Before Mattie woke up, Dr. Synder came to visit me. I sent Mattie's doctors several e-mails last night expressing my concerns about a couple of things. Dr. Synder wanted to visit me personally to let me know she heard me, wanted to help, and has also agreed to take on an active role to find the right surgeon for Mattie. She is sending out letters and copies of Mattie's scans to doctors up and down the East coast. I feel the need to hear how other professionals would handle Mattie's surgery. Though I do not want to leave Georgetown, and I think the environment and the people are a known and IMPORTANT quantity, I also learned from Mattie's first surgeries, that having the right surgeon can make it or break it for Mattie's recovery and chance of survival. If I could write a want ad at this point in time, I would be asking for the Dr. Bob equivalent in the world of pediatric lung surgery.
Mattie woke up at 11am, and he was in a good mood. While Mattie was having his breakfast, Dr. Yvonne Carter paid a visit to discuss options for Mattie's surgery. She spoke very candidly about surgery in front of Mattie. Mind you Mattie doesn't know anything about his lungs, so at first I was very uncomfortable with this dialogue. But I also had the TV on, and Mattie was very focused on his show, and truly was oblivious to the conversation. However, he was annoyed that a woman was in the room and taking my attention away from him. In any case, Dr. Carter discussed a procedure called VATS, which stands for video assisted thoracic surgery. Dr. Carter feels that two out of the four lesions can be done with this technique, and she would be willing to attempt this technique with the remaining two lesions, but would need the help of a radiologist at Georgetown who specializes in wire guided surgery. The radiologist would place a CT guided wire through Mattie's chest, which would pinpoint exactly where the lesions are, and then through the VATS process the surgeon would be able to "cherry pick" out the tumors. Of course, if she is unable to do this she would have to do a thorocotomy. It was an interesting visit, of which Peter and I will follow up with a more formal meeting. So that sounded positive, however, this is one school of thought. The other school of thought is that the only way we will truly know what Mattie has going on in his lungs is by doing a full blown thorocotomy. So at the moment, I am confused, overwhelmed, but as Peter says, we have to weigh our options and make the best possible decision.
Linda came down to see Mattie right after the surgeon left. Together they brainstormed birthday decorations and things for Mattie's party in the hospital on Friday. Mattie is very excited about his celebration (though his birthday is technically on Saturday!). Denise, our social worker, also came by to visit with Mattie, and she gave Mattie a wonderful Easter gift, that was dropped off for Mattie by the Easter Bunny. That bunny certainly knows his stuff. Mattie got a lovely basket, some candy, bubbles, hidden picture books, and a robot which Mattie can take a part and rebuild. Linda gave me some time today to leave the PICU. I indeed did that, and I actually left the floor. Mind you I left while Mattie was getting his MTP-PE infusion, which should tell you what kind of state I was in. Linda has witnessed Mattie during a negative MTP-PE reaction, so I was confident Mattie was in good hands.
Mattie also enjoyed his time in the playroom, and when I got back Mattie and Linda built a large runway for his planes. Mattie also designed a control tower, and the set up was quite impressive. While I was sitting with Mattie, we also went through party decorations and had fun chatting. While chatting Mattie even ate two slices of the bread Susan brought us yesterday. With plenty of butter of course. In fact, I think if I gave Mattie a spoon, he would eat butter right out of the container. Later in the afternoon, Bob Weiman (Mattie's head of the lower school) came to visit Mattie. Together they performed a magic show for several hospital friends. I unfortunately missed most of the show since Dr. Toretsky came up to talk with me during that time. But fortunately people took pictures for me.
Left: Bob and Mattie performing their American Flag trick.
Right: Mattie performing his scarf trick solo.
Left: Mattie performed a tough ring trick on his own. I can't believe he took this trick on, since it has to be set up just right, otherwise it doesn't work!
Right: Linda, Jenny, and Sharon (our chaplain) enjoying the show!
Left: Bob and Mattie performing a new trick that Mattie just learned about a week ago!
Right: Bob surprised Mattie with a new trick. It involved flour, eggs, and so forth. Before Mattie knew it, a lovely vanilla frosted cupcake appeared before his eyes. I hear everyone sang happy birthday to Mattie, and then he devoured the cupcake.
While Mattie was performing with Bob, I had a discussion with Dr. Toretsky about Mattie's treatment. We discussed some of my recent frustrations and disappointments with Mattie's care, which I have expressed on this blog already. In addition, Dr. Toretsky and I discussed Mattie's upcoming lung surgery. Dr. Toretsky feels Mattie should have a thorocotomy, particularly the surgery that cuts through the sternum in the chest. He cautioned me about thoroscopic procedures like VATS, because he feels that the tumors aren't always fully identified and removed. So he gave me a lot to think about. Dr. Toretsky also told me, that if we did not remove Mattie's tumors in the Fall, that Mattie would not have seen his seventh birthday! That spoke volumes to me, in terms of how aggressive Mattie's disease is. However, it is times like today where I wish I couldn't read between the lines and understand people as well as I do. Dr. Toretsky did not exactly say this, but in essence the message that I sensed was that patients with lung metastasis do not have a long life expectancy, and after treatment is over in May, we will be playing the waiting game until the next tumors appear. Well that sent me right over the edge today, and believe me I did not need much to send me there. I landed up crying, and basically couldn't stop.
