Saturday, December 20, 2008

Saturday, December 20, 2008

Quote of the day from Peter: “Victory belongs to the most persevering." ~ Napoleon

Isn't this picture the true spirit of Christmas? Tonight I went over to Ann's house and picked up this amazing wreath. This wreath was created by hand with love by Debbie Pollak (Mattie's art teacher at SSSAS) and the first graders at SSSAS. The wreath is comprised of paper flowers that have been colored and decorated by the children. Some are even signed. Debbie then arranged them together in her usual artistic fashion. In addition, there are pom pom creatures with adorable faces on the wreath. There is nothing that Debbie can't do, and her incredible love and support for Mattie are heartwarming. She wanted to create something that would bring a smile to Mattie's face, and to also bring Christmas to him. She especially wanted Mattie to know that his friends haven't forgotten him. To me that is so crucial especially now when Mattie is cutting himself off from a lot of the outside world. This wreath is already hanging in our home and serves as an artistic symbol of the love, support, and deep caring that exists in the world for Mattie. Thank you Debbie for always thinking of Mattie and being a wonderful example of the spirit of Christmas.

Today was in a way a miraculous day for me. Mattie spent the day with his grandparents and I went over to Christine's house. I went over with the idea that I was going to help her and Ellen wrap presents for the nurses and other special staff members. This is a huge task, especially if you could see the number of presents being distributed. I feel that so many people at Georgetown need to be acknowledged for the work they do. Sure they are just doing their job, but many of them go above and beyond their job descriptions and Christmas is the perfect time of year to say thank you and to let them know we think they are special. So I arrived at Christine's at around 1pm. When I got there, I could see that Christine and Ellen had done most of the wrapping and assembling already. Ellen then proceeded to tell me that there is no way they were going to let me spend my free time wrapping gifts. So instead, Ellen said she was taking Christine and I out to have a manicure and pedicure and then Christine was going to take all of us out to lunch. I much say I was a little stunned. I wasn't expecting this surprise. I did not see that coming, but what a delightful day. I haven't had a manicure and pedicure in ages, and I can tell you I never in my entire life went for a manicure and pedicure with friends. For a moment in time, I felt like I was living out a different life. Almost like a character in a movie surrounded by friends and having a bonding moment. I loved the social experience and I truly believe that Mattie's situation has made the three of us pause. It has made us also see the importance of stopping, taking care of ourselves, and allowing us to enjoy spending time together without worrying so much about our obligations. For me it is sad that it took Mattie's illness for me to have a priority check! Christine even said, why didn't we do this last year? I think through Mattie's illness, it has enabled me to have even more meaningful relationships and friendships than I had before. Mind you I am not recommending or wishing upon anyone to have a sick child to come to this revelation, I guess I am just saying, since I am in this situation, I am trying to grow and learn while adjusting to it.

We had a lovely lunch together as well, and I had my first experience eating fried olives. This may not sound appealing to you, but I am an olive fan, and frying them and putting them in tomato sauce was delicious. We went all out today, we had wine with lunch, splits salads, had entrees, and of course wonderful conversation. I can't thank Christine and Ellen enough. Their friendship is a true gift on so many levels, and I am not sure if they know how much today meant to me. This moment of happiness I will carry with me and hold dear as I head off to my own private Alcatraz on monday. But I have to say that a big thank you also goes out to James, Christine's husband. James watched all the kids today while we went out and had a great time, and mind you we were gone for a significant amount of time. So I can't forget to thank James for making this possible!

After I left Christine's house this evening, I headed off to Toys R Us. Definitely NOT my favorite place to be on a saturday before Christmas. The place was a zoo at 7pm. If the economy is tanking, you just couldn't tell by being in the store. People were all over the place loading up carts! But I was on a mission. Mattie wanted transforming Wall-E. I wasn't planning on coming home tonight without it. When I got into the store, the amount of chaos was overwhelming and I had no intention of roaming around the store. So I ran up to a representative and had him walk me to where Wall-E was. When we got to the shelf there was nothing on it. No Wall-Es! Major problem. I then called up Peter to have him break the news to Mattie and we were negotiating other items over the phone with Mattie. As we were talking on the phone, something caused me to turn around and head back to the empty shelf again. This time, on the shelf stood one transforming Wall-E. I don't know how it got there! But I snatched it up! I even bought Mattie the movie Wall-E, because he is in love with the character but hasn't seen the movie yet (side note: I grabbed a high definition version of this movie and tonight when I tried to show it to Mattie, I couldn't get it to work. You would think I would know that I can't show a high definition DVD on a TV that is not high definition. Oh well! He was SO upset with me. Clearly I won't be making that mistake again. So I started looking for the Toys R Us receipt so I could return it tomorrow, and I couldn't find it. Panic set in, until I found it. Mind you all of this is happening at midnight, when Mattie seems to have an inordinate amount of energy!).

When I got home, Mattie's grandparents told me about Mattie's day. Mattie started off the morning a bit grumpy, but then opened up a present that his buddy Paul sent him. It was a lego advent calendar. A major hit for a lego fan. This changed Mattie's mood and he started building with his grandparents when I left for the day. But when I left I could sense Mattie was edgy. The goal of today was for Peter and I both to have a break. But that did not happen for Peter unfortunately. Mattie also spent some time outside today playing with his remote control cars. He also had several visits from JJ (our resident Jack Russell Terrier). JJ brought Mattie a delicious lunch today, and apparently Mattie ate an entire plate of pasta and then pizza. Way to go Mattie. Way to go JJ! But Mattie really did not want to separate from Peter today. Peter did go for a haircut and then attempted to rest in my parent's apartment for a bit. That lasted about 20 minutes, and then he received a call from his mom that Mattie really needed him. I can only imagine how frustrated and upset Peter was. I have many days like this, and you feel if you don't get a break, you will just crack. When Peter told me this story, I felt a bit guilty for leaving today. But then Peter snapped me back into reality and told me how happy he was that I had a good day.

We want to thank the Frye family for providing us with a wonderful Chinese food dinner. We all enjoyed it and ate as a family. Mattie especially loved the adorable light up tree you and singing puppy gifts. In fact the tree has been set up and is incorporated into his Christmas display. I started talking with Mattie tonight about going back to the hospital. He definitely did not want to go back on sunday night as planned. He has agreed to go back on monday. There are many advantages to going in on sunday, because it streamlines the whole admissions nightmare, but then it cuts short our time at home. Frankly another night at home is the best therapy, and I will deal with whatever run around I have to on monday. So I sent an e-mail to Dr. Toretsky tonight and he immediately responded and said he understood my position. It is glorious not to be living in a fish bowl! I always took this aspect of my life for granted, but not anymore. I crave privacy, alone time, peace and quiet, and normalcy. There is NO NEW NORMAL! "The NEW NORMAL" from my perspective is a term created by someone who hasn't a clue about raising a child with cancer.

It is now 12:45am, and I am winding down, I just got Mattie to sleep, and I sent Peter up to bed at 10:30pm. I have Mattie duty tonight, and with that you don't know what the night holds. But Peter and I have certainly gotten the medication management down to a science. Which isn't easy since Mattie has anxiety, depression, and acid reflux medications, not to mention daily flushes of his central line, calcium supplements, oral care to prevent mouth sores, and now daily night IV hydrations. No problem! I am thinking of going back to school to become a nurse (I am KIDDING!). The funny part is the medical resident said to me before I left the hospital on thursday that she thought I would need an in home nurse to help me manage the medications and other stuff. I started laughing. Back in August if you told me I was going to be doing all of this stuff, I would have said no way. Now it is second nature to me and to Peter. So NO, an in home nurse isn't necessary for medication administration and management. When it comes to your child, you can learn just about anything, can't you?!

