Sunday, May 17, 2009

Sunday, May 17, 2009

Quote of the day: "Any man can be a father. It takes someone special to be a dad." ~ Anonymous

I am happy that Peter wrote the blog posting on Saturday because I think it is imperative that you get to hear from him as well. Peter and I are both devastated by Mattie's illness, but our worlds and experiences as it relates to Mattie's care are naturally different for many reasons. Clearly Peter has to work, but I think working full time when caring for a child with a life threatening illness is a blessing and a curse at the same time. I am sure Peter agonizes between guilt and worry about Mattie while he is at work and while Peter is with us is worried about how he will have the energy and brain power to meet his job demands. None the less, I believe that stepping away and having to work and interact with the outside world gives Peter a depth and perspective that I have lost. Not that I want it, and the funny part is now that I have experienced cancer, I have come to personally feel that work is so overrated. I was always so busy prior to Mattie's illness, and in a way being so busy prevented me from enjoying aspects of life. Sad that I had to have this happen to see this.

Peter stayed with Mattie on Saturday night. However, Mattie did not fall asleep until 2:30am! Mattie then had a rough night of jumping up and down going to the bathroom, and during which time had an accident. So of course all the linens needed to be changed. Peter said that Mattie was very embarrassed by this, and Peter totally downplayed the whole incident, which greatly helped Mattie accept what happened. Thankfully Mattie is also taking his anxiety, depression, and ulcer medication. It makes things much easier at home, and we are noticing a major improvement now that he is back on Klonopin for anxiety. For the most part, I am rather conservative about adding medications to address certain issues, but I could see once again, we really had no choice in the matter. Mattie needs acute relief, and if his mood isn't stabilized, I know what can happen. The Fall was a great learning experience for us and with another major surgery in the near future, managing anxiety is crucial. Case in point, Mattie over time has become so anxious, that I can't even touch him with a wash cloth or rub lotion on his skin. Now that he is back on Klonopin, these important daily tasks are manageable. In fact, Peter and I are seeing him take ownership for his knee brace and exercises. He is personally using "George," Mattie's left leg, to push down on his right knee and stretch it. This is excellent progress!

As Charlie astutely observed, when I am overwhelmed, you most likely won't be seeing pictures along with my daily commentary. So today, I will be making up for the last two days. The first picture I would like to share with you is the beautiful collage that Linda made for my family. This collage is deeply meaningful to me and is now hanging in the front hallway of our home. The collage has pictures of nurses, doctors, and support staff at Georgetown who have become instrumental in our life. In addition you can see that all these special individuals signed the matting of the collage. In addition to the collage, Linda wrote us a very special and heartfelt card that I will always hold dear. I realize it is hard to see the full details of the collage from this picture, but I wanted to impress upon you how special a gift it is to me.

While Mattie was in the hospital last week, our neighbor, JP (owner of JJ, our resident Jack Russell Terrier) was in Spain on business. When JP came over yesterday to welcome Mattie home, he gave Mattie a special gift that he brought back from Spain. JP gave Mattie a poster, which pictures a matador and bull. You will notice that Mattie's name is listed on the bottom of the poster. I am not sure how JP accomplished this, but Mattie has now become a famous matador, and is in good company because he is listed alongside other famous matadors on this poster. It was a very special gift, and it too is hanging in our front hallway.

This afternoon, Liza (one of Mattie's favorite hospital volunteers) came over to spend some time with Mattie. In order to get Mattie ready, so I could leave the house, it seemed like a major feat unto itself. Before we left, we have to flush Mattie's central lines, administer GCSF through Mattie's central line (which takes about 15-20 minutes), get Mattie to take his anxiety medication, and his ulcer medication. Some how that doesn't sound bad, but the execution of it seems painful!

While Liza was with Mattie, Peter, my parents, and I all headed to Alexandria to attend Ann's parents 50th anniversary party. We were all honored to be included and to share in the celebration of this special couple. In addition to having the opportunity to get to know Ann quite well this year, I have also had the good fortunate to meet her parents. While Ann, Bob and their children went away over spring break, it gave me the opportunity to visit with Ann's parents in their assisted living community and to get to know them. I have great compassion for Ann's parents because they lost their son to cancer, and on many levels I can relate to their pain. We maybe generations apart, but cancer has united us. The party today was filled with wonderful food and good spirit. I will share some of the lovely photos captured from the event.

Left: Vicki talking to John ("Sully"), Ann's Dad! Peter and Sully get along beautifully, since they are both die hard Red Sox fans.

Right: Ann got some of the kids together today to sing Happy Anniversary to her parents. They were adorable and filled the room with life and activity!

