Thursday, December 4, 2008

Thursday, December 4, 2008

Quote of the day (Thanks Mommy!): My mom wrote, "In you and Peter's pursuit of excellence in the search for a cure for Mattie , therapies for a ideal recovery of the use of the three limbs affected by the disease and in trying to stabilize his mental state that has thrown him for a loop by the extreme trauma, stress and medications that he has been exposed to over the course of the last 4 months to help him through the curative process, your determination and strength of character, love and devotion come shining through. This quote is for you both."
To find what you seek in the road of life, the best proverb of all is that which says: Leave no stone unturned. ~ Edward Bulwer Lytton

Wednesday night wasn't a great night either. Mattie spent a great deal of it up, uncomfortable, and agitated. Peter and I landed up changing a lot of linens, as Mattie went to the bathroom several times in them. The amount of fluids he is intaking to flush out the chemo each night is overwhelming. So Peter and I started today with a major sleep deficit. It was funny at 6:30am, we finally got Mattie calmed down, and the nurse told us to go back to bed, but that wasn't about to happen. Peter had to get it moving to go to work, and I wouldn't let Peter leave before I could take a shower. Some people need coffee to start their day, I need a very hot shower.

The day to me was an absolute blur, and isolated blur. Mattie wouldn't let me leave the hospital room for the most part. Ann and Linda both came to visit with Mattie today, but he wasn't receptive to either of them. This of course worries me since he is very fond of these ladies in his life. Linda did bring in a computer today with a camera, and she was able to coordinate with Peter ahead of time, and basically Mattie was able to webcam Peter. Mattie thought it was very neat, and Linda thought of this idea because Mattie has been pining for Peter all week. Peter did wake Mattie up today before he left for work, and they said goodbye to each other. However, when Mattie woke up later in the morning, he was hysterical. He had no recollection that he spoke to Peter and hugged him before he left for work. Again, we needed to medicate Mattie this morning, but the goal today was to encourage Mattie to use his oral anti-anxiety medication rather than relying on the IV anxiety medication.

Ann came today and brought us a wonderful lunch. Ann also brought an incredible bag of tricks with her. Mattie and I did make Ann's prop plane today and he loved the gak like thing. That occupied Mattie for a good 15 minutes. Amazing! We will save the other goodies for another day, because I know they will capture his attention, and I need this kind of stuff in my bag of tricks. While Mattie was playing with this sparkly gak (which is like a slimy clay), I ate lunch. Ann brought me this wonderful vegetable sandwich. While I was eating the sandwich, I tasted some kind of herb in the sandwich that I have had before, and love. But it was like I was having amnesia. I couldn't remember what the herb was, or where I even had it before. This seems like such a trivial thing, but this bothered me for the next 30 minutes. I still can't remember what it is. I chalk up this memory lapse to intense sleep deprivation. Thank you Ann for coming today and for understanding Mattie's mood and behavior.

This afternoon Linda came back into Mattie's room. She had a hammer and a wood craft kit with her. Mattie needed the hammer for his wooden prop plane set, so he accepted Linda when she came in. They continued building together and while they were working together I rested for a bit on Mattie's bed (right next to him). Then Denise, Mattie's social worker came to visit, and at that point, I decided to leave the room for a few minutes to do the laundry (I never knew doing the laundry could be considered such a wonderful respite). In any case, while I was doing the laundry I met up with my parents. They told me about the wonderful time they had with Honey today. Honey is one of my supervisors at the George Washington University. Thank you Honey for intiating this invitation. I know my parents enjoyed getting to know you.

The 20 minute escape to the laundry room was good. I got a minute to just be, without hearing and meeting someone else's demands. Pretty soon thereafter Peter arrived at the hospital, and Mattie was very happy to see his dad. This evening I had the opportunity to meet the third child psychiatrist in the practice here. She was great. I found her very helpful and gave me some useful and helpful strategizes on how to deal with how Mattie relates to others in his life. The problem with Mattie's situation is it is hard to determine what issue lead to the anxiety. There are so many events and issues that could have produced the anxiety. But the more I was talking to the doctor, the more I realize that Mattie too has signs of depression. He is irritable and definitely shows a lack of interest in most activities. This saddens me because Mattie has never been a kid who got bored easily.

As we head into friday, Dr. Toretsky arranged for Mattie to get a chest CT. Why this? Well I am concerned about more metastasis. The next likely place the tumor cells would travel is the lungs, and Mattie has technically been off of chemo for quite some time between surgeries. So I am worried, and can't have peace of mind until such a scan is performed. I told this to Dr. Toretsky on monday, and he immediately took care of this issue. However, I am now worried. Do I want the result, can I handle the result? Hopefully God has kept Mattie safe during this time off chemo, in order to give him a fighting chance.

Today I received a lovely e-mail from Debbie Pollak, Mattie's art teacher at SSSAS and huge Mattie supporter. For the first graders community service project this year, Debbie had all the first graders look at Mattie's "Mr. Sun" painting and she had them complete an open ended sentence. The responses were priceless, special, and touching. I am so happy Debbie shared them with me. This is a special group of children, under the direction of a creative and loving teacher.

Debbie wrote the following to Mattie: "Dear Mattie, I showed your painting to all of your first grade classmates. Here are some messages to tell you how your painting makes them feel. They are writing you letters too. I will get them to the post office at the end of the day so Mommy and Daddy can give them to you as soon as they arrive at your house. I love you, Ms. Pollak"

All of the children completed the phrase….. “When I look at Mattie’s painting, I feel…….

Ms. Flannigan's class:

Kelly… loving, very colorful and joyful.
Cameron…makes me feel really, really happy and really good.
Reid…colorful, joyful and good.
Nikki…makes me feel bright and kind.
Kate…dramatic, joyful and loving.
Katherine…loving and warm.
Eliza… happy and beautiful.
Andrew…colorful and loving and generous.
Sydney…joyful, happy, warm, generous and kind.
Jessica…bright and excited.
Paul…me feel happy and warm.
Cade ….nice, good, and joyful.
Nick… joyful and hot.
Mya… colorful and beautiful.
Elizabeth…like having happy tears and very loving.
Tyson…happy, generous and glorious.

Ms. Fisk's class
This class had to finish this sentence……When I see Mattie’s painting, I feel like……
Missy…..the painting is great.
Caroline…I want to go outside.
Luke…that I want to20paint like you.
Claire…I am looking at great beauty.
Woods…playing WII with you.
Charlotte… I want to paint a sun too.
Darius…I wish I could paint just like you did.
Peter…I want to draw.Jordon..I want to play with you.
Tyler…I want to play with you. I can help you play.
William…going to the beach so I can feel the warmth of the sun.
Alexandra: you are a great painter.
Maddy…I am speechless.
Beth.. it makes me want to see you.
Sydney…like my heart is singing.

Ms. Haughton's class
Cedric…Your painting looks awewome like it is in a real art museum.
Mason…Your painting looks brighter than the sun.
Charlotte…I love the colors you chose for your painting.
Nicholas… Your painting is excellent.
Tori…I love your painting sooooooo much.
Xander… Your painting is PERFECT!
Sydney…Your painting looks so amazing.
Luke…Your painting looks so good, that I wish I could paint as well as you did.
Hanna… Your Mr. Sun painting looks really real.
Bennet…I think your painting looks very creative.
Liliana..Your painting looks so good that it makes me want to cry happy tears.
Luke…The paintng makes me feel warm like the sun.
Frederick…I think your painting looks shinning.
Latric… Your painting looks extra special.
Florence…Your painting makes me feel very happy.
Fleming…Your painting looks beautiful.

Ms. Knowles' class
The class finished the sentence: I love your painting because it....
Catherine…is soooooo beautiful.
Claire…makes me want to go to the beach.
Charles…shows what a good painter you are. I wish I could be as good at painting as you are.
Jay… is beautiful.
Kazu…is as bright as the sun.
Shivani…. Makes my day.
Bridget..inspires me to do a painting.
Abigail…makes me happy just to look at it.
Alice…is simply lovely.
Brian…is so colorful.
Lily…makes me wish you were here with us.
CJ…is so bright and cheerful.
Killian…has so many colors in it.
Sylvie….looks magical.
Cavin Reed…is so glimmering on this gloomy day.

We want to thank the Fortune family tonight for a lovely dinner. It was very tasty and I truly appreciate the chocolates, but most importantly the Trauma book (Trauma through a child's eyes) you bought for me. I very much look forward to reading through it. Mattie loves the Scooby Snacks! Thank you! I want to share a prayer we received today from Dr. Aruna Nataranjan. Dr. Nataranjan is a PICU intensivist, and helped us tremendously during Mattie's recovery from his second major surgery. Our family has grown very fond of her. She is so competent and compassionate.

Saint Theresa's Prayer
May today there be peace within.
May you trust God that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith,
May you use those gifts that you have received, and pass
on the love that has been given to you.
May you be content knowing you are a child of God.
Let this presence settle into your bones, and allow your
soul the freedom to sing, dance, praise and love.
It is there for each and every one of us.

At the moment, as I type this blog, Mattie is sitting up in his wheelchair (under the twinkling Christmas lights in our room), and watching the movie, The Wild. We have never seen it before, but Mattie is glued. It is about animals escaping from the zoo. A concept we thoroughly can relate to. Please, please, please think positive thoughts tomorrow as Mattie gets his CT scan at 10am!

