Friday, May 15, 2009

Friday, May 15, 2009

Quote of the day: "A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path." ~ Agatha Christie

Mattie had trouble falling asleep on Thursday night. In fact, he was up until 2am. We were playing with the plastic food, cash register, and plastic shopping cart that Linda gave Mattie. But I wasn't alone. Mattie's wonderful nurse, Erin, joined in the fun. She helped me buy groceries, and with the prices Mattie were charging, Erin and I had to do most of our shopping with a credit card. For example, one bottle of ketchup was $57. After the day I had on Thursday, Erin was a sight for sore eyes. Erin helped me play with Mattie, and since I was up on the HOUR collecting urine, Erin helped me with that too. Several times she was in the room with me and helped through the entire process. I am not sure if I just looked particularly awful and wiped out, but the help was so greatly appreciated.

Mattie was in a lot of pain last night as well. He complained that his knees and ankles hurt, on both the left and right legs. So Mattie needed morphine Thursday night and this morning. Today was another tough day. Linda and Meg were both not around to help me. However, I would like to note that Linda and I have been trading e-mails since Thursday's physical therapy incident. I consider myself fortunate to have someone as dedicated, caring, and such a strong advocate for Mattie in my life. I was so frustrated with Mattie's behavior on Thursday, that I was losing perspective. Fortunately, Linda understands where I was coming from, and how challenging a week this has been for us.

I have now accepted that there are some things that Mattie will not be given a choice about. I have finally come to this conclusion. The first thing is that Mattie will wear his knee brace, and won't get an option, it is just one of the things he will have to learn to accept. The second thing is that Mattie will need to take oral supplements such as calcium, so we can start migrating away from IV fluids at home. But this will take a lot of work on our part. Because Mattie is extremely strong willed. When he decides he won't do something, he means it!

Ann was scheduled to spend time with us today, but unfortunately because her son was home from school and needed her help, she was unable to come to the hospital. However, she and Alison were obvious in close communication, and Alison came to Georgetown instead. Alison had a difficult commute since it is graduation time in DC, and the roads were very congested. When Alison arrived, Mattie began to play with her. They worked on a puzzle together, and while they were doing this, I had the opportunity to talk with Dr. Synder, Mattie's oncologist. Dr. Synder heard about Mattie's episode during therapy yesterday. She wanted to talk with me about that as well as issues to consider now that we will be post-chemotherapy on Saturday. Dr. Synder attended psychosocial rounds today, in which clearly Mattie was discussed. I think folks came to the conclusion that Mattie has an inability to self soothe, or comfort himself. Instead, he looks to his external world for support and to play with him. I couldn't argue with Dr. Synder, because that is a valid observation. Mattie is very needy and demanding. I reflected upon this observation and comment the whole day. I think it is accurate, but I also think it is inevitable considering the circumstances. In fact, I wonder how well an adult would do in Mattie's situation? Would we be able to self soothe ourselves? Part of me says NO, we would probably ask to be drugged/sedated to a point where we slept through most of the horrible days. I am good at blaming myself for so many things, and this was yet another thing I took ownership for today. But as the day went on, I slowly came to peace with this comment, because I did what had to be done in my opinion to support Mattie. Ann made me chuckle tonight when I told her about Mattie's inability to self soothe. She is right, in the grand scheme of things if this is the only thing we have to contend with, then that is a good thing!

I then joined Alison and Mattie as they were assembling the puzzle. However, pretty soon there after, Anna, Mattie's physical therapist, came by to visit Mattie and have a session. As soon as Anna walked in the door, Mattie started crying and worked himself up into a state. Mind you Anna was just there and talking. She hadn't even touched Mattie yet. Needless to say, I had a VERY difficult time calming down Mattie. He just kept crying, "Mommy, Mommy, Mommy!" Even though I was sitting right next to him, it was almost like he couldn't feel me or acknowledge my presence, he was that upset. I told Anna to get Dr. Synder back in the room, so she could observe this. Dr. Synder tried to rationalize with Mattie, but that wasn't about to happen. So everyone left the room (except for Alison, I think), and I tried my best to stay calm, and quiet down Mattie. However, as soon as the door to his room opened back up, Mattie began to cry again. However, this time, Anna brought in Dr. Biel with her. Dr. Biel is Mattie's psychiatrist. We haven't had to work with him for several months now, because Mattie's issues had stabilized. But several fears and anxieties are surfacing again. Dr. Biel started to ask Mattie some questions, but he did it in a very clever and non threatening way. Mattie was non-verbal throughout the visit, so Dr. Biel would ask the questions, and Mattie's left foot would do the answering. Mattie's foot shook back and forth to indicate, yes and no, and his foot was even skilled enough to show pain, fear, and happiness. It turns out that Mattie is very frightened of feeling pain, which is why he doesn't want to do physical therapy. This is something that we will be working with Dr. Biel on, as well as beginning to prepare Mattie for his next surgery. However, Mattie will begin taking anti-anxiety medication again, in order to help stabilize how he is feeling. None the less, each time one of these episodes occurs, it takes its toll out on all of us.

Once all this commotion died down, Mattie wanted to show Alison some Muppet clips on You Tube. It made them laugh together, and I had an opportunity to eat the lovely lunch that Alison brought me. Thank you Alison for the visit, for staying through all the crying and chaos, and for staying calm and collected with Mattie.

