Quotes of the day (Thanks Alison and Charlie!): "A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. But...there is no word for a parent who loses a child, that's how awful the loss is!" ~ Neugeboren
"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight." ~ Kahlil Gibran
Today was another emotionally draining day! Thursdays are typically our MTP-PE days. However, we have stopped this experimental treatment because it clearly was ineffective for Mattie. Funny how I thought these clinic days were a hassle, but now I long for these days, where it still meant that we were fighting the disease. Amazing how your world can change over night. For us we have experienced this profound change twice, once on July 23 (when Mattie was diagnosed) and then on August 5 (when we learned Mattie's cancer spread all over). But with regard to MTP-PE, I always had great reservations about this treatment to begin with since the literature was sketchy at best about its effectiveness. But when you are a parent in a desperate situation, you try anything in hopes that it will actually do something for your child. I personally feel the principal investigator of this study needs to be put down a peg or two (remember Peter and I met him at Sloan Kettering), because in the end, scientific research is so limited. It is based on numbers and data, all of which can be manipulated, and more importantly it doesn't take into account the subtle differences between cancer patients and their disease. Clearly Mattie's form of osteosarcoma doesn't compare to others, and in the end, Mattie was really being treated using the standard of care designed for a patient with a single osteosarcoma lesion. Mattie had multiple sites to begin with, but there is no protocol to follow for a case like his. From my perspective, the practice of medicine has a long way to go, and I think it is unacceptable that we still don't have effective treatments for certain forms of cancer. This is usually Peter's platform, which he is so good at advocating for, but when you are losing your child to a disease, you can't help but be bitter at a system which has failed you and your child.
Peter and I took Mattie to the Lombardi clinic, since we had a meeting with his doctors at 2:30pm. When Mattie got to clinic, Jocelyn and her two sisters, Hannah and Meghan were there. Mattie has a special bond with Jocelyn (a young adult with osteosarcoma), and they jumped into a project together. Jenny and Jessie (Mattie's art therapists) were also very engaged with Mattie, and what gave me peace today was that Mattie had a great day in clinic. He was like the life of the party. I could hear him through the door of the meeting room. When we arrived at the clinic, Jessie told me that they wanted to support Peter and I in any way today during the meeting. I told her, not to worry about Peter and I. What I did want them to worry about was making this a happy day for Mattie. When you see the pictures that Jenny and Jessie took, you will see they far exceeded my expectations. He had a great day!
Mattie was also visited by three of his HEM/ONC nurses from the PICU today. Thank you Katie, Sarah Marshall, and Kathleen for coming down to hug us and to visit with Mattie. Your support means a great deal to us. Dr. Shad told me today that half of the PICU was crying over the news about Mattie. Mattie has a way of working his way into your heart! I know that well. Mattie teamed up with Jocelyn and designed a boat, and Jocelyn's sisters were the opposing team. I hear they had a great time designing and racing. Naturally you know who won the race?! Mattie was thrilled to win a prize. Thanks Jenny and Jessie! You brought a smile to his face today, and he relived the excitement for us in the car ride home.
Left: The team is working on boat designs. Going from left to right is Meghan, Hannah, Mattie, and Katie (one of our wonderful HEM/ONC nurses)
Right: The boat designing continues! Featured from left to right is Meghan, Hannah, Mattie, and Jocelyn.
Left: The dynamic duo! Jocelyn and Mattie!
Right: Mattie standing and VERY excited about the pending race! Mattie was excited about the new big bin for water that the clinic acquired.
Left: Jocelyn giving a little wind help to the Team Mattie boat!
Right: Mattie and Jocelyn's boat!
Left: The proud winners of today's race!
Right: Mattie and Roxanne (his favorite nurse in the Lombardi clinic). Mattie is holding up his prize for winning the race!
Left: Peter and I got back from our meeting with a Cyberknife specialist, and Mattie grabbed us to show us his prize. Peter and I were in shock with everything discussed today, and you can probably see this in our faces. Sitting on the floor next to Mattie is Kathleen (one of our fabulous HEM/ONC nurses from the PICU).
