Saturday, October 18, 2008

Saturday, October 18, 2008

Mattie literally popped up this morning, but when he discovered that Peter and I weren't in the room, he landed up crying. Since Mattie has developed cancer, I have noticed he doesn't like to be left alone. While at home, he wants Peter or I by his side all the time, so much so, that he can't even sleep in his own room anymore. So when I heard him crying, I went back into our bedroom, and sat with him for a while, to review our day ahead. He listened and then reported he was hungry and wanted waffles. So we went downstairs together and he helped me make homemade waffles. He literally ate almost two big waffles. Then he got dressed and was awaiting his first visit from Ms. Caroline Eaton. Ms. Eaton is a fourth grade teacher at SSSAS. I remember last fall having the opportunity to listen to Caroline during SSSAS' lower school chapel service. Caroline told the students of her battle with illness, the unexpected surgery she had to have over the summer, and the important life lessons she has learned from her struggles. I found Caroline's talk so meaningful, honest, sensitive, and empowering. I can only imagine her skills within the classroom. When Caroline contacted me after hearing about Mattie's illness, I jumped at the chance to connect Caroline with Mattie. I feel that Caroline also understands what Mattie is up against, and I loved hearing what role music has played in her life, and I welcomed her offer to help bring music, specifically the piano, into Mattie's life. When Caroline arrived, Mattie was in a shy and timid mood, which changed into a bit of an agitated mood. Caroline handled all of this beautifully and worked very hard at getting to know Mattie. They started playing on Jerry's keyboard, and eventually migrated to our spinet piano. Caroline gave Mattie Alfred's Basic Piano book, which appears to be a wonderful method that Mattie caught onto. Both Peter and I got involved with the process, and we even sang a couple of little songs as Mattie played the piano. Playing an instrument is such a gift, and it is my hope that Mattie will embrace this opportunity. Thank you Caroline for your generosity of time, skills, and spirit.

At around 1pm, Ms. Debbie Pollak came for a visit. Debbie is Mattie's art teacher at SSSAS. I alway tell Debbie that she inspired something inside of Mattie last year, because since he entered her classroom, he has been very focused on art and creating (which in my opinion, is a wonderful passion to follow!). Debbie is a major Mattie supporter, she writes to both of us on a regular basis, and what also impresses me about Debbie is she has a heart of gold. Besides being a dedicated teacher and artist, she also is a caregiver for her mother, and many others in her life. She is very selfless with her time and energy. You have to admire someone who can give out this much love and not expect much in return. Rather a unique quality in the world we live in. Debbie came over today, and transformed our home into a Native American experience. She brought several CDs of Native American music, several books, including two wonderful stories retold by Tomie dePaola: "Legend of the Indian Paintbrush" and "The Legend of the Bluebonnet," which she read to Mattie. Mattie was sitting very still and listening to each of the stories. It was very clear that Mattie is very fond of Debbie and she has a way of capturing his attention. Debbie gave Peter and I the opportunity to go out to lunch (thanks Mommy and Daddy for a nice lunch), while she did some fantastic art projects with him. Mattie learned about Kachinas. These are actually stylized religious icons, meticulously carved from cottonwood root and painted to represent figures from Hopi mythology. For generations, these figures have been used to teach children about their religion and culture. Debbie showed Mattie two kachinas she has, as well as some other wonderful Native American pieces she has collected. While we were gone this afternoon, Mattie painted a picture of Tawa. Tawa is a kachina and the god of the sun, justice, and victory. In addition, he made a dancing figure, which he entitled, "Chief dance a lot," and a beautiful prayer feather. See the pictures below of these fabulous creations. I realize I am biased but they are beautiful.

Lt: Debbie and Mattie discussing the meainging of Tawa!
Rt: Mattie's painting of Tawa

Lt: Chief Dance A lot!

Rt: A prayer feather, used in a prayer ceremony, and passed around the group as a prayer is said.

Thank you Debbie for coming over today, for giving him lunch, reading him stories, and helping to create some wonderful pieces. Your visit was greatly appreciated!

Mattie had a visit today from JJ, who brought over a box of Dunkin Donuts. JJ knows the way to Mattie's heart. Thank you JJ. Later in the afternoon, Mattie had a visit from his buddy, Zachary. Zachary brought Mattie some cute halloween items, which we are all enjoying. Thank you Katie and Russ (Zachary's parents) for a lovely dinner. You spoiled us tonight with some wonderful foods. Mattie devoured the spaghetti, which is still the food of choice this week! It was wonderful to catch up, and though Mattie and Zachary do not see each other as often as they used to, it is amazing to see that their interests are still the same. They are both very interested in legos and they built a wonderful city together tonight. See below.

The humor for the evening was watching Peter attempting to locate the Red Sox game on TV. Apparently TBS had some technical difficulties, so the game couldn't be aired for 30 minutes. I thought Peter was going to explode. He started calling his brother in Boston and even a couple of his friends to see if they were able to see the game. Finally he called Direct TV. By the time Peter was finished with Direct TV, he got $15 taken off our bill. It was a sight to see, and at one point Mattie and I were looking at each other and laughing over how insane this is, to be yelling over a Red Sox game. Also, Pete wanted me to remind everyone that the Red Sox DID WIN game six against the Rays, which forces a Game 7, from which the winners will go on the play the Philadelphia Phillies in the World Series, and the losers will start their five month vacations. Go Sox!!

Mattie and I had an opportunity to take a walk today to collect leaves. Mattie loves to do this, and he is creating his own harvest table decoration on our patio. You can see this picture below. However, what amazed me is while walking and holding hands, Mattie stopped and said to me, "look at that beautiful flower." In the midst of a bunch of ivy, Mattie was correct, a beautiful purple flower was blooming. I mention this because I did not even notice the flower, I would have walked right passed it. But Mattie not only spotted it, but forced me to stop and look at it. I tell you this story because Mattie this weekend is enjoying the moment, so much so, that he is observing everything around him, like the flower. Whereas, my head is heavy, I am preoccupied about monday, and can't help but feeling as of monday nothing will be the same. Mattie did ask me a question today, he wanted to know if he would have died if he did not get the chemo. So we talked about that, and I told him most likely he would have gotten much sicker and could have died, but fortunately he is taking the medicine and now we will be removing all bone bug homes starting on monday. He seemed happy with that response, but it is the beauty of talking to a child about a serious issue. He comes in and out of the issue, and doesn't focus upon it 24/7 like an adult. Thankfully!

