Saturday, December 13, 2008

Saturday, December 13, 2008

Quote of the day (thanks Rich!): “Inward calm cannot be maintained unless physical strength is constantly and intelligently replenished.” ~ Buddhist writing

Rich wrote, "You, Peter, and the medical team are doing all you can, a journey of sorts, to restore each of these in Mattie, and in turn, yourselves..."

Friday night I came home to rest and get some peace and quiet. Well as soon as I walked into our front door, I could hear our new neighbors were having a HUGE party. It sounded like there were like 50 people in their home. The music was blaring, the talking was loud, and they were celebrating both inside and outside. I could hear that they were celebrating a birthday, I think the happy birthday song gave it away. Well by 1am, I couldn't take it anymore. I want to be neighborly and so forth, but OH MY GOD! Can't I get peace and quiet anywhere?! In my next life I am living on a secluded island away from noise, hospitals, illness, and anything that brings about sadness. If you know of such a place now, let me know ASAP! Back to my story, so at 1am I called our front desk of our complex and complained. By 1:15am, all the noise stopped. Hallelujah!

Before I went to bed last night, I set my alarm to wake up by 9am today. I knew if I did not, I would probably sleep the entire day away. When I got up this morning, I called Peter. Peter told me that Mattie was up several times on friday night. So I immediately understood that Peter was probably wiped out! Then Peter told me that Mattie's platelet level was low and he needed a platelet transfusion. When I heard this, I asked Peter whether the medical staff were planning on premedicating Mattie before this happened. If you recall, the last time Mattie received platelets was a disaster. In fact it was downright frightening. My friend Margaret was with me, and she is the one who noticed Mattie was developing apricot sized welts. Mattie basically had a bad reaction to the platelets. He turned white as a ghost, developed welts, and then literally looked like he passed out. I was besides myself. They immediately stopped the transfusion and then gave Mattie a steroid, Solumedrol, and an antihistamine, Atarax. So today, I asked Peter if the medical staff was planning on giving Mattie Solumedrol and Atarax before the infusion. I was curious if they even documented in his chart that these medicines would need to be given prior to administration of platelets. It did not seem like they were aware of this, but by the time Peter finished with them, they pulled up Mattie's chart and indeed saw we were right. My goodness! What if Peter and I weren't there?! What would have happened? All I know is Peter and I are becoming medical experts as it comes to Mattie.

I stayed away from the hospital most of the day which was really needed. Ann invited me today to her mom's 80th birthday party. Ann told me about this party two weeks ago, and in so many ways Ann has become family to me, and I did not want to miss this important moment. I am so glad I went. There was something very special to spend the day in a home. Ann's house was decorated beautifully for Christmas and the house was full of life and excitement. There was talking, laughing, good food, children laughing and having a good time. This is so different from my hospital existence. It was almost like a surreal experience. When I arrived at Ann's, Bob greeted me at the door. I wonder if Bob gets as confused as I do. After all Bob is our friend but also Mattie's surgeon, and these are two very different roles to serve. Bob does both extremely well, but never in my life have I known my doctor on a personal level like we know Bob. Ann then introduced me to her mom, Mary. I had actually met Mary last year at SSSAS's Lesson and Carols Holiday event, and I enjoyed talking to her then as well. Mary and I have something in common. Sons with cancer. Mary lost her son to cancer last year after a courageous and herculean fight. When I introduced myself to Mary, I told her that I was a friend of her daughter's and that our children go to the same school. Then I mentioned I was Mattie's mom. She then instantaneously knew who I was. She told me that she and her husband pray for Mattie each day. She then told me how difficult it is to see your child sick and how much she misses her son. She continued to tell me how she was dealing with this, and even though it is a year later, she still profoundly misses her son. Mary got to me today. I could totally relate to what she was telling me, and I landed up crying. I felt like she really got it! She knew what I was feeling, because she has and continues to feel this profound pain and loss. In all reality Mary was marvelous therapy for me. I felt understood, and not judged for any of my feelings. I could also understand that on some level she felt guilty for having and celebrating a birthday when her son died too young. However, I wanted this day to be happy for Mary, and I did not want to be the center of attention with my crying. I wanted it to be Mary's day, and if I kept on crying that wasn't going to happen. So I stepped back and my friend, Jane (a fellow RCC mom) waved me over, and we started talking. Then Tanja (another RCC and SSSAS mom) came over to join us. I was still in a fragile state by that time, and I landed up crying more, and Tanja just hugged me and said nothing. Which in all reality is the best thing one can do when you are hysterical. Tanja and Jane kept talking with me, and then Tanja sat me down and she massaged my neck. That helped tremendously, and I could feel the tension subsiding and I felt like I could let go and take part in a conversation. I had a wonderful time chatting with Jane and Tanja, and I know both of these ladies and their families are praying for Mattie. In fact, Tanja told me that even her mom in Germany is following Mattie's blog and is praying for him!

While at Ann's, I had a wonderful lunch which she literally served me and put it on my lap to eat. She knows that food isn't top on my list, but if you put it in front of me, I will eat it. It was just a delightful afternoon, we sang happy birthday to Mary, watched the kids playing and performing science experiments. Ann's daughter, Katie and her friends were a pleasure to watch and to see

them interacting with each other, and really work as a team. I know I am probably not expressing this well, but it was a powerful experience to connect today with a special family, to be able to share a happy occasion, and to feel normal for a brief period of time. As I walked around Ann's house, all her family pictures on the walls, caught my attention. How a person decorates one's house I think speaks volumes, and clearly Ann's family means the world to her. Each picture in a way was telling a story, but more importantly captured a special point in time and development. It left a lasting impression on me, and Ann even has a sign in her house that says, "family is everything." I believe she lives and embodies that! I am not her biological family, but I sometimes think our connection transcends genetics. We are bonded through cancer. It was a pleasure to meet Ann's mom, dad (a real sweetheart), and aunt (Dottie and I were on the same wavelength about life and people) today and before I left, Ann made sure she gave me some birthday cake to bring Peter and Mattie. Ann also gave me a beautiful canvas basket for Christmas. The basket has "the Brown family" stitched into it on one side, and the other side, is stitched the word "hope." I am already putting the basket to good use. Thank you Ann for a special and memorable day. Celebrating your mom's life today was better than any therapy out there!

When I got home this evening I called Peter and told him I was headed to the hospital to play with Mattie for a little bit. Peter insisted I spend another night at home. Normally I would say no, but I really need this time away and even though Peter is exhausted himself, he still continues to always think about me and look out for my well being. Which I can assure you isn't easy these days. Cancer does a number on a couple. We are so wiped out most days, it is hard to connect and support each other like we used to. Cancer is not for the meek and fortunately Peter and I know each other for over 18 years, but I can see why families fall apart under such stress.

I arrived at the hospital around 6:30pm. Mattie was in good spirits and was creating! Peter and Liza (Mattie's favorite volunteer) were in the room with Mattie. I couldn't get over what Mattie was creating. If this isn't the true meaning of Christmas, I don't know what is! Mattie made his own nativity scene out of all the art supplies that Jenny and Jessie left him. Later in the night, I asked Peter if he coached Mattie to build this. Peter said it came from within Mattie! Somehow, call it crazy, but I feel as if God is telling me something here. Mattie's nativity scene was spectacular. Colorful, vibrant, and touching. What a special gift to see. I took a picture of it for you to appreciate. In the center of the scene is Jesus (with the plaid blanket), and Mary and Joseph are on the left. Behind the baby is the beautiful and bright star calling the wisemen and others to visit.

To the hospital tonight I brought several gifts that Mattie received today. Mattie loved the Christmas Popcorn ball decorating kit from Mema and Pipa (Ashley's in-laws/Bob #2's parents). What a great kit and we will have fun decorating and eating these creations. Mattie is into popcorn now. Thank you for such a fun holiday gift!

