Saturday, February 21, 2009

Saturday, February 21, 2009


Quote of the day:

"No act of kindness, no matter how small, is ever wasted." ~ Aesop

Mattie's Absolute Neutrophil Count (ANC) dropped today down to 16. It was 36 yesterday, and we had hoped it would continue rising today. In addition, Mattie's platelet level dropped and therefore he had to receive his third platelet transfusion since last week's admission. As of today we are at day 10 in the hospital recovering from neutropenia. Peter and I decided to ask Dr. Abu-Ghosh yesterday whether Mattie's reaction to ifosfamide and etoposide was unusual (since this wasn't our experience with these drugs back in December). She told me that she has known some patients who took over 26 days for their counts to rise so that they no longer had neutropenia. Most likely Mattie's counts will not come back until sometime next week, therefore, Mattie's chemo schedule will be altered, since he won't qualify for methotrexate on monday. He will continue to receive MTP-PE next week though.

While I was home this morning, I had the opportunity to read through some other caring bridge webpages of other children around the country who have osteosarcoma. I have become connected with a lovely mom in Nevada and she maintains her son's webpage. This morning she alerted her readers to a teen who is losing the osteosarcoma battle in Texas. I was saddened to read this, but then I clicked on the link to read this young man's webpage for myself. Certainly I am dealing with an inordinate amount of sadness in my own life, but a part of me feels it is important to hear what others have experienced, learn from these experiences, and also hear about how the disease progresses in others. This young man was a very active person, played ice hockey,and looked like the picture of health. It is hard to believe how someone so young and full of life, could be losing his life now in an ICU, almost two years after diagnosis. It goes against the natural order of things in the world! When this happens, it makes you reevaluate everything. This teen's story truly bothered me all day, because no matter how similar or different his case may be from Mattie's, as a parent, you can't help but reflect on this and say this could be me in a year or two. I had a hard time shaking this feeling all day. My thoughts and prayers go out to this young man and his family, because no words could possibly make this situation better.

Mattie had two special visitors this morning. Tamra and her daughter, Louise (an SSSAS senior), came by to visit Mattie. Louise recently went with her family on a trip to Texas. While there she thought about Mattie and brought him back an adorable stuffed animal. One he has never received before, a red, white, and blue armadillo! Louise also gave him a great t-shirt, which says, "don't mess with texas!" This is a great shirt for him, because in reality I translate the shirt to mean... don't mess with Mattie! Thank you Louise for thinking of Mattie and for brightening his long day in the hospital!

When I arrived at the hospital this afternoon, Peter and I were on a mission to change Mattie's central line dressing. We normally change it every sunday, but literally we hadn't done this since Mattie was in the hospital. This was causing major havoc in the PICU. Apparently we are not being compliant with hospital policies regarding dressing changes. Technically we are required to change Mattie's dressing every other day (since Mattie has a unique dressing because the typical dressing change material gives Mattie dermatitis), but if you were involved in a dressing change, you would then understand why we only do it once a week. I can't do it alone, it takes both Peter and I to manage this. Mattie lands up doing a lot of screaming and crying, because it is hard to get the adhesive tape off of his chest to clean the area where the central line is going into his chest. It isn't a fun process. I have been getting so much pressure from the nurses to change it, so finally I wanted to put this issue to bed today! I am happy this is behind us, but Peter and I worked hard to accomplish this task. So far my once a week philosophy is working. Certainly if the dressing was dirty or falling off, we would change it immediately, but in all reality the less you touch the area and mess around with it, the better it seems to be for Mattie.

Mattie was thrilled that I brought in cupcakes today. I always make extras to bring to the nurses as well. I snapped a picture of Mattie with his cupcake and his new pal, the armadillo!

I sent Peter home late this afternoon. He needs a break away from here, and I told him, he should not feel any guilt about leaving us. Without a decent night of sleep now and then, neither one of us is going to make it. Mattie was lit up today like a light bulb. He was very active and yet unhappy being in the hospital, especially with the playroom closed and all the childlife staff gone for the weekend. I did take Mattie for a spin around the floor in his wheelchair. He refused to walk with his walker, and he is smart, because the deal he made with me was to use the walker to go to the playroom. With the playroom closed, he therefore sticks to the terms and conditions of his contract. No playroom, No walker! Mattie helped me do laundry today and of course while we were doing laundry, Mattie fed Linda's fish. Mattie loves watching the fish come to the top to grab the food, and to guess which fish will get more food.

Mattie and I watched the movie, Paulie today. Paulie is about a talking bird. Should be cute, should be funny, right? Well I landed up crying. The bird had quite a journey from being separated from the owner he loved, to helping a woman who is blind, to eventually landing up in a research laboratory and studied extensively because he can talk. Fortunately the movie had a happy ending! After the movie, Mattie and I played Mouse Trap, played with his cars and track, and then did some craft projects in the room. We even went on line to Lego.com and had our first experince with the Lego Digital Design center. Jenny told us about this, and we wanted to check it out. Basically you can design things with legos, virtually. Mattie enjoyed it, but it takes getting used to this form of building. It is not like manipulating the real bricks. It is now 11:30pm, and Mattie is wide awake, and I am trying to get him to wind down. I am trying to keep my head up and my eyes open in the process.

Needless to say, I am not sure how Peter and I are going to entertain Mattie tomorrow. What Mattie really needs to do is go home, he told me as much tonight. He needs a change of pace and his own toys for a couple of days. We want to thank the Bower family for a wonderful and tasty dinner tonight. We appreciate all your support. I end tonight with an e-mail I received from my friend, Charlie today. Charlie wrote, "Needless to say, I was so happy to see things back on a positive note for Mattie. As always, it seems to be the small things that we take for granted (food, conversation, caring touch) that help make the day go well. The nurses are clearly the heroes (heroines) of this story with their constant attention and concern for the well being of the patients as well as the parents. Nurses have their fingers not just on the physical pulse of the patients but on their emotional pulse as well. It is clear that the HEM/ONC nurses are really expert at that. I am so glad you had the support of friends yesterday. This has been a long stretch in the hospital and it is unfortunately not over yet. Anything that eases that situation is wonderful. The better you feel the more emotionally stable Mattie seems to be. I hope today is as good a day!"

Friday, February 20, 2009

Friday, February 20, 2009

Quote of the day:

“To listen well is as powerful a means of communication and influence as to talk well." ~ John Marshall

Mattie had a good night of sleep and was only up once or twice throughout the night, but went right back to bed. However, Mattie couldn't get up this morning. He slept until 11:45am. Normally this would worry me, but Tricia gave me Mattie's blood work results, and it was clear that Mattie was anemic today and would need his third blood transfusion since he entered the hospital last week. We are on day nine in the PICU and counting!

Tricia always takes care of me in the morning, she brings me hot tea, and this morning got me cereal and a few donut holes. These little gestures can make all the difference to the start of a day. It is funny that on any given day we can either make it a pleasant or bad day for others around us, just by doing something as simple as smiling or even truly listening! The HEM/ONC nurses constantly do things that make my life in the PICU bearable. Even though Tricia was our nurse today, other nurses come by and always check in to say hi and find out how we are doing. Yes this could be part of their job, but I frankly don't think so. It is just the caliber of women who serve as our nurses. I think if I had this hospital experience earlier in my life, I would have seriously considered being a HEM/ONC nurse. Not that I love hospitals, I don't! Nor do I think their job is easy, but I admire their commitment, dedication, and love for their patients. Don't be confused by who does the majority of work in a hospital setting. It is a nurse!