I want to share an e-mail I received today from Nancy. Nancy is a mom of an osteosarcoma survivor (who was a patient of Bob Henshaw). Nancy wrote, "I so enjoy reading your blog (I actually go onto the website before I go to bed, each night!). I have to share with you - when you mentioned the part about Mattie wondering why all the attention.........when Brian got diagnosed, EVERYONE was willing to help and initially I turned them all down. Obviously, extremely grateful for their generous offer. I guess I was too proud to accept help! Afterall, I am a mother of five....I can do ANYTHING! But the more I prayed on this issue - I found myself saying yes more to the offers. People (whether or not we knew them) felt the need to help....in anyway possible...meals, prayers, driving other children to and from activities, Costco runs, etc., it helped THEM deal with Brian's situation. Even to this day, I have community members (most I know, some I have never met) come up to me thanking ME for allowing them to assist our family, in need. This reminds us that we are a community (a FAMILY) and when one person is down.....we all need to rally together!" I think Nancy captures what amazes me. The incredible response from our community, I can't get over how all of you are rallying around our family, and we are in awe and are very grateful. My friend Susan said the same thing that Nancy is writing about. That we are giving people a special gift, the opportunity to help and get involved. I never looked at it this way before, mostly because I am too absorbed about the burden it places on others.

On the electronic front, we want to thank Grammie for her e-mail of wonderful animal pictures and Kim, Brian Boru, Susan S., and Karen for their wonderful e-cards! As I sign off tonight, I want to say thank you for all your constant support. I have no insecurities about telling you that I am very scared regarding monday. We plan on making Mattie's sunday fun, before we check into the hospital sunday evening. As always keep us in your thoughts and prayers as Mattie heads into a very challenging week!

Friday, October 17, 2008

Friday, October 17, 2008

This morning started with the massive scramble of packing up the hospital room, and transitioning home. Certainly a wonderful problem to have, but after several move in and move out dates since August, the whole event gets wearing, and it is an event! Mattie's nurse Miki helped to discharge us. Miki is a VERY special nurse and person. She always advocates for Mattie and for us, and we always know we are in good hands with her. She appreciates Mattie for who he is, his interests, and even his moods. What I find so amazing about Miki is that she truly cares about us and does her job with both skill and compassion. Today Miki handed me a prescription that was written for Mattie to take at home this weekend. The prescription was for dexamethosone. This is a steroid that is used in the treatment of nausea and vomiting caused by chemotherapy. Any case, Mattie has been on the steroid all week to help prevent emesis. What I found out though is once on a steroid, you have to taper down the dosage, because it could cause ill effects if you stop taking it all at once. Mattie's dosage has been tapered off for the past two days at the hospital. In my opinion enough was enough, and I did not want him to take anymore of it. I feel the steroid plays with his mood and personality, and since Mattie did not have to take the steroid last weekend at home and he was fine, I felt there was no need for it this weekend. So I told Miki I wasn't happy and wanted to talk to the doctors. Miki was on top of it, and tracked down the doctors. I discussed my concerns with the resident, Dr. Cantor, who has been through Mattie's treatment process with us from day one. Guess what, do you think Mattie is taking the steroid this weekend? If you guessed not, then you guessed correctly!

We headed home and started sorting and unpacking things! Mattie decided to take it easy, but was starving and requested homemade pancakes. I stopped what I was doing, ran out to get eggs (but being in the city, running out means a short hop and skip to pick up eggs in our complex), and then came home and started cooking. Mattie ate four huge pancakes. Then he was very motivated to get washed up and dressed because he was going to Charlotte's house for a playdate. He even brought two of his new toy cars to Charlotte's because he wanted her to see them. Mattie has remote control cars that climb walls and can also drive on the ceiling. Totally amazing stuff! Mattie spent the afternoon with Charlotte, and Ellen (Charlotte's mom) gave me a huge gift of time. I went out to lunch with my parents and had the chance to eat food without having to rush and swallow it whole! There is no peaceful eating at the hospital. As I put myself in Ellen's shoes today, I would imagine I would have been very nervous to be solely responsible for Mattie. Afterall, he is six, and he wants to swing, jump, run, and so forth, all of which needs to be supervised so he doesn't fall and hurt himself. Mattie in a way is a big responsibility to take on, but Ellen embraced this opportunity and clearly Mattie had a blast. Thank you Ellen for your willingness to do this, for giving me a moment to breathe today, and for being such a good friend. Ellen reported that Mattie ate quite well this afternoon too! Music to our ears. When I came to pick up Mattie, Ellen told me that St. Stephen's football practice was taking place and wondered if Mattie wanted to go see the team as well as Head Coach Dave and Coach Jenney. Mattie was hesitant at first, but then decided he wanted to go. When we arrived at the upper school, Coach Dave spotted my mom and he instantly knew that Mattie had to be on campus. Coach Dave gave us a huge greeting and spent a lot of time talking with us. Dave is a very special person and coach, and I told him it meant a lot to me that he supported my decision to tell Mattie about the pain and immoblity he was going to be experiencing next week. The team took a break for a few minutes, and each of the players came up to Mattie and shook his hand. It was priceless, and then the team agreed to a group picture with Mattie. These fellows are quite an impressive group of young men, who happily complied with our desire for a photo, and even told Mattie how proud they were of him. You can see the picture of the Saints team below. Quite a picture, no?! There was an overwhelming level of energy and spirit I felt just being next to this group of guys.
After the photo was taken, Coach Dave lead the team in a cheer. Coach Dave said, "one, two, three," and the Team responded back by SHOUTING "Mattie!" It was a sight to see, and I got it on video tape. Mattie watched it several times tonight! In addition, Mattie got the chance to see Mr. Larry Jenney. Larry is a coach on the team, and is one of Mattie's kindergarten teachers from last year. Mattie was very happy to see Larry and as always it was wonderful to reconnect with this very talented teacher. Dave and Larry are incredible role models for these young men, because they are bright, dynamic, strong, and at the same time sensitive men. I told Dave, he is giving me a greater appreciation for football.

After this amazing team experience, Mattie and Charlotte were running around the fields at the upper school, simply enjoying the freedom and each others company. Below you will see a picture of them running around. For me, it was a joyful sight to see, in the midst of a difficult week. Seeing Mattie run around is glorious and at the same time frightening. It takes a lot of discipline for me not to panic when I see him running, or climbing the bleachers in croc shoes of all things (NO support!). I have seen what happens when he scrapes his knees, and it is a scary picture. But I know that he needs a certain amount of freedom, and I also know that he is very cognizant of his body. So part of me has faith in him.





Mattie and Charlotte running around!







Mattie and Charlotte gave each other a huge hug before the playdate ended, and we headed home and then my mom played with Mattie for several hours while my dad and I dealt with the laundry. There is something very satisfying about completing such a mindless task. Then we all convened and had dinner together. Thank you Liza May and Jennifer Greiner for all the wonderful food you brought to us today. The salads, soups, pastas, and breads are all finished. Jennifer, Mattie loved your ghost cookie, and Liza, the Saints brownies are VERY special. The perfect gift for a chocoholic!

We had a visit today from JJ (our resident Jack Russell Terrier)! JJ somehow senses when Mattie is back home, and he came racing down to see Mattie. JP, JJ's owner, told me that his mom (Jacky) in Spain has arranged a perpetual novena to St. Rita. St. Rita is the patron saint of impossible or lost causes. JP's mom prayed to St. Rita when JP developed polio as a child. Needless to say, Jacky's prayers were answered and JP survived polio. Jacky has been praying for Mattie each day since he was diagnosed. Thank you Jacky!

