Saturday, January 10, 2009

Saturday, January 10. 2009

I received this message from my friend, Charlie today, "It is very clear from reading the blog that you and Pete have been successful beyond belief in helping Mattie achieve strength in his heart and mind to support the work that is being done on his body. His turn around in attitude tells you that it is all worth it, that even if you have some additional trips to the hospital ahead of you, that the wonderful, vibrant boy who is Mattie will make his reappearance once you are away from that environment. Have faith, we all continue to pray and to celebrate Mattie's victories!" This leads me to the Quote of the Day!

"Know, then, whatever cheerful and serene supports the mind supports the body too." ~John Armstrong

It is 10:30pm, and I have yet to pack us up for New York tomorrow. Great, no? I will get to it soon, and hopefully once I finish writing the blog, I will be inspired to pull it together. I have received several e-mails this week wishing us well on your trip to New York, but I have not made it clear to our readers why we are going. So I wanted to take this opportunity and explain. As many of you recall our last trip to Sloan Kettering was HORRIBLE! In fact, I never thought I would be heading back there again. As a recap, Sloan basically said that we should be doing pallative care for Mattie and not treat him aggressively, because no child with multifocal osteosarcoma has ever made it. Upbeat, no? The chief of surgery at Sloan said he wouldn't do limb salvaging surgery on Mattie, because he questionned the quality of life Mattie would have. I don't know, but some sort of life is better than none at all, no?! Again, thankfully we knew Bob Henshaw, who not only has talented hands, but a compassionate heart.

So what on earth could Sloan be offering us? Well there are ONLY two hospitals in the country that are approved to administer the experimental drug, MTP-PE, to osteosarcoma patients (particularly patients who are at high risk or who have lung metastases). The drug IS NOT chemotherapy, instead it is an immune system enhancer. The drug is administered twice a week, and only takes an hour to infuse. This is done for 12 weeks. There after it is administered once a week for an hour for 24 more weeks. The FDA only approves this drug to be initially administered at Sloan Kettering or MD Anderson in Texas. So geographically Sloan makes sense for us. Fortunately for us Georgetown applied for compassionate access, which means that all remaining dosages for Mattie after the initial one can be giving at Georgetown rather than Sloan. The clinical trial Mattie will be entering at Sloan is entitled, LIPOSOMAL MURAMYL TRIPEPTIDE PHOSPHATIDYL ETHANOLAMINE (L-MTP-PE): COMPASSIONATE ACCESS FOR HIGH-RISK OSTEOSARCOMA. L-MTP-PE stimulates the innate immune system, or the body's first line of defense, to kill tumor cells, and based on data from clinical studies, when used in combination with surgery and chemotherapy, L-MTP-PE reduces the risk of recurrence of osteosarcoma and improves long term survival. To learn more about MTP-PE, please visit this website: http://www.drugs.com/nda/l_mtp_pe_070723.html

It is our hope that the infusions go well, and Mattie doesn't have an adverse reaction to MTP-PE. There is a possibility he may develop fevers and rigors (chills), and if so, he may need to be hospitalized. We certainly hope the whole thing is uneventful. Will MTP-PE help Mattie? I have no idea. Frankly when I read the research literature on the drug, I was underwhelmed. But with that said, do I care what the statistics actually indicate? Or do I care if the drug could potentially benefit Mattie? After all, each patient responds differently, and we never want to look back and say, what if? What if we could have done something and did not. Considering there are NO known side effects to MTP-PE, we felt it was worth the trip. I hope this helps explain our thinking for returning to New York. We are fortunate to have support in New York. My lifetime friend, Karen is there, along with our former DC neighbors, John and Goli, and Mattie's babysitter, Emily. It will be wonderful to see them, despite my hesitation about Sloan Kettering.

As for today, Mattie had another GREAT day. Mattie was invited to Abigail Henshaw's birthday party (Abigail is Ann's youngest child)! He was very excited about this, because as you can imagine Mattie doesn't attend many parties. I was somewhat nervous about today. I was always a mother hen to begin with, but now that Mattie has cancer, I try to assess things ahead of time that may cause him distress. The only thing that eased my mind about today was I knew that Ann was running the party. But none the less, you just never know how Mattie is going to react with other kids, and my concern was would he get frustrated or upset because he couldn't do what the other kids could do. The resounding answer to this was NO! Mattie did great. He started out slow, but by the end, was full of life, shuffling around, and fit right in. He got into the spirit of the party and what was a sight to see was how the kids included Mattie. Talking about embracing differences. You all would have been impressed with these children. It seemed to me they all treated Mattie just like any other kid and of course Ann and all our RCC and SSSAS friends were right there encouraging Mattie and helping him integrate into the party.

Ann did a fabulous job today, and all her activities Mattie was able to participate in, and he really got into being a part of the Dolphin team. The party's theme, was "under the sea," and Mattie loved it. The kids sat on beach towels and worked very cooperatively. Frankly I am seeing we adults could learn a lot from the children around us. I tried to snap some pictures of all the fun, spirit, and energy at the party. Personally I think Ann worked so hard at putting activites together, that the kids were guarenteed fun.

This picture features the birthday girl, Abigail with Ann. You can see Mattie in the lower right hand corner, looking on and smiling!

I snapped a picture of Abigail with Ann and Bob as she was blowing out her candles. The cake was beautiful and creative. It was made of cupcakes frosted together. So it was very easy to plate this cake, it just meant grabbing a cupcake.

After the kids had cake, they were happy and quiet, and Ann read them a dolphin story. They were glued to the story, and I was able to capture this moment of calmness. Mattie loved the cupcake so much, he had blue frosting all over his mouth! What was particularly special about this event was the interaction between the RCC and SSSAS communities. Both of our worlds under one roof.

When the party came to an end, Mattie stayed a little later to see Abigail open up her presents. In addition, he continued to play his chasing game with Ann (the one that started at the hospital on thursday). But this time, the kids got into it as well. Tanja (a RCC and SSSAS mom and friend) was a great sport. She chased Mattie for quite some time, and she really hammed it up. Mattie loved it and he got a great work out. I snapped a picture of Mattie with his scary face trying to corner Tanja and Ann! Abigail and Mattie's friend, Sara Catherine were also joining in on the fun. Tanja's daughter, Katharina (a SSSAS student) also helped Mattie out tremendously at the party. Doing crafts with him, helping him collect candy from the pinata, and just being a big buddy. These are just highlights from today, but Katharina's kindness and that of all the children have left a lasting impression on me.

I could go on and on about today, but I better get my act together and pack. But I guess what I want to say is I know we are a part of the RCC and SSSAS communities, and today more than ever confirmed this. We may not be in school this year, but our presence and Mattie's spirit is there and I can see he is NOT forgotten. What a great gift for a parent to receive. I also thank Ann for inviting Mattie. Mattie is very fond of Abigail, and it is great they can continue their friendship. But what can I say about Ann? Here is a woman that loves my son almost as much as I do. I am learning a lot from my relationship with Ann, because I have deep respect for her and I feel that our cancer experiences have bonded us together forever in the heart and mind.

We want to thank the Peterson family for an absolutely fabulous homecooked dinner. The roasted chicken was outstanding, and Mattie ate a good portion of chicken, carrots, and potatoes tonight. Dinner was fabulous, and then Karen even baked us an apple/cranberry pie. Karen thank you for the magazines for the road and a special thank you for the chocolate supply for my trip to NY. My addiction thanks you. Mattie loved his gifts too. We have already had a sword fight, flew some planes, and will end the evening with the pop pop shark book. We also want to thank Elizabeth for the bionicles. These will keep Mattie very busy. Mattie received a wonderful shark's tooth today from Sylvie. She got this tooth on her trip to Florida, and she wanted to share it with Mattie. How special. We also want to thank Rev. Beales (chaplain at SSSAS' lower school) and Susan DeLaurentis (Director of Counseling at SSSAS) for their wonderful cards to Mattie!

I end tonight with another song for you. I learned that in good times and in bad times, you all are on my side. That is indeed what friends are for. You all enable us to keep smiling and keep shining! Enjoy Dionne Warwick's, "That's what friends are for."

http://www.youtube.com/watch?v=cv1oPvSg5G0&feature=related

Friday, January 9, 2009

Friday, January 9, 2009

Quote of the day (Thanks Beth S.!):

The art of being sick is not the same as the art of getting well. Some cancer patients recover; some don't. But the ordeal of facing your mortality and feeling your frailty sharpens your perspective about life. You appreciate little things more ferociously. You grasp the mystical power of love. You feel the gravitational pull of faith. And you realize you have received a unique gift—a field of vision others don't have about the power of hope and the limits of fear; a firm set of convictions about what really matters and what does not. You also feel obliged to share these insights—the most important of which is this: There are things far worse than illness—for instance, soullessness. ~ Journalist Tony Snow, who died of cancer in July 2008 after a three-year battle with the disease, in The Jewish World Review (2005)

I have so much to tell all of you tonight, that I had to make a list while I was writing. Mattie began his day with a nightmare that scared him so, that he woke up. His nightmares are always of the same thing, scary people are around him and hovering over him. Funny how dreams help us process our reality. In any case, Mattie got up and today I am happy to report Mattie was able to wear his old clothes again. He no longer needs adaptive pants, and he can even work his way into a pull over shirt or polo. That is a major accomplishment. I think this transition back to regular clothes and time away from the hospital has all been very beneficial for Mattie. It is giving him a better outlook on life and his situation.

