Saturday, August 30, 2008

Saturday, August 30, 2008 - Today was a good day for Mattie. Last night was largely uneventful as Mattie's nausea and vomiting did not return. Other than urinating every 2-3 hours, coordinating the capture of urine every 4 hours, Zofran doses every 8 hours, Leucovoran doses every 6 hours, and blood draws regularly, we had an uneventful evening (funny right, after hearing everything we needed to manage). The Methotrexate is exiting Mattie's body but not quite with the regular speed that it should. Last night around 1:30am (I think it was), The Team made three adjustments: they increased Mattie's hydration rate to 165 mL/hr., reduced the interval between Leucovoran doses to once every 3 hours, and added Sodium Bicarbonate to his fluids. This was done since Mattie's Methotrexate level after 24 hours was 7.2 (it should have been lower), the Creatinine level in his urine had risen to 0.5, and the pH of his urine had dropped to 6.0 (slightly acidic, when it should be on the alkaline side). There was no noticeable impact on Mattie for these adjustments, but Peter spent the better part of two hours at 2am this morning understanding and learning about these adjustments.

So Mattie's energy level came bouncing back this morning, which on the one hand is great and on the other hand is tough. It is wonderful to see Mattie acting a little more like his old self, but on the other hand, Vicki and I are left to entertain him all by ourselves, which of course we wouldn't mind if we were not wiped out ourselves. Peter has two analogies that he uses in describing Mattie when he is in this state: 1) it's like watching a lion in the zoo that just paces back and forth, and 2) like an armed torpedo searching for a target by pinging everything. One of Mattie's first projects for the morning was designing a mosaic tissue box holder. We had a good time doing this, and the end product is quite lovely. Thanks Linda for this great weekend idea! You can see Mattie busy at work in these pictures, with a beautiful smile on his face.

Fortunately, we had some visitors today to offset and absorb Mattie's voracious appetite for engaging activities. Mattie's Aunt Lisa, Uncle Chris, and cousins (Nat, Sydney, and Will) from Boston came to visit us at the hospital. They spent several hours with us, brought us lunch, and some gifts (a special thank you to Lisa's friend, Leslie, who gave Mattie a wonderful matching game that will keep all of us busy). Mattie's cousins were just the right medicine for all of us today. Mattie woke up this morning and seemed in a bit of funk, wondering what he was going to do today, especially since his buddy, Linda wasn't here. Then I told Mattie that his cousins were coming to visit, he practically did a dance in his bed with excitement. Nat, Sydney, and Will were all great with Mattie. They played with him, and treated him no differently than they normally would. Again, it is in moments like these in which all seems almost normal once again. Nat, Sydney, and Will are very special kids (and this is not just a biased Aunt talking). Nat told Mattie that he, Sydney, and Will would travel whatever distance today to see Mattie. I thought this was a very sensitive and genuine statement.

Below you will find some pictures of our family day together.

This is a picture of Peter, Mattie, Aunt Lisa, Will, Sydney, and Nat in the hallway of Mattie's unit. For those of you who don't believe that the walls of the unit are VERY blue, notice the picture! It gives a whole new meaning to blue.

I like to entitle this picture... "Georgetown nurses hard at work!" Today Mattie had a picnic outside the hospital with his cousins. We felt it was important for Mattie to get some fresh air and Dr. Synder (our attending physician) and Mattie's nurses all agreed. However, during the picnic Mattie was due to receive Zofran (an anti-emetic). Instead of Mattie having to come back inside, Miki (another one of Mattie's wonderful nurses), came all the way out of the hospital to find us. You can see Miki above bending down to administer Mattie his medicine. Though this sent her out of her way geographically, she did not want Mattie to stop having fun outside. So she willingly and happily accommodated Mattie. Miki is the another fine example of the outstanding nursing care we are receiving. Thanks Miki!

Nat, Mattie, Sydney, and Will in a rose garden near the hospital!

Vicki and Aunt Lisa

Vicki, stopping to smell the roses. Denise, thank you for telling me about the garden! What a nice find.

Uncle Chris pushing Mattie's IV, with Nat and Sydney, and Will in toe. By the way, Mattie can move quite quickly even though he is hooked up to an IV. When you are pushing his IV it is almost hard to keep up with him. I wouldn't want to IV race with him!

Mattie and Will inside a fort they built on Mattie's hospital bed!

Later on today, our family friend, Lorraine, came to visit and brought us a lovely dinner. Mattie loved the pasta, and we loved the wraps, pasta, and watermelon. Thanks for the shakes too and as always your wonderful company. It meant a lot to us! Below you will see a picture of Mattie and Lorraine working on a wooden model of a bulldozer. Mattie assembled it and then painted it later on in the evening. Thanks Lorraine for the dinosaur drawing book too.

