MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 SUCCESS!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

February 14, 2009

Happy Valentine's Day!

Saturday, February 14, 2009

Quote of the day: "We are so often caught up in our destination that we forget to appreciate the journey, especially the goodness of the people we meet on the way. Appreciation is a wonderful feeling, don't overlook it." ~ unknown


Mattie had a decent night of sleep on friday. Because Mattie is on all sorts of fluids, Peter and I were up and down all night helping Mattie go to the bathroom. Peter and I are having a competition with each other to see whose eyes could look redder from being so tired. I think Peter wins, but my secret is Visine. Mattie woke up in a very grumpy mood. He was edgy and teary. Thankfully Tricia was our nurse and she knows how to handle Mattie beautifully. Tricia and I discussed the fact that Mattie has been off his depression medication for three days because he has for the most part refused to take things orally. Though he takes this medicine at night, we felt it was important to get it back in his system, therefore Peter administered it to him this morning. Prior to this I had been wondering whether Mattie still needed to take Celexa. However, being off this medication for three days, I have seen the consequences. Without it, he gets edgy, teary, very scared and jumpy.


This morning Peter had some chores to run, and I played with Mattie for several hours. Mattie was in a mood today and at first he did not know what he wanted to do. He wanted to go to the playroom, but I told him it was closed over the weekend. We finally decided to paint his wonderful cardboard plane. We painted it together, and we had fun doing this. Soon after it was painted, Dr. Gonzales came in to examine Mattie. Dr. Gonzales knows how to relate to Mattie and always asks and admires his projects. That grabs his attention. So she looked at the plane and the cockroach beach front property. It appears that Mattie's mucositis issue is doing better. In fact, he did not need morphine all day today. Thank God! Hearing him scream in pain was a total killer. Dr. Gonzales feels that Mattie has a mild case, based on yesterday's screaming, I would love to see what a bad case looks like! Dr. Gonzales let me know that Mattie's Absolute Neutrophil Count is still zero and most likely will need more blood transfusions tomorrow. So we shall be in the hospital several more days.


We had the wonderful opportunity to be visited by Coach Dave today. Coach Dave is the head football coach at Mattie's school, and he is a major Mattie supporter. Dave brought Mattie a Valentine's day gift. I thought that was so generous and thoughtful. It made Mattie feel good that he was thought about today. Mattie loves the bird book and the gigantic growing lizard is already soaking in water and is expanding on the floor in our room! The nurses get a kick out of Mattie, because there is always something growing or going on in Mattie's room. Thank you Dave for visiting today and for all the support.


Our surprise this morning was that Brandon (Mattie's big buddy) was transferred next door to us last night. It is lovely to have Brandon next to us, and unfortunately Brandon is still in a lot of pain from his appendectomy. Brandon and his dad visited with Mattie this afternoon! Brandon is such a lovely teenager, and we miss seeing him regularly now.


When Peter got back to the hospital this afternoon, I left for a few hours and came home to rest. When I got home I called my mom. Isn't it funny now matter how old we are, if something is bothering you, you call your mom? Which is what I did. I was ranting and raving to her about a whole bunch of things. She always helps to put things into perspective no matter the geographical distance. I felt better afterwards, and then took a nap. I headed back to the hospital at 5:30pm and got to see the lego creation Peter and Mattie created. Peter gave Mattie a special Valentine's day present today. Mattie has wanted a lego pirate ships for months now. He finally got it today. I took a picture of the finished product and Mattie basically gave me a tour of the whole ship and its parts!

At 6pm today, Kathie (Mattie's occupational therapist) came to visit Mattie. Kathie offered to watch Mattie while Peter and I went out for dinner for Valentine's day. Everyone should be lucky enough to have an occupational therapist like Kathie in their lives. Because of Mattie's delicate state, Peter and I ate on Georgetown's campus. As Peter and I finished eating, Kathie called me. Mattie was crying hysterically and was calling out for me. So Peter and I came back quickly. As soon as I sat next to Mattie and hugged him, he quieted down. I realized eariler this week, that I can't stray far from Mattie, and I am happy Peter and I did not venture off campus for dinner. Thank you Kathie for bringing Mattie a wonderful cupcake (which he ate!!!) and for bringing us those wonderful chocolate heartshaped cakes! Very special!

My valentine's day gift was a night at home. Peter couldn't have given me a better gift. Frankly you can keep the expensive gifts, flowers, and chocolate (okay maybe not the chocolate), because a gift from the heart goes a long way with me. I know how tired Peter is, but despite that he always thinks about me. My friend, Denise, sent me this quote today, and I think it says it all: "Where there is great love, there are always miracles." ~ Willa Cather

I received an e-mail from Charlie today. She wrote: "What a day you and Pete had on Friday! And poor Mattie after such a promising start to have this day turn out so badly. Thank goodness for your alertness and the foresight of your nurse. A testament to your position that Mattie needs nurses who are familiar with his situation rather than just anyone who happens to be assigned to the ward. I chose the quote because I am as always impressed by your ability to filter out the unimportant and deal with the critical and still remember to thank the people who respond when needed. As the doctor said, "I am impressed," I think we all are awed by what both you and Pete do on a daily basis. May today be an easier climb."

As I sign off for the day, I am staring at Mattie's beautiful "Mr. Sun" painting. It is simply glorious. It lights up our dining room! This painting speaks HOPE to me, and literally it gives off an incredible feeling. It is a piece of Mattie that I will alway cherish. Mattie's art teacher, Debbie, inspired something within him and she helped him express something that we all need more than anything now, undying hope! I hope you all had a wonderful Valentine's day! Your love and friendship toward our family is cherished!

February 13, 2009

Friday, February 13, 2009

Friday, February 13, 2009



Quote of the day: "To get through the hardest journey we need take only one step at a time, but we must keep on stepping." ~ Chinese Proverb


Today, Peter and I are simply and utterly exhausted. At around 2am, I woke up because I heard Mattie whimpering. He was doing this in his sleep. When I looked at our output chart, I realized Mattie hadn't used the bathroom in over five hours. So I woke him up and asked him if he had to go. He decided that he did, but while he was next to me, I could tell he was hot. Ellen, our wonderful HEM/ONC nurse happened to come into the room around this point, and I told her I thought Mattie was hot. So I took his temperature and low and behold, Mattie was running an 103 degree fever. Ellen mobilized and called the resident on call. We then gave Mattie Tylenol. The issue is Mattie can not seem to shake his fever, he has had it since Wednesday. This is a first for us, because normally with neutropenia Mattie loses his fever after 24 hours. Not this time! So the resident ordered another set of blood cultures on Mattie. Peter and I have had two nights like this in the hospital back to back, and without some consistent sleep, functioning is becoming harder. The Tylenol did help Mattie, and when he woke up this morning he appeared to be fever free.


The day was progressing along well. That should have been a clue, it was the calm before the storm. Dr. Abu-Ghosh came to examine Mattie and asked how the morphine was helping Mattie's mucositis. It is working quite well so far, and she was pleased with his progress. Mattie qualified to get his MTP-PE infusion today, he was scheduled to have it yesterday, but Mattie was too sick and was unable to take any of his oral pre-medications before the MTP administration on Thursday. So the MTP infusion was postponed until 1:30pm today.