At 10:30am, Mattie had a physical therapy session with Dan. Dan brought over his Wii (which is a home video game console released by Nintendo). Basically, to me, this is beyond a video game, because it provides a virtual reality type of experience where you can move your body and pretend to be a part of the video taking place. So for example, Mattie selected bowling today. He literally was standing up, holding a device and swinging his arm as if he was throwing a ball down a bowling alley. Mattie loved the whole experience, and he played a Wii guitar as well. I was hearing all sorts of classic rock music coming from downstairs! Toward the end of the session, Dan helped Mattie outside to try to ride his bicycle with the training wheels. Mattie was able to get on the bicycle, but he did not want to move. He was too scared, and then started crying. So we brought him inside and I told him each time he tries to ride it will get easier. I can only imagine how frightening being on a bicycle is when he feel that you are not in control of your body and it movements. But we will keep at it, and Peter is encouraging him to try it again on Saturday with him.

After Dan left, we had a visit from Evelyn Holm (to help you make connections to people, Evelyn is married to Coach Dave from SSSAS). In fact, Evelyn is one of the first parents I met at SSSAS. Evelyn and Dave were our Team Mattie point people for the afternoon. Evelyn brought me a lovely lunch (I loved the butternut squash soup), which I really appreciated. Evelyn also sat with me and said a lovely prayer for Mattie and for me. It is very nice to have this spiritual support and I appreciate all of you praying for me. Because prayer for me right now is not something that comes easily. I am physically and mentally worn down. I do think that prayer is important, but I am also trying to come to terms with this fundamental question, why me/us God? Not a question that can ever be answered, but one that I continue try to come to peace with. So I appreciate Evelyn helping today bridge this spiritual gap for me.

Mattie had an appointment today at Georgetown with Dr. Matt. Matt Biel is a child psychiatrist working with us on Mattie's case. I think Matt has really helped us manage Mattie's medications and his levels of anxiety and depression now are stabilized. Mattie met with Dr. Matt today for a play therapy session. Before we got to the session, Mattie was lucky enough to have two friends join him and keep us company, Coach Dave and Liza (one of our favorite hospital volunteers). We actually met Coach Dave as we were coming through the parking lot to the building where the appointment was. All three of us got a kick out of the decor of the building, a building which really needs a complete overhaul. The psych floor had brick walls and brown shaggy carpets. I am telling you if you aren't unstable when you first visited the floor, you will definitely be after such prolonged exposure. Coach Dave was telling Mattie about his trip to Georgia where he visited a turtle rescue organization. Dave even mentioned how some of the turtles needed physical therapy from their injuries. Mattie was completely fascinated. Soon there after, Liza joined us, and then it was a real treat to watch all three of them interact with each other. Liza brought Mattie several Christmas presents. Thank you Liza for the wonderful tadpole neck pillow and matching blanket, all the playdoh, and the cute duck hat and mask. Mattie, Liza, and Dave had a blast playing with this tadpole pillow. So, picture a cute tadpole, all in green, in the hands of a six year old boy who finds potty humor thoroughly hysterical. Fortunately Liza and Dave were great sports and played along. Mattie had a blast with them, and I am happy they were there, because it gave me time to fill out consent forms, insurance forms, pick up slides and scan reports from the clinic, and then to also talk with Dr. Matt after the session was over. Thanks Dave and Liza for spending your afternoon with us. It made a big difference. The ironic part about all of this, is Dr. Matt, Coach Dave, and Liza all mentioned to me that they notice a big difference in Mattie's behavior now. That he is energized, animated, and seems happy. I see Mattie each day, and grow with his daily changes, so it was wonderful to hear the perspective of people who may not have seen him for two weeks. The power of being away from the hospital is a strong and healing force.

After the therapy session, Mattie went over to Charlotte's house. Mattie was invited to see the movie, Star Wars (which he has NEVER seen before), and to have popcorn. He was so excited about this that he even told Dr. Matt about this. Integrating Mattie back into his social world is crucial, and I so appreciate others being conscious of how difficult this may be for Mattie. Ellen (Charlotte's mom) planned the perfect activity for the kids today. It was a sedentary activity, but one which got the kids to chat with each other and enjoy their time together. It was a wonderful gift. While Mattie was watching the movie, I ran out to Target because I needed to buy a few things for Mattie before we head to NY. Thank you Ellen for giving me this opportunity, and also for bringing me back teas from Harrod's in London. I can't wait to try them, and it was so nice to be thought of while you were away.

I would say this was another great day for Mattie. When he arrived home tonight, Kathie (his occupational therapist) came over. However, Kathie wasn't coming to do OT, she came to watch Mattie for us so that Peter and I could go out to dinner. Kathie e-mailed me yesterday while I was waiting for the scan results and said that she wanted to give us this gift of time together. Normally I would have said no, because I don't like troubling people, but instead, I jumped at the opportunity. I know Mattie is comfortable with Kathie and I also know that Peter and I deserve a meal where we are not thoroughly stressed out. When Kathie arrived, Mattie was thrilled and very excited. He had no problem saying good bye to us. Peter and I had a lovely dinner together and chatted about everything and caught up on a month's worth of information. While at dinner Peter had me laughing hysterically, so much so the table next to me was watching us. Peter and I are like night and day in the morning, in terms of our routines. I can't move an inch without first taking a hot shower, and Peter can't stand the thought of showering first without having coffee. Peter was up again until 4am working on a proposal for work, and only got about two hours of sleep. Because he was running late this morning, he proceeded to shower first before getting coffee. BAD, BAD idea! The way he described his shower this morning almost had me choking, that is how much I was laughing. He sounded dazed, confused, and with total blurry vision in the shower. In fact, I think he may have fallen asleep in the shower at one point. The moral of the story here is don't change something that works for you. If may not sound funny to you, but trust me, it could have been a scene from a sitcom episode.

When we got home, Mattie was still having a great time with Kathie. Kathie told me that Mattie was non-stop talking. He wanted to show her all his toys, puzzles, trains, and even his air craft carrier. I think he was just happy to have this time with Kathie. It was very special to see Mattie connecting with someone other than us. Thank you Kathie for this wonderful gift and for having such a special connection with Mattie. If you could have seen their initial sessions together years ago, I wonder if Kathie would have ever thought that their relationship today would be possible?

There is something I can't get out of my mind tonight. I went to the clinic today to pick up Mattie's paperwork, slides, and scan results to take to Sloan Kettering. While I was there, I bumped into a mom I had met in September. Her son has a rare form of cancer called neuroblastoma. I was surprised to see her in clinic because her son completed treatment. Well it turns out after several months away with no evidence of disease, the cancer has returned in full force. I can't tell you the look of despair, pain, and heartache on this mom's face. In fact, even the son understood what was going on, and he is only 6. This little boy was diagnosed when he was two. This boy knows the inner workings of the hospital and he knows that he has another fight ahead of him. When this mom told me what was going on, I couldn't help but experience great sadness for her and to empathize with her situation. There for the grace of God could go Mattie. I have tried to shake this image today, but it keeps popping up. The one thing I have come to understand it that as a cancer community when one of you is down, we are all down. It just magnifies the level of pain over this whole process. When I first met this little boy in clinic he was clearly not himself. He was angry, hostile, and closed off. When I met him today, he was delightful, charming, warm, and energetic (he even gave me a gift before he left made out of clay). It is heart breaking to know that this energy and life will once again be striped from this little fellow. The one positive of the clinic visit, and believe me I needed a major positive, was I bumped into Jenny.

Jenny has been working on getting us Lion King tickets for the broadway show while we are in NY. Tonight I received an e-mail from Jenny confirming the tickets. Jenny wrote, "Jessica Moore from the DC office of the Walt Disney Company was able to use her unparalleled super-sweet-talking skills to get you all 6 comped tickets to The Lion King on Tuesday evening!!" Thank you Jenny (also thank you Jessica and Mr. Padden!) for making this happen. I told Jenny that my parents used to take me to broadway musicals all the time as a child. Which is probably why I LOVE and relate many things to music. However, I have never introduced Mattie to musicals before, and I feel Jenny is helping me to carry on the family tradition. Thank you Jenny for all your support and helping us to make this a memorable trip.

I received two e-mails today that I would like to share with you. The first one is from my good friend, Lisa. Lisa and I met in graduate school, and though she no longer lives nearby, she e-mails me all the time with supportive and hopeful messages which are greatly appreciated. Lisa wrote, "Yesterday and today, I celebrate for you, Mattie, and Peter. This IS wonderful news. But when I read your blog last night after class I read two things that I am celebrating. One, is the outcome of yesterday's scan; and two, the comment by the docs that the medicine--figuratively speaking--over the past two weeks that YOU and PETER are giving Mattie is working. Out of everything you have ever written on the blog, that is the most magnificent news, i.e., that an outsider can see progress in Mattie not only in his physical condition but in his psychological stance. As you know BOTH are equally important. In a nutshell, what it said to me is you and Peter are helping Mattie have a quality of life and hardiness (and some joy) as he and you all move through this "getting better" period. Vicki THAT comment from the doctor is a huge point that I hope you too will celebrate along with the other outcomes from yesterday."

