Happy Birthday Mattie!!!

Saturday, April 4, 2009 --- MATTIE TURNED 7 TODAY! He was born on a Thursday. Thursday's child is a joy to know!

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.

http://www.youtube.com/watch?v=e3bKcuRw87E


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

Friday, April 3, 2009

Quote of the day: "There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love." ~ Washington Irving

I love Washington Irving's quote, because that is just what Peter and I have for Mattie, unspeakable love! Clearly Thursday was a horrible day, so being consistent with our emotional roller coaster ride, can you imagine how today was? If you guessed it was a great day, then you guessed correctly. It was the kind of day you want to try to capture all the sights, sounds, and feelings forever. Mattie had a fun filled day from the moment he woke up.

I arrived back at the hospital at 8:30am today, so Peter could go to work. One would have thought I wiped myself out crying yesterday, but oh no. The crying continued through the morning. It was at that point that Peter rationalized with me that he understood how I was feeling and had every right to be upset, but that somehow if Mattie saw me like this on his birthday, that this would spoil the day for Mattie. I let that sink in, and I pulled it together before Mattie woke up. However, since Mattie did not wake up until 11am, I too took a nap. That definitely helped my headache as well as my mood.

When Mattie woke up, he was greeted by Sarah Marshall. Sarah Marshall is a wonderful, empathetic, and competent HEM/ONC nurse and she was very excited for Mattie today. She even brought Mattie a special birthday gift, which Mattie loves! Mattie had to stay in his room for an hour or so when he woke up because he was getting IV antibiotics. These antibiotics are preventative for pneumonia. While in the room, Mattie had a visit from Meg (one of Linda's interns, or I should say Mattie's racing buddy). Meg gave Mattie a special gift, a musical magic wand. Meg's mom in Georgia helped Meg track down this wand. It is something every great magician needs. I snapped a picture of this dynamic duo today.

Anna, Mattie's physical therapist, also came up to visit Mattie and to get him to move his body. It was hard for Mattie to do PT today since he was hooked up to an IV pump delivering antibiotics, but he managed. While with Anna, Mattie developed a bad stomachache. He eventually decided he had to go to the bathroom. Normally he would be throwing everyone out of the room so he could have privacy to sit on the commode, but he did not ask Anna to leave. I think this is very indicative of Mattie's level of comfort with Anna. I want to remind our readers that this trust was earned. Anna worked very hard for months to build rapport and to get to know Mattie, but once you obtain Mattie's trust, he loves you.

This morning I tracked down Linda to find out if she could watch Mattie while I went on campus for lunch with Ann and Ellen. Ann text messaged me this morning and said that she and Ellen wanted to take me out, and remove me from the PICU. They understood how horrible Thursday was for me. I truly appreciate their level of care, concern, and friendship. This meant a lot to me and Linda enabled me to get out. Linda lined up back to back coverage for Mattie from noon until 3pm. I want to thank Jessie, Jenny, Meg, and Linda for coming through for me today, as they do each and every day I am at Georgetown.

I had a lovely lunch, got a chance to chat, and somehow doing this and getting out of my daily nightmare, is always very healing. I consider myself very lucky to have friends who care so deeply about Mattie's situation and its impact on myself and Peter. When lunch was over, I headed to clinic to meet with Mattie's doctors and Ann and Ellen went back to the PICU to help Mattie and Linda prepare for the party.

The party was so memorable and special today. The energy in the room was apparent as was the joy, happiness, and laughter. Mattie was all smiles and full of energy. In fact, if he did not have a bald head and was hopping around, it would be hard to tell he has cancer. He was the picture of life today! I captured a lot of incredible photos (over 100 to be exact) and I feel the pictures will help illustrate this amazing party. But suffice it to say, Mattie had a big turn out of guests!

Left: Brandon and Mattie! Brandon came back to the hospital today to celebrate Mattie's birthday. Brandon not only stayed the entire time, but played with the kids, and also did all the clean up with two volunteers after the party was over. What an incredible young man!

