Quote of the day: "Ready, set, hope!" Thanks Denise T. for this great quote that came from the Breast Cancer walk!
Peter gave me the luxury of sleeping at home on tuesday night, as I am still trying to recover from not feeling well. As I was driving to the hospital this morning, I wondered how the meeting with the doctors and Mattie's care team was going to go. Peter and I went to the meeting armed with a bunch of questions. You may be asking who was present at the meeting? Well here you go: Dr. Bob Henshaw (Mattie's surgeon), Dr. Jeff Toretsky (Mattie's oncologist), Dr. Kristen Synder (part of Mattie's oncology practice), Dr. Matt Beales (child psychiatrist), Linda Kim (Child Life Specialist), Jenny Padden (Art Therapist), Jessie Masterson (Art Therapist), Anna Fragomeni (Physical Therapist), Denise Garner (Mattie's Social Worker), and Nicole Droog (Pain Management Nurse practitioner). Bob stayed for over thirty minutes answering all our questions about pain management, how Mattie's arm would be wrapped post-surgery, what type of mobility to expect from Mattie, and a host of other questions. Bob let us know that he is already planning Mattie's second surgery and he is targetting November 12. Just in time for Peter's birthday on the 13th! Quite a gift, don't you think? But I guess if Mattie can be diagnosed with cancer on my birthday, it seems fitting based on the kind of year we are having that Mattie should have surgery around Peter's birthday! One thing was clear to me today, this team approach was VERY helpful. Peter and I assumed such team meetings were happening behind the scenes. But we learned that it doesn't. Fortunately I spoke to Dr. Shad (the oncology practice director) this week, who told me I am entitled to this type of coordination of care and helped get the ball rolling. I continue to learn strategies and better ways to advocate for Mattie, and the more people I talk to, the more ideas I get.
After Bob left the meeting, the rest of us stayed for 90 minutes more. I first have to say that Peter and I are blessed to have such outstanding support staff behind us. Where we would be without professionals like Linda, is beyond me. She helps Mattie, advocates for him and us. Today I burst into tears during the meeting, and she came and sat next to me and comforted me (NOTE: I don't want you to think I cry at the drop of a hat, but when you hear about the length of the incision on your child's beautiful body, the pain he will experience, his level of permanent immobility, and then add to that an additional surgery so soon after, which will result in Mattie having three limbs basically immobilized and producing a very unhappy six year old who won't have use of his arms and leg for quite some time until it heals, well it is HARD to take!). Linda is an incredible person, and though not trained as a counselor or mental health professional, I am thoroughly impressed with her insights, her skills, and her compassion. In addition, I found Denise's presence and guidance for in home care and support, very valuable. What helped me was Linda and Denise understood where Peter and I were coming from. They understand our need to know, to prepare, and to prepare Mattie for what is coming next week. I continue to be plagued with physicians. I am not sure why many of them can't understand my desire to prepare Mattie for the surgery. Basically I feel it is my responsibility as a parent to let Mattie know that post-surgery he will have pain (which we will be able to manage medically) and be uncomfortable. In addition, I also feel it is crucial that he knows he wouldn't be able to move his arm for a while post surgery. Mind you the psychiatrist feels that this information about pain and mobility shouldn't be shared with Mattie. Everything I am reading in the literature speaks to the importance of discussing pain with your child and what to expect in a developmentally appropriate way. My feelings were further verified today after listening to Mattie chatting with Linda and Dr. Toretsky. Mattie wanted to know why all his tumors can't be removed at one time, and then questioned Linda when she showed him the PCA machine (Patient Controlled Analgesia). Mattie did not get why he would need this pain management system post-surgery. Sure, why would he!? No one is talking to him about pain and immobility. Mattie thinks he will have surgery and the next day will feel great! I discussed this with Linda tonight, and I am going with my gut and my own clinical experiences. I won't scare Mattie as I describe what to expect, but instead prepare him so he isn't scared when he wakes up from surgery in pain and unable to move. Mind you his arm will be immoblized for three weeks! I think as a parent you have to make tough decisions. I can't live with not preparing Mattie, because what this sets up is a bad dynamic between the two of us, if I don't tell him what to expect, then why on earth should he trust me in the future? Because I know darn well he will be in pain and feel very frustrated that he can't move his arm for three weeks. I think it is not giving him much credit to think that such prep work won't help him during the recovery process. Yes he is six, but none of us like to be unprepared for major events in our lives. The lack of preparation is what is frightening, sometimes more than the event itself. Thank you Linda for setting up some surgerical supplies for Mattie to play with, for giving us a practice sling, and for showing us the video about what to expect in an operating room.
In fact, Dr. Toretsky came to Mattie's room today to do a playdough model of Mattie's arm, and then he did a little incision in the arm and placed a new bone in the arm. Dr. Toretsky was modeling what would be happening to Mattie on monday. While he was watching this Mattie wasn't startled by this at all, why you ask? Because I have used the analogy of bone bugs with Mattie from day one. I have been slowly explaining to him that the chemo kills the bone bugs, but the bugs are clever and have created little burrows or homes inside his bones. If the homes aren't removed, then new bugs can come and set up shop again. So therefore, to get rid of ALL bugs, you have to deal with their homes, which means surgery. Therefore, Mattie gives me every indication that the more prep work we do with him, subtly of course, WORKS!
While Peter and I were in the meeting, Mattie was in the childlife playroom with Lesley and his buddy, Brandon. When I came in to check on him, I found Mattie had created an amazing airplane hangar, a control tower, and runway. Below you will see some pictures of his structure and a picture of Mattie and Brandon.