The second e-mail is from a friend and RCC mom. Beth wrote, "You 3 remain in my thoughts and prayers each day. I fell off the blog wagon for a few weeks in November when one of my best friends suddenly and unexpectedly lost her teenage son. Although I was very busy and consumed with her and her family, yours was never far from my thoughts and at that time it seemed I was praying day and night for so many things -- Mattie included. What I learned last month was that each day is a gift - as I know you already know. And, that the little things are not important. What's important is that each and every day you tell those around you that you love them. You tell those around you that they are important and you go to bed each night thinking about those moments where there were smiles, not the moments that tried our patience. Your blog has taught so many of us these wonderful life lessons and I know that you are always thanking everyone for what they are doing, but I want to THANK YOU for sharing your journey with us and allowing us to learn something from you. Charles continues to be awestruck by Mattie's Lego creations and thinks Mattie is so cool, because Charles has just not yet mastered Legos. It is interesting to me that although Charles has not seen Mattie in almost 2 years, Mattie apparently made such an impression on him that he does still remember and talks about some of the things they did together at RCC. He talks about him as if he just saw him last week and I must tell you that Mattie and Zachary are the only ones he talks about unprompted by photos or some such memory jogger. To you that should again remind you of Mattie's power with others and how wonderful he is."

I want to end tonight by highlighting two fundraising opportunities that are in the works to support Mattie. The first one is a recipe treasury which will be unveiled in the spring during Mattie's Osteosarcoma walk. I invite you to read the message sent to you by Liza May (a friend and upper school mom at SSSAS). Liza is a fabulous cook herself and when she brainstormed this idea, I was very excited by its possibilities. Thanks Liza and the other 12th grade moms for working on this fundraiser.

Hi to all Team Mattie members and supporters of the Brown Family -

When talking with Vicki during the holidays and then reading and re-reading some of her entries on the blog, it is clear that Vicki, Pete and Mattie have been provided with some wonderful lunches and dinners by so many of you. Vicki speaks so lovingly of the delicious meals - the treasured recipes, scrumptious sweet treats, elegant entrees, yummy breads and lots of delectable chocolate items. It dawned on me that it would be wonderful to gather all of these recipes plus some of the stories and quotes in a book to share with each other. It would be a real treasure for all of us and something that we will all cherish. More importantly, I'd like it to be a fundraising item as part of the Walk in the spring that Liz Chiaramonte is organizing.

Right now, I can envision it as:

Mattie's Menus

or

Sharing Mattie's Menus

A treasury of recipes, sweet thoughts & memorable quotes


I think that it could be produced for a nominal amount of money by designing it as a half size copy with the pages copied with a hard cover with a spiral binding. I'm going to look into possible printers, copiers and options available.

If you would like to participate or help in any way, please contact me at may21@cox.net. If you would like to share one of your recipes of a dish or item that you provided to the Browns or a thought or quote that you shared with them, please forward it to my e-mail address above. I plan to have an organizational meeting at the end of January and will be working closely with Liz. Thanks for your support! Liza May

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The second fundraising opportunity I just learned about today from Ellen (Charlotte's mom). Her son Tyler, you may recall raised over $7,000 for Mattie hosting a bingo night at his school in the fall, has developed another fundraising event for Mattie. Well Tyler, along with several other SSSAS high schoolers, brainstormed a live music event. This event leaves me speechless on so many levels. Because it highlights the beauty that can come out of tragedy. Teens are working together, in a very committed, energetic, positive, and creative manner to support the treatment of a six year old in their community with cancer. I don't know about you, but I am thoroughly impressed. Tyler's initiative impresses me beyond belief. He and others contacted several local establishments to get them to sponsor and donate items to raffle off at the event. I am in the process of having Peter upload the flyer on the blog, but here are the details. Thank you Tyler, you are a remarkable young man, and we are grateful for all that you are doing to help Mattie. It if unfortunate that we will be in NY for this fundraiser, but it is my hope that it is well attended, and my hope is the spirit that I saw at the carwash in the Fall, is rekindled at this event. For those of you who do attend, please take pictures!

Thursday, January 8, 2009

Thursday, January 8, 2009 -- A Perfect Day!

Quote of the day (Thanks Liza!): "God doesn't give you the people you want, He gives you the people you NEED. To help you, to hurt you, to leave you, to love you and to make you into the person you were meant to be."

Mattie and I read some wonderful sea creature books together that he received from a science teacher in Washington state last night. Mattie enjoyed them very much and we eventually got to bed at midnight. Mattie woke me up a couple of times last night, and at 5am, he seemed up, but eventually went back to sleep. At around 4am, I noticed that Peter was still up. He was working late, and trying to catch up on work since he missed a lot last week while I was sick, and of course he will be missing more work next week when we head to Sloan Kettering. You have to wonder how we function around here on such little sleep and so much stress. It is a wonder.

This morning, Mattie arose at 8am. At which point, I got him dressed for the hospital. He wanted to eat, but because there was the possibility of him being sedated for the CT scan, I had to make sure he was NPO (nothing by mouth) as of midnight. I learned my lesson once, in which I gave him a teaspoon of yogurt prior to sedation, and the PICU doctor overseeing the sedation refused to allow the scan to take place. I understand the need for precautions, but she made me feel so terrible that day, so when they tell me they want Mattie NPO, NPO he will be. In the car, Mattie and I talked about the CT scan and how I knew he could do it without sedation. I also told him that the procedure would be so short, and there was so much fun in store for him, that there was no time to be sleeping with sedation. Linda suggested taking Mattie out to lunch at a Japanese style restaurant at the hospital. Since Mattie enjoyed Charlotte's birthday luncheon so much, Linda thought he would get a kick out of this today. Mattie understood this would be his reward if he went through the scan without sedation.

The registration process went fairly smoothly at the hospital. I always find it fascinating the looks I get from some people who pass us by. They can clearly see Mattie is a cancer patient. Some are not sure how to react to us, and others smile, and try to engage us. It is an interesting experience and feeling that it leaves me with. We met up with Linda pretty soon after we registered. Linda basically spent her entire day with us. We would be lost without Linda, and the role she serves is so vital, and psycholgically as powerful as the some of the medications Mattie is taking to make him better. Linda came armed today with a CART load of activities to keep Mattie busy and entertained. While we waited in the day surgery center to be called to the scan, and literally we waited at least an hour, Linda and Mattie built a race car and played with model magic. Mattie wanted to surprise me with his creations, so I had to close my eyes while they were working. So I did. I put my head back and closed my eyes. I was feeling crummy and congested, not to mentioned very nervous. But while Mattie was occupied with Linda, suddenly my left ear popped and I could hear out of it. That was like a miracle, since I couldn't hear out of that ear since I got sick over 10 days ago. So I started this taxing day with the first miracle.

Then we headed to the CT scan room. Mind you we were missing two crucial people, Jey and Debbi. Jey is Mattie's "big brother." Jey always does Mattie's CT scans. However, he was out on paternity leave. Debbi was also out for the week, and she usually does Mattie's sedations. So I felt a little lost without them. In fact, while Mattie was getting a CT scan, Jey called from home to talk with me. He wanted us to know that he was hoping for good results today. What does that say about the Georgetown staff? I think a lot! Linda engaged Mattie with the movie Wall-E while he was in the CT scan machine. Mattie was teasing Linda about the cockroach in the movie, and that got his mind occupied. Linda is a marvelous distraction. Mattie did the scan in minutes. It was quick. Mattie did it without sedation, he just received some Versed, which is an anxiety medication and the recovery time from that is quick. So that was the second miracle today, a scan without sedation! After the scan, Mattie went back to the day surgery center so they could check his vitals. While there, Linda surprised Mattie with a bag of gifts to congratulate him on his brave achievement. Mattie received some wonderful Wall-E books today and even walkie talkies (which he loves!).

Before we headed out to lunch, we stopped off in the clinic so Mattie could have his vitals recorded there and to have his blood drawn. I wanted that behind Mattie so that he could enjoy lunch and not have to worry about being poked and proded after lunch. Mattie cooperated and he was excited to hear that Jenny was joining us for lunch. Jenny (one of Mattie's art therapists) is another person I am thoroughly fond of. Jenny has a smile and such a caring demeanor, you just feel better talking with her. We are so lucky to have people like Linda and Jenny in our lives, and we missed Jessie today, who was home sick. All I kept thinking of today is I received two miracles already, and things in my book come in threes. So I had a feeling that perhaps something positive would be found in today's results.

I need to mention that throughout the morning Ann and I had been in contact with each other several times. Ann was on a mission to get Mattie training wheels and wanted to support us in any way possible. So I told Ann to come to the hospital and she could join us for lunch. Little did Ann know what was in store for her. So Ann, myself, Linda, Jenny, and Mattie headed off for a lunch experience that I won't forget anytime soon. First I have to admit, I never had a Japanese food dining experience like this one. What entertainment! There were eggs, bowls, and food flipping in the air, not to mention a volcano made out of an onion. I took a picture of this flaming onion, and Mattie's reaction to it. I thought his smile was priceless. It was truly memorable. Everything about today's hospital experience created what would constitute, The Perfect Day.