Julie came to visit us today. I met Julie at Mattie's preschool and we became good friends. Julie brought me a lovely lunch and two major hits for Mattie. She brought goldfish, which he started to crave last night (mind you I searched the hospital for goldfish, and there were none to be had last night!) and cherry Italian ices. Mattie literally ate a half bag of goldfish today and a half of an ices cup. Julie wanted to give me a break, but Mattie was clingy today and I was unable to leave the room. None the less I appreciated Julie's efforts. Linda visited Mattie while Julie was visiting, and she stayed with Mattie for a while and continued working on designing his cardboard box airplane. While Linda was with Mattie, Julie and I stepped out into the hallway to have lunch. However, even with Linda, Mattie had me come back a couple of times. He has to know where I am at all times! Thanks Julie for a nice lunch and visit!


Linda stayed with Mattie throughout the MTP-PE administration, which he handled beautifully! I had the wonderful opportunity to visit with Brandon and his parents while Linda was with Mattie. It is always nice to reconnect with this special family. Brandon continues to be in a lot of pain from his appendectomy. I could tell Brandon wasn't himself today and he is experiencing a great deal of nausea. So Brandon did not visit for very long today. When I joined Mattie and Linda back in his room, he had 15 more minutes of his MTP infusion. After which, we helped Mattie into his wheelchair, put a mask on him, and brought him to the playroom for his special time! This is the first time in three days he has left the room! Jenny, Jessie, and Denise came up from clinic to share in this special time. While in the playroom Mattie completed his airplane and then designed a special beach scene for his friend the cockroach. We have a LARGE model magic cockroach, and for some reason Mattie thought the roach needed his own beach front property today. Totally gross! I told him when the cockroach is leading a better life than me, I have a problem with this. I took a picture of the plane (which is a smaller version of his Sloan Kettering creation) and the cockroach at the beach.


left: You may notice a clay ball next to the roach. If you look closely the ball has a drawn picture of a roach on it. Mattie thought the roach needed his own personalized ball!



right: Note that the plane is made from found boxes in the hospital. There are boxes of all sizes. He made the propeller for the plane out of thermometer covers and the red part of the propeller came from Mattie's Tylenol syringe today.

















While we were in the playroom, Mattie said he felt cold. So I went back to his room to get him a second blanket. I wasn't gone no more than a couple of minutes. When I got back, Mattie was shivering. Now normally most parents do not panic when they see their child shiver, but since Mattie just had MTP administered that was indeed grounds for alarm. I left the playroom to track down Mattie's nurse. I couldn't find Laura, but I found Miki. When Miki heard what I told her, she literally ran out of the PICU to find Mattie. Mattie was with Jenny and Jessie, and in a bad way. Within minutes Mattie was shutting down. If I was an observer, I probably would have taken the time to be scared, but my main objective was to get Mattie the narcotic, Demerol. How did I know how to treat this? Well Sloan taught me one thing well. I know how to assess for rigors. Why, because after Sloan administered MTP to Mattie the first time, they sent us back to our hotel and within 45 minutes Mattie started shaking like a leaf. Peter and I literally managed Mattie's rigors alone without medical help. Seems unethical to me, but that is for another blog. Any case, today, I recognized the rigors right away. Just so we are on the same page..... Here is some google information on rigors. A rigor is an episode of shaking or exaggerated shivering which can occur with a high fever. Rigors occur because one is effectively shivering in a physiological attempt to increase body temperature. It is an extreme reflex response which occurs for a variety of reasons. It should not be ignored as it is often a marker for significant and sometimes serious infections (most often bacterial). It is important to recognize the patient's description of a rigor, as the episode is unlikely to be witnessed outside a hospital (OKAY, not in our case!!! We have seen it and lived it outside of a hospital setting!), and to be aware of the possible significance of this important symptom.

I wheeled Mattie out of the playroom and followed Miki back to the PICU. With me were two residents, our HEM/ONC resident, Elaina, and a senior PICU resident, Dr. Jung, who I met back in August. Dr. Jung has helped me many a time with Mattie, especially when he experienced allergic reactions to medications. In addition to Elaina, and Dr. Jung, I had the PICU charge nurse talking with me. Needless to say I had a team of people following me to Mattie's room. They were trying to assess what to do with him, because at this point he was also writhing in pain. He was screaming of stomach pain and shaking almost seizure like. At which point, I literally interrupted all of them, and said Mattie needs Demerol. I am sure some people read me as brazen. After all I have no medical degree, but frankly I know this patient better than anyone. Needless to say, within minutes Demerol showed up and Laura started pushing it through Mattie's IV. Mattie kept screaming and was hysterical throughout the entire administration. How Laura maintained her cool was beyond me. Mattie needed Demerol right away, but he kept yelling at Laura to administer it slowly. He kept saying, "slow as a snail." When Mattie gets meds quickly in his central line, he sometimes vomits. Linda also rushed into the room to help us since Jenny paged her. The hero of the day was Laura, our HEM/ONC nurse. Why? Because Laura had the where with all today to pre-order Demerol just in case Mattie had a reaction. I can't STRESS enough how important that was to do. The oncology pharmacy at Georgetown is inept, and extremely slow. If Mattie had this reaction, and the Demerol wasn't on the floor, I can only imagine the chaos that would have unfolded. Laura in my book saved the day. I will now ALWAYS confirm that the staff has Demerol present before a MTP administration. I had just made the assumption before that it would be available if such an episode happened. Never assume! I can't tell you how well the residents and nurses mobilized forces today. It was impressive.

Dr. Abu-Ghosh also came up to assess Mattie. Though we think this was rigors from MTP, she wants to rule out a bacterial infection, which can also produce rigors. So she changed Mattie's antibiotic regimen tonight. Mattie also continues to be running a fever this evening. We can't shake it, and all the blood cultures continue to show up negative. Dr. Abu-Ghosh is alerting the Lombardi Clinic, because she feels in the future, we just can't go home right away after an MTP administration. The residents and Dr. Abu-Ghosh were horrified, because they wondered what would have happened to me if I went home with Mattie after a clinic administration and then Mattie had this episode at home or while driving! So now this is Mattie's second bad reaction to MTP, and I believe this is his 10th overall administration of the drug.

After Mattie received Demerol, he literally passed out and went to sleep in his wheel chair. By this time, I was thoroughly wiped out, and somewhat shaking myself. Dr. Jung, the senior resident came back in to check on Mattie. At which point she said to me, that she is so impressed with me. She says she has seen me under the worst of circumstances, yet I am always calm, collected, and rational. I told her that this is facade, but I realize to some extent I must put up this facade, because Mattie feeds off of me. If I panic, he will escalate in his behavior. I appreciated Dr. Jung's perspective, but it took me a while to calm down today.

