Quote of the day: "Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are." ~ Arthur Golden
Mattie fell asleep early on saturday night. He had a full day of activities on saturday thanks to Tanja and Carrie, all that stimulation was very good for him. However, because Mattie is on IV hydration to flush his system of methotrexate, he was up every two hours going to the bathroom. With methotrexate though, it is not just the process of helping Mattie with the bathroom, but every four hours you have to capture urine for collection. The irony is methotrexate is only a four hour infusion, but it takes days to recuperate from it as it passes through Mattie's system.
When Mattie woke up this morning he was in a good mood. He knew that Caroline Eaton, a third grade teacher at SSSAS and his piano teacher, and Leslie Williams, Mattie's kindergarten teacher were coming to visit him. I located childlife's keyboard this morning and brought it into Mattie's room. Now I am hyper sensitive about germs (not a good thing for me, since I consider myself a neat fantatic to begin with), so when the piano came into the room, I wiped down every key and all its parts. There was no way I am taking any chances with anything coming into the room if it has been around the hospital.
Caroline visited today. Usually Caroline works with Mattie at our home, so this was her first time in the PICU. She couldn't get over how small the room was, and she instantly understood how trapped Mattie and I must feel while being isolated during the day. Caroline brought two special treats for Mattie, an ice cream cone clown from Baskin and Robbins and a pumpkin bread loaf. Mattie devoured two big slices of pumpkin bread. It was wonderful to see! Even Miki, Mattie's nurse, was impressed with the fact that Mattie was eating today. Thank you Caroline for these treats and for your generosity of time and support! Caroline and Mattie worked on playing one of his favorite songs, "Oh Christmas Tree." Who says this song can only be played in December?! Mattie had a great time, and also Caroline and Mattie worked on some Mad Libs books she brought. Mattie never did Mad Libs before (you fill in a bunch of words of your choosing in a scripted story), but he generated some very funny stories. Caroline was telling me she felt as if Mattie was actually reading some words. I was thrilled to hear this. Mattie has been so far removed from school, and I must admit I don't have the energy to work on things with him like I used to. Some how in the grand scheme of things in which I am dealing with life and death issues, whether I teach him to read or not hasn't been my top priority. But some how I sense a change in Mattie. I am not sure if it is a surge of energy or a change in attitude, but he wants to learn.
While Caroline was with Mattie, I had the opportunity to talk with Dr. Myers (the Hem/Onc attending doctor on call this weekend). I told him of my disappointment with how this VRE situation has been handled. He did tell me that he has been trying to get down to the bottom of things today, but on a sunday it is challenging. Dr. Myers did page Dr. Morel for me. Dr. Morel is in charge of infectious disease at Georgetown. The irony is I have seen Dr. Morel many times before, but never knew who she was. Dr. Morel spoke with me in the hallway, and I told her that Peter and I are livid. I explained what transpired. She agreed this wasn't acceptable. She explained to me that my issue was with infection control, not infectious disease of the hospital. Infection control oversees the lab procedures at the hospital and then implements how and when patients are put into isolation. Dr. Morel assured me that I would have the opportunity to talk to Dr. Peters, who apparently works in Infection Control and would be responsible for not reporting the results and contacting the PICU in a timely fashion. Wonderful, I can't wait to meet him on monday! However, Peter and I have learned that we must educate ourselves before talking to doctors. So this morning while Mattie was sleeping, I started researching VRE. I found enough to know that I should be concerned. I e-mailed Peter, and he too started searching the Web. So I shared some of my concerns with Dr. Morel, after all, Dr. Morel is the infection expert. I asked her if it was true if VRE could eventually turn into a more serious infection such as sepsis for example, and whether this ultimately could delay Mattie's chemo. She said the probability is low, however, it can happen. She confirmed my fear. However, she told me right now, Mattie is asymptomatic for VRE and therefore it is better not giving him antibiotics. She said that the flora in Mattie's intestinal tract needs time to replace themselves, and once this happens the VRE will disappear on its own. Adding more antibiotics can only do more harm than good at this point because this infection is already resistant to most antibiotics. In addition, I asked her if Mattie got this infection from being on vancomycin or whether he captured this infection from another patient or health care worker. Her feeling was the latter and than the former. But here is the real rub, Mattie had diarrhea only one day last week. If he never had that symptom that ONE day, we would never have flagged him for VRE and he would have been just carrying the infection around without us knowing about it. I say this, because I have no doubt there are probably many people asymptomatic at the hospital, who we do not even know are carrying these infections. Makes you pause. Unfortunately for Mattie though, Dr. Morel feels that he could be in isolation for weeks or months. She says it could take a long time for this bacterial infection to move through his system. Just what I wanted to hear!