Mattie had some special visitors today. Liza May came to visit. Liza is a SSSAS parent at the upper school. Liza brought with her Katie, her daughter and Katie's friend, Louise (also a SSSAS student). Both Katie and Louise are seniors and had today off from school. Instead of spending the time enjoying the glorious weather, they chose to come and visit Mattie. Liza tells me thatMattie and my family are having a profound affect on her family. Katie is a remarkable young lady who is generating fundraising ideas to help Mattie. I am so impressed with Katie and I admire her determination and compassion, and I have to say, I am not sure I was this together when I was 17. Katie inspires me and gives me a great deal of faith in our younger generation. Thank you Liza, Katie, and Louise for your wonderful visit, and Mattie thoroughly enjoyed the hotwheel cars and the Dunkin Donuts! He shared his donuts with his buddies in the childlife room and there was a lot of happiness in the room today! Below you will see a picture of Mattie with Katie (on the right in green) and Louise (on the left in blue)! Liza the fudge is incredible! I am typing and eating it at the same time.
At lunchtime, Alison came to visit us and brought lunch. Thank you so much for a very tasty lunch and for watching Mattie so that Peter and I had the opportunity to go outside, chat, process the doctors' meeting, and eat. The gift of time to connect is precious to us, and Alison is becoming another good buddy of Mattie's. Thank you Alison for the vanilla shake and the happy meal. I see vanilla shakes are back in style! Who knew.Today, Peter and I had the opportunity to talk extensively with Anna, Mattie's physical therapist. Anna is a VERY special individaul and she is very motivated to help Mattie regain as much motion as possible. Anna understands Mattie's personality and she realizes she has to work on becoming part of his life, before actually working on tasks with him. Anna spent a great deal of time with Mattie today, and will meet up with us tomorrow too. I feel like Anna will be a very vital part of our treatment team. I am happy Peter took the day off from work. This wasn't his initial intention today, but the morning meeting was intense, and when you get knocked off your feet, it takes a while to restabilize.
I left the hospital today at around 6pm and bumped into Dr. Allison Lax. Allison is Mattie's radiologist. Allison is delightful and we talked about Mattie's MRI and PET scan results. Allison is also expectating a baby, and we talked about how difficult Mattie's situation is to handle as a parent, and she reflects on how she would feel if this was happening to one of her daughters. I also bumped into Stephanie Zimmit too before leaving. Stephanie is a friend of JJ (our resident Jack Russell Terrier). It is scary when you know people on almost every floor of the hospital!
Thank you Jenny for coming by tonight to do a project with Mattie. I am sorry I missed you! Jenny has a smile that just makes you feel better. We all need such an art therapist in our lives! Thank you Rana and Melissa (from Voxiva) for stopping by tonight to visit Peter and Mattie and for bringing dinner! They appreciated your visit. Peter called me too, because I missed a visit from our favorite volunteers tonight, Jerry and Nancy. I missed singing with them. It is the highlight of my week! Jerry gave Mattie his own electric keyboard to keep tonight. I am not sure what you say about someone so generous and caring. Jerry's music brings such joy in our lives, and this additional gift just further illustrates how special he is. Thank you Jerry!
I would like to share two e-mails with you tonight. One is from Tad Ferris (a friend and parent of Mattie's SSSAS buddy, Kazu) and the other is from my colleague, Susan H. Tad said, "Know that you have this when all seems bleak, your extended "family" watch over you every day. Just for you and Pete--I cannot speak except as a father of a boy Mattie's age, a cancer survivor, and based on what I clearly recall of my mother's courage and care for me during my cancer and other illnesses, and even during her own battle with cancer. However, drawing from this, I can say that you are an example for all mothers facing these challenges. I am so glad Mattie has you and Pete at his side. I know in my heart that my own mother, if she was here with us now and sharing our experiences with you, would say how proud she is to know you and Pete."
Susan H. wrote, "Vicki – please use this if it will help Mattie. Although I didn’t have bone cancer, just some heavy-duty knee pain due to an injured, worn-out knee, maybe Mattie can relate to some of this in his own way."
Interesting Stuff About Getting New Bones
(Written by someone ten times older than Mattie, but who can be just as scared and uncertain. Age doesn’t matter when it comes to fear!)
1) I didn’t want a new bone, but I had to get one to make myself healthier.
2) I was afraid to give up my “birth bone” and have surgery, but my “birth bone” had bone bugs.
3) My new bone is healthy and doesn’t hurt.
4) My new bone can’t get bone bugs. It’s “superman” strong.
5) I feel happier and healthier and can do things I couldn’t do when I was hurting so much because of my “birth bone bugs.”
6) Nobody can tell I have a new bone. No one can see it, feel it or hear it.
7) Even I can’t tell I have a new bone. Even though it’s metal and ceramic, it feels very real to me. The only time I know it’s not real is when I go through an airport x-ray machine and the buzzer sounds.
8) The new bone will last a long, long time.
9) I’m not going to be as scared now when I get my next new bone. Even though it hurt right after I got it three months ago, it doesn’t hurt at all any more, and I’m happier. So now I’m getting ready to get my next new bone, and it will be okay too.
On the electronic front, I want to thank Allen and Brian Boru for your e-mails and Karen, Kim, and Lorraine for your great e-cards. I end tonight by saying, OH MY GOODNESS! Have you been following the current hit count on Mattie's blog? In just a matter of days, we are up to over 1000 hits. Thank you all for always checking in and for all the support.
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