Saturday, June 27, 2009

Saturday, June 27, 2009

Quote of the day: "We must accept finite disappointment, but never lose infinite hope." ~ Martin Luther King Jr.

Peter stayed with Mattie last night, and he told me that Mattie did not go to bed until after 1:30am. Mattie was up and down throughout the night, and fortunately Peter remembered to change Mattie's Fentanyl Pain patch at 2am. This transdermal patch needs to be replaced every 72 hours. I had completely forgotten about it, and thankfully Peter was on top of it. Nothing woke Mattie up this morning, even with me rummaging around through closets in his room and gardeners mowing the lawn in our complex. By 1pm, Peter woke Mattie up and from that point on, Peter kept Mattie busy, entertained, and moving from one activity to the next. I have no doubt after a full day with Mattie, Peter is simply played and wiped out. Mattie received a Lego set from the Page family in the mail, and Mattie was very focused on assembling this coast guard helicopter throughout the day. Thank you!

While Peter was with Mattie, I spent the majority of the day out of the house and with Ann's family. Ann's two daughters, Katie and Abigail, were in a dance recital today, and I had the good fortune to be able to participate in getting them ready and watching the performance. By the time I got to Ann's house, the girls' hair was already styled and their nails were done from the night before. So my sole focus was their makeup. I went to Ann's house with all sorts of make up products because I wasn't sure exactly what colors the girls wanted to wear. But based on their eye and hair colorings, I had a pretty good idea what would work best for them. By the time their make up was done, and they did not need much, they looked stunning. I did not get a picture of Katie and Abigail together, and hopefully if Ann has one, she will send it to me, so I can post it.

Unfortunately you can't see what I mean about Katie since I haven't posted a picture of her, but there was something about her eyes today that captured my attention. Maybe I never spent the time to really look at them, but they are very beautiful and dramatic. Like Marlene Dietrich's (a famous actress from the 30's and 40's) eyes. In a way capturing those eyes today was a special gift, and I am happy I had the opportunity to pause and take notice. I think it speaks to our harried lives, that we rush around from one activity to another sometimes, and yet miss the beauty that is right before our eyes. I snapped two pictures at the recital, and would have taken more, but there was no photography allowed during the performance.

Left: Abigail in her sailor costume. I don't think I have a seen a cuter sailor. Abigail has a wonderful stage presence and her personality simply lights up the stage.

Right: Abigail and Mary (Ann's mother)

I truly enjoyed seeing the children perform today. Abigail and Katie did a great job! However, in addition to the children performing there was a professional children's dance troupe that performed many different pieces. I guess I am a traditionalist at heart. After all, I have been a ballet supporter and have loved this form of expression all my life. Which may explain why I was STUNNED to see the dance moves that these children in the troupe were being asked to perform. Please keep in mind that this dance troupe has won many national awards, so this hip hop style clearly is a legitimate and competitive format. I think the children in the troupe are talented, and have a gift for dancing, but is it appropriate for young children to be wearing very suggestive costumes and to perform such provocative dance moves? I am all for dancing as a form of self expression, but I am saddened that young children are being asked and promoted to perform such lude and very sexual moves. I couldn't move past my feelings today, which made it difficult to enjoy this component of the show.

There are so many wonderful forms of dancing out there for our children to be exposed to first, and part of me couldn't help but feel concerned by what I was seeing. I saw YOUNG children forced to look older through an overwhelming amount of makeup and lack of clothing. To me they looked at least 10 years older than their actual age. Why rush their youth? They have a lifetime to act and look older, and I think any form of dance promoting that versus the beauty of the actual physical expression itself is questionable. I realize I may be in the minority with my viewpoints, but I guess I feel as Mattie's childhood is being striped away from him, I see the need more than ever to preserve this more innocent time in our children's lives.

In honor of the girls' recital today, I wanted to give them a little gift that captured this special day. I put together two cute bags filled with items I thought they would like such as hair bands, lotions, perfume, etc. I was thrilled to see how much Abigail liked this bag and took it with her to the performance. I have always thought that giving a gift is SO much better than receiving one. It gave me great pleasure to see that I made someone happy today.

After the performance, Ann's family and I all went out to lunch together. When lunch was over, we brought Mary (Ann's mom) back to her assisted living facility. While we were in the car Michael (Ann's son) started asking questions about illness, in particular Parkinson's disease. Michael mentioned how cancer and such diseases are one in the same, and they are like having a very bad cold in terms of their level of pain. I agreed with him by saying these illnesses are all awful, but unlike a cold, with some types of cancer and progressive illnesses, the patient isn't going to get better. Michael then said very sincerely that this wasn't going to be the case with Mattie. In essence that Mattie would get better. I told him I really hoped so. But that he made this connection back to Mattie was very touching.

I also had the opportunity to go out later in the day with Ann and Helen. While we were out, I had a moment to talk with Ann, and tell her how important today was for me. I felt like I escaped from my daily world, that I felt included in part of a family, and that in many ways today made me feel alive. It was only through talking with Ann that I realized perhaps I am depressed. Certainly not clinically per se, since I am functioning from my perspective, extremely well on the most challenging of circumstances. But it is true that I can't think of something now that would make me happy, mainly because I live in constant fear about Mattie's health and the sheer exhaustion of taking care of him day in and day out is overwhelming. In any case, this conversation I had with Ann today means more to me than she probably knows, and being a part of this happy occasion today was something I won't forget any time soon.

When I arrived home tonight, after being gone the entire day, Mattie gave me quite a greeting. He basically curled up in my lap for over 30 minutes and he verbalized how much he missed me. I told him that it is nice to hear that he missed me as much as I missed him. It was a touching reunion, and when Mattie looks at me, my heart melts, because I feel guilty for feeling tired, for being fed up, when he is fighting for his life. But I have come to the conclusion that this is part of living with cancer, and I can't apologize for my feelings. They are what they are.

I end tonight with a message from my friend, Charlie. Charlie wrote, "Friday was a day of disappointments. First, having to give up something that you enjoy so much and knowing that for at least the near future, attending the ballet is out of reach. I am sure it hurt to be reminded that not once this year did you get to use your tickets. Then, hoping to have a relaxed afternoon out ended the same way with Mattie needing you and you having to rush home. As it must, everything centers around Mattie and his needs. I am glad you got to go out to Ann's and help the girls get ready for the recital but I can hear the sadness that this is not the way your life is anymore. I hope the recital on Saturday goes well, that you get to attend and perhaps even that Mattie feels up to joining you afterwards."

Friday, June 26, 2009

Friday, June 26, 2009

Quote of the day: "Courage is being scared to death but saddling up anyway." ~ John Wayne

Mattie fell asleep before midnight on Thursday. Another record, I hope this is a trend! However, Mattie had a very restless night of sleep. He was up every two hours moaning in pain and talking in his sleep. By 4am, he needed more pain medication, and clearly because he was so restless he had a hard time waking up this morning.

Before Mattie woke up this morning I received a call from the Kennedy Center for the Performing Arts. Peter and I have been ballet ticket subscribers for 15 years. I believe it is important to support this art form, and it has given me great joy over the years to see different companies from all over the world perform at the Center. Today was the last day to renew my long standing subscription, which included orchestra seats, front and center, just four rows away from the stage. It took us years to get these amazing seats. None the less, today was an end of an era. I broke it to the woman on the phone that I wasn't renewing my subscription because my son had cancer and I couldn't even attend any of the performance this year. By the time I finished with the woman on the phone, she was beside herself and now she too is praying for Mattie. I tell you this story because this is just another clear example of how my life is changing. Slowly one by one the things I loved to do and had time to do, are being removed. This is not a woe is me statement, it is more a statement of fact. A statement of how profound osteosarcoma is on a family. How I wish I could turn back the clock to July 23, 2008, and change the outcome of Mattie's original diagnosis.

Dan, the Georgetown University student helping me out this summer, arrived at noon. Based on how Mattie was feeling today, I had no idea how he was going to do without my presence. But I figured I had to give it a chance. I was determined to get my hair cut and nails done, and I am happy to report I was successful on that front. Though sitting still for me now is dangerous, because my eyes become so heavy and I can literally fall asleep in any position.



