MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 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: www.mattiemiracle.com 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

March 6, 2009

Friday, March 6, 2009

Friday, March 6, 2009

Quote of the day: “In times of great stress or adversity, it's always best to keep busy, to plow your anger and your energy into something positive." ~ Lee Iacocca

Peter took over last night because I was just too tired and my migraine headache prevented me from waking up multiple times. I could hear Peter, Mattie, and Ellen (our wonderful HEM/ONC nurse) moving around last night, but there was no way I could respond. So Peter was up and down many hours throughout the night with Mattie. Mattie tolerated the chemo very well, and woke up this morning feeling fine. Fortunately!

When Mattie woke up today his initial thoughts were of the playroom. He wanted to know if he could go to the playroom and he wanted to find Linda. I knew Linda was going to have her hands full because she was hosting a ribbon cutting ceremony for the playroom, so I went out to assess the situation to level set Mattie's expectations. The playroom was closed this morning for good reason, because the room was being prepared for the big event. Fortunately Linda sent volunteers to Mattie's room all morning to come help entertain him. Mattie began the morning with Tony, a volunteer. They did a 300 piece puzzle together that I brought from home. They were quiet together, but none the less worked well with each other. While Tony was in the room, Laura, one of Linda's interns, came down to work with both Mattie and Tony. At which point I bounced back and forth to do laundry. I think I have done more laundry this year than in my entire lifetime. When I got back to the room, Kathleen, Mattie's nurse, was in there with them. Kathleen and Mattie get along beautifully. Kathleen knows how to hold her own with Mattie, how to appropriately joke around and encourage him. Kathleen is an excellent and competent nurse, and today I had a chance to see her fun loving side. I think you should also know that Kathleen attended the music fundraising event that Tyler Gehr's and other SSSAS high schoolers hosted in Alexandria. Kathleen certainly did not have to go, but I think her actions speak volumes about her commitment to Mattie.

After Mattie put the 300 piece puzzle together, he then decided to act like a tornado and destroy and break apart the puzzle. His hands were the tornado. Apparently Kathleen and I were asked to pretend to live within the puzzle, and Mattie was looking for a reaction from us as our homes were getting blown away by his tornado hands. Kathleen was hamming it up and Mattie was loving it! I snapped two pictures of Mattie and Kathleen together!

Left: This picture of Mattie and Kathleen was taken outside the playroom right before the ribbon cutting ceremony. Kathleen understood that Mattie was very excited about cutting the ribbon, and she wanted to support Mattie and therefore came to watch the event!









Right: Kathleen and Mattie playing a tornado game with all his puzzle pieces!





Mattie played with two other volunteers today, and he started designing another cardboard box structure. He won't tell me what it is yet, but he was chatting up a storm. In between all these activities, Liza May came to visit us. Liza is an upper school mom at SSSAS and now a friend. Liza brought me a wonderful lunch which was comprised of homemade zucchini soup and a wonderful salad. Liza, please consider adding your soup recipes to Mattie's cookbook. Liza also packed a very creative lunch for Mattie. She included all sorts of snacks, spiderman mac and cheese (with a spiderman activity book and stickers), and homemade pumpkin muffins. The muffins were a major hit. Mattie is back on a pumpkin kick! Thank you Liza for supporting us today, and sharing your cooking skills with us.

Mattie was literally counting down the minutes until he could go to the playroom for the ribbon cutting ceremony. Kathleen was teaching Mattie how to tell time and track the time himself until the event. Mattie understood the concept of a ribbon cutting ceremony because he participated in such a ceremony last year at SSSAS. The kindergarten classes created a garden at the school, and there was a special ceremony to acknowledge this contribution. On an aside, I always regret that I never got to see this garden. Mattie always wanted to show it to me, but one thing led to another and I never got to see it. Funny isn't it? I wouldn't be making this mistake now if given such an opportunity. The things you have to learn! Any case, Meg, Linda's intern, came to Mattie's room today and helped us to the playroom. Mattie waited by the door with anticipation. I snapped some pictures of the whole event. To Mattie this was a big deal. Though the playroom is Linda's baby and creation, Mattie takes a lot of pride in the playroom. Linda did a beautiful job hosting the event, and it ran smoothly and was very festive. For those of you who haven't met Linda, you probably can get the feeling for who she is from reading this blog. She is an amazing lady and we are so grateful to have her in our life.

Left: I thought this picture was very sweet. Mattie and his buddy, Linda were having a chat minutes before the ribbon cutting ceremony. You need to understand that Linda was running this event, and despite having a thousand things to do, she made the time to chat with Mattie and make him feel special.


Right: Mattie with Linda, several hospital administrators, the president of the Starlight Foundation for the MidAtlantic region, and a representative from Toys R Us (the two co-sponsors of the playroom).















Left: Mattie had the opportunity to meet Geoffrey, the Toys R Us mascot. They gave each other a high five!



Right: Linda snapped a picture of Mattie and I at the party, we were right in front of the fantastic cake. The cake had NO chocolate in it. Mattie was thrilled!






As the party was taking place, Peter arrived. Peter came to the hospital today, because he and I made an appointment to speak with Julie Andrews. Julie is a Vice President at Georgetown and the head of patient advocacy. We wanted to go on the record with some of our concerns. It was a very productive meeting and Julie assured us if we write a letter to Dr. Draso (the CEO at Georgetown Hospital), that she will personally make sure the CEO receives it and will strongly encourage the CEO to respond to it. So Peter and I are compelled to write a passionate and well documented letter. This could all be for naught, but we feel that the HEM/ONC practice at Georgetown deserves the opportunity to be represented from the side of the consumer.

When Peter and I arrived back at the PICU, Mattie had just finished playing with Linda and had moved onto physical therapy with Anna. Anna got Mattie up and walking. Meg, Linda's intern, was instrumental today in the therapy session. Basically Mattie and Meg decided to have a race around the floor. Not just once, but TWICE. This is a ton of walking for Mattie, but he was motivated. Linda was the race commentator, I was the person who sat at the start and finish line to blow the horn indicating the start and finish of the race. It was a riot to watch this. Meg really got into her role, and she pretended several times to be caught in quick sand, so that Mattie would be the natural winner of each race. Which only motivated him to do a second lap! Excellent. Peter and Denise, Mattie's social worker, also got involved! I tried to capture the excitement of the walking session on camera.

Left: Mattie and Meg at the starting line of the race. They were both determined that they could beat one another.

Right: The whole racing gang! From left to right, is Anna, Peter in the background, Denise, Meg, Mattie and Linda







After Mattie's exciting physical therapy session, we headed back to his room and he had a special visitor. Susan DeLaurentis, the director of school counseling at SSSAS, came to visit Mattie. She brought a wonderfully creative card from Ms. Flanigan's first grade classroom. It was a card with different bugs on it. A card right up Mattie's alley. The bug card now is posted on Mattie's hospital door. I took a picture of it for you to enjoy how special it is for a bug lover.

