When Mattie woke up this morning he wasn't in the best of moods. In fact, Kathleen (who some of you will recall made a clay plaque for an art display at the hospital which read, "I wish for a Mattie Miracle") was Mattie's nurse today and she tried her hardest to make Mattie smile. She even tried tickling him. However, she got Mattie to smile by putting on a very serious face and Mattie took one look at her sweet but serious face, and laughed! I took some pictures of this dynamic later on today. In fact, Kathleen joked with Mattie. She said there is absolutely NO smiling in the hospital. In fact, she said if he smiled that meant it was time for Mattie to go home.
Right before he fell asleep, Ann and her son, Michael came by to visit Mattie. Michael was a very good buddy to Mattie today and tried to help him and encourage him in every way. It is so touching to see this unfold naturally, because clearly one of my greatest fears is that kids won't accept Mattie. Michael helped Mattie in physical therapy as well. Anna, Mattie's physical therapist, came by for a session. The therapy goal was to get Mattie to stand and to also put pressure on both feet. Anna came armed with whoopie cushions in hopes that the sound would inspire the energy and focus of a seven year old boy. It certainly did for a while, and Mattie was somewhat engaged, but clearly you could tell Mattie wasn't himself. He became very quiet and was just staring at us. When I asked him what was wrong, he said he was nauseous. But in reality it was probably the start of a MTP reaction.
Left: Anna and Michael cheering Mattie on as he stomped on the whoopie cushions. I found it fascinating how Michael learned the names of Mattie's arms and legs instantaneously, whereas, I still get confused on a good day.
Right: Mattie sleeping while having a MTP reaction. Please note, that Sunshine kept Mattie company throughout the entire process!
As Mattie was falling asleep, we had a lovely visit from Brandon (Mattie's big buddy) and his mom, Toni. Brandon had a clinic appointment, and it was so nice of them to stop by before heading home. Toni gave Mattie some wonderful gifts that I know Mattie will enjoy later tonight when he wakes up! Mattie was falling asleep to ABBA music and even Brandon got into it and was singing. It reminded me of old times, when Mattie was doing physical therapy in the hallways and Brandon came along for moral support. In fact, I don't think I will ever be able to separate ABBA music from our time in the hospital. It seems to have brought such life and fun into the whole treatment process, and Lord knows these fun moments are like snapshots that are engraved in my mind. Thanks Brandon and Toni for visiting.
As Mattie rested for most of the day, I tried to stay busy, but then gave up. I closed my eyes for about 30 minutes, but resting in the PICU isn't easy for me. When I woke up, Grace (a friend and RCC mom) visited and brought us dinner. Thank you Grace for such a lovely and generous dinner. Thank you also for all the wonderful music instruments and gifts you brought Mattie. You are way too kind and thoughtful. I loved the chat.
Tonight, I said goodbye to Kathleen, one of Mattie's HEM/ONC nurses. I have a feeling we will see her again, when Mattie has more chemotherapy, but none the less, the finality of our leaving hit me. On one hand I am happy that we are headed home, and on the other hand I am saddened by it. These nurses have become my friends and family this year. Having moved several times in my life, I also know that once you leave a place, the dynamics of the relationships you once had change. Regardless, I will always have a fond spot in my heart for the nurses in C52. They have taken excellent care of my baby, and for that I am forever grateful!
This evening, Brenna (the amazing PICU nurse who designed the Sponge Bob Lake respiratory exercise) came by to visit Mattie. She told him a neat story (well neat in Mattie's terms) about a house she knows that is infested with cockroaches (not hers of course!), Mattie was glued to this story and thought that was incredibly neat! I am so happy I had a chance to say good bye and thank you to Brenna. She is a special person, who took a personal interest in Mattie, and for that I shall never forget her skills and various acts of kindness.
Before Brenna left for the evening, I was able to snap a picture of her with Melba and Janelle, Mattie's wonderful HEM/ONC nurses tonight. What a special threesome! We also had a visit from Tamra and her daughter, Louise tonight. Tamra has become a friend and is a fellow SSSAS mom. They brought Mattie some wonderful fourth of July gifts, two of which were like Chinese lanterns with the fourth of July theme on them. We used the lanterns tonight to hide Sunshine the snake. When the respiratory therapist came in this evening, and I gave Mattie the flute to play, I held the silk screen lantern in my hand, and while he was blowing notes, slowly the snake emerged from the lantern. The therapist and nurses thought this was actually hysterical and now Mattie is known as the "snake charmer!" Thank you Tamra and Louise for the gifts and lovely visit!