I end tonight with the big news around here. Mattie lost his third tooth! However, we can't find it. I frankly think he swallowed it. He was worried the tooth fairy wouldn't give him something if he couldn't show her the actual tooth. I said that wasn't necessary, but asked him what he thought the tooth fairy was going to bring him. He has requested another set of Christmas lights! Thank God we have another box on hand. Stay tuned for his reaction to the gift tomorrow.

Friday, December 19, 2008

Friday, December 19, 2008

Quote of the day: Thank you Anne S. and Karen for introducing me to Sean Swarner. Anne went to college with Sean, who sounds like a real inspiration for all of us, and certainly for the cancer community! To learn more about this remarkable man who is a two time cancer survivor, you can visit his website: http://www.seanswarner.com/.

"The human body can survive for about 30 days without food. The human condition can sustain itself for about three days without water, but no human alive can survive for more than thirty seconds without HOPE, because without hope we truly have nothing." ~ Sean Swarner (cancer surviver, completed the ironman 2008 championship, co-founder of the cancerclimber association)


It is hard to believe it is friday, actually it is hard to tell what day of the week it is in general. I guess that is not hard to imagine since each day is just like the next. Especially when you are a full time caregiver. Mattie woke up after 10am today. Dan, Mattie's in-home physical therapist, visited Mattie today at 10:30am. By the time Dan arrived, Mattie was dressed, out of bed, and walking around. Dan wanted to know if this was the same child he saw a few weeks ago. Dan observed Mattie walking, or shuffling along, and even saw Mattie climb up a few steps. However, Mattie started to shut down when Dan tried to show Mattie what exercises he should be doing. Dan even offered Mattie baseball cards as a reward for performing and complying with a task, but that did not interest Mattie. That really does not surprise me because Mattie has a strong willed personality and reward systems never worked for Mattie in the past. However, I told Mattie I wanted to hear what Dan said. Dan even wrote down a detailed regimen of exercises for Mattie. The only way Mattie would perform the exercises was if Dan left. So they made an agreement, Dan would leave, if Mattie did the exercises 15 minutes after Dan left. So I set a timer to make sure Mattie stuck to that deal.

At 11:30am, Mattie's paternal grandparents came over to spend the day with Mattie. Peter's parents are visiting from Boston and will be with us until monday. Mattie even performed his exercises with his grandparents. They did the exercises together! Dan would have been thrilled, because he was impacting three people today, not just Mattie. Mattie had fresh blood today, meaning two family members who were going to solely focus and play with him. He was loving it! Mattie had a good time opening up the Christmas presents that his grandparents brought him. From what I could see, Mattie built a wooden car model, built legos, did puzzles, read books, played on the piano (since Peter's mom is a music teacher by training), created an imaginary story about a dragon, and even built a gingerbread train. Mattie enjoyed today, and his grandparents commented on how lively and in good spirits Mattie is considering all that he is up against. For the most part, even during such challenging times, Mattie is a happy child. Peter's dad said to me that when he was talking with Mattie today, there were times he felt he was talking to a 15 year old. I think cancer ages not only the body but the mind.

While Mattie was playing with his grandparents, I went to visit Christine (my friend and SSSAS mom). Christine has ordered all the gifts I plan on giving out to all the Georgetown staff, and I wanted to pick up a few of the gifts today and deliver them to the hospital to lighten my delivery load for next week. Christine has done a great job coordinating all these gifts. I was determined to get to the hospital today because it was Lesley and Whitney's last day of their childlife internship. I am so happy I got to see them and thank them in person before they left. They are remarkable young ladies, and they will deeply be missed. I told them we have only known them for four months, but they have had a profound impact on our lives. Whitney's mom also gave me a gift. She gave me a beautiful silk scarf and a lovely card. That was a very thoughtful and generous gift, and it is amazing the wonderful people I have had the opportunity to get to know thanks to Mattie. We say good-bye to Lesley and Whitney and we know whatever hospital actually hires them, will be a lucky hospital.

After my gift delivery to the hospital, I headed back home, but instead of going home, I went to my parent's apartment. It was a great escape today. No noise and it was very peaceful. I even had the opportunity to go through the five large boxes that Christine and Ellen packed up for me of Mattie's toys that need to be donated. These boxes are right now being stored in my parents apartment, but their lease ends on December 31, so I want to make sure I deal with these boxes in a timely manner. Today was a rather freeing day.

We want to thank the Bentsen family for a wonderful pizza dinner tonight. We have never tried the Pizza co. but the pizza comes assembled on freshly made dough, and all you have to do is bake it. Mattie also loved the snowmen and reindeer hinged boxes. He especially loved the miniature pieces inside of the boxes, such as the tiny snowflake and Christmas tree. We also appreciate the owl (the mascot from your daughter's college). Congratulations to her for getting admitted to a great college. It was nice that we could all eat together as a family tonight, and it was wonderful to see Mattie eat pizza as well!

After dinner, Mattie wanted to open up another gift. So I went to our stake of gifts. I have a stack thanks to all of you who generously keep sending Mattie things. These gifts come in very handly and help me get him to do certain tasks in a day. Thank you! Tonight, Mattie opened up a gift from Goli and John (our neighbors who moved to NYC). Goli and John sent Mattie two wonderful pop pop books. One book was of structures and the other was of bugs. Mattie loved the bug book, and he couldn't wait to pop these bugs into my face. They are great books and we will enjoy looking at them often!

As we head into saturday, what weighs on my mind is that we are scheduled to go back to the hospital on sunday night. That certainly doesn't give us enough time at home. The nurses have encouraged me to have Mattie admitted the night before a chemo administration so he can get hydrated with fluids, and then begin chemo the next morning. While on chemo Mattie may get sick and also have to run to the bathroom every 90 minutes because of the intense hydration. Their thinking, which is correct, is Mattie doesn't really sleep at night with a chemo administration, so why not give it to him during the day while he is up anyway. In theory it would be nice if chemo was administered at night, and he would sleep through the side effects. But that never happens. So the nurses suggested I consider changing our admission time. I would really like to come in the night before, but I also want as much time at home as possible, because we will have another tough two weeks. I don't know if I can handle this 24/7 hospital life for the next two weeks without more of a break.

As I end the blog tonight, and mind you it is 12:10am, and Mattie is WIDE awake and watching the Bee movie (very cute movie), I want to thank all of you for reading the blog and staying connected. Sometimes I wonder what on earth keeps you all coming back, following the highs and lows with us, and not getting turned off to the unpleasant things I am reporting. I realize the answer is that you are all very special individuals who deeply care about a six year old boy. I guess what I want to say is that your unconditional support and steadfastness is deeply appreciated and we consider this the best Christmas gift you could ever give us.

Thursday, December 18, 2008

Thursday, December 18, 2008

Quote of the day (Thanks Charlie!):

When I saw this quote I thought this was so perfect. This is exactly what you and Pete are doing, praying with faith and continuing to push the envelope for Mattie's care.
Faith moves mountains, but you have to keep pushing while you are praying.

~ Mason Cooley

Our morning began at 6am, with incredible pounding and drilling. They are doing construction either on the floor above or below us in the hospital, and the sound was intense. You just want to scream sometime. The irony is when I went outside where the nurses' desk was, no one seemed visably bothered by the sound. God only knows how. It was the kind of sound that vibrates right through you, and mind you the sound never went away. It stayed with us into the afternoon. Don't think for one minute that a hospital is a place to rest if you are sick!

