We had a peaceful night of sleep on friday night. Though Mattie's sleep-wake cycle is very off. By 1am, Peter and I were thoroughly wiped out and literally told Mattie enough was enough and it was time to go to sleep. We all slept in late this morning and had a slow start to the day. Then we got ready and walked to Washington Harbor to meet Peter's family to go on a Potomac River boat ride. Originally the plan for today was to go canoeing, but Mattie told me he did not want to do that today because this frightened him. The irony is Mattie has gone canoeing many times prior to being sick, but I think he is very careful with his body these days, and in his assessment canoeing wasn't safe. So we changed plans and went on a different type of boat ride. Below you will see some pictures from our Potomac River adventure, which took us from Washington, DC to Old Town, Alexandria. We ate in Old Town and walked through a lovely park by the water.
The Mattie Miracle Cancer Foundation celebrates its second anniversary!
We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Childhood Cancers. We help build the awareness of osteosarcoma and childhood cancers, and educate the public and medical professionals about the realities of childhood cancers. We advocate for the psychosocial needs of the children and their families who are fighting this terrible disease. Please visit the website at: http://www.mattiemiracle.com/ 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!
October 11, 2008
October 10, 2008
Thank you Grace for tonight's wonderful quote:
There's an old Winston Churchill saying, "kites fly highest against the wind, not with it." Grace says, "And you epitomize that in spades." Thanks Grace!
October 9, 2008
Mattie had a late rising this morning. Which was just as well since he was not allowed to eat or drink ANYTHING after 9am in order to prepare for his two hour long MRI. Ann came in this morning to sit with Mattie for a while. This was a much needed break, since I was dragging and feeling ill. I have developed a cold, sore throat, and am just feeling tired. Ann came in this morning filled with all sorts of goodies. Ranging from vanilla frosted donuts, munchins, to bags of toys and cards. When Mattie woke up, Ann took Mattie for a walk around the floor and they landed up together in the childlife playroom. They were sitting with Lesley and Whitney and were making friends with some other kids in the room. I have had the wonderful opportunity to meet some lovely families while in the childlife room. But frankly to me, today was a big old blur. Maybe it is because my head is full of fluid, or because it was a day where we had to work hard to entertain Mattie so he wouldn't focus upon the fact that he was hungry. Thank you Ann for the hot tea!
On a funny note, Jenny and I have a running joke. There is NO amount of signage I can put on Mattie's door to prevent people from entering when we are resting. While Ann was with Mattie today in the childlife room, I attempted (emphasis on ATTEMPTED) to lie down and rest my head. I had Jenny's 'do not disturb' sign on our door. Do you want to take a guess as to how many people entered the room even though the sign was very visible? If you guessed four, give yourself a gold star. The first person to enter was the cleaning person, who decided to empty all my trash and bang around cans, while she could see I was trying to sleep under the covers. Now I could have started yelling, but then I wouldn't get my trashed picked up for the rest of the day. So I let it go. But after the fourth interruption, I gave up! I headed back to the childlife playroom, and Lesley literally decided to create an octagon shaped stop sign in red that she attached to Jenny's sign and put it on Mattie's door. When Jenny and I were headed back to the room and we were in the hallway, we could observe someone at Mattie's door. This fellow proceeded to knock on the door and walk in. With that Jenny surveyed him and asked him if he saw the STOP sign, and whether he thought the sign did not apply to him. You had to be there to truly get the humor to this whole scene. To me it is a study in human behavior. No one reads signs, we sometimes work on instinct.
This brings me to the next point. Scheduling a six year old for scans in the afternoon is like sheer punishment, especially when we have finally turned a corner and Mattie is willing to eat. Holding Mattie back from eating food until his MRI at 1:45pm was hard. Thankfully though Mattie had great distractions such as Ann, Jenny, Linda, Whitney and Lesley. In addition, Susan, the story lady, came in today and acted out a story she wrote herself. Mattie played the prince. My mom played the queen, and I was the Witch in the story. Very fitting based on my mood! Mattie then headed back to his room, and got ready for his MRI. Linda came down with us to the MRI procedure, since Mattie needs as much distractions as possible, since he gets scared when he sees the intimidating MRI machine. Linda was great, and her whole childlife team tried super hard today to make sure they knew how Mattie was doing throughout the two hour long procedure. Lesley (one of Linda's interns) met Mattie after the MRI was over and was with him as he was wheeled back to the PICU. However, some of you may recall my harrowing three hour nightmare on tuesday when Mattie was recovering from being sedated from a PET scan. Well today went much smoother, because he was given Versed to help him transition out of his propofol sedation. It was a night and day difference. He still was crying and groggy for about 90 minutes, but he wasn't agitated and hysterical.
