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!
April 4, 2009
Quote of the day (Thanks Charlie!): "Life is a roller coaster ride, Time Turns the Wheel and Love Collides, Faith is believing you can close your eyes and touch the sky, So Shine while you have the chance to shine, Laugh even when you want to cry, Hold on tight to what you feel inside and ride..." ~ from the song "Ride" by Martina McBride
I included the link to the "Ride" video. I love the story going on in the background of this music video. Everyone can relate to being in a traffic jam, which is why this video caught my attention. Life has many roller coaster rides, or unexpected turns. These events may not be what we wished for or hoped to happen, however we don't want these to be missed opportunities to learn from, to grow, and to open our hearts to those around us.
Peter told me that Mattie fell asleep at around 10:30pm on Friday. That is no surprise, since he had an extremely exciting and active day! Peter was up every two hours helping Mattie to the bathroom, and capturing urine for analysis. I on the other hand had the luxury of another night at home, while Peter stayed with Mattie. When I got back to the hospital today, I couldn't get over Mattie's room. It was packed with birthday gifts and a ton of balloons. The nurses couldn't get over it! It made for a very interesting moving out day!
Mattie had several visitors today. Thank you Tamra and Louise for stopping by and dropping off a gift from Coach Holm (the head football coach at SSSAS, and a major Mattie supporter) and his family. The gifts and cards were so meaningful. We want to thank Tamra for the special cupcakes too! They helped to really celebrate Mattie's birthday today! Mattie loved them. Mattie's second visitor was Erin. Erin is one of our fabulous HEM/ONC nurses. You may recall that Erin has a deal going with Mattie, Mattie gives her hugs, and she gives Mattie empty syringes to spray water at people. Erin came in to see Mattie, mind you today was her day OFF! Can you imagine someone coming to her workplace on her day off?! It speaks to the caliber of the HEM/ONC nurses at Georgetown, and their commitment to their patients. We want to thank Erin for the Cars puzzle and the "Incredibles" movie (which Peter and Mattie are watching as I type this blog!).
Mattie's third visitor was his technology teacher at SSSAS, Mary D. Mary came to the hospital today to spend time with Mattie. It was very funny. At first Mattie did not recognize Mary. Why? Because Mattie is used to seeing Mary dressed in her professional clothes. Today she was dressed more casually, and it was hysterical to watch Mattie studying her face. He finally put it together, and was thoroughly animated. He couldn't wait to show Mary his T-Rex model (which is literally almost 4 feet long) and some of the lego sets he put together from his birthday party! One of his favorite sets was given to him by Miki (another outstanding HEM/ONC nurse of Mattie's). Mary and Mattie had a great time together, and also watched the movie, "The Land Before Time." This seemed like a fitting to watch, especially when you have a four foot long dinosaur model in your room!
While Mary was with Mattie, Peter and I started taking things down to the car. After our initial load, we had lunch on campus and sat outside in the hospital rose garden. It was another windy day here in DC, but it was a warm wind, that made being outside lovely. While eating we sat under a glorious cherry tree. The blossoms are in full bloom in DC. I feel the cherry blossoms are one of the many perks about living in Washington, DC. I can't think of a more glorious way to welcome spring into our world. Peter took some beautiful pictures of these blossoms.
When Peter and I got back to Mattie's room, he was having a good time with Mary. I so appreciate Mary's generosity of time and spirit. She is a special lady, who understands the impact Mattie's illness is having on Peter and I and she wanted to give us some time with each other. Very thoughtful! Mary has a long work week, was recently married, and yet always finds time for Mattie. The world would be better if it had more Mary's in it!
At around 3pm, we started the discharging process. Mattie's nurse, Nguyet (another fabulous HEM/ONC nurse, who we only see on weekends) assisted us. It is funny, we only see Nguyet on occasion, since we are not always in the hospital over the weekends. Yet one of the last weekends we were at the hospital, Nguyet and I had a chance to chat. She told me how impressed she was with us, what a dedicated family we are, and how lucky Mattie is to have us as parents. She told me this, because she thinks that Mattie's recovery is in part linked to our steadfastness. Nguyet's comments meant a great deal to me, and I haven't forgotten them! Once Nguyet discharged us, we then had the fun of packing up the cars. The discharging process is always a battle. Mattie wants to help us bring things down to the car, and it becomes a royal balancing act trying to push a wheelchair and cart things out to the parking garage. Normally we talk him out of helping. However, today Mattie was insistent, and against my better judgment, I took him down, he was holding his large balloons, and I was trying to push him and a piece of luggage. That did not work out too well, and with the wind, Mattie lost one of his favorite LARGE balloons. I suppose this was a lesson to Mattie, that perhaps he needs to listen to us in the future when we tell him he needs to be patient and wait until the packing process is done. But I do feel for him. He wants to help, participate, and do things that he used to be able to do. I don't want to squelch that! My intentions were there, but the execution wasn't, and it only led to everyone getting frustrated!
