Mattie Miracle 2021 Walk was a $125,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

May 9, 2009

Saturday, May 9, 2009

Saturday, May 9, 2009

Quote of the day: "She never quite leaves her children at home, even when she doesn't take them along." ~Margaret Culkin Banning

Mattie went to bed around 1am. Before he headed to bed, he saw that I was preparing what I was planning on saying at The Mattie March today. I stopped what I was doing and I asked Mattie, if he was addressing the audience at the Walk, what would he be saying? Out of his mouth popped, "Oohh Gahh Boo Gahh!" Karen and I burst out in hysterics. Later he told me that this translated into "I Love You!" Very sweet. Karen and I continued to dialogue about this, and she dared me to deliver Mattie's statement at the Walk today. So I gave this dare some thought! Could I deliver this silly line? Would others find it funny?

This morning, I woke Mattie up and he seemed very excited about his walk! My mom took some pictures of us, and she snapped one of Karen and I.

Peter drove to the Walk ahead of time to try to help folks with the set up. When Mattie arrived, he met a preschool classmate in the parking lot and we walked into the event together. When we arrived, around 100 people were already there. To make a long story short, we estimate that there were around 500 people in attendance today. This was a walk that far exceeded our expectations. We want to sincerely thank Liz Chiaramonte, Walk Chair, Ann Henshaw (Team Mattie Coordinator), and Alison McSlarrow (Team Mattie Media and Communications Coordinator) for their incredible efforts. I realize these ladies haven't had much sleep all this week! We also acknowledge all the amazing volunteers and planning committee members for their hard work. I think what was abundantly evident is that our communities united today to support Mattie and my family. What an amazing gift to receive.

Whitney and Lesley (Linda's former childlife interns) attended the walk today. As many of you know, Whitney has and continues to work for us now on weekends, since she started her full time job. It was wonderful to have their support today!

I will share some other photos captured on my camera today! However, I would like to put a call out to all of you in attendance to send me your photos. It was hard to attend and try to take pictures, and Peter and I landed up not being able to be in all the places possible to capture these special moments!

Right: Ann and Vicki!

Left: Amany and Lorraine (Vicki's dear friends from The George Washington University)

Right: Vicki with Tess (a wonderful Human Services Student) and Carrie (Vicki's teaching assistant). I THANK ALL my students from GW for volunteering their time today and for their support!

Left: Vicki and Anna (Mattie's PT)

Right: Caroline (Mattie's Piano Teacher), Vicki, and Rev. Jim Greenfield (who delivered a beautiful opening prayer, Jim baptized Mattie in July 2002)

Left: The beautiful banner at Mattie's walk! Attendees signed it, and will serve as a great memento of the day.

Right: The crowd seated in the stands while our program was under way. We were fortunate enough to have Rev. Jim Greenfield deliver a prayer, Joan Holden (Head of Mattie's school), Dr. Shad (director of the HEM/ONC practice at Georgetown) and Dr. Bob (Mattie's surgeon) deliver a greeting.

Peter then spoke to the crowd about the importance of fundraising and advocacy for pediatric cancer. After Peter's talk, I acknowledged our amazing communities. In particular we wanted the Georgetown University Hospital HEM/ONC nurses to know how much we appreciated them. Peter and I presented each of them with a fresh Hawaiian orchid lei. It was wonderful to see the nurses beaming.

Left: Mattie with Brandon (left, Mattie's big buddy), Zachary (right, Mattie's trusted friend), and Robbie (holding the umbrella, a wonderful hospital volunteer who Mattie loves spending time with). Robbie and Brandon were LIFESAVERS today. They engaged Mattie, and kept him busy throughout the entire event!

Right: Some of Mattie's nurses wearing their leis. From left to right is Erin, Tricia, Jenn, and Kathleen!

Left: Vicki acknowledging the social support staff at the hospital: Linda Kim (Childlife Specialist), Jenny Padden (Art Therapist), Jessie Masterson (Art Therapist), Anna Fragomeni (Physical Therapist), and Denise Garner (Social Worker)

Right: Everyone walking around the track in honor of Mattie. It was a very powerful force to observe. Mattie had a great time, doing wheelchair races and we can't thank Coach Dave, Robbie, and Brandon for doing numerous laps with Mattie. He LOVED IT!

After the walk on the track, Bob Weiman (Mattie's head of the lower school) performed a wonderful magic show for the kids. Bob's assistant magician (Mattie) also jumped into action. Mattie performed a new trick entitled "peanut booger." It was unfortunate that I missed this performance because I was on the other side of the track talking with other attendees, but Bob tells us that Mattie rose to the occasion and loved it. Thank you Bob for including Mattie and making him feel special today. I think magic has served as a wonderful way to build Mattie's self confidence and it helps him engage with others.
It was hard to say good-bye to folks today. But all wonderful and memorable times go by too fast and come to an end. This was an event of a lifetime, which will carry us through many days to come. We truly believe that the support we receive from all our readers is a true gift, that carries us through some of our very dark days. Thank you! Today's event was a labor of love, and a dedication to a seven year old boy. If we could bottle this positive energy, there is no telling what we could achieve. THANK YOU for making a family very happy and loved today! I loved talking to each and every one of you. In addition, I had the wonderful opportunity to meet the mom of a colleague of Peter's. Her mom lives in Puerto Rico and follows Mattie's story daily. I was truly touched by her level of commitment to Mattie and our story, and she made me feel very appreciated. In addition, I had the opportunity to meet up with a former student of mine. She thanked me for supporting her through the program, as she was balancing full time motherhood. Jessica S., please e-mail me, if you read this, because I would love to follow up with you regarding your gift today.
One thing that I did clearly see though, is that this blog in a way has united our communities together. I noticed that many of our friends knew each other, not because they ever met, but because they have gotten to know about each other through stories on the blog. I was laughing today when I was talking to Charlie and four people turned around and said, "oh that is Charlie!" It just illustrated to me the power of the written word.
Peter and I want to personally acknowledge the donations made by Conklyn's florist to Mattie's walk. Moms left the walk today with some beautiful flowers! In addition, we were so impressed with the food donations that Liz was able to secure for the walk. We also thank all our bakers who contributed to the bake sale!
This evening, Mattie's paternal grandparents visited with him, as well as his Uncle, Aunt, and cousins. Mattie had a great time playing and visiting, and Karen, my parents, and I went out to dinner. It was wonderful to eat in peace, and tonight, we were all starving and very sun burnt. I never expected the sun to shine today, I was prepared for rain. So we all look like lobsters, but somehow the sun shining today seems very symbolic of good things to come!
I would like to share a message I received from my friend, Charlie. Charlie wrote, "What a day Friday was, I feel how disappointed you must be that Mattie has yet another issue with another medication to be added to the mix. While my head says with all the insults to his system it is no real surprise that he has a osteopenia and a fracture of his ankle, my heart says he has already endured far too much and this is just patently unfair. And as a mom my heart goes out to you because I know how I would have done anything to spare my child physical pain including taking it on myself but that just isn't possible. I hope you draw strength and hope from all of us who are at the march today either in person or in spirit. We are sending you our love and prayers for both emotional and spiritual strength as you continue to tread this uncertain road."

