Quote of the day: "What do we live for if not to make life less difficult for each other?" ~ Roger Bannister
Before I begin tonight's posting, we would like to acknowledge that it is Memorial Day and we are deeply grateful to the U.S. men and women who died while in military service and for those who dedicate their lives to protecting and safe guarding our freedoms.
Mattie and I were up until around 1am on Sunday, so another long night in the fight against Osteosarcoma. I was happy that Mattie fell asleep a little earlier than usual, because I was wiped out. Mattie did wake up during the night and complained of pain, but he was able to go back to sleep without Morphine. This morning Tricia, Mattie's wonderful HEM/ONC nurse, came in to let me know that Mattie would need another platelet transfusion today. So I woke Mattie up and asked him to take Tylenol, which is one of the premeds Mattie needs before receiving blood products. Fortunately Mattie complied and took the medication orally and then went back to sleep. He wanted pain medication for his mouth, since he appears to have mucositis there as well. But instead of giving Mattie Morphine, he received Vistaril. Vistaril is an antihistamine, and this is the second premedication Mattie needs before receiving blood products. The Vistaril knocked Mattie out until 1pm.
Peter came to the hospital at 10am to relieve me for the day. I packed my things up to leave and Tricia asked if I was okay to drive, since I am sure I looked like a sight. It was a pleasure to be home and take a shower in peace. Ann had invited me to a BBQ at her parent's assisted living community. It was nice to leave my daily reality, and enter the real world for a few hours. Sometimes when I am locked up in the hospital, I forget what month I am in, much less what holiday is approaching. Going to the BBQ today helped solidify for me that it was an important holiday. I had a good time chatting with Mary and Sully (Ann's parents), meeting some of their friends, and hearing music. Mary and I had a chance to chat and she let me know that she enjoys talking with me, which made me feel very happy because in the midst of what I am going through it is nice to know that that I can bring someone else happiness.
Later in the afternoon, I met up with my parents and we went out to lunch. We caught up and chatted about their trip to the hospital earlier today.
While I was out, Mattie had a very busy day filled with visitors. Liza, one of Mattie's favorite volunteers, came by to say good-bye to Mattie. Liza is moving back to NY, and will be doing an internship in New Haven, CT this summer. We will miss Liza, her lovely smile and personality. This is the hard part about getting to know folks at the hospital, these relationships aren't permanent. Mattie also had another visit from the Bentsen family. They have really spoiled us this weekend. They brought Mattie a dozen wonderfully tasty homemade vanilla frosted cupcakes. Peter really appreciated the coffee too, but the gift that truly caught Mattie's attention was the wonderful turtle shaped mood ring they gave Mattie. THANK YOU! The ring reminds Mattie of Roxana, his adopted sea turtle. Mattie received Roxana as a gift from his preschool director. Kim knows how much Mattie loves nature, and she thought Roxana would be a great animal to be able to track on the computer and follow her migration. Below you will see a picture of Mattie's hand and my hand, featuring the turtle ring. Mattie said he wanted to marry me today, and the mood ring is his wedding ring. It is very natural for boys Mattie's age to want to marry their mothers, however, this actually meant a lot to me. We have lived through hell this year, and though this could have torn us apart, it has only brought us closer together.
Left: Mattie's and Vicki's hands! Mattie is featuring his turtle mood ring!
Right: Mattie and Vicki!
At around lunch time, Tanja came to visit Mattie. Tanja is a friend and SSSAS mom. She brought Peter a wonderful lunch, and I appreciate the chocolate! Tanja gave Mattie a digital drum today, and Mattie has been making music ever since. He really loves it. When I arrived back at the hospital today, he played several songs for me, and was moving to the beat. We had a good time, and I loved seeing Mattie standing and using his arms! Thanks Tanja! Peter and Mattie spent a good portion of their day designing a Medieval village. This was an 1600 piece Lego set, which literally took almost all day to assemble! Mattie is very proud of his accomplishment.
Left: Mattie's Medieval Village!
Right: Mattie playing on the digital drum!
My parents spent some time with Mattie this afternoon as well, but Mattie seemed tired and just wanted to watch TV. However, he developed a second wind tonight and now it is midnight and he is STILL very up!