In addition, Susan brought a wonderful book from SSSAS' book fair. It is a book about bugs. Mattie was able to identify many of the bugs on the card that matched bugs in the book! Susan also brought a wonderful highlights activity book, which Mattie jumped into and started completing. Mattie also loves the travel size Hoppers game. Mattie recently received the Hoppers game from a friend, and he loves it. He can play it independently and having the travel size version will be great to take to the hospital. Thank you Susan for all the great gifts. You know what is up Mattie's alley. I also appreciate the visit and support.
We want to thank Beth Engiles for the wonderful home cooked dinner. We loved your crabcakes and shrimp, and the aspargus was a special treat! Mattie loved your pumpkin bread as well! Thank you Beth for your continued support and for your visit tonight.

As I write this blog I am home tonight. Though I know Peter is very tired too, I can't function at this point. I need rest and I need sleep in order to get rid of this migraine headache. As the days continue on I realize I am getting weaker and without a break, I can't continue at this pace. I am sure Peter is not far behind. I am hoping a day away will give me the energy I need to continue on because this is a fight of a lifetime not just for a year. Mattie will get his second dosage of doxorubicin and cisplatin tonight. It is my hope that he will tolerate it well. The plan is that he will have 24 hours of post-chemo hydration on saturday and then be allowed home on sunday. Of course, by tuesday or wednesday I am being prepared for Mattie to become neutropenic. I am not sure Peter and I can handle another 11 days of a neutropenia admission. One thing is for certain, Mattie is coming back like gang busters, and Peter and I are dwindling. It is hard to manage his HIGH energy, and I think without being able to physically expend his energy, it is bouncing out of him in so many other directions.

I end tonight's blog with a message I received from my friend, Charlie. Charlie wrote,"If anyone is an example of turning frustration into something positive it is you. The medical community as a whole needs a real wake up call for their part in keeping patients from getting well. Many physicians don't realize that their staff is a reflection of themselves; we judge them by how the people they hired treat us. I am truly sorry for what you experienced with your doctor's staff yesterday, as you said there is a wide divide between hearing someone and truly listening. The former is done with the ears and the latter with the heart. When someone who is supposed to be listening refuses to acknowledge what you are saying it is incredibly aggravating. Add pain into the mix and it can get explosive. I am glad you finally got to the doctor and were able to make yourself heard. I am amazed that the situation with admissions to Georgetown are still a problem. Unfortunately, you have run into a not so positive side of human nature; when no one is pushing, things tend to return to the status quo because that takes less thought and effort on the part of the person who is directing. I hope that since your patient advocate saw what was going on your next admission will be smoother. It is absurd to fill out the same forms over and over again within a very short period of time. I hope that some of the barriers to good patient care you have identified to the hospital administration are resolved and that better solutions take root in a lasting way."

March 5, 2009

Thursday, March 5, 2009

Thursday, March 5, 2009


Quote of the day: "Resilient children tend to have parents who are concerned with their children's education, who participate in that education, who direct their children's everyday tasks, and who are aware of their children's interests and goals. Another important characteristic of resilient children is having at least one significant adult in their lives." ~ Linda F. Winfield


I woke up this morning determined to contact my neurologist. My migraines are becoming so intense that it is becoming harder to function. I have suffered with migraine headaches for years now, they come and go, but once they start, they are hard to get rid of. I have learned to work through them, but it is painful. When I saw Alison this week, she suggested I contact my doctor and tell her of my extenuating circumstances. So while Mattie was sleeping this morning, I was racing around packing and on the phone at the same time. I feel the need to tell you this story because I think it speaks volumes about healthcare. So I call the neurologist's office and a staff member answers the phone and quickly puts me on hold. But I was not on hold for a minute or two, try 10 minutes. My phone has a time counter, so I knew for sure. Now if holding on the phone wasn't bad enough, there was this noxious music I had to listen to. In fact, it reminded me of circus music, and it just played over and over again. When the staff member got back on the phone, I told her I couldn't be the only person who couldn't stand hearing this music especially with a headache. So what did she do to me? She put me right back on hold again! At this point, Mattie woke up, and was sitting down right next to me listening and watching the whole process. Mattie did not care for the holding music either. When the staff member came back on the line, I removed myself from Mattie and then told her about my migraines and my circumstances with Mattie. She did not ask how Mattie was doing nor did she say she was sorry to hear this news, but instead she moved onto quoting me office policy, which was that I needed an exam before getting a prescription renewal. I told her I understood her policy, but that I wanted to talk with the doctor, in hopes that the doctor would understand the circumstances. But she wouldn't leave a message for me, just kept quoting policy. So between waiting 15 minutes to talk to a live person and then being quoted office policy, I lost it. I then moved up to her manager. Who was an equally frustrating individual! Neither staff member showed any concern for Mattie or what my family was going through. In fact after I told the manager Mattie had cancer, she then asked me why I was having headaches? Did I have stress in my life? Are you KIDDING ME? Wow! I know their ears were working, but perhaps not their hearts. At Georgetown, I can get angry and upset, but I try to be professional. I have never started screaming per se. But I can tell you on the phone today, I must have sounded unstable. I was yelling and completely snappy. Needless to say two minutes later the doctor called me back and did accomodate me with migraine medicine. I told her that her staff was unprofessional and insensitive, and frankly the whole experience makes me rethink coming back to her office. Have we come so far as a society and are so busy that we can't truly listen when someone is telling you they are in pain? I don't know, but today was another illustration of healthcare at its worst.

Mattie complied with getting dressed this morning and fed himself breakfast. I finished packing up and then we were on our way to the hospital. We literally got the last parking spot in the garage today, parking is quite a frustrating experience at Georgetown and then factor in a wheelchair, and this is the icing on the cake. We arrived at the clinic around 11:45am. Mattie met up with Jessie and Jenny, and he jumped right into creating. Mattie complied with taking his vitals and blood draws. Mattie's cardboard box creations however were all over the clinic today, and let me tell you there are A LOT of boxes. Linda had a storage closet that she was storing these boxes, but another group took over the closet and with that, Mattie's boxes lost their home. So now we have to find a space for them. Ann has offered to store them in her basement, and Peter says we really should take pictures of them and only save a few. So we will need to break this to Mattie. None the less, the boxes really are living proof of how busy Mattie has been this year creativity wise! Though I could throw out the boxes, they mean something to me, they capture a more whimsical and lighter moment or mood in Mattie's days at the hospital. Or maybe because they capture Mattie's spirit. Yes, I know, this is why I am considered a pack rat.


Mattie took out his Christmas box that he made in December and wanted to play with it today. While he was playing, a group of United Airlines personnel came by to give all the children teddy bears. Mattie took a picture with these lovely individuals, and they wanted to know about Mattie's box, particularly if Christmas can be celebrated everyday within this house. His response was yes and that gifts arrive each day too within the house!



After this visit, Mattie met with Dr. Toretsky for an examination. Mattie did very well through the exam, and even was entertained by Dr. Toretsky's trick light up thumb. When we left the exam room, Ann came to visit us. She brought me a wonderful lunch, hot tea, and a lot of goodies for Mattie and I. Ann spent a good amount of time with Mattie and Jenny today, and they all played with the Christmas house and there was a good Santa and bad Santa. It was a riot to listen to! Thank you Ann for supporting us and for everything you do for us each and every day! My family loves you.