I kept Peter informed about this, and when he arrived tonight, he took over, and I left the room and I am in the parent lounge away from noise and distractions. I am doing laundry, typing the blog, and watching the fish in the fish tank. Meg and Laura (Linda's interns) also stopped by before they left for the day. Meg even gave us her cell number and offered to stay with Mattie over the weekend for a few hours to give us a break. I thought that was very thoughtful.

We want to thank the Wendt family tonight for a wonderful dinner. I love the cheesecake factory. Though Betsy got me a tantalizing chocolate cheesecake tonight (which I LOVE!!!), I felt compelled to give it to Laura our nurse. She deserved it because she worked so hard today on Mattie's behalf. I felt good being able to give her this treat. Thank you Betsy for the support. We also want to thank the Barth family for their wonderful gifts to Mattie. They dropped it off today at the hospital. The gift is filled with bug creatures, those that wind up, books, and even a bake a bug set! Mattie couldn't wait to throw me out of the room tonight, so that Mattie and Peter could start learning and creating bugs! A gift right up his alley, you made his Valentine's day. Thank you Virginia and Jon Morgan. I look forward to meeting both of you one day!

I want to end tonight's blog with an e-mail and a song that ran through my head tonight. The e-mail is from Charlie my former student and friend. Charlie wrote, "Talk about a difficult uphill journey. This round seems more a mountain to assault than the usual hill to climb.I do hope the summit is reached soon and that the rest of the way will be downhill. I think we all recognize that there will be obstacles to avoid but if it is at least mostly level or an easier time of it for Mattie we will all be so grateful. You and Pete are doing an amazing job; I don't know where you find the strength for each new detour. Tonight is Shabbos and once again, as the candles are lit, I will pray that light that guides the holiday in each week, bring strength, comfort and healing to Mattie and you."

The song I leave you with is from the movie, Beaches. I remember seeing this movie while I was in college, and there was something that captured my attention in the movie even back then. It is about two best friends and their journey in life together. However, one develops a terminal disease. The song that ran through my head today was Bette Midler's, "I think it is going to rain today." In this Youtube clip, you will see Barbara Hershey researching her disease and realizing her situation is grave. It is moments like this today, that I feel somewhat down, hopeless, out of control, and unable to move forward. For me it rained today inside the PICU.


http://www.youtube.com/watch?v=yxXYXctndCQ

February 12, 2009

Thursday, February 12, 2009

Thursday, February 12, 2009

Quote of the day:

"The Path of Life is not a hike or a race; it is a dance. And, in all dances, there will be a few steps backward. Just remember -- the steps backward are still part of a beautiful dance." ~ Laura Teresa Marquez


Wednesday was a LONG night. Mattie was up and down throughout the night, and at 3:15am, Mattie's nurse encouraged me to give Mattie tylenol. She told me that if his fever continued to rise the doctors would insist he take tylenol. So I decided to be proactive and administer it myself. But that wasn't a pretty picture on 3:15am, especially since Mattie was nauseous, had a high fever, and was irritable. Mattie had a hard time waking up this morning. In fact, he did not wake up fully until 11:30am. He was wiped out and very hot to the touch. Mattie has been running an 101.8 fever all day. However, the bigger issue presented itself immediately. Mattie was in terrible pain! Pretty soon after he woke up, he was screaming with a stomach pain. The nurse had administered him kytril (an anti-emetic) and Zantac (an antacid), but neither were helping him. Mattie was screaming so intensely, and then he demanded I find someone to help him. So I ran outside and caught Dr. Abu-Ghosh, the HEM/ONC attending physician. Dr. Abu-Ghosh assessed the problem without even seeing Mattie. She deduced that he has mucositis. I had heard horrible stories about mucositis from other patients, but since Mattie never experienced it, I had no idea what it looked like.


So I did a quick google search of mucositis and came up with the following: Mucositis is the painful inflammation and ulceration of the mucous membranes lining the mouth, throat, stomach, and intestines, usually as an adverse effect of chemotherapy. Oral and gastrointestinal (GI) mucositis can affect up to 100% of patients undergoing high-dose chemotherapy. Mucosal cells normally have a short life span. The chemotherapy can destroy the cells quickly and they are not replaced right away. There may be raw sores (ulcers) in the mouth and throat. It is painful, can interfere with eating, and may require pain medication for a week or two until the tissues recover. This now explains why Mattie feels like he is starving, yet when he eats, he can't swallow the food. I never put two and two together, I just assumed he was nauseous like all his other post-chemo recovery times. However, today I also observed that his cheeks are swollen like a gopher. I asked Mattie to open his mouth and to me, his mouth looked fine, but then the nurse later showed me this white thread like coating on the sides of his mouth that indicate mucositis. So Mattie has been experiencing terrible pain, and Dr. Abu-Ghosh solved this problem quickly by placing him on morphine every four hours. The morphine is helping tremendously. What a lesson this continues to be for us. The side effects of chemo are enormous! I know when I have had a simple cold sore in my mouth, it is super painful, I can only imagine what this feels like to have such sores lining my entire mouth and stomach. What torture for a six year old to go through. Actually it is a seven month torture, that in reality is the beginning of a lifetime journey of pain.

We were visited by Dr. Synder this morning. Mattie doesn't remember this because he was totally out of it. But Dr. Synder told me how sorry she was to hear that Mattie did not attend the Disney on Ice show. In fact, as I was describing Mattie's level of disappointment, Dr. Synder had tears in her eyes. She is a very empathetic doctor. Dr. Synder also helped us secure phosphorus in his IV fluids so that Mattie wouldn't have to take an oral supplement when he wasn't feeling well.

This afternoon, Ashley, a RCC mom and friend, came to visit us. Ashley was our midday helper and brought me a wonderful lunch and an even more sinful dessert. She brought me 6 amazing cupcakes from Happy Cupcake (a store in Dupont Circle). Ashley and I had the opportunity to chat a bit, since Mattie spent a good chunk of the day wiped out and sleeping. Then Ashley gave me the gift of going outside and getting fresh air and lunch while she watched Mattie for a while. That worked out very well, and when I arrived back, Mattie just awoke. Thank you Ashley for the beautiful handmade valentine's day cards to distribute to nurses. They are creative and a lovely gesture.

Mattie had a play session this afternoon with Jessie. Jessie worked with Mattie on a wood model kit and then started creating a plane made out of boxes. Not unlike the plane he made at Sloan Kettering, but just on a smaller scale. Mattie misses that huge airplane he made while in NY, but there was NO way it would fit in the car. So now he is trying to replicate it! After Jessie left, Linda came by. Mattie has been looking forward to seeing Linda all day. Linda continued to work on the plane structure with Mattie, and then she also gave him some wonderful lego sets (for example, a cobra and a tarantula) to work on tonight. Linda told Mattie that if he is up to it, she wants to give him some private playroom time tomorrow. Because Mattie is SO neutropenic he can't be around other children or really out of his room, but if he is isolated in the playroom he should be okay. Mattie is looking forward to this adventure and possibly seeing Chris, the team leader of the chemistry club at Georgetown on friday.