Later this afternoon, Jenny came by to visit Mattie. Jenny knew all about Mattie's day on Thursday from reading the blog. I truly appreciate how Mattie's support system stays connected to our situation, because I think it can only help them understand what we are going through fully. Mattie showed Jenny these Muppet clips and while we were watching, Anna came back to work with Mattie. This time, I encouraged Mattie to let Anna watch the Muppets with him. Mattie eagerly showed the video clip to Anna, and treated her as if nothing had transpired between them. I was happy to see this, and Anna did a good job at moving past what happened and re-engaged Mattie. Anna told Mattie that she wouldn't see him for almost two weeks because she was getting married. She asked him who he thought she would miss. He said, "Mattie!" He was happy to hear her agree. In fact, I just recently learned that Linda has gotten married to Mattie's left leg, George, and Anna has married Mattie's right leg, Steve. That was news to me. There is a lot of marriage talk in the air at the hospital, so I guess Mattie wanted to be a part of all of this.

I had the wonderful opportunity to see Denise and her family today. Denise is a fellow GW graduate, and is a professional colleague of mine. Denise made us a wonderful dinner tonight. We all loved the shrimp and pasta, and we need to track down this recipe. Denise and Alison spoiled me today with fabulous fruit, and I want to thank Denise for the pastries, and Mattie wants to thank you for the cute beanie cat! Lynx and his new cat, Static (named after static cling, which Mattie feels this cat has), love Denise's beanie cat addition! I had the opportunity to chat with Denise's daughter who may be interested in working some hours for me during the summer to help me with Mattie. I have a long summer ahead, and if you know of other young individuals who you think would be a good match for this kind of work, please do not hesitate to e-mail me and let me know. I figure the best way to find the right match for Mattie is starting with our amazing network of supporters for ideas.

My parents came over later in the afternoon, and chatted with Mattie. Mattie shared his You Tube videos with them. When Peter arrived, I packed up to head home. I have been at the hospital for four straight days and nights, and tonight, Peter and I traded. Unfortunately, Peter called me at 10:30pm, to let me know that Mattie had another anxiety episode, and was screaming out for me. So I spoke with Mattie on the phone, and I assured him he will be coming home tomorrow night.

When I got home, one would think I would be headed to relax. But my complex had other things in store for me. They came into our unit this week and replaced our kitchen counter tops and closets. That is good in theory, but I can assure you everything was a mess. I had to reorganize shelves, throw everything in the dishwasher, vacuum, and so forth. Needless to say, this did not put me in a good mood. To add insult to injury, they are still working on our balcony, and in so doing they inadvertently moved our TV satellite dish. So at the moment we aren't getting any TV. You really just have to sit back and laugh about all of this!

Since tonight is our last night of chemotherapy, Erin (a fabulous HEM/ONC nurse) brought Mattie mini vanilla cupcakes and Pirate Booty type chips. I thought that was SO thoughtful of Erin to celebrate the occasion with us. I wasn't actually expecting confetti to fall out of the PICU ceiling for Mattie, but some how this day feels totally anti-climatic. Maybe it is because we have a major surgery looming over our heads.

I would like to end tonight's posting with two messages I received. The first one is from my friend, Charlie. Charlie wrote, "What a horrible day Thursday was. Even if you did not read the blog you could tell just by the fact that there was not one picture, that something was going on yesterday. How awful for you to first, have a really difficult night, followed by a situation where Mattie's pain was not easily alleviated; no mother can stand by and watch her child in pain and not feel it herself. Then later on to have Mattie come completely unglued; I understand how difficult it is when you are not at home and you try to deal with behavior that you would not normally tolerate. How much pressure do you put on Mattie to conform? At what point do you draw the line and are you infringing on other people if you do so? This is definitely not a situation for the faint of heart or those who lack stamina. I know you feel that you will have to "unteach" some of these behaviors once Mattie's situation stabilizes, however, sometimes expediency is required for the safety and well being of both your child and others. Hang in there and I hope today is a better day."


The second message is from my colleague and friend, Denise. Denise wrote, "I read your blog this morning and my most fervent wish is that there was some way that I could hold your pain for you for a brief time, so that you could have that experience of relief just for a moment. As a mother, I am in awe of your strength. Please be compassionate with yourself. You are doing a brilliant job. When Mattie was "doing pain and frustration" you instinctively knew that he needed grounding and support and you gave it to him by sitting in the wheel chair and letting him sit on your lap. He needed to feel that sense of containment and safety and you recognized that and gave it to him. I hope that you were able to get a bit from Linda and your mom for yourself. Just like all the meds Mattie takes to battle his cancer, pain meds have side effects. HE ABSOLUTELY NEEDS THEM and that being said, they do affect his mood and thinking, as well as his body, in the moment. I can't imagine how difficult that is to deal with for you, Peter and Mattie~especially in your exhausted, fearful states. Vicki, I am not near as eloquent with words as some of the other people who write to you and I want you to know this is from my heart. Be kind and gentle with yourself, you are doing a phenomenal job. You are an inspiration to all of us and you are the world to Mattie (and I recognize that can be a burden at times and a joy always). I send you a hug, just for you. On another note, I don't think that there is one mother out there who hasn't used external motivation at some time to get a result. It is normal and we all recognize it is not the preferred mode. We do what we need to do in the moment. I let my 9 month old son eat McDonald's french fries in the car when I was driving to NY on NJTP with him to see my grandmother. He hated being in the car seat and it was the only thing that kept him quiet and both of us "grounded" (i.e., I didn't jump out or throw him out of the car). He is 22 and no worse for that experience and does not eat McDonald's as an adult. Imagine that circle of love and support all around you and imagine leaning into it for the love and acceptance that will support you as you continue to support Mattie."