I end tonight with a quote Charlie sent me. While this quote is called Recipe for Home, it could be called Recipe for Friendship as well.
One-half cup friendship and add a cup of thoughtfulness. Cream together with a pinch of powdered tenderness, very lightly beaten, in a bowl of loyalty, with a cup of faith, one of hope and one of charity. Be sure to add a spoonful each of singing and ability to laugh at all the little things. Moisten with the sudden tears of heartfelt sympathy. Bake in a good-natured pan, and serve repeatedly. ~ Unknown

May 8, 2009

Friday, May 8, 2009

Friday, May 8, 2009

Quote of the day: "Judge each day not by its harvest, but by the seeds you plant." ~ Anonymous

One day away from the March for a Mattie Miracle! I can't believe this day is almost here. Back in the Fall, I mentioned to Ann that I wanted to have a walk for Mattie, but I had no idea there would be such momentum behind this event. You have already exceeded my expectations. We look forward to seeing you there, and for those who can't be there with us, we know you are there in spirit.

I called Georgetown today to make a x-ray appointment for Mattie. Catherine, our case manager, helped me secure a prescription for a x-ray, and I contacted Linda immediately. Linda always knows how to get things done. Linda contacted Theresa, the x-ray tech. So Theresa was expecting Mattie. Linda met Mattie in clinic, and promised him a wonderful remote control car for his bravery. Mattie rose to the occasion. What I was happy about was Dr. Myers, the oncologist in the practice today, ordered a script for both an arm x-ray and a right foot x-ray. I was thrilled because to me, something is very wrong with Mattie's right foot. He can't put any pressure on it, and can't stand on two legs. So right now, you can't touch him on his left arm, and he can't stand. I assure you it is like mission impossible transferring him from one place to another, and today my back is killing me. Mattie isn't heavy per se, but when you move him for everything he does, and have to lug the wheelchair around, it wears on you after a while.

After the x-ray was over, Linda, Karen, and I took Mattie back to clinic to wait for the results. Mattie received a wonderful remote control Jeep of his choice. He was very excited, and opened it up in clinic. Linda ran around finding batteries for this Jeep, and when she returned she brought Robbie, a wonderful volunteer and friend of Brandon, with her. Robbie, Mattie, and I did several races in the clinic today. Even the Jeep apparently can move faster than me! Robbie is delightful, and I am so happy he is connecting with Mattie, and will be coming to the Walk tomorrow.

We waited quite a while in the clinic for the results, but Dr. Myers was very busy today, and I decided at 2:30pm to leave and left my cell phone number for the doctor to call me with the results. However, the more I waited the more I worried that something was wrong. So here is the story. Mattie's left arm is fine from a physical standpoint, so I imagine his pain is muscular. The issue lies with the right leg. Mattie has developed Osteopenia. Osteopenia refers to bone mineral density (BMD) that is lower than normal peak BMD but not low enough to be classified as osteoporosis. Bone mineral density is a measurement of the level of minerals in the bones, which indicates how dense and strong they are. If your BMD is low compared to normal peak BMD, you are said to have osteopenia. Having osteopenia means there is a greater risk that, as time passes, you may develop BMD that is very low compared to normal, known as osteoporosis. Mattie will be receiving some sort of supplement once a month to address this issue. The second issue is it appears that Mattie may have a fracture in his ankle. Mattie said that he hurt his ankle during physical therapy on Wednesday. This registered with Anna and myself, so when Mattie complained of pain, I was already clued in that there was a problem. The real test was Mattie actually consumed Tylenol. That doesn't happen unless he is having a real issue. So today, I just about had it. I am worn out from transferring Mattie, and to me there is no end in sight to this. So what has appeared to be a temporary disability, to me is becoming a prolonged one. I also guess a part of me hoped that Mattie would be able to walk by his March, so a part of me is just disappointed.

We took Mattie out to lunch today and he had a good time chatting, eating, and building at lunch. I am happy he can enjoy this normal activity that we used to do. I am also happy to report that the Karo syrup and the Prevacid seems to be working. Mattie is no longer complaining of intense stomach pain! After lunch, Mattie went outside the restaurant to feed the fish in the pond. He loves doing this and watching the fish!

We headed home after a late lunch, and we all played with Mattie's new race track. In addition, Linda's Jeep was the hot item for today. Mattie used the Jeep to knock down his Lego creations. I tried to get an action shot! As the evening went on, Karen continued to play with Mattie. She played race track with him, played a Scooby Doo interactive game, and even read some wonderful pop up books, such as Birdscapes (which is an outstanding pop up book Karen's mom gave Mattie, the bird lover). Karen has been a lifesaver, because I am on overload. I am tired physically and mentally, and I just don't have the energy to play with Mattie tonight.

Peter has had a busy, but energizing day at Ann's house, running chores and helping with the coordination of Mattie's walk on Saturday. When Peter got home tonight, I enjoyed hearing all the details. I am in amazement by what these marvelous volunteers have been able to accomplish. Ann even had a lady from her mom's nursing home helping with the plans today. So it was a great day for people of all ages.

As we head into Saturday and Mattie's walk, I have no idea what to expect. I also have no idea how Mattie will take all this attention. Mattie will either rise to the occasion or be totally overwhelmed and disengaged, since Mattie is usually all or nothing. It is my hope that others will understand that how ever he reactions, that on some level he is grateful. But I can't deny that this cancer experience has changed how he interacts with people. Fortunately I know Mattie will also have the support of Linda, Jenny, Jessie, Anna, Brandon, and Robbie tomorrow. These are people who are used to helping Mattie through difficult transitions. As for myself, I have planned conferences in the past and understand the excitement of hosting such an event. But somehow the personal nature of Mattie's Walk makes tomorrow seem in a way overwhelming. One thing is for certain though, it seems impossible to know how to thank all those involved with the planning of this event. It is a labor of love!

We would like to thank the Brandt family for a wonderful dinner tonight from our favorite Chinese restaurant. Thank you for your constant support.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "You certainly have planted the seeds of cancer awareness in a significant audience now. I hope that those seeds sprout and produce more funding and support for childhood cancers especially osteosarcoma. I was very impressed with the interview; I thought you and Peter did a great job of presenting the issues with both clarity and passion. I hope we have some sunshine for the march tomorrow or at least, no rain to dampen our parade.”

The second message is from our friend and fellow SSSAS parent, Tad. Tad wrote, "I am proud to know you and Pete and be considered your friend. You honor all of those of us who now fight or have battled cancer by getting the word out and sharing your experience in so many ways. These efforts will reverberate with far more effect than we perhaps sense now. If your blog, your daily caring and speaking about these issues cause even one parent, caregiver, friend or family member to pause at one child's wince and decide to get it checked, and this obtains for the child needed early cancer intervention and care, it is worth more grace and honor than most of our fellow humans can claim in their lifetimes."

May 7, 2009

Thursday, May 7, 2009

Thursday, May 7, 2009

Quote of the day: "We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop." ~ Mother Teresa

The COUNTDOWN is TWO days from the March for a Mattie Miracle! We have around 300 registrations! Thank you for the contributions and all the support! We thank all our volunteers who are working extremely hard to make this day a success!

Before Mattie headed to bed last night, he slowly slid down from the couch onto the floor to play with his Legos. Some how when he did this, he hurt his left shoulder. This is reminiscent of the last time Mattie slid off his wheelchair. In any case, I called Dr. Bob, and Mattie is headed back to Georgetown Hospital on Friday to take an x-ray. Mattie had a hard time going to sleep last night because of the pain in his shoulder. So I resorted to Tylenol and Mattie resorted to taking it. Which gives you some understanding for Mattie's level of pain. This morning Mattie also reported that his right ankle was hurting him and he refuses to put pressure on his foot.