Prior to Mattie awaking, Jey, Mattie's 'big brother' came by to visit with Mattie. Mattie was sleeping, so I spoke with Jey in the hallway. Jey and I spoke for some time, and Jey told me how much he respects Mattie for his courage, and outlook on life. Jey said that most adults couldn't handle what Mattie has survived. I agree. Mattie has massive scars on his body, three important limb bones removed and replaced, and all sorts of toxic chemicals floating through his body. Frankly I try to separate myself from this on some days, because if I truly reflect on the aftermath it becomes overwhelming. Jey told me that some day we will be very proud of Mattie for what he will accomplish, and as Mattie ages he will understand the sacrifices we are making for him now. Jey feels that good things will come to us in the future, and he was so passionate about this, that for a minute I almost believed it.

When Mattie woke up this morning, he had his oatmeal, said hi to Tricia, and then had a special visitor. Junko, a good friend of ours from SSSAS, came to spend the day with us. Junko even took the day off of work to be with us. What do you say about a friend like this? Junko and her husband, Tad e-mail me weekly, and have been there every step of the way for us. Junko's son, Kazu, is one of Mattie's first friends at SSSAS, the two boys met each other in camp the summer before kindergarten began. Some days I wonder how my life has amounted to this. Last year, we had the excitement of starting a new school and I had the beauty of watching Mattie develop in a wonderful kindergarten classroom. It is sometimes hard to believe that Mattie's classmates have moved onto first grade. For me the world is standing still, and I forget that others are developing, growing, and evolving without me/us!

Junko brought Mattie and I a wonderful lunch! Thank you for the Starbuck's teas! I love them. Normally I have no desire to eat anything in particular in any given day, other than chocolate, but when Junko asked me what I wanted today before she came, I said some sort of noodle. Junko also showered Mattie and I with gifts. Mattie received a beautiful wood based magic set. He doesn't have anything like this! I look forward to working with Mattie on these tricks. I feel like I have learned so much about magic from Bob Weiman, that I am now getting the hang of it. Junko also gave Mattie a starter kit of Bakugan figures. Neither Mattie nor I knew what these objects were, but basically they are action-figure warriors, that are tucked into spheres that pop open when they're rolled onto a magnetic card. Mattie loved them! But the major hit was a tin can that looked like it held candy, but in reality it was a trick can. When you turned the lid, a snake popped out. Well Mattie tried this trick on Denise, our social worker. Denise hammed it up, and then we kept pulling more people into the room for this trick. Mattie scared Tricia, Amy (another nurse), and Dan (Mattie's in home physical therapist). Dan came to visit Mattie in the hospital since he hadn't seen Mattie in a long time and wanted to reconnect. This tin is Mattie's favorite thing of the week! He couldn't wait to show it to Peter tonight! Junko spoiled me with some very special socks to keep me feet warm. She knew that Mattie had a pair like this and I told her that occasionally I will wear his socks because they feel good. Now I have several pairs of my own! Thank you!

Junko and Dan joined us on our physical therapy session with Anna and Marla (Anna's intern from GW). Mattie did stick to his agreement. He promised to walk from his room to the hallway/playroom and NOT use his wheelchair. He used his walker today and did it. He had a trail of people behind him holding his IV tubes and pushing the huge IV pole, but we were all so proud of his accomplishment! Once Mattie walked to the hallway he got to pick the activity he wanted to do. He selected animal water guns. Mattie loves to do this, because while walking around, he gets us all soaking wet. He loves to see us run around. I joke with Anna, that she is my best form of exercise in a day. Mattie spotted Linda while he was working with Anna, and Mattie sucked Linda into his therapy session. Mattie loves Linda, and if he could spend every waking moment with her, he would. Linda graciously joined along and she became an instrumental part of the therapy session. Mattie started squirting water at Anna and Marla. Anna and Marla were jumping around. It was a riot. Mattie then turned his attention to Junko and I. Fortunately Anna brought towels, because this was our only means of protection. Mattie walked around and squirted Dan as well. While this was happening, Linda temporarily disappeared. When she came back, this is how she looked!!!!! As you can see in the picture, Linda came armed and protected from Mattie's water attack. We were all hysterical, the emesis bin on Linda's head simply cracked me up. I really needed this humor today. You just feel better, even if it is temporary, to laugh! I love Mattie and Anna staring at Linda in the picture!

Mattie had a great time trying to soak Linda through her gown and mask. I just kept snapping pictures to try to capture the moment.

In the picture on the right, Anna is strategizing with Mattie on a way to get Linda all wet. Dan is behind Mattie getting a kick out of all of this!

Mattie was determined and literally caught Linda off guard and got her all wet!

Mattie sprayed anyone he knew who came down the hallway. He got his HEM/ONC nurses Kathleen (Who told us that she has heard so much about cockroaches from Mattie that she is now dreaming about them! I understand what Kathleen means) and Laura. Mattie even sprayed Debbi (our sedation nurse angel!). Mattie was loving it, but then got tired and needed to sit down. The fact that Mattie walked all the way to the hallway and did so much activity is amazing, since his ANC today was only 36 (it climbed from 12 yesterday), and he was anemic. Mattie had another great physical therapy week with Anna, and I am pleased with Mattie's willingness to move his body, though he still has fears, which he can't articulate, but it is evident in how he moves his body. Anna is exploring with us the option of getting a walking leg brace for Mattie. I had the opportunity to meet an orthotist last week, who designs custom braces for children.

Mattie decided he wanted to go to the playroom after his session with Anna. Mattie played with Meg (one of Linda's interns) for a while, so that I could have lunch. But after a little bit, Meg came to get me because Mattie wanted me to see the ice cream he made with Chris, the president of the Georgetown Chemistry club. Mattie saved me some ice cream and he really wanted me to try what he made. Mattie had a good time in the playroom, but then wanted to head back to his room. It was at that point that Junko came back from running an errand for us. She also brought back some wonderful cupcakes for Mattie. He demolished one immediately! Mattie then met up with Jessie. Mattie loves Jessie, and she inspires him to be creative, and Jessie stayed with Mattie for 45 minutes, while I went with Junko into the parent lounge. As if Junko did not do enough for us already today, she then massaged my shoulders and hands. After she finished with me, I realized that I do have a neck. I lost feeling in it a while back from all the stress I carry there. Junko and I then went back to Mattie's room, and we all had a good conversation together. We chatted about our cats and the funny things they do in our homes! Mattie loved it.

Mattie received a red blood cell transfusion at around 5pm. While this was happening he fell asleep. It was at that point, that Tad, Junko's husband, came by to visit with us and brought us a wonderful and generous dinner! Peter also arrived there after, and we all had a good time talking while Mattie was sleeping. Junko even gave Peter a back massage. I told Junko that Peter and I were in competition with each other to determine whose muscle knots were worse. She laughed and said with both of us, she doesn't know what part to focus upon first, since we are just so tense. We want to thank Junko and Tad for both taking the day off to help us today. This kindness and willingness to share your time is appreciated and won't be forgotten!

Tonight, Peter sent me home to sleep, and tomorrow I will send Peter home. Not that one day will do much for either of us, but we have to start somewhere. My mission tonight was to make more cupcakes. I will not be allowed back in the room tomorrow without them. Also I couldn't break my promise to Mattie. The deal is that each time he walks using the walker into the hospital hallway, he gets 10 pieces of cake. But we have agreed that a cupcake would be a better alternative. So his efforts today will be rewarded with cupcakes tomorrow. I feel it is important to hold up my end of the bargain.

Some of you may be wondering what happened with the e-mail I sent the director of the HEM/ONC practice at Georgetown. I wrote an e-mail to explain my level of disappointment with the contact isolation issue that unfolded this week. I made it clear that my concern wasn't a medical issue, but a psychosocial concern. I feel like I made a compelling case. Or at least it must have been compelling enough that the HEM/ONC doctors will have a psychosocial meeting to address these issues when the director gets back into the country. I think I did as much as I could with this issue, in the hopes that no other family at Georgetown will have to hear the words, "no big deal" ever!

