Quote of the day: "There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love." ~ Washington Irving
I love Washington Irving's quote, because that is just what Peter and I have for Mattie, unspeakable love! Clearly Thursday was a horrible day, so being consistent with our emotional roller coaster ride, can you imagine how today was? If you guessed it was a great day, then you guessed correctly. It was the kind of day you want to try to capture all the sights, sounds, and feelings forever. Mattie had a fun filled day from the moment he woke up.
I arrived back at the hospital at 8:30am today, so Peter could go to work. One would have thought I wiped myself out crying yesterday, but oh no. The crying continued through the morning. It was at that point that Peter rationalized with me that he understood how I was feeling and had every right to be upset, but that somehow if Mattie saw me like this on his birthday, that this would spoil the day for Mattie. I let that sink in, and I pulled it together before Mattie woke up. However, since Mattie did not wake up until 11am, I too took a nap. That definitely helped my headache as well as my mood.
When Mattie woke up, he was greeted by Sarah Marshall. Sarah Marshall is a wonderful, empathetic, and competent HEM/ONC nurse and she was very excited for Mattie today. She even brought Mattie a special birthday gift, which Mattie loves! Mattie had to stay in his room for an hour or so when he woke up because he was getting IV antibiotics. These antibiotics are preventative for pneumonia. While in the room, Mattie had a visit from Meg (one of Linda's interns, or I should say Mattie's racing buddy). Meg gave Mattie a special gift, a musical magic wand. Meg's mom in Georgia helped Meg track down this wand. It is something every great magician needs. I snapped a picture of this dynamic duo today.
Anna, Mattie's physical therapist, also came up to visit Mattie and to get him to move his body. It was hard for Mattie to do PT today since he was hooked up to an IV pump delivering antibiotics, but he managed. While with Anna, Mattie developed a bad stomachache. He eventually decided he had to go to the bathroom. Normally he would be throwing everyone out of the room so he could have privacy to sit on the commode, but he did not ask Anna to leave. I think this is very indicative of Mattie's level of comfort with Anna. I want to remind our readers that this trust was earned. Anna worked very hard for months to build rapport and to get to know Mattie, but once you obtain Mattie's trust, he loves you.This morning I tracked down Linda to find out if she could watch Mattie while I went on campus for lunch with Ann and Ellen. Ann text messaged me this morning and said that she and Ellen wanted to take me out, and remove me from the PICU. They understood how horrible Thursday was for me. I truly appreciate their level of care, concern, and friendship. This meant a lot to me and Linda enabled me to get out. Linda lined up back to back coverage for Mattie from noon until 3pm. I want to thank Jessie, Jenny, Meg, and Linda for coming through for me today, as they do each and every day I am at Georgetown.
I had a lovely lunch, got a chance to chat, and somehow doing this and getting out of my daily nightmare, is always very healing. I consider myself very lucky to have friends who care so deeply about Mattie's situation and its impact on myself and Peter. When lunch was over, I headed to clinic to meet with Mattie's doctors and Ann and Ellen went back to the PICU to help Mattie and Linda prepare for the party.
The party was so memorable and special today. The energy in the room was apparent as was the joy, happiness, and laughter. Mattie was all smiles and full of energy. In fact, if he did not have a bald head and was hopping around, it would be hard to tell he has cancer. He was the picture of life today! I captured a lot of incredible photos (over 100 to be exact) and I feel the pictures will help illustrate this amazing party. But suffice it to say, Mattie had a big turn out of guests!
Left: Brandon and Mattie! Brandon came back to the hospital today to celebrate Mattie's birthday. Brandon not only stayed the entire time, but played with the kids, and also did all the clean up with two volunteers after the party was over. What an incredible young man!
Right: Laura (one of our great HEM/ONC nurses) and Mattie!
Left: Mattie and Sarah Marshall. Sarah Marshall is an incredible person, nurse, and amazing role model for us. She is a cancer survivor!
Right: Linda ordered three dozen glorious cupcakes from Georgetown Cupcake.
Left: Mattie is showing off his cockroach card that Jenny and Jessie designed for the occasion! No bug party would be complete without a few roaches, right? The card was so clever and creative, it was a knock knock joke card. Mattie loved it and it was signed by everyone in the Lombardi Clinic!
Right: I LOVE this picture! Look at Mattie's face as he watches Abigail and Campbell blowing party favors!
Left: Ann brought an excavation project for the kids. The clay was surrounded by spider webbing, which they first had to unwrap, and then dig through to reveal two plastic spiders. I just love the kids with their goggles on!