At around 3:30pm, I checked in with Dan and things sounded like they were going well, but minutes later Dan called me back and said Mattie wanted me to come home. Dan, of course, is doing the right thing, but I find that I am stressed out and can't plan my days because I never know when Mattie will become upset and need my attention. So part of me was enjoying my time out, and the other part of me was anxious and watching the clock. Not a good feeling! I am sure things will get better as Mattie adjusts to being home again, but I am not sure when things will stabilize.



Mattie and Dan recreated Gary, the snail alarm clock, from the Sponge Bob series. They did this on saran wrap. You can see the creation that is now hanging on his easel. Mattie was very proud of his art work today and couldn't wait to show me or tell Peter about it.



When I arrived home, Mattie landed up having a stomach ache, was nauseous, and in pain. So there were multiple things to contend with. Once we said good-bye to Dan, I sat with Mattie and he pulled out his Easter baskets and we started playing. Naturally Mattie has plastic bugs in the Easter eggs! The ironic part is while playing with Mattie, and mind you I was sitting up on the floor, I must have fallen asleep slightly and landed up talking about broccoli. Mattie was laughing hysterically at me and I heard him saying, "wake up Mommy, you are talking nonsense." Got to love it, no?


We played a while and then Mattie was getting tired. At this point the Kytril (an anti-emetic) was taking affect, and Mattie was hungry. He ate more today than yesterday, but his appetite is definitely not back to normal. But I fight one battle at a time.




This evening we had a lovely dinner thanks to Dawnee. Thank you Dawnee for ordering some of our favorites from Pappa Razzi. The special brownies were sinful. Thank you! As always we appreciate your continued support and generosity!



I went over to Ann's house tonight to start the dance recital preparations (Ann's daughters are performing on Saturday). I did the nails of the girls, because I thought hair, nails, and makeup in the morning would be too difficult to manage and very hard on the girls. Ann's Aunt Helen and cousin, JP, are visiting from Boston for the recital. It was wonderful to spend time in a house that ISN'T cluttered with things, and to see normal and everyday activities being performed. It was nice to see kids being kids, and to be a part of the whole equation. Something I long for. I long for the days of simple problems, now that I know what a real problem is, not much ruffles my feathers anymore. Ann and I spoke about her parents, and the importance of her role as their caregiver. But one thing was a realization to me, who will Peter and I grow old with, if not with Mattie? Who will look out for us as we age? I don't like to think in these terms, but when caring for someone with a life threatening illness, occasionally reality sets in.

Mattie was invited to attend the recital tomorrow, but he has chosen not to go. It is my hope that he will decide to join us afterward at Ann's house, but I have learned not to force things on Mattie, and when he feels more emotionally ready, he will do it. Or at least that is my hope based on previous experiences this year.

I would like to end tonight's posting by sharing three messages with you. The first one is from my friend, Charlie. Charlie wrote, "Reading Thursday's blog I had the distinct impression of someone hunkered down in a bomb shelter. You are surviving but all the joy is gone and all your attention is focused on when the next explosion will occur. I hope that Mattie's medication helps him because this situation is not good for him or for you. I am grateful to the people who did mitzvahs (good deeds) for Mattie and you yesterday (tickets, parking, acts of kindness) and sorry for the ones who behaved in a less appropriate way. Illness, particularly one that can be fatal, is very difficult for many people in our society to deal with. We hide the ill and the less than perfect away and unless they are members of our circle, many people do not have any contact with those who are fighting to survive. As a result, they have no idea how to respond or that their attentions are unwelcome or inappropriate. I do not believe they do it to be unkind but like very small children, they are unschooled in appropriate ways of behaving and fearful of the unknown. I am sorry that the outing was not what you hoped it would be, but as you said, even prior to the illness, going to baseball games was not Mattie's forte. Maybe once Mattie's medications begin taking effect you can come up with something that is better suited to his ability and comfort level."


The second message if from my friend, Susan S. Susan wrote, "I was watching the special on Farrah Fawcett this morning. Barbara Walters asked her physician, Dr. Lawrence Piro, what he thought the message Farrah would want to relay to the world and this is what he said: 'Be as fearless as you can be, don’t be intimidated by fear, keep marching forward, do what you think is right, fight for what you want to fight for whether you are winning the battle or not….' I send this to you because this sounds so much like you and how you are living your life."




The third message is also from Susan S. Susan wrote this to me last night, when I was in a foul mood. I read her fabricated article, and it got me laughing! Thank you Susan for this good chuckle. Susan wrote, "I read this article in the NY times today and thought you might find it interesting:(AP) Georgetown University Medical Center is unveiling their new medical model this week. Entitled the "Sardi Phenomenon" it has put a whole new spin on how to practice medicine. The focus is on "convenient care for the patients." An entirely new concept in the field of medicine. Named for Dr. Victoria Sardi who was the impetus in helping hospital administrators realize the need for convenient care for the patients rather than care centered on the needs of the medical staff. Dr. Sardi, with a background in mental health, realized first hand how patients' recovery is severely impacted by the lack of sensitivity to the situation of the patient."

Thursday, June 25, 2009

Thursday, June 25, 2009

Quote of the day: "Faith is taking the first step even when you don't see the whole staircase." ~Martin Luther King

Wednesday night Mattie fell asleep at 10pm. I couldn't believe it. This was an absolute first, but it spoke to how tired Mattie really is. I was afraid though that he would wake up at some point during the night, which would make sense since he receives 1000ml of IV fluids over night, but he never woke up. Instead I woke him up at 7am to use the bathroom, and then he went back to sleep until I woke him up after 11am. It took him a while to fully wake up. Mattie's uncle, aunt, and cousins were visiting from Boston. They wanted to come and visit with him today before returning home, but Mattie was closed off to this idea. So I would say Mattie is experiencing signs of depression again. He is remote, closed off to people, isn't eating, and stares off into space. It is actually a very devastating picture to watch, and in some respects the mental health components of cancer are almost as bad at the physical disease itself. Remember I see this picture for many hours a day, and live it. By the end of today, I had absorbed so much of Mattie's attitude and mood, that I too felt depressed.

At around noon today, Dan (the college student from Georgetown University) came over to spend a couple of hours with Mattie. Mattie said he was okay with this, but I have learned today he will say he is okay one minute and then the reality comes out hours later. Fortunately when I left Mattie, I headed first to the pharmacy to pick up his medications (if I waited later in the day, it would have never happened). As it turns out I am livid because the pharmacy gave me the wrong dosage of Mattie's anxiety medication. They actually doubled the concentration of what he is supposed to take, and I am so happy that I always check before administering any medication. So I had to contact Mattie's doctor and of course find my way back to the pharmacy to address this issue.

I went to visit Ann today and we had lunch together at her house and we discussed Katie's and Abigail's dance recital on Saturday. Her daughters are performing on Saturday and I have offered to help her get the girls ready. It is funny, doing up hair and make up was something I always did while growing up, but of course raising a boy, I don't have these same opportunities any more. So in a way, I am looking forward to seeing and feeling this excitement again. However, while at Ann's house, Dan called me. When I picked up the phone, Mattie was on the other end, and in a very pathetic voice asked me to come home. He missed me, and I could tell he was in a funk. I had Mattie put Dan back on the phone because I just wanted to make sure there was not an emergency. Needless to say, I can move pretty quickly by car from Ann's house back to mine.

When I got back home, Mattie was sitting on the floor face down. I could tell he was experiencing pain, so before we said good-bye to Dan, I administered pain medication to Mattie. I then prepared him some food and sat with him. Because of the funk he was in, I tried to assess if he really wanted to go to the baseball game tonight. He claimed that he did! So when Peter got home we headed to National's Stadium.