I end tonight with an e-mail I received from Charlie. Charlie wrote, "John Marshall's quote may seem like a strange one to pick but it seems the blog was all about communication and communication failures. It seems some medical schools still are not teaching listening skills or else some physicians are resistant to learning them. Those doctors feel that what they have to say is so important that they have no need to listen to anything said by anyone else. We all need to steer clear of those doctors because at some point the information they refuse to "hear" will cause a patient great pain and suffering (or worse) that could well have been avoided. You ran into one of those yesterday and although I can tell you are already "on it," I suggest you be extra vigilant when dealing with medical personnel like this. I am still floored by the "No big deal" remark. Three weeks is a lifetime in the world of a child and so much more so in a child (and a parent) going through what Mattie is dealing with on a daily basis. I cannot believe he is so lacking in empathy that he has no feeling for this. He really should be banned from any children's unit."

Thursday, February 19, 2009

Thursday, February 19, 2009


Quote of the day:

"We cannot live for ourselves alone. Our lives are connected by a thousand invisible threads, and along these sympathetic fibers, our actions run as causes and return to us as results." ~ Herman Melville


Mattie had a decent night of sleep on wednesday. He finally went to bed at midnight. He was very excited from his visit with Jerry and Nancy last night. Their visit was the last thing he spoke about and the first thing he talked about this morning. Tricia, his nurse, knew that Mattie beat Jerry at 'Name that Tune,' and so did Linda and Jenny. Mattie was thrilled to see how the word traveled around the hospital!

Of course my main issue today was finding out about the stool cultures and tests. Mattie spent another day in contact isolation! It felt like we waited an eternity today to find out the results. I think Linda came to find me in the parent lounge around 4pm to tell me the good news. Mattie does not have any bacterial infections. I of course was happy about this, but I did not realize just how happy I needed to be by this news. I received an education today about what would have happened to Mattie if his results came back positive for C. Diff. Let me tell you it would have been a VERY BIG DEAL! Basically in a nutshell, if Mattie had C. Diff, they could treat it with antibiotics. That part is easy, but the part I did not know is that Mattie would then be in contact isolation for THREE weeks after the diagnosis! Well I was stunned and livid, because no one prepared me for any of this. Once you have been diagnosed with C. Diff, you are then followed for three weeks, and have to provide a stool sample once a week for three weeks. We would do this until the stool culture came back negative three times (meaning that no C. Diff is present), So during this time Mattie would remain in contact isolation. Actually this could go on for weeks in my guesstimation, especially if the cultures do not come back consistently negative three times in a row. Mind you Mattie is able to leave the hospital and live at home with C. Diff, but when he would come to the clinic or the hospital (which is every week), he would be in isolation. Well learning this information in piece meal made me very unhappy today. I am not the kind of parent who deals well with these kinds of surprises. Also based on Mattie's history and current emotional sensitivities, it would seem to make sense that alerting me so I could adequately prepare him would be vital.

So today I started composing a formal e-mail to the director of the HEM/ONC practice, because to me two things need to be sorely addressed. Despite my best efforts yesterday, the doctor on call today also used the terminology, "no big deal" with me. I corrected this doctor today and told him why it was a big deal to me. However, I could tell my words and comments fell on deaf ears. He could care less what I was saying, and frankly I think if he could keep all the children locked up in their rooms he would. Rather shocking coming from a person who wants to devote his life to curing children with cancer. So the first issue I have is how news is communicated to parents and their children. I also think it is VERY judgmental to say something is "NO big deal" to a HEM/ONC family. You would be surprised what constitutes a big deal to me after I have had little to no sleep in 7 months, had little to no exercise, and I could go on. How dare someone tell me anything about this nightmare isn't a big deal. The second and more important issue is I feel misinformed about the treatment and follow up with the C. Diff infection. I was lead to believe the treatment of such an infection would be simple, just change the antibiotic cocktail. I had no idea that the isolation would continue for three weeks. I feel this was something I should have been made aware of right away. I realize I can't prepare for everything, but once you start testing Mattie for something, I need to be made aware of the entire process, so that I can better prepare myself and set expectations for Mattie. I think asking a child to be in isolation (though I understand why it needs to be done) is very hard, especially when he is used to certain freedoms in the hospital. So it seems to me educating parents about the process will mitigate a lot of the feelings I am having right now.


Despite being quarantined to his room, Mattie had a super active day. He played with Linda, a volunteer, and Jenny today. He has a visit from Sally the story lady, and heard a wonderful story, which we acted out about a prince, a princess, and a dragon. Mattie played the dragon. Sally is just so gifted at bringing a story to life! This afternoon, Mattie also had a visit from Anna, his physical therapist. We learned that it was Anna's birthday today. With this news, Mattie offered Anna one of his cupcakes (a major gift, since he doesn't like sharing cupcakes!), and sang Happy Birthday to her. I took a picture of this dynamic duo together.


Anna, Linda, and myself had a very active physical therapy session with Mattie today. He got up and was walking around with his walker, and played various games. At one point there was even a bubble rocket on the floor in our room, and Mattie was stomping on the rocket, sending it in the air and bubbles were flying everywhere. I tried to capture the moment. In the doorway of the picture, you can see Brandon looking on at Mattie's progress!





For all of you who are following Brandon's story, he left the hospital today. He was discharged but still is having pain, trouble walking, and so forth, but we are hoping time at home will make him feel better faster! We will miss Brandon and his family deeply, but we are happy they can leave the PICU behind.

After Mattie's session with Anna, Danelle (a friend and RCC mom) came by to drop off lunch. Danelle had an absolutely brilliant idea today. She got Mattie breakfast foods at IHOP. She brought fresh waffles, eggs, and bacon. Mattie ate like a champ. He ate a half of a big waffle and a lot of bacon. It was a great lunch, and we actually sat down and ate lunch together, because he was motivated to eat. This rarely happens anymore, so it was wonderful to sit and have a conversation together. Thank you Danelle for this great and creative idea! It worked.


Jenny came by this afternoon, and Mattie built some more popsicle structures, and also worked on a box project. They also talked about a lot of different things. Having Linda, Jenny, and Jessie around really breaks up the day, because I would have lost my mind in the room for two days straight. However, even with help, I don't stray far from Mattie's room, because Mattie will sometimes ask for me, and therefore, I don't feel the freedom to leave. I am always in constant hyperalert mode, waiting for the next shoe to drop, or the next issue to advocate about! But the main problem is there is NO where to go on the floor for peace and quiet. If you are in the hallway, you are target for noise and conversation. There are times you just want to be alone, and in peace. This is something missing about the floor. Linda is working on a lego project in March, with the idea that you can design your ideal hospital out of legos. I know my ideal hospital would have a serenity room, a place where you can escape to without being disturbed.

This evening, I was visited by the Burt family (an SSSAS family). Chandini delivered us a wonderful Indian food dinner, and I had the lovely opportunity to meet her daughter's Charlotte and Isabella. They brought Mattie homemade cds with meaningful music to their family, cards, and an adorable webkin chicky. We enjoyed your dinner tonight, and this brought me back to my college days, since one of my roommates introduced me to Indian food. Funny how tastes and smells can bring you back in time. Chandini and her daughters said a prayer for our family and Mattie while visiting which was lovely! We thank the Burt family for their thoughtfulness and support tonight.

When Peter arrived after work, Mattie was eager to build a lego structure with him. But I can tell that Peter and I are both super tired tonight. Peter puts in a full day at work, and then a full night at the hospital. It is really too much and beyond any normal human endurance! I had to make some phone calls tonight, so Peter has been entertaining Mattie for several hours this evening. As for Mattie, he had another infusion of MTP-PE today. He handled that very well. No reaction. Mattie's ANC climbed today to 12. It has been holding steady at zero for a week now. I hope it continues to trend upward. But the doctor is telling me it will take a few days! This doctor also told me that Mattie really shouldn't be going to the playroom with his counts so low. I tell you, I just don't know how to handle this mixed information. Some of the HEM/ONC doctors allow Mattie in the playroom with a mask on when his counts are low, and others don't. Seems to me you want to book your hospital stay when you have a reasonable doctor on call! So though we do not have contact isolation anymore, while this doctor is on call, we have a different form of imposed isolation. As we head into friday, Mattie has more physical therapy in the afternoon, and then I believe Chris, from the Georgetown Chemistry Club is coming in the afternoon to work with the kids. I am hoping Mattie will want to participate.