While I was eating lunch, Ann and I looked at each other, and came to the same conclusion. What was next for Mattie? In essence we were waiting around, but nothing was happening. So I found Denise, our social worker and she helped me track down a nurse, and I found out the hold up was with admissions. No one from the clinic could help me with the process today. So again, I had to leave the clinic and wait in the admissions office to register Mattie into the hospital. This whole process is absolutely crazy! Why? Because today was Mattie's 50th admission to Georgetown's hospital since August. Fifty times! Goodness gracious, you think they would know us by now. Why must we go through this administrative waste of time with each admission? While I was sitting in the admissions waiting lounge, Gail Chisholm, my patient advocate, found me there. She was stunned I was there, because she thought the process had been streamlined for us. Needless to say, I admitted Mattie and then headed back to the clinic.

Today in clinic we got to see Teresa and Maria (her mom). Teresa is an osteosarcoma survivor, and Maria has been a wonderful support to us. It is hard to believe that Teresa was ever sick, since she looks like the picture of health now. It gives you hope! I can't thank Jenny, Jessie, and Ann for engaging Mattie today. Jenny helped me upstairs with Mattie and she spent several hours with us. Jenny worked with Mattie on a wonderful painting of racecars. I snapped a picture of it so you could see it. Mattie created a whole story about the racecars and how they could escape underground if they needed to for protection. Mattie loved his "Jenny time" as he referred to it today, and it was great to see Mattie animated, blowing up balloons, and talking up a storm with Jenny and the nurses.



Mattie had a chance to go to the playroom today with Jenny. While in the playroom he met up with Laurie, a volunteer that has connected with Mattie. Mattie had fun painting and putting clay through a pasta maker. However, Mattie needed to come back to the room for the administration of MTP-PE, which fortunately went well today. While Mattie was in his room getting MTP-PE, Mary Dressendorfer, the director of technology at Mattie's school, came to work with Mattie on the computer. Mary has introduced us to a wonderful world of educational websites. I had the pleasure of an hour to myself while Mary worked with Mattie. When I got back, Mattie did not want Mary to leave, so I got to observe him interacting with the computer and attempting to read. It was great to see. Mattie was also eating up a storm while he was with Mary. On an aside, I am happy to report that Mattie has gained weight this week. He is looking better, just in time for the next round of chemo! We can't thank Mary enough for her time, energy, expertise, and love that she shows Mattie. I told Mary that she is like a ray of sunshine when she enters a room!

As we headed into the evening, Mattie was getting edgy. He mood instantly changed when Linda, Jenny, Jessie, and all the volunteers left the hospital. He desperately wanted to go to the playroom at 6:30pm, but it was closed. He was so disappointed and was so upset with me that I couldn't access the room and get him materials. Thankfully, Peter got off of work, and showed up 30 minutes after this funk began. Peter carted all our things up to the room (no easy feat!) and together we started organizing the room. Prior to Peter's arrival, I secured a cot and made the bed so I wouldn't have to do that tonight! Fortunately Peter brought a video for Mattie to see, and this distracted him for a bit, but it is 10:30pm and he is still in a funk. So much so, that I picked up my computer and walked out of the room. I can take just so much abuse, and disciplining Mattie constantly gets tiring quickly.

At 10pm, Mattie's chemo infusion began. Mattie will be getting doxorubicin first. This chemo is bright red. Peter took a picture of it tonight so you could appreciate how toxic it looks!


Doxorubicin is infused over a 30 minute time period along with mannitol (which protects the bladder). After this infusion, mannitol continues to infuse for another two hours. Then at which point, Cisplatin (clear in color) is administered. Cisplatin infuses over a 4 hour period. This whole process is then repeated tomorrow night at the same time. So we shall see what our night holds for us.

We want to thank the Nashman family for a wonderful Italian feast tonight. Dinner was incredible and very generous! Thank you Honey! The restaurant also brought balloons for Mattie, which made his day. They add a lot of life to his room. We so appreciate your thoughtfulness and support.

As we head into tomorrow, the childlife playroom is being officially opened with a ribbon cutting ceremony for its sponsors. Linda has asked whether Mattie would like to help cut the ribbon since the playroom means so much to him. Mattie is excited about this, and I hope he feels well enough to participate.


I end tonight with two messages I received today. The first one is from my friend, Charlie. Charlie wrote, "I was hoping that the second day at home would be as "pleasant" as the one before but unfortunately, it did not happen that way. I am sure you are frustrated with Mattie's refusal to take medicine to make himself feel better but compliance isn't his way. In fact, I think his stubbornness is part of his essential being and that as long as he demonstrates that, the "real" Mattie, is in there and fighting the disease. I can see Mattie's resiliency and his ability to deal with things in the long run, however as we know, what he is going through is exhausting for everyone in the family and causes frequent meltdowns. I suspect it will be that way on and off until all the therapy is completed. So many thanks to all who continue to rearrange their schedules and offer support like Whitney, Ann, and others. Whatever connections can be maintained are worth their weight in gold."

The second message is from my mental health colleague and friend, Susan H. Susan wrote, "Hmmm, I have to take issue with something in Wednesday's blog. I truly believe that Mattie IS a student and you ARE an educator, just different formats than what is considered normal, routine, and "semester-like." Mattie is learning alot about himself, his relationships, and what is really important (like the golf balls in the jar). And you, Vicki, are a number ONE educator in my book. Although I have worked in the counseling profession for over thirty years and frequently counsel individuals with chronic or terminal illnesses and their family members, you have opened my eyes to the "quieter" or "unspoken" dilemmas that are presented to people in their fight to heal and improve their physical/emotional well-being. My sincere thanks to you for this education that I am receiving through your blog. And by the way, my personal motto is, every day I want to teach something to someone and learn something from someone and invariably these two activities happen outside a classroom, sometimes with people I least expect will help me achieve these goals. By the way, Vicki, if you want to look at your teaching another way, consider the fact that since you started the blog you have had over 45,000 teaching moments based on blog count - can't do THAT in a classroom! Take care of yourself, dear friend."

March 4, 2009

Wednesday, March 4, 2009

Wednesday, March 4, 2009


Quote of the day: "In between goals is a thing called life that has to be lived and enjoyed." ~ Sid Caesar


I think Sid Caesar was absolutely correct. We live in a society that is so quick paced, technologically connected, and the mission is getting things done and accomplished as fast as possible. With all of this pressure, we forget to live and enjoy life. I know that Mattie's illness has allowed me to see the importance of reprioritizing things in my life. It is a shame that such a major wake up call is needed to see the importance of living life, and not to solely work through life to live.


Mattie was up frequently last night using the bathroom, but he had the chance to sleep in this morning. Whitney, one of Linda's former interns, contacted me yesterday and said she could work with Mattie today. Whitney has changed her Mattie days to wednesday, rather than mondays, when we are usually in the clinic and Mattie has access to Jenny and Jessie. Whitney's presence was very needed today. Mattie needs fresh blood to interact with, and he was always very fond of Whitney. Whitney has a special way about her. She has insights about illness that are important and give her a greater appreciation for working with Mattie. In addition, her gentle and energized demeanor is a good match for Mattie. Mattie was excited to see Whitney today! While Mattie was with Whitney, I suppose I could have sorted through Mattie's toys and books piling up all around me. But I did not feel like that. Instead, I e-mailed Ann and asked if she wanted to get together. Ann and I see each other on a regular basis, but when we are together we are usually focused on Mattie. So it was nice to have a minute to catch up with each other. Thank you Ann for lunch, tea, and for chatting. It was lovely to escape for a few hours and to see normalcy. I also want to thank the Keefe family for being our on call mid-day helper. We value this support. It was funny while I was driving in the car today, I turned on the radio, and heard advertisements for spring break vacations. It was a very unsettling feeling to hear this on the radio. First of which I can't believe we will be entering the spring season, mainly because the summer, fall, and winter were a blur to me. I feel like I have lost a part of my life, which I will never get back again, and while I was with Ann today, part of me felt like a zombie. But she brought me back to reality. Of course, hearing about spring break only further illustrates to me how different our world is now. Mattie is not a student, I am not an educator (who follows a semester schedule), and instead we are trapped in a bad pattern of going back and forth to a hospital with no break in sight. Sure you could say our break is when Mattie finishes chemotherapy in May or MTP in September, but I am very aware that this will never really be over for Mattie or us. This is a hard pill to swallow.


