Quote of the day: My friend Charlie wrote to me and said, "this quote is dedicated to Ann H. and the other wonderful Mattie volunteers and hospital staff."
"Success has nothing to do with what you accomplish in life or accomplish for yourself. It’s what you do for others." ~ Danny Thomas
"Success has nothing to do with what you accomplish in life or accomplish for yourself. It’s what you do for others." ~ Danny Thomas
Mattie and I were very busy on Thursday night. One of the projects we created were silk screens with markers. Jessie (one of Mattie's art therapists) brought us a basket of art supplies from the clinic. So last night we got creative. Mattie started a silk screen, but then wasn't happy with it, so he gave it to me, and wanted me to do something with it. When Mattie handed the screen to me, all that was on it was a green line. To me the green line looked like a snake and I tried to transform the screen into a desert scene with Mattie's green snake in the center. Mattie and I chatted about the desert, and he was very engaged in his own creation.
Left: The silk screen Mattie started, featuring a green snake in the center and his cactus.
Right: This is the silk screen Mattie created for me. He entitled it, "Waterfall of Love." The big red object on the left is the waterfall, and on the right is a heart with the word, "mom" in the middle.
Thursday night was simply ENDLESS. To cut to the chase Mattie never went to bed until 5:30am. I shut the lights off at around 1:30am. However, Mattie started feeling pain. Pain all over. It was almost like every bone and muscle hurt. Which of course is frightening to me, since Mattie has Bone Cancer. I have been concerned with the amount of Morphine that Mattie has been taking, so last night when Mattie complained of pain, instead of getting his usual 1mg of Morphine, this time he received 0.5 mg. However, Mattie wasn't aware of this dosage decrease. What I began to see is that the 0.5mg amount accomplished nothing. Mattie continued to have pain and to whine. The whining lasted for hours. About an hour after Mattie received the 0.5mg dosage, Mattie's nurse gave him another 0.5 mg amount of Morphine because he couldn't take the pain. I was hoping this second amount would help Mattie, but it did not. Literally my head was pounding from hearing Mattie complain about pain from 1:30am to 5:30am. At around 5am, I couldn't take it anymore, and I asked Laura (Mattie's great HEM/ONC nurse) to come back in. At that point to told Laura that the 0.5mg dosage didn't help reduce Mattie's pain and he needed the 1mg level of Morphine. Laura had to ask the resident if this was okay to receive because he basically had been given Morphine back to back all night. Thankfully the resident allowed Mattie to have Morphine at 5am, otherwise none of us would have gotten any sleep. What I learned from this is Mattie has very legitimate pain. He did not know we lowered the concentration of the Morphine last night, he thought he was getting his usual medication. But the lower dosage did not work. That was very telling to me.
At 5am, when Laura was giving Mattie IV Morphine, Mattie was talking and asking Laura questions. The topic of conversation was our middle names. Where Mattie found the energy to have such a conversation is beyond me, because I was on the edgy and snappy end of the spectrum. There are times last night I landed up snapping at Mattie, but then I realized he must be in a lot of pain and wasn't manipulating the situation. I spent a great deal of time sitting by Mattie's side and just holding him. After Mattie received the Morphine at 5am, he finally went to sleep. But at 7:30am something awoke me, and after only two hours of sleep I was up for the day.
I took a shower to wake up and when I got out of the shower, my parents were in the room visiting. My mom had an early MRI appointment at the hospital, and Dr. Bob text messaged me the results as soon as I alerted him the scan was done. The problem is my mom has two herniated discs, which would explain why she is having intense pain. This whole back pain situation has been unsettling for my parents and for us, and I am at least happy that the issue has been diagnosed, but my parents head back to Los Angeles on Monday, and the question becomes how easy is it to travel with a painful back?
While Mattie was sleeping, I had the opportunity to talk to Dr. Biel, Mattie's psychiatrist. During the oncology team's psychosocial rounds today, he heard about our session with the clinical psychologist. Lord knows how often my family is discussed during these weekly psychosocial rounds. We have SO many psychosocial issues, we could provide enough material for a textbook. None the less, I appreciated Dr. Biel's sincerity and for understanding my perspective on this, and frankly my opposition to sharing Mattie's prognosis with him is echoed across the entire Lombardi Clinic practice. I was very happy to hear that. In addition, Dr. Biel and I also discussed Mattie's pain complaints. We both assess these complaints to be legitimate and Dr. Biel alleviated my feelings about the potential to build up tolerance to Morphine. After I met with Dr. Biel, Dr. Synder stopped by. Dr. Synder is Mattie's oncologist. She and I discussed Mattie's counts (Which are FINALLY rising today!!! Mattie has an absolute neutrophil count of 20.), his level of pain, and his delayed MTP-PE reaction. I am very fond of Dr. Synder, and the irony is under normal circumstances, we most likely would be friends. We see things eye to eye. However, the beauty of Dr. Synder is she can handle Mattie. Which isn't an easy task, especially when it comes to having an examination. Mattie will roll up into a ball, and just doesn't cooperate. In fact, I remember in the Fall all the residents would come in and try to examine Mattie. Now I think they have learned not to bother him. Which I have to respect. They really try to accomodate him. But today, Dr. Synder worked VERY hard to rationalize with Mattie and explained to him why it was imperative for her to physically examine his stomach. We are trying to get down to the bottom of his stomach pains, and it is hard to do this when he won't let anyone touch or push on his stomach. Despite her best efforts, Mattie wouldn't comply to be examined initially. But I think Mattie sensed our disappointment in him, and then decided he better get Dr. Synder to do it, versus another doctor he may not know so well. So I literally stepped out of the room with my mom, so he could have a one on one examination with Dr. Synder. Dr. Synder said that Mattie cooperated and verbalized his pain. Excellent. His pain seems consistent with a bowel or severe constipation issue. So we are working on trying to address that issue. None the less, I am trying to positively reinforce Mattie for any mature or brave decisions he makes in his treatment plan. Such as being examined, stretching out and exercising his right knee, wearing his knee immobilizer, and taking oral medications!