Wednesday, December 3, 2008

Wednesday, December 3, 2008 - HAIL TO ATIVAN!

Quote of the day (Thanks Daddy!) which my dad felt applied to Peter and I: "Winners are not those who never fail but those who never quit." ~ Edwin Louis Cole

Tuesday night was a night to remember. Mattie was up and down all night, but by 4:15am, we weren't prepared for what hit us. Mattie woke up disoriented and screaming. The screaming and crying then became uncontrollable. Mattie started to flail his useable leg. Peter and I started looking at each other, and could quickly see after trying to reason with Mattie (which was impossible) that we needed medication right away. So Mattie's nurse brought in versed, which is a quick acting anti-anxiety medication. It is fast acting but its effects don't last long. By 6:30am, we were right back in the hysterical, irrational, and angry state. Again we gave him versed. But by this time, Peter and I were besides ourselves. We both feel like the walking wounded and now the littlest things set us off. At around 7:30am I sent an e-mail to Dr. Toretsky and then Peter called him on his cell phone. Dr. Toretsky was very responsive and came up to see us right away. Dr. Toretsky recommended that Mattie get Ativan, a more long lasting anti-anxiety medication today. Ativan was administered in Mattie's central line at 9am. By 9:15am, things started to change for the better. Ativan is my new found hero. Mind you at low dosages Ativan doesn't work for Mattie. It makes him hyper and agitated, but at higher dosages it works wonders. I could see Mattie physically and emotionally calming down. He engaged in play with me, spoke to me, and was very coherent and rational. He also was wide awake the whole day, and wanted to do things, unlike the state he was in on tuesday.

Ativan is not a long term solution, and Mattie is being transitioned to oral anti-anxiety medication. Seeing Ativan work so effectively only further confirms to me that Mattie does indeed have anxiety and it is not some simplistic behavioral/discipline problem. The medication is so needed to stabilize his mood, and then it is my hope that other therapeutic modalities can be used to help Mattie through this so that he can continue to receive chemo treatment successful. I contacted several of my colleagues today to get their perspective on Mattie's situation and the community resources I could turn to. As many of you know Mattie isn't very compliant with oral medication. So when the hospital hands me the crushed anti-anxiety medication I now stick it in Dunkin Hines vanilla frosting. Thanks Mommy and Daddy for bringing the frosting over today. Frosting is so thick and sweet, you can conceal anything in it. The prior night, I used our trusty friend, Karo syrup to administer the medication (needless to say Mattie had great out put today!), but because that is a laxative, I can't use this consistently, which is why I came up with the idea of using frosting.

Mattie and I built a lego house today. We literally worked on it from 9:15am until 5pm. It was a full day project, but one he was committed to and focused upon. Also in the midst of what we are dealing with we are trying to get in the Christmas spirit. Linda brought us a mini tree with lights and decorations yesterday afternoon, and last night Mattie got out of bed into his wheelchair and started decorating. He was motivated, and we even strung lights from the ceiling of the room.

This afternoon we had a visit from Alison. Alison brought some incredible hands on gifts. They all positively stimulated his tactile senses. Mattie also loves the Santa figure magnet that is now on his wheelchair. We also appreciated lunch. Mattie particularly loved the pizza. He ate several pieces! Alison joined us in building the lego house, and Mattie enjoyed directing Alison and I around. Thank you Alison for sharing part of your afternoon with us.

Linda also came by and she continued the lego project with Mattie. It took three adults and one child to build this house. But what a beautiful house it is! Linda also brought Mattie some fantastic balloons from the Winter Wonderland party that the hospital had today for the children. Later in the afternoon, Mattie had a visit from Susan D. (his school counselor). Susan bestowed many wonderful gifts on Mattie, such as an adorable Santa hat with snowmen on it, a wonderful vanilla shake, and miniature christmas lights that Mattie happily put on his lego house. It was the perfect gift to match the house. We also want to thank the SSSAS first grade class that created such beautiful Christmas cards for Mattie. They are very thoughtful and meaningful. Thanks Susan for your visit, as always my parents enjoyed chatting with you too.

Mattie also was visited by Anna, his PT, today as well as his "big brother" Jey (ie Mattie's favorite CT technician). Both Anna and Jey were impressed with Mattie's use of his hands and how he uses his right hand and left leg to get things done. Mattie was very motivated to play today, and to me this was a positive sign. He still refuses talking and having most people in his room, but I think those things can be worked on, whereas the hysteria and irrationality we experienced lately were beyond our control and reason.

This evening at 6pm, Dr. Toretsky had a meeting with Peter, myself, the residents, and our nurses. He wanted to coordinate Mattie's care, with regard to the administration of anxiety medication. We also talked about ways to structure Mattie's day to give him a sense of security and routine. It us our hope that this structure will also ease the anxieties of being in his current situation. It was a productive meeting.

Thank you Beth E. for a wonderful dinner tonight. Your crab cakes were delicious and your brownies provided me fuel to write the blog! We look forward to Mr. Betafish joining our life in the near future. Thank you for such a thoughtful gift. Tonight we are quite tired. In fact, I am falling asleep as I am typing this. At the moment, Mattie is getting infused for the third night with chemo. Interestingly enough this chemo is clear in color, like water. It lulls you into a false sense of security that Mattie is only receiving fluids and not medication. Whereas some of the other chemo drugs Mattie has taken are bright red and bright yellow. We are signing off tonight in hopes of getting a decent night of sleep. I at least feel comforted that a plan is in place to deal with Mattie's emotional needs. But under these trying circumstances it is hard to think clearly, to stay optimistic, and not to snap at one another. But we continue. As my friend Kim (Mattie's preschool director) says, "continue, continue... it is a word filled with HOPE."

Tuesday, December 2, 2008

Tuesday, December 2, 2008

Mattie held his own last night during chemo. He was still up when Peter and I went to sleep. He went to bed while watching a Scooby Doo video. He has trouble relaxing and shutting down, more so these days than ever before. Mattie was up several times during the night because he had to go to the bathroom, not unusual considering the quantity of fluid being pumped into him. As one point during the night, Mattie did not make it to the bathroom in time, and Peter and I were lifting him with the help of Melba (Mattie's nurse) and trying to place clean sheets under him. Between the bathroom runs and vital checks, it felt like a very busy night.

This morning Mattie was resting peacefully, but I had to wake him up since the hospital was changing all the mattresses in the PICU. I did not want the staff to move Mattie, so I woke him up and got him cleaned up and transferred into the wheelchair. Mattie did not take well to being woken up and this started a chain of other reactions. While in the wheelchair I tried to offer Mattie different activites to do together. I even asked him if he wanted to visit with Brandon or go to the childlife playroom. He refused all ideas. It was then that he asked where Peter was. When he found out that Peter left early for work, all hell broke lose. Mattie started to scream, "I want my Daddy. Daddy, Daddy, Daddy!" At first I understood Mattie's desire to be with Peter. But the more hysterical Mattie became, the more I was unable to reason and rationalize with him. I tried every thing possible. I listened, I empathetized, and then I explained that when Daddy can't be there for him, I am. I even called Peter at work three times during the day to let Mattie talk with him and they exchanged two e-mails. I thought we would break through this fixation on Peter by mid day, but no such luck. The issue became more pronounced as the day wore on. By noon, my parents came to visit and they couldn't get over what they were seeing. By 12:15pm, I couldn't take the screaming, crying, and the irrational behavior. Mattie was also not allowing medical staff into the room. So I went out to the nurses' desk and asked that Mattie be given versed, which is an anti-anxiety medication that works instantenously, but its effects only last for about 20-30 minutes. The medication calmed him down a bit, he was still upset, but not looking like he was going to jump out of his chair or hitting me with his leg.

Soon thereafter, Grace (my friend and RCC mom) came to visit me and brought us a wonderful lunch. Mattie loves the Scooby Doo pasta. It is his meal of choice these days. Also Mattie LOVES the snowman nightlight and wonderful books, not to mention the beautiful holiday cookies. Thanks Grace for visiting, and I wish we had an opportunity to chat today.

But by 2:15pm, Mattie was screaming again in full force. Again, I asked for the medication to calm him down. During the afternoon, I kept growing more and more concerned with the behavior I have been observing and experiencing with Mattie over the past 12 days. But today's behavior disturbed me because I could no longer console and comfort Mattie. In addition, I couldn't rationalize with him. So at which point, I went out to see when our psych consult was coming to visit us. The residents gave me some excuse that they couldn't get a hold of the psychiatrist. It was at that point, I started yelling. I told them this wasn't acceptable. That I had been waiting all day for this doctor, and if they can't get someone from the hospital to help me, I was going to find someone on the outside. That seemed to get results. After my tirade, I went back to the room, and in between holding Mattie and dealing with his fits, I logged onto the George Washington University's library database system. I have learned when all else fails, research the problem. So I started using all sorts of keywords, until I found something that intrigued me because it described Mattie's situation to a T. It is "medical PTSD." I have felt for a week now that Mattie has PTSD like symptoms, but I was unaware that one can develop PTSD from a medical procedure. It certainly makes sense, but I found reading the abstracts fascinating. In addition, parents of children with cancer can also get PTSD, you don't have to personally experience the traumatic event to be able to get PTSD. It can be your emotional reaction to observing the traumatic event. Not that this describes me, but I found it interesting what a profound impact cancer can have psychologically on a patient and his/her caregivers.

