Saturday, July 11, 2009

Saturday, July 11, 2009

Quote of the day: "When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares." ~ Henri Nouwen

Charlie sent me this quote today. In addition to Charlie's daily postings she also sends me daily quotes. I so appreciate her efforts and I just wanted to acknowledge her commitment to us and her contributions. This quote really spoke to me today, especially after the dinner I had on Friday night. This was a dinner in which I felt the art of being listened to and understood, and though it is unsettling that solutions are not necessarily evident to many of our issues, in the end, it is not the solution that makes me feel better. What makes me feel better is knowing I am not alone, and others are willing to walk this horrible journey with me. I can assure you on some days, I would imagine it would be easier for some of you to just walk away. I joke with Ann about this all the time. Because though we are living this nightmare with Mattie, Ann and our Team supporters are right along side of us. Part of me wonders how you all handle the news each day, and yet not become so overwhelmed that you land up wanting to turn off your computer!?

Peter stayed with Mattie last night, so I could get a night of sleep without jumping up and down helping Mattie to the bathroom. Mattie is up at least two to three times a night, since he remains on prescribed IV hydration. However, despite being separated from Mattie last night, I had so much running through my head that I did not fall asleep until 3:30am, and by 6am, I was wide awake. Of course tired though, but rest wasn't happening for me. I also woke up not feeling well, and I am slowly turning a corner now, but feel very wiped out.

Mattie was invited over to his friend, Campbell's house today. We can't thank Christine and James (Campbell's parents) enough for this five hour break. The intention was to celebrate our anniversary which is coming up next week. But after last night's dinner, I gave some serious thought to what Peter and I should do today. When we have free moments which is RARE, there seems to be so much we want to do. Our big goal is to go through 12 months of things stacked around us at home so we can reclaim our space. We have also wanted to tend to our garden boxes (which have been filled with weeds due to months of neglect). Of course it is our anniversary, so technically we could have also dome something special. However, Peter and I are both not in that kind of mood, and decided instead to take on a project together at home. Clearly the digging through stacks of things is a priority, but both of us wanted to spend time outside today. So we decided to buy plants, and then came home and weeded and planted. I am sure that sounds like an absolutely boring way to spend together, but gardening is something Peter and I have always loved to do. We get a lot of enjoyment in being outside and taking in the beauty of plants and flowers. In addition, before Mattie got sick last July, he and Peter hand crafted an outdoor fountain for me. So today, we cleaned it out and got it up and operational. To me there is nothing better than the sight and sound of water. So after giving Ann's question some thought last night, I did find something today that I still enjoy. That is nature, the beauty of flowers, working hard to establish a garden, and the opportunity to work with Peter as a team to put this garden together. So in essence this was our anniversary gift..... time together, and time to talk in an uninterrupted fashion. This is priceless. Before we did all this planting though, we went out to lunch together, which was nice. It is so unusual for us to be able to just sit down in peace and eat, so when it happens, it takes us a while to settle down, but it takes us only seconds to appreciate these moments. I included a picture of part of our garden area, featuring Mattie's fountain in the center!

Peter went to go pick Mattie up at Campbell's house and by that time, I think Mattie was tired. But he had a busy and fun day! He did legos and also worked on some wonderful crafts that he gave Peter and I for our anniversary. Thank you Christine for thinking of this and for helping Mattie gift wrap them. The pictures of Mattie that you included were wonderful, and it reminded me of happier times. I took a picture of the items Mattie created for us. To me, these handmade gifts are so meaningful, and things I will always cherish. Mattie was very proud of his accomplishments and he felt happy that he could celebrate our anniversary in some way.

Left: A trinket box that Mattie made for me, with a picture of himself. In addition, inside the box was a piece of quartz that Mattie wrapped up for me as well.

Right: Mattie created a picture frame for Peter, and the picture of Mattie, I believe was taken during Campbell's last birthday.

When Mattie got home, he felt nauseous. This is something I need to talk to Dr. Synder, Mattie's oncologist, about. This stomach issue doesn't seem to be going away, and everyday I need to give Mattie his IV anti-emetic. I made dinner for us tonight, but Mattie refused to sit outside with us on the deck. Normally I would have caved into his desires, but tonight, I let him sit inside, and Peter and I went to sit outside and have dinner together. It was lovely to be able to sit outside, not to be confined indoors, appreciate our plantings, and hear the sound of Mattie's fountain in the background. As we head into Sunday, Whitney and Lesley (Linda's former Childlife interns) are coming over to spend time with Mattie. So this has been a weekend of breaks for Peter and I. I did not think this was going to make a bit of difference to my mood, and I still have my moments, but I can see these breaks are very necessary. It is also during these breaks that I realize just how physically awful I feel. I know Peter isn't far behind me, because planting today in a way was very taxing for us.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "What a difficult day Friday was. To be a full time playmate, caretaker and parent is really exhausting and even more so when dealing with Mattie who is limited in his mobility. When I was reading the blog at first I thought I am sorry that Peter did not get to go to dinner but, I think that it was actually helpful that it worked out that way. Mattie has more strength and more resilience than he wants you to know. He's become used to having you around to help and facilitate everything he needs so naturally he is unwilling to give that up. If Peter had gone with you last night, you would have heard only Mattie's view of the evening which was much more negative and you would have probably felt even more guilty for spending some time away. I am so glad you got to go out with Ann and Karen because even if there are no immediate solutions to be seen, it is helpful to have the issues heard and acknowledged. I am glad to see you trying to let go of the guilt (undeserved but naturally felt) so that you can focus on healing for both yourself and Mattie."

Friday, July 10, 2009

Friday, July 10, 2009

Quote of the day: "Kindness is more important than wisdom, and the recognition of this is the beginning of wisdom.” ~ Theodore Isaac Rubin

Before Mattie woke up this morning, our in home medical supplier delivered me a lightweight wheelchair. This delivery was an absolute riot, because this new chair was as heavy as the current chair. So I refused to accept the chair, and contacted Catherine, our case manager at the hospital. To cut to the chase, insurance doesn't cover transport wheelchairs, which is really what I need because of its very lightweight nature. So I did some searching around on the internet today, and purchased a transport wheelchair that is only 14 pounds. I am hoping this makes things a lot easier for us.