I end tonight with an e-mail I received from my friend, Charlie. Charlie wrote, "I was really concerned when you emailed me that Mattie was going to be in isolation. I felt, as you did that he was already isolated from friends and family by being in the hospital and to further restrict his movements could be really traumatic. I was therefore thrilled to hear how well it was handled and how everyone pitched in to make the day pleasant for Mattie. He got in a good "dose" of physical therapy even in his small room. Just goes to show what determination and creativity can accomplish. In spite of that I hope the isolation doesn't need to go on too long and that you are "free" to move about the ward again soon. One other comment, I don't think you or any of us, are ever fully aware of our impact on others. You were complimented on your response to others at the hospital and yet it surprised you because you were in "mom mode." Often when we communicate with others we are unaware of the impact of that communication and of the way that it is delivered. While in the hospital, you and your family have felt this in both good and bad ways; it speaks highly of you that even when you are not consciously working to make a positive connection with others, you do so."

Wednesday, February 18, 2009

Wednesday, February 18, 2009

Quote of the day:

"The life I touch for good or ill will touch another life, and that in turn another, until who knows where the trembling stops or in what far place my touch will be felt." ~ Frederick Buechner

Mattie woke up in a good mood today and was looking forward to going into the playroom. It seemed like this could happen easily because Mattie had no MTP-PE administrations or blood transfusions scheduled for the day. I was looking forward to having a freer day. I don't know why I set myself up like this. I should know that things can't go smoothly for us. It is just not meant to be. Dr. Synder and two residents came in this morning and examined Mattie. Mattie rolled himself up into a ball and wouldn't cooperate with the examination, but Dr. Synder knows how to relate to Mattie. She got done what she needed to do. While she was examining Mattie the residents asked me if Mattie had any more diarrhea today. In fact, Mattie did have an episode about 30 minutes prior to their arrival. But I did not think much of this and of course cleaned up Mattie and did not save a specimen. Apparently this was Dr. Synder's first time hearing about Mattie's bout with diarrhea. The next thing I knew they told me that Mattie would have to be in contact isolation today because he could potentially have a contagious infection. It was almost too surreal. This means that Mattie is quarentined to his room and if hospital personnel come in the room they have to wear a gown and gloves. The residents and Mattie's nurse reassured me that this was not a "big deal." However, this did not sit well with me. So I processed this for a bit, and then asked to see Dr. Synder again. I wasn't even really thinking about myself. The fact that I was exposed to his diarrhea multiple times and cleaned it off of him and the floor. But I won't go there.

Dr. Synder is a very warm and empathetic doctor, so in no way did I want to chew her out, but I did want her to know that this quarentining decision had psychological and emotional ramifications (mind you the residents expressed NO concern about the diarrhea yesterday, so I felt ill prepared today with this pronouncement!). I also felt the need to let her know that the residents should be careful with the terminology, no "big deal." Dr. Synder explained that the doctors meant that this infection was not a big deal from a medical standpoint, because it could be treated. Wonderful! I am happy about this, don't get me wrong. But isn't it funny, that medical doctors do not necessarily see the bigger and more important issue in some cases...... the holistic and mental health ramifications for their decisions. Picture a six year old in the hospital for a week sick, after coming off of a prior week in the hospital undergoing chemo. Mattie thoroughly looks forward to leaving the room, after all our two by four of a room gets very confining quickly. So to tell a six year old who was looking forward to having somewhat of a "normal" day, that he is now quarentined and can't go out and play in the playroom, this is ANYTHING BUT NO BIG DEAL! I felt the need to clarify this terminology and to also let Dr. Sydner know that I was upset and unhappy. In Dr. Synder's usual fashion, she listened and understood. I get the feeling that she really appreciates the struggle we are living with Mattie. Not that any form of cancer treatment is easy, but Mattie's is particularly daunting! Dr. Synder did impress upon me the seriousness of Mattie's situation and that she wouldn't call for the isolation if it weren't needed. But she could understand my disappointment, and that is all I needed to hear.

Linda came to visit this morning and worked with Mattie in our room for several hours. Linda, Jenny, and Jessie rotated again today, and frankly I couldn't survive now with these long days without these fine women. Linda worked with Mattie on silk screen hoops (that are now hanging from our room ceiling), and then they created a large popsicle stick house. While Linda was with Mattie, I bumped into Dr. Cantor. Dr. Cantor, you may recall came back to work this week after being away on maternity leave. Yesterday was her first full day back, she was at the hospital for 24 hours. So this morning she was headed home to see her baby. However, she still made the time to stop, sit, and chat with me about Mattie. I asked her questions about Mattie's bacterial infection situation and she gave me enough information to know that I had to do more research on the internet about this. I am so impressed with Dr. Cantor as a resident, and her competency and the relationships she establishes with the families she works with.

Okay, so you are probably asking, why on earth is Mattie being isolated? Well Dr. Synder wants to assess if Mattie has a bacterial infection called Clostridium Difficile (aka, c diff). In a nutshell you can get this infection from being on high dose antibiotics (which Mattie is!), and the telltale sign is diarrhea. This bacterial infection is highly contagious to others, which explains the isolation. Here is the information I found through a google search: Clostridium difficile, the spore-forming, anaerobic bacillus that causes most cases of antibiotic-associated diarrhea. The organism is indeed infectious; it can easily be spread from patient to patient, and is now on the growing list of antibiotic-resistant organisms. C. difficile's toxins damage the gut wall, causing problems ranging from mild diarrhea to severe pseudomembranous colitis, toxic megacolon, and bowel perforation. Immunocompromised patients are among those at highest risk for severe infection. The organism known as C. difficile inhabits the gut of up to 70% of healthy newborns and 3% of healthy adults, so it hasn't always been considered a pathogen. (This may be why some practitioners don't consider it infectious.) The microbe's destructive nature emerged only after the use of broad-spectrum antibiotics came into vogue. During normal human growth and development, bacterial competitors crowd this slow-growing anaerobe out of the gut of the majority of people. Whatever C. difficile remains is held in check by the gut's normal flora. However, if the bacterial competition is killed off—which is what happens when patients are given broad-spectrum antibiotics—C. difficile can grow out of control and C. difficile-associated disease (CDAD) develops. Symptoms include loose, watery, and foul-smelling stools that smell like horse manure; crampy abdominal pain; and in most cases, fever. For antibiotics to "cause" CDAD, a person must be exposed to the C. difficile organism or already have the bacteria in his colon. Most people who come into contact with C. difficile do so during a hospital stay. Studies show that more than 30% of all hospitalized patients in the United States become infected with C. difficile. Of those infected, 60% are diagnosed after admission. However, we do know that narrow-spectrum antibiotics, such as metronidazole (Flagyl) and vancomycin HCl (Vancocin, Vancoled), rarely cause diarrhea; therefore, these two antibiotics are the drugs of choice for treating CDAD.

In all reality hospitals are scary places to be, because it is easy to pick up all sorts of infections here, and for a patient like Mattie who has a compromised immune system, this environment can be toxic. I encouraged Mattie the whole day to go to the bathroom again, because we needed a sample. I was worried he wouldn't go but he was very helpful. Needless to say, they tell me it will take 24 hours for this culture to reveal information from the stool sample. Lovely!