On Mattie's electronic front, we want to thank Kim (RCC's director) for her wonderful e-card. Kim sends a card to Mattie each day, and he looks forward to seeing it each time. We continue to be amazed with how Kim seems to find just the right card to perk up our day! Thanks Kim for always thinking of Mattie. Mattie also received a very touching message from Coach Dave (SSSAS' football coach). The Coach updated Mattie about their recent game and he also let Mattie know that he is drinking vanilla shakes now in Mattie's honor. It was a very meaningful e-mail, and I think Mattie likes the fact that he can say he is the youngest member of the Saints Varsity Football Team! Thank you Charlotte for your e-mail, I love hearing what you are up to. Mattie also received an e-mail today from JJ (yes JJ the Jack Russell Terrier). JJ tells us that he misses Mattie and wants him to come home! We are definitely working on this JJ!

I want to thank all of you for e-mailing us as well. Your support and friendship means a great deal to us. Thanks Ann for checking in with us today by e-mail and phone. I also want to thank Denise, our social worker. We told her that we were unhappy with the level of cleanliness in Mattie's unit. Denise knew exactly who to contact to resolve this issue, because today Peter and I witnessed a cleaning of the unit (about 8 hours in duration) like we hadn't seen before. Lastly, we want to thank Chris and Lisa for watching Mattie today for two hours while Peter and I got to walk around outside and get some fresh air. Peter walked me through the Georgetown campus and we reminisced about his days in the McDonough MBA program. I commented to Peter that I never knew our lives would bring us back to Georgetown's campus, not for a paid education (though we are certainly getting an unsolicited education), but for some thing even more important, a means to save Mattie's life. Good night and God Bless all of you and our Mattie.

Friday, August 29, 2008

Friday, August 29, 2008
It was a rough Thursday night into Friday. Fortunately Erin, Mattie's nurse, was on last night. She is a delightful, very patient, and competent nurse. She helped us through the entire process. Before I continue, let me tell you a little bit about Methotrexate, from a parent's perspective. For those of you not familiar with the chemo process, I want you to know that when a nurse starts the administration of the chemo (i.e. the infusion), she must protect herself by wearing VERY thick rubber type gloves. Why? Because the chemo drugs are toxic to the skin. When it is excreted in the urine it will burn your skin. With that in mind, now picture this stuff then coursing through your child's body. If it can burn the skin, you get the picture of what it does internally. Methotrexate has a memorable color as well. I call it highlighter yellow. The stuff literally looks like it is glowing, and as it dripped through Mattie's IV and down into his body, I couldn't help but wonder how on earth his body was going to react to this stuff.

Needless to say after ninety minutes from the start of methotrexate administration Mattie became very nauseous and started vomiting (can you guess the color of the vomit? You got it highlighter yellow/orange.). The vomiting just continued and Mattie started to look thoroughly worn out. So as the night progressed, Mattie was on Zofran, Ativan, and Benedryl for nausea. This combination seemed to do the trick as Mattie continued to be pumped up with fluids post-infusion to start eliminating Methotrexate from his body. So picture a child who is worn out from vomiting, dizzy and a little incoherent from the sedatives he was on, and having to jump out of bed every two hours throughout the night to go to the bathroom. Sometimes Mattie made it to the bathroom, and sometimes not. So Peter and I, in our stupor, (with Erin's help) were changing Mattie, changing the beds, and trying to collect urine every four hours to be tested. Made for a fun night.

I am now experiencing a level of tiredness that I have never had before. I have certainly had my share of sleepless nights before, like any parent caring for a newborn and not to mention years of being a student, having to study, pull all nighters, and balance clinical work with other things. But this type of tired is like no other. The scary part about all of this, is we know this tired feeling will not be going away anytime soon. The war and marathon are just beginning, and like any good athlete or soldier, we will need to figure out our long term strategy in order to be able to remain competitive. Unlike regular sporting games, our stakes are much higher, and as I have read in the psychological literature, there seems to be a positive correlation between a child's cancer survival rate and a parent's level of participation and involvement in the treatment process.

