Saturday, September 6, 2008

Saturday, September 6, 2008 - Today started off bad, continued to be bad, but appears to be ending up better. Mattie spent most of the day feeling nauseous and vomiting (be that dry heaves or small amounts of digestive fluids). As of the writing of this blog post, Mattie has only eaten some mac 'n cheese and some small amounts of water over the last 2.5 days. Mattie is having a different experience with the Methotrexate recovery than he did last week, which everyone tells us is not unusual (i.e. kids recover differently on a dose by dose basis for each drug). While on the one hand it is comforting to know that lots of kids experience this, from my perspective (and Vicki's) it is unnerving and only adds additional angst, fear, and stress to an already awful situation.

When Mattie gets the Methotrexate, we have a combination of drugs to help fight the nausea and vomiting (emesis). Fortunately, Mattie is continuously being pumped full of fluids so we remove the threat of dehydration, but the vomiting becomes a wicked cycle that will simply continue until we break the cycle using the drugs. So, between Zofran and Ativan, we finally found the right balance this afternoon, which succeeded in making Mattie extremely relaxed (i.e. knocked out), but also calmed his system just enough to break the emesis cycle. After our experience with Benedryl yesterday we are focused even more on making correct and conservative decisions about how to best mitigate Mattie's symptoms. I feel this places us in yet another untenable situation where we as parents are forced to balance the desire to help Mattie recover with the least amount of pain, against make sure we are properly medicating him. The nurses and doctors have come to realize that both Vicki and I are getting smarter and smarter about the "tools" they have to treat someone like Mattie, but also that Vicki and I know Mattie the best and what his system and body are saying to us. For me, I welcome the chance to channel my apprehensions, fears, concerns and anger into performing analytical analyses of medications, pathways, CBC reports, UAs and a variety of other medical topics to help Mattie (it also distracts me from thinking about the emotion of all of it).

Today, Mattie had his buddy Charlotte visit along with her mom, Ellen (who by the way ventured out into a hurricane to see us... and if that's not devotion I don't know what is), who also brought lunch for us, some gifts for Mattie, and kept us company for a few hours. In spite of Mattie being in a foul mood and him periodically vomiting, we enjoyed seeing Ellen and Charlotte. Also, Mattie opened up a few gifts from Grant and Miranda Elliot this morning that I brought back from work on Friday. The Transformer was and continues to be the big hit of the day (I have to admit it is cool), so thanks Grant and Miranda for everything! Also, Mattie opened gifts that his SSSAS art teacher, Debbie Pollak sent along. Debbie, the angels are hanging over Mattie's bed and look great! It is nice to know there are angels looking after Mattie.

Mattie continues to be a member of the e-generation as he gets double digit emails and electronic cards each day. Mattie is even trading emails with JJ, who to the best of my knowledge is the only Jack Russell Terrier I know who is on email. Thanks Kim, Lorraine and Karen for the e-cards as they bring back Mattie's great smile when he sees them online. Thanks Alex for the beach and rainbows pictures! Also, thanks Rev. Rosemary (SSSAS) for your kind email and offer to come see Mattie as we will take you up on this offer.

Last, thanks to Christine and James Cooper for schlepping through a hurricane to bring us dinner. The pasta was devoured, the salad finished off and several of the "Mattie" cookies have disappeared! Also, the scrap book idea is brilliant and Mattie is also photo-documenting some of his creations from this admission as we speak.

So, tonight we continue on Zofran, Ativan as needed and hydration with the hope that Mattie both keeps his food down and that his Methotrexate level drops to 0.1 so we can go home.

Once again, many thanks to all those who think about us, pray for us, send us their messages of love, give Mattie gifts, worry about us, deliver us meals, hold bake sales and car washes, send e-cards at midnight, call daily and bring Dunkin Donuts coffee. It is heartwarming and truly overwhelming that so many people make so many efforts to support us and to take care of us! We are blessed.

Friday, September 5, 2008

Friday, September 5, 2008

Today is national Stand Up to Cancer Day! But we have renamed it "Stand Up to Benedryl Day" (thanks Alison for this great idea!)!!!

Before I explain why we renamed September 5th, "Stand Up to Benedryl day," I need to tell you a little about what happened to Mattie last night. We began Mattie's round of Methotrexate yesterday at 9:30pm. Before we started, Peter, myself, and Kathy (the nurse) decided that we would administer three drugs before and in conjunction with the Methotrexate to prevent Mattie from experiencing nausea (as a recap, Mattie experienced a lot of vomiting last week, pretty soon after the administration of drug). These three drugs worked last week, though they were administered at different times. We thought we would side step this process this week, and instead give all the drugs at one time. Within 10 minutes of the administration of all the anti-emetics (anti-nausea meds), Mattie experienced intense itching in his genitalia. Peter and I made sure he did not have a rash there, which he did not, but the itching wasn't going away. Instead it got more intense, so much so, that he was trying to pull his private part off of his body. It was downright overwhelming, and the first thing that came to my mind was that the drugs made Mattie delusional (a somatic delusion). Fortunately within 45 minutes, all the drugs kicked in and he fell asleep, but it was 45 minutes of torture to watch. I never knew 45 minutes could seem to last a lifetime. During this time, we were putting ice on him to numb the area, and literally we looked like chickens running around trying to make the problem go away.

