In the midst of the kind of day we had today, I want to thank Susan S. for this wonderful quote she sent me. I am beginning tonight with it, because it is my hope that out of this nightmare will eventually come a rainbow!
Sometimes It takes a lot of rain before you get your rainbow. Don’t give up, yours is coming. Keep believing!
Last night and today are the kind of days which you don't want to repeat, much less remember. They say things happen in threes, well for us they come in fives, sixes, or sevens. Let me recall for you our monday night. Mattie's urine met its required PH by 8pm, a PH above 7.5 is necessary to start the methotrexate infusion. He was scheduled to start chemo at 9pm. At 9pm, Anita comes into Mattie's room. Anita was Mattie's nurse and she explained that she caught a pharmaceutical error in the chemo product that was prepared for Mattie. The pharmacy sent up the incorrect dosage of chemo for Mattie. Instead of chemo for a six year old child, a chemo dosage for a baby arrived. Fortunately Anita caught it. But it gets better. The hospital doesn't have a pediatric oncology pharmacist on staff during the evenings, so they had to call in the on call pharmacist, who lived an hour away. This woman had to jump into her car and head back to the city. After all of this, Mattie's chemo was finally put together by midnight, and the infusion then began. Meanwhile we debated back and forth about his anti-emetics, because they were administered to Mattie at 9pm, when we thought he was going to get chemo. These medications were in his system for 3 hours, and we were wondering whether they would be just as effective if the chemo was started at midnight. The ironic part about all of this is what we feared would happen with this chemo (vomiting) wasn't the actual problem that arose. We are learning never to expect the expected!
Mattie received methotrexate last night. Some of you will recall my previous description of this medication. It is the color of highlighter yellow. It screams toxicity, just looking at it. Any case, at some point through the night, Mattie's vitals revealed that his pulse rate was low and his blood pressure was high. It was a consistent pattern last night. By 4am, the resident wasn't happy with what she was seeing and she reported it to the attending. The attending physician ordered an EKG for Mattie to rule out heart murmurs or arrhythmia, which could cause Mattie's high blood pressure (and would be a significant issue to address). We agreed to the EKG, but didn't realize what was coming our way. At 4:30am, in walks two techs with an EKG machine. The lights all went on and they started talking to each other loudly. The whole experience frightened Mattie. They treated him like an object rather than a frightened child. Mattie landed up crying hysterically and it took a while to calm him down. If these two things weren't bad enough (the mix up with the chemo and the EKG), we were hit with a third issue. We told the staff that Mattie had a scheduled PET scan for today at 2pm (which would mean he couldn't eat or drink for 8 hours before the scan). We debated back and forth with the staff about this. There appeared to be no record of a PET scan for Mattie and at 3am, Peter and I were rummaging through our e-mail accounts looking for the written confirmation we received. Fortunately Peter found it. Each of these incidents alone could be enough for a person to tolerate, but factor in all three issues on top of our already stressed state and it does not make for a happy mix. Peter went out to the nurses desk and complained and then called up our patient advocate. We understand things go wrong, and that things happen, but the way treatments are delivered and the insensitivity to Mattie and his needs won't be tolerated. I find myself continually trying to explain my feelings to doctors, which further frustrates me. If you can't honesty get how we are feeling, and this is your profession, is it my job to educate you? Well perhaps the answer should be no, but maybe it is the educator in me. I feel like I am on a quest to help people understand the stresses Mattie and his family are under. On a side note, Mattie's EKG was normal.
Mattie woke up in a mood. He was wiped out because he was up on the hour last night. Mattie couldn't eat or drink this morning because he had to wait for his PET scan at 2pm. Because Mattie is scared of these scans, he needs to be sedated for them. Before we headed to the scans, I had a visit from Ellen (many of you know Charlotte, Ellen is Charlotte's mom). Ellen e-mailed me and could tell I was having a hard day and also could tell I wasn't planning on having lunch. So she kept me company and also brought me lunch. What a good friend! Thank you Linda for watching Mattie so I could eat and chat with Ellen! After lunch, I went down with Mattie and Linda to the PET scan. Mattie got sedated, and literally collapsed in my arms. I then waited upstairs in Mattie's room for him to come up post-PET scan. During that time, I was visited by Jenny and Elizabeth (an art therapist intern from GW!). We had a lovely conversation and I replayed last night's experience with them. They are amazingly empathetic and have a demeanor that makes you feel unjudged and appreciated. While we were talking, we could hear Mattie being wheeled down the hallway screaming. I spent the next three hours helping Mattie come out of his sedation. It was my understanding that Mattie would get versed (a type of sedation) to help him transition smoothly to being awake, but he did not get it today. Which is what accounted for the next three hours of torture. Mattie was upset, agitated, and at times inconsolable. It is a feeling of helplessness like no other as a parent. Fortunately I had experienced this before, but basically in the end, it is me who lives through these days. Doctors and nurses bounce in and out, but I am the one getting hit, being talked down to, and so forth.
