The Mattie Miracle Cancer Foundation celebrates its second anniversary!
We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Childhood Cancers. We help build the awareness of osteosarcoma and childhood cancers, and educate the public and medical professionals about the realities of childhood cancers. We advocate for the psychosocial needs of the children and their families who are fighting this terrible disease. Please visit the website at: http://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!
December 13, 2008
December 12, 2008
Quote of the day (Thanks Charlie!): Charlie wrote, "When I think about what you, Pete, and Mattie have gone through I think it is impossible that so much has happened over so short a time. I hope the journey for recovery runs as swiftly."
Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible. ~ St. Francis of Assisi
This quote today describes our situation perfectly. We have done the necessary (diagnosis, treatment, surgery, etc...) in order to try to achieve what is possible (a cure), however, in the midst of achieving the possible we are definitely doing the impossible. I am not sure this quote would have meant as much to me before Mattie was diagnosed with cancer.
Thursday night was another winner. Mattie was basically up until around 5:30am. He complained of intense stomach pain all night long. He even threw up. So clearly the placebo treatment of saline solution wasn't cutting it. I do think a part of Mattie's stomach issue is related to anxiety, but now that the stomach issue is present, it does need to be treated. So he is now taking a medication for heartburn and acid reflux. If I listed all the medications Mattie is on or has taken, it would be quite a long list. I am grateful that the stomach meds are through his IV. As you have heard me say time and time again, Mattie is not compliant with taking oral medication especially when his stomach bothers him. It would be wonderful if I could sneak medication in his food, but that would mean that Mattie is eating. Mattie basically has no appetite what so ever. When he does eat, the only thing he will tolerate is sticks of cheese, occasionally yogurt, and flavored ices. Not the best diet, but forcing food on him and making him uncomfortable isn't an answer either.
I was e-mailing my friend Karen back and forth today. Karen wanted to know if Mattie was napping during the day, to compensate for not sleeping during the night. When I told her 'no' for the most part, she wanted to know how he functions with no sleep? An excellent question, because I am bearly functioning at all. I was watching a video with Mattie today and literally I was falling asleep sitting upright. Mattie kept kicking me awake, and wanted to know why I was so tired. Funny, isn't it?!
Mattie had a slow start to the day, but as the day unfolded, Mattie started to break through his shell, and he began to play with Linda, Jessie, Jenny, and Whitney. In fact, when Liza came over today to drop off lunch, Mattie even spoke with Liza. Of course Liza enticed him with her delicious pumpkin muffins and a great police hotwheels car. That immediately caught Mattie's attention. I was able to leave the room today and have lunch in the parent lounge with my parents. Mattie was able to separate from me, and he had a ball with all his ladies. They are designing a wonderful Christmas house together out of a cardboard box. But they also did a lot of other wonderful projects, and sticking with the cockroach theme, Mattie made a Christmas cockroach for me today. I am not sure what the deal is with cockroaches, but I have a feeling he loves to see my reaction to the whole idea. Thank you Liza for the special angel lotion and the wonderful homemade soup, salad, muffins, and fudge! Liza and I are on completely different campuses of SSSAS and if it weren't for Mattie's illness we may not of had the opportunity to connect like we do now. These are the gifts that pop up in between a whole lot of sadness.
It was wonderful for a brief period of time today to see the old Mattie resurface. In fact the joke the psychiatrist and I had today, was did we walk into the wrong room. Mattie did not throw anyone out and was smiling and talking. However, as the day wore on, by the late afternoon, the stomach pain arose again, and he retreated back into his protective shell (where no one was allowed in his room and no one could talk in his presence). It is very sad to see this transformation happen right before your eyes, a transformation that one doesn't expect to see in a six year old.
While Mattie was playing with his ladies, I met with Dr. Toretsky. We talked about Mattie's treatment plan for the next month. Mattie is scheduled to go back to the hospital on December 22. We thought Mattie was going to have an infusion of Methotrexate then, but it turns out Dr. Toretsky would like to give Mattie the more powerful chemo drugs first, Doxorubicin and Cisplatin. So on the 22nd, we will check back into the hospital for those drugs. I believe Christmas week will be hard, because these are powerful chemo drugs that most likely will leave Mattie neutropenic by the end of that week. Mattie will be given another CT scan the week of January 12 (to assess the lung lesions), and the current thinking is we will try to go to Sloan Kettering the week of January 5, to get the first administration of MTP-PE.