I thought that perhaps the worst was behind us last night, but that was being too optimist. Mattie woke up with intense itching on his chest today. He kept scratching, and scratching! Of course the more you tell a 6-year-old not to scratch, well, you know what happens. He was scratching so intensely that we could see he was pulling on Sparky, his central line. Kristin (our nurse) observed this and we determined that we would give him Benedryl to help with the itching. Within two to five minutes of the Benedryl administration, Mattie became a different child. He started screaming (Mommy, Mommy, Mommy... as if he was looking for me, not realizing I was right in front of him, holding onto him), punching us, hitting us, and kicking us. He went totally wild. We could not hold him back nor could we calm him down. There was no rationalizing with him either. Again, he was having a drug reaction, but this time we knew the culprit, it was Benedryl.

Peter and I had to restrain Mattie physically with our bodies, and we went through this for 30 minutes, as the residents tried to figure out what to give Mattie. They were trying to confirm what to do with the attending physician, but to me these 30 minutes seemed like 30 hours. Finally, after harassing the residents and nurses, Peter happened upon Dr. Norosian (an Intensivist), who jumped into the room, and told the residents that Mattie indeed needed to be sedated. Dr. Norosian pumped Mattie with 2mg of Ativan (a larger dosage than Mattie usually takes - 0.5mg). Pretty soon after that administration Mattie collapsed in bed for about two hours. Needless to say, we have made it very clear that Mattie should no longer get Benedryl. In fact, the resident and I were joking about this tonight, because this notation is now in Mattie's chart as well as all over the hospital pharmacy. So join me, in "Standing up to Benedryl!" It is hard enough to contend with the chemo treatments, but to see your child dealing with such drug reactions adds a dimension of stress and uncertainty on an already complex situation. I felt like I was on a psych ward today, instead of the PICU!

In the midst of a challenging day, Mattie had a few visitors. Ann came to visit us this morning at 11am. She could see I was visibly shaken up and gave me the opportunity to get outside and get some fresh air. I actually ate outside and then even read a few chapters out of one of the books I am reading (which coincidentally is about a boy with leukemia; of course I did not know this until I started reading the book). Peter went to work today, so Ann's visit came at a splendid time. I felt as if I wasn't going through this process alone today. Thank you Ann for the munchkins (which I have to admit, I popped about 12 of them myself today!) and Peter thanks you for the coffee. Ann brought some gifts with her today from Debbie Pollak (Mattie's art teacher at SSSAS). Debbie is a big Mattie supporter. She gave him three gifts. Mattie is savoring them, and he opened only one gift today. The card on this first gift said, "for your eyes." Mattie is really loving all the Veggie Tale videos. Thank you! He will open up box 2 "for your tummy," and box 3 "for your ears" tomorrow. Also, thanks to Grant and Miranda Elliott for the gifts. Mattie is medicated so we are holding off on opening the gifts until he sobers up this weekend.

The big news is that yesterday's fundraiser was a major success! Thank you Siobhan for running the bake sale. I want to thank the following moms for donating something to the sale: Leslie Wooley, Jenny Cavannaugh, Olivia Kane, Jane Pisano, Carolyn Coker, Ann Henshaw, Ann Sterba, Tanja Harding, Junko Ferris, Susan Scharf, Deb Keefe, Vikki Bires, and Kathy Brown. Ann brought Mattie one of the bake sale items today, and we concur the cupcakes were delicious.

This afternoon, Mattie had a visit from Susan Scharf. Susan is a friend of Vicki's and she brought all sorts of fun things for Mattie to play with. Susan brought Mattie a rubber bat to place in the roof of his hut, a toy gun shooting out foam circles (Mattie loves this and his nurses are hamming it up), some stickers, body armor (to ward off the bugs), and a dinosaur that Mattie had to literally dig out of a block of clay. So today, room C5202 was transformed into an archaeological dig. The dig was just what Mattie needed to get his mind off of his nausea and itchiness. You can see some photos of the dig and the final product below.

Mattie is ALL business! He was motivated to find dinosaur bones in the clay.

We all need a dream team! Here is Mattie's:

Linda (Child Life Specialist), Jessie (Art Therapist), and Jenny (Art Therapist)

Actually they are like Charlie's Angels, aren't they? Smart, resourceful and cute!

Mattie with his finished dino product. He dug out every dino bone, and then assembled the bones to produce a dino skeleton.

Toward the end of the day, Mattie had another visit from Jenny and Jessie, and they stayed with us into the early evening, chatting and keeping us company. In the midst of their visit, they helped catch vomit many times, pick up after Mattie, and did it all with huge smiles, support, and optimism. They are truly special ladies. Mattie also had a visit from Dr. Toretsky. Though this isn't his day to visit the PICU, he came to find out how Mattie was doing after hearing about his rough night and day. He is very committed to Mattie, and extremely responsive to our concerns. Believe me I have MANY!

On the electronic front, thank you Susan, Charlotte, Bernadette ("Bunny"), Barbsie, and Grammie for your wonderful e-mails. Thank you Kim and Margaret for your wonderful e-cards. They continue to bring cheer to Mattie and all of us. Thank you Coach Dave for your lovely e-mail and phone message today. We are happy to hear about your vanilla shake consumption as that brings a smile to Mattie's face each time he hears this. I received some very special e-mails today from friends, and I appreciate your insights, support, and honesty. Here is to a better day tomorrow. I leave you with a quote from a book I am reading: "There's no hurt so great that love can't heal it." It is up for debate on the legitimacy of this statement, but Peter and I know for sure that your love is a powerful force that helps us through each day.