Toward mid-afternoon, Mattie started to perk up. We had a visit today from Dr. Toretsky. For those of you who would like to get to know a little bit about Dr. Toretsky from a more personal angle, I have attached his You Tube link. He and his son went on a musical retreat, and when you click on the link, you will see Dr. Toretsky playing both the clarinet and sax (not at the same time, but wouldn't that be funny if he could do that!). In addition, the young fellow playing the trombone in the video is Dr. Toretsky's son. Dr. Toretsky shared this summer vacation video with us, and I figure how many oncologists you know can play two instruments, have his/her own band, and also be on You Tube? Enjoy the link:
http://www.youtube.com/watch?v=wDY_4kEhWcY

We had a visit today from Ann and Alison. Linda was kind enough to play and watch Mattie for two hours today, so Peter and I could have a break. Ann and Alison brought us lots of treats. Ann, the vanilla frosted donut you brought Mattie is officially gone and of course the D&D coffee was a real treat for Pete! Last night Alison sent me an e-mail to ask what we wanted her to bring today for lunch. Poor Alison is becoming a standing customer at Rio Grande. Normally, I do not eat a lot of Mexican food, but I have major stress cravings for certain things, and Alison is kind enough to meet my demands. In addition, as I signed off in my e-mail last night to Alison I told her in jest to bring a nail file and a big shovel, so that I could successfully plan my escape from my own private Alcatraz. So don't you know it, before Alison left this afternoon, guess what she took out and gave me? That's right a nail file. I am still laughing over this because she got my joke and is playing along with me! Thank you Alison for all the thoughtful things you brought Mattie, Peter, and I. It is funny how life brings some people together, and Peter and I consider ourselves fortunate to have met Alison. Thank you Ann and Alison for helping us brainstorm fundraising ideas, and for helping us focus on what we are trying to accomplish. Our ultimate goal is to help Mattie, and so our initial fundraising efforts this year will be focused on generating funds for Mattie's care. So stay tuned for more information. I do want to comment though that a friend of Alison's, who we have never met, is doing a lot of research on our behalf to help figure out how to manage the funds we collect on Mattie's behalf. We continue to be amazed by the generosity and selflessness of those around us.

Speaking of selflessness, yesterday I received an e-mail from a nurse by the name of Christine. I never met Christine, but she learned about Mattie from a mutual preschool friend. Christine sent a lovely e-mail offering her services to help us at home with Mattie's care. She wants to be supportive of us and understands the stresses we are under. How do you adequately express thanks and true gratitude to someone you haven't even met before?!

Later on this afternoon, Mattie had a visit from Susan DeLaurentis. Susan is Mattie's school counselor at SSSAS. She delivered a beautiful bouquet of fruit. We have been enjoying it ever since. Thank you Susan! Susan also gave Mattie some fun treats, such as a National's jersey, some invisible ink books, and this cute book on how to make thumb animals. Mattie spent the afternoon working on dog and cat thumb prints. Susan is working hard with Bob Weiman, to figure out how to keep Mattie involved at school, but also how to normalize and explain what is happening to Mattie to his classmates. On an aside, each week, Susan sends Mattie a musical card in the mail. I told her Mattie loves them, and each card is so great, and instantaneously brings a smile to his face.

This evening, Elizabeth Murphy came to visit us. Elizabeth's son, Declan, is on Mattie's soccer team. Even though we just met Elizabeth in the spring, she is kind enough to bring us dinner and support us through this journey. All I can say is that through Mattie, Peter and I have met many remarkable people. Where would we be without Mattie? Our lives would be so empty on so many levels.

On the electronic front, Mattie received several lovely e-mails today from Grammie, Charlotte, Abigail, and Ms. Pollak. Thanks Grammie for the story about the bears and thank you Abigail for sharing your fishing picture with Mattie. Mattie happens to love to fish with his dad on the Potomac. A special thank you goes out to Kim and Karen for the e-cards. Mattie looks forward to seeing each and every card.

So here is to a better night for Mattie, a good Labor Day weekend to all of you, and know that Peter and I are deeply touched by each and every one of you.

Thursday, August 28, 2008

Thursday, August 28, 2008

This morning we checked into the Lombardi Clinic at around 10:30am. At which point Mattie went through his usual routine. He got his vitals checked (blood pressure, temperature, weight and height check) and then got hooked up to an IV sodium bicarbonate drip for the next several hours in preparation for the administration of Methotrexate tonight (the third chemo drug that he is receiving in this treatment regimen). Literally we were in the clinic from 10:30am until 3:30pm, so the question you are probably asking yourself is how in the world did we keep an active six year old entertained for five hours while in the clinic?! Well I can answer that in two words... Jenny and Jessie. They are fabulous art therapists and they know how to energize Mattie. Mattie was so engaged in crafts and activities that he did not even stop for lunch! We took three pictures today in the clinic. Two of the pictures show Mattie's Scooby Doo ceiling tile that he painted. The tile is dry and now up in the clinic for others to enjoy. The third picture shows Mattie hard at work at an art project. Mattie has been able to learn to work with clay and he has created some wonderful models of things (below you will see his version of a drive in movie theatre) that have been fired in a kiln, and today he got to glaze his works. Peter is enjoying this process as well, since this is an art form that he always excelled at. Needless to say all the art projects are therapeutic for the whole family.