I asked Dr. Toretsky what the plan will be for Mattie's treatment based on what is found in the second scan. If the lung lesions remain the same or smaller during the second scan, then will we continue with his current treatment. If however, more lesions pop up and/or if the current lesions get larger, then we know that the current treatment is not working and all the chemo drugs he is on will be stopped. Then the next question from there is, then what? I think Dr. Toretsky is looking into the next steps if this is what happens, but today he seemed visibly upset by the fact that Mattie's cancer has spread to his lungs. I told him then he could only imagine how I felt. He also understood that waiting for the results of the first scan was absolute torture, especially in terms of how the results were delivered. So for the second scan he said that Mattie will get scanned at 10am and he will meet with us at 1pm, whether the results are positive or negative. Half my stress with the first scan arose because I knew Dr. Toretsky had called a last minute meeting in which he wanted Peter present for the results.
So needless to say, we have a lot riding on these new chemo drugs and the week of January 12 will not be an easy week. In fact, waiting until then is not easy either. I feel like Mattie's well being and safety is completely out of my hands, and really out of the control of the doctors as well. Only God can determine at this point whether Mattie will remain with us and for how long.
At around 6pm, Peter called me tonight and told me his company's holiday party was this evening. He hadn't told me before, probably because he did not want me to feel bad for not going, but all I could think about was last year's office party. Mattie was running around, happy, and it was really the age of innocence for us. Funny how things can change in a year. When Peter got back from the party though, I decided to pack up and head home for the evening. I need a night's separation from the hospital for my mental sanity and stability! We want to thank the Langford family for a wonderful dinner tonight. The California Pizza kitchen pizzas were delicious along with the chocolate treat!
When I arrived home tonight, I could see my two elves had been busy at work. Today my friends Ellen and Christine came over to my home and helped organize and pack up some of Mattie's toys and things that he has outgrown. That was going to be my project while Mattie was at school this year, but that never happened. In addition, since Mattie's illness he has accumulated some wonderful gifts and presents, but right now our home is brimming from wall to wall with things. Ellen and Christine could sense this was bothering me so they gave up their morning to come to see how they could help me. Believe me they had their work cut out for them. As they know I am very sentimental and I don't like throwing out anything, which of course leads to an accumulation of a lot of things. So they sorted for me today and put together five large boxes of things for us to donate. I need to sift through those boxes soon just to make sure there isn't anything of great sentimental value that I just can't depart with. With Mattie being so ill, I think I cling to certain things more than before. The ironic part, which many of you probably wouldn't guess, is I am a VERY private person. I imagine you most likely wouldn't guess this about me from reading this blog. But prior to Mattie's illness, I was much more reserved about issues, concerns, and feelings with others in my life. Which brings me to today. Under most circumstances I would never have asked anyone to go through my home and reorganize and purge things for me. That just doesn't fit my style. But there is a lot about experiencing cancer that helps to change your perspective. Ellen and Alison say this to me all the time, that people are looking for ways to help us. That helping me makes others feel good, and not to look upon my request as a burden. So I am trying to look at these requests now in this fashion. Any case, thank you Ellen and Christine for tackling a tough job, and hopefully you will continue to work with me on the stages of this clean out project.
I received this lovely e-mail today from Ashley. Many of you now know Ashley, since she led Mattie's prayer service recently. Ashley wrote, "Your blog describing yesterday leaves me without words. But I wanted you to know I read it, absorbed it, and the image of your day yesterday has remained with me today. I am thankful to have been able to step into Mattie's room for a few minutes. Thank you. I also have the image of Mattie's little hand waving to Sam. Oh, my. That brought some tears to my eyes. The wave was gentle and welcoming, such a contrast to the other experiences you have written about. Both experiences are true--the welcoming and the traumatic anxiety with others. It's incredible that both extremes can exist within any human body, especially the body of a little 6 year old."