Mattie slept in late. This was amazing because they were doing construction on our outside terrace again. There was a drill that was making a racket, and the workmen were talking loudly. Yet it did not disturb Mattie's sleep at all! I decided by 11am though that I would have to wake Mattie up for his television appearance. Mattie seemed excited for what was going to happen and cooperated as he was getting dressed.

Alison, Mattie's media and communications coordinator and our friend, came over today to support us for this interview. She brought Mattie some of his favorite frosted donuts! I believe that if today's interview went in the wrong direction, Alison would have immediately stepped in. It is great to have a friend who can competently and effectively do this. Thank you Alison for spending part of your day with us, and supporting us and helping us to secure this advocacy effort.

At noon, Peggy Fox (Digital Correspondent for Channel 9 News) and Michael Trammell (camera man), came over to interview Mattie. They were both lovely and made us feel very comfortable. They really tried very hard to engage Mattie and got down to his level on the floor and asked him about his Lego sets. However, I think the whole set up and camera was a bit intimidating to Mattie. Mattie has been through so much already, that perhaps this was too much for him. He had moments where he was engaging, but overall, anything these days which doesn't involve sheer play, seems to irritate Mattie. Peggy asked Mattie for some comments about his illness, but Mattie did not answer them, and instead continued talking about his suspension bridge. I was a little saddened by the fact that Mattie did not talk with Peggy, because he usually has so much to say. I really wanted the public to get to see the witty and lively side of Mattie. But one thing I learned is that you can't control Mattie or have him do things on command.

Peter then brought Mattie upstairs to play with my parents. Mattie enjoyed his time with them, while Peggy interviewed Peter and I. I thought that the interview was a great experience, and it was wonderful to watch Peggy as she prepared to talk in front of the camera. Peggy and Michael were a great team, and it was very easy to talk with both of them. I really felt as if they were moved by Mattie's story. For those of you who were unable to see the News tonight, I attached the link to Mattie's story which aired on DC's channel 9 during the 5pm news.

After the interview was over, we gave Peggy and Michael, t-shirts and bracelets for Mattie's walk on Saturday. We then said our good-byes, and also said good-bye to Alison, who we greatly appreciated staying the whole time! We then took Mattie out to lunch. Mattie has been very excited to go out to lunch for a long time. We wanted to reward him for doing a good job today. Transporting Mattie today was DIFFICULT. His ankle and arm hurt him, which made it virtually impossible to transfer him in and out of the car. Also we had torrential rain at times, which made getting the wheelchair out of the car challenging. However, Mattie ate very well at lunch. He ate more at lunch than I have seen him eat in a whole week. He is enjoying his time with my parents, and we played a wonderful round of I Spy at lunch! After lunch, we went to the toy store. I have promised Mattie for the longest time that I would take him to the toy store to pick out a toy of his choice. He selected a car track. I am just happy that Peter was around to help set it up, because it wasn't easy!

When we arrived home from lunch and the toy store, we met up with Peter, who picked up Karen (my lifelong friend from NY who came into town for the walk) at the train station. Karen and I have known each other since 6th grade. When we all got inside, we watched the video tape of the 5 o'clock news. We all loved it, and Mattie was glued to the videotape. He enjoyed seeing himself and his suspension bridge on TV. I was thrilled to see him smile. What a great smile (but I know I am biased).

My dad and I handled all of the laundry we had to do, and my mom and Karen had a great time checking out the News website with Mattie's story. Mattie is having a good time getting reacquainted with Karen. They did connect the dots and cars together. Mattie also introduced Karen to a show on the TV channel Noggin. We were all laughing hysterically about the show.

We want to thank the Arends family for a lovely dinner. I appreciate Karen cooking the pasta tonight for us. We enjoyed sitting down as a family, and I was happy to see Mattie eating. As I write this blog, Peter and Karen are outside walking with Mattie so he can get some fresh air. Mind you it is 11pm. It is going to be another long night! What I would give for my former life, which entailed not waking up every two hours and having a very sick child. It is my hope that our story makes you pause each day and say, Thank God, I am healthy and so are my children.

I would like to end tonight's posting with three beautiful messages I received today. The first message is from my friend, Charlie. Charlie wrote, "Full day on Wed for both you and Mattie. I am glad the cast is off and he can begin work on fully using his leg again. The race pictures are great and the racers all deserve a medal. Mattie's tile is wonderful and much better than I could have created. Mattie is well on his way to redecorating the clinic all by himself--his fifth tile--WOW. That is quite an accomplishment but also a statement of just how long you have already been in the fight. I hope you got some sleep last night although I suspect that if things went as usual you were up and down all night with bathroom breaks. I can't wait to hear how the interview with Channel 9 goes and like everyone else I look forward to watching you on TV. Mattie (and you and Peter) are definitely the stars of this show although all of us wish that the reason for it was a more positive one. You've done a great job in making something so awful a part of daily communication in a lot of homes. I think that as well as raising awareness you've also helped give us all a renewed appreciation for what is really important in life."

The second message is from Mary D. Mary is Mattie's technology teacher at SSSAS, and a delightful and empathetic human being. Mary wrote, "I read Mattie’s blog everyday and pray for love, strength and hope for your family. You journey reminds me to continue to seek God and endure my struggles rather than blame him for my hardships. You have been amazing throughout everything. Your strength and drive continue on regardless of the situation. You truly are a hero. Stay strong."

The final message is from Sarah Marshall. Sarah Marshall is one of Mattie's HEM/ONC nurses at Georgetown. Sarah Marshall is a cancer survivor herself, and a phenomenal human person. I am so happy my family has had the privilege to get to know her. Sarah Marshall wrote, "Hi Peter, Vicki, and of course, Mattie, just wanted to write you all a quick note to tell you all that I am thinking of you all constantly and especially this weekend for the walk. unfortunately, I am working Friday night, Saturday night and Sunday night so I am not sure if I will be able to make it but I am going to do everything I can to make it out at least for a little bit! I am glad Mattie got to go home yesterday and also glad I got to see yall for a quick visit. it always makes my day to see any of the Brown family. I know I have told you all this before, but i just cannot tell you how much I have loved getting to know your family over the past 9 months. Mattie is truly one of the strongest people I have come to know in my life. it is amazing how happy just seeing Mattie and both of you makes me. even when Mattie is not feeling his best, just being around him makes me appreciate life and family more. You two are the best parents and I know that you don't hear that enough. What you do for Mattie is so admirable and he is lucky to have such relentless support. I know first hand how crucial family is to fighting childhood cancer. Please know that your family is always in my thoughts and prayers."

May 6, 2009

Wednesday, May 6, 2009

Wednesday, May 6, 2009

Quote of the day: "When nothing seems to help, I go and look at a stonecutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred and first blow it will split in two, and I know it was not that last blow that did it, but all that had gone before." ~ Jacob A. Riis

Three days until the March for a Mattie Miracle. Peter tells me that we have over 250 registrations as of today! Thank you for supporting Mattie and this walk. Your participation, donations, and volunteering at the walk are deeply appreciated

Mattie did not go to sleep until 2am. Mattie and I were able to finish painting his fifth clinic ceiling tile. Check it out, who says Halloween is only in October?!