Mattie also had a visit today from his 'big brother,' Jey, and Meg and Laura, Linda's interns. I do want to give you all an update on Brandon, Mattie's big buddy. Brandon did have his appendix removed at midnight. He is in a ton of pain today, and also had surgery to get his central line removed. It is our hope that he will be tranferred up to the PICU from the other unit he is currently in. I had the opportunity to talk with Toni today, Brandon's mom, and I am happy to hear that he pulled through both surgeries so well.

Mattie has been looking forward to Peter's arrival tonight, because Peter was bringing the vanilla valentine cupcakes he received earlier in the week that were at home. Mattie devoured half a cupcake. It was great to see! Peter and I have been in communication all day about Mattie's condition, and when he walked in tonight, Peter got to see our lego cobra creation, and he received further updates about Mattie from all the nurses. Mattie is headed for a platelet transfusion tonight. So you should be getting a feeling for how devastating ifosfamide and etoposide were for Mattie this time (he has: a high fever, low red blood cell count, low platelets, an ANC [absolute neutrophil count] of zero, and mucositis)!

We had a lovely visit tonight from Jeff Turner. Jeff is the HEM/ONC nurse manager for the PICU. Jeff wanted to come and tell us how much he admires Peter and I. He said he admires Peter because he works full time, and yet is very generous with his time and love for Mattie, and he said I reminded him of his mother, and if he got sick he would want me taking care of him. I view this as a VERY high compliment, because Jeff loved his mom dearly. I am not sure if Jeff realized it, but his visit tonight, right before he left to go home, made us feel very special and appreciated!


We want to thank the Goff Glennon family for a wonderful dinner tonight from the Cheesecake factory! We appreciate all your support today with lunch and dinner! It means a lot to us. I want to end tonight with two e-mails I received. The first one is from Charlie, my former student and now friend. Charlie wrote, "Wednesday was a tough day to read about. Mattie in pain and you knowing that you were going to have to disappoint him and take him back to the hospital. I know we were all hoping this post chemo session would go as one of the previous ones did, with Mattie staying well but unfortunately it was not to be that way this time. I hope that Mattie recovers quickly and is able to participate again with his friends. Acknowledging Mattie's disappointment was absolutely the right thing to do; once again, something that seems small is actually large-the gift of truly being heard, not what is said, but what is in one's heart."

The second e-mail is from Susan. Susan is also a former student of mine and now a friend. Susan sent me two wonderful quotes:
"The flower of kindness will grow. Maybe not now, but it will some day. And in kind that kindness will flow, for kindness grows in this way." ~ Robert Alan

"The good deed you do today, for a brother or sister in need will come back to you some day, for humanity's a circle in deed." ~ Robert Alan

Susan wrote, "I think that all the kindnesses that you do for others, of which you are not even aware of, because it is just the essence of who you are, is coming back to you." Thank you Susan for the high compliment! In difficult times, of which we have many of them now, I reflect on these lovely statements.

February 11, 2009

Wednesday, February 11, 2009

Wednesday, February 11, 2009



Quote of the day: "We are each of us angels, with only one wing. We can only fly by embracing each other." ~ Luciano De Crescenzo



Mattie and I woke up late this morning. He seemed very tired today. I carried him downstairs and was going to make him oatmeal, but he requested homemade waffles instead. So I was happy to grant this request with the notion that he would actually eat something. So out came the waffle maker, flour, and so forth. Mattie ate maybe half a waffle and then complained that his stomach hurt. It appears to me that food doesn't taste right to him now. After breakfast, I administered IV Kytril to Mattie for nausea, and then his G-CSF (which is the white blood cell growth factor). I had wanted Mattie to get changed this morning and out of his pjs but he refused to. In fact, he began to cry with that suggestion. He was very clingy all day (more so than usual), so much so that I wasn't able to take a shower and get dressed until around 2pm.



Mattie and I played with legos, cars, and the board game, Sorry. Mattie actually lost the game today, which is a first. He did not handle losing well. So from there we sat on the couch together and read the special book, Birdscapes. Birdscapes brings the outdoors inside for us. It is a pop-up book with sounds. We can actually hear bird calls on each page, and then identify each bird pictured. Once the book was finished, Mattie literally shut down. He put his head down on the couch and slept for over four hours. When Mattie shuts down and naps, I know something is VERY wrong! Since Mattie was scheduled to see Disney on Ice this evening, I figured resting was a good plan, so that he would have energy later. But a part of me knew the reality of the situation, but I just did not want to accept it. I landed up checking him periodically throughout the day for fevers. In the midst of all of this, I do want to thank our midday helper, Olivia. Thank you Olivia for checking in. It was a slow day today, so I really did not need help, but I so appreciate the offer.


At around 5:30pm, I sat back down near Mattie and this time he did feel hot to me. So I took out every thermometer possible. Since you get a different reading if you take temperatures under the arm, mouth, or ear. Clearly Mattie was burning up and had an 102 degree fever. I immediately called the HEM/ONC on call doctor, and Dr. Abu-Ghosh told me to bring Mattie into the PICU. So at that point, I had to call Peter and start packing. Then I had to break the news to Mattie that he wasn't going to see Disney on Ice with his three friends from SSSAS. We only told Mattie about the show yesterday, even through Jenny (Mattie's art therapist) gave me the tickets last week. We did not want Mattie to get his hopes up, only to be crushed if he got sick. But Mattie was doing well last night, so Peter and I told him. Major mistake! When Mattie heard he was going back to the hospital tonight he went absolutely hysterical. He was crying and kept saying he was "disappointed." He was looking forward to this fun event, and especially seeing his friends. It was the kind of crying that was heartbreaking to listen to. Not whining or complaining, but sheer disppointment that he was sick and couldn't do something that was normal. At first I was agitated by all of this. I frankly did not want to pack up and go to the hospital either, and I was getting stressed out by the fact that I had to put things together quickly to get him to the hospital for IV antibiotics (there is a crucial one hour period of time in which antibiotics need to be administered after the development of a neutropenic fever). But then I stopped what I was doing, and sat next to Mattie. What he needed was someone to validate his disappointment and to know that I heard him and could imagine how he felt. Once I listened, and reflected on how he felt, this dissipated his reaction. I could totally understand how he felt, and the fact that he did not go to the show tonight weighs heavily on Peter and I.

When we got to the hospital, mind you it was 7pm, we bumped into Jey, Mattie's 'big brother.' Jey let us know that Brandon (Mattie's big buddy) was also in the hospital. Brandon is having an appendicitis issue. In fact, Toni, Brandon's mom, called me in Mattie's room to check in on us since Linda told her that Mattie was also admitted. Quite a network of folks here, no?

As Mattie checked into the PICU, I saw Tricia (one of our favorite HEM/ONC nurses). I waved her over, and though she wasn't assigned to Mattie, she helped us check in and get Mattie's blood cultures started. Tricia technically gets off her shift at 7pm, but she worked with us until 8pm. I don't forget moments of kindness like this. Mattie noticed that there were a pile of toys on his bed when he entered the room. Linda struck again, and left him things that really interested him! Linda even wrote a note on Mattie's dry erase board welcoming him back and telling him how sorry she was that he is sick. I literally e-mailed Linda before I left our house, and she mobilized forces before leaving for the day.

