

The second e-mail if from a friend of Lisa's, my sister-in-law. Lesley wrote, "It is so wonderful to see your family and friends coming together for Mattie's walk. I continue to follow the blog and fall in love with Mattie. He is so brave, determined, and mature. Even when he has his "grumpy" moments, we are reminded that he is a child and he also has breaking points....his tolerance is greater than most adults. You are succeeding is raising awareness for how horrific cancer is for a family and you have exposed this world to many. I hope Mattie is able to be at the walk and see the outpouring of love for your family. I wish you a beautiful Mother's Day. You have taught me this year how to truly parent. I am a better mother because of you."

The final e-mail is from my friend, Tanja. Tanja wrote, "You guys are my heroes! It amazes me day in day out how you can function and make such informed and critical decisions about Mattie's treatment. I know the decision of the pending lung surgery is a really hard one to make. But I am sure that you and Peter will make the right one. You have proven yourself over and over again that you are always making the right choices regarding Mattie's care. Keep doing what you have been doing. I know it is not easy to see your child in constant pain and discomfort. In addition the uncertainty of which turns and twists Mattie's illness will take on his way to recover are not easy to deal with, too. However, Mattie is such a warrior! He keeps on fighting! One of my colleagues told me just a few days ago that her sister had some major cancer surgeries and is currently undergoing chemo and radiation treatments. What struck me during our conversation was her strong believe, that one has to think positive always. That the mind can overcome anything, even a life-threatening illness. This brings me back to Mattie. He is so strong willed, I can see it in him every time I play with him and it shines through your words in the blog. While his determination and stubbornness can be exhausting and insulting, these essential characteristics are his greatest companions (or wing men). He is so determined and convinced to beat his disease! Katharina is a big Harry Potter fan and not a day goes bye when she does not talk about a scene or words from Harry Potter. Every time she mentions Harry, I think of Mattie - because just as Harry, I so strongly believe that Mattie will be the Boy who lived!!!!"