It was a long night and at 4am, Mattie woke up to use the bathroom. His nurse was drawing blood at that time, and she had to stop the process because Mattie couldn't wait. In the process of stopping the blood draw, she also stopped his IV fluids. The IV pump just kept beeping until she came back in to reset it. Which wasn't long per se, but some how hearing such noises at 4am seems more daunting and rings through your head. Our morning started very early because Dr. Bob came at 7:30am to take Mattie's cast off. At first, Mattie stayed asleep, even through the racket that the cast saw was making. However, as the process continued Mattie was wide awake and engaged in the process. I have never worn a cast, but clearly it must be a strange feeling when it comes off. In addition, Mattie's skin appears to be SUPER sensitive to the touch. He would not allow me to wash his leg (which Dr. Bob said would be a good idea and would relieve the itching!), and after Bob left, Mattie became very upset, did a lot of crying, and was very tentative about his leg. It is yet another part of the adjustment process for Mattie as he learns to use his reconstructed limbs. Mattie was happy that Dr. Bob preserved his cast, and today I snapped a picture of Mattie with his "third" leg!

Mattie had a wonderful visit this morning from Jenny and Jessie. They admired his Haunted House tile and helped us sketch a roller coaster scene on Mattie's sixth ceiling tile. They even helped Mattie begin to color in the tile, but once they left, Mattie got upset and we had to put the paints away. Mattie at times gets frustrated with his perceived lack of physical abilities, and when this happens, it is hard to rationalize with him. So I find the need to reset and play with something else.

Jenny also started off our day with a wonderful cape she made for Mattie. The cape says, Super Mattie! I love the face! Jenny captured the essence of Mattie's story book character that he created last week. Outstanding! It is my hope that Mattie will bring the cape to the walk this weekend.

I knew Mattie's doctors were going to release him from the hospital today, but I did not feel good about leaving with Mattie's stomach pains (he needed several dosages of morphine on Tuesday). Dr. Toretsky ordered an x-ray today of Mattie's stomach. I asked Katie, Mattie's wonderful HEM/ONC nurse, what the doctor was trying to rule out. Katie said that they needed to rule out a more serious problem, and perhaps even a tumor. Though Dr. Toretsky truly felt that Mattie was developing an ulcer, which of course is very painful. But I am happy this was pursued further today. At 11am, Linda came down with me to the radiology department so Mattie could get an x-ray. Mattie was grumpy and not very compliant, but Linda promised to take Mattie and I to the hospital gift store after the test so that Mattie could pick out a treat. I had NEVER been to the hospital gift store, so this was an experience for both of us. Mattie did just fine in the x-ray, but I have learned not to take testing for granted. I now prepare to hear the worst. Fortunately one of Mattie's HEM/ONC residents found me early on in the day to tell me she saw NOTHING alarming. Thank God!

When Mattie went to the gift store, he selected a toy metal car and a special stuffed animal, a cat. But this cat looks very real. Mattie loved petting this cat, and had Lynx (the name Mattie gave the cat) sit on his lap as he rolled down the hallways. Mattie wanted to trick people into thinking this was a real cat. You can see for yourself in this picture, that Lynx indeed looks quite real. Linda always knows how to bring a smile to Mattie's face, and if you think this is easy, you need to spend an hour or so with Mattie when he is grumpy.

Linda spent a great deal of time today with Mattie playing.
My Dad even joined Linda and Mattie in the playroom and got animated over building a special cat box for Lynx.

I truly needed a break today from the PICU. I am thoroughly worn out and without sleep, I too am getting snappy and grumpy. I can hear myself talking to others and I know I am delivering information in a not so pleasant manner, but hopefully they understand the great deal of stress Peter and I live under. I had the opportunity to eat lunch on campus with my parents for over an hour. While I was taking a break, Linda and Mattie were busy playing. When we arrived back at the PICU, I did not see Mattie in his room or playroom. Where was he? Doing physical therapy. He had Linda, Katie (Mattie's nurse), and Jenn (a new nurse training under Katie) participating in the session with Anna. I then got involved and lots of good racing fun unfolded.

There was racing by foot (without the walker, or using the "mom" walker) and a wheelchair/wagon race. This was a first for Linda! We all had a great time, and Mattie was able to move his body.

Left: We knocked Linda out of the way, so Mattie would get ahead in the race!
Right: Check out Linda in a Wagon! What a race this was.

After physical therapy, I met with Dr. Toretsky who let me know that Mattie has a bowel obstruction, which may help to explain his pain. So the doctors wanted to give Mattie a lot of noxious laxatives (I know, because I smelled and tasted them!) to help him have a bowel movement, but I know Mattie. He would refuse. So when I got home tonight, I gave him a tablespoon full of Karo syrup, and within 30 minutes, he went to the bathroom. I will continue to give him Karo syrup until his system is significantly flushed out. In addition, Mattie is now taking Prevacid to help aid his stomach if he indeed has an ulcer.

Peter met us at the hospital, and we packed up the car, and headed home. Mattie fell asleep in the car, and in fact, remained asleep for over an hour on our couch when we got home. That was actually very helpful for two reasons. The first was we needed to unpack, but secondly, I just found out that a reporter from Channel 9 News is coming to interview Peter, Mattie, and I tomorrow at home. She is doing a human interest story for the news and Mother's day, and this will provide a wonderful opportunity to enhance the public's awareness of osteosarcoma. This is one of Peter's main missions and passions, and though I am deeply entrenched in Mattie's day to day care, I do appreciate Peter's bigger picture as well. In order to get ready for this interview, I felt compelled to reorganize some things in our living space. Not sure how successful I was, but at least I was productive. We have explained this interview to Mattie, and he seems excited.

We want to thank Gibby Earnest, Mattie's librarian, for a lovely dinner tonight. Mattie loved the watermelon!

I would like to share three e-mails with you tonight. The first e-mail if from my friend, Charlie. Charlie wrote, "Sounds like Monday night was another rough one. I am glad you were able to get Mattie quick assistance and pain relief. I just wish that when Mattie decides to collapse and sleep that you could grab some sleep as well. Your exhaustion comes through the blog so clearly. All these decisions are so difficult and there is just no clear right or wrong to any of them. All I can say is get the best advice you can and then follow your instincts as a mom and dad; rarely will that lead you astray. I am so glad everything for the march is coming together well for Saturday; many thanks to all the volunteers who have already put so many hours into the planning and preparation for this--I know it will be a great success!"

The second e-mail if from a friend of Lisa's, my sister-in-law. Lesley wrote, "It is so wonderful to see your family and friends coming together for Mattie's walk. I continue to follow the blog and fall in love with Mattie. He is so brave, determined, and mature. Even when he has his "grumpy" moments, we are reminded that he is a child and he also has breaking points....his tolerance is greater than most adults. You are succeeding is raising awareness for how horrific cancer is for a family and you have exposed this world to many. I hope Mattie is able to be at the walk and see the outpouring of love for your family. I wish you a beautiful Mother's Day. You have taught me this year how to truly parent. I am a better mother because of you."