At around 10:45am, I started getting concerned about how our day was heading because I did not have a discharge time frame or plan laid out for us to leave. So I spoke with Miki, our nurse about this. Mattie was supposed to meet up with his psychiatrist at 2:30pm, and it turns out his oncologists scheduled Mattie for a hearing test at 2pm. So clearly Mattie couldn't be in two places at once. Peter and I know that the chemo drugs Mattie is exposed to could potentially affect his hearing, so I felt this test was imperative, and worked with Matt Biel (the psychiatrist) on coming up with a different meeting time for next week. I find that sometimes the coordination of Mattie's care needs a little subtle push, or perhaps prode, and today, I felt like I was on a mission. A mission to make sure that all of the other non-medical related services which are vital start falling into place for Mattie. I think PT and play therapy right now are crucial to Mattie's recovery.

Mattie played with Linda for a good chunk of the morning. Mattie seemed animated today, most likely because he knew he was leaving the hospital and was excited to go home. At around 1:45pm, we headed over to the audiologist for a hearing test. Lesley and Whitney came with us as well. We will truly miss them, since Mattie relates to these interns very well. They have just a warm and caring nature about them, and Mattie is pretty good at sizing up people. He trusts Lesley and Whitney, and that trust doesn't come easily. So myself, Lesley, and Whitney observed Mattie undergo about an hour's worth of testing. First they tested Mattie with a computer in a regular office, and then they took him into a sound proof chamber (which is incredibly quiet) and they placed ear phones on him and they wanted to hear if they could hear things through the ear phones. I could see the woman reading a script through the window, and to me it looked like she was doing more reading than I could see Mattie acknowledging. That was my first red flag. But honest to goodness, I never thought I was going to find anything unusual out of today's hearing results. However, I really need to prepare myself better for these things in the future. After the testing was over, the audiologists told Mattie he could go out of the room with Lesley and Whitney (thank goodness they were there!). I knew that wasn't a good sign, because if the results were good, they usually tell me in front of Mattie (or at least that is what happened last time). Today they told me that Mattie is losing hearing in both ears. The left ear is more pronounced than the right. He is having trouble hearing higher pitched tones in both ears. This is permanent damage, and they said if they could encourage the doctors to change his chemo (which of course isn't happening) they would, because it seems that more months on this stuff will only impact his hearing further. They even spoke to me about hearing aids eventually. Okay, that was JUST TOO MUCH to take today. My God! What else is in store for us and Mattie. At the moment, Mattie can pick up on conversational speech just fine, but they indicated that even this could be affected with more chemo. I walked out of that meeting and I felt like a train ran me over. I absolutely hate cancer! Cancer seems to attack every part of Mattie, hearing happens to be one of the measurable consequences of chemotherapy, but I know there are so many other aspects affected that are not quantifiable, at least by modern medicine. When I left the office I was with Mattie, and I did not want to appear frightened or so overwrought. But this is getting harder and harder to do these days. After Lesley and Whitney dropped me off to wait for Jane to pick us up to leave the hospital, I got a call from Matt Biel on my cell phone. I told him that I was unhappy with the results, and as I was talking about this I started to cry. A bystander in the waiting lounge apparently was watching me. Though I wasn't aware of it. After I got off the phone, she came over to me and wished Mattie a Merry Christmas. She basically said to Mattie, that it looked like he was going through a hard time, but is a fighter and she wanted to give him a Christmas gift. She asked me if that was okay. I was too dumb founded to really respond. Before I knew it she gave Mattie a $20 bill. She then gave me a hug and I continued to cry. She said nothing, but said Matthew would be in her prayers. I have no idea who this woman was or if I will ever see her again. She was like an angel today, who stopped me in my tracks with such a good and sensitive deed. God works in strange and mysterious ways.

Jane met us at 3:15pm, and helped us get home. She even brought us lunch which we had in the car. Thankfully so, because Mattie was straving. He literally ate four chicken nuggets and half a cheeseburger. Which is unheard of because he doesn't like hamburgers. I can't thank Jane enough for picking us up and helping us transition home!

When Mattie got home, he wanted to decorate the Christmas tree that Linda gave us. So I helped him with that and he wanted to go through some of the toys he got from the childlife room that he some how came home with today. I spent the next three hours unpacking things. I came home with six shopping bags full of toys and presents for Mattie. So I tried my best to organize things and clean up stuff from being away for 8 days. Fortunately Peter took all our things home this morning and even brought them inside for me, so I did not have to worry about schelping bags. Mattie did a good job at entertaining himself for three hours while I was running around.

Mattie even helped me open up Christmas cards and a gift I received. I want to thank the Peterson family for sending me such lovely Sephora lotions. I really appreciate your thinking of me always. That was very kind of you and with the dry air in the hospital, lotions are always appreciated. Thank you Brian Boru (our feline friend) for the beautiful golden snowflake ornament! Mattie loves how it sparkles. I would also like to acknowlege the GW counseling department faculty who have made a very generous donation to Mattie's fund. That was so thoughtful and I appreciate your support, kindness, and willingness to follow our journey.

Today was the day of special cards as well. We want to thank Nelson and Barbsie for making a special donation in Mattie's name to St. Jude Children's Research Hospital. I can't think of a more worthy facility to contribute to. We also want to thank Jo Pinder for enrolling Mattie in the masses and prayers of the Franciscan Friars beginning on Christmas day, and Marie Abbazio for enrolling Mattie in a perpetual mass of the Franciscan Friars in which Mattie has been inscribed in the spiritual treasury of the companions of St. Anthony. Last but not least, thank you Susan D. (Mattie's school counselor) for the fantastic santa/reindeer musical card! That brought a smile to our faces, as your cards always do.

We want to thank the Kelliher family for a lovely dinner and for the beautiful white poinsettia plant. It is a lovely reminder of Christmas. Mattie is also looking forward to watching Kung Fu panda! Thank you for supporting us tonight!

I had to join a board conference call tonight and some how I had to put Mattie's issues aside and try to focus. I am not sure how Peter does this every day, because it certainly isn't easy. Really everything else I hear about doesn't amount to a hill of beans in my book when I reflect on the crisis I face with Mattie. This seems to take front and center in my mind, body, and spirit. When I got off the call, Peter told me that Mattie somehow got from his wheelchair to another chair in our home while Peter was in the kitchen. I came down to observe this myself. Then the next thing I know, Mattie is standing up and hobbling around, holding each piece of furniture (like a toddler would do who is learning to walk). He was motivated to move around our first floor because his goal was to get upstairs where he knows I am keeping some of his Christmas presents. Nothing escapes him since he is home with me 24/7. Well Peter and I couldn't get over what we were seeing, quite a difference from yesterday when he told us he wanted to remain in his wheelchair. So as he moved from furniture piece to furniture piece, he eventually took a break by the piano. He pulled out the piano bench, sat down, and started playing "Mary Had a Little Lamb." Caroline (his piano teacher), you would be proud! Mind you he hasn't practiced at all, it just came to him. After playing, he got up again and made it to the stair case. I tried to take pictures to capture his determination. After all that great walking, I did break down and I gave Mattie a Christmas present. While I am typing this, I can hear Interactive Wall-E going off in the background and Mattie is enjoying his present.

What explains Mattie's willingness to walk tonight? It could be explained by so many things? One, his motivation to see his Christmas gifts, two, his happiness and security of being home, or three, he has determined he is ready now. It could be a combination of all three, but Mattie has a strong willed personality and he isn't going to do anything he assesses he isn't ready for or doesn't want to do. I just can't get over how much he walked tonight!

I end tonight's blog with a passage written by Aeschylus (a Greek Dramatist @550BC). Thanks Goli and John for sending this to me. Goli and John were our neighbors who now live in NYC.