We want to thank the Bentsen family for a wonderful lunch today. The quiche was delightful as well as all the other goodies. We really appreciate the Bentsen's support and their willingness to help us today. At around 2pm, Anna, Mattie's physical therapist, came into Mattie's room. They had a great session. Mattie now freely accepts Anna, and Anna worked on stretching out Mattie's right leg, since in a way he has frozen his knee in a bent position. Mattie doesn't even realize his leg is being stretched, because Anna was blowing up balloons and Mattie was sticking clothes pins on the balloons to prevent the air from leaking out of them. Matie was engrossed. They blew up about 8 balloons, and Mattie used both hands to reach, grasp clothes pins, and attached them onto the balloons. Anna then put the balloons on the floor around the room, and Mattie had to walk to each balloon. Every time he got to a balloon he could unclip one clothespin off the balloon. The competition was to see which colored balloon stayed inflated the longest. Anna guessed a blue balloon, I guessed a pink balloon, and Mattie guessed a white balloon. Mattie did win!, But he was moving around the room, and Mattie agreed that in the future he would walk to the playroom at the hospital using his walker and not his wheelchair. Anna and I are trying to move away from the wheelchair and build up Mattie's stamina. The session continued, when Jenny walked in. Jenny, Anna, and I pretended we were in quicksand, and Mattie had to walk over to us and save us by pushing us with his legs out of the sand! Needless to say, I am very pleased with Anna's progress with Mattie and this only confirmed to me, the importance of a therapeutic alliance. Anna has built it up, and now Mattie is more willing to try what she presents him. Excellent!

Jenny worked with Mattie on the popsicle house. They had a good conversation with each other, and Mattie told Jenny about the significance of his name (Matthew, gift from God!). Jenny and Jessie tag teamed. When Jenny left, Jessie entered. Jessie worked with Mattie on another ceiling tile for the clinic. Mattie did a Scooby Doo tile with Peter and I before, but today, he chose his most favorite creature to work on. Can you guess it? Yes the cockroach. Let me tell you, right now in our room I have a four foot long cockroach. It is thoroughly disgusting. I took a picture of this thing, but the roach caught a lot of peoples' attention today. I mean, how many people paint a four foot long cockroach?! In the picture, you will see his small model magic cockroach in the lower right hand corner, to give the large guy scale. In the upper right hand corner of the painting, it is a picture of me, SCREAMING at the sight of the cockroach!

I am not sure who I feel more sorry for, the fact that this painting is temporarily in my room, or that this roach will actually be hanging on the ceiling in the clinic for sick children to stare up at!?

This evening, Elizabeth (a wonderful mom we met from Mattie's soccer team) came to visit me to drop off a delicious dinner to us. We want to thank the Murphy family for a tasty dinner, I fell in love with the chicken puttanesca and Mattie really loved the Magic Treehouse book series, valentine's treats, and the special knight and castle puzzle book. In fact, Mattie did each puzzle tonight with Elena, our HEM/ONC resident. They connected over that. Thank you Elizabeth for the support and your generosity.

Katie, was Mattie's nurse today. Toward the end of the day, she started massaging Mattie. It was such a cute and sensitive sight, that I snapped a picture of them together. Katie instantly calmed Mattie down! Katie is another sweetheart. She is a wonderful HEM/ONC nurse and is another nurse who knows how to deal with Mattie's up and down moods. We also had a visit today from Sarah Marshall. Sarah Marshall is a fabulous HEM/ONC nurse, and I so admire her as a cancer survivor. I was in such a state today over Mattie's potential bacterial infection that I mistook Sarah Marshall for Katie and started to ask her questions about Mattie's treatment when she came to visit us. It was embarassing, but I swear there are times I am so tired, that I have to snap myself into consciousness.

Tonight, Jerry and Nancy (the dynamic duo volunteer music team) came by to entertain us. We just love both of them, and Jerry is the fellow who generously gave Mattie a keyboard in the fall. Jerry and Nancy played 'Name that Tune' with Mattie. They wanted to "stump" him. Literally Mattie got all 38 songs correctly. Jerry hammed it up, and Mattie was loving the fact that he stumped Jerry. Dr. Toretsky came by tonight to visit with us, and I think he got more than he bargained for. Mattie was TOTALLY on and animated. Not a Mattie you always see now. But music and art are our modes of therapy. They work and he would be lost without them. Mattie was singing tonight and also popping cupcakes in his mouth. I took a picture of him putting an entire minicupcake in his mouth at one time!

NEWS FLASH!!!! Look at the left arm! It is NORMAL! Mattie slept in another contorted position last night, and rotated the arm back into place. I was SO THRILLED TODAY. I am sure Dr. Bob would share in this victory. I am sure it could rotate again, but the fact that Mattie could get it back into place was a magical sight for his mother's sore eyes. I needed something positive today!

Jerry and Nancy perked Mattie up so. In fact, Mattie wanted Jerry and Nancy to tell the nurses, doctors, and Brandon about the fact that Mattie was able to stump him. It was big news on the floor tonight. In fact, I told Jerry that once he delivered this exciting news to Brandon, that Brandon's mom, Toni should knock three times on the wall so we know she heard the news. I am happy to report we heard three knocks. I of course am saddened that Brandon is still in the hospital, but I can't tell you how wonderful it is to have another family that I can relate to and turn to.

In the midst of all this today, I also had a delightful conversation with a student I met at the hospital. She is interested in becoming a therapist, and we chatted about her educational options. She pointed out to me, that she has observed me through her semester and she admires what I do for other people. I must say I was stunned to hear this. Mainly because I am very focused on Mattie and to me this has become all consuming. Yes professionally I may be a mental health counselor and educator, but in the hospital, all these roles fall by the wayside. In the hospital, I am 'mom!' In any case, I felt truly flattered and it is funny how a nice comment when you are feeling down can turn your outlook around.

Peter came in from work tonight and found a full house in Mattie's room. Peter had a good time singing with Mattie. Peter has a beautiful voice, you should get him singing one day. That is how we met in college we were both in choir. I am so happy that we have passed our love for music along to Mattie. Peter also surprised Mattie with a gift a colleague of his brought back from Africa for Mattie. It is a beautiful gorilla set! Mattie loves it. I then left the room, because I had a professional conference call to make tonight. In a way, the call was a blessing, it got me out of the room and to have a minute to myself. Thankfully Linda helped secure me a quiet place, because it is like grand central station if you work in the hospital hallways.

So what does thursday hold for Mattie? I am not sure. But I do know that Mattie's absolute neutrophil count is still ZERO and he will be getting another MTP-PE infusion tomorrow, along with PT. Please keep your fingers crossed that we are not also contending with the c. diff bacterial infection. I sign off for the evening with the e-mail I received from Charlie today. Charlie wrote, "I have a lot of thoughts about yesterday's blog. First, about Mattie's unwillingness to have people from his outside life spend time inside the hospital. Children do a lot of compartmentalizing especially when things are not going as they wish. I wonder if Mattie feels that allowing people from outside to work and visit with him in the hospital means that he won't get to work with them outside, that they will become part of the hospital people for him (i.e. rather than Mattie getting to go out to school, he will have to go to school in the hospital) especially since this admission seems so long. I also wonder if there isn't some resentment of those people's ability to leave the hospital when they wish, unlike all of you who have to stay there. If Mattie tells them to go, he is in control of the situation; this makes those people more like him. Other people (doctors, nurses, etc) tell him to be where he doesn't want to be, so he gets to tell someone else the same thing. People who tell you Mattie is "mean" just don't get it. They obviously missed the class where medical personnel have to play the patient and are told what to do, have their preferences ignored, are discussed as if they were not in the room, have to walk around clothed in something that is clearly for the convenience of the caretakers and not even get to choose what or when to eat. That of course does not include taking medications, being in pain and having to try to sleep in an environment where a good night's sleep is impossible. A day or two of that is both eye opening and humbling for most health care personnel. You and Mattie have done a lot to educate folks but you can only reach so many and they have to be open to listening. Just like some mental health clients, not everyone is willing to hear and change."