The final e-mail is from my friend, Tanja. Tanja wrote, "You guys are my heroes! It amazes me day in day out how you can function and make such informed and critical decisions about Mattie's treatment. I know the decision of the pending lung surgery is a really hard one to make. But I am sure that you and Peter will make the right one. You have proven yourself over and over again that you are always making the right choices regarding Mattie's care. Keep doing what you have been doing. I know it is not easy to see your child in constant pain and discomfort. In addition the uncertainty of which turns and twists Mattie's illness will take on his way to recover are not easy to deal with, too. However, Mattie is such a warrior! He keeps on fighting! One of my colleagues told me just a few days ago that her sister had some major cancer surgeries and is currently undergoing chemo and radiation treatments. What struck me during our conversation was her strong believe, that one has to think positive always. That the mind can overcome anything, even a life-threatening illness. This brings me back to Mattie. He is so strong willed, I can see it in him every time I play with him and it shines through your words in the blog. While his determination and stubbornness can be exhausting and insulting, these essential characteristics are his greatest companions (or wing men). He is so determined and convinced to beat his disease! Katharina is a big Harry Potter fan and not a day goes bye when she does not talk about a scene or words from Harry Potter. Every time she mentions Harry, I think of Mattie - because just as Harry, I so strongly believe that Mattie will be the Boy who lived!!!!"

May 5, 2009

Tuesday, May 5, 2009

Tuesday, May 5, 2009

Quote of the day: "The brick walls are not there to keep us out; the brick walls are there to give us a chance to show how badly we want something." ~Randy Pausch

It is four days until the March for a Mattie Miracle. The registrations and contributions continue to come in and we are in awe of the outpouring of support for Mattie. I connected with Ann today, and Team Mattie is working extremely hard at sorting t-shirts and organizing items for the walk. Ann went into the classrooms today at St. Stephen's/St. Agnes school and she and the kids designed posters for Mattie's walk. Here is an example below! I think the kids did a great job coloring these posters!

Mattie went to bed around midnight on Monday. Before Mattie went to bed, we played several rounds of Candyland and also the game, Trouble. However, the question you may be asking yourself, is how did Mattie take to the fact that he was scheduled to see a pediatric surgeon today about his lungs? I realize I need to talk with Mattie in stages about his upcoming lung surgery. So in Monday's conversation, I reminded Mattie that he took scans back in March. I explained that in the scans they found something, but we are not sure what it is yet. Which is why we were headed to see the doctor at Children's Hospital. I kept it simple, and he handled this very well. I figured telling him he needed surgery and giving him the whole picture now, wouldn't be helpful. In some ways, I think Mattie handles the situation in a rather matter of fact and brave manner, which makes it a lot easier as a parent to handle. However, with Mattie he processes things, and will soon begin to ask questions.

Mattie had a restless night of sleep. At 4:30am, Mattie woke up to go to the bathroom. At which point he was screaming with a stomach pain. However, the screaming seemed more intense than his usual nausea. I then felt his head, and he was very hot to the touch. So I grabbed the thermometer, and found out that Mattie had an 102 fever. Mattie was very upset, and he did not want me to leave his side, but I knew I had to call the doctor. So I went to wake Peter up and he sat with Mattie while I called the hospital. Dr. Toretsky called back within minutes, and told me to take Mattie to the PICU as soon as possible. I was a bit disoriented, but I quickly put on clothes and packed things up. Somehow this whole morning was quite stressful for Peter and I, especially since Mattie was screaming all the way to the hospital and into his PICU room until he received demerol. Mattie did not fight us though, since I think he was eager to receive medical help.

Once in his PICU room, blood tests were run, he was examined, and he was administered demerol. The demerol helped with his intense stomach pain instantly. Mattie was then put on antibiotics and within a couple of hours his fever went away. Mattie also needed a blood transfusion today since his hemoglobin level was very low. Mattie slept until 11:30am, and then my parents came to visit and Mattie woke up. He played with them for several hours, doing a pirate puzzle and then designing pirate gold coins out of model magic. He had a good time doing this and even Katie, Mattie's wonderful HEM/ONC nurse, joined in while she was monitoring Mattie during his blood transfusion. Mattie then had a lunch of pancakes but after lunch Mattie shut down and slept for several more hours with me right next to him. I was practically wedged between the wall and the bed. Linda came to visit Mattie and helped me get out of this crack, and gave me a break for a while, while she stayed with Mattie. Mattie slept through a visit with Jessie and most of Linda's visit. Linda brought Mattie a wonderful pretend money set for his treasure chest that he designed, which is an excellent way for Mattie to learn about numbers and currency. Toward the end of Linda's visit, Mattie woke up, because Peter was able to wake him up. I had absolutely no luck in that department. I think between not sleeping well last night, and then being premedicated for blood products, the combination knocked him out.

Mattie was groggy for a while, and decided to camp out on Peter's tummy until he was able to wake up. It was very cute. Jessie and Linda also told me that while Mattie was sleeping today, and I was sitting in the parent lounge, Mattie called out for Peter in his sleep. He smiled and then went back to sleep. A priceless moment.

I want to thank Tamra for visiting today and for her kindness to bring me lunch. That was very thoughtful, and the cupcakes were a hit with both Mattie and I!

While I was in the hospital with Mattie, Peter did consult with Dr. Guzetta at Children's Hospital this morning. Though I wanted to meet this surgeon, I realized that Peter had to keep the appointment today because there would never be a good time to reschedule and time is of the essence here. Peter found this visit very helpful and insightful. I think Dr. Guzetta basically did confirm for us that the lesions in Mattie's lungs are Osteosarcoma. It wasn't easy to hear, but the truth never is. He also is preparing Peter and I for the fact that there will be other lesions that will be found during the lung surgery, lesions that are too small to be picked up on a scan. He said from his experience, once there are measurable lesions on a scan, then most likely there are others not yet detectable. Dr. Guzetta agreed with Dr. Chahine's surgical plan and Dr. Guzette understood our allegiance to Georgetown and is even willing to do a co-surgery with Dr. Chahine at Georgetown. That is certainly a wonderful offer to have two qualified surgeons in the operating room, but I am also sensitive to how Dr. Chahine will feel about this. So we have to pursue this further. Both Dr. Guzetta and Dr. Chahine are recommending a sternotomy for Mattie. However here lies the problem. In the scans, Mattie does not have any visible lesions in the hylem portion of the lung (this is the most posterior portion of the lung lobes). If he did have lesions in the hylem, then a sternotomy isn't recommended, because the surgeon wouldn't be able to physically access these lesions and remove them. Lesions in this region of the lung can only be accessed through thorocotomies (which enter the chest wall through the ribs instead of the sternum). So what is the problem? The problem is right now there are no visible hylem lesions, but what if when doing the sternotomy they find there are nodules in there? There will be no way to remove them in the sternotomy, which is risky because that would mean the lesions would remain in Mattie's body until it healed and a thorcotomy could be scheduled. I personally do not like this risk, but both surgeons are recommending this option as the easier of the two to heal from. I am left with a lot of uncertainty. We will be consulting with Dr. Moir at the Mayo clinic too, and we will be curious to hear if he too recommends the sternotomy approach.

As the evening approaches, Mattie is playing again with my parents, and I have removed myself from the room. Mattie has been very snappy and nasty at times to me today. Which is fine, he is entitled, but I am too tired to maturely handle it, so in those moments I must removed myself from the situation.

It is my hope that Mattie will be discharged from the hospital tomorrow. This will happen if he doesn't have a fever, his white counts remain steady, and his 24 hour blood cultures remains negative.