He who learns must suffer

and even in our sleep

pain that can not forget

falls drop by drop

upon the heart

and in our own despair

against our will

comes wisdom to us

by the awful grace of God.

Wednesday, December 17, 2008

Wednesday, December 17, 2008

Quote of the day (Thanks Charlie!):
"Do not anticipate trouble or worry about what may never happen. Keep in the sunlight."~ Benjamin Franklin
Charlie wrote, "Easy to say (or write) but not easy to do. If prayers can make an outcome improve, Mattie has many well wishers working for him. We pray you will get a break before the next round of chemo and that the scan will be good news!"

Last night we were assigned a non-HEM/ONC nurse. Now you are probably saying to yourself so what, what on earth is the difference? Well let me tell you! The difference is huge. So huge, that you can basically tell right away whether a nurse is HEM/ONC or not. The HEM/ONC nurses tend to be patient, they listen, they are warm, compassionate, and understanding. They know what cancer families are up against, and therefore try to make the process as humane as possible. When our nurse walked in last night, Peter and I did not recognize her. We knew that wasn't a good sign, but we also know that there are some new traveling HEM/ONC nurses on the floor, so we made the assumption she was one of them. But as she was interacting with us and particularly with Mattie, we quickly realized she wasn't familiar with working with cancer patients at all. Poor Mattie. She grabbed his arms and legs to take his blood pressure and pulse, and I thought Mattie was going to jump out of the bed in pain. She did not seem taken a back either by the fact that he wasn't happy with her, or that she potentially hurt him. This morning, I went to talk to Jeff Turner, our nurse manager on the floor. Jeff has been fabulous. He really looks out for his HEM/ONC families and said that he agreed, Mattie needs consistency, and that such an oversight (of receiving a non HEM/ONC nurse) wouldn't happen again. In fact, he feels that Mattie shouldn't even be assigned a traveling nurse. I personally agree, since Mattie really needs to feel safe, and actually right now, his personality is so difficult that I notice most of the doctors and nurses don't want to deal with him. Clearly not the same kid that walked into this hospital in August. The nurses who have known Mattie since August see the change, understand the change, and it is nice that they remember the sweet boy that hides somewhere inside of Mattie.

Today was what I would call a difficult day. Mattie was feeling fine, that wasn't the issue. But the heightened anxiety Mattie is experiencing is overwhelming at time. He refused to give me time outside the room. He wanted to play non stop the entire day, and needs my undivided attention. I think any parent can do this for a day or two, but try months. Mattie and I played with Lesley today using biopaints. Basically you mix the paint with water, and it turns into this gloppy/gak like substance. Mattie loves this kind of tactile stuff, and got his hands and part of his arms in this stuff. It was a royal mess, and he even covered me in it. I do not share in Mattie's love for this kind of stuff, so I couldn't wait to get it off of me. The things we do for our children. I snapped a picture of Mattie, Lesley, and Whitney. I wanted to capture this moment of them with him. We will miss them next week!

Mattie had to take some more x-rays today. This time Theresa, the x-ray tech that Mattie knows, was back. Theresa worked with Mattie to find a way to comfortably take the x-rays of his wrist and arm. Linda accompanied us and as usual had her bag of tricks to distract and engage Mattie. She even put Christmas lights on his wheelchair and brought her plantetarium machine down to the x-ray room. Mattie did a very good job taking the x-rays and we were very proud of him. When we got back to his room, Mattie met up with Lenny. Lenny is a volunteer who plays the guitar and sings. He sang several songs for Mattie and Mattie was listening and playing with me at the same time. Pretty soon there after, Deborah, the bead lady, came and she, Linda, and Anna helped Mattie to design a Christmas bracelet. It is lovely. While Mattie was working on the bracelet, Anna was trying to talk with Mattie about PT.

Mattie's reaction to PT really saddens me. Mattie told Anna again today that he did not need her
but what caught me off guard was that he told her he doesn't want to walk, and wants to stay in his wheelchair. We told him that his wheelchair was meant to be a temporary thing, not permanent. I then told him that the sooner he starts to walk the more he will be able to do with his friends. That only made things worse. He said he did not care and did not want to play with his friends. Now I realize he on the deepest level doesn't mean this, but I have to tell you, this comment bothered me. It further emphasizes the isolation I feel each day. An isolation that is only growing. We are all human, and one of the things we need to be healthy is social connections. The fact that Mattie is closing himself off clues me into a problem that unless worked out will only get more complicated. So my level of stress was just building up throughout the day. When you don't get a break and you play non stop you there is no time to gain perspective and to recharge. Also Mattie's play isn't always fun. Because to play effectively with him, you have to really meet him where he is, this takes a lot of energy on all levels.

Later on today, Mattie had a visit from Mary Dressendorfer. Mary is Mattie's SSSAS technology teacher. Mary is an absolutely beautiful person inside and out. Her mother dealt with multiple forms of cancer, and she gets the disease and all its impacts. She came to visit Mattie and brought him several things to open. She brought Mattie a big, long cardboard box with little boxes inside of it. We helped Mattie transform the box into a building with a pully elevator. But Mattie was getting frustrated throughout the entire play. Mary even brought Mattie walkie talkies to try out. I think the idea was great, she gave me one and the other to Mattie. I attempted to get out of the room with one, and I figured if he needed to touch base with me he could, but this did not suffice for him, he really wanted me back in the room with him. Mary also made Mattie some wonderful holiday ornaments and decorations to hang up in his room. We will definitely do this next week! We really appreciate Mary bringing us some bubbles from her wedding. We feel special to be included in this memorable occasion. Mattie also received a very special gift from Bob Weiman (SSSAS lower head of school). Bob found a collector's item on e-bay. The bionic man doll. It is simply fabulous. I remember watching the bionic man growing up and was fascinated by Lee Majors and his capabilities. Who knew I was going to be raising the bionic boy when I grew up. What a fabulous gift, and Mattie totally related to this action figure. He was checking out his bionic parts, and really this is the action figure version of Mattie. It was great seeing Mattie put this together. What an absolutely clever gift! Thank you also for the cute scooby doo keychain and musical card!

We want to thank the Cooper family for a wonderful lunch. Mattie ate ALL his chicken nuggets and most of his french fries today. Mattie is looking forward to cracking open the dino egg as well. We also want to thank the Gehrs family for an amazingly generous dinner. I am sitting here eating a chocolate cheesecake while typing this. This is my form of therapy (writing and chocolate!).


At 5:30pm, I thought I was going to lose my mind. I couldn't take another demand, another minute of play, anymore whinning, etc. So I told Mattie he needed to be quiet for 10 minutes, he had to entertain himself, and I spent that time regrouping myself and cleaning up the room, which looked like a bomb blew off in it. Within that time, Mattie reset himself. He decided to watch a Scooby Doo video after 10 minutes, and is now sitting and playing with playdoh and his cars that Brandon gave him. Thank goodness, because I am worn out on so many levels.

As I finish tonight's blog, I have a night full of packing ahead of me. Mattie's blood count was 300 today. They plan on discharging Mattie from the hospital tomorrow, after I take him for a hearing test. But now that my parents aren't here, I need major help and coordination with discharge. So tonight I plan on packing up Mattie's room, and having Peter take all the boxes and things down to his car. So that I don't have to deal with this tomorrow. Then tomorrow, I will just have to worry about Mattie and maybe one valise. I want to thank my friend Jane for her willingness to come to the hospital tomorrow, and for transporting Mattie and I home since I won't have a car here at the hospital. I am not sure where I would be if Mattie never attended RCC or SSSAS. Fortunately I don't need to find out. But I must say after a long day, the last thing I want to deal with is packing. Going home isn't easy either, and now not only will I have to administer him this white blood cell growth factor through his central line, but Mattie will need IV fluids every night while home. The fluids will contain the electrolytes he needs which have been depleted in his system from the new chemo. I am not sure how I have the strength to wake up each day to face another day like I had the day before. I am trapped and at times there seems no way out of this.

