Sunday, July 5, 2009

Sunday, July 5, 2009

Quote of the day: "Love is the strongest force the world possesses, and yet it is the humblest imaginable." ~ Mahatma Gandhi

Though we were staying in a hotel room for the last two nights, all of Mattie's medicines and IVs came with us. This should give you some feeling for what packing was like for us. We had to bring a cooler with us too, that we constantly kept filled up with ice, so that the refrigerated medicines could stay cold. Thankfully that worked well, and thankfully Peter is ingenious and figured a way to hold the IV fluid bag over Mattie's head at night (since this IV runs through a gravity drip, and must be held up high enough over Mattie's head to work), since we did not bring the IV pole. Peter literally tied a string to an air vent in the room, which was near the ceiling, and the bag hung from this string. It worked like a charm, and Mattie successfully got his fluids at night. Mattie woke up naturally at 11am today, which was great, since we had to check out at noon. While I was getting Mattie ready for the day, Peter carried things to the car. I asked Mattie if he wanted to play by the pool this morning before we left, and he seemed amenable to that. We brought a box of Legos with us, and Mattie seemed determined to work by the pool on this project. When we got to the pool, I settled him in, and we ordered lunch. I am happy to report that Mattie ate all his lunch!

When Ann's children arrived at the pool, Abigail, Michael, and Katie came over to say hello. They wanted to know what Lego he was working on, and Mattie seemed okay at that point. However, as more people showed up at the pool and more kids were around Mattie, I could sense his level of agitation rising. He did not want to work with others on this Lego set today, like he did yesterday. So Peter wrapped up all the pieces, and tried to redirect Mattie. However, Mattie was getting moody, and I decided to take him for a walk on the property to change his scenery and to discuss what we could do to make the environment by the pool better for him. After all, my main goal was to encourage Mattie to participate socially with the other children, and if there was some information or insights he could share with me that would help him, I wanted to know about it.

We had a nice walk together, and were away from the others for about 30 minutes. When we got back to the pool, Mattie was eager to find Ann and Abigail, and he wanted to tell them about some of the things he saw on his walk, particularly about a playground. Mattie also seemed to enjoy watching Dr. Bob and some of the other kids going down the water slide, and we moved Mattie closer so he could get a better view. In fact, Abigail and Jackson (Liz's son, a friend of Ann's), sat with Mattie watching how people slid down or got stuck inside the water slide. In typical Mattie fashion, he shied away from the camera, and Abigail also followed suit. Though Abigail likes taking pictures typically, when she is with Mattie she adopts his strategy. I think it is one of Abigail's ways of relating to Mattie, it is something they share together and laugh about.

Left: Abigail, Mattie, and Jackson. Mattie can literally put his right leg over his head these days, which isn't good for his hip, and Anna (Mattie's PT) and I are working on reminding Mattie not to do this. Because such a flexible hip extension will make it harder for him to relearn to walk. You can see in the picture that Abigail is also doing the Mattie signature pose, with the right leg covering his face.

Right: Abigail, Mattie, and Jackson! Avoiding the camera at all costs! Jackson is smiling, but I have a feeling if he hung out with Mattie longer, he too would be following suit and would be avoiding the camera.

Pretty soon thereafter, Mattie wanted to leave and go home. I am not sure how the other kids felt about this, since they really were trying their hardest to engage Mattie. But I have to respect when he has enough, and Peter and I packed up things and headed to the car. On the car trip home, there were VARIOUS moods and attitudes within the car. Mattie was edgy, which of course translates down to our moods. We all feed off of each other. As I was sitting still for this 40 minute car trip home, I kept analyzing whether this weekend was worth it? Or better yet, is this how all our days will be like into the future? Filled with tension, conflict, and attitude? I certainly hope not, but it is moments like this when I have a hard time pulling out of the funk that our situation creates. Because Mattie is so moody, I am hesitant to do many things with him by myself. On the other hand, it is priceless to see him smile with Abigail and Jackson, and certainly it was lovely to see his face light up with the fireworks, but all of this comes at a large cost to Peter and I. At this point, we have no more money in our emotional bank account, so this makes it harder each time to replace our amazing deficit. Also we can't afford a deficit, because of Mattie's daily care that is needed to sustain him. So it leaves us in a quandary.

Once we got back home, we started the unpacking process. While unpacking, Mattie was very focused on his Lego carousel. I still have parts of this 3500 piece set all over my living room! I landed up doing three loads of laundry, and thanks to JP, our neighbor, I did not have to worry about dinner. Thanks JP for bringing us dinner and welcoming us home tonight! It was greatly appreciated.

As we head into Monday, Mattie will have his clinic appointment to receive MTP-PE. I have no doubt it will be another long day! However, I am saddened to report that Dr. Kristen Synder, Mattie's oncologist, is leaving Georgetown University Hospital. She let me know about this over a month ago, but I promised her I wouldn't let others know until she told them. So this will be our last Monday appointment, we are switching clinic days to Thursdays. Though Kristen will be working at the Federal Food and Drug Administration, she will be working at Georgetown one day a week, Thursdays. So happily to keep working with Kristen, we are changing our clinic appointments to Thursdays. None the less this is another loss for us, because we have been used to having Kristen around five days a week. However, I know she is only a phone call or e-mail away.

I end today's posting with a message from my friend, Charlie. Charlie wrote, "Vicki, thank you for sharing the ride (blog) with us and I know we all hope that the sharing helps you even as it teaches life lessons to your audience. We are all riding the emotional coaster along with you. Sitting at the top of the loop doesn't take away the feeling that one had after the headlong rush downward the day before. Even with that said, I know that without the good days, the bad ones are impossible to survive. As you go along this process of moving toward health and healing, I hope the bad days become less frequent and less intense as well. I think what you have done with and for Mattie is remarkable. I am so impressed by his ability to be his own spokesperson, to explain what cancer is about in an upfront, unapologetic manner. I know this will be a strength for him as he continues to heal and to connect with other children. Shopping, like many other things, is a distraction from what is the central focus of your life right now. It is hard to let go and enjoy something like that when the reality of your existence intrudes. Although it was a more positive experience, I am sure it was difficult to sit and enjoy leisure reading when you were preparing for your doctorate; there was a feeling that taking time away from preparation was somehow wrong. Experience shows though, that the break makes us more productive, focused and better able to deal with the problems when we return to the task, so whatever you can find that allows you to temporarily escape from "cancer thoughts" is good and should be welcomed."

Happy Fourth of July

Saturday, July 4, 2009 -- Happy Fourth of July!

In honor of Independence Day, I share with you a link to the song, Proud to be American! Enjoy and hope you all had a happy and safe July Fourth.

http://www.youtube.com/watch?v=RINqibpWOzQ

Quote of the day: "When you come to a roadblock, take a detour." ~ Barbara Bush

For those of you who wrote to me today, thank you! I appreciate your feedback and encouragement after the very challenging day we had on Friday. Not that it takes away the pain of the day, but there is a great deal of peace knowing that we aren't going through this alone. That you keep on reading, responding, and truly and deeply caring about us. This alone is a special gift, that we never take for granted. The only thing worse than what we are going through is if we went through it alone and without all of you.

In usual Mattie fashion, today was a bit different from Friday. He is still fragile, but we got him out of the room today. I must admit that after yesterday, I feel more down and sad about the nature of our future. However, Ann called me this morning and wanted to go shopping with her friend, Liz, and myself. So I did join them for about two hours. Shopping is a thing of the past for me, well frankly VERY past. Mattie never liked going shopping, so I haven't really been shopping for myself in years, not like I used to. I am lucky to have my mom and dad, who usually send me clothes and things as gifts. Now shopping is virtually impossible. In a way, when I am not caring for Mattie and working and focusing intensely on him, I feel a bit lost. So shopping for me was a strange feeling. It was strange to be looking at clothes and other items. A part of me couldn't get over all the people buying things, if some of you did not let me know about the state of the economy now and then, I would be thinking we are in great shape as a Country. With Mattie's illness, also comes other issues for me. In a way there is no desire to buy new things, because where am I going to wear them to? To the hospital? Who am I going to be seeing (of course no offense to my friends at Georgetown Hospital!)? I also don't feel like myself. I have led a sedentary life for a year now, and clothes don't seem to make me feel or look happy anymore like they used to. So I was out shopping, yet interestingly enough doing something more normal doesn't make me feel more normal. In fact, if this makes sense, doing something normal only makes me see how different I am from others. While inpatient at Georgetown, hospital living became my way of life. That was my community, and being sick was what each day held, along with fighting cancer. Now, I know what needs to be done, but without Mattie's help and cooperation, I have no idea how recovery will get accomplished. So I feel as if I have been uprooted into a brand new culture, and at this point I am just trying to learn to communicate with a new language. The language of hope and healing. However, hope and healing just doesn't happen, it requires a great deal of pain, sadness, and turmoil to trudge through in order to achieve it. It is certainly worth it, but I remind you, Peter and I are not as energetic when we started this process 12 months ago.