There are several people we want to thank today. Ellen gave me two large tupperwares full of homemade soup. She told me that Candice made the soup for us. Though I do not know Candice, I am so grateful that she shared her time and generosity with us to make these soups. We will thoroughly enjoy them. Mattie received a lovely gift from his friend Liliana. Thank you Liliana for the great photos of you, and the halloween gifts. We really loved the gummy tarantulas and guess who loved the chocolates? We also want to thank SSSAS' french club for their donation to the Mattie fund. That was very special, and I have a feeling Liliana's mom (SSSAS' upper school french teacher), played a hand in this! Mattie wants to thank his feline friend Brian Boru. Brian always picks out great gifts. We love the cribbage board, the dino books, special bookmarks, and the airforce water bottle. Also Mattie acquired a Big stuffed JJ today from our neighbor, Cynthia. We can't wait until the real JJ sees the stuffed animal. Lastly, we want to thank GW's Columbian Women for their cards, gifts, and the classic Animal Stories book we just received.

It is a rather sad commentary these days, but life is so busy and Peter and I are going 100MPH, that sometimes our meaningful communications occur now through e-mail. Since Mattie is up at all hours, and we are usually in a hospital setting, it doesn't leave much time to connect, talk, and process things. Fortunately Peter and I have been married for 13 years and have known each other a total of 21 years, otherwise, I could see this crisis with Mattie could easily do a number on a marriage. Peter wrote the following below:

"Sunday night, I slept only one hour, and around 4am my time, one of my team members, Supo, in Nigeria (which is 5 hours ahead of us), Skyped me asking if I could have a quick call with him… something personal. Of course I said yes, since I need to support a team member regardless of the geographic distance between us, so Supo called me, and asked if we could pray. Supo said a beautiful prayer to our lord almighty for Mattie and for his parents, to give us strength, to send his support in his many messengers, and to surround us with his love. Although the call took only 2 minutes, I found myself still processing this once we hung up and continue to do so. This experience gave me hope… that such unusual circumstances, me being sleepless all night, and a friend from afar, should reach out to me, and that we had perfect connectivity between Nigeria and the US (which is rare to find), and to receive such a wonderful message. It was a reminder to me that Mattie must be among divine intervention, and that the lord has heard all of the prayers of love and support and help for Mattie. It was almost as if a message had been sent to me through Supo."

As many of you know, I have spent a couple of nights this week sleeping at home, while Peter stayed in the hospital with Mattie. Peter wrote to me this morning and said, "for three nights in a row now, including tonight, Mattie and I have had some very serious and mature conversations about his situation. He and I has spoken about the surgery, the new bionic arms and leg. He is definitely comfortable with things now. He even asked me tonight why the wrist wasn’t getting one too. It was almost as if he was disappointed. We have talked a lot about the cuts, the pain, and that things will take time for him to get his strength and movement back in his arms and leg. He even chuckled when I told him that once the metal bones were in his body, that he probably set off the metal detectors at the airport. He got a huge kick out of that. I also showed him where his metal bones will be and explained how the graft would work taking bone from the leg to use in the wrist. So I hope this is helping as he seems comfortable talking about it."

I received this lovely e-mail today from Emily W, which I would like to share with you. Emily is a graduate of GW and also babysat Mattie on many occasions. They became good buddies. Emily wrote, "Mattie is in fact my superhero...he's my Mighty Mattie...but do you know how Mighty Mattie became so Mighty??? He got it from his.....
MIGHTY MOM!!!
Just wanted to make sure you knew where real superheros came from....in case you didn't already know..."

On the electronic front, we want to thank Kim, Karen, and Susan for your wonderful e-cards! As we head into the weekend, I am trying to plan a lot of fun activities for Mattie before he heads into surgery on monday. The irony is Mattie said to me tonight, "I was in the hospital this week, why didn't they do the surgery when I was there?" He seems ready for this now, but I am noticing Mattie is also struggling as he tries to understand why he is getting so much attention from everyone. He questions why this did not happen before he was sick. So we are working through the issues associated with this specialness. In any case, thank you for staying connected with us, for following the blog, and for all your good thoughts, hopes, and prayers as we head into monday!

Thursday, October 16, 2008

Thursday, October 16, 2008

Thank you Leslie and Mike for the wonderful book of Hope quotes. Today's quote: Courage is doing what you must, when doing what you must, is the hardest thing of all.

Before I begin telling you about Thursday, I was remiss last night, because I forgot to share with you that Ms. Mary Dressendorfer, Mattie's technology teacher, came to visit Mattie wednesday afternoon. Mary visits Mattie every wednesday. Mattie was in a bit of a mood, but Mary went with it, sat with him, admired his art projects, and eventually he warmed up to doing computer time. While Mary was with Mattie, my mom and I went outside, and it was a lovely break. Thank you Mary for this opportunity and for also sharing with Mattie the wonderful book of funny faces created by Mattie's friends using the photo effects shop on the Mac. The pictures are hilarious. This is a special book, and we also love the printouts of Mattie's face.

If you recall Mattie received a wonderful keyboard from Jerry last night. Jenny took a great picture of Mattie playing the keyboard wednesday night, and I wanted to share it with you. I am saddened I missed this moment, but I am so happy Jenny captured it for us.

Mattie woke up this morning and was quite grumpy and moody. This is becoming a regular occurrence. He let me know that he refuses to eat all hospital food now. He tells me it doesn't taste like "Mommy's food." Thank God, otherwise, I would immediately be signing up for cooking lessons! I could tell Mattie did not want to be in the room. So I helped him put on his robe and shoes, and I grabbed a Donut for him from one of Mattie's gift boxes he received yesterday and we left the room and went walking. I knew exactly who Mattie was looking for. He was looking for one of his childlife girlfriends (Linda, Whitney, or Lesley). To his dismay, he couldn't track one of them down, so I encouraged him to walk further with me and sit on a bench and eat his donut. So he followed along, and we sat together. What transpired was what I call a teachable moment. You know as a parent, these moments are fleeting, and they don't happen often, but when the stars and planets align, you seize the opportunity. Mattie was sitting next to me calmly, and snuggling up to me. He was eating his donut, so I just started talking. I told him how proud I was of him, how I think he is a very brave and courageous boy, and how he is my one and only special boy. He continued to listen. So I started to talk about surgery. I told him the story of my experience with surgery. Mattie knows that I had a c-section when he was born. So I told him that after I had surgery I wasn't feeling well. I was in some pain and in fact, I had trouble moving and walking around. But then I asked him, how did I turn out? Do I look like I am in pain or have trouble moving around now? He answered no. So I told him, the same thing would happen to him, that it is natural to have pain after surgery, but there are medicines you can get to help with the pain, and that he would have to keep his arm still for several weeks because it would need to heal. He was taking all of this in. I reminded him of what the ultimate goal is, to feel better and remove all the bone bugs so he could lead a healthy life. He said he was going to die, and again I said to him, we are all going to die eventually, but that wasn't going to happen to him now. I then moved into the fact that after the surgery he will be my bionic boy. That he will have stronger bones than anyone I know. He seemed to like that idea and then asked what if someone bumped into him at school with his new bones? I told him they better watch out, because his bones will be so strong, the other kids may bounce right off of him. Well he thought that was an absolute riot! I felt that I conveyed the point about pain and mobility in a meaningful and respectful way. After our conversation, we started walking again, and this time bumped into Anna, Mattie's physical therapist.