I received another wonderful Christmas story e-mail today, which I would like to use to end tonight's posting. Thanks Charlie for sending this to me today! It is kind of funny how we spend all this money and time shopping for gifts during Christmas, when in all reality this is not what Christmas is about. It is a holiday that has been commercialized, and the meaning of the holiday no one talks about any more. I too have been guilty of this over the years, but I think Mattie's illness has allowed me to see that all these tangible gifts don't matter, they don't make Christmas or produce lasting happiness. What makes Christmas is far more meaningful, something that can't be bought or put under a tree. It is meaningful social and emotional connections with others, it is the love and respect of a child, and the appreciation of one's good fortune for health, happiness, and life. Okay, enough pontificating, but I have been shaken up this year, and it is my hope you all can gain something from what my family is going through, because I certainly wouldn't wish the circumstances of how I obtained this wisdom on any of you.

Night Before Christmas for Mommies
'Twas The Night Before Christmas...Mom Style 'Twas the night before Christmas, when all through the abode Only one creature was stirring & she was cleaning the commode. The children were finally sleeping, all snug in their beds, while visions of X-Box & Barbie flipped through their heads. Yes, and dad was snoring in front of the TV, with a half constructed bicycle propped on his knee. So only the mom heard the reindeer hooves clatter, which made her sigh, "Now what is the matter?" With toilet bowl brush still clutched in her hand, She descended the stairs, and saw the old man. He was covered with ashes & soot, which fell with a shrug, "Oh great," muttered the mom, "Now I have to clean the rug." "Ho Ho Ho!" cried Santa, I'm glad you're awake." "your gift was especially difficult to make." "Thanks, Santa, but all I want is time alone." "Exactly!" he chuckled, "So, I've made you a clone." "A clone?" she muttered, "What good is that?" "Run along, Santa, I've no time for chit chat." Then out walked the clone - The mother's twin, Same hair, same eyes, same double chin. "She'll cook, she'll dust, she'll mop every mess. You'll relax, take it easy, watch TV and rest. "Fantastic!" the mom cheered. "My dream has come true!" "I'll shop, I'll read, I'll sleep a night through!" From the room a bove, the youngest did fret. "Mommy?! Come quickly, I'm scared and I'm wet." The clone replied, "I'm coming, sweetheart." "Hey," the mom smiled, "She sure knows her part." The clone changed the child and hummed her a tune, as she bundled the small one in a blanket cocoon. "You're the best mommy ever. I really love you." The clone smiled and sighed, "And I love you too." The mom frowned and said, "Sorry, Santa, no deal. That's my child's LOVE she is going to steal." Smiling wisely, Santa said: "To me it is clear, Only one loving mother is needed here." The mom kissed her child and tucked her in bed. "Thank You, Santa, for clearing my head. Sometimes I forget, it won't be very long, before they'll be too old for my cradle and song." The clock on the mantle began to chime. Santa whispered to the clone, "It works every time." With the clone by his side, Santa said: "Goodnight. Merry Christmas, dear Mom, you'll be all right." Sometimes we need reminding of what life is all about. Especially at times when the Holiday season shouts, and all we do is clean, bake, and procure. You get the picture -- I'm sure. So stop for a moment and hug that little one so dear, whether he/she is 2 or 22, or even older this year. For they are the gift that God gave us from Heaven above, and what a special gift to be treasured, with endless LOVE! May The Real Meaning Of Christmas Be With You All Year There are no miracles for those... that have no faith in them... Have faith in the Miracle of Christmas !!! The Lord is my strength and my song.

Tuesday, December 16, 2008

Tuesday, December 16, 2008

Quotes of the day:

Thank you Susan S.: "It's not so much that we're afraid of change or so in love with the old ways, but it's that place in between that we fear . . . . It's like being between trapezes. It's Linus when his blanket is in the dryer. There's nothing to hold on to." ~ Marilyn Ferguson.

Thank you Toni (Brandon's Mom): "Hope is faith holding out its hand in the dark." ~ George Iles

Monday night was a fairly peaceful night. Mattie was up only once. He went to bed around 12:30am, and to make a long story short, he did not wake up until 12:45pm (TODAY!). In fact, I had to wake him up because he was so tired. I felt the need to wake him up because I did not want him to sleep the day away, because I always worry that he then won't sleep at night.

I get up each weekday morning when Peter does, which is around 6am or so. I know that if I don't get up then, I won't be able to take a shower and put on clean clothes in peace, which to me is very important! The hospital seems to come to life at 8am, and if I am not up and dressed by that point, you can kiss it good-bye. As it is, the sink is right in our room, not in the bathroom, so I have become desensitized to brushing my teeth, hair, and putting on make up in front of most visitors coming in. I could tell that Mattie was going to continue sleeping this morning, so I too decided to lie back down and rest. However, unlike with Mattie, resting for me in the morning is impossible, because our room door is like grand central station.

Later in the morning, Ann and Marilyn (one of Mattie's preschool teachers from RCC) came to visit with us. Ann brought me a lovely lunch and several treats. I am happy to report, that Mattie literally ate 1/4 of the pumpkin loaf that Ann brought today, an entire dunkin donut, and a pumpkin pastry. He literally gobbled these things up! It was glorious to see. While Mattie was sleeping this morning, Ann stayed with him so I could get out of the room. I went out in the hallway and chatted with Marilyn. Marilyn is a delightful, warm, and sensitive individual. She listened to what was going on with us, and one thing that Marilyn quickly saw is that when I am out in the hallway it is no break for me. She said that literally I made four important decisions about Mattie's care or treatment while in the hallway. This is the case because I land up talking to doctors and nurses in the hallway as well as fellow parents. I certainly love talking with all these individuals, but there is NO place on the fifth floor where you can just escape and be. At the moment, Mattie needs me fairly close, so I don't like straying from the floor. I did not think much about my hallway life, other than I was cognizant of it, but when Marilyn made mention of it, I felt so good to hear Marilyn's perspective, because these days I can't tell if I am just being overly sensitive or whether it is a reality. But I had a feeling I was right on target!

At 12:45pm, Marilyn and I went back to Mattie's room and I woke him up. At which point he wanted no talking and wanted everyone out of the room. So Ann and Marilyn put our lunch foods in the refrigerator and they went to get me some hot tea. Ann left Mattie with potty putty. Right up the alley of a 6 year old boy. The putty container is a small toilet, and the putty makes all sorts of noise. When Ann left, Mattie couldn't resist but playing with the thing! When Ann and Marilyn got back to Mattie's room it was a little different from when they left it. Mattie was out of bed, in his wheelchair and working on a tough puzzle. In addition, Linda, Anna, and Matt Biel (Mattie's psychiatrist) came to visit and where surrounding him. When Ann and Marilyn came back, they couldn't get over how many of us where in the room! It saddens me that Mattie can't connect with people like he used to. He refuses to talk and wants to be around no one. Marilyn and Ann dealt with this well, and they came in today with no expectations, which is a great way to come. It was certainly nice to see both of them, and I just wish they could have stayed longer, it would have broken up the day longer. But Mattie just can't handle it now, and has no problem telling people to just leave. It is hard not to take his demands personally.