Thursday, September 4, 2008

Thursday, September 4, 2008

Mattie slept through the night! However, Peter and I are so used to getting up at 4am, that we were wide awake today and couldn't go back to sleep. We are on hospital time and are learning to sleep in two hour increments. Needless to say, we were scheduled to be in the clinic today by 10:30am to get Mattie hydrated to prepare him for Methotrexate. But I was so tired and I couldn't get it together, that we arrived at the clinic over an hour late.

Mattie started his day checking his e-mail. His preschool director, Kim Messinger, sent him two e-mails. Kim has adopted a sea turtle for Mattie, and Mattie will be receiving information soon about his turtle, as well as ways to track his turtle on line. This is a wonderful way to keep Mattie stimulated, and we want to thank Kim for such a thoughtful gift. We will keep you posted about this new addition to the family. Last night, I also received an e-mail from Kathy Harris, one of Mattie's preschool teachers at RCC. Kathy is a talented and dedicated teacher, and Mattie is very fond of her. So much so, that Mattie pined for Kathy the first couple of months of kindergarten. In Kathy's e-mail to me, she mentioned that she and Kim are concerned about our level of isolation this coming year. Kathy knows that Mattie and I thrive on interacting with others. Kathy would like Mattie to serve as her junior classroom aide this year in the block room. She will welcome him whenever he is able to come to the school. RCC, to my knowledge, has never had a junior aide in the classroom. Though Mattie is no longer a student at RCC, the RCC community continues to stand behind its own, and has no trouble coming up with creative and novel ways to do this.

The first fundraiser for Mattie occurred today. Thank you Siobhan Starr and Ann Henshaw for coordinating this. The bake sale was held at the Braddock Road Youth Club Soccer Annual Uniform Exchange in Fairfax. You can see the event listing at: http://www.brycsoccer.org/. It is very heartwarming to see all the support Mattie is receiving, and in a way this support is powerful and healing medicine in and of itself.

Mattie arrived today at the Lombardi Clinic and met up with his buddies, Jenny and Jessie (our wonderful art therapists). Jenny knows that Mattie LOVES packing boxes, so she is now saving them for him. Mattie loves to create and build with boxes. Mattie was very excited to see the box Jenny got for him today, and he instantly started working on transforming the box into a "hut." Not just any hut, but a hut he can crawl into to escape from the nurses in the PICU. In addition to creating a door with a door knob, Mattie's hut also has a rug, bats living under the roof, and wall pets. You may be asking yourself what are wall pets? Well the wall pets protect the hut. If Mattie's nurses try to come into the hut, then the pets attack by spitting and vomiting (the perfect plan for any six year old boy)! You can see Mattie's hut with Mattie in it below. He has already tried the hut out on Kathy tonight (his nurse). Kathy is a good soul and played right along with Mattie.

As you can see from the picture on the left, Mattie's knees have bandaids on them. Mattie tripped and fell yesterday while running inside. It was like a surreal experience. I could see it happening, but there wasn't much I could do about it, since he was far ahead of me. For most six year-olds, such a fall and scrape would be no big deal, but with Mattie and his compromised immune system, such a scrape could be dangerous. I found myself focusing on these scrapes throughout the rest of the day, and at some point, I had to say, enough is enough. We cleaned it, I told the doctor about them, and we will just keep an eye on it if something seems to change in his condition.

Tonight, we had a visit from the Brandt family. Thank you Hilary for a lovely dinner, and for Missy and Matthew for visiting with Mattie. Mattie loves the Leapster game and books you brought him.

We had a good chat today with Dr. Toretsky, Mattie's oncologist. We told him about our desire to consult with other professionals regarding Mattie's condition. I think part of the issue I am dealing with right now, is a sense of guilt. I feel that Mattie's diagnosis and treatment plan evolved so quickly that on some level I feel as if we did not have time to understand Mattie's case and get multiple opinions about the best course of treatment. This has nothing to do with the fact that Mattie has the most able and competent doctors overseeing his treatment, but this is more a reflection of the fragile state a parent is in when dealing with all of this. We knew Mattie needed chemotherapy right away to avoid the proliferation of more tumors, but I think we both feel now that we need to be as educated as possible about surgery options and their ramifications for Mattie before proceeding forward.

It is 9:30pm now, and Kathy is starting the infusion of Methotrexate into Mattie. If you recall my description of Methotrexate, I describe it as highlighter yellow. Kathy administers it with very thick rubber gloves. Mattie took one look at this yellow stuff tonight that was coming into his IV and said to Kathy, "please stop the pee pee." We all broke out in laughter, Mattie included. I guess from a six year old perspective the Methotrexate could look like "pee pee." We have no idea what the night will exactly hold, but one thing is for certain, we are very grateful to have all of you in our lives. I received several e-mails today from friends. I can't tell you how much it meant to hear you say we are doing a great job, and how in awe you are of what Peter and I are able to accomplish. Good night and God bless you and our Mattie!

Wednesday, September 3, 2008

Wednesday, September 3, 2008

Mattie received this wonderful note today from Katarina Briedova, the Chapter Relations Manager at The American Mental Health Counselors Association. We wanted to share it with you!

M: is for Maginificent, loving one

A: is for Active, so full of fun

T: is for Terrific, a caring heart
T: is for Trusting, intelligent and smart

H: is for Honest, cheerful and smiley

E: is for Excellence, thought of highly

W: is for Worthy, a pleasure to know

Like the night before, Mattie woke up this morning at 4am. This time instead of screaming for help, he came into our room and tapped on my arm. Needless to say, none of us got a good night sleep. Peter and I are trying to figure out what is causing Mattie to wake up at 4am, is it nightmares, is he scared, or is he used to being with us in one hospital room? Who knows, but not being able to sleep even at home is wearing.

