Saturday, September 13, 2008

Saturday, September 13, 2008

Mattie woke up this morning very excited because his good buddy, Zachary was coming to visit. Zachary and Mattie are like peas and carrots. They just complement each other and have been very close friends for four years. They met each other at RCC, during their first year at the school. As I told Zachary's mom, Katie, today, I was very tentative about the boys playing with each other. Lately (and understandably because of how Mattie is feeling) Mattie has had a hard time warming up to playdates. I think it would have been very difficult if for some reason Mattie and Zachary had a hard to time connecting today. It would have only emphasized just how intensely things are changing in our lives. But instead, today was a testament to friendship. A true friendship is definitely not based upon how you look or how you feel, but more on the bonds, the commonalities, and other factors that are not necessarily quantifiable. I learned a lot from Mattie and Zachary today, and the incredible power and gift of their friendship. It was truly special to see Mattie animated and playing, it was during this playdate that I was actually transported back in time to our happy days at RCC. Thank you Katie and Zachary for bringing this happiness back for us today. Thank you also for a great lunch and all the wonderful gifts. Zachary's handmade box is definitely something we will cherish and store things in. Also we love the Indiana Jones hat! Below you can see Mattie and Zachary posing as Indiana Jones!

Katie did share with me today that Zachary's sister, Alexandra and her girl scout troop plan on volunteering their time at Mattie's upcoming carwash fundraiser on September 20. It is my hope that Mattie will feel well enough to attend a part of this carwash, because I think he will be amazed by all the energy you are generating for him and us.

My parents encouraged me to go out today and get my haircut and my nails done. It was something that never crossed my mind to do, but I agreed with them that maybe that would perk me up. For two hours, it was wonderful to escape everything, and to shut my eyes while at the salon. When I returned home, we had a visit from Caroline Peterson and her mom, Karen. Mattie and Caroline played together, while Karen and I talked. Thank you Karen for all the great books and gifts for Mattie. Your dinner was fantastic, and we all sat down as a family and had a nice meal together. Thank you also for chatting, it meant a lot to me today.

The electronic front, thank you Grace for the fabulous Funny Horse story and Susan, Karen, and Kim for your e-cards. I also received a special e-mail today from Suzie, a friend of a dear neighbor of mine. Suzie is contacting all of her friends and encouraging them to support Mattie and to check out his blog. Thank you Goli for getting the word out! I also want to thank my recent GWU Alexandria cohort of graduate students for wanting to pamper me and Peter with a massage. I indeed have incredible students!

As we head into sunday, we are very cognizant that this will be our last day at home before beginning the second round of chemo on monday. I never knew five days at home could go so quickly!

Friday, September 12, 2008

Friday, September 12, 2008

Mattie woke up early today and came to find me and then jumped into bed with me. We both went back to sleep and he did not stir until 9:15am. Another morning record for him, but I guess when you go to bed at midnight, you are bound to get up later. Mattie's time clock is very confused and thrown off since he has spent time in the hospital.

One of the first things Mattie worked on today, was building a large puzzle map of the world. Thank you Grandma and Granddad for sending this down. Mattie loves it, and we are really getting to understand where certain countries are located. For example, this summer Mattie attended a Spanish Immersion camp at SSSAS. During the camp, they studied about Guatemala. Mattie was very eager to find Guatemala on the puzzle and we chatted about the things he learned from camp. I love this picture, because it looks like Mattie is the center of our world or better yet, he is uniting people all over the world. Which he is literally doing!

Today was a central line changing day. Mattie put up a fight, but he quickly realized it had to get done, and then not only complied, but also helped remove his dressing himself. He is becoming a great assistant. Myself and my parents, took Mattie out to lunch today. This was an all time first. I have kept Mattie pretty isolated from the outside world until today. Basically I think I had it with the isolation, and I don't think it is fair for Mattie. I rationalized taking him out in two ways. One, his white blood cell counts are good, and two, he probably will be isolated for the next two weeks as he deals with the next round of chemo. I also figured if I took him out to a restaurant at 2pm, we would miss the lunch rush. It turned out to be a very positive experience for all of us. Mattie has grown up going to Clyde's at the Mark Center. This restaurant is geographically close to RCC and SSSAS. In any case, we know most of the staff and manager at the restaurant. When the manager heard what was happening with Mattie, he too was visibly upset today. In any case, it was nice to visit a restaurant in person. I know we have been getting all sorts of wonderful foods delivered to us, but somehow being able to walk into a restaurant, made it seem for a brief moment that things were normal and we were in control of our lives. Also it made me feel as if I had the freedom to enjoy what others do on a daily basis.

After lunch we headed back home. I received a call today from Margaret, Mattie's first preschool teacher at RCC. Margaret is committed to Mattie, and wants to tutor him this year, and is willing to work with SSSAS to coordinate a curriculum. This was music to my ears for many reasons. Margaret knows how to capture Mattie's attention, but she also knows how to teach Mattie in a creative and fun way and they have a solid rapport with each other. Which is SO key for Mattie! Thank you Margaret for sharing your gift with us once again.

