Friday, November 14, 2008

Friday, November 14, 2008

Message of the day: My friend, Charlie wrote, "I know you’ve asked in the blog why people are willing to help and reach out to you and your family - today’s quote may help explain this."
Trouble is part of your life - if you don't share it, you don't give the person who loves you a chance to love you enough. ~ Dinah Shore

It has been quite an exhausting day and I will do my best to recap it. Mattie started to have a lot of pain at 11pm on thursday. At that point his pain medication was raised back up, since it was lowered during the day on thursday. The increase in medication seemed to help Mattie a lot until 5:45am. What happened at that hour? Well a surgerical resident came in, turned on all the lights, and started talking to us, and then waking up Mattie. Mattie did not know what hit him. The resident told us he was going to take out Mattie's drainage tubes. Basically each place Mattie has an incision from surgery, has a tube that sucks out excess blood and fluid. The resident decided Mattie no longer needed these tubes. Sounds good in theory, right? Well fortunately I saw Bob take out one of these tubes from the last surgery, so I knew it involved a dressing change at the very least. There was NO way Mattie could tolerate this after being awakened and without more pain medication. So in my stupor I asked the resident if he consulted with Bob before proceeding. The resident said he hadn't spoken to Bob, at which point then, I told him the drainage tubes weren't coming out. Peter and I then dismissed him from the room, and then at that early hour we left a message for our patient advocate, Julie Andrews. Julie is a special and elegant lady, who reminds us of the famous Julie Andrews and Mary Poppins all rolled up into one. Julie came to visit me at 8am and I told her what transpired with this resident. I don't question the fact that the resident has to do his job, what I do question was his level of insensitivity in performing his job.

Mattie had a day which consistented of periodic pain, almost every two hours, he needed additional Fentanol to help relieve his arm pain. Mattie's nurse, Jane, has been on top of Mattie's pain all day, and has helped mitigate what could have been an even more challenging day. In the midst of all of this, Mattie had 'Linda time' today. Linda was kind enough to sit with Mattie this morning while Peter and I had a meeting with Dr. Shad. Dr. Shad it the director of the pediatric oncology practice at Georgetown. While we were at the meeting, Mattie had a wonderful time with Linda, and then Jenny and Jessie also came to visit. I heard they blew bubbles, and my joke with Linda is, I love when she blows bubbles in the room, because it gets the floor all wet, and literally it cleans the floor beautifully. So Mattie had moments of happiness today!

Peter and I had a very productive meeting with Dr. Shad. Denise, our social worker, was also in attendance. Dr. Shad understood our need to consult others about Mattie's treatment options post-surgery. Peter and I are finding that qualified professionals are presenting us with different treatment options mainly because the research literature is conflicted and there just isn't enough information out there about the effectiveness of these chemo drugs. Overall there appears to be a dearth of research out there about pediatric osteosarcoma treatment, and then factor in Mattie's condition, multifocal osteosarcoma, and we are talking about something simply not examined for the most part in the literature. Dr. Shad has agreed to summarize Mattie's medical case, and send it off to our colleagues all over the country and in several international locations as well. She plans on giving us a list of everyone she contacts and she will be presenting what she finds from these consultations at a November 24th tumor board meeting at Georgetown. We have asked Dr. Shad if we could attend this meeting as observers. She is checking on this for us. Peter and I both feel that Mattie's case is so unique and because of the conflicting input we are receiving, that it merits the kind of inquiry Dr. Shad is making.

After the meeting, I went back to Mattie's room, and about 30 minutes later, we had three visitors. The visitors were surgerical techs and a nurse who were involved in Mattie's surgery with Bob on wednesday. They came up to check on Mattie and to say a prayer. They gave Mattie some books, and said they will keep us in their thoughts and prayers. I found that so touching, but then again I think Mattie has a way of growing on people. After they left, Maureen, a third year medical student came to visit with me. Maureen was present during both of Mattie's surgeries with Bob. Maureen wanted to check on us, and I sensed she was more personally interested in us, than just being part of her job. We had a delightful conversation, and we talked about what life is like in the OR. She had glowing things to say about Bob, and so I can safely say I found another person to add to the Bob Henshaw fan club. The club is growing in number. I later spoke to Ann, Bob's wife/our team Mattie coordinator, and told her she had to hear what a medical student had to say about her husband. It was so lovely, and I felt that Ann should know (though I know she knows this already!) how well respected Bob is at Georgetown.

Ellen came to visit with us today and brought Peter and I lunch. Thank you! We really enjoyed the food and we know Mattie will love the gifts you brought him. Any device right now that he can engage in without too much use of his hands is appreciated! Thank you Ellen for running around getting us coffee and tea today! I also want to thank Alison, who has coordinated lunches and other things for us this week and continues to check in. Ann and Alison are wonderful coordinators and tag team well together. Again, this is a difficult week for Ann, because her husband is Mattie's surgeon. She wants to support us, but yet respects how complicated all of our relationships are with each other. Though Peter and I are VERY absorbed with what is going on with Mattie, we don't want any of our readers for one minute to think we don't appreciate what you are doing for us. We are very grateful.

This afternoon, Mattie had a visit from Chris, the fellow from the Georgetown Chemistry Club. Several Club members came and made ice cream, right inside Mattie's room. It was very neat, and we are happy to report that Mattie ate 8 teaspoons of vanilla ice cream. His only food since surgery. Chris always plans something fun, and it isn't only Mattie that looks forward to his visits! You can see a picture of the students making ice cream right at the base of Mattie's bed. Chris is the fellow holding the liquid nitrogen tank!