In addition, Ann took a picture of all of us together. I am quite sure Linda and Jenny rarely get to go out to lunch while working, so I am happy this happened today. It was wonderful therapy for Mattie, and he loved the social experience. He certainly needs these!

left to right: Jenny, Vicki, Linda, and of course Mattie

Are you curious to know what Mattie ordered for lunch? Well he ordered shrimp. I was stunned. He proceeded to tell Linda and Jenny that he loves shrimp. Okay! Well he wasn't kidding. Mattie attempted to eat with chopsticks and was animated throughout lunch. Jenny and Linda found ways to get Mattie to eat, and before I knew it all the shrimp was gone! But the funny part, as we joked with him, the shrimp energized him and he began to play a game with us. He developed into this character who had an evil eye. He would jump out of his chair, and come over to you and look you in the eye and give you this scary look! I captured this facial expression so you could understand what I meant. As he came over to me, Ann snapped a picture of him trying to scare me.

Mattie then tried to scare Ann. But Ann began to play a game with Mattie. As he would get close to her, she would jump to the next chair over. We were sitting in a U shaped table, and there were other empty seats around us. As Ann kept moving, so did Mattie. Mattie literally was making circles around the table. I caught two great pictures of Ann and Mattie in motion. Ann is an occupational therapist by training, and her skills just came out today. Mattie was moving around, and using his parts and not even realizing what he was doing. What physical therapy Mattie got today, and Ann I am sure won't forget the evil eye any time soon. Linda and Jenny were watching this and were impressed with how well Mattie was moving. Mattie has a special spark about him. When he is on, he has a way of engaging others, and today we were all having a good time watching him having fun and smiling. That was a great gift.

After lunch we headed back to the clinic. Dr. Toretsky was already waiting for us there, and it was only 2pm. He greeted us with a smile, and started chatting with Mattie. So I could tell he had some what good news to report. Mattie and I showed the pictures we took at lunch to Dr. Toretsky and then Mattie started working with one of Linda's new interns, Meg, while I went to meet with the doctors. Right before the meeting Ann said something that eased my fears. She said no matter what Dr. Toretsky told me, we will deal with it. We will just need to ask for a bigger miracle. Some how that was the right thing to say at a very stressful time. Ann did attend the meeting with me, because either this was going to be a good meeting or a very difficult meeting, and I appreciate her support in going through this with me. This is not an easy position to be in as a friend, but I think Ann has had her own harrowing experiences with caring for her brother who had cancer, which gives her insights in how to help me. None the less, having her there made a big difference to me. Dr. Toretsky told us that the lesions have not changed size and there are no new ones. He said that you can conclude one of three things: 1) this is bone cancer, or 2) these lesions are reminents of an infection, or 3) that the lesions could be atelectasis, or portions of collapsed lung that are the by-product of surgery and sedation. At the moment these lesions are TOO small for any further testing to reveal what they are. So Dr. Toretsky was happy that there was no further progression of the disease, and felt we should stay on course with the new chemo regimen.

However, he did let me know that eventually if the lesions do not disappear they will need to be removed through surgery. This will be the only definitive way for us to determine what we are dealing with. So that is another hurdle that we may have to deal with in the near future. But I have learned with cancer, you have to appreciate today. So for today, these findings were good. Would I have liked to see the lesions totally gone today, YES, I would have, but I have come to accept that in the grand scheme of things they are not growing or spreading, and this is very good news. I am thankfully for whatever good news comes our way. So all your prayers, hopes, and good wishes were answered today. I am sure God was on overload with Mattie prayers today. I want to thank each and every one of you who e-mailed me. My account was VERY busy today. I thank everyone who thought about us today, and for checking in through the blog.

Dr. Toretsky also examined Mattie today after our meeting. During their conversation together, Mattie revealed Sparky's (Mattie's central line) middle name to Dr. Toretsky. So now, myself, Peter, Dr. Bob, Kathleen, Dr. Synder, Dr. Toretsky and Linda know. The list is growing. In return for Mattie revealing this, Dr. Toretsky shared with Mattie his magic trick. Dr. Toretsky has a trick thumb that lights up and he showed Mattie how he is able to do this. So the two of them had a thing going today about sharing their secrets with one another. Mattie was in rare form and Dr. Toretsky basically said he did not know what I have been doing with Mattie for two weeks since he has been gone from the hospital, but it is working.

I also want to thank Ann for bringing Mattie a series of Muppet Show DVDs. I can't wait to see these with Mattie. What a treat. Thanks also for the banana muffins (yours are one of my favorites!), and of course for tracking down training wheels. I thank all of you out there trying to meet our training wheel demands today. Thank you Anne S. for dropping off a spiderman training wheel set for us too. With my track record, it is good to have two sets.

When we got home from the hospital, Mattie was focused on me putting his training wheels on his bicycle. Well a simple process, took me hours. But I wasn't going to let it go. I was determined to figure out how to put these wheels together. After several hours (I hate to admit), I assembled the wheels. Mattie even took a nap while I was working, I was that slow. After the bike was ready, Mattie insisted on trying it. So I wheelchaired him outside, and then helped him on the bike. He was very scared and afraid he was going to fall. I held him like a human seatbelt, and he peddled a bit. He wanted to get off though and looked a little dejected. When I took him inside, I asked him if there was something he wanted to say, and he just looked at me. He asked how I knew, and I told him, he just looked like he was carrying the world on his shoulders. He was upset that he couldn't ride his bike, but I put a positive spin on the whole thing. I told him it I were him, I wouldn't have been able to get on the bike at all. I told him each time he does it now, it will be easier. So we shall see if he wants to pursue riding again.

We want to thank Theresa D. for a wonderful dinner tonight. Thank you for supporting us through this difficult day and for providing goodies for each of us! We also want to thank Joan Holden, SSSAS' head of school, for calling us today. Joan we appreciate you standing behind us "every step of the way." We are fortunate to be a part of such a strong school community!

I received three e-mails today that I would like to share. The first one is from Debbie, Mattie's art teacher at SSSAS. Debbie is a huge Mattie supporter! Debbie wrote, "FYI I had two classes during this time period when I figured Mattie was inside of the scanner. My heart was so warmed to watch every child clasp their hands over their bowed heads to say a prayer for Mattie. I am begging God to help Mattie. I will check the blog later to see the results." Thank you Debbie and all the children for your special prayers today!

The second e-mail I received today was from Sean Swarner. I first learned about Sean from Karen, my good friend in NY. Then Anne Sterba (a fellow SSSAS mom) contacted me and told me she went to college with Sean. She helped us establish a connection. Sean is the first Cancer Survivor to Summit Everest and he recently won Hawaii's Ironman championship. He is an international speaker and also a great role model for the cancer community. Sean is open to exploring ways to support Mattie, and I appreciate his willingness to get to know us.

The third e-mail is simply fascinating. Some of you may remember in last night's blog that I said I wanted to develop a Lego rent a center in my next life. Well believe it or not, we got an e-mail from the Vice President and Assistant General Counsel at Rent-A-Center. Andrew wrote, "I am set up for a Google alert for internet sites which mention Rent-A-Center, the company I work for. I received a Google alert yesterday because Mattie's blog indicated, in a joking manner, the desire to build a Lego Rent-A-Center. I read the blog, and on behalf of Rent-A-Center, please let Mattie know that I would love to have a Lego Rent-A-Center and will buy it for $1,000 and proudly display it in my office. Please send me the address and I will mail out a check today, and let Mattie know that he can build it only when he has some spare time, and if it only consists of 4 Lego's that will be fine with me. Who knows, maybe he is destined to become an architect. On behalf of Rent-A-Center and myself, please wish him and his family the best of luck. Andrew Trusevich
Vice President and Assistant General Counsel
Rent-A-Center, Inc.
Board Certified: (1) Civil Trial Law; and
(2) Labor and Employment Law, by the
Texas Board of Legal Specialization

Andrew contacted Alison and on behalf of Rent-a-Center, they are making an $1,000 donation to Mattie's fund. Just incredible! I really only stated this in a joking fashion last night, and yet Andrew and his company want to do something that will ultimately help Mattie. Thank you Andrew and Rent-A-Center, this says something to me about your company, since I mention lots of commerical items on the blog in passing, but none of these companies graciously contacted us and want to help a six year old boy with cancer.

Since I know some of you enjoy the songs I post on the blog, I have another one for you tonight. This one captures two feelings. Mattie is one of the people in my life who can turn the world on with his smile, and for me he can take a nothing day and suddenly make it all worthwhile! Some of you may already recognize that line if you were big Mary Tyler Moore show viewers. This was part of her theme song. The second reason I am attaching this link is at the end of the song, Mary Tyler Moore throws her hat up in the sky (like one would do at graduation) signifying the fact that she made it and is happy. Well today, I figuratively throw my hat up in the air. We made it through a difficult day, and will continue on through the next several months of chemo. Thank you all for being there on such a challenging day for us.

http://www.youtube.com/watch?v=u8MWdNG3wsw

Wednesday, January 7, 2009

Wednesday, January 7, 2009



Quote of the day (Thanks Rich!): "We are like tea bags - we don't know our own strength until we're in hot water." Sister Busche

I relate to this quote, because tonight I feel like I am a tea bag, but my bag isn't holding the tea leaves together very well. Clearly Peter and I have one thing on our minds, as I know it is on your minds too. I appreciate all the supportive e-mails that have been coming in today. It is so nice to know that Mattie's community is out there, saying prayers, thinking good thoughts and are behind us as we learn more about Mattie's lung lesions through the CT scan.

