Mattie Miracle 2021 Walk was a $125,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

August 16, 2008

Saturday, August 16th, 2008

Saturday, August 16th, 2008 - So, it was another good day. Mattie and Daddy went for haircuts with Melo today. Mattie got a #1 on the sides and a #2 on top. Vicki calls Mattie, her cute Airforce guy! Mattie had some visits from JJ, our resident Jack Russell Terrier (thanks JP)! JJ is keeping a very close eye on Mattie, and makes periodic visits down to see Mattie to make sure he is okay. Later on in the morning, Mattie was in a bit of a funk. So mom pulled out the bubbles. Not just any bubbles. Mattie's RCC buddy John, gave Mattie this very unique bubble maker. Mattie learned how to make huge bubbles today using corn starch, water, baking powder, and yellow dish soap. Then we used this orange wand to create some of the largest bubbles ever. From the picture below, it is hard to tell who is more amazed, Daddy or Mattie!! Needless to say, this activity perked all of us up. Thanks John!

In the afternoon, Mattie had a playdate with his SSSAS Buddy, Abigail Henshaw (and daughter of his surgeon). The two of them played for hours and had a great time being kids. It is a sheer delight to see Mattie smile! As Mattie's parents we are trying to do everything possible to make his life somewhat normal, and what we are quickly observing is that Mattie's friends really provide the BEST MEDICINE. When we watch Mattie with his friends, there are times where we almost forget how sick he is and the long hard road he has in front of him. It is the beauty of watching children being children... they live for the moment, and Peter and I are beginning to appreciate this and we feel there is so much we can learn from our younger friends.

Ann came over as well and brought us great sandwiches and sides. In addition, Ann and Abigail brought a genuine red sox hat and shirt that they got while at the infamous Rangers-Sox, 36 run game last Tuesday. Go Sox! Ann, we cannot thank you enough!

So we are settling down at 9:30pm at night and doing well. We will take every one of these good days as we can get! Our thanks goes out to everyone who reads our blogs, e-mails us, calls us, and supports us in so many different ways!

August 15, 2008

Friday, August 15th, 2008

Friday, August 15th, 2008 - It was another good day, at home. Mattie woke up at 7:15 this morning, and had only a little toast this morning. He spent the morning hours on the couch, watching some videos and taking it easy.

Early this afternoon Mattie's kindergarten art teacher, Debbie Pollak from SSSAS paid a special visit to Mattie since he missed her art camp this summer because of his illness. Debbie was so very sweet to come over on a Friday afternoon equipped with huge balloons, supplies, materials and a whole lot of love and energy. Mattie, Debbie, and Vicki made paper following an ancient Japanese method which was not only fun but educational. Between the paper

drying sessions, Debbie showed Mattie slides of her trip to Japan when she learned the paper making process. Mattie thoroughly enjoyed it and had a very good afternoon. Thank you Debbie for being you! Concurrent with Debbie's visit, we also had a visiting Nurse, Sharon, come over and walk us through the box of supplies and processes that we had already learned while Mattie was an in-patient at the PICU. We will continue to have supplies regularly delivered to us so that we may maintain Mattie's lines. Tonight, Vicki flushed both lines and did the Heparin flushes without incident. It's amazing to think that we're playing with a tube that is only inches away from Mattie heart, but those are the stakes we are dealing with these days.

Mattie had his regular Friday night pizza night, but it unfortunately took a turn for the worse. Mattie threw up his entire dinner and the snacks beforehand around 8:00pm tonight. After paging the on-call doc Dr. Myers (who returned our page in about 3 minutes) and discussing with him the situation, we all believe that Mattie's stomach has been so abused the last two weeks that we need to go slow and go small in terms of portions of food. Clearly, his stomach is not ready for regular eating behaviors even if his brain is saying he wants to eat normally. Strange thing that chemo...

