Thank you Grace for tonight's wonderful quote:
There's an old Winston Churchill saying, "kites fly highest against the wind, not with it." Grace says, "And you epitomize that in spades." Thanks Grace!
I am not sure how else to describe today other than, it was an emotional rollercoaster ride. Important note, I don't like rollercoasters, real or imaginary! Mattie woke up this morning in a good mood, but wanted to have computer time with me before venturing out to the childlife playroom. Though I was hungry, there was no way I was going to eat anything in front of Mattie, since he needed to be NPO (one of my least favorite acronyms which in Latin translates to "nothing by mouth") for his MRI scan at 1pm. After we played together for a while, I encouraged Mattie to go to the playroom, so that he could do an activity and see some of the other children on the floor. Mattie heard that his big buddy, Brandon, was back, and that was a motivator to go to the playroom. Brandon is a delightful 18 year old fellow, who has a calming, humorous, and well grounded personality and demeanor and Mattie and I have enjoyed getting to know him and his mom this week.
Mattie was busy in the playroom, painting a small wooden locker he built. You can see the pictures below of him hard at work. I find it particularly fascinating to watch the dynamics in the room, and how the children are affected by each other. Somehow they motivate each other to take on projects and to participate and to engage in activites. The social component of this childlife playroom is so healing. There is a good spirit in the room, and though I sound like a broken record, this is such a crucial addition to the floor.
After his time in the playroom, he went back to his room and got ready to head down to the MRI scan. However, today, unlike all the other days, Mattie told Debbi (our sedation nurse/angel) that he did not need any medication to head downstairs. Typically Mattie gets so nervous about scans that he doesn't like leaving his room without being medicated. But today he elected to be awake for the whole trip down to the MRI. We were so proud of his decision and even more impressed that he was taking an active role in his medical care. While Mattie was in his two + hour MRI, my parents took me to lunch at the hospital. Food at this point was VERY necessary!While we were awaiting Mattie's arrival back to the room from the MRI, Dr. Bob Henshaw came by to visit. I started to talk with Bob about Mattie's upcoming surgery. I found out that Mattie's first surgery of his right arm is scheduled for October 20. Yes that is correct, 10 days from today. Wow! That kind of hit me like a ton of bricks. Basically there will be NO down time for Mattie, since next week he heads to his second round of Methotrexate, which will then be immediately followed by surgery the following week. As I continued to talk with Bob, I wanted to hear his reaction to Dr. Healey's advice at Sloan Kettering. Bob mentioned a lot depends on the PET scan results from this week. Bob continued by saying if more tumors popped up while Mattie was on chemo, then he would need to reassess whether such an aggressive approach was worth pursuing. Bob delivered this news in the best possible way, but none the less this was hard to hear and soak in. I think I have been in denial about these scans. I thought the scans were going to reveal more information about the four tumors under treatment, but I never focused upon the fact that more tumors could be developing in the process, and thereby indicating that chemo wasn't working. I have a feeling Bob could tell that this perplexed me. Bob then went to a computer to see if he could look at the scans himself.
This is the beauty of having someone as qualified and experienced as Bob in our corner. Literally 15 minutes later, Bob handed me a print out and told me that everything looked good. That he evaluated the PET scans and the MRIs from thursday and he was pleased with what he saw. Or what he did not see, meaning there were NO additional tumors. When I tell you that myself and my parents landed up crying from relief, I am not kidding. So basically now I cry for any reason. I cry when I am sad, mad, upset, and happy. So if you see me crying, I am just giving you a heads up, it may not be for one specific reason, or for the reason you think. I really appreciated Bob stopping by and spending the time to give me his professional evaluation. It is moments like these that we savor and hold onto tightly.