Right: Laura (one of our great HEM/ONC nurses) and Mattie!

Left: Mattie and Sarah Marshall. Sarah Marshall is an incredible person, nurse, and amazing role model for us. She is a cancer survivor!

Right: Linda ordered three dozen glorious cupcakes from Georgetown Cupcake.

Left: Mattie is showing off his cockroach card that Jenny and Jessie designed for the occasion! No bug party would be complete without a few roaches, right? The card was so clever and creative, it was a knock knock joke card. Mattie loved it and it was signed by everyone in the Lombardi Clinic!

Right: I LOVE this picture! Look at Mattie's face as he watches Abigail and Campbell blowing party favors!

Left: Ann brought an excavation project for the kids. The clay was surrounded by spider webbing, which they first had to unwrap, and then dig through to reveal two plastic spiders. I just love the kids with their goggles on!

Right: The digging continued with determination!

Left: Mattie and his birthday buddies! From left to right: Abigail, Livi, Charlotte, Mattie, Zachary, and Campbell.

Right: Mattie enjoyed the cupcake so much, he literally put his face into the frosting.

Left: Christine bought Mattie a can of silly string. After everyone sang the happy birthday song, Robbie, one of the volunteers, surprised the kids by spraying the silly string at them. They LOVED it! They were running around the room collecting all the pieces.

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!

Right: Meg (one of Linda's interns) and Linda (right near Mattie's IV pole) working hard to make sure the kids were having a good time.

Left: Mattie surrounded by friends and presents. He was thrilled!

Right: Once the present opening frenzy was done, the kids posed as a group with all of Mattie's gifts. In the very front is Livi, in the second row going from left to right is Campbell, Charlotte, Mattie, Zachary, Abigail, and in the back row is Brandon!

I was very happy to see Mattie sharing his gifts with others and not being possessive of all the wonderful things he received.

At around dinner time, Dawnee came to visit us. Dawnee is the former assistant director of the Resurrection Children's Center, Mattie's preschool. Dawnee brought us a wonderful dinner, amazing bread and butter for Mattie (the food of choice!), and beautiful cupcakes from Cake Love. Ann gave Peter and I the opportunity to eat together, while she watched the kids after the party. Peter and I went outside to eat dinner. Despite being windy, we enjoyed the fresh air and the time to reflect on the party. Meanwhile, back in the playroom, Ann was working with the kids on this HUGE t-rex model that the Lombardi clinic gave to Mattie. A gift right up his alley! Check out the finished product!

Left: Charlotte, Abigail, Mattie, Robbie (a volunteer), Brandon, and Colin (a volunteer), and of course T. Rex!

Right: Mattie with Charlotte and Abigail! They were surrounded by Mattie's balloons. All these balloons were floating over Mattie's head in his room. He was loving it!

I tried to include a lot of pictures so you could share in the excitement of Mattie's day. We purposefully tried to keep Mattie's party small today, and will officially celebrate his birthday in May when chemo is done. However, it was wonderful to see Mattie so happy and animated, and I am very grateful to everyone who attended to bring cheer to the occasion. I want to thank Linda for working so hard to make this day special (you succeeded!), for Meg and Laura (child life interns) for entertaining the kids, and I want to especially thank my friends who made today possible. Thank you Lorraine for attending today (you haven't missed a party yet, and it wouldn't have been the same without you), Ann (for everything you do and for being you, we LOVE you!), Ellen (for always being a great moral support and sharing Charlotte with us), and Christine (for your friendship, driving all the kids from school today to the hospital, and for the great balloons and silly string!). We were also thrilled that Zachary could be with Mattie today. Zachary is a loyal friend of Mattie's from preschool, and it is wonderful to see their friendship evolve even under these challenging circumstances. Mattie loved each and every one of his presents. This will be a seventh birthday we will always remember and cherish. I just wish we had more typical childhood days, and after experiencing a day like today, you long for how things used to be. To have a healthy child once again. Something we always took for granted.