So Mattie is in bed now as he is feeling tired. We are anticipating a downturn in his energy level starting this weekend as the Cisplatin (chemo drug) tends to have a 7-14 delayed effect on the body. His counts will drop, his energy level will drop and he will start feeling more miserable. Mattie will start losing all his hair by the middle/end of next week, so Mattie and I are going to see Melo, our Sicilian barber at the Watergate Barber Shop tomorrow to get a high and tight cut.

One note of clarification: I want to be clear with everyone that I started this blog as a means to disseminate information and as a form of therapy for myself, and although I write the majority of the posts, I do not work alone. As many of you know, Vicki, my better half, is the invisible hand behind much that I do and am. Vicki proof reads all that I write and regularly inserts lines herself. Like most great teams, we have no separation or preconceived plan regarding how we do things. The fact is that.... it just happens, and it is as simple as that, for those of you who know what I mean. When I am down, Vicki rises up and when she is down, I rise up instead. We never really talk about it but these qualities are something that few couples/partners ever spend time discussing or sharing for that matter. It's almost as if we have another means/medium of communication (as spooky and as whacko as that sounds). So, I want all to know that this is a collaborative effort, reflective of two people, not just one.

The positive news: so, just to preface this information, so that we all are clear the context with which we should read this information, but we do have some positive news. As the regular readers know, Mattie started chemo last Thursday. On Wednesday, six days after the chemo started, as the regular readers know, Mattie had a CT guided biopsy of his distal right femur (leg bone). We got a call from Dr. Jeff this afternoon, telling us the pathology was done and that he had the results. The bad/good news was that the area in the right leg was confirmed as an osteosarcoma tumor (which we had all suspected). But, the positive news was that the sample of cells taken were ALL dead, meaning that although there was the presence of osteosarcoma cells, the cells were all now dead after the first week of chemo. What this allows us to speculate is that the chemo has killed these cells. This also allows us to speculate that the chemo, at least at this local site, has been effective in killing the tumor cells...... Now, let's not get ahead of ourselves. This does not mean Mattie will be cured, but what this does mean is that at one site (leg), we are finding dead osteosarcoma cells only six days after chemo was administered..... so that's a good thing. Okay, now you can cautiously smile.

So let's keep our fingers crossed that more and more of these damn cancer cells continue dying. This will not impact the four surgeries that Mattie will have to undertake, but what it does imply is that we might have a fighting chance against this disease.

August 14, 2008

Thursday, August 14th, 2008

Thursday, August 14th, 2008 - Good news: Mattie is home! We arrived home today around 3:00pm and just happened to be greeted by JJ the Jack Russell Terrier. First, let me back up a bit. Last night was going well with Mattie eating a yogurt tube, chicken nuggets, ice cream, etc., until around 11:30pm he started vomiting. This was disconcerting since Mattie had been doing better than ever and we were all hoping that he would stabilize and be ready to go home on Thursday. Mattie threw up a few more times before we could get the Zofran in him, which calmed his now empty stomach. It's simply amazing that between last Thursday night and today, that this kid went through two sets of chemo drugs, recovered, countless blood drawings, a three hours long MRI under sedation and then a CT guided biopsy (think a really long needle penetrating your bone) also under sedation, and still has the energy and spirit to smile. Amazing.
So Mattie slept as soundly as one can sleep when in an intensive care unit and after the vomiting at 11:30pm, we only were woken for vitals at midnight, bathroom run at 1:30am, vitals at 4:00am and blood drawing at 5:00am. But, the vomiting stopped and Mattie was not put back on the IV, which I think was a real relief for him and an even bigger relief for Vicki and me.