Mattie and I had a FULL day of playing together. We did a lot of trains, legos, and pretend play. However, several hours of play can be very tiring, on top of my already tired state. Typically Dan, a Georgetown University student, helps me on Fridays, but Peter and I were going to go out to dinner with Ann and Dr. Bob tonight, and we asked Dan to watch the kids this evening instead. As the afternoon rolled by and it was getting closer to the time for Mattie to leave for Ann's house, he had an absolute meltdown. He said he was in pain, he was nauseous, and did not want to leave or be without me. I tried rationalizing with Mattie, gave him some pain medication, and his anti-emetic and told him he would feel better soon. However, that moment did not present itself. The more I tried to help him work this through, the more upset he got. He made things so unpleasant that I figured there was no way I could possibly leave him with a sitter. So I called Dan and cancelled his visit, and then called Ann and told her we weren't going to get together. Ann could tell I was upset and at my wits end, and the thing that really bothered me was that Mattie did not want to leave the house because he said I did not spend enough time with him today. Mind you we were together solidly for the whole day, as we are everyday. So I clearly felt like he was manipulating me and the situation, and using pain as the excuse and the controlling factor. It is becoming very apparent that we need to take back control of our lives in our home. For the past 12 months, certainly we have been Mattie's parents in theory, but because of the circumstances we had to be around the clock caregivers and playmates. This is different from being his parent in many ways, or let's put it this way, it makes it very challenging parenting a child with a life threatening illness who spends more time living in a PICU than at home. So as a result the aftermath of this illness is a balance of power that is skewed in our home, and now we are having a meeting of the minds with Mattie as we take back control over our lives and our family. This transition isn't going to be a smooth one, and today was a perfect example. However, it isn't good for Mattie to isolate himself or me, and in many ways, I have to find my former parenting skills that I hung up on a coat rack 12 months ago and start applying them again. I am not saying that we provided no discipline or structure in his life this year, on the contrary I think we did the best we could under the circumstances.

I made it very clear to Mattie that his decisions have consequences, that by not going to Ann's this impacted other people's lives. I told him I was disappointed in his decision, because it was an opportunity to spend time with his friend, and also an opportunity for me to do something that involved getting out of the house. I let him sit with that for a while and about 30 minutes later, he decided to go to Ann's house on the condition that Peter or I stayed with him. So despite Peter looking forward to going out with us, he stayed behind at Ann's house, and I went out with Ann and another RCC mom and friend, Karen. I viewed tonight as a mental health break, because I couldn't spend another minute trapped at home. We had a lovely dinner out (thank you Ann!), but as usual, though not my intention, I feel like I have a way of dragging down a conversation. Ann and Karen tried very hard to help find solutions to certain issues Peter and I are contending with now, but like I told them, sometimes things can be so challenging and overwhelming, that I can't even conceive of a solution or action to lighten our tasks. None the less talking through the stresses and being heard for me are powerful gifts and help me process my thoughts and feelings. A typical day for me means that I rarely have a meaningful adult conversation or have the ability to express how I am feeling, so tonight was a very special moment. Tonight did show me though how pervasive Mattie's illness is in my life, and when Ann asked me what would be something fun for my family to do together, and I couldn't answer her, which was enlightening to me.

When we got back to Ann's house after dinner, it was late, and only Mattie, Abigail, JP (Ann's cousin), and Peter were up. In the car ride home, I asked Mattie if he had a good time. Mattie started to tell me that he did not have a good time at all, but then Peter stopped him. Peter told me that Mattie did indeed have a good time, was animated, and ate well (we want to thank the Peterson family for the dinner they provided all the kids tonight, thank you for your continued support!). However, this is not the picture Mattie was trying to portray to me. So part of me feels as if Mattie was trying to make me feel guilty for going out and leaving him for so long (as he did mention to me!), because from Peter's assessment, Mattie was doing great the whole time. Many of my issues revolve around how long I will have Mattie in my life, and this fear drives many of my choices and actions. So I land up feeling guilty if I miss a minute with him, however, I am also very aware of the fact that I am exhausted physically and mentally, and I have to let this guilt and other stuff go, in order to focus on my own recovery from this nightmare. It is now 2:30am, and I have no idea if what I am writing is even coherent, but hopefully you get the picture of what our day was like.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thursday was certainly a day of ups and downs. I simply do not understand medical professionals who have no connection or understanding of the patients they are working with. The cardiologist was incredibly insensitive and obtuse with regard to Mattie and his situation. Maybe after the confrontation with you she will be a little more respectful of her patients' needs. One can only hope. I am sure it was difficult to focus on what she said during the conference with Mattie in the room. It is hard to know what he absorbed of that conversation but you need to be prepared for Mattie to raise some issue with it at a later time. As for the comments of the other osteosarcoma mom, well, I am sure that what she said goes through the mind of every parent who has a child in a life threatening situation. Whether one opens up that conversation with another parent is a different thing altogether. Every parent's beliefs are their own, each child's situation is different and expecting some sort of consensus on an intensely personal topic like that just isn't possible. In fact, most parents' opinions will change day to day or even more frequently depending on what is happening at the time. As Dr Snyder said, no one can (or should) judge your decisions. Only you and Peter know what is right for you and for Mattie. And on the positive note, I was delighted to see Mattie working so hard at therapy. It looks like a good motivational process is in place; I hope it continues at a good pace."

Thursday, July 9, 2009

Thursday, July 9, 2009

Quote of the day: "What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others." ~ Pericles

Mattie shocked me last night. He went to sleep at 10:30pm. I decided to also go to sleep at that hour, but it wasn't easy for me, since I am used to staying up until 1am or later. Mattie was up at 4am, 6am, and then finally got up at 8:30am. As much as his bedtime hour surprised me, how he greeted me this morning truly caught me off guard. I had just gotten out of the shower, and I heard rustling in Mattie's room, and before I knew it, he managed to slide on his rump to his bedroom door and open it. We both startled each other and then laughed. I made a big deal out of his initiative and he felt very proud. Though I felt I needed to ask him if he would have done this if he was connected to his IV, and he said NO, which was the right answer. I learned my lesson early on the hard way. I left Mattie unattended one morning connected to an IV, and the next moment I checked on him, his line was filled with blood. I was in a panic, because I did not know if he was bleeding, pulled the central line out of his chest, or what. So now if I leave him unsupervised, it is always without an IV attached.