Anna convinced Mattie to take a walk down to the PT office, where all the equipment and games are located. Mattie was hesitant, but he did go. Once in the PT room, he looked around, but he was pretty much focused on returning back to the childlife area and PICU. Anna understood and followed Mattie's cues. Anna tried to show Mattie how to do some simply pendulum exercises with his arm, but Mattie told Anna he was bored and that he already knew these exercises. Which of course he doesn't. I feel a little frustrated by Mattie's reaction, because I know PT will be key to him regaining motion and strength. But then I take a deep breath, and realize one step and hurdle at a time. After our meeting with Anna, Whitney came to find us and brought Mattie to the childlife playroom. Mattie had a day of creativity. In the playroom today, he worked on his halloween costume (which we are not sure how he will wear it yet), created an IV pole creature, and even participated in a science lesson today about creating bubbles using glycerin and dry ice. See some great pictures below.

Mattie designed another haunted house. He plans on using this somehow as his halloween costume.

Mattie was inspired to create an IV pole creature after seeing Brandon's creation of Wall-E on his pole. Mattie's pole creature is a caterpillar named Smiley. Thanks Jenny for helping with this project.

Mattie holding a dry ice/glycerin bubble! He was fascinated!

While Mattie was busy with lots of activities (thank GOD for this childlife playroom, it is absolutely vital and fantastic!) I had a lovely visit from my college friends, Leslie and Mike. Leslie was my freshman year roommate, and we have stayed close since. Leslie and Mike brought Mattie a vanilla shake and lots of wonderful gifts, such as illustory. Mattie will be able to create his own story and then I can send it into this company and they will bind the story and pictures, like a real published book. Lord knows we have a lot to write about these days. Thank you also for the Hope book. I love it. It was wonderful to see you, and wish we lived closer to each other.

Around lunchtime, Ellen visited. She brought me a lovely lunch, which we had together in the parent lounge, while Mattie was with Linda. Linda even took Mattie outside for fresh air and they launched rockets by foot. He loved it, and then went to visit Jenny in the clinic. Litearlly he got around today, to see all his favorite women! Ellen and I talked about a lot of things, which is nice, because I feel so unifocused these days. I feel like I am always in crisis mood, and in the midst of crisis mood, you really lose who you are. Thank you Ellen for the wonderful food, the happy meal, and the tasty cakelove cupcakes.

Later in the afternoon, Mattie had a visit from Mrs. Joan Holden (SSSAS' head of school) and Mr. Bob Weiman (SSSAS' head of the lower school). Both Joan and Bob have been incredibly supportive and Joan brought loads of Saints gifts for Mattie. Thank you for the Saints stuffed lion animal, the Saints hat, and water bottle. The lion is sitting on Mattie's bed tonight. Bob shared a new magic trick with Mattie today. All the kids in the childlife room were intrigued and then wanted to try it themselves. Bob also gave Mattie 'Zolo a go go.' I have never seen this toy before, but it is a very creative building set, in which you can make all sorts of people and things with shapes that connect to each other. Bob then got creative and silly with the kids, and started creating pipe cleaner glasses. I took a picture of Bob in action, see below. What impresses me about Bob, is he came from a full day at school, but jumped right in, sat on the playroom floor, even took out his computer to look something up for Brandon. He is a true educator that loves children. We appreciated Joan's and Bob's visit a great deal.

Bob Weiman with pipecleaner designed glasses!

Mattie had the opportunity to play with a friend today. His buddy from RCC, Sam, came to visit along with his mom, Ashley. Sam watched the magic trick and even designed a special pinch pot for Mattie while in the playroom. Thanks Sam for bringing Dunkin Donuts, and sharing them with the other kids in the room. I think they were appreciated by everyone!

Sam and Mattie in the playroom together!

This evening I had the opportunity to talk to Dr. Synder. During our conversation, I mentioned to her Mattie's grumpiness and moodiness. She explained to me that the steroid he is taking for nausea could cause this result. I am not sure this is definitely the case, but it could explain the intense mood change I have been observing.

I want to thank Julianna, a SSSAS mom for delivering us dinner tonight. Though Julianna and I do not know each other, Mattie's situation has given us the opportunity to meet. Thank you for coming tonight and for a wonderful dinner. Mattie ate the mac and cheese and loved the adorable halloween cookies. I am still enjoying the chocolate pretzels! Thanks Mommy and Daddy for the spaghetti tonight. His favorite! Mattie had two dinners, and we are so happy we can accomodate him!

I would like to share two e-mails with you tonight. One is from a colleague of mine, Karen L. and the other is from my friend Charlie. Karen L. shared a story of hope with me. Karen wrote, "The school superintendent in our district—who both Rodney & I have gotten to know fairly well—was diagnosed a year and a half ago with a rare form of lymphoma. The diagnosis was not good with the doctor saying that at best 50% of people might make it 5 years. He was pretty discouraged by the diagnosis and felt he had a lot more to do. So, he took a year and a half off and decided on an aggressive form of treatment-including a transplant. He was very sick, lost at least 50 lbs., was not allowed to see his grandchildren (or most people) for 16 months because of the risk and was pretty isolated—tough for Mr. Social. As with Mattie, the community rallied around him. The high school kids had blood drives and organ donor sign-up events as well as informational events on how to become a bone marrow donor. To make a long story short, we saw him last night at a school dedication and he was able to report complete remission and although the doctor’s won’t say ‘cured’ they said that they expect he will stay in remission until they find a way to cure the cancer! He had also just spent the weekend celebrating his grandson’s birthday by spending the day with a new remote control car ‘trying out’ the brand new football field as their playground. And, I want to support your decision to follow your instincts (and training) to keep Mattie informed about what is going on. I strongly believe that a good mother knows what her child needs and is willing to stand firm when necessary. Remember that you are the one who has to deal with the aftermath and who he needs to be able to trust."

Charlie wrote, "In my experience as a diagnostic x-ray tech, I found that children did best when prepared for exams, surgery and such. "Protecting" them from what will happen, like trying to protect them from death and grief, never works, it just causes them to trust us less, make up their own "stories" and have to deal with things over and over again, rather than processing with us and moving forward. I know that you as both a mother and a counselor (one of the best I've ever met) instinctively know this. Follow your feelings with respect to Mattie; they won't steer you wrong. No matter how much you discuss things, not everyone will agree, but that's okay. In the final analysis, the decisions are yours and Pete's."