Dr. Toretsky was on vacation last week. He went on a musical retreat to Canada with his son. Based on what I have experienced over the past couple of weeks with Mattie, I can completely understand the need to retreat and escape away from the reality of the oncology world. Seems to me, one needs to do this to keep one's mental sanity. In any case, we caught up with Dr. Toretsky today and told him about Mattie's episode of neutropenia over the weekend. But in all reality, we are all thrilled with how well Mattie is handling this. Mattie is a trooper, and his strong willed personality may actually turn out to be a real positive in this situation! Dr. Toretsky discussed what kinds of things to expect with Methotrexate and spent a significant amount of time answering our questions.

At around 3:30pm, we headed up to the PICU. We were greeted by Dr. Jung, one of the wonderful pediatric residents, as well as Tricia and Kathleen (Mattie's nurses). Seconds later, Linda was on the scene and Mattie was very excited to see his buddy. Linda rearranged our room for us and helped us ease back into being inpatient. Mattie was in good spirits and entertained all the ladies with his trick spider and some of his creations from the clinic today. Everyone was laughing with him, and they could all see that he was a live wire today. Again, the beauty of being six! To be able to live and appreciate the moment is a wonderful gift Mattie is teaching me. Somehow we lose this ability as adults. We are too wrapped up in what is coming next or better yet how to prepare for what is coming next. With all this worrying it is hard to enjoy the moment, or even sometimes observe what is happening in the moment.

I had the opportunity to talk with both of our social workers today, Denise and Mary. I found both conversations very helpful, and I feel they understand the pressures Peter and I are up against. In addition to these conversations, Dr. Toretsky introduced me to Maria. Maria is the mom of Teresa. Teresa is 7 and is an osteosarcoma survivor. Teresa came to play with Mattie in his room, while Maria and I got a chance to talk and share our stories. Teresa gave me a lot to think about, but I found her very supportive and sensitive to just how unique Mattie's case is. On many levels is it hard to be so unique (to have bone cancer at such a young age and in four different locations). I always knew Mattie was special, but really, must he be this special?! I am not sure what God's plan is for Mattie or for us, but I just hope he gives us the strength and energy to see it through.

This evening, Mike Doane (a RCC Dad) came to visit us and brought us a special treat. Crab cakes from Clyde's. What a lovely and tasty surprise. Who could ever turn down a Clyde's crab cake. Needless to say they are all gone, and Mattie loved his Ben and Jerry's Vanilla Shake. I want to thank the Doane family for all their generosity with dinner, gifts, and support. In addition, Mattie received several lovely e-mails today. Thanks Kim and Elizabeth for the great e-cards, and Charlotte for the wonderful picture of you and your kite on the beach. There is something very freeing to see this picture of a kite floating and flying in the breeze. It brought a smile to all our faces. For those of you who do not know, Mattie is very fond of Charlotte. Charlotte was his first kindergarten buddy and for many months Mattie would report to me that Charlotte was his girlfriend and he was going to marry her. In fact, when he won a ring at the dentist's office for a good cleaning, he proudly gave it to Charlotte!

Mattie is blessed to have such devoted e-mail pen pals too. Thank you Allen, Kazu, Charlotte, and Ms. Pollak (Mattie's SSSAS Art Teacher, and a good soul who is devoted to keeping Mattie stimulated and engaged. Debbie is planning a wonderful and meaningful activity for Mattie next week... the design of a prayer feather) for your daily e-mails. Mattie also received a lovely e-mail and great pictures from his cousin Nat today too!

As for this evening, Mattie began Methotrexate at 8:15pm. Methotrexate is a powerful drug that disrupts the pathway of how cancer cells feed themselves, specifically by removing hydrogen from the enzyme that allows them to feed and grow. Methotrexate will be infused over a four hour period. Then 24 hours later, Mattie will be given Leucovorin, which is the rescue drug that replaces the missing hydrogens for the regular cells. We will then monitor Mattie's urine every 4 hours and perform blood tests at 24, 42, 48, 72 and 96 hours post-administration to ensure his kidneys are not failing, that his liver is not being damaged, and that the Methotrexate is being eliminated from his body. Mattie vomited approximately 90 minutes after the drug administration, so it looks like we're in for another nausea/vomit ordeal over the next few days. The Zofran given 30 minutes in advance apparently did not help so Mattie is now on Ativan, which makes him act tipsy and spacey, but hopefully this will cut down on the nausea and vomiting.

Tomorrow, Peter and I will meet with Ann, Alison, and Carrie to discuss fundraising ideas. We are also researching the best legal entity to create for Mattie (i.e. a foundation, 501(C)3, etc.) so that we have the proper vehicle in place to benefit Mattie and/or research for osteosarcoma (thanks to Adam K. and Alison for your help in this effort). I know there are many people around the country who want to contribute to a Mattie fund, so we plan to get something in place quickly. As I close tonight, I just wanted to reflect on the fact that Peter spoke with his buddy John today, a cancer survivor, and I spoke with my friend today, Beth, who is also a cancer survivor. When Peter and I reflect on our friends who have survived some of the worst odds, it gives us hope and deep respect for the power of hope, love, and faith. I thank all of you for your unending support and friendship.