When I got back home today, Mattie and Whitney were having a great time together. Mattie was playing with Whitney in his room. He enjoyed showing his toys to her, and he pulled out thomas trains and tracks which I hadn't seen in ages. Seeing these trains sent me back to when he was a toddler. Reminiscing can be bittersweet. Whitney told me that Mattie was very active today, and she even snapped a picture of him dressed as a knight. Got to love it! I think the picture of Mattie and Whitney is also very sweet. It was wonderful to have Whitney around today, and it really helped to break up the long day.

After Whitney left, Mattie and I played a dog game. We hadn't played this game in a long time. He made up this game a while ago, in which he is the dog, and I am his owner. However, this dog talks. His story line is a little bit like the book series Martha Speaks. We had fun doing this for a while, and then we worked on a 300 piece puzzle. I purchased this puzzle for him at Target today, and the title of the puzzle is "The Happy Family." It features a mama duck and her ducklings. As soon as Mattie saw this puzzle, he said that this puzzle was like him and I and like our family. Mattie had a visit from JJ (our resident Jack Russell Terrier) this afternoon. JJ came by to enjoy a piece of pizza. Mattie loved seeing JJ demolish the pizza in seconds! Mattie and JJ have a lot in common with this respect.
As the afternoon wore on though, I was wearing out, and still suffering a migraine headache. So I asked Peter if he could come home a little earlier tonight. Which he did. Around the time Peter came home though, Mattie started to develop a headache as well. He then fell asleep for about an hour, and then when he woke up he was hysterical. He was complaining of head pain, and there was no calming him down. I am hesitant to give him Tylenol unless the doctor thinks it is okay, so at 8pm, I paged the doctor. Dr. Gonzalez called back right away and she said if Mattie did not have a fever, he could take tylenol. When I got off the phone, Mattie proceeded to have a further meltdown. Both Peter and I are frayed at the edges, so Mattie's meltdown doesn't help our already fragile state. We both had to walk in the kitchen because we needed a time out to regroup. Mattie refused to take tylenol, yet has a bad headache. Finally we sat next to him and tried to reason this through with him, that he had to do something to make himself feel better, such as lie down, eat something, or take tylenol. He voted on the eating something. He ate a waffle but 30 minutes later vomitted it up. So we shall see what else happens this evening. He also needs a central line dressing change, and is refusing to do this. God, when will this become easier? The hospital questions why I don't change this thing every other day, I think they should see a day in my life. Changing the dressing is a major production, which stresses both Peter and I out beyond what is necessary. You would think Mattie would have gotten used to this over time, but he hasn't! In fact, he has become even more sensitive to be touched.

So it is 9pm, I am taking a break to finish writing the blog and eating dinner. We want to thank the Brandt family for a wonderful dinner from the Cheesecake Factory. We appreciate your support, and I of course appreciate the cheesecake! I hope this dinner break gives Peter and I the necessary perspective and energy to reason with Mattie in order to change that dressing. Mattie and I head back to the hospital at 11am tomorrow. We will start off in the clinic, where he will get a check up, have his vitals taken, and then will have the administration of MTP-PE. We will then be admitted to the hospital for a 48 hour infusion of Cisplatin and Doxorubicin. Why does it feel like we never left the hospital? Yet back we go because we know we have to!
I end tonight with two e-mails. The first one is from my friend, Charlie. Charlie wrote, "Thank goodness for the resiliency of children. I read the blog and all I could do was laugh. Not only did Mattie have a good day but reading about pooping animal medics made me smile too! And while the doctors and nurses don't actually come and poop on the floor, clearly what they bring often strikes Mattie as not much more appealing than poop so somehow that play is quite appropriate. Poop is more than physical-that's why we often refer to people who have a negative attitude with an adjective that refers to elimination functions. I think you and Mattie have run into more than your share of those over these eight months. Fortunately, the good staff outweighs the bad.As for the scan, I won't tell you not to worry but I will say do your best not to borrow trouble, there is always enough immediately available without mortgaging the future."

The second e-mail was sent to me by Rosalinda, my cousin and Godmother. Thanks Rosalinda for this meaningful story!
TWO GLASSES OF WINE
When things in your life seem almost too much to handle, when 24 hours in a day are not enough, remember the mayonnaise jar and the 2 glasses of wine...A professor stood before his philosophy class and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was. The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was. The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous 'yes.' The professor then produced two glasses of wine from under the table and poured the entire contents into the jar, effectively filling the empty space between the sand. The students laughed. 'Now,' said the professor, as the laughter subsided, 'I want you to recognize that this jar represents your life. The golf balls are thei mportant things; your family, your children, your health, your friends, and your favorite passions; things that if everything else was lost and only they remained, your life would still be full.' The pebbles are the other things that matter like your job, your house , and your car. The sand is everything else; the small stuff.' If you put the sand into the jar first,' he continued, 'there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you. ''Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical checkups. Take your partner out to dinner. Play another 18. Do one more run down the ski slope. There will always be time to clean the house and fix the disposal. Take care of the golf balls first; the things that really matter. Set your priorities. The rest is just sand.' One of the students raised her hand and inquired what the wine represented. The professor smiled. 'I'm glad you asked. It just goes to show you that no matter how full your life may seem, there's always room for a couple of glasses of wine with a friend.'

March 3, 2009

Tuesday, March 3, 2009

Tuesday, March 3, 2009


Quote of the day: "Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it's the only thing that ever has." ~ Margaret Mead

It was wonderful to sleep at home last night, even if it meant I was on the floor in Mattie's room. It was thrilling to hear no noise and to not have people coming in and out of our room throughout the night. I am always on the edge while sleeping in the hospital, because you never know who is going to walk in. I certainly trust the HEM/ONC nurses, but I have learned that others can and do walk in, and you have to have your wits about you at all times. This state of being in constant hyper alert mood, does not only make you edgy, stressed, but at times it also makes you unable to sleep.


Mattie is on IV hydration at home, so he was up a couple of times last night. But this morning, he slept so soundly he did not even realize he had to go to the bathroom, and therefore had an accident. I had done three loads of laundry at hospital to avoid having to do laundry during our two days at home. That was wishful thinking.


Mattie woke up in a good mood and has an appetite back. He ate oatmeal and pumpkin bread for breakfast, and then agreed to entertain himself so I could get dressed. When I got out of the shower, I could here things being moved around and paper flying downstairs. So I walked down the stairs, and there was Mattie opening many of the packages he received in the mail. He looked at me like the cat who swallowed the canary. His response was he was only opening the packages that were addressed to him and also made sure to keep each card with its appropriate package. You got of love him!