At around 3pm today, my friend Margaret (Mattie's first preschool teacher) came to visit me. She brought hot teas and some delicious cakes. Mattie later enjoyed the vanilla cake. It actually made his afternoon. Which wasn't easy to do! Margaret and I were having a nice conversation, but Mattie's doctor wanted to talk with me, so our visit was very short. Thank you for visiting and for listening.

I spoke with Dr. Toretsky several times today. I am sure by now the hospital staff thinks I am unstable. I think when you are caring for someone who is affected so deeply emotionally, it is almost impossible for it not to take its toll out on you. None the less, when I spoke with Dr. Toretsky today he did reveal to me that Mattie's emotional reaction is considered on the extreme end of the spectrum based on all the other osteosarcoma patients he has treated. Part of me explains this reaction to the fact that Mattie had four tumor sites, unlike the typical one tumor site most children deal with. Of course I realize each person is unique, and what can impact one person a certain way, produces a totally different reaction in another. Any case, Dr. Toretsky has been very supportive of our need to deal with Mattie's acute anxiety.

I also had the opportunity to talk with Mattie's social worker today. As I was talking to Denise I began to put two and two together. If Mattie is really dealing with trauma, then being around the people he trusts (myself and Peter) is not that unusual. Certainly he would cling to us dearly. As we kept on talking I then realized a technique used by one of Mattie's nurses was more harmful than beneficial. You may recall that I mentioned a nurse came in yesterday and basically told Mattie not to yell, to stop screaming, to calm down, to focus on his sound machine, and not to yell until she came back into the room. While doing this, I was removed into the hallway. At the time, I did it, but upon further reflection I realize how detrimental all of this was to Mattie. In fact, last night Mattie told me he was frightened when this nurse came in and gave him a talking to. I am no trauma expert in any sense of the matter, but it seems like trauma 101 that if you remove the safety objects or people for the trauma survivor, then this in a way could exacerbate the trauma.

I had the opportunity to meet with a psychiatrist today who got to see Mattie in full form. In order for me to talk with the doctor, I had to hold Mattie's ears closed and wrap his head in my shoulder. The psychiatrist understood and observed my concerns and agreed that prescribing Mattie anti-anxiety medication is a good way to proceed in the short term. However, like we both know that will not get to the heart of the issue. But I feel unless we stabilize his behavior, he won't be able to comply with treatment, he won't be able to participate in physical and occupational therapies, and certainly he will sink further into social isolation. I am very conservative when it comes to psychotropic medications, but in this instance, this is in Mattie's best interest. The psychiatrist told me that most parents under these circumstances would have cracked along time ago, and Dr. Toretsky told me yesterday that we was amazed with the way I handled Mattie during one of his tirades. So much so he thought I deserved a hug.

So tonight the issue is to convince Mattie to take this anti-anxiety medication, which is administered orally. He is not very compliant with taking oral medication. Toward the end of the evening Bob came to visit Mattie. Bob came to remove Mattie's dressing completely on his right leg, and partially on his left arm. We gave Mattie some medicine to manage this, but Bob and Mattie had their usual lively conversation, and Mattie did not treat Bob like I observed Mattie treating everyone else today. In fact, Mattie told Bob what Sparky's (Mattie's central line) middle name was today. A high honor. In return Bob told only Mattie his middle name. It was a very cute and tender dialogue.

I received a lovely e-mail today from Tad. Tad is Kazu's dad (Mattie's friend from SSSAS). Tad is incredibly supportive of me throughout this time, and today he wrote, "Do not listen to that doctor's indications on Mattie's fear cycle. Cancer/disease and the related physical and emotional "battles" are more than enough to create fear in Mattie. As you have observed so often, Mattie is far more sensitive to what is going on than many give him credit for, particularly those who are not with him 24 hours a day. Contrary to the doctor's hypothesis, you are the source of Mattie's security, and the target for whatever fears Mattie projects. As the source of comfort, with who else would he share his daily and innermost fears? As with all such things, it is a great burden, but also a mark of great love."

After the day I have had, I feel frazzled from my head to my toes. I am sure Peter isn't far behind, because I kept calling and e-mailing him today. Amazing how he got any work done. I frankly don't know how we will manage with the second administration of chemo which is happening as I type this. Erin, our nurse, told us that one of the bottles of chemo Mattie is receiving tonight is $15,000 alone. Mind you he is receiving five bottles of this stuff this week alone. Got to love it, no? But in the midst of all this chaos, we had a delightfully tasty dinner thanks to the Arends family. The cheesecakes were the envy of the PICU. My hope for the next day or so is that Mattie complies to take his medicine and that he continues to do well on his new chemo regimen. We are so distracted and focused on the emotional things, that we can't even process what is going on chemo wise.

I end tonight by thanking Linda and the childlife interns today. Linda brought a whole bunch of Christmas things to Mattie's room in hopes of cheering him up and getting him to participate in decorating. So far, he isn't interested, but I am hoping with time this week he will change his mind. The interns today helped me do all our laundry, since Mattie wouldn't allow me out of the room to get this simple task done (a task that I happen to like because it gives me a break from the usual room routine).

Monday, December 1, 2008

Monday, December 1, 2008

Message of the day (Thanks Charlie!):
Charlie wrote, "This is how those of us who read the blog see Mattie:"

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. ~ Christopher Reeve

"And what we all pray for:"

Expect to have hope rekindled. Expect your prayers to be answered in wondrous ways. The dry seasons in life do not last. The spring rains will come again. ~ Sarah Ban Breathnach

There is so much to report, I don't even know where to begin. I will start by telling you about sunday night. Mattie had an awful night of sleep. Basically he kept me up with his night terrors until 5:30am. At which point, I awoke Peter and told him he needed to go downstairs and spend the next two hours with Mattie so I could get two hours of sleep. I felt bad doing this to Peter but if I did not get some sleep, I knew I couldn't function today. I tried to encourage Mattie to take pain medicine last night, but he is refusing all oral pain medications now. I think he understands the connection between the medicines and his night terrors.

Mattie and I got dressed and packed up to go to the hospital today. Because his wheelchair is SO bulky, I couldn't take much with me to the hospital, the rest of the things we needed went into Peter's car. Getting Mattie to the hospital today was a production and fortunately my parents helped by dropping us off at the hospital door so we could just roll right on in. We went to the clinic today so Mattie could have his check up first before checking into the hospital. We waited in the clinic from 11am until 2pm. While we were waiting to see Dr. Synder, Mattie played with Jenny. Jenny and Mattie are building a Christmas house. While they were doing that, I went to register Mattie for admission into the hospital for treatment. This is a task that truly upsets me each time. It is such a bureaucratic waste of time and energy. Though I practically know each person in admissions now, every time Mattie comes to the hospital I have to register him. Really this would be fine if we weren't such repeat customers. But I really feel cancer patients should have a streamlined admissions process. As a parent of a child with cancer, I am so worried about everything, should I be worried about the paper work too? I got so insensed by the process (mind you I have done it lots of time before, but the more tired I get, the less patience I have for this kind of busy work) that I called our patient advocate, Julie Andrews. I will see what Julie can do about this, because in my book I want to help myself and other families dealing with this additional stressor.

When I got back to the clinic, I found that Mattie was playing nicely with Jenny, until a nurse came over and told Mattie she had to check his weight. She wanted to put him on a bed and weigh him that way. As soon as Mattie heard this he instantaneously got scared and cried uncontrollably. Then started screaming that no one was allowing him to have lunch. I negotiated with him to pick a time the nurse could come back and weigh him. He selected 20 minutes and during that time my parents went around campus and brought back a mini cheese pizza for Mattie (which is what he wanted). I had the distinct feeling that things were going to get ugly before they were going to get better today. Twenty minutes later, the nurse and Drs. Toretsky and Synder decended upon Mattie. The whole next episode was painful to watch, much less to experience. Dr. Synder wheeled Mattie back to an exam room, and Mattie was clinging to me. So picture me walking sideways, with his arms wrapped around my neck screaming. When we got to the exam room, we tried to explain what the doctors needed to do and why he needed to be weighed. The nurse was going to pick Mattie up and place him in the bed, and I basically told her not to touch him. I then asked Mattie to comply and stand up himself and walk to the bed to be weighed (they can weigh you in a bed, because they can zero out the bed, and when you sit on it, it can calculate your weight). Mattie went along with this, but he really did not want to sit on the bed, much less lie down on the bed for this process. During this entire time, Mattie was absolutely hysterical, wouldn't talk to anyone but me, and was inconsolable. It was a very real fear for him, not the act of a child being non-compliant or testing the waters. All the doctors left the room, because Mattie demanded they leave, and the nurse and myself were left in the room. However, Mattie just got so upset with the idea of sitting on a hospital bed, that it was almost too much to handle. So finally I asked for a scale to be brought into the room, because Mattie would be happier doing it this way rather than being confined to a bed. We finally got his weight this way. Throughout this ordeal, my parents and my friend Lorraine were in the clinic watching and hearing this emotional meltdown through the door. The interesting part is that both Drs. Toretsky and Synder got to see a glimpse into the kind of week Peter and I have been dealing with at home. A week filled with anxieties, fear, and emotional outbursts. Both of them commended me on my patience, and then said they couldn't have handled Mattie the way I did. They also then started mobilizing and finding ways to help us through these issues with Mattie, because at this rate, I won't be able to sustain Mattie's care. This was blatantly obvious today when they saw his reaction to a simple request. I have been complaining all week about Mattie's fears and anxieties, but I guess seeing the behaviors unfold in front of you makes a lasting impression.