Mattie and I played for quite some time this evening. We worked on the computer, we played with cars, and with Sunshine and a dinosaur, that came out of the Happy Meal Ann brought Mattie today. When Peter arrived at the hospital, Mattie was thrilled to see him. Peter bestowed many wonderful baseball gifts on him. Peter said the Mattie Fundraiser was wonderful tonight and he said it was so touching and empowering to be surrounded by our Mattie supporters. I wish I could have experienced it, but despite not being there, I just want all of you in attendance to know how grateful we are! Peter told me that during the fifth inning, on the National's score board, there was a call out to Team Mattie! How lovely!
Left: Melba, Brenna, and Janelle!
Right: A sign that the Bowers held up in the stands at the National's Stadium tonight!
Left: A picture of Mattie opening up his game day gifts! We are now fully loaded with National's merchandise! Mattie was very happy.
I would like to share a message from my friend, Charlie. Charlie wrote, "Monday was clearly another difficult day. I envision you as a runner doing not a marathon but a triathlon; you have had to deal with so many different things along the way. You do everything you possibly can but there is a limit to both physical and emotional strength. I admire what you do as a parent, caretaker and advocate but it seems that any time you collapse and Mattie is still awake you feel guilty about it. If you were advising someone else who was a caretaker of a child in Mattie's situation you would be much kinder in your evaluation of that person than you are to yourself. You don't rest when Mattie does; you are up and researching or coordinating his care early in the morning while he is still sleeping so it is virtually impossible for you to be alert into the wee hours of the morning. I know all that you do is necessary for Mattie's care and well being. As a result, it is really difficult to find time/space for rest and self care, but the thing you can control is your evaluation of your "performance". Those of us who have a little more objectivity would give you a score of 11 on a scale of 1-10. If you can't do something nice for yourself today, try to give yourself a well deserved compliment and know it is echoed by all of us reading the blog."
I end tonight's posting with the article I wrote for The Advocate (a publication of the American Mental Health Counselors Association). Some of you asked me to post this, and because you asked, here it is. Writing this article was bittersweet for me. Mainly because I worked very hard to be elected to such a National position, and yet when such an opportunity presented itself, life threw me an unexpected tragedy. This article was my last column as President of the Association.
Son’s Cancer Alters My Life; Illuminates How Physical Disease Affects Families
By Victoria A. Sardi, PhD, LPC
AMHCA President, 2008–09
Since this is my last month as AMHCA president, I want to take this opportunity to thank you for entrusting me with the leadership and direction of the association this year. It has been an honor to serve in this role, and I have been truly fortunate to work with such talented board members, committee chairs, members, and of course the AMHCA staff. Together we have delivered many wonderful resources to members, such as connecting regions through an online networking system called Collective X.
When I was elected president for this year, I was motivated, focused, and determined to accomplish certain tasks and goals. However, after our 2008 conference in San Diego, my life changed dramatically, and because of this, I have not been able to achieve my goals. This year has been an eye-opening journey, which has forced me to reprioritize my life and examine what is truly important.
I feel compelled to share my story with you so that as mental health counselors, you may understand the stresses of living with cancer, a family disease. On July 23, 2008, I took my 6-year-old son to the pediatrician because he was complaining of arm pain. I assumed he had either twisted or pulled something in his arm during tennis camp, but an X-ray revealed something much more ominous. Mattie, my son, had a large tumor in his right arm and was diagnosed with osteosarcoma, a type of rare bone cancer. The nightmare did not end there. We learned that Mattie had four tumors in his extremities, and was given the rare diagnosis of multifocal synchronous osteosarcoma. Two of the tumors were in the upper portions of the right and left humerus (the bone that connects the shoulder to the lower arm bones), the third tumor was right near the wrist, and a fourth tumor was just above his knee joint.