We want to thank Leslie Williams, Mattie's kindergarten teacher for the wonderful new Jan Brett book, Gingerbread Friends. I visited Leslie's class last December and read the classic Brett book, Gingerbread Baby. The kids loved the story and then decorated their own homemade gingerbread cookies with frosting and candies (thanks Margaret for coaching me on this idea!). I always had a great time going into Leslie's class, and as a fellow GW grad, we always had a lot to talk about. Thank you Leslie for continuing the Jan Brett Christmas tradition for us. Thanks for remembering.

Jane (an RCC mom and friend) gave me a gift bag today for Mattie. Inside the bag were wonderful handmade Christmas cards from the first graders at Blessed Sacrament School. What a special and meaningful gift. We will go through these cards tomorrow. Mattie actually enjoys seeing what other children create and send to him. Thank you also for the markers, stickers, santa pencil, and the Christmas stocking! Jane also gave me a very meaningful gift as well. It is a beautiful bracelet. This is what Jane wrote to me about the bracelet, " This bracelet was made in the holyland, in Bethlehem in Shepherds' field, apparently by descendents of the Shepherds who were present at Christ's birth. With the medalion of the Mother and her son, I thought of you." Thank you Jane for this incredibly meaningful gift, I will cherish it.

We want to thank the Bentsen family for bringing a wonderful lunch to Peter today in the hospital and for the wonderful gifts from SSSAS that you gave Mattie. The Saints scarf and water bottle are great. We also want to thank the Ferris family for a wonderful dinner and all the gifts. I can't wait to do the gingerbread house with Mattie, and he loved the Scooby Doo Christmas ornament. He did not have one! We look forward to doing a magical Christmas tree as well. The kettle corn was a major hit tonight. I took a picture of Mattie eating the popcorn right out of the bowl. It was too good, he couldn't wait to use his hands, that would take too long, so he went directly to the bowl. I just had to snap a picture (Liza in the background), because I haven't seen him attack food like this in a long time. Mattie also ate two chicken nuggets, drank some of his vanilla shake, had a full piece of Mary's birthday cake, and even flavored ices. It was a major eating evening!

I received some lovely e-mails today that I wanted to share with you. The first one is from Honey (one of my supervisors at GW). Honey wrote, "Each of you is beyond amazing! I am always thinking and praying for you, Peter, and Mattie. And with these prayers I now will be placing 18 cents into a jar as symbolism of my wishes on Mattie's behalf. The number 18 in Hebrew stands for "Chai" which means life."

The second e-mail is from my good friend, Jen, in Boston. Jen wrote, "I'm glad you have such generous people surrounding you and helping you to walk a very difficult road. I can't help but think everytime I see pictures of Mattie...This boy looks so healthy and vibrant; I can see how strong his spirit is just from a picture. My new prayer for the Brown family is for REST!" I end tonight's blog with a song Jen sent me. It is Martina McBride's "Anyway." I am a big new country music fan, so this meant a lot to me. What is interesting about the video is the written messages that pop up. I particularly like the one that says "I wish to be a cancer survivor."

Martina McBride's Anyway:

http://www.youtube.com/watch?v=1FdB5Adws78

Friday, December 12, 2008

Friday, December 12, 2008

Quote of the day (Thanks Charlie!): Charlie wrote, "When I think about what you, Pete, and Mattie have gone through I think it is impossible that so much has happened over so short a time. I hope the journey for recovery runs as swiftly."
Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible. ~ St. Francis of Assisi

This quote today describes our situation perfectly. We have done the necessary (diagnosis, treatment, surgery, etc...) in order to try to achieve what is possible (a cure), however, in the midst of achieving the possible we are definitely doing the impossible. I am not sure this quote would have meant as much to me before Mattie was diagnosed with cancer.

Thursday night was another winner. Mattie was basically up until around 5:30am. He complained of intense stomach pain all night long. He even threw up. So clearly the placebo treatment of saline solution wasn't cutting it. I do think a part of Mattie's stomach issue is related to anxiety, but now that the stomach issue is present, it does need to be treated. So he is now taking a medication for heartburn and acid reflux. If I listed all the medications Mattie is on or has taken, it would be quite a long list. I am grateful that the stomach meds are through his IV. As you have heard me say time and time again, Mattie is not compliant with taking oral medication especially when his stomach bothers him. It would be wonderful if I could sneak medication in his food, but that would mean that Mattie is eating. Mattie basically has no appetite what so ever. When he does eat, the only thing he will tolerate is sticks of cheese, occasionally yogurt, and flavored ices. Not the best diet, but forcing food on him and making him uncomfortable isn't an answer either.

I was e-mailing my friend Karen back and forth today. Karen wanted to know if Mattie was napping during the day, to compensate for not sleeping during the night. When I told her 'no' for the most part, she wanted to know how he functions with no sleep? An excellent question, because I am bearly functioning at all. I was watching a video with Mattie today and literally I was falling asleep sitting upright. Mattie kept kicking me awake, and wanted to know why I was so tired. Funny, isn't it?!

Mattie had a slow start to the day, but as the day unfolded, Mattie started to break through his shell, and he began to play with Linda, Jessie, Jenny, and Whitney. In fact, when Liza came over today to drop off lunch, Mattie even spoke with Liza. Of course Liza enticed him with her delicious pumpkin muffins and a great police hotwheels car. That immediately caught Mattie's attention. I was able to leave the room today and have lunch in the parent lounge with my parents. Mattie was able to separate from me, and he had a ball with all his ladies. They are designing a wonderful Christmas house together out of a cardboard box. But they also did a lot of other wonderful projects, and sticking with the cockroach theme, Mattie made a Christmas cockroach for me today. I am not sure what the deal is with cockroaches, but I have a feeling he loves to see my reaction to the whole idea. Thank you Liza for the special angel lotion and the wonderful homemade soup, salad, muffins, and fudge! Liza and I are on completely different campuses of SSSAS and if it weren't for Mattie's illness we may not of had the opportunity to connect like we do now. These are the gifts that pop up in between a whole lot of sadness.

It was wonderful for a brief period of time today to see the old Mattie resurface. In fact the joke the psychiatrist and I had today, was did we walk into the wrong room. Mattie did not throw anyone out and was smiling and talking. However, as the day wore on, by the late afternoon, the stomach pain arose again, and he retreated back into his protective shell (where no one was allowed in his room and no one could talk in his presence). It is very sad to see this transformation happen right before your eyes, a transformation that one doesn't expect to see in a six year old.

While Mattie was playing with his ladies, I met with Dr. Toretsky. We talked about Mattie's treatment plan for the next month. Mattie is scheduled to go back to the hospital on December 22. We thought Mattie was going to have an infusion of Methotrexate then, but it turns out Dr. Toretsky would like to give Mattie the more powerful chemo drugs first, Doxorubicin and Cisplatin. So on the 22nd, we will check back into the hospital for those drugs. I believe Christmas week will be hard, because these are powerful chemo drugs that most likely will leave Mattie neutropenic by the end of that week. Mattie will be given another CT scan the week of January 12 (to assess the lung lesions), and the current thinking is we will try to go to Sloan Kettering the week of January 5, to get the first administration of MTP-PE.

I asked Dr. Toretsky what the plan will be for Mattie's treatment based on what is found in the second scan. If the lung lesions remain the same or smaller during the second scan, then will we continue with his current treatment. If however, more lesions pop up and/or if the current lesions get larger, then we know that the current treatment is not working and all the chemo drugs he is on will be stopped. Then the next question from there is, then what? I think Dr. Toretsky is looking into the next steps if this is what happens, but today he seemed visibly upset by the fact that Mattie's cancer has spread to his lungs. I told him then he could only imagine how I felt. He also understood that waiting for the results of the first scan was absolute torture, especially in terms of how the results were delivered. So for the second scan he said that Mattie will get scanned at 10am and he will meet with us at 1pm, whether the results are positive or negative. Half my stress with the first scan arose because I knew Dr. Toretsky had called a last minute meeting in which he wanted Peter present for the results.