I received another e-mail today from Liza May, an upper school SSSAS parent. Liza was chatting with me about some of the wonderful ideas her daughter, Katie has for supporting Mattie and his fundraising efforts. Apparently Katie reads Mattie's blog and is inspired by his courage. I am so impressed with Katie and her fellow seniors at SSSAS. I think they are far more mature and have a greater appreciation for the world around them than I did when I was their age. Their efforts and focus warm my heart during these troubling times for us.

We consider ourselves very blessed. We not only had one great dinner tonight, but two. Dawnee (RCC's former assistant director) delivered us an incredible dinner. I am not sure how to thank you for this feast, but we all enjoyed it and your generosity is so appreciated. Also thank you for the great gifts you gave Mattie. I can't wait to play, Guess Who? Our neighbor, JP (the owner of our resident Jack Russell Terrier) invited us over for dinner and basically threw a dinner party in our honor. At the dinner were our neighbors the Weiners, JP's friend Sheila (Associate VP of regulatory affairs at Georgetown University Hospital), and a couple we hadn't met before, Gail and Bob Bado. It was a pleasure to meet Gail, because she is a cancer survivor as well as a school teacher. She gave me some valuable insights about cancer treatment, as well as options for Mattie's in home tutoring. JP cooked a wonderful dinner, and I am very grateful for all the connections JP has made for us.

On the electronic front today, thank you Charlotte (we loved the picture!), Coach Holm (we hope the home game goes well, and Mattie is glad he can bring a smile to your face), Barbsie, Sarah, Annie, and Allen for your e-mails. Thank you Kim, Susan, Karen, and Lorraine for the wonderful e-cards. Mattie really looks forward to checking his e-mail! I leave you tonight with an update about the Caribbean Conservation Corporation. Rocio and I e-mailed back and forth today. We generated a 200 word article today for the upcoming e-newsletter, and will be working on a more indepth article for their Thanksgiving edition newsletter. The Thanksgiving newsletter will reach 7000+ members of their organization. I am just in awe regarding how Mattie's situation is touching others around him. I always knew he was a special boy, right from the beginning. But his courage, humor, and strength during this more difficult time only confirms in my mind the depths of his uniqueness.

Thursday, September 11, 2008

Thursday, September 11, 2008 - The motto for today: "One donut a day and everything will be okay!" (THANK YOU SUSAN S. FOR THIS GREAT E-CARD, it brought great happiness to us today! As you all know Mattie has a thing for donuts now!)

Before I start telling you about our day, I can't help but reflect on what day today is, September 11. I will never forget where I was on September 11, 2001 (I was home preparing a lecture for my class, and also about two months pregnant with Mattie). I am sure you can relate to this feeling... of never forgetting that moment. This is a tragedy of massive proportion, and no matter what is going on in my life, I hope I will always take a moment to pause and reflect on the loss of all the innocent lives that were taken that day. I think just in general this day is filled with great sadness, and now add Mattie's situation to our mix, and well, this makes for a deadly combination.

We met today with Dr. Bob Henshaw, Mattie's surgeon. Bob had patients back to back today, but he made the time to see us because he wanted to check out Mattie's knees and also talk with us about the surgical plan. First and foremost, thank you Ann for playing with Mattie for over an hour while we met with Bob. Ann, has become a good buddy of Mattie's. Clearly our conversation with Bob wouldn't have been appropriate for Mattie. We talked with Bob about the pros and cons of metal expandable prothestics (repiphysis) versus natural bone grafts. Of course as a mom, the natural bone graft appeals to me, because a foreign object wouldn't be placed in Mattie's body (a bone would be taken from one part of the body, such as the leg, and used to replace the arm bone containing the tumor). Also if a bone graft is successful, Mattie would not need another surgery as he got into adulthood (because a natural bone graft would grow with Mattie, unlike an expandable child prosthetic which would need to be replaced with an adult prosthetic).

One comment continues to stick with me today from this meeting. As we were discussing the fact that Mattie would need two protheses (a child one and an adult one) for each of the three major tumor sites, Bob basically said that this was an ideal problem to have, because that would mean that Mattie had survived the cancer and lived into adulthood. This is resonating in my head all day today.... "that is if Mattie lives this long." Not that I did not realize that Mattie could potentially die, but hearing this from a renouned surgeon made it much more real and much more daunting. After the meeting, I cried and was deeply saddened, and I have carried this sadness throughout the day. I realize you can't think this way, but when you think about the amount of pain we are putting Mattie through, you expect there to be a cure.

After the meeting at Washington Hospital Center, we came home and had lunch and then had a visit from Joy Isaccson. Joy is a former RCC parent and a friend. Joy recently heard the news about Mattie and she was truly devastated. So much so, that she came to give me a hug and to tell me how concerned she is for us. She also brought Mattie a wonderful poster sized spiderman coloring set. Joy, it was great to see you today and to reconnect! Thank you for understanding.

