Tuesday, May 12, 2009

Tuesday, May 12, 2009

Quote of the day: "A mother's arms are made of tenderness and children sleep soundly in them." ~ Victor Hugo

MTP-PE knocked Mattie out on Monday afternoon, and he landed up sleeping right through his first night of chemotherapy. He of course woke up every two hours to go to the bathroom, but he was simply exhausted and headed right back to sleep each time. I however, was edgy because I wasn't sure if he was going to get sick from the chemotherapy, so I landed up staying up until 1am to see how he was doing. I was up and down all night collecting urine specimens for Mattie, and by 7am, I figured I better wake up and get myself together before the day started with people coming in and out of Mattie's room.


Tricia was Mattie's nurse today. Those of you at the walk, may have met Tricia. She attended the walk and brought her three children! It was lovely to meet her children in person after having the opportunity to see some of her wonderful photos. Tricia brought me hot tea this morning, and as always is looking out for us. While Mattie slept in this morning, I had the opportunity to catch up on some things for the professional association I work for. Where I found the energy to write an article is beyond me, but it is amazing how motivated I am to complete things when I know I have a very limited window of time to get things done.


Many of the nurses and our social support staff have told me that they loved receiving the fresh Hawaiian flower leis, and they are trying to preserve them. That made my day to hear this, because I really wanted to get them something special and unique. While Mattie was sleeping this morning, I was visited by an Eucharistic minister from Holy Trinity Church in Georgetown. She told me that Rev. Jim Greenfield did a guest homily at the church this weekend. You may recall that Rev. Greenfield did the opening prayer at Mattie's walk. In any case, this woman today told me that Rev. Greenfield spoke about Mattie and Mattie's walk in his homily, and said that Mattie's event was the perfect example of a community coming together to help another human being. I was touched to hear about this homily.


When Mattie woke up this morning, he was in a good mood and VERY hungry. He ate for three people. Meg worked with Mattie today for four hours. During that time, he created another wonderful story. This story is about a volcano. I snapped some pictures of the three scenes he illustrated on his own and I will give you a synopsis of the story.

Scene one: There is a peaceful city, with a peaceful volcano. Until one day, the volcano erupts. The lava goes everywhere, and a baby is almost caught by it, until a helicopter arrives to rescue the baby. As you can see the lava is running into the house and over two large gas tanks in the town.

Scene two: The lava is flowing into the city and running underneath a gym, where people are working out. You can see a person on a stationery bicycle. However, the gym floor is getting heated from the lava, and people are trying to escape up the staircase. You can see the person on the top screaming out, "Help!"

Scene three: In this part of the story, the big mama volcano is sprouting out and creating baby volcanoes, which you can see flaming from the house. The mom, on the right hand side, is screaming out, "ahhh!" The baby volcanoes are telling the house, "I am going to destroy you!"








While Meg was with Mattie, I attended a support group meeting in the clinic. It is a very awkward experience attending these groups now, mostly because my experience with Mattie is quite dramatically different from others. I felt today in particular that I depressed the others in the room. But Mattie's situation isn't a pretty picture, and on top of that statement, I am also trying to process the fact that this is our last round of chemotherapy. In addition, I am also very aware of my next immediate problem. Which is where will my daily social support for Mattie be coming from? Right now, Mattie's days can be easily occupied by Linda, Jenny, Jessie, and Anna. But I don't have these ladies at home? How on earth will I manage my days? How will I also manage my days when Mattie convalesces at home post-lung surgery? At the moment I have no answers to these questions. It is funny because one of the social workers thought I was worried about handling Mattie's nursing needs at home. However, that couldn't be further from the truth. I think the HEM/ONC nurses have taught me well, and I no longer am intimidated to deal with Mattie's medical needs, but I know Mattie's level of energy, and I also know my physical limitations. The social worker began to lecture me about the importance of taking care of myself. I listened but then told her that I used to be just like her telling clients the importance of taking care of one's self, but in all reality, it is much harder being in my situation and finding the actual way to do this. It is hard to describe what I am talking about, and I guess it is hard to relate to what I am saying unless you are actually in my position. Needless to say, I did not feel better from this support group experience. While I was attending the group, Meg called me and told me that Mattie needed me, because he wouldn't go to the bathroom unless I helped him. So I left the meeting and ran back up to the PICU to assist Mattie.

Meg continued to play with Mattie today, and I went to sit outside and have lunch. Thank you Liza May for a wonderful homemade lunch. I loved your carrot soup, salad, and cookies! It was wonderful to get fresh air too, and while outside, Ann called me to check in. I know Ann grasps how hard this week is for me on many levels.