Mattie had a productive and at the same time ornery day. He woke up early, which always amazes me how he can do this since he goes to bed at midnight each night. We began the day building puzzles, which seems to be a trend this week. However, in the midst of balancing Mattie today, I also had someone helping me clean our home, I dealt with the hospital bed people (I am happy to report the air mattress is gone from our home as of 11:30am today!), I confirmed Mattie's scan and arrangements for tomorrow, and also had Mattie's weekly physical therapy appointment. It is hard to juggle all these things because Mattie wants my undivided attention throughout the day.

Mattie and I had a lot to talk about today. I wanted to talk him through tomorrow's scan. Ideally I would love for him to do this scan without being totally sedated. It is certainly safer for him, and the recovery time is instantaneous. Whereas, when he gets sedation, he wakes up agitated, crying, and usually hysterical for several hours. It seems silly to put him through the sedation for just a 10 minute procedure. But I also realize I have to balance my expectations, because Mattie gets super scared in these machines, and he has been unable to do CT, Bone Scans, and MRI's without sedation in the past. However, the sedation team and Linda are aware of what we want to try tomorrow, and if a mild anti-anxiety drug doesn't help him, then indeed he will be sedated for the procedure. So we have that to contend with, on top of waiting an ungodly long four hours for the results. I realize this is truly a SHORT period of time, but to a mother waiting for results it will seem like an eternity.

The other issue Mattie and I discussed today was Dan and physical therapy. I told Mattie that Dan was coming over today to play with him. That caught Mattie's attention. I told him to give Dan a chance, and not to just shut down and not listen. I said that if I assessed he did a good job with Dan, that I would do something nice with him this afternoon. I let him choose what the activity would be. What Mattie desperately wanted to do this afternoon was to ride his bicycle with training wheels. I hadn't asked Dr. Bob whether Mattie could do this, but I was planning on being right next to Mattie while he was riding, so I did not think this would be a problem. Since it was raining, I told Mattie he could even ride in our living room and dining room. Now I should note to you that I promised to allow Mattie to do this, assuming all along that I could find his training wheels. I had taken them off in the spring, as I was trying to teach Mattie how to ride a two wheeler bicycle. I couldn't imagine the wheels had gone far, so the deal was set. Mattie was motivated to work with Dan, and we were going to get his body moving this afternoon on his bicycle. I was actually excited about the fact that he wanted to do this.

Before Dan arrived, Alison came over to visit us. Alison was our point person today, and I tasked her with going to CVS to pick up one of Mattie's medications. Alison told me the issue she had in picking up the medication. Our insurance wouldn't cover the cost of Mattie's medicine today. This hasn't been a problem in the past, since our health insurance has covered a good portion of the medication costs. Why not today? Because we purchased the medication today rather than on Friday. According to their records we should not need this prescription refilled until Friday and therefore, insurance wasn't going to cover it. Well our doctor renewed the prescription for us on Monday and she called it in for us. Since we will be away in NY next week, I wanted all of Mattie's medications current and in supply. Silly me. I should know the two day prescription refill rule, don't you think?! I have nothing else to worry about. In addition to Alison running errands, she brought us some pizza, chocolate (of which I already ate a 1/4 of the bag), an adorable cat mug (to remind me of our cat, who is being boarded long term), and a wonderful container of olives (my favorite, almost as much as chocolate!). Thank you Alison for the visit and for helping us today.

Dan came over at 1pm today. Mattie initially was shy, and wasn't sure what games to pick out for both of them to play together. So I went upstairs and picked out Mattie's two favorite games, Piranha Panic and Funny Bunny and brought them back downstairs. At which point I asked Dan whether I needed to participate or not. I wanted to give them the opportunity to work together without my interference, so I went upstairs. Mattie and Dan played together for an hour. They got along well, and Mattie sounded animated. At the end of the session, Mattie showed Dan his trains and also shared with him his folder about Roxana, his adopted sea turtle. Mattie explained to Dan that he tracks Roxana over the Internet and he also showed Dan the wonderful key chains and magnets he got from the Caribbean Conservation Corporation for Christmas. Now I realize today would not constitute therapy, but I personally feel as a mental health therapist, that you can't honestly work with someone (especially someone who is dealing with anxiety) without getting to know the person first. I remember one of my mentors always said the relationship is the key healing component of therapy. That may sound silly, but a healthy and sound relationship with another human being is better than any medication you can buy at a drugstore. I also feel that without establishing this rapport and level of trust, therapy can't be productive. Now I realize I am comparing apples to oranges, physical therapy to mental health therapy, but there is some overlap. Both of us are working with someone who needs help, who is in a fragile state, and needs to regain trust in one's self to find the necessary tools to live a productive life. It is a shame that insurance companies can not see the relevance of time. Instead they want to regulate the length of sessions covered, and clearly when this happens, the therapist has to cut back on something. So the up front rapport and trust building that should occur within therapy turns out to be the first thing that is expendable. We are a society driven by time. Things have to happen yesterday, e-mails need to be returned within the hour, and so forth. So we also expect our physical and mental health problems to be resolved in the same manner. If only it was that simple. I felt that today Mattie and Dan made a positive investment into their therapeutic alliance.

So the question you should be asking yourself is did Mattie ride his bicycle? Well the short answer is NO! Not out of any fault of his own. I searched the house high and low. Took closets apart, looked outside in our shed in the rain, and I still couldn't find the training wheels. Mattie was getting super frustrated with me today. He was wondering how on earth I could promise this if I did not even know where the wheels were. Good point! Won't be making that mistake again. So now I am on a mission to buy training wheels. He won't let me live this one down, and he will be on my case until I purchase these wheels. So that is my next mission, after of course, surviving the scan procedure, and the intensity of the waiting game for the results. It is my hope that Mattie will really ride the bicycle with his training wheels, and I think if he does this it will be a wonderful form of exercise for him.

Mattie was moody for the rest of the afternoon. He was sulking over the training wheels. At first I got irritated. Then I sat down and tried to see his point of view. So I went over to him. He was sitting on the couch with his head in his lap for quite some time. I then told him I understood he was upset, that I promised something that I did not deliver on, but that it wasn't intentional. I told him that I wanted him to have a good time and it was my intention to put the wheels on if I found them. I then asked him if he saw me looking all over the place for them. He said yes. So he then began to see there really wasn't anything else I could do. I think just acknowledging his frustration and disappointment made a big difference in his attitude. Later on this afternoon, after being wiped out from playing and looking for training wheels, we took a break and watched the movie, Wall-E. I have to tell you, I have watched this movie three times already and each time I tune it out. But today, I actually paid attention. Probably because we read the book of Wall-E last night that Mattie's friend, Liliana gave him. Being able to read the story, helped me follow the movie. So today, I watched the movie throughout, and at the end, Mattie turned to me, and said "aren't you glad you saw the whole movie now?" He told me I had to give it a chance. I am learning simple life lessons, but important ones, from my six year old each day. After the movie, Mattie had a visit from JP and then JJ (our resident Jack Russell Terrier). JP brought Mattie Dunkin donuts all the way from Reston, VA. Apparently Reston, VA's store still makes vanilla frosted donuts, because the one we go to in Arlington, VA no longer does. Mattie was thrilled by the sight of the donuts and ate one while JP was talking to us. Then JJ came by and sat down and was watching Mattie build with his Legos. I snapped a picture of the two of them together. They both have a lot of energy and move a lot, so it is hard to get both of them looking at the camera!






We want to thank Rana tonight for a wonderful dinner. We really enjoyed it and it did remind Peter and I of our Friday pizza nights that we used to have with Mattie at Bertucci's. Mattie was playing on the computer tonight while eating, which in a way was perfect. He was playing and we were shoveling food into his mouth. Not a good way to get him to help himself eat, but an excellent way to get calories into his body!


As I sign off for the evening, I ask you to keep us in your thoughts all day tomorrow. I know how anxious all of you are for the results as well. I appreciate you going through this with Peter and I. I can't describe the level of stress this causes us. But when I look back and think about all the things I used to get stressed about, I now laugh. Not that those aren't real stressors, they surely are, but think about it this way, at any given point during a day, someone in the world is probably taking a medical test and awaiting a test result. There is something so harrowing about this, and until I had to experience this myself, I never gave it much thought. I end the blog with some insights that my friend, Charlie, sent me in an e-mail today. God be with Mattie and with us tomorrow.


"Counteracting A Negative Medical Prognosis"

From Kindness: Making a Difference in People's Lives: Formulas, stories, and insights By Zelig Pliskin Printed with Permission of Shaar Press


I heard these stories from my students: I was told that I had only a few days left to live. That was over forty years ago.

Several doctors told me that we would be unable to have children. Fortunately they were wrong.
My doctor told me that I had only one chance in five hundred of overcoming my illness. I think he was being generous by giving me one chance. I used hope and laugh and spent the rest of my life encouraging others to believe in their ability to recover just as I did.


Doctors are humans. And all humans make errors. Those who feel they never make errors are guilty of an extreme error. Doctors save lives and heal. But they are fallible. Doctors have a mandate to heal, not to give up. Many doctors respect this mandate. Some don’t. They can mean well and in their minds don’t want to give false hopes. But a pessimistic prognosis can create discouragement. It is incumbent upon doctors to qualify a negative prognosis. They do have a responsibility to tell someone that a situation is serious and proper medical treatment is warranted. But it is crucial for them to be aware of instances when people did recover even though it might have appeared to be unlikely. The greater a doctor's knowledge of exceptions to the standard, the greater his ability to soften a dire pronouncement.