Mattie is NOT feeling well tonight. I can always tell because he is lethargic and he is complaining of intense stomach pain. He is now on antibiotics and IV fluids. He needs a blood transfusion tonight since his hemoglobin level is extremely low. Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs. So in essence Mattie is anemic. They are trying to figure out what pre-medications to give Mattie before he receives blood products, since Mattie is known to have allergic reactions to these infusions. They wanted to give him Vistaril tonight as a pre-medication, but I sent up the red flag, since I know there are only TWO vials of this medication in the entire hospital, and we need to conserve this supply for MTP-PE administrations. So the doctors are trying to figure out alternative premedications. As I write the blog tonight, Mattie is resting, but moaning in pain. It is disconcerting to listen to. Even if Mattie loses the fever, we will be here for several days, because they will not allow Mattie to be discharged until his white blood cell count meets a certain level, usually 500. Right now his Absolute Neutrophil (the number of neutrophils present in the blood, and neutrophils are a type of white blood cell that fights against infection) Count is zero.

You may recall we just left the hospital on saturday afternoon. Peter and I can't believe we are back again on one hand, but on the other hand we remember what happened in December when ifosfamide and etoposide were administered, Mattie got very sick three days after infusion. None the less, as Peter says, this is "depressing." When you can't control your life, you are sleep deprived and riding a constant emotional rollercoaster, all of this is sometimes hard to take. If this (cancer) were happening to me, I probably would have cracked up a long time ago, but Peter and I know we have to keep it together to support Mattie. I end tonight with two e-mails I received today.

Charlie, my former student and now friend, wrote, "Once again I am awed by the outpouring of love and support that surrounds your family. That willingness to give, to help, to share time, attention and caring in whatever way it is needed. Ann and Ellen teaming up to take care of both Mattie's needs and yours even though I am not sure you knew exactly what you needed at the time. I can tell that the walk, the lunch and the opportunity to be "off call" temporarily made a huge difference. It was lovely to read Whitney's note too and see that she understood the gift that Mattie gave her with his straightforward comments about missing her. That's the sort of thing many adults tend to brush off, not realizing what a gift we are given when our presence is valued and our absence creates a hole in someone else's space."

The second e-mail came from Rev. Rosemary Beales. SSSAS' lower school chaplain. Rosemary sent us this lovely prayer and wish for us this evening. Thank you Rosemary for your support and for praying for Mattie each week during chapel.

From the New Zealand Prayer Book:
Lord, it is night.
The night is for stillness.
Let us be still in the presence of God.

It is night after a long day.
What has been done has been done.
What has not been done has not been done.
Let it be.

The night is dark.
Let our fears of the darkness of the world and of our own lives rest in you.

The night is quiet.
Let the quietness of your peace enfold us, all dear to us, and all who have no peace.

The night heralds the dawn.
Let us look expectantly to a new day, new joys, new possibilities.

In your name we pray. Amen.

February 10, 2009

Tuesday, February 10, 2009

Tuesday, February 10, 2009

Quote of the day:

"Life just seems so full of connections. Most of the time we don't even pay attention to the depth of life. We only see flat surfaces." ~ Colin Neenan

We received IV kytril last night by courier around 9:30pm. Thank goodness! Peter administered it to Mattie, and by midnight Mattie was hungry. Mattie ate ham, cheese, and owl and pussycat shaped cookies! We were thrilled. Thankfully our in-home nurse (that insurance paid for about two or three times) taught me in the Fall how to administer Kytril. It isn't like you can just put it through his central line. You have to follow the SASH principle/process, which means you flush Mattie's line first with Saline, then you Administer the Kytril, follow it by flushing the line again with Saline, and then lock off the central line by flushing the line with Heparin. Acronyms are VERY helpful to me! I stayed with Mattie last night, but I was feeling ill. I had a stomach pain that wouldn't go away. I had this type of stomach pain one other time in my life, so I knew it was brought about by stress. When they say stress can kill, they aren't kidding. Stress is a funny concept, because we all experience it, but if can be expressed and felt differently. Under intense stress, I may look okay physically, but internally things start shutting down. At 6:30am, I couldn't handle the pain anymore, and got up to take advil. Thankfully I haven't felt the pain since that point.


Mattie was up at 8am. He refused to get dressed today, and I was going to talk with Mattie about this, but I figured this wasn't a battle I wanted to take on. Fortunately for me, Ann was coming over to keep Mattie busy and in the process get his body moving. When Ann arrived, she had her basket full of activites (and delicious homemade spinach dip!) with her, but Mattie wanted to finish a project he started with Ann a while back. They built a volcano together, but Mattie never had the chance to erupt it, and he wanted to wait to do this with Ann. Mattie reminded me today to pull out the volcano and he had me set up a drop cloth for the excitement. Mattie loved it, he just kept pouring more and more baking soda and vinegar into the volcano to get a larger reaction!

Mattie and Ann did all sorts of activities together. They excavated some lizard toy bones from a block of clay, and also worked on valentine's day mailboxes for school. Ann helped Mattie design four boxes, one for each first grade classroom at SSSAS. All the first graders will be making valentine's for Mattie and placing them in the boxes. Mattie decorated these boxes today, and yesterday Mattie created a valentine's day card on the computer, and we forwarded this card to Mary Dressendorfer (SSSAS' director of technology), who will print out copies for every first grader and Ann will distribute them. I can't thank Ann and Mary enough for making this valentine's day card exchange possible. It helps Mattie celebrate this holiday and keep him connected to school. Ann also helped Mattie make valentine's for Peter and I, and they are very special to us. Check out the boxes and valentine's!


In addition to all the fun activites they did together, Ann got Mattie up and moving using his walker. Ann motivated Mattie and with each major move he made, he got to move the cockroach on the cockroach incentive chart. I have been unable to get Mattie to use the walker since we have been released from the hospital, so the fact Ann did this today was amazing. In fact, Mattie continued walking for me during the afternoon, and literally he walked so much, that the roach made it all the way to the finish line of the incentive chart. Mattie in motion........