We also had to change his bandage today (his central line dressing needs to be changed weekly, and today was the day), which was not a good experience. Although we got through it and Vicki did an excellent dressing change, we had to spend over an hour and a half arguing, cajoling, threatening, reasoning and pulling out every tactic in the book to get Mattie to cooperate with us. We finally succeeded in getting Mattie to go along with us and it was successful, but the emotional anguish was almost too much to bear. Mattie was just afraid and kept asking to be "knocked out" for this. It was hard to watch the fear and mistrust in his eyes and the hysterical state that he worked himself into in a short period of time. Fortunately for us, Linda was on the scene and was instrumental in facilitating the process. Many thanks Linda once again! For those of you who haven't met Linda yet, she is pictured here with Mattie.

So, we got the dressing changed, our discharge papers, we packed up the truck and we headed on home. But before we left, we hugged all our nurses. Mattie did the same! I can see these ladies are becoming like family. They see us during the best and worst of times. Mattie was happy to be home and a little more relaxed, but the old Mattie, full of life and spunk, still has not appeared yet. We have been prepared that his counts will likely drop next week and that he will get lethargic.

Meanwhile, at home, was waiting a mountain of cards and gifts for Mattie. Mattie perked up quickly and once in the door was immediately looking for the packages. He insisted on opening every single one of them this afternoon, so what were we going to say. We were once again blessed with some many wonderful things for Mattie and even Vicki, that we cannot begin to say thank you for all of this. Mattie got a iPod from his kindergarten class (KW), which is really, really cool, including a specialized holder and headphones for it. I just have to figure out how to use it and load it up with content. The inscription on the iPod says, "KW loves Mattie!" That inscription says it all and speaks volumes about the type of community we have in SSSAS. In addition to the iPod, Mattie also received an enormous balloon-a-gram today from "everyone who loves you." Peter and I suspect this is from our SSSAS friends as well. Thank you! These balloons can't help but bring a smile to our faces. Bob Weiman, Mattie's lower head of school, also sent Mattie some more magic tricks by mail today. Mattie looks forward to learning them and surprising you all with them!

Alison was also a love once again and brought us dinner from Rio Grande. Thanks Alison! Also, the Let's Dish Meals arrived today and are frosting nicely in the freezer, so many thanks to John & Jeanine, Pat & Annie, Kelly, Charon, Wasfi, Chris and Suzanna, Tom & Casie and Joe & Steph, who are all fellow Arthur Andersen co-workers of Pete.

So, we are home now. It's still so surreal for me being at the hospital for 11 days, and living our "new" life completely within the walls of the Ped ICU, getting bad news, getting little sleep and being solely focused on Mattie and his health, and then heading home, to that which was our "old" life, and one that has irrevocably been changed. The walls here are the same, the plants have grown and floor is littered with bags of things we brought home from the hospital, and although this is home, I think a little piece of us is still back at the hospital. I guess it's a feeling that we will adjust to over time, but it is one I cannot explain.

So tomorrow, Mattie and I are going for haircuts that this time will be a lot shorter. Mattie's hair should start falling out within the next two weeks so to minimize the quantity of lost hair we are going short in length. Also, Deb Pollak, Mattie's Art Teacher from SSSAS is scheduled to come over in the afternoon and do art with Mattie. Mattie was scheduled to do a summer camp with Ms. Pollak, but was diagnosed with cancer before the camp started. Deb has been following Mattie's story now for weeks, and knows how art brings a smile to Mattie's face. Also, between 4 and5 pm a nurse from OptionCare, a medical supply and nursing outfit, will be here to walk us through the box of medical supplies that arrived today as well as the procedures for keeping Mattie's "Sparky" clean.