Hearing and reading about stories of people who have recovered from life-threatening illnesses will supply you with ammunition to fight depressing medical statements. We need to live in reality. But it is a major error to prematurely feel that all hope is lost when there is a valid basis for that hope.

Medical miracles do happen. People who were not given a chance for recovery have recovered. Even those who do not fully recover often live many more fruitful years than an original prognosis predicted.

Recovery and healing can happen with serious medical conditions. All the more so with psychological and psychiatric disorders. Being told, "Your problem is deep-seated and you’ll never live a happy life," can create a self-fulfilling prophecy that can greatly hinder someone’s ability to regain emotional health. Give hope and encouragement when someone has been told, "Nothing can be done."

"Nothing can be done," really means, "At the present with my limited knowledge and abilities I don’t know what I can do to help." It doesn’t mean that no one else can help. And it doesn’t mean that this very person won’t be able to help in the future. And it doesn’t mean that there won’t be spontaneous remission.

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Tuesday, January 6, 2009

Tuesday, January 6, 2009

Quote of the day (Thanks Camille!): " In everyone's life, at some time, our inner fire goes out. It is then burst into flames by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit." ~ Albert Schweitzer

We had a peaceful night of sleep last night mainly because Mattie's IV fluids stopped flowing in the night. I learned this when I woke up at 6am, which explains his quietness and no need to use the bathroom in the middle of the night. In any case, when Peter woke me up this morning, I was in a daze. This was the first night I actually had a dream and remembered it. The irony is in my dream I was on a cruise. Don't get too excited. You had to see the ship I was on! It was an OLD, VERY OLD ship. In fact, in my dream I left our dinner table and decided to check out the ship below the decks. I was so frightened by the instability of the floors and the construction of the ship, that I ran back up to where Peter was. At which point Peter woke me up from my dream, so I have no idea what happened, but it doesn't take a rocket scientist to put this one together. Actually this dream really is very telling of our life here. Things seem happy and grand, but when you scratch the surface there is a lot of instability and peril ... like being on a sinking ship!

Mattie woke up around 8:30am. He was complaining, as he has now for two days, that his ankle, knees, and back hurt him. I suspected yesterday before Mattie had a blood test that his white blood cell count was rising. I remember a good friend of mine describing the pain she was in when she had too many white blood cells in her body after receiving GCSF (the white blood cell growth factor). Well sure enough, I feel that because Mattie's white blood cell level is so high, he is experiencing pain. I am confident the pain will go away soon, so when Mattie told me he was in pain, I wasn't surprised. Helps to have friends who have gone through this before and are willing to share the details with you! Mattie did not want to go downstairs after he woke up. So we spent the morning playing in his room. We did a lot of puzzles until Kathie arrived.

Kathie (Mattie's OT) came to visit Mattie at 11:30am. Kathie has been reading the blog and read my concerns about Mattie not feeding himself. So today Kathie focused on this first. I prepared cheese, ham, and yogurt for Mattie to eat with a fork and spoon. Don't you know this character can use a fork and spoon! He has been holding out on us, which to some extent did not surprise me. This is part of the control issue that is going on here. If he pretends he can't feed himself, he needs more of our one-on-one attention. But another side of Mattie, that Kathie knows well is that Mattie doesn't like to look embarrassed or incompetent. So when she asked him to use a fork or spoon and offered to help him lift his arm, he said NO! He was going to do it himself. Kathie was very proud of Mattie's accomplishments which only inspired him to do more of what she asked. Remember Kathie has a two and a half year relationship with Mattie. She has worked through some challenging issues with Mattie, and she knows that if he assesses he can't do something, he shuts down. In fact, I remember one time Kathie asked Mattie to walk in a straight line, and this simple request sent him into tears and he spent the remainder of their session in the corner of her office. Kathie and I both learned that day, the art of getting Mattie to do therapy without it looking at all like therapy. So on the OT front, Mattie is progressing quite well. After their session, Mattie showed Kathie his electric train that is set up in our living room. Thank you Kathie for a good session!

After Kathie left, Mattie and I played with his trains. He really wanted Linda's Christmas tree back out again to decorate his train scene. So despite my efforts to put Christmas away, out it came today. Mattie and I spent several hours by the train set today. We talked about quarters and the different States in the US represented on the quarters. Mind you we were throwing quarters again at the train cars as they were going around the track. Mattie was playing and eating. It was a good eating day for Mattie, and while eating I showed Mattie some You Tube clips. My lifetime friend, Karen, introduced me to the Muppet show clips on You Tube. I used to love the Muppets, and it is a shame they are no longer on TV. In any case, Mattie has come to love the Muppets too, and he gets a big kick out of the song, "Mah-na-mah-na". Do you remember that?! Harry guy with sun glasses, two pink cows singing "do-doo-do-doo do". I attached a clip of it below in case you want a good laugh. Mattie saw this clip several times today, and then he and I acted it out for most of the afternoon while doing various tasks. You had to see it to understand how funny this was. "Mahna Mahna" from the Muppets Show----http://www.youtube.com/watch?v=QTXyXuqfBLA

In the midst of playing, I was also trying to keep track of the companies who were coming today to pick up Mattie's hospital bed. Mattie refuses to sleep in this bed anymore, and he also doesn't want to sleep in the living room any more. So instead we carry him up the stairs to his bedroom. In fact, he can actually climb some stairs with assistance now. In any case, nothing is simple. One company has to pick up the bed and its frame, and another company has to pick up the special air mattress that was ordered to help Mattie's bed sore. Just trying to keep track of these two companies today, drove me crazy! Something about the rain, trucks, and coming to DC to park, makes for a very bad mix. One company did make it here today. So I am happy to report we are minus one hospital bed in our living room. I am SO thrilled to reclaim the living room back. After the bed disappeared, there were stacks of things everywhere. So I started reorganizing things. I told myself earlier in the day that I wasn't going to do this. I am still not feeling well, and this stuff is taxing. But when I saw that state of disrepair things were in, I couldn't take it. Even Mattie was helping. He helped to straighten out ALL his Lego sets. My new idea in my spare time is to create a Lego rent-a-center! I don't know about you, but you buy these sets, and their novelty runs out after a week. At which point I would like to give the thing back and get a new set for Mattie to play with. Maybe a new venture in my next life. Back to the story. So while I was straightening things out Mattie was building Lego sets. It kept him busy. Things still are not as organized as I would like, but it is a definite improvement. I certainly couldn't have made this much progress if it weren't for Christine and Ellen who came a few weeks ago and purged things for me. Without the purging, I would have had no place to put things!

After the massive clean up job, I sat back down with Mattie and we played more trains. I took a picture of his set up today, which he is very proud of! There are actually Lego structures now added to the scene. A big Lego convertible race car, a yellow Lego house, and a twin prop engine plane.

I want to thank the Pisano family for being on call today in case I needed anything. I appreciate your support, and we want to thank the Keefe family for a wonderful Chinese food dinner. The gingerbread muffins were a huge hit. Mattie devoured one right away! We also love the riddles book, and the cute elephant on the front taking a bath. I hope that inspires Mattie!

This evening Mattie wanted to watch Dora the Explorer's, "Three Kings Day Special." We even printed out the paper crown on the Internet, so he sat and watched it while wearing the king's crown. Three Kings Day is a Christian holiday that celebrates the Biblical story of the three kings who followed the bright star of Bethlehem to bring gifts to the Christ child. In the story of the Bible the three kings, named Melchior, Caspar and Balthazar, brought gifts to the new baby. They brought gifts of gold, frankincense and myrrh. Three Kings Day is also known as The Epiphany. Mattie was glued to the TV for 30 minutes while Peter and I had a chance to eat. I did snap a picture of Mattie with his crown on that I thought captured the moment. Eating for Peter and I in a calm and sensible manner is a thing of the past. While eating, the phone is usually ringing (today's calls were the mattress people and then a courier delivering more medical supplies for Mattie), and it seems like thousands of things need to be done or caught up on during these down times. It is hard to chose what to do first, eat, or all the other things falling by the way side.

We received some wonderful things in the mail today. The first package came from Theresa. Theresa is a former student of mine and the director of guidance counseling at Northwest High School in Maryland. Her students created some beautiful Christmas cards for Mattie. I took a picture of four of the cards, but all of them were lovely and had touching sentiments inside. Thank you Theresa for doing this.

I would also like Sherry B., Cynthia Green, DCMHCA/DCCA/DCSCA, and John and Goli to know Mattie received your mail and donations in our PO Box! Much thanks!

We want to thank Janice and Stephen Babcock of the Poobley Greegy Puppet Theater in Roslindale, MA for the DVD of one of their puppet shows, called the "Dinosaur Show." Apparently Peter visited this theater many times as a boy. We want to thank Jay von Saulfeld for the card he sent Mattie from Costa Rica. Jay adopted a turtle five years ago, and found out about Mattie through the Caribbean Conservation Corporation's holiday newsletter (you will remember that Mattie is tracking a sea turtle by the name of Roxana thanks to the generous gift from his preschool director, Kim). We want to thank Alan Rammer from the Washington Dept. of Fish and Wildlife for all the books, rulers, and other gifts you sent Mattie. That was very thoughtful of you! Lastly, we want to thank Rocio at the Caribbean Conservation Corporation for sending Mattie some candies, newsletters, a 2009 sea turtle calendar, and a big poster with their photos. These are such lovely gifts and we appreciate you all sending things to Mattie through our PO Box.