While Mattie was with Ann, I had the wonderful opportunity to be treated to lunch by Ellen (Charlotte's mom). Ann and Ellen coordinated this beautifully. It was a surprise to me, because I did not realize I was going out to lunch until last night when Ellen e-mailed me. Ellen and I walked to Washington Harbor, and it was lovely to walk, talk, and to see the Potomac River. We had a delightful and calm lunch at Tony and Joe's. This is a day I won't forget anytime soon. It may sound funny, but in a way I have to learn to live again. I am so used to dealing with one medical task after another, that it is sometimes hard for me to let all this go and just be. I appreciate Ellen and Ann trying to help break this cycle today.
When Ellen and I came back to see Mattie, he wasn't pleased with me because I was trying to talk with Ellen and Ann. The focus was being shifted from him to others, and I know he doesn't care for this, but it is a fact of life, people talk to each other! We had an incident like this in the clinic on monday, and I gave him a time out in his wheelchair. But today, this technique did not seem like it was going to work. So Ellen left, which I felt bad about, and I sat down next to Mattie and hugged him. He started crying. I believe part of him knows he is doing the wrong thing, and the other part of him just feels some sense of security having me focus my attention on him. This is the perfect example of why it is challenging to parent a child with cancer. Sure I could have just disciplined him and had him melt down, but frankly this isn't always effective, and like any good parent knows you have to assess the environment, the content, and situation before reacting. After I hugged Mattie and redirected him, he pulled out of this funk.
After Ann left, Mattie continued to walk around and he literally moved the cockroach to the finish line of his incentive chart. With that, Mattie felt he earned a trip to the toy store. Peter and I need to set some ground rules for Mattie, because he can't be going to the toy store after the incentive chart is completed each time. I discussed this with Mattie today, and he said he understood and would work with us on what his prize would be each time the chart is completed. But today I let Mattie visit the toy store. However, that meant he had to get dressed. Unlike this morning, he was motivated to get dressed, and we headed off to the car. I really wasn't in the mood to make this journey and to lift the wheelchair in and out of the car, but I did it.
Mattie came home with a toy and he spent the rest of the afternoon setting it up. It was good exercise for him to use his hands and arms. At around 6pm, we have a visit. Olivia, a SSSAS mom, delivered us a wonderful dinner. I am enjoying the opportunity to get to know Olivia. We talked about our shared religion and how in all reality our spirituality and religion surrounds us in our everyday activities and tasks, and in our homes and our hospital room, not just at church. I know that Ashley (who hosted Mattie's prayer service in the fall) had spoken to me about this as well, and this philosophy really rings true to me this year. I think we are so programmed to think of our religion as confined to the four walls of a church, but in all reality this isn't the case. God is with us wherever we go, and for me right now, home and the hospital are our sacred grounds. Thank you Olivia for the wonderful breaded chicken stuffed with cheese, which I hope you consider submitting to Liza for Mattie's cookbook. We really appreciate the girl scout cookies and the movie, Black Beauty.
Mattie, for the first time in ages, wanted to sit with us at the dinner table. In fact, he even said grace. The same grace he learned in Kindergarten (We thank you Lord for this our food, for rain and sunny weather. We thank you Lord for happy hearts and that we are together). While eating Mattie started to feel nauseous. We moved his chair next to me, and I was able to put some food in his mouth, while Peter told some great stories about when he was a child. Mattie and I loved to hear them, and it distracted Mattie enough so that I got more food into his mouth. Once dinner was over, Mattie for some reason had the desire for blueberry pancakes. Fortunately, thanks to Denise (who delivered us some wonderful fruit a couple of days ago), I had blueberries. So I made homemade pancakes. Mattie ate four pancakes. However, soon there after he was sick to his stomach, and Peter gave Mattie another dosage of Kytril. As I type the blog tonight, Mattie is sitting right next to me, and seems okay.
Mattie has a big night tomorrow. Jenny (one of Mattie's art therapists) gave us several tickets to see Disney on Ice at the Verizon Center. Though Mattie is neutropenic, his doctors are okay with him going assuming he isn't being surrounded by people who are sick. We hadn't told Mattie about this event, because we weren't sure if he would be sick by wednesday, but tonight we told him the news. He is excited about this outting. As I sign off for the evening, I would like to share two e-mails with you. The first e-mail is from Whitney. Whitney is one of Linda's former childlife interns, and Whitney is working with us on mondays now. Whitney wrote, "I just wanted to thank you so much for giving me the opportunity to work with Mattie! Today was an absolute delight to see you guys again and I had so much fun with the both of you. When you went in to speak with the doctor, Mattie and I were hanging out and just talking while we were patiently waiting for Jenny and Jessie to start up that clay spinning wheel that he was so anxious to use! There were a few things that just made me so happy when we were talking. At first he looked up at that painting of a sun with a sad face on the wall. And he was like "Ya know I just really don't like that picture, suns aren't usually sad and I thought this place was supposed to make kids happy ..me and other kids don't want to see a sun with a sad face." So we talked about that for a while and then he looked over at me with such a sincere look and asked "why did you guys (Whitney and Lesley) leave this place? ..we really liked you here." I said "Ya know Mattie, it was not that I wanted to leave here but my internship was complete and there were 2 more interns who had to move in so they could get the wonderful experience that Lesley and I had." And in a confused way he said "oh so you got a job somewhere else?" And I said "well not quite yet, but I am working on that." And then he looked at me again with a very sincere face once again and said "ya know, we really miss you here, I really miss you." On my way home, I kept thinking about what Mattie had said. Many people will tell you that they like you or how much they are going to miss you, not knowing whether they truly mean it or not, but when it is coming from a 6 year old boy who is going through so many other things in his life and he takes the time to sincerely look at you and let you know that he misses you is just the best feeling in the world. Mattie has such a huge support group with neverending love and care, and the fact that he told these things to me as just the "intern" that worked with him for a few short months just means so much to me. You and Peter have raised such a wonderful young boy with such a huge heart and I am so glad to have not only the pleasure of meeting you all but to be asked to come back and work with Mattie one-on-one even after my internship was finished is just such a great honor! I am so excited for the weeks to come to see you guys and I hope I can be somewhat of a help! Thank you so much again Vicki!"

The second e-mail is from Charlie, my former student and now friend. Charlie wrote, "Today's quote struck me. How we go along not paying much attention to what goes on inside of us, just assuming all will function as it should and allowus to work, play and move along as always. Mattie's situation has made me so much more aware of what goes on inside a person, of the need to be nourished physically, spiritually and emotionally for balanced well being and how often I do not pay attention to one or more of those needs. You and Pete do such a good job, along with the Georgetown staff of trying to meet those needs and bring Mattie's system into harmony, I hope that his nausea and eating problems resolve and that area can be balanced as well as the others and he can continue to grow and flourish. I have added this thought to my daily prayers for his well being."

February 9, 2009

Monday, February 9, 2009

Monday, February 9, 2009

Quote of the day: “Health is not valued till sickness comes." ~Thomas Fuller

Mattie had trouble falling asleep on sunday night. He was still wide awake at midnight, but we insisted he had to be in bed. I read him several stories, and then shut the lights. I sat next to him and rubbed his head in hopes that this would relax him. I thought he was falling asleep, but then he started talking. He asked me if he was a cute a baby when he was born. He knows the answer to this question, since I have always told him the story about the day he was born. Mattie was born by c-section, after 26 hours of labor. I shared with him that even my OB told me I had a beautiful baby (I joked with her - c section and all, that she probably says that to all her patients.... she said she did not, and she was serious!), and that I was the first person to touch his toes. Mattie sat in bed last night as I retold the story of the day he was born, but then he asked me a question I wasn't expecting. He asked me if I knew when he was a baby that he would eventually get cancer. I of course said no, and he wanted to know what happened that caused him to get cancer. I told him the truth, which is we have no idea. But then I said to him I know why... I told him because he is just too sweet and the bone bugs knew that they would have a tasty home inside of him. I then went on to explain that the bone bugs met their match inside his body, because the bugs weren't counting on him being so strong. I told him he is doing a super job at zapping out every bone bug. Mattie literally then told me why he is getting chemo now. He said that Dr. Bob removed all the bone bugs' homes, but that there may be a stray bone bug that is floating around his body, and the chemo is going to kill each of these remaining bugs. I was so proud of his level of understanding, and his commitment to the process. He is six and yet is so brave, I have a lot to learn from him.