This afternoon, Alison came over to visit us. Alison is a SSSAS mom, a friend, and Mattie's Fund and communications coordinator. Alison went grocery shopping for me. Thank you Alison for generously providing us with the items we needed! Alison rearranged her day so she could spend a good portion of her afternoon with us. Alison brought Mattie several gifts such as jellybeans (which he loved!), marshmellow peeps, scratch art books, and his all time favorite, a wind up chicken that lays colorful eggs. Of course with Mattie's one track mind, I am sure you can already guess what Mattie thought this chicken was doing... not laying eggs, but pooping of course! He called this cute chicken, the "pooping chicken." Well Mattie and Alison built a whole play scheme around the "pooping chicken." Naturally the pooping chicken needed a buddy, so Mattie pulled out Linda's "pooping cat." Yes he still has this toy which he received from Linda in the fall. So the pooping cat and the popping chicken teamed up and went to school together. The chicken became a nurse and the cat became a doctor. Their one main problem though is that every time they went to visit patients in their hospital room, they landed up pooping in front of them, all over the hospital floor. I had the fun of playing the patient, and reacting to nurse chicken and doctor cat pooping in my room. It was a six year old boy's play at its finest. Alison really engaged Mattie today, and at several points in their play he was happy for me to walk away and have Alison to himself. This gave me the great opportunity to do laundry and to also have lunch without having to play and jump around. Thank you Alison for the gift of your time, creativity of play, and generosity today.




I introduce you to our newest friends: Pooping Chicken and Pooping Cat!!! Thank goodness our real nurses and doctors don't act like this in Mattie's room!






After Alison left, Mattie decided to work on the puzzle ball he received in the mail from my college friends who live in Seattle. Thanks Dave and Marianne! This puzzle ball kept Mattie focused for several hours, and he was determined to finish it with me. A puzzle ball is literally a 3-D puzzle. It features a wonderful scene of ocean creatures on it. I took a picture of Mattie and the finished product. He was very proud of his accomplishment and couldn't wait to show it to Peter tonight!

Mattie was also excited to receive a fleece Red Sox blanket in the mail from his cousins (Nat, Sydney, and Will), and the Scooby Doo cookbook is a hit. We love the Scooby themed shaped cookie cutters and can't wait to use them. Thanks for thinking of Mattie. I too received gifts today. Thank you Charlie for the incredible box of assorted teas. They will go to good use and they will force me to take a minute for myself! I also want to thank Susan C. Susan is a former student of mine who reads Mattie's blog diligently. Susan read that I had trouble finding the time to exercise, so she thoughtfully brought the exercise to me. Thank you for the aerobic twisting stepper. This gift really intrigued Mattie too and I think if he could use it, he would. Thank you for supporting us, and for your very generous and thoughftul gift!

This evening, Mattie had a JJ (our resident Jack Russell Terrier) delivery. JJ and JP (JJ's owner) brought Mattie some pasta and pizza. Mattie ate well, it was great to see. Thanks JP! We also want to thank the Dunn family for your tasty dinner. We loved the roasted chicken, and thank you for your nice note as well! Needless to say, the support of our family is greatly respected and appreciated.


Wednesday is our second day at home before we ramp up to go back to the hospital. Catherine Silver, our case manager called me today to let me know that Mattie's next CT scans and bone scans are scheduled for March 19. So I have a few weeks to stress over that. I realize I can't do anything about the results, but none the less, I need time to prepare for the results to go either way. I think I HATE (Yes I used the hate word, the word we try to teach our children not to use, but guess what? With cancer this seems like the cleanest word one can use to describe just how horrible a disease it is.) scans as much as the cancer itself. It is amazing how test results can change your life instantaneously!

I end tonight with a message I received from my friend, Charlie. Charlie wrote, "I read the blog in amazement. I knew that you were determined to continue to press to have the laboratory situation sorted out but it is hard to understand where you find the energy at this point to continue pushing the envelope of medical care. I feel very strongly that you are correct; the mission, needs and processes of PICU and HEM/ONC are very different and in some ways are polar opposites and often in conflict as a result. While the patients they care for are in the same age range, they don't have much else in common. This leads not only to the turf wars you mentioned but also to lapses in "best care practices" for one or the other of the populations. Unfortunately given the critical situations that can quickly arise for either population this can lead to some very unpleasant results. A big thank you to you and Peter for making sure that administration knows that parents/consumers, are aware of what is going on and will be watching. That is the only thing that moves them to correct a situation. I am sure that while all of this is over Mattie's head, he does find it all confusing and somewhat concerning. I think he handles this stuff better than most adults would. It is clear that his ability to adapt and adjust is due to you and the loving, supportive care that you and Pete provide for him. Thank goodness for the help provided by the special folks of the hospital staff (childlife room, ONC nurses) and all the members of the Mattie bear brigade."

March 2, 2009

Monday, March 2, 2009

Monday, March 2, 2009

Quote of the day: "Anybody can become angry, that is easy; but to be angry with the right person, and to the right degree, and at the right time, and for the right purpose, and in the right way, that is not within everybody's power, that is not easy." ~ Aristotle

I am writing this blog from home tonight. Mattie was discharged from the hospital after 5pm today. He cleared methotrexate at around 4am with a .07 level! In fact, Mattie's nurse, Erin, delivered this good news to us in a very cute way! She taped Mattie's lab report on the inside of his door before 4am, and it had star stickers all over it, and it said Mattie was a winner. It was adorable, and added a lot of humor to my morning, as I was walking around in the dark collecting urine. Mattie has a good rapport with Erin, and last night they made a deal with each other. He gives her hugs for empty syringe tubes which he uses to shoot water at things. It was priceless to hear him cutting this deal.

With the winter storm today, Peter did not have to go to work. This was actually a God sent, because I needed his help managing all the people we had to speak to about VRE. It took both of us! Of course having Peter around to help with Mattie and to help move out of the hospital was super helpful!

Mattie slept in again this morning, and while he was sleeping there was a knock on the door. It was Dr. Morel, you may recall she is the chief of infectious disease at Georgetown. I am thrilled that I was introduced to Dr. Morel. She is an outstanding doctor, empathetic, and knows how to get the job done. Dr. Morel followed up with me this morning. She told me she had good news for me. I had no idea what that meant, so I just listened. She explained to me that Georgetown uses technology to process stool cultures. So literally a machine was doing the analysis last week (the analysis that said the culture was positive - remember I had great doubt in this positive result, but I figured I couldn't fight the system, but it pays off to keep asking questions and of course to find the right person to talk to). Typically the machines do an excellent and accurage job (or so I am told), but not in Mattie's case. Dr. Morel had the clinical microbiology lab pull out Mattie's stool sample from February 18 on Sunday and analyze it by a trained human eye/hand, rather than a machine. Upon inspection the only thing that turned up positive on the culture was lactobacillus, and NOT VRE. Dr. Morel explained to me that the machine that originally processed the culture identified lactobacillus as VRE, because the structure of the bacteria can look similar. I suppose they can look similar to a machine, but not to a trained person! So Dr. Morel apologized and told me Mattie never had VRE. In addition, she told me that the second stool culture taken from this past friday (the Feb 27) was also negative for VRE.