We then moved Mattie upstairs to the PICU. Mattie was greeted by Linda, Miki (his nurse) and Jane (one of Mattie's PICU nurses). Linda gave Mattie a remote control airplane and was able to encourage Mattie to go to the playroom. Mattie also met up with Brandon (his big buddy) today in the playroom and they built some legos together. While Mattie was gone for a little while, I ate a nice lunch. I thank the Bentsen family for thinking of me. I loved the dumplings and soup. It hit the spot! Thank you for also dropping off two wonderful gifts for Mattie. I can't wait to do the gingerbread train with him. While eating I spoke with Lorraine and my mom and I told them if I should survive this process, I plan on starting to do things I enjoy, rather than what pleases others or what others feel I should be doing. This is a big revelation for me! Thank you Lorraine for your visit today. Mattie loved the cupcakes and the chips and Peter and Mattie played tic tac toe together tonight!

Mattie continued to be agitated for most of the afternoon. He had a meltdown about the type of legos I brought to the hospital, and thankfully my parents ran back home for me to bring the type of lego he wanted. Dr. Toretsky then paid me several visits in Mattie's room. The first time he visited Mattie was crying and screaming, and the second time, Mattie was asleep, most likely from all of his tantrums. Jane (Mattie's PICU nurse) at one point came in and told Mattie that he needed to stop screaming. That no one can help him with all the screaming. She told him to calm down, focus on our sound machine, and take a deep breath. They had me waiting in the hallway while all of this was taking place. Mattie did quiet down. So some things were concluded today. One, Mattie isn't really experiencing pain, he is dealing with anxiety (which is what I have been saying all along), and two, Dr. Toretsky explained that Mattie has set up a bad cycle with me. Because I was primarily responsible for his care at home and did not have a whole hospital staff at my disposal, Mattie learned how to act in such a way that would guarentee my 100% attention. I am sure that wasn't an easy message for Dr. Toretsky to deliver to me, and frankly I have mixed feelings about what he is saying. Part of me agrees, certainly my behavior impacts Mattie's. However, from a parent's perspective when your child is in fear, can't sleep, has gone through so many traumatic events, it is hard not to want to comfort him. At first I felt bad, but as I have been thinking about it, I use Sandra's (our in home nurse) acronym, WTF!? I am doing the best I can do, and I know Mattie's fears are real and I did the best I could to keep him safe, secure, and protected. Tomorrow a psychiatrist is coming up to talk with us. To evaluate the situation. Mainly because I want to help Mattie get through his fears and anxieties, I am willing to deal with this and strategize with this doctor. But I am in no mood at this point to be hearing how I helped contribute to Mattie's emotional condition.

This evening Mattie had a visit from Zachary (his close preschool buddy) and his mom, Katie. I thought Mattie was going to throw Zachary out of the room, but instead Mattie was thrilled to see him. Zachary and Mattie started doing legos together and Zachary was at times acting like Mattie's hands when Mattie couldn't do something. It was amazing to see. Mattie and Zachary have a special connection that I suppose even such an illness can't break. Zachary just rises to the occasion. It perked Mattie up and Mattie even ate a chicken nugget during the visit. After a day we had, it was incredible to see this transformation. Mind you when Katie and Zachary arrived I was sitting outside the room, giving Mattie space. Thank you Katie for a wonderful dinner and a nice chat!

Mattie's chemo began tonight at 9pm. Mattie needed a whole day of hydration in order to meet the criteria to start chemo. Mattie already had his Etoposide administered tonight, and managed that well. He is currently getting an Ifosfamide infusion. After the four hour infusion, Mattie is administered Mesna. Which basically rescues his bladder from damage from the Ifosfamide. Melba, Mattie's nurse, has already given me a heads up that Mesna can add to the nausea.

I learned today that my friend Sara has a family member who is a reiki practitioner. Sara explained to me that reiki is a form of psychic healing. She said you can do it in person or from a distance. When someone does reiki from a distance they just keep the people in mind that they want to send healing powers to. Thank you Juliet for doing this for our family. All positive energy is needed and appreciated.

I want to end tonight on a positive note. Jenny let me know that one of Mattie's pottery sculptures was entered into an art show, sponsored by Tracy's Kids. Tracy is an art therapist who started the art therapy program at Georgetown. Mattie's sculpture will be featured at the Carroll Square Gallery from December 1 until January 2. The gallery is located at 975 F Street, NW. I am not sure how many 6 year olds get their art featured at a gallery, but this was something that brought a huge smile to my face.

Sunday, November 30, 2008

Sunday, November 30, 2008


Quote of the day (Thanks Daddy!): "Making the decision to have a child---it's momentous. It is to decide forever to have your heart go walking outside your body." ~ Elizabeth Stone

What a great quote. Maybe this is why Peter and I both feel like you might as well have diagnosed us with cancer too, our hearts are breaking!

I am happy to report that Mattie had a good night of sleep on saturday. He literally started getting sleepy at 11pm, and he was so out of it, that I cleaned him up, cut his nails, and put lotion on him. All the sensory things he would absolutely HATE if he were very awake. At midnight, he was completely sleeping, and he did not make a peep until 9:30am. At first I was concerned that the new pain medication was too intense for Mattie, but he takes it during the day as well, and he is always wide awake. It was glorious to see Mattie sleeping and not waking up in pain or frightened. However, throughout the day he complained of having a lot of pain from his head to his toes. I figure this is probably natural since we took him off his fentanyl transdermal patch.

Mattie had two visitors today. The first one was Sandra, our in home nurse. Mattie did not give Sandra a very good greeting. He was screaming at her and demanded she leave. Prior to her arrival, it was such a busy morning meeting Mattie's demands, so much so that I was still in my pajamas when Sandra came over. Peter isn't feeling 100% today either, but was doing some things for work in the morning, and even dropped Patches back off at the animal clinic since we will be in the hospital all week along and we don't want to be worried about her medical needs. Sandra examined Mattie's ulcer today, and right after that Mattie got super agitated and wanted her out of our home. Sandra did not comply but instead started talking to me about what things I need to do in the hospital next week for Mattie. She is very supportive and wants to help us, but I am not sure how to say this, when I am busy with Mattie and dealing with his crying and screaming, this is not a good time to talk with me.

Mattie expressed for the first time today his desire to get out of the house. He hasn't wanted to leave all week. Today he wanted to get a few toys before heading back to the hospital. I broke it to him today that he is going back tomorrow. He wasn't happy about it, but I told him it wasn't for surgery it was for more medicine. He looked at me confused. He knows all the tumors have been removed, so I guess in his mind what else are we fighting?! I explained to him that he has clever bone bugs. That even though the bone bug homes and most of the bugs have been removed, there are a few that are sneaky and can hide in different parts of his body (other than the parts operated on). In order to wipe these bugs out completely, he will need more medicine. That explanation seemed to suffice. But Mattie was focused on going to Target today to find things to bring to the hospital!

At 2pm, Dan, Mattie's in home physical therapist came to visit. Dan was very patient with Mattie, and seems to be able to get Mattie to do his exercises even though Mattie is somewhat scared and agitated by them. Dan comes with a big box of baseball cards and uses them as a reward when Mattie complies. Mattie came away with 13 cards in total today! Before Dan left I asked him if all his cancer patients are like Mattie. His response was a good one. He basically said that the children he works with who have cancer are similar. The littlest things can set them off. My analogy is a rubber band. If Mattie were a rubber band, he would then be stretched out as far as he could go. The more you touch the rubber band in this state, the more fragile it gets, and even the slightest touch (sounds, etc) can cause him to break. Or as Mattie says, "I am going to blow my stack." Unfortunately it doesn't take much for Mattie to blow his stack now a days. Mind you I think all of Mattie's emotional reactions are SO understandable and very NORMAL. But you also need to understand Peter and I are only human, and there is so much of this one can take day in and day out. Particularly what is even more upsetting is what sets Mattie off is if Peter and I move from Mattie's side or God forbid leave the room he is in.

After Dan left, Mattie got dressed up and we all went out on a shopping adventure. My parents joined us. Going out with Mattie now is an experience because it involves a HEAVY wheelchair and many transfers from one seat to another. We first stopped at Rite Aide. Don't ask, but this pharmacy has Mattie's favorite toy metal cars. We transferred Mattie several times today from his wheelchair to the car seat. I think we have mastered this. After Rite Aide, we went to Target, where Mattie got things on his list that he really wanted, such as Scooby Doo graham cracker snacks (which he loves and I can only find them at Target), candy canes, flavored ices, and of course legos!

We got home, we all had dinner together, and now we are slowly getting ready for monday. Mattie had a dressing change of his central line tonight which is a total production. Especially since he is hyper sensitive to all touches now. You should see how horrific it is to pull a sticky bandage off of a child who doesn't want to be touched. Who ever came up with this process should be SHOT. Or better yet should have to perform this on Mattie on a weekly basis. At the moment (9:30pm), Mattie is in a bad mood, complaining of pain all over his body, says he has a headache, and wants our 100% attention.