Last night, Peter was working at our living room table and fell asleep downstairs. I was sleeping in our own room, and of course Mattie was in his bedroom. At 1:30am, I awoke to Mattie screaming. I was sleeping so soundly, so at first it took me a while to get my bearing. But I ran into Mattie's room, and found him out of bed and in a pool of urine. I cleaned him up and the floor. Then I went downstairs and woke Peter up and told him he needed a night in our room so he could get some uninterrupted sleep without jumping up every two to four hours, and I went back into Mattie's room and stayed with him. I was shaken up a bit from all of this, and it took me a little while to get back to sleep, but one thing is for sure, it confirms my feeling that one of us always needs to be near Mattie at night. Especially while he is on IV hydration.


Mattie woke up at 8am this morning and was in a good mood. I carried him downstairs, and made him oatmeal. The ONLY thing he will tolerate to eat. Once he was settled, I started to get ready to bring Mattie to the clinic. Peter helped me this morning with Mattie and he helped us get packed up into the car, which I appreciated since the wheelchair seems to be getting heavier to me these days. Who knows maybe it is lack of sleep, great emotional stress, or sleeping for nights on end in a hospital chair. When we got to the clinic today, we were greeted by Whitney. Whitney is one of Linda's former interns, and she has agreed to work with us on mondays for three hours. Mattie also was greeted by Jenny and Jessie, and they all jumped into a project. Mattie worked on three things today. He continued his work on a box project, he added a beautiful 3-D cloud and sun to the box. Mattie is funny though, because he has about three box projects in various stages of completion at the hospital. The second project Mattie did was on a pottery wheel. This was Mattie's first experience working on a wheel. Mattie created a small bowl that he was proud of. I snapped a picture of him, Jenny, and Whitney working on this project.

Mattie's third project was a mosaic design that he is putting together. It is coming along quite beautifully. While we were working on all these projects, Jenny, Whitney, and I were chatting and helping Mattie at the same time. We were so happy to learn that Jenny got engaged over the weekend. Jenny is a very special person and art therapist, and it makes me happy that she found someone who appreciates her. We all enjoyed hearing about the details of the proposal and hearing about the wedding plans. Mattie was also visited by his 'big brother,' Jey in the clinic. Jey drew a cute teddy bear for Mattie and he wanted Mattie to have it today. I think Mattie inspires Jey to take on these creative projects. Jeff Turner, the HEM/ONC nurse manager also came by the clinic to say hi to Mattie. It is like what I have been writing about, visiting Georgetown is like coming home again.

Mattie received his MTP-PE adminstration in the clinic. The funny part about this, is you may recall that Vistaril is in short supply around Georgetown. Vistaril is the antihistamine that is used to pre-medicate Mattie before MTP-PE. Well there are literally only two vials of this drug at Georgetown, and Dr. Synder made sure that these two vials were secured over the weekend so that Mattie's MTP-PE infusions could happen this week without a hitch. The question becomes what happens next week? The doctors are still working this part out. I spoke with Dr. Synder today about Mattie's very low level of phosphorus. I explained to hear that a whole team of Mattie supporters went out to locate Neutrophos and it isn't to be found. So for now, Dr. Synder is having the phosphorus added to Mattie's IV hydration at night, until we figure all of this out. Mattie is now neutropenic. His absolute neutrophil count (ANC= the number of neutrophils in the blood, and neutrophils are white blood cells that fight infection) is 380, and he is therefore severely neutropenic and is at high risk for developing an infection. A normal count would be 1500 or greater. Dr. Synder feels that Mattie's blood level will continue to drop toward zero this week, and of course if he develops a fever, back in the hospital he will go. In addition, Mattie has lost weight. He is 38.5 pounds. I expressed to Dr. Synder our need for IV Kytril at home. Mattie is so nauseous that he can't eat or drink much of anything. Which isn't going to help stabilize his weight. Dr. Synder understood immediately, and tonight we await our courier to deliver the kytril and the IV fluids with phosphorus in it.

We were at the hospital today from 11am until 3pm. So you are seeing our two weeks "free" is a complete misnomer. We are headed back to the clinic on thursday too. However, as I expressed in my most recent posting, there is something familiar about coming to the hospital, and with Jenny and Jessie around, four hours fly by. We also want to thank Tamra for the wonderful lunch. She spoiled us today. She brought Mattie lots of tempting goodies, such as adorable cookies in the shapes of an owl and a pussycat, and his favorite fresh mozzarella cheese. Thank you Tamra for a wonderful lunch and looking out for us.


On our way out of the hospital, we bumped into Liza (one of our favorite volunteers). Liza was helping out with a patient fund campaign organized by the hospital. Liza gave Mattie a wonderful heart shaped helium balloon before he left. That really brightened his day, because I could tell he was tired when he left the hospital. Parking at Georgetown is a true experience. We couldn't find parking today, so we valet parked. The valet though leaves the lot at 3pm, so literally Mattie and I were wheeling around the parking lot until we found the correct office to pick up our key. It was a lesson in patience, after a full day in the hospital, running around the garage was not what I had in mind. Mattie was a good sport throughout all of this. As soon as I got Mattie in the car and started driving, he fell asleep immediately. When we got home, Peter came down to help us. Peter worked from home today, which was a nice surprise to us. He was on conference calls all morning, and by the time the calls ended, it made no sense to leave for the office, when he could get everything from home.

Mattie was very tired for the rest of the evening. He is also complaining of being sick to his stomach, so the kytril can't arrive soon enough in my book. We want to thank the Bentsen family for a wonderful dinner. The homemade chicken pie was outstanding. I am hoping Tamra will consider adding this recipe to Mattie's recipe book. Tamra also spoiled us with homemade cookies and cupcakes. Thank you for supporting us so generously for lunch and dinner. It made a big difference.

As I type tonight's blog, Peter and Mattie are downstairs building with legos. My life has turned into a large lego block. I think I could build a real home out of legos, that is how many lego bricks we literally have! As we head into tuesday, I will continue to monitor Mattie's progress. As of this evening he looked wiped out and is easily agitated, which is a sign that he could potentially may not be feeling like himself. I end tonight's blog with thoughts sent to me from Charlie, a former student and now friend. Charlie wrote, "I've been reading a lot of comments about Mattie eating or not eating in the blog. It has to be terribly difficult for you as a mother when you know how critical it is to recovery to have a balanced diet and Mattie refuses to eat anything. I am sure it feels like a rejection of love and concern; however, it really isn't. In this case it is a combination of Mattie trying to maintain some control over his environment and his body and a natural reaction to cancer drugs that both suppress hunger and induce nausea. The question is how to get him to take in what he needs without making it the center of attention and even more of a control issue than you already have. What difficult choices for you as parents to make; food is often a battleground, but not normally with as much of a high stakes outcome."