This morning, Peter and I debated back and forth as to whether we leave the resort and go home. However, Peter was scheduled to play golf with Bob and I wanted him to have the opportunity to get outside, play golf (which is something he likes), and to forget about our situation for five hours. I hope this venture was successful. Meanwhile, when I got back from shopping, I got Mattie dressed and he went down to the pool to build a Lego. He was shy at first, but then Jackson (Liz's son; Liz is a friend of Ann's) came over to play with Mattie. They built a Sponge Bob Lego set that Ann gave Mattie today. Mattie and Jackson were quite engaged with each other, and in fact, Abigail came over several times to play too. So unlike Friday where Mattie was completely closed off, today, he allowed a few people in his life. What I found particularly interesting was the discussion the kids were having about cancer. Jackson asked Mattie what part of his body had cancer, and how he got it. Mattie answered both questions very well. He showed Jackson the scar on his leg, and explained to Jackson that he doesn't have cancer anymore. Jackson admired all the stuffed animals Mattie has attached to his wheelchair. He told Jackson that his friends gave the animals to him because he had cancer and wanted to cheer him up. I really hadn't heard Mattie use the term, Cancer, so freely. But he was talking about it very knowledgeably, you would have been proud of him! I removed myself from this conversation between Jackson and Mattie, because I wanted to see what was going to transpire. At one point Jackson's ear was bothering him, and Abigail came over to see it. They concluded that perhaps he had cancer in his ear. Ann resolved that issue, but it spoke volumes to me. When another seven year old child sees Mattie who is sick and disabled, I can see the likely deduction is this could happen to me! Below are some pictures we took at the pool!

Left: Mattie and Jackson discussing how to put the Lego set together.

Right: Mattie, Abigail, and Jackson, working on a Sponge Bob Lego set. It was amazing to see how many other boys around the pool wanted to join in and build. Apparently Legos has a real draw!

Left: Jackson, Abigail, and Mattie

Right: Jackson and Mattie

After several hours by the pool, Mattie wanted to go back to the room, and Ann asked Mattie if he wanted Abigail to come up with him. So Abigail joined us for a while, and she and Mattie watched Scooby Doo videos together. They were both very peaceful after being outside in the sun and heat. Mattie and Abigail were glued to Scooby Doo, and even made up their own rendition of the Scooby Doo theme song. In true seven year old fashion and humor, Scooby Doo, became Scooby poo, which turned into Scooby poop. They were squealing with laughter and I videotaped this performance, which they were both very proud of.

Mattie decided to join Ann and Liz's family at dinner tonight. We went out and Mattie was engaged with Jackson (Liz's son) and Abigail. Jackson even gave Mattie a sticker tonight which says, "Mattie King for Two days." They colored together, ate, and played with Legos. So overall, Mattie had a great day. In fact a night and day difference from Friday. Here is the problem with this though, certainly I am thrilled he had a great day, but I feel like I am riding an emotional rollercoaster. I never know which emotion I am going to get on any given day. This level of uncertainty and volatility is complex and wearing. Mattie may have moved on from Friday, but I am still stuck there. It is much harder to recover from set backs now because we are tired. As we head into Sunday, we will be packing up and heading home. Two days goes by so quickly, especially when the first day is so challenging.

I would like to share three messages with you tonight. The first one is from my friend, Charlie. Charlie wrote, "So much sadness and disappointment in the blog for Friday. I know everyone was really hoping this would be a good break for all of you and hopefully, Saturday will be a better day. Your feelings of jealousy at others' enjoyment is totally normal; it is the way your family should be living but cannot. Mattie has been through so much this year and he knows how ill he has been and what he has had to go through to come this far. A lot of his behaviors, which I would call "survival" behaviors (stubbornness, putting oneself first, insistence on routine) are needed for the illness but are counter productive when trying to move to healing. It is going to take him some time to relearn his social skills and how to get along with others. Of course this is not helped by people who don't understand what it is like to have a ill child; their ignorance and rudeness puts you and Mattie on edge making the whole process more difficult. I hope one day in the not too distant future, you can look back on this and say with positive feelings, "we got through it and look how well Mattie is doing now." In the meantime, you may have to treat Mattie like a much younger child who requires positive reinforcement for every social step forward he can make. He has wonderful role models in you and Peter and those you are close to, and if anyone can be successful in this endeavor, it is you."

The second e-mail if from a friend and fellow SSSAS mom. Tamra wrote, "Well, dear friends, fireworks are literally and figuratively indescribable, mysterious, frightening, beautiful, humbling...all at the same time. I loved the preview photos of what will come on this evening of the celebration of our nation's independence...But your own personal fireworks yesterday... Vicki, you described as hell..is the frightening part of personal fireworks...they can be so explosive -- they can linger or be a burst...my heart breaks for the hot and awful and explosiveness of what you go through. You know, all of us wish we could wash away the bad stuff but we can't.. we can just hold you closer in our hearts and minds and prayers that there is a little sweetness and beauty and progress in each day for the 3 of you. Marriage brings with it a ton of ups and downs in everyday life..compound that with the fragility of your sweet Mattie's battle it adds so much more work to the moving forward part of the growth of a family. Easy for me to say as an outsider looking in, but I am humbled by the raw emotions that you bear..and share with all of us. For our little team Bentsen, it reminds us to be grateful and loving and joyful and celebratory with our lives as individuals, as parents, as children, as friends. And, we hope that in your darkest most frustrating times that you remember that we love you 24/7. Here's to you, dear friends."

The third message is from our friend and former neighbor, Goli. Goli wrote, "My dear Vicki, I don't contact you enough, but I am always at ahhhhh on how you and Peter do it. As we have discussed before, my faith in any supreme being has never been very strong, but last year was even worse. Mattie's illness, and in general all the injustice, has shaken my already shaky belief in any supreme being to the core. But, as an individual, every one wants to believe that there is something, something that brings about this unbelievable order. Everyone needs to sometime just cling on something, something much bigger than what we can imagine. I have been thinking about why this had to happen to your family for many months, and have not been able to find any reason. In addition, from my roof garden I watch people on the street. One particular one has touched me a lot. There is a 95 year old, frail, lonely, lady who wears the same thin winter coat in all seasons. Rain or shine, every day, she walks from her apartment which is about 3 blocks to the grocery store. It takes her about 3 hours to do this. And each time seeing her makes me again think of God's reasoning and choices. During my trip to Iran, I discussed your situation with groups of people who believe in the supreme being. Some who are more conservative than others. I asked what is the reason this had to happen? Why is this the wish of Allah? And what good comes out of this? Wow, how cruel of a wish this has been for all three of you. Today's blog, was almost like lightening. Today, you said "perhaps I am destined not to be happy," and it simply dawned on me. There is no reason for you, Peter, and Mattie to go through this, no reason at all, unless you are destined to go through this nightmarish first hand experience so the three of you can impact and change lives of millions of people. Today I thought maybe be there is a God, and maybe there is a reason. Mattie is very correct calling the other kids "kids." As it is said in Farsi, Mattie has gone on a hundred year trip in one year. The rehabilitation will be long, hard, and will have its toll on all of you. But I am sure you will see him again change to the Mattie we knew, just much more experienced."