Today was Peter's first day back at work after being off for over a month. I knew Peter had to go back, but I felt a little uncertain how the day would play out without him around. Mattie was a bundle of energy today to say the least. We literally played every game possible, built lots of lego structures, read some books, and even played with JJ. As the afternoon rolled around, I was wiped out, and Mattie was ready for the next round. Fortunately Margaret (Mattie's first preschool teacher from RCC and a good friend) came over and added new energy to the equation. Margaret brought Mattie some wonderful baked things (a rolled pumpkin bread stuffed with a cream cheese filling and banana muffins!) that she made as well as two bags full of sea shells she found on her summer vacation. Margaret brought a child friendly shell book for Mattie, so that he could try to classify the shells in the bags. Mattie had a good time with Margaret doing all sorts of things: looking at shells and beach glass Margaret found, playing trains, visiting with JJ, as well as doing some Highlights hidden picture puzzles. Somewhere in the midst of all this playing, I went upstairs to rest. Thanks Margaret for this opportunity and for sharing your glorious roses with me!

Thanks to the generosity of all of you, Mattie continues to get gifts. Today Mattie opened up a wonderful dinosaur encyclopedia sent to him by Vicki's association, The American Mental Health Counselors Association (AMHCA). Thank you AMHCA for thinking of us and for all your wonderful messages. Thank you Mrs. Eaton (from SSSAS) for the wonderful card and special hotwheels stickers. When Peter came home from work today, he was carrying more packages with him. His colleagues from the Peru office of Voxiva, sent Mattie lots of wonderful gifts such as a spiderman kite, a wood model kit of dinosaurs, a Peru T-shirt, amazing stickers, a beautiful elephant carved puzzle, and glow in the dark stars and planets. Thank you Nathy, Sessy and Yina, Gustavo and Leni! Also, thank you Hygela for the nuts and the dancing and singing yellow bird as Mattie got a HUGE giggle from it! It is amazing how Mattie's story is touching people all over our world. Also, many thanks to Rana for a delicious meal tonight. The pasta was great and Pete loved the Cesar salad!

At around dinner time, we had a knock on our door. It was Frances Weiner, our neighbor. The irony about this, as Frances admits, is that we never really spoke much and got to know each other until this tragedy hit our complex. Frances gave Mattie a very special stuffed animal that was designed for him by Phebe Phillips. The animal is a cowboy puppy, and is almost as tall as Mattie, as you can see in the picture. Phebe signed the cowboy (AKA Dandy Dog Dakota), and Frances and Ben personalized it by saying: "To the bravest cowboy we know!" You can see the personalized message below, it is painted on Dandy Dog Dakota's foot. This cowboy, we feel is symbolic of Mattie's personality and also the kind of spunk and ruggedness he will need to fight this disease.

On the electronic front, thank you Kim for your wonderful e-card today. It helps start the day off on a good note. Thank you Lana, Susannah, Grammie, and Abigail for your e-mails. Abigail, we loved seeing you ride your two wheeler.
We also received a special e-mail today from Caroline Eaton, a fourth grade teacher at SSSAS. I had the opportunity last year to hear Caroline address the children at chapel. She told them about her unexpected summer plans of having to have a major surgery and the process it took her to recover. Her story was very moving and also I felt took a lot of courage to stand up there in front of the children and express her reactions and ways she coped with her surgery. Caroline has been following Mattie's story and read on his blog yesterday that he was composing away at the piano and that I was looking for a teacher, who could stimulate his mind, and channel his energies toward music, but in a low-key manner. Caroline has offered to teach Mattie the piano this year, and I feel she really understands the fight Mattie has before him. She has offered to teach Mattie for free. Not that we would allow this to happen, but it speaks to the kind of staff and people at SSSAS.

Peter and I are dealing with so many losses in our lives right now. One of which is a professional sense of loss. Though in the grand scheme of things, this shouldn't even be on my radar scope, but to some extent it is. I had high hopes, goals, and dreams for this year, as I was elected to run a national mental health counselors association. Though Mattie is my number one priority, I can't help but reflect on this loss in my life. I do not subscribe to a 'woe is me' philosophy in life, but none the less, I am saddened by what life has thrown upon us, and how I feel a lack of control over the direction and future of our lives.

This evening, Mattie and I were in the car headed to pick Peter up at work. As we were crossing through the GW Foggybottom campus, Mattie observed all the students walking around. It was at that point that it hit him, he isn't going to school. He told me that he did not want to go to the hospital tomorrow, but instead wanted to go back to school. He worried that he would not be able to attend first grade, and then expressed concern that SSSAS wouldn't have room for him if he did not attend this year (that caught me by surprise). I explained to him that everyone at SSSAS understood what he was going through and were behind him every step of the way. I told him that when he is ready to go back to school, there will definitely be a place for him. He dropped the subject, but I have a feeling it will resurface again. None the less, I am happy he is beginning to process this, because in my mind a child not being able to attend school, is equivalent almost to a child not being able to play. It just doesn't seem fair.

I would like to end today's posting with an email blast that Bob Weiman sent out today to all the families of the lower school at SSSAS. What can you say about a school that so deeply cares about a six year old boy as well as the impact Mattie's illness may have on all the children at the school! All I can say is THANK YOU, SSSAS!! Words and actions provide great comfort to our family!