Wednesday, August 27, 2008

Wednesday, August 27, 2008

Mattie woke up at around 7am today. He walked into our room and tapped on my arm and then jumped into bed right next to me. I think he got the feeling that I wasn't getting up, so he figured... if you can't beat em, join em. Mattie and I literally went back to sleep and did not get up until 9am. A world's record for Mattie, since he is like Peter, they are both early risers. Meanwhile, Pete was up at 7am.

Mattie was excited to be having a playdate today with his buddy Abigail. Ann (Abigail's mom) and Abigail came over at 10:30am. Abigail and Mattie did all sorts of fun things together, from running with JJ, to setting up trains and tracks, and watching Scooby Doo. The kids were adorable watching Scooby Doo together, and I saw Mattie eat more munchkins from Dunkin Donuts today than he has in a lifetime. It was wonderful to see him eating and laughing. I also heard later on in the day from JJ's owner, JP, that JJ enjoyed meeting Abigail! Thanks Ann for the coffee, donuts, and of course brainstorming September's calendar with us and ways to keep Mattie engaged at School. Also, a big thank you to the Petersons for their gift bag for Mattie. He thoroughly enjoyed it so Thank you!

Mattie received several wonderful e-mails today. Coach Dave (the head coach of SSSAS's football team) gave Mattie an update about the latest game and Mattie feels proud to be an unofficial member of the team. Mattie loves e-cards, and he received one from Kim (Mattie's preschool director). The card literally had a talking dog on it, and we laughed because it reminded us of JJ, well that is if JJ could talk to us. In addition, Mattie got a lovely e-card from Lorraine, our close family friend. In addition, Mattie has developed several e-mail pen pals. Thank you Charlotte, Allen, and Kazu for writing to Mattie daily! Allen is a cousin of Mattie's who lives in Plattsburg, NY. Mattie has never met Allen, but Allen keeps track of Mattie and they talk about all sorts of things. Thanks Allen! We also received several prayer cards today from family and friends, and we so appreciate all the masses and prayers being offered in Mattie's honor!

Tonight we had a visitor, Rana. Rana works with Peter at Voxiva. Rana has offered to prepare us dinner every Wednesday evening. It is a very generous offer! She delivered us a delicious and nutritious dinner and her Caribbean chicken reminded me of our trips to the islands. Isn't it funny how food can trigger certain memories for you! Rana also delivered a package to us that was sent to our family by Capital Health, a Canadian client of Peter's. I have heard a lot about the Capital Health (ARTSSN Team) from Peter over the years. Peter really enjoys the connections he has made with his Canadian friends, and it means a great deal to us, that they would think about our family during this difficult time. They sent us Oiler's (for those non-northern climate folks... it's hockey) jerseys and matching caps. We need to take a family picture of this to capture this moment. Thank you Jim for the package and for also sending us the chocolate. This is definitely the direct way to capture my heart! In addition to enjoying the care package, Mattie also loved the box the gift was sent in. You can see below how Mattie transformed the box into a robot.

It was another good day for Mattie. It is very hard to accept the fact that he feels energetic today but that by tomorrow he definitely will be dealing with the side effects of chemo all over again. Of course we know he needs the chemo, but it is still hard as a parent to cart your child off to the hospital and expose him to such powerful medicines that in the short term only (hopefully) make him so ill. When we are home the first question each day from Mattie is... is today a hospital day?! It is amazing how Mattie accepts this process, a process that I myself am still having issues with.

Thank you for reading the blog, for staying connected to our family, for your thoughts and prayers, and for finding the energy and compassion in your hearts to help us each day in this painful journey.

Tuesday, August 26, 2008

Tuesday, August 26, 2008
For most people, Tuesdays are the second day in any given work week, or at least that is how it used to be for us...... Now, in our "new" life, our Tuesdays take on a new definition. Tuesdays are shower and dressing changing days. This is a process that seems to take us a good two hours to complete. I now view dressing changes as another task to get done, and I am no longer freaked out about the notion that I am caring for a tube that is literally coming out of Mattie's chest, and leads directly into his heart (literally). Despite my comfort level with the process, Mattie is still very scared of the pain from removing this very sticky bandage provides, and there is a lot of crying that is associated with this dressing change. Needless to say after this two hour process, I always feel like I need to lie down from the sheer emotional drain of watching Mattie so scared and in pain.