As you know tomorrow we head to the hospital for chemo. We did decide to go with the additional drugs, Ifosfamide and Etoposide. However, I thought you would like to hear the timing of these gems. The administration of these drugs is over five days. Unlike any of his prior chemos. Ifosfamide is administered for fours hours every day for five days, and Etoposide is administered for an hour every day for five days. After all of this, then Mattie stays in the hospital an additional day for hydration, and just like Cisplatin and Doxorubicin, he will become neutropenic several days thereafter. I don't know about you, but even under the best circumstances (what I mean is no bad side effects), this regimen sounds nasty.

I received a lovely e-mail today from my friend, Susan S. Susan wrote, "It has been on my mind for awhile to do this for you, so today I did it. You have so many wonderful quotes and stories on your blog and while they are good for a day or the week they then are lost into the annals of history so I thought what if they were in a form that you would be able to access more easily?? I know you have received many great books of hope and quotes but these are the ones people sent to you specifically for your family. Anyway I went through (and hopefully got them all) your quotes, stories etc. and put them into one word document so you can read it whenever you want. As the quotes roll in I'll add them to the book." Thank you Susan for this lovely gift. I read over the quotes and stories today, and I find them so lovely to have in one concise place. Thank you for taking the time to do this for us.

On the electronic front, we want to thank Karen, Brian Boru, Ms. Pollak, and Cousin Donna for all the wonderful e-mails and e-cards. In addition, we want to thank Brian Boru (our feline friend) for his care package filled with holiday stamps, a Scooby Doo activity book, stickers, and wonderful lollypops. We think you are quite a cat!


We also want to thank Ashley and Kathy (two wonderful RCC moms) for spearheading a prayer service for Mattie on December 8th. I have posted this information on top of our blog. Our family is deeply moved by the planning of this event. The specifics are: Prayer Service for The Brown Family
Monday, December 8th at 7pm
Church of the Resurrection - Parish Hall
2280 N Beauregard St. Alexandria, VA 22311
Adults Only

I end tonight with a Prayer of Saint Patrick that my good friend, Jen, in Boston sent me today. Thank you Jen!

Christ be with me, Christ within me, Christ behind me, Christ before me, Christ beside me, Christ to win me, Christ to comfort and restore me. Christ beneath me, Christ above me, Christ in quiet, and in danger, Christ in hearts of all that love me, Christ in mouth of friend and stranger.

Saturday, November 29, 2008

Saturday, November 29, 2008

Friday was another rough night. Mattie continues to have night terrors. However, it is not just one time during the night, these episodes occur from 1am until 5:30am. I saw the same sleeping pattern on thursday night that I saw on friday night. At 2:30am, Mattie's screaming was so loud, that it woke Peter up and he came running down from our bedroom upstairs. Peter could also see that Mattie was disoriented and was speaking nonsense while he appeared awake. Needless to say Peter and I are exhausted, which is not a good position to be in with the chemo cycle we begin on monday.


It is no surprise with the level of stress, tension, the emotional rollercoaster we live from moment to moment, and sleep deprivation that one of us is now ill. Peter came down with a violent stomach illness today. I know a stomach bug is going around, and unfortunately Peter got it. He is worn out, tired, and not feeling well. So I have told him to rest and stay upstairs today. Not an easy thing for Peter to do, since he always wants to help and ease the load around here with Mattie.

In addition, to worrying about Peter, I am concerned about Mattie's night terrors. So much so that I felt I needed to do something about it. Some people call 911 when they have a problem, I just e-mail Ann. Ann told me to call Bob at home. So I did! Bob discussed the night terrors with me, and he concluded that they could be caused from Mattie's prolonged usage of fentanyl, which is a narcotic. Bob prescribed something different for Mattie today. However, because this drug is also a narcotic, Bob couldn't call the prescription into the pharmacy. I needed to actually have a written prescription in hand to take to the pharmacy. So I immediately called my parents and told them they had to come over to help me. A last minute request that only a parent couldn't refuse! I told Mattie that he better behave himself with his grandparents because Peter is sick and I had to pick up a prescription at Bob's house. When my parents arrived, so did Sandra, our in home nurse. By now you already know what Sandra came to examine, that's right, the tail bone ulcer. Mattie cooperated and showed her his sore. At this point, he is probably so used to all of us looking at his tail bone, it is becoming second nature for him. After Sandra left, I jumped into the car and headed to Ann and Bob's house. Bob talked me through the pain medicine regimen and then I also asked him for his input about our monday chemo decision. I believe Peter and I have heard enough information to know what we need to do, which is adding I and E. We can't ever regret that we did not treat this as aggressively as possible and we may not get a second chance to make such a big impression on this disease.

Mattie and I spent the afternoon building all sorts of puzzles together. He even played with this flexible tube Kathie gave him yesterday. He was exercising and did not even know it! He even moved his left arm today. He literally lifted it up on his arm rail of his wheelchair. I view that as progress. It is hard to describe what our days are like, they are more like big blurs, where we can't distinguish morning from night time. Since we basically do the same things all hours of the day. My parents came back this evening to visit Mattie. They were expecting Mattie to ignore them again or yell at them, but instead he started to play with them. They built a puzzle together, had some dinner, and are now working on his Mac computer that Mary Dressendorfer, from SSSAS, has allowed him to borrow this year. He is working on designing all sorts of things using Kidpix and having a good time. I view this as good hand exercise as well!


On the electronic front, we want to thank Lorraine, Brian Boru, Emily W., Ms. Pollak, and Grammie for your wonderful e-mails and e-cards. I also want to thank Kathryn for lighting a candle for Mattie at the Duomo in Florence today. We also want to thank Susan D. (Mattie's school counselor) for the wonderful singing Thanksgiving day card and Barbsie for the wonderful "Shut the Box" game. We are looking forward to playing it together. As we head into sunday, we know that we have so much to accomplish to get ready for monday. A day that has come too quickly, and we really need another week to continue to recuperate. I only wonder what Mattie's emotional state will be like next week once we add chemo to his already fragile condition. Thank you for your thoughts and prayers, they are all appreciated and continue to be so needed.

Friday, November 28, 2008

Friday, November 28, 2008

I stayed with Mattie on thursday night and got to experience what Mattie's sleep pattern was like for myself. After last night, I can safely say I don't know how Peter managed this for a week and also went to work. Mattie had me up every 30 minutes. He was whimpering, calling out, at times crying, and said he was having a bad dream. Mainly he was having the same dream, there were a lot of people around him and they were trying to hurt him. Despite looking awake and disturbed by the dream, he was relatively easy to put back to sleep each time. The entire night was like this, and at one point I jumped into the hospital bed with him to rub his leg and try to calm him down. Patches, our cat, was intrigued by this, and she too jumped on the bed. I can assure you this bed isn't big enough for all three of us. Mattie finally fell asleep from 5:30am to 8am. At 8am, Mattie could see it was light outside, and announced to me that it was time to get up. When we got up, I asked Mattie if he was tired. He said that he wasn't, at which point I told him I was surprised by this since he was up most of the night. Mattie turned and looked at me, and with a straight face told me he slept through the night. He meant it too, he had no recollection at all that he was up so often last night. I am staying with him tonight as well and plan on observing what happens again. To me, Mattie is having night terrors. Night terror symptoms are: Sudden awakening from sleep, persistent fear or terror that occurs at night, screaming, sweating, confusion, rapid heart rate, inability to explain what happened, usually no recall of bad dreams or nightmares, may have a vague sense of frightening images. Many people see spiders, snakes, animals or people in the room, are unable to fully awake, difficult to comfort, with no memory of the event on awakening the next day.

Mattie had two visitors today. At 11am, Kathie (Mattie's occupational therapist) came to have a session with Mattie. Kathie is very familiar with Mattie. She worked with Mattie for two and a half years, since Mattie had some gross motor delays as a child. Kathie worked wonders with Mattie back then, and I couldn't think of a better OT to turn to now. I think having a rapport with Mattie is half the battle and she already knows what he likes and what works for him. Mattie is pretty much turned off to most visitors these days. So Kathie was prepared to get tossed out of our home. Kathie came with her bag of tricks. Mattie started out slow for about two minutes, and then I could see Kathie had him hooked. He was playing, was animated, and very involved in moving his right arm. While Kathie was working with Mattie, Sandra, our in home nurse showed up. Fortunately Kathie had Mattie occupied, so Peter and I could talk with Sandra. Sandra needed to see Mattie's tail bone ulcer. If you recall the last time Sandra did this it was a drop down drag out event, which left me feeling very guilty and Mattie very upset. Any case, Peter went to talk to Mattie and told him that he just needed to show Sandra his sore, and then he could go back and play with Kathie. This was a real motivator for Mattie. Mattie cooperated, but as soon as he showed his sore he then told Sandra she had to leave. All I can say is I am so happy we reconnected with Kathie. I have a very special in my heart for the OT work Kathie does, and if anyone can get Mattie moving again, it will be her. Even Sandra wanted to know who Kathie was, because she could see Mattie was very engaged.

Mattie and Peter spent the rest of the afternoon creating their Christmas display of lights. They have been accumulating lights for several months now. Mattie got all bundled up with a hat, scarf, cape, gloves, and a blanket in his wheelchair and was out there directing Peter as to where to place the lights. For just a brief moment today, it was like I saw a glimpse of the old Mattie. It was as if we cracked through the walls and protective shell he has so tightly built around him. Mattie used to be a very verbal child, but now I feel he has understandably regressed back into what he was like in his toddler years. The time period before he used words and could take care of his activities of daily living.