------------------------------------

Important Announcement

Dear Lower School Community,

While some of you may be aware of what Mattie Brown (a kindergartner during the 2007-2008 school year) and his family are facing, others may not be, so we wanted to share some information about Mattie's illness, what we can all do to help, and how to work with your own children through this difficult time. This summer Mattie was diagnosed with a rare form of bone cancer called Osteosarcoma. He is currently undergoing chemotherapy at the Lombardi Cancer Center at Georgetown. He stays in the hospital for several days at a time during treatment and then goes home for several days before beginning another round of chemotherapy. He will begin his third round tomorrow.

We know that this situation brings up many questions, and we wanted to anticipate them and answer them as best as possible. The first question that many of you will ask is "What can I do to help?"

First of all, please keep Mattie and his family in your thoughts and prayers. Our Lower School will pray for Mattie each week in chapel. Our new chaplain, the Rev. Rosemary Beales, has offered her support to Mattie's family, and she will of course serve as a spiritual guide to our entire community as well. You can reach Rev. Beales at (703) 212-2919 or rbeales@sssas.org.

If you would like to learn how Mattie is doing on a regular basis, you can read the blog that Mattie's parents, Vicki Sardi and Peter Brown, have established, http://www.mattiebear.blogspot.com/ (Please know that their thoughts and reflections are geared towards adults and not students.). The upper left-hand corner of the blog also includes information about how to join "Team Mattie," a growing group of people who have provided the family with everything from meals to video games to pajamas. Ann Henshaw, the mother of one of Mattie's classmates, is the coordinator of this effort, and many Saints families have been actively helping since they learned of Mattie's illness. When you sign up to receive emails, you will learn more about what the family needs as well as upcoming fundraisers.

As a school we want to make sure that Mattie feels connected to his friends and the school community. On a regular basis first grade classes will send notes, cards, and drawings to Mattie as well as digital pictures of school events and activities. We are working with his parents in regard to sending classwork that will help him to feel "in the loop" with classmates but not so much that he will feel overwhelmed. We will also have some optional after school opportunities for families to offer their support in different, creative ways. Joan Holden and I will be in touch with Mattie's family about a fundraiser walk that is being organized by Mattie's mom's George Washington University students and will take place on our campus later in the year. You can contact me via phone or email if you have additional thoughts or ideas about how to support Mattie and his family.

We know, too, that many will also wonder how Mattie's illness may impact other students at school. Ms. Susan DeLaurentis, our counselor, is working closely with our first grade teachers to monitor how students are coping with Mattie's condition and to advise them on how to answer difficult questions that may arise. Ms. DeLaurentis offers this guidance if your child comes home with questions about Mattie's health:

1) The most important thing to do is to listen and pay attention to your child's concerns.
2) Do your best to respond to your child's questions. Let their questions be your guide as to how much information to provide.
3) Do not offer more information than children can handle. Children need brief, simple information that should be balanced with reassurances.
4) It is important to convey the facts - appropriate to their age- without too much emotion.
5) Avoid information overload, or providing information about which your child has not inquired.

6) It's ok to say, "I don't know."

Children express their feelings and reactions in different ways. It is important not to inadvertently impose our own adult fears and reactions on our children. If you have specific questions or concerns about such responses or the emotional well being of your child, please contact Ms. DeLaurentis directly at (703) 212-2780 or email her at sdelaurentis@sssas.org.

The outpouring of support for this wonderful family has been uplifting. We hope that this letter has been helpful in providing you with information about the situation, ideas about how you can help, and guidance on working with your children during this very difficult time. Please do not hesitate to contact Rev. Beales, Ms. DeLaurentis, or me with questions, concerns, or ideas.

Sincerely,
Robert D. Weiman
LS Directorbweiman@sssas.org St. Stephen's & St. Agnes Lower School

400 Fontaine Street Alexandria, VA 22302

Tuesday, September 2, 2008

Tuesday, September 2, 2008

Picture:

Mattie in his Oilers Jersey and hat. Thank you Capital Health (one of Peter's clients in Canada)! We'll get the whole family in the shot next time with our matching Oilers jerseys and hats.

Despite being very tired, I find that each night I become wired at 1opm, and it is then that I get my second wind. I was researching things last night as it relates to Mattie's health, but at midnight, Peter said enough is enough, and literally walked me to bed and tucked me in. He took all my papers away from me. It was a good plan actually considering what the night held for us. So picture all of us asleep and resting peacefully last night, with an emphasis on resting in our own beds (which I must admit I took for granted prior to all of this). Then at 4am, out of deep sleep I am awakened to the words, HELP! HELP! HELP! I literally flew out of bed and down the hallway and came crashing into Mattie's room. Mattie was in his bed, curled up in a ball, and looking very frightened. Peter and I asked him what had happened and if he felt okay. He really did not respond to what was bothering him, other than he wanted me to stay with him in his room. So every parent who has ever spent a night of sleep in their child's room, knows the extent of sleep I got last night.

So today is Tuesday. As many of you know, Tuesday has become one of my least favorite days of the week. It is shower and dressing changing day! Mind you before Mattie was diagnosed with cancer, he used to love taking a bath or a shower. Now, showering is like pulling teeth. We encouraged him to get the process over with, since his buddy Charlotte was coming over in the afternoon. However, as soon as he heard the water in the shower, he literally had a tantrum and started crying hysterically. After trying to reason with him for 45 minutes, Peter and I were getting worn down. But we held our ground, since he very much needed to get washed up. I have concluded that he doesn't like putting a plastic bag over sparky to protect it from getting wet while he showers. Specifically he doesn't like the tape that is used to hold the bag in place over sparky. A friend of ours recommended we wrap this portion of Mattie's body in the press and seal saran wrap. I will have to try it, because I will not use the bag idea again. I was surprised by his reaction today, because I thought the big problem would be around getting his dressing changed. But he handled that quite well instead.

