Quote of the day:
"Life's not about waiting for the storms to pass...It's about learning to dance in the rain." ~Vivian Greene
It is amazing how a bad day can suddenly be transformed into a good day. What was the secret? Having a team of dynamic people to turn to, who will do just about anything to make your child smile. Sit back and listen to Mattie's fun day!
Mattie was up every two hours last night going to the bathroom, so it is no surprise that Mattie had trouble waking up. He finally woke up at 11am, and when he did he was in a tired, crabby, and grumpy mood. I tried to give him oatmeal this morning and he ate half of it, and then started crying and telling me his stomach hurt him. Trying to get Mattie to describe pain is NOT an easy process. So I couldn't tell if it was from nausea or what exactly was causing the pain. Needless to say, I am more certain than ever that the combination of receiving chemotherapy and being in the hospital can have a dramatic impact on Mattie's mood. This morning was a night and day difference from the boy I brought into the hospital on Monday!
At 11:30am, Mattie had a special visitor. His kindergarten teacher from St. Stephen's came by to work with him. Leslie has a way of making learning fun, so I am not sure Mattie realized he was working on anything per se. They read an Eric Carle book together entitled, "10 Little Rubber Ducks." Mattie liked it so much he asked to borrow it for the week. Leslie and Mattie also did a number game together, and then landed up working on some construction projects out of materials Leslie brought with her. I attribute Leslie's after school construction club to Mattie's fascination with building with boxes and other materials. All I know is this skill has been a life saver this year, because Mattie has turned to these skills and they have helped to occupy his time in a productive manner. Thank you Leslie for the lovely visit and for sharing your time with us, during your spring break!
Toward the end of Leslie's visit Mattie was lying down on the bed and again complaining about his stomach. As Leslie was saying good-bye, Jey (Mattie's "big brother") came to visit him and asked Mattie to sign his t-shirt. Jey was trying to create a t-shirt as a memorial of all the wonderful friends he has and had worked with. Mattie did not want to sign the shirt, so I did it for him! In addition, Jenny also came up to visit and encouraged Mattie to leave the room and visit the playroom. It was at that point that the day started to pick up! I certainly could have encouraged Mattie to visit the playroom, but it is different if it comes from Linda, Jenny, or Jessie. In the playroom, Mattie met up with Meg (one of Linda's interns), Mary (a wonderful volunteer), and Brandon. Yes Brandon! Brandon took the train from his home (which isn't around the corner) to the hospital to visit Mattie. Can you believe it?! Brandon spent the entire day with Mattie. What a special individual. Brandon told me that when Mattie first saw him today, Mattie did not recognize him. Why? Because Brandon has hair and looks great. He no longer looks like someone who is suffering from the effects of chemotherapy. As soon as Brandon started to talk, Mattie recognized that it was indeed his big buddy!
Mattie spent a good chunk of the afternoon in the playroom. Mattie built a boxed structure today. For some reason the box was designed to capture Linda. However, Linda was represented by a blue dinosaur in his play scheme. Mattie has made it clear that Linda is not really a dinosaur, but was using the dinosaur only as a representational version of Linda who can fit in a small box. I would safely say that if Mattie could have Linda by his side throughout the days at the hospital he would. Sometimes play mimics what we wish for in reality. At one point in the afternoon, Mattie headed back to his room, and with him was Brandon, Mary, Meg, and Elizabeth. Let me introduce you to Elizabeth. Elizabeth is a social work intern within the Lombardi Clinic. I have gotten to know Elizabeth over time, and I am impressed with her energy and her efforts to try to engage and play with Mattie. In fact, last Thursday, Elizabeth presented Mattie with two roaches that looked very much alive. She put these roaches in a glass jar and sat them on a small patch of AstroTurf. It is like having a terrarium, except there is no garden in the jar, only roaches. It is quite an addition to our home! Elizabeth and Mattie have a lot in common. So today, everyone was in our room, and Mattie started singing. He has his own made up song, but then it evolved into something familiar. He was signing an ABBA song. Mamma Mia to be exact. He also sang Dancing Queen. I snapped a picture of everyone in our small room as Mattie was creating his song. What impressed me about everyone in the room, is that they really went with the flow and encouraged Mattie to sing and express himself. Check out the troop!