So needless to say, we have a lot riding on these new chemo drugs and the week of January 12 will not be an easy week. In fact, waiting until then is not easy either. I feel like Mattie's well being and safety is completely out of my hands, and really out of the control of the doctors as well. Only God can determine at this point whether Mattie will remain with us and for how long.

At around 6pm, Peter called me tonight and told me his company's holiday party was this evening. He hadn't told me before, probably because he did not want me to feel bad for not going, but all I could think about was last year's office party. Mattie was running around, happy, and it was really the age of innocence for us. Funny how things can change in a year. When Peter got back from the party though, I decided to pack up and head home for the evening. I need a night's separation from the hospital for my mental sanity and stability! We want to thank the Langford family for a wonderful dinner tonight. The California Pizza kitchen pizzas were delicious along with the chocolate treat!

When I arrived home tonight, I could see my two elves had been busy at work. Today my friends Ellen and Christine came over to my home and helped organize and pack up some of Mattie's toys and things that he has outgrown. That was going to be my project while Mattie was at school this year, but that never happened. In addition, since Mattie's illness he has accumulated some wonderful gifts and presents, but right now our home is brimming from wall to wall with things. Ellen and Christine could sense this was bothering me so they gave up their morning to come to see how they could help me. Believe me they had their work cut out for them. As they know I am very sentimental and I don't like throwing out anything, which of course leads to an accumulation of a lot of things. So they sorted for me today and put together five large boxes of things for us to donate. I need to sift through those boxes soon just to make sure there isn't anything of great sentimental value that I just can't depart with. With Mattie being so ill, I think I cling to certain things more than before. The ironic part, which many of you probably wouldn't guess, is I am a VERY private person. I imagine you most likely wouldn't guess this about me from reading this blog. But prior to Mattie's illness, I was much more reserved about issues, concerns, and feelings with others in my life. Which brings me to today. Under most circumstances I would never have asked anyone to go through my home and reorganize and purge things for me. That just doesn't fit my style. But there is a lot about experiencing cancer that helps to change your perspective. Ellen and Alison say this to me all the time, that people are looking for ways to help us. That helping me makes others feel good, and not to look upon my request as a burden. So I am trying to look at these requests now in this fashion. Any case, thank you Ellen and Christine for tackling a tough job, and hopefully you will continue to work with me on the stages of this clean out project.

I received this lovely e-mail today from Ashley. Many of you now know Ashley, since she led Mattie's prayer service recently. Ashley wrote, "Your blog describing yesterday leaves me without words. But I wanted you to know I read it, absorbed it, and the image of your day yesterday has remained with me today. I am thankful to have been able to step into Mattie's room for a few minutes. Thank you. I also have the image of Mattie's little hand waving to Sam. Oh, my. That brought some tears to my eyes. The wave was gentle and welcoming, such a contrast to the other experiences you have written about. Both experiences are true--the welcoming and the traumatic anxiety with others. It's incredible that both extremes can exist within any human body, especially the body of a little 6 year old."

As I sign off for the evening, I am happy to report that Mattie is fever free. All of his cultures appear negative, meaning he has no known infection that must be treated, and hopefully within the next few days his white blood cell count will rise and we can leave the hospital for a few days. All I know is Mattie's illness has taken a great toll out on Peter and myself. Like I told Dr. Toretsky, I could put up with six more months of this, if I knew that in the end Mattie would be okay. With cancer there are no guarentees and it is hard to plan for tomorrow. This level of uncertainty is hard to come to terms with and I am in no way there yet with accepting that reality.

Thursday, December 11, 2008

Thursday, December 11, 2008

Wednesday wasn't a good night to say the least. Mattie was up every hour on the hour. He was complaining of stomach pains, headaches, had a fever, and also spent a lot of time whimpering. It was a tiring night on top of hundreds of other tiring nights. How Peter and I function during the day is beyond my comprehension, because I think we are pushing our bodies beyond what is humanly possible to handle.

When I tell you today was a blur, I am not kidding. I have lost all concept of time. Why wouldn't I? Since every minute of my day is performing the exact same role. Mattie had a visit from Dr. Toretsky et al. (the et al. are the residents, and one of his students) this morning. For a child with anxiety seeing all of these people entering his room is hard to handle. Mattie started screaming when the doctor first came in, and so Dr. Toretsky left the room and tried again later. We spent the day battling 102 fevers, trying to push down tylenol every four hours (which takes an inordinate amount of energy and patience on my behalf, since Mattie is VERY non compliant with oral meds, and to top it off, all his sensory issues are heightened. So smells and tastes that wouldn't bother you or I, send Mattie right over the edge), and then we had to contend with a four hour long blood transfusion. Mattie needed the transfusion since he was anemic and his hemoglobin level was low. While this was happening, Mattie had to get his temperature and blood pressure checked every 15 minutes initially and then every 30 minutes to make sure he wasn't getting a bad reaction from the transfusion. For a child who doesn't like having people coming into his room and being touched, I bet you can figure out what kind of day this was! Thankfully we had Sarah Marshall today, who lived through Mattie's situation in full last week, and she is very calm and collected which helps a stressful situation.

This afternoon, Mattie did take a nap at around 12:30pm, which gave me the opportunity to meet with Mattie's psychiatrist. I told him what I have been observing and experiencing with Mattie, and he too believes Mattie is dealing with medical trauma. We talked about how to transition Mattie from anxiety meds to medications given for trauma, as well as a medication to help him sleep at night. Sleeping to me is key here. Mattie (and us) haven't had a decent night of sleep in a long time. I think Mattie needs to be reset so that he can have a peaceful night of sleep and right now his nervous system is in hyperalert mode at night. So I feel we have a plan, but it won't be easy to implement. The doctor could see I am wiped out, with not much else to give, and if Peter and I don't get a break, this won't do anyone any good. So he wants to work with me on helping Mattie eventually accept that I need time during the day to myself, time where he can be with someone else, and reengage with the outside world. Right now, Mattie is very closed, shut off, and avoids contact with others at all costs. It is very painful to see him refuse to talk with even people he knows and loves.

Mattie had a visit from Linda today who brought him all sorts of knex to build with. Below you will see some of the pictures I captured of Mattie's creations. The picture with Mattie in it, illustrates his knex fish and fishing pole he created with me!

Mattie also had a visit from Laura today. Laura is a flutist and she happens to be Dr. Toretsky's daughter's teacher. Dr. Torestsky asked Laura to stop by Mattie's room to play for him. During that time, I went to get something to eat while Linda was with Mattie and Laura. But Linda called me to let me know that Mattie was starting to get very anxious without me there, so I quickly headed back and got to meet Laura myself. Sometimes I wonder what is worse, never leaving the room, or leaving and then worrying when Mattie will meltdown and I will have to run back. The flutist's visit was a very nice gesture on Dr. Toretsky's part. I wish Mattie enjoyed this visit more, but I could tell when I got back in the room, Mattie was on hyperalert mood, and could have seriously melted down if I was gone one more minute.

In addition to dealing with the transfusion today, I also learned that Mattie's levels of calcium, phosphorus, sodium, and potassium were low. This was one of the potential side effects of Ifosamide, and therefore Mattie will need to go on supplements for quite some time to regulate out his levels. All fantastic news to a parent who has to do a song and dance for Mattie to take oral medications. There are times during the day when I say to myself, "you got to be kidding me!?" of as my in home nurse would say, "WTF?!" How much more can a person take?! Apparently a lot more, and as Peter reminds me, it most likely will get worse before better. Peter sums up our life now as "a miserable existence." That may sound depressing, but guess what? All of this is depressing, and if we weren't feeling any of this, I would say something was deeply and profoundly wrong with us.