August 13, 2008

Wednesday, August 13th, 2008

Wednesday, August 13th, 2008 - Today was a good day. In spite of Mattie having a 7:00am biopsy that required sedation once again, he was a champ. With the help of a little Versed administered in the room, and then a "cool ride" down to the CT Center, and then Propofol, Mattie went through the CT guided biopsy with contrast in about an hour or so, completely unconscious. We retrieved Mattie in Phase 1 Recovery where he had been administered Morphine, and was in decent spirits. On hand to perform Mattie's biopsy were Dr. Allison Lax (a truly compassionate radiologist, who personally visited with us twice today to see how Mattie was doing!) and Dr. James Jelinek (who works very closely with Dr. Bob at Washington Hospital Center). The Team decided just to biopsy Mattie's distal right femur (just above the knee after conferring with Dr. Bob Henshaw) since the MRI imaging from yesterday convinced the team that the other two sites on the left arm were indeed Osteosarcoma. We should have the pathology results by friday or monday morning, but everyone seems confident that the results will also be Osteosarcoma. The irony is that through a PET, Bone Scan, and MRI something of question showed up on the right femur, but this same area did not appear on the x-rays or CT scans. Which makes this particular area rather suspect and in need of further exploration, which is one of the reasons this leg was chosen today for a biopsy. Mattie's knee was both swollen and bandaged, but he was feeling good most of the day.

Once Mattie recovered later in the morning, Mattie had some visitors. First, there was Junko Funahashi, mother of Kazu Ferris, an SSSAS buddy. Junko brought Mattie some gifts to pass the time of day and much to my delight, a Red Sox game hat that they purchased while seeing a game at Fenway this summer. We also thank the Ferris family for their very generous gift of meals and groceries. Junko's mom also assembled 60 origami cranes and tied them together beautifully to create a "praying crane" hanging mobile. You can see this colorful display in the picture on the left below (right near Scooby's nose!).

Next, Mattie had a surprise visitor, who was very tall, furry, wore a collar and had a slight speech impediment: you guessed it.... Scooby! Though Mattie was happy to meet Scooby he was convinced that Scooby was really being played by Dr. Myers. One of the oncology doctors in Mattie's practice. Mattie even questioned Dr. Myers about this later on in the day, Mattie was convinced that Scooby had to be played by Dr. Myers because the doctor and the visiting Scooby were the same height. Trust me, it was hysterical!

Next, Elizabeth Sterba and her mom Anne, paid Mattie a visit. At that point, Mattie wanted to get out of the room, so Linda requisitioned a wheelchair, and off the team went around the unit. Mattie quickly started mastering the wheelchair and was already powering it on his own.

Mattie was joined by Anna Fragomeni, the resident Physical Therapist, who performed an evalution on him while Elizabeth and Mattie played ball and drew a chalk picture that was then taped to his hospital room door. Once again, Mattie was acting like a typical six year-old this afternoon, which made us very happy.

Deb Berry then stopped by to drop off dinner for us as well as two "find Scooby" books (similar to the "Find Waldo" books). Many thanks Deb for dinner! Also, Amany Aridi (a close family friend) stopped by and brought us some tasty treats and ice cream and stayed to chat for some time with us.

So, the bigger news is that we are going home tomorrow (Thursday), and that Mattie will not have to come to the clinic to check his blood levels until Monday. Vicki and I have been trained and were practicing today (and will actually perform) the dressing changing, flushing and cleaning activities that Mattie's central line (nicknamed "Sparky") will require each day. For example, every day that he is not receiving an IV or in clinic, Vicki or I have to push 10mLs of saline through his lines and then push 3mLs of Heparin (and fast acting anti-coagulent) to make sure both of the lines stay open. Also, we are coordinating with a home medical supplier to deliver the required materials to our home so that we have the appropriate supplies to do this. Let me say this, pushing fluids into tubes extending from your child's chest that dump directly into a major artery just before his heart, is a little scary to say the least. But like many things in the last three weeks, we just have to accept and embrace this as well. We thank Erin (one of Mattie's nurses) for her patience today in training us. She is a marvelous teacher! As Vicki says to all the oncology nurses, "if we have to be going through this, she can't think of a better group of people to go through it with."