Before I tell you about this disaster, I do want to acknowledge the SIX acts of kindness we experienced tonight. The first act is that the Ferris family gave us eight tickets to the baseball game tonight. Thank you Tad and Junko for your generosity, for your incredible support, and for giving us this opportunity! I had a great time chatting with Tad tonight who was at the game with his cousins. The second act came from the Keefe family. Last night the Keefe's gave us tickets to the game, and when Peter contacted the Keefe's today to thank them, one thing led to another and Peter Keefe arranged for us to get disabled parking comped tonight, and also arranged for our tickets to be switched to a section that would accommodate Mattie's wheelchair. We thank the Keefe's yet again for their amazing support! The third act was when we arrived at the park, a young fellow came up to Mattie and gave him a baseball he caught tonight during batting practice. I thought that was very thoughtful! The fourth act of kindness occurred at the Stadium's team shop. An employee came up to Mattie and gave him a bobble head pin. The fifth act of kindness was that we were greeted by a man dressed in Army attire. He stopped Mattie and gave him an Army shirt and cap that said, "Army Strong." He told Mattie that he had to STAY ARMY STRONG to fight his illness. I was deeply touched, and he shook my hand and Peter's. I almost felt like on some level he really got what we are going through. The sixth act of kindness came from Ann's daughter, Abigail. Despite Mattie's foul mood, and being despondent, she did not give up. She stayed by Mattie's side, even when Mattie insisted on being pushed around the park during the game. Mattie did not want to watch the game at all, but instead they went to the Build a Bear store at the park and came back with a stuffed dog named Copper. I am not sure what I was more upset about. The fact that Mattie claimed to want to go to the game, but REALLY did not, or that he practically bought every item at the park. Items that I felt he did not need. I realize in the grand scheme of things this is the least of my problems, but we are packed to the gills at home, and if these items brought him joy well then great, but like all material things they only bring short term happiness. Mattie wasn't in the picture mood, but I did snap a few that I wanted to share with you.

Left: Vicki, Mattie, and Peter as we entered the ball park.

Right: I was fascinated by this owl that this man had on his arm, so I couldn't help myself, I had to capture a picture of this amazing bird.

Left: A picture of Copper, the animal Mattie made today at Build a Bear.

Right: I tried to capture the intensity of the stadium. It was FILLED to capacity! I almost felt like I was in Boston, since I was surrounded by Red Sox fans.

By 8pm, Mattie had it. He wanted to go home. He seemed miserable and unhappy to be at the ballpark. I was saddened for Peter, because this was supposed to be his night out to watch something he loves. I should have never let Mattie talk me into letting him go, because even under the best of circumstance (pre-cancer) he never liked going to a baseball game. As we were leaving the ballpark, I landed up screaming at Peter. Not because I was mad at him, but I was frustrated. Not that Peter has a break during the day because he is working. But at least he gets out of the house and gets a break from ILLNESS and Mattie's intense moods. With that said, I do acknowledge that in the 11 months I have spent in the PICU, I have yet to see a more involved dad than Peter. Peter spends his days working, and his nights working with Mattie. There is no break for him either, I realize, but clearly Peter and I have different stresses, and I must admit at times I am insensitive to them.

When we got home tonight, Mattie and I were both in a bad place. However, I gave him more pain medication and then we helped him relax on the couch. I made dinner for Peter and I and as I head into Friday, a day where I was supposed to go and get a hair cut and my nails done, I am in a panic that Mattie won't make it without me. This creates a level of anxiety I could do without. But what other alternative do I have? I sometimes need a break, and he needs to start letting others back in his life.

As I looked around the Stadium tonight and saw healthy children running around, I wanted to internally scream. In addition, my running joke with Peter is I want a hand counter. If someone has one for me to borrow, please give it to Ann. I plan on doing my own informal survey of how many people look at Mattie while we are outside in public. I am developing the survey questions in my head, and it should produce some interesting informal data. I am SO sick of the stares and looks. Like what, I brought on the cancer?! I know that others with cancer can really relate to what I am saying, and I will be curious if my counter clicks decrease in number once Mattie gets his hair and coloring back in his face! The question is what sets off people's level of discomfort (or need to stare), looking at cancer or physical disability or BOTH? Speaking of also being incensed, I was listening to the radio today (something I no longer do when I am with Mattie, so today was a luxury), and the hosts were raffling off Rascal Flatts tickets to benefit St. Jude's Children's hospital. As listeners were calling in and bidding on the tickets, I found it fascinating the justification for why they were bidding over $3000 for these tickets. I heard every possible reason, except the one that really mattered from my perspective, which was to support children and their families dealing with catastrophic illnesses. I wanted to call in, but I figured I had better fish to fry and if I wasn't living Mattie's illness, MAYBE I too would have provided the same justifications that the listeners used.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "When I read the blog I sometimes wonder if life will ever return to normal for you even in the little things. Just reading about what you have to accomplish in a day makes me exhausted, how much more so when you do it day in and day out, starting out sleep deprived and finishing in the wee hours of the morning because that's the schedule Mattie is currently on. Now that you are home I hope you can start to shift Mattie toward more normal hours and that as he feels better he will be more open to visits so that you and he don't remain so isolated from friends and family. I was sorry to read that Mattie was not open to visiting the carnival Wednesday as it sounded like a lot of fun but I am glad that you got out to enjoy some fresh air and company even if only for a little while. I really hope that you can find your way into some sort of routine so that both you and Peter can get some much needed rest; you both amaze me with your ability to function and do it all (mentor, work, parent, advocate) under the most impossible circumstances."

Wednesday, June 24, 2009

Wednesday, June 24, 2009

Quote of the day: "A friend is one to whom one can pour out all the contents of one's heart, chaff and grain together, knowing that the gentlest of hands will take and sift it, keeping what is worth keeping, and, with the breath of kindness, blow the rest away." ~ Arabian Proverb

Since Mattie slept for a good chunk of the day on Tuesday, it was no surprise that he did not fall asleep last night until 3am! By this point, Peter and I were beyond exhaustion. Peter helped me pack up the room, so that we could be discharged today without much hassle. Peter carried most of our room items to his car last night, so that I only had to worry about Mattie and a few bags today. Even though I had little content to worry about, it still was enough to stress me out. At 2:30am, Peter went home to try to get some sleep in order to function on conference calls today. I am not sure how he does it, because if I stop moving, I literally fall asleep!

Mattie had a hard time waking up this morning. Despite going to bed at 3am, I woke up at 7am, because the IV pump was beeping and the room traffic started. I always wonder why Mattie isn't tired and I am! Besides our huge age difference which could explain a lot, I realize that he gets much more sleep than I do because I spend four to five hours in the morning running interference so he can sleep! This activity alone is exhausting. While he was sleeping this morning, Jenny and Jessie (Mattie's art therapists) came by to let me know that they wanted to take Mattie to the Lombardi Center carnival today. It was outside, and it looked festive. In fact, Jenny and Jessie came by several times to check to see if Mattie was up and wanted to go. They really made us feel included, which I so appreciate. In addition, I had the opportunity to talk with Peggy today, she is the director of respiratory therapy. I was able to give her some constructive feedback about the problems we experienced. Most of my issues were with the process of how the therapy was conducted, but also with the lack of creativity on behalf of the therapists. These folks couldn't move beyond using traditional breathing exercises with Mattie. They never thought about using a harmonica, pinwheels, party blowers, bubbles, and of course Brenna's Sponge Bob boat race. Why do these novel ideas have to come from Linda and Brenna, a nurse? I think that says volumes. Peggy got my point immediately and promises me that she will ask Linda to do an inservice with her therapists. I certainly hope so, but that is one more thing for Linda to add to her plate, but it will be worth it if another child has a better experience in the future.

At around noon, Jenny and Jessie came back upstairs to the PICU to try to bring Mattie to the carnival. But he did not want to go, and in fact, wouldn't even open his eyes, but clearly was conscious during this dialogue. Jenny gave me the wonderful opportunity to go to the carnival to get Ben and Jerry's ice cream, specifically a flavor entitled, Chocolate Therapy! Jenny stayed with Mattie for over 30 minutes. I had more fun in those 30 minutes than I had for an entire two weeks! I laughed, I talked with other parents, and of course connected with some of my favorite people, Brandon, Toni (Brandon's mom), and Jocelyn.

At the carnival, Jocelyn helped Brandon achieve his goal. The goal was to cut his hair, which hasn't been cut for at least 8 months, when his chemo was completed. Brandon told Mattie yesterday that he wanted to get his hair cut to look just like Mattie. If that not touching or what? But Brandon did not just say it, he DID it and Jocelyn helped. I told Jocelyn that if law school doesn't work out, she has another budding career in the making. She did a great job with Brandon's hair and you have to understand that Brandon had hair on his head for 5 people. It is very THICK and has a beautiful wave to it. For me the hair cutting was the highlight of the carnival, and I captured pictures of the stages of cutting. Jocelyn and Brandon are good friends of Mattie's and super supporters. I witnessed and FELT the beauty of a cancer community today. This is something that I normally shy away from, because I live cancer, I don't normally want to socialize in this arena too. But today was different. I credit it to Jocelyn and Brandon's spirit and energy!