Mattie and I arrived at Georgetown Hospital at 11:20am, for his 11:30am cardiology appointment. Needless to say we did not get home until 5pm. Another long day in the hospital for us! Linda met us in the cardiology department and helped me throughout the entire process. I am not sure where I would be without Linda (Georgetown's Childlife Specialist). I am not just saying this, I truly mean it very seriously. Linda has helped me under the worst of circumstances, and she isn't only a calming factor in Mattie's life, but I fully admit, Linda is important for me as well. Without Linda, I would be going through scans, testing, and other daunting procedures on Mattie alone. I can assure you it is frightening to do any of this, and now as we are off active treatment, this process is almost terrifying. Mattie did quite well through the EKG and Echocardiogram. The techs were lovely and they had Sponge Bob playing in the background, so Mattie was glued to this yellow creature. The problems arose once the testing was complete. The tech told Mattie he could get up, but his shirt on, and could go back into his wheelchair. Big mistake. The next thing we knew the cardiologist came into the room, and told Mattie she wanted to speak with me privately and then would come back to examine him. I told her she should examine him first so that he could go back to the Lombardi Clinic with Linda and play. I am sure I caught the doctor off guard. Most medical doctors don't like to be directed by their patients or the patient's family. She did agree to examine Mattie first, but wanted him to take off his shirt and get back up on the exam table. Now you have to understand getting a shirt on Mattie isn't easy with all of his surgical sites, and I had just lifted him back into the wheelchair. So when she told us this, I just looked at her, and I basically said she had to be kidding. I am sure I was labeled as the problem MOM of the day, but I frankly did not care. Her whole demeanor with Mattie was gruff and insensitive. Though I find most people in a hospital setting have very little knowledge of how to work with kids who have had limb salvaging surgeries. It is almost as if this is either so rare, or simply not discussed in one's medical training. Any case, the doctor agreed to examine Mattie in his wheelchair and with his shirt on after I barked at her. Mattie did not like the exam, but when she started pressing on his stomach, he lost it, and I never got him back at that point! He kicked and punched the doctor. Many of the behaviors I remember Mattie doing as a toddler have resurfaced, which isn't surprising since under times of crisis, we go back to our familiar behavioral patterns. Those patterns for Mattie involve no verbal communications, and simply acting out and expressing emotions with his body.

After the exam was over, Mattie refused to leave my side. He wouldn't go down to the clinic with Linda, and in fact he told Linda to leave. I felt bad for Linda, and then I felt bad for myself and Mattie. It wasn't a pretty picture. We spent at least 20 minutes rationalizing with Mattie. I had to meet with the cardiologist to give her a history and to discuss the results, but Mattie refused to leave me. So I had no other choice but to take him into the meeting with me. So Mattie heard the results of the testing, but was quiet throughout the meeting. In essence the cardiologist told me that Mattie's results were similar to the ones presented in June. Specifically, Mattie's shortening fraction (a way of measuring left ventricle performance. Instead of measuring and ratio-ing blood volumes, the shortening fraction measures and ratios the change in the diameter of the left ventricle between the contracted and relaxed states) and ejection fraction (measures how the left ventricle, a chamber in the heart, relaxes to fill with blood and then contracts to pump the blood out) have decreased in function. So she labels him as having heart dysfunction, as a result of the toxicity of the chemotherapy Mattie received. The cardiologist is opposed to giving Mattie more Doxorubicin next week. Doxorubicin is a chemotherapy Mattie had over the course of the last 11 months, and it is very cardiotoxic clearly. However, Mattie hasn't received his lifetime dosage of this drug, and therefore it was decided before today's testing that two more dosages of this drug would be beneficial for Mattie. However, today, I was crushed to hear the cardiologist's recommendation, because Peter and I both feel that more chemotherapy is necessary to potentially kill any dislodged tumor cells that may have occurred during Mattie's sternotomy. As you know, three of Mattie's lung lesions were viable tumors. In addition, the cardiologist explained that this damage to the heart is most likely permanent, and this dysfunction could continue to get worse over time. The cardiologist talked with me about Zinecard, which is a heart protector drug that is sometimes given to patients before receiving high dosages of Doxorubicin. Some of you may remember that I pursued this drug for Mattie, but Georgetown kept telling me it was in a national shortage, and Mattie really did not need it because the toxicity of Doxorubicin he would be receiving wasn't that high. However, as his mom, I can't help but think that I shouldn't have settled for this answer. I should have demanded they find the drug. Yet the catch is if I waited for the drug to be located, then this would have held off Mattie's chemotherapy treatment. Damned if you do, damned if you don't, because we know he wouldn't be here today without chemotherapy. I can't look back on this decision, I have to trust that this drug was indeed not available as was told to me, and that it was the right decision to start treatment as soon as possible. But a part of me wonders, if he got Zinecard, would we still see these heart dysfunctions today?

Mattie and I then headed to the Lombardi Clinic after this appointment. I decided to take Mattie to clinic for two hours, because it made no sense to run home, just to come back for a physical therapy appointment. The clinic was an absolute zoo today. Jenny was away, and Jessie was there and working with eight children at one time. At one point, I looked over at Jessie, and all the kids wanted something from her at the same time, and yet she remained calm, helpful, and always professional. In all reality a TV crew should have been in the clinic, because this would have been a perfect clip for a Tylenol commercial. How Jessie managed all of this without developing a headache by the end of the day is a miracle. Jessie helped Mattie, despite being pulled in a thousand directions. They designed a box for the rubber frogs that Linda gave Mattie earlier in the day. In fact, they made a beautiful pond out of a cardboard box along with lily pads. While Mattie was working on this, I had the opportunity to speak to a mom I haven't seen in a long time. Her daughter is an osteosarcoma survivor. However, while I was talking to her about Mattie's condition and the additional concerns we now have about him, she happened to say to me, when do I think enough is enough?! Meaning how much more will I put Mattie threw. I guess this caught me off guard, because I assume all parents with kids who have osteosarcoma are going to fight until the bitter end. If something can be done, you do it. Any case, her comments stayed with me all day. In fact, Ann called me when I was in clinic and I guess I must not have sounded like myself, and she was concerned.