While Mattie was having a great time, Peter and I were having a heart wrenching conversation with Dr. Synder, Mattie's oncologist, and Dr. Shad, the Director of the Lombardi Pediatric Clinic. Dr. Synder was clearly heart broken today, and cried with us. I think all of Mattie's doctors are stunned HOW FAST this cancer came back and came back with a vengeance. In fact, Dr. Shad told me that Dr. Chahine (Mattie's lung surgeon) was truly upset about yesterday's news, since only two months ago he removed every lesion possible from Mattie's lungs. I have no doubt he did an excellent job. But Mattie's body had other plans. Dr. Synder presented Peter and I with various options to consider. All palliative care, meaning care to help keep him comfortable and without much pain, but certainly no options are left for a cure. So here was what was presented: 1) we could do nothing and let the disease take its course. If we select this option, with the level of aggression of the tumors, Mattie will most likely have significant pain by next week, and would only have a few weeks to live, 2) we could give him a different form of chemotherapy, however, this chemo would hopefully shrink or kill off the tumor, which sounds good in theory. But remember this isn't for a cure, the only true way to cure osteo is to surgically remove it. This is NO LONGER an option for Mattie because he has SO many tumors in his liver, lungs (over 20 in the right lobe alone), and behind the rib cage (a huge tumor over 2cm in size). So if we gave him chemo, he would become neutropenic, lose his hair, have nausea, and all the other risks associated with chemo. So why bother with this option? It doesn't provide a cure, and is only going to make him uncomfortable and prolong the inevitable. 3) The third option is to treat the liver and tumor behind the rib cage with radiation, cyberknife to be specific. So we met with the chief of the cyberknife department at Georgetown today. There are no adverse side effects to this treatment, and it would target the tumors, and hopefully shrink them or kill them off. Which would clearly help manage Mattie's pain. At the moment, the pain is becoming more intense for Mattie, and Peter and I have him on a Fentanyl transdermal patch and morphine. We are concerned about pain, and if Cyberknife can buy us more time, and give Mattie more comfort and a decent quality of life, then this seems like the best option. 4) The last option presented was going to MD Anderson in Texas and meet with a surgeon who specializes in removing tumors from the liver. That is all well and wonderful, but again what for? The cancer has spread to other inoperable areas, so to me doing surgery on Mattie without the promise of a cure is cruel.
Peter and I decided to treat Mattie with Cyberknife and this will begin next week. We have no time to lose. We have to shrink the tumors right away, before we lose the fight against pain. Before Mattie can undergo this procedure though, he will need to have all the fluid that has accumulated in his lungs removed. Because Mattie has tumors throughout his lungs, they are causing fluid to build up, and in fact his lungs right now are 1/3 filled with fluid, and his doctors have asked us to watch for shortness of breath. If this happens, he will need to be admitted for this procedure right away, and this involves putting a needle through his chest cavity to remove the fluid. I don't like the wait and see method at all. So I said NO, I am not waiting for him to have shortness of breath, I want the fluid out ASAP. So we are scheduling that for Monday, and it is my hope that Dr. Chahine can do this procedure for Mattie. I have embraced Dr. Chahine as part of our treatment team, and feel more at peace with him performing such a procedure. So in summary, Mattie is being admitted to the PICU on Monday. He will spend all of next week in the hospital. During that time, he will get the fluid removed from his lungs, they will start him on TPN (which stands for total parenteral nutrition). This nutrition will be IV, and go through Mattie's central line. The nutrition will contain vitamins, proteins, fats, and electrolytes. I have been opposed to this for quite some time, but I realize this is crucial now to Mattie's health, especially since he is unable to intake things by mouth. In addition, Mattie will need to undergo several CT guided procedures to have these "gold seeds" placed by his liver and rib cage. Apparently these gold seeds guide the robotic cyberknife machine to deliver concentrated forms of radiation to the appropriate sites. Mattie will then undergo three days worth of radiation. So this is the aggressive plan for next week. Mind you we have elected that Mattie be sedated for all Cyberknife procedures, since it involves a machine, sitting still for an hour, and without my presence.
Dr. Synder and Dr. Shad also spoke with Peter and I about hospice versus palliative care within the hospital. Hospice of course involves pain management and dying within your own home, and palliative care in the hospital means living within the PICU, and getting treated for pain and dying there instead. Peter and I are all over the place with this issue. I am torn. I love the HEM/ONC nurses, and I know they could provide us not only with excellent care, compassion, and support, but I also fear that Mattie won't be surrounded by his things and his cat in his last days on this earth. It is a very difficult decision, of which I am not ready to make, nor do I wish I had to make it.