On the electronic front, I want to thank Kim and Karen for the wonderful e-cards and Ms. Pollak and Coach Dave for your lovely e-mails. Peter sent me home again tonight and despite having two nights of sleep at home, I still feel very tired and can only imagine how Peter is feeling working a full day and being in the hospital at night. Keep your fingers crossed that we will be discharged from the hospital tomorrow. At the moment Mattie's methotrexate level is .25, and it needs to be below .1 to be released.

Wednesday, October 15, 2008

Wednesday, October 15, 2008

Quote of the day: "Ready, set, hope!" Thanks Denise T. for this great quote that came from the Breast Cancer walk!

Peter gave me the luxury of sleeping at home on tuesday night, as I am still trying to recover from not feeling well. As I was driving to the hospital this morning, I wondered how the meeting with the doctors and Mattie's care team was going to go. Peter and I went to the meeting armed with a bunch of questions. You may be asking who was present at the meeting? Well here you go: Dr. Bob Henshaw (Mattie's surgeon), Dr. Jeff Toretsky (Mattie's oncologist), Dr. Kristen Synder (part of Mattie's oncology practice), Dr. Matt Beales (child psychiatrist), Linda Kim (Child Life Specialist), Jenny Padden (Art Therapist), Jessie Masterson (Art Therapist), Anna Fragomeni (Physical Therapist), Denise Garner (Mattie's Social Worker), and Nicole Droog (Pain Management Nurse practitioner). Bob stayed for over thirty minutes answering all our questions about pain management, how Mattie's arm would be wrapped post-surgery, what type of mobility to expect from Mattie, and a host of other questions. Bob let us know that he is already planning Mattie's second surgery and he is targetting November 12. Just in time for Peter's birthday on the 13th! Quite a gift, don't you think? But I guess if Mattie can be diagnosed with cancer on my birthday, it seems fitting based on the kind of year we are having that Mattie should have surgery around Peter's birthday! One thing was clear to me today, this team approach was VERY helpful. Peter and I assumed such team meetings were happening behind the scenes. But we learned that it doesn't. Fortunately I spoke to Dr. Shad (the oncology practice director) this week, who told me I am entitled to this type of coordination of care and helped get the ball rolling. I continue to learn strategies and better ways to advocate for Mattie, and the more people I talk to, the more ideas I get.

After Bob left the meeting, the rest of us stayed for 90 minutes more. I first have to say that Peter and I are blessed to have such outstanding support staff behind us. Where we would be without professionals like Linda, is beyond me. She helps Mattie, advocates for him and us. Today I burst into tears during the meeting, and she came and sat next to me and comforted me (NOTE: I don't want you to think I cry at the drop of a hat, but when you hear about the length of the incision on your child's beautiful body, the pain he will experience, his level of permanent immobility, and then add to that an additional surgery so soon after, which will result in Mattie having three limbs basically immobilized and producing a very unhappy six year old who won't have use of his arms and leg for quite some time until it heals, well it is HARD to take!). Linda is an incredible person, and though not trained as a counselor or mental health professional, I am thoroughly impressed with her insights, her skills, and her compassion. In addition, I found Denise's presence and guidance for in home care and support, very valuable. What helped me was Linda and Denise understood where Peter and I were coming from. They understand our need to know, to prepare, and to prepare Mattie for what is coming next week. I continue to be plagued with physicians. I am not sure why many of them can't understand my desire to prepare Mattie for the surgery. Basically I feel it is my responsibility as a parent to let Mattie know that post-surgery he will have pain (which we will be able to manage medically) and be uncomfortable. In addition, I also feel it is crucial that he knows he wouldn't be able to move his arm for a while post surgery. Mind you the psychiatrist feels that this information about pain and mobility shouldn't be shared with Mattie. Everything I am reading in the literature speaks to the importance of discussing pain with your child and what to expect in a developmentally appropriate way. My feelings were further verified today after listening to Mattie chatting with Linda and Dr. Toretsky. Mattie wanted to know why all his tumors can't be removed at one time, and then questioned Linda when she showed him the PCA machine (Patient Controlled Analgesia). Mattie did not get why he would need this pain management system post-surgery. Sure, why would he!? No one is talking to him about pain and immobility. Mattie thinks he will have surgery and the next day will feel great! I discussed this with Linda tonight, and I am going with my gut and my own clinical experiences. I won't scare Mattie as I describe what to expect, but instead prepare him so he isn't scared when he wakes up from surgery in pain and unable to move. Mind you his arm will be immoblized for three weeks! I think as a parent you have to make tough decisions. I can't live with not preparing Mattie, because what this sets up is a bad dynamic between the two of us, if I don't tell him what to expect, then why on earth should he trust me in the future? Because I know darn well he will be in pain and feel very frustrated that he can't move his arm for three weeks. I think it is not giving him much credit to think that such prep work won't help him during the recovery process. Yes he is six, but none of us like to be unprepared for major events in our lives. The lack of preparation is what is frightening, sometimes more than the event itself. Thank you Linda for setting up some surgerical supplies for Mattie to play with, for giving us a practice sling, and for showing us the video about what to expect in an operating room.

In fact, Dr. Toretsky came to Mattie's room today to do a playdough model of Mattie's arm, and then he did a little incision in the arm and placed a new bone in the arm. Dr. Toretsky was modeling what would be happening to Mattie on monday. While he was watching this Mattie wasn't startled by this at all, why you ask? Because I have used the analogy of bone bugs with Mattie from day one. I have been slowly explaining to him that the chemo kills the bone bugs, but the bugs are clever and have created little burrows or homes inside his bones. If the homes aren't removed, then new bugs can come and set up shop again. So therefore, to get rid of ALL bugs, you have to deal with their homes, which means surgery. Therefore, Mattie gives me every indication that the more prep work we do with him, subtly of course, WORKS!

While Peter and I were in the meeting, Mattie was in the childlife playroom with Lesley and his buddy, Brandon. When I came in to check on him, I found Mattie had created an amazing airplane hangar, a control tower, and runway. Below you will see some pictures of his structure and a picture of Mattie and Brandon.

Mattie had some special visitors today. Liza May came to visit. Liza is a SSSAS parent at the upper school. Liza brought with her Katie, her daughter and Katie's friend, Louise (also a SSSAS student). Both Katie and Louise are seniors and had today off from school. Instead of spending the time enjoying the glorious weather, they chose to come and visit Mattie. Liza tells me that

Mattie and my family are having a profound affect on her family. Katie is a remarkable young lady who is generating fundraising ideas to help Mattie. I am so impressed with Katie and I admire her determination and compassion, and I have to say, I am not sure I was this together when I was 17. Katie inspires me and gives me a great deal of faith in our younger generation. Thank you Liza, Katie, and Louise for your wonderful visit, and Mattie thoroughly enjoyed the hotwheel cars and the Dunkin Donuts! He shared his donuts with his buddies in the childlife room and there was a lot of happiness in the room today! Below you will see a picture of Mattie with Katie (on the right in green) and Louise (on the left in blue)! Liza the fudge is incredible! I am typing and eating it at the same time.