I have three e-mails I want to share with you tonight. My friend Karen and I practically grew up together. We have known each other since 6th grade. She e-mails me everyday and we usually have some funny e-mail chats at 11pm or midnight. Last night Karen and I were talking about chocolate and which chocolate brands we like best. Karen wrote, "Scharffenberger extra rich milk (that's her favorite!). I once took a class on chocolate at the New School. Scharffenberger taught the class. I know the entire history of chocolate. If you didn't know it, you are saving the world by eating chocolate. The tree needs to grow under the canopy of other trees. They pay people to not burn the rain forest and grow chocolate. See, chocolate is good." Karen's message made me laugh hysterically, because I never look at my chocolate consumption as having beneficial value for others and the world around me. Funny!

The second e-mail if from my friend, Charlie. Charlie is a former student of mine and a retired Lieutenant Colonel in the US Air Force. Charlie wrote, "I just wanted you to know that the military transporters group is praying for Mattie and the results of his scan on Thurs. The list is 175 strong with others who get it forwarded to them. I am sure that God will hear the prayers of so many, both near and far who have been touched by Mattie's story. Be strong of heart and keep the faith as I know you do. There will be many prayers winging their way to heaven in the next 48 hours." Thank you Charlie for getting the word out! I appreciate all this incredible support.

The third e-mail is from the Head Coach of SSSAS' football team. Dave and his family have been incredibly supportive of our family and as he knows, I think he is "big time!" I am even learning sports terminology through all of this. Coach Dave wrote, "Just thinking about you and praying for a great new year one day at a time. I continue to be amazed by Mattie and how he handles everything. The only thing that amazes me as much as that is reading about the two of you and how well you both handle all that comes your way. The apple clearly does not fall far from the tree. The three of you have blessed us all. I really enjoyed looking at the most recent pictures of Mattie’s creations with Legos and boxes as well as the nature stroll. I have to tell you that the picture of Mattie laying on top of Peter on the floor is as good as it gets. What a great picture! Keep hanging in there and know that we will never give up."

I end tonight's blog with a song I like to sing to Mattie, "You and me against the world." Some of you may remember Helen Reddy and her beautiful voice. She and Kermit the Frog (another favorite of mine) are singing this song together. It is ironic, I used to sing this song to Mattie before his illness, but now the song has even more meaning. Funny how cancer does that to your life. Everything is more meaningful and has more finality.

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

Monday, January 5, 2009

Monday, January 5, 2009

Quote of the day (Thanks Charlie!): That which we persist in doing becomes easier - not that the nature of the task has changed, but our ability to do it has increased. ~ Ralph Waldo Emerson

Since Peter had to go back to work today and he also has slept on the floor of Mattie's room for the past 10 nights, I decided to give him a break. In addition to sleeping in the hospital every night that Mattie has been admitted, Peter also has become another nursing expert, and between the two of us we are a regular pair of Florence Nightengales. So last night, I stayed in Mattie's room. Mattie slept very soundly and only got up at 3:30am and 6am to go to the bathroom. Despite how well Mattie did, I did not sleep well. I was worried that I wouldn't hear him if he needed me, which of course makes no sense. After all, I am in the same room as he, but my ears are still clogged and I don't hear as well as usual. I am developing a greater understanding for people with hearing impairments from this congestion. This whole six month ordeal so far has been a lesson in empathy, and I get the whole impact of illness so much better now, when here I thought I understood it quite well before.

This morning Mattie had a smooth morning. He woke up in good spirits. Before he headed to the hospital, I flushed his lines, administered his IV GCSF (the white blood cell growth factor), and of course got him cleaned up and dressed. Mattie had breakfast this morning and then told me what foods he wanted me to pack-up to take to the clinic in case he got hungry. When we got to the clinic, Jenny and Jessie greeted Mattie and immediately engaged him in an art project. They saved for him a lovely cardboard box, and he started strategizing what he was going to transform it into. Mattie decided to make a rattlesnake out of model magic and then created a three floor house for the rattlesnake. Because every good snake needs a house, no?! NOT! He loves these creepy crawling things because he knows it makes me jump, and I am happy to ham it up over his creations. Mattie had his weight, blood pressure, and temperature taken today. Mattie is a solid 41 pounds. It seems to me that he has lost a pound in just a week. So our goal continues to be to encourage him to eat. Mattie met with Dr. Synder today. Mattie is not wild about most doctors (other than Dr. Bob of course!), but he has his own special rapport with Dr. Synder. It is like the meeting of the minds when they interact with each other. It is fun to watch. I find Dr. Synder a very warm, empathetic, and competent doctor. She doesn't have children of her own yet, but she just gets it. She understands my nervousness about Thursday's CT scan, and she spent some time with me just chatting. Interestingly enough, many of you may not know this, but Mattie's central line (AKA "Sparky;" just so we are all on the same page, a central line is a catheter placed into a large vein in the chest. It is used to administer medication or fluids) also has a middle name. But to Mattie this is a secret. He is slowly revealing Sparky's middle name to select people. He told me first, then Peter, then Dr. Bob, then Kathleen (one of his HEM/ONC nurses), and today he told Dr. Synder. I find this just fascinating to whom and how Mattie reveals this information. Of course the condition of Mattie telling you is that you cannot tell anyone else.

Mattie spent some time in the clinic today because he needed an administration of Pentamidine. This is a preventative antibiotic administered to Mattie every three weeks to prevent pneumonia. In the beginning of Mattie's treatment, he was given bactrium, which was an oral antibiotic. He refused to take it, and Dr. Synder recommended Pentamidine as an alternative. Anything through Mattie's central line is always welcomed, compared to taking something orally. The actual administration took about an hour today. While Mattie was getting his antibiotic and working with Jenny and Jessie, I had a lovely lunch thanks to the Keefe family. Thank you Debbie for coming to the hospital to drop off lunch. The chicken soup and hot tea were greatly appreciated. The salad was delicious too! Much thanks! Once the admistration was done, Mattie wanted to pack up and go home, but he had a good time with Jenny and Jessie as always. It seems more like the natural order of things. My radar always goes up when Mattie can't relate to Linda, Jenny, and Jessie. When I got home, I took a picture of Mr. Rattler and his new home. Take note that Mr. Rattler has his own refrigerator and glass table in his home. I think I will need an additional room in our home just to accomodate all of Mattie's boxed creations!

The news on the blood count front is that Mattie is NO longer neutropenic. His absolute neutrophil count was over 10,000 today. Remember it was only 500 on friday (at which point he was considered moderately neutropenic). Peter and I are in unchartered territory today. Previous to his last admission, Mattie never experienced neutropenia where he did not become sick with a fever and needed to be hospitalized. Mind you this makes no sense either. Dr. Synder agreed with my feelings today too, but we both know that nothing is typical with Mattie. In just a few short weeks, Mattie had Etoposide and Ifosfamide, which you may recall left him very sick. He developed neutropenia four days after its adminstration and was then hospitalized for 8 days. Pretty soon there after, Mattie was given Cisplatin and Doxorubicin right before Christmas. These are two drugs he never tolerated well in the past. So in all reality his immune system should be hit pretty hard, and the fact that he did not become ill from his current bout of neutropenia is remarkable. I pray this news is the start of better things to come this week. But I do know that folks are preparing me to hear bad news on Thursday. I guess one has to prepare for this, but in all reality how do you ever prepare for such news about your child? News which could mean that Mattie's cancer has spread more extensively, that current standardized treatment isn't working, etc. I could go on, but you get the picture.

Needless to say, Thursday's CT scan weighs heavily on my mind and Peter's mind. The scan is at 10am. Jey, our favorite CT tech, and Mattie's big brother is now out on paternity leave. So this makes me a little uneasy, since Mattie responds to Jey. I am trying to convince Mattie to try to do the scan without sedation this time. The scan only takes 10 minutes, but to come out of sedation for Mattie can take several hours because of how his body reacts to it. Mattie gets very upset and scared with scans, and Linda and I have learned that if there is a scan, we desperately need Debbi (AKA, our sedation nurse angel). But if we can just give Mattie Versed this time, which is an anti-anxiety medication, and not knock him out completely, the recovery time will be much quicker. So this is my goal as we head into Thursday. I will meet with the doctors on Thursday at 2:30pm to receive the scan's results. A mom at SSSAS' upper school, Kathryn (who is cancer survivor), gave me a special gift that is coming in very useful this week. She brought me back a worry stone from her trip to Sedona, Italy. The premise of the worry stone is "as you hold this stone in your hand, imagine the angel's calm presence surrounding you. Imagine yourself letting go of hurts or worries." The package that the worry stone came in says:

"Give your worries to the angels, it's time to heal your heart. Every day's a new beginning, where love and hope can start. Give your worries to the angels, release your doubt and fear. Trust in God to always be there with angels always near." Thanks Kathryn for this meaningful gift!

Mattie and I had a nice afternoon together. We built puzzles, chatted, played with a slinky, determined which stairs the slinky worked better on, and even took a walk outside. Toward the end of the afternoon, we were playing with Mattie's electric trains, and as they were circling around, we were trying to toss coins into the cargo train car. We were trying to see who could actually get more coins into the car as it was running around the track. He loved that and it kept him busy for a while. We want to thank the Tilch family for a wonderful dinner tonight. Mattie loved the pizza, as did we, and we appreciate the salad, pasta, and desserts. Thank you for your generosity!

