Quote of the day (Thanks Camille!):
"When we come into the present, we begin to feel the life aroundus again, but we also encounter whatever we have been avoiding. Wemust have the courage to face whatever is present/our pain, ourdesires, our grief, our loss, our secret hopes our love/everythingthat moves us most deeply." ~ Jack Kornfield
We have accepted the fact that we will be up every two hours this week, while Mattie is on Ifosfamide and Etoposide. It isn't easy, but it just is the reality of the situation. Peter and I tried to break up the night duty. He took the first shift and I took the second. Mattie woke up today in a much better mood. Kathleen was our nurse today, and Kathleen and Mattie have a routine together. Mattie likes to search through Kathleen's pockets. His curious left foot will sneak right into her pockets and literally he picks out the contents. Kathleen surprised Mattie later in the playroom with something very unexpected in her pocket! Which I will tell you about later.
I now bring oatmeal packets to the hospital with me, because Mattie refuses all hospital meals. But one thing I notice is that I can now leave the room for a couple of minutes to heat up foods without Mattie panicking. This is real progress! Meg came by to visit Mattie this morning and she alerted us that Linda was back! Mattie was thrilled and literally wanted to jump into his wheelchair to go find her. He carried with him the two pins he made for Linda yesterday (one is a cockroach and the other pin said "Lovely Linda" on it). Last night we wrote on Linda's dry erase board, "Welcome Back, Love Room 10" and then we drew a heart and inside the heart we wrote, "We love Linda."
Mattie found Linda right away and he was very happy to see her. Linda got a kick out of the cockroach pin, and she is a real sport because she even wore it for Mattie today! Though Linda had a ton to catch up on today since she had been out last week, she found plenty of opportunities to play with Mattie today. She gave Mattie a lego set, which kept him busy for quite some time. Mattie also received more hotwheel cars from Linda today, and Mattie and I had a good time playing together in the playroom. While Mattie was in the playroom, Kathleen walked in with Sarah Marshall (another fine HEM/ONC nurse). Kathleen came up to Mattie and encouraged him to check her pockets. So he did! What he pulled out was a riot! I wish I had my camera with me. He pulled out a big pile of gak or in essence some sort of goopy substance. It was bright pink and very slimy. Mattie loved it! He then asked me to go back to the room, to get the "potty putty" Mattie received from Ann. Well the playroom turned into a very noisy zone, full of bathroom sounds that only a six year old boy would find pure joy in! He had the nurses laughing!
Soon there after, Jey came to visit. Jey got a kick out of the pink gak and putty! Jey has a good sense of humor and really played along with Mattie. Food was brought in today for lunch for all the families in the PICU. Linda delivered us a cheese pizza and Mattie helped himself to two pieces. Then we had a visit from Catherine M. Catherine is a RCC mom, and though I never met her while Mattie was in preschool, Catherine is supporting us and delivered us a lovely lunch. She even gave Mattie a wonderful riddles book! Mattie had two lunches and the way to get him to eat is through distractions. He gets busy doing things, and I find a way to shovel food into his mouth. In all reality he was like this when he was a baby! We have come full circle on his eating patterns.
At around 1:30pm, Anna came to work with Mattie. Anna came armed with activities to get Mattie moving. I have had a hard time getting Mattie up and moving at home. I get frustrated sometimes with Mattie's unwillingness to help himself. Everything with Mattie has to be subtle, you just can't do exercising, you have to play a game, or distract him with watching a movie and then grab his leg and try to stretch it out. Again, this is no revelation to working with a child. Everything is done through play, however, you have to understand Peter and I are becoming burnt out parents, and it is very hard to be able to serve these multiple roles: parent, advocate, nurse, mental health counselor, and physical therapist day in and day out.
Physical therapy today was very memorable. We all got a work out. Jessie came up from the clinic, and Linda joined us as well. What followed next was a riot. Anna got Mattie stomping his right foot on the ground, by hitting a leg pump which sent a rocket filled with bubbles into the air. I took a picture of this activity, and you can see Mattie staring up to the ceiling while watching the rocket.