When we got home, I had a TON to unpack. Bags and bags of presents, with literally NO room at home to put them. The lack of organization and things piling up seems to go hand in hand for osteosarcoma families. We are rarely home, or have the time to care for what is going on at home. I am the kind of person who needs organization in one's life, so I can assure you this lack of structure and organization can become overwhelming to me at times. But at this point this is low on my energy and priority list. Mattie was excited to be home, because there were more presents that came in the mail for him to open. He is slowly opening them up, he hasn't finished yet! I would like to note that Mattie's head of school, Joan Holden sent Mattie several wonderful "bug" presents. Right up his alley! We also want our readers to know that we congratulate Joan for being this year's Washington Post recipient of the Outstanding Educational Leadership award. Joan has been the head of St. Stephen's/St. Agnes school for 25 years, and we can't thank her enough for her support of Mattie this year. We have experienced how her leadership of the school community has and continues to assist a student under the most challenging of circumstances.
This evening I also did laundry and then packed up our hospital bag. You just never know when we will be headed back there, and if Mattie should get sick, things need to be in order. It is definitely an interesting way to live one's life.... out of a suitcase, packing and unpacking constantly. While I was doing the laundry and packing up, Peter had a FULL afternoon of playing with Mattie. If Mattie's cancer does not suck the life out of Peter and I, then we know that Mattie's constant need to play will.
Mattie received MANY electronic birthday cards today. Mattie sat on my lap and saw each card and loved all the sentiments. I can't thank all of you for remembering Mattie's birthday through e-mails, e-cards, phone calls, and gifts! This helped to make his day very special!
I want to end tonight's blog with three messages. The first message if from my friend Charlie. Charlie wrote, "Wow, Friday certainly was the proverbial roller coaster ride as compared to the day before. What a great day for Mattie and how wonderful to see the smiles and joy of Mattie and all his friends and supporters! And speaking of supporters, what an amazing outpouring of help, support, thoughtfulness and caring from all those people, the nurses, therapists, friends, RCC and SSSAS parents, the list goes on. I am not sure that I have ever seen so many people dedicated to helping one child make the most of every moment possible. Mattie and you have the ability to bring out some of the most caring and loving responses in people- a great gift on your side. I hope the rest of the ride brings you much more sunshine than rain and that the rain showers end with rainbows."
The second message is from my cousin and Godmother, Rosalinda. Rosalinda wrote, "I pray for all of you daily. Vicki, Mattie is extremely fortunate to have parents like you and Peter in his life. I have read all of the caring professionals who touch Mattie’s life on a daily basis and I pray for them, too.
I came across the following prayers and these are my prayers to them:
Dear Lord we thank you for doctors and nurses and all who work in hospitals. May they continue to use their knowledge and skills to bring comfort and ease to all those who suffer from cancer. Lord, be with all carers who spend days and years working to bring relief to those with cancer. At times they see recovery which is wonderful but there are times when the results of treatment are disappointing – please give them strength and hope and the love to carry on Lord, in your mercy (Hear our prayer)
Dear Lord we bring before you today those who devote their lives to research into the causes of cancer trying to find a cure. Help them to do their work successfully and to share their knowledge to the benefit of all who wish to see the ravages of this terrible disease ended. Be with them at all times to guide and strengthen them in their constant search for the knowledge that will finally see an end to the suffering and heartache caused by cancer. Lord, in your mercy (Hear our prayer)"
The final message is a quote I received today from my dad. I have definitely seen the power of laughter on Friday! Against the assault of Laughter nothing can stand. ~ Mark Twain
April 3, 2009
Left: Some of Mattie's fabulous HEM/ONC nurses. From left to right: Kathleen (who wasn't working today, but came into the hospital especially to see Mattie and celebrate his birthday and give him a gift), Sarah Marshall, Vicki, Laura, and Miki!