Left: Peter took some pictures of Mary and Sully from their 1959 wedding album. Here you can see them dancing together. The pictures were stunning and really captured the spirit of this couple and the start of their life together. The irony is while I was with Mary today someone asked her if she would do this all over again (I assume she meant marry her husband, Sully.). Mary hesitated. Not because she had any doubt about her marriage, but because she was saying if she could do it all over again, she would want to repeat things without her son developing cancer. I understood her hesitation immediately!

Right: I love this charming picture, in which the photographer captured this couple's excitement about starting their life together as the car drove off.

Left: Some how this silhouette of Mary and Sully just spoke to me.

Right: Vicki, Mary, and Ann holding some beautiful roses from the Doane's garden. We want to thank the Doane's for these special flowers. I was truly touched to be thought of!

I am very thankful that Ann invited us. Peter and I need normalizing events like this and also events to look forward to. In fact, I was looking forward to getting out all week, and this event kept me grounded throughout this week in the hospital. It is also nice to be included into Ann's family's life. It is true that Ann is our Team Mattie coordinator, but to me, she is so much more than that.

When we arrived home, Mattie was having a great time with Liza. In fact, he was moving about on the floor and was animated. He led me into the kitchen. I have always given Mattie a cabinet of his own in the kitchen, where we stores all of his things. Well today he went into that cabinet, and took out every item and WASHED it. He washed it because after the kitchen remodeling that took place this week, everything was a mess. He and Liza actually saved me from doing this, because this was the last cabinet I needed to clean out. Though he had things stacked up all over the place, I commended him on his efforts! He was very proud of his initiative.

We spent the rest of the time this evening doing laundry, watching the Muppets, and sitting around the table eating and chatting. In fact, we dared Mattie to eat. If Mattie complied and ate, then Peter would have to dance like a chicken. So let me introduce you to "Peter the Dancing Chicken!" While Peter was dancing, Mattie got out his chicken that played the Dance of the Ducks/Chickens song! Got to love these two! My parents and I were laughing hysterically over this scene!

As we head into Monday, Mattie heads back to Georgetown Hospital for a Dexascan, or a bone density scan. The scan is designed to assess Mattie's level of osteopenia. Wish us luck.

I end tonight's posting with two messages I received today. The first one is from my friend, Charlie. Charlie wrote, "Wow, the last day of chemo reads like the last few miles of the Ironman triathlon, running with bruises, blisters, exhaustion and dehydration but determined to reach the finish line. I have this mental picture of each of you running this race and handing Mattie back and forth as the one who has been supporting him simply collapses from sheer exhaustion. Peter, you did an amazing job of getting Mattie to the ribbon. You and Vicki have endured so much, it is so hard to believe that there is yet more to deal with. It is hard to understand how a child who can be so mature at some points can fail to understand that taking a medication will alleviate so much of his pain and panic and fight against you so hard. I think we have a couple of things going on here; first, Mattie may now be in the periodic chains of full blown panic attacks; if so, even if he were an adult, it would be almost impossible for him to comply with anything you wanted him to do until it subsided. Second, it may be (and you might want to consider a consult with a pain specialist) that Mattie's nerves have suffered an "insult" from repeated chemo and the surgery and now are responding with pain messages whether or not something is actually happening. This phenomena is well documented and can be treated; it is real pain and needs to be addressed or going forward with therapy may be problematic."

The second message if from my friend and colleague, Lisa. Lisa wrote, "Vicki, I am not in the least bit surprised in Mattie's recent display of fear and anxiety--to me it makes perfect sense. Think of it this way, for many weeks you have long discussed your fear of losing the magnificent support system evinced from the hospital doctors and helpers. You have expressed your worry and anxiety about that "loss" and the "unknown." Similarly, Mattie must be feeling the identical way. He knows that things will change, he will lose his hospital buddies who have become a steady, constant, "dependable support." He must be thinking, "now what?" Also, not only must he be concerned about that change is his awareness about mom and dad's increased anxiety. Even if he has never heard you or Peter mention it, I am sure he can FEEL yours and Peter's anxiety and worry about the future. Finally, my guess is that he knows something about another operation. AND he may be thinking, "he we go again." Something else. What next?I say all this to say: ALL the behaviors, anxiety, worry, "bad behavior" that you described makes sense, is most appropriate and is Mattie's way of saying, "I am scared mom and dad." I hate the word, "normal" and teach my students to avoid this word, but I will use it in this case. I think his behavior is "normal." I am unsure about self-soothing, to me this sounds like someone is trying to apply this concept as the would to an adult or a child who is not faced with the challenges with which Mattie is faced. I appreciate the experts on your case and thus I am not going to de-emphasize there "expert interpretation," but from my vantage point Mattie does an excellent job of self-soothing and managing things on most days and that is "KEEPING BUSY." His way of self-soothing is "doing," "moving," and "directing and being." On the days he does less well he is a 7-year-old with cancer (in pain) doing the very best he can with the life he is living and in a word: he is scared and may not be able to have a conversation about it!"