I want to introduce you all to Linda's interns, Whitney and Lesley. These are two very special ladies. Whitney has been observing Mattie's interests and she brought to the hospital today 13 wonderfully shaped sharks' teeth. She hid them cleverly in a tub of sand, so that Mattie had to dig through the sand to unearth the teeth. This activity brought a smile to his face, and I felt the need to recognize this tonight in the blog, because there wasn't much that made Mattie smile today. Thank you Whitney for sharing your sharks' teeth with us and for the wonderful book about sharks.
In the midst of Mattie transitioning out of sedation, we had two visitors. It was wonderful to see Mattie's school counselor, Ms. Susan D. Poor Susan saw and experienced Mattie at his worst, but she did not skip a beat. Thank you for delivering the wonderful "scary" cards from Ms. Houghton's class. In addition thank you for the wonderful chopsticks you brought back for Mattie from your trip to San Fran. That was very special. Also we look forward to looking at Mr. Weiman's book, Flotsam! Our second visitor was our friend Joy I. Joy arrived with dinner and a gift for Mattie. Thank you for the wonderful spaghetti. This is the food of choice this week! Mattie devoured three bowls of pasta in between crying. Thank you also for the wonderful craft kit you gave us. I look forward to making paper chains with Mattie. Thank you for sitting with us through this and for watching Mattie while I spoke to his doctor for a few minutes!We received a special phone call from Joan Holden today. Joan is the head of SSSAS. Joan is celebrating her 25th anniversary this year, as head of a well known private jk-12 independent school. It is very evident why she is so successful. She is commited to her students. Joan doesn't know our family that well, but she has made it her business to get to know us, has extended her help, and whatever SSSAS resources she can offer to assist Mattie. Thank you Joan for your call and for continuing to check in.
Mattie received two very special gifts today. An enormous halloween basket was sent to Mattie by my students in the Human Services program at GW. Thank you Honey (the program's director), Tess and Talia (two very special students) for spearheading this amazing gift. Below you will see this basket. It was stuffed with balloons, candy, and all sorts of fun trick or treating gifts. It is my hope that Mattie will share them with Linda and some of the other kids on the floor. Check it out below! I am blessed with very special students.
The other special gift came from Srinivas and Artie. Mattie loved the fishy theme. We can't wait to play goldfish and Mattie is already playing with his fishy finger puppets. They are great. Below you will see Mattie playing with his puppets.
As I try to continually do, I would like to share two e-mails with you that I received today. It sounds silly, but sometimes these e-mails really help me pull out of the funk I can get into. One came from my friend, Charlie. Charlie said, "We continue to pray for Mattie, you, and Pete. We will have Mattie's name read as part of the service requesting healing/physical and spiritual. On Rosh Hashana we ask for names to be inscribed in the book of life for a good and healthy year and on Yom Kippur that the inscription be sealed. I pray every night that this may happen for Mattie. This definitely describes the Brown family!"Love generously, care deeply, speak kindly. Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
The second e-mail comes from a SSSAS mom who I have recently had the opportunity to meet at Mattie's carwash fundraiser. Liza follows Mattie's story daily and her daughter who is a senior at SSSAS amazes me with her determination to inspire others to host a fundraiser for Mattie. Liza wrote, "I'm sure that I'm like others who wait each night to read your entry. It is just something that I feel that I must do every night before I go to bed. Although so many of us do not really know you, Peter, or Mattie well because our kids are older or younger or we haven't really crossed paths, we are all so totally connected to you and your family. You have created the most amazing web that connects all of us to you, to your family, especially to Mattie and to each other. I'm sure that I can speak for others when I say that I'm grateful for your candidness, your heartfelt thoughts and your gift for describing your journey with Mattie. Because of you, I have made new friends and am grateful."
On the electronic front, thank you Karen, Mr. Weiman (for the Jib Jab card of JJ dancing in High School Musical 3!), Charlotte, Kim (The Resurrection Sun will always shine down on you is a beautiful sentiment), and Susan for your wonderful e-cards. Thank you Ms. Pollak and Emily W for your e-mails. I want to thank you all for your electronic contributions as well. In these difficult times, I must say we are deeply fortunate to have such an incredible support network and I don't want you to think for one moment we take this for granted. We are very appreciative.
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