February 8, 2009

Sunday, February 8, 2009

Sunday, February 8, 2009

Quote of the day: "Home is not where you live, but where they understand you." ~ Christian Morganstern

Charlie wrote, "In yesterday's blog I felt a lot of emotions about home; going home versus not going home and things being easier at the hospital than at home. Sometimes the support we get from friends, caretakers, and others is so important that in our hearts we really feel separation and anxiety when leaving them behind. This is even though the place we are headed is one where we've always gone and look to for respite. So it is, I think now for you and Pete. With all you are facing daily, the familiar surroundings of home, as wonderful as they are, lack the essential support of those you've come to rely on. Home is essentially split now between the physical place where you find familiar surroundings (physical home) and the hospital where you have an "emotional" home. No matter which one you are in, part of you needs the other place. This is understandable but difficult and another transition to be managed on multiple levels each time. Mattie too, feels this and it comes through in the blog. I think that a part of you will always feel both positive and negative about the hospital anytime you have to go there in the future."


Mattie made it through the night without getting sick to his stomach, however, food completely disinterests him. This is no surprise considering the intensity of the chemo he had this week. It will take time for him to recover. Peter stayed with Mattie last night and told me that Mattie was up a few times, but by 7am, you just couldn't keep Mattie in bed. Mattie wanted to head downstairs to play. Mattie entertained himself for a bit, and he was very motivated to get dressed and leave the house since he had a playdate with Alex, his preschool buddy. Before we headed out, we made sure Mattie got his first dosage of G-CSF. G-CSF (granulocyte-colony stimulating factor) is an haematopoietic growth factor. It stimulates the bone marrow to produce more white blood cells. Growth factors are special proteins which are produced naturally in the body. They can also be made as a drug. One of the main side effects of chemotherapy drugs is a reduction in the number of white blood cells. This makes your body less able to fight infection. There is a risk that Mattie could develop a serious infection, which might have to be treated in the hospital, which is why G-CSF is given to Mattie to stimulate the bone marrow to produce new white cells more quickly after chemotherapy. This can shorten the period during which he will be at risk of developing a serious infection.

Mattie enjoyed his time with Alex. They did all sorts of creative projects, building, and had lunch together. They made some beautiful clay hearts for Valentine's day. Mattie's preschool teacher, Margaret, dropped off this fun activity for Mattie and Alex to do together. The hearts are lovely! Mattie looks forward to painting the clay. They did spin art as well, and of course Mattie's favorite, Legos. Julie, Alex's mom, told me that Mattie spent some time petting and caring for Sophie, their West Highland White Terrier. I found this interesting, because I think pets are so important and therapeutic for the young and the old. I was so happy to hear about this connection, and this is making my mental wheels turn to find ways to get Mattie to interact more with animal buddies. I think having an animal around could inspire Mattie to get up and walk more! Julie and Rob gave us a beautiful gift today of several hours to ourselves. THANK YOU for being such good friends to both of us!

Peter and I went out to lunch, and sat in a solarium of a local restaurant. We even opened the windows next to where we were sitting. The weather in DC was beautiful again today, and since we are both usually couped up inside, and rarely get fresh air, we really enjoyed this opportunity. You don't realize how much you miss your freedom to walk around and smell fresh air until you can't have it anymore. Today, I had the pleasure of having e-mail and phone communications with Lana and Marilyn (both were teachers of Mattie's from Resurrection Children's Center, his preschool). These ladies are on a mission to help me track down the right phosphorus supplements for Mattie. In fact, Marilyn called me while I was having lunch and we had a delightful conversation. She spoke to her pharmacist personally for us, who is willing to mix up the correct compounds and dosages of phosphorus for Mattie. The phosphorus supplement the hospital wants us to get is no longer being made. Do you see a trend here with us with discontinued medications? First it was Zinecard (the heart protector medicine), then Vistaril (the antihistamine), and now neutrophos which is impossible to get! Marliyn educated me about compound pharmacists, professionals trained to mix drugs to meet the unique needs of a patient. Fascinating! Thank you Marilyn for connecting us with your pharmacist and I appreciate all the efforts Marilyn and Lana put into this today. I will find out from our doctor tomorrow what dosages of phosphorus Mattie actually needs.

Peter and I had a nice lunch together, and of course talked about all sorts of things. We are basically having trouble planning our future and our summer. We have no idea what the summer holds for us, but we feel like we need to go on vacation. It is complicated, because where ever we go, we need to have access to a major medical center, since Mattie will need to receive MTP-PE throughout the summer. Peter and Mattie want to go to the beach, and though I hear what they are saying I have a lot of fears about this. After lunch, Peter and I went for a walk at a nature center in Alexandria. Again, walking around outside, may sound so mundane to many reading this blog, but walking for us now is like a special treat. It is a big adjustment to live life on the outside again, and I equate this in some ways to people living in prison. When you are released (prison or a hospital) there is a big adjustment, because the way you have been living your life in confinement, doesn't equate well to the outside world. Which is why I think for both populations, we want to run back to where we feel safe, understood, and comfortable. Now for me to say this is a huge statement, because I DON'T like hospitals. I don't care for their smells, how they look, the equipment, etc. On our walk today, Peter talked to me about bracing ourselves for the future and when Mattie's cancer will reoccur. I have heard enough from osteosarcoma professionals to know that with multifocal osteosarcoma it is a question of when and not if. I know what Peter is saying is true, but I can honestly say this is not a topic I can think or talk about. So he got the message that he had to change the subject with me. This is a subject matter than pains us both deeply.

When we got back to Alex's house, Mattie was having a great time. He was eager to show me what he created, and I could see that Sophie and Mattie were sitting close to each other on the floor. I had the opportunity to chat with Julie, and Peter with Rob, and then Mattie was getting tired and wanted to head home. When we got home, JP, our neighbor came by to visit and dropped off pasta with shrimp and pizza for Mattie. It is my hope Mattie will eat something. But I also know not to push it! Thanks JP! I spent the evening doing laundry and straightening things up around us. Mattie is watching the movie, Babe, with Peter, but we still have the sunday event of a central line dressing change ahead of us. God give us strength. I am beginning to despise sunday evenings! Before sundays meant the start of a work week, but now sundays have a whole new meaning.

On monday we will head to the Lombardi clinic for a check up and MTP-PE administration. Whitney has agreed to work with us on mondays. Whitney is Linda's former childlife intern. Whitney is a wonderful person and relates well to Mattie. So Whitney will be working three hours for us every monday. Whitney is meeting us at the hospital tomorrow, and I hope this is the start of a productive and consistent relationship for Mattie. I end tonight with a quote Liza M. sent me this week. This quote hits home to me, because I see the message being operationalized each day in myself and in all those who support us. "Good actions give strength to ourselves and inspire good actions in others."