This afternoon, Mattie had a visit from Charlotte and her mom, Ellen. As I always tell Ellen, I am very grateful to her. She is the mom who told me about the tennis camp Mattie was enrolled in this summer. Thank God for tennis camp. In my mind tennis camp aggravated Mattie's condition enough to bring it to our attention. The kids had a great time, examining things under Mattie's new microscope (a basil leaf, a marigold flower, and even a dragonfly) and playing all sorts of games together. While they were playing, Ellen and I chatted. We chatted about Mattie and a lot of other things not related to Mattie. Ellen then asked me if I minded talking about other things, and she told me that she felt bad that we got off on this tangent because that did not mean she wasn't thinking about Mattie or us. I found that comment to be very sensitive, and it got me to think about how others in our life are processing what is happening to Mattie, Peter, and I. I must admit that I have been very wrapped up in our own processes, that I forgot how this may be impacting others that care about us. It was very interesting to learn today how Charlotte is understanding and processing Mattie's illness. I am not sure why I am so surprised by Charlotte's reaction (Charlotte is very devoted to following Mattie's progress and is really trying to understand what is going on with him and how to support him.), maybe because I never really thought that friendships (like I understand them to be at the adult level) were expressed or felt as deeply at the child level. Again, I am learning a lot about the capabilities of six year olds.

Below you can see some pictures of Mattie and Charlotte running around. Charlotte brought some stuffed animals for Mattie today that she got for him on her beach trip. Mattie was working hard at getting Charlotte's attention with these animals, mainly because I think he loves to hear Charlotte laugh (she has a wonderful laugh, that when you hear it, you can't help but laugh yourself). Thanks Charlotte for the Hair Fairy book! Mattie really loved it tonight.

Today was the first day of school at St. Stephen's and St. Agnes, but I am not sure Mattie understood this. However, it was so nice to get a phone call from Bob Weiman (Mattie's head of school) today. Bob acknowledged in his message to us that even though it was the first day of school (which is always exciting) on some level it was bittersweet for him since Mattie wasn't there. A phone call is such a simple gesture, but his message meant the world to Peter and I. It meant a lot because it helped us to feel like we are still a part of the school community and that Mattie will not be forgotten.

Today, Pete made a few phone calls, first to Dr. Melinda Merchant, an Oncology doc at Sloan-Kettering, and a personal friend of Arti and Srinivas Varanasi (Srinivas works with Pete at Voxiva) who helped get us connected to Melinda. Melinda was very helpful and we will likely travel up to MSKCC to get a second opinion/consult on Mattie soon. Pete also spoke with Dr. Nita Seibel, formerly of Childrens and now with NIH on the same topic. Nita has been following Mattie's case indirectly, and we are going to see her next week for a consult. Many thanks to Allison Portnoy who got us in contact with Nita. Both Doctors were very helpful over the phone and gave Pete a fresh perspective on things as well as made us more comfortable with the decisions that we have made and the steps we have taken.

Of course no day would be complete without a visit from JJ. JJ loves to come into our home and he is very intrigued by Jack (Mattie's special Jack Russell terrier stuffed animal - thanks John!). Below you will see a picture of JJ trying to play with Jack. We suspect that JJ thinks Jack could be a play buddy! It is amazing how our furry friend JJ brings such happiness into our lives.

Later this afternoon, we had a wonderful visit with Beth Engiles. Beth and Peter worked together at Arthur Andersen, and Beth delivered us a tasty dinner (one of my favorites, a vegetable pizza from Bertucci's) and some gifts for Mattie. Thank you Beth for the Scooby Doo pjs, and for the wonderful magic set collection. I must admit I can't follow magic trick instructions, and I am going to turn to Bob for some assistance! Mattie loved going through the box of tricks, and I am certain that it is only a matter of time, until he figures it all out. Beth, thank you also for treating Peter and I to a day at a spa. What can we say!! The picture below shows Mattie trying to perform a magic trick for Beth.

On the electronic front, thank you Kim and Margaret for your wonderful e-cards. The cards brightened up our day and brought a smile to our faces. I also want to thank Karen, my lifetime friend in NY for her thoughtful e-mail today. She sent Mattie an e-mail with pictures of a bunch of FAMOUS and well accomplished bald men in our society. Mind you one of the pictures was of Charlie Brown. Mattie loved it! Thank you Ann and Alison for checking in today and for always asking how we are doing. We plan on enjoying our Wednesday at home before returning to the hospital on Thursday. Thank you all for your love, support, and prayers. We consider ourselves very blessed to have you in our lives.

Monday, September 1, 2008

Monday, September 1, 2008

I am happy to report that after a weekend full of activity and visitors, Mattie slept in this morning. In fact, he did not wake up until around 9:30am. That is an all time record for Mattie. Dr. Sydner came in after Mattie awoke and told him the good news, that his methotrexate level dropped to .09 and that he could go home! Peter and I packed up Mattie's room in record time, which is a feat considering if feels like we have to bring our home with us and then pack it up each time we leave. While we were packing though, Mattie was playing and built a tower made out of markers as you can see on the left!