Friday, July 3, 2009

Friday, July 3, 2009

Quote of the day: "Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work; you don't give up." ~ Anne Lamott

If you are looking for an upbeat blog tonight, then I am sorry to disappoint you. Today was a hard day from the beginning to the end (and for us the night is still young!). Mattie woke up edgy today, and though we thought he was going to be excited to go away, since he was reporting excitement all week long, we instead dealt with one tantrum after the other, which made getting out of the house and into the car almost impossible. Mattie was very fixated on working on a LEGO carousel set that I got him earlier this week. He has certainly made headway on it, but it is a 3500 piece set, and takes time. A part of me feels as if Mattie did not want to leave today unless the set was completed. Despite level setting his expectations, it did not help. I freely admit I was getting very frustrated with Mattie's behavior. He was so focused on the LEGO, that he wouldn't feed himself breakfast and lunch, and forget about getting dressed. He wanted me to hand feed him, and sometimes I do help him, but he is more than capable to feed himself, and the simple fact was that Peter and I had to pack up things for the trip. At one point, Peter went down to load things into the car, I had made lunch for all of us, and I expected Mattie to stop and eat, so that we could then get him ready to leave for our short trip. Mattie refused to listen or comply. It was at that point, that I absolutely lost it. Though he has had a hard year, I really do not think this gives him the right to have such selfish behavior and I told him as much. We had many words with each other and then he lashed out by saying I was a bad mom and he hated me. All natural, I know, but not what I needed to hear. Mattie wouldn't calm down, and had a massive tantrum, all over the simple fact that I wanted him to feed himself lunch. It took Peter and I over an hour to stabilize this situation. By the time this was done, I felt as if I made the wrong decision to go away this weekend. I could sense Mattie's attitude, and the stress level felt by Peter and I.

None the less, we continued along with our plans. We want to thank the May family for their wonderful traveling goodie bags filled with all sorts of toys and treats for Mattie, and wonderful goodies and wine for Peter and I. Thank you Liza for thinking of us and giving us this bon voyage treat. Our road trip was painless, mainly because we are only 40 miles away from Washington, DC. When we arrived at the resort, Mattie seemed focused on finding Abigail. So I checked into the room, and Peter took Mattie to the pool where Abigail was. Though Ann and her family gave Mattie a warm greeting, Mattie was intimidated by the pool, the water, and most likely seeing all the kids and activities he couldn't do. Minutes later Peter came back to the room, and I was stunned to see them. Mattie spent the rest of the afternoon in our room, doing a LEGO project with Peter. I wasn't sure what to be upset about first. I tried to reason with Mattie about the fact that this was a vacation, and perhaps he wanted to take a walk, or sit in the hotel and do a LEGO. Anything but be couped up inside the room (something we can do at home)! But there wasn't any reasoning with Mattie.

While Peter and Mattie were playing together, I went to the pool and sat with Ann, Bob, and Ann's friend, Liz. This was the nicest part of my day! I could see the kids were all having a good time together, which of course was a wonderful sight to see. However, I have so many mixed emotions. I feel terrible admitting this, but I am SO jealous of people with healthy children. I see them having fun with their children, and this is not something I can do with Mattie. Or let's put it this way, the typical activities a seven year old boy should be able to do, Mattie can't. I will never get this time back in his life, and instead, the time we have together is filled with conflict and angst. Certainly I think a more normal life is obtainable, or I have hopes it is obtainable, otherwise I would give up now, but with that said, I can't say that there are times I just want to throw in the towel. I live this life day in and day out. It is socially isolating and depressing. What is crystal clear to me though is Mattie's personality has been deeply affected by cancer. It has changed how he relates to people and the world around him, so though technically Mattie may be cancer free physically, mentally the disease has taken hold of him. So now I am fighting to get my son back from the emotional turmoil he has lived through for the past 12 months. I can assure you it is hard for us to keep a stiff upper lip, when Peter and I have survived this turmoil too.

What truly bothered me today, as if Mattie's behavior wasn't upsetting enough, Peter and I landed up snapping at each other. I think we are both at our breaking points and can tolerate different things about Mattie's illness. Which is fortunate, because when one can't handle one aspect, the other steps in. But despite setting our expectations for this weekend on the low end of the spectrum, Mattie has a way of rocking our world and bringing us to a new all time low. His moodiness, his demands, and his irrationality about things are overwhelming. Today I wanted to just scream from the roof top, but then I figured who honesty is going to get what I am screaming about?! Well I know all of you would, but you have lived this with me for 12 months.

As the evening rolled around, Mattie did go down to the lobby of the resort, and got to see the fireworks that the property displayed. Again, Mattie was edgy and really did not want to interact with the other children. In fact, Mattie refers to the other children as "the kids." As if he is not a kid. Perhaps on some level he doesn't think he is one. He certainly has seen and experienced things this year that most children have no knowledge of. His terminology of "the kids" caught my attention. Despite the day, Mattie did enjoy the fireworks. He smiled and was excited. But just as quickly as this excitement came, it left at the same quick pace. In fact, he got me so upset, that when we were trying to walk Mattie back to the room, I almost fell. If Peter did not catch me, I most definitely would have hurt myself. So I was shaken up, and when we got back to the room, we all had to reset.

Ann and her family have really tried to include us, but the sad part is, because of Mattie's feelings and behavior we have to isolate ourselves from others at this point. I am fortunate that Ann understands this and doesn't take this personally. Which helps us tremendously. I am not sure I am expressing myself adequately, but step into our world and try to imagine that one day you wake up and your child is so emotionally different from the person you raised. That your child can't seem to find happiness, and he is in some ways emotionally and mentally older than his peers. Older because he has been surrounded by adults all year, dealing with life and death issues. Life and death issues that I believe many adults in our society shy away from! I wonder how would this make you feel? Yes this is an academic exercise of imagery for you, but this is our reality. I am also flooded with stares at Mattie. Mostly I can deal with this, but on a day like today where I know WE ARE DIFFERENT, staring only further grabs a hold of my heart.

I realize that tomorrow is another day, and with another day, I HOPE that things will be different. It takes a certain level of strength, determination, and love to greet each day as a new day, because Peter and I live through some of the worst things life has to offer. As I said to Ann tonight, perhaps I am destined not to be happy. I also don't feel like I can be a part of the healthy world. This is world that no longer understands me or Mattie (I qualify this statement certainly, because there are all of you who get it, but I don't travel around with all of you in a bubble). Now mind you, you may say, wow Vicki sounds depressed. But I can tell you I am not clinically depressed, I am the product of living in hell on earth, and I do not see how on earth I couldn't be impacted by what is happening to Mattie.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I read the Washington Post article and I am sending the link out to everyone I know to ask them to request support of their representatives for legislation to help solve the tragedy of childhood cancer. All of us appreciate what wonderful spokespersons you and Peter are on this issue and we all wish you did not have such a personal stake in the outcome. It's clear that getting Mattie back on a schedule is going to be a major undertaking. In the meantime you may have to shift somewhat to his schedule and try to get some extra sleep while he is sleeping in. It seems that while Mattie is not enthusiastic about going to physical therapy, once he gets there, they are able to engage him and get him to participate fully. The pictures of Mattie both building legos and doing his therapy are great; as long as he is moving and has things he wants to do (however inconvenient) he is on the road to recovery. I wish for your sake (and his) that this road was a little smoother and more direct than I suspect it will be; however, keep the faith as things are headed in a positive direction now and the ultimate goal is Mattie up and about, enjoying his life, his family and friends."

Thursday, July 2, 2009

Thursday, July 2, 2009

Mattie Quote of the day: Peter asked Mattie at dinner about his HOPE fountain that he designed in clinic yesterday. Peter wanted to know what inspired him to ask me how to spell the word, HOPE. Here was Mattie's response.....
"I just wanted to know how to spell the word for happiness, so I asked how to spell HOPE!"

Quote of the day: "Hope is putting faith to work when doubting would be easier." ~ Author Unknown

I started my day this morning with an e-mail from my dear friend, Lorraine. Lorraine let me know that Mattie's story was in the Washington Post today. I was shocked until I e-mailed Peter and he told me that he had been working with a reporter covering CureSearch's event entitled, "Reach the Day." The event was held on June 22-23, 2009, in Washington, DC. CureSearch's goal is to unite and mobilize as many voices as possible in order to raise awareness and ensure childhood cancer is a national public policy priority. Peter posted a link to the article on the upper left hand side of the blog for you to read. Mattie is mentioned on page two of the article.