As I sign off for the evening, I am happy to report that Mattie is fever free. All of his cultures appear negative, meaning he has no known infection that must be treated, and hopefully within the next few days his white blood cell count will rise and we can leave the hospital for a few days. All I know is Mattie's illness has taken a great toll out on Peter and myself. Like I told Dr. Toretsky, I could put up with six more months of this, if I knew that in the end Mattie would be okay. With cancer there are no guarentees and it is hard to plan for tomorrow. This level of uncertainty is hard to come to terms with and I am in no way there yet with accepting that reality.
December 11, 2008
In addition to dealing with the transfusion today, I also learned that Mattie's levels of calcium, phosphorus, sodium, and potassium were low. This was one of the potential side effects of Ifosamide, and therefore Mattie will need to go on supplements for quite some time to regulate out his levels. All fantastic news to a parent who has to do a song and dance for Mattie to take oral medications. There are times during the day when I say to myself, "you got to be kidding me!?" of as my in home nurse would say, "WTF?!" How much more can a person take?! Apparently a lot more, and as Peter reminds me, it most likely will get worse before better. Peter sums up our life now as "a miserable existence." That may sound depressing, but guess what? All of this is depressing, and if we weren't feeling any of this, I would say something was deeply and profoundly wrong with us.
The second e-mail is from Carolyn, an RCC mom and friend. Carolyn wrote, "As I read your blog daily, my constant thought is WTF!!! I also have continued to believe that God never gives us more than we can handle – in fact, it is that thought that has gotten me through several rough patches in my life – but I continue to wonder if God believes that you, Peter and Mattie have herculean strength (physically, emotionally and spiritually). Enough is enough! So I will continue to pray for some respite from your living hell and mercy for you all. Just remember – you are an AMAZING mother and woman! You have done everything right – and don’t let anyone tell you otherwise. A mother’s intuition is far more “knowing” than any doctor, nurse, therapist, technician could ever be."
December 10, 2008
After Mattie received his antibiotics, we were able to take Mattie up to the PICU. Ellen helped me transport Mattie along with a nurse from the clinic. There were just too many Santa packages to take up and I couldn't manage everthing.
December 9, 2008
Quote of the day (thanks Susan S.!): I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~ Mother Teresa
When Susan sent me this quote today, it really hit home for me. I do think that sometimes people are given much more than they can handle. Today was one of those days that made me reflect upon this. Being home as I said before is a mixed blessing. Today Mattie was in a funk. He did not want to do much, did not want to interact with my parents, and needed constant one on one attention. There are times that I do see that Mattie is indeed depressed. Lord knows he has every right to be, but it just makes the days much more painful, much longer, and makes you feel helpless without an end in sight.
This morning I received a lovely e-mail from Ashley. Ashley is a pastor, RCC mom, and friend. Ashley led the prayer service for Mattie last night. She shared with me her impressions of the evening and she even shared her talking points which I will share with all of you later in the blog. I feel she put so much thought and effort into this, that all of you should have access to this meaningful script. In any case, as I was reading Ashley's talking points, the seriousness of Mattie's situation hit me. Not that I don't know this is a life threatening situation, but I guess in order to survive day to day, you deny the inevitable. It is a great coping mechanism, I guarentee you. But today, I couldn't help but reflect on the possibility of Mattie's death. This notion is hard to deal with, it was hard to shake once I got it in my head, and I wonder really how parents can imagine their world without their child in it?! I don't know, I did not come to any conclusions.
Today Mattie and I played trains together on the floor, we did lots of computer time together, read books, played a Scooby Doo game, and even took a short nap together. But the days are long, and when Mattie doesn't sleep until 1am or so, there is simply no down time. On wednesday Mattie has been invited to meet Santa at Georgetown's hospital, but he goes back and forth about whether he wants to do this. So at the moment, I still don't know if we are going, but I do know that Mattie starts physical therapy again tomorrow and friday, and he will have occupational therapy on thursday.