At around 5pm, Mattie had a visit from Carrie and Emily. Carrie is my teaching assistant at GW, and she is also a professional counselor with years of experience working with children who have experienced trauma. Emily is a play therapist by training, and together they both came to try to engage and play with Mattie. Both Carrie and Emily were good sports. They really tried by bringing a vanilla shake and play doh, but Mattie couldn't tolerate them in his room at all. In fact, he worked himself up so, that they couldn't stay more than 10 minutes. After they left, he was screaming that he had a stomach pain and then threw up. He was demanding the antacid they have been giving him in his central line. But Dr. Toretsky did not want Mattie to have it today, since he is already on so much stuff. So Dr. Toretsky asked for my permission to give Mattie a placebo (just plain saline solution) instead of the medication. Because I felt that Mattie's stomach ache happened right after his anxiety of having visitors, I did see the need to try just regular saline solution, to see if the thought of receiving a drug calmed him down. It did indeed. He fell asleep, after his tirade.

There is something so desperate and sad about our situation. I think Mattie's doctors are trying their best to help us, and Dr. Toretsky could see I was simply worn out today, and so he gave me a hug. He said sometimes that is the best medicine. I can tell you the best medicine would be if you pinched me and told me this was a bad five month nightmare. The days are VERY long. Picture a day where you can't leave the room, where you are caring for someone morning to night, where there is so much uncertainty about the situation and what the future holds, where you see no one, talk to no one most of the day, never a minute to yourself, and bearly have time to eat. This is a brief synopsis of my day. But the day doesn't end early, it goes until 1am each day, and then even then, the night doesn't come without issues. At this point something has to give, I am open to working with Mattie's psychiatrist to figure out a plan.

I received two lovely e-mails today. The first one is from Grace, an RCC mom and friend. Grace wrote, "I'm always a few days behind in responding, but please know that I've been by your side experiencing each moment and praying for good news. In fact, at the recent prayer service for Mattie, I spoke with many people about their experience in following your blog. Some curse at the computer, some cry, some e-mail each other or pick up the phone to commiserate, and some further mobilize forces. We are all riding this roller coaster with you.We were all collectively devastated when we learned about the lung scan. But I have to say, my first reaction was "it's always darkest before dawn." My thoughts keep returning to the stories of hope that Emma's mom and the Canadian boy's mom provide. It very much seems like scans of the lungs are an imperfect science. I cling to the hope that the lung lesions will disappear as they did with the Canadian boy and that they can't be found again as happened with Emma.I also must add, that when I came to see you recently, I was so moved by how incredibly patient and loving you were with Mattie. You are truly a gift; I know of no other person who could be so calm and soothing as you were with Mattie while he continually pined for Peter. Even in your utter exhaustion, after months of dealing with difficult behavior, you somehow still manage to be incredibly fresh with your patience and care. Most parents exhaust this ability after a few, short minutes of dealing with a standard, run-of-the-mill temper tantrum. You are to be truly commended in your extrodinary ability to provide an unflappable calming, comforting presence for Mattie. Your presence rivals any benefit modern medicine could ever provide. When I met Whitney, she echoed these sentiments by saying that she had never seen such dedication from any parents she had ever dealt with. It was lovely to meet and talk with her. What a kind, caring soul she is. I was so heartened to see how truly dedicated she is to Mattie. Even her extended family is invested in Mattie and pulling for you. I'm so grateful to know that you are surrounded by such a caring, capable medical staff. There are so many people pulling and praying for Mattie. That has to make a difference. I know you have probably heard from a lot of the “team” that attended Monday’s Prayer Service – but I just wanted to re-iterate what a wonderful service it was – and WOW! I feel honored to be a part of such a wonderful team. One thing is for sure – this is a group of determined and committed folks – that are here with you for the long haul and will NEVER give up fighting for you, Peter and sweet Mattie."

The second e-mail is from Carolyn, an RCC mom and friend. Carolyn wrote, "As I read your blog daily, my constant thought is WTF!!! I also have continued to believe that God never gives us more than we can handle – in fact, it is that thought that has gotten me through several rough patches in my life – but I continue to wonder if God believes that you, Peter and Mattie have herculean strength (physically, emotionally and spiritually). Enough is enough! So I will continue to pray for some respite from your living hell and mercy for you all. Just remember – you are an AMAZING mother and woman! You have done everything right – and don’t let anyone tell you otherwise. A mother’s intuition is far more “knowing” than any doctor, nurse, therapist, technician could ever be."

I want to thank the Goff Glennon family tonight for a lovely dinner and for stopping by to visit. Typically I try to keep other children away from Mattie when he is severely neutropenic, but Mattie caught a glimpse of Sam through his door, and waved at him. So I did let Sam and Ashley (Sam's mom) into the room. Mattie spent a few minutes with Sam, but then Mattie shut down and Sam understood that he had to leave. There are times all of this is just too much for me. A six year old shouldn't have cancer, shouldn't be so weak, cut up and scarred, unable to play, go to school, have fun, and be innocent and carefree. Tonight I was talking to Tricia, one of Mattie's nurses, and she was telling me about her son's upcoming 16th birthday. For some reason this brought great sadness to me because I thought that this may not be an opportunity I have with Mattie. Certainly you can't think like this, but when you live with cancer and it affects your family, you can't help but think like this. It is a disease that affects the family system, and it is an equal opportunity killer. What I mean by that is it attacks the family's body, mind, and spirit.

Wednesday, December 10, 2008

Wednesday, December 10, 2008

Mattie developed a bad headache last night, he looked white as a ghost, and by midnight, as I was tranferring him into bed, I noticed he felt hot to my touch. By midnight, I was thoroughly wiped out from a long day (or maybe from a long five month ordeal), and there was a part of me that did not even want to take Mattie's temperature. But I knew that would not be a good or safe idea. So out came the thermometers. Mattie had about a 99 degree fever, and I alerted Peter. Peter was sleeping in the living room with Mattie last night, and set his alarm clock periodically throughout the night so that he could wake up and take Mattie's temperature. Under normal circumstances, none of us caring for a child would even think twice about a 99 degree fever. In fact, if you called your pediatrician, he/she would probably laugh at you for calling (been there, and experienced that!). However, with a child who has cancer, a fever can be deadly, and can lead to sepsis, because one's immunity is completely compromised. Which is why we fanatically take temperatures when we suspect a fever. A fever of 100 degrees or more is of concern, and this is what we were monitoring for. I have also been told that as soon as such a fever is identified and the quicker Mattie can get on antibiotics, the better. So I went to bed last night, but certainly did not sleep peacefully in fear we would have to rush off to the hospital.

This morning, Peter let me know that Mattie ran a 99 degree fever all night long. At 8:30am, I took his temperature and it was over 100 degrees. By 11am, it was over 101 degrees. I called Dr. Toretsky at 8:30am and alerted him and he told me to call him back at 11am. At 11 am, we both agreed that Mattie had to come in. When we got to the hospital, we headed up to the PICU. But they couldn't admit us here since Mattie's room wasn't cleaned and there was no hem/onc nurse to care for Mattie. So I had to wheel Mattie to the Lombardi Clinic to start the process of blood cultures, and to get him hydrated and on antibiotics. Mattie refused to get out of his wheelchair and sit in a bed for treatment. I don't even argue over this anymore, if he is more comfortable in the chair then so be it. While I was waiting with Mattie, Ellen came to visit. She brought me a wonderful lunch from the Carlye Grand (a mango chicken salad) which is one of my favorites. Ellen also brought Mattie a vanilla shake, a happy meal, and some wonderful Scooby Doo books and a cute snowman flashlight. Unfortunately Mattie did not give Ellen a warm reception, but he did not throw her out of the room, so that was a step forward in terms of how he reacts to visitors. While I was with Ellen, Dr. Synder came in to observe Mattie and to examine him. Somehow he puts up with Dr. Synder. She tells me she has a strong willed personality, so maybe it is the meeting of the minds here, I don't know. As Dr. Synder was leaving the room, I joked with her and I told her we have to stop meeting like this. Her response was very cute, she said that she is willing to start drinking tea now so that we could meet up together.