Mattie couldn't fall asleep last night. You are probably getting tired of reading that line with most of my postings. I can assure you that I am just as tired living this nightime routine! Mattie complained of dizziness last night, and he felt that the room was spinning. I made the assumption that it was a side effect of all the pain medications he is on. But I have been monitoring him since he reported this. However, the issue was waking Mattie up this morning. I tried everything, but he just was so tired and lethargic. Each time I attempted to wake him up, he told me that he really needed to rest. So though I am trying to get him on some sort of NORMAL (whatever that is) day/night schedule, I felt compelled by my observation of him to let him sleep. Boy did he sleep! I literally dragged him out of bed at 2pm. It is a shame that I wasn't in bed resting throughout this time.

Mattie had a 3pm physical therapy appointment at the hospital today, so I felt like I was running a marathon to get Mattie up, cleaned, dressed, and fed. Not to mention transferred into the car, lifting the heavy wheelchair, and finding a parking space at the hospital. The parking alone could take 30 minutes! But we got there on time, and Anna met us with her colleague, Cathy. On the days that Anna can't work with Mattie, Cathy will take over. So Anna is trying to get Cathy up to speed on Mattie and his personality. I would say Mattie had another great PT session today. I got to see "Steve," Mattie's right leg in motion. Anna designed exercises or games to get Mattie to use only his right leg and foot today. Before Mattie would entertain Anna's suggestions, he first wanted to pick an activity to do, so he swung on a platform swing for a few minutes, and I even saw him putting pressure on his right foot, which was great to see. However, when I look at Mattie's legs, they appear to be so frail, that I wonder how they even hold up his body. His emaciated body, his lack of hair, his coloring (and deep pigmentation on his fingers and toes as a side effect of chemo, NO it is not dirt!), and his pale complexion are constant reminders to me of the horrific year we experienced. Though I am talking about hope, healing, strength, and wellness, it will take me a while to fully embrace these concepts. I too have a lot of healing to do!

Left: Before we left for clinic today, Mattie insisted that I take a picture of his LEGO monorail. He wanted all of you to see his latest project!

Right: Mattie is racing against Cathy, who is behind him on a scooter. Mattie designed an obstacle course, and notice he is using ONLY his right foot to move. We told him he was using "Steve" power today. Mattie wasn't even using his arms in any way, because we reminded him that he is still healing from the sternotomy and can't put any pressure on his arms until his chest heals.

Right: Mattie was working very hard today! In fact, after all the scooter races and pushing himself on a swing using his right foot, he was exhausted. After about 45 intense minutes, he was ready to go home! Anna and I were thrilled with his progress today, and I have decided to take him to the hospital Monday through Thursday each week for physical therapy. I am hoping this daily routine will help encourage and strengthen Mattie's body to heal and get back into an active lifestyle.

As we were leaving the hospital today, Mattie had to go to the bathroom. However, Mattie will not use a regular bathroom, in fact the sight of a toilet frightens him. I certainly can travel around with a urinal, but not a commode. So my stress level was rising because he had to go to the bathroom, but only wanted to go at home. So needless to say, I found a way to transfer him quickly and safely back to the car, and got him home in time. It felt like to beat the clock. I will have to give this some thought about how to handle this, I even suggested to him a portable potty, like we used to use when training him as a toddler. But that suggestion was simply insulting and ridiculous to Mattie. So I am back to the drawing board on this issue.

When Mattie and I got home, he wanted to build some more with LEGOs. What a surprise!
However, he pulled out a set with 3500 pieces. Those of you familiar with LEGOs know this is quite a project and undertaking. When Peter got home tonight, we took Mattie out to dinner. Dan was originally going to cover Mattie today, but he had a meeting this afternoon that he had to attend, so I figured this gave us a good opportunity for all three of us to go out to dinner. Mattie agreed to go to dinner, however, when it was time to go, he was upset that he had to stop building with his LEGOs. Despite bringing LEGOs to dinner for him to work on, he made eating and going out a very difficult experience. Every two minutes he kept asking me if I was done, because he wanted to go home. Needless to say this wasn't a pleasant, calm, or enjoyable dinner. But I am so used to these moments this year, that they are more commonplace than unusual. For some people this may not be such a loss (having a peaceful dinner), but food and meals have always been important to me. In fact, prior to Mattie being sick, regardless of what I was doing, I was always cooking. We rarely ate out, but now our life is quite the opposite. I don't cook any more. I don't have the desire, patience, interest, or even energy. Fortunately thanks to all of you, and Ann coordinating this, I don't have to worry about meals. That is truly appreciated. Though I must admit Mattie was the kind of kid that never enjoyed eating, sitting still, or being at a meal table. This was a constant source of frustration for me, since so much can occur around a family table. Not just eating, but sharing, learning about each other, and connecting. So this has been an area of my life that I have been working on for years, and then this year when cancer stuck, this no longer was a priority. I, unlike Mattie, as a child always loved sitting at a table. Listening to people talking, watching and observing their every moves, and getting to know what foods pleased them. I guess a part of me is saddened that Mattie and I can't share this love together.

While at the restaurant tonight, Mattie was building with LEGOs. He designed a building with an American Flag on top of it. He said he was getting ready for the Fourth of July. We discussed the fourth of July in the car ride home today. He wanted to know what the big deal was, and why would there be fireworks on the 4th. Basically why was it even a holiday? So we discussed the importance of independence and commitment to certain ideas and beliefs, which to me are all the great principles that formed our Country. I also said that in essence this is our Country's birthday, and you can't have a birthday without celebrating it. That of course Mattie got immediately. So the questions this afternoon, seemed to lead to incorporating the theme into his LEGO design. At dinner, Mattie built, I shovelled food into his mouth, and Peter kept getting him to drink a whole glass of milk. I don't know about Peter, but after the meal, I was exhausted. Between building and balancing his desire to go home, I had had it.

When we got home, Peter and Mattie decided to go to Target and pick up some things for our trip tomorrow. It was lovely to have a quiet house for an hour! While they were gone, I had to hop onto a professional conference call. It hit me today, being July 2, I am NO longer the president of a national association. I am not sure why that just dawned on me, since my term ended on July 1. Somehow this hit me hard today, because all I could reflect upon was a lost opportunity, a failure on my behalf because of my lack of leadership and focus, and then I got a hold of myself and realized that God gave me a bigger task. A bigger organization to run and a cause to devote myself to, and that of course is the health and welfare of Mattie. I never had my priorities screwed up this year, but I can't say this loss isn't bittersweet. Somehow serving on the conference call tonight, only provided me with greater pain, or as a further reminder of my year. I want to thank several of my association members today who actually wrote to me and said that I did a great job as president, and that they admire me for what I have done with Mattie, and my willingness to share my story. I want to remind my readers that I typically am a private person, so this year has been an absolute role reversal for me. However, in sharing our story, I feel like it brings a taboo subject to light, and if nothing else is accomplished, I hope it is clear that cancer is a family disease.

As we head into Friday, my goal is to pull Mattie's medical supplies and everything he will possibly need for the next two days together so that we can go on our weekend get away. I know Mattie is excited, and I just hope that I can sustain this excitement.

I end tonight with a message from my friend, Charlie. Charlie wrote, "I know you were disappointed to find out that the attempt to go to alternate nights for IV hydration did not work out. Since the problem seems to be Mattie's current inability or unwillingness to eat, we can hope that as he feels better he will start eating more and make the continuing hydration unnecessary. I am really happy to read that Mattie has started to embrace getting well. It is so clear that he takes his focus and beliefs from you and Peter. This is great because it means that he trusts you and what you say and how you act. It also confirms that what you have done all along which is to tell Mattie the truth in a way that he can understand it was absolutely the right thing to do. It is wonderful to hear that Mattie is reaching out to other children now, initiating conversations and play. It tells you he is ready for more activities even if he tells you he is not. I hope Mattie continues on the path to independence and wellness and that you find the strength to keep him moving forward."

