Wednesday, June 24, 2009

Wednesday, June 24, 2009

Quote of the day: "A friend is one to whom one can pour out all the contents of one's heart, chaff and grain together, knowing that the gentlest of hands will take and sift it, keeping what is worth keeping, and, with the breath of kindness, blow the rest away." ~ Arabian Proverb

Since Mattie slept for a good chunk of the day on Tuesday, it was no surprise that he did not fall asleep last night until 3am! By this point, Peter and I were beyond exhaustion. Peter helped me pack up the room, so that we could be discharged today without much hassle. Peter carried most of our room items to his car last night, so that I only had to worry about Mattie and a few bags today. Even though I had little content to worry about, it still was enough to stress me out. At 2:30am, Peter went home to try to get some sleep in order to function on conference calls today. I am not sure how he does it, because if I stop moving, I literally fall asleep!

Mattie had a hard time waking up this morning. Despite going to bed at 3am, I woke up at 7am, because the IV pump was beeping and the room traffic started. I always wonder why Mattie isn't tired and I am! Besides our huge age difference which could explain a lot, I realize that he gets much more sleep than I do because I spend four to five hours in the morning running interference so he can sleep! This activity alone is exhausting. While he was sleeping this morning, Jenny and Jessie (Mattie's art therapists) came by to let me know that they wanted to take Mattie to the Lombardi Center carnival today. It was outside, and it looked festive. In fact, Jenny and Jessie came by several times to check to see if Mattie was up and wanted to go. They really made us feel included, which I so appreciate. In addition, I had the opportunity to talk with Peggy today, she is the director of respiratory therapy. I was able to give her some constructive feedback about the problems we experienced. Most of my issues were with the process of how the therapy was conducted, but also with the lack of creativity on behalf of the therapists. These folks couldn't move beyond using traditional breathing exercises with Mattie. They never thought about using a harmonica, pinwheels, party blowers, bubbles, and of course Brenna's Sponge Bob boat race. Why do these novel ideas have to come from Linda and Brenna, a nurse? I think that says volumes. Peggy got my point immediately and promises me that she will ask Linda to do an inservice with her therapists. I certainly hope so, but that is one more thing for Linda to add to her plate, but it will be worth it if another child has a better experience in the future.

At around noon, Jenny and Jessie came back upstairs to the PICU to try to bring Mattie to the carnival. But he did not want to go, and in fact, wouldn't even open his eyes, but clearly was conscious during this dialogue. Jenny gave me the wonderful opportunity to go to the carnival to get Ben and Jerry's ice cream, specifically a flavor entitled, Chocolate Therapy! Jenny stayed with Mattie for over 30 minutes. I had more fun in those 30 minutes than I had for an entire two weeks! I laughed, I talked with other parents, and of course connected with some of my favorite people, Brandon, Toni (Brandon's mom), and Jocelyn.

At the carnival, Jocelyn helped Brandon achieve his goal. The goal was to cut his hair, which hasn't been cut for at least 8 months, when his chemo was completed. Brandon told Mattie yesterday that he wanted to get his hair cut to look just like Mattie. If that not touching or what? But Brandon did not just say it, he DID it and Jocelyn helped. I told Jocelyn that if law school doesn't work out, she has another budding career in the making. She did a great job with Brandon's hair and you have to understand that Brandon had hair on his head for 5 people. It is very THICK and has a beautiful wave to it. For me the hair cutting was the highlight of the carnival, and I captured pictures of the stages of cutting. Jocelyn and Brandon are good friends of Mattie's and super supporters. I witnessed and FELT the beauty of a cancer community today. This is something that I normally shy away from, because I live cancer, I don't normally want to socialize in this arena too. But today was different. I credit it to Jocelyn and Brandon's spirit and energy!

Left: The hair cutting process beginning. Can you see the depths of Brandon's hair?!

Right: Brandon is really there under all that hair!

Left: Jey (Mattie's "big brother") came by the carnival and watched the process. Jey is good buddies with Brandon too, and Jey has a way on taking all his "kids" under his wing. He looks out for all of us, and I appreciate Jey's constant concern and support! He is our favorite CT scan tech, and really understands and deeply feels Mattie's illness. Pictured: Brandon, Jocelyn, and Jey. Are you getting the feeling for why it is hard to say good-bye today!?

Right: Have you ever seen two cuter faces?

