Quote of the day: "Resilient children tend to have parents who are concerned with their children's education, who participate in that education, who direct their children's everyday tasks, and who are aware of their children's interests and goals. Another important characteristic of resilient children is having at least one significant adult in their lives." ~ Linda F. Winfield
I woke up this morning determined to contact my neurologist. My migraines are becoming so intense that it is becoming harder to function. I have suffered with migraine headaches for years now, they come and go, but once they start, they are hard to get rid of. I have learned to work through them, but it is painful. When I saw Alison this week, she suggested I contact my doctor and tell her of my extenuating circumstances. So while Mattie was sleeping this morning, I was racing around packing and on the phone at the same time. I feel the need to tell you this story because I think it speaks volumes about healthcare. So I call the neurologist's office and a staff member answers the phone and quickly puts me on hold. But I was not on hold for a minute or two, try 10 minutes. My phone has a time counter, so I knew for sure. Now if holding on the phone wasn't bad enough, there was this noxious music I had to listen to. In fact, it reminded me of circus music, and it just played over and over again. When the staff member got back on the phone, I told her I couldn't be the only person who couldn't stand hearing this music especially with a headache. So what did she do to me? She put me right back on hold again! At this point, Mattie woke up, and was sitting down right next to me listening and watching the whole process. Mattie did not care for the holding music either. When the staff member came back on the line, I removed myself from Mattie and then told her about my migraines and my circumstances with Mattie. She did not ask how Mattie was doing nor did she say she was sorry to hear this news, but instead she moved onto quoting me office policy, which was that I needed an exam before getting a prescription renewal. I told her I understood her policy, but that I wanted to talk with the doctor, in hopes that the doctor would understand the circumstances. But she wouldn't leave a message for me, just kept quoting policy. So between waiting 15 minutes to talk to a live person and then being quoted office policy, I lost it. I then moved up to her manager. Who was an equally frustrating individual! Neither staff member showed any concern for Mattie or what my family was going through. In fact after I told the manager Mattie had cancer, she then asked me why I was having headaches? Did I have stress in my life? Are you KIDDING ME? Wow! I know their ears were working, but perhaps not their hearts. At Georgetown, I can get angry and upset, but I try to be professional. I have never started screaming per se. But I can tell you on the phone today, I must have sounded unstable. I was yelling and completely snappy. Needless to say two minutes later the doctor called me back and did accomodate me with migraine medicine. I told her that her staff was unprofessional and insensitive, and frankly the whole experience makes me rethink coming back to her office. Have we come so far as a society and are so busy that we can't truly listen when someone is telling you they are in pain? I don't know, but today was another illustration of healthcare at its worst.
Mattie complied with getting dressed this morning and fed himself breakfast. I finished packing up and then we were on our way to the hospital. We literally got the last parking spot in the garage today, parking is quite a frustrating experience at Georgetown and then factor in a wheelchair, and this is the icing on the cake. We arrived at the clinic around 11:45am. Mattie met up with Jessie and Jenny, and he jumped right into creating. Mattie complied with taking his vitals and blood draws. Mattie's cardboard box creations however were all over the clinic today, and let me tell you there are A LOT of boxes. Linda had a storage closet that she was storing these boxes, but another group took over the closet and with that, Mattie's boxes lost their home. So now we have to find a space for them. Ann has offered to store them in her basement, and Peter says we really should take pictures of them and only save a few. So we will need to break this to Mattie. None the less, the boxes really are living proof of how busy Mattie has been this year creativity wise! Though I could throw out the boxes, they mean something to me, they capture a more whimsical and lighter moment or mood in Mattie's days at the hospital. Or maybe because they capture Mattie's spirit. Yes, I know, this is why I am considered a pack rat.
Mattie took out his Christmas box that he made in December and wanted to play with it today. While he was playing, a group of United Airlines personnel came by to give all the children teddy bears. Mattie took a picture with these lovely individuals, and they wanted to know about Mattie's box, particularly if Christmas can be celebrated everyday within this house. His response was yes and that gifts arrive each day too within the house!
After this visit, Mattie met with Dr. Toretsky for an examination. Mattie did very well through the exam, and even was entertained by Dr. Toretsky's trick light up thumb. When we left the exam room, Ann came to visit us. She brought me a wonderful lunch, hot tea, and a lot of goodies for Mattie and I. Ann spent a good amount of time with Mattie and Jenny today, and they all played with the Christmas house and there was a good Santa and bad Santa. It was a riot to listen to! Thank you Ann for supporting us and for everything you do for us each and every day! My family loves you.While I was eating lunch, Ann and I looked at each other, and came to the same conclusion. What was next for Mattie? In essence we were waiting around, but nothing was happening. So I found Denise, our social worker and she helped me track down a nurse, and I found out the hold up was with admissions. No one from the clinic could help me with the process today. So again, I had to leave the clinic and wait in the admissions office to register Mattie into the hospital. This whole process is absolutely crazy! Why? Because today was Mattie's 50th admission to Georgetown's hospital since August. Fifty times! Goodness gracious, you think they would know us by now. Why must we go through this administrative waste of time with each admission? While I was sitting in the admissions waiting lounge, Gail Chisholm, my patient advocate, found me there. She was stunned I was there, because she thought the process had been streamlined for us. Needless to say, I admitted Mattie and then headed back to the clinic.