Mattie is receiving his last dosage of Ifosfamide tonight, which will conclude the five day cycle for the week. Our plan is to return home on Saturday night, and then play the two week waiting game to see if Mattie develops a neutropenic fever.

I end tonight's blog with a message I received from my friend Charlie. Charlie wrote, "Thursday was clearly a study of contrasts. It was a good and productive day for Mattie, thank goodness and a very sad and difficult one for you and Pete. Such painful and horrible decisions to make; what a position for a mother to be in, that she has to decide how much pain her child will have to face. All I can say is that Mattie is clearly not ready to quit, he is dedicated to getting well and regaining lost skills and your feeling that you have to give him the opportunity to be cancer free is a good one. Try to keep an open mind, do as much research as you can and make the best decision you can knowing that none are perfect and that your love and support will help him through whatever is up ahead. Whatever scars Mattie has and will have from this are matched by the ones on your heart, and hopefully as his fade so will yours. My prayers, the prayers of the support team (they are awesome) of friends both known and unknown across the globe are with you--may the Lord hear them and turn them into the light to guide your family through this to a healthy life on the other side."

Thursday, April 2, 2009

Thursday, April 2, 2009

Quote of the day: "If I have been of service, if I have glimpsed more of the nature and essence of ultimate good, if I am inspired to reach wider horizons of thought and action, if I am at peace with myself, it has been a successful day." ~ Alex Noble

Today was the kind of day that was a blur to me. Why was it a blur? It was a blur because emotionally I had reached my limit. I was so overwrought with sadness, that I could see I was having a hard time holding it together. In fact, I did not hold it together at times, and spent a good part of the day crying. I called Peter several times today while he was at work, and at first he was alarmed that something was wrong with Mattie. As the phone calls kept coming his way, he realized Mattie was fine, but I was having a hard day.

Before Mattie woke up, Dr. Synder came to visit me. I sent Mattie's doctors several e-mails last night expressing my concerns about a couple of things. Dr. Synder wanted to visit me personally to let me know she heard me, wanted to help, and has also agreed to take on an active role to find the right surgeon for Mattie. She is sending out letters and copies of Mattie's scans to doctors up and down the East coast. I feel the need to hear how other professionals would handle Mattie's surgery. Though I do not want to leave Georgetown, and I think the environment and the people are a known and IMPORTANT quantity, I also learned from Mattie's first surgeries, that having the right surgeon can make it or break it for Mattie's recovery and chance of survival. If I could write a want ad at this point in time, I would be asking for the Dr. Bob equivalent in the world of pediatric lung surgery.

Mattie woke up at 11am, and he was in a good mood. While Mattie was having his breakfast, Dr. Yvonne Carter paid a visit to discuss options for Mattie's surgery. She spoke very candidly about surgery in front of Mattie. Mind you Mattie doesn't know anything about his lungs, so at first I was very uncomfortable with this dialogue. But I also had the TV on, and Mattie was very focused on his show, and truly was oblivious to the conversation. However, he was annoyed that a woman was in the room and taking my attention away from him. In any case, Dr. Carter discussed a procedure called VATS, which stands for video assisted thoracic surgery. Dr. Carter feels that two out of the four lesions can be done with this technique, and she would be willing to attempt this technique with the remaining two lesions, but would need the help of a radiologist at Georgetown who specializes in wire guided surgery. The radiologist would place a CT guided wire through Mattie's chest, which would pinpoint exactly where the lesions are, and then through the VATS process the surgeon would be able to "cherry pick" out the tumors. Of course, if she is unable to do this she would have to do a thorocotomy. It was an interesting visit, of which Peter and I will follow up with a more formal meeting. So that sounded positive, however, this is one school of thought. The other school of thought is that the only way we will truly know what Mattie has going on in his lungs is by doing a full blown thorocotomy. So at the moment, I am confused, overwhelmed, but as Peter says, we have to weigh our options and make the best possible decision.