I guess what I am learning by all of this, is I feel incredibly stuck. My life will never be normal. I will continue to live my life making life and death decisions for Mattie, in hopes of saving his life, or giving him a chance at it at least. But what happens if all of this is for naught? How do you keep on living without your child? I don't have an answer for this, other than now I know I am profoundly sad and deeply impacted by Mattie's illness. This illness has absorbed me, and nothing I do really can allow me the chance to forget about it. I am drowning in all sorts of emotions, that I can't particularly express it too well tonight. I did write to Dr. Kristen Synder today, Mattie's oncologist, who is on vacation. But Kristen responded right back. We talked about the cardiology results and she also told me that no one can judge the decisions we make. What truly touched me is she said, "but it is only after we have walked a mile in your shoes that we can even suggest we know how you feel. And, Vicki, in this case, a mile just isn't long enough to even remotely comprehend what you are going through." Kristen isn't only a competent doctor, but a doctor with a heart and great understanding. Which is why I can't say good-bye to her as she leaves Georgetown full-time.

Mattie had another productive physical therapy session today. Linda joined us for part of it, and helped me take pictures and also participated in a scooter race with Mattie. Normally I try to play an active role in therapy, but Anna can see my back hurts. Anna and Catherine, our case manager, are on top of the wheelchair issue, and tomorrow our in home supplier is coming to take back Mattie's current chair and are giving me a lighter chair. We shall see what this looks like. I think the photos from today's session, will give you an idea for what was achieved.

Left: Linda got into the tube that Mattie was throwing balls into and snapped a picture. You can see that Anna has Mattie sitting on a structure that forces him to put weight on both feet, so he has to balance himself.

Right: Mattie and Linda racing. It was a right foot race only. So it was "Steve" vs. "Froggy" (Linda's right foot).

Left: Mattie working hard to get around one of the cones in the obstacle course.

Right: Mattie foot painting! Mattie LOVED IT!

Left: Mattie decided to paint Anna's mirror with his feet, which is fine, because it gives Mattie the opportunity to stretch his legs and build up strength.

Right: Mattie holding up his behavioral chart. He was successful and did everything he was asked to do this week! You can see the stickers for each day of work.

Left: Mattie's well sought after prize. He has wanted this ball all week, which Denise, his social worker, was holding for him! He already knows what he wants to work toward for next week. Excellent.

On the car trip home, Mattie fell asleep in the car, which is excellent. That means to me that he was working hard with Anna. I did not let him sleep for more than 15 minutes, and then woke him up. We want to thank the Murphy family for a wonderful picnic dinner. Mattie loved the pasta, broccoli, and watermelon. He actually ate quite well. I am a fresh vegetable fan, so I appreciate all the wonderful farm fresh vegetables! Thank you Elizabeth for the lovely gift as well. I will happily use the the green tea lotion and soap. Thank you for thinking of me and your continual support of my family.

After dinner, Peter took Mattie out for another walk. They walked by the water and I hear they saw a mother duck and her ducklings. Mattie and I have a wonderful story about a mother duck and her ducklings who we saved about two years ago in a storm drain. I always wanted to develop a children's story out of it, and perhaps one of these days Mattie and I will do this together. He reminded me of our duck rescue tonight! I am happy he can remember these special times together.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It sounds like Mattie is beginning to get into the idea and routine of physical therapy. I know you are happy about that because cooperation is so critical to getting well. I hope you can find an appropriate lightweight wheelchair to use until Mattie is ambulatory again. Lugging a heavy chair around, especially in and out of a vehicle is awkward and oftentimes leads to an injury for the helping person. However, the thing I wish most for you right now is the re-creation of family routines (meals, walks, bedtimes, etc) and Mattie's acceptance of the need and respect for those. I know that once that happens, the start of healing emotional wounds will not be too far behind."

Wednesday, July 8, 2009

Wednesday, July 8, 2009

Quote of the day: “Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out. It's all about timing.” ~ Stacey Charter

You would think between physical therapy and a long walk outside last night with Peter before bed, Mattie would be tired by the end of the day. But sadly he isn't. Mattie was up until 2am on Tuesday. Needless to say, you know who was up right along side him. Last night we played a made up race car game and then eventually took out his computer and we designed a lot of wonderful pictures on it. Mattie even showed me how we could record our voices on his computer and play them back. So he decided to sing a song and record that. He made up a song about loving me. It was very cute, and it is in these simple and spontaneous moments, you see why this torture is all worth it. We had a fun time playing together, but by 2am, I couldn't play another minute. The lights went off, and I could hear Mattie still up, but eventually he fell asleep.

This morning, I woke up before him, as I usually do. While I was in the shower, I could hear someone pounding on our front door. But the pounding did not stop. So I got myself together quickly in order to find out who it was. It was someone to fix our air conditioning unit. But the fun did not stop there. Over the course of the next three hours, people keep knocking and coming on in. At one point I had four different people fixing something in our home. You may be asking why was all this going on? Well things have been breaking down in our home for months now, we report them, but because we haven't been home to follow up on these repairs, they haven't gotten done. Some of the complaints are serious issues, such as our balcony door was sealed shut and we haven't been able to open it for months. This happened when the complex did that massive construction job I told you about back in April. Well now it is July, and NO ONE ever responded to our several calls to repair this door. So in my usual fashion, which I perfected this year out of necessity, I called our complex manager and gave her a mouthful about my disappointment about service and follow through. This explains why people were jumping today, in fact, almost all the things I have requested to be repaired over the last months, have been addressed today. Amazing, isn't it?! One of the people who came to fix my screen door, was absolutely hysterical today. He took out his cell phone and had a personal call for 30 minutes on my balcony. Under most normal circumstances I would have said something, but today, I was more fascinated by his total lack of regard for his job and the fact that he could see I was busy with Mattie. But all these people working in our home and managing them was a little more than I bargained for today.

