Friday, October 17, 2008

Friday, October 17, 2008

This morning started with the massive scramble of packing up the hospital room, and transitioning home. Certainly a wonderful problem to have, but after several move in and move out dates since August, the whole event gets wearing, and it is an event! Mattie's nurse Miki helped to discharge us. Miki is a VERY special nurse and person. She always advocates for Mattie and for us, and we always know we are in good hands with her. She appreciates Mattie for who he is, his interests, and even his moods. What I find so amazing about Miki is that she truly cares about us and does her job with both skill and compassion. Today Miki handed me a prescription that was written for Mattie to take at home this weekend. The prescription was for dexamethosone. This is a steroid that is used in the treatment of nausea and vomiting caused by chemotherapy. Any case, Mattie has been on the steroid all week to help prevent emesis. What I found out though is once on a steroid, you have to taper down the dosage, because it could cause ill effects if you stop taking it all at once. Mattie's dosage has been tapered off for the past two days at the hospital. In my opinion enough was enough, and I did not want him to take anymore of it. I feel the steroid plays with his mood and personality, and since Mattie did not have to take the steroid last weekend at home and he was fine, I felt there was no need for it this weekend. So I told Miki I wasn't happy and wanted to talk to the doctors. Miki was on top of it, and tracked down the doctors. I discussed my concerns with the resident, Dr. Cantor, who has been through Mattie's treatment process with us from day one. Guess what, do you think Mattie is taking the steroid this weekend? If you guessed not, then you guessed correctly!

We headed home and started sorting and unpacking things! Mattie decided to take it easy, but was starving and requested homemade pancakes. I stopped what I was doing, ran out to get eggs (but being in the city, running out means a short hop and skip to pick up eggs in our complex), and then came home and started cooking. Mattie ate four huge pancakes. Then he was very motivated to get washed up and dressed because he was going to Charlotte's house for a playdate. He even brought two of his new toy cars to Charlotte's because he wanted her to see them. Mattie has remote control cars that climb walls and can also drive on the ceiling. Totally amazing stuff! Mattie spent the afternoon with Charlotte, and Ellen (Charlotte's mom) gave me a huge gift of time. I went out to lunch with my parents and had the chance to eat food without having to rush and swallow it whole! There is no peaceful eating at the hospital. As I put myself in Ellen's shoes today, I would imagine I would have been very nervous to be solely responsible for Mattie. Afterall, he is six, and he wants to swing, jump, run, and so forth, all of which needs to be supervised so he doesn't fall and hurt himself. Mattie in a way is a big responsibility to take on, but Ellen embraced this opportunity and clearly Mattie had a blast. Thank you Ellen for your willingness to do this, for giving me a moment to breathe today, and for being such a good friend. Ellen reported that Mattie ate quite well this afternoon too! Music to our ears. When I came to pick up Mattie, Ellen told me that St. Stephen's football practice was taking place and wondered if Mattie wanted to go see the team as well as Head Coach Dave and Coach Jenney. Mattie was hesitant at first, but then decided he wanted to go. When we arrived at the upper school, Coach Dave spotted my mom and he instantly knew that Mattie had to be on campus. Coach Dave gave us a huge greeting and spent a lot of time talking with us. Dave is a very special person and coach, and I told him it meant a lot to me that he supported my decision to tell Mattie about the pain and immoblity he was going to be experiencing next week. The team took a break for a few minutes, and each of the players came up to Mattie and shook his hand. It was priceless, and then the team agreed to a group picture with Mattie. These fellows are quite an impressive group of young men, who happily complied with our desire for a photo, and even told Mattie how proud they were of him. You can see the picture of the Saints team below. Quite a picture, no?! There was an overwhelming level of energy and spirit I felt just being next to this group of guys.
After the photo was taken, Coach Dave lead the team in a cheer. Coach Dave said, "one, two, three," and the Team responded back by SHOUTING "Mattie!" It was a sight to see, and I got it on video tape. Mattie watched it several times tonight! In addition, Mattie got the chance to see Mr. Larry Jenney. Larry is a coach on the team, and is one of Mattie's kindergarten teachers from last year. Mattie was very happy to see Larry and as always it was wonderful to reconnect with this very talented teacher. Dave and Larry are incredible role models for these young men, because they are bright, dynamic, strong, and at the same time sensitive men. I told Dave, he is giving me a greater appreciation for football.

After this amazing team experience, Mattie and Charlotte were running around the fields at the upper school, simply enjoying the freedom and each others company. Below you will see a picture of them running around. For me, it was a joyful sight to see, in the midst of a difficult week. Seeing Mattie run around is glorious and at the same time frightening. It takes a lot of discipline for me not to panic when I see him running, or climbing the bleachers in croc shoes of all things (NO support!). I have seen what happens when he scrapes his knees, and it is a scary picture. But I know that he needs a certain amount of freedom, and I also know that he is very cognizant of his body. So part of me has faith in him.





Mattie and Charlotte running around!