Mattie had two lovely visitors today, Maria and Luz. Both ladies help manage the complex we live at in Washington, DC. They came over today to deliver a life sized teddy bear (which is now on Mattie's bed), a huge get well card signed by many of the complex's staff, and the staff at the complex also pooled money together to make a generous donation to Mattie's fund. What a lovely and meaningful gesture. We have lived in this complex for 14 years, and it is nice to know that we are indeed a part of a caring and compassionate community. Thank you for brightening up our day!
I also received an e-mail today from my colleague and friend, Camille. Camille let me know that the three local counseling associations I have been involved in, are hosting a social and fundraiser on Mattie's behalf on December 21. Thank you DCMHCA, DCCA, and DCSCA for your support during this difficult time!
Mattie did receive several nice gifts in the mail that I also want to mention. Thank you Grandma and Granddad for the remote control car. It is zippy and we had remote control car races today! Also we look forward to using the wire puzzles. Never did that before. We want to thank Grammie's friends from the stroke support group for making a generous donation to the Mattie fund. That was so thoughtful of all of you. Lastly, Mattie received some lovely books from Janet W. We do not know Janet, but she read an article about Mattie in the in Velador, a newsletter for the Caribbean Conservation Corporation (of which Roxana, Mattie's sea turtle is a part of). Thank you Janet for thinking of Mattie!
Lastly, I want to thank Sylvia for a wonderful dinner tonight. Sylvia was a professor and mentor of mine at GW. She has been very helpful to me in tracking down trauma resources for Mattie and in the midst of our dialogue about this she also wanted to get me food of my choice tonight. Thank you for the great food from the Cheesecake Factory! Mattie appreciated the pizza.
I end tonight's blog with the script that Ashley developed for Mattie's prayer service. I am hoping you enjoy reading it as much as I did!
Prayer Service for Mattie Brown - lead by Ashley Goff Glennon
Light the 3 candles
Church of the Resurrection, Resurrection Preschool
Ashley Goff, parent at RCC. Sam was here at RCC with Mattie. Associate Pastor at Presbyterian church in Dupont Circle.
Idea for Prayer Service came up a few weeks ago from Kathy Brown, another parent from RCC who had kids here when Mattie was here at RCC. Kathy is a nurse at GW and as she put it, “believes in the power of prayer.” Asked me if I wanted to be involved and here we are.
This prayer service was created just for those on Team Mattie and Ann Henshaw’s email list. That was intentional b/c we thought Mattie’s situation isn’t getting better or easier and we wanted to build-up this community. Connect with each other, put faces to names, and strengthen this “body” of people to continue on with love and care for the Brown Family. They have a long road ahead and we need to shore ourselves up to be part of that long, painful road. This is our purpose for being here.
This is more than just community building and get to know you. This is about prayer. It’s about connecting with each other for the sake of the Brown family through this ancient, spiritual practice that can tie and bind us together.
Each one of us probably has a different definition of prayer, different experiences, different needs for prayer. We are here because prayer calls us to remember that there is a presence in the universe, in each of us, beyond our understanding yet still empowers us to work through and connect deeply with struggles, heartaches, and life threatening situations such as Mattie’s.
Here because prayer can make a difference. Lots of research being done these days that shows prayer and alternative modalities are helpful, and a creative resource in times of illness. Duke University has an entire center on Spirituality and Health and NIH has done a lot of work on alternative medicines along with GW. Prayer is an essential component to the picture of healing and well-being.
Know prayer is a powerful tool in healing b/c it connects with our core—the energy, the Spirit, the emotions, the illness…prayer gets to the root of who we are and when you are sick or care giving, the root of who you are is very much exposed. Vicki’s blog.
Tonight take advantage of this context of RCC which thrives on interactive and sensory experiences as a way of learning. This prayer service will be interactive and sensory. This won’t be me praying, and you all listening. You will be reflecting and doing tonight, getting at the heart of what Mattie’s illness and his grim prognosis mean to us.
1) Confidentiality: what is shared in the room, stays in the room.