Although commonly found in teens and adults, this type of bone cancer is rarely found in six year olds. Mattie’s case is particularly unusual, because most osteosarcoma patients do not present with multiple tumors at one time. Mattie’s doctor told us that one case a year in the entire world like his is a lot. So there is very little research out there to guide us on Mattie’s treatment. In fact, when my husband and I went to Memorial Sloan Kettering in New York to consult with a leading oncologist there, his perspective was that since no children like Mattie have been known to survive, we should opt for palliative care. Needless to say, we were devastated to hear this news. Fortunately, Mattie is being treated at the Lombardi Cancer Center at Georgetown University Hospital, and his doctors embrace our need to fight this horrible disease and support our aggressive approach to treatment.
Most osteosarcomas are treated with a combination of chemotherapy drugs and surgery to remove the tumor and a margin of the healthy tissue around the cancer. On Aug. 7, Mattie began an intense regimen of chemotherapy. His body has been exposed to five very toxic drugs (Doxorubicin, Cisplatin, high-dose Methotrexate, Ifosfamide, and Etopocide) as well as an experimental drug, MTP-PE. Mattie has undergone 10 months of chemotherapy and two major surgeries, where four bones were removed from his body and replaced either with expandable prosthetics or a bone graft.
In addition to fighting cancer, Mattie has also become profoundly disabled from the surgeries. He is still unable to walk or do any activities of daily living without my support. He is unable to attend school this year, and because of his compromised immunity from the chemotherapy, he has had limited play dates. His world has been transformed and so has the world for my husband and myself. I am unable to work outside our home, and instead I am a full-time caregiver, teacher, playmate, and parent to my son, 24 hours a day, seven days a week. Over the last 10 months, Mattie and I spent more days and nights in the hospital than we did in our own home, so much so that our nurses have become an integral part of our family. I have the utmost respect for oncology nurses, and without their support and the support of our communities this would have been a very devastating year.
I tell you this because I want to impress upon you that cancer is not only a physical disease, but also a disease that causes very real and overwhelming mental health issues for the patient and the patient’s family. Mattie has experienced fear, depression, anxiety, and medical PTSD. Certainly these are understandable mental health reactions to the trauma of living in a hospital, losing your freedom to walk and use your arms, having toxic chemicals coursing through your veins, and living through several major surgeries. However, my husband and I have also had to deal with our own emotional and mental health concerns associated with Mattie’s illness. It is hard for us to accept that our healthy son is now so sick, it is hard to see him going through such intensive chemotherapy, and most of all it is hard to imagine our future without Mattie.
Mattie’s prognosis is poor, but despite this, we continue to hope and to remain strong. As our friends tell us all the time, “there has to be someone with multifocal synchronous osteosarcoma who survives, so why can’t it be Mattie?”
Mattie’s last round of chemotherapy was during the week of May 11. However, like other cancers, osteosarcomas can spread beyond the bone into nearby tissues, such as the lungs. Last December, we learned that Mattie has identifiable tumors in his lungs. So this month, on June 15, he is scheduled for his third major surgery, in which a sternotomy will be performed to remove these tumors (or in other words, bone cancer that has metastasized to the lung).
To keep our family and friends updated on Mattie’s treatment, my husband designed a blog site, which is now copyrighted through the Library of Congress. Each night I write about our day together. Since October, we have had more than 64,000 visits to our website, and it is through the blog that we continue to educate others about osteosarcoma and the impact it has on a child and his family.
In addition, because of our daily stories reported on the blog, we have seen something beautiful unfold. These stories and writings have somehow connected our multiple communities, and we have seen what wonderful things can arise when people work together as a united force. Our communities came together on May 9, and hosted an Osteosarcoma Walk in Mattie’s honor. More than 500 people attended this walk and it was a very successful fundraising event. I am happy to report that the counseling community was well represented at the Walk, and we were fortunate to have American Counseling Association Executive Director Richard Yep and American School Counselor Association Executive Director Richard Wong, EdD, in attendance.
I am proud to be a mental health counselor, and I have used my skills in ways this year that were once unimaginable to me. I think that my training and education has not only helped me this year, but has served my son well. I have become a strong advocate for Mattie’s medical care, and I have used my skills to challenge doctors, hospital administrators, and the healthcare process. I have also tried my best in this process to help other family members traverse this cancer journey. If you would like to learn more about Mattie and my family’s daily battle with Osteosarcoma, I invite you to our blog: http://www.mattiebear.blogspot.com/.
Thank you again for the privilege of serving as your president this year, and a special thanks to those of whom have supported me with calls, emails, notes and visits this year.