Left: The hair cutting process beginning. Can you see the depths of Brandon's hair?!

Right: Brandon is really there under all that hair!

Left: Jey (Mattie's "big brother") came by the carnival and watched the process. Jey is good buddies with Brandon too, and Jey has a way on taking all his "kids" under his wing. He looks out for all of us, and I appreciate Jey's constant concern and support! He is our favorite CT scan tech, and really understands and deeply feels Mattie's illness. Pictured: Brandon, Jocelyn, and Jey. Are you getting the feeling for why it is hard to say good-bye today!?

Right: Have you ever seen two cuter faces?

I have also had the wonderful opportunity to get to know another wonderful Osteo family. We met in clinic and we happened to be in the PICU together this week. Justin is another special individual, and though a teen, I find it fascinating that he has the same physique as Mattie. Tall and slender. But Justin is such a refined and special individual, who tells me that Mattie's battle with osteosarcoma is an inspiration to him. When he thinks he is having a hard day, he just thinks of Mattie, and it helps to change his perspective. I thought that comment was SO mature and thoughtful, because in all reality Justin shouldn't have to deal with any aspect of this devastating disease either.

This afternoon, Junko came by the hospital and brought us a wonderful lunch and gave Mattie some great gifts. But Mattie was in a funk and a terrible mood, that continued for quite a number of hours while at home. Junko helped me pack up the room and carried all my items down to her car, and brought them home for me. So that I only had to worry about Mattie. That was a great help! Thank you Junko for all your efforts and patience today.

Though Dr. Gonzalez joked with Mattie that she did not want to release Mattie today because she was going to miss him, I think a part of her was serious. Mattie has seen Dr. Gonzalez before in clinic, but this surgery experience bonded them together. Mattie, myself, and Dr. Gonzalez have similar personalities, we are all fiery, so we relate very well together. Dr. Gonzalez was a great attending to have on call during Mattie's surgery because she doesn't take no for an answer. If something isn't right, she is on top of it! But we all agreed that Mattie really needed to get out of the hospital today. It was greatly affecting his mood. It is 10:30pm as I write this, and Peter is at the Red Sox game with his family thanks to the generous gift of EXCELLENT tickets with other perks (like parking and food) from the Keefe Family! I am not sure how we can ever thank you, because your whole family has been SO supportive of us this year. To put things into context for our readers, Tim Keefe was in Mattie's kindergarten class last year. Thank you Debbie and Peter for this special gift. My Peter is emailing me back and forth tonight and is having a wonderful time, of course with the Red Sox winning, this definitely lightens his mood.

Mattie and I had a busy afternoon of PLAYING. We did some computer time, read books, had races between a remote control tarantula and car (the car won hands down!), and of course no day is complete without water play. You can see in the picture that Mattie inflated an entire beach ball on his OWN! I would say his lungs are working quite well, wouldn't you? Hard to believe he had major surgery last week on his lungs. But I was thrilled to see him do this, but I am reminded of his weakened condition, because he still needs to rest.

I want to thank the Tilch family for a wonderful dinner and for supporting us on our first night home after surgery! It means a great deal! I would like to end tonight's posting with three messages I received today. The first one is from my friend, Charlie. Charlie wrote, "Another tough day. Sometimes I wonder if it is easier at home or at the hospital and I've come to the conclusion that they are both difficult but in different ways. I am glad that you had a good number of visitors as it seems you were a little less isolated yesterday than you have been recently. I am also happy that Mattie seems to be showing some willingness to do therapy as we all know how critical that will be to his recovery. I do think your idea of having him be an inpatient for therapy and around a lot of other children is definitely worth exploring; Mattie seems to like challenges and games and that might be the right setting for him. Being around other children who are also having difficulties may help him feel a little less self conscious as well. I loved hearing about the snake and Mattie's role as a snake charmer; this sounds like a good addition to the bag of tricks for respiratory therapy. Thank you to the ticket sellers and those who were able to attend the game on behalf of the fund raising. I know that seeing the signs and the pictures of supporting friends means so much to you!"

The second message is from my good friend, Amany. Amany wrote, "On another note, I cried when I read your article today. It was a mixture of sadness and intense pride--to read how you have coped with this and how you have drawn on all of your training and expertise, but more importantly, how you've reached down deep within and tapped into strength and a reserve that I'm sure you didn't know you had, filled my heart and made me realize all over again how proud I am of you. I'm more convinced than ever that your ability to maintain the blog and write the articles in your sleep-deprived and stressed state means that this is coming from your soul and your heart and not necessarily the mind. The mind tires and cognitive functions become impaired (our ability to focus, concentrate and even be coherent is compromised), but the blog shows no evidence of that. It's clear, the blog is coming from somewhere deep within--that's why it has drawn so many of us in and we continue to go back for more. On some level, since it's coming from a deeper place, it speaks to everyone in a profound way and somehow feeds a need for connection, humanity and hope. If we could bottle your spirit and sell it, it would be a gold mine!"

The last message is from my lifetime friend's, Karen, mom. Mrs. Fischer wrote, "I had to let you know that I read your article and was struck with the beautiful and highly professional way you expressed yourself. You managed to summarize what you and your family have been going through -- and convey everything so simply -- including some sensitivity training to the readers who are mental health clinicians. That you are able to do this midst all of the heartbreak, turmoil and exhaustion is truly amazing. It speaks volumes about your brains, your heart and your inner strength. Wish I could be there to give you a hand...and a hug."

Tuesday, June 23, 2009

Tuesday, June 23, 2009 -- We want to thank the over 130 people who bought tickets to the Red Sox/Nats baseball game tonight in support of the Mattie Fund. This was yet another successful fundraiser. We thank the Gehrs' family for securing all these tickets for us and of course Ann H., Carolyn C., and Peter L. for doing an outstanding job selling them!

Quote of the day: "The manner in which one endures what must be endured is more important than the thing that must be endured." ~ Dean Gooderham Acheson

Before I begin tonight's posting, I wanted to share a picture I received this morning from the Doane family (who we met through Resurrection Children's Center). Emily and Abby are donning their Mattie March shirts and I am happy to report that these lovely girls are big supporters of Mattie. Also featured in the picture is Max, their dog! Thanks Mary for starting my day with this adorable picture.

Mattie had another late night. However, at 12:30am, he was demanding vanilla frosted cupcakes. In fact, he wanted me to drive home and BAKE them! Clearly that wasn't going to happen. Peter and I decided we would try the vending machines in the hospital, because at that hour nothing is open on campus. Also we weren't about to hop in a car and shop for these treats. So while Peter was combing the hospital hallways looking for vending machines, I was rationalizing with Mattie about how such requests at this late hour are very challenging, especially when we are living in a hospital. When Peter came back into the room, Mattie was very grateful, and was introduced to his first Twinkie. Thankfully Ann brought cupcakes for Mattie today, so I won't have to worry about traversing the hospital tonight!

Sarah Marshall was our nurse last night. We have been very lucky to have her three nights in a row. I think she can tell we are exhausted, and instead of collecting blood at 4am, she waited until 6am. The irony is she is so quiet, that I did not hear her at all! What I am noticing though is that all the HEM/ONC nurses are stopping by to say hi and check in on us. They truly have connected with our family and I think Mattie feels that he is their FAVORITE patient. I am certain that isn't true, but it does speak volumes about how special they make their patients feel! When you have to live with osteosarcoma, I welcome anyone who wants to make Mattie feel important and happy!

When Mattie woke up this morning he wasn't in the best of moods. In fact, Kathleen (who some of you will recall made a clay plaque for an art display at the hospital which read, "I wish for a Mattie Miracle") was Mattie's nurse today and she tried her hardest to make Mattie smile. She even tried tickling him. However, she got Mattie to smile by putting on a very serious face and Mattie took one look at her sweet but serious face, and laughed! I took some pictures of this dynamic later on today. In fact, Kathleen joked with Mattie. She said there is absolutely NO smiling in the hospital. In fact, she said if he smiled that meant it was time for Mattie to go home.