2) Safe space: share, write, reflect what you want and capable of doing.
3) What comes up, comes up. If all of a sudden you find yourself thinking about your Aunt Betty who died of breast cancer two years ago….feel guilty for not focusing on Mattie. Ok. Your story that comes up is an extension of Mattie’s story.
4) Non-judgment: what we hear and witness in this room is not only kept in confidence but not judged. It’s about acceptance. Accepting people’s understanding of prayer, what comes up, how people express themselves, etc.
5) Sharing in groups….don’t have to share. You can just listen. Your choice.
Begin tonight with a guided meditation, meditation on Mattie’s diagnosis and where we are right now. This is to get us centered and focused.
Focus on the lights around the room, close your eyes. Find yourself getting distracted, come back to your breath, your core.
After meditation, time for deep silence. Time to be quiet, still, to go deep, listen to what’s going on with you around Mattie’s illness and caring for Peter and Vicki.
Be in deep silence for 5 minutes or so. Want you to breathe. You are invited to be still, quiet, aware of community, aware of what comes up for you in the silence. In our church we have a song with the words, “be still and know that I am God.”
We aren’t still very often. Don’t get stiff, be relaxed.
Ring the Bell
Take yourself….back to the summer….it’s a DC summer. Hot. Humid. Remember what was on your mind….kids….camps….friends….vacations…..your own family going-ons…your own highs and lows….take yourself back to the summer…..when you received the news….that a 6 year old…Mattie Brown…has bone cancer. Did you hear it…from Vicki….from Peter….from email….a phone call….a friend…..how did you hear the news. Take yourself to that moment of receiving. You heard Mattie has bone cancer and you felt…..what. a pit in your stomach…numbness….tears on your face….deep fear….anger….confusion….what was moving inside of you when you heard the news that Mattie has bone cancer…..
The days moved on and the blog reported the news. Two parents….an emotional train wreck, fearing for their child’s future and well being. Mattie still being Mattie.
The testing begins…the waiting begins…..we wait, we read, we feel….we look at the world around us in a new way, with a new field of vision.
Bad news comes again…Mattie’s cancer is found in other bones. This tiny, 6 year olds body is being ravaged by cancer……those dam cancer cells don’t stop. They have a life and power of their own. The cells create pain enough for morphine. The cells create tears, fears.
The days continue….chemo begins….along with the side effects. We read the blog. We talk. We email. We visit. Community is building.
Mattie’s journey continues…..the journey gets hard, painful, emotional. The news never gets better. Now lesions of the lungs. Mattie is taken to the threshold of pain and emotional well being. Vicki and Peter are taken to the same place. We read. We hear. Side by side, we walk with Mattie, Peter, and Vicki as the trauma and nightmare of the journey unfolds, we are taken to a place within ourselves we don’t want to go. We witness friends endure the greatest challenge of their lives.
But here we are. Together.
Holy One, the one of many names and faces, we cross the threshold of life with you by our side, witnessing your Spirit in the hands, the hearts, the lives of those around us. You hold us together as Mattie finds the strength within to live, as Peter and Vicki fight like hell for their only child. You guard each throbbing wound, reminding us it’s not the wounds that give us life, but the tending of them; it’s not the hurt and pain that makes us whole but the mending of the brokenness that brings us life anew.
In the stillness, with music as our comforter, let us hold Mattie and Vicki and Peter in the light, in the darkness. In the stillness and silence around us, let us be with ourselves. Visit us in the stillness, Holy One. Call us into a deeper dimension of the self, into the sacred wells that exist within us where we can find nourishment for ourselves, Mattie, Peter, and Vicki.
Let us be still and silent.
Gently return yourself to the space and pull yourself out of the silence.
Mandala: Sanskirt words meaning of essence, having, or containing. It’s a spiritual tool to help with focus and concentration. Used in meditation practices, especially in Buddhism.
Mandala is a safe space.
This is your safe space. You’re invited to draw a circle. Mandala is always a circle. color, draw, express yourself in your Mandala. Draw in the circle. This is your safe space to express what came up for you in the stillness.