As the afternoon moved along, Mattie had to go down for x-rays. Bob wanted all of Mattie's operated parts to be x-rayed to make sure the prostheses were in place and the wrist graft was taking. We actually tried doing x-rays yesterday, but we did not get too far. We did just the wrist. Mattie had a new x-ray technician yesterday, who he wasn't used to, nor was she used to Mattie, so the dynamics weren't right to actually complete the scans. Today, Linda brought Jey into the picture. Jey is a CT technician and Mattie's "big brother." Jey agreed to come with Mattie to the x-rays today. So Linda, Mattie, Jey, and I went on an x-ray adventure. Linda even wrapped Christmas lights around Mattie's IV pole to make the trip extra special. Mattie dealt with the x-rays better today, though by the end he was crying and wanted to get back to his room.

I have been reflecting on Mattie's ability to do therapy (PT and play) while in the hospital this week. I spoke with Dr. Synder about this today and she said if I wanted Mattie to have therapies this week, that I just needed to call Anna and Matt Biel. So indeed I did. I had the medical resident page them. Anna came up right away as did Matt. Matt usually provides therapy on an outpatient basis, but I told him my concern about this is Mattie is rarely outpatient. So he has agreed to try to schedule to meet Mattie three times a week while he is inpatient. Trying to schedule anything while inpatient is tricky because things here are always in flux. Mattie could potentially not be feeling well, he could be called for a scan, a doctor's visit, etc. When Anna came however, I was disturbed by Mattie's attitude. Not that he was afraid, though this could be the heart of the problem, I don't know. But he basically told Anna that he doesn't need her, and he knows better than her. He says he can walk already, so doesn't need instruction from Anna. Anna and I played it cool, and we pretended that Anna was instructing me rather than Mattie. I am determined to get him up and walking and more independent. Of course as I think about this, if he is experiencing anxiety and trauma, maybe he isn't ready for such a big step toward independence. I don't know, but somehow I view the emotional issues to be very connected to Mattie's unwillingness to work with Anna.

Ironically Mattie mentioned to Alison and I yesterday that he doesn't like adults. Sure why would he? We are constantly exposing him to painful things and medicines. Mattie's blood count today is 80. Up from zero. But it needs to be around 500 to be discharged from the hospital. So we have a way to go. We want to thank Marilyn today for the beautiful poinsettia plant (though plants are not allowed in the PICU, we plan on taking the plant to Peter's office), the treats, and the Search and Find holiday book for Mattie. That was so thoughtful of you! We also want to thank Toni, Jim, and Brandon for the Christmas gifts. Mattie loves the hotwheels. Mattie appreciates his big buddy thinking of him. We continue to miss Toni and Brandon, so it was such a nice surprise to see them here today. I think Brandon also misses being here, because for several months this was his community and support network. It is hard to leave that behind.

We want to thank the Keefe family tonight for the wonderful dinner. It meant a lot that you forged through the rain and the terrible traffic to get here. We are blessed to have an incredible network of supporters, and there isn't a day that goes by where we don't acknowledge how lucky we are to have Team Mattie in our lives. Marliyn and I were talking to another family in the hall today who was telling us about their financial hardship. Both of these parents lost their jobs, have no insurance to speak of, and therefore no income coming in. Yet they have a very sick child. When I hear stories like this, I feel fortunate, and I try to look at the positive (which is HARD to do these days) regarding my own situation.

I received two lovely e-mails today which I would like to share with you. Mary M. (a former student of mine) wrote, "I'm sorry to hear your parents are leaving. I'm sure that must be very hard for you. I thought they lived nearby, I didn't realize they lived in California. When you wrote about your parents, it was very apparent how much they love you and want to help. I thought to myself, "They love Vicki like Vicki loves Mattie. That's why they were there for you...just like you have been for Mattie and like you would also be for Mattie, if he were an adult going through what you are going through now. That's what's amazing, the love of parents for their children, it's never-ending and endures all. You've proven that. I was wondering, would you rather stay in the hospital until Monday if you had a choice or would you like to go home with Mattie for a break from the hospital? It's so hard to take him home, just to turn around and go back, yet I bet it's nice to get away from there too. What a choice! Your options have been very difficult on so many levels lately. Your description of the way the hospital functions is really disturbing. You'd think that things would have changed over the years, but it appears that certain things in hospitals never change. I don't get it. I'm sure I speak for many when I say, although it's hard to see your parents leave, you are not alone. We're all out here... praying for Mattie, you and Peter and wishing for things to turn around in the positive direction."

I would like to end tonight's blog with an e-mail I received from Mary D. Mary is a RCC mom and she and her family have become wonderful Mattie supporters. Mary wrote, "I wanted to thank you so much for allowing me the opportunity to see Mattie in the hospital. When I entered his room, he was singing a Christmas carol with your Mom. It was so magical, his voice so incredibly sweet. He flashed a smile at me, and it was wonderful. It was a moment I will forever treasure and feel so blessed. He’s such a special young boy. You are amazing parents! We are all lucky that the Brown family has crossed our paths. A friend of mine forwarded me the following entitled, “The True Meaning of Christmas.” I had to share this with you. I do believe in miracles, and we are all praying for one for Mattie!"

THE TRUE MEANING OF CHRISTMAS
Three years ago, a little boy and his grandmother came to see Santa At the Mayfair Mall in Wisconsin . The child climbed up on his lap, holding a picture of a little girl. "Who is this?" asked Santa, smiling. "Your friend? Your sister?'" "Yes, Santa,' he replied. "My sister, Sarah, who is very sick," he said sadly. Santa glanced over at the grandmother who was waiting nearby, andSaw her dabbing her eyes with a tissue. "She wanted to come with me to see you, oh, so very much, Santa!" the child exclaimed."She misses you," he added softly.Santa tried to be cheerful and encouraged a smile to the boy's face, asking him what he wanted Santa to bring him for Christmas. When they finished their visit, the Grandmother came over to help the child off his lap, and started to say something to Santa, but Halted.

"What is it?" Santa asked warmly.

"Well, I know it's really too much to ask you, Santa, but ..." the old woman began, shooing her grandson over to one of Santa's elves to collect the little gift which Santa gave all his young visitors."The girl in the photograph... My granddaughter well, you see ....She has leukemia and isn't expected to make it even through theHolidays," she said through tear-filled eyes. "Is there any way, Santa. Any possible way that you could come see Sarah? That's all she's asked for, for Christmas, is to see Santa."

Santa blinked and swallowed hard and told the woman to leave information with his elves as to where Sarah was, and he would see what he could do. Santa thought of little else the rest of that afternoon. He knew what he had to do. "What if it were MY child lying in that hospital bed, dying," he thought with a sinking heart, "This is the least I can do."

When Santa finished visiting with all the boys and girls that evening, he retrieved from his helper the name of the hospital where Sarah was staying. He asked the assistant location manager how to get to Children's Hospital.

"Why?" Rick asked, with a puzzled look on his face.

Santa relayed to him the conversation with Sarah's grandmother earlier that day. "C'mon.....I'll take you there." Rick said softly. Rick drove them to the hospital and came inside with Santa.They found out which room Sarah was in. A pale Rick said he would wait out in the hall. Santa quietly peeked into the room through the half-closed door and saw little Sarah on the bed.

The room was full of what appeared to be her family; there was the Grandmother and the girl's brother he had met earlier that day. A woman whom he guessed was Sarah's mother stood by the bed, gently pushing Sarah's thin hair off her forehead.

And another woman who he discovered later was Sarah's aunt, sat in a chair near the bed with a weary, sad look on her face. They were talking quietly, and Santa could sense the warmth and closeness of the family, and their love and concern for Sarah.