Before Mattie woke up this morning, Jocelyn came by to visit Mattie. Some of you may recall that Jocelyn is a young adult with Osteosarcoma. You may have even met Jocelyn at Mattie's walk. Jocelyn is a wonderful role model for Mattie and she came bearing gifts today. She brought Mattie Sponge Bob party blowers and a beautiful albino python stuffed animal. A replica of the same snake that came to Mattie's birthday party a few weeks ago. Mattie named his stuffed animal, Sunshine, in honor of the real "Sunshine" who entertained the kids at Mattie's birthday party! Sunshine happens to be beautiful and cuddly! That is saying a lot, because I do NOT like snakes. It was lovely to see Jocelyn and I so appreciated the lovely gift her mom gave me. I am touched that Jocelyn's family reads Mattie's blog, and were so thoughtful to think of us this week! Thanks Jocelyn for the visit, it meant a lot to me, and Mattie LOVES Sunshine.

Mattie received MTP-PE today at around 10am. It was my hope that Mattie would get this out of the way early in the day, so that he would have a productive afternoon. I really should know better! Mattie had a reaction to MTP, but it wasn't until almost four hours later. Mattie started by becoming quiet and then cold, and while Dr. Gonzalez was examining him, he literally just shut down and went to sleep. At 7pm, and he was still sleeping. So God help me tonight, he will be up ALL night.

Right before he fell asleep, Ann and her son, Michael came by to visit Mattie. Michael was a very good buddy to Mattie today and tried to help him and encourage him in every way. It is so touching to see this unfold naturally, because clearly one of my greatest fears is that kids won't accept Mattie. Michael helped Mattie in physical therapy as well. Anna, Mattie's physical therapist, came by for a session. The therapy goal was to get Mattie to stand and to also put pressure on both feet. Anna came armed with whoopie cushions in hopes that the sound would inspire the energy and focus of a seven year old boy. It certainly did for a while, and Mattie was somewhat engaged, but clearly you could tell Mattie wasn't himself. He became very quiet and was just staring at us. When I asked him what was wrong, he said he was nauseous. But in reality it was probably the start of a MTP reaction.

Left: Anna and Michael cheering Mattie on as he stomped on the whoopie cushions. I found it fascinating how Michael learned the names of Mattie's arms and legs instantaneously, whereas, I still get confused on a good day.

Right: Mattie sleeping while having a MTP reaction. Please note, that Sunshine kept Mattie company throughout the entire process!

As Mattie was falling asleep, we had a lovely visit from Brandon (Mattie's big buddy) and his mom, Toni. Brandon had a clinic appointment, and it was so nice of them to stop by before heading home. Toni gave Mattie some wonderful gifts that I know Mattie will enjoy later tonight when he wakes up! Mattie was falling asleep to ABBA music and even Brandon got into it and was singing. It reminded me of old times, when Mattie was doing physical therapy in the hallways and Brandon came along for moral support. In fact, I don't think I will ever be able to separate ABBA music from our time in the hospital. It seems to have brought such life and fun into the whole treatment process, and Lord knows these fun moments are like snapshots that are engraved in my mind. Thanks Brandon and Toni for visiting.

As Mattie rested for most of the day, I tried to stay busy, but then gave up. I closed my eyes for about 30 minutes, but resting in the PICU isn't easy for me. When I woke up, Grace (a friend and RCC mom) visited and brought us dinner. Thank you Grace for such a lovely and generous dinner. Thank you also for all the wonderful music instruments and gifts you brought Mattie. You are way too kind and thoughtful. I loved the chat.

Tonight, I said goodbye to Kathleen, one of Mattie's HEM/ONC nurses. I have a feeling we will see her again, when Mattie has more chemotherapy, but none the less, the finality of our leaving hit me. On one hand I am happy that we are headed home, and on the other hand I am saddened by it. These nurses have become my friends and family this year. Having moved several times in my life, I also know that once you leave a place, the dynamics of the relationships you once had change. Regardless, I will always have a fond spot in my heart for the nurses in C52. They have taken excellent care of my baby, and for that I am forever grateful!

This evening, Brenna (the amazing PICU nurse who designed the Sponge Bob Lake respiratory exercise) came by to visit Mattie. She told him a neat story (well neat in Mattie's terms) about a house she knows that is infested with cockroaches (not hers of course!), Mattie was glued to this story and thought that was incredibly neat! I am so happy I had a chance to say good bye and thank you to Brenna. She is a special person, who took a personal interest in Mattie, and for that I shall never forget her skills and various acts of kindness.

Before Brenna left for the evening, I was able to snap a picture of her with Melba and Janelle, Mattie's wonderful HEM/ONC nurses tonight. What a special threesome! We also had a visit from Tamra and her daughter, Louise tonight. Tamra has become a friend and is a fellow SSSAS mom. They brought Mattie some wonderful fourth of July gifts, two of which were like Chinese lanterns with the fourth of July theme on them. We used the lanterns tonight to hide Sunshine the snake. When the respiratory therapist came in this evening, and I gave Mattie the flute to play, I held the silk screen lantern in my hand, and while he was blowing notes, slowly the snake emerged from the lantern. The therapist and nurses thought this was actually hysterical and now Mattie is known as the "snake charmer!" Thank you Tamra and Louise for the gifts and lovely visit!

Mattie and I played for quite some time this evening. We worked on the computer, we played with cars, and with Sunshine and a dinosaur, that came out of the Happy Meal Ann brought Mattie today. When Peter arrived at the hospital, Mattie was thrilled to see him. Peter bestowed many wonderful baseball gifts on him. Peter said the Mattie Fundraiser was wonderful tonight and he said it was so touching and empowering to be surrounded by our Mattie supporters. I wish I could have experienced it, but despite not being there, I just want all of you in attendance to know how grateful we are! Peter told me that during the fifth inning, on the National's score board, there was a call out to Team Mattie! How lovely!

Left: Melba, Brenna, and Janelle!

Right: A sign that the Bowers held up in the stands at the National's Stadium tonight!

Left: A picture of Mattie opening up his game day gifts! We are now fully loaded with National's merchandise! Mattie was very happy.

Right: Ann and Catherine (a friend and RCC mom) at Mattie's fundraiser at National's Stadium posing with a LARGE Abe Lincoln.

Left: Team Mattie within the stands!

Right: Two Die Hard Sox fans (Ann's dad, Sully and Peter!)

I would like to share a message from my friend, Charlie. Charlie wrote, "Monday was clearly another difficult day. I envision you as a runner doing not a marathon but a triathlon; you have had to deal with so many different things along the way. You do everything you possibly can but there is a limit to both physical and emotional strength. I admire what you do as a parent, caretaker and advocate but it seems that any time you collapse and Mattie is still awake you feel guilty about it. If you were advising someone else who was a caretaker of a child in Mattie's situation you would be much kinder in your evaluation of that person than you are to yourself. You don't rest when Mattie does; you are up and researching or coordinating his care early in the morning while he is still sleeping so it is virtually impossible for you to be alert into the wee hours of the morning. I know all that you do is necessary for Mattie's care and well being. As a result, it is really difficult to find time/space for rest and self care, but the thing you can control is your evaluation of your "performance". Those of us who have a little more objectivity would give you a score of 11 on a scale of 1-10. If you can't do something nice for yourself today, try to give yourself a well deserved compliment and know it is echoed by all of us reading the blog."

I end tonight's posting with the article I wrote for The Advocate (a publication of the American Mental Health Counselors Association). Some of you asked me to post this, and because you asked, here it is. Writing this article was bittersweet for me. Mainly because I worked very hard to be elected to such a National position, and yet when such an opportunity presented itself, life threw me an unexpected tragedy. This article was my last column as President of the Association.

The Last Word

Son’s Cancer Alters My Life; Illuminates How Physical Disease Affects Families

By Victoria A. Sardi, PhD, LPC
AMHCA President, 2008–09

Since this is my last month as AMHCA president, I want to take this opportunity to thank you for entrusting me with the leadership and direction of the association this year. It has been an honor to serve in this role, and I have been truly fortunate to work with such talented board members, committee chairs, members, and of course the AMHCA staff. Together we have delivered many wonderful resources to members, such as connecting regions through an online networking system called Collective X.