After this activity, we then played a new kind of Twister. Only two of us could play at a time, and Mattie was calling the moves. Below you can see what he did to us as he called the colors that we should place our hands and feet on. We allowed him to turn us into pretzels, so that he would be cooperative to our request to walk later in the session.
You can see Anna and I beginning the twisting process. Which only got worse, until I ended up all balled up!
Mattie decided to pose for us on the Twister mat!
Mattie made Jessie and Linda do these Twister exercises too, but eventually it was his turn to walk. So Mattie strung together plastic cones and made a cone like tail and attached it to his posterior walker. He then had us walking behind him in a conga line. Literally we were singing while trailing after him in the hallways. People came out of their offices to see this caravan in motion. We sang things like 1, 2, buckle my shoe, 3, 4.....
From left to right: Linda, Jessie, Mattie, and Anna
After this wonderful PT session, Mattie headed back to the playroom with Jessie. Together they blew bubbles, but not ordinary bubbles. These bubbles looked like plastic, because they never popped. After Mattie made a mess, he literally took it upon himself to clean it up. Jessie and I helped him. They then did some crafts together and even used a spin art paint wheel. Mattie had a full afternoon. But it did not end there. Literally by the time we left the playroom, Mattie was surrounded by four female volunteers, myself, and Linda. He got them to do an art project with him and then they had an art contest.
At around 4:30pm, Mattie was visited by Mary Dressendorfer. Mary is the director of technology education at SSSAS, and she is Mattie's technology teacher. Mary is just a sweet soul and has such a calming demeanor. Mattie was excited to work with Mary today as he headed back to his room. Mary came to design valentine's day cards with him, but I forgot his mac computer at home. So much for my memory. Mary worked with Mattie using clip art on my computer. Mattie is learning some good computer skills in the process. Mary also brought Mattie a beautiful t-shirt with a charming frog on the front of it from her trip to Costa Rica. Mattie and Mary had a good time together, and he was pleased to show me his computer creations. Thank you Mary for your kindness and your generosity of time.
Dr. Bob also came by tonight to check out Mattie's left arm. Bob had some useful suggestions that Peter and I can follow and will be coming by tomorrow to derotate Mattie's arm again. At which point, Mattie will wear a sling to bed, and also will wear his pj top over his arm (we will not pull his arm through the sleeve, in hopes that having a shirt over the arm, will keep the arm in place). Anna did tell me today that the stretching I am doing to Mattie's right leg is helping extend his leg out straighter. So I took that as positive feedback and I will keep doing this while Mattie watches TV.
We want to thank the Keefe family for a wonderful dinner tonight. The curry chicken and rice were delicious. Thank you for the homecooked meal! The scooby doo pasta was also appreciated by Mattie, along with the shake. I literally ate all the fruit the Keefe's brought us while typing this blog! Much thanks for all the support.
I would like to share two e-mails I received today. One is from Mary D., a fellow RCC mom. Mary wrote, "For the first time ever, I found myself several days behind in reading the blog. I spent tonight catching up. What you write in your blog is truly inspiring on so many levels for all of us and gives me such perspective. I didn’t realize how much I missed hearing about what was going on in your lives and catching up on how Mattie is doing. You all continue to amaze me on so many levels. There have been so many things you have written about over the last several months that made such a connection with me. For instance, I worked in DC for many years and loved eating at the Magic Gourd. I haven’t been there in years. Also while working in DC, I remember that my association’s CEO used to get his hair cut at the Watergate Barber Shop, also by Melo. When I first started reading the blog, Mattie was very into Scooby Doo. The funny thing about Scooby is that while planning a 450-person conference in Las Vegas at Caesars Palace last October, my Reservations Manager (have known her for years) inadvertently sent me an e-mail that was supposed to go to the group coordinator who was booking guest rooms for Scooby Doo, as he was making an appearance in Vegas. When you wrote about the Muppets, Mike and I just laughed and it brought back so many wonderful memories that we had from watching the Muppets. In fact, someone sent me a “Ma Na Ma Na” song clip that was Pittsburgh Steelers related just before the Super Bowl. It was done as a play on the last name of one of their infamous players. When you sent the link for the Mary Tyler Moore theme song, it really made me laugh. I had a good friend that I have lost touch with that used to sing that song to me. I just want you to know how much we all admire you, Peter and Mattie. You give us all HOPE. You handle every situation so incredibly well. Without even realizing it, you have taught us all some powerful lessons about life and Motherhood. It is no wonder Mattie is such an amazing child. In catching up with the blog tonight, I also realized how much I missed Mattie’s smile. It makes my night!"