Mattie was very tired and wiped out. He spent a good chunk of his time in clinic today nodding off, but not soundly, because he also had one eye out for me. Linda came by and asked Mattie if he wanted to meet Santa. If you recall, today was a Santa party and I was debating yesterday whether I was going to take Mattie to it. The fever made that decision for me today. In any case, Linda, Jenny, and Jessie, escorted Santa and Mrs. Claus to Mattie's clinic room. When Santa first entered the room Mattie could bearly open his eyes and lift his head. You will see that picture below. Then as Santa delivered a large bag full of presents to Mattie, he became more animated and was even willing to take a picture. I love this before and after shot of Mattie. Despite how tired and wiped out Mattie was, I found it fascinating to see the magical power and draw of Santa Claus. For just a quick and fleeting moment, Mattie was energized and happy.

After Mattie received his antibiotics, we were able to take Mattie up to the PICU. Ellen helped me transport Mattie along with a nurse from the clinic. There were just too many Santa packages to take up and I couldn't manage everthing.

When I got to the PICU, I quickly realized I wasn't assigned a HEM/ONC nurse. Though the nurse who worked with us was nice, she did not know us, Mattie, or our situation. A big problem when you work with a child who has anxiety! Mattie was hysterical. The nurse then handed me a bunch of admission forms to fill out. Needless to say I was insensed, since how long have I been coming to this hospital? Please don't tell me you are going to ask me to repeat information that has been WELL documented countless times before. To add insult to injury I had a resident come in and start asking me history information on Mattie. Information that again, the hospital has in triplicate. Now mind you I was absolutely punchy today, and when the resident asked me my age, I basically said I did not see how my age was relevant to Mattie's condition or admission. I eventually gave it to her but not without a lecture.

Thank God Tricia came in. Tricia is one of our favorite HEM/ONC nurses. She was the charge nurse today, and when she saw what I was being put through with forms and questions, she corrected that right away. She took the forms from me, and she lectured people outside our room. She said that they could easily get this information from the clinic and not bother me with this. This is not the first time Tricia has helped me, which is why she has a special place in my heart. She has advocated for us and Mattie numerous times, and also did so last week at a meeting we were having with the doctors and residents.

It is 9pm, and Mattie is still running an 101 fever. He has a headache, and the chills. Fortunately he is being hydrated, given tylenol (his absolute favorite thing to take.... NOT!), and antibiotics. We did learn today that Mattie reached his nadir, or his low point in terms of his white blood cell count. The concern during the nadir is that the body's first line of defense against infection (white blood cells and the platelets, which help to clot the blood) are low leaving a person more susceptible to infection and bleeding. Mattie's Absolute Neutrophil Count is 0, so he is severely neutropenic (which means a low number of neutrophils in the blood, and neutrophils are the primary line of defense against infection) but has 10 white blood cells in his urine. These cells in the urine indicate a possible infection. So we shall see what if anything the cultures reveal tomorrow.

We want to thank the Katcher family for a lovely dinner. We all enjoyed your gingerbread cookies too, and the nurses appreciated you bringing them some too. But the hit for the evening was the noise putty that Eva Katcher brought Mattie. That putty makes all sort of sounds, mainly all the gross sounds that a six year old boy would find hysterical. He had me making these sounds for all the nurses who came in the room, as well as for my parents. As I sign off for the evening, Mattie is in bed and watching the movie, Cars, with Peter. I am not sure what our night holds for us, but one thing I have learned is always expect the unexpected, and you won't be disappointed.

Tuesday, December 9, 2008

Tuesday, December 9, 2008



Quote of the day (thanks Susan S.!): I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~ Mother Teresa

When Susan sent me this quote today, it really hit home for me. I do think that sometimes people are given much more than they can handle. Today was one of those days that made me reflect upon this. Being home as I said before is a mixed blessing. Today Mattie was in a funk. He did not want to do much, did not want to interact with my parents, and needed constant one on one attention. There are times that I do see that Mattie is indeed depressed. Lord knows he has every right to be, but it just makes the days much more painful, much longer, and makes you feel helpless without an end in sight.

This morning I received a lovely e-mail from Ashley. Ashley is a pastor, RCC mom, and friend. Ashley led the prayer service for Mattie last night. She shared with me her impressions of the evening and she even shared her talking points which I will share with all of you later in the blog. I feel she put so much thought and effort into this, that all of you should have access to this meaningful script. In any case, as I was reading Ashley's talking points, the seriousness of Mattie's situation hit me. Not that I don't know this is a life threatening situation, but I guess in order to survive day to day, you deny the inevitable. It is a great coping mechanism, I guarentee you. But today, I couldn't help but reflect on the possibility of Mattie's death. This notion is hard to deal with, it was hard to shake once I got it in my head, and I wonder really how parents can imagine their world without their child in it?! I don't know, I did not come to any conclusions.

Today Mattie and I played trains together on the floor, we did lots of computer time together, read books, played a Scooby Doo game, and even took a short nap together. But the days are long, and when Mattie doesn't sleep until 1am or so, there is simply no down time. On wednesday Mattie has been invited to meet Santa at Georgetown's hospital, but he goes back and forth about whether he wants to do this. So at the moment, I still don't know if we are going, but I do know that Mattie starts physical therapy again tomorrow and friday, and he will have occupational therapy on thursday.

Mattie had two lovely visitors today, Maria and Luz. Both ladies help manage the complex we live at in Washington, DC. They came over today to deliver a life sized teddy bear (which is now on Mattie's bed), a huge get well card signed by many of the complex's staff, and the staff at the complex also pooled money together to make a generous donation to Mattie's fund. What a lovely and meaningful gesture. We have lived in this complex for 14 years, and it is nice to know that we are indeed a part of a caring and compassionate community. Thank you for brightening up our day!

I also received an e-mail today from my colleague and friend, Camille. Camille let me know that the three local counseling associations I have been involved in, are hosting a social and fundraiser on Mattie's behalf on December 21. Thank you DCMHCA, DCCA, and DCSCA for your support during this difficult time!

Mattie did receive several nice gifts in the mail that I also want to mention. Thank you Grandma and Granddad for the remote control car. It is zippy and we had remote control car races today! Also we look forward to using the wire puzzles. Never did that before. We want to thank Grammie's friends from the stroke support group for making a generous donation to the Mattie fund. That was so thoughtful of all of you. Lastly, Mattie received some lovely books from Janet W. We do not know Janet, but she read an article about Mattie in the in Velador, a newsletter for the Caribbean Conservation Corporation (of which Roxana, Mattie's sea turtle is a part of). Thank you Janet for thinking of Mattie!

Lastly, I want to thank Sylvia for a wonderful dinner tonight. Sylvia was a professor and mentor of mine at GW. She has been very helpful to me in tracking down trauma resources for Mattie and in the midst of our dialogue about this she also wanted to get me food of my choice tonight. Thank you for the great food from the Cheesecake Factory! Mattie appreciated the pizza.

I end tonight's blog with the script that Ashley developed for Mattie's prayer service. I am hoping you enjoy reading it as much as I did!