I just could not get over what I was hearing. We went from not having VRE, to having VRE, back to not having VRE over a 10 day time span. Talk about an emotional rollercoaster. Mind you, all through this time, Mattie went from being isolated, to no isolation, to being isolated again. It was very confusing to him. Dr. Morel told me that Peter and I would have a chance to talk with Dr. Stephen Peters, who heads up the clinical microbiology lab at Georgetown, in order to have a better understanding for what transpired. I was so happy Mattie did not have VRE, and that he wouldn't have to deal with the consequences associated with having such a contagious infection. I spoke to Dr. Morel about probiotics, or supplements such as acidophilus that can be taken while Mattie is neutropenic and on antibiotics, so that we could avoid the development of "bad bacteria" in the future. However, several doctors have cautioned me about their use in children with cancer. In fact, when I spoke to Dr. Peters' today, he said that even on probiotics, Mattie could still easily get VRE, because he is immunocompromised and living in a hospital setting.

Dr. Peters came to visit Peter and I today. We had to give him a synposis of what transpired with Mattie's culture. Dr. Peters said he is trying to track down the technician overseeing Mattie's case, so he did not have specific answers for us yet, but he knew how upset we were, that he wanted to come and talk with us about the error that took place. To make a long story short, Georgetown processes many cultures per day, and there just aren't enough human resources available to perform confirmation checks of cultures that are flagged as positive by the machine. So if the machine claims they are positive, they are considered positive. So clearly, Peter and I could see that we weren't going to have much of a chance at changing this system, a system that Georgetown invested heavily into. I was frustrated by this because I feel if Mattie got a false positive, who knows what else this machine is missing. Dr. Peters told us that the machine is right 9 out of 10 times. Our luck! I said it is unfortunate that there is no real human accountability for these machines, but I told him, if this happens to Mattie again, that I am calling Dr. Morel and him directly. He gave Peter and I his office and pager numbers. I tell you, I am getting quite an education at Georgetown. I am learning what questions to ask, and who to turn to in order to get the appropriate answers to our questions. Dr. Morel told me that I am getting an honorary medical degree. I agree!

Here is some specific information about lactobacillus. Lactobacillus acidophilus is one species in the genus Lactobacillus. It is sometimes used commercially together with Streptococcus salivarius and Lactobacillus delbrueckii ssp. bulgaricus in the production of acidophilus-type yogurt. Lactobacillus acidophilus gets its name from lacto- meaning milk, -bacillus meaning rod-like in shape, and acidophilus meaning acid-loving. This bacterium thrives in more acidic environments than most related microorganisms (pH 4-5 or lower) and grows best at 30 degrees Celsius. L. acidophilus occurs naturally in the human and animal gastrointestinal tract amd mouth. acidophilus ferments lactosei nto lactic acid, like many (but not all) lactic acid bacteria. Certain related species (known as heterofermentive) also produce ethanol, carbon dioxide, and acetic acid this way. L. acidophilus itself (a homofermentative microorganism) produces only lactic acid. Like many bacteria, L. acidophilus can be killed by excess heat, moisture, or direct sunlight. Some strains of L. acidophilus may be considered a probiotic or "friendly" bacteria. Probiotic bacteria literally means "for life," meaning a probiotic bacteria aids human life. These types of healthy bacteria inhabit the intestines and protect against some unhealthy organisms. The breakdown of nutrients by L. acidophilus produces lactic acid, hydrogen peroxide, and other byproducts that make the environment hostile for undesired organisms. L. acidophilus also tends to consume the nutrients many other microorganisms depend on, thus outcompeting possibly harmful bacteria in the digestive tract. During digestion, L. acidophilus also assists in the production of niacin, folic acid, and pyridoxine. L. acidophilus can assist in bile deconjugation, separating amino acids from bile acids, which can then be recycled by the body.

In addition, to the meetings with Dr. Morel and Dr. Peters, I also met with Jeff Turner, our HEM/ONC nurse manager, and Alice Pengra, his boss. Peter and I continue to be frustrated with the fact that the oncology unit is temporarily housed within the PICU. The hospital is under construction and because of renovations, units had to be consolidated together. At the moment, what once was just the PICU, houses the PICU, the oncology unit, and general pediatrics. That sounds okay in theory, but it isn't in all reality. PICU and oncology needs are VERY different. In fact, the personalities and styles of PICU and HEM/ONC nurses are very different. They are all very competent and capable, but the population they serve are like night and day. PICU serves children in crisis and with short term issues, and well HEM/ONC nurses work with children and their families on a very long term basis. For Mattie and us, the hospital has become our new home. However, in a PICU, there is activity 24 hours a day, all sorts of noises, machines beeping at all hours, and cries of pain, and so forth. It is a very unsettling environment to live in long term. It is hard on the patients as well as the nurses. It forces two groups who perform very different tasks to have to work together, and of course there becomes turfdom issues. We truly believe that the hospital did not think it through when they lumped all these units together. It may have been cost effective, but I can assure you this was not a wise decision from the perspectives of staff morale and patient care. I believe that with the co-mingling of care issues, HEM/ONC children are being exposed to illnesses and infections that they wouldn't normally have to contend with if they had their own unit. To me this puts the oncology children at risk, and the psychological consequences of getting treated within a critical care unit as a PICU can be challenging and depressing. Mattie sees children intubated every day. These children are pretty much not moving, not talking, and so forth. It can be scary, and why subject Mattie and other oncology children to this, they have enough to contend with. So I spoke with Alice about my concerns today, because Georgetown has promised for months now to reopen the HEM/ONC unit, but it just fails to happen, because I don't think the hospital administration views this as a priority. Alice heard my concerns, but as an admnistrator, I realize she has to sing the party lines. I got my point across, and we both agreed to disagree about certain aspects of things. But I don't take no easily, so Peter and I will continue to escalate the issue up higher. We have the support of our HEM/ONC doctors and nurses, and I think it is about time that the hospital hear from its consumers. As Peter reminds me, Georgetown is doing well financially from Mattie's insurance claims alone. So what I am trying to tell you is that it was a FULL day of advocating and standing up for doing the right thing. It isn't easy when you are exhausted, and I would imagine most of you could be saying, why are they doing this? Why? I guess I do this because advocating for something I believe in makes me feel alive in a time when things seem to be coming down all around me. I also advocate for things I truly believe in, and I think Mattie, other oncology kids, and the HEM/ONC nurses and practice at Georgetown are worth investing time in.

In the midst of all of this, Peter and I also had a misunderstanding with one of the charge nurses on the floor that we have gotten to know well. Peter and I were both quite upset, and I was so upset that I wasn't leaving the hospital today without confronting the nurse. I will not get into the issue on this blog, but I felt the need to work this out. I felt that her actions were deeply insulting to Peter and I, and after I spoke with her, I felt that we both had a better understanding about where each of us was coming from. In addition, this nurse told me that she trusts me completely, "with her life" was the terminology. This kind of took me back a bit, but one thing is clear the nurses observe me and the kind of advocacy I do. I don't even realize what I am doing, I just do it. I have a feeling any of you would do the same too if Mattie were your child. It is the only thing you have control over, and to some extent we all feel the need to control aspects of our lives. Otherwise there is just chaos. These eight months have been total chaos for Peter and I.