Somewhere in your mandala, write a word or phrase that came up over and over again. Maybe it was Mattie, maybe someone else’s name, maybe an image, symbol, picture of a safe place, dangerous place. Write that word or phrase in your Mandala and then draw, color around it.
Share in groups. You can share about what came up, what your picture means. Or you can share about the experience of being in silence and reflecting---may give you a little more privacy if not ready to share specifics about what your mandala represents.
Share in groups of 4-5.
What came up…….
Now I want you to write a letter to Vicki and Peter about your word or phrase. Not going to send it. But pretend. Tell them about your word or phrase. Give you a few minutes to write.
Your word/phrase going to shape this next prayer. I will offer some words of prayer, time for you to share out loud or in silence your word or phrase. Don’t worry if you think people won’t get it or it will sound weird or something. When we share these words, connects us because we know what’s behind the word/phrase—came out of our core, deep place within us. Share the word/phrase, get a glimpse of what we are carrying with us as we care for Vicki and Peter and Mattie. Also space in the prayer to name those we know, family, friends, ourselves, who are living with cancer, have died from cancer.
Ancient, Holy One, who tends to all things that are hurting and broken and makes all things new, may we receive with gentleness the task to care for and love Mattie, Vicki and Peter. We gather in this community, surrounded by Light, to face the truth and ugliness of Mattie’s cancer; to name what it means to us, so we can be a stronger force of light and love for the Brown family.
Remind us, Holy One, of the acts of love and kindness that can make a difference: openness of a hand, tenderness of an embrace, spaciousness of a heart, graciousness of a meal served and the offering of a vessel of tea or soup, the sharing of prayers for healing.
You are there, Gracious One, in every act of care—acts of kindness and friendship. You are there in the times of pain, suffering, vomiting, outbursts, the deliverance of chemo.
We pray for Mattie’s team of specialists: Dr. Henshaw, Dr. Snyder, Dr. Gonzalez, Dr. Myers, Dr. Toretsky, Dr. Shad. For the child life specialists like Linda and Whitney. For Mattie’s nurses who handle the chemo with love, the medical techs who administer tests with patience, for Mattie’s psychiatrist who is tending to Mattie’s extreme anxiety, for the facility folks who clean Mattie’s room and make it a home. Bless their hands, their hearts, fill their work with compassionate presence.
We know that Mattie isn’t the only one among us praying and living through cancer. Cancer has touched our lives in ways beyond measure, ravaging the bodies, leaving internal scars, of those we love, quieting the heartbeats of those we’ve known and embraced. Tonight we remember the names, the faces, the lives, the stories of those impacted by this disease. Hear our names, Holy One, of those who have lived and died with cancer:
The journey can leave us speechless, searching for words to express our thoughts and feelings. Tonight, Ancient One, we found some within the deep well within us. We found words that might just express a glimmer of what we are experiencing as we walk this road of cancer with the Browns.
Hear our words, Holy One. Receive our words. Welcome our words. Connect with our words. Let our words build up our community of care. Hear our words offered out loud or silently within.
With names, with words, with silence—let us hold on to these things with persistence, moving us forward, not knowing what life holds next, but being prepared for how life unfolds for Mattie, Vicki and Peter.
May it be so.
Transition a bit. Finish the sentences. More clarification exercises. Remind us that in the midst of this nightmare, we still have power. We don’t have the power to save Mattie from the cancer growing, returning, or at some point, to save his life. But even in the midst of this nightmare, we can still find something to be grateful for.
Helps balance out the ugliness we read and witness from this journey.
Also…finish the sentence about commitment. You may finish the sentence with what you are already doing. That’s ok. Re-commitment.
Finish the sentence….get in same group of four.
Because of my realizations….share out loud.
Hand thing. As feeling the pulse…..
Close eyes. Feel our power and energy pulse.
Take a final moment of stillness. Take a breath. Take in what you’ve realized tonight. Take in what you’ve heard from others.
We stand, surrounded by a presence in the universe, in each of us, beyond our understanding, a presence that empowers us to face life and death for the sake of community and friendship. May we show Mattie that we have been taken hold of by this gentle, powerful, life-giving presence.