The second e-mail I received was from Charlie. I hope you enjoy the "I Believe" poem as much as I do!
I Believe... That just because two people argue, doesn't mean they don't love each other. And just because they don't argue, doesn't mean they do love each other.
I Believe...That sometimes when I'm angry I have the right to be angry, but that doesn't give me the right to be cruel.
I Believe....That we don't have to change friends if we understand that friends change.
I Believe...That no matter how good a friend is, they're going to hurt you everyonce in a while and you must forgive them for that.
I Believe...That true friendship continues to grow, even over the longest distance. Same goes for true love.
I Believe... That you can do something in an instant that will give you heartache for life.
I Believe...That it's taking me a long time to become the person I want to be.
I Believe....That you should always leave loved ones with loving words. It may be the last time you see them.
I Believe... That you can keep going long after you think you can't.
I Believe...That we are responsible for what we do, no matter how we feel.
I Believe....That either you control your attitude or it controls you.
I Believe...That heroes are the people who do what has to be done when it needs tobe done, regardless of the consequences.
I Believe...That money is a lousy way of keeping score.
I Believe...That my best friend and I can do anything, or nothing, and have the besttime.
I Believe...That sometimes the people you expect to kick you When you're down, willbe the ones to help you get back up.
I Believe...That maturity has more to do with what types of experiences you've had,and what you've learned from them.....and less to do with how many birthdays you've celebrated.
I Believe...That it isn't always enough to be forgiven by others. Sometimes, you have to learn to forgive yourself.
I Believe....That no matter how bad your heart is broken the world doesn't stop foryour grief.
I Believe...That our background and circumstances may have influenced who we are,but we are responsible for who we become.
I Believe...That you shouldn't be so eager to find out a secret. It could changeyour life Forever.
I Believe...Two people can look at the exact same thing and see something totally different.
I Believe...That your life can be changed in a matter of hours by people who don't even know you.
I Believe...That even when you think you have no more to give, if a friend cries out to you........you will find the strength to help.
I Believe...That credentials on the wall do not make you a decent human being.
I Believe...That the people you care about most in life are taken from you too soon.
I Believe... The happiest of people don't necessarily have the best of everything; They just make the most of everything. Thank you God for all the wonderful people who help us throughout the journey of life.. Everything happens for a reason... May Angels guard you and guide you.
As I sign off tonight, Mattie watched the movie, "Space Buddies" that Linda gave him. Mattie was very excited to see it, and somehow Linda always knows just the right thing to give Mattie. Mattie has been sick to his stomach tonight. We resorted to giving him 1mg of Ativan at 10pm. I made the mistake of not giving his Vistaril (the antihistamine) prior to chemo. Clearly he does need it, and the Kytril alone is not sufficient enough as an anti-emetic with these powerful chemo drugs. I won't be making that mistake tomorrow night! I have found through all of this, that I occasionally need a little humor. I happen to love this youtube clip entitled, "Mom's Overture!" I saw it last year, and at the time I could relate to it very well. However, this year my mom role is VERY different. Maybe I should consider writing the Cancer Mom Overture! Enjoy!
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