We had a 2pm appointment at the Lombardi Center for Mattie's weekly check up with Dr. Toretsky. Jeff spent a great deal of time talking with me and my parents. He answered all of our questions, and could see that something wasn't right with me today. What could be right in the world, if you think your child could die? I appreciate Jeff's honesty, yet infectious optimism, which is very much needed in such a challenging time as this. Mattie had a good exam and got to play with his buddy, Jenny. Below are some pictures from Mattie's visit to the clinic.

Left: Grammie, Mattie, Jenny, and Vicki

Right: Mattie carrying his art project home with him through the hospital hallway! He insisted on carrying it himself.

I want to thank Mirela and Suzanne (from RCC) for stopping by today and delivering a tasty dinner and gifts for Mattie. Your support means a lot to us. In the midst of what I consider a bad day emotionally, there were several bright spots that I want to share with you. I really cling to these bright spots during these times. Every e-mail, card, gift, and visit you make means the world to us. Today I received a lovely e-mail from Julia Lee (a RCC mom). Julia loved my comment last night, when I mentioned what we are learning from Mattie's sea turtle, Roxana. We are learning that fighting osteosarcoma is a marathon and not a sprint. With that, Julia sent me the 13 life lessons from running a marathon. Several of which she directly linked to the cancer marathon we are now running. Thank you Julia, I will turn to this from time to time when I feel like throwing in the towel!

13 Life Lessons from Running My First Marathon (by Garold N. Larson)

1. You can run the marathon.

2. Coming in first doesn’t matter. To be successful you don’t have to have the most or be the best or the fastest - just make it gracefully to the end.

3. Make it through the trial mile. If you can make it through the first mile, you always will feel better during the following miles. This first round of treatments might be seen as your/Mattie's first "trial mile." So hang in there, you're doing a great job so far.

4. Don’t skip the training. There is no way to prep for what you're dealing with. But you and Pete have been amazing in this area with gathering information and research info from wherever you can. And also by letting friends and family help when we can.

5. Cheering really works. We all need cheering from time to time in our lives.

6. We need friends. Good company makes any journey more pleasant.

7. Don’t stop. Sometimes we have a tremendous urge to quit, to give up, to throw in the towel. Having the ability to overcome those urges and keep going makes all the difference in life.

8. Life is a marathon, not a sprint. Ask Roxana!

9. You need a coach. Sometimes others can help show you the way. Mattie's treatment team and everyone on Team Mattie love you all so much!

10. The mind game matters. After all the physical challenges and preparation, much of your success has to do with what goes on in your head. It’s a constant mental battle that must be fought to succeed.

11. We need mile markers. In life, we need short-term goals to help us reach our long-term goals. Each completed round of chemo is a success towards reaching the big goal of remission.

12. The more you do something, the better you get at doing it. Think about the first time you did any hard thing. They were all difficult at first and yet, as time went on and you worked at it every day, it became easier. It may be hard to believe, but think about all the things you can do already since Mattie's diagnosis.

13. Be inspired by others. Others have beat osteosarcoma. You guys will too.

The second bright spot I received today came by e-mail from the Caribbean Conservation Corportation (Roxana's sponsor). You can read the e-mail they sent Mattie, and I am following up with Rocio, because saving sea turtles and also educating others about osteosarcoma are both vital causes.

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Hi Mattie,

My name is Rocio Johnson, and I work for Caribbean Conservation Corporation. I came across your blog today and saw that you adopted Roxana, one of the turtles competing in the Tour de Turtles marathon. I read your story and was very moved by your courage. I was hoping that you would help us write a story for our e-newsletter about you and your family. Not only do we want to show how Roxana is now a part of your family, but I would like to link the story to your blog. This way, new people can learn about ways they can help you. If you are interested, please get in touch with me as soon as you can. The story is scheduled to go out next Tuesday. I hope you are feeling better, and I want to wish you lots of luck. You are a brave little boy. Take care Mattie, and I hope to hear from you soon.

Best regards,

Rocio Johnson, Marketing and Communications Coordinator Caribbean Conservation Corporation 4424 NW 13th St. Suite B-11Gainesville, FL 32609 Phone: 352-373-6441Fax: 352-375-2449 rocio@cccturtle.orghttp://www.cccturtle.org/

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The third bright spot came from The Peterson Family. They sent me a lovely "HOPE" shirt from St. Jude's. You can be assured, I will be wearing it (and my necklace) with pride and I truly hold dear its message. Thank you also for the wonderful St. Jude's shirt for Mattie. He is looking forward to coloring it himself.

Mattie received a special gift from a classmate's grandmother today. Thank you Kazu's grandma. She sent Mattie a wonderful book about a pirate, but the difference was the pirate was Mattie. This is a personalized book. Mattie's picture was on the front cover as well as all throughout the book. I have never seen such a book, but if you want to check out the website, go to http://www.flattenme.com/. Mattie also received his first gift from a cat today. Thank you Brian Boru. For a cat, you certainly know how to pick out great gifts!