Wednesday, July 1, 2009

Wednesday, July 1, 2009

Quote of the day (Thank you Kristen - Mattie's oncologist!): "Hope... is a strange invention. A patent of the heart in unremitting action, yet never wearing out." ~ Emily Dickinson

Before I begin tonight's posting, I wanted to comment on two things. First, last night we received a beautiful posting in the commentary section of the blog. The person who left a comment, doesn't know us personally but started reading our blog after our Channel 9 newscast about Mattie. This person's message really touched my heart, and I am in awe of those who do not personally know us, and yet are interested and committed to Mattie's story. For finding the time and for opening your hearts to us, we are very grateful. In challenging times, we reflect on all of you who stand behind us. The second thing I wanted to comment on is my mom. Many of you wrote to me today and asked whether my mom is a mental health professional like myself. The answer is no, she is just an intelligent and intuitive woman. In fact, my mom was a devoted mathematics teacher for 20 years in a New York City public school, was a college advisor, and then eventually became a full time caregiver to her mom, who suffered a massive stroke which left her paralyzed and with a change in personality. My mom cared for my grandmother within our home. I am sure she will be happy to hear how much you enjoyed her writing!

Mattie experienced his first night without IV hydration on Tuesday. That should have been a great night, but it wasn't. Mattie couldn't fall asleep until 1:30am, he needed oral pain medication, and then was tossing and turning all night long. At 6am, he needed more pain medication, and then by 9am he was up and agitated. Mattie complained of pain in his right hip and left wrist, and in addition, he is experiencing nausea. Most likely the nausea is from the narcotics he is on to manage his pain. I find pain killers to be just that, killers. The side effects from them are almost as bad as the pain itself. Mattie is not eating well at all. In fact when Peter and I looked at Mattie's right leg tonight, it looked more like a chicken leg, rather than the leg of a seven year old boy. You can see the amazing atrophy between the right and left leg. In any case, I think Mattie's oncologist is concerned about Mattie's weight, especially since he isn't gaining any weight. Mostly because he isn't eating. In addition, because he isn't eating, this is impacting his electrolyte balance. Mattie had a blood draw today, and Dr. Synder (Mattie's oncologist) told me that after just one night without IV hydration Mattie's electrolytes were imbalanced. Mainly his sodium and chloride levels were quite low. So needless to say, until Mattie starts eating, he will remain on IV hydration each night.

Mattie headed to clinic today at 1pm. Trying to leave the house with Mattie is always a challenge. It is a challenge because he can't dress himself, clean himself, or go to the bathroom without assistance. So in essence his level of dependence is high, and yet I want to give him some freedom to try to meet his own needs. It is a fine line to balance, but one I struggle with each day. Mattie had a good time with Jenny, as he designed first a ceiling tile, and then moved onto a fountain scene. This scene was very tranquil, and Linda, Anna, Jenny, and myself all commented that we wanted to transport ourselves into Mattie's creation. Jenny told me today that she noticed a difference in Mattie's self talk. First of which is he initiated dialog with other children at the art table. A major first. Normally Mattie keeps to himself. But today, he was asking the other children what they wanted to do, and he even asked one little boy what he wanted to be when he grew up. Jenny said that the message of wellness and healing is getting through to Mattie. In fact, Mattie told Jenny that he is going away for the weekend with Ann. He told her that he couldn't do this if he were sick, so I was thrilled that our messages are getting through.

While creating his fountain today, he asked me how to spell the word HOPE. I told him to look at my necklace. This seemed to come out of the blue. He looked at my necklace, and then painted the word right next to his fountain. So this is now referred to as the HOPE fountain. This to me is the perfect example of a message that has been internalized and now acted upon. Funny how empowering the word HOPE is, it is so powerful that it has defined our entire year.

Left: Mattie and Anna, as he designs his fountain. Meanwhile Anna is on the floor stretching Mattie's right leg.

Right: A close up on the HOPE fountain.

While Mattie was in clinic, Anna (Mattie's physical therapist) arrived for a session. Anna's intention was to bring Mattie to the PT clinic, but Mattie did not want to go at first. So Anna switched gears, had Linda come to the Lombardi Clinic for moral support, and the PT session started at the art table. Anna worked on stretching Mattie's right leg, while he was talking and painting. He at first did not want to cooperate, but I won't tolerate this attitude anymore. We even talked about this in the car on the way to the hospital today. Mattie said he doesn't like physical therapy. I said that I could understand that, but that in all reality he should love physical therapy and Anna. Why, because they will get him walking and running again. But I admitted this is going to be hard work, but he is capable of doing the hard work now because he is no longer sick. The session then migrated to the PT clinic, and I let them work a bit without my presence. Instead I spoke to Mattie's doctor about his electrolyte imbalance. When I arrived at the PT clinic, I was amazed at what I saw. Anna and Linda got Mattie to stand, balance, and they were all doing shaving cream races on a long mirror. Mattie was racing with his hands and even his feet. Linda and I snapped some pictures of this productive session. The irony is Mattie was under the impression that he will never be able to lift up either of his arms above his head. This is definitely the case for the right arm, because nerve and muscle had to be cut out due to the nature of the massive tumor that was there. However, that isn't the case with the left arm. Mattie told us today that Dr. Bob said he would never be able it lift his arms, and I clarified what Bob actually said. I said that he has to work at stretching his muscles, but he will be able to have full mobility in his left arm. With that, I began to see the left arm trying to rise up. The power of positive thinking!

Left: Anna, Mattie, and Linda having shaving cream races.

Right: Mattie insisted that I had to participate too. So despite truly disliking this feeling on my hands, I did it. In fact, you may notice that Mattie's hand is pushing my hand up the mirror race track. With Mattie's help, I won the race.

Left: Mattie having a foot race! In fact, Mattie even used his hands to draw cockroaches in the shaving cream. Got to love him!

Right: When Mattie arrived home, our neighbor, Kathleen, left him a big bouquet of flowers. He was very touched by this!

We want to thank Beth Engiles for a lovely dinner tonight. I loved your asparagus and Mattie thought the gummy wormed topped cupcakes were special! As we head into the night, Peter and I are both wiped out, but at 10pm, the night is young for us. It is hard to believe we are in July, the same month last year that Mattie was diagnosed! As we head into Thursday, Mattie heads back to physical therapy for a 3pm appointment and then Dan, the Georgetown University student helping me this summer, is coming by to spend some time with Mattie. My goal is to go out to dinner with Peter tomorrow night, before I have to jump on a professional conference call. Where I find the mental stamina to focus on anything other than Mattie is beyond me, which is why I think Peter is remarkable.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It seems Tuesday was a full day emotionally, socially, mentally and physically. I am glad you trusted Mattie and gave him the opportunity to connect to a friend on his own. It is very hard to step away when you are used to being the main support but it is as Monday's quote said, raising a child is like teaching someone to ride a bicycle- close enough to grab the seat should he be falling but brave enough to watch him wobble as he tries to find his own center. It is a hard balance to find but I know if any parent can do it, you can. I think what Dr Snyder said is going to be critical now; you have to help Mattie find his way to healing and recovery and away from cancer and illness. I was very moved by what the blogger who saw Mattie on TV said, that you and Peter are Mattie's strength and you lift him over all obstacles and get him through the procedures. You will get him though physical therapy and help him to regain his strength but first you have to reposition your own "compass" on the new goal. This is not an easy thing to do but if/when you start looking at the wrong heading remember Mattie is following your lead and he will also lose the motivation to keep going. So now start thinking about strength, healing and wellness and let that be your guide."

Tuesday, June 30, 2009

Tuesday, June 30, 2009

Quote of the day: "The hardest part of raising children is teaching them to ride bicycles. A shaky child on a bicycle for the first time needs both support and freedom. The realization that this is what the child will always need can hit hard." ~ Sloan Wilson

Mattie had trouble going to sleep on Monday night. While I was trying to manage Mattie, I was contending with a terrible back and chest pains. I couldn't sit still, and I could tell Mattie felt bad for me, and started massaging my back with his left foot. I am sure we looked like a sight! Eventually the pains went away, and after reading several books, including, Walter the Farting Dog (don't ask, but Sally the Storylady from the hospital gave this book to Mattie, because Sally actually knows what is up Mattie's alley!), watching a video, and finally massaging his head, Mattie fell asleep after 1am. By that point, I had not much more to give.

When Sally the Storylady gave Mattie the book, she wrote a lovely message on the inside of the book cover. Sally is moving to New York, but she wanted Mattie to know that she will always remember him and that he is in her heart. Sally and Mattie did several performances in the hospital together, and she says I need to check out a You Tube link from her company that will be aired in the Fall, because it has a scene Mattie will recall from the hospital. Mattie certainly got around while at the hospital, and slowly his personality got to everyone who interacted with him. For Mattie to love you, you have to really work for it and earn it. But once you are in, you are in, and in a way it feels like you have achieved a great feat.