Tuesday, February 17, 2009

Tuesday, February 17, 2009

Quote of the day: "Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever." ~ Isak Dinesen


Mattie had a decent night of sleep on monday. He was up a couple of times going to the bathroom, but other than that, it was a quiet night. I arose this morning at 6:30am, so that I could take a shower in peace, before people started coming in and out of the room, which can happen as early as 7am. Taking a shower here is always a fun experience. It takes a good 10 minutes for the water to turn hot, and the shower nozzle is so old that it feels like you are taking a shower under a dripping garden hose.

Tricia was Mattie's nurse today, and she allowed him to go to the playroom early in the morning, because she knew he would have to be in his room during the afternoon for his platelet transfusion. Jey, Mattie's 'big brother,' came to visit Mattie and he helped us to the playroom. Once we got to the playroom, Mattie was out of sorts. He was grumpy and demanding. He also couldn't figure out what he wanted to play with. After about 15 to 20 minutes debating back and forth about what to do, Mattie finally played with cars in the playroom, and even designed his own race track on paper. He gave the track some thought. While he was playing there was a two year old in the room with us. She wanted to play with Mattie, but he did not want to have anything to do with her. As a typical two year old, she kept coming over, sticking her face into Mattie's play space, and even grabbing his toys. At one point, I thought he was going to explode. I tried to explain to him that she is smaller than he is, and that she looks up to him and wants to play with him. But that explanation only bought me some time.

As we remained in the playroom, Margaret came by to visit us. Margaret was Mattie's first preschool teacher at Resurrection Children's Center. Like all of Mattie's friends from his outside world, he greeted Margaret with hesitation and agitation. Margaret gave Mattie a game, and that seemed to take his mind off of his tension. They played for a while, and then we headed back to his room for his transfusion pre-medications. Margaret continued to chat with Mattie and was making some head way with him, but none the less, Mattie was super edgy. The irony is at one time, Mattie was very close to Margaret. Not that he still doesn't feel a level of fondness for her, but cancer has profoundly changed Mattie. It is a combination of things, but there are very measurable emotional consequences to having cancer, and these consequences have taken their toll out on Mattie. In many ways he has regressed to having three year old like behaviors when it comes to coping. Margaret gave Mattie some wonderful linzer cookies in the shape of hearts, and Mattie later ate one in the afternoon, and enjoyed it. Thanks Margaret for the visit, and for trying to give me a break today.

At lunch time, Liza (an SSSAS upper school mom and now friend), came to visit and brought us a wonderful lunch. Liza gave Mattie's lunch a great deal of thought. She literally put his lunch in a special blue bag, and gave him a whole bunch of things like butterfly pastas, pears, applesauce, and a whole bunch of other goodies. Mattie literally ate some pasta, all the applesauce, goldfish, and some pears. It was the most I have seen him eat in a LONG time! It was thrilling, even Tricia was impressed. Great work Liza. Liza made me a phenomenal carrot soup and a chicken salad. There wasn't anything left to Liza's lunch after Mattie and I got through with it. The carrot soup needs to go into Mattie's recipe book! However, Liza also gave Mattie an adorable Valentine's bag with a game and a book in it. Liza inscribed the book for Mattie, because it is a family favorite. The book is entitled, "Love you forever." While Mattie was eating today, I read him the story. The story brought me to tears. Mattie thought I was an absolute riot. He in fact had me read the book twice because he said he wanted to see me cry again. I highly recommend this story, it is so touching. Basically it is a story about a mom and her son, who she raises from a baby to adulthood. Every night she sings him a special song ("I'll love you forever, I'll like you for always, As long as I'm living my baby you'll be), and even when her son becomes an adult she still feels her son is and will always be her baby. Toward the end of the story, you see the mom as an older person, and very sick. The son comes to visit her, and rocks and cradles her with the song his mom taught him. It was touching, and speaks to the love between a mom and her son. But I think it caused me to take pause, because I realize with Mattie's illness I may not have the opportunity to see him grow up the same way as the little boy in this story.

I had a revelation today about Mattie. Mattie was agitated with me, and he really disliked hearing the conversation in his room among myself, Margaret, and Liza. At one point, he told Margaret and Liza that they both had to go. In fact, he was so bold to say he "hates people." I have to tell you, even though I can put what Mattie is saying in perspective and I empathetize with what he has and continues to go through, I too am human, and his behavior can be embarrassing and I feel it is a poor reflection on me. In fact, there are some people at Georgetown who have mentioned to me that Mattie is "mean." I view these folks as ignorant, because they have no idea what Mattie has survived and is overcoming. I would like to see any adult deal with 9 months of chemo and two major surgeries which involve taking out and replacing bones in three limbs! I have no doubt they wouldn't be the same person who entered the hospital prior to all this treatment. Margaret and Liza did accomodate Mattie's wishes, but his possessiveness and desire to isolate us isn't easy in any stretch of the imagination. But here is the revelation. While Margaret and Liza were leaving the room, Jenny and Jessie entered. I told Jenny that I did not think Mattie wanted any company at that moment. But Mattie surprised me, he wanted his friends to leave, and he wanted Jenny and Jessie to stay. So it appears to me while Mattie is in the hospital, he really can't relate to his outside world. When the outside world comes in, Mattie becomes agitated and it is almost as if he needs to shut down to protect himself. I try to understand this behavior, and I can only assume he does this because he feels that friends from the outside world (outside the PICU) do not fully grasp what he has and continues to deal with. I don't know if there is any credence to this theory, but I am exploring it further.

Jessie worked with Mattie today in his room while he was getting a platelet transfusions. The transfusion went very well, thankfully. This is his second platelet transfusion since he was admitted last wednesday to the hospital. We are going on ONE week now. Jessie brought Mattie a large cardboard canvas to paint with today, and Mattie painted with his hands and feet. You should have seen the mess Mattie was making and the sheer joy in this mess! I took a picture of Mattie's beautiful and creative painting. I asked Jessie if she directed the painting and she said it all came from Mattie. I love his tree and his smiling sunshine!


While Mattie was painting, one of the PICU staff came out in the hallway to find me. Mattie has a case of diarrhea today from all the antibiotics. It is a bit explosive, I experienced this in the morning. But this afternoon. Mattie did not make it to the bathroom in time, and it was on the floor, on Mattie, and his clothes. Jessie did a good job containing it, and I finished up the clean up.

After Jessie worked with Mattie, Jenny came up from the clinic and took over. She brought Mattie to the childlife playroom and they started working on creating popsicle boxes. You got to love watching Mattie with a hot glue gun! Mattie had a good time with Jenny, and then Linda took over. Linda says she always enjoys her "Mattie time!" Jessie, Jenny, and Linda were VERY well coordinated today. They really tried to give me a break, even though I know I can't go far, because there are times that Mattie just needs me. But I have NO idea where I would be without these three ladies. They are phenomenal.

Throughout the afternoon, we were also worried about Brandon. Brandon had a terrible afternoon of pain. It is hard to see another family going through this pain, because in a way, it only compounds what you are feeling. It is my hope that Brandon has turned a corner tonight and will continue on the upswing. I think this surgery and pain was a major letdown for Brandon. He thought his treatments were over, and that he could close this chapter on his life, but he got more than he bargained for.

This evening we had a visit from Gibby Earnest. Gibby is Mattie's librarian at SSSAS. I know Gibby personally, because last year I volunteered in the lower school library and had the opportunity to work with Gibby. We want to thank Gibby for a wonderful chicken casserole and goodies. We also want to thank Gibby for the book, "How to be a pirate?" Mattie and I enjoyed reading and looking at the pictures. He has determined he wouldn't make a good pirate. When Peter arrived tonight after work, Mattie was thrilled to see him and together they got into a snake series on the animal planet. They are both grossing me out with this whole topic. It is nice to have Peter back tonight, but I am convinced now that we will have to switch off occasionally staying over nights in the hospital when Mattie isn't getting chemo. This will be the only healthy way to preserve us!