When Mattie finally recovered from sedation he was ready to eat. However, there was no food for Mattie. I am not sure what is going on with the hospital kitchen, but Mattie received NO food yesterday and then did not get a dinner tonight. Rest assured that won't be happening again, since I raised such an issue over this, I had the head of the kitchen come and visit and apologize to me tonight and he brought Mattie a beautiful dinner. I think it is unfortunate that it has to come down to this, that you really need to constantly advocate and speak up on behalf of the patient. Lord knows what happens to those not being represented. Mattie had his heart set on spaghetti with tomato sauce for dinner. He wished for this the whole day. So I called Peter and I told him he couldn't come to the hospital tonight without the pasta. Peter was a major hero this evening! Mattie ate like a champ, and at 10:30pm, he is still eating.
So as we head into friday, we are awaiting Mattie's methotrexate level to continue to fall. It is .27 now, and it has to be .1 or lower to leave the hospital. Friday holds another two hour MRI at 1pm. So it will be a long day for Mattie and part of me has been so wrapped up at getting Mattie through the scans, that I haven't prepared for what the scans are actually going to be showing. I suppose we will deal with that on friday or monday as it comes.
Ann collected several gifts from other families today and brought them to the hospital. I want to thank the Doane family for their lovely Scooby Doo video collection. This is a big hit tonight. Mattie loves his cute pumpkin (things are looking like Halloween in Mattie's room!) and car stickers as well. We want to thank Susan Cooper for her amazingly generous check to the Mattie fund and for her sending along two books she authored and signed for Mattie. We would also like to thank the Singh Family at RCC for their contribution to the Mattie fund. It is amazing how we are all connected through RCC, even if we do not directly know each other. Ann also told me that Siobhan Starrs hosted another successful bake sale at last weekend's soccer game. Thank you Siobhan for helping and supporting Mattie.
On the electronic front, we would like to thank Coach Dave and Carey C. (she lives in PA, and her daughter has osteosarcoma too, and has located us through the blog) for your wonderful e-mails and Kim and Karen for your e-cards. We thank the Brandt family for a delicious dinner and for thinking of us. Mattie really appreciated the shake. He has asked for one all day. I guess we are back into drinking shakes.
I end tonight on a musical note. Each week, the hospital has two volunteers (Jerry and Nancy) who go room to room with a keyboard and entertain those in their rooms. The hospital has many volunteers who come by during the week, but our favorite volunteers are by far Jerry and Nancy. The last time they came we played name that tune with old movies and musicals (this occurred during our first week of chemo, and just when I thought our world was ending at that point, they lightened our spirits and restored our hope). Tonight we played name that tune to TV show theme songs. Peter and I held our own, even with shows back in the 40s and 50s. Toward the end, Mattie also played name that tune, and got all 5 songs correct! Jerry and Nancy lightened up our night, and somehow when they play music we all forget our problems. What therapy, and we don't even have to pay for it. They are just delightful and generous spirits. They stayed with us for about 90 minutes. Thanks for the fun, it is a nice way to end our day!