Mattie had a hard time waking up today, but he knew he was going to meet a new friend, Marisa. Marisa is the daughter of Denise, one of my colleagues and friends from the George Washington University. Denise and Marisa have been very supportive of Mattie throughout this year, and I am so happy Marisa wants to help me on Tuesdays each week. At first I was going to stay home with Marisa since she never played with Mattie before. However, as the morning was going on, I decided to meet up with Peter for lunch close to home. We really needed a chance to talk about a lot of things, and thanks to Marisa this was possible! Marisa and Mattie got along well, and I could tell he introduced her to his favorite thing, LEGOS! I also think for Mattie to connect with others, I sometimes need to factor myself out of the equation.

I met Peter at a local restaurant for lunch. We had a lot to catch up on, and we discussed the possibility of going away for the July 4th weekend with Ann's family. I really appreciate all of you who e-mailed me today and supported our need to get away. This meant a lot to me, because I know you can see that our level of work won't be lighter while we are away, but at least we will be doing our daily routine in a new setting, which hopefully can be a good change of pace. I also e-mailed Dr. Synder, Mattie's oncologist, and told her about my intentions of going away, and she joked with me and said she was on call this weekend, and would even be willing to make a house call to a spa or poolside. That got me to laugh! I think Dr. Synder got me to see yesterday that I need a new strategy and mind set with Mattie. The strategy is now of healing and recovery and NOT illness or Cancer. I have been entrenched in illness for 11 months now, that breaking free of this is hard, mainly because I know osteosarcoma is like a ticking time bomb, that can explode again at any point. I guess I have to compartmentalize this fear, and as parents we have to hold onto the fears and problems for our children, without letting these issues affect, pervade, and take over their lives. I wouldn't have even thought this strategy would be effective, but when I was able to talk Mattie out of feeling sick yesterday in clinic and leaving without receiving Demerol, this caught my attention. My role is NOW to create normalcy again, to motivate Mattie to allow his body to heal, and to empower him to see that as he heals, he will regain the strength he needs to use his body and live an active life. At the moment it seems like a tall order, but even today I reminded Mattie that he is cancer free and that starting this week we will be doing physical therapy with Anna. But this will be physical therapy like no other. Things are different now! We are NOT doing therapy to maintain (like we have for the past 8 months), we are doing therapy TO HEAL,TO WALK, and to help free the real Mattie that has been trapped by cancer for 11 months! Mattie listened, and did not respond, but I have no doubt things are being processed! Interestingly enough I dreamt last night (and I can assure you I rarely remember my dreams now) that Mattie was walking, and his smiling face was so vivid.

While Peter and I were having dessert, Peter looked out the window and saw our dear friend, Junko, walking by. Junko works nearby to the restaurant, and Peter flagged her down and she came in to sit with us. We had a nice time chatting, and the irony is I told Junko that I had been e-mailing her husband, Tad, back and forth this morning. Tad is on a business trip to Korea, but was thinking of Mattie. In fact, Tad was wearing the Mattie wristband in his business meetings in hopes that his colleagues would ask about it. In addition to a lovely chat with Junko, she gave me a neck and shoulder massage within the restaurant. I have no doubt people were jealous. Not many people can get away with massaging me, because well I am a private person (of course that was true pre-blog, things are a bit different now), but Junko is a special lady with magic hands (as I often tell her!). Today had me pausing. Prior to Mattie's illness, I would NEVER have thought to take a break and have a midweek lunch with Peter and now I can see all the things I missed out on for years. Not stopping to enjoy others around us is a mistake. What a lesson to learn. I certainly appreciated people and always devoted my life to assisting and listening to others, but somehow things just feel differently now. Thanks Junko for today!

After lunch, Marisa called me to let me know that Mattie missed me. They made it about two hours together, which was a great start. Somehow even two hours away helped balance my mood. After we said good-bye to Marisa, Mattie and I headed to the mall, to the Lego Store. My GOODNESS, Legos are expensive. I guess I am just clueless since Peter usually buys them, but I couldn't get over it. Needless to say, Mattie had a great time searching through the store, and he came away with some wonderful Legos to work on this weekend. When we got home this evening, Mattie started working on assembling the Lego Monorail. He is actually doing a great job independently. I am now giving him kudos and positive feedback for any independent activity he accomplishes. I snapped a picture of his work in progress! As I am typing this, Peter is building with Mattie, and they are tuning in periodically to the Red Sox game.

I would like to thank the Keefe Family for a wonderful picnic dinner. It was delicious and we loved your mom's devil egg recipe. Even Mattie ate it! Thank Tim for the wonderful homemade cookies, and Mattie loves the Scooby Doo sprinkles! I also want to thank the Morris family for the dinner they provided us on Sunday. Liz, I am sorry I got my wires crossed and thought Mary D. was delivering dinner on that night. Mattie loves the book and American flags you gave him too!

As we head into Wednesday, Mattie heads back to clinic for a blood check. This is the first night since surgery that I will not be giving Mattie IV hydration. We will check how this impacts his electrolytes tomorrow. If all is well, then we will attempt to give Mattie fluids every other night, until God willing he won't need fluids anymore at night! This will be an amazing feat! In addition, Mattie's outpatient physical therapy will begin tomorrow afternoon. Please continue to send us your positive thoughts, energy, and prayers as we try to heal and regain strength from this 11 month battle, that still isn't over.

I end tonight's posting with two messages I received today. The first message is from my friend, Charlie. Charlie wrote, "As a friend of mine used to say, "and the hits just keep coming." I know Mattie's attitude is hard to deal with but it is going to take time and patience to change it. I think if anyone suffers from depression (versus sleep deprivation) it is Mattie. That said, no one suffering from depression ever got better hiding out from the world. Medication, therapy and being active work wonders and create the endomorphins and other brain chemicals that help balance the tendency to dark thoughts. I think you need to help Mattie normalize his life as much as you can and show him that joy is still possible. It appears that he is often unwilling at first to see friends but once there can be convinced to play and participate. In Judaism we say what is most important is the doing because doing eventually creates belief. While that reference is to religious/social/charity obligations, I think it is true of life in general. Even when you don't want to, you get up and go and do and often you feel better for it. Don't let Mattie hide; be judicious in what and who you pick for social outings but don't let him isolate himself or you. In the long run that is harmful to you all."


The second message is from my mom. My mom wrote, "Mattie is having a very hard time accepting himself as he now is and who could blame him. People are always conscious of how others perceive them regardless of gender or age. Mattie is a little boy and unprepared for the effect his illness has on others and undoubtedly, he has perceived that he no longer "fits in" with his peers. Such self analysis is hard to grapple with at any age but at his young and tender age he has no built in defenses available to mitigate his unhappiness with his state of things. If differences are blatantly obvious like in Mattie's case, he is often the object of stares and gapes of strangers whenever out in public. Mattie is no dope and senses the negative attention his bald head and wheel chair attract. It is almost too much for a seven year old to bear. His functionality is also on the line especially in the presence of other children his own age, it is no wonder he becomes depressed. He can't do what they do! He can't walk, jump, or run. Those are the basics necessary for participation in the most rudimentary childhood games and he can't do any of it. He is frustrated, tired, sick at heart and feels isolated from a childhood he once knew and wants to escape from being in the presence of his peers because he is most aware of his disabilities when he sees his old friends and remembers how it used to be. It is heartbreaking but understandable. When he is made to realize that he is now in recovery mode and can feel his physical strength return gradually with every passing day, he will be motivated to use his energies to do the things he did before. With the stamina of youth he will be able to break out of the physical and mental limits that his illness imposed on him. Optimism will replace negative thinking and he will push himself to move forward as he witnesses his own progress and the return of his independence to control his body and environment without the help of others. That will not happen overnight. IT WILL TAKE TIME!! He is in his current state as the result of 3 surgeries and chemo treatments that lasted 11 months. But, if he takes even the smallest steps, whether alone or in pt, it will be a beginning. Mobility will probably happen gradually at home when he begins to move from chair to chair or bed to chair. Whatever his motivation might be, whether it is a desire to get a toy or go outside to see the garden, he will be stimulated and secure enough to take those first steps on familiar turf, especially when nobody is looking. We must trust his instincts and believe that once he "empowers" himself to move forward, he will and there will be no looking back!"