At around noon time, Mattie's buddy, Alex and his mom (Julie) came over for a visit. Mattie's energy came back in full force yesterday, so having Alex over today, helped to get Mattie's "jumpies" out and to expend some energy in a positive way. Alex was very thoughtful and sensitive to Mattie and the boys did all sorts of things together from building with Knex, acting as knights, running after JJ (our resident Jack Russell Terrier), and jumping on our bed. You can see some of these pictures below. It is times like this, when I see Mattie full of life and energy, that we think nothing is wrong with him. Thank you Julie for lunch, the cookies, all the gifts, and the good company!

This afternoon I was playing with Mattie, and he said to me that he wanted to be "reborn" from my tummy. I made a joke of it at first, and asked him how I could possibly carry in my tummy a 45 pound baby?! We laughed, but then he said if he was "reborn" then he wouldn't have these "bone bugs" in his arms and legs. I understood what he was saying, and only if it were that easy to remove the pain and the "bone bugs," I would go through labor and delivery all over again (which those of you who know about my labor and delivery experience, understand that this isn't an experience that I would be signing up for anytime soon). I find along the way that Mattie comes up with some profound statements and questions. Some which are hard to answer at times. I think parents hope that they can answer their childrens' questions, and thereby enable them to make sense out of the things happening around them so that they can develop a sense of safety and trust in the world and in others. This however, is not an easy thing to be able to do as a parent when your child has cancer.


It is wonderful to see Mattie energized and happy. However, I guess the beauty of being six is that you can bounce in and out of painful times. Whereas, Peter and I are basically in it each moment of the day, and while Mattie's body repairs itself and re-energizes after two weeks post chemo (the beauty of a young body!), Peter and I get more tired, and I felt like I was bearly functioning today. So when the going gets tough, sometimes the tough have to take to bed, which is where I went this afternoon.

We got two very nice phone calls today. One was from Mattie's head of school, Joan Holden. Joan checks in with us periodically and reminds and reassures us that SSSAS stands behind us. It is lovely how a community of which we have only been a part of for a year, has embraced us in this difficult time. The second call today, came from Peter's boss, Justin. Peter has been on leave from work for almost a month now. Most companies would be putting pressure on their employees by now, but I can clearly see Voxiva is a different and special work environment. Justin basically told Peter that Voxiva stands behind us, and they understand that our priority now is and must be Mattie. Justin told Peter that if he needs more time off, then take it. That his job isn't and won't be in jeopardy. I am simply touched by Voxiva, by Justin's sensitivity and compassion, and for allowing us to be a family unit for as long as possible. For this, I am forever grateful.

I received an e-mail today from Ann and Alison. Ann let me know about some fundraising ideas Team Mattie has generated. The first one, I believe is scheduled for September 20, and it is a Car Washing Fundraiser (being coordinated by Johnny P. - the pitcher on the Timeout baseball team that Peter plays on). Thank you Johnny and Team Mattie for this wonderful idea. The second idea was generated by Kristin, a friend and mom at RCC. She is creating a drive in movie night for Mattie and his friends in the fall. This is such a lovely idea, since going to a public movie theatre is not something Mattie can do while on chemotherapy. Thank you Kristin for this special fundraising idea! I also want to acknowledge Alison for helping me think through the Osteosarcoma walk idea and her willingness to meet this week to further work out what I am trying to accomplish before proceeding forward with Carrie.



I leave you with a picture of sheer joy tonight, as Mattie eats his requested pasta. Sometimes a picture does say 1000 words! Thank you for all your love, care, and support and for sharing this good day with us.

Monday, August 25, 2008

Monday, August 25, 2008

We started our morning with a breakfast delivery from Ellen. It was such a nice surprise to see her and to have coffee, tea, bagels, muffins, and fruit delivered. Peter really can't start his day unless he has coffee, so this act of kindness was greatly appreciated! Thanks Ellen!

At around 9:30am in Mattie's hospital room, the two residents who we have gotten to know well, Dr. Kristen Cantor and Dr. Christina Jung walked in. They normally don't come in together, so I suspected something was up seeing them paired together this morning. They said their good morning greetings, and then they couldn't contain themselves. They immediately told us the good news that Mattie's neutrophil count jumped up significantly from 50 yesterday to 560 today. They said we could pack up and we were being discharged. Peter and I were thrilled! But I could also see that Drs. Cantor and Jung were also moved by Mattie's progress. They were not just going through the motions of being happy, but were genuinely happy that Mattie was doing better, and that they could parole us at least until thursday. From my observation, the residents and the nurses work extremely long hours, and with these longs hours I have had the chance to get to know them as individuals. Dr. Cantor said good-bye to us today because she is rotating to the pediatric transplant unit, and I felt as if I was losing a friend in the process. In a way, she has evolved with us through the last several weeks of Mattie's treatment. I remember during the first week of Mattie's treatment, when I was walking the halls of the unit looking shell shocked, Dr. Cantor took the time to come over to me and ask me how I was doing. I must admit I have never had a medical doctor before take an interest in knowing how I was really doing. But I am seeing these oncology folks are different from their other medical counterparts. In any case, when Dr. Cantor asked how I was doing, I basically lost it. But instead of running the other way, she listened, was visibly moved, and gave me a hug. From that moment on, I could see she was not only a competent doctor (as I saw her interact with Mattie each day), but a deeply feeling person, who was on this journey with me. I will miss Dr. Cantor this week, and I have no idea if she will read this blog, but I wanted her to know she made a difference in how I experienced the first two weeks of Mattie's treatment.