Linda came down to see Mattie right after the surgeon left. Together they brainstormed birthday decorations and things for Mattie's party in the hospital on Friday. Mattie is very excited about his celebration (though his birthday is technically on Saturday!). Denise, our social worker, also came by to visit with Mattie, and she gave Mattie a wonderful Easter gift, that was dropped off for Mattie by the Easter Bunny. That bunny certainly knows his stuff. Mattie got a lovely basket, some candy, bubbles, hidden picture books, and a robot which Mattie can take a part and rebuild. Linda gave me some time today to leave the PICU. I indeed did that, and I actually left the floor. Mind you I left while Mattie was getting his MTP-PE infusion, which should tell you what kind of state I was in. Linda has witnessed Mattie during a negative MTP-PE reaction, so I was confident Mattie was in good hands.

Mattie also enjoyed his time in the playroom, and when I got back Mattie and Linda built a large runway for his planes. Mattie also designed a control tower, and the set up was quite impressive. While I was sitting with Mattie, we also went through party decorations and had fun chatting. While chatting Mattie even ate two slices of the bread Susan brought us yesterday. With plenty of butter of course. In fact, I think if I gave Mattie a spoon, he would eat butter right out of the container. Later in the afternoon, Bob Weiman (Mattie's head of the lower school) came to visit Mattie. Together they performed a magic show for several hospital friends. I unfortunately missed most of the show since Dr. Toretsky came up to talk with me during that time. But fortunately people took pictures for me.

Left: Bob and Mattie performing their American Flag trick.

Right: Mattie performing his scarf trick solo.

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!

Right: Linda, Jenny, and Sharon (our chaplain) enjoying the show!

Left: Bob and Mattie performing a new trick that Mattie just learned about a week ago!

Right: Bob surprised Mattie with a new trick. It involved flour, eggs, and so forth. Before Mattie knew it, a lovely vanilla frosted cupcake appeared before his eyes. I hear everyone sang happy birthday to Mattie, and then he devoured the cupcake.

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.

I want to thank Kathy Brown and her family for a tasty dinner, and the incredible desserts from the Dairy Godmother, an ice cream store in Alexandria, VA. Mattie loved the pumpkin frozen custard that was lumped between two ginger snaps. Delicious! We appreciate your support.

As I am writing this blog, I am home. Peter sent me home and it is my hope that I can regroup myself. However, I think my sheer exhaustion, fear, and concern for Mattie are not going to be cured with one night of sleep. I wish it were that easy. I certainly know that Peter doesn't think this is a quick fix, but I so appreciate his sensitivity to my needs. Especially when he is just as tired and worried.

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."

I end tonight's blog with a song from Cats the Musical, entitled, "Memory." It seems to capture my mood at the moment..... "Memory. All alone in the moonlight I can smile at the old days," life was beautiful then, "I remember the time I knew what happiness was, Let the memory live again."

http://www.youtube.com/watch?v=4-L6rEm0rnY

April Fool's Day

Wednesday, April 1, 2009

Quote of the day: "An acre of performance is worth a whole world of promise." ~William Dean Howells

Mattie had his second infusion of doxorubicin and ifosfamide last night. He handled that quite well, but at 1am he was still wide awake. This was shocking considering what an active day he had on Tuesday. When Mattie woke up this morning, he was in the mood to play an April's fool prank on his nurse. Erin was Mattie's nurse today. Erin was one of the first nurses we met back in August, and Erin taught me how to do a central line dressing. This was such a daunting technique back then, but Erin was very supportive and was a good teacher. Mattie handed Erin the gift he made in clinic on Monday. A cardboard box stuffed with plastic spiders and flies. When Erin opened the box she gave out a big yuck! She was a good sport, and Mattie enjoyed the whole process.

Mattie had a lot of visitors today. Whitney and Lesley (Linda's former interns) both came to spend the day with Mattie. In addition, Brandon came back to the hospital as well to spend the day with us. So it was like old home week in the PICU. Mattie had fun with them in the playroom. They watched the movie, "Hotel for Dogs" together, painted, and even had pizza. I snapped some pictures of this great foursome.

Left: going clockwise - Mattie, Brandon, Lesley and Whitney

Right: The group paintings that were created in the childlife playroom. I love Mattie's hand print on the bottom picture.