I could see putting together lights and being outside was a great activity for Mattie. It was wonderful to hear him talking and participating in what was going on around him. I tried to take a picture of their display in progress. Our neighbor, Malcolm called us tonight and thanked us for taking the time to brighten up our community with lights. Thanks Malcolm, your call meant a lot.

This week my mom celebrated a birthday, and I took her to see Giselle, the ballet, at the Kennedy Center tonight. My parents and I went out to dinner first and then we went off to the ballet. It was wonderful to leave my caregiving responsibilities behind for several hours and see and hear something beautiful. Giselle, though a sad story, was so well done, and there was so much energy in the air at the performance. My mom and I enjoyed our time together! However, when I got home Peter told me he had a very difficult time with Mattie because Mattie was upset that I wasn't home with him this evening. Peter said Mattie was upset for an hour, but Peter helped him through it. The irony is I told Mattie I was going out and I even said goodbye to him before I left.

I would like to share three e-mails with you that I received today. I thank all of you for your e-mails, they brighten my day and I always appreciate hearing your insights. The first e-mail is from Lesley, one of my sister-in-law's close friends. Lesley wrote, "I continue to start my day reading about your deepest pain and most challenging choices. Today, I am grateful for you! You have single handily taught me how to parent better, be proactive and understand the true gift of loving a child unconditionally. My wish for your family is sleep and full recovery in every sense of the word. Your son has more tenacity that any adult I have ever encountered (other than you)."

The second e-mail is from my good friend, Lorraine. Lorraine wrote, "I hope that God is listening very very closely to every single person blogging, emailing, sending, visiting, thinking, listening, hoping, caring, and wishing that Mattie's Thanksgiving next year will be joyously celebrated knowing Mattie is running around happy, pain free, healthy, and just being a special 7 year old boy, whom we all want to get better NOW." This is my wish too Lorraine!

The third e-mail is from Kathryn, a SSSAS upper school mom. Kathryn wrote, "The last time I was able to get on, I saw that Mattie was in a great deal of pain. I hope that is getting better now. I am praying for him and have lit candles in a church in Perugia, where my son is, and at the Tomb of St. Francis of Assisi in Assisi. I was also able to get a Mass said for him at that church in Assisi. I will bring you back the card. I wish I had better access to know how you all are doing but please know I am thinking of you. I have a little memento of St. Francis for Mattie. Please take the best of care. I continue to be in awe of your strength and courage. My college age son is also praying for Mattie. He was so very sorry to hear of all he is going through. I send a beacon of light to you from Florence where I am sure to light another candle for Mattie and you all. Please know, as I am sure you do on this Thanksgiving holiday, that you are not alone. We all are here for you in any way possible."

On the electronic front, we want to thank Emily W., Karen, and Brian Boru for all the wonderful e-cards! As we head into the weekend, our chemo decision weighs heavier on us. I can't believe how fast a week at home goes and the simple fact that we return to the hospital on monday for 6 days of chemo!

Happy Thanksgiving!

Thursday, November 27, 2008

To all our readers, we want to extend warm and loving wishes to you and your family at Thanksgiving! We hope you had a wonderful day with friends and family enjoying laughter, conversation, and good food. We certainly have had our share of hardship this year, but despite this, we are grateful that Mattie's cancer was diagnosed, that he is in treatment, and thanks to Bob is currently cancer free. We want to especially acknowledge Ann Henshaw (our Team Mattie coordinator) and Alison McSlarrow (our Team Mattie fund and communications manager) for their constant support and tireless energy. These are remarkable and selfless women! We are especially thankful to the wonderful community of Mattie supporters that are out there. As we reflect on what we are grateful for this year, we definitely are grateful to all of you.

We want to thank the Peterson family who graciously offered to cook Thanksgiving dinner for us today. However, I told Karen Peterson that I wanted to try to cook myself. I haven't really cooked since August, and I wanted to try to normalize the day for all of us. If that is at all possible. My joke with Karen was I wondered if I remembered how to even use the appliances in my kitchen or boil water. I rose to the occasion though, I guess it is like riding a bike. You never forget your cooking skills. I want to thank my parents who bought all of our groceries, cleaned the turkey, and started cooking our potato recipe. I couldn't have done a dinner tonight without their help!

Peter tells me Mattie had an awful night of sleep on wednesday. Mattie was up on the hour waking up with terrible dreams. I remember these times from the first surgery. This is how Mattie's body deals with the pain medication and perhaps the whole horrible ordeal. I have decided to take over night duty tonight. Peter needs and deserves a major break. When Mattie woke up this morning, we turned on the TV and watched the Macy's Thanksgiving Day parade. In the past, Peter and I were normally so busy that we never watched the parade. But today, we all stayed in once place and enjoyed the floats and marching bands. I brought out many of the dishes I was preparing for the day, out to the living room, and set up prep areas there, so that Mattie could see that I was with him and could take part in the cooking process. He was VERY demanding all day, he wanted Peter and I near him at all times. It was thoroughly exhausting, and it made it very difficult to cook and be in the kitchen. We did enjoy the parade, and our favorite float was with Kermit the Frog, featuring a song, "I Believe!" Seemed very inspiring and meaningful for the season and for us personally.

I tried to make today festive and got out my favorite turkey plates to inspire Mattie to come and eat at the table. I attached a picture of our table. However, it wasn't the Thanksgiving we were

hoping for. Mattie refused to come to the table, wouldn't eat any of the food, and was in a grumpy mood. Mattie had requested certain foods today, and I made all of them. Even his favorite, sweet potato souffle with marshmellows. But nothing really interested him. He was just mad, and the only way Peter, my parents, and I could have dinner, was with Peter sitting on the couch next to Mattie. It seemed very disjointed, and what drives me absolutely crazy is that Mattie gets snappy and doesn't like hearing noise or people talking. He prefers silence! In many ways our home is becoming prison like. We are praying that as soon as Mattie gets some more independence back physically, a lot of the emotional outbursts, the anger, and anxieties will lighten up. But until that time, the question becomes how do we manage all of these changes in Mattie?

Mattie's occupational therapist, Kathie, is coming over tomorrow, and our nurse Sandra is coming back. Hopefully that interaction will go better since Peter will be home, and there will be two of us to help Mattie through the visit. We end tonight with this quote. Happy Thanksgiving!

"Do not get tired of doing what is good. Don't get discouraged and give up, For we will reap a harvest of blessing at the appropriate time." ~ Galatians 6:9

Wednesday, November 26, 2008

Wednesday, November 26, 2008



Quote of the day (Thanks Grace!): "Never give in, never give in, never; never; never; never - in nothing, great or small, large or petty - never give in except to convictions of honor and good sense." ~ Winston Churchill



We had an interesting night of sleep on tuesday. Mattie woke up screaming at 1am from a bad dream. He was screaming so loudly, I could hear it from upstairs with the bedroom door closed. Peter has been taking night duty since we got home from the hospital, but I wonder how long he can maintain this schedule while working full time? But I digress. So I jumped up at 1am, and went down to see what was the matter. Mattie awoke disoriented a bit and swore there were people around him trying to do things to him. I can only imagine who these folks are in his dreams! If this were a jeopardy category item, we would all know the question was is Mattie dreaming about doctors and nurses?!! It is always fascinating to see how the brain processes what we are dealing with in our lives while we sleep. In any case, once Mattie became more alert and realized no one else was around him except us and Patches, he went back to sleep. But at 3am, there was a major accident on Route 66 right outside our window. It is alarming to be awoken to tires skidding and then a smashing sound. In addition, the crash sent the car's horn off and it wouldn't stop. Things started to get under control on the car front once Peter called 911!


Mattie slept in this morning and did not wake up until 10am. At 10am, he wanted to get out of bed and be transferred to his chair. I got him some fresh clothes and also wanted to wash him up a bit and brush his teeth. Mattie has become very jumpy as it comes to being touched. He refuses to have a washcloth touch him, and he doesn't like the idea of a toothbrush in his mouth. I explained to him the importance of doing this, and attempted to have him direct the cleaning process. But that did not work. I know that there could be some manipulation on Mattie's part about this issue, but prior to developing cancer, Mattie always liked to be clean. The apple doesn't fall far from the tree. Now a simple touch causes panic, pain, and a lot of tears. Mattie eventually got dressed and I assisted him as he moved from the bed to the chair. But basically he is doing all the hard work now himself. He can stand and shuffles his feet.