It is also interesting to see the nurses interacting with Mattie. Each one works very hard in trying to get to know him, his likes and dislikes, and his personality. They all have his number, and they always ask him about his art work, or what game he played today. For those of you who have visited me, you know that Mattie's rooms are like two by fours. They are narrow, dark, drabe, and I could go on. But despite the lack of decor (and don't get me started with the fish/aquarium theme going on in the hallway) and the rooms being way too small for a family, all of this can be overlooked because we have an amazing group of nurses standing behind us. I don't say this lightly either because my physical environment usually deeply impacts how I am doing and feeling.

So after hearing the news from the doctors, we started packing things up. At that point, Linda came into the room, and Mattie was a happy camper. Linda had promised Mattie the opportunity to get his own hospital ID. So Mattie told Linda he wanted to get an ID before he left today. So while we were packing, Linda took Mattie on an adventure. When they got back, Mattie literally had a hospital ID badge. It looks like an official hospital ID badge and it says "Mattie Brown, Pediatrics" and it has his picture on it. Mattie loves his ID, and has shown it to everyone. He even wore it to bed tonight. Thanks Linda! Mattie felt very special today. Peter and I were thrilled to leave the hospital today, but Mattie was dragging his feet. I asked if he was happy to be going home, and his response was.... "you mean I don't get to play with Linda?" I told him Linda would see him on thursday. He seemed okay with that answer.

We got home, and had to unpack, clean up after the cat, and I did some laundry. Some how keeping busy makes me feel better, especially after being couped up in a hospital room. We had several visits from JP and JJ (our resident Jack Russell Terrier). You can't help but feel energized after being with JJ! Then I pulled up Mattie's e-mail for him. He received a wonderful photo and e-mail from his buddy Kazu today. Mattie loved the fact that Kazu was wearing a Red Sox t-shirt in the picture. Mattie also received his first video clip e-mail from his good buddy, Charlotte. Charlotte sent three videos, one more hysterical than the other. In one video, Charlotte is making silly faces into the camera, and Mattie just couldn't stop laughing. Mattie is not a phone person normally, but he decided he wanted to talk to Charlotte after seeing the video. So those two had a cute conversation together, and Mattie was walking all over our home while chatting with Charlotte giving her a play by play of what was happening in each room. Thank you Charlotte for the great bathrobe too! We just opened it up today. It will be coming with us to the hospital on thursday.

We also received a wonderful e-mail from John Bonds. John is a good friend, amazing person, and also a cancer survivor. This past weekend, John participated in a Livingstrong Race. John sent us some wonderful pictures today, and on the back on his cycling racing shirt, it said that he was dedicating his race to Mattie Brown. It was very moving to see this. John fought this battle and won, and I find it deeply meaningful that he wants to pass his courage and strength along to Mattie. I will find a way to download that photo so that I can post it to the blog.

At the end of the day, we had a visitor, Kathie Stoltzfus. Kathie was Mattie's occupational therapist for over two years. I have gotten to know Kathie very well over the years, and she and Mattie have a wonderful rapport. Kathie has been through the highs and lows with Mattie, and I always tell her that the reason why Mattie can do all the great physical things he can do today, is in a large part due to her skills and patience. Kathie brought us dinner tonight. I am not sure how she knew this but I am a major olive fan. So pasta with olives and olive bread went over very well tonight. Thank you for the tasty dinner and for being a good sport as Mattie gave you a tour of his room. Below you will see Mattie, Kathie, and I in his room. Mattie asked us to bury him under a pile of stuffed animals and the picture shows him breaking free from the pile (kind of like when you bury someone in the sand at the beach, only with stuffed animals).

After dinner tonight I had a 90 minute work related conference call to moderate. Part of me did not know if I was coming or going, or even making any sense. But I got through it. Thank you all for your continued support and love!