Prayer Service for Mattie Brown - lead by Ashley Goff Glennon

Ring Bell
Light the 3 candles
Welcome:
Church of the Resurrection, Resurrection Preschool
Ashley Goff, parent at RCC. Sam was here at RCC with Mattie. Associate Pastor at Presbyterian church in Dupont Circle.
Idea for Prayer Service came up a few weeks ago from Kathy Brown, another parent from RCC who had kids here when Mattie was here at RCC. Kathy is a nurse at GW and as she put it, “believes in the power of prayer.” Asked me if I wanted to be involved and here we are.
This prayer service was created just for those on Team Mattie and Ann Henshaw’s email list. That was intentional b/c we thought Mattie’s situation isn’t getting better or easier and we wanted to build-up this community. Connect with each other, put faces to names, and strengthen this “body” of people to continue on with love and care for the Brown Family. They have a long road ahead and we need to shore ourselves up to be part of that long, painful road. This is our purpose for being here.
This is more than just community building and get to know you. This is about prayer. It’s about connecting with each other for the sake of the Brown family through this ancient, spiritual practice that can tie and bind us together.
Each one of us probably has a different definition of prayer, different experiences, different needs for prayer. We are here because prayer calls us to remember that there is a presence in the universe, in each of us, beyond our understanding yet still empowers us to work through and connect deeply with struggles, heartaches, and life threatening situations such as Mattie’s.
Here because prayer can make a difference. Lots of research being done these days that shows prayer and alternative modalities are helpful, and a creative resource in times of illness. Duke University has an entire center on Spirituality and Health and NIH has done a lot of work on alternative medicines along with GW. Prayer is an essential component to the picture of healing and well-being.
Know prayer is a powerful tool in healing b/c it connects with our core—the energy, the Spirit, the emotions, the illness…prayer gets to the root of who we are and when you are sick or care giving, the root of who you are is very much exposed. Vicki’s blog.

Tonight take advantage of this context of RCC which thrives on interactive and sensory experiences as a way of learning. This prayer service will be interactive and sensory. This won’t be me praying, and you all listening. You will be reflecting and doing tonight, getting at the heart of what Mattie’s illness and his grim prognosis mean to us.

Ground Rules…….
1) Confidentiality: what is shared in the room, stays in the room.
2) Safe space: share, write, reflect what you want and capable of doing.
3) What comes up, comes up. If all of a sudden you find yourself thinking about your Aunt Betty who died of breast cancer two years ago….feel guilty for not focusing on Mattie. Ok. Your story that comes up is an extension of Mattie’s story.
4) Non-judgment: what we hear and witness in this room is not only kept in confidence but not judged. It’s about acceptance. Accepting people’s understanding of prayer, what comes up, how people express themselves, etc.
5) Sharing in groups….don’t have to share. You can just listen. Your choice.

Anything else?

Begin tonight with a guided meditation, meditation on Mattie’s diagnosis and where we are right now. This is to get us centered and focused.

Focus on the lights around the room, close your eyes. Find yourself getting distracted, come back to your breath, your core.

After meditation, time for deep silence. Time to be quiet, still, to go deep, listen to what’s going on with you around Mattie’s illness and caring for Peter and Vicki.

Be in deep silence for 5 minutes or so. Want you to breathe. You are invited to be still, quiet, aware of community, aware of what comes up for you in the silence. In our church we have a song with the words, “be still and know that I am God.”

We aren’t still very often. Don’t get stiff, be relaxed.

Ring the Bell
Guided Meditation

Take yourself….back to the summer….it’s a DC summer. Hot. Humid. Remember what was on your mind….kids….camps….friends….vacations…..your own family going-ons…your own highs and lows….take yourself back to the summer…..when you received the news….that a 6 year old…Mattie Brown…has bone cancer. Did you hear it…from Vicki….from Peter….from email….a phone call….a friend…..how did you hear the news. Take yourself to that moment of receiving. You heard Mattie has bone cancer and you felt…..what. a pit in your stomach…numbness….tears on your face….deep fear….anger….confusion….what was moving inside of you when you heard the news that Mattie has bone cancer…..

The days moved on and the blog reported the news. Two parents….an emotional train wreck, fearing for their child’s future and well being. Mattie still being Mattie.

The testing begins…the waiting begins…..we wait, we read, we feel….we look at the world around us in a new way, with a new field of vision.

Bad news comes again…Mattie’s cancer is found in other bones. This tiny, 6 year olds body is being ravaged by cancer……those dam cancer cells don’t stop. They have a life and power of their own. The cells create pain enough for morphine. The cells create tears, fears.

The days continue….chemo begins….along with the side effects. We read the blog. We talk. We email. We visit. Community is building.

Mattie’s journey continues…..the journey gets hard, painful, emotional. The news never gets better. Now lesions of the lungs. Mattie is taken to the threshold of pain and emotional well being. Vicki and Peter are taken to the same place. We read. We hear. Side by side, we walk with Mattie, Peter, and Vicki as the trauma and nightmare of the journey unfolds, we are taken to a place within ourselves we don’t want to go. We witness friends endure the greatest challenge of their lives.

But here we are. Together.

Holy One, the one of many names and faces, we cross the threshold of life with you by our side, witnessing your Spirit in the hands, the hearts, the lives of those around us. You hold us together as Mattie finds the strength within to live, as Peter and Vicki fight like hell for their only child. You guard each throbbing wound, reminding us it’s not the wounds that give us life, but the tending of them; it’s not the hurt and pain that makes us whole but the mending of the brokenness that brings us life anew.

In the stillness, with music as our comforter, let us hold Mattie and Vicki and Peter in the light, in the darkness. In the stillness and silence around us, let us be with ourselves. Visit us in the stillness, Holy One. Call us into a deeper dimension of the self, into the sacred wells that exist within us where we can find nourishment for ourselves, Mattie, Peter, and Vicki.

Let us be still and silent.

Gently return yourself to the space and pull yourself out of the silence.

Mandala: Sanskirt words meaning of essence, having, or containing. It’s a spiritual tool to help with focus and concentration. Used in meditation practices, especially in Buddhism.

Mandala is a safe space.

This is your safe space. You’re invited to draw a circle. Mandala is always a circle. color, draw, express yourself in your Mandala. Draw in the circle. This is your safe space to express what came up for you in the stillness.

Somewhere in your mandala, write a word or phrase that came up over and over again. Maybe it was Mattie, maybe someone else’s name, maybe an image, symbol, picture of a safe place, dangerous place. Write that word or phrase in your Mandala and then draw, color around it.

Share in groups. You can share about what came up, what your picture means. Or you can share about the experience of being in silence and reflecting---may give you a little more privacy if not ready to share specifics about what your mandala represents.

Share in groups of 4-5.

What came up…….

Now I want you to write a letter to Vicki and Peter about your word or phrase. Not going to send it. But pretend. Tell them about your word or phrase. Give you a few minutes to write.

Your word/phrase going to shape this next prayer. I will offer some words of prayer, time for you to share out loud or in silence your word or phrase. Don’t worry if you think people won’t get it or it will sound weird or something. When we share these words, connects us because we know what’s behind the word/phrase—came out of our core, deep place within us. Share the word/phrase, get a glimpse of what we are carrying with us as we care for Vicki and Peter and Mattie. Also space in the prayer to name those we know, family, friends, ourselves, who are living with cancer, have died from cancer.

Prayer:

Ancient, Holy One, who tends to all things that are hurting and broken and makes all things new, may we receive with gentleness the task to care for and love Mattie, Vicki and Peter. We gather in this community, surrounded by Light, to face the truth and ugliness of Mattie’s cancer; to name what it means to us, so we can be a stronger force of light and love for the Brown family.

Remind us, Holy One, of the acts of love and kindness that can make a difference: openness of a hand, tenderness of an embrace, spaciousness of a heart, graciousness of a meal served and the offering of a vessel of tea or soup, the sharing of prayers for healing.

You are there, Gracious One, in every act of care—acts of kindness and friendship. You are there in the times of pain, suffering, vomiting, outbursts, the deliverance of chemo.