I have also had the wonderful opportunity to get to know another wonderful Osteo family. We met in clinic and we happened to be in the PICU together this week. Justin is another special individual, and though a teen, I find it fascinating that he has the same physique as Mattie. Tall and slender. But Justin is such a refined and special individual, who tells me that Mattie's battle with osteosarcoma is an inspiration to him. When he thinks he is having a hard day, he just thinks of Mattie, and it helps to change his perspective. I thought that comment was SO mature and thoughtful, because in all reality Justin shouldn't have to deal with any aspect of this devastating disease either.

This afternoon, Junko came by the hospital and brought us a wonderful lunch and gave Mattie some great gifts. But Mattie was in a funk and a terrible mood, that continued for quite a number of hours while at home. Junko helped me pack up the room and carried all my items down to her car, and brought them home for me. So that I only had to worry about Mattie. That was a great help! Thank you Junko for all your efforts and patience today.

Though Dr. Gonzalez joked with Mattie that she did not want to release Mattie today because she was going to miss him, I think a part of her was serious. Mattie has seen Dr. Gonzalez before in clinic, but this surgery experience bonded them together. Mattie, myself, and Dr. Gonzalez have similar personalities, we are all fiery, so we relate very well together. Dr. Gonzalez was a great attending to have on call during Mattie's surgery because she doesn't take no for an answer. If something isn't right, she is on top of it! But we all agreed that Mattie really needed to get out of the hospital today. It was greatly affecting his mood. It is 10:30pm as I write this, and Peter is at the Red Sox game with his family thanks to the generous gift of EXCELLENT tickets with other perks (like parking and food) from the Keefe Family! I am not sure how we can ever thank you, because your whole family has been SO supportive of us this year. To put things into context for our readers, Tim Keefe was in Mattie's kindergarten class last year. Thank you Debbie and Peter for this special gift. My Peter is emailing me back and forth tonight and is having a wonderful time, of course with the Red Sox winning, this definitely lightens his mood.

Mattie and I had a busy afternoon of PLAYING. We did some computer time, read books, had races between a remote control tarantula and car (the car won hands down!), and of course no day is complete without water play. You can see in the picture that Mattie inflated an entire beach ball on his OWN! I would say his lungs are working quite well, wouldn't you? Hard to believe he had major surgery last week on his lungs. But I was thrilled to see him do this, but I am reminded of his weakened condition, because he still needs to rest.

I want to thank the Tilch family for a wonderful dinner and for supporting us on our first night home after surgery! It means a great deal! I would like to end tonight's posting with three messages I received today. The first one is from my friend, Charlie. Charlie wrote, "Another tough day. Sometimes I wonder if it is easier at home or at the hospital and I've come to the conclusion that they are both difficult but in different ways. I am glad that you had a good number of visitors as it seems you were a little less isolated yesterday than you have been recently. I am also happy that Mattie seems to be showing some willingness to do therapy as we all know how critical that will be to his recovery. I do think your idea of having him be an inpatient for therapy and around a lot of other children is definitely worth exploring; Mattie seems to like challenges and games and that might be the right setting for him. Being around other children who are also having difficulties may help him feel a little less self conscious as well. I loved hearing about the snake and Mattie's role as a snake charmer; this sounds like a good addition to the bag of tricks for respiratory therapy. Thank you to the ticket sellers and those who were able to attend the game on behalf of the fund raising. I know that seeing the signs and the pictures of supporting friends means so much to you!"

The second message is from my good friend, Amany. Amany wrote, "On another note, I cried when I read your article today. It was a mixture of sadness and intense pride--to read how you have coped with this and how you have drawn on all of your training and expertise, but more importantly, how you've reached down deep within and tapped into strength and a reserve that I'm sure you didn't know you had, filled my heart and made me realize all over again how proud I am of you. I'm more convinced than ever that your ability to maintain the blog and write the articles in your sleep-deprived and stressed state means that this is coming from your soul and your heart and not necessarily the mind. The mind tires and cognitive functions become impaired (our ability to focus, concentrate and even be coherent is compromised), but the blog shows no evidence of that. It's clear, the blog is coming from somewhere deep within--that's why it has drawn so many of us in and we continue to go back for more. On some level, since it's coming from a deeper place, it speaks to everyone in a profound way and somehow feeds a need for connection, humanity and hope. If we could bottle your spirit and sell it, it would be a gold mine!"

The last message is from my lifetime friend's, Karen, mom. Mrs. Fischer wrote, "I had to let you know that I read your article and was struck with the beautiful and highly professional way you expressed yourself. You managed to summarize what you and your family have been going through -- and convey everything so simply -- including some sensitivity training to the readers who are mental health clinicians. That you are able to do this midst all of the heartbreak, turmoil and exhaustion is truly amazing. It speaks volumes about your brains, your heart and your inner strength. Wish I could be there to give you a hand...and a hug."