Mattie came out of the MRI sedation like a champ today. Even faster than on thursday. He snapped out of the sedation in a good mood and somehow less disoriented and scared. In fact, within 30 minutes, he was insisting on eating. He ate pasta and a whole bag of goldfish! It was wonderful. In the midst of eating, Mattie's bloodwork results came back, and revealed that his Methotrexate level was .09, which meant that he could be released from the hospital. In order to pack up, I brought Mattie to the childlife room, where he played with Lesley for a while, until he had to come back for a vitals check and examination. Dr. Toretsky also stopped by to share with us some additional insights about the PET scan results. Positron emission tomography (PET) is an imaging test that uses a radioactive substance to look for disease in the body. The PET scan shows how organs and tissues are functioning. Dr. Toretsky showed Mattie a simplified chart which indicated that in all four tumor locations the level of glucose activity has decreased from August to October. This seems to be a positive sign that the chemo is working at killing the "bone bugs." However, with bone cancer nothing is definitive, until you actually remove the bone from the body and do a pathology on it. But on all counts today, the news we received seems to imply that Mattie's body is responding to the chemo. We appreciate the fact that Dr. Toretsky wasn't leaving for the day without informing us of these results.
While Dr. Toretsky was talking with us, we had a knock on our door. Peter's family (mom, brother, sister-in-law, and our two nephews and neice) came to visit us from Boston this weekend. Mattie was very excited to see them, and literally every family member carried out a part of Mattie's room and loaded it into our car. Fortunately Linda stored Mattie's bigger items in the playroom, so we did not have to take them home just yet. While at home, we upacked and Mattie had a good time playing with his family. You will see some pictures below. In addition, I am unveiling the FAO Schwarz Lego creation. Mattie finished it with the help of his cousins Nat and Will. I told Mattie if such a beautiful hotel really existed, I would be thrilled to stay in it.
Left: Mattie and Will
Right: Sydney (by the couch), Will, Mattie, and Nat
Mattie's Lego Creation - his special gift from FAO Schwarz
On our way out of the hospital tonight, we had a lovely visit from Dean Janet Heddesheimer from GW. I fondly remember Janet and I talking about our sons, who have a lot in common, when I was a student at GW. Janet has been incredibly supportive of Mattie and my family through this ordeal, and she delivered us a wonderful chinese food dinner and an unbelieveably generous Halloween treat bag. We are still opening up the gifts from the bag, but they are bringing a smile to Mattie's face! Thanks Janet, and I wish we had an actual moment to talk, but in the midst of being released from the hospital it was thoroughly chaotic.
When we got home tonight, we had a nice family dinner, and enjoyed Janet's food together, and the kids got an opportunity to play together. We look forward to this family time on saturday.
My mother-in-law, Barbara, shared with me a special card and the proceeds she raised from a "Mattie Matters" yard sale she hosted in Boston. This sale generated $5000, and it is amazing how Mattie's story has touched the lives of people in Boston as well. In addition to receiving this special gift, I also happen to like the slogan "Mattie Matters" and am working with Carrie on seeing how we can incorporate this into the Mattie wristbands that GW's Chi Sigma Iota Honor Society is creating for Mattie. Thank you Lisa and Chris for the wonderful legos, and we thank Lisa's friend, Lesley, for the three in one creator set for Mattie!
I want to thank Harriet for adding Mattie to your prayer list at the Grace UM Church in Millsboro, DE and to our cousins Maria and Peter for sending Mattie a special little angel to watch over him. I leave you tonight with two e-mails I received today. The first one is from a person I have never met, but he lost his dear son to Osteosarcoma, and now he has found the inner strength SOMEHOW to walk this path again with us. Bill read my blog yesterday, and he sent me a funny e-mail today. He suggests I get "crime scene" tape and place it all over Mattie's hospital door. He figured that would cause a person to think twice before entering so we could get some rest! The second e-mail is from our friend Grace. Grace wrote, "You and Peter are such a wonderful team together. Of course, I always knew this; whenever I saw you together, you complemented each other so well. But they always say people's true colors come out when in crisis, and your wonderful, nurturing, kind ways remain the same, if not elevated, now as always. Mattie is so blessed to have you as parents. In this most terrible time, I see such joy in his face. It just radiates through the photos on your blog. And this is all because of you and the wonderful environment that you create for Mattie. I see a happy little boy in these photos, and you and Peter are to be commended for providing such joy in such difficult circumstances. I had to share Christopher's thoughts with you. He is very much into Halloween this year, and last night he paused in the midst of his Halloween excitement and said, "Mommy, we should do a Halloween message and prayer for Mattie-- so he can get better." Thank you Grace and of course Christopher for thinking of Mattie!