The fourth bright spot came from an e-mail we received from Carolyn Schugar. Carolyn is a childhood friend of my sister-in-law, Lisa. Carolyn is a cub scout troop leader. Carolyn heard that Mattie was going to start cub scouts this year, but because of his illness, will not be participating in activities. Carolyn has invited Mattie to join her troop, and is willing to come work with him in any way possible. Thank you Carolyn for such a generous offer and for the wonderful tiger cub t-shirt.

On the electronic front, thank you Julie Nelson (one of my wonderful GW students and now a colleague) and Bunny for your lovely e-mails of support. Bunny we loved seeing a picture of Annie, your dog. Thank you Bob, Kim, Margaret, Lorraine, and Susan for your great e-cards. I leave you tonight with the e-card that Bob Weiman generated for Mattie today (see the link below). Mind you we saw this card after we came home from two doctor appointments. Somehow it was just the right medicine. I thank all of you for sharing this hard day with us and your willingness to stay with us through the long haul.

http://sendables.jibjab.com/view/OeP1HrnEdZ0PQbuG

Wednesday, September 10, 2008

Wednesday, September 10, 2008


Mattie is very excited to be the proud "parent" of a LARGE green sea turtle named Roxana. Thank you Kim (RCC Director) for this great idea! Roxana is satellite tagged and we started tracking her on the computer today. We received her adoption papers in the mail yesterday. Roxana is an adult female green sea turtle encountered nesting on the beach in Tortuguero, Costa Rica in June, 2000 and she is part of the Tour de Turtles marathon. Roxana was named by the Caribbean Conservation Corporation. She measures 101.1 cm in curved carapace (shell) length and is 350 pounds. If you want to see her journey, click on the this link: http://www.tourdeturtles.org/roxana-map.html We are thoroughly enjoying the new addition to our family!

Since Mattie's diagnosis, this was the first day that seemed somewhat normal. Being away from a hospital for an extended period of time, I guess can do that to a person. Mattie now has a new dressing change regimen for his central line. The previous one gave him intense dermatitis. So you may remember from previous blogs that tuesdays were typically shower and dressing changing days, however, the new schedule requires Mattie to have dressing changes on mondays, wednesdays, and fridays. So today was a changing day. Mattie is frightened to take a bath or a shower (perhaps he doesn't like the water beading down on his body, or he is afraid to get Sparky wet, I am not sure), but at least he can be talked into a sponge bath. Mattie did a great job with the dressing change, and even helped take off the old dressing himself. He is a great assistant. But the idea of flushing his central line daily and changing dressings almost every other day seems to be a constant reminder that things are not normal by any sense of the imagination. The hospital staff keeps telling me that Peter and I will come to develop and accept the "new normal" in our lives. Not only do I detest this phrase, but I find it condenscending. There is nothing normal about this, and I think as a parent you learn to adjust because you have no other option. But to consider this adjustment a "new normal" just rubs me the wrong way.

This afternoon, Mattie had a visit from Alex and his mom, Julie. Thank you for the vanilla shake and wonderful apple bread. We enjoyed playing Slamwich, a card game Alex introduced us to today. The kids did a lot of fun building together and chatting, while Julie gave me the opportunity to go upstairs and rest. Sometimes you do not realize just how tired you are until you stop moving. Thank you Julie for this precious gift.

Mattie received a lovely bouquet of fruit today, an edible creation! It was simply beautiful and delicious. I immediately noticed that the fruit was sitting in a pottery bowl, painted like a tennis ball. The tennis ball has great significance for us, since I credit tennis camp for alerting us to Mattie's bone pain. Thank you Team Mattie, for such a lovely and meaningful treat!

We received a phone call and e-mail today from Joan Holden, Head of School for SSSAS. Joan has always been there for us, providing us with encouragement, support and offering to do whatever she and SSSAS can do to help Mattie through the greatest challenge of his life. I believe that a school is reflective of its leadership, and given the groundswell of support from the SSSAS community, I find it of no surprise that its leader, Joan, is right there on the front lines, extending her support. Joan told us that a special prayer was said for Mattie this week in chapel. With that kind of channeling and prayer, Mattie and his parents could not ask for anything more.



I received a lovely e-mail from Bob Weiman today as well. Bob is posting our fundraising flyer around the SSSAS campus and he is also working with Tricia Lyon (the upper school religion teacher and service coordinator) to pull students together to volunteer at the carwash. In addition the upper school basketball varsity coach expressed interest in volunteering to help raise funds. Thank you Bob for advocating for Mattie!



I continue to receive e-mails from friends and family all over the United States telling me the prayer groups you have added Mattie to. We so appreciate this, and I feel that God is answering our prayers by bringing all of us into our lives. We want to thank Dr. Janet Heddesheimer (GW's associate dean in the Graduate School of Education) for adding Mattie to the prayer group at St. Anselms Abbey School.