Left: Mattie played a game this afternoon, in which his bathroom was a jail. He threw each member of the group in jail at some point during the game, and the others had to help Mattie block the door so there wouldn't be an escape. Check out the picture, where Brandon is trying to escape from the "jail," and Mattie, Whitney, and Lesley were sitting on a chair in front of the door blocking the way. What you can't see in the picture is Mattie moved all the garbage cans, his wheelchair, and table in front of the bathroom door as a barricade. Mattie had a wonderful time playing this game over and over again, and Whitney, Lesley, and Brandon were good sports throughout the game.

While Mattie was busy, I had a surprise visit from Charlotte's mom, Ellen. Ellen and her family just got back from a trip to England last night, and I am honored that she would visit me when I know she had to be jet lagged, with a lot to catch up on. Ellen brought me a wonderful hot tea and chocolates from Harrods in London. Thank you Ellen for the nice visit, it was great to catch up.

Later in the afternoon, I attended another HEM/ONC parent support group. Different people attended today's group, but again, it was interesting to hear the issues others are dealing with. The irony is every time I introduce myself and explain to the group what Mattie is dealing with, you can see people are in shock. I think cancer is horrible, but combine cancer with massive surgeries and it is a parent's worst nightmare.

I did not meet with the thoracic surgeon today that I spoke about last night, however, I did have an opportunity to informally chat with Dr. Chahine. Dr. Chahine works out of Children's Hospital and Georgetown. I am familiar with Dr. Chahine, because he is the surgeon who placed Mattie's central line in his chest. I explained to Dr. Chahine that Mattie will need lung surgery in May or June. I was under the impression that Mattie's surgery was going to be laproscopically. However, after Peter sent Dr. Bob an e-mail, I quickly could see that in fact Mattie's surgery would be much more invasive. Mind you Dr. Chahine hasn't seen Mattie's scans yet, but based on what I was telling him and the small nature of the lung lesions, he doesn't think that laproscopic surgery will be an option. He feels that Mattie will need a thoracotomy. Why? Because the lesions may be too small to capture through laproscopic procedures. In addition, Mattie could potentially have other lesions in his lungs that are too small to show up on a scan. So the only way to remove all possible lesions is to collapse the lungs and manually feel each lobe for lesions. This can be done two ways, in which incisions are made through Mattie's sides or by through the chest cavity, which would mean cutting through the sternum. He told me more, but I will spare you the details. Needless to say, after this hallway conversation I was deeply saddened. Dr. Chahine told me this is major surgery, with a long recovery time, and it is painful. All devastating news to a parent, a parent who has already observed great suffering in her child. I am not sure what I am more upset about. The fact that Mattie needs this surgery or the fact that I was led to believe that this surgery was going to be laproscopically. This news has clouded my whole day, not that I need any more clouds. We have plenty over our heads already! But how do you plan a summer, plan for intensive physical therapy, while attempting to reclaim your life? The answer is you CAN'T! Our life is filled with uncertainty, with no end in sight.

At around 5pm, Linda, Whitney, Lesley, Brandon, and myself wheeled Mattie down to the physical therapy gym. On our way down, we ran into Susan DeLaurentis, Mattie's Director of School Counseling at St. Stephen's. Susan brought Mattie a wonderfully large and colorful butterfly balloon. It is very special, along with a fabulous singing birthday card that was signed by several of Mattie's friends and teachers! The song playing inside the birthday card is the hamster dance. If you haven't heard this song, you are in for a treat. Click on this youtube link

http://www.youtube.com/watch?v=76HcLEunsws

Left: Mattie with his butterfly balloon and singing birthday card!

Susan stayed with us through Mattie's physical therapy session, and she had the opportunity to see Mattie's progress. I think some pictures will help you see what Mattie was up to in therapy!

Left: Mattie swinging on a platform swing. IV and all!

Right: Mattie climbing through a tunnel!

Left: Mattie is using both of his arms quite well and bending his knees to pick up blocks to form a wall!