Left: Mattie surrounded by friends and presents. He was thrilled!
Left: Charlotte, Abigail, Mattie, Robbie (a volunteer), Brandon, and Colin (a volunteer), and of course T. Rex!
April 2, 2009
Left: Mattie performed a tough ring trick on his own. I can't believe he took this trick on, since it has to be set up just right, otherwise it doesn't work!
Left: Bob and Mattie performing a new trick that Mattie just learned about a week ago!
While Mattie was performing with Bob, I had a discussion with Dr. Toretsky about Mattie's treatment. We discussed some of my recent frustrations and disappointments with Mattie's care, which I have expressed on this blog already. In addition, Dr. Toretsky and I discussed Mattie's upcoming lung surgery. Dr. Toretsky feels Mattie should have a thorocotomy, particularly the surgery that cuts through the sternum in the chest. He cautioned me about thoroscopic procedures like VATS, because he feels that the tumors aren't always fully identified and removed. So he gave me a lot to think about. Dr. Toretsky also told me, that if we did not remove Mattie's tumors in the Fall, that Mattie would not have seen his seventh birthday! That spoke volumes to me, in terms of how aggressive Mattie's disease is. However, it is times like today where I wish I couldn't read between the lines and understand people as well as I do. Dr. Toretsky did not exactly say this, but in essence the message that I sensed was that patients with lung metastasis do not have a long life expectancy, and after treatment is over in May, we will be playing the waiting game until the next tumors appear. Well that sent me right over the edge today, and believe me I did not need much to send me there. I landed up crying, and basically couldn't stop.
When I came back into the playroom the magic show was over. I tried to compose myself to say good-bye to Bob, but that did not land up going very well. Fortunately Bob was courageous enough to handle my outburst. Thank you Bob for coming today, giving Mattie the confidence to perform, and to make him feel good about himself!
After the show, Meg and I took Mattie downstairs to the physical therapy gym. Mattie had another wonderful and active session with Anna. Again, I was in tears, and I removed myself from the room, because I did not want Mattie to get a hold of what was going on with me. I took a walk outside and got some fresh air. When I came back in, I felt a little better. But shortly there after, Linda joined us as did Peter. Peter brought Kathy Brown with him. Kathy is a RCC mom, and made us dinner tonight. Peter ran into Kathy in the hospital hallway, and Kathy got to observe part of Mattie's PT session. Mattie did a tremendous amount of walking and movement all day, and during his session. In fact, Linda got Mattie to walk to the playroom from his room today, and Meg got him to walk back! Mattie loves to do PT with Meg and Linda present, and frankly when we are balancing an IV pole, the more hands present the better. I am so happy that Mattie has connected with these fine ladies, and today, I can attest to the fact that they really stepped in when I emotionally couldn't be there.
Mattie will receive his fourth infusion for the week of chemo tonight. He handled last night's chemo beautifully. I will head back to the hospital tomorrow morning, and I am so happy Mattie is excited about his party. I have had more hospital personnel tell me they are coming to his party than I can remember. In fact, I have nurses telling me they are coming in especially for Mattie's birthday, even on their day off. What can you say about these women?
I would like to share a message I received from my friend Charlie. Charlie wrote, "What a roller coaster Wednesday's blog was. The definite high of Mattie doing well in therapy, interacting with friends, having a good time and taking in nourishment. All wonderful things to read about. However, on the other side, the size and complexity of the looming surgery-this is a big shock to all of us reading the blog too. I am sure Mattie will come through the surgery well but it seems so much to ask of one little boy. I am so sorry that you are facing this when we had all hoped that by this summer Mattie would be spending his time with friends and improving his walking skills through physical therapy. This must feel like quite an emotional blow-much like a punch in the stomach takes your breath. Just know that we are all here, supporting, praying, hoping for the best outcome possible for Mattie."
April 1, 2009
Right: The group paintings that were created in the childlife playroom. I love Mattie's hand print on the bottom picture.
Left: Mattie built such a high wall to knock over, that we could hardly see him from behind the cones. But it was wonderful to see Mattie using his arms, standing, and balancing!