Mattie's oncology nurse today was Nicole. Though we are very fond of Nicole, she is rarely assigned to work with Mattie. My joke with Nicole is, if we are in the hospital, she must be working. The timing always works out that way. Nicole and Mattie dress alike. His PJ themes tend to match her hospital scrubs. It is kind of cute that way. Mattie was fascinated by her gecko watch today and he even told Nicole that she was one of his favorite nurses. It was very cute. Even though Mattie is seven, he gets how important these oncology nurses are to us and to his health.
Mattie and I played some computer games this morning, and while we were doing this, Mattie had a visit from Anna (Mattie's physical therapist). At first Mattie did not want to budge, so Anna joined Mattie by the computer. That helped to reestablish their bond. Anna has been away from the hospital for two weeks because she just got married. Katie (one of Mattie's great HEM/ONC nurses) also came by to say hi, share her smile, and support. She watched Mattie play his computer game and helped act out some of the dancing characters on the screen. After Mattie played a round of the game, he then was interested to see the activities Anna brought up for him. Anna got Mattie standing and trying to catch bubbles floating in the air. However, as only Mattie can do, he switched the game to capturing bubbles with your tongue and EATING them (check out the picture!). Yuck! In fact, I even made a deal with Mattie, I would eat a bubble myself if he took his calcium supplement. I held my end of the bargain (what one would do for love), but Mattie could only stomach half of the supplement. So Peter and I continue the quest of finding a supplement he will take.Mattie had the opportunity to meet Dan today. Dan is the Junior from Georgetown University, who I told you about yesterday. Dan spent several hours with Mattie and Linda today. This was the perfect setting for Dan to meet Mattie, and I am very grateful for Linda being present to explain Mattie's central line to Dan and to assist in the establishment of this relationship. Linda is a God sent.
Mattie enjoyed his time with Dan, and I hear Mattie spent a lot of time on his feet and even took a STEP! You can see that Mattie was busy taping Linda to a chair today. Not great for Linda, but wonderful physical therapy for Mattie!
Left: Mischievous Mattie, taping Linda up with some help from Dan.
Right: Mattie and his new buddy, Dan.
While Mattie was with Dan, I went for a walk around the hospital, but had to cut that short because of the down pouring of rain. I instead got a hot tea, sat down, and did one of my favorite pass times, watching people. While doing this, I literally fell asleep. I am so tired, I land up falling asleep wherever I am. Especially if I am not physically moving! As the afternoon went on, Peter joined me, and then my parents.
We would like to the thank the May family for the wonderful home cooked meal they provided us tonight. I hear Mattie ate some pasta and loved the frosted cookies. Thank you for going out of your way tonight! While I am away from the hospital, it is nice to know that Peter and Mattie are eating well.
I am writing this blog from home tonight. After 11 straight days in the hospital, I needed a break. Peter will spend the next two days with Mattie, and Mattie is thrilled. I think he was very pleased to have this father-son time. Brandon, Mattie's good buddy from the hospital, is making a special trip to visit Mattie at the hospital tomorrow. I can't thank Brandon enough for being such a good friend. They are united by cancer.
Mattie's nurse tonight is Sarah Marshall. Sarah Marshall is another fabulous nurse and a cancer survivor. Sarah Marshall was on vacation recently and brought back some gifts for Mattie. Thank you so much for the hat and t-shirt from Florida! It is so nice to be remembered and I continue to be touched by the amazing support and love Mattie's nurses have for the families they work with.
I end tonight's posting with two messages I received today. One is from my friend, Charlie. Charlie wrote, "It was great to read about the return of Mattie's good spirits and see the picture of him with the flyswatter working his arms and enjoying it. The picture of Tricia is priceless and it tells you how wonderful the nurses are and what they are willing to do to raise the spirits of their patients. They (and the therapists) are truly a wonderful bunch. I am glad you got out for a while with your parents but how awful an ending to that outing. I hope your mother’s MRI goes well and that she feels better quickly. I do wish you could get more rest and I saw your note about trying to take a nap while Mattie was sleeping. Unfortunately, a hospital is usually the last place you can rest with all the things going on 24/7. I think that increases the recovery time for a lot of patients and certainly stresses out their caregivers. As for Mattie’s intestinal problems, I am so glad you found someone knowledgeable, helpful and with the right attitude to help you. It seems that not only does one medical issue for Mattie create another and the treatments add to those issues as well. Hopefully, once Mattie is off all of the cancer fighting drugs his system will not take too long to return to normal and that in the meantime his problems and pain can be addressed."
The second message is from our former neighbor and friend, Goli, who is now living in NYC. Goli wrote, "Sometime ago, you gave me an azalea plant, that I have named "Mattie." Did you know I name my plants? That is how much I love them. Well, my azalea has been fighting very hard for its life. Sometimes it is doing OK, and sometimes it goes through shocks and I feel it is the end. But, it comes back better than ever each time. It is amazing. Even the plant you purchased and gave me fights and goes through nightmarish times, but it has your qualities, and comes back each time. The plant has joie de vivre, which makes it a fighter. I wish I were more like your friend Charlie, and could express my feelings and thoughts more eloquently. But as Charlie said,
"Odds have been beaten, .... someone has to be in the 10%." I think the only people who could be in that 10% must have the qualities that you three have. Never doubt your judgment about your son. You know him better than the whole world. In addition, you are the best professional in mental health I have seen in my life."
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