Mattie was just watching all the action around him as things were getting repaired, and this 30 minute personal phone call was so noticeable that even Mattie asked me why this man was on the phone for so long. In the midst of all this chaos, I did get Mattie ready for his physical therapy appointment. I find it interesting to note, that yesterday and today, Mattie has brought a toy or something to play with to physical therapy. But it is a mindful selection, because he is bringing something he can incorporate into his sessions. Yesterday was these bendable sticks called Bendaroos, and today Mattie brought in these bug toys that can crawl down surfaces such as mirrors and walls. Mattie thought that he could use the bugs during his standing and reaching part of the therapy session. Anna was thrilled to see Mattie's initiative!

Mattie had another good physical therapy session today. He is motivated to complete his behavioral chart, because after accumulating so many stickers on the chart he can receive a rubber ball which is being held for him in clinic. Mattie did exercises to strengthen his right foot, which entails standing, stretching, and reaching. You can see Mattie having a foot race with Anna on a mirror. The rubber balls attached to the mirror were part of the obstacle course Mattie set up.

Mattie also spent some time standing up and throwing balls into a barrel. He actually did very well on this task, and we kept reminding Mattie to put pressure on his right leg while standing. At the moment, he really shies away from using this leg altogether. I love this picture though, because you can see the ball Mattie threw in mid air, and he is very focused on it and for it to make it into the barrel. Mattie also allowed Anna to stretch out his right leg. So overall, I would say it was another productive and successful physical therapy session. Unlike how therapy progressed upstairs in the PICU, therapy now is still fun, but it is more focused, productive, and tailored to meeting the goal (which is to get Mattie stronger and up on his feet). I can actually feel the difference. So hopefully so does Mattie.

After our appointment was over, we got back home, and Mattie continued on me to play with him. However, I needed a break, my back was aching from lugging the wheelchair, and I needed to take Advil today in order to proceed on. I have talked to Anna and Catherine, our case manager, about a lightweight transport wheelchair. Thank you Lauren for mentioning this and I thank Charlie for capturing the information on line for me!

When Peter came home, we encouraged Mattie to eat something, and helped him a bit. But then Peter and I sat outside on our deck for 30 minutes to eat dinner without being interrupted. We wanted Mattie to join us, but he refused. I am trying to claim back time where we are all eating together again, and I figure if Mattie doesn't join us, maybe observing us will be helpful or inspire him. There has been a lot lost this year, and family meal times is just one of the things I could name right off the top of my head. We would like to thank Jill K. for a lovely Greek dinner! Thank you Jill for supporting us all the way from Canada!

As I am writing this blog, Peter took Mattie out for another walk. They have been gone for 50 minutes. I wish the fresh air would knock Mattie out, but at least the change of scenery is good for him. As we head into Thursday, Mattie has an echocardiogram at 11:30am, and then we will spend the rest of the day in the Lombardi Clinic until Mattie has his physical therapy appointment with Anna at 3pm. It makes no sense for me to run back and forth with Mattie, especially moving that wheelchair. This echocardiogram is important, because it will dictate whether Mattie qualifies for more chemotherapy next Thursday and Friday. So stay tuned.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Getting well is a process. What you have been through in the last year was not about getting well, it was about survival. Now that you've come through that you can begin to look around and plan for the healing process. I agree with you that experiencing camp with other survivors would be a good move for Mattie. He would be with counselors and children who understand what he has gone through and the situation would be set up so that he could do creative and interesting things in spite of his physical limitations. Many of the children who attend these events get to try things they did not get to do before they had cancer like horseback riding or other sports that use adapted equipment. Tuesday's physical therapy session looked like it went well and Mattie clearly worked very hard at it. It appears that the talented therapists have come up with a reward system that will work for Mattie. Learning to use muscles that are unaccustomed to full range of motion or bearing weight is very exhausting even if it appears to be a game. The positive side of this is that the exercise will probably help Mattie sleep better. I have to tell you how much I admire your well thought out and measured response to Mattie's statement of "not liking himself". It is difficult to shut down the auto response of "that isn't true" or "but we love you" etc, to really hear what is behind the statement. I think that is so important and reinforces Mattie's sense that his concerns are heard and validated. He needs this to be able to move forward into healing."

Tuesday, July 7, 2009

Tuesday, July 7, 2009



Quote of the day (Thanks Daddy!): "Life must be lived forward, but it can only be understood backwards." ~ Soren Kierkegaard



My Dad sent me the above quote weeks ago, and when I first read it, I liked it a lot. But I did not post it on the blog until I was in the right mood, and it fit the message I wanted to convey. Well that moment has come! I think what I like about Kierkegaard's quote is it illustrates to us how to conceptualize and understand a child whose body and mind have been ravaged by cancer. Certainly any of us on a given day live our life moving forward. After all, we are a very future oriented society. But for most people, and especially children with cancer, it is impossible to move forward, without looking back at that person's history (in this case the type of cancer, the treatment, the extent and duration of treatment, where the treatment took place, the family system, etc...). By looking back, it explains many of the issues, feelings, and behaviors present before our eyes today. Or in other words the aftermath or the shell of the patient we see today. Denying the past only denies a richer future. I had a revelation today, or maybe I knew it all along, but faced it today, that in order to free Mattie to move forward, I must help him understand what happened during these last 12 months. It is only by coming to peace with the past, that the true Mattie will be able to develop and unfold. What sparked this revelation today? Plain and simple, it was something Mattie said to me while awaiting his physical therapy appointment. Keep reading, I will explain this in a minute.





Before I tell you more about my revelation, I wanted to share the finished LEGO carousel project with you. I need to take a picture of it during the day time hours, but this will give you a feeling for its intricacies and amazing moving parts! This was such a labor of love, and there is no way I am breaking it apart for a while.



Mattie went to bed at 12:15am on Monday. Though that sounds late, that is actually early for Mattie. I am hoping as he gets used to being home, that this bedtime hour will continue to become earlier. We are certainly working toward that. However, Mattie was exhausted this morning and couldn't wake up. At noon, I woke him up, and got him ready for the day. He had physical therapy today at the hospital. Our appointment time is 3pm, Mondays through Thursdays. This is the time when the PT gym isn't as crowded and Mattie can have more free rein over the equipment there. I did speak to Anna today about a different wheelchair for Mattie, because I can't keep lifting this chair in and out of the car day in and day out. It is way too heavy, and in my more weakened condition, I could land up hurting myself. Actually my biggest fear is something happening to myself or Peter, because this would be bad news for Mattie.