Right: Mattie couldn't wait to knock the wall over on Linda, Susan, and Anna! Despite getting hit with blocks, everyone cheered and was very proud of Mattie.

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.

After therapy, Mattie, Linda, and I headed back to the PICU. Susan gave Mattie a beautiful loaf of bread and container of creamy butter. This made Mattie's evening. He literally ate four pieces of bread with a lot of butter. It continues to be Mattie's meal of choice this week! Thank you Susan. We also want to thank Kristin Emory for visiting today and for her wonderful dinner. Her chicken was delicious and she brought me my favorite salad, arugula! Thank you also for the cheesecakes and happy meal for Mattie!

I end tonight's blog with a message from my friend Charlie. Charlie wrote, "Tuesday's blog spoke to me of promises made and not kept and those which were, even past the point of expectation. Dr Cox did the right thing with his efforts to procure the medication for Mattie; however, I hope he sees that this process should not take the head of pharmacy, there are not enough hours in the day for him to run around and personally procure medications that are needed. This is a broken process and it needs to be fixed; when someone identifies a medication that is required for a patient and the stock is low, a reprocurement process should start and that means finding solutions to supposed shortages ahead of time. On the positive side, it is wonderful to see Mattie regaining his physical agility, to become more willing to try physical challenges and to continue to progress on the social level as well. I think that those of us who are able bodied don't appreciate how much effort all this takes. He can do this only because you and Pete are there to be his safety net; he's tried that net many times and knows it will hold him so his confidence level continues to improve. I know and share your concern about the thoracic surgery but I feel Mattie will come through like the trooper he is. However, I will continue to pray that the chemo makes the surgery unnecessary so that Mattie's healing can continue at this same great pace."

Tuesday, March 31, 2009

Tuesday, March 31, 2009

Quote of the day: “You've done it before and you can do it now. See the positive possibilities. Redirect the substantial energy of your frustration and turn it into positive, effective, unstoppable determination." ~ Ralph Marsten

As I assumed, Mattie was in no mood to take the oral vistaril at 2am today. I woke him up to use the bathroom at that time but he refused to take the medication. I did stay up until 2am, because I felt compelled to see how Mattie was doing and to potentially try to give him his oral medication. Mattie was consistently up every two hours, and by the time Peter woke me up at 6:30am, I did not know what hit me. I sometimes wonder why hospital employees can't understand why I am so tired. I almost wish in a way I could videotape my life, because in so many ways it is hard to fathom what we deal with in one day. We deal with Mattie's non-stop care and treatment, but being six, we are also dealing with his constant need to play and inordinate amount of energy!

This morning, Mattie was exhausted and he stayed asleep until around 11am. When he woke up he looked like he was dazed and wiped out. He did eat his oatmeal, and then one of Linda's interns, Laura, came in to play a "worm" game with Mattie. Mattie greeted Tricia, one of his favorite HEM/ONC nurses, and had his vitals checked. Then he was off to the playroom. Once he left his room today, he never looked back. He had an extremely busy day.

While Mattie was sleeping this morning, I spoke to Tricia about the Vistaril shortage. She told me the residents would come and talk with me and they would have someone from pharmacy visit me. Well the seconds of waiting turned into minutes, and then an hour. I am certainly patient on many fronts, after all during check in days alone, I wait almost 10 hours for Mattie to begin chemotherapy. But with issues such as following up on medications and hospital personnel networking, I have very little patience. So I called Gail Chisholm, my patient advocate. She gave me the name and phone number of the head of pharmacy at the Hospital. To my surprise when I called Dr. Jeff Cox, he picked up the phone and took the time to talk with me. He heard my concern and was upset with the run around I was getting. He promised to investigate the situation with Vistaril, and would get back to me in two hours. Guess what? Not only did he call me back in two hours, but he went above and beyond the call of duty. He started calling around other local hospitals, and connected with the head of pharmacy at another hospital. He arranged for this other hospital to give Mattie five vials of IV Vistaril. But he wasn't taking a chance on the medication's delivery, and literally drove to the other hospital himself, picked up and secured the medication for Mattie. Here is another example of another outstanding department head at Georgetown Hospital. Dr. Cox is my hero for the day. He listened, understood, and his actions matched his words! Now if I could pick up the phone and get this Vistaril issue addressed in less than a day, it makes you wonder why Mattie's doctors could not? Should I as the parent have to take on this stress of securing medication? I think the answer should be no. I think what builds trust for me in Mattie's doctors is a level of commitment and advocacy for Mattie, and when I don't see it, I start questioning everything. If they can't advocate for medication, what else on earth aren't they advocating for? I wish I wasn't this suspicious but as a person who has studied human behavior for some time, I can't help but see a pattern developing.