At lunchtime, Alison came to visit us and brought lunch. Thank you so much for a very tasty lunch and for watching Mattie so that Peter and I had the opportunity to go outside, chat, process the doctors' meeting, and eat. The gift of time to connect is precious to us, and Alison is becoming another good buddy of Mattie's. Thank you Alison for the vanilla shake and the happy meal. I see vanilla shakes are back in style! Who knew.

Today, Peter and I had the opportunity to talk extensively with Anna, Mattie's physical therapist. Anna is a VERY special individaul and she is very motivated to help Mattie regain as much motion as possible. Anna understands Mattie's personality and she realizes she has to work on becoming part of his life, before actually working on tasks with him. Anna spent a great deal of time with Mattie today, and will meet up with us tomorrow too. I feel like Anna will be a very vital part of our treatment team. I am happy Peter took the day off from work. This wasn't his initial intention today, but the morning meeting was intense, and when you get knocked off your feet, it takes a while to restabilize.

I left the hospital today at around 6pm and bumped into Dr. Allison Lax. Allison is Mattie's radiologist. Allison is delightful and we talked about Mattie's MRI and PET scan results. Allison is also expectating a baby, and we talked about how difficult Mattie's situation is to handle as a parent, and she reflects on how she would feel if this was happening to one of her daughters. I also bumped into Stephanie Zimmit too before leaving. Stephanie is a friend of JJ (our resident Jack Russell Terrier). It is scary when you know people on almost every floor of the hospital!

Thank you Jenny for coming by tonight to do a project with Mattie. I am sorry I missed you! Jenny has a smile that just makes you feel better. We all need such an art therapist in our lives! Thank you Rana and Melissa (from Voxiva) for stopping by tonight to visit Peter and Mattie and for bringing dinner! They appreciated your visit. Peter called me too, because I missed a visit from our favorite volunteers tonight, Jerry and Nancy. I missed singing with them. It is the highlight of my week! Jerry gave Mattie his own electric keyboard to keep tonight. I am not sure what you say about someone so generous and caring. Jerry's music brings such joy in our lives, and this additional gift just further illustrates how special he is. Thank you Jerry!

I would like to share two e-mails with you tonight. One is from Tad Ferris (a friend and parent of Mattie's SSSAS buddy, Kazu) and the other is from my colleague, Susan H. Tad said, "Know that you have this when all seems bleak, your extended "family" watch over you every day. Just for you and Pete--I cannot speak except as a father of a boy Mattie's age, a cancer survivor, and based on what I clearly recall of my mother's courage and care for me during my cancer and other illnesses, and even during her own battle with cancer. However, drawing from this, I can say that you are an example for all mothers facing these challenges. I am so glad Mattie has you and Pete at his side. I know in my heart that my own mother, if she was here with us now and sharing our experiences with you, would say how proud she is to know you and Pete."

Susan H. wrote, "Vicki – please use this if it will help Mattie. Although I didn’t have bone cancer, just some heavy-duty knee pain due to an injured, worn-out knee, maybe Mattie can relate to some of this in his own way."

Interesting Stuff About Getting New Bones

(Written by someone ten times older than Mattie, but who can be just as scared and uncertain. Age doesn’t matter when it comes to fear!)

1) I didn’t want a new bone, but I had to get one to make myself healthier.
2) I was afraid to give up my “birth bone” and have surgery, but my “birth bone” had bone bugs.
3) My new bone is healthy and doesn’t hurt.
4) My new bone can’t get bone bugs. It’s “superman” strong.
5) I feel happier and healthier and can do things I couldn’t do when I was hurting so much because of my “birth bone bugs.”
6) Nobody can tell I have a new bone. No one can see it, feel it or hear it.
7) Even I can’t tell I have a new bone. Even though it’s metal and ceramic, it feels very real to me. The only time I know it’s not real is when I go through an airport x-ray machine and the buzzer sounds.
8) The new bone will last a long, long time.
9) I’m not going to be as scared now when I get my next new bone. Even though it hurt right after I got it three months ago, it doesn’t hurt at all any more, and I’m happier. So now I’m getting ready to get my next new bone, and it will be okay too.

On the electronic front, I want to thank Allen and Brian Boru for your e-mails and Karen, Kim, and Lorraine for your great e-cards. I end tonight by saying, OH MY GOODNESS! Have you been following the current hit count on Mattie's blog? In just a matter of days, we are up to over 1000 hits. Thank you all for always checking in and for all the support.

Tuesday, October 14, 2008

Tuesday, October 14, 2008

Each time Mattie undergoes Chemo, we have a little bit of a different experience. Clearly this round of Methotrexate is wiping him out. He could bearly get up this morning. I coaxed him up at 10am, but he was groggy. He was greeted by Judith, the director of religious education, from Holy Trinity church in Georgetown. Judith came to spend time with Mattie and read a book with him. Mattie however, wasn't in the best of moods, and instead decided to burrow himself in my lap. He kept saying he was nauseous too. He seemed to perk up with the idea of moving into the childlife playroom. So Judith, myself, and Denise (Mattie's social worker) traveled the hallway to the playroom. In the playroom, Mattie tried to figure out what he wanted to do. He picked up a few cars and a train from Linda's toy pile and went back to the table to listen to Judith's story. But Mattie was just not into this today. Around this time, Ann walked into the room. Ann brought with her a bag to tricks (well not real tricks, but you know what I mean). It was the cutiest little pumpkin bag, filled will mini science experiments and other halloween things such as a spooky necklace and mask. The experiments caught everyones' attention in the room! For example, I will tell you about the 'Mystical Tree' experiment that Mattie performed today. Mattie got to assemble a cute tree made out of paper. He inserted the paper tree into a plastic stand and then placed "special" water in the bottom of the stand. The water seeped into the paper through osmosis, and reached the top branches of the tree. As the water began to evaporate from the soaked paper, it left behind a beautiful yellow crystal blossom (illustrating the crystallization process). We had our own home grown science class taking place in the childlife playroom. Ann's experiments changed the whole tone of the room, because before these activities, I felt tension in the room, and I wasn't sure which direction Mattie's mood was going to turn. It was nice that Judith had the opportunity to see Mattie more at ease, because so far each time she has seen him, he has not been himself. I have tried to unpack why this is happening with Judith, who is a lovely lady, who has also had cancer touch her own family's life. Of course as a parent I feel embarrassed by Mattie's behavior, especially since Judith is here to help support Mattie. However, Denise commented to me that she has never seen Mattie react this way before to someone, which made me take a step back to further analyze what was happening. Most of Mattie's visitors are folks Mattie knew prior to being sick, and I feel this has a lot to do with how he reacts to Judith now. Judith is very patient and understanding, and we are working on ways for her to get to know Mattie better, so that he is comfortable working with her. Below you will see a picture of the 'Mystical Tree' and a glow in the dark witch that Mattie worked hard to retrieve.