While Mattie and I were waiting in the PT waiting area, Mattie turned to me all of a sudden and said, "I don't like myself!" That is an enormous statement, that could mean anything. Instead of placating him or trying to insert my own thoughts into his thinking, I stopped myself, and asked him to tell me more about this statement. At which point he became closed off. However, a few minutes later he went on to say that he has never liked himself. I did not think that was true, so I said did he feel this way always or after he got sick? He admitted to feeling this way after he developed cancer. Then specifically stated that what he doesn't like about himself is that he "had surgery." He doesn't like that he has scars, that he can't walk, and that he can't do anything for himself. This was a lot to hear in the middle of a waiting area, when PT was about to start. All during his PT session, I tried to process how he was feeling. I certainly don't blame him one bit. He looks different, he feels different, and he is different physically and psychologically than most other seven year olds. I can't deny that, but he is still my seven year old, and despite acknowledging all of these differences, I told him he is very special, that going through this will make him stronger, and that none of his other friends can say they survived cancer. Nor can they say they have bionic parts. I told him that when these parts start fully working, his friends better watch out. With that, he started to laugh. However, this subject matter came up in the car ride home as well. It is firmly in his mind, and despite trying to help him manage these feelings, it is heartbreaking to hear your seven year old say he doesn't like himself. I realized for the first time, or maybe accepted it for the first time, that osteosarcoma will be something I am fighting all my life. Not just physically, but I will be fighting its long term psychological effects. That alone was a daunting proposition. I can see as we get further out of treatment, the mental and emotional anguish that Mattie survived through is slowly being revealed. Certainly I could brush that under the rug, and try to deny it and move forward. But whenever you deny something, it only is going to fester its ugly head somewhere else. So we might as well attack the problem head on. I also realized that my desire to keep Mattie protected from others in the cancer community, meaning not attending camps designed for children with cancer, is a bad idea. He needs to see others like himself, living and thriving. Mattie certainly has wonderful friends, but he can't keep up with them right now, and a part of me always feels on these playdates that in a way it is unfair for his friends. I land up feeling like we are some sort of charity case, which I am sure is not how others feel, but I fully admit my own insecurities. I certainly embrace typically developing children interacting with children who have special needs, but I also must understand the importance of making Mattie whole and accepting himself. Until he does this, he will have a hard time integrating back into mainstream society. So I guess his comments to me were a revelation today, and one that will have to force me out of my comfort zone in order to explore other options for him that will help him develop socially. I think he needs to process his feelings (well of course on a child like level, most likely through play and activities), but the only true way to do this is with other kids who have experienced similar issues.



I am happy to report that Mattie had a very positive session with Anna and Cathy. Cathy will be working with Mattie on days that Anna is unable to. Cathy also has a lot of energy and is very patient with Mattie. Anna and our social worker, Denise, devised a behavioral reward chart for Mattie this week. He can put stickers next to each category he successfully achieves or attempts to achieve in physical therapy. If he accumulates enough stickers, then he will win a prize at the end of the week. The prize he has his mind set on is a rubber ball that sits in the Lombardi Clinic. So I am happy for the moment that this incentive system is working for him. Mattie started the session off on a platform swing, and used "Steve," his right leg to push his body. When you compare his right leg to his left leg, you can see how it has atrophied. However, Mattie really made great efforts today. In addition, he brought in some waxed sticks called bendaroos that he got from Ann, and he used them in therapy. He actually stuck these sticks to the walls and had to use his arms to reach up and place them in front of him. Anna carried Mattie to the wall. But the therapists were amazed, because Mattie put his back to the wall, and literally used it as a brace to start walking. Anna commended Mattie, because she said that is an excellent way to start moving around. That alone was amazing, but the next thing caught us off guard. Check out the photo of Mattie placing the bendaroos on the wall. Do you notice how far up his arms are reaching. Both arms, not just the left arm! I was shocked, because he keeps his arms close to his sides, but in all reality this shows me when pushed how much he can really do! This to me was a very positive step!

Mattie even went on a scooter today and had to push himself up a ramp using only "Steve." He was quite successful, but by the time this was over, he seemed worn out. Pictured in the photo are Anna, Mattie, and Cathy!




When we got back from his session, Marisa came over to help me with Mattie for a couple of hours. Marisa is the daughter of a colleague and friend of mine from the George Washington University. When Marisa arrived Mattie felt nauseous and wasn't in the best of moods. However, Marisa held her own, and by the time I got back, Mattie was playing and seemed to be out of his funk. I am happy that Marisa helped to work this through with him, but leaving Mattie is always a hard thing to do because I never know when he will need me to come home. I certainly wouldn't want anyone caring for Mattie if he was melting down or in need of my attention, this can be hard to manage.

While Marisa was with Mattie, I landed up running around doing chores. It is funny that while grocery shopping I bumped into Dr. Bob and Abigail. They were surprised to see me in their neck of the woods, but the irony is I have gotten so used to shopping near Mattie's schools, that to me this drive is commonplace. But I am sure it catches others off guard that someone from DC would commute to Virginia to shop. One of my main goals today was to go pick up some things at the grocery store to cook for Mattie. Dr. Synder, Mattie's oncologist, is concerned about his nutrition. In fact she has me keeping a food diary for Mattie starting today. So I decided to go shopping and buy fresh vegetables, sweet potatoes, and chicken, and try to cook some of the things Mattie used to like before he got sick. His stomach, I have no doubt has shrunk since chemo, and therefore, he must be served very small portions otherwise, he will be completely turned off to food. So far, I am happy to report that he ate a bowl of fresh cooked spinach that I made for him. But I really want Mattie to stimulate his appetite naturally rather than using such things as Marinol. Marinol is a unique prescription medicine that relieves multiple symptoms. The United States Food and Drug Administration (FDA) approved Marinol to treat nausea and vomiting associated with cancer chemotherapy in patients who have failed to respond adequately to conventional treatments. The FDA also approved Marinol to treat appetite loss. Health care professionals may prescribe Marinol to help stimulate a patient’s appetite so he or she will want to eat again. But you should know that Marinol is a Marijuana derivative.