On the electronic front, thank you Jacky, Charlotte, Charles, Helen, and Mercedes (it is nice to know my GW students are tracking Mattie) for your wonderful e-mails to Mattie, and Karen, Kim, Susan, and Lorraine for your great e-cards. These e-mails and cards brighten up all of our days!
I leave you tonight with a picture Mattie took tonight of JJ, our resident Jack Russell Terrier and then two quotes. JJ makes periodic visits thoroughout the day to check on Mattie. You can see in this picture how JJ is entranced by Mattie's presence.

Lastly, I bumped into my neighbor, Malcolm, today. He said to me that he admires Peter and I because we "live from the inside out, rather than the outside in." Meaning that he admires our priorities and how we have deep convictions that guide us in how we lead our lives and how we relate to others. Thank you Malcolm, no one ever told me that before, and it made a real impression on me. Lastly, Mattie's sea turtle Roxana, has a quote on the bottom of her adoption certificate. It says, "It's a marathon, not a sprint." So appropriate in our battle for Mattie's life, don't you think?

Tuesday, September 9, 2008

Tuesday, September 9, 2008

Peter and I had an appointment today with Nita Siebel. Nita is a well known oncologist, specializing in osteosarcoma. She is the former director of the oncology program at Children's Hospital, but is now at NIH. Because of Mattie's hard weekend, and intense leg pains, I did not feel comfortable leaving the Georgetown Campus today, so only Peter went to the appointment. Peter came back several hours later and briefed me about the very informative and positive meeting he had with Nita. It was wonderful to hear Nita's perspective and we appreciate her willingness to share resources and information. Peter left her office today with contact names and numbers, and the confirmation that we are doing all the right things treatment wise at the moment. Nita also very generously shared her cell phone number with us and is willing to talk with us anytime about Mattie's case.

Mattie wasn't released from the hospital today until around 4pm. The doctors wanted to run another blood test on Mattie to confirm that his methotrexate level was indeed falling to 0.1 or below. So you may ask, how did he spend his long day at the hospital? Well never fear, when Linda, Jenny, and Jessie are around, the answer is very simple. He had a great time. In addition, Ann came to the hospital today and spent several hours with Mattie, while I got some fresh air(okay well maybe humid, moist air - but even that was a welcomed change) today. Ann brought Mattie two vanilla sprinkled dunkin donuts. His all time favorites, and he actually ate both of them! Ann played with Mattie for hours, and when I finally got back in the room, he was totally engaged and happy, a completely different child than what we saw over the weekend. Clearly Mattie made a good friend today, thanks Ann, and thanks for the tasty banana chocolate chip bread!

We met up with Catherine Silver today at the hospital. Catherine is a nurse and she is also assigned to manage Mattie's case. While I was out getting some air, Catherine administered a pediatric quality of life survey to Mattie. Ann was present in the room while Catherine was doing this, and they both told me how funny and entertaining Mattie was while completing the questions. Basically from Mattie's perspective, he doesn't feel like his disease is impacting his physical or emotional self in any detrimental way. In addition, there were some questions that asked him about his social life and if other children treated him differently now or if he had a hard time making friends. With that Catherine said, Mattie laughed. He said, "everyone loves me, I am cute." Catherine said that Mattie said this in the most innocent but truthful way. Catherine showed me Mattie's survey responses, and in all reality I am so happy she administered this survey to him when I wasn't in the room. I wouldn't want to bias his responses. However, I must say I was delighted to see the results. I realize he could have skewed his own results because he was in a good mood when he completed the survey, but I don't think so. I think for the most part, Mattie is very even keeled and is handling this all very well considering.

Later on in the afternoon, Mattie had a visit from Whitney, one of Linda's child life specialist interns. Whitney is also a special young lady, who seems to know how to engage Mattie. We also had the opportunity to get to know, Mary, a new hospital volunteer. Mary wants to become a doctor one day, but she is working in Georgetown's pediatric unit entertaining children to learn how to effectively work with them and their families. I was truly impressed by her as well. At around 3pm today, Dr. Gonzales came into our room beaming and she shared the good news that Mattie could go home. She talked with us for a while, and examined Mattie's legs. Mattie did not break anything, nor are his knees infected. But he does have BIG scabs on his knees from when he fell last week at home. Dr. Gonzales told us that the scabs looked funny and are probably extra sensitive because methotrexate can impact the skin and its ability to heal itself. So this explained a lot, and we realize that Mattie's limping is a direct cause of the scabs on his knees. Dr. Gonzales was truly happy that we could leave and she helped normalized the five week process we just survived and told us that we have been through an awful lot and we are handling it beautifully. She really loves observing Mattie, and she especially loves his art projects.

When we got home, we had a lot of things to unpack and organize. Mattie received 11 packages in the mail today, which thoroughly made his day. Thank you all for your generosity! Mattie had a visit from his puppy pal, JJ as well, and then at 7pm, in walked Mattie's grandparents from Los Angeles. Mattie was thrilled to see Grammie and Pop Pop, and spent the next hour or so playing and chatting. We had dinner together and then started planning our day together for tomorrow. Peter and I are thrilled to have some fresh blood living with us.