When I came back into the playroom the magic show was over. I tried to compose myself to say good-bye to Bob, but that did not land up going very well. Fortunately Bob was courageous enough to handle my outburst. Thank you Bob for coming today, giving Mattie the confidence to perform, and to make him feel good about himself!
After the show, Meg and I took Mattie downstairs to the physical therapy gym. Mattie had another wonderful and active session with Anna. Again, I was in tears, and I removed myself from the room, because I did not want Mattie to get a hold of what was going on with me. I took a walk outside and got some fresh air. When I came back in, I felt a little better. But shortly there after, Linda joined us as did Peter. Peter brought Kathy Brown with him. Kathy is a RCC mom, and made us dinner tonight. Peter ran into Kathy in the hospital hallway, and Kathy got to observe part of Mattie's PT session. Mattie did a tremendous amount of walking and movement all day, and during his session. In fact, Linda got Mattie to walk to the playroom from his room today, and Meg got him to walk back! Mattie loves to do PT with Meg and Linda present, and frankly when we are balancing an IV pole, the more hands present the better. I am so happy that Mattie has connected with these fine ladies, and today, I can attest to the fact that they really stepped in when I emotionally couldn't be there.
I want to thank Kathy Brown and her family for a tasty dinner, and the incredible desserts from the Dairy Godmother, an ice cream store in Alexandria, VA. Mattie loved the pumpkin frozen custard that was lumped between two ginger snaps. Delicious! We appreciate your support.
As I am writing this blog, I am home. Peter sent me home and it is my hope that I can regroup myself. However, I think my sheer exhaustion, fear, and concern for Mattie are not going to be cured with one night of sleep. I wish it were that easy. I certainly know that Peter doesn't think this is a quick fix, but I so appreciate his sensitivity to my needs. Especially when he is just as tired and worried.
Mattie will receive his fourth infusion for the week of chemo tonight. He handled last night's chemo beautifully. I will head back to the hospital tomorrow morning, and I am so happy Mattie is excited about his party. I have had more hospital personnel tell me they are coming to his party than I can remember. In fact, I have nurses telling me they are coming in especially for Mattie's birthday, even on their day off. What can you say about these women?
I would like to share a message I received from my friend Charlie. Charlie wrote, "What a roller coaster Wednesday's blog was. The definite high of Mattie doing well in therapy, interacting with friends, having a good time and taking in nourishment. All wonderful things to read about. However, on the other side, the size and complexity of the looming surgery-this is a big shock to all of us reading the blog too. I am sure Mattie will come through the surgery well but it seems so much to ask of one little boy. I am so sorry that you are facing this when we had all hoped that by this summer Mattie would be spending his time with friends and improving his walking skills through physical therapy. This must feel like quite an emotional blow-much like a punch in the stomach takes your breath. Just know that we are all here, supporting, praying, hoping for the best outcome possible for Mattie."
I end tonight's blog with a song from Cats the Musical, entitled, "Memory." It seems to capture my mood at the moment..... "Memory. All alone in the moonlight I can smile at the old days," life was beautiful then, "I remember the time I knew what happiness was, Let the memory live again."
2 comments:
Vicki,
I was a freshman in college at the time, but a dear Christian friend of mine (who later became a pedatrician) told me this about our tears - they are precious to God and God collects our tears as if in a bottle, as they are precious to him. I believe the reference is in the OT, perhaps the psalms, but I googled it now and found this RC publication: http://catholicdr.com/calendar/September/Preview%20-%20Our%20Lady%20of%20Sorrows.pdf
I also remember back in 96 when I was going through a hard time with completing the program, and stuff related to that (you remember), and another Catholic friend told me about the Sacred Heart of Jesus and took me to services.
I know you are grieving, and dealing with so much, the very least is your wish a couple of months ago to take a vacation this summer and now...
In your journey with Mattie, just remember that you are precious to God as well as little dear Mattie.
Love and hugs to you,
Mary Ann
Dear Vickie, Peter and Mattie, I read your blog first thing every morning (unless I have stayed up late enough the night before to catch it before I go to sleep). I draw on your courage to help me through each day. I tell the kids I work with about Mattie's struggles and his will to fight cancer with optimism and intelligence. He is a very smart and creative boy and uses these skills to keep him going -- the pictures are priceless. Mattie's adorable smiling face helps me to keep going when I am tired. Mattie's stories inspire the kids with whom I work to keep trying. I tell the parents I work with about the courage it takes to continue parenting even when the future is unknown. I see the power of love to keep you all working AND I see the results of the loving and wise care you have given Mattie since you were first blessed with this little boy. I know, also, the strength you each draw from each other and how fortuneate you are to have the strength and couage each of you contribute to this family. It would be a real blessing if every family fighting cancer could have the priviledge I have to gain strength from Victoria's discription of your days. Love, Martha Ozer
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