My mom came over this morning, and we all looked at Karen's turkeys together. They are amazing works of art, and we still haven't seen all of them yet. Examining the turkeys was a great ice breaker for Mattie and he was engaged in what he was seeing until there was a knock at the door. My mom answered the door, and it was Sandra, our in home nurse. She had come back today because she needed to examine Mattie's tail bone ulcer and also wanted to put a bandage on it, since it is getting larger. Mattie took one look at Sandra and went into instantaneous panic. Mattie kept telling Sandra to get out. He was screaming, but not just your usual yelling and tantrum, this was a yelling with total fear in his eyes. It was very hard to remain calm through this 40 minute ordeal, but I did. I tried to convince Mattie for 30 minutes that Sandra just had to look at his back sore, that she wasn't going to touch it. Mattie wouldn't hear of it. He attempted to kick Sandra away. Sandra told me she couldn't leave without physically seeing the sore, despite the fact that I have pictures of the sore. I take pictures everyday for Dr. Synder. In any case, she said if he did not comply, we would have to physically pick him up from the wheelchair and put him in bed on his side so she could examine the sore. I did not want this to happen and begged Mattie to simply cooperate. But he did not. So the next minute, before he knew it Sandra and I picked him up from the chair and put him on the bed and I held him down so he could be examined. He was downright hysterical, and in a way, I felt like I was the villian, stripping him of his rights. He told us no, and yet we did it. It may sound like my interpretation is too harsh. But once this was all over, Mattie told me he hated me and couldn't trust me. He told me to stay far away from him, and I had to walk out of the apartment for a bit. When I walked out, I took Sandra with me. I told her that I would never do this again. I can't afford to be the "bad" person. Today I betrayed Mattie's trust, and I won't be put into that position again. Sandra understood, but then Sandra told me she is worried about me because Mattie's emotional outbursts are huge and hard to handle. She admitted to me, that when I told her on the phone that you have to approach Mattie a certain way, and that there would be no way she could take his bandages off, she told me she thought I was being overprotective, or in her words a "wuss." But after what she observed she commended me on my patience, and even keel. She told me I remained firm, but loving. It isn't easy to do when your child is down right hysterical and at times irrational. She told me she was going to call Mattie's doctor and recommend he be placed on anti-anxiety medication. I told her I could appreciate why she felt this way, but that I would need to think about this and I have throughout the day. Needless to say, I was worn out by 1pm. The day could have been over for us at that point, and I would have be okay with that.



After Sandra left, I came in and apologized to Mattie. I told him I could imagine that he was very upset with me, and that I assured him if he tells me he is afraid to do something in the future, I would listen to him, and that I wouldn't be helping a nurse pin him down to a bed. He absorbed everything I said, and calmed down. We both took a deep breath and then Mattie said he felt like having waffles. I couldn't deny that request, so out came the waffle maker. We had a peaceful hour or two, and then Peter came home so that I could go to the dentist. Peter walked in with two packages. One package was huge, Mattie is always intrigued with large boxes. When we opened the box out popped four helium balloons, one with Scooby Doo on it. Mattie's eyes grew larger and he just loved the balloons. The balloons were from Team Mattie. Thanks Team Mattie, you have no idea how needed these balloons were today! Thank you for welcoming us home. The second box was a beautiful fruit basket from Carla, my former clinical supervisor and now friend. Thank you Carla for the Thanksgiving day wishes.



I cancelled my dentist appointment three times already and I decided to attempt to go today. When I got to the office, I told the hygienist and the dentist what I was contending with. Through my conversation I learned about my hygienist's husband's near death experience and I also learned my dentist is dealing with bone marrow cancer. One thing I observe is once others hear our family is dealing with cancer, most people are willing to confide and share things with us that maybe they wouldn't have before. It is almost like others do not have to put up pretenses or walls anymore because we are already seeing the worst life has to offer and we don't want to be judged and therefore wouldn't judge someone else. In many cases I am seeing the depths and fullness of people like I never have before. While at the dentist office, I received a phone call from Catherine, our nurse case manager. Catherine is working on getting Mattie a better mattress at home to prevent more sores from developing. In addition, we talked about anti-anxiety medication. Catherine received a phone call from Sandra today, and Catherine and Dr. Synder wanted to know how I wanted to proceed. They know my hesitation to add any more drugs into Mattie's system. I told them I would consider anti-anxiety medication on an as needed basis, but I don't feel he has anxiety per se. His anxiety is so situational, almost like a phobia. Caused by the fear of others about to touch him or enter his space. His lack of total control over his space and environment. Frankly I think any of us would be anxious under such conditions. I remember always telling my students that under the right circumstances anyone can develop a diagnosable mental illness. I am seeing this being played out right before my eyes.



While I was at the dentist, Dan (Mattie's in home PT) came to have a session with Mattie. Mattie's initial visit with Dan did not go well, because Mattie wasn't cooperating or even listening. But Dan and Peter worked hard with Mattie today. Mattie bought into the process. Dan used a very effective reward system where Mattie got to pick out baseball cards if he successfully did something. Dan got Mattie up and walking a few steps today. He got Mattie's right arm working and his leg kicking. I am just sorry I missed it, but I fully admit there are times having Peter around versus me inspires Mattie to do certain things. PT is one of them! Dan is planning on coming back on sunday, but I am very pleased to hear of the progress they made together. Dan has me laughing, he can't get over how we know Katie P., Kristin E. (two excellent physical therapists who Dan happens to know and they are both invested in Mattie's PT recovery) and Bob Henshaw all from RCC. He keeps saying, "this must be some preschool."
I agree, it is some preschool. I am so thankful that such a place like RCC exists in the world and that we were fortunate to be a part of it for two years.


This evening Mattie had a yogurt craving. He wanted a particular kind. So I put on my coat and walked to the store to get it. When Mattie was diagnosed with cancer in August, it seems my life stopped. I am frozen in time. Even though I literally know it is November, to me we are still living in August. I mention this because when I went outside today and entered the grocery store (another thing I haven't done in ages) I heard the song, "O Christmas Tree." I was taken aback. My body is telling me it is cold outside, but my head is saying it is summer time. I then noticed Christmas lights popping up in places around our complex. I just stopped and thought where did the last three months of our lives go? This is more of a rhetorical question, because we all know the answer.



I received a lovely e-mail today from Grace (a friend and a RCC mom) that I wanted to share it with you. Grace wrote, "It must be so difficult to see Mattie struggling and frustrated. But never doubt your decisions. Between your intelligence and incredible research, you should have no doubt that you did the right thing in having Mattie undergo the four surgeries. As I said before, you haven't made a wrong move yet, and you've had many, many decisions to make along this road. That's some track record. As Lyndon Johnson said, "Yesterday is not ours to recover, but tomorrow is ours to win or lose." In other words, don't dwell on whether you made the right decisions up to this point, know that you did, and now concentrate on figuring out the best chemo concoction possible to stomp the living he_ _ out of those bugs. (I'm not one to swear either, but sometimes the situation warrants it!) And someone else once said " The best way to predict the future is to invent it." And you are doing just that. Bravo once again to the best parents on the planet. If your mind wanders back to the question of quality of life and uncertain future, think of it this way, how could you not have done the surgeries? Imagine how you would feel not giving Mattie a fighting chance? As Emma's mom so wisely noted, the fact that Mattie has the energy to be defiant is a great sign. Mattie is so strong. He is a fighter. (Try to remember that next time he's yelling at you in the wee hours of the morning; it's a good thing :-) If anyone has the chance to beat this thing, Mattie the conquerer does. How could you not give him that chance? So what if you can't find studies that indicate a better prognosis. Studies schmuties. There is always a first...the first successful heart transplant, test tube baby, etc. People scoffed that those things would ever be possible. But modern medicine is an incredible thing, and it's something that you always have on your side. Remember Lorenzo's oil? The parents wouldn't give up even after being told there was no cure for their child. They went out and found one. Now, I'm not suggesting you get out the test tubes and start mixing (although Mark does have a degree in molecular biology and may be able to help you out:-) But you get the picture. Most parents don't have the patience, fortitude, and indefatigable energy that you do, which gives Mattie a huge advantage. Hmmmm. I wonder where Mattie gets his strength and determination? Your family is a winning team if I ever heard one. I was just talking with Dr. Lischwe (Grace and I share a pediatrician too!) the other day and she was sharing a story she recently read about the first person to receive a pace maker. Despite the fact that no one ever had success before, the man in his forties willingly submitted to trial after trial of pace makers. The first pace maker lasted eight short hours. But he was not deterred. He bellied up to the surgical bar and submitted himself to one pacemaker after another. Finally one stuck, and he ended up living well into his eighties. Sure it's difficult now, incredibly difficult, seeing Mattie so immobilized, but just remember that you've passed those enormous hurdles of four surgeries. Phew! And look how well those surgeries went. (Thanks, Super Bob; I think we need to get Dr. Henshaw a super hero cape, don't you?) It's only a little more than a week out, and as more time passes, Mattie will gain more and more strength needed to engage in the things he loves like arts and crafts, then his mood will surely improve. And as you, yourself said, "Mattie breaks the mold." So why shouldn't he break the mold in being the first to kick this nasty disease?"



On the electronic front, we want to thank Susan, Eva K., Eric & Nataliya (author/illustrator of the Flightless Goose), Coach Dave, and Karen for the e-mails and e-cards. As we sign off for the evening, we want to wish you and your families a very Happy Thanksgiving. We are very thankful to have all of you in our lives, and thank God for Team Mattie. I also want to thank Team Mattie for coordinating the development of reminder bands (wrist bands). Ann brought me a shopping bag full of them yesterday. Thank you Carrie and CSI, the bands look wonderful. Peter and I worked hard on crafting the band's message, and I feel it says it all as we approach this miraculous holiday season... "STOMP IT OUT FOR A MATTIE MIRACLE!"

Tuesday, November 25, 2008

Tuesday, November 25, 2008

Message of the day (Thanks Susan S.!): "By believing passionately in something that still does not exist, we create it. The nonexistent is whatever we have not sufficiently desired." Susan said, "So conversely if we don't desire Mattie to be ill, then he has to be on the road to health, right???"