This afternoon, Mattie played with Linda and Mary (a wonderful volunteer, who you may recall was involved in our strolling ABBA hallway performance last week). While Mattie was with them, I went to the HEM/ONC parent support group. It was an interesting session, and it is always enlightening to hear what others are dealing with and how their family is adjusting. That term, "new normal" was used in the session. A term that should be permanently removed from the cancer lexicon. There is NOTHING normal about your child having cancer and each time I hear this propaganda, I want to scream. I think this is a principle propagated by hospital personnel to force us into compliance or acceptance. I am not sure a parent can ever truly accept having a child with cancer, I frankly think it is more a process of adjustment. I also find attending a support group rather challenging. It is hard to step out of my need to help others and instead serve as a participant, but none the less through helping or listening, I find I do feel better.

When I reconvened with Mattie, I found he was playing with Brandon, Mattie's big buddy. Brandon had his three month scans today, and is doing very well, thank goodness. Mattie had a great time with Brandon. They played with model magic, and a submarine, which Linda gave Mattie. Brandon is coming back to the hospital to spend more time with Mattie on Wednesday, which will be lovely! Jey, Mattie's "big brother," also came to visit with Mattie, and they started talking about Mattie's birthday, snakes, roaches, and April fool's day! In fact, Jey joked about getting Mattie a roach farm for his birthday. I got a huge chuckle out of that notion! I enjoyed chatting with Brandon's mom and especially enjoyed her wonderful cookies she shared with us.

Later in the afternoon, Anna, Mattie's physical therapist, came by to work with Mattie. Meg joined us for our physical therapy adventure today, Mattie left the fifth floor and went to the PT gym! On our way off the fifth floor, I snapped some great pictures of Mattie standing and then knocking over a pyramid of cones.

Left: Mattie waiting patiently to knock over all the cones!

Right: Tricia (Mattie's HEM/ONC nurse) is in the background, and Anna is on the right hand side of the picture watching Mattie's progress. Mattie did a great job knocking all the cones down with his bionic leg.

When Mattie, Meg, Anna, and myself arrived at the PT gym, Mattie was very excited. He spent a great deal of time checking everything out. It was like a kid at a toy store. I wasn't sure what to make out of this, but Anna later told me she was thrilled to see Mattie's excitement for exploration. She said this was a very good and positive sign. After all, this is how children understand their world, through touching things, observing them, and incorporating them into play. I am happy she pointed this out to me. While in the gym, Mattie literally walked, rode a scooter and a swing, and attempted to climb a ladder (as you can see in the picture). You had to watch this process. Anna was holding Mattie, I was holding Mattie's IV line and Meg was holding the swing. We are quite a team. But one thing is for sure, Mattie was eager to try all the activities he once loved, and activities that would be typical for a six year old to partake in.

After therapy, Mattie and I came back upstairs, he was examined by the doctor, and then we went right back out into the playroom. We played a board game together, and even made up a story, with his newest and most disgusting character, Poop Man. Fortunately the story also had a character named Super Mattie, who saved the town from Poop Man.

Peter arrived after 7pm today, and he helped us back to the room. We had a nice dinner thanks to Gibby E. (Mattie's school librarian). Thank you Gibby for supporting us this week. After dinner, Mattie pulled out his leapster. A major first, but I think he needed some quiet time to unwind after a very busy day. Now Mattie and Peter are working on a lego project!