I would like to end this posting with a message from my friend Charlie. Charlie wrote, "You certainly have faced your share of brick walls and I have great admiration for your skills and Peter's in navigating your way around, through and over them. I was sorry to hear that once again Mattie had such a severe reaction to the medication; let's hope that this means his immune system is being stimulated in a significant way and will be on guard against any recurrence of the disease. I have to tell you I admire your ability to balance wanting to let go anything that isn't important with the need to keep Mattie responsible for his actions. I think you do a wonderful job with this; it clearly is difficult but I think it will pay great dividends when Mattie is able to rejoin his friends at school and other activities. Fortunately Super Mattie has some great tools in his friendship arsenal including his endearing nature and his willingness to share kisses with those he cares about. I hope he is well enough to come to the march on Saturday; I know how disappointed you (and all of us) will all be if he cannot attend."

May 4, 2009

Monday, May 4, 2009

Monday, May 4, 2009

Quote of the day: "If we could all hear one another's prayers, God might be relieved of some of his burden." ~ Ashleigh Brilliant

I would like to begin tonight's blog with a countdown...... it is 5 days until the March for a Mattie Miracle! We are humbled and grateful to all of the volunteers who are working so hard to make this happen. To them, I am forever grateful, and to all of you donating and registering for the walk, we sincerely appreciate your generosity and support!

Peter stayed with Mattie last night so I could get an additional night of sleep. It is amazing how fast the morning time comes around and how long the actual day seems. Peter helped me get Mattie ready to head to clinic, which made the transition much smoother.

When my parents and I arrived at the clinic, Mattie met up with Jenny and immediately started a project. Soon there after he had his vitals and blood drawn. There is a new nurse in the clinic, because one of the full time nurses there is going on maternity leave. The new nurse's name is Roxanne. Mattie instantly liked Roxanne, because her name reminds him of his adopted sea turtle, Roxana. Mattie cooperated, and then was very happy to join Jenny and paint another ceiling tile for the clinic. This will be Mattie's fifth ceiling tile. As of now Mattie has painted a Scooby Doo tile, a huge cockroach tile, a Train tile, and a Rainbow tile. So what is featured on the fifth tile? A haunted house. Mattie requested that Jenny trace a house on the tile for him to paint. Mattie spent a good part of the day painting, he even recruited myself and Jessie to help him. The tile is almost completed, and we hope to finish it on Wednesday.

Mattie did several races around the clinic today with Jessie and myself, and each time of course Mattie won! I had the opportunity to chat with a couple of other families today which was nice. I also met another patient with osteosarcoma, and this patient completed his limb salvaging surgery about a month ago. Mattie came over to say hello to this teenage patient. Mattie had his blood drawn twice today, because his hemoglobin level was low and was in need of a transfusion. However, every five days Georgetown requires a type and cross (which determines compatibility between a patient's serum and donor red blood cells) blood test before Mattie can receive blood products. When Roxanne brought us back to a room to draw blood, Mattie started commenting about the painted patient tiles on the ceiling. I couldn't help but notice a tile that was painted by Cody in the room. Many of you remember that Cody was the six year old boy who recently died from Neuroblastoma. Seeing Cody's tile brought me great sadness. However, I am so happy it is there, because it serves as a reminder to all of us how fragile life is and more importantly that his presence will always be felt within the clinic.

Mattie then had to take oral premedications before he could receive MTP-PE. I tried convincing him to take this medication, but I wasn't being very successful. So Jenny came up with the plan of a prize. If Mattie took the oral medications, he could get a prize. He liked that idea, and complied with taking the medicine. However, when Jenny gave him a prize, it wasn't the prize he had in mind. Mattie became very ungrateful and difficult. He did not want to play with it, but continued to whine about the fact that it wasn't a Lego. I let this go on for a while, but then I felt the need to step in because he was being down right rude. He then began to cry, and eventually we talked this through. My mom redirected Mattie with something she brought for him, but before moving on, I had Mattie apologize to Jenny. Jenny handled it very well. Here is another example of the issues and difficulties of parenting a child with a life threatening illness. I could have caved in, because in the grand scheme of things, does it matter whether he pitches a fit about the prize he received? I certainly give him a lot of leeway on things, but being rude and ungrateful to others when they are trying to help and reward him is where I draw my limit.

Mattie played with a scientific illusions set my mom gave him. He played with it and had a good time, and then used some of the top like spinners in the set to create spin art with paint. It was very creative and I think his spinning results were beautiful. I took a picture of all these wonderfully colorful creations!

This afternoon, I had a conversation with Dr. Synder, Mattie's doctor. We discussed some questions I should ask the pediatric surgeon who we are meeting with at Children's Hospital tomorrow. In addition, I discussed with her Mattie's chemotherapy protocol. I have compared his current protocol to the clinical trial protocol he was on prior to surgery. You may recall Peter and I removed Mattie from this trial because we couldn't be assured that Mattie would be randomized to the appropriate arm of the study -- the one which would entail adding more powerful chemotherapy drugs. We felt since Mattie was a poor responder to the initial chemotherapy he was on prior to surgery, that we couldn't take any chances post surgery. We needed an aggressive treatment plan. So Mattie was removed from the clinical trial and placed on a standard protocol for metastatic cancer. Needless to say, I had some questions about the standard protocol, and I wanted to know why the clinical trial (which we removed Mattie from), had an additional three rounds of chemo associated with it. Yes I realize that is part of the hypothesis of the study to determine if this additional exposure of chemo will help with life expectancy, but if there were some strong indications that this would help Mattie, then I wanted to consider adding more chemo to his plan. Dr. Synder understood my question, but like I suspected, there is really no data out there to show that adding more chemotherapy on top of what he is already receiving will be beneficial. In fact, she couldn't even find substantial research out there to explain why the additional drugs and concentrations were added to the clinical trial. Basically after my conversation with Dr. Synder, I felt very frustrated. Not at her! But at the LACK of research for childhood cancers, but particularly for Osteosarcoma. Basically from my perspective, treatment for osteosarcoma is like a shot in the dark. There are some standard protocols, and that is fabulous if you are a good responder, but if you aren't a good responder, it almost seems like you proceed with caution and are on uncharted ground. Certainly you can sign up for a trial and other avant garde treatments, but MY GOD, we are living in the 21st century. We know how to deal with contagious diseases, we have wrapped our hands around the treatment of AIDS, and yet, we are in the pioneer days with Osteosarcoma. Not a good feeling if you should have a child with this horrendous disease.

I had my parents leave the hospital today, because it was going to be a marathon clinic day. Mattie was going to get MTP-PE and then head up to the PICU to receive a four hour blood transfusion (because by 5pm the clinic would be closing). Mattie received MTP-PE around 3pm (keep in mind we were at the clinic at 11:30am, it takes the pharmacy this long to get it together), and being true to form Mattie developed a reaction to MTP-PE almost an hour after the infusion. Meanwhile while he was developing a reaction, he also started his blood transfusion. Dr. Synder had the transfusion stopped, and got demerol for Mattie. Within minutes of receiving demerol, Mattie's rigors (intense chills and teeth chattering) stopped. He was crying and very upset. But I wasn't alone through all of this. Dr. Synder and Jenny stayed with me the whole time. Dr. Synder was in the room, remained calm and observed the whole reaction. When Mattie started to calm down, since the demerol was taking effect, he picked his head up from under the ton of blankets he was under, and asked me who was in the room. As he picked his head up, he said, "Dr. Synder is that you?" Then very seriously he said to her that he wanted her to sign his cast. You have to understand that Mattie refuses to let DOCTORS sign his cast. He told her that she took good care of him and really helped him today, which earned her the "treat" to sign his cast. By the time Mattie finished with her, Dr. Synder had tears in her eyes. Mattie has a way of getting to you! As she was signing his cast, he asked her if she was going to give him a kiss. Even in his stupor, the "kissing bandit" was at it again today! Take a look at the picture that was taken of us today.