I sign off tonight, assuring you that we are thrilled to be home for three nights. It is my goal to get rid of this cold and congestion before monday! But most importantly thank you for all your thoughts, wishes, and prayers. I feel all this support is helping and who really knows how this support is ultimately impacting Mattie's survival? Afterall, this type of support is so tremendous but not easily quantifiable. The support we receive isn't something science can understand or necessarily explain but I know it is powerful and with God and those around us, anything is possible. Today's scans prove that to me.
2 comments:
Hi!
I'm so glad to hear of the positive PET scan reports!
I can really relate to the crying thing. I was raised in a very reserved family and am very reluctant to cry in front of others and other than when Emma was first diagnosed, I didn't; however, I found that anytime I was alone in the car I cried throughout the entire journey short or long. I think the crying is normal, so don't let the fact that you cry a lot bother you. All we mothers cry a lot.
I'm glad you got a Tuesday surgery date. The period right after surgery is a critical one and it is good that Mattie's is early in the week. Emma had two surgeries on Fridays and I hated it; the regular staff goes home for the weekend and you get to deal with unknown people during that critical time. Tuesday is a great surgery day because everyone will be around for the rest of the week.
If you get a chance, you might ask the staff about their plans for post surgical physical therapy. Emma's first op was on her leg, not an arm, so I don't know what this will be like for you, but for us it turned out to be an issue. The physical therapy plan included using a continuous motion machine to move Emma's knee. This is a scary looking thing that freaked Emma out. It was painful to try to adjust it onto her just operated on leg and it turned out not to fit properly. Two different, smaller machines were summoned that also hurt Emma to try and didn't fit. Finally it was established that she was just too small to use a CPM machine. It would have been so much better to show Emma the CPM machiine before the surgery when she wasn't in pain and make sure it fit then. Also, Emma responded so much better to the physical therapist she already new pre surgery than to the one that she only met in the hospital after surgery. Physical therapy isn't that pleasant sometimes and it works better if the child has a relationship with the therapist prior to when that therapist has to cause them pain. The hospital just wasn't very good about considering the emotional elements of these types of issues. I think it might be helpful to you to ask specifically about what the post op physical therapy procedures are going to be like so that you can prepare Mattie.
As far as surgery itself goes, the one thing that is critical is the pain control. I was really tired after Emma's second lung surgery and she seemed so peaceful that I slept and when I woke hours later found her laying on soaking wet sheets. It turns out that the epidural pulled out and nobody thought to check for this. Her sheets were wet with her pain medications. When she woke up it was awful. The pain is so much harder to get under control when it has spiraled out of control than to keep in control in the first place. In contrast, after Emma's leg surgery, the staff was excellent about monitoring the epidural and pain stuff and Emma experienced much less pain than we thought she would. Her leg surgery actually bothered her less than some of her chemos. So, I would make sure I understood what will be the plan for pain after surgery and would monitor whatever this is myself. For instance, I would have no qualms whatsoever about requesting that staff check the epidural from time to time if they don't do so on their own volition. If your hospital may even have a special "pain" team or doctor. I would ask for the pain team early on if you have any concern aout Mattie's pain level.
Once again, I'm so glad that Mattie's PET scan was so good. I happened to Google multifocal osteosarcoma at one point and read a research article about one case where the subject was cancer free for 19 months at the time of the article's publication and the article also mentioned another case where the person had been cancer free for years. Complete surgical resection is just very critical in osteosarcoma.
Keep up your spirits and get rest when you can.
Lauren
Dear Vicki, Peter, Mattie, and families,
CONGRATULATIONS on getting such encouraging PET scan news! Definitely something to celebrate!
It is also great news to know that Mattie is back home, is doing so well bouncing back from the sedation, eating, and being able to play and create in the new healing playground at Lombardi.
May all your tears of joy and relief for all this positive news wash over all of your throughout this sunny weekend, along with your family down from Boston.
Love, Lorraine
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