We pray for Mattie’s team of specialists: Dr. Henshaw, Dr. Snyder, Dr. Gonzalez, Dr. Myers, Dr. Toretsky, Dr. Shad. For the child life specialists like Linda and Whitney. For Mattie’s nurses who handle the chemo with love, the medical techs who administer tests with patience, for Mattie’s psychiatrist who is tending to Mattie’s extreme anxiety, for the facility folks who clean Mattie’s room and make it a home. Bless their hands, their hearts, fill their work with compassionate presence.

We know that Mattie isn’t the only one among us praying and living through cancer. Cancer has touched our lives in ways beyond measure, ravaging the bodies, leaving internal scars, of those we love, quieting the heartbeats of those we’ve known and embraced. Tonight we remember the names, the faces, the lives, the stories of those impacted by this disease. Hear our names, Holy One, of those who have lived and died with cancer:

[names]

The journey can leave us speechless, searching for words to express our thoughts and feelings. Tonight, Ancient One, we found some within the deep well within us. We found words that might just express a glimmer of what we are experiencing as we walk this road of cancer with the Browns.

Hear our words, Holy One. Receive our words. Welcome our words. Connect with our words. Let our words build up our community of care. Hear our words offered out loud or silently within.

[words]

With names, with words, with silence—let us hold on to these things with persistence, moving us forward, not knowing what life holds next, but being prepared for how life unfolds for Mattie, Vicki and Peter.

May it be so.

Transition a bit. Finish the sentences. More clarification exercises. Remind us that in the midst of this nightmare, we still have power. We don’t have the power to save Mattie from the cancer growing, returning, or at some point, to save his life. But even in the midst of this nightmare, we can still find something to be grateful for.

Helps balance out the ugliness we read and witness from this journey.

Also…finish the sentence about commitment. You may finish the sentence with what you are already doing. That’s ok. Re-commitment.

Finish the sentence….get in same group of four.

Because of my realizations….share out loud.

If time……mandala……..

Closing:

Stand.

Hand thing. As feeling the pulse…..

Close eyes. Feel our power and energy pulse.

Take a final moment of stillness. Take a breath. Take in what you’ve realized tonight. Take in what you’ve heard from others.

We stand, surrounded by a presence in the universe, in each of us, beyond our understanding, a presence that empowers us to face life and death for the sake of community and friendship. May we show Mattie that we have been taken hold of by this gentle, powerful, life-giving presence.

May it be so.

Monday, December 8, 2008

Monday, December 8, 2008



Quote of the day (Thanks Charlie!): Patience and perseverance have a magical effect before which difficulties disappear and obstacles vanish. ~ John Quincy Adams



Sunday night, Mattie had a good night of sleep, and so did we. Melba, was Mattie's nurse on sunday night. Melba also took care of Mattie's four nights last week. Melba lived through the horrible night where Mattie was up for 2am until 5:30am screaming hysterically. Last night, Melba came over to me to let me know that she has since been praying for Mattie. She was very concerned by his behavior this week. Melba is another example of the incredible nurses that supported us this week. I even had a nurse, Erin, give me a neck massage. What can you say about these fine women, other than thank you for all you do for us!


This morning, I knew we were going to get discharged from the hospital, and I started mobilizing forces. I asked Peter to leave his car at the hospital because with Mattie's wheelchair, I can't fit all the things we have at the hospital in my car. Peter took a taxi to work, and thank goodness he did. Fortunately, my parents drove my car to the hospital and helped me pack up the room. Which for me is a two hour ordeal. Linda also helped us and worked with Mattie on designing his Christmas house that he is building out of a cardboard box. This box is slowly getting transformed into something wonderful. Just an aside, but don't you find it funny how a child loves a cardboard box? To a child a box appears to be the world's best form of entertainment. Mainly because it can be used in any way that the imagination sees fit.


My parents and I did several runs to the cars with stuff from Mattie's hospital room, and then I went up to retrieve Mattie. In the midst of this, my car's battery died, and my mom came running up to the fifth floor to find me. Thankfully Linda called security and my dad found a helpful bystander who was willing to jump start our car. Thank you Linda for helping these folks find the battery in my car. Apparently it is concealed and all the people standing around my car couldn't find it. Linda put them to shame.


When we got home, it was another ordeal of unpacking things and trying to reorganize our lives. Not an easy task. Each time I have to do this, it becomes a little more stressful, and my patience level is slowly disappearing. When I enter our home now, it seems so cluttered. There is no organization and the lack of organization makes me very uneasy. So much so that I landed up screaming all over the house today, and my parents and Mattie just were looking at me. Of course Mattie landed up crying because he doesn't like to hear screaming. Naturally Mattie's crying reset me, and I just said internally to myself, "what ever, so our home is cluttered, there is nothing I can do about it now." That is not the priority.


As I was packing up Mattie's room today, trying to listen to discharge instructions for Mattie's care, and feeling the stress of taking Mattie home, I started to build up a certain amount of anger inside. If one more person told me how wonderful it was that I was going home, I thought I would seriously hit them. Going home is no blessing. It has its complications. First of which is Peter and I are completely on and responsible. Not that I take many breaks in the hospital, but I have a huge support system there. In addition, this week, not only do I have to heparinize Mattie's central lines (which I am used to), but I have to administer GCSF (a white blood cell growth factor) each day through Mattie's central line. I haven't done this in ages. Fortunately I kept the instructions from when the nurse trained me months ago. Then of course I have all of Mattie's medications to manage. No problem! Piece of cake. Sometimes I wonder whether the medical community is! Are they out to lunch?! I do think they are probably well intentioned, but I think many of them haven't walked in my shoes and simply don't have a clue. Because if they had, they wouldn't be wishing me a good time at home. My recommendation is they be forced to spend a week in a PICU under the conditions we live and either have to go through the treatments themselves or observe a loved one receiving them. I think that would be a humbling experience. If they think they were tired from med school and rotations, forget about it. That was nothing compared to the level of fatigue, stress, helplessness, and so forth that we live each and every day. I could go on, but I don't think this ranting and raving is accomplishing much, other than being cathartic. The insensitivity around me sometimes makes me want to scream. Most of the time, I can rationalize what is going on around me, but I can tell you today was the day I thought I was going to snap at someone. When the car's battery died, that almost sent me over the edge, and when the hospital security person came up to me and told me I couldn't park the car by the ER, I literally almost took his head off. What does he think I am doing by the ER? Just hanging out?! Like I have nothing better to do.

Mattie came home and was happy to be here. I got creative today and brought his chairs and table from his bedroom downstairs to our livingroom. He literally got himself up from his wheelchair and spent time today sitting in a chair and doing puzzles with my mom. He watched the movie Cars with my parents and I as well. So his spirits were good, and his mood was SO much better than I have seen in weeks. The power of medication. As I sit and type the blog tonight, Mattie literally got off of his chair and is now sitting on the floor. I am not sure how he managed to bend down to the floor, but there he is playing with his trains. He is using both hands now, and is slowly working on his flexibility. I am encouraging him to walk and take some steps. I think he is feeling more confident in his abilities, and it is my hope we can work on movement this week before he turns neutropenic and we have to head back to the hospital.

We want to thank Kathie for a lovely dinner tonight. We loved the spinach pizza! We also want to thank who ever delivered us dinner last night from the Cheesecake Factory. We weren't expecting that, and I am not sure who ordered it for us, but the pizza was a big hit with Mattie. We want to thank Bob Weiman (SSSAS head of the lower school) for the wonderful magic trick he sent in the mail to Mattie. Bob, you will have to teach this one to us, because I have no idea what to do with it. I am magically challenged. Also a special thank you to Debbie Pollak. Debbie is Mattie's art teacher at SSSAS. Debbie created an amazing book with lovely letters and art work from the first graders to Mattie. The cover of the book is stunning. It has Mr. Sun on the front with all the childrens' names written on the rays of the sun. The first graders wrote such beautiful things to Mattie, such as they wish they could paint like Mattie, or they want to be his friend and play with him, or they want him back to school as soon as possible. It is amazing to see how in just a few short months, these kindergartens have now become first graders and are writing in full sentences. Amazing.