When I was elected president for this year, I was motivated, focused, and determined to accomplish certain tasks and goals. However, after our 2008 conference in San Diego, my life changed dramatically, and because of this, I have not been able to achieve my goals. This year has been an eye-opening journey, which has forced me to reprioritize my life and examine what is truly important.

I feel compelled to share my story with you so that as mental health counselors, you may understand the stresses of living with cancer, a family disease. On July 23, 2008, I took my 6-year-old son to the pediatrician because he was complaining of arm pain. I assumed he had either twisted or pulled something in his arm during tennis camp, but an X-ray revealed something much more ominous. Mattie, my son, had a large tumor in his right arm and was diagnosed with osteosarcoma, a type of rare bone cancer. The nightmare did not end there. We learned that Mattie had four tumors in his extremities, and was given the rare diagnosis of multifocal synchronous osteosarcoma. Two of the tumors were in the upper portions of the right and left humerus (the bone that connects the shoulder to the lower arm bones), the third tumor was right near the wrist, and a fourth tumor was just above his knee joint.

Although commonly found in teens and adults, this type of bone cancer is rarely found in six year olds. Mattie’s case is particularly unusual, because most osteosarcoma patients do not present with multiple tumors at one time. Mattie’s doctor told us that one case a year in the entire world like his is a lot. So there is very little research out there to guide us on Mattie’s treatment. In fact, when my husband and I went to Memorial Sloan Kettering in New York to consult with a leading oncologist there, his perspective was that since no children like Mattie have been known to survive, we should opt for palliative care. Needless to say, we were devastated to hear this news. Fortunately, Mattie is being treated at the Lombardi Cancer Center at Georgetown University Hospital, and his doctors embrace our need to fight this horrible disease and support our aggressive approach to treatment.

Most osteosarcomas are treated with a combination of chemotherapy drugs and surgery to remove the tumor and a margin of the healthy tissue around the cancer. On Aug. 7, Mattie began an intense regimen of chemotherapy. His body has been exposed to five very toxic drugs (Doxorubicin, Cisplatin, high-dose Methotrexate, Ifosfamide, and Etopocide) as well as an experimental drug, MTP-PE. Mattie has undergone 10 months of chemotherapy and two major surgeries, where four bones were removed from his body and replaced either with expandable prosthetics or a bone graft.

In addition to fighting cancer, Mattie has also become profoundly disabled from the surgeries. He is still unable to walk or do any activities of daily living without my support. He is unable to attend school this year, and because of his compromised immunity from the chemotherapy, he has had limited play dates. His world has been transformed and so has the world for my husband and myself. I am unable to work outside our home, and instead I am a full-time caregiver, teacher, playmate, and parent to my son, 24 hours a day, seven days a week. Over the last 10 months, Mattie and I spent more days and nights in the hospital than we did in our own home, so much so that our nurses have become an integral part of our family. I have the utmost respect for oncology nurses, and without their support and the support of our communities this would have been a very devastating year.

I tell you this because I want to impress upon you that cancer is not only a physical disease, but also a disease that causes very real and overwhelming mental health issues for the patient and the patient’s family. Mattie has experienced fear, depression, anxiety, and medical PTSD. Certainly these are understandable mental health reactions to the trauma of living in a hospital, losing your freedom to walk and use your arms, having toxic chemicals coursing through your veins, and living through several major surgeries. However, my husband and I have also had to deal with our own emotional and mental health concerns associated with Mattie’s illness. It is hard for us to accept that our healthy son is now so sick, it is hard to see him going through such intensive chemotherapy, and most of all it is hard to imagine our future without Mattie.

Mattie’s prognosis is poor, but despite this, we continue to hope and to remain strong. As our friends tell us all the time, “there has to be someone with multifocal synchronous osteosarcoma who survives, so why can’t it be Mattie?”

Mattie’s last round of chemotherapy was during the week of May 11. However, like other cancers, osteosarcomas can spread beyond the bone into nearby tissues, such as the lungs. Last December, we learned that Mattie has identifiable tumors in his lungs. So this month, on June 15, he is scheduled for his third major surgery, in which a sternotomy will be performed to remove these tumors (or in other words, bone cancer that has metastasized to the lung).

To keep our family and friends updated on Mattie’s treatment, my husband designed a blog site, which is now copyrighted through the Library of Congress. Each night I write about our day together. Since October, we have had more than 64,000 visits to our website, and it is through the blog that we continue to educate others about osteosarcoma and the impact it has on a child and his family.

In addition, because of our daily stories reported on the blog, we have seen something beautiful unfold. These stories and writings have somehow connected our multiple communities, and we have seen what wonderful things can arise when people work together as a united force. Our communities came together on May 9, and hosted an Osteosarcoma Walk in Mattie’s honor. More than 500 people attended this walk and it was a very successful fundraising event. I am happy to report that the counseling community was well represented at the Walk, and we were fortunate to have American Counseling Association Executive Director Richard Yep and American School Counselor Association Executive Director Richard Wong, EdD, in attendance.

I am proud to be a mental health counselor, and I have used my skills in ways this year that were once unimaginable to me. I think that my training and education has not only helped me this year, but has served my son well. I have become a strong advocate for Mattie’s medical care, and I have used my skills to challenge doctors, hospital administrators, and the healthcare process. I have also tried my best in this process to help other family members traverse this cancer journey. If you would like to learn more about Mattie and my family’s daily battle with Osteosarcoma, I invite you to our blog: http://www.mattiebear.blogspot.com/.

Thank you again for the privilege of serving as your president this year, and a special thanks to those of whom have supported me with calls, emails, notes and visits this year.

Monday, June 22, 2009

Monday, June 22, 2009

Quote of the day: "The world talks to the mind. Parents speak more intimately -- they talk to the heart." ~ Hain Ginott

Mattie had a hard time shutting off last night. In fact, I gave out before him at 1:30am. Poor Peter he landed up tucking me into the hospital chair and then he stayed up with Mattie past 2am. I just couldn't function any longer last night, and knowing that I have several long days and evenings this week, I figured I better just stop and rest. As it is today, I feel so wiped out, tired, and drained. Just when I think it isn't possible to reach an all time low, I am introduced to it. I had to walk today from Mattie's hospital room to the clinic, and I literally almost did not make it. I felt like I was walking in quick sand, with no means of escape.

Peter attempted to go to work today, but he looked and acted as good as I felt. I really feel for Peter because he balances so much between Mattie's care and work. Logically, since Mattie went to bed so late, he got up around 11:45am. Mattie's oxygen supply, through the cannulas, was shut off this morning, and he is doing quite well breathing on his own. The breathing exercises seem to be really working. Before Mattie woke up, I finished a round of laundry, which I wanted out of the way, so I wouldn't be distracted by it when he woke up for the day.

My good friend, Lorraine (who I met at the George Washington University, when we were both students there), came to visit us at noon. Lorraine brought all sorts of wonderful treats for Mattie, including Golden Oreo Cakesters. This was the popular item for the day. She also brought Mattie a yogurt shake and cantaloupe. All of which were devoured later in the day! I wasn't sure how Mattie was going to greet Lorraine, based on his last seven day greeting of friends in his life. However, Mattie handled the visit very well. Lorraine gave Mattie a Sponge Bob DVD, which he is watching this afternoon after a long day in clinic. Thanks Lorraine! Mattie, Lorraine, and I played a matching board game, and soon there after Dr. Gonzalez came in to exam Mattie. Dr. Gonzalez spent quite a bit of time with us. She gets Mattie's style, which is you have to get to know him first and play with him before you are invited within the inner circle. Mattie showed Dr. Gonzalez the fantastic bug set he received from Joan Holden (Mattie's head of school) yesterday. This bug set is a hit. Lorraine, the nurses, and Dr. Gonzalez were fascinated by it and they really chatted it up. While Lorraine and Dr. Gonzalez were visiting, one of Mattie's respiratory therapists came by to work with Mattie. Everyone got to watch Mattie perform. He seemed to love the attention today. Mattie began with Brenna's Sponge Bob lake exercise. This has been a wonderful and ingenious exercise that Mattie enjoys doing every day. Today I could clearly see that Mattie is getting stronger based on his strength in blowing through a straw and through a harmonica. Then what caught us ALL off guard, is Mattie decided to share his cookies with Dr. Gonzalez, Katie (Mattie's wonderful nurse), and the respiratory therapist. I was down right shocked, and the ladies were clearly moved by his gesture! I wish I caught Mattie's smile on camera as he was sharing these edible gifts. It was priceless.