Mattie and Charlotte gave each other a huge hug before the playdate ended, and we headed home and then my mom played with Mattie for several hours while my dad and I dealt with the laundry. There is something very satisfying about completing such a mindless task. Then we all convened and had dinner together. Thank you Liza May and Jennifer Greiner for all the wonderful food you brought to us today. The salads, soups, pastas, and breads are all finished. Jennifer, Mattie loved your ghost cookie, and Liza, the Saints brownies are VERY special. The perfect gift for a chocoholic!

We had a visit today from JJ (our resident Jack Russell Terrier)! JJ somehow senses when Mattie is back home, and he came racing down to see Mattie. JP, JJ's owner, told me that his mom (Jacky) in Spain has arranged a perpetual novena to St. Rita. St. Rita is the patron saint of impossible or lost causes. JP's mom prayed to St. Rita when JP developed polio as a child. Needless to say, Jacky's prayers were answered and JP survived polio. Jacky has been praying for Mattie each day since he was diagnosed. Thank you Jacky!

There are several people we want to thank today. Ellen gave me two large tupperwares full of homemade soup. She told me that Candice made the soup for us. Though I do not know Candice, I am so grateful that she shared her time and generosity with us to make these soups. We will thoroughly enjoy them. Mattie received a lovely gift from his friend Liliana. Thank you Liliana for the great photos of you, and the halloween gifts. We really loved the gummy tarantulas and guess who loved the chocolates? We also want to thank SSSAS' french club for their donation to the Mattie fund. That was very special, and I have a feeling Liliana's mom (SSSAS' upper school french teacher), played a hand in this! Mattie wants to thank his feline friend Brian Boru. Brian always picks out great gifts. We love the cribbage board, the dino books, special bookmarks, and the airforce water bottle. Also Mattie acquired a Big stuffed JJ today from our neighbor, Cynthia. We can't wait until the real JJ sees the stuffed animal. Lastly, we want to thank GW's Columbian Women for their cards, gifts, and the classic Animal Stories book we just received.

It is a rather sad commentary these days, but life is so busy and Peter and I are going 100MPH, that sometimes our meaningful communications occur now through e-mail. Since Mattie is up at all hours, and we are usually in a hospital setting, it doesn't leave much time to connect, talk, and process things. Fortunately Peter and I have been married for 13 years and have known each other a total of 21 years, otherwise, I could see this crisis with Mattie could easily do a number on a marriage. Peter wrote the following below:

"Sunday night, I slept only one hour, and around 4am my time, one of my team members, Supo, in Nigeria (which is 5 hours ahead of us), Skyped me asking if I could have a quick call with him… something personal. Of course I said yes, since I need to support a team member regardless of the geographic distance between us, so Supo called me, and asked if we could pray. Supo said a beautiful prayer to our lord almighty for Mattie and for his parents, to give us strength, to send his support in his many messengers, and to surround us with his love. Although the call took only 2 minutes, I found myself still processing this once we hung up and continue to do so. This experience gave me hope… that such unusual circumstances, me being sleepless all night, and a friend from afar, should reach out to me, and that we had perfect connectivity between Nigeria and the US (which is rare to find), and to receive such a wonderful message. It was a reminder to me that Mattie must be among divine intervention, and that the lord has heard all of the prayers of love and support and help for Mattie. It was almost as if a message had been sent to me through Supo."

As many of you know, I have spent a couple of nights this week sleeping at home, while Peter stayed in the hospital with Mattie. Peter wrote to me this morning and said, "for three nights in a row now, including tonight, Mattie and I have had some very serious and mature conversations about his situation. He and I has spoken about the surgery, the new bionic arms and leg. He is definitely comfortable with things now. He even asked me tonight why the wrist wasn’t getting one too. It was almost as if he was disappointed. We have talked a lot about the cuts, the pain, and that things will take time for him to get his strength and movement back in his arms and leg. He even chuckled when I told him that once the metal bones were in his body, that he probably set off the metal detectors at the airport. He got a huge kick out of that. I also showed him where his metal bones will be and explained how the graft would work taking bone from the leg to use in the wrist. So I hope this is helping as he seems comfortable talking about it."

I received this lovely e-mail today from Emily W, which I would like to share with you. Emily is a graduate of GW and also babysat Mattie on many occasions. They became good buddies. Emily wrote, "Mattie is in fact my superhero...he's my Mighty Mattie...but do you know how Mighty Mattie became so Mighty??? He got it from his.....
MIGHTY MOM!!!
Just wanted to make sure you knew where real superheros came from....in case you didn't already know..."

On the electronic front, we want to thank Kim, Karen, and Susan for your wonderful e-cards! As we head into the weekend, I am trying to plan a lot of fun activities for Mattie before he heads into surgery on monday. The irony is Mattie said to me tonight, "I was in the hospital this week, why didn't they do the surgery when I was there?" He seems ready for this now, but I am noticing Mattie is also struggling as he tries to understand why he is getting so much attention from everyone. He questions why this did not happen before he was sick. So we are working through the issues associated with this specialness. In any case, thank you for staying connected with us, for following the blog, and for all your good thoughts, hopes, and prayers as we head into monday!