Monday, June 29, 2009

Monday, June 29, 2009

Quote of the day: "Friendship is a sheltering tree." ~ Samuel Taylor Coleridge

Before I highlight our day today, I would like to reflect on a conversation Peter and I had with Mattie on Sunday night after we got back from Ann's house. Clearly Mattie was processing his experience at Ann's during the drive home, and by the time he got home he appeared to be shutting down emotionally. When we asked him what was bothering him, we were blown away by his response. In a nutshell, Mattie told Peter and I that he is not like Abigail, he can't walk, run, jump, and do many of the other things she can do. He then told us that he couldn't do anything for himself, and then refused to help himself in any way last night. It was like he was regressing back to his baby days (which of course happens to any of us during trauma and times of stress), where he wanted us to do everything for him. Certainly due to the nature of his disability, we do have to do many things for him, but there are certainly other things that he can do independently. When we asked him what was going on, he responded that he can't do these things because he is SICK! It was at that point I told him that it is true he WAS sick, but that he did an excellent job fighting the "bone bugs" and that every known bone bug in his body has now been removed. So in essence he is NOT sick, but he is healing, and to heal means he needs to work hard and to also lighten up on himself as the process unfolds. I know that Mattie is very fond of Abigail, but it saddened me to hear him tell me that the only reason he went over to play with her on Sunday was to make her happy. Not unlike what occurred during his last two surgeries, I see Mattie trying to push people away and out of his life again. He is electing to be isolated, and I certainly can't blame him. None the less, as he self selects to be isolated, he is electing that lifestyle for me too. Somehow in the midst of balancing everything else I have going on with Mattie, being socially isolated only compounds our problems. In light of what transpired on Sunday, I am leery now to do things with other children. In fact, Ann has asked us to go away with her family this weekend, and of course I would like to, but then a part of me wonders if this is a good decision for Mattie? I have been debating this for two days now, and when I am in such a quandary I usually ask myself, why would I be going? Am I going for me and my needs or for Mattie's? Certainly it would be great if the two were aligned with each other, but I freely admit that they aren't. My number one priority has always been Mattie since he was born, and for the most part put his needs before mine, but at this point in time I feel so debilitated that if I don't start thinking about myself, I won't be able to be there for Mattie.

Mattie was up twice during the night (since he is receiving IV fluids), but basically slept soundly. I had to wake him up this morning so we could go to the clinic for his MTP-PE infusion. Mattie was so mad at me for waking him up, but he did pull out of it and even ate breakfast. When I got to the hospital, I pulled into the parking lot behind a woman who was driving a SUV and she seemed upset. It turned out she parked right next to me and I recognized her face. I recognized her because she is local news anchor. She started talking with me about how Georgetown is not user friendly, and she particularly honed in on the parking problem and the courtesy of the staff. She said she planned on doing a broadcast about these issues in particular. I felt the need to tell her that it was true that parking is challenging, but to park and have to wheel around someone who is disabled in this parking lot takes a special act of courage and faith.

I did not get Mattie into clinic until 12:30pm, and we did not get home until 7pm. That should give you an indication for the length of our day! When Mattie arrived in clinic , I learned he needed to receive pentamidine first, which is an IV antibiotic to prevent pneumonia. That infusion took over an hour, and then was premedicated with Tylenol and Atarax (an antihistamine), for his MTP infusion which began at 3pm. Despite having to be in the clinic a long time, Mattie was super busy. Jenny and Jessie worked with Mattie on a cardboard house structure, and Mattie also had a surprise visit from Brandon. Brandon (Mattie's big buddy), came to the hospital today, not for a check up or another procedure, but solely to play with Mattie. What you need to understand is that Brandon doesn't live around the corner. So he has a big commute back and forth, which makes his visit even more meaningful and special.

Brandon, Jenny, and Jessie did a great job entertaining Mattie, and I could tell he was having a good time. He designed a cardboard box house structure, and they pulled out Mattie's animal shelter that he created last week. Mattie developed a dog sitter character in this play scene, who was played by Jessie. The dog sitter was a little bit like Mary Poppins, in fact she sang the same song as Mary Poppins.... "Let's go fly a kite..." Any case, as the dog sitter was singing, all of a sudden a gust of wind blew her off the ground with her kite. Mattie and Brandon were holding the kite's string. Jessie was being blown around the clinic, and I tried to snap some pictures of this funny scene.

Left: Jessie is playing the dog sitter (who is a doll in Jessie's right hand), who is flying around the clinic on a gust of wind.

Right: Jessie and Denise (Mattie's social worker) trying to find a way to bring the dog sitter back to the ground!

Left: Brandon and Mattie pulling on the string and trying to reel the dog sitter back onto the ground.

While Mattie was playing I had two meetings. One was a joint meeting with Anna (Mattie's physical therapist), Dr. Synder (Mattie's oncologist), and myself. The second meeting was to discuss Mattie's lung pathology report. Anna and Dr. Synder know that inpatient physical therapy was something that interested me for Mattie. So we discussed this today. After our discussion, I completely agree with Anna and Dr. Synder. Mattie is not physically or emotionally ready for such intensive PT at the moment. Mattie is emotionally fragile and shuts down to people, so integrating new therapists and a new patient care setting into Mattie's world would not be good time at this point. In addition, Dr. Chahine does not want Mattie to put any pressure on his arms for at least a month, so that his ribs and bones can heal. However, inpatient therapy is definitely something to learn more about for the Fall. So I found this conversation very helpful!

When I met with Dr. Synder, she handed me the pathology report from the lung surgery.

I requested this documentation because I wanted to see in writing what the results were. So in essence, three of the lesions were calcified, viable tumors (meaning they were osteosarcoma and the tumor cells were alive and active within the lungs), two other lesions weren't tumors at all (so they weren't osteosarcoma, but thought to be small pieces of collapsed lung), and the remaining three were calcified but no live tumor cells were present (which Dr. Synder tells me these lesions were most likely osteosarcoma at one time, but either the viable cells naturally died on their own, or something killed them. This could be explained by chemo, MTP, or the combination). Now what gives me hope on the lung front is that all of Mattie's margins were negative, meaning that there wasn't any cancer in the surrounding tissue around the removed tumors. In addition, we know that four of the larger tumors were present in Mattie's body prior to receiving MTP in January. However, the smaller lesions which were undetectable through scanning in December (before MTP was added to the regimen), all turned out to either be dead or not cancer at all. I would like to assume therefore, that since MTP was incorporated into Mattie's treatment in January, that it is keeping the lung metastasis at bay. Or at least this is what I hope is happening. Dr. Synder did explain that one of the viable tumors was sent to Onotech, a biotechnology company in California who analyzes tumors and can report back findings such the types of receptor sites present on the cells. One Osteo parent mentioned Gleevec to me in a blog posting, and I have consulted with Mattie's doctors on this drug. Gleevac was first approved by the Food and Drug Administration (FDA) in 2001. Gleevec (imatinib mesylate) is a unique treatment for certain forms of cancer. It works by targeting, and turning off, specific proteins in cancer cells that cause the cancer cells to grow and multiply. Gleevac targets one cancer protein that causes Philadelphia chromosome positive chronic myeloid leukemia (Ph+ CML) and another cancer protein, called Kit, that is the suspected cause of gastrointestinal stromal tumor (GIST). So Onotech is examining Mattie's tumor to see if it has the Kit receptor, if not, Gleevec won't be effective for Mattie, however, most osteosarcoma studies show Gleevec is not an effective form of treatment for this disease. None the less, learning more about Mattie's tumor, may help in designing more effective treatments for him when his cancer returns. I am told that Mattie's cancer will return, it is just a matter of when.