Right: The digging continued with determination!
Left: Mattie and his birthday buddies! From left to right: Abigail, Livi, Charlotte, Mattie, Zachary, and Campbell.
Right: Mattie enjoyed the cupcake so much, he literally put his face into the frosting.
Left: Christine bought Mattie a can of silly string. After everyone sang the happy birthday song, Robbie, one of the volunteers, surprised the kids by spraying the silly string at them. They LOVED it! They were running around the room collecting all the pieces.
Left: Some of Mattie's fabulous HEM/ONC nurses. From left to right: Kathleen (who wasn't working today, but came into the hospital especially to see Mattie and celebrate his birthday and give him a gift), Sarah Marshall, Vicki, Laura, and Miki!
Right: Meg (one of Linda's interns) and Linda (right near Mattie's IV pole) working hard to make sure the kids were having a good time.
Left: Mattie surrounded by friends and presents. He was thrilled!
Right: Once the present opening frenzy was done, the kids posed as a group with all of Mattie's gifts. In the very front is Livi, in the second row going from left to right is Campbell, Charlotte, Mattie, Zachary, Abigail, and in the back row is Brandon!
I was very happy to see Mattie sharing his gifts with others and not being possessive of all the wonderful things he received.
At around dinner time, Dawnee came to visit us. Dawnee is the former assistant director of the Resurrection Children's Center, Mattie's preschool. Dawnee brought us a wonderful dinner, amazing bread and butter for Mattie (the food of choice!), and beautiful cupcakes from Cake Love. Ann gave Peter and I the opportunity to eat together, while she watched the kids after the party. Peter and I went outside to eat dinner. Despite being windy, we enjoyed the fresh air and the time to reflect on the party. Meanwhile, back in the playroom, Ann was working with the kids on this HUGE t-rex model that the Lombardi clinic gave to Mattie. A gift right up his alley! Check out the finished product!
Left: Charlotte, Abigail, Mattie, Robbie (a volunteer), Brandon, and Colin (a volunteer), and of course T. Rex!
Right: Mattie with Charlotte and Abigail! They were surrounded by Mattie's balloons. All these balloons were floating over Mattie's head in his room. He was loving it!
I tried to include a lot of pictures so you could share in the excitement of Mattie's day. We purposefully tried to keep Mattie's party small today, and will officially celebrate his birthday in May when chemo is done. However, it was wonderful to see Mattie so happy and animated, and I am very grateful to everyone who attended to bring cheer to the occasion. I want to thank Linda for working so hard to make this day special (you succeeded!), for Meg and Laura (child life interns) for entertaining the kids, and I want to especially thank my friends who made today possible. Thank you Lorraine for attending today (you haven't missed a party yet, and it wouldn't have been the same without you), Ann (for everything you do and for being you, we LOVE you!), Ellen (for always being a great moral support and sharing Charlotte with us), and Christine (for your friendship, driving all the kids from school today to the hospital, and for the great balloons and silly string!). We were also thrilled that Zachary could be with Mattie today. Zachary is a loyal friend of Mattie's from preschool, and it is wonderful to see their friendship evolve even under these challenging circumstances. Mattie loved each and every one of his presents. This will be a seventh birthday we will always remember and cherish. I just wish we had more typical childhood days, and after experiencing a day like today, you long for how things used to be. To have a healthy child once again. Something we always took for granted.
Mattie is receiving his last dosage of Ifosfamide tonight, which will conclude the five day cycle for the week. Our plan is to return home on Saturday night, and then play the two week waiting game to see if Mattie develops a neutropenic fever.
I end tonight's blog with a message I received from my friend Charlie. Charlie wrote, "Thursday was clearly a study of contrasts. It was a good and productive day for Mattie, thank goodness and a very sad and difficult one for you and Pete. Such painful and horrible decisions to make; what a position for a mother to be in, that she has to decide how much pain her child will have to face. All I can say is that Mattie is clearly not ready to quit, he is dedicated to getting well and regaining lost skills and your feeling that you have to give him the opportunity to be cancer free is a good one. Try to keep an open mind, do as much research as you can and make the best decision you can knowing that none are perfect and that your love and support will help him through whatever is up ahead. Whatever scars Mattie has and will have from this are matched by the ones on your heart, and hopefully as his fade so will yours. My prayers, the prayers of the support team (they are awesome) of friends both known and unknown across the globe are with you--may the Lord hear them and turn them into the light to guide your family through this to a healthy life on the other side."
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