Left: Look at the bin closest to the bed. You will notice the water looks orange. Well apparently this is what happens when goldfish absorb too much water. They become a soggy mess! The kids loved it!
Mattie continues to be severely neutropenic. His absolute neutrophil count holds steady at zero. Mattie will receive MTP-PE on Tuesday and it is our hope that his counts will begin to rise soon. Mattie did have a follow up x-ray today of his right foot (the one with the small fracture in it). The results indicate NO fracture, but osteopenia and swelling (I await for Dr. Bob to confirm this!). Mattie's mood has lightened up, and he doesn't appear anxious or fearful. Peter and I are beginning to see that Mattie fears pain and will try to avoid it at all costs. As he begins to feel better, so does his attitude and his level of compliance to what we ask him to do. This of course isn't rocket science, but I guess we live in a world where we expect children to do what we ask them to do. However, what needs to be factored into these requests is that Mattie has survived two major surgeries and 10 months of chemotherapy. He needs to control certain things in his life because in all reality he has NO control (he has to be inpatient, he has to have surgeries, he has to get chemo, he can't go to school, etc....). So instead he controls how he receives treatment and how he relates to Peter and I. None the less, this has been a frightening and taxing week, and I hope we get a reprieve from these overwhelming mental health issues (I know these issues won't go away fully until they are dealt with, but not being in a state of crisis feels better).
At around 9pm, Mattie had a visit from his buddy Ann, and his friend, Abigail (Ann's youngest daughter, who was a classmate of Mattie's). These two had a great time together, and Erin (Mattie's HEM/ONC nurse) and I were in amazement, because Mattie looked like a different kid than the one we had been working with this last week. It was great to see Mattie laugh, play, and connect with a friend. He has been so opposed to having friends at the hospital, that when Ann suggested this tonight, I wasn't sure what would happen. Mattie and Abigail decided to do water play, but it got very creative. Bins of water came out, rubber bugs were in the equation naturally, and then they added all sorts of things to this concoction like salt, pepper, and goldfish. They enjoyed putting their hands in this mess, and Ann and I tried to capture this moment. Of course it wouldn't be fun unless Mattie got me to put my hands in this sticky mess. I did it, and Mattie loved it. It is also nice to have the opportunity to play and get to know Abigail too.
Left: The initial basin was filled with a sting ray, bugs, and clean water!
Right: Abigail and Mattie laughing over this mess. In fact, Chompy the alligator was also dumped into this bin!
Left: Look at the bin closest to the bed. You will notice the water looks orange. Well apparently this is what happens when goldfish absorb too much water. They become a soggy mess! The kids loved it!
After Abigail left, Mattie was hungry but he did not know what he wanted. Erin came in and offered Mattie a croissant sandwich with cheese inside. Mattie was intrigued and guess what? He ate the ENTIRE thing! Brava Erin! Erin is very good with Mattie, and her easy going demeanor has a way of cutting through Mattie's tensions. Unfortunately I wrote the blog once tonight, but somehow I landed up accidentally erasing the whole thing. I was VERY upset because it was hard to recreate what I originally wrote, especially at this late hour. As I am typing now, Erin encouraged Mattie to draw her a picture. So thankfully Mattie is busy drawing her a flower, and I am typing away. Here is a picture of the flower! He is now working on a tree for Erin!
I end tonight's posting with a message from my friend Charlie. Charlie wrote, "After so many changes of attitudes and emotions it is really hard to believe that Mattie might be over this "hump" at least for a while. It seems that this particular downturn has been with us for longer than most in the last several months. It is hard to know what is driving this (pain, boredom, medication, or some combination) but whatever it is, it makes life very difficult for everyone around Mattie right now. So it was especially good to see the Mattie smile reappear on yesterday's photos. It is also difficult not to know when Mattie's numbers will start to improve (or if they will without intervention) so that you can start making plans to go back home for a while. Everyone's exhaustion comes through in the blog; I hope Peter got to sleep last night and that you are able to trade off and catch some sleep as well soon. And of course, I hope Mattie's emotional level stabilizes so that play dates are once again on the schedule."
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