We received two lovely e-mails today. Ann sent us a flyer promoting the carwash fundraiser being organized for Mattie on September 20, from 8am to 1pm at the Fairlington United Methodist Church (3900 King Street, Alexandria, VA). I will have to consult with Peter about how to attach the flyer to this blog. So stay tuned. For those of you helping to organize this event and attend this event, thank you in advance.

I also received an e-mail today from Liza May, a SSSAS upper school mom. Though we have never met, she sent a very supportive and empathetic e-mail. She let me know that the seniors at SSSAS are coming up with their own ideas about how to support Mattie. I was truly touched by the level of effort the seniors are making, and I can say in September of 2007, we did not only join a school, but we found a solid and nurturing community. Thank you SSSAS seniors!

Tonight, we had a visit from Carolyn Coker. Carolyn is a friend of ours from RCC. Thank you so much for a delicious dinner, and the very tasty cupcakes. Mattie loved the lasagna. Mattie also loved the the 3-D dragon and knight kit as well as the Hello Wally Book (as any good Bostonian would know, Wally, is the name of the Green Monster at Fenway Park in Boston).

On the electronic front, thank you Grammie (for the animal stories), Barbsie (for the wonderful knock knock jokes!), Abigail (we loved your art work!), and Maria for your e-mails, as well as Kim, Susan, and Karen for your e-cards. We enjoy reading and hearing all of Mattie's e-mails each day. Mattie received an e-mail today from Paul Breakman. Paul is a friend of John Bonds (a friend of Peter's who is pictured on a bicycle at the top left hand side of our blog). Paul joined John on the recent Lance Armstrong Livestrong bike ride in Philadelphia. Paul also dedicated his ride to Mattie. Thank you Paul for your incredible support!

I also want to thank Richie Orlando and Kristin Goodwin for their incredible generosity. They do not know Mattie personally, but both sent Mattie incredible military patches, a beautiful belt buckle from the USS Enterprise (upon which Richie's son is stationed), and an autographed and inscribed picture of Lt. Col. Kristin "Duchess" Goodwin in front of a B2 bomber. I end tonight with part of Kristin's inscription to Mattie, "Never give up on your dreams." How well said, and I would imagine you could guess what our dream would be.

Monday, September 8, 2008

Monday, September 8, 2008

We were looking forward to leaving the hospital today, but it is now 8:30pm, and we have just been told that Mattie's methotrexate levels are still too high to be discharged. Mattie has been hoping to leave the hospital since saturday evening. The perplexing part of this though is his methotrexate numbers keep fluctuating. Normally, the methotrexate level in Mattie's blood is expected to decrease over time, because he is being heavily hydrated and the drug is therefore being excreted from the body. This morning, Mattie's methotrexate level was 0.12. It was our hope that by tonight it would be 0.1 or lower. However, it went up to 0.23. This is the second time in 48 hours that this anomaly has occurred. We can not be discharged from the hospital until his level is at 0.1 or lower. So we wait. Now that may not seem like a big deal, but to a six year old who was hoping to leave the hospital since Saturday, this is devastating. He was very upset tonight, and spent a good part of it crying. Peter and I feel a bit powerless, because we can't understand the fluctuation, and we are not getting a solid explanation for this from our medical team either.

Despite this set back, Mattie had a good day. Linda, Jenny, and Jessie were back, and they seem to know how to bring a smile to his face. Mattie handled x-rays today beautifully. He is getting to know most of the techs at the hospital. There is one tech, Jerrold, who particularly looks out for Mattie. He met Mattie today at the x-ray machine, even though he primarily does ct scans. Mattie's x-ray did not show anything unusual, that would explain his limping. He continues to walk gingerly today, and we are keeping an eye on this. Mattie has an appointment with Dr. Bob on thursday, to assess this leg situation. Mattie visited Jenny and Jessie in the Lombardi Clinic today. He had an absolute ball with them, and he designed his own caterpillar and the caterpillar's home. While Mattie was having fun, Alison came to visit us, brought us lunch, and encouraged us to have lunch outside and helped us forget our troubles for some time. We all ate together, and Alison and I had a chuckle about some of the lighter experiences I am having in the hospital. Thank you Alison for your wonderful sense of humor, and for understanding how I am feeling even when I may not be expressing it too succinctly. Thank you also for the wonderful sensory gifts today and the happy meal. We are all fighting for turns playing with these squishy items!

Later on in the afternoon, Linda came in and together we worked on changing Mattie's dressing of his central line. The former method we used to clean Mattie's central line was causing him to develop dermatitis, so we needed to develop another way, that wouldn't irritate his skin. We were uncertain how Mattie would take to this change, but to our surprise, Mattie pulled off the old dressing himself (mind you it is very sticky and that usually causes him great pain) and he was VERY patient as we walked through the new changing procedure. We were so proud of him, and we were hoping that the reward for this would be his discharge papers.