This is Week 2 of the five week chemo cycle, and is supposed to be an "off week" for Mattie (ha ha!!). Mattie will go to clinic on Monday and Thursday next week, as well as Monday (the 25th) of the following week, and then on Thursday the 28th, Mattie will be admitted to the PICU again for his first dose of Methotrexate, which will take several days to complete (between administration and level balancing). Mattie will then go home for a few days, and then come back to the hospital on the following Thrusday (Sep. 4th) for his second dose of Methotraxate, and then that will complete one cycle. The next Thursday (Sep.11th), Mattie will start back at the beginning of his chemo cycle.

So we will try to make this weekend a normal one for Mattie. Mattie's energy level and counts are expected to drop some time next week as the chemo's effects continue to impact Mattie's body. We will keep up the regimen of thrice daily antibiotic lozengers, four times daily mouth washes, and will add in thrice daily Bactrim doses next week, all in an effort to prevent infections. So, we'll see how tomorrow goes as we spend our first night back at home in 11 days.

Before we end tonight, Vicki wanted to say a special thank you to Resurrection Children's Center (RCC). Vicki received an e-mail today from Kim Messinger, the school's director (Vicki found the e-mail so touching that she landed up crying). Kim and the entire RCC community are deeply concerned about us, and want to find a way to ease the isolation that this year may present us with. Vicki will work with Kim on coming up with something feasible for Mattie, but once again RCC has entered our life in a time where we really need support and compassion. We are the living proof that RCC truly embodies and embraces its mission of inclusion of all children!

August 12, 2008

Tuesday, August 12th, 2008

Tuesday, August 12th, 2008 - Today was a decent day inspite of Mattie not having any food/drink until tonight and a 3 hour long MRI for which he was sedated. Mattie spent the morning (surprisingly) not focused on food, but rather on playing with Linda and the other Child Life volunteers and intern in the unit. This activitiy occupied most of the morning, which helped Matt keep his mind on other things.

Also, this morning, Dr. Matt Biel had a psycho-education session with Mattie along with support from Linda regarding Mattie's body and the soldier cells. Dr. Matt explained to Mattie that in his body he had lots of soldier cells that kill bugs, and he explained to Mattie that each soldier cell needed two things that Mattie had to supply the solider cells with to survive: food and weapons. Mattie quickly understood that if he ate food that he was delivering food to the solider cells, and that the medicines were the solider cells' weapons to the kill the bugs. The session was very helpful for Mattie and included a model of the mouth, esophogus and stomach that was made by Jenny and Jessie (the art therapists) down in the clinic. The model was a great teaching tool and really helped Mattie process things.

Also, thanks to Linda, we had a impromptu meeting with the in-patient Pediatric Physical Therapist, Anna, who is setting up a PT assessment of Mattie before we are released to go home. Based on the insights and observations from our PT RCC support team (Katie and Kristin), we are trying to be proactive on this front for Mattie.

Just after the lunch hour, Mattie was given Versed and then we carted him down to the MRI unit, where he was given Propofol, which knocked him out for several hours. The MRI was done to get better imaging of the left arm (in two places) and the right leg. This MRI was done with contrast that is injected during the procedure to provide better imaging resolution. However, when we arrived for the appointment, Mattie's intensivist told Vicki that the procedure was scheduled to take four hours. However, she cautioned us about this, saying that Mattie really shouldn't be sedated for more than 3 or 3 1/2 hours at the most with propofol for safety reasons. All Vicki needed to hear! So at which point, Vicki went into action, and wasn't moving forward until we got confirmation that the MRI wouldn't take more than three hours, and she said if it was going to be more than three hours, she wasn't going to consent to the procedure. Needless to say, it was three hours on the dot and the intensivist (Dr. Aruna Natarajan) was fantastic!

During this time, Vicki and I got some light lunch items and sat on top of the Leavy Center roof in the sun. We were joined by Rob Frye, a good friend, who rode his bike over from the office and who joined me on a walk around the Gerogetwon Campus. Both Rob (due to ROTC) and Pete (due to business school) have spent significant time on Campus, so it was good to take a walk in the sunshine and outside. While I was walking about, Vicki spent time with Lorraine, a dear family friend chatting in Mattie's room.