While Mattie was with Susan and Linda in the PT gym, I called Dr. Bob. Bob and Anna spoke about casting options for Mattie. Bob is recommending that Mattie have a cast placed on his right leg next week. The cast will immobilize Mattie's right leg, with the goal to straighten his leg at the knee. Until Mattie's knee can straighten out, Mattie will be unable to walk normally. Right now Mattie's leg is frozen in a bent position. Bob has requested to do the casting himself. I am very grateful that Bob is willing to do this personally and to oversee the casting process. It is true that Bob is our friend, but I have a feeling even if he weren't his attention to detail, follow through, helping patients and their families throughout the entire process (from surgery through recovery) make him an excellent match for my personality.
March 31, 2009
March 30, 2009
Quote of the day: "May God give you...For every storm a rainbow, for every tear a smile, for every care a promise and a blessing in each trial. For every problem life sends, a faithful friend to share, for every sigh a sweet song and an answer for each prayer." ~ Irish Blessing
Peter helped me get Mattie ready this morning to check into the hospital. His presence really helped make the process go a bit smoother. When Mattie and I arrived at the hospital, we had a very hard time parking. We landed up getting the last parking spot, and of course all the elevators from the parking lot to the hospital were broken. So I had to wheel Mattie through the garage, up many ramps to get into the hospital. This alone is taking your life in your hands, since on some ramps it is challenging for cars to see pedestrians.
We arrived in the clinic and Mattie was happy to see Jessie. Mattie began by constructing a wooden model kit of a plane. Shortly there after, Junko (a SSSAS mom and friend) arrived and she brought Mattie several wonderful gifts. She brought him a bag of plastic flies and spiders. Mattie decided to build a house for these insects out of a cardboard box, and to add insult to injury, he had Jessie gift wrap the box, so that he could pretend to give one of his nurses a gift. Some gift! He tried this gift out on Dr. Synder and Sharon (our Georgetown Chaplain). They know Mattie, so they knew the box could potentially have a creepy crawler in it. They were right! Junko also brought us a lovely lunch! However, Mattie was on the moody side today, but by the time he got up the PICU and played with Linda and Laura (one of Linda's interns) his attitude started to improve.
Two things greatly bothered me about today. The first issue, was the admissions process. This is our 52nd admission to the hospital. In fact we were in the hospital all last week. However, despite the fact that we are a known entity, with no insurance or address changes, we must go through the same bureaucratic registration process with each admission. To my regular readers this doesn't come to you as a shock. You have heard me complain about this, but I guess what incenses me is that despite complaining verbally and in writing, nothing gets done about the process. I can assure you moving in and out of the hospital weekly is stressful. Why complicate the process further by having patients jump threw one more hurdle? I get very frustrated when I feel like I am communicating clearly, and think I have made headway in a system, just to find that I am back at square one. This issue is bad enough, but the second issue had me pacing around today.
The second issue, which again, my regular readers are well aware of, is that there is a Vistaril shortage at Georgetown. Vistaril is a type of antihistamine, but it is very effective as an anti-emetic for Mattie. For weeks, I have told Mattie's doctors about my concerns about the dwindling Vistaril supply at the Hospital. They assured me they would look into it and if they couldn't find more they would come up with an alternative. I want our readers to understand, as the nurses have educated me, that you want to prevent Mattie from experiencing nausea. Because once nausea starts, it is hard to hold it back and possibly prevent vomiting. So to me, Vistaril is vital to ensure a certain level of comfort for Mattie through chemo. Thanks to Mattie's blog, I have had the opportunity to meet a lovely family from Pennsylvania. This family's daughter uses Vistaril and they let me know their hospital has an adequate supply. I even alerted our doctors to this information. So why Georgetown feels there is a national shortage is beyond me. We have even found a supply at Duke. But again, even today, Georgetown's pharmacy claims there is a national shortage. I have been addressing this issue for weeks with Mattie's doctors, because I wanted to prevent exactly what we are dealing with NOW. As of today, there was NO vistaril available for Mattie. I blew the roof. After which, they did locate the last vial in the hospital, but it isn't enough IV vistaril to carry Mattie threw the week. Because we have to conserve this last vial, the doctors expect me to wake Mattie up periodically through the night to give him oral vistaril. I am not sure why they don't see the problem with this? I am sure any parent reading this blog gets it immediately! Mattie needs rest. But no, instead I have to disturb his sleep to wake him up to take oral medication. Mattie is not very complaint with oral medication, and I can assure you I dread his 2am dosage! Mind you all of this could have been avoided if the doctors and pharmacy were proactive and obtained the IV vistaril weeks ago, when we brought this to their attention. I also want to mention that I did not only mention this issue once to the doctors, I addressed it numerous times. So often, that all the nurses on the floor knew about our issue. So tonight, I feel this is just another example in a sea of examples, that illustrates my disillusion with the medical community. Their decisions have real world consequences on their patients and families. I personally would love to get Mattie's doctors in our room at 2am to administer this oral medication. I would bet if they had a couple of sobering reality checks, it may make them think twice about placating parents and assuring us they are on top of our requests, when it clearly is not a priority for them. My favorite line of reasoning today is that Mattie is getting a lower dosage of Ifosfamide this week, so he most likely won't get nauseous. This line of reasoning is based on what? We do not know how Mattie will react, and I rather be prepared with the medication than not have it at all.