Today in clinic we got to see Teresa and Maria (her mom). Teresa is an osteosarcoma survivor, and Maria has been a wonderful support to us. It is hard to believe that Teresa was ever sick, since she looks like the picture of health now. It gives you hope! I can't thank Jenny, Jessie, and Ann for engaging Mattie today. Jenny helped me upstairs with Mattie and she spent several hours with us. Jenny worked with Mattie on a wonderful painting of racecars. I snapped a picture of it so you could see it. Mattie created a whole story about the racecars and how they could escape underground if they needed to for protection. Mattie loved his "Jenny time" as he referred to it today, and it was great to see Mattie animated, blowing up balloons, and talking up a storm with Jenny and the nurses.
Mattie had a chance to go to the playroom today with Jenny. While in the playroom he met up with Laurie, a volunteer that has connected with Mattie. Mattie had fun painting and putting clay through a pasta maker. However, Mattie needed to come back to the room for the administration of MTP-PE, which fortunately went well today. While Mattie was in his room getting MTP-PE, Mary Dressendorfer, the director of technology at Mattie's school, came to work with Mattie on the computer. Mary has introduced us to a wonderful world of educational websites. I had the pleasure of an hour to myself while Mary worked with Mattie. When I got back, Mattie did not want Mary to leave, so I got to observe him interacting with the computer and attempting to read. It was great to see. Mattie was also eating up a storm while he was with Mary. On an aside, I am happy to report that Mattie has gained weight this week. He is looking better, just in time for the next round of chemo! We can't thank Mary enough for her time, energy, expertise, and love that she shows Mattie. I told Mary that she is like a ray of sunshine when she enters a room!
As we headed into the evening, Mattie was getting edgy. He mood instantly changed when Linda, Jenny, Jessie, and all the volunteers left the hospital. He desperately wanted to go to the playroom at 6:30pm, but it was closed. He was so disappointed and was so upset with me that I couldn't access the room and get him materials. Thankfully, Peter got off of work, and showed up 30 minutes after this funk began. Peter carted all our things up to the room (no easy feat!) and together we started organizing the room. Prior to Peter's arrival, I secured a cot and made the bed so I wouldn't have to do that tonight! Fortunately Peter brought a video for Mattie to see, and this distracted him for a bit, but it is 10:30pm and he is still in a funk. So much so, that I picked up my computer and walked out of the room. I can take just so much abuse, and disciplining Mattie constantly gets tiring quickly.
At 10pm, Mattie's chemo infusion began. Mattie will be getting doxorubicin first. This chemo is bright red. Peter took a picture of it tonight so you could appreciate how toxic it looks!
Doxorubicin is infused over a 30 minute time period along with mannitol (which protects the bladder). After this infusion, mannitol continues to infuse for another two hours. Then at which point, Cisplatin (clear in color) is administered. Cisplatin infuses over a 4 hour period. This whole process is then repeated tomorrow night at the same time. So we shall see what our night holds for us.
We want to thank the Nashman family for a wonderful Italian feast tonight. Dinner was incredible and very generous! Thank you Honey! The restaurant also brought balloons for Mattie, which made his day. They add a lot of life to his room. We so appreciate your thoughtfulness and support.
As we head into tomorrow, the childlife playroom is being officially opened with a ribbon cutting ceremony for its sponsors. Linda has asked whether Mattie would like to help cut the ribbon since the playroom means so much to him. Mattie is excited about this, and I hope he feels well enough to participate.
I end tonight with two messages I received today. The first one is from my friend, Charlie. Charlie wrote, "I was hoping that the second day at home would be as "pleasant" as the one before but unfortunately, it did not happen that way. I am sure you are frustrated with Mattie's refusal to take medicine to make himself feel better but compliance isn't his way. In fact, I think his stubbornness is part of his essential being and that as long as he demonstrates that, the "real" Mattie, is in there and fighting the disease. I can see Mattie's resiliency and his ability to deal with things in the long run, however as we know, what he is going through is exhausting for everyone in the family and causes frequent meltdowns. I suspect it will be that way on and off until all the therapy is completed. So many thanks to all who continue to rearrange their schedules and offer support like Whitney, Ann, and others. Whatever connections can be maintained are worth their weight in gold."
The second message is from my mental health colleague and friend, Susan H. Susan wrote, "Hmmm, I have to take issue with something in Wednesday's blog. I truly believe that Mattie IS a student and you ARE an educator, just different formats than what is considered normal, routine, and "semester-like." Mattie is learning alot about himself, his relationships, and what is really important (like the golf balls in the jar). And you, Vicki, are a number ONE educator in my book. Although I have worked in the counseling profession for over thirty years and frequently counsel individuals with chronic or terminal illnesses and their family members, you have opened my eyes to the "quieter" or "unspoken" dilemmas that are presented to people in their fight to heal and improve their physical/emotional well-being. My sincere thanks to you for this education that I am receiving through your blog. And by the way, my personal motto is, every day I want to teach something to someone and learn something from someone and invariably these two activities happen outside a classroom, sometimes with people I least expect will help me achieve these goals. By the way, Vicki, if you want to look at your teaching another way, consider the fact that since you started the blog you have had over 45,000 teaching moments based on blog count - can't do THAT in a classroom! Take care of yourself, dear friend."
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