When I arrived back at the PICU, I said good-bye to Meg, and Mattie continued to play with Linda and Katie (Linda's new childlife intern). Mattie was conducting a science experiment with water and was throwing all sorts of things in the sink to see what would float and what would make a water basin submerge under water. While in the midst of doing this, Anna, Mattie's physical therapist arrived. Anna and I discussed Mattie's right ankle. Anna wanted to know what she was allowed to do with Mattie and asked if I spoke to Dr. Bob about this. So I immediately picked up the phone and called Bob. Bob called back within minutes, and gave me sound advice. Bob suggested that we not press Mattie to do anything he did not feel comfortable doing. When Mattie is able to put pressure back on his foot, we will know that. Mattie was listening to the entire conversation I was having with Bob. I did not realize he was even doing this, but when I got off the phone, and we asked him to do some things, his response was, "Dr. Bob said I did not have to do this, if I did not feel good doing it." What a character!

Mattie had an active physical therapy session though, he rode around on a scooter, and collected plastic bugs that Linda hid in the hallway. Mattie also worked with clay and other things to get him moving his arms. Mattie will be meeting with the orthotist tomorrow and get fitted for his knee brace. It is my hope that this brace works out well, so that we do not lose ground on Mattie's right leg extension.

Tonight at 9:30pm begins the second night of his Etoposide and Ifosfamide infusion. Again it will run until 2am. So it is another long night ahead of me of jumping up and down to collect urine. We would like to thank the Goff Glennon family for a wonderful dinner. Mattie loved the macaroni and cheese from the Cheesecake Factory. Thank you for your continued support.

I end tonight's posting with two messages I received. The first one is from my friend, Charlie. Charlie wrote, "Leave it to Mattie to do the unexpected. It seems as though every time he has a treatment he finds a new way to react to it. This sort of "surprise" is one I am sure you could well do without. I am sure you felt but concerned and relieved at Mattie's sleeping through most of this but since you were not sure how it would play out, it was virtually impossible for you to get much rest. I was very impressed with the Mattie "mom mobile van." I think Mattie is telling you that you are the most central person in his life, that you carry and support him and that you provide the wheels (energy-emotional and physical) to get him where he needs to be on the road to recovery. I love Mattie's creativeness in saying it all without having to express those feelings in words; his abilities as an artist and designer have really developed this year. You and Peter have brought an awareness of the feelings behind cancer diagnosis, treatment and now moving into post treatment phase. I think the blog should be published and be mandatory reading for those considering going into the area of cancer treatment, especially those who will be dealing directly with the patient and family. So much could be gained by making the family a real part of the treatment team rather than regarding them as an encumbrance to be worked around, ignored and disregarded."


The second message is from a former student of mine, Ariel. Ariel faithfully follows Mattie's blog and recently wrote a term paper about the importance of childlife within a hospital setting to assist children with serious illnesses. Ariel wrote, "I first of all wanted to tell you how amazing the walk was...I am so happy that I was able to take part in such a wonderful event. I unfortunately had to leave early to catch a train to NY for my grandmas 80th birthday, but am so glad that I was able to be there for most of the event! It was great to meet Mattie, and I was amazed at how well he handled all of the attention. I had a few pictures that I thought I'd send along to you. The first 2 are from when Mattie was making you the mother's day crafts. I am so happy to hear that he was excited to give them to you -- he worked very hard on them and we all thought he did a great job! The 3rd picture is of the GW Human Services group that came to the walk. I also wanted to wish you a happy mother's day. I am glad that you ultimately all made it to dinner together. Even though you were hurt by Mattie's words and actions, I am happy that he ended up going and that you all had a nice time. I know situations like this can be difficult, but just remember, "[Mattie] can be mad at you, and [he] can also be snappy, but don't forget [he] always loves you" as you quoted him in your blog a little while back! Please know that you are all in my thoughts and prayers as Mattie's surgery approaches and as you continue to fight this horrific illness. The statistics that you posted on the blog and that Peter spoke about at the walk relating to childhood cancer and the swine flu were shocking to hear and I agree that they are completely unacceptable. I was so shocked and angry by what I learned and have been sharing these statistics with friends and family the past few days. When I told my mom, a pediatric nurse, the reason that Peter was given for not researching new drug treatments, she couldn't believe it. How lucky Mattie is to have you and Peter as his parents to advocate for him and to help raise public awareness about Osteosarcoma."