After my conversation with Dr. Morel, I called Peter. Peter and I then decided it was time to get Dr. Shad involved. Dr. Shad is the director of the HEM/ONC pediatric practice. Dr. Shad is in Pakistan on business. But she immediately responded to Peter's e-mail and told him to call her. She spoke to him for 15 minutes, and she heard enough and was deeply angered by what was happening to us. We look forward to having Dr. Shad come back to DC and our opportunity to meet with her in person.
Mattie and Caroline had a good time reading me their Mad Libs creations and of course playing "Oh Christmas Tree" for me! Thank you Caroline for coming to the hospital today. About 15 minutes after Caroline left, Leslie Williams arrived. Leslie was Mattie's kindergarten teacher at SSSAS. Leslie is also a GW graduate, and I have told her many a time, that I enjoyed coming into her classroom as much as Mattie did. I had the opportunity to participate actively in Mattie's kindergarten experience, and I miss these special moments. In a way seeing Leslie was a surreal experience today, because it makes me reflect on how different our life is now. She signifies a happier and healthier time in our lives. Though Mattie doesn't see Leslie often, he instantaneously bonded with her. Mattie was always very fond of Leslie, and I had a feeling their connection would help him now get back into the more academic side of his life. Leslie knows Mattie, what he is capable of, and his learning style, which I think is crucial as he starts to reengage with his outside world.
Leslie brought all sorts of books today as well as a wonderful word game with dice and game pieces. Mattie was fully focused and very cooperative with Leslie. It was beautiful to see this, in fact, as Leslie was leaving, Mattie told her he enjoyed his time with her and wanted her to come back soon. He meant it with great sincerity! I was touched by his comments, and being a teacher myself, I know how special it is to have such a special connection with your students. Mattie also did an after school club with Leslie at SSSAS last year. Leslie runs a construction club, where the kids have the opportunity to build things out of found objects like boxes, cups, lids, etc. I joke with Leslie all the time, I think her club inspired Mattie to work with cardboard boxes. This love for building and boxes continues this year at the hospital. All you have to do is ask Linda, Jenny, and Jessie. They will fill you in on their mission to find interesting boxes within the hospital for Mattie. As Leslie was leaving today, he wanted to create a construction club type structure. Fortunately Leslie had lots of building materials in her car. She ran down to her car, and in a few minutes came back with a bag of fun objects that Mattie could put together with his hot glue gun. He was thoroughly thrilled. I snapped a picture of Mattie and Leslie today, to capture this special moment in time.
Peter came to the hospital this afternoon. After he arrived I headed home for a few hours. I needed to get away. I can't shake my migraine headache, but I know it is related to stress and lack of sleep. I came home and slept for 90 minutes and will head back to the hospital shortly. Mattie was proud of his construction project that he made with Leslie's materials. I introduce you to the newest member of our room, "Mr. Submarine."