After packing up the room, I then helped Mattie change out of his PJs into regular clothes. Before doing this, he went to the sink to wash his hands and face, and for the first time in days he actually had the opportunity to look at himself in the mirror. Prior to today, he really did not glance up at the mirror. As Mattie was washing his hands, he began to comment on what he saw reflecting back at him in the mirror. He told me that he looks terrible with no hair, and then said this is "embarrassing." At first I was surprised to hear this because he had been handling the hair loss so well, but I knew at some point this would hit him, and I wanted to hear his concerns and fears. So Peter and I explained to him that his hair loss was temporary and once he is off all the medicine, his hair would eventually grow back. We told him that this also means that the medicines he is taking are working and doing their job. We reminded him of all our friends who had cancer and he acknowledged that they all had their hair now. But what really sold him was when we pointed out that his Uncle Chris has no hair either, and he isn't embarrassed. That Chris' hair wasn't going to grow back, but Mattie's was. Mattie was just fascinated by this difference between him and his uncle, and was then able to move past that moment to the next activity. Again the beauty of a child! Mattie can move in and out of these emotional moments, but of course after each episode like this, it weighs much heavier on my mind and I can't move past it as fast. But I am learning.

When we got home today, Mattie wanted to go for a walk around our complex. It just so happens that on our walk, we came across a cicada and a cricket. Mattie thought these bugs were so neat, that he ran back home to grab our camera and take pictures. You can see our small friends below. For those of you not fond of bugs, I send my apologizes. Mattie seems to be very interested in photography, and so whenever he wants to take my camera and capture something, I embrace it.

Cicada on the left and cricket on the right!

Before we learned about Mattie's diagnosis, we had a neighbor, Susan, who was moving away and did not want to take her baldwin upright piano with her. Susan was fond of Mattie, and she told me that she wanted to give her piano to Mattie so that he could learn to play. I jumped at the chance to have her piano, since I feel music is an important component of life, and what a wonderful skill and outlet to have to turn to. Before Mattie got sick, I was looking into piano lessons for Mattie, but after his diagnosis, this idea fell by the wayside. Until today that is! I was sitting at our dining room table this afternoon, and trying to catch up on life. While I was doing this, I was hearing music. I was wondering where was the music coming from because I found it intriguing. I looked up at the piano, and there was Mattie totally engaged and composing his own music. I thought this was such a special moment, so much so that I ran for my camera and tried to catch small videos of this moment. It was my intention to share these videos with you, but for the life of me I can't get them to upload to this blog. I will get Peter on the case to figure this out.

Later on today, my friend, Amany, and her family came to visit. Amany and I went to graduate school together, and have helped support each other through all sorts of highs and lows. It is hard to believe that Amany has two teenage children (Mimi and Tarek) now, since I remember them when they were two and four years of age. Mimi and Tarek did a great job playing with Mattie and they brought him a neat gift. A microscope that displays on the TV. So far Mattie has examined my toes, hair, his ears, and even grains of salt. The possiblities are endless. They played a rousing game of Uno, and then Mattie pulled out all the stops. He got out his magic bag given to him by Bob Weiman and started performing magic. Mimi and Tarek played along with Mattie and by the time he was finished everyone wanted to know how he did these tricks. I found it fascinating that Mattie remembered how to do all these tricks and was energized and animated as he performed what he learned. Bob you would have been proud!

Amany, thank you for the wonderful dinner. You out did yourself. You will love to know that Mattie ate a whole bowl full of your whipped yams. As for the rice crispy treats, I can't remember the last time someone has made those for me/us. It reminded me of something my grandmother would have done for me when I was sick. Thanks for bringing back that lovely memory for me.

Left: Mimi, Mattie, and Tarek

Right: Amany and Vicki

Peter (holding JJ - our resident Jack Russell Terrier), Ziad, Tarek, Mattie, Amany, Mimi, and Vicki

Mattie received gifts today in the mail. Thanks Margie and Bill for the beautiful black stuffed teddy bear and thank you Merritt, Ham, and Hunter for the great lite bright. JP, thank you for the wonderful Nationals t-shirt, and thinking of Mattie while you were at the game today. Mattie enjoyed coming home to your packages. On the electronic front, Mattie's buddy Campbell sent him a wonderful slideshow of the lego brick fair that he went to this past weekend. Mattie thoroughly enjoyed seeing all the displays made of legos. He almost felt like he was there. Thank you Charlotte, Karen, and Virginia for sending Mattie e-mails. He loved them. Kim and Lorraine, thank you for your great e-cards. It perks up our day! Grammie, Mattie loved the duck story and even shared it with Dr. Synder this morning.

It is nice to be home and we are looking forward to the simple things now, a comfortable bed and a decent shower. Amazing how all of this can change your perspective and priorities. I thank each and every one of you for your thoughts, e-mails, gifts, and letters. I received a very touching letter today from a SSSAS mom and I just wanted to say thank you Laurie!

Sunday, August 31, 2008

Sunday, August 31, 2008

Mattie woke up this morning full of energy and ready for an activity. As you can see, Mattie has lost most of his hair. Ironically, though Mattie knows he doesn't have hair any longer, he seems totally fine with this. Initially I was unsure how he would react when his hair started falling out, but like every step of this process so far, he has risen to the occasion, and it is me who is learning from Mattie. I am seeing the world through my child's eyes. It is a world in many ways that is more innocent, non-judgmental, and not clouded by previous experiences.

Mattie wanted to go for a walk with Peter soon after breakfast, so he put on his new bathrobe (thanks Charlotte!) and grabbed his IV pole and was headed out of his room. He walked the entire fifth floor unit, until Dr. Synder came to find him. Dr. Synder is our Hemonc (slang for Hematology and Oncology) doctor on call this weekend, and she has examined Mattie each morning and has gotten to understand his strong willed personality. But she told Mattie she is just like him, so they seem to understand each other well. Dr. Synder told Mattie that he was doing very well and most likely would be going home on Monday morning sometime.