Mattie recovered around 5pm and was carted back up to his room, where he spent the next two hours or so coming out of sedation. Mattie is always very disoriented with slurred speech and blurred vision in addition to dizziness, so the recovery process is always very disconcerting.

We had a number of visitors today as well including Lorraine Kleinwaks who brought some tasty treats for Mattie (the pizza was a hit right after the MRI, Mattie had an entire piece while hiding under a blanket). Also, Van Brathwaite and Bonnie Rampersaud, Assistant Attorney General and CEO respectively from the DC Counselor Licensure Board (of which Vicki is the chair) also paid a visit and brought some things for both of us and Mattie (we loved the cards and Veggie Tales and the puppy were a big hit tonight). In addition to Rob Frye's visit mentioned above, we also had several people from Pete's office pay a visit. Amy Saxton, Melissa Torres, Can Ozturk and Vidit Mittal came over to deliver some delicious cupcakes as well as some things for Mattie (we loved the cards). Also, Srinivas and Artie Varanasi (Srinivas also works at Voxiva) paid a visit as well, and brought us some homemade Indian food as well as some things for Mattie. Last but definitely not least, many thanks to Lana Sonoda and her daughter Erin who paid us a visit, and brought a tasty vanilla shake for Mattie (which is GONE now) and also brought us some incredible dinner. We are blessed to have so many wonderful friends in our lives!

August 11, 2008

Monday, August 11th, 2008

Monday, August 11th, 2008 - Well, it is with a better feeling that I start writing the post tonight knowing that Mattie had a good day. Mattie had a decent night last night as he managed to eat some more mac-n-cheese late last night, and slept fairly soundly (as soundly as one can sleep in a hospital) through the night. Although he awoke early this morning with no appetite and not eating or drinking and some sporadic wretching, we worked with him this morning to get small sips of milk down his throat. After several hours of verbal and physical abuse (of Pete and Vicki), we had succeeded in getting an ounce of milk in Mattie's belly.

However, things started taking a turn for the better when Linda, the ChildLife Specialist showed up this morning to say hi and to ask if Mattie wanted to play. Mattie first refused the invitation to come out to the hallway to play, but soon thereafter made up his mind that "I want to walk," and headed out the door, IV pole in tow, in search of Linda. Mattie spent an hour or so with Linda, playing all sorts of games while Pete and Vicki met with the Clinical Psychiatrist, Dr. Matthew Biel about Mattie's situation. We had a very good session with Dr. Biel and we laid down some preliminary plans/strategies for helping Mattie (and us) during this time in his life. Mattie then returned to the room tired, but a little hungry. So, we got some mac-n-cheese down his throat and few more ounces of milk while Mattie sprawled out on the bed.

Linda had coordinated with Jenny and Jessie, the two art therapists downstairs at the clinic, for Mattie to head downstairs and spend some time playing. So we trudged down to the clinic and Mattie got into things immeidately and quickly forgot about his situation.
He met up with a SSSAS buddy, Lily Phillips, who had shown up with her mom Cecile Phillips, and the two had a ball playing and being six year-olds.

I think the smaller group play with his buddies is really beneficial as it is a less intiminating experience for Mattie.

Mattie was also visited by John Putnam (an RCC buddy) and his mom Grace Putnam, and the two had a great time again, being silly six year-olds and forgetting about the tubes and things for a while. Julie Frye also stopped by and spent time playing with Mattie and building a ferris wheel, as did Kathie Stoltzfus, Mattie's former Occupational Therapist (OT) (Thanks Kathie for the delicious cookies and the tea!). Katie Parker also stopped by to say hi as well. Katie is a former RCC mom who also happens to be a Pediatric PT, who offerred her support and connections at Children's when the time comes for Mattie to undergo his surgeries (Thanks Katie for gifts, the glow in the dark bracelets are a hit tonight!).