Mattie had a wonderful time playing with Laura today and two wonderful male volunteers! While Mattie was occupied, I had a lovely time chatting with Junko. In addition, Junko gave me one of her signature massages. I think she found more knots in my back and shoulders than she knew what to do with. I always appreciate her visit, her generosity of time and spirit, and her support. Junko took the day off of work to help me out, and I will never forget such acts of kindness.
Peter arrived from work this evening and found Mattie's room brimming with people. We had volunteers and nurses visiting! Mattie is a popular fellow. Peter literally had to hand me our things through the doorway, because he couldn't get in himself. I was able to unpack our room, while Mattie was being entertained on the floor. In addition, Jerry and Nancy (our favorite musical volunteers) came tonight. They were prepared to do a Name that Tune game with Mattie, but by the time they arrived, Mattie's energy level was decreasing and he wanted to watch a movie instead with one of the male volunteers. So Jerry and Nancy will save the game for another week, but Jerry brought a prize for Mattie for when he wins the game. Mattie perked up with that notion. The silver lining to my day was Jerry took myself and Nancy out to dinner tonight. I have gotten to know these two lovely individuals well, and Jerry has wanted to introduce Nancy and myself to the "Mighty Moe." The Mighty Moe is a hamburger like no other, and apparently it is a Washington, DC tradition, that you could have found at the once existent Hot Shoppes restaurants. Now the only place you can experience a Mighty Moe is at the Key Bridge Marriott. It was a lovely dinner and conversation, and I really needed the opportunity to step away from the hospital tonight. I can't thank Jerry enough for his generosity. Jerry is also the person who donated a keyboard to Mattie. Just to put his level of support of my family in perspective!
Mattie did receive MTP-PE today and did just fine with that infusion. Despite getting to the hospital today at 11:30am, Mattie began his 30 minute doxorubicin infusion at 9pm. While I write this, Mattie is receiving his four hour infusion of Ifosfamide, and the infusion will be complete around 1:30 or 2am. Just in time to take the oral medication! Clearly the fun never ends in our room!!!
We want to thank Erica Jones for a lovely and generous dinner tonight. Mattie literally ate ALL the bread and butter, and he loved the lasagna! Thank you for supporting us on our first night back at the hospital this week.
I would like to share a message I received from my friend Charlie. Charlie wrote, "Rainbows are special. They take both rain (tears) and sunshine (smiles) to make them appear. They are fragile and vanish quickly so if we are to appreciate them and share them with others, we have to stop what we are doing and pay attention to them. They are a symbol not just for hope and promise but for all things precious and fleeting like childhood. We have to stop and enjoy our children while they are small as they will not be that way very long. Next week is Mattie's birthday and I am sure there were a number of medical personnel who were convinced he would not be here to celebrate it. Thanks to your dedication and determination and Mattie's spirit, he will be here to celebrate and may he have many more to enjoy after this one!"
I end tonight's posting with a quote I received from my mom!
How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in life you will have been all of these. ~ George Washington Carver
March 29, 2009
Quote of the day: "We don't accomplish anything in this world alone ... and whatever happens is the result of the whole tapestry of one's life and all the weavings of individual threads from one to another that creates something." ~ Sandra Day O'Connor
I would like to share two pictures we took today that symbolically represent to me a new start hopefully for Mattie and for us. Mattie loves the rainbow balloon he received yesterday at the Georgetown Children's Gallery opening. This morning he was playing with the balloon and it was hovering over his head. From a Christian perspective, rainbows have vast significance. In particular, the rainbow was a sign of God's greatest promise to us: that of forgiveness and love. His promise to never smite humanity which grants us all numerous "second chances," and the gift of Salvation. I couldn't help but wonder what message was being communicated to us today through this balloon. It is my utmost prayer that God gives Mattie a second chance and protects him now and into the future.