While we were in Mattie's room this morning, someone knocked on our door. There at the door was a tech with her mobile CT scan machine. She told Peter and I that a chest x-ray was ordered for Mattie and she wanted to proceed with the CT. Even in my tired state, I knew that wasn't going to happen. I literally said, "I don't think so!" I told her that I wanted to hear from our nurse why an x-ray was ordered and who ordered it. Nguyet, our nurse, came running back to our room, telling us that this was a mistake, that no test was ordered for Mattie. I guess I mention this because for the past four weeks that we have been in the PICU, I have observed several children in the hospital, day in and day out, who do not have a family member/advocate present during their treatment. I worry about these children, because even though the health care industry may be well intentioned, a close eye needs to be kept on each patient. I am pretty confident that if Peter and I were not here in the room this morning with Mattie, he would have been given a needless x-ray.

Mattie had another visit today from his cousins. Mattie was very excited by their visit, and Nat, Sydney, and Will were great with Mattie. I can now say I know how a Ninetendo DS and iPOD work. My niece and nephews are bringing me into the 21st century. The funny part is Mattie just needed to see these things only once and he got it instantaneously. Again, this is the beauty of being six and being exposed to all sorts of technology at a young age. Below you will see some photos of our day together.
Mattie was fascinated by Sydney's ability to do back flips. So we had to document this moment!















Mattie, Nat, Will, and Sydney




















Will, Mattie, Vicki, Lisa, Nat, and Sydney


Later on in the afternoon, we received a visit from several of Peter's buddies from Arthur Andersen. These have been loyal friends and colleagues to Peter over the years. Enron can impact a company, but not the fine people who worked in it. Below you will see a picture of this reunion. I would like to mention that the fellow in the lower right hand corner of the picture is John Bonds. John is a melanoma cancer survivor, and once he found out about Mattie, he has been incredibly supportive of Peter and our family. Thank you John for all the wonderful materials, t-shirt, wrist bands, and other gifts from Lance Armstrong's foundation, LiveStrong.





Nat, Sydney, Chris Crowder, Jeanine Bonds, Tom Disantis, Cassie Disantis, Will, Peter, Mattie, and John Bonds

After Mattie said good-bye to his cousins and the Arthur Andersen folks, he then had some additional visitors. Linda (Child Life Specialist) and Jenny (Art Therapist) stopped by to visit with Mattie. They had taken over 100 children today, who have or had cancer, to a National's ballgame today. They knew Mattie wasn't able to attend the game, so in their usual classy and thoughtful style, brought National's stadium to Mattie. They showered him with gifts from the game and lots of tasty snacks. Thanks Linda and Jenny for always being there for Mattie!

Right after Linda and Jenny's visit, Jude came into our room. Jude is a volunteer musician at the hospital and he comes to the PICU on Sundays. He entertains the children, and comes into each room with a wagon full of fascinating instruments. In minutes Jude got all of us playing instruments and having a good time. In fact, Liz Chiaramonte (a wonderful SSSAS mom) came to visit us and to drop off dinner while Jude was in our room. Before Liz knew it, Jude had her playing a rain stick and even a drum. Thanks for being a good sport Liz! Above, you will see a picture of Mattie with Jude. Mattie is holding a huge rain stick. Thanks Liz for the wonderful homemade chicken soup, bread, salad, and wonderful cake. Actually all the nurses who came into Mattie's room commented on the tasty smell of the soup! Who wouldn't feel better after eating homemade chicken soup?

On the electronic front, thank you Barbsie, JP's mom (Jacky), Charlotte, Susan, and Phoebe the dog for your wonderful e-mails. Thank you Kim for your wonderful e-card. I don't know how you find these great cards! Thanks to Kazu for the great get well dance video. All these good wishes and thoughts make Mattie feel very cared about and special.

I want to end this e-mail on a spiritual note. I received a lovely e-mail today from Ashley Goff Glennon. In addition to being a RCC mom, she is also a minister. She wrote the following to me and I found it so meaningful that I wanted to share it with you. Thanks Ashley and goodnight to all!

Ashley wrote: "I was struck a week or two ago when you wrote that Mattie wanted to be "reborn" again. I've been thinking about this over and over again, picturing Mattie utter the words and the conversation going on inside of him to prompt that hope and dream. My mind did wander to the story of Nicodemus in the beginning of the Gospel of John. Nicodemus was a Jewish leader and came to Jesus and said "your a pretty amazing teacher, you clearly can't do the miracles and healings without God." Jesus then told Nicodemus, "You can be part of the movement of God if you are re-born, born again, or born from above." Nicodemus' literal brain started to go into action and asked how he could go back into his mother's womb. You can't do that twice! Jesus said to Nicodemus, "well, you are a pretty important theologian with lots of religious training. But you still don't get it, do you?" Jesus was telling Nicodemus you can have all the "smarts" in the world, but you need to be transformed by God, changed by the Spirit not by just "thinking and intellectualizing" but participating in the healing and compassionate acts of Jesus. To be born again means you are changed, you become a new being for the sake of Life. Mattie's request to be "reborn" has biblical roots! He isn't the first to ask of this. Jesus wants Nicodemus to catch on that he is being born again, he is being changed, transformed and will come out a new person. I picture the liquid in those IV's being Mattie's "re-baptism." The baptism language is used in the Nicodemus story. You can't be re-baptized literally but those liquids are immersing Mattie into this journey to new life and rebirth."