October 8, 2008
Today's quote speaks to Mattie's strength and courage. Because despite his terrible day on tuesday, Mattie was able to "blossom" and have a wonderful day today. Mattie woke up early and was motivated to get his bathrobe and shoes on, because guess who he wanted to see? You probably guessed, his pals Linda, Whitney, and Lesley. Mattie and I walked passed the playroom and childlife office but the ladies were not in yet (since it was EARLY in the morning). Mattie and I then walked to the family room where we were productive and did laundry together. At the laundry machine we met up with Brandon's (a teen with cancer) mom. We chatted for a bit and then continued our walk. Not long after, Whitney and Lesley came to find Mattie. They grabbed a hold of his IV pole, and walked him to the playroom. I stayed behind in Mattie's room but joined them about 45 minutes later. When I got to the playroom, I found Mattie playing with Lesley and Brandon. They were working very well together creating a wonderful sealife scene. Mattie molded sea creatures out of foam and model magic (literally Mattie molded a whale, sting ray, and fish). To me the playroom is a blessing and a much needed addition to the floor. As the morning unfolded, Mattie built upon his creation and created an island, bridge, and an ocean. Below you will see him hard at work.
Back in the playroom this afternoon, Mattie and I played a rousing game of 3-D Scooby Doo, a board game given to us by Mattie's music teacher, Mr. G. Everyone in the playroom is intrigued by this game, because of the characters and 3-D nature. Denise, our social worker, met us in the playroom and she continues to be amazed by Mattie's creativity. Seems to me that Denise and others feel that Mattie is unique in many ways because he can entertain himself with these craft and creative projects. So we were enjoying watching the artist at work this afternoon.
Two e-mails I would like to share with you tonight. One comes from my friend Christine. Christine invited us over to her house last weekend for a BBQ. Today she wrote to me, "During your visit I was struck by the your calm demeanor with Mattie. What I mean is that you never hovered over Mattie or stopped him from running or crawling around while the kids were playing. I imagine that this hands-off approach must have been tough given Sparky and other concerns over active physical play. Whether this was your intent or not, you have great instincts because it looked to me like Mattie was very relaxed and could just be a kid, getting lost in imagination with no other worries." What a wonderful message to receive. Because in all reality it would be very easy to want to hover over Mattie, but a part of me knows that on some level he is VERY responsible. He takes care of his body and protects Sparky. I have confidence in him to do the right thing, and he has doctors and nurses poking and proding him all the time in the hospital, so during his free time, I want him to feel free and in control. However, I did not realize I was consciously doing this until Christine sent me such a nice e-mail.
One night a man had a dream.
He dreamed he was walking along the beach with the Lord.
Scenes from his life flashed across the sky
and he noticed two sets of footprints in the sand,
one belonging to him and the other to the Lord
When the last scene had flashed before him,
he recalled that at the lowest and saddest times of his life
there was only one set of footprints.
Dismayed, he asked, "Lord, you said that once I decided to follow you,
you'd walk with me all the way.
I don't understand why, when I needed you most,
you would leave me."
The Lord replied, "My precious child.
I love you and I would never leave you.
During your times of trial and suffering
when you saw only one set of footprints...
That was when I carried you."
"Again, I'm not sure why this spoke to me so loudly today, but I thought that by sharing with you, you may get some comfort in being reminded that you are not alone. It is through GOD that you were directed to RCC and to SSSAS and through that path that Team Mattie was formed, so for all that we do there is a reason. Today, I just wish you peace and comfort in one another and knowing that you can find strength from one another and from reaching out to others when needed."
October 7, 2008
In the midst of the kind of day we had today, I want to thank Susan S. for this wonderful quote she sent me. I am beginning tonight with it, because it is my hope that out of this nightmare will eventually come a rainbow!
Sometimes It takes a lot of rain before you get your rainbow. Don’t give up, yours is coming. Keep believing!
Last night and today are the kind of days which you don't want to repeat, much less remember. They say things happen in threes, well for us they come in fives, sixes, or sevens. Let me recall for you our monday night. Mattie's urine met its required PH by 8pm, a PH above 7.5 is necessary to start the methotrexate infusion. He was scheduled to start chemo at 9pm. At 9pm, Anita comes into Mattie's room. Anita was Mattie's nurse and she explained that she caught a pharmaceutical error in the chemo product that was prepared for Mattie. The pharmacy sent up the incorrect dosage of chemo for Mattie. Instead of chemo for a six year old child, a chemo dosage for a baby arrived. Fortunately Anita caught it. But it gets better. The hospital doesn't have a pediatric oncology pharmacist on staff during the evenings, so they had to call in the on call pharmacist, who lived an hour away. This woman had to jump into her car and head back to the city. After all of this, Mattie's chemo was finally put together by midnight, and the infusion then began. Meanwhile we debated back and forth about his anti-emetics, because they were administered to Mattie at 9pm, when we thought he was going to get chemo. These medications were in his system for 3 hours, and we were wondering whether they would be just as effective if the chemo was started at midnight. The ironic part about all of this is what we feared would happen with this chemo (vomiting) wasn't the actual problem that arose. We are learning never to expect the expected!