The second picture, Peter captured. Right outside our front door, we have a mother dove roosting and sitting on two eggs. We noticed this gift of nature yesterday morning. At first mother dove was very suspect of us, but now we are all getting used to one other, and she no longer flinches or flies away when we open the door. Peter showed Mattie the dove this morning, and Mattie is now acting like a mother hen to the dove. He is very concerned about her, and his concerns are indeed genuine. The pending hatching of two eggs seems to mark the beginning of life, an aura that I hope surrounds our household. I find it ironic, out of all the places this dove could have selected to have her eggs, she chose our flower basket. I may be grasping at straws or considered a real optimist, but in times of great difficulty, I feel the need to look to my outside world for important signs of better things to come.
Mattie was excited because Liza (one of our favorite volunteers at the hospital) was coming over today to play with him. Peter and I have asked Liza to spend four hours each weekend with Mattie in hopes that we can use this time to catch up with each other, and remove ourselves for a few hours from our intense caregiving duties. Liza and Mattie had a wonderful time together, and I take great comfort in seeing Mattie's personality blossom and of course I am equally comforted by the fact that he embraces interactions with others in his life again. Trust and security are back for him, but I will never forget how these vital components of living were threatened and violated for Mattie. It speaks to the resilency of the human spirit! But seeing my real Mattie come back only provides further evidence that Peter and I made the right decision. The decision not to leave his side, and to be there for him every step of the way through the many months we spent in the PICU. We followed our hearts and the psychological literature, which many times countered the medical advice we received. Certainly it was a large sacrifice we made but one I personally believe was necessary in order to achieve mental wellness.
While Mattie was with Liza, Peter and I went for a walk together on Roosevelt Island. It was a beautiful day in Washington, DC. At one point during our walk, we sat on a bench together and I closed my eyes and put my head on Peter's shoulder. For that one moment in time, I felt like I was by the ocean. The traffic sounded like waves to me, and the wind reminded me of an off shore breeze. The birds were singing in the background as well. While sitting and away from Mattie, I also spent time in silence crying. So in essence, I went to the island with a terrible migraine (despite being on medication), but by the time we completed our walk, I felt better. It was a needed escape for fresh air, time together, and to regroup. Caring for a sick child is all consuming, in the process it is easy to forget about yourself and your marriage. Fortunately Peter and I have known each other a long time and were good friends first, but I can see how cancer could destroy relationships easily.
After our walk, we went out to lunch together and continued talking and sharing stories with each other. It was a lovely afternoon, and we are grateful that Liza can give us this time! When we got back home, Mattie did not want Liza to leave. Which is always a great way to gauge how Mattie feels about someone! Mattie played with his hotwheel cars later this afternoon and even had a visit from JP (our neighbor) and JJ (our resident Jack Russell Terrier). JJ celebrated his first birthday yesterday. I can't believe how he has grown, it seems like he was a puppy only yesterday. JP brought Mattie a wonderful pizza and JJ enjoyed some of the crusts with Mattie.
We want to thank the Peterson family for a lovely dinner. Thank you Karen for the homemade lasagna, bread, and goodies! We so appreciate your support and kindness.
Peter and I still have to pack for the hospital. In addition, we have a central line dressing change ahead of us. One of our least favorite Sunday night tasks. Mattie will head back into Georgetown Monday morning. He will be there a week, receiving Doxorubicin and Ifosfamide. But Mattie knows next week is his birthday, and despite going back to the hospital he is very excited. In all these months of treatments, Mattie has never fought me when I told him he had to go back to the hospital. There are probably a lot of reasons for this, such as my honesty with him, the fact that I haven't left his side, and he trusts us. But the other vital factor is Linda. Linda has normalized the PICU experience for Mattie. Linda has become a trusted friend of Mattie's, and never underestimate the power of friendship. The community of HEM/ONC nurses, Jenny, Jessie, Linda's interns, and several other Mattie supporters make this harrowing pace more tolerable.