So you may be asking yourself, what on earth was Mattie doing while we are contending with these issues. Well fortunately for us, we had Jessie and Liza (one of our favorite volunteers) helping us today. Mattie got his MTP-PE administration, and did beautifully. But it made him very tired and he fell asleep for several hours. Thank you Jessie for playing with Mattie while I went to a meeting, and thank you Liza for waiting with us today, chatting, and watching Mattie. Also for helping us to the car. We are so fortunate to have these ladies in our life. We left the hospital at around 5pm and by the time I got Mattie out of the car and inside our home, it was a quarter to 6 in the evening.

We want to thank the Bentsen family for checking in with us and being our mid-day helper today! We also want to thank the Cruz family for a wonderful dinner. Jackie your special pasta sauce is lovely, and thank you for sharing it with us. Mattie devoured your organic pizza tonight and the homemade pumpkin bread. The bread was a hit! Mattie also loved Caroline's note and treat! Thank you for supporting us on our first night home. Tuesday and Wednesday will be quiet days for Mattie and I. We return to the hospital on thursday for more chemo. But I am looking forward to hearing no noises while I sleep, and of course not see isolation gowns and gloves! Outstanding.

I end tonight's blog with two e-mails I received today. The first e-mail is from Susan. Susan was a former student of mine, and now a friend. Susan wrote, "You know Vic I was reading Sunday's blog, and looking at Mattie's pictures and for some reason his pictures really struck me. I look at his his little face and am so incredibly impressed by the genuine joy in his smile as well as as the look of self satisfaction. If he had his hair you wouldn't even know he was sick. His countenance shows this glow that seems to come from deep within. I think it is a glow of joy for whatever reason. It is like Mattie is a light to which many people are attracted. At only age 6 he has already had touched so many people..and make us reflect on ourselves, our view of life. It's an enormous impact and he doesn't even know it."


The second e-mail is from my friend, Charlie. Charlie wrote, "I have to tell you how much I admire you and Pete for following through in a productive way in such a difficult situation. Some people get angry, rant and then do nothing; others mutter and turn away. The key is to use the anger at an unjust/improper situation to fuel a drive to make change happen. Once again, you've started that process, this time with the infectious disease personnel. I can only imagine how many lives will be impacted by the results of a change in process that will protect patients from this situation in future. I hope Mattie makes a swift recovery from this infection and that what you have to deal with now is as significant as it gets. I too, wonder how many are walking around with infections that have no discernable symptoms, which should just remind everyone how critical it is that we continue to clean and monitor even when all seems well. Our bodies, like our lives are a balancing act, sometimes there is a little more "play" in the system and sometimes the balance is on a very sensitive scale...I hope you reach a point soon where every decision, every situation does not have to weighed and measured for its possible life sustaining or life threatening impact but just its intrinsic worth or how much fun it might be."

March 1, 2009

Sunday, March 1, 2009

Sunday, March 1, 2009


Quote of the day: "Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are." ~ Arthur Golden

Mattie fell asleep early on saturday night. He had a full day of activities on saturday thanks to Tanja and Carrie, all that stimulation was very good for him. However, because Mattie is on IV hydration to flush his system of methotrexate, he was up every two hours going to the bathroom. With methotrexate though, it is not just the process of helping Mattie with the bathroom, but every four hours you have to capture urine for collection. The irony is methotrexate is only a four hour infusion, but it takes days to recuperate from it as it passes through Mattie's system.

When Mattie woke up this morning he was in a good mood. He knew that Caroline Eaton, a third grade teacher at SSSAS and his piano teacher, and Leslie Williams, Mattie's kindergarten teacher were coming to visit him. I located childlife's keyboard this morning and brought it into Mattie's room. Now I am hyper sensitive about germs (not a good thing for me, since I consider myself a neat fantatic to begin with), so when the piano came into the room, I wiped down every key and all its parts. There was no way I am taking any chances with anything coming into the room if it has been around the hospital.

Caroline visited today. Usually Caroline works with Mattie at our home, so this was her first time in the PICU. She couldn't get over how small the room was, and she instantly understood how trapped Mattie and I must feel while being isolated during the day. Caroline brought two special treats for Mattie, an ice cream cone clown from Baskin and Robbins and a pumpkin bread loaf. Mattie devoured two big slices of pumpkin bread. It was wonderful to see! Even Miki, Mattie's nurse, was impressed with the fact that Mattie was eating today. Thank you Caroline for these treats and for your generosity of time and support! Caroline and Mattie worked on playing one of his favorite songs, "Oh Christmas Tree." Who says this song can only be played in December?! Mattie had a great time, and also Caroline and Mattie worked on some Mad Libs books she brought. Mattie never did Mad Libs before (you fill in a bunch of words of your choosing in a scripted story), but he generated some very funny stories. Caroline was telling me she felt as if Mattie was actually reading some words. I was thrilled to hear this. Mattie has been so far removed from school, and I must admit I don't have the energy to work on things with him like I used to. Some how in the grand scheme of things in which I am dealing with life and death issues, whether I teach him to read or not hasn't been my top priority. But some how I sense a change in Mattie. I am not sure if it is a surge of energy or a change in attitude, but he wants to learn.

While Caroline was with Mattie, I had the opportunity to talk with Dr. Myers (the Hem/Onc attending doctor on call this weekend). I told him of my disappointment with how this VRE situation has been handled. He did tell me that he has been trying to get down to the bottom of things today, but on a sunday it is challenging. Dr. Myers did page Dr. Morel for me. Dr. Morel is in charge of infectious disease at Georgetown. The irony is I have seen Dr. Morel many times before, but never knew who she was. Dr. Morel spoke with me in the hallway, and I told her that Peter and I are livid. I explained what transpired. She agreed this wasn't acceptable. She explained to me that my issue was with infection control, not infectious disease of the hospital. Infection control oversees the lab procedures at the hospital and then implements how and when patients are put into isolation. Dr. Morel assured me that I would have the opportunity to talk to Dr. Peters, who apparently works in Infection Control and would be responsible for not reporting the results and contacting the PICU in a timely fashion. Wonderful, I can't wait to meet him on monday! However, Peter and I have learned that we must educate ourselves before talking to doctors. So this morning while Mattie was sleeping, I started researching VRE. I found enough to know that I should be concerned. I e-mailed Peter, and he too started searching the Web. So I shared some of my concerns with Dr. Morel, after all, Dr. Morel is the infection expert. I asked her if it was true if VRE could eventually turn into a more serious infection such as sepsis for example, and whether this ultimately could delay Mattie's chemo. She said the probability is low, however, it can happen. She confirmed my fear. However, she told me right now, Mattie is asymptomatic for VRE and therefore it is better not giving him antibiotics. She said that the flora in Mattie's intestinal tract needs time to replace themselves, and once this happens the VRE will disappear on its own. Adding more antibiotics can only do more harm than good at this point because this infection is already resistant to most antibiotics. In addition, I asked her if Mattie got this infection from being on vancomycin or whether he captured this infection from another patient or health care worker. Her feeling was the latter and than the former. But here is the real rub, Mattie had diarrhea only one day last week. If he never had that symptom that ONE day, we would never have flagged him for VRE and he would have been just carrying the infection around without us knowing about it. I say this, because I have no doubt there are probably many people asymptomatic at the hospital, who we do not even know are carrying these infections. Makes you pause. Unfortunately for Mattie though, Dr. Morel feels that he could be in isolation for weeks or months. She says it could take a long time for this bacterial infection to move through his system. Just what I wanted to hear!