Taking a deep breath, and forcing a smile on his face, Santa entered the room, bellowing a hearty, "Ho, ho, ho!" "Santa!" shrieked little Sarah weakly, as she tried to escape her bed to run to him, IV Tubes intact. Santa rushed to her side and gave her a warm hug. A child the tender age of his own son -- 9 years old -- gazed up at him with wonder and excitement.

Her skin was pale and her short tresses bore telltale bald patches from the effects of chemotherapy. But all he saw when he looked at her was a pair of huge, blue eyes. His heart melted, and he had to force himself to choke back tears.

Though his eyes were riveted upon Sarah's face, he could hear the Gasps and quiet sobbing of the women in the room.

As he and Sarah began talking, the family crept quietly to thebedside one by one, squeezing Santa's shoulder or his hand gratefully, whispering "Thank you" as they gazed sincerely at him with shining eyes. Santa and Sarah talked and talked, and she told him excitedly all the toys she wanted for Christmas, assuring him she'd been a very good girl that year.

As their time together dwindled, Santa felt led in his spirit to pray for Sarah, and asked for permission from the girl's mother. She nodded in agreement and the entire family circled around Sarah's bed, holding hands. Santa looked intensely at Sarah and asked her if she believed inangels. "Oh, yes, Santa... I do!" she exclaimed.

"Well, I'm going to ask that angels watch over you." he said. Laying one hand on the child's head, Santa closed his eyes and prayed. He asked that God touch little Sarah, and heal her body from this disease.He asked that angels minister to her, watch and keep her. And when he finished praying, still with eyes closed, he started singing, softly,"Silent Night, Holy Night.... all is calm, all is bright...""The family joined in, still holding hands, smiling at Sarah, and crying tears of hope, tears of joy for this moment, as Sarah beamed at them all.

When the song ended, Santa sat on the side of the bed again and held Sarah's frail, small hands in his own. "Now, Sarah," he said authoritatively, "you have a job to do, and that is to concentrate on getting well. I want you to have fun playing with your friends this summer, and I expect to see you at my house at Mayfair Mall this time next year!"

He knew it was risky proclaiming that to this little girl who had terminal cancer, but he "had" to. He had to give her the greatestgift he could -- not dolls or games or toys -- but the gift of HOPE."Yes, Santa!" Sarah exclaimed, her eyes bright. He leaned down and kissed her on the forehead and left the room.

Out in the hall, the minute Santa's eyes met Rick's, a look passed between them and they wept unashamed.

Sarah's mother and grandmother slipped out of the room quickly and rushed to Santa's side to thank him.

"My only child is the same age as Sarah," he explained quietly."This is the least I could do." They nodded with understanding and hugged him.

One year later, Santa Mark was again back on the set in Milwaukee for his six-week, seasonal job which he so loves to do. Several weeks went by and then one day a child came up to sit on his lap."Hi, Santa! Remember me?!" "Of course, I do," Santa proclaimed (as he always does), smiling down at her. After all, the secret to being a "good" Santa is to always make each child feel as if they are the "only" child in the world at that moment.

"You came to see me in the hospital last year!" Santa's jaw dropped.Tears immediately sprang in his eyes, and he grabbed this littlemiracle and held her to his chest. "Sarah!" he exclaimed. He scarcelyrecognized her, for her hair was long and silky and her cheeks wererosy -- much different from the little girl he had visited just a year before. He looked over and saw Sarah's mother and grandmother in the sidelines smiling and waving and wiping their eyes.

That was the best Christmas ever for Santa Claus.

He had witnessed --and been blessed to be instrumental in bringing about -- this miracle of hope. This precious little child was healed. Cancer-free. Alive and well. He silently looked up to Heaven and humbly whispered, "Thank you, Father. 'Tis a very, Merry Christmas!"

Monday, December 15, 2008

Monday, December 15, 2008

Quote of the day from Peter! "The difference between the impossible and the possible lies in a person's determination." ~ Tommy Lasorda

Well I can't think of any two people more determined than Peter and I right now. If determination really could accomplish the impossible (a cure for osteosarcoma) we would be the poster family for the disease. Or so I feel.

Mattie went to bed at 1am and slept fairly well through the night. He was up several times to go to the bathroom (Which is a figurative statement, since Mattie still has trouble moving, and uses a urinal in bed. I just felt the need to clarify that because going to the bathroom sounds like such an independent thing!) and then had his 4am blood draws. Now you have to ask yourself, what nut selects this time to draw blood. Do you think a child can sleep through a blood draw? Do you think a family doesn't hear a nurse come in and try to do this (even though the nurses are fabulous and tip toe around)? I know why blood draws are done at 4am, it is simple. It is convenient for the doctors. They want the results ready at hand when they round at 8am. God forbid decisions are made that would be beneficial for the mental health of the patient and his/her family. Mental health within a PICU is SO LOW on the priority list, it is disgusting. Even if you weren't sick when you entered this facility, the sheer fact that sleep can't happen on a hospital schedule, sets you on a sure path of becoming sick.

Mattie slept in this morning. He did not get up until 11am. It was totally unheard of. But I think between the anxiety medication and the stomach medication, it is helping to calm him down a bit. Mattie woke up with the idea of opening up presents. There were several in the room for him to open. We want to thank the Doane's for the wonderful air craft sets. We are going to love setting those off. They are made out of foam, so we can easily do them in Mattie's hospital room. Mattie also received a beautiful pop up book from his cousins (Nat, Sydney, and Will) entitled, "Christmas around the world." It was so special and put Mattie in the holiday spirit. It was lovely to see in 3-D how others around the world celebrate and decorate for Christmas. Mattie also received a gift from his great aunt Gloria. Mattie loves his living aquarium animated ocean lamp. It has been going in our room all day, and it is mesmorizing. We also want to thank Gloria for the special mass being said on Mattie's behalf at our Lady of Lourdes in France.

As the morning moved along Mattie chose to watch "Snow Buddies," which is a cute movie! We watched it and during the movie we had a visit from Alison who brought me a wonderful lunch as well as a happy meal and a shake for Mattie. Mattie did drink a small portion of the shake and a whole apple pie. But that has been it for the day for him. He refuses much else, even though I offer him a ton of different choices of food. Frankly I don't care what he eats as long as he eats. Mattie was very upset that Alison and I were talking. He stopped us several times, and Alison decided to leave so that Mattie could watch his movie with me alone. Which is what his ultimate goal was. It saddens me that I am unable to have a conversation during the day, that for most days I can't leave the room for long, and that Mattie has become so dependent and anxious. It isn't easy to see your child transform before your eyes. Thank you Alison for the hysterical chocolate bar which reads, "Christmas can be a difficult time....." It is sad but true, for so many the holidays are not necessarily happy times, but painful ones. I can relate to the pain this year. I am not the grinch who stole Christmas or Ebenezer Scrooge, but frankly this holiday could come and go this year, and I wouldn't know the difference. Christmas is a magical time normally, a time of reflection, and a time to celebrate Christ's birth. However, the only energy I can expend this holiday season is on keeping it together and watching out for Mattie. That may sound strange or depressing, but unfortunately it is the reality.

Peter and I have been talking about Mattie's treatment plan and next steps. We have reached out to Nita Siebel and others again for their perspective. We feel it is crucial to understand what our options are before Mattie's next scan. Because we are dealing with such unique issues, we both feel the more heads and experts working together the better. So in the midst of balancing the day to day stresses we are also thinking of the long term issues we will have to face.