I would like to share a message I received from my friend Charlie. Charlie wrote, "Saturday's blog was all about community and connections and what can be accomplished when a dedicated group of people put their minds and talents to working together on a project. The lovely part was the inclusion of the children's thoughts and ideas as well as the parents. How often do we plan things without asking the recipients what they need or want. Then we are disappointed that what we have so carefully crafted or planned does not work out. I was impressed to see that this was not the case. I thought the art was lovely and the poetry wonderfully expressive. I am sorry it was not covered by the local newspaper as it would certainly be more uplifting and meaningful news than much of what we are reading now! It was great to hear that Mattie is beginning to find his way back into the web of family connections, to eat with you and to say grace. These rituals are so important but we tend to overlook them until they are not there. May his willingness (as well as the ability) to do so, continue to increase as you approach the end of the treatment."
I end today's posting with a story Charlie shared with me. It is entitled, The Kindness of Strangers. I have never heard of Cameron Stewart, but his mission is an interesting one. I am not sure you can self impose kindness on others, but I certainly admire the spirit behind it.
THE KINDNESS OF STRANGERS - by Michael Freeman
GOOD DEEDS: Teenager Cameron Stewart is on a mission to make a million – and give it away – before his 20th birthday
‘I WAS IN this café the other week,” says Cameron Stewart, “and I was buying an ice-cream. So I gave the guy at the desk a fiver and said, the next person who orders an ice cream, tell them it’s on the house. Tell them it’s free, and this will pay for it.”
Cameron Stewart is an 18-year-old from Holywood, near Belfast, and this sort of thing is exactly his forte. He is the proprietor of Ark clothing. The acronym stands for Acts of Random Kindness, and the idea is to encourage wearers to perform, as his website suggests, “One Ark every time the clothing is worn.” It’s sort of like putting on a superhero costume, except your superpower might be the willingness to give up your seat on the bus.
The point, says Stewart, is to change the way people behave. “In the world, everyone is just out for themselves,” he says. “And to an extent that works.
But I think when you start to put yourself last, you realise that it is the best way to live.” So the clothes are really just a prod in the right direction. “I want the logo and symbol to inspire people. Hopefully people will see it and recognise it, and think ‘Oh yeah – I should really do something for someone’. That’s the idea.”
He shows me one of the Ark tops. Each one sold has a cardboard tag, personally attached by Stewart, with one suggested act of random kindness. They read a little like the cards in a Monopoly game. This one says: “Pay for a random pump at the petrol station. This could be a costly one – but imagine if someone did it for you.” As he shows it to me, he can’t resist a little salesman’s pitch. “You can see, can’t you,” he says, “they’re class quality.” It does look like a nice shirt.
So did the clothes come first, or the concept? Was the idea always to change the world? “No,” he says. “No, no, no. It was originally going to be just for Cameron’s profit. And for me to be a millionaire by the time I was 20.
But then I realised that it’s more fun to give money away than to store it all up. So it changed to being a millionaire by the time I was 20, and giving it all away.” All the profits from Ark clothes go to charitable works – basically, acts of kindness on a larger scale. “When the whole business was building up, I made a group on Facebook,” Stewart says. “There are about 500 or 600 members now. And just before Christmas I sent out a message saying, if you see a need anywhere, just e-mail me and we’ll pay for it.”
So what have they done so far? “One girl e-mailed and said: ‘There’s a woman I work with who’s recently had a child. And she was back to work within a week of having the baby, because she doesn’t have any money and she’s really, really struggling.’ So I gave her some money, and they made up a Christmas hamper and delivered it. We did a few hampers.” The group also delivered presents to a Belfast homeless shelter.
How did he get started in the clothes business so young? “Well, when I was in school, I was an entrepreneur at heart,0 he says. “I could sell anything, and I always tried to sell anything. Just for the fun of it, I guess. And I started buying designer clothing online, and selling it online. And then from doing that, all these Chinese suppliers e-mailed me, so I ended up getting this massive list of factories in China. All these contacts.”
When he came up with the idea for Ark – and after his exams were over — he went to China himself to check he wasn’t buying from a sweatshop. “Thankfully, the first guy I met was just fantastic, and the factory was great. We drew up a contract and got 600 shirts ordered. It took a week.”
This is all highly creditable. But, I ask, doesn’t he miss normal 18-year-old activities? “I do miss Xbox and all that kind of stuff,” he says. “I would love to sit and do that all day. But I think this’ll be far more rewarding, even though it means answering e-mails all day.”
Cameron is sceptical about the idea of going to college. “The businessmen I aspire to be like don’t have degrees. They just started off. A lot of my friends have gone, but most of them are still based in Belfast, so I’m still kind of living that life. Apart from business meetings, and bank manager stuff, and all that.” http://www.arkchangeyourworld.com/