Sunday, August 24, 2008

Sunday, August 24, 2008

It is amazing that Mattie had such a good day despite a terrible night of sleep. We basically have lost a bedtime routine with him. It is rather funny, since it took us over 16 months to train Mattie how to sleep in the first place (thank God for the Ferber method). He always had a set time he went to bed and a bedtime routine that once we found, actually worked. Now things are very loose, and we are lucky if he goes to bed by 10pm or 11pm. Our bodies are on hospital time, as I call it. Basically meaning that your body is always on hyperalert. Mattie fell asleep last night by 10pm, but by midnight, he woke up in a stupor and crying hysterically. Peter and I tried to assess what was causing him to be so upset. But he was too hysterical to communicate with us. Literally it took us about an hour to understand that he developed a headache and was in pain. Our wonderful nurse, Ellen, was going through this whole process with us. She has the most calming demeanor and the patience of a saint! She called for Dr. Daniel to come in (a lovely resident we have had the opportunity to get to know). Daniel decided Mattie could have Tylenol. Sounds reasonable right? Well wrong! When Mattie heard that he needed Tylenol, he went ballistic. Needless to say, Tylenol was never consumed. So I would say we did not go to sleep until 3am. Peter and I felt like walking zombies today.

However, despite our night, Mattie had a good day. He spent most of the day off of an IV, and he was able to move around the hallways using a mask. I can safely say that we played EVERY board game located in the child life closet, and we are VERY much looking forward to seeing Linda tomorrow!

Mattie's counts are on the rise. His neutrophil count is back up to 50, from 15 of yesterday. Dr. Abu-Ghosh feels that Mattie has the chance of going home tomorrow. His blood bacterial cultures continue to be negative, which is a very good sign (meaning there is not a specific bacterial infection present so far). In all reality we do not need the numbers today to prove to us Mattie is doing better as we can definitely see it! In addition to board games, Mattie designed his own colorful t-shirt (using fabric markers), and worked on several bead projects. Mattie then got humorous, and grabbed a marker and started drawing on the dry erase board in the room. Below you will see his interpretation of Peter. Not flattering to Peter (big head with spots, well actually if you really want to know, Mattie claims the spots are NOT spots at all, but "snot." The beauty of being six.), but Peter was a good sport as Mattie was laughing at his expense.

We had several visitors today. Julie came over and brought us lunch. It was wonderful to see Mattie drink a vanilla shake again! Mattie has sworn off milk products for several days now. Which if you know Mattie, you know this is equivalent to a national emergency. Mattie devoured several chicken nuggets and lots of shredded cheddar. It was nice to catch up with Julie and we appreciate all the support she has and continues to provide us. Later in the day, we had a visit from Pam Johnson (a co-founder of Voxiva, the company Peter works for), aka "Mrs. Claus." Pam's husband Stephen looks just like Santa Claus, so Vicki has unofficially nicked named Pam, Mrs. Claus. Pam has a knack with Mattie, and she intrigued him with a gift she brought back for him from Italy. Basically it was the Italian version of the board game Battleship (a very popular game this weekend). Also, Santa sent an early gift, a little mini soccer fooz ball game. It was perfect timing, because Georgetown was having an actual soccer game right outside our window, and Mattie was tracking it on his game. Thanks Pam for coming by and for the gifts!

Tonight, Ann came to visit and brought us dinner. When she came I felt tired and somewhat sick to my stomach, but began to perk up as our visit progressed. I am happy to report that Peter and I both ate dinner. Thanks Ann for all the tasty treats and your continued generosity and energy. Thanks Julie for also doing our laundry and bringing it to Ann to deliver. Your efforts are so appreciated!

I wish I could track on a map all the places in the world who have been touched by Mattie's story. Mattie continues to receive prayers from Italy, India, Iran, Peru, Spain, Nigeria, Rwanda, Tanzania, Kenya, Mexico, Argentina, Canada, all over the continental US, and today, from a person who heard about Mattie's story in Hawaii. All these prayers and positive energy give us great comfort and strength. Mattie received an e-mail today from a classmate who is on vacation in the Outer Banks. We opened up the e-mail and there was a great picture of Mattie's buddy Tim, on the beach. Next to Tim, in large letters in the sand, was written, "Hi Mattie!"

For those of you who read our blog, who e-mail us and Mattie, call us, and think about us daily, we thank you. When I think about all the wonderful people we have in our lives, I can't help but reflect of the Jimmy Stewart movie, "A Wonderful Life." For those of you who don't know this I am a BIG classic/old movie fan! At the end of the movie, George Bailey (Jimmy Stewart's character) receives a gift from his guardian angel, Clarence. Clarence gives George the book of Tom Sawyer with the following dedication, ".... no man is a failure who has friends." I feel as if I did something right in my life because I am surrounded by people like you. Too bad it took such a tragedy in our lives for me to clearly see what was there all along. God bless you and my Mattie!