On the electronic front, we want to thank Goli, Karen, and Martha for your e-cards and e-mails. I would like to thank my friend, Sara, for sending me the book, "When things fall apart." Sara said it has helped her through difficult times and she hopes it will do the same for me. Clearly the title, captures our cancer world quite well. Thank you Sara! I would like to end tonight's blog with two quick e-mail thoughts that were sent to me today. The first one comes from a colleague of mine. Martha wrote, "Thank you for sending the Mattie blog address. It was just what I needed. I am in Mexico and was having withdrawal without the blog. Hug each other for me and know I am moved and very grateful for Vicki's openness, honesty in revealing her feeling, and enriched in my life and work by the courage of each of you as you travel this journey. Hoping paves the way to coping." The second e-mail comes from my friend, Charlie. Charlie wrote, "If there were an award for motherhood, for determination, for any one of a number of things, you would be the gold medalist. I never cease to be amazed at what you manage to do in spite of everything you face. Mattie is truly blessed to have you as his mother and advocate!"

Sunday, January 4, 2009

Sunday, January 4, 2009

Quote of the day (Thanks Charlie!):

"Any mother could perform the jobs of several air-traffic controllers with ease." ~ Lisa Alther

My friend Charlie sent me this quote today. At first I laughed, because I think being an air traffic controller has got to be one of the most stressful and grueling jobs I can think of. But upon further reflection, I have to say the role of a mom, is also a tough job, but the difference between the air traffic controller and a mom is a mom has signed up for the job 24/7. Factor cancer in this equation and there are just no breaks! Even before Mattie got sick, I always said parenting is the toughest and most humbling job around.

We had a slow day here. Mattie decided to open more of the gifts that he received and that we store in the "Mattie Pile." The Mattie Pile comes in handy various times during a given week! Thank you Dawnee (a friend and former assistant director of RCC) for the mini-helicopter. Mattie loves it, it is just his size. We also want to thank Michelle H. (a friend and fellow board member of GW's Columbian Women Association) for the great DVDs. Mattie doesn't have either "Charlie and the Chocolate Factory" or "Chicken Run." He is excited to watch these. It was like Christmas all over again for Mattie today! He then moved to a bunch of presents our good family friend, Lorraine sent him. Mattie loves the slinky and was very excited to see it go down our stairs. Mattie was particularly interested in the wood model kits and the giant search and find book. Thanks Lorraine this will keep us very busy! Mattie's last present that he opened was from Dan Page (who works with Peter's mom at The Fessenden School). Dan sent Mattie a Star War's lego set. Mattie immediately sat down with Peter and began to put it together. It took them about two hours. But you can see the finished product and the smile on Mattie's face.

Mattie realizes Peter is going back to work tomorrow, so he is enjoying the time he has with him today. He tackled Peter to the floor and then hopped on top of him. I thought it was very cute, so of course I took a picture of their moment together.

Mattie spent a lot of time playing with his air craft
carrier this morning and Peter and Mattie built a dock for this carrier a day or so ago. However, Mattie keeps refining the dock, and its pyramid shape!
We want to thank the Bentsen family for delivering us a wonderful tex-mex lunch of tamales, chili, salad, and other treats. Mattie loved the "magician" Christmas ornament and he loved the rabbit coming out of the magician's hat! Thanks for the wonderful ice cream too!

Later this afternoon, Mattie wanted to go back to Huntley Meadows and walk or I should say stroll through the woods. So we headed back there and got some fresh air for over an hour. We saw lots of birds today, but Mattie was particularly interested in the ducks. I snapped some pictures of our journey. There is something very calming about walking outside, amidst the trees and the water.

Today I received an e-mail from Barbara, my mother-in-law. She asked me a good question. She wanted to know how Mattie could have an absolute neutrophil count of 500 and still be considered neutropenic. Also she wondered if he was neutropenic, then why wasn't he sick and in the hospital? In the past when Mattie became neutropenic he also developed a fever and had to be hospitalized. This is the first time so far, where Mattie is neutropenic and yet feeling fine. So we are journeying a path I am unfamiliar with. In order to understand what neutropenia is, it is important to understand what a neutrophil is! Neutrophils are a type of white blood cell (leukocytes) called granulocytes. Neutrophils kill bacteria/pathogens by engulfing them (phagocytosis). Neutrophils are produced in the bone marrow along with other blood cells. The mature neutrophils leave the bone marrow and enter the blood stream (peripheral blood). A neutrophil has a lifespan in the bloodstream of 6-10 hours.

Neutropenia is a decrease in circulating neutrophils in the peripheral blood. The absolute neutrophil count (ANC) defines neutropenia. ANC is found by multiplying the percentage of bands (immature neutrophils) and neutrophils by the total white blood cell count. The CBC differential count measures the types of white blood cells (WBCs) as a percentage of the total WBC count. To obtain the Absolute count, you multiply the relative value of each type of cell (neutrophils in our case) by the total WBC count. For example, if a person has a total WBC of 6,000 and his differential shows 30% neutrophils, to figure the Absolute Neutrophil Count (ANC) we multiply 6,000 by 30% to arrive at an ANC of 1800.

The severity of neutropenia is categorized as mild with an ANC of 1000-1500 , moderate with an ANC of 500-1000, and severe with an ANC of lower than 500. The risk of bacterial infection is related to the severity and duration of neutropenia. Sources vary on what they consider neutropenia to be. Some textbooks refer to anything below an ANC of 2,000 to be neutropenic and others use an ANC of 1,800. An ANC of 2,000 is considered to be within the normal range, but keep in mind that the average person has an ANC in the 3,000 range. Everyone has a cycle and in most normal folks the ANC doesn't drop below 2,000. Viruses and bacterial infections can affect neutrophil counts in anyone.

There are many types of neutropenia. Cancer patients often have drug induced neutropenia and receive a drug called G-CSF to help boost counts. People who have neutropenia are at risk of infection. When people have an ANC below 500, they are at risk from infection from the bacteria on their own bodies!

So in a nutshell, Mattie's counts indicate that he is moderately neutropenic. Mattie heads back to the Lombardi Clinic on monday for another blood test. So we will determine at this point whether his counts will continue to drop, or if they are rising. If they continue to drop, then it is quite possible that he still could get sick. But right now, he is holding his own. Because he is technically neutropenic, we follow neutropenic precautions, which entail not going out to public areas with crowds, not eating any raw vegetables or fruits, and certainly little contact with other children. In addition to a blood test on monday, Mattie will also be receiving IV antibiotics that he receives on a regular basis to prevent pneumonia. So we shall be in the clinic for a chunk of monday afternoon. Though this may not sound like fun, in all reality, it gets us out of the house, and I always have Jenny and Jessie in the clinic to help engage Mattie and keep him busy. These are resources I don't have at home, and I can assure you, after hours upon hours of playing with Mattie, I NEED a break!

A special thank you to the Emery family for a wonderful Mexican food dinner tonight. It was a "south" of the border meal day for us. Kristin is a RCC mom and friend, and she is also a physical therapist and I have turned to her on several occasions with issues and problems that I see arising in Mattie's treatment. Thank you Kristin for your input, for dinner, and I hope Mattie will be open to meeting with you soon.

We want to thank Karen for her e-card, and we also want to thank Phyllis (a close family friend) for her lovely card and gifts she sent to all of us. Phyllis sent Peter a beautiful silver angel pin and some cologne, to perk him up on our long hospital days. Phyllis sent Mattie some dinosaur shaped soaps, to entice him to take a bath. Phyllis has a sense of humor and is a cancer survivor herself! She sent us two packs of gum, but not just any gum. The gum is entitled, "Cat Butt Gum." Mattie thought this was a riot! The instructions on the back of the gum box are listed below. We thought it was funny considering our situation.

Cat Butt Gum - 8 occasions to chew this gum!
1) When you suddenly need a to change your mood.

2) When somebody yells at you and you don't want to listen.

3) If you are lack of attitude. Note: chew more than one if you need extra attitude!

4) When you need to refuse.

5) When you want to be picky.

6) When you want to be selfish.

7) When you definitely want to say kiss my _ _ _!

8) When entering Day 3 with no sleep, no shower, etc.

Phyllis also sent me a beautiful silver bracelet that I will wear each day along with my hope necklace. Here is what Phyllis wrote, "When I first saw this bracelet, I knew the time would come when someone I knew would need it. I knew for sure that person was you the day I read about you sitting alone with the medical staff to get the results of Mattie's chest scan. How unfair. No one can possibly withstand the onslaught of testing, terror, and exhaustion indefinitely. I know you have a "Hope" necklace, maybe wearing this bracelet will give you some added perspective and serve as a reminder that the enemy you fight is not as powerful as it sometimes seems."

So I end tonight's blog with the message that is engraved on the bracelet and I will continue to reflect on these words. I agree with the sentiments engraved, but there are times I admit that cancer does shatter some of these things for me. "Cancer is so limited... it cannot cripple love.... it cannot shatter hope... it cannot corrode faith... it cannot destroy grace... it cannot kill friendship... it cannot suppress memories... it cannot silence courage... it cannot invade the soul... it cannot steal eternal life... it cannot conquer the spirit."