After our visit to the clinic, we then took Mattie to the Lego store. Peter and I both felt like walking zombies, but we know Legos bring Mattie great joy and comfort. Here is the only positive thing in parenting a child with a terminal illness, the typical rules and boundaries that you have to set up to raise a responsible and morally minded child, NO LONGER apply. I can spoil him with whatever his heart desires, and not feel a bit guilty about that. That is where the positives end, though I am still Mattie's parent, and will always be, I am now foremost his friend and confidante. Pending death takes relationships to a whole other level of depth and dimension. On the ride out to the Lego store, I sat with Mattie in the back seat. At one point he grabbed my hand and told me that I promised him I would never leave him, and yet I did. I just looked at him dumbfounded. He then reminded me that last week at the ABBA concert, I went down closer to the stage with Abigail and left him alone. Certainly not alone, he was with Peter and Ann. But in his mind I abandoned him. He asked me never to do that again. Again, if Mattie was a healthy child, I would have to explain that this was a ridiculous request, but now, I certainly don't! He told me he loved me and always wanted to be with me. I told this story to Ann tonight, and she seemed floored by this conversation. I did not think about it this way, but perhaps she is right and that on some level Mattie feels that something is going on with his body, and he is telling me in his own way he is scared, and doesn't want to leave me. Needless to say, Mattie's tenderness, captured my heart tonight, and as Peter says all the time, how on earth are we going to recover from this devastation? I don't know! I really don't know. Last night, I told Ann, that without Mattie my purpose and meaning in life is gone. Ann responded back by saying that this wasn't true. That my life alone is very valuable and my presence is needed not only by Peter but by all those who touch my life. I told her she may need to remind me of this on a consistent basis, because right now, Mattie is my life, and I can't picture a life without him. I can't picture a life without being his parent, and a life where I can't see him grow up, and be a part of his life.
This evening Mattie was VERY busy. He built one of his Lego acquisitions. It is a cargo plane. I snapped a picture of Mattie with the plane. In addition, Mattie had Peter set up a HUGE camping tent in our living room. I have now lost sight of both my living and dining rooms! They are camping out tonight inside the tent, IV pole and all! I went down at 12:30am, to visit with them, because Mattie wasn't going to go to bed without chatting with me. In fact, Mattie wanted me to lie next to him for several minutes, and I have noticed that he really needs more emotional connections lately. Any case, he looks very cozy in this tent, and he has already established that I am sleeping in the tent with him tomorrow night! Lucky me! We want to thank the Ferris family for providing us with a wonderful dinner last night and the McSlarrow family for a lovely and generous dinner tonight. We value your support and love!
I do want to acknowledge ALL the amazing e-mails I received today. I must have received at least 100 personal e-mails. They all mean a great deal to me. Some of you even e-mailed me at 2am. Normally I would have been up, but the beauty of Tylenol PM, helped me to sleep last night. I wish I could post every e-mail I received, but I would like to share seven messages with you tonight. The first message is from my friend, Charlie. Charlie wrote, "I so hoped you and Peter would have more time with Mattie. I really am at a loss for words and so all I can say is that I sit in sorrow and silence with you at this time. I've forwarded the news on to those I know who have been praying daily for Mattie as I know they will want to continue to pray for all of you now. As always, you are his mom and you knew even without the tests what was happening. Give yourself some time to absorb the news and shift gears; there is no formula for sorrow. Vicki and Peter, I grieve with thee."
The second message is from a fellow RCC parent and friend. Mark wrote, "I am up late tonight and just read your blog posting. Grace is asleep and I am trying to decide if I should wake her to have her read your very sad news. Our hearts have ached for both of you and Mattie throughout this entire horrible ordeal. You have fought so valiantly for your son's life and every decision you have made along the way were the only decisions you could have made -- you gave your son every chance that God and humanity could provide and you had another year of life with him. It has been a year filled, yes, with pain and sadness ... but also with much love and beauty and memories and laughter and achievements and milestones and teaching and learning and hope and strength. You have brought countless people together into a shared journey, united by the spirit and perseverance of a small boy who has taught us all something very big -- he has taught us how to live. We will stay with you through the rest of this journey and beyond. Mattie will forever be the sun rising in a brilliant splash of yellow, red and orange. Nothing changes today. We are with you and we are with him. Always. With the greatest respect, friendship, admiration, and awe."