During the evening, Frank Bires came by and dropped us off dinner from Panera. Much thanks Bires family for taking care of us, and Frank, thank you for walking several laps around the fifth floor with me and Mattie. It was nice to have your company. On the electronic front, thank you Margaret, Kim, Karen, Susan, and Bunny for your great e-cards, and thank you Grammie, Zachary, Rev Rosemary, Goli, Gail, Janie, and Barbsie for your e-mails. All this support is greatly appreciated. Also, thank you Ann for checking in with us each day and your willingness to drop whatever you are doing to help us. Peter and I are quite tired, so we are signing off for now. As Scarlett O'Hara would say, "Tomorrow is another day!"

Sunday, September 7, 2008

Sunday, September, 7, 2008 - I will start out the blog by saying that I have a lot to say today. So I apologize for the long entry, but when the spirit hits me, I seize the moment!

Mattie woke up this morning very edgy. Not very surprising I guess after being cooped up in the hospital since Thursday, and feeling crummy for days. Nonetheless, Peter and I feel like we are living out the movie, "Groundhog Day." Mattie wakes up every morning at 4am, as bright eyed as a full moon. If you haven’t seen Groundhog Day, it is worth renting it because it speaks to how we sometimes all feel about life. We get stuck in a pattern, a rut if you will. However, our challenge in life is how to break free of this daily routine. The routine can make us dull, disinterested, and unappreciative of things we have in our life. I am very motivated to break out of this 4am rising pattern. Though this morning, the reason for Mattie’s early rising was a nurse tech who wanted to take Mattie's blood pressure and temperature. When in the hospital, techs come in at midnight, 4am, and then 8am to take vitals. But there was something about this tech that rubbed both Mattie and I the wrong way this morning. Maybe because she did not want to do her job, but wanted me to do it for her. She watched me as I took his temperature and blood pressure. Nothing any more really surprises me, but I can tell you one thing… you don’t want to tick me off at 4am. After observing the tech, I then spoke to the nurse at 4:45am, and now plan on writing a letter to the nursing supervisor. Again, this brings me back to my point a couple of blogs ago, children desperately need advocates in the hospital. This tech visibly upset Mattie, and it took me two hours to get him back to sleep.

With each day, both Peter and I find ourselves getting more and more tired. It is a physical and mental exhaustion unlike none other that either of us have experienced. I realize Peter is right though, I have to take some time off from the hospital now and then, which is not something a mother can easily do or accept. Reflecting today on our situation, I came to the simple conclusion that Mattie isn’t the only one fighting bone cancer. In fact, as his mother, you might as well have diagnosed me and Peter with bone cancer too, because in many ways what impacts Mattie, directly impacts me and Peter. I may not be getting chemo infused into my body literally, but figuratively it feels this way. As a parent, you deeply feel when your child is upset or in pain. Sometimes in fact this hurt is worse than if it were happening to you. I find myself very teary today, which is not typical for me. I am usually rather composed, but with being more tired, and having to manage Mattie’s roller coaster of emotions, it most certainly takes its toll out on Peter and I.

I would like to tell you about three very meaningful moments in our day today. I opened up my e-mail this morning, and I received an e-mail from Guillermo Delgado, who is the regional director of Latin America Voxiva (Peter’s company), based in Lima, Peru. Guillermo has been following Mattie’s progress from Peru and about a week ago sent Mattie a beautiful model toy sports car (something Mattie is very fond of). In Guillermo’s e-mail today, he mentioned that he is also a musician and songwriter, and he is part of a popular group in Peru called, “The Apple Band Project.” Well “The Apple Band Project,” is going to be releasing its newest song entitled, “My Little Child,” inspired by Guillermo’s 4 year old daughter, Camila. Guillermo attached a sound bite of the song for me to hear. Because he is trying to release it soon, I do not want to attach it to the blog. But one of the lines in the song is, “When I tuck you in at night, and kiss your check and dim the lights, I may see the peace reflected on your face, but then I watch the evening news, full of poverty, crime, and abuse, and I want to ward you off from the disgrace. My little child, I will fight just to give you a world that is fine.”

The song hits home for any parent facing our world today. We as parents worry about what the future will be like for our children. We worry about their safety and happiness, and this song reflects upon the beautiful and peaceful moment we all have in our lives at the end of the day when we watch our children sleeping. In a way they look like angels when they sleep, don’t they? The song brought tears to my eyes because it is so universal, we all can relate to it on so many levels. Guillermo is very concerned about Mattie and wants to raise funds for him. He has graciously offered the following fundraising idea: all the digital sales of the song (downloads) will go to Mattie's fund plus 3% of the sales from physical CDs. Guillermo and his group typically donate their proceeds to a particular cause (such as Unicef and victims of the earthquake in Lima), but now the group decided they want to focus on Mattie. All I can say is what a wonderful way to start off a Sunday morning. This level of generosity, care, and concern moves me in ways that are indescribable. Thank you Guillermo and “The Apple Project.” Guillermo, I played the song to Mattie tonight, and he loved it so much, we listened to it numerous times. He even was dancing to it. After Mattie’s awful day, this was like music therapy! See the pictures below. If you have other albums, please send them to us.