It is moments like today where I realize that Mattie is affected by all of this emotionally. Of course this is understandable, and in many ways it is the emotional and psychological ramifications that are as or more daunting than the physical implications of cancer. As we have survived the past 10 weeks of treatment, I see they do not come without there own battle wounds. One of the direct consequences I see is a level of moodiness or grumpiness in Mattie's behavior. Mind you I feel that all of this is very natural, because who on earth wouldn't feel this way from being pumped up with toxic chemicals, medicines, being poked and proded at all hours of the day and so forth? Though understandable, it is hard to see your child being transformed before your eyes and realize some of this is inevitable and uncontrollable. That doesn't mean I am going to allow Mattie to fall into a pit of despair, but I am simply saying these are my observations, and as we head into surgery, I feel I am going to need to keep a close eye on his feelings and reactions.

Ann played with Mattie for over an hour today, while my mom and I went to get some hot tea. It was around noon, and I still hadn't eaten breakfast. Ann, thank you, I rarely get a moment to have a meaningful conversation with anyone these days. My mom and I enjoyed this special time together sitting outside! While I was gone, Ann and Mattie transformed the childlife playroom to an archeological dig. They unearthed the toy bones of a triceratops and assembled the model. See the picture below. Thanks Susan S. for this great activity! Thanks Ann today for your visit. Sometimes I wonder where I would be without you?!

After about an hour, I did get a call from Ann and she said that Mattie wanted me to come back to his room. I got back into the room, and pretty soon there after he began vomiting. He vomited for an hour, and then literally at 2:30pm fell asleep. Mattie did not awake until 6pm. Mattie was going to have a playdate today with Sam G. from RCC, and then later with Kazu from SSSAS. But neither playdate happened. Part of me wanted to wake Mattie up because who knows if he will sleep at all tonight, but on the other hand, sleeping seems to be the only magical way to fight off the nausea. Mind you he fell asleep on his own without any help of medication. Mattie did wake up and was in a good mood, and literally ate for three people. Three bowls of spaghetti, a bowl of Scooby Doo mac and cheese, a hot dog (thank you Junko!), chips, and apple pie (thanks Karen K.). Wow! I wasn't expecting this based on how Mattie was feeling this afternoon. Karen, thank you for baking us another special pie! It was enjoyed by all.

Tomorrow, Peter and I have a meeting with Mattie's oncologist and surgeon at 8:30am. We have a lot of questions pending about Mattie's surgery and feel it is important to have an understanding about expectations so that we can help Mattie through the next step of his journey. Later this afternoon, we had a visit from Junko and Kazu Ferris. Thank you Junko for dinner tonight. We loved the soup. I never thought of adding lemon juice to chicken soup, but it was delicious. We enjoyed everything, and Mattie ate very well tonight! Mattie also loved all the wonderful Halloween treats you brought (we love the Mattie Halloween t-shirt!). Mattie is going to have a great time decorating his room and celebrating with others on the floor. We want to thank Mrs. Donna Ryan (SSSAS Kindergarten teacher) for the wonderful signed copy of "Tough Boris" by Mem Fox. This will be a book we will cherish. A special thank you also to Ms. Leslie Williams (Mattie's Kindergarten teacher) and Mrs. Donna Ryan for the Steps to Literacy books. We will both get a lot of pleasure out of reading these together. It reminds me of our days at SSSAS, with our weekly homework. How I miss those days! Thank you Ms. D. (SSSAS school counselor) for the great Halloween musical card. You always find the best cards.

I want to share two e-mails I received today. One is from my friend Susan S. and another one is from my colleague, Susan H. Thank you both for such thoughtful e-mails!

Susan S. wrote, "Although our time together last night was short, I really enjoyed seeing you and Mattie. I love watching your patience with him when I know that you have to feel like a ping pong ball bouncing all over the place with shattered nerves. What really impressed me was despite everything you continue to stick to your parental guns. While it seems it would be easier to let Mattie behave however he wants, you continue to keep his behavior on track. That has got to be one of the reasons why he is so well liked by everyone. He's such a well adjusted little kid. You should be proud of both him and yourself."

Susan H. wrote, "I hope you're starting to feel better. I just wanted you to know that I start my day EVERY morning with reading your blog. What a tremendous service you are doing by writing your experiences and emotions. Some of the experiences you have had with the healthcare system are tragic and unnecessary, and I feel sad each time one of those events is written about. But on a brighter note, what a wonderful example of a MOM you are. Mattie couldn't be blessed with anyone better. Do you remember a conversation we had over a year ago when I discussed with you the story I tell patients about the oxygen on an airplane, and that you need to put the mask on yourself first (just like the flight attendant says) before helping anyone else? Please remember to give yourself the "good stuff" so you can continue to give the good stuff to Mattie also. The other airplane analogy that you may remember was when there's turbulence, it just means the angels are so excited to accompany us on our trip that they keep bumping the bottom of the plane, thus the turbulence. So keep breathing, dear friend, and know that there are many people out there cheerleading for you and your family that don't necessarily stay in daily contact. Stay well, Vicki, and know that you are truly making a difference not only in Mattie's life, but in many other lives as well as you educate us about family life when cancer occurs."

On the electronic front, I want to thank Allen, JJ (our special Jack Russell Terrier), and Barbsie for your lovely e-mails, and Kim, Karen, and Emily W. for your great e-cards. Also a special thank you goes out to Caroline Croze (from 1F at SSSAS). We received the tasty cookies you baked for us in the mail. What a wonderful treat. It was so nice of you to think of Mattie!

As we head into wednesday, Linda and I plan on working with Mattie to start explaining monday's surgery and try to answer whatever questions he has. Linda has given me a lot of information to read on pain, and all of the literature indicates the importance of explaining to a child what he will be feeling post-surgery. Sugar coating the pending pain to a child isn't effective. So we will find the right balance hopefully as we prepare Mattie. As I mentioned in last night's blog, the hospital is a buzz about Mattie's surgery. In fact three managers on the floor talked to me today. They plan on assigning us both a PICU and a HEM/ONC nurse next week, because they know how fond I am of the HEM/ONC nurses, and probably could use all the support we can get. I had a lovely conversation today with Dr. Synder. A doctor who really gets how scared we are, and how intimidating this whole process is. A rather refreshing attitude from a medical doctor! Wish us luck tomorrow as we attempt to explain the unexplainable to a six year old child.