Later this afternoon, Linda came and sat with Mattie for a while to work on his Christmas house. The house is coming along quite nicely. While Linda was with Mattie, I went to sit in the hallway for a while. I was gone about 20 minutes, and then I heard screaming and crying. At first I thought it was a baby in the PICU, but the more I focused on the crying I realized it was Mattie. It is a real issue, because I feel as if I can't leave for too long or go that far away because Mattie can work himself up so. After I calmed him down, he had a visit from Jenny and Jessie. Jenny helped us create a good-bye card for Mattie to give to Grammie and Pop Pop. I helped Mattie complete the card and put stickers on it. Jessie and I then worked with Mattie on creating gross things (e.g., a rat, a roach, a snake, etc). Mattie proceeded to attack me with all these creepy crawling things. He thought that was a riot!

My parents came by to say good-bye to Mattie and brought with them some challenging puzzles for him to do. He sat with them for a while and did a puzzle while I sat in the hallway. While in the hallway, I had a nice conversation with Lesley and Whitney and I told them we were going to miss them when they leave on friday (their last day of internship). They are such warm, bright, and caring individuals, and it will be a shame to see them go. This week is the week of good-byes and changes. Things I particularly did not care for before Mattie's illness, but now I can assure you, I can't stand such changes. You need safety and security around you in such times of crisis. I now get Maslow's (a humanistic psychologist) hierarchy of needs more so than ever before!

We said good-bye to my parents tonight and I have to say it hit me hard. It just seems to magnify the isolation some how. We want to thank the Murphy family for a lovely dinner. Thank you for hand delivering it and for all your support! After dinner, I decided to do laundry. One of my favorite things to do now, because it gets me out of the hospital room. While in the parent lounge, I bumped into a fellow HEM/ONC mom. I spoke with this mom for an hour and she was telling me how horribly she is being treated and how the staff at the hospital are making her feel stupid for wanting to spend every moment by her daughter's side. Mind you her daughter is critical, and is on life support. I was so insensed by her story, how she is being treated, and I could go on. I told her nothing about this situation was her fault, and the fact that she wants to spend this time close to her daughter is 100% natural. If others are giving her a hard time, the problem lies with them! Well you know I couldn't leave it alone. When I see an injustice, I mobilize forces. I asked her if she spoke to Julie Andrews at the hospital. Julie is our patient advocate and knows how to get people jumping. The mom was too distraught to call but asked if I would. So when I got back to Mattie's room tonight, I left Julie a detailed message. But why on earth would the hospital staff do this to a woman who is in the process of losing her daughter? There really isn't any answer, but sometimes I feel like I am on a crusade to education doctors and residents. I know I have other fish to fry, but some how helping others even in this time, makes me feel better.

So when are we getting out of the hospital?! Great question. Mattie's counts are still zero today. Dr. Toretsky is suggesting that Mattie's counts may begin to rise on thursday, and he probably could go home this weekend. Great timing, no? Just in time to come back on monday for chemotherapy! What a life on so many levels. I want to thank all of you for e-mailing, checking the blog, sending gifts and cards, and for staying connected with us through this journey. These simple acts of kindness make a world of difference to us.

Sunday, December 14, 2008

Sunday, December 14, 2008

Mattie had a decent night of sleep last night, and his stomach is feeling better as well. Nexium seems to be doing the trick. Mattie's absolute neutrophil count is still zero, so we sit and wait until it reaches at least 250 to be discharged from the hospital. Mattie had a good day with Peter, doing puzzles, building, doing arts and crafts, and listening to Christmas music. This afternoon, my parents came over and spent several hours with Mattie. They brought him a wonderful pirate 3-D puzzle, which they worked with him on while Peter and I went out to lunch together.

Peter and I really needed the chance to catch up with each other. We haven't done this in so long, we actually sat in silence for a minute to regroup. We talked about Mattie's care, how the next few weeks will work out, and our expectations for the January 12 scan and how to attack the problem if the results are not what we are hoping for.

I spent part of the day working with Christine on Christmas present ideas for Georgetown nurses and staff. Christine spent most of the morning going through this with me, and by the end of the day things were really coming together. As most of Team Mattie knows I am in no mood to do Christmas shopping or for the most part to celebrate Christmas. So Christine volunteered to help me brainstorm gift ideas, purchase them, wrap them, and help me distribute them. We are not talking about just one or two gifts either. By the time I finished the Georgetown list, I had more than 26 gifts for Christine to work on. I can't thank Christine enough for helping me. Christine is a good friend, and I love her level of organization and efficiency! I am so fortunate to have such a friend in my life.

This evening I spoke with Mattie's nurse about my concern that his reaction to the first platelet transfusion wasn't well documented. It seems to me that there should be some sort of alert that anytime a platelet transfusion is ordered for Mattie, that it signals them to the fact that Mattie needs to be premedicated. Peter and I made enough of an issue out of it tonight, that Tracey, Mattie's nurse, fixed the problem. I just worry what would of happened to Mattie if Peter and I weren't around. There have to be safety checks in the system!

We want to thank the Doane family for their wonderful Italian dinner feast. Mattie loved the spaghetti and the pastas and cheesecake were great! We are slowly opening and savoring the gifts you brought us. That was SO thoughtful and generous of you, and we look forward to opening more tomorrow. But the Godiva truffles are very special, and Mattie loves the holiday cookies and the pen. It was wonderful to see Abby and Emily tonight as well. Mattie did not want them in the room, but both girls told me that Mattie was their friend and that they wanted him to get better and that they even made a handmade gift for him! It was darling, and so sincere. Thank you for all your support!

We also want to thank Kim for the wonderful kaleidoscopes. Mattie and I constructed one of them today, and it was fascinating to learn the process of putting a kaledioscope together. What a beautiful gift, and I remember when I received my first kaleidoscope as a child. In fact, I loved it so much, I saved it and passed it down to Mattie. Mattie always loved it, and now he has his own special one! Thank you Kim. Also Mattie received a great set of Knex from his Grandma and Granddad. Mattie loves building and using his hands, so this will keep us busy tomorrow.

As I was heading to the microwave tonight to heat up Mattie's spaghetti, I ran into Dr. Bob. I was surprised to see him, because most doctors don't make visits on a sunday night. But again, Bob is more than just our doctor. Bob spent some time with all three of us, and I think he got a kick out of Peter and Mattie trying to assemble this 3-D pirate ship. The 3-D puzzle was such a challenge, that Peter got out the hot glue gun to attach the pieces. Thankfully Jenny and Jessie left us the glue!

As we head into monday, I am preparing Mattie for the fact that my parents are headed back to Los Angeles on tuesday. They have been with us since September, and have been through many highs and lows through Mattie's illness. Mattie has been angry at a lot of people lately, and my parents have been the recipients of a great deal of this anger. This is not easy for anyone to take, especially for grandparents who have really been present for a great deal of his development. They have played a significant and active role in his upbringing, and I can only imagine how hurtful his behavior and treatment has been for them. However, they rose to the occasion, and respected when he needed his space and when he needed attention. I certainly understand that my parents have to go back home, but it will be another adjustment for us. It is always nice to have an extra pair of hands around, and of course to have the emotional support. Seems to me you always turn to your parents in such times of crisis, and they have really been there for us. I have appreciated their time, care, generousity, and support over the last couple of months, and probably don't tell them that enough. However, I know they will be back in the spring for Mattie's birthday and his Osteosarcoma walk! I pray that things are better by the spring!

As I sign off for tonight, we are listening to Christmas music in our room, and Mattie's feet are touching the floor and he is dancing in his wheelchair. I just peeked at him, and he gave me a huge smile, and he is wearing a great jingle bell that the Doane's gave me. He looks like a cute elf who is jingling to the music. But I am biased. Let's keep hoping that his blood counts rise and that we can get out of here ASAP because we return next monday for chemo.