In the spirit of Thanksgiving, my lifetime friend, Karen (who is a math teacher at La Guardia High School or better known as the Fame school in NYC) had her students design some turkeys for Mattie to cheer him up. Some of these turkeys are down right works of art, so fitting of the talent at the school. We have two boxes filled with turkeys, and we are enjoying looking at each one. The students used every medium possible such as paint, paper, feathers, and newspaper in a very creative manner. We are literally surrounded by 100's of turkeys and I wish I could capture all of them on camera. Thank you Karen for this colorful and lovely gift. Peter liked your "wild turkey" gift too!

Before I tell you about our day, I want to let you know that the Karo syrup worked like a charm. At 4am today, Mattie went to the bathroom and felt much better. Needless to say, I am throwing out every laxative I have ever been given. They don't work well, and to me a more natural remedy which has worked for generations is a better way to go. I am taking Karo syrup with me on every hospital visit!

Ann came over today and played with Mattie while Peter and I went to Georgetown University Hospital to discuss the next steps in Mattie's treatment with his doctors. Ann kept Mattie thoroughly engaged and occupied for several hours, since our meeting was over two hours long. Mattie and Ann created a volcano, played with a remote control tank (thanks for that great gift!), and did a host of other science projects like making snow and crystals. Mattie loved his donut and we plan on enjoying the pumpkin loaf. We are blessed to have a friend like Ann. Mattie gets along beautifully with her, and her bag of tricks are always a hit. She is the modern day version of Mary Poppins.

Today's meeting was helpful and yet solemn at the same time. In attendance at the meeting was Dr. Toretsky, Dr. Synder, Denise (our social worker), Catherine (our nurse case manager), and Kathy (our nurse practitioner). Dr. Toretsky did a very thorough job of seeking out consultations from oncologists all over the country and world. Of the main hospitals in the US that were contacted and weighed in on treatment with a written report were NIH, Sloan Kettering, St. Jude's, and MD Anderson. There were others involved as well, that shared their opinions verbally. All these professionals came to a consensus about Mattie's treatment yesterday in the tumor board meeting. The next step in chemo treatment is a hard decision, and as a parent I don't want to ever look back and say that Peter and I did not seek out other medical opinions, that we did not do our homework, and wonder if there were other options out there that we should have considered. As of today, I feel these fears have been put to rest. Which is a gift!

Today we learned about Mattie's pathology results for the other three tumor sites. You will recall that his right arm's percentage of necrosis was 60%. Necrosis means the pathologic death of one of more cells. The percentage of necrosis in primary osteosarcoma, after the patient receives preoperative chemotherapy, is an indicator used to select subsequent chemotherapy post surgery. Any thing less than 90% necrosis is considered a "poor" response to pre-surgery chemotherapy. So we already knew Mattie's right arm was a poor responder. But it wasn't until today did we realize just how complex a case Mattie is. Dr. Toretsky said the research community is lucky if they see one case of multifocal osteosarcoma presented a year in the entire world. In any case, in the sparse literature on multifocal, it reveals that typically the percent necrosis in one tumor, is the percent necrosis that is seen in the other tumor sites as well. So if Mattie followed what the literature says, then his other three tumor sites would also reveal a 60% necrosis level. However, you should be seeing a trend with Mattie by now. He breaks the mold. To my understanding there is no other multifocal case in the world that has presented like Mattie's! We learned that in his left arm and wrist he is considered a "good" responder, with a 95% and 100% necrosis level respectively. However, in Mattie's right leg, there was only 2% necrosis (meaning that at least 98% of the tumor was alive and viable at the time it was removed during surgery). This finding is very disturbing to both us and the doctors. Why? Not only is it a VERY low percentage number, indicating that chemo basically was totally ineffective for this area of Mattie's body, but that if you recall back in August when a biopsy was performed on the leg (five days after chemo), the biopsy revealed that all the tumor cells were dead. We took that as a VERY positive sign, that after only five days of chemo, all the tumor cells were killed in the leg. So how do we go from all dead cells in August, to a 2% level of necrosis in the leg today? Well there are a lot of theories, but one theory is the tumor regenerated and it came back stronger and resistant to the current chemo treatment Mattie was on. So you may be asking yourself, why is all of this relevant and important to know? Isn't Mattie cancer free now, weren't all the tumors removed? The answer is yes. The tumors are out, and Mattie appears to be cancer free now. But Mattie must go back on chemo, because while the tumors were still in his body, most likely pieces of tumor cells broke off and went floating around his body. In fact, if we did not do post-surgery chemo Mattie would definitely died. All the research indicates this! Which is why there is post-surgery chemo now in all osteosarcoma protocols. However, what the 2% level of necrosis tells us is that the current chemo isn't working, and if for some reason parts of this leg tumor did migrate around the body prior to surgery, then do we want to continue to use the current chemo which we know doesn't work on this tumor to eradicate the remaining pieces in the body? Common sense alone says NO WAY!

Peter and I learned that the medical community is recommending that we add two other chemo drugs to Mattie's treatment: Ifosfamide (I) and Etoposide (E). In addition, there is also the potential to add MTPPE, an experimental drug that boosts one's natural immune system, to Mattie's treatment, but this drug's first dosage can only be administered at Sloan Kettering, NY or MD Anderson, TX. After the first administration the remaining dosages can be done at Georgetown. Well this all sounds like a simple decision, doesn't it?! Just add I and E and MTPPE. Well here is the catch. I and E can have potentially nasty and long term side effects such as renal failure, damage to the heart muscle, development of leukemia, damage to brain tissue, and sterility. So I guess as a parent you have to pick your poision. What can you live with? Certainly if we don't attack the cancer aggressively, then Mattie won't make it, but if we do give him these heavy duty chemo drugs, then he may make it through the cancer, but be left with other complicated issues. So Peter and I are pondering this decision and mind you we have to make it quick, because Mattie restarts chemo on monday!

While in the meeting, Peter continued to ask the doctors about other options. It is possible, though I don't like going there, that while Mattie is on this chemo treatment, that other tumors could arise. Actually I guess I am so far in denial, I never even thought of that scenario until Peter brought it up. Now here is the killer, if tumors arise during Mattie's post-surgery chemo treatment, then the doctors feel that there is no known treatment that will cure Mattie of osteosarcoma. Ideally what we are looking for is a complete cure, but Dr. Toretsky explained that Mattie's chances are greater for survival if he can remain tumor free for a year to two years after treatment. After two hours of such a discussion, I can honesty say I felt nothing. I did not feel sad, I did not feel angry, I did not even feel depressed. I was too much in shock to feel anything!

In my heart of hearts I know we need to add I and E to Mattie's treatment to give him a chance at having a life. When we went to Sloan Kettering a few months ago, they recommended not using I and E. Instead they encouraged us to keep that on the back burner to use when Mattie's cancer reoccurs. Georgetown feels like this isn't a viable option. They feel that we shouldn't wait. Because if his cancer comes back it will most likely be more extensive and the window to treat the cancer aggressively would have passed. So with this line of reasoning, how can we not sign a consent form to give Mattie I and E? I don't know but these are the questions that plague me at 11pm when I have a minute to myself.

Mattie and I had a slow afternoon, but I continue to grow concerned regarding his tail bone ulcer, which is looking more red. I learned that our insurance company will not pay completely for in home nursing visits, nor will they cover the use of a nurse's aide. Got to love it on so many levels. Fortunately I am transferring Mattie without a problem, but I hope that Dan, the PT, can get Mattie up and moving some how this week. Mattie needs to be able to shift his body around. My parents came over today to visit Mattie, and he gave them a hard time, as he has done now since the second surgery. However, he was able to verbalize with my mom today that he wants to see my parents, but that he is just angry and he doesn't know why or how to show it. I thought that was such a perceptive comment, and hopefully we will be able to process that some more with him so that he can feel free to safely explore the anger without taking it out on us.

We want to thank the Coker family for an amazing dinner tonight from the Cheesecake Factory. Nothing like meatloaf on a cold day, not to mention all the wonderful cheese cake and chocolate cake. Also I have never seen a macaroni and cheese like the one the Cheesecake Factory made tonight. It was to die for, even Mattie took notice. Unfortunately Mattie is back to his NO eating kick. However, I am sticking in powdered protein in anything that he will eat and drink, in hopes this will help supplement his diet.

On the electronic front, we want to thank Bob Weiman (what a great Jib Jab of Mattie's grandparents square dancing!), Karen, Allen, Susan, and Brian Boru for the wonderful e-cards and e-mails. We also want to thank the Murphy family for the wonderful Thanksgiving day homemade cards!

I end tonight by telling you about a very special gift I received in the mail yesterday. A prayer shawl. It comes from Jim and Julie Bennett in Maine. Mr. and Mrs. Bennett are the parents of my friend Leslie. Leslie was my first college roommate. I wore the shawl all day today! It is a beautiful blue color, and it is so warm and inviting. It was made with a lot of love and the tender and spiritual message it came with was moving. Here is what Julie wrote about the shawl, "I'm part of a shawl knitting ministry at my church. It's a very special mission for me and I wanted you and Mattie to have a shawl. I have said many prayers into the knitting of this shawl. As a crafter I feel great joy in thinking that I may bring you some comfort. As you wrap yourself in the prayer shawl may you feel the presence of those who love you and the warmth of the one that loves you." In times like these, I cling tightly to the shawl and the meaning behind it! I am thankful for such a special gift that took so much time, energy, and effort to create.

Goodnight and thank you for the opportunity to share our day with you today. I know you are all out there reading and listening, and that is of great comfort to us. Walking this path is hard enough, but to do it alone would make it impossible.