Recently I have come to learn that several osteosarcoma families across the country and in England are reading Mattie's blog. I am not sure why this surprised me. Maybe because I can barely handle my own story, my day to day existence, and therefore can only track a few other families that I know. For my own personal health, I feel that I have to protect myself right now. But other families do reach out on a daily basis and have the inner strength to hear and share their stories. It always pains me to hear how many other young people are dealing with osteosarcoma and each story is so different and profound. But there is one commonality. These children and their family members are courageous, inspiring, and committed to restoring health to their children. Unfortunately though, as I read more osteosarcoma stories, I realize not all the stories have a positive ending. I suppose this is a risk with any form of cancer, but osteosarcoma seems to be a particularly deadly disease. I have been particularly concerned about Mattie's pending lung surgery that will take place after his chemo ends in May. I had the good fortune to bump into Dr. Shad, the HEM/ONC director, tonight, and what I love about Dr. Shad is she has no reservation about picking up the phone and calling other doctors on our behalf. She called the head of thoracic surgery at Georgetown, and this doctor will be coming to see me tomorrow. She even told Dr. Shad that she would perform Mattie's surgery if Peter and I are comfortable with her doing so. Not to say that we will go with this surgeon, but I am happy to be consulting with a thoracic surgeon now to get a feeling for the extent of Mattie's upcoming surgery. God how much surgery can one six year old possibly have?

I would like to share a message I received from my friend Charlie. Charlie wrote, "I would title Monday's blog, "the revenge of Monday!" How frustrating to see that not only has nothing changed in the way the hospital does business like admissions but that a clearly foreseen problem with an identified solution has not been tackled. I am sure they would have ended up taking me off in restraints had I faced what you did yesterday. To allow a patient to go without needed medication when a source has been identified in sufficient time to make the transfer is negligence and malpractice on the part of the hospital and especially the pharmacy. Perhaps it is time to start using those words to the patient advocate and asking if they need the "intervention" of some publicity about the lack of support to patients. Frequently this "offer" will get things moving when being a compliant patient or parent will not. I was really hoping that this admission would start off on a positive note but it appears that was not to be. With the chemo not ending until 1:30 or 2, I expect that you had little or no sleep last night and I am sorry that happened. I hope Mattie wakes in a good mood, regardless and enjoys his day with the staff."

I end tonight's blog with a wonderful story that Charlie sent me today. Sometimes it is hard to understand why things happen, and I can assure you while going through this special kind of torture, I wonder what the life lesson really is.

Two traveling angels

Two traveling angels stopped to spend the night in the home of a wealthy family. The family was rude and refused to let the angels stay in the mansion's guest room. Instead the angels were given a small space in the cold basement. As they made their bed on the hard floor, the older angel saw a hole in the wall and repaired it. When the younger angel asked why, the older angel replied, "Things aren't always what they seem." The next night the pair came to rest at the house of a very poor, but very hospitable farmer and his wife. After sharing what little food they had the couple let the angels sleep in their bed where they could have a good night's rest. When the sun came up the next morning the angels found the farmer and his wife in tears. Their only cow, whose milk had been their sole income, lay dead in the field. The younger angel was infuriated and asked the older angel how could you have let this happen? The first man had everything, yet you helped him, she accused. The second family had little but was willing to share everything, and you let the cow die. "Things aren't always what they seem," the older angel replied. "When we stayed in the basement of the mansion, I noticed there was gold stored in that hole in the wall. Since the owner was so obsessed with greed and unwilling to share his good fortune, I sealed the wall so he wouldn't find it.." "Then last night as we slept in the farmers bed, the angel of death came for his wife.. I gave him the cow instead. Things aren't always what they seem." Sometimes that is exactly what happens when things don't turn out the way they should. If you have faith, you just need to trust that every out come is always to your advantage. You just might not know it until some time later...

Monday, March 30, 2009

Monday, 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

Sunday, March 29, 2009

Sunday, 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/