In terms of Mattie, his absolute neutrophil count is still ZERO. He had a platelet transfusion today, and is holding steady. He will not be released from the hospital until his counts reach 500, so we have a way to go still. Wednesday he will be resuming physical therapy, he has been unable to do therapy because he has been too weak, and of course on thursday, he has another administration of MTP-PE.

I end tonight with an e-mail I received from Charlie. Charlie wrote, "It is clear that the roller coaster ride of cancer treatment continues. I don't know any other one thing that seems to sum it up as well as a picture of a coaster. The ups and downs, twists and turns are beyond belief. It seems all you can do is hold on tight and look for the next hill or the next turn and try to anticipate as much as you can and "lean into it". I think you are Mattie's safety gear/seatbelt for this ride and that is why he clings so tightly to you. The other reason a coaster comes to mind is because you talked about how you are outside of normal time. I remember feeling that way on a ride; some moments were long, others amazingly fast and when I got off I had no idea how much time had passed. I hope at the end of this ride, when you, Pete and Mattie look back, you remember your time as a family, with multiple bright spots for the love and support of friends and extended family and that the pain and trauma of it becomes just a short "blip" on the long road of health and joy."

Monday, February 16, 2009

Monday, February 16, 2009

Quote of the day: “Laughter is the spark of the soul” ~ unknown

Peter told me that Mattie awoke at around 3am today, but this time he was able to get Mattie back to bed. Jey, Mattie's 'big brother,' came by and gave Mattie a "circle of life" bracelet he made out of rubberbands. The funny part is Jey came by while Peter was in the shower and I was at home. But when Peter came out of the shower, Mattie told Peter all about this special bracelet and conversation he had with Jey. Jey always finds the time to come by to check on Mattie each day! Later in the morning, Meg and Laura (Linda's interns) visited Mattie and played with him. They helped Mattie create some wonderful new additions to his bi-plane. Also just so our growing toy lizard, who sits in a washbasin in our room, doesn't get lonely, Laura added a large green slimy worm to the mix. Mattie is loving it! So things continue to develop in Room 10! I arrived at the hospital around 11:30am. With me I brought a whole baking dish of cupcakes. I knew I wasn't going to be allowed back in the room without these pink cupcakes today. Mattie was thrilled to see the cupcakes and has literally ate about six in total so far.

Mattie's status is the following. His absolute neutrophil count is holding steady at ZERO! Today Mattie's hemoglobin level was very low, so he received another blood transfusion. This is the second one so far for this hospital stay. He is scheduled for a second platelet transfusion tomorrow. The pre-medications for the blood transfusion (pre-meds are given to avoid any negative reactions to the transfusion), knocked Mattie out. He slept for about two hours or so. While Mattie was sleeping, Evelyn came to visit us. She brought us a lovely lunch and dinner. Evelyn sat with Mattie for over an hour while Peter and I had lunch in the parent lounge and got a chance to catch up. Thank you Evelyn for the wonderful foods and the time to get out of the room together. Mattie loves the valentine and his heart shaped cookie! Thank you also for the wonderful homemade jambalaya and the Starbuck's iced tea! All of it was very tasty, and the fresh fruit is ALWAYS so appreciated. We are so thankful for your whole family's support.

On our way back to Mattie's room we saw Dr. Cantor. Dr. Cantor is one of our favorite residents. She was on maternity leave for the past three months, and we were so happy to see her back and to hear about her baby, Nathan. I hate to say it, but time means nothing to me anymore. I have no sense for it either. On some level seeing Dr. Cantor and Erin (our nurse) come back from their leave helps to put time into perspective for us. It marks the fact that months have past. To me on some level it feels like they just left. I am trapped in some sort of time warp, and I have no idea when Peter and I will break free.

When Mattie woke up from his nap he was restless and wanted to do something. However, he couldn't leave the room because he needed an MTP-PE administration. Erin was Mattie's nurse again today, and she was prepared with demerol just in case Mattie had the same reaction to MTP as he did on friday. Erin monitored Mattie closely, but he handled MTP-PE very well. In fact, Erin allowed Mattie to visit the playroom around 4pm, and Miki came in every half an hour to take Mattie's blood pressure and temperature. It was very nice of the nurses to allow Mattie to go to the playroom. It certainly adds to their workload of running back and forth from the PICU to the playroom, but they understand that Mattie needs time away from his room.

Mattie wore a mask while in the playroom, and he played with Liza (one of his favorite volunteers) and Linda. Mattie's buddy, Charlotte, came for a visit too. Mattie and Charlotte played with model magic, and Mattie is adding all sorts of model magic bugs to his "bug house."

You can see the bug house on the left. It is still a work in progress. I also snapped a picture of Mattie and Charlotte in conversation over the box.

However, I have to admit that Mattie wasn't the best company today. He was very demanding and grumpy and in all reality wanted to play independently. Charlotte dealt with this very well, and Linda helped to pull out activities that Charlotte wanted to do while Mattie was engrossed with his bugs. The irony is that I could tell that even though Mattie wasn't playing with Charlotte per se, he still enjoyed her presence. Their playdate ended with them playing some games on the childlife Wii. I am in amazement how well little kids take to this technology. They seem to just get it, whereas I on the other hand can't even follow the instructions. I chalk it up to being overly tired! Mattie and Charlotte even had cupcakes together in the playroom! It was nice to see Charlotte and Ellen (Charlotte's mom) today.

Peter went home tonight to get some rest. Believe it or not, this is my very first night alone in the hospital with Mattie. Peter has done overnight stays without me, but I have never done this before. To some extent it is daunting for many reasons. One of which is I am simply exhausted, and I know I have several more days ahead of me. It is hard to do days and nights solo. The resident today was trying to prepare me for several more days in the hospital this week, and you have to remember that Mattie begins his next chemo cycle this coming monday! God give us strength. Tonight was a pip of a night! Unlike how Mattie fell asleep early the passed two nights, that did not happen for me. In fact, I just got him to sleep at 11:30pm! But he put me through my paces tonight. At one time I literally wanted to throttle him. He had me bouncing around looking for games to play and puzzles to build. But mind you anything I brought back to the room, he did not want to play with. I went back and forth about four times, the nurses were just watching me. Even Melba, our night nurse, was empathetic to my plight and tried to work with me to figure out what Mattie wanted to do. Finally I got him in his wheelchair and brought him to the childlife cabinet to pick something out. But there was NOTHING that caught his attention. Then he started on me about a game we played a day or so ago. He described it to me, and it sounded vaguely familiar, but I did not recall the name. It is like I have memory failure, because I can't remember playing the game, or even where I saw the game, and so forth. But he was adamant with me about me finding this game. I looked high and low for it in the hospital. Then I simply gave up! Mattie was thoroughly disgusted with me, and said he wanted Peter back tonight instead of me. I was so frustrated that if I could have accomodated him, I would have! Finally I was able to redirect him (which ISN'T easy if you know Mattie) to making sock puppets. We made a snake puppet together and then we read several chapters from a delightful book entitled, The Mouse and the Motorcycle! I then massaged Mattie's head and finally he fell asleep. I really worked hard tonight, and now I just sit here and think to myself.... you have got to be kidding?! I have to do this all over again tomorrow, and tomorrow, and tomorrow, and the days and weeks after this!

As I sign off for the night, I leave you with an e-mail Charlie sent me today. Charlie wrote, "Laughter seemed to be the theme of the day yesterday. A nice change to see Mattie happy and enthusiastic. I wonder where he gets this supply of energy; if we could tap it, we wouldn't have an energy shortage in this country. Once again, Mattie's spirit continues to amaze me, his count sits at zero and he was so ill just a couple of days ago and now he is celebrating Valentine's day and enjoying his cards and lollipops. May he continue to be pain free and happy and enjoying all the things he has available until he is able to resume life as a "regular" boy, off to school with friends. (my husband added: may your words reach G-d's ear). I am glad you had a break although as you said, the exhaustion is now so deep that a few nights sleep doesn't come close to filling the need. May today be a better day."