I had the pleasure of bumping into Miki today. Miki is one of Mattie's HEM/ONC nurses. Miki and I spoke about Mattie's 1000 cranes that were made for him this week by Kazu's family. Miki told me how special a gift this is, and the significance of the cranes in her Japanese culture. Miki then continued on to tell me how impressed she is with Peter and I. She told me under such circumstances she has seen marriages and families fall apart. But instead of breaking down, Peter and I are a force to be reckoned with. Her comment has stuck with me all day today, mainly because I hadn't thought about it. But she is right, the stresses we are under could break someone and/or a relationship down.

At the moment, I am sitting with Mattie on his bed. Mattie received more pain medication at 4pm. With the increased pain medication I am noticing Mattie is having nightmares again. Mattie wakes up scared, thinking he is seeing things, and a couple of times I have witnessed him catching himself and waking himself up out of a nightmare. Mattie seems to find comfort out of me being around and right next to him, so you can imagine I don't venture far from the room .

I received three e-mails which I would like to share with you. The first e-mail comes from Phyllis. Phyllis lives in Los Angeles and is a family friend. Phyllis wrote the following on the day of Mattie's surgery, "I think today was a very good day indeed. I know that you've been able to see God's hand in the day's progression but I wanted to give you a real, tangible example that you could cling to in times where His hand is not so evident. I composed a prayer request letter that I sent to my entire acting company of Christian actors and to my friends that I consider true "prayer warriors." I did my best to describe Mattie's situation as it has unfolded and why today was so crucial that I was reaching out to them for help. I gave them a list of five specific points to pray for. I want you to see the list so you will know how awesome our God is that He literally answers prayers verbatim-- using the same words of pronouncement as I did in my request.

Please pray:
1. For success in today’s surgery with no surprises;
2. For effective pain management after surgery;
3. For strength for Mattie’s parents, Vicki and Peter Brown, who are exhausted and facing incredible trials that are not likely to end soon;
4. For both Mattie’s near-term healing from surgery and long-term healing from cancer;
5. For the incredible support system the Browns have in place; that they may be blessed exponentially for their efforts and that their faithfulness will not wane in what is sure to be a long haul.
I see #1 being answered quite literally: A successful surgery and NO SURPRISES! And the precious nurses you described in PACU seem to be most welcome additions to your ever-growing support system; maybe we should just call all your many helpers the "Heavenly Hosts" because they are definitely a Godsend.

Regarding the mysterious feeling you experienced waiting for Mattie to come out of surgery: I might have some insight on that and you can see if this jives for you. I'm not sure if you know this, but I am a two-time survivor of breast cancer. During the surgery for my first bout with the disease, I wish somebody had been taking pictures of the procedure for me. It might explain why I awoke from anesthesia with two ruptured disks in my neck. Too long of a story to go into detail here but let's just say that another major surgery 2 weeks later to fuse my disks, 6 weeks in a neck brace, radiation, chemo and a year of physical therapy on top of being just 5 weeks into a new marriage was a tad overwhelming. Despite being a woman of faith, I found it almost impossible to pray for my situation. I couldn't focus. And yet, in some way I was insulated, almost cocoon-like, in a peaceful knowledge that for this season it was okay if I wasn't able to pray through my ordeal. Others were doing it for me. This is what I came to term as "Floating on the prayers of the Saints." You cannot ever purchase this most priceless form of transportation through time; it comes only as a gracious and merciful answer to the many prayers sent up to heaven on your behalf. I truly believe that on Wednesday you experienced the ultimate "E Ticket" ride of "Floating on the prayers of the Saints." I completely agree with Phyllis. It is hard to pray at this time, even though we do turn to God for help and reassurance. But most definitely we are and continue to float on the prayers of the Saints.

The second e-mail I received was from my friend, Susan. Susan wrote, "What great news about the surgery! Mattie is quite a trooper and inspiration as well. I believe that God gives all of us gifts that we are to use to help others. It seems that Mattie is using his gift now to reach people. How young to have so much of an impact on so many people, particularly adults."

The third e-mail came from a colleague and friend of Peter's, Tom. Tom wrote, "By the way, I noticed in one of the pictures scrolling at the top of the blog Mattie in a superman costume...I think you've got it wrong. I think superman wears a Mattie costume!" Tom, I think you may be right!

Overall, Mattie is holding his own, and many of his reactions are expected post-surgery. Such as higher blood pressure, imbalanced electolytes, pain, and the need for oxygen. There is just so much to balance, and even more to worry about for saturday, as this will be Mattie's first day out of bed since surgery. As a mom, I worry about pain. Bob is trying to help me understand that some pain is good. But I guess none of us really like to see our child in pain. Bob will be doing a dressing change and removing drainage tubes on saturday morning.

Thank you for all your e-mails and messages of support through this challenging time. I did want to thank my lifelong friend, Karen in NY. She contacted Father McManus in Scarsdale, NY. Father McManus was the priest who confirmed me in the Catholic religion and even married Peter and I. Karen told Father McManus about Mattie and what our family is struggling with. It is nice to know that the congregation at Our Lady of Fatima, where I grew up, is also praying for Mattie. Father McManus called me tonight as well. Thanks Karen!

We want to thank the Kane family tonight for a great dinner. Thank you for supporting us through a challenging week! Tomorrow should prove to be an interesting day! I end tonight with two quotes I received today. Thanks Charlie and Susan!

"The greatest healing therapy is friendship and love." Hubert Humphrey

"Loving is half of believing." Victor Hugo