Happy Easter!

Sunday, April 12, 2009

HAPPY EASTER!

I would like to start tonight's blog with a message I received from my good friend, Lorraine. Lorraine wrote, "Just read an editorial in the Post, "Easter," that I wanted to share with you on what must be a very challenging Easter Sunday. These words seemed to ring so true for Mattie's situation.

In defining what Easter means: ... "a certain reverence toward life and an understanding that between us we can overcome the worst horrors, find consolation in the help and concern of others, resurrect our hopes, and go on." Later the article says that a Cardinal commented that, "everything can stop in a moment. After that, "All that remains is love."

Today was a busy day for Mattie. Peter reported to me that Mattie's fever spiked last night, but so far today, he has been fever free. In addition, Mattie's platelet level is fine. So no more transfusions today. In addition, Mattie's Absolute Neutrophil Count is 80 today, up from zero. So his counts are starting to rise, seems symbolic for Easter day. Peter and Mattie started the day with an egg hunt right within Mattie's room. Thank you Virginia and Jon Morgan for all the wonderful eggs to surprise Mattie with, he loved the golden egg especially!

I arrived at the hospital around 1pm. Before I got there, Linda came by to visit all the patients in the PICU, and she brought Georgetown Cupcake with her. All the children received lovely cupcakes today, and Linda left Mattie with some art supplies, which were VERY helpful to us tonight!

I sent Peter home at 3pm, since he had work to do, and also needed a break. Mattie and I had a full afternoon of playing together. I brought puzzles from home and several of Mattie's favorite board games. We played several rounds of Funny Bunny, a game that his good friend Charlotte gave him months ago. I took a picture of Mattie getting a kick out of beating me badly! The great part of this afternoon is Mattie was standing for most of the time while he was playing with me!

In addition to board games, we made some wonderful paper animals such as an alligator and a bunny! Mattie also wanted to play the car game we made up the other day. We had all the cars out, and Tanja's rubber frog. The frog is the "bad" guy and attacks the cars and the village. We are getting more elaborate on our forms of protection for the cars.

Mattie had two sets of visitors that made our day very special. It really helped to break up our afternoon, since there are only FIVE patients in the PICU. It is like a ghost town here. All the HEM/ONC full time staff are not at work today, and only travelers are working on Easter.

The Bentsen's visited us in the afternoon. Tamra brought her lovely girls to the hospital to host an Easter egg hunt for Mattie. Louise and Meredith (students at SSSAS' upper school) helped me take Mattie into the hallway, and assisted Mattie find eggs. This Easter Bunny really knew what pleases Mattie. Mattie picked up a full basket of eggs and gifts. His favorite gift was an egg that when opened transformed into a dinosaur. Mattie worked on this egg puzzle several times throughout the afternoon. Mattie also loved the minicars from the Lightning McQueen series. But the real hit was the simple fact that the eggs were stuffed with, not candy, but quarters and even a Sacagawea dollar! Mattie personally held onto the dollar! I snapped a picture of Mattie with Louise and Meredith and his basket full of gifts! Thank you Tamra for visiting today and sharing Louise and Meredith with us. You all brought us great Easter cheer.

Louise, Mattie, and Meredith!

This was a weekend we were supposed to be home, with an attempt at having a normal holiday. Ann and Tanja planned a lovely weekend for us. On Friday we were going to color Easter eggs at Ann's house, Saturday we were invited to Tanja's house for an egg hunt and brunch, and today, we were invited to Ann's house for Easter dinner. Clearly, we couldn't go to Ann's house, so Ann brought Easter dinner to us. Despite having hosted Easter dinner and Ann had company throughout the day, in the evening she and Dr. Bob visited us in the PICU. They took Mattie into the hallway for another egg hunt (which he LOVED!), and they gave me the chance to eat dinner. Mattie loved the attention, and it is wonderful that he has this opportunity to interact with Dr. Bob in this fun sort of way. Mattie received two more beautiful Easter baskets today. One from Tanja (thank you!) and the other from Ann and her family. Mattie loved opening up every present and egg. Ann stuffed the eggs with rubber bugs! These were a hit. In addition, there were some other hits, such as rubbery eye balls, which he is freaking me out with, and a cute pig key chain. Of course what would make this pig hot stuff for a seven year old boy? Well the pig poops out tiny brown pellets. Tonight Mattie made a stew out of his bugs and invited Amanda and Brenna (our nurses) in for "soup." They were all good sports, but this was quite a concoction!

In addition to all the baskets and the Easter egg hunt that Ann and Bob brought us, they also brought us an incredible Easter feast. I felt like I was at their celebration! They introduced me to rice mixed with carrots, which was one of my favorite things, along with butternut squash, sweet potatoes, and string beans. I happen to love vegetables, so I truly enjoyed dinner tonight. It is very hard to be "on" 24 by 7, and to also have the energy to play and not be preoccupied with Mattie's illness. Which is why having visitors on Easter made it feel more like a holiday for us. Thank you Tamra and Ann for coming to the PICU today, it really helped.

I had the lovely surprise of receiving an e-mail today from a former student of mine. Ariel was an undergraduate student of mine at GW, and she wrote to me today to let me know that she reads Mattie's blog daily. In addition, she is inspired by Mattie's story that she is doing her research paper of the impact of illnesses on children and their families. She has asked if I could connect her with Linda, since she knows how vital Childlife has been in my family's life. Ariel wants to interview a qualified Childlife professional, and I can't think of a better person than Linda. I was touched by Ariels' e-mail, and I am so honored that Mattie's story has caused her to pause to learn more, to research the psychological impact of illness, and to explore a field that I wish I learned more about in my studies, Childlife. I wish Mattie did not have cancer, and I wish Peter and I weren't in the position we are in, but if we have to be here, it gives me great satisfaction to know that we are doing our part to enhance osteosarcoma awareness within the community.

I end tonight's posting with a message from my friend Charlie. Charlie wrote, "Today is Easter Sunday, the day of resurrection for Christians and one of the intermediate days of Passover. Both holidays make use of eggs to symbolize the endless cycle of life, rebirth of both Spring and the human spirit. May the spirit of the holiday infuse Mattie with the determination to recover from this disease and you and Pete as his parents and guardian angels, the faith and strength to carry him when he cannot carry himself. I believe that when your strength runs out, the Lord will carry you forward on your journey, so I hope you find that faith in your heart when you most need it."

FOOTPRINTS IN THE SAND ~ Mary Stevenson

(Though I posted this poem on the blog before, in light of today, I thought it was worth reposting!)

One night I dreamed I was walking along the beach with the Lord.

Many scenes from my life flashed across the sky.

In each scene I noticed footprints in the sand.

Sometimes there were two sets of footprints,

other times there were one set of footprints.

This bothered me because I noticed

that during the low periods of my life,

when I was suffering from anguish, sorrow or defeat,

I could see only one set of footprints.

So I said to the Lord,

"You promised me Lord,

that if I followed you,

you would walk with me always.

But I have noticed that during

the most trying periods of my life

there have only been one

set of footprints in the sand.
Why, when I needed you most,

you have not been there for me?"

The Lord replied,

"The times when you have

seen only one set of footprints in the sand,

is when I carried you."