Mattie received methotrexate last night. Some of you will recall my previous description of this medication. It is the color of highlighter yellow. It screams toxicity, just looking at it. Any case, at some point through the night, Mattie's vitals revealed that his pulse rate was low and his blood pressure was high. It was a consistent pattern last night. By 4am, the resident wasn't happy with what she was seeing and she reported it to the attending. The attending physician ordered an EKG for Mattie to rule out heart murmurs or arrhythmia, which could cause Mattie's high blood pressure (and would be a significant issue to address). We agreed to the EKG, but didn't realize what was coming our way. At 4:30am, in walks two techs with an EKG machine. The lights all went on and they started talking to each other loudly. The whole experience frightened Mattie. They treated him like an object rather than a frightened child. Mattie landed up crying hysterically and it took a while to calm him down. If these two things weren't bad enough (the mix up with the chemo and the EKG), we were hit with a third issue. We told the staff that Mattie had a scheduled PET scan for today at 2pm (which would mean he couldn't eat or drink for 8 hours before the scan). We debated back and forth with the staff about this. There appeared to be no record of a PET scan for Mattie and at 3am, Peter and I were rummaging through our e-mail accounts looking for the written confirmation we received. Fortunately Peter found it. Each of these incidents alone could be enough for a person to tolerate, but factor in all three issues on top of our already stressed state and it does not make for a happy mix. Peter went out to the nurses desk and complained and then called up our patient advocate. We understand things go wrong, and that things happen, but the way treatments are delivered and the insensitivity to Mattie and his needs won't be tolerated. I find myself continually trying to explain my feelings to doctors, which further frustrates me. If you can't honesty get how we are feeling, and this is your profession, is it my job to educate you? Well perhaps the answer should be no, but maybe it is the educator in me. I feel like I am on a quest to help people understand the stresses Mattie and his family are under. On a side note, Mattie's EKG was normal.
Mattie woke up in a mood. He was wiped out because he was up on the hour last night. Mattie couldn't eat or drink this morning because he had to wait for his PET scan at 2pm. Because Mattie is scared of these scans, he needs to be sedated for them. Before we headed to the scans, I had a visit from Ellen (many of you know Charlotte, Ellen is Charlotte's mom). Ellen e-mailed me and could tell I was having a hard day and also could tell I wasn't planning on having lunch. So she kept me company and also brought me lunch. What a good friend! Thank you Linda for watching Mattie so I could eat and chat with Ellen! After lunch, I went down with Mattie and Linda to the PET scan. Mattie got sedated, and literally collapsed in my arms. I then waited upstairs in Mattie's room for him to come up post-PET scan. During that time, I was visited by Jenny and Elizabeth (an art therapist intern from GW!). We had a lovely conversation and I replayed last night's experience with them. They are amazingly empathetic and have a demeanor that makes you feel unjudged and appreciated. While we were talking, we could hear Mattie being wheeled down the hallway screaming. I spent the next three hours helping Mattie come out of his sedation. It was my understanding that Mattie would get versed (a type of sedation) to help him transition smoothly to being awake, but he did not get it today. Which is what accounted for the next three hours of torture. Mattie was upset, agitated, and at times inconsolable. It is a feeling of helplessness like no other as a parent. Fortunately I had experienced this before, but basically in the end, it is me who lives through these days. Doctors and nurses bounce in and out, but I am the one getting hit, being talked down to, and so forth.