The third message is from a fellow RCC parent and friend. Grace wrote, "There simply aren't adequate words, but I must try. Never question how you chose to fight this disease. From the start you have had the best gut instinct I've ever seen; know you did everything right. How could you not attack this nasty beast of a disease as aggressively as you did? You would always regret it and think, but what if we didn't listen to Sloan and tried the aggressive treatment anyway? I know you worry about what you put Mattie through, but think of it this way--regardless of what Mattie went through, your blog was always painted with the most beautiful photos of Mattie and others just beaming with joy. You and Mattie impossibly brought such happiness to the halls of a children's oncology ward. I will never forget the Abba songs and resulting smiles and so many other similar happy images. How incredible that you made Mattie so happy during this past year. And it's all due to your efforts to surround him with so many loving people. You rallied the forces to accomplish anything Mattie needed. Your gut always led to all the right tests being done and getting all the support he needed. You did everything right. Everything. And know that your efforts DID change the course of Mattie's future. Your beautiful little boy's life was extended and he had more HAPPY days on this earth because of you. I sit with a pit in my stomach as I type. I don't think I can sleep tonight, so please feel free to call me anytime tonight or e-mail if you need to just know someone else is awake and thinking of you. In continuing your valiant efforts to make Mattie happy, can I contact the Great Zucchini to have him stop by? He would happily stop by multiple times, and I know he wouldn't fail to bring a smile to Mattie's face. And would you be interested in having someone contact the Make A Wish foundation? What would Mattie's wildest dream be? We can make it happen.We love you so much and are so incredibly sorrowful. There are many heavy hearts around the world today that ache along with you and would do anything if they could only make things better. Please know that we are with you tonight and always."
The fourth message is from a fellow RCC parent and friend. Ashley wrote, "I sit in silence and stillness after reading the blog from yesterday, Vicki. Ifeel the news in my interior, circulating about as the past year runs through my mind and the weeks and months to come are envisioned in my imagination. The first image to come to me after some time in silence was from ecclesiastes in chapter four when the writer envisions a threefold cord. two are better than one, but two wrapped together with a third cord are hard to be broken. I see this several ways: you and Peter are each one cord, being held tightly together by a third cord, or the Holy (my primary image of God right now). or....the third cord can be a combination of several things. so you and Peter are each a cord, and the third cord is a combination of Mattie and the Holy, binding you all together like a braid and, even in death and dying, impossible to be broken. Vicki and Peter: we walk this road of death, dying and the end of Mattie's lifetime with you. The community created is also part of that third cord, impossible to be broken, sustained by love and compassion in your brokeness and pain beyond words. I know you have your catholic priests but also know you have a protestant pastor, waiting in the wings if needed to create ritual, sustain memory, and to witness Mattie's Great Labor with life and dignity bound together with that three fold cord."
The fifth message if from one of my mentors and former chair of the counseling department at the George Washington University. Sylvia wrote, "There are no words big enough to capture this devastating news & its effects. You are all in my prayers. When you go to that "what if" place, know that you have the resources to not stay there. Even one extra day with Mattie is worth your good decisions on his behalf. The blog and its pictures of Mattie's joys show clearly that there many days this past year when along with the pain there was joy and love. Those experiences will always be there as you walk this pathway with each other."
The sixth message is from the transporters from the Dept of Defense. Thanks Charlie for sharing Mattie's story with the transporters. Response from the 150 plus members on the Transporter email list today regarding Mattie's recurrence: "This one hurts. I can only say that Heaven needs Mattie and in the words of Charles Erwin, Mattie will be welcome and there will be a vast improvement. My heart goes out to the family and all those that stood by Mattie." ~ Sandy and the Transporters of the Dept of Defense
The final message is from a colleague and friend. Susan H. wrote, "I am sitting here after having just read last night's blog entry. I had an appointment. out of town this morning so didn't get it read before I left. My computer keyboard is now wet with tears. I am so very sorry that you have received this news. Throughout these months I have tried picturing Mattie in adulthood as he tells the story of what he overcame several years before. I was SO hoping that would be the outcome. I'm over a thousand miles away but my heart is right there with you. Mattie, and your blog have been positively infectious in drawing people into your lives, to educate us, to surround you with love and hope. The love continues, the hope changes to focus on moving forward, and emotional healing, as well as the continued connectedness between the three of you that seems so powerful and memorable."