Mattie, Vicki, and Dr. Synder! You can see Mattie can bearly keep his head up, but somehow Dr. Synder motivated him.

In addition to rigors, Mattie also developed a fever. Dr. Synder and I were chatting today because it was suspected that Mattie only would get a MTP reaction when his white blood cell count was low. But Mattie's absolute neutrophil count was 4500 today, which is high! So there is no rhythm or reason to when he receives a negative reaction. Which is why waiting two hours after an infusion is a safe thing to do. I asked Dr. Synder why Mattie sometimes has different negative MTP reactions. MTP is an experimental drug that is supposed to enhance the immune system. When the immune system is fighting pathogens, cytokines (Cytokines are proteins that are produced by cells. Cytokines interact with cells of the immune system in order to regulate the body's response to disease and infection.) signal immune cells such as T-cells and macrophages to travel to the site of infection. In addition, cytokines activate those cells, stimulating them to produce more cytokines. Dr. Synder feels that MTP activates different cytokines in Mattie, and some cytokines when released in the body produce fever, and others produce chills and rigors. Which would explain why sometimes he develops a fever, and other times rigors. Today Mattie had both! Needless to say, after this negative reaction, Mattie did not receive a blood transfusion today. Mattie will return to clinic on Wednesday for a blood draw and potential transfusion.

Peter picked Mattie and I up at clinic around 6pm. We got home at around 6:30pm, and tried to get Mattie to eat something, but his stomach just isn't interested in it. We want to thank Beth E. for another wonderful meal! Thank you Beth for the homemade meal and baked bread! I am dreading my dialogue with Mattie tonight for why he is seeing a surgeon at Children's hospital tomorrow. I am debating about how much to tell Mattie, but hopefully Peter and I will figure this out. We have a bright and early appointment with the surgeon at 9:30am, and then we head over to see Dr. Bob to get the cast REMOVED!

I would like to share a message I received today from my friend Charlie. Charlie wrote, "It is always nice to read about Mattie having the opportunity to spend time with his friends; like all of us, we gain so much from the company of our peers. How wonderful that he and Charlotte can pick up where they left off without worrying about what has occurred in the interim. How much healthier our adult relationships would be if we could do that. I have to say I love the "kissing bandit;" what a great alter ego for "super Mattie" to have. Once again I am struck by how little is actually in the control of parents who are naturally responsible for their child. The when and how of admissions, medications, daily routines in the hospital all are set up for the convenience or documentation of the medical staff or the insurance company regardless of the impact on the patient or their family. Now due to the billing process, a parent cannot even decide how and when to share medical information with their child because the child has to be dragged along on an appointment so that the insurance company will pay the doctor what he or she wants to bill. This is ethically irresponsible in my opinion. I know that you and Pete will find the right time and words to explain this to Mattie, like you, I wish you had more time to prepare him. I hope it goes well."

I would like to end tonight's posting with a commentary I copied off of Kristi's blog. Kristi is a fellow osteosarcoma parent and her posting today caught my attention. It is in NO way to downplay the Swine Flu and those affected by it, but it is to point to a critical problem in our country. The lack of focus, attention, and funding to childhood cancer research and treatment.

The Swine Flu: A Crisis by Kyle Alfriend, a member of PAC2 (People Against Childhood Cancer)
It's all over the news. The Swine Flu has entered the U.S., and everyone is responding quickly.

Here is what has happened already:

*Over 100 schools have closed.

*President Obama called on all schools with possible swine flu cases to "strongly consider temporarily closing."

*Congress approved $1.5 billion in emergency funds.

*Education Secretary Arne Duncan said that everyone involved in schools needs to "pitch in and do our part to prevent the spread of this flu virus."

*The Department of Education and the CDC have held conferences to give updates and advice for handling the crisis.

*WHO Director-General Margaret Chan has raised the alert level to phase 4.

*Shipments of the drug Tamiflu from the federal stockpile, enough to treat 11 million patients, have been distributed to several states.

*Dr. Jesse Goodman, of the Food and Drug Administration's swine flu work said,"We're working together at 100 miles an hour."

*Congress has asked Homeland Security to consider closing the Mexican border.

Here are the numbers: There have been 84 documented cases in the U.S. There has been one death, a two year old boy with underlying health issues. Updates on the Swine Flu epidemic are all over the papers, T.V., Internet, and radio. You can't avoid it.

This is a crisis and deserves a fast response. Sick children, and the death of even one child, is a great loss. So please understand what I am about to say. I in no way wish to belittle those who have suffered from the swine flu. I would just like to point out some comparisons.

1) Since the outbreak in the U.S., there have been 84 cases of swine flu, and one death. Compare that to the fact that 12,600 families are told their child has cancer each year. That is 35 families every single day of the year.

2) The media tells us that the 84 cases and one death from the swine flu is a "crisis" and "epidemic". But do a google search on childhood cancer, and you will find the media consistently refers to the 40,000 children currently with cancer, and the 2,500 annual deaths, as "very rare."

3) To protect yourself against the swine flu, you should wash hands, not touch your nose, and cover your mouth. You can even wear gloves and a mask. But there is no protection against childhood cancers. In fact, the cause of most childhood cancers is still unknown.

4) The swine flu produces severe flu symptoms. The effects of cancer are beyond description. So just consider this: Cancer is part of the body, so the treatment is a process of poisoning the child to the brink of death, then pulling back hoping they stabilize, then hitting them again. And again and again and again. Maybe a year, maybe 7 years. The resulting organ failures often cause more complications and deaths than the cancer itself. And then you wait and pray that it all worked. "Remission" only means they think they got. "Relapse" means they were wrong.

5) The government has opened up it's stockpile of flu drugs to fight the crisis. But there is no stockpile of cancer drugs. In fact, it has been 30 years since a new pediatric cancer drug has been developed. A 5 year study by the National Institute of Health concluded that new drugs for pediatric and adolescent cancers are not being developed because the profit margins are too slim. Therefore mega-doses of adult chemotherapy are administered to children, using a medical assembly line system called protocols. The great need for individualized care is ignored because it is not economically sustainable.

6) Congress has approved $1.5 billion in ADDITIONAL funding to fight the swine flu. With 84 infected people, that is $18 million per person. Childhood cancer receives a TOTAL of $30 million. That works out to $750 for each child currently fighting cancer.

So does any of this scare you more than the swine flu? It should. The emergency response to the swine flu had be great. But where is the emergency plan for childhood cancer? And where is the media attention? There is none.

Some might say these are not a fair comparisons. Well, in one way they would be correct. The $1.5 billion for the flu has been paid. The $30 million for childhood cancer was approved, but has never funded. Other issues of greater importance keep taking priority, such as $120 million to distribute free condoms in 3rd world countries (Yes, really. It's in the stimulus package).
I am not criticizing the response to the Swine Flu. It fact, I believe it is an appropriate response. I just do not understand why our children with cancer deserve less.

