Quote of the day: "During chemo, you're more tired than you've ever been. It's like a cloud passing over the sun, and suddenly you're out. You don't know how you'll answer the door when your groceries are delivered. But you also find that you're stronger than you've ever been. You're clear. Your mortality is at optimal distance, not up so close that it obscures everything else, but close enough to give you depth perception. Previously, it has taken you weeks, months, or years to discover the meaning of an experience. Now it's instantaneous." ~ Melissa Bank
We are definitely perfecting our depth perception and I think this quote captures the essence of what I have been saying. Cancer has a way of changing how you look at things and prioritize things in your life in an instantaneous fashion. Mattie slept in this morning, but when he awoke, I helped him get changed up and then assisted him in eating oatmeal. Mattie is working on using his hands and arms, but he still is unable (or doesn't want to) to feed himself using a fork or spoon. Mattie has very little independence now, and I wonder why Peter and I are tired most days. Well as I have had the luxury of sitting back this week while trying to recuperate, I have observed what gets done for Mattie in a given day. Not only are Peter and I Mattie's constant play buddies (which sounds cute, but after so many hours of playing, most adults, even the best ones, get wiped out), but we have to clean, dress, feed, and medicate Mattie. It is like taking care of a newborn, however, it is more complicated. Because the newborn in this case is a six year old, with a mind of his own, a lot of pent up energy that isn't being used physically, and he is dealing with a bunch of emotional baggage from his illness. Now this describes a good day. On a bad day, also factor into the equation that we are living in a hospital and managing the staff around him who are providing medical care. When I look at it this way, I see why I am sick, and I see why Peter and I are so tired.
At 10:30am today, Mattie had a visit from Dan, his in home physical therapist. We prepared Mattie for Dan's visit last night and this morning. We told him it was going to be a short visit because he then had an appointment at the Lombardi Clinic. We tried to get Mattie excited to show Dan his physical accomplishments, and as always spoke to him about the importance of working with Dan and Anna (his PT in the hospital). When Dan arrived, I went upstairs to lie down, since I am going on day 6 of being ill. However, even with clogged ears, I could tell that the session wasn't going well. I could hear that Mattie was hiding on Dan and when Peter encouraged Mattie to come out from behind the couch or table, Mattie started to cry, and that basically was the end of the therapy session. Mattie shut down. I am concerned about how Mattie relates to Dan. I think Mattie is closed off to physical therapy and therefore is making it extra challenging for Dan. I remember when Mattie started occupational therapy years ago with Kathie. It wasn't pleasant then either and it took Kathie a while to break through, but it happened, and now they fortunately have a great rapport. But now the stakes are even higher. Mattie needs physical therapy in order to regain function and his life back. So on one hand I understand where Mattie is coming from and his need to ease into this, but on the other hand, I am impatient with this behavior because he has the control in the palm of his hands to make things better for himself. To say I am frustrated is an understatement today and Peter felt the same way.
After this session, Mattie then got his socks and shoes on and headed to the Lombardi clinic. At the clinic Mattie was greeted by Jenny. Mattie and Jenny had a good time together and they designed two wonderful items that came home with him. Mattie created his own version of a bicycle helmet, as you can see from the picture, the helmet is quite boxy,and has its own reflective tape! You won't miss Mattie coming with this on his head. The other item he created was a dog house for his Scooby Doo keychain. Amazing how Mattie can transform a box. Inside Scooby's house there is a couch, dog bowl, bath tub, and TV. Scooby also has a rooftop terrace, and flashlight skylight! Thank you Jenny, Mattie had a good time today! Mattie's absolute neutrophil count was 500 today, it was 2500 on monday. So technically Mattie is now neutropenic, but the question is will he get sick? So far it is hard to tell! So we wait and keep feeling his far head for a fever or observe him for anything out of the ordinary like a stomachache.
Mattie and Peter arrived home just after lunchtime. Marilyn (one of Mattie's former preschool teachers) provided us with lunch today. We loved the homemade tomato soup. Mattie actually ate it. This was amazing, he said it smelled good and drank a whole cup full. Wonderful. Thank you Marilyn for the bagels, clementines (my favorites!), and the brownies. But the big hit today was the massive Scooby Doo balloon. I am not sure who this balloon made happier... Mattie or Peter. Some of you may recollect that Marilyn gave Mattie a Scooby Doo balloon last week, but it flew away from Peter and Peter felt just horrible about this. Marilyn saved the day, and today Mattie was the proud recipient of a balloon that is half his size. Mattie was happy to pose for a picture with this great balloon. Thank you Marilyn for bringing a smile to our home today!
Later in the afternoon, we received a special care package from Bob Weiman (Mattie's Head of the Lower School at SSSAS). Bob made homemade Matzo ball soup that was delicious and medicinal! Bob calls Matzo ball soup, Jewish penicilin. I believe it! Bring it on, I could use as much as I can get. I enjoyed the soup today, and I appreciate the thoughtfulness behind it. Bob, we appreciate all your support from e-mails, visits, and magic tricks. Mattie received a dizzy dice magic trick today from Bob. I told Bob that I am now getting the hang of how to do some magic tricks, because I got the dice trick right away. I told him he is a good teacher because magic doesn't come easily to me! I love watching it, but performing it is a different story. Mattie will love to add this to his repertoire.
This afternoon, everything possible that could wrong with a computer happened to mine. Me without a computer, is like a bird without its wings. Thank goodness Peter understands computers, and after several hours of maintanence it is up and operational. This afternoon, I had the opportunity to play with Mattie. We played in the tent, which is taking up his entire room, and we went around the house playing with walkie talkies, we played hide and seek, played with his air craft carrier toy, and we even watched a movie together. It was a full day. This evening we had a visit from the Coker family. They hand delivered us a lovely dinner of homemade lasagna, salad, and these amazing chocolate dipped cookies. Of course Peter's favorite was the hoodsie cups, which any good Bostonian would know these are small cups filled with Hood ice cream. It was wonderful to see Ellie and Gavin too. Ellie went to preschool with Mattie and she created a lovely New Year's card for Mattie and also gave Mattie a "blue lobster" stuffed animal today. The blue lobster is a lot of fun because you can create a virtual world for him to play with at http://www.seapalsworld.com/. Peter and Mattie had fun exploring this world together with Blue Lobstery (Mattie's name for the lobster)!
On the electronic front we want to thank Brian Boru, Rosalinda, Jacky, and Karen for the wonderful e-cards and e-mails today! As many of you know from reading last night's blog, I have become friends with another mom who has a son dealing with osteosarcoma. Kristi lives in Nevada and she referred to a poem on her blog entitled "Cancer Shoes." I asked her to share it with me. Thanks Kristi! I hope you all enjoy it. It does capture the essence for how I feel some days, but one thing is true, once cancer has come into your life it is here to stay, it will always be a part of our world.
Cancer Shoes ~ author unknown
"I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them. I get funny looks wearing these shoes. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes. To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off. I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I am a woman who has a child with cancer. I will forever walk in these shoes."
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