I want to introduce you all to Linda's interns, Whitney and Lesley. These are two very special ladies. Whitney has been observing Mattie's interests and she brought to the hospital today 13 wonderfully shaped sharks' teeth. She hid them cleverly in a tub of sand, so that Mattie had to dig through the sand to unearth the teeth. This activity brought a smile to his face, and I felt the need to recognize this tonight in the blog, because there wasn't much that made Mattie smile today. Thank you Whitney for sharing your sharks' teeth with us and for the wonderful book about sharks.In the midst of Mattie transitioning out of sedation, we had two visitors. It was wonderful to see Mattie's school counselor, Ms. Susan D. Poor Susan saw and experienced Mattie at his worst, but she did not skip a beat. Thank you for delivering the wonderful "scary" cards from Ms. Houghton's class. In addition thank you for the wonderful chopsticks you brought back for Mattie from your trip to San Fran. That was very special. Also we look forward to looking at Mr. Weiman's book, Flotsam! Our second visitor was our friend Joy I. Joy arrived with dinner and a gift for Mattie. Thank you for the wonderful spaghetti. This is the food of choice this week! Mattie devoured three bowls of pasta in between crying. Thank you also for the wonderful craft kit you gave us. I look forward to making paper chains with Mattie. Thank you for sitting with us through this and for watching Mattie while I spoke to his doctor for a few minutes!
We received a special phone call from Joan Holden today. Joan is the head of SSSAS. Joan is celebrating her 25th anniversary this year, as head of a well known private jk-12 independent school. It is very evident why she is so successful. She is commited to her students. Joan doesn't know our family that well, but she has made it her business to get to know us, has extended her help, and whatever SSSAS resources she can offer to assist Mattie. Thank you Joan for your call and for continuing to check in.
Mattie received two very special gifts today. An enormous halloween basket was sent to Mattie by my students in the Human Services program at GW. Thank you Honey (the program's director), Tess and Talia (two very special students) for spearheading this amazing gift. Below you will see this basket. It was stuffed with balloons, candy, and all sorts of fun trick or treating gifts. It is my hope that Mattie will share them with Linda and some of the other kids on the floor. Check it out below! I am blessed with very special students.
The other special gift came from Srinivas and Artie. Mattie loved the fishy theme. We can't wait to play goldfish and Mattie is already playing with his fishy finger puppets. They are great. Below you will see Mattie playing with his puppets.
As I try to continually do, I would like to share two e-mails with you that I received today. It sounds silly, but sometimes these e-mails really help me pull out of the funk I can get into. One came from my friend, Charlie. Charlie said, "We continue to pray for Mattie, you, and Pete. We will have Mattie's name read as part of the service requesting healing/physical and spiritual. On Rosh Hashana we ask for names to be inscribed in the book of life for a good and healthy year and on Yom Kippur that the inscription be sealed. I pray every night that this may happen for Mattie. This definitely describes the Brown family!"Love generously, care deeply, speak kindly. Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
The second e-mail comes from a SSSAS mom who I have recently had the opportunity to meet at Mattie's carwash fundraiser. Liza follows Mattie's story daily and her daughter who is a senior at SSSAS amazes me with her determination to inspire others to host a fundraiser for Mattie. Liza wrote, "I'm sure that I'm like others who wait each night to read your entry. It is just something that I feel that I must do every night before I go to bed. Although so many of us do not really know you, Peter, or Mattie well because our kids are older or younger or we haven't really crossed paths, we are all so totally connected to you and your family. You have created the most amazing web that connects all of us to you, to your family, especially to Mattie and to each other. I'm sure that I can speak for others when I say that I'm grateful for your candidness, your heartfelt thoughts and your gift for describing your journey with Mattie. Because of you, I have made new friends and am grateful."
On the electronic front, thank you Karen, Mr. Weiman (for the Jib Jab card of JJ dancing in High School Musical 3!), Charlotte, Kim (The Resurrection Sun will always shine down on you is a beautiful sentiment), and Susan for your wonderful e-cards. Thank you Ms. Pollak and Emily W for your e-mails. I want to thank you all for your electronic contributions as well. In these difficult times, I must say we are deeply fortunate to have such an incredible support network and I don't want you to think for one moment we take this for granted. We are very appreciative.