Please remember:

1 in 300 children will be diagnosed with cancer before the age of 20.12,600 children are diagnosed each year. 3,000 will die of cancer each year.

Cancer is the #1 disease killer of children ages 1-19.

The cause of most childhood cancers is still unknown.

Only 3% of cancer research money goes toward childhood cancers.

There are currently 30,000-40,000 children fighting cancer in the U.S. The number of children diagnosed with cancer has increased every year for the past 25 years.

Teenagers and young adults (ages 15-22) are the only age group that have flat or declining survival rates from cancer.

In the past 35 years ONLY ONE new cancer drug has been approved for pediatric use.

Since children can handle much more chemo than adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments. The result of these high doses of chemo on children is a higher rate of secondary cancers. For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments.

Teenagers have the highest cancer fatality rate of any age group under 80. Their cancers tend to be much more rare, therefore lacking established treatments. Their cancers also tend to be far more advanced when diagnosed.

A 5-year study at Children's Hospital Pittsburgh of UPMC recently concluded that teenage cancer survivorship is lower due in part to a lack of access to clinical trials. They concluded: "Patients who are enrolled in clinical trials offering the most advanced cancer treatments do better than patients who receive conventional treatment. Adolescents and young adults with cancer are less likely than younger children to be enrolled in clinical trials."

May 3, 2009

Sunday, May 3, 2009

Sunday, May 3, 2009 - Mattie's Fight Against Osteosarcoma

Quote of the day: "Whatever you do, you need courage. Whatever course you decide upon, there is always someone to tell you that you are wrong. There are always difficulties arising that tempt you to believe your critics are right. To map out a course of action and follow it to an end requires some of the same courage that a soldier needs. Peace has its victories, but it takes brave men and women to win them." ~ Ralph Waldo Emerson

Peter tells me that Mattie had a restless night of sleep on Saturday. Mattie was up every 90 minutes to use the bathroom and then awoke at 8am, which is unusually early for Mattie. Peter and Mattie played for several hours this morning with legos and puzzles. They also did a lot of pretend play together. Mattie was energized but moody for most of the morning, and had a visit from JJ (our resident Jack Russell Terrier) and also had the opportunity to watch a Tom and Jerry video with my parents. Later in the afternoon we packed up and drove to Charlotte's house. Charlotte is a very close friend of Mattie's. Ellen (Charlotte's mom) invited all of us to her home for dinner and a chance for Mattie and Charlotte to play together. As soon as Mattie and Charlotte saw each other, they just seemed to pick up from where they left off. They laughed together, played with Charlotte's dog, Nelson, and even played hide and seek. They then watched a Scooby Doo movie that Charlotte had wanted to see the last time she visited Mattie in the hospital.
While the kids were playing, we all had a lovely time talking and catching up with each other. My parents were invited as well, and they thoroughly enjoyed being included and getting to know Charlotte's family better. Charlotte's sister was home from college as well, so there was definitely a wonderful feeling of connectiveness and family in the air. Ellen prepared a beautiful and tasty dinner for us and after dinner we all played a game called Apples to Apples together. Naturally, Charlotte and Mattie teamed up together and beat all of us!
After the game, we had dessert and the chatting continued. Mattie then started to get tired, and before we left I decided to snap some pictures of this twosome. You can see the silliness that unfolded for the camera.

Once I put my camera away, the kissing bandit came out. This is what I called Mattie tonight, because to my surprise, Mattie and Charlotte kissed each other. It was very sweet and innocent. It is too bad my camera wasn't out for this, but it happened too fast for me to even process. Then after I commented on this kiss, the both of them started kissing the air and trying to kiss each other. I can assure you the kissing bandit was an excellent name for Mattie this evening! Just as a reminder, Charlotte was the friend throughout kindergarten who Mattie told me he was going to marry. I do not think Mattie had the foggiest clue of what this really meant, but now Mattie's newest kick is if you kiss a girl that means you are going to marry her. This whole dialogue is truly fascinating to listen to! Needless to say, we appreciated being a part of Charlotte's family tonight, and to sit around a dinner table as a family and have a conversation.
As we head into Monday, Mattie heads to the clinic for his administration of MTP-PE. On Tuesday, Peter and I have an appointment at Children's Hospital. We are meeting with a pediatric surgeon there who Dr. Bob recommended. The only catch is the doctor wants to see Mattie as well. The appointment is at 9:30am. It will be like mission impossible to get Mattie there on time. The timing is bad enough, but Mattie at the moment does not know he needs lung surgery in June. I wasn't prepared to tell him yet. But he will be suspicious when we meet with another surgeon on Tuesday, especially since he thinks his treatment is almost over. I resent having to bring Mattie to this appointment. Sure every doctor we have ever consulted with, except for Dr. Seibel, has said they needed to see Mattie. But do they really examine Mattie, NO! But I believe the main reason to see him is for billing and insurance purposes. I am disgusted with the whole situation. I will begin to talk with Mattie about the June surgery, but I wish the medical field would allow parents to make some decisions, and that insurance did not dictate when I have to deliver news. I am sure the doctors would give me a rational explanation for why Mattie must be present for this visit, but frankly I wasn't born yesterday. I have survived 10 months of this process, and there is NO way a surgeon who is doing lung surgery needs to physically see Mattie, when he has access to scans and other diagnostic reports. Okay I said my two cents, but naturally my hands are tied.
I would like to share a message from my friend Charlie. Charlie wrote, "I was glad to hear that Mattie had a good day on Saturday and that Vicki got some much needed downtime. I can tell that you had your hands full; no parent has enough of an energy store to be a full time playmate to an active seven year old but your pre-planning certainly made the situation much better. As for seeing this last chemo session as the end of a painful road, even the most positive transitions take courage and how much more is required when the threat of a return to illness lingers over your lives. Anxiety levels are high and will be up every time Mattie faces another scan to make sure he remains well. Truthfully, there is nothing anyone can say that will relieve that fear; all you can do is face it with courage and try (as you are) to change the outcome of this disease long term."
As we approach Mother's day, I would like to share a poem Charlie shared with me today! This is for all the awesome moms out there and who read this blog!
Awesome Moms

Before I was a Mom,
I never tripped over toys
or forgot words to a lullaby.
I didn't worry whether or not
my plants were poisonous.
I never thought about immunizations.
Before I was a Mom,
I had never been puked on.
Pooped on.
Chewed on.
Peed on.
I had complete control of my mind and my thoughts.
I slept all night.
Before I was a Mom,
I never held down a screaming child so doctors could do tests.
Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night watching a baby sleep.
Before I was a Mom,
I never held a sleeping baby just because I didn't want to put her down.
I never felt my heart break into a million pieces when I couldn't stop the hurt.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.
Before I was a Mom,
I didn't know the feeling of having my heart outside my body.
I didn't know how special it could feel to feed a hungry baby.
I didn't know that bond between a mother and her child.
I didn't know that something so small could make me feel so important and happy.
Before I was a Mom, I
had never gotten up in the middle of the night every 10 minutes to make sure all was okay.
I had never known the warmth,
the joy,
the love,
the heartache,
the wonderment or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much, before I was a Mom.