Alison McSlarrow was an angel yet again today and came over with supplies, some gifts for Mattie and lunch from Rio Grande, which I quickly devoured. Nothing like cheese, bread, sour cream, chips, fajitas and salsa to comfort the head and stomach. Also, many thanks to Liz Morris, Lois Brown, Katey Henig, Julie and Alex Frye (Thanks for dinner and treats!!!), the Grace and John Putnam, Kathie Stoltzfus, and Senora Johnson (Mattie's spanish teacher from SSSAS) for their kind gifts today!

We also got to meet Julie Andrews. No, not the stage/screen actress, but just an equally lovely lady. Julie is the Assistant Vice President of Patient and Physician Advocacy and International Services, which means she makes sure that each patient has as good an experience as possible while at Georgetown University Hospital. Julie was very charming and reassuring and offerred her help. We can thank Alison for making this connection for us!

Tomorrow Mattie has a MRI (with sedation) some time in the morning. The team here is doing their best to juggle schedules so that Mattie can have the MRI as early as possible during the day (maybe as early as 1:00pm). Mattie will be in the MRI for over two hours and will be sedated (i.e. knocked out) for the entire time. He'll be given Versed before he wakes up since this seems to lessen the negative side-effects as he comes out of the Propofol. We'll spend the night at the hospital again (night #9) as he will have an early morning biopsy on Wednesday morning.

So, today was a good day. It's strange to stop and think about that simple line: today was a good day, but this simple, five word statement epitomizes our life at this point: one day at a time. Although we have heard stories of people who in the face of great challenges, talk about living their life one day at a time, I am now overwhelmed by the magnitude and depth of what that actually means. So, here is to tomorrow and the prospects of it being another good day.

August 10, 2008

Sunday, August 10th, 2008

Sunday, August 10th, 2008 - Mattie officially finished up the drug regimen portion of his first week of chemo last night around 9:30pm. So the balance of last night's and today's activities were focused on making him as comfortable as possible and on reducing the amount of nausea and emesis. Mattie spent the evening and today fighting off nausea and emesis, which made him lethargic and miserable. We thought we had a small victory tonight when Mattie was hungry and requested Mac 'n cheese of which he ate a half serving (not bad for a six year old who had gone through chemo and not eaten or drunk anything in three days). But, the victory was erased after an hour when we were trying to get an oral stool softener and his Nystatin (an anti biotic that coats the throat to prevent thrush, a fungal infection of the throat) down, and Mattie vomitted up both the medication he had just taken and the food.

This episode left me and Vicki with a lot of frustration and depression since we had worked so hard to get Mattie to eat and drink again only to have it erased by another element of the treatment regimen. I'd say it was ironic that one aspect of the cure actually undid the progress that another aspect was making, but then that would add only negative thoughts to an already grim situation.

We're giving Mattie Zofran (anti-nausea) again tonight in the hopes this finally helps surpress the nausea so that we can give him more food at some point, and with the hope that we can stabilize him by tomorrow so that we have the option to go home if we like. Frankly, given that the MRI is on Tuesday at 1pm and his biopsies are wednesday at 7am and that we will have to be at Main Registration by 5am, I think we will likely stay in the hospital, but we do not know for sure.

The toll is making its mark on Mattie. Last week, Mattie asked whether children can die. Today he said to me that he wanted to die, which is not something Mattie has ever said before to me or Vicki. Although this was said in the context of him having gone through chemo and being nauseous for several days, I was still surprised, shocked, and devastated to have my six year-old, picture of perfect health now dealing with cancer, saying this to me. It crushed me and I had to stop myself from thinking about it. In the past, when Mattie has asked what happened to someone who was no longer with us (Great Grandmas and Granddads for example), we have told him the truth that some people get sick and die and based on our religious beliefs are joined with God in heaven.