Mid-morning, we had a knock on our door, and in came Olivia Kane. Olivia is a SSSAS parent who I have had the opportunity of volunteering with at SSSAS. Olivia brought Mattie some adorable mini remote control cars that were a big hit. So much so that Mattie built his own racetrack and tunnel in our room for the cars. While Mattie was playing, Olivia and I had an opportunity to chat. She told me that 25 sisters from the Visitation school were praying on a daily basis for Mattie. I was very happy to hear this, because I believe that medicine can only accomplish so much, the rest in part is due to divine intervention. Olivia then started talking with me about our blog, and how she could relate to many of the things I was voicing and sharing, since as moms we naturally share a lot in common. But Olivia shared a bigger gift with me today, one that she may not even be aware of. Olivia said that I have an incredible network and community of friends, which speak volumes about me. She also said that due to Mattie’s illness these sub-communities of people (who may not even have known each other prior to Mattie’s illness) are working together, people are becoming friends, and in the process people are letting their guards down and sharing more about themselves, and in a way are allowing themselves to be more vulnerable, open, and honest with each other. I have to say, if I accomplish nothing more in my mental health career, then I would say I was very successful. Olivia brought tears to my eyes because what a sheer joy it is to hear that others are connecting, working together, and allowing themselves to be real (which can be frightening, yet courageous) with each other. Life is too short to be hiding behind facades in fear that others will judge or evaluate us in a certain way. There aren’t many positives I see from Mattie’s diagnosis, but if such a diagnosis makes others in our lives stop and pause and re-evaluate priorities and how they relate to each other, then to me Mattie’s illness is teaching us all a very powerful life lesson. Thank you Olivia, you lifted up my spirits today and I hope you do connect with Jim G. for us. Thanks for the tasty pumpkin bread too! You gave me food for the body and spirit.

At around 11:30am, Mattie had a special visit from Bob Weiman, or who we affectionately call the “Magic Man.” Bob is the head of Mattie’s lower school, and holds a vital leadership position at SSSAS. However, if you could have seen Bob today, you would have observed that he checked his title at the door, and in walked in a fellow parent, a magician, and someone who was there to help raise Mattie’s spirits, and accepted Mattie despite his sassy and grumpy attitude today. In fact, I even apologized to Bob because Mattie wasn’t behaving very nicely, and at one point in the visit Mattie used one of my LEAST favorite words, when he said he was “bored.” But Bob told me there was nothing to apologize for, and that he understood how Mattie was feeling today. Bob taught Mattie two great new tricks today. One was a scarf trick and the other was a ring trick. We have had the wonderful opportunity to get to know Bob on a personal level, and we learned that he performed this same ring trick for his wife, Sylvia, when he proposed to her. So Peter and I felt like we learned a special trick today, which also meant something significant to Bob. Bob is probably observing too that Peter and I love learning the magic too! Thank you for sharing your morning with us and for telling Mattie that when he is ready he is always welcome at SSSAS. Below is a picture of Bob with Mattie, doing the famous engagement ring trick.

This afternoon, Peter sent me outside to get some fresh air. I was enjoying the sunshine and composing this blog in peace. Then about an hour later, I got a urgent call from Peter. I could hear Mattie screaming out of control in the background. So I packed up my computer, said goodbye to the sunshine, and ran back upstairs. In our room, I found Peter, Mattie, the head of the PICU, and Dr. Shad. Like Mattie’s episode on Friday, we had a similar one this afternoon. He was crying hysterically, rocking, and you couldn’t rationalize with him. There was no punching or hitting though. The unsettling part was there was NO drug interaction to explain this like Friday. So I quickly deduced that either Mattie is dealing with anxiety (which I am not fully buying yet) or that while he was playing on the floor of his room, he twisted his leg the wrong way, and was in terrible pain. My hunch is the latter, but nonetheless, I told Dr. Shad, I was concerned about such a reaction when we are at home, and do not have a medical staff behind me. So she is sending us home with Ativan, just in case. The funny part is I always feel tentative about leaving the room, and today confirmed my fears.

Lorraine, our family friend, came to visit this afternoon while Mattie was having one of these episodes. She changed his mood quickly by showing him a birdhouse she bought him. He was excited because he got to paint it. Thank you Lorraine for coming at just the right time! We also want to thank the Fergusson’s for dinner tonight. The homemade crabcakes and corn salsa were outstanding and Mattie loved the cheese pretzel!

Finally, on the electronic front, thank you Rebecca, Alex, and Barbsie for your e-mails, and Karen, Linda, and Kim for your wonderful e-cards. Thank you Coach Dave for your e-mail as well. Mattie learned today that when the Saints won their football game this weekend that at the end of the game, the team stood up, put their hands together, and on the count to three yelled “Mattie.” Coach Dave said it could be heard all over the stadium. Thanks Dave!

As I sign off, it is 10:15pm, and Mattie appears to be limping on his right leg tonight and may need an x-ray of it tomorrow. His mood has plummeted and at times he lashes out at Peter and I. There are times I feel like we are dealing with two-year-old behavior again. No words, just actions. God give us strength, because this is a test of even the strongest of spirits.