Sunday, February 15, 2009

Sunday, February 15, 2009

Quote of the day:

"We never know the love of our parents for us till we have become parents." ~Henry Ward Beecher

While I was home resting on saturday night, Peter had his hands full in the hospital. Mattie woke up at 4:30am, and was WIDE AWAKE. Mattie was chatty, wanted to play, and was ready to start the day. I am not sure how Peter handled this, I would have had a fit. Peter was able to convince Mattie to stay in bed and watch TV. Fortunately the PICU finally changed their cable network, to include 24 hour children's TV, which helps tremendously. So Mattie watched TV through the wee hours of the morning. When Sarah Marshall, Mattie's nurse, came in to take his vitals at 5am, Mattie invited her in and was lively and animated. Apparently Peter tells me that Sarah Marshall couldn't get over Mattie, and she thought he was an absolute riot. Like the life of the party!

So Peter's day started early! With each day that Mattie remains in the hospital he gets more and more bored, restless, and stir crazy in his room. No amount of toys and activities can keep him busy, and this gets very challenging to manage. So I have no doubt Peter worked super hard today. I spent the morning and part of the afternoon at home. I had a lot of things to catch up on from laundry to sorting through some things I wanted to donate to Linda for the childlife room. I felt I was very productive, but while away my heart is always in the PICU. This afternoon, Ann, Dr. Bob, and their three children came over. Bob has a wonderful camera, and he generously offered to take a professional quality digital picture of Mattie's "Mr. Sun" painting. I needed this quality picture in order to create Mattie's walk-a-thon t-shirt design, as well as for the creation of an osteosarcoma stamp. As you all know Bob is Mattie's surgeon. I wonder how many surgeons you know make house calls, and also take pictures in order to generate fundraising items? I would gather NOT many! When Ann came over today, she brought me two large shopping bags full of valentine's day cards and cookies for Mattie. We want to thank the Junior Girl Scouts Troop at SSSAS (Troop 168) for giving Mattie two cases of girl scout cookies. That was so thoughtful and generous of you. Mattie loves your cookies!

When I arrived at the hospital, I was so happy to see Erin, a HEM/ONC nurse. Peter called me and let me know that Erin was back after a two month leave. Erin was one of the first nurses I got to know. She is a pure delight and so empathetic. There were times during the initial stages of Mattie's treatment when I looked shell shocked and Erin would just hug me. One time she even massaged my neck. Erin is also the person who taught me how to care for Mattie's central line. She did an excellent job, because thank God Mattie has yet to have a central line infection! When Erin told me she was going on leave, I was saddened by this. When I saw her today I gave her a big hug and also gave her the Christmas present I saved for her. I am sure being away on travel to such places as Hawaii and then coming back to work wasn't easy for her today, but Brandon (Mattie's big buddy) and I were thrilled.

When I entered Mattie's room this afternoon, he gave me a big greeting, and was very excited to see ALL of his valentine's day cards and goodies. At one point he was surrounded by valentine's! We read each beautiful card together. All four first grade classes at SSSAS gave Mattie cards and Debbie (Mattie's art teacher) also had her students design beautiful heart cards with special messages inside for Mattie. These cards put a special smile on his face. He felt remembered! After all, never forget the profound level of isolation Mattie lives. He doesn't do what other children do on a regular basis, and in these times of isolation it is easy to feel forgotten! These cards, may sound like a simple gesture, but they however are wonderful connections to the outside world. The world of normalcy and other children. I took a picture of Mattie with his cards, and one of his favorite items in the valentine's day box was this HUGE lollipop, from his buddy Missy. This lollipop was a hit. Mattie couldn't get over how large the lollipop was, and he even called Erin in to check out the lollipop. Mattie gave Erin a regular lollipop for valentine's day, and he loves comparing the size of her pop versus his!

Then Mattie decided to hop into his wheelchair and show off his lollipop to Brandon and the PICU staff. Mattie was simply thrilled. He had the residents touch the lollipop and also guess what flavor it was. He was so animated, and it is a moment in time I won't forget. Because for that instance, all I could hear was a child being a child! With childlike joy and laughter. Despite of course the simple fact that I was pushing his wheelchair and his gigantic IV pole, which always grounds me back to Mattie's disease. Mattie and I then went out into the hallway and were headed to feed Linda's fish. Mattie is adamant about feeding these fish on the weekends. While in the hallways we bumped into Brandon's mom, Toni. Toni walked with us and we got a chance to talk. Brandon is still in the hospital, and continues to be in great pain. It is ironic that Brandon came in for an appendectomy and he lands up being in more pain from this routine surgery than any of his chemo infusions he had. We pray that Brandon feels better soon.

WhenI arrived at the hospital, I sent Peter home. He needed a major break, and I played with Mattie for several hours. We did all sorts of activities, but landed up playing with his lego pirate ship. Mattie was playing with the parrot lego that was attached to the lego ship. Mattie literally brought this parrot to life. What I found fascinating was at one point, the parrot died. I wasn't sure how that actually happened in his story, but Mattie hid the parrot behind his back and said that something happened to the parrot and caused it to died. So I decided to play along. The lego characters I was playing with became sad and talked about how they missed their parrot friend. Then all of a sudden Mattie started making the sounds of the parrot. I asked him what was happening, and he told me the spirit of the parrot was coming back to be with his friends so they wouldn't be alone. I was taken a back by this whole scenario of play. It seemed quite deep, but I see on some level Mattie is trying to process what happens to all of us once our bodies die.

Peter came back this evening and while Peter and I were talking with Erin in Mattie's room, Mattie fell asleep right next to me. So Mattie was out by 6:30pm. I feel for Peter, because this has the potential to mean that Mattie will be up very early. Peter gave me another night at home, which is a total gift. I am so wiped out that even two nights at home I am not sure will make that much of a difference. We want to thank the Wendt family for a wonderful gift certificate tonight to take out taxi. I thought the Wendt's provided us with dinner on friday night, but I got my days all confused. Thank you Donna, my cousin who lives in Boston, for a lovely dinner on friday and supporting us from afar.

I headed home tonight with a mission. My mission was to bake cupcakes and mini cupcakes for Mattie. He requested vanilla cupcakes with pink colored frosting. So our home smells of cupcakes, and while I am baking, I am also listening to music and typing this blog. Listening to music is something that I love to do, but do not get much of an opportunity to do this with Mattie around. He rarely likes noises of any kind around him. So even this freedom to do what I want tonight in my own home is a luxury.

I want to share an e-mail I received today from Charlie. Charlie wrote, "As I read Saturday's blog and also the comments I thought how true it was that in times of trouble we turn to our parents, especially our mother. I remember not understanding how much my mother loved me until I first held my son in my arms and then I was flooded with the knowledge of what it is to be a mother and to love unconditionally. I remember thinking I will do everything in my power to protect this child. I am so grateful that I have not been called upon to do what you are doing, and I am so in awe of how well you do it day after day. I know that when Mattie holds his own little one in his arms (may it come to pass, B"H), he will know everything that you and Pete have done for him in a way that surpasses our ability to put it into words. I am glad that yesterday was a better day, that you were able to get some rest and I hope that this day will be a good one for Mattie and you. (B"H is the Jewish "shorthand" for G-d bless or G-d's blessing.)"

I end tonight with two beautiful quotes about FAITH that I received from Louise (a senior at SSSAS, and a Mattie buddy). Under such trying times it is easy to want to give up faith and hope, but then I receive a beautiful message like this that awakens them for me!

“Faith is to believe what you do not see; the reward of this faith is to see what you believe.” ~Saint Augustine"

"What is faith? it is the confident assurance that what we hope for is going to happen. it is the evidence of things we cannot yet see." ~ hebrews 11:11