Thursday, August 6, 2026

Thursday, August 6, 2026

Tonight's picture was taken on August 6, 2009, the day after we learned that Mattie's cancer was terminal. I remember this moment so vividly. Mattie was in the clinic playing with his friends and art therapists, while we were in a conference room with Mattie's oncologist discussing his medical case and what options were left. It was a horrific and very emotional conversation, because there was NOTHING left to try! We had been actively fighting for a cure for a year, just to be hit with the fact that all the chemotherapy and surgeries were futile. After the meeting with the doctor, we came back into the clinic and as you can see, Mattie was studying my face (which was red from crying). Mattie and I were very tuned into each other and I walked a fine line that day from absorbing all the news, to trying to appear together to help and support Mattie. 

Quote of the day: 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

Last night, before I went to bed, I checked all my medical portals to see if the CT results from my heart scan were ready! When I complain about the state of our of healthcare system, I am also very aware that in many cases we have the best system on the planet. Why do I say this? Because in no other country could you take a medical test and then the very same day get results. Instantaneously! Of course checking the results before going to bed may not have been the best plan, especially if the results were bad! Fortunately in my case, my CT results showed zero calcification in my heart. Meaning the results haven't changed from four years ago. This has paused the conversation of having to go on a statin, and instead, I have been given more time to continue my exercise routine. I view this result as a blessing and I take positive news whenever I receive it. As I learned with Mattie, life can change from just one scan result! 

I am in one of those fragile moments again in my life and when in these moments, I go back and read past blogs. So, