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

February 28, 2009

World Rare Disease Day

Saturday, February 28, 2009

Quote of the day: "Some people think only intellect counts: knowing how to solve problems, knowing how to get by, knowing how to identify an advantage and seize it. But the functions of intellect are insufficient without courage, love, friendship, compassion and empathy." ~ Anonymous

The National Organization of Rare Diseases (NORD) acknowledges February 28, 2009 as World Rare Disease Day. The purpose of this day is to call attention to the public health issues associated with rare diseases (of which Osteosarcoma is one!), which affect nearly 30 million Americans and countless others around the world. Though my family lives with this rare disease 24 by 7 (and will be for the rest of our lives), it is wonderful that at least there is one day a year where such rare diseases are acknowledged in some way publicly.

Peter tells me that Mattie was up every two hours on friday night. Mattie did not make it to the bathroom in time at some point during the night, and Peter and the nurse were cleaning up Mattie and the bed. As for myself, I couldn't wake up this morning and literally slept until 10:30am. I arrived at the hospital around 12:30pm, and Mattie had two visitors today. Tanja (a SSSAS mom and friend) and Carrie (my teaching assistant and now friend) came to visit Mattie and entertain him for two hours or so, so that Peter and I could leave the room and have lunch on Georgetown's campus. Carrie came loaded with a bunch of goodies Mattie really wanted, such as yogurts and yogurt tubes. Thank you also for the fresh fruit and cupcakes! Tanja came loaded with amazing activities. These ladies transformed Mattie's room into a fun and educational center. It was hard to believe Mattie was actually isolated today, because he did so many wonderful activities right within his room. I am not sure how I can ever thank Tanja and Carrie. Mattie is still talking about the fun things he did today! When we left for lunch, Mattie was working with music sticks, and bouncing and dancing to the music. Even Tricia, Mattie's nurse, was getting into the dancing mood!

Carrie snapped some pictures of Mattie playing today. Clearly Mattie was very engaged. He did several science experiments, participated in many activities that involved body movement using balls, and even got to explore different kinds of bugs under a magnifying glass. Check out the pictures!

Left: Mattie examining the music stick and seeing how it worked.

Right: Mattie and Tanja observing a chemical reaction, that will expand and blow up a balloon on the top of a bottle.

Left: Mattie is watching a volcano erupting!

Mattie showed me all the wonderful projects he did with sand, test tubes, and bugs. I think Tanja and Carrie stimulated Mattie incredibly, so much so, that it is 10pm, and Mattie is now sleeping. Unheard of! Thank you for making his day, and ours. Your efforts were so appreciated, and did not go unnoticed.

While Tanja and Carrie were with Mattie, Peter and I had lunch together, and then my dear friend, Lorraine, came to visit me this afternoon. In fact, I spent several hours outside Mattie's hospital room today. It was wonderful to chat with Lorraine. Lorraine and I met each other 15 years ago when we both started graduate school at GW. Lorraine has been through many ups and downs with me, and has been there throughout Mattie's birth and development. In many ways Mattie's illness deeply affects Lorraine. Lorraine and I spoke about Mattie, his care, and my concerns. While talking with Lorraine, I was able to finish my lunch. It took me several hours to eat today, because food isn't going down too well these days. Thank you Lorraine for your company and friendship. Mattie LOVES the bug book you brought him. We read the whole thing tonight, and we started one of the lego sets. They were a hit.

When I got back to Mattie's room this afternoon, Karen (a RCC mom and friend) came to visit us and brought us a homecooked dinner. Thank you Karen for the stuffed shells and wonderful pie! Mattie actually ate the shells before moving onto yogurt and cupcakes! I had a lovely conversation with Karen. She made me feel good, appreciated, and understood. I sometimes feel guilty for not having more energy to play with Mattie, but Karen snapped some sense into me. I felt like she really got it, and it is a very empowering feeling to be understood and heard. Thank you Karen!

I sent Peter home tonight to get some rest. He is wiped out, but I know that this one day at home (of course better than nothing), doesn't accomplish a whole heck of a lot for either of us, because we are so fatigued. I did speak with Tricia (one of our favorite HEM/ONC nurses) tonight about Mattie's VRE situation. Though Tricia wasn't our nurse yesterday, I learned that she was out there advocating for us on friday. This is one of the things I respect about Tricia. She truly looks out for her patients and families. She warned everyone yesterday that I wasn't going to pleased with this massive oversight, and she was 100% correct. Tricia did tell me that she spoke to several microbiologists today at the hospital, because Mattie's stool culture from yesterday also turned out positive. The microbiologist told Tricia that VRE could be colonizing in Mattie. I don't have a true understanding for the nature of this problem, but I can assure you I will be asking a ton of questions about this tomorrow. I was hoping the culture would be negative today, so this would be our first negative result out of three in order to get off of the contact isolation status. But I see this isn't going to be an easy process. However, I am more certain than ever that Mattie got VRE from a traveling nurse who a week ago did not use gloves when working with Mattie. This gets back to my resistance to work with nurses we do not know. God help this nurse, if he gets assigned to work with Mattie again.

Mattie is clearing Methotrexate fairly well. His blood methotrexate level was 2.80 today, and he needs to have a .1 or lower level to be discharged from the hospital. On sunday, Mattie has two SSSAS teachers coming to visit him. Caroline, his piano teacher, and Leslie, Mattie's kindergarten teacher. I think this stimulation will be very good for him and will break up his day of isolation. I can't thank both of these professionals for finding time in their weekend for Mattie.

As tomorrow is March 1, I realize we are heading into month 8 of Mattie's treatment. Despite the heartache Peter and I live with each day, we continue to be so thankful for the incredible support from our RCC, SSSAS, and GW communities. Today was the perfect example of people reaching out to us, and their passion to make a six year old happy and engaged. Peter and I are really seeing the worst and best of life at the same time. Thank you all for your continued support and love.

I end tonight's posting, with an e-mail I received from my friend, Charlie. Charlie wrote, "Today's quote sounds like some of the medical staff, who want to discuss a situation in a way that is devoid of all emotional content regardless of the impact on a patient's emotional and spiritual well being. I was horrified to read about Mattie's results and the lab's failure to follow up. To compound the negligence, they attempted to pass the blame off on others. I understand that Mattie needs to be isolated but, some understanding, empathy and an admission that this whole situation was not handled properly would be in order here. Perhaps you should ask if it is possible that Mattie contracted VRE from another patient who was also not informed that he or she was positive for this. Maybe that would wake them up since almost everyone who contracts VRE gets it from someone else in the hospital. I can only imagine how much more difficult this isolation is making the already stressful situation of being back in the hospital. I hope, although I don't have any faith, that steps are being taken to mitigate the effects of this on your family as much as possible. I also hope that the hospital is going to show how they intend to ensure that this situation does not happen again. Thank goodness for your advocacy and voice on Mattie's behalf; I cannot imagine how awful the situation would be without parents as dedicated as you both clearly are."

February 27, 2009

Friday, February 27, 2009

Friday, February 27, 2009

Quote of the day: "Think "impossible" and dreams get discarded, projects get abandoned , and hope for wellness is torpedoed. But let someone yell the words "It's possible," and resources we hadn't been aware of come rushing in to assist us in our quest. I believe we are all potentially brilliant and creative--but only if we believe it, only if we have an attitude of positive expectancy toward our ideas, and only if we act on them." ~ Greg Anderson

Today was the kind of day that you just have to sit back and say, ARE YOU KIDDING ME?!!!!! Thursday night was a late night. Mattie felt sick to his stomach with Methotrexate, so we had to resort to giving him ativan. Kytril, his typical anti-emetic wasn't cutting it. For most people ativan is very calming, after all it is used for anxiety as well. But not for Mattie. Many drugs have paradoxical reactions for him. So last night, after taking ativan, he wasn't nauseous anymore, but he had an inordinate amount of hyper energy. I couldn't get him to sleep until around 1:15am. Even that was a feat. I basically had to hold him down and rub his head. He was just wired.

This morning, Mattie had a hard time waking up. In fact, it did not happen until around 11am. Being a workday for Peter, I was up before 7am, so I could shower before people started popping in and out of Mattie's room. So he was sleeping but I was very much up. Kathleen was Mattie's nurse today, but Tricia also came in to visit. She brought me hot tea, which was very much appreciated!

When Mattie woke up, he was excited about the prospect of going to the playroom today. He had no scheduled chemo or procedures today, just massive hydration to flush out the methotrexate. So we were looking forward to getting out of the room, and meeting up with his little buddy, Brian. I called Kathleen in to take Mattie's vitals and to let her know Mattie was leaving for the playroom there after. At which point Kathleen told me she had some bad news for me. I figured she was kidding, but she really wasn't. She told me that someone from the infectious disease department came up to the PICU to let them know that Mattie had to be isolated. That his stool sample from last week tested positive. When Kathleen told me this story, I was a bit confused. Because we found out the results of the cultures last week, and we knew they were negative. You may recall that Mattie spent 48 hours last week in contact isolation as we awaited results. In any case, I was perplexed how could the results be negative last week, but positive this week. So already I was edgy. I asked to speak with the attending HEM/ONC doctor. Dr. Abu-Ghosh was rounding so she couldn't come in right away. I wasn't happy with this time delay. As I was waiting, and waiting, and waiting in the room, I started to get more and more irate. Mind you I am tired, I have a migraine headache, and not much else to give. So this was truly the straw that broke the camel's back. Or my snapping point. At which point, I called Linda. I asked Linda to come to Mattie's room and play with him so I could get to the bottom of the problem.

After Linda arrived, I explained the issue to her and she tried to get more clarification for me. While this was happening, Mattie was visited by Lana (one of his preschool teachers from RCC) and Lana's daughter, Erin. Actually their visit came at a great time, because they were able to divert Mattie's attention so I could sneak out and start asking questions.

I went to find Dr. Abu-Ghosh, who told me that she was in the middle of rounds and needed more time. I could appreciate that, but that did not help my situation. I told her she could take her time, but that I was going to call my patient advocates. So out came my phone and I started paging my two advocates, Gail Chisholm and Julie Andrews. Both of these women know how to get things accomplished and addressed. They both immediately called me back. Gail came up to meet with me to get the full perspective of the problem. While I was waiting for Gail, to arrive, Dr. Abu-Ghosh found me in the hallway. She explained to me that sometimes it take 7-10 days for cultures to show positive results. So she assumed this is what happened in Mattie's case. I told her this wasn't acceptable, that no one told me that this was even remotely possible. But she said it was a culture, and cultures can take this long. I then felt the need to correct her. I am not a medical doctor or an epidemiologist, so how am I supposed to know that cultures can come out negative and then 10 days later they can indicate positive growth? So I told her that it was inexcusable that the medical staff did not prepare me for this. For all I knew the issue was put to rest and I did not see contact isolation in our near future. But the story only got better.

Gail came up to talk with me, and while I was talking with her and telling her about the whole issue regarding contact isolation from last week, and today's culture issue, a person from infectious disease came to talk with me. Now here is where I LOST it. Apparently Mattie's stool culture tested positive for VRE (which I will describe in a minute) on February 18. That is last wednesday. I am only finding out about this positive culture TODAY! It turns out that the PICU and Mattie's doctors were never contacted and alerted to the positive results. Only negative results showed up on the computer. So literally Mattie has been in contact with kids on the floor and in the HEM/ONC clinic for over a week now. I was livid. I told the infectious disease person that her lab runs a very unprofessional and unethical practice. She started lecturing me about the importance of contact isolation for Mattie, at which point I laughed. I told her she has got to be kidding lecturing me about this. She and her colleagues allowed a child with VRE to be running around the hospital for over a week, potentially infecting other immunocompromised children. I told her maybe she should get her facts straight and do her job so that such an enormous oversight did not happen again. I asked her how many other kids like Mattie are running around the hospital with the delusion of negative results, when in reality they have tested positive for a bacterial infection? She couldn't answer me, but she also couldn't tell me this was an anomaly. Great! But the conversation only got more frustrating because she said she couldn't explain why the PICU wasn't notified last week when Mattie was in the hospital. She had no explanation and she said her boss wouldn't either. At which point, I told her that she and her boss were of no helpt to me, and I was going to stop wasting my breath and energy talking to her. I need to find someone who makes decisions, and I need someone to hold this infectious disease lab/department accountable. Right now there is no oversight. The irony is, Gail, my patient advocate, heard this whole story and she couldn't believe what she was hearing. The hospital in my perspective was negligent.

Gail promised to find out what channels within the hospital we have to talk with. But I told her I want a formal response from the hospital about this, and I want to know that this won't happen again. What continues to frustrate me though is that I have to constantly explain to medical doctors why I am upset. To me such an egregious oversight about reporting results would be understandable. I would also hope that doctors could understand how isolating Mattie impacts him. I have to tell you, I feel like I am hitting my head against the wall sometimes when I talk with the medical community. I wonder what really happens in medical school? Does their training suck the emotional, human, and empathetic side out of them?! One thing is for certain, doctors need sensitivity training, and all medical doctors should be versed in basic counseling skills. Just when I think I have gotten my point across to them, I find that I am right back at square one explaining my feelings all over again. In a way that is insanity defined to a T. Doing the same thing over and over again, but expecting different results. So now I need to apply a different technique in hopes of getting my message across!

So as of February 18, Mattie tested positive for VRE. VRE is the acronym for Vancomycin-Resistant Enterococcus. Enterococcus are bacteria that live in the digestive and genital tracts. Enterococci bacteria grabbed the attention of public health officials in the 1980s because of its ability to survive in humans and animals, and its knack for sharing those survival tricks with other bacteria. While enterococci are not as familiar as staphylococcus (staph) or Escherichia coli (E. coli) bacteria, enterococci infections are among the most common type acquired by hospitalized patients. Enterococci, in general, are much less capable of causing disease than staph or E. coli but still can complicate and prolong hospital stays. Virtually the only people who develop illness from Enterococcus are those who are already ill, such as individuals in a hospital intensive-care unit or those who are elderly, have diabetes, have chronic kidney failure, cancer, and so forth. So, unlike other forms of resistant bacteria, there is little chance or concern among physicians of Enterococcus becoming epidemic in healthy populations. But enterococci are of great interest because, as with many of its bacterial counterparts, it can resist and evade several forms of antibiotic therapy, including vancomycin, the antibiotic of last resort for resistant infections (you may recall that while Mattie was in the hospital for 11 days with neutropenia, he was on vancomycin). Vancomycin-Resistant Enterococcus is a mutant strain of Enterococcus that originally developed in individuals who were exposed to the antibiotic. Enterococcal infections that result in human disease can be fatal, particularly those caused by strains of vancomycin-resistant enterococci (VRE). During 2004, VRE caused about one of every three infections in hospital intensive-care units, according to the Centers for Disease Control and Prevention (CDC). Most often, VRE is spread from the hands of a health professional to a patient in a hospital or other health care setting.

Mattie can leave the hospital once he clears methotrexate within a few days, but whenever he enters the hospital or clinic over the next three weeks, he will be isolated. I tried to explain this today to Mattie, and he wasn't happy about this at all. You have to understand our level of isolation over the past seven months is huge, and this only compounds the feelings. In order to come off of isolation, Mattie will need to have three negative stool cultures. However, it is one culture per week, over the course of three weeks. So we have a long road ahead of us. Frankly I wonder how accurate these positive results are, but at this point it doesn't matter. The hospital views Mattie as having VRE, and now it is a matter of clearing it out of his system.

I do want to thank Lana and Erin today for playing with Mattie while I was resolving this issue. Thank you for a wonderful lunch, Mattie ate two pieces of pizza and of course cupcakes. I also can't wait to read Mrs. Piggle-Wiggle's adventures with Mattie. He loved his gifts! I also can't thank Linda enough for dropping everything and coming down to help me with Mattie. I think Linda could see that I was at my wit's end.

Mattie and I played a ton of things in his room today. He also had several visitors later in the day. Chris and Thomas from the chemistry club came to visit and helped Mattie make slime. Mattie loved it, and who knew combining glue, water, and borax together made such a fascinating substance to play with. Chris is a lovely senior at Georgetown and Mattie really loves the experiments he brings in each friday.

Last night, Brandon text messaged me. He still isn't feeling well, so today he came in to be examined. Toni and Jim, Brandon's parents came by to visit us. They gave Mattie a great gift. A remote controlled roach. In fact, Mattie put the roach on his foot, while working in his room on a craft project. I couldn't get over this pose, so I snapped a picture of it. Glue gun in one hand, roach on the foot, and the other hand is grabbing a cupcake! Thank you Toni and Jim for this great gift!

This afternoon, Jenny came up from the clinic to give me a break. I couldn't make it in the hospital without Linda, Jenny, and Jessie. The rest of the hospital could fall down, but without their social support, our world would stop. Jenny and Mattie played for about 90 minutes today. They did a lot of water play, which is right up Mattie's alley. Today the scenario was a car that was drowning in water. I did not stick around for the dialogue, but I know Jenny, Jessie, and I are on the same wavelength about the issues that Mattie is expressing and processing. I am happy Mattie had this time with Jenny. While Jenny was working with Mattie, I was sitting in the hallway catching my breath. In the hallway, I bumped into Denise, our social worker. I filled her in on today's saga, and I told her about my communication and psychosocial concerns I am having with the medical staff. Before I headed back to relieve Jenny, I bumped into Jessie. We also had a lovely chat. I really value my interactions with Jenny and Jessie. They are professional, but also very real. They understand the magnitude of all of this on Mattie, Peter, and I.

This evening, Mattie and I started building things out of popsicle sticks and cups. At which point Peter arrived from work. Peter and I strategized that I would go home tonight and Peter would go home on saturday night. I knew I had to get out of the PICU. I am tired, edgy, and fragile. My head hurts and all this stress is causing my heart to palpitate. Mattie did not want me to leave the hospital tonight, and he put up a fuss. But Peter told him that I had to go, because if he doesn't take care of me, then I won't be well enough to take care of him. He did not like the answer, but accepted it. So I can only imagine the night Peter has in store for him with Mattie. Even Jenny commented to me today that Mattie has a ton of energy. The old Mattie is slowly coming back, the only problem is he can't physically expend the energy, and so therefore, it gets channeled in talking and other activity.

Mattie's methotrexate infusion was completed last night, and now he will start to receive leucovorin. Leucovorin is a folic acid derivative and is administered at the appropriate time following methotrexate as part of a total chemotherapeutic plan, where it may "rescue" bone marrow and gastrointestinal mucosa cells from methotrexate. Now we wait until Mattie's body clears methotrexate to an appropriate blood level so we can leave the hospital. As I end tonight's blog I want to thank Karen, Lorraine, Susan, and Charlie for e-mailing me back and forth today as I was dealing with the culture results. You all kept me grounded. I also want to thank Lana and Katie P. for your willingness to donate a Wii Fit to the childlife room at the hospital. Your generosity is SO appreciated. Thank you Lana for a lovely dinner. We all loved the shrimp! Thanks for all your support.

I end tonight's posting with a mesage I received today from my friend, Charlie. Charlie wrote, "I am always impressed by your strength and your willingness to keep going but sometimes you leave me speechless. I have had one migraine in my life and I had to stop working and hide in a dark room for a couple of hours. How you managed to keep going with that is simply beyond my comprehension. You have so many really good ideas for how the hospital can help patients and family cope with cancer and other major illnesses that I really hope they can put at least some of them into practice. You certainly have raised awareness of many issues that were previously ignored or overlooked by the administration. As for discipline and boundaries versus support for Mattie; I think you've done a yeoman's job with respect to helping Mattie cope with all of this. His general attitude and willingness to participate in social functions and therapy is clearly due to the efforts of his parents. When I look at how far he's come since last fall I wonder how anyone can be critical about your efforts. I suggest that while you hear these specialists out, you also screen the comments for usefulness. Many of these people speak from the point of view of a textbook and not real life events. Definition of Yeoman's job: In modern usage the term yeoman can also be used as an adjective meaning "performed or rendered in a loyal, valiant, useful, or workmanlike manner," especially in situations that involve a great deal of effort or labor as in: "He did a yeoman job on the problem."

February 26, 2009

Thursday, February 26, 2009

Thursday, February 26, 2009

Quote of the day: "Nature speaks to us through our senses in ways that are unique to each of us. Whether it's through vision, feelings, inner impressions, insights or in other ways, we exchange energy with nature all the time. Our senses, both inner and outer provide pathways that help us to integrate and make use of it all." ~ Leslie Montana

Mattie had trouble waking up this morning. In fact, I woke him up at 10:30am, because we were scheduled to get admitted to the PICU at 11am. I quickly got Mattie dressed and gave him his oatmeal. Normally he would be upset with this rushed process, but I think he understood I was in no mood for any of this today. Mattie and I were about to walk out the door around 11am, when the phone rang. I stopped and went to answer it. It was Jeff Turner, our HEM/ONC nurse manager. He told me that he wasn't happy with the room we were assigned in the PICU, and asked if I would mind waiting until 1pm, when a better room would open up. Jeff told me he could give us room 6. I had always heard about room 6 from Brandon and his mom, but never actually stayed in it. So I told Jeff that we would wait. It was nice of him to call us and to look out for us! The beauty of room 6 is that it has a private shower (WOW!) and an anteroom. The anteroom is an interim room between the hallway and Mattie's room, and an anteroom is needed for patients in isolation, so hospital personnel can come in and get gowns and masks on. In any case, we don't need it for this purpose but for us the anteroom serves as a fabulous closet for a wheelchair, commode, and walker!

So Mattie and I waited until around 12:30pm before we left our home. In the mean time, I communicated back and forth in the morning with Laurie. Laurie is a SSSAS mom and was our point person to help us today. Laurie offered to take us to the hospital and to run errands for us today. However, I had already packed our car, but I so appreciated her genuine offer to help us. When Mattie and I arrived in the PICU, we were greeted by nurses, Jeff, and other staff. Mary, a Lombardi clinic social worker came up to find me and to invite me to today's support group meeting for HEM/ONC parents. I missed last week's meeting. Some of you may recall that I have been on a mission since August for the hospital to create such a support group. In fact, Denise our social worker told me last week, that my suggestion was finally being acted upon. So needless to say I felt compelled to go today. I told Mary I would attend the group, if I could find Linda. I was able to find Linda, and I left to go to the group. Normally I wouldn't leave Mattie right after being admitted to the hospital. But two things are apparent. I trust Linda with Mattie and secondly, today I wasn't feeling like myself. In fact, today was the first day in seven months where I actually did not think I could make it through the day, much less take this pace for several more months. It was like I was hit by a brick wall today. It was at this point, that I knew I had to remove myself from the situation. I had an intense migraine all day, actually a migraine beyond migraines, and I feel simply fatigued. The kind of fatigue where you feel parts of yourself shutting down and being unable to function.

So I went to the support group and only one other mom was in attendance. I know this other mom well, since she is the mom with the baby who I reported was on life support several months ago. We must have talked for two hours. Clearly in a support group, people come in with different issues and needs to talk, but none the less, it was a wonderful way to get out of the room, and to hear how others are doing. So I would definitely go back again. When I got back from the meeting, Mattie was working with Linda. He was having a great time as usual. He designed a "Scary Snake" house for ALL the rubber snakes he brought from home. Linda helped him wire the house with lights as well. In fact, I would say Mattie was just ON today. He was happy, engaged, and animated. Many nurses commented to me about Mattie's mood change. In fact, Debbi (our sedation nurse angel) met up with me in the hallway and commented on how far Mattie has come since the Fall. Debbi has followed Mattie's case every step of the way, in all reality, Mattie has come such a long way from October and November, when he was post-surgery and dealing with intense anxiety. I told Debbi that I was given some feedback today from a doctor that I need to set boundardies for Mattie and provide him discipline and structure. All very true, children need structure and they thrive on it, and being sick doesn't change that need, but I can assure you that it is very challenging to discipline a child the same way you would if he did not have a life threatening illness. I would hope that a doctor could appreciate this. That some priorities do change. The doctor encouraged me to take time each day for myself (he feels I must do this, which is why the boundary and discipline issue was discussed). Great suggestion! But how does this free time happen, when you have a child who relies on you? I mentioned to Mary, the social worker today, that there needs to be formal programs for children here so as a parent I would know when I could drop Mattie off and he would be engaged for a certain period of time. This type of predictability would be helpful in a time in our lives where nothing is stable or certain. I think this would be beneficial for him as well. Any case, perhaps it was my level of tiredness and sensitivity, but these comments from the doctor today were more hurtful than helpful. As I was talking with Debbi about this feedback, her response was so helpful to me. Debbi said that Mattie is doing as well as he is doing psychologically because of me. I am his stability and rock. It meant a lot to hear this, because I believe Debbi is objective enough to tell me the truth. After all I wouldn't make such a large sacrifice if I did not think it was working and ultimately benefiting Mattie.

Linda paired Mattie up with volunteers today. Normally I would be in the room with Mattie while he was with a volunteer. But not today. Today, I stayed in Mattie's room and ate lunch. I had to separate from his incredible level of energy, because as Mattie is getting stronger (thankfully!), I am getting weaker. I can't handle this level of energy from morning to midnight, stay up through the night, and then perform this same incredible human feat the next day.

I want to thank Laurie Drysdale for a wonderful lunch today. I love the Caryle Grand's mango chicken salad. The irony is Peter was at the Caryle Grand restaurant today meeting with the coordinators of Mattie's Stomp it Out for a Cure walk. I can't thank Liz (the walk chair), Ann, Alison, and Tamra enough for devoting their time to this meeting. So the salad that Laurie brought me made me feel like I was at the meeting in spirit. We also want to thank Laurie for the wonderful gifts she brought Mattie. He loves the wind up fly, the DVD, the personalized water squeeze bottle, cupcakes, cookies, and all the great snacks. I of course thank you for the chocolate. We are so thankful for your generosity and look forward to getting to know your family better.

Later in the afternoon, I joined Mattie in the playroom. Mattie for the first time asked to play with the Wii. He played a fishing game, and was catching a ton of fish. Peter would have been proud of Mattie, because Peter taught Mattie how to fish and they used to spend many a saturday morning on the Potomac river, catching and releasing fish. Mattie did so well on this game today, that he received a bronze medal for fishing! He was very pleased with himself, and I was pleased to see him using his hands and arms. Linda is contemplating getting Wii Fit for the playroom, but it is hard to track down this game! In any case, I think Mattie would actually benefit from moving his body using this technology! Basically Wii fit contains 48 fitness training related games and activities

When Peter arrived tonight, I was thrilled to see him. Peter is equally as tired, but I couldn't manage functioning today. Peter played with Mattie in the childlife playroom for several hours tonight. The playroom was open tonight until 9pm. This was wonderful, because it typically closes at 6pm. One of Linda's volunteers was able to stay late.This evening, Mattie met up with a buddy, a little boy a couple of years younger than him. But this little boy is also an only child, and for some reason they relate to each other. In fact, Mattie sent Peter back to our room to bring this little fellow a cupcake. Mattie doesn't share cupcakes for the most part, but he wanted to tonight. Mattie asked Peter to find out if the little boy could have a cupcake. Mattie did not want to offer a cupcake to his friend if he wasn't allowed to eat a cupcake. I thought that was very sensitive. Any case, the boys enjoyed cupcakes together. In fact, Mattie has enjoyed several cupcakes today and snacks. He is eating up a storm, snack wise. I highly encourage this snacking.

Dr. Toretsky did tell me today that he is very pleased with Mattie's progress. For the most part he said many kids by this point going through intense chemotherapy would be on a feeding tube. So if the cupcake diet is working, I am sticking to it. In fact, my philosophy is he can eat whatever he wants as long as he eats. Mattie did some wonderful art projects tonight with Peter and his buddy. Check them out!

Left: notice that this lovely fall picture features a cockroach besides the tree!

Right: when I asked Mattie what this picture was, perhaps fish swimming in a pond, he said "no, it was just a masterpiece."

We had a nice dinner tonight thanks to the Isaacson family! Thank you Joy for stopping by today. Sorry I missed you. I appreciate all your support, and for the chocolate cake!

As I write this posting, it is 10:45pm. Mattie completed a MTP-PE infusion, and at 10:15pm, he started his four hour methotrexate infusion. You may recall that Methotrexate is highlighter yellow in color. It is hard enough watching this hateful colored solution going into your child's body, but the fun part about all of this is collecting urine every four hours (then you get to see this lovely yellow stuff being excreted out). We will have to collect urine every four hours for the next several days until Mattie's body clears this toxic substance out of his body and has a .1 or lower level of methotrexate in his blood. Dr. Toretsky warned me today, that the next couple of weeks are going to be extremely taxing for Peter and I, because Mattie most likely will be spending a significant portion of time in the hospital. This is hard to swallow considering just how exhausted we are. I told Debbi when I saw her in the hallway, that I think osteosarcoma is by far one of the worst cancers I can imagine. It tries every fiber of your being.

I end tonight with an e-mail I received from my friend, Charlie. Charlie wrote, "I was so thrilled to read that Mattie's hearing is fine. We know how tough communication can become if you lose your hearing. So much of what we know, we absorb unconsciously through our senses and loss of any of them makes everything more difficult. I am so glad Mattie will not have to deal with that. It was nice to see Mattie enjoying himself with the wheelchair; he turned something many would see as a barrier into something positive. It is wonderful how through play children can cope with so many things like the need to take risks and to do unpleasant things. Once again, Mattie leads us all to understand that as long as you have your "connections" (you and Pete), it doesn't matter where you are physically, as long as you are loved and supported, you are safe. It is very clear that while Mattie cannot voice this he knows it instinctively, a tribute to you and Pete."

February 25, 2009

Wednesday, February 25, 2009

Wednesday, February 25, 2009

Quote of the day: "If there must be trouble let it be in my day, that my child may have peace." ~ Thomas Paine

Mattie had a good night of sleep, of course sleeping through the night is a thing of the past, especially when on IV hydration at night! Mattie had a hard time waking up this morning, so much so that I got up before him. When he discovered I wasn't in his room, he called for me and asked that I come back and cuddle with him before he got out of bed. So back into bed I went! Since Mattie was a baby, I have always enjoyed rubbing my face against Mattie's. There is something so sweet and precious about this "baby" type of skin against your own. It is these special moments that I love capturing, and it is hard to have these cuddly times this year, while living inside a fish bowl. While I was next to Mattie this morning, I felt the need to break the news to him that he could potentially be headed back to the PICU on thursday. I wasn't sure how he was going to handle it, but I explained why going back on thursday would be a good thing. That would mean that his body is strong enough to continue the fight against the bone bugs. Of course that is our ultimate goal, to wipe out all bone bugs. He is very cognizant of that goal, and basically was fine with going back on thursday if he had to. In a way I was surprised by this reaction. I know Peter and I are not fine about going back, but I think Mattie has bought into the healing process, and also understands that Peter and I will always be with him. No matter what. I think that on some level this is very comforting, so it all reality it doesn't matter where we fight the bone bugs, as long as we are together on this mission.

Mattie and I headed to the hospital at 12:30pm. We were making good timing, until we had to deal with parking at the hospital. Parking is a true experience at Georgetown. We tried one parking lot, but it was completely full, so we headed to the next one. We lucked out there! I continue to be amazed how few disabled parking spaces there are at a hospital. Trying to unload Mattie's wheelchair and get him into it safely in one of those tiny parking spaces is a feat! I wheeled Mattie into the Lombardi Center, where he met up with Jenny and Jessie. They had all sorts of projects ready for him. Mattie had his vitals taken and his blood drawn to determine his Absolute Neutrophil Count (as a reminder his ANC had to be 1500 or greater to qualify for chemo on thursday). Mattie was thrilled that the clinic room he was assigned to was his "cockroach" room. So I pulled out the camera, so you could see what his roach looks like on the ceiling in the room. Enjoy! I am happy it is in the clinic rather than in our home.

Mattie spent some time with Jenny and Jessie, but pretty soon there after, we met up with Linda and headed over to his audiology appointment for an audiogram. As many of you will recall, when Mattie had his second audiogram in December, I was very upset. I was upset because the audiologist reported to me a hearing loss in both of Mattie's ears, with the right ear being more significant. In addition, at that time, she identified the fact that Mattie was having trouble hearing certain tones, high pitched, to be specific. So today, I had no idea what to expect. To me Mattie's hearing hasn't significantly changed when I deal with him on a daily basis, but I have learned to understand that you can't take things on face value anymore. Linda and I accompanied Mattie through his testing. A portion of the hearing test is done in a sound proof booth. It is like walking into a bank vault. I happen to love this room, and wish I could take it with me to the PICU. After the testing was over, of which Mattie was very compliant (he actually finds the process fun!), I met with the doctor, while Mattie waited with Linda. Linda brought a whole cart of activities for Mattie, of all his favorite things to do! Linda is a God sent. Anycase, onto the exciting news. Mattie's hearing is great. It is at the same level it was before all the chemo started in August. In fact, it appears that there is NO change in his hearing. I asked the doctor how she explains December's results. She said that he could have had fluid or some sort of pressure in his ears that affected the testing. But to her knowledge the chemo so far does not seem to be impacting his hearing. I practically wanted to hug the doctor, but did not. This was the one piece of good news we have had in a long time!

Mattie, Linda, and myself headed back to the clinic to find out Mattie's blood test results. On our way, we wheel through a corridor that has a pretty steep ramp. Mattie literally rode a rollercoaster today. He went on top of the ramp, and wanted to be let go, so he could fly down the ramp in his wheelchair. Normally I would say NO to this, but he really wanted to do this, so Linda and I let him do it. He loved it so much, that when he got back into the clinic, he had Jenny and Jessie come out and see him do this again. Linda snapped a picture of Jenny and I running next to Mattie's wheelchair as it was heading down the ramp. Mattie had a great time today doing this, and his laughter rings in my ears even tonight as I write this.

Mattie enjoyed his time with all his "ladies" today. Mattie had a good time in the clinic, and continued playing with his made up character, Pinky. You may recall, that Pinky is quite a handful. She can be very defiant toward her parents, and she turns out to be quite a risk taker. Mattie continued his play scenario with Jenny and Jessie. Almost as if he picked up where he left off on Monday, except this time the location of where Pinky and her family lived changed. This time they lived near an abandoned airport, not a large trash shoot. I find these settings fascinating. Each place involves risks, big ones actually. On Monday, Pinky kept falling down the trash shoot, and today, Pinky kept visiting this abandoned airport, where she would play on planes that were literally falling apart while she was flying them. In today's play Mattie was VERY focused on Pinky taking risks. He wanted her to continue to take them, over and over again, even though he knew that the plane he was putting Pinky on was dangerous. But he kept insisting and really wouldn't budge from this scenario, despite our best efforts to add other components or themes into the play. We did not have as long to play today, so we weren't able to work through some of what he presented. But I have been thinking about it all afternoon. Part of me thinks that Mattie feels similar to Pinky. That each day he takes risks (scans, tests, chemo, living in a PICU, etc...), and for him these risks are necessary and important. You can't avoid these risks, and instead you have to just accept them, work with them, and continue to take them on. So the fact that he wanted Pinky to keep confronting the risks of flying an old and abandoned plane, when taken in this context, is not that unusual, in fact it makes sense. I did not see it at the time, but I am appreciating his insistence with the direction of today's play.

Mattie and I headed home this afternoon, and we played with his legos, had a visit from JJ (our resident Jack Russell Terrier), and then watched a few Scooby Doo episodes together. When Peter came home this evening, he had a gift with him. My lifetime friend from NY, Karen, mailed us a package to Peter's business address. She promised me chocolate one night if I actually went to sleep and let some things go. Apparently I did a good job, and today I was rewarded with NY fudge. Mattie also loves his hologram book! Thanks for these special treats. We had a nice dinner this evening thanks to the Bires family. Thank you for all the goodies too! After dinner, I baked a load of cupcakes to take to the hospital tomorrow. Mattie has gained some weight back and I attribute it to eating cupcakes. He is eating them like they are going out of style, and frankly I don't care what he eats, as long as he eats something. I have yet to pack for tomorrow's hospital stay, but I have that ahead of me this evening.

I just can't get over the fact that we left the hospital on sunday, and now are headed back for another four or five days with Methotrexate. The plan is that after Methotrexate, Mattie will be allowed home for a few days, and then on March 5, he will come back in for cisplatin and doxorubicin. I am told that Mattie most likely will become sick from that round, develop neutropenia, and then head back to the hospital during our two weeks of "off" time. So when you look at the next few weeks in total, I am wiped out with the thought. I can't really describe the level of fatigue Peter and I are living with, because it is like no other I have ever contended with. Unfortunately when you are this tired, nothing seems, feels, or is right in the world.

We want to thank Joan Holden, Mattie's head of school, for the beautiful handwritten letter of support she wrote to Mattie. It means a great deal to all of us. I end tonight with a message sent to me by my friend Charlie. Charlie wrote, "Once again the blog brings home to us all that time is one of the most precious gifts any of us can give another. It was so kind of Ann to give her time to Mattie so that you and Pete could reconnect with each other. The lovely thing is that she was successful in making Mattie feel as though he was the center of attention and the reason for her visit and not the desire to allow you and Pete some free time. That is a real talent. Mattie clearly enjoyed his time with her and that is another indication that when the time is right Mattie will be able to reconnect with others in positive ways."

February 24, 2009

Tuesday, February 24, 2009

Tuesday, February 24, 2008

Quote of the day:

"There is a crack in everything, that's how the light gets in." ~ Leonard Cohen

Monday night was uneventful for the most part. Mattie got up a few times during the night to go to the bathroom, since his home IV hydration started up again. The funny part is when we took Mattie to bed last night, he did not want to sleep in his own bed, he wanted to sleep on the aeromattress on the floor in his room. He asked if we could switch beds. So I slept in his bed, and he slept in the one I normally sleep in. That was fine by me! I was up a few times last night, and I could tell so was Peter. He was downstairs, the lights were on and so forth. He fell asleep downstairs doing work. At 5am, he was still down there, but I figured waking him up to go to sleep was pointless. So I let him stay there. When I officially got up this morning, I headed down the stairs, but I did not see Peter's computer, so I figured he was at work. Then I heard a rustling in the kitchen. I panicked because I did not know what the sound was. Mind you, I am tired and not always thinking clearly these days. I slowly approached the kitchen, and there was Peter on a conference call in the kitchen. I think we scared each other at the same time!

Peter has been under the weather for a few days, and decided to work from home today. Which was a good plan, because it serves no purpose for him to get sick. He is an important part of our equation. Ann visited us today at 11am, and I convinced Peter to leave the house and walk with me and have lunch together. Ann was a sight for sore eyes, she is like our 911. Peter and I really needed to regroup today, and we can't do that at home. Funny how our home has become anything but relaxing for us. Illness has a way of changing things profoundly. The beauty of Ann, is she comes in with a smile and high energy. Just what Mattie needs. She brought all sorts of activities that instantly engaged Mattie. Mattie was thrilled to say good-bye to Peter and I, and I really think Mattie feels Ann is his friend, and she comes solely to see him. It is very cute. Ann came with snacks of all kinds for Mattie, and coffee for Peter.

Peter and I took a walk to Washington Harbor, and walked along the Potomac River. We then ate by the water. Today was frigid, but at least the sun was out. But frankly it did not matter. You accept freedom in whatever form it comes in. Peter and I had a chance to chat over lunch and I had a chance to hear about how work is going for Peter and to discuss Mattie's upcoming walk on May 9th. Thankfully we have a whole team of wonderful members of Team Mattie working diligently on walk preparations! Peter was reflecting on some things, and as he spoke, I landed up in tears. He captured the essence of what we are going through beautifully! Ann, gave us a special gift today of three hours to ourselves!

When we returned home, Mattie was having a ball. Mattie did all sorts of activities such as digging for real gold. Ann captured Mattie in motion today. Some of the pictures are classic Mattie. I particularly love the one of Mattie washing his toy cars with one hand and eating a donut in the other!

Left: Mattie cleaning his gold pieces that he dug out of a big clay block!
Right: Mattie multi-tasking! Cars in one hand and a donut in the other.

Left: You can see all the cars Mattie washed this afternoon! He was BUSY!

Thank you Ann for spending part of your day with us. It made a big difference. After Ann left, I decided to do more laundry in order to prepare for heading back to the hospital potentially on thursday.

This evening, Peter and Mattie were working very hard on their lego addition to Mattie's village. It is coming along nicely. It is a beautiful structure. I took some pictures of the work in progress. Mattie wanted everyone to share in his excitement.

JP, our neighbor and JJ's owner, came to visit us today, and brought Mattie his favorite pizza and pasta. Thanks JP for thinking of Mattie and us. While JP was visiting he commented to me about Mattie's Mr. Sun painting. JP is an International Art Dealer and he told me that Mattie's work reminded him of Julian Schnabel's works. Especially because of the vibrant colors and the way Mattie signed his name on the painting. So I googled Schnabel tonight and I concur with JP's assessment. I attached the link below, so you could see some of Schnabel's paintings. When Mattie signed his name to Mr. Sun, he integrated his signature into the painting, just like Schnabel integrates words into his paintings. Interesting!

As wednesday approaches, we are heading back to the hospital tomorrow afternoon for a blood test to determine Mattie's blood count. He needs an ANC of at least 1500 to qualify for chemo on thursday. After his blood test, Mattie has an audiogram. Linda is coming with me to the audiogram, in case, like the last time, the audiologist wants to talk with me afterward. Every time Mattie takes one of these tests or scans, you have your heart in your mouth, not certain what they are going to find.

We want to thank the Katcher family for a wonderful dinner tonight from California Pizza Kitchen. Your support is greatly appreciated! I end tonight with several e-mail messages I received today. The first is from my friend, Charlie. Charlie wrote, "I was fascinated by Mattie's play therapy session. I think it started out as an art project but it seems to have morphed into something else entirely. It is wonderful that Jessie and Jenny gave him space to explore his negative feelings and that you were able to come in and help him resolve what was going on in the session. Mattie knows that his behavior is not what would normally be acceptable but of course the situation is not normal. He is angry and resentful (who would not be?) at the people who are doing things that hurt him and yet he knows they are trying to help. He has all these conflicting feelings and no way to resolve them except through action. Your intervention was timely and perfect, helping Mattie to see that the negative behavior will hurt the doer as much as the people who are subject to it. While this may not change his behavior very much during treatments, it tells you that he will be willing to work on changing it once the treatments are completed. Hang in there, Mattie is telling you that the sun and positive feelings he painted still remain within him, even on the most cloudy of days."

The second e-mail is from my friend Jen. I met Jen at Boston College while we were pursuing our master's degree in Biology. Jen reads our blog every day, and is supporting us from afar. Thanks Jen for the lovely poem on hope!

Hope ~ Emily Dickinson

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

The last message was a posting from that Charlie sent me today. I liked the sentiment so much, I am posting it here!

Inspiration of the Day: It has become a beloved ritual at Dana-Farber's Cancer Institute, where they are building a new facility. Every day, children who come to the clinic write their names on sheets of paper and tape them to the windows of the walkway for ironworkers to see. And, every day, the ironworkers paint the names onto I-beams and hoist them into place as they add floors to the new 14-story Yawkey Center for Cancer Care. "It's fabulous," said 18-month-old Kristen Hoenshell's mother, Elizabeth, as she held her daughter and marveled at the rainbow of names. "It's just a simple little act that means so much."
Leaving your mark is indeed important for children with cancer and their family. Mattie has had the opportunity to do this with two ceiling tiles in the Lombardi Clinic and with his footprint on the pediatric welcome sign that will be displayed on the fifth floor of the Comprehensive Cancer Center. Somehow these marks signify a moment in time, because you don't want your child or his/her presence to ever be forgotten nor do you want anyone to forget the struggle and journey he/she had to undertake to try to become whole again.

February 23, 2009

Monday, February 23, 2009

Monday, February 23, 2009

Quote of the day: "Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom." ~ Marcel Proust

Sunday night, Mattie went to bed early. It was unheard of, by 7:30pm he was in bed and sleeping. So I decided at 9:30pm that I too would go to bed. But I had a lot on my mind, and I just was unable to sleep. I tossed back and forth, got up to watch TV, but nothing seemed to help. I eventually went to bed after 1am. When I finally fell asleep, it did not last long, because Mattie was having a bad dream. He sat up and I asked him if he was okay. He said, "no I am not." So I got up off the mattress, which is on the floor in his room, to come sit with him. He eventually went back to bed.

When Mattie woke up this morning I prepared him for his long day in the clinic. He wasn't pleased by that notion, but I told him he did not have to sleep in the hospital at least and I also told him he would be seeing Jenny and Jessie. That perked him up. Mattie cooperated with getting himself dressed and cleaned up, which doesn't always happen. Mattie still needs a great deal of help with activities of daily living. He can't dress himself, go to the bathroom unassisted, and so forth.

We arrived in clinic around 11:30am and did not get home until 5pm. It was a long day, but Jenny and Jessie did a phenomenal job keeping Mattie busy. Mattie had his vitals taken and his blood work. His ANC is 400 today, so it is climbing. Mattie received MTP-PE with no trouble, and he also received Granulocyte colony-stimulating factor (GCSF) to boost the production of white blood cells. In the midst of all these administrations, I had the opportunity to discuss Mattie's treatment with Dr. Synder. I talked through my concerns with her about the timing of Mattie's next chemo, Methotrexate. Dr. Toretsky is recommending that we start chemo on thursday of this week, if Mattie's counts bounce back up. Dr. Toretsky says that research shows a strong correlation between adhering to an intense chemo regimen and longer survival rates. I am completely torn with this decision. My mental health professional side feels that it is important to wait until monday. Mattie needs time at home, time to feel somewhat normal, and all of us need time to regroup and get ready for the next battle. We also do not like being in the hospital over the weekend when Linda, Jenny, and Jessie are not around. Mattie really counts on them. However, the mom side of me looks at this differently. Once you hear that there could be a potential benefit to your child by starting chemo sooner, it is hard to shake that news. It has been spinning around in my head all night and day. I never want to look back on this cancer journey with regret. We have tried to make sound and educated decisions every step of the way. Though it seems illogical that three days will make that big of a difference, you lose some perspective and logic when living this process. All you can really hear as a parent is that doing chemo sooner could make a difference. How do you tune out such information? Well I can't!

So after talking with Dr. Synder, and reading what Dr. Toretsky sent me, I told Peter I feel compelled to start Methotrexate on thursday if Mattie meets his counts. Mattie returns to the hospital for an audiogram on wednesday, and we will stop by the clinic first to check his blood counts. If his ANC is 1500 or higher, then we know that he qualifies for Methotrexate on thursday. As Dr. Synder explained, some cancers are very aggressive, like Mattie's, and the literature does indicate that bombing the body out with chemotherapy in very close intervals can give a patient a longer survival rate. Do I actually believe this? I don't know, but am I willing to try our luck and find out, no! So as Dr. Synder says, Mattie's body will dictate the next steps. If his body is ready for thursday, we will proceed.

While I was chatting with Dr. Synder, Mattie was engaged in a very creative and lively play scenario with Jenny. In fact, Jenny and Mattie played very intensely for three + hours. Jenny did not skip a beat, or tire out. Jenny and Jessie found an enormous cardboard box for Mattie, and so today, he created a large trash shoot out of it. In addition, he created a little basket attached to a string, that could be sent down the trash shoot, almost like a bucket in a well. Throughout their play, I was overhearing bits and pieces of it. It involved a family which consisted of a mom, dad, son, and a daughter. The daughter's name was Pinky. Pinky was a very challenging child. She had many oppositional defiant issues (frequent temper tantrums, excessive arguing with adults, active defiance and refusal to comply with adult requests and rules, deliberate attempts to annoy or upset people, blaming others for his or her mistakes or misbehavior, often being touchy or easily annoyed by others, frequent anger and resentment,
mean and hateful talking when upset). Mind you Pinky's character was created by Mattie, and Jenny was playing along. At one point, Mattie had Jenny playing about 10 different characters in the story. It was wonderful to listen to, and Jenny rose to the challenge of playing all these different characters. The family tried everything to get Pinky to be a productive and happy part of the family, but Pinky wouldn't comply and just got more difficult. Pinky loved jumping into the basket and sliding down the trash shoot, just to see her family worry and get upset. At one point, Mattie, with the help of Jessie, designed a barbed wire bedroom for Pinky. The family hired all sorts of nannies and helpers to work on the family's problems and to give the parents a break with child rearing. I took a picture of one of the nannies. Her name was Nanny Nothing. Nanny Nothing was a no nonsense kind of gal, but Pinky landed up cutting off her foot. Pinky spent her days getting in trouble. Needless to say I found the aggressive theme of today's play fascinating. At one point, Mattie was ready to move away from playing with Pinky and this whole family scenario was unresolved. Somehow, though Jenny and I did not discuss this, both of us felt like this wasn't a good way to end the story.

At this point, I joined Jenny, Jessie, and Mattie while they were playing. I created the character, Dr. Paintbrush. I figured this family needed outside intervention, and they tried everything else, and an outside perspecive was needed. So Dr. Paintbrush spoke with Pinky. Together they set some ground rules about what type of behavior was expected in her household, and that she could turn to a diary or log when she felt herself getting frustrated, angry, or unhappy (Pinky did like to write and liked school). Dr. Paintbrush also told Pinky that she wanted to visit Pinky's home. So the next day Dr. Paintbrush visits the home and sees that Pinky is living in a prison like environment (because the parents were at their wits end) and also observed Pinky getting herself into trouble right in front of the doctor. At which point, Mattie takes over the role of Dr. Paintbrush. Dr. Paintbrush starts acting out, hitting everyone in the family, and talking back. Jenny, Jessie, and I were trying to figure out what to do next. Then it hit me. I took on the role of Pinky. Pinky turns to Dr. Paintbrush and says something like, "is this how I look when I act out?" Whether Mattie realizes it or not, he was showing Pinky how bad her behavior was, and how ridiculous it was, and that she could control how she reacts to things. It was in that instance that the play scenario changed. It changed for the better and for the healthy. Pinky did not want to look or act like what she saw Dr. Paintbrush doing. The family started listening to each other, and Dr. Paintbrush threw out the barbed wired bed and all the other forms of punishment used on Pinky. I personally felt like today's play was VERY therapeutic. I think we showed Mattie that no matter how bad things get within a family for various reasons, families do not give up on each other. Brava Jenny and Jessie!
Since we were in the clinic for some time today, Mattie had a visit from Linda, Jeff (our HEM/ONC nurse manager), Toby (the PICU nurse manager), Meg (Linda's intern), and Denise (Mattie's social worker). Mattie also worked with Jessie on finding the right place in the clinic to hang up the huge cockroach ceiling tile he painted. He was thrilled. He now has two ceiling tiles in the clinic. He has left his mark! At around 4:30pm, we packed up for home. We got on the hospital elevator to go to the parking garage. All the elevators for people with disabilities were not working, and we had no way to get to the garage. So I went back into the hospital to report the problem, which they knew about, but there is no one on campus who can fix this problem. So literally I had to wheel Mattie down seven floors within the parking garage, making sure we did not get hit by a car on each ramp. It wasn't the best ending of the day.
When we got home, Mattie and I played a Scooby Doo DVD game, and then Peter came home earlier today. Peter realizes I am wiped out and wanted to help out tonight, though he is just as tired. At the moment, Mattie and Peter and building a lego set, that will be added to the train village. We want to thank the Parker family for a lovely dinner and we love the St. Patrick's day hat! Mattie will wear his with pride, and I did not know that you could get pinched on St. Patrick's day if you don't wear green!

As I sign off for the night, I want to share three e-mails with you. The first one is from my friend, Charlie. Charlie wrote, "So glad to hear that you got to go home even though challenges clearly await. It sounds like Mattie had a good, if exhausting day, getting to visit with people (and animals) he enjoys. It was lovely that Louise was able to come and entertain Mattie and give you some time with Pete even if you were too tired to really enjoy it. I know you are not looking forward to your visit to the hospital on Monday and Thursday for the infusions but at least you will get to leave at the end of the day and go home. I do hope Mattie feels well enough between those days to see his friends and enjoy being with them. As for the next round of chemo, I find it hard to believe that Thursday versus Monday will make that much difference and there is also the issue of Mattie's attitude toward it all. I believe the better he feels the more efficient his body is at fighting the disease. However, whatever decision you make will be the "right" one-have faith in your "mom" instincts."

The second e-mail is from Julia (a friend and RCC mom). Julia and her daughter Kate (who was in Mattie's first preschool class at RCC) came to visit us on sunday at the hospital. Unfortunately we were discharged from the hospital before we actually got to see them. Julia wrote, "Kate will show you her new haircut! She chopped 10 inches for Locks of Love. She was hoping she could hand her hair directly over to Mattie." I thought this was so sweet and touching that a friend would want to give her hair to Mattie!

The last e-mail comes from Debbie Pollak. Debbie is Mattie's art teacher at SSSAS. Debbie sent me a message with a comment she would write if she was evaluating Mattie as a current student in her class. Debbie wrote, "Mattie has the soul of an artist. He has a strong self-image that spues forth like a volcano when he has paints and a brush in his hand. Bright, bold color choices indicate his inner fortitude that could be envied by even the most powerful person in the world. His images are clear, well defined, and, meaningful. Mattie is happy when he is creating art which is evident by the sound of his precious laughter and the brilliant twinkling in his eyes. His work leaves me speechless, mystified and gloriously happy on the inside."

February 22, 2009

Sunday, February 22, 2009

Sunday, February 22, 2009

Quote of the day (Thanks Daddy!): "The great are simply those who have risen to meet their destiny. Everyone has a destiny infinitely richer than they know." ~ Albert Einstein.

Mattie and I had a peaceful night of sleep, despite being in the PICU. I am just so exhausted now, that I can fall alseep anywhere and in any position. I learned early on this morning that Mattie's Absolute Neutrophil Count jumped from 16 (yesterday) to 280 today. I had a feeling that this would qualify Mattie to be discharged from the hospital. I met with Dr. Abu-Ghosh to discuss this. Just so you know, Dr. Abu-Ghosh is one of the doctors in the Hem/Onc practice and she is also Brandon's doctor. Dr. Abu-Ghosh gave me a choice, either Mattie could go home today, or he could stay through monday, and leave after his MTP-PE administration. It did not even take me a minute to make this decision, I elected to go home. She was fine with this choice, and she also understood my request to postpone Mattie's Methotrexate administration to monday, March 2. There are two reasons for this decision. The obvious of course, we are exhausted, and Mattie needs the time to spend at home and in a more normal environment for a week. But also, it is much easier to start chemo on a monday, rather than midweek (right now Mattie's counts are not high enough to even qualify for chemo, but the thinking is that by thursday, his counts will be fine and could technically starte chemo). It is very difficult for Mattie to be in the hospital over the weekend. He gets bored, feels cooped up, and acts more like a child who is sick on the weekends. During the week, Mattie has access to his "ladies" and to me they are part of the healing process. Curing cancer means so much more than pumping chemo through someone's veins. It is the total buy into the process, emotionally, psychologically, and spiritually. Linda, Jenny, Jessie, and Anna help us achieve this holistic balance. We would be lost without them!

I called Peter at home today, and told him that I was going to start packing up Mattie's room. The pack up today was painful. After 11 days in the hospital, we accumulated a ton of things. Why? Mattie has projects and bits and pieces of things everywhere in the room. Despite my best efforts to organize things, it can get out of hand quickly. So literally it took me over two hours to pack and sort things in Mattie's room. I fortunately was able to do a lot of it while he was still sleeping. When he woke up, Mattie was thrilled to hear that he could go home. I haven't broken it to him that he is headed to Georgetown on monday for blood work and MTP-PE in the clinic. He also has an audiogram (hearing test) on wednesday (lovely, I can't wait to hear the results to this!), and then returns again on thursday to the clinic for more blood work and an MTP-PE administration. Because of Mattie's bad reaction (intense shivers and pain) to MTP-PE last week, we will be spending longer in the clinic to assure that Mattie doesn't have such a reaction. So this puts us in clinic on monday and thursday for about six hours each day. So I am hoping I am impressing upon you that a "break" is NOT really a break from the hospital.

When Peter got to the hospital this afternoon, he did several trips down to our car for us and then we were on our way home. You had to see us moving out. Mattie was in his wheelchair and holding onto his cupcakes for dear life. That was his responsibility. It was very cute. When we got home, we unpacked and Peter and Mattie started working on a wonderful lego set that Peter bought Mattie. Mattie was very excited, and I continue to be in amazement with how Mattie understands legos and building. You can show Mattie how to put a complex structure together once from a plan. Then literally you could take the structure apart, and he is able to reassemble it without the plan. Actually he has always been able to do this, when Mattie was two years old, he was using a screwdriver, and taking his toy cars apart, but ironically, he would then put them back together afterward.

After I unpacked, I took a second shower for the day. There is something about showering at the hospital, I just don't feel clean. So it was lovely to have a clean shower with water pressure! I then decided to send an e-mail to Mattie's doctors alerting them to the fact that we were out of the hospital and that we decided to start chemo on March 2. One of Mattie's doctor responded back right away and told me he would prefer Mattie start chemo this thursday if his counts are back. He cited some research to the benefits of attaching Mattie's cancer aggressively and intensively. Though I appreciate the research, does the research really feel as if three days (thursday versus monday administration) will make all the difference in outcome? I don't know! I wrote back to the doctor and told him that I strongly feel that March 2 is better for us, but of course in the back of my mind I hear a voice (okay NOT LITERALLY) saying... we have to TREAT THIS CANCER AGGRESSIVELY! I want NO regrets.

At 5:30am, I received an e-mail from Tamra (an upper school mom at SSSAS). Her dog woke her up barking, and Mattie woke me up to use the bathroom. So we were exchanging e-mails at that hour. Tamra offered to have Louise come over this afternoon to play with Mattie. So Louise (a SSSAS senior) came over to play with Mattie at 4:30pm. Peter and I went out for an early dinner, and it was nice to get out, but I did not feel like talking much. I am just too tired and stressed out, and Peter unfortunately knows all my many moods, and was very supportive. When we got back, Louise and Mattie were having a good time together. Apparently Mattie, Louise, and Louise's sister, Meredith have created a "Steve Irwin" kind of television show about the amazing creature entitled, Matticus Brownus! The girls play the narrator and film crew, and Mattie is obviously the famous Matticus Brownus. They create all sorts of stories and adventures! I think we may have a children's book in the making here. I love how creative they are together. Louise made smores (without the chocolate) for Mattie today. Mattie loves marshmellows, so this should be a hit. Mattie also loves the flashlights Louise gave him that require no batteries. He loved using them in his tipi this evening! Thanks Louise for giving Peter and I a break.

Mattie also had a visit from JJ tonight. JJ missed Mattie while he was in the hospital, and JP (JJ's owner) just got back from a trip to Spain. JP brought Mattie back a wonderful bull made out of mosaics to match the matador piggy bank that he previous gave Mattie. Mattie also opened some packages that came in the mail. Thank you Brian Boru (our feline friend), for the Scooby Doo book and wonderful animals to play with. We want to thank Honey for the wonderful rainforest puzzle. Mattie can't wait to assemble it! Thanks Janie for the great book and balls, and we will be sure to donate the hand knit hats to Georgetown's hospital. They are lovely, and will make some children very happy! Thanks Susan D. (Mattie's school counselor) for the hysterical valentine's day card. It was right up a six year old boy's alley! Mattie's former preschool teacher, Marliyn, sent Mattie a wonderful game she created. She stuck sunflower seeds in a big plastic bottle, and stuck tiny objects in the seeds, and Mattie has to shake the bottle to find all the pieces. Mattie calls this game, "shake and find." Very clever and Mattie looks forward to making more with Marilyn! Mattie also loves the Hawaiian shirt his Uncle Chris sent him from his trip to Hawaii. Makes you want spring and summer to be here now! Mattie also loved the adorable Lightning McQueen cookie his grandma and granddad sent him from Boston!

I can't believe I am writing tonight's blog from home. I did not expect to see home for a couple of days. Mattie surprised us all today with his counts. Way to go Mattie! Peter put Mattie to sleep a few minutes ago (7:30pm), which is unheard of, but Mattie was exhausted. I think it is the excitement of being home and packing up from the hospital, which was very tiring. I have to remind myself that Mattie's counts are still not strong, and therefore, we do need to be careful with his energy level and activities. I end tonight's blog with two e-mails I received today. The first one is from my friend, Charlie. Charlie wrote, "This is clearly a tough weekend. Mattie is well enough to do things but not well enough to be at home and the usual distractions are not available (i.e. the playroom). It seems as though they need to find a way to make some space or some games and crafts available on the weekend for children since illness does not confine itself to weekdays. I can understand Mattie's desire to be home, because although the house is confining it is not nearly as restrictive as the hospital. I really hope his numbers come up soon so that the treatment can continue and all of you can get a much needed break from the hospital (even though being home is its own kind of challenge)." I just wanted to clarify that we do have access to a childlife closet filled with toys and videos over the weekend, and Linda usually leaves us with activities to do as well, but it is just not the same without Linda and the interns around.

The second e-mail is from one of Peter's colleagues at work. Pam wrote, "A classmate sent this along - - and made me think of how you, Vicki, and Mattie have risen to the incredible challenges you are facing. I just had never thought of you guys as coffee beans! I hope you enjoy the story of The Carrot, The Egg, A Cup of Coffee!"

A carrot, an egg, and a cup of coffee...You will never look at a cup of coffee the same way again.

A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved, a new one arose.

Her mother took her to the kitchen. She filled three pots with water and placed each on a high fire. Soon the pots came to boil. In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil; without saying a word.

In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl.

Then she ladled the coffee out and placed it in a bowl.

Turning to her daughter, she asked, "Tell me what you see."

"Carrots, eggs, and coffee," she replied.

Her mother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The mother then asked the daughter to take an egg and break it. After pulling off the shell, she observed the hardboiled egg.

Finally, the mother asked the daughter to sip the coffee. The daughter smiled as she tasted its rich aroma. The daughter then asked, "What does it mean, mother?"

Her mother explained that each of these objects had faced the same adversity: boiling water. Each reacted differently. The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.

"Which are you?" she asked her daughter. "When adversity knocks on your door, how do you respond? Are you a carrot, an egg or a coffee bean?

Think of this: Which am I? Am I the carrot that seems strong, but with pain and adversity do I wilt and become soft and lose my strength?

Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get better and change the situation around you. When the hour is the darkest and trials are their greatest, do you elevate yourself to another level? How do you handle adversity? Are you a carrot, an egg or a coffee bean?