After my conversation with Dr. Morel, I called Peter. Peter and I then decided it was time to get Dr. Shad involved. Dr. Shad is the director of the HEM/ONC pediatric practice. Dr. Shad is in Pakistan on business. But she immediately responded to Peter's e-mail and told him to call her. She spoke to him for 15 minutes, and she heard enough and was deeply angered by what was happening to us. We look forward to having Dr. Shad come back to DC and our opportunity to meet with her in person.

Mattie and Caroline had a good time reading me their Mad Libs creations and of course playing "Oh Christmas Tree" for me! Thank you Caroline for coming to the hospital today. About 15 minutes after Caroline left, Leslie Williams arrived. Leslie was Mattie's kindergarten teacher at SSSAS. Leslie is also a GW graduate, and I have told her many a time, that I enjoyed coming into her classroom as much as Mattie did. I had the opportunity to participate actively in Mattie's kindergarten experience, and I miss these special moments. In a way seeing Leslie was a surreal experience today, because it makes me reflect on how different our life is now. She signifies a happier and healthier time in our lives. Though Mattie doesn't see Leslie often, he instantaneously bonded with her. Mattie was always very fond of Leslie, and I had a feeling their connection would help him now get back into the more academic side of his life. Leslie knows Mattie, what he is capable of, and his learning style, which I think is crucial as he starts to reengage with his outside world.

Leslie brought all sorts of books today as well as a wonderful word game with dice and game pieces. Mattie was fully focused and very cooperative with Leslie. It was beautiful to see this, in fact, as Leslie was leaving, Mattie told her he enjoyed his time with her and wanted her to come back soon. He meant it with great sincerity! I was touched by his comments, and being a teacher myself, I know how special it is to have such a special connection with your students. Mattie also did an after school club with Leslie at SSSAS last year. Leslie runs a construction club, where the kids have the opportunity to build things out of found objects like boxes, cups, lids, etc. I joke with Leslie all the time, I think her club inspired Mattie to work with cardboard boxes. This love for building and boxes continues this year at the hospital. All you have to do is ask Linda, Jenny, and Jessie. They will fill you in on their mission to find interesting boxes within the hospital for Mattie. As Leslie was leaving today, he wanted to create a construction club type structure. Fortunately Leslie had lots of building materials in her car. She ran down to her car, and in a few minutes came back with a bag of fun objects that Mattie could put together with his hot glue gun. He was thoroughly thrilled. I snapped a picture of Mattie and Leslie today, to capture this special moment in time.

Peter came to the hospital this afternoon. After he arrived I headed home for a few hours. I needed to get away. I can't shake my migraine headache, but I know it is related to stress and lack of sleep. I came home and slept for 90 minutes and will head back to the hospital shortly. Mattie was proud of his construction project that he made with Leslie's materials. I introduce you to the newest member of our room, "Mr. Submarine."






While I was home, Charlotte and Ellen (Charlotte's mom) came by to visit Mattie. Peter tells me that Mattie was a good friend today. He offered Charlotte a choice of activities and they agreed on watching a Scooby Doo movie, as well as shared cupcakes, cheese sticks, and pumpkin bread together. They had a good time and Charlotte designed a special silk hoop creation for Mattie, which we will hang on our hospital ceiling. Thank you Ellen for bringing Charlotte by and I am sorry I missed your visit. Peter snapped some pictures of Mattie and Charlotte. Check out his big smiles and Charlotte's hoop creation of herself, so Mattie will remember her when she is not around.










We want to thank the Doane family for a wonderful dinner from Clyde's. Mattie is thrilled to have picked out his own dinner, and I am happy to report that Mattie actually ate chicken. WOW! I of course loved the crabcakes! Mattie loves all the legos, and was busy working on one set when I came back to the hospital tonight. However, I am truly touched by your gift to me. I received a lovely pink bag filled with chocolate, my favorite tea (Earl Grey), and a Sandra Bullock movie. This is like the perfect mental health package for me! I clearly see your family reads the blog because you know all my favorites! Thank you for your generosity and support! It means a great deal to us.


In addition to being isolated, Peter and I are faced with another great sadness. There is a little boy Mattie's age, who we have had the opportunity to get to know since we started chemotherapy. This little boy has a different form of cancer, and he has been fighting cancer since he was TWO! The family has tried everything for their son, everything from mainstream therapy to experimental treatments. I learned yesterday that this little boy is dying, and doesn't have much more time with us. I heard that the family was coming in this weekend, and a part of me was dreading this, because I can't even imagine how this family is feeling. Today when Peter entered our room his eyes were blood shot. I asked him what happened, because clearly it looked like going home and getting sleep did not help him. He told me that wasn't it. He told me that he ran into the mom of this little boy, and he told me she was devastated and her situation couldn't help but overpower Peter. I am not sure how I will respond to this mom, because this is our worst nightmare, and when it hits someone you know, who you went through treatment with, it impacts you personally. I will never forget the one time I met this little boy in clinic when he was feeling well, he was full of life and making model magic scultpures for all of us, me included. It doesn't seem fair, just, or normal for a six year old to lose his life. I am not sure God's plan here, but I have to say I don't get it! There is a great deal of pain and suffering happening within the PICU, and it is hard for it not to get to you after a while. For those of you out there praying for us, say a prayer for this little boy and his family. They need your support and good thoughts of strength, peace, and hope.

Mattie's methotrexate blood level is .72 today. As we head into monday, Mattie will get an echocardiogram in preparation for his next round of chemo this coming week. Mattie will also get MTP-PE, and then it is our hope that Mattie will be able to leave the hospital (assuming his methotrexate level is .1 or below). But we will be back on wednesday or thursday for more chemo! Got to wonder if it even makes sense to leave the hospital! The effort to move in and move out of the hospital is so exhausting.

I end tonight with an e-mail I received today from Charlie. As many of you know Charlie is a former student of mine. Charlie writes to me everyday, and I can attest to the powerful connections between teachers and their students. Thanks for your friendship Charlie. Charlie wrote, "It hardly seems possible that eight months have gone since Mattie was diagnosed. Some days it must seem like much less while on others it seems like forever. Illnesses test not just our strength but our connection to reality, how much more so for you and Pete who are so often disconnected from all your normal daily tasks. Many thanks to all the people who have stepped into the breech to make Mattie's isolated stay in the hospital one of the positive ones rather than the negative it could so easily have been. Tanja, Carrie, and Lorraine, all of whom turned learning into fun and made the day a memorable and exciting one for Mattie. I was so glad to see this because I was just imagining how difficult it would be with Mattie in a small space and nothing to productively occupy his time. And as the radio stations say, a "call out" to all those who have found creative ways to get Mattie to eat. Truthfully, I can remember very, very few patients (most of them adults) who managed to stay off of a feeding tube with this length of chemotherapy. I am so glad for everyone's sake that you have been able to avoid this as eating is so much better in both the long and short run. Kudos to you (for your encouragement of Mattie) and all those people who have provided meals and snacks for your family."