In addition, we learned that a preliminary report has come back from Oncotech in California. It has revealed that Mattie's tumor was 80% positive for Vascular endothelial growth factor (VEGF). An abundance of scientific evidence now points to the central role of both angiogenesis (the growth of blood vessels from pre-existing vasculature) in tumor growth and the role of vascular endothelial growth factor (VEGF) in angiogenesis. So if Mattie's cancer come back again, there are two forms of experimental chemotherapies that target VEGF receptors, such as Gemcitabine and Docetaxel. In addition, the analysis showed that Mattie does not have any Kit receptors on his tumor cells, which means that Gleevec (a targeted cancer drug) would not be an effective treatment for Mattie. What Peter and I have come to accept, we don't like it of course, is that there is nothing we can give Mattie NOW other than MTP-PE to try to prevent an osteosarcoma recurrence. So at this point, the best our advanced healthcare system in this Country can offer us is the wait and see approach. Amazing, we can come up with effective treatment regimens for HIV/AIDS and yet we are still in the dark ages with cancer. Why is this?

We want to thank Nicole Lucarelli for a wonderful and very generous dinner tonight from Papa Razzi. In fact, Peter and I ate outside while Marisa was watching Mattie. It was nice to eat for a bit and be able to talk with Peter about various things today.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Mattie is at that difficult age where he has the ability to decide whether or not to cooperate but he isn't old enough to be able to see past the immediate situation to the distant outcome. I think that just like the chemotherapy, you are going to have good days and bad ones with this. I believe the key will be to find some sort of immediate (within an hour or two) reward that Mattie is willing to work for. Mattie is also intensely competitive so perhaps a chart of his progress where you can mark some daily measurement might be useful? I think that the prospect of getting a "zero" or going backwards on this might be enough to motivate him on some in-between days.I do think that the public has no understanding of how having a life threatening or chronic disease affects your life but your blog is certainly a good chronicle of how that works. Loss of privacy, personal space, little to no sleep, lack of routine, emotional and physical isolation, and tolerance for previously unacceptable behaviors from others, the list could go on for a page. Not only is there no protocol in place for what to do when there is no current evidence of cancer, there is no roadmap or support system in place for the family of a cancer patient either. In both cases, it is a set up as you go system. Not exactly what you want if the desired result is the long term healthy survival of the patient and the family. I hope your blog results in improved plans for both post cancer treatment and family support by the institution."

Monday, July 6, 2009

Monday, July 6, 2009

Quote of the day: "Survival is a form of resistance." ~ Mendel Le Sueur

I began my day by receiving this lovely picture in an e-mail from Carey, a fellow Osteo mom. Carey and I have never met each other, but we became acquainted with each other through Mattie's blog. Carey's sister follows Mattie's blog and connected Carey to us. Carey has an 11 year old daughter with Osteosarcoma, who was diagnosed about a week after Mattie, in August 2008. Carey and I have since exchanged many e-mails with each other, and we keep connected on the progress of our children. Carey sent me this photograph, because you will notice a young lady displaying the fact that she is wearing a Mattie Miracle wristband. I introduce you to Alexandra, Carey's niece. Next to Alexandra, you will see a cute girl with a white hat looking at her cousin with a big smile, this is Lauren (who has osteosarcoma). Alexandra purchased a Mattie wristband and we deeply value her whole family's support. Alexandra lives in Maryland and is a high school senior. Alexandra had her own host of medical issues to overcome when she was younger and I have no doubt this gives her insights into children who are living with serious medical issues. Alexandra just got back from an exchange program in the Netherlands, and apparently wore her Mattie Miracle wristband and spoke about Mattie there, so the message about osteosarcoma is getting around. Thank you Carey for passing along this wonderful photo and for sharing this hard journey with us.

Mattie had a rough night of sleep on Sunday. He was literally up every two hours. Mattie complained about everything from pain to nausea. By 6am, I couldn't take it anymore and gave Mattie more pain medication. He finally went back to sleep, and slept soundly! I woke Mattie up this morning so he could eat and then get ready to head to clinic. That went smoothly, but when I got to my car, I realized all our hospital boxes and supplies that we keep in Peter's car, were still in my car. Peter transferred them to my car on Friday, so we could take his car on our road trip for the weekend. So before I could load Mattie into the car, I had to unload our car, and repack Peter's. One thing became very clear to me, we not only have a ton of stuff at home, but we have a mobile unit right in the back of Peter's car. Literally I could set up camp with the supplies we have stored there. This certainly makes sense since we lived out of these boxes and supplies during 11 months in the PICU. So we have two lives to contend with and to clean out. Our home life and our car/mobile life. Wow, that was a little too overwhelming for me today to face.



When we got to clinic, Mattie played with Jenny for a while. He was motivated to continue working on his Hope Fountain or Waterfall as he called it today. I included a photo of how the fountain was transformed today into a jungle theme. You can see green construction paper representing grass, tube like structures representing palm trees with a yellow monkey climbing between the trees, the actual bluish water of the hope fountain, and of course these huge bugs that have made this jungle area their home. The yellow structure in the lower left hand side of the photo represents a bee hive! There is something for everyone in this creation! Mattie spent a great deal of time on this, and then of course wanted to play with the set he created.


It was fascinating to watch Mattie transfer his demanding behavior from me onto Jenny. He had Jenny jumping, and Jenny had other children to balance. Peter and I have talked about the need to reinsert more discipline into Mattie's life. This was impossible to do when he was so sick, but now that we are trying to establish a more normal life, Mattie needs a better understanding of boundaries. He needs to learn the art of being patient, of playing by himself, and the need to respect our decisions. Today actually transpired a bit different from how I thought it was going to go. After several weeks of receiving MTP-PE and having a negative reaction, this was the first week in a long time, where Mattie had NO reaction what so ever. I was unprepared for this, but of course ALWAYS welcome it. However, Mattie was very belligerent in clinic. He gave Dr. Synder, his oncologist, a hard time. He kicked her, and smashed her hand against his wheelchair multiple times. There was a level of anger he was expressing, and during these moments of frustration, he was unable to use words and express himself. But Dr. Synder did not give up. She finally got Mattie to use words rather than physically hurting her to express himself. In fact she wouldn't let him leave the room until he used words. She was a brave soul, because it wasn't easy to sit there and get hit. Dr. Chahine, Mattie's lung surgeon, also came by to examine Mattie's incision. That did not go well either. Mattie did not want Dr. Chahine touching him, and all he kept saying is he doesn't like doctors! Fortunately Dr. Chahine did not take it personally. Mattie's incision is healing beautifully and Dr. Chahine feels that Mattie can start putting pressure on his arms next week. Wow a month goes by quickly!