At around 1:30pm, Mattie was unhooked from his IVs, and wasn't on oxygen. So transferring him to his wheelchair was easy. Mattie spent over three hours in the Lombardi Clinic today, where he played with Jenny, Jessie, and Lorraine. Mattie worked on two different projects. The first one was a mosaic of who else? That's right, Sponge Bob! The other project he worked on was transforming a cardboard box into an animal shelter. Mattie, with the help of Jessie and Jenny created Model Magic animals for the shelter, and then we all played a game with the animals. The gist of the game was I bought two birds from the shelter, but at home I already had two cats. So the play scene centered around how to protect the birds from the cats, and even Scooby Doo was incorporated within our play. Scooby was supposed to be protecting the cats, and was doing a good job, until he became hungry and needed a Scooby snack (for those of you who are familiar with Scooby Doo, you know that Scooby is ALWAYS hungry, therefore these birds were unprotected more than they were protected).

While we were playing, Anna (Mattie's physical therapist) also stopped by. I spoke to Anna about next steps for Mattie. I feel that Mattie needs intensive physical therapy once he regains his strength and once the next round of chemo is complete. Since Mattie isn't going to school in the Fall, my goal (God willing nothing else shows up), is to focus on walking. I am looking into the National Rehabilitation Hospital as a possible option for inpatient physical therapy. I just worry that unless Mattie is bombarded with therapy and he can see other kids going through the process, we may not get very far in terms of his improvement. None the less, Mattie met his physical therapy goals for this week. Which was to be transferred, to stand on his feet, and to go in his wheelchair and get out of his room! I am also happy to report that Mattie is wearing pajamas today, so he is out of a hospital gown!

Left: Mattie holding up his model magic mosaic of Sponge Bob! From this angle, it almost looks like Sponge Bob himself is in the wheelchair!

Right: Mattie working on the mosaic, by pushing clay into the tiny framed out parts.

Left: The animal shelter Mattie made out of a cardboard box.

Right: Mattie had Jenny make a pulley system, so that the pets could ride an elevator up and down to their appropriate condo spaces.

While Mattie was working in clinic on his projects, I went outside into the fresh air for 30 minutes to have the lovely lunch that Lorraine brought me. It was so nice to sit in peace, and to get out of air conditioning (something else that I am NOT fond of!). As the week is wearing on though, I am finding the 11 months of stress and strain are taking its toll out of me. This feeling has happened a couple of other times before, and it usually passes thankfully. But today walking was painful. At one point I wasn't sure I had the energy to physically walk back to the clinic to get Mattie. That must sound very strange or funny, but Peter and I have both reached this level of physical exhaustion. The scary part is that this exhaustion can't be cured by one or two nights of sleep. We are way beyond this point, and what concerns me is in this depleted state either one of us could get sick, and then what happens to Mattie? So these are all things whirling around in my mind, and with a possible discharge day of Wednesday, the fact of the matter is going home adds more responsibilities to my day, more tasks which again who has the energy for?! There are days I wish for peace, quiet, and NO PLAYING. Of course then again admitting that makes me feel guilty too, because Mattie did not bring about this illness and he is the one who has had to directly live through these treatments. None the less, with each ounce I give to Mattie, that is an ounce that gets chipped away from myself, an ounce that I feel like I will never get back.

After clinic, Mattie came back to his room in a foul mood. He started to shut down and snapped at everyone. From Dr. Chahine to myself. In fact, there were two times that I refused to talk with Mattie until his attitude changed. Then he got angry at me for doing this and he returned the favor and did not want to talk with me, which of course only further frustrated me. So instead of talking to Mattie (which would have been a waste of time), I started talking to Mattie indirectly through the Sponge Bob doll on his bed. I conveyed my message through Sponge Bob, and slowly Mattie came around and we reconnected again. But by 7pm, Mattie wanted Peter at the hospital. When Peter arrived, he and Mattie decided to play with a toy that Linda gave Mattie called Meeba. This is an electronic toy, where you have to play games in order to get the prize locked up inside of it. I left Peter and Mattie for two hours tonight to jump on a professional conference call, and when I got back, they were still playing it! It has really captured their attention, or at least they are committed to see what the prize is!

Mattie had a great respiratory session tonight and even played Mary Had a Little Lamb on the recorder. I took a picture of Peter, Mattie, and Sarah Marshall (his wonderful HEM/ONC nurse) during this concert!

As we head into Tuesday, Mattie will be getting an MTP-PE infusion and most likely will be discharged from the hospital on Wednesday. Mattie is doing very well physically. He is NO longer on oxygen and his pain is under control.

We want to thank the Biers family for a wonderful dinner tonight and for your continued support!

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "In terms of today's quote, it reflects your relationship with Mattie; it is clear that sometimes your conversations and actions go right past his brain and directly to the heart. I was hoping to read that it was a really good day and that somehow things had sorted themselves out enough that the three of you were able to sit together and eat and talk and appreciate Father's Day. I can tell that did not happen. I am glad that you made it outside for a while yesterday, the sunshine certainly felt like a gift as I think most of us here in the area were beginning to feel as soggy as our lawns. I knew you would make progress teaching the technicians how to work with Mattie or any other child who is awake, aware and responsive but I can also tell that it costs you; it takes away from that rapidly shrinking store of energy, both physical and emotional, that you have stored to deal with the really critical issues. Reading the blog reminds me of reading about someone who is in a situation where they have to fight for survival; you shut down everything except the minimum needed to survive until the rescuers come. The question I have is, when will (and who will) rescue you and Peter from this situation and return it to a normal, dull family life. Somehow, even with Mattie released from the hospital and headed down the road to rehab, I think the exit road back to normal is pretty far away."

HAPPY FATHER'S DAY!

Sunday, June 21, 2009 -- To all the wonderful dads who read our blog we wish you a very Happy Father's Day!

Quotes of the day:

" It is a wise father that knows his own child." ~ William Shakespeare

"You know, fathers just have a way of putting everything together." ~ Erika Crosby

"When we choose to be parents, we accept another human being as part of ourselves, and a large part of our emotional selves will stay with that person as long as we live. From that time on, there will be another person on this earth whose orbit around us will affect us as surely as the moon affects the tides, and affect us in some ways more deeply than anyone else can. Our children are extensions of ourselves." ~ Fred Rogers

As many of you know from reading last night's blog, I have been troubled by the way respiratory therapy has been scheduled or lack there of with Mattie. Mattie doesn't respond well to people popping into his room without some time to transition to an activity, especially therapy. So inspite of the fact that I am truly tired, when Sarah Marshall (Mattie's wonderful HEM/ONC nurse) came into our room last night, I asked her how to handle the issue. I wasn't sure who to address my concerns with. Sarah Marshall took it upon herself to talk with the therapists on our behalf, and when one of the therapist's came in to work with Mattie at night, I explained to him my concerns. Again, these therapists are used to working with children in the PICU who are intubated and unconscious. So there is a learning curve for them as well. Working with a conscious and frightened child requires different skills. I am happy to report though, that our message has been absorbed. Today the therapists entered Mattie's room and invited him to select a time to do respiratory therapy. So far it is working like a charm! Though empowering someone usually does!

Mattie had a very difficult time getting to sleep on Saturday night. He complained of having pain, so at midnight Sarah Marshall gave him IV morphine. But in all reality that did nothing for him. Peter and I played a board game with Mattie and then I got into bed with him and read Mattie a story. Nothing was working. So finally I closed the lights in the room, to make it darker, in hopes that this would encourage sleep. I even massaged Mattie's head. I was getting very agitated watching Mattie. He was in bed, but not resting. Just staring at the wall and moving all of his limbs. He seemed so edgy and he couldn't calm down. By 3am, we gave him more pain medication, and then he finally fell asleep. But at this point in time, I felt like I was hit by a truck! At 7am though the activity in the room began, so you can see sleep doesn't happen easily here! In fact an x-ray tech came into the room and saw Mattie was sleeping. Fortunately Nicole, another fabulous HEM/ONC nurse, got a hold of this tech and got him out of the room. You will find it ironic that NO x-ray was even ordered for Mattie today, so who knows why we were fortunate enough to received this visit?!