May it be so.
December 8, 2008
Quote of the day (Thanks Charlie!): Patience and perseverance have a magical effect before which difficulties disappear and obstacles vanish. ~ John Quincy Adams
Sunday night, Mattie had a good night of sleep, and so did we. Melba, was Mattie's nurse on sunday night. Melba also took care of Mattie's four nights last week. Melba lived through the horrible night where Mattie was up for 2am until 5:30am screaming hysterically. Last night, Melba came over to me to let me know that she has since been praying for Mattie. She was very concerned by his behavior this week. Melba is another example of the incredible nurses that supported us this week. I even had a nurse, Erin, give me a neck massage. What can you say about these fine women, other than thank you for all you do for us!
This morning, I knew we were going to get discharged from the hospital, and I started mobilizing forces. I asked Peter to leave his car at the hospital because with Mattie's wheelchair, I can't fit all the things we have at the hospital in my car. Peter took a taxi to work, and thank goodness he did. Fortunately, my parents drove my car to the hospital and helped me pack up the room. Which for me is a two hour ordeal. Linda also helped us and worked with Mattie on designing his Christmas house that he is building out of a cardboard box. This box is slowly getting transformed into something wonderful. Just an aside, but don't you find it funny how a child loves a cardboard box? To a child a box appears to be the world's best form of entertainment. Mainly because it can be used in any way that the imagination sees fit.
My parents and I did several runs to the cars with stuff from Mattie's hospital room, and then I went up to retrieve Mattie. In the midst of this, my car's battery died, and my mom came running up to the fifth floor to find me. Thankfully Linda called security and my dad found a helpful bystander who was willing to jump start our car. Thank you Linda for helping these folks find the battery in my car. Apparently it is concealed and all the people standing around my car couldn't find it. Linda put them to shame.
When we got home, it was another ordeal of unpacking things and trying to reorganize our lives. Not an easy task. Each time I have to do this, it becomes a little more stressful, and my patience level is slowly disappearing. When I enter our home now, it seems so cluttered. There is no organization and the lack of organization makes me very uneasy. So much so that I landed up screaming all over the house today, and my parents and Mattie just were looking at me. Of course Mattie landed up crying because he doesn't like to hear screaming. Naturally Mattie's crying reset me, and I just said internally to myself, "what ever, so our home is cluttered, there is nothing I can do about it now." That is not the priority.
As I was packing up Mattie's room today, trying to listen to discharge instructions for Mattie's care, and feeling the stress of taking Mattie home, I started to build up a certain amount of anger inside. If one more person told me how wonderful it was that I was going home, I thought I would seriously hit them. Going home is no blessing. It has its complications. First of which is Peter and I are completely on and responsible. Not that I take many breaks in the hospital, but I have a huge support system there. In addition, this week, not only do I have to heparinize Mattie's central lines (which I am used to), but I have to administer GCSF (a white blood cell growth factor) each day through Mattie's central line. I haven't done this in ages. Fortunately I kept the instructions from when the nurse trained me months ago. Then of course I have all of Mattie's medications to manage. No problem! Piece of cake. Sometimes I wonder whether the medical community is! Are they out to lunch?! I do think they are probably well intentioned, but I think many of them haven't walked in my shoes and simply don't have a clue. Because if they had, they wouldn't be wishing me a good time at home. My recommendation is they be forced to spend a week in a PICU under the conditions we live and either have to go through the treatments themselves or observe a loved one receiving them. I think that would be a humbling experience. If they think they were tired from med school and rotations, forget about it. That was nothing compared to the level of fatigue, stress, helplessness, and so forth that we live each and every day. I could go on, but I don't think this ranting and raving is accomplishing much, other than being cathartic. The insensitivity around me sometimes makes me want to scream. Most of the time, I can rationalize what is going on around me, but I can tell you today was the day I thought I was going to snap at someone. When the car's battery died, that almost sent me over the edge, and when the hospital security person came up to me and told me I couldn't park the car by the ER, I literally almost took his head off. What does he think I am doing by the ER? Just hanging out?! Like I have nothing better to do.