The real issue for the day though was physical therapy! Mattie gave Anna an amazingly hard time. He shut down and did not want to do therapy. He said it wasn't fun, and he did not want to do it. As usual he claimed to know better. Perhaps I should let the therapists take over at that point, but I feel as a parent it is my responsibility to correct and direct Mattie. I wasn't going to let Mattie talk himself out of therapy. We talked about how therapy may not always be fun, it will be work, but this work is necessary to walk and get better. I told him if he wants to go back to school and play with his friends at school, he has to be walking. Anna had Mattie standing for 15 minutes on both of his feet. He actually was very uncomfortable with this, and then started complaining that his right foot hurt. But I kept reminding him that his foot is no longer fractured and he can put pressure on it. I frankly wonder how other children do therapy without their parents involved in the session. It must be great for them, but for me, I feel the need to play an active role, otherwise with all of Mattie's back talking and attitude nothing would get accomplished. Mattie really refused to do therapy today, and then called me his boss. I corrected him and told him I am his mother, and as his mother I have to look out for his best interest, even if he perceives what I am asking him to do is not fun. He then proceeded to tell me I was a bad mom. What you need to understand is this whole conversation is happening in the middle of the clinic, where everyone can hear what is going on. I have become so desensitized to discussing sensitive issues in front of people this year, that I really did not care who was listening. But I can assure you I have come a long way, since I would have been mortified by this dialogue in public back in August 2008. I finally told Mattie I wasn't going to argue with him, but if he decided not to do therapy, the only person he was hurting was himself. Anna really worked hard at being flexible and approachable with Mattie. Anna did get Mattie to kick a ball several times today with his right foot, but it was like pulling teeth. After hit the ball several times, he broke down into tears. So needless to say this was a therapy session that was very challenging. Challenging because Mattie wouldn't meet us half way and participate in the process. We shall see what tomorrow holds as we head to the physical therapy clinic, rather the pediatric HEM/ONC clinic for a session. This is one of the many challenges of dealing with a young child with osteosarcoma. It is sometimes hard to rationalize with a seven year old about the importance and nature of physical therapy. All he can think about is pain, being controlled by someone else, and that it isn't fun. An older children may feel this way too, but I think they would also understand the importance of buying into the process.



At 5:30pm, we left the clinic, and Dr. Synder practically walked me to my car. It was the only way I was able to discuss Mattie's blood work and next steps with her. Mattie wouldn't give me a minute in the clinic to myself, and since Jenny and Jessie (Mattie's art therapists) had previous commitments, I was balancing Mattie alone. Dr. Synder landed up helping me with my purse, cleaning things off my face from clinic, and I started laughing. I said to her I must look like I am in need of a lot of help.

So with regard to next steps here is what we know so far. Mattie is headed for an echocardiogram on Thursday morning. We are trying to assess if his heart has really been impacted by chemo, or if over time it has repaired itself. About a month ago, Mattie's echocardiogram indicated a reduced LVEF (Left Ventricle Ejection Fraction - 51%), which in layman terms means that his heart is not pumping with its normal level of pressure. Dr. Synder wants to assess his LVEF this week, and from there will determine whether he will get two more doses of Doxorubicin (one of the chemo drugs he received before). What surprised me is she has tentatively scheduled this two day infusions of Doxorubicin for next Thursday and Friday, but in the clinic. So we wouldn't be doing this as an inpatient in the PICU. Certainly I am thrilled we can go home each night, but a part of me will miss the opportunity to see our HEM/ONC nurses in C52 that we have become so fond of. If Mattie's LVEF remains the same or decreases further, he will be ineligible to receive these two doses of Doxorubicin. So we will know more after Thursday's echocardiogram. Peter and I debated back and forth today about next steps. You need to understand that there are NO next steps, or at least NO known and well researched next steps for a patient like Mattie (Can you believe there is little to no data out there about how to treat a patient who has had osteosarcoma removed from the limbs and then the lungs? What I am saying is there is no research about a maintenance plan or how to treat this horrible disease prophylactically, when there is no evidence of further disease.). He technically has no evidence of disease right now, so there is no trial or drug to ethically give him. However, Dr. Synder is recommending that we scan Mattie every two months rather than every four, and plans on consulting with Dr. Bob to see if he is amenable to having Mattie's previous surgical sites scanned every two months as well. We are still awaiting results from Oncotech, which may enlighten us further about the receptors present on one of Mattie's lung tumors.

We want to thank the Chiaramonte family tonight for a wonderful dinner. Mattie loved the pasta and apple pie. I am happy to report that Mattie is eating a bit better and is drinking milk like it is going out of style, which is excellent. I had several conversations with Ann today, and she is being very proactive to make sure Peter and I celebrate our anniversary next week, as well as my birthday. I remember my friend Lisa wrote me a few weeks ago and reminded me it is important to celebrate my birthday. That Mattie needs to see this normalcy. The way I feel, my birthday could come and go, and it could be any ordinary day. In fact, Mattie was diagnosed two days before my birthday last year, a day I will NEVER forget. However, clearly Ann and several other Team Mattie supporters are focused on making this year a better one for me, and that includes getting together to celebrate my birthday. In a way it is very, very touching that Ann and others care this deeply. I am not used to having so many people caring for me, but I have found that in allowing this to happen I have developed some beautiful friendships.

I end tonight with a message from my friend, Charlie. Charlie wrote, "I am glad you got your break but sorry it wasn't everything you hoped it would be for Mattie or for yourselves. Although it is difficult, I think you are going to have to find a way to make more deposits in your "emotional bank account" even if they are very small ones (i.e. short amounts of time). What you are facing is almost akin to a prison camp situation and is about personal survival until Mattie is really on the path to healing and wellness. You need to work at protecting yourself as well as Mattie since his survival depends on you. I know that Ann and the other members of the Mattie team will understand and do everything they can to support you in this process."

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."