While I was home, Charlotte and Ellen (Charlotte's mom) came by to visit Mattie. Peter tells me that Mattie was a good friend today. He offered Charlotte a choice of activities and they agreed on watching a Scooby Doo movie, as well as shared cupcakes, cheese sticks, and pumpkin bread together. They had a good time and Charlotte designed a special silk hoop creation for Mattie, which we will hang on our hospital ceiling. Thank you Ellen for bringing Charlotte by and I am sorry I missed your visit. Peter snapped some pictures of Mattie and Charlotte. Check out his big smiles and Charlotte's hoop creation of herself, so Mattie will remember her when she is not around.
We want to thank the Doane family for a wonderful dinner from Clyde's. Mattie is thrilled to have picked out his own dinner, and I am happy to report that Mattie actually ate chicken. WOW! I of course loved the crabcakes! Mattie loves all the legos, and was busy working on one set when I came back to the hospital tonight. However, I am truly touched by your gift to me. I received a lovely pink bag filled with chocolate, my favorite tea (Earl Grey), and a Sandra Bullock movie. This is like the perfect mental health package for me! I clearly see your family reads the blog because you know all my favorites! Thank you for your generosity and support! It means a great deal to us.
In addition to being isolated, Peter and I are faced with another great sadness. There is a little boy Mattie's age, who we have had the opportunity to get to know since we started chemotherapy. This little boy has a different form of cancer, and he has been fighting cancer since he was TWO! The family has tried everything for their son, everything from mainstream therapy to experimental treatments. I learned yesterday that this little boy is dying, and doesn't have much more time with us. I heard that the family was coming in this weekend, and a part of me was dreading this, because I can't even imagine how this family is feeling. Today when Peter entered our room his eyes were blood shot. I asked him what happened, because clearly it looked like going home and getting sleep did not help him. He told me that wasn't it. He told me that he ran into the mom of this little boy, and he told me she was devastated and her situation couldn't help but overpower Peter. I am not sure how I will respond to this mom, because this is our worst nightmare, and when it hits someone you know, who you went through treatment with, it impacts you personally. I will never forget the one time I met this little boy in clinic when he was feeling well, he was full of life and making model magic scultpures for all of us, me included. It doesn't seem fair, just, or normal for a six year old to lose his life. I am not sure God's plan here, but I have to say I don't get it! There is a great deal of pain and suffering happening within the PICU, and it is hard for it not to get to you after a while. For those of you out there praying for us, say a prayer for this little boy and his family. They need your support and good thoughts of strength, peace, and hope.
Mattie's methotrexate blood level is .72 today. As we head into monday, Mattie will get an echocardiogram in preparation for his next round of chemo this coming week. Mattie will also get MTP-PE, and then it is our hope that Mattie will be able to leave the hospital (assuming his methotrexate level is .1 or below). But we will be back on wednesday or thursday for more chemo! Got to wonder if it even makes sense to leave the hospital! The effort to move in and move out of the hospital is so exhausting.
I end tonight with an e-mail I received today from Charlie. As many of you know Charlie is a former student of mine. Charlie writes to me everyday, and I can attest to the powerful connections between teachers and their students. Thanks for your friendship Charlie. Charlie wrote, "It hardly seems possible that eight months have gone since Mattie was diagnosed. Some days it must seem like much less while on others it seems like forever. Illnesses test not just our strength but our connection to reality, how much more so for you and Pete who are so often disconnected from all your normal daily tasks. Many thanks to all the people who have stepped into the breech to make Mattie's isolated stay in the hospital one of the positive ones rather than the negative it could so easily have been. Tanja, Carrie, and Lorraine, all of whom turned learning into fun and made the day a memorable and exciting one for Mattie. I was so glad to see this because I was just imagining how difficult it would be with Mattie in a small space and nothing to productively occupy his time. And as the radio stations say, a "call out" to all those who have found creative ways to get Mattie to eat. Truthfully, I can remember very, very few patients (most of them adults) who managed to stay off of a feeding tube with this length of chemotherapy. I am so glad for everyone's sake that you have been able to avoid this as eating is so much better in both the long and short run. Kudos to you (for your encouragement of Mattie) and all those people who have provided meals and snacks for your family."
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