This afternoon, Mattie had an MTP reaction within 20 minutes post infusion. During that time, he was shutting down and refusing to be examined. Katie, one of our wonderful HEM/ONC nurses from the PICU came down to visit us, because she knew we would be in clinic. It is always nice to see the nurses from the fifth floor, I miss them already! Katie helped us get Mattie a bed in the clinic to lie down in. Also during this time, Louise and Tamra stopped by briefly, just to say hello. But they could tell Mattie wasn't himself. Thanks for stopping by and sharing your warm smiles. Mattie did sleep for a bit, but when he came to consciousness, he was upset, had the chills, and was moaning. He wanted Demerol, which is the narcotic used to treat the rigors from MTP. When Dr. Synder came into the room she assessed Mattie and wouldn't give him Demerol. I began to get worried because she wanted me to take Mattie home as is. She then spoke to me out in the hallway and explained that Mattie is already on narcotics for pain from his surgery, and she did not want to expose him to more medication if he absolutely did not need it. Her reasoning made sense, and I always know she is looking out for his best interest. So I followed her advice. She told me to go back into the room and tell Mattie he is okay and could go home. I wasn't sure that was going to work, but when I went in, I basically told him that he was okay, the worst of his symptoms were behind him, and being home and out of the clinic will make him feel better. I also told him that the clinic was cold and it was warmer outside, and would feel better instantly. I said even I was chilly and shaking, so perhaps he was like me, and was just cold. He bought that, and I was able to transfer him into his chair and we arrived home at 7pm.

We want to thank Barbara L. for a wonderful home cooked dinner tonight. Your pork tenderloin was delicious, and we all enjoyed it along with your wonderful ginger cookies! Thank you Barbara! Your support is very much appreciated!

As this week unfolds, I am facing a daunting PT schedule that will begin for Mattie. Physical therapy four to five times a week in the hospital. I know he needs to do this, but do I have the stamina for this? I find with each week, some other new test is set before Peter and I, and the challenge is can we meet it? Not sure, nor do I know how much longer my back will hold on lugging around this wheelchair. I joke with Anna all the time, saying that I will be her next patient! So keep us in your thoughts and prayers. What we need is not only a Mattie Miracle, but we need the strength and fortitude to achieve this miracle!

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am not sure where you would be without your friends. No one's family is big enough to cope with an overwhelming situation like this. I often see cancer in my mind as a tidal wave, coming in and sweeping away all that was carefully built and leaving wreckage in its wake. And like the cleanup from those, one never knows what tragedy or trouble one will find as you search among the ruins for the pieces of your life. Friends provide the sustenance, the strength, the helping hands when you simply can not lift one more piece. What a blessing all your friends are and especially Ann and her family who have made you a part of hers. I am so glad you got out to spend time with Peter on Sunday and then had the connection of a family dinner with Ann and Bob and their wonderful children. I know you and Mattie are headed back to the hospital today for an infusion of MTP-PE and I hope the reaction is an uncharacteristically mild one."

Sunday, June 28, 2009

Sunday, June 28, 2009

Quote of the day: "Nothing you do for children is ever wasted. They seem not to notice us, hovering, averting our eyes, and they seldom offer thanks, but what we do for them is never wasted." ~ Garrison Keillor

Before I tell you about our day, I wanted to share four more pictures with you from Saturday's dance recital. Ann sent these along to me today, and I am so thrilled she snapped a close up of Katie's eyes.

Left: A picture of Katie right after I put on her makeup.

Right: Abigail getting ready to perform with her class.

Left: Katie with her good friend, Lexi. Lexi is visiting Katie for the week, and I have enjoyed getting to know her as well.

Right: Michael (Ann's son) with Abigail. Michael was a real sport, since he sat through a two and a half hour dance recital!

We woke Mattie up around noon today. He did not want to get out of bed and when we tried to lift him up, he felt like he was glued to the bed. Mattie had the good fortune of playing with Louise today. Louise just graduated from SSSAS and is headed to college in the Fall. Louise has a wonderful and calming rapport with Mattie, and after the week I had with Mattie, I wasn't sure how he would react with Louise, but I figured it was worth a shot, so that Peter and I could get a break together. Things worked out beautifully with Louise. They played Legos, played in the teepee that Louise gave him, and they even had a visit from my former student, Susan C. Susan lives in Illinois now, but she was in town and stopped by to give Mattie a few gifts. I am sorry I missed seeing you Susan! Thanks for thinking of Mattie.

Louise also shared two special books with Mattie, that were her favorites, The Chronicles of Narnia, and The Islander. Thanks Louise! While Louise was with Mattie, Peter and I went to Washington Harbor, which is an area along the Potomac River in Washington, DC. Though it was an overcast day and at times drizzling, we ate lunch outside. Looking at the water, the boats, people, and chatting. Peter and I love the water, and there is something very calming about being by it even in the middle of the city. After lunch we headed for a walk on Roosevelt Island. I have vowed not to go back to Roosevelt Island again with Mattie in a wheelchair, after he got stuck in the mud and fell over two weekends ago. However, today's walk was very pleasant, and I captured a wonderful sight along our walk. A beautiful deer! The irony is that Roosevelt Island is SO close to the city, and yet it is inhabited by deer.

When we got back home, Mattie was having a good time with Louise. After we said our good byes to Louise, we packed Mattie up and headed over to Ann's house. Ann had invited Mattie to a family cookout last night, but because he did not feel like going yesterday, she rearranged the cookout for today. I was happy that Mattie decided to get out of the house and to play with Abigail. When he got to Ann's house, he started off very tentative and remote, but within a short period of time, he began to connect with Abigail. They did all sort of projects together. One included a craft, in which Mattie designed an exploding gift filled with pom poms and feathers. You can see Peter opening up this gift below, and his reaction was to wince. You can see Mattie is turning away because it is as if he almost believes this gift will explode. Abigail is simply laughing at the whole dynamic!

Left: Peter opening up the gift Mattie created for him!

Right: Ann snapped a picture of me playing the "bad guy" in this play scene. Mattie and Abigail continued a game they started weeks ago. They built a fortress out of blocks, and had all sorts of dolls and characters defending it. However, my job as the bad guy was to destroy the fortress and capture, in this case, the special rubber ducky inside of it!

It was a lovely cookout and it was very special to be able to sit outside on Ann's deck and get fresh air. Ann's parents and cousin, JP, who is visiting from Boston, were also at dinner with us. We all had a fun time chatting and it is very special to us to have Ann's family in our lives. They help normalize things not only for Mattie but for us. In a way leaving the hospital and the community I had there is devastating on many levels. Home can be very isolating, especially for Mattie. Despite all the things Ann is balancing, she seems to understand what I am going through and really wants to help us achieve whatever is best for Mattie. For that I am forever grateful for her energy, commitment, care, and support.

When we took Mattie home tonight, he was complaining of pain, nausea (most likely from all the pain meds he is on), and to top it off, he needed a central line dressing change. My least favorite part of the week! We finally got Mattie to sleep at 11:45pm, which is why at 1:20am, I am still working on the blog. As we head into Monday, we have a full day in the clinic. Mattie will be getting an infusion of MTP-PE, and as you know anything can happen with that.

We want to thank the Doane's for a very generous dinner. We will be eating it for lunch, and I know Mattie will LOVE the book, Stink and the Great Guinea Pig Express and the Legos set! Thank you for thinking of him always and for the support. We also want to thank my neighbor, JP, for dropping off Mattie's favorite pasta and pizza today! Thanks for always looking out for us JP!

I end tonight with a message from my friend, Charlie. Charlie wrote, "It sounds like although they got a late start Peter and Mattie had a full day of play. I am sure Peter is exhausted; we often forget how much energy full time play takes both physically and mentally. I am so glad you got out on Saturday to help the girls get ready and then attend the recital. It is bittersweet because these things are so infrequent instead of a regular part of your life anymore. The pictures were adorable and you clearly did a great job with the preparation. I think that while you may have a lot of the symptoms associated with depression you are not depressed; you are sleep deprived. The sadness and sometimes hopeless feelings have actual reasons (Mattie's illness and your resulting life changes) Sleep deprivation has many side effects and it mimics or temporarily brings on many problems including: irritability, memory and attention lapses, low frustration tolerance, weakened immune function, alterations in appetite, moodiness, microsleeps, cognitive impairment, hallucinations, etc. Many of these are symptoms also seen with depression. While people may think sleep deprivation is not serious, it can have serious consequences for one's physical and mental health. I hope you are able to get Mattie and yourselves back on some sort of a reasonable schedule soon."