Thursday, February 12, 2009

Thursday, February 12, 2009

Quote of the day:

"The Path of Life is not a hike or a race; it is a dance. And, in all dances, there will be a few steps backward. Just remember -- the steps backward are still part of a beautiful dance." ~ Laura Teresa Marquez


Wednesday was a LONG night. Mattie was up and down throughout the night, and at 3:15am, Mattie's nurse encouraged me to give Mattie tylenol. She told me that if his fever continued to rise the doctors would insist he take tylenol. So I decided to be proactive and administer it myself. But that wasn't a pretty picture on 3:15am, especially since Mattie was nauseous, had a high fever, and was irritable. Mattie had a hard time waking up this morning. In fact, he did not wake up fully until 11:30am. He was wiped out and very hot to the touch. Mattie has been running an 101.8 fever all day. However, the bigger issue presented itself immediately. Mattie was in terrible pain! Pretty soon after he woke up, he was screaming with a stomach pain. The nurse had administered him kytril (an anti-emetic) and Zantac (an antacid), but neither were helping him. Mattie was screaming so intensely, and then he demanded I find someone to help him. So I ran outside and caught Dr. Abu-Ghosh, the HEM/ONC attending physician. Dr. Abu-Ghosh assessed the problem without even seeing Mattie. She deduced that he has mucositis. I had heard horrible stories about mucositis from other patients, but since Mattie never experienced it, I had no idea what it looked like.


So I did a quick google search of mucositis and came up with the following: Mucositis is the painful inflammation and ulceration of the mucous membranes lining the mouth, throat, stomach, and intestines, usually as an adverse effect of chemotherapy. Oral and gastrointestinal (GI) mucositis can affect up to 100% of patients undergoing high-dose chemotherapy. Mucosal cells normally have a short life span. The chemotherapy can destroy the cells quickly and they are not replaced right away. There may be raw sores (ulcers) in the mouth and throat. It is painful, can interfere with eating, and may require pain medication for a week or two until the tissues recover. This now explains why Mattie feels like he is starving, yet when he eats, he can't swallow the food. I never put two and two together, I just assumed he was nauseous like all his other post-chemo recovery times. However, today I also observed that his cheeks are swollen like a gopher. I asked Mattie to open his mouth and to me, his mouth looked fine, but then the nurse later showed me this white thread like coating on the sides of his mouth that indicate mucositis. So Mattie has been experiencing terrible pain, and Dr. Abu-Ghosh solved this problem quickly by placing him on morphine every four hours. The morphine is helping tremendously. What a lesson this continues to be for us. The side effects of chemo are enormous! I know when I have had a simple cold sore in my mouth, it is super painful, I can only imagine what this feels like to have such sores lining my entire mouth and stomach. What torture for a six year old to go through. Actually it is a seven month torture, that in reality is the beginning of a lifetime journey of pain.

We were visited by Dr. Synder this morning. Mattie doesn't remember this because he was totally out of it. But Dr. Synder told me how sorry she was to hear that Mattie did not attend the Disney on Ice show. In fact, as I was describing Mattie's level of disappointment, Dr. Synder had tears in her eyes. She is a very empathetic doctor. Dr. Synder also helped us secure phosphorus in his IV fluids so that Mattie wouldn't have to take an oral supplement when he wasn't feeling well.

This afternoon, Ashley, a RCC mom and friend, came to visit us. Ashley was our midday helper and brought me a wonderful lunch and an even more sinful dessert. She brought me 6 amazing cupcakes from Happy Cupcake (a store in Dupont Circle). Ashley and I had the opportunity to chat a bit, since Mattie spent a good chunk of the day wiped out and sleeping. Then Ashley gave me the gift of going outside and getting fresh air and lunch while she watched Mattie for a while. That worked out very well, and when I arrived back, Mattie just awoke. Thank you Ashley for the beautiful handmade valentine's day cards to distribute to nurses. They are creative and a lovely gesture.

Mattie had a play session this afternoon with Jessie. Jessie worked with Mattie on a wood model kit and then started creating a plane made out of boxes. Not unlike the plane he made at Sloan Kettering, but just on a smaller scale. Mattie misses that huge airplane he made while in NY, but there was NO way it would fit in the car. So now he is trying to replicate it! After Jessie left, Linda came by. Mattie has been looking forward to seeing Linda all day. Linda continued to work on the plane structure with Mattie, and then she also gave him some wonderful lego sets (for example, a cobra and a tarantula) to work on tonight. Linda told Mattie that if he is up to it, she wants to give him some private playroom time tomorrow. Because Mattie is SO neutropenic he can't be around other children or really out of his room, but if he is isolated in the playroom he should be okay. Mattie is looking forward to this adventure and possibly seeing Chris, the team leader of the chemistry club at Georgetown on friday.

Mattie also had a visit today from his 'big brother,' Jey, and Meg and Laura, Linda's interns. I do want to give you all an update on Brandon, Mattie's big buddy. Brandon did have his appendix removed at midnight. He is in a ton of pain today, and also had surgery to get his central line removed. It is our hope that he will be tranferred up to the PICU from the other unit he is currently in. I had the opportunity to talk with Toni today, Brandon's mom, and I am happy to hear that he pulled through both surgeries so well.

Mattie has been looking forward to Peter's arrival tonight, because Peter was bringing the vanilla valentine cupcakes he received earlier in the week that were at home. Mattie devoured half a cupcake. It was great to see! Peter and I have been in communication all day about Mattie's condition, and when he walked in tonight, Peter got to see our lego cobra creation, and he received further updates about Mattie from all the nurses. Mattie is headed for a platelet transfusion tonight. So you should be getting a feeling for how devastating ifosfamide and etoposide were for Mattie this time (he has: a high fever, low red blood cell count, low platelets, an ANC [absolute neutrophil count] of zero, and mucositis)!

We had a lovely visit tonight from Jeff Turner. Jeff is the HEM/ONC nurse manager for the PICU. Jeff wanted to come and tell us how much he admires Peter and I. He said he admires Peter because he works full time, and yet is very generous with his time and love for Mattie, and he said I reminded him of his mother, and if he got sick he would want me taking care of him. I view this as a VERY high compliment, because Jeff loved his mom dearly. I am not sure if Jeff realized it, but his visit tonight, right before he left to go home, made us feel very special and appreciated!

We want to thank the Goff Glennon family for a wonderful dinner tonight from the Cheesecake factory! We appreciate all your support today with lunch and dinner! It means a lot to us. I want to end tonight with two e-mails I received. The first one is from Charlie, my former student and now friend. Charlie wrote, "Wednesday was a tough day to read about. Mattie in pain and you knowing that you were going to have to disappoint him and take him back to the hospital. I know we were all hoping this post chemo session would go as one of the previous ones did, with Mattie staying well but unfortunately it was not to be that way this time. I hope that Mattie recovers quickly and is able to participate again with his friends. Acknowledging Mattie's disappointment was absolutely the right thing to do; once again, something that seems small is actually large-the gift of truly being heard, not what is said, but what is in one's heart."

The second e-mail is from Susan. Susan is also a former student of mine and now a friend. Susan sent me two wonderful quotes:
"The flower of kindness will grow. Maybe not now, but it will some day. And in kind that kindness will flow, for kindness grows in this way." ~ Robert Alan

"The good deed you do today, for a brother or sister in need will come back to you some day, for humanity's a circle in deed." ~ Robert Alan

Susan wrote, "I think that all the kindnesses that you do for others, of which you are not even aware of, because it is just the essence of who you are, is coming back to you." Thank you Susan for the high compliment! In difficult times, of which we have many of them now, I reflect on these lovely statements.