Monday, October 13, 2008

Monday, October 13, 2008

Before Mattie got sick, we used to spend our sunday nights getting ready for the upcoming school week. Not anymore! Last night perfectly illustrated how our life has changed. Before Mattie went to bed yesterday, we accomplished several things together. Such as a dressing change (which takes us about an hour to do), flushing of his lines, and also starting the administration of IV fluids. Mattie went to bed at 1am, and it was a feat to get him into bed by that time. Somehow he comes alive and wired as the night progresses.

Mattie and I had a slow morning. We then packed up and came to the hospital. It amazes me that even though we spend more time in the hospital than at home, it boggles my mind that we have to go through a formal registration process each time we come to the hospital. You would think they could streamline the registration process for those of us who are repeat and frequent customers. The person who registered us today was a sight to watch. She had no idea what she was doing, and instead of getting impatient, I just sat back, and watched the chaos unfold. Finally we headed upstairs. My parents helped us move in, which is a major event, of carting boxes and bags! As Mattie entered the floor he was immediately greeted by doctors and nurses. It is like being on the TV series, Cheers! Where everybody knows your name!

As we settled into Mattie's room, Mattie was greeted by Lesley and Whitney, and then Linda. Mattie was motivated to get to the childlife playroom. But the hospital had some sort of film crew and actors in the childlife playroom and the family room, filming the rooms and what was available in there. You have to wonder what the hospital administration was thinking? Why tie up the playroom for so long on a week day, when the children should have access to the room? Why not use the room on the weekend, when the room is off limits to patients? Later in the afternoon, I went into the family room to use the microwave. It was there that I ran into the film crew, who was trying to film a woman doing laundry. I don't know about you, but I don't select a hospital based on its laundry facilities! Maybe I am missing something regarding this promotional video of the hospital! I was just watching this unfolding in amazement, and I wanted to stop the photo shoot and say, "are you kidding me?!"

When I tracked Mattie down later in the afternoon, I found him in the childlife playroom with Linda. Linda received 700 new toys today, which were literally piled floor to ceiling in the room. Mattie decided to sit on the floor and help Linda sort the toys. See the photo of this below. Mattie was ALL business. Of course, you know Mattie couldn't come out of this sorting process without a gift for himself. He came back loaded with all sorts of things.

As of 9pm, Mattie started the infusion of Methotrexate. It took him about 5 hours today for his urine level to become more basic, above a PH of 7. So we shall see what the night holds for us. But one thing is for sure, the buzz around here is that Mattie is having surgery on monday. Linda and I talked about ways to prepare Mattie for surgery on monday. We even discussed setting up a mock surgery, which Mattie can perform on a doll. I had a nice conversation with Dr. Shad today as well. Dr. Shad is the director of the pediatric oncology program. I told her what some of my concerns were, such as pain management, and not knowing what to expect during the recovery process. I explained to her that if I don't know what to expect, I can't possibly help Mattie. She understood what I was saying, and is working on getting me answers, as well as sending up the pain management team at GT to talk with us. I want to thank all my e-mail osteosarcoma survivor buddies for clueing me into the questions about pain management. As next week draws closer, I wonder how on earth you explain to a six year old what is about to happen to him? I can't even grasp this myself. There is something so permanent about surgery. It leaves scars which further serves as a constant reminder that cancer is ever present in our family's life.

We had a lovely visit from Susan S. tonight. Thank you Susan for the wonderful dinner. Mattie ate almost all the pasta you brought. He is very much looking forward to doing the triceratops dig tomorrow. You know how much he loves this! Thanks for the puzzle, halloween book, as well as the book for me.

On the electronic front, thank you Kim, Susan, Karen, and Brian Boru for the wonderful e-cards, and Coach Dave for the lovely supportive e-mail. Special thanks Brian Boru (by the way, Brian is a CAT) for the great gifts (stickers, hidden pictures book, dinosaur coloring book, and flexible puzzle). We also want to thank Rev. Rosemary at SSSAS for your lovely note and for letting us know that St. Paul's is saying prayers for Mattie. Next week will be a very challenging and stressful week for all of us. Please continue to keep us in your thoughts and prayers.

Sunday, October 12, 2008

Sunday, October 12, 2008

Quote of the day: From Maria (my new friend and a parent of an osteosarcoma survivor):

"When you are fighting an enemy as powerful as Osteosarcoma, you just can't take a break!"

Mattie woke up today in a good mood, because he knew he was going to see his Boston family before they returned home today. While Mattie was up and about, I basically couldn't move from bed. I developed a fever, swollen eyes, and a terrible cough. I figured I would stay in bed and rest today, but then reality set in, I knew I needed antibiotics, otherwise, there would be no way I could continue to be around Mattie and help him in the hospital starting on monday. So I decided to call up my family internist. Just to find out that she no longer offers an after hour call service. So basically I guess she only wants me to get sick on monday through friday from 9am to 5pm! I felt helpless, because I knew I wasn't up to a five hour ER visit. So guess who I called? If you guessed Ann, our Team Mattie Coordinator, then you guessed correctly! I called Ann and left her a desperate message. Within 15 minutes she had Dr. Bob (her husband) call me back. I described my symptoms to Bob (Mattie's surgeon), and he called in a prescription of antibiotics for me. Thank you Bob! I am not sure where our family would be without Ann and Bob. I am glad I don't have to wonder.

Mattie had a great time this morning with his Grandma and his cousins. They were outside playing and enjoying each others company. As they were leaving, my mother-in-law and sister-in-law came up to say good-bye to me, but I did not hear them come in, but I was awake when my nephew, Nat, came in. He came in very quietly and said good-bye and then held my hand. It was very sweet and very darling. Mattie enjoyed visiting with family this weekend!

For the rest of the day, both Peter and I were feeling tired and under the weather. Thankfully my parents were here, and they took Mattie to their apartment for the entire day. They played every game possible, and even hung out in Mattie's clubhouse that he made out of cardboard boxes! We all had dinner together tonight, and now we are ramping up for the hospital tomorrow. Thank you Mommy and Daddy, we would have been up a creek without you today!

Thank you Susie for the wonderful soups and pasta! It was so nice of you to think of us, and Mattie loves his halloween cat! I want to thank Katie May for planning a visit to the hospital this week with other SSSAS seniors to play with Mattie. I am sure he will enjoy meeting all of you. I am so impressed with these seniors, and I can't get over their compassion and dedication to Mattie.

On the electronic front, I want to thank Nancy (A parent of an osteosarcoma survivor, who was a patient of Dr. Henshaw’s. Thank you for your special prayer for Mattie), Carey C. (my new osteosarcoma e-mail pal), Brian Boru, Barbsie, and Brandon (Mattie’s big buddy at Georgetown Hospital) for the wonderful e-mails and Emily W, Kim, and Karen for your great e-cards. I end tonight with an incredible thank you to all our readers. Yesterday afternoon Peter added a counter to the blog. This would give us some idea how many hits we receive to the blog. Within one day, Mattie's blog received over 300 hits. Totally amazing! Whenever I feel alone, I reflect on all of you who are with us on this journey.