After he said he wanted to die, I did my best to catch myself and responded to him quickly as if he had just made a ludicrious statement, but neither Vicki nor I have ever addressed this issue with him. However, Mattie is a smart kid and sufficiently perceptive on some level to understand that he is really sick. Vicki did talk with him and helped him verbalize why he thought he was dying and that he may feel this way now because the medicines have made him sick, but that this feeling will be temporary but yet necessary to get the "bugs" out.

Mattie also said today that he was ugly, which also crushed Vicki and me. I think Mattie is clearly observing and sensing that he looks and behaves differently, and believes he is being treated that way. Mattie has a huge triple pump IV pole connected and next to him at all times; he has dangling tubes connecting him and his chest; he is wearing a hospital gown and not normal clothes, and most importantly, he cannot do what his friends can do and therefore feels self-conscious and overwhelmed. I am no mental health professional, and perhaps my conclusions are wrong, but I don't think so. The implications of this will continue to unfold but one thing is for sure, Mattie will be more isolated while he is battling this disease in part because he will be out of school, but also because of the treatments and the surgeries, each of which will be significant with many, many months of physical therapy, will mean more isolation and situations where he knows others will point out that he is different. So, we'll have to come to grips with how to address this at some point.

We had a bunch of visitors again today. Kim Messinger, Director of Resurrection Children's Center, came by today to say hi to Mattie (who was in one of his "icky" states) and to give us some pictures of Mattie several years ago at RCC. Also, Mattie had a group of RCC buddies show up as well this afternoon including: Kate, Eric and Jaimie along with their parents Dave and Julia Lee; Sam, Maddie and Ryan and their parents Ashley and Bob Glennon, as well as Bob's parents "Mima and Pipa" Glennon (fellow Bostonians and Sox fans). Thanks Lana for the special gift bag, thanks to the Glennon Family for the great pirate book and thanks to the Lees for the breakfast materials.

Additionally, Mattie got a visit from Nikki Biers (a SSSAS buddy) and her brother Lucas and parents Frank and Viki, and Campbell Cooper (a SSSAS buddy) and his mom Christine. Thanks for the Indiana Jones DS cartridge and thanks to Christine for the Scooby-themed items for Mattie, dinner and the special things for us.

We also got a visit from an RCC buddy Sara Catherine Canterbury along with her brother Garret and her mom and dad Catherine and Brian. Thanks Catherine and Brian for all the useful and thoughtful things to continue making this a little easier. Vicki, loves the cookies! Last, Anand Narasimhan, his wife Ella and daughter Daia also paid a visit last night and gave Mattie some things which was very thoughtful. Anand is the Chief Technology Officer at Voxiva, Pete's company, and is moving to Israel in a few weeks to be closer to Ella's mother who is not doing well either. So in summary, Mattie had a very busy social day.

I go to bed with a racing mind fatigued by several weeks of sleepless nights, life-altering revelations by day and racked by a complete loss of my sense of time or day (something that I live by precisely). Both Vicki and I understand that it will be five or more weeks before we have any early indications that the chemo is having an effect on the tumor growth. A metric that we will be watching is the alkaline phosphotase level in the blood. The Alkaline-phosphotase enzyme is an indicator of bone cell activity. In Mattie the level is 3-4 times higher than normal for a child his age (Mattie's is around the 600 to 700 range), who by the way have a lot of bone growth occurring. Although the level is expected to rise slightly with the administration of the chemo, we ideally want to see Mattie's number level-off and stop climbing, and ideally see it start falling as this could be an indication that the bad bone cells are dying-off.

In addition to our hope that the chemo works, the thought of all the surgeries, bone replacements, artificial prostheses, loss of function and physical therapy is overwhelming and almost too much to think about at once. I have to push myself to think about it, which is its own separate torture given all that we have gone through and all that we are dealing with at this point. All we can do is get the best care available, make Mattie as comfortable as possible, and allow our family and friends to surround us in love and support. So thank you everyone for all that you do as it does make a difference to us.