The picture features in the back row Brandon, Mattie, Meg, Elizabeth (sitting on the floor in front), and Mary (in the chair). But the fun did not stop here! Elizabeth went to get her computer. When she came back into Mattie's room, she started to play ABBA music which she had loaded on her computer. Well one thing lead to another and before I knew it, we were in the hallways, walking all over the fifth floor singing ABBA songs. It is a sight that is hard to describe. Nurses, patients, and children were coming out to see us singing. I personally think that hearing roaming singers just made everyone happy, and if not, it at least made them smile. You couldn't help but smile when you saw Mattie's face beaming and singing. Linda and Jenny snapped some pictures of the entire troop!
Left: In the back row from left to right is Jenny (art therapist), Kathleen (Mattie's nurse), Vicki, Elizabeth (social work intern). Mary (volunteer) is in the middle and then in the front row is Meg, Mattie, and Brandon!Right: In the back row is Mary, Kathleen, Vicki, and in the front is Meg, Mattie, Linda, and Brandon.
You can see Brandon and Meg dancing around to the ABBA music. What great sports they were! We did various rounds today. We even visited the transplant unit and saw Tricia, one of Mattie's favorite HEM/ONC nurses. Tricia came over and sang and danced with us. It was hard not to want to join in and have fun with this traveling show!
Mattie had a busy social day. After his traveling concert, he then came back to his room and played with Meg for a bit, and then a volunteer. It is now 8:30pm, and Mattie is eating up a storm. A first for the day! Ellen, our super night nurse, is in with us and Mattie is reliving his day for her.
Tonight it is a matter of continued hydration for Mattie, as well as his first administration of Leucovorin (Methotrexate exerts its chemotherapeutic effect by being able to counteract and compete with folic acid in cancer cells resulting in folic acid deficiency in the cells and causing their death. This action also affects normal cells which can cause significant side effects in the body, such as: low white, red and platelet blood cell counts, hair loss, mouth sores, difficulty swallowing, diarrhea, liver, lung, nerve and kidney damage. These complications and side effects of methotrexate can be either prevented or decreased by using Leucovorin, which provides a source of folic acid for the body's cells. Leucovorin is normally started 24 hours after methotrexate is given. This delay gives the methotrexate a chance to exert its anti cancer effects). We will await his 24 hour blood methotrexate level which will help determine how long Mattie will remain in the hospital this week.
I would like to thank the Doane family for a wonderful lunch today. I loved the BBQ chicken salad and Mattie devoured all the bread and butter. The chocolate was greatly appreciated. Thank you Mary for your lovely e-mail today. Your heartfelt sentiments meant a great deal to me. We also want to thank my Cousin Donna, who lives in Boston, for ordering us dinner tonight. Thank you Donna! Mattie ate up a storm. He loved the chicken and the corn on the cob!
I would like to share a message from my friend Charlie. Charlie wrote, "Given that you spent the day in the hospital, it was a pretty upbeat day overall. It is amazing how much easier two sets of hands seem to make a task like loading up the car; somehow it takes less than half the time it would for only one person. And having a smooth start to the day seems to help keep the rest of it from going off course I find. Sounds like this worked pretty well for you. I really enjoyed hearing about Mattie’s projects and his day. Maybe Mattie can teach a class in yoga for Wii once the treatment is completed. It sounds like he has mastered it quite well in a short period of time. Body control and image has such a big impact on our self esteem and self image that this really speaks positive volumes to me about Mattie’s future quality of life. A comment about the blog in general. I know so many people who read your blog virtually every day, even some who don’t know you or Mattie. You’ve been successful at reaching out and touching hearts across the US and around the world. Many of those people won’t ever post but somehow I know they will occasionally stop and be kinder to someone, say a prayer for another or otherwise do a mitzvah (good deed) for someone else that they might not have otherwise taken the time for because something in the blog touched them. May all good thoughts and deeds reverberate and multiply to create ripples of caring in the world."
In end tonight's blog with ABBA's Dancing Queen. The song we sang around the entire fifth floor of the hospital!
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