This evening, Ann called me and let me know how lovely the prayer service was for Mattie. I was so touched to hear how many people attended the event, and the spirit and energy that was generated. We thank SSSAS and RCC for their support and attendance. We have only been a SSSAS family for one year, and yet it is very reassuring that SSSAS leadership is so supportive of us. Thank you Joan Holden, Bob Weiman, Susan DeLaurentis, and Leslie Williams! Peter and I especially thank Ashley Goff-Glennon and Kathy Brown from RCC for organizing and creating this empowering evening for all of Team Mattie. For all those who attended the service, a big heartfelt thanks!

Mattie ended his evening with a visit from JJ (our resident Jack Russell Terrier). JJ's owner, JP brought Mattie a gift back from his trip to Spain. Mattie loves his Matador piggy bank and it was funny to watch JJ chase around after Mattie's remote control car. As I sign off for the evening, I am hoping that we all get some rest, that Mattie continues to grow stronger and happier at home, and that for a moment in time we can forget about hospital sounds, scans, and we can leave our fishbowl existence behind for just a few days.

Sunday, December 7, 2008

Sunday, December 7, 2008

Message of the day (Thanks Charlie!): A couple of short quotes, the first confirms what many of us said regarding your mothering abilities--and you do have all the right instincts! "Follow your instincts. That's where true wisdom manifests itself." ~ Oprah Winfrey

And while the medical personnel want to help Mattie the following remains true so you and Pete need to follow your hearts! "There is no friendship, no love, like that of the parent for the child." ~ Henry Ward Beecher

I want to thank the Bentsen family for bringing us some holiday treats on saturday at the hospital. Mattie loves all the winter scene sparkle cups and I love the teas inside of them. In fact, I am drinking one as I type today's blog. The brownies and meringues were tasty and very festive. Thank you for bringing holiday cheer into our room yesterday. Also the ornaments for Mattie's tree are very special. We placed them on the Christmas tree in the hospital room. Thank you so much for thinking of us!

We also had a visit from Julia Lee (an RCC mom and friend) on saturday evening. She delivered us a delicious dinner (I loved the Korean beef, it was wonderful!) and her family also designed something very creative for Mattie. Julia is a social worker by training, and she has been giving Mattie's situation some serious thought. Julia and her children designed bone bugs out of playdoh. These bugs even had antennae and legs (made out of uncooked spaghetti). Julia brought Mattie this playdoh stamp, so he could grab the stamp and squash the bugs. Mattie was very intrigued by the bugs, and actually they were so adorable, we hated to squash them! But we did! Julia brought extra playdoh and Mattie went to town with the bug theme last night. He even designed two cockroaches (I have no idea why he is SO into cockroaches, because I can assure you his mother isn't!) to drive his lego car that he built with Peter and Liza (one of our favorite hospital volunteers). You can see a picture of Mattie's lego car with the cockroach drivers (got to love the red buggy eyes!) as well as a picture of Mattie in bed enjoying the Christmas lights Linda gave him. Thank you Julia for this creative and effective idea, I agree, I think it is important for Mattie to be reminded about what he accomplished and his role in the recovery process!

On Saturday evening, we had the delightful company of Liza. Some of you may recall my description of Liza from previous blog postings. Liza is a former professional ballet dancer. You can instantly tell she was a dancer by looking at her, but in addition to this, Liza has a beautiful voice. It is so sweet, and it reminds me of Billie Burke's voice in the Wizard of Oz (Glinda, the good witch). There is a lot of substance to Liza, she is warm, sensitive, caring, and bright. We were happy to hear that she just transferred from her graduate program at Columbia University to a program here at Georgetown. Mattie is very fond of her, and I can see the feelings are mutual. Liza spent several hours with us last night, building legos, chatting, having dinner with us, and helping to brighten Mattie's mood. Liza brought Mattie several gifts such as a wonderful planetarium (which we put batteries into and observed how it lit up the room with star formations), Lightning McQueen sox and tatoos. Our whole family is fond of Liza, after all, how can you not love a person who is so generous with her time and who loves playing with your son and seeing him smile? Below you will see a picture of Mattie and Liza together.

On saturday afternoon, I went home for about 6 hours. It was delightful to get away from the hospital. To be home and hear absolutely nothing. No beeping machines, no talking, no crying, NOTHING. While I was home, Peter was playing and entertaining Mattie. By the time I arrived back at the hospital, I could see Mattie was in a great and happy mood. He thoroughly enjoyed his "daddy time" and had a fun time building legos. Mattie only had one dosage of Ativan yesterday (which is the anti-anxiety medication Mattie has needed through his central line). Mattie is slowly getting used to taking the oral anti-anxiety medication in lieu of the ones through is central line, and Peter and I can clearly see it is making a huge difference. Mattie is now able to engage in talking and playing, he isn't so scared when others enter his room, and he doesn't appear as agitated and jumpy. So this is excellent news.

The real test to me though was how Mattie was going to do sleeping wise saturday night. Mattie, as usual went to bed late on saturday, around 1:30am. He fell asleep watching Scooby Doo. Many of the nurses tell me this sleep/wake cycle is not unusual for someone who spends a lot of time in a PICU. The PICU is fully on 24/7, and I think this definitely plays a role in confusing our brains and bodies when it comes to sleeping. Any case, Mattie was up a couple of times during the night, but was easily comforted and went back to sleep. A major difference from what we had been dealing with all week in the hospital. Peter was going to go home last night, but the mood in the room was so cheerful and happy, and Peter and Mattie really had a wonderful time bonding, so needless to say, Peter never left.

Mattie did an excellent job holding his own through this new chemo. The chemo ended on friday night and he is being hydrated this weekend to help flush things from his system. Technically I guess we could go home as soon as possible, but the doctors are aware of my hesitation. I want to make sure we have achieved the right balance of anxiety medication before we head home. In addition, I want the opportunity to chat with Mattie's psychiatrist on monday. So I am in no rush to run home, because in all reality the situation stinks whether we are home or in the hospital.

As I write this, I am home sitting in bed. I wanted the opportunity to come home again today, and Peter helped to make this happen. Peter ran out this morning from the hospital to buy more lego sets for Mattie. Mattie is just tearing into them and loves working on them. I actually consider them therapeutic, because he has to move his arms, hands, and fingers. In fact, Mattie has been holding out on us. He can easily use both hands and he can lift his arms and bend them at the elbow to touch his mouth. Lord knows when he learned to do this. But now I see I need to encourage him to do more things for himself. We are starting with feeding himself!

When I left the hospital today, Mattie and Peter were building and eating pasta. Mattie had a spaghetti request at 9pm on saturday. So we ordered from a nearby restaurant, and Mattie literally ate two plates full of pasta. The pasta frenzy continues today. Before I left though, Mattie and I took a stroll to the parent lounge and fed the fish in the tank. Mattie promised Linda he would do that this weekend, and he reminded me of his responsibility this morning!

We want to thank the Bower family for a wonderful chinese dinner and all the gifts you gave to Mattie. We look forward to watching the Bee Movie tonight and designing some knights in the book you gave us. As I sign off for the day, I want to thank all of you for your continued support, for reading the blog, for sending e-mails, mail, and gifts. All of your thoughts and prayers make a big difference. When I was chatting with Michelle Bower today, she said to me that she and others just don't know what to say to make this situation better. She is absolutely right, there is nothing that can be said. But the actions and commitment that all of you make to us each day is far better than any words you could say to us. Thank you! I end today's blog posting with a quote my friend and colleague, Camille, sent me.

"Courage comes and goes. Hold on for the next supply." ~ Vicki Baum