Dr. Gonzalez (the attending HEM/ONC doctor on the floor) came in to examine Mattie today. She was very intent to wake Mattie up at 11:30am. I guess she feels that Mattie needs to go back on a regular sleep wake cycle, and sleeping passed a certain hour won't accomplish this. I don't know where I am with this philosophy. I understand that point of view, and yet I feel Mattie needs so much rest to recover and for his body to repair itself. I accept the sleep whenever it comes. Dr. Gonzalez wanted Mattie out of bed and outside in the fresh air again today. He fought this at first, but then later complied and we all had a lovely walk together.

Mattie wished Peter a Happy Father's day, and as Peter always says to Mattie, that the only reason he can celebrate this special day is because he has Mattie. It is a very sweet dialogue between them. On our walk today, I took some pictures that I would like to share with you!

Left and Right: Peter and Mattie together in the Georgetown University Hospital Gardens! It has been pouring rain here all week, so seeing the sun today felt like a miracle of some sort!

Left: Mattie spotted a sparrow on our walk. He was the only one who did, and he made us stop and admire the bird. In fact, Mattie's whole illness has caused us to stop and admire the more natural and simplier things in life.

Right: This afternoon, Dr. Chahine stopped by to visit Mattie. Yes on a SUNDAY and on Father's day! I forgot to wish Dr. Chahine a happy father's day (mostly because Mattie was in one of his moods and I was focused upon him), but hopefully if he is reading this, he knows that our intentions were for him to have a great day. In addition to being a great surgeon he is a dedicated dad. Dr. Chahine brought Mattie a Star Wars robot today. He said that his girls picked it out for Mattie. I can't think of a more thoughtful gesture! You can see the robot in the picture, it has a red head!

I am happy to report that Peter got a break tonight. He actually met up with Dr. Bob to see a movie and have dinner together. While Peter was with Bob, Ann and Abigail came to the hospital. Mattie has been so opposed to visitors all week, and it was my hope that Abigail could breathe some life into Mattie's mood. While we were waiting for Abigail to arrive, Nicole tried to shut off Mattie's oxygen supply through the cannulas, in hopes that he would breathe effectively on his own. But after several minutes with the pulse oximeter alarming we could see it was too soon to try this. So Mattie is back on oxygen. Naturally we are unable to go home until Mattie can be weaned off of oxygen. However, in the midst of all of this, Mattie asked me a fascinating question. He wanted to know if being married meant you have to do everything with this person. I guess the question was, do married people ever have different interests or do separate activities? From his perspective, I could see why he would even be asking this question, since Peter and I are rarely apart these days, and NO we don't for the most part do separate activities from each other. I explained to Mattie that even married couples like to do different things, and then gave him the clear example of Peter loving to watch the Red Sox, and well Mattie knows where I am at with this. I could see his head processing this, because he also translated the marriage question down to friendships. He cited an example for me when he was in kindergarten last year. He said his good friend came up to him on the playground and wanted to do a specific activity with him, but he did not want to do it. He is now reflecting on the fact that he most likely hurt her feelings, and was wondering if it was really okay to say no if you really don't want to do something, but your friend does. The conversation centered around being different and wanting different things from your friend. The whole conversation to me was profound because it speaks volumes about our current situation.

After our chat, Mattie literally fell asleep. I think when the oxygen was turned off, Mattie was really struggling for air, and therefore, was simply exhausted from this. However, before he fell asleep, he seemed truly interested in Abigail visiting, so much so that he asked me to leave the door and curtains of the room open, so he could see who was coming in the hallway into his room. Despite his best efforts he couldn't stay awake. When Ann and Abigail visited Mattie was asleep. Ann gave me the opportunity to have dinner outside the room. I basically ate dinner outside, and it was glorious to be in the fresh air. But even in moments when I am sitting still I feel like I am on hyper alert mode. Will this feeling ever end? Not sure.

When I got back to the room, Mattie was still asleep, and I tried to wake him up, and Sarah Marshall (our wonderful night nurse) even changed Mattie's chest tube bandages, and he did not move. But as the time wore on, I could tell Mattie was awake, but just pretended to be asleep. So I motioned to Ann that I thought Mattie was embarrassed. She got it right away and removed herself and Abigail, so I could talk to Mattie privately. As soon as they left the room, he popped up and looked like he was going to cry. He clearly was very upset. Though I know Abigail would accept Mattie any way he looked and acted, I do think that sometimes one's personal assessment is much harder to face than the actual reactions from others. Ann and Abigail respected Mattie's choice to be alone, and left some gifts for him and a Happy Meal! We want to thank Joan Holden (Mattie's Head of School) for the wonderful real bug collection. Mattie, myself, and Sarah Marshall were busy examining these bugs with a magnifying glass and classifying them! Thank you Joan for thinking of Mattie and for the constant support and generosity! I also want to thank those of you who are giving Ann gifts for us to add to Mattie's treasure chest, or incentive box for doing therapy. Your thoughtfulness means a lot.

After Ann and Abigail left, Mattie was in a funk. I went outside the room to get something for Mattie and I ran into Ellen, another amazing HEM/ONC nurse. Ellen said she wanted to give Mattie a big kiss. So when I came back to Mattie's room, I told him that Ellen and Sarah Marshall wanted to give him a kiss. He actually said he was fine with this, so I called them in. Even in his down mood, after being kissed by these beautiful and special nurses, he couldn't help but SMILE! Thank you Ellen and Sarah Marshall, I needed to see that smile tonight.

Left: Sarah Marshall, Mattie, and Ellen!

As we were awaiting Peter's return from his night out, Mattie and I did respiratory therapy together. He did a great job with the therapist, and I can see his breathing is getting stronger! He can do more and more each day. For his good job doing therapy, he was able to pick out something from his treasure box. He picked out a Sponge Bob coloring set, and he and I sat down and colored for a while. Then we moved onto cars and other more aggressive play!

As I am typing this blog, Mattie is eating his happy meal with Peter by his side. His next respiratory session is at 12:30am! I do want to thank Ann for planning a way to get Peter out of the hospital today and for visiting and supporting us tonight! It was funny, after talking with Ann, I came to the conclusion that I long for the days when life was simpler or DULL (well dull in comparion to this emotional rollercoaster we are living). Tonight I find I am so tired, even moving sucks energy from my body that I really don't have in reserve to spend. I joke with Peter all the time, but there is truth in jest, this experience is aging me, and internally I feel much older than my actual age.

I would like to share four messages with you today. The first message is from my friend, Charlie. Charlie wrote, "Saturday sounds like an all around awful day. People marching in and out, no attempt at coordination, appointments or courtesy. This certainly does not sound like an environment one would choose in order to rest and get well. Unfortunately it sounds like you are back to your role as door guard for Mattie if he is to get any rest at all. I am glad that the doctors seem to understand and appreciate the need to make the connection to Mattie even if the technicians do not. I guess you are going to have to "teach" that class in empathy and child development if there is to be any real success with the therapy. I do hope that Sunday is a better day and that you get to have your shower (a long and luxurious one) in peace so that you have a better start to the day."

The second message is from the Transporters' on-line news letter this morning (thanks Charlie for forwarding this to me):
"I love you guys (and gals), I cannot believe the number of e-mails I got in response to Mattie. Wow it blew my mind. Charlie (Iron Lady) Brown, there were a lot of prayers said on the 15th and at other times. Many e-mails even took into account the time differences. Wow. Please pass along to the parents of Mattie that there were a lot of military and civilian personnel who understand and they are pulling for this young person."

The third message is from my mom. My mom wrote, "When it's 4AM and you're not feeling so good and it's dark outside and scary, who are you going to call? You are going to call YOUR BEST FRIEND! That's why Mattie called YOU! It was ONLY a matter of time before he turned to you again because you always ease his fears with your serene and loving presence and that makes him feel safe and secure. That's what good mommies do and you do it BEST!"

In honor of Father's day, I am sharing this message I received today from my dad. My dad wrote, "Many thanks for the kind and most moving sentiments. As parents yourselves you know how precious your child is! So it's the same for me--Vicki, you will always be my very precious child."