Mattie came home and was happy to be here. I got creative today and brought his chairs and table from his bedroom downstairs to our livingroom. He literally got himself up from his wheelchair and spent time today sitting in a chair and doing puzzles with my mom. He watched the movie Cars with my parents and I as well. So his spirits were good, and his mood was SO much better than I have seen in weeks. The power of medication. As I sit and type the blog tonight, Mattie literally got off of his chair and is now sitting on the floor. I am not sure how he managed to bend down to the floor, but there he is playing with his trains. He is using both hands now, and is slowly working on his flexibility. I am encouraging him to walk and take some steps. I think he is feeling more confident in his abilities, and it is my hope we can work on movement this week before he turns neutropenic and we have to head back to the hospital.
We want to thank Kathie for a lovely dinner tonight. We loved the spinach pizza! We also want to thank who ever delivered us dinner last night from the Cheesecake Factory. We weren't expecting that, and I am not sure who ordered it for us, but the pizza was a big hit with Mattie. We want to thank Bob Weiman (SSSAS head of the lower school) for the wonderful magic trick he sent in the mail to Mattie. Bob, you will have to teach this one to us, because I have no idea what to do with it. I am magically challenged. Also a special thank you to Debbie Pollak. Debbie is Mattie's art teacher at SSSAS. Debbie created an amazing book with lovely letters and art work from the first graders to Mattie. The cover of the book is stunning. It has Mr. Sun on the front with all the childrens' names written on the rays of the sun. The first graders wrote such beautiful things to Mattie, such as they wish they could paint like Mattie, or they want to be his friend and play with him, or they want him back to school as soon as possible. It is amazing to see how in just a few short months, these kindergartens have now become first graders and are writing in full sentences. Amazing.
This evening, Ann called me and let me know how lovely the prayer service was for Mattie. I was so touched to hear how many people attended the event, and the spirit and energy that was generated. We thank SSSAS and RCC for their support and attendance. We have only been a SSSAS family for one year, and yet it is very reassuring that SSSAS leadership is so supportive of us. Thank you Joan Holden, Bob Weiman, Susan DeLaurentis, and Leslie Williams! Peter and I especially thank Ashley Goff-Glennon and Kathy Brown from RCC for organizing and creating this empowering evening for all of Team Mattie. For all those who attended the service, a big heartfelt thanks!
Mattie ended his evening with a visit from JJ (our resident Jack Russell Terrier). JJ's owner, JP brought Mattie a gift back from his trip to Spain. Mattie loves his Matador piggy bank and it was funny to watch JJ chase around after Mattie's remote control car. As I sign off for the evening, I am hoping that we all get some rest, that Mattie continues to grow stronger and happier at home, and that for a moment in time we can forget about hospital sounds, scans, and we can leave our fishbowl existence behind for just a few days.
December 7, 2008
And while the medical personnel want to help Mattie the following remains true so you and Pete need to follow your hearts! "There is no friendship, no love, like that of the parent for the child." ~ Henry Ward Beecher
On Saturday evening, we had the delightful company of Liza. Some of you may recall my description of Liza from previous blog postings. Liza is a former professional ballet dancer. You can instantly tell she was a dancer by looking at her, but in addition to this, Liza has a beautiful voice. It is so sweet, and it reminds me of Billie Burke's voice in the Wizard of Oz (Glinda, the good witch). There is a lot of substance to Liza, she is warm, sensitive, caring, and bright. We were happy to hear that she just transferred from her graduate program at Columbia University to a program here at Georgetown. Mattie is very fond of her, and I can see the feelings are mutual. Liza spent several hours with us last night, building legos, chatting, having dinner with us, and helping to brighten Mattie's mood. Liza brought Mattie several gifts such as a wonderful planetarium (which we put batteries into and observed how it lit up the room with star formations), Lightning McQueen sox and tatoos. Our whole family is fond of Liza, after all, how can you not love a person who is so generous with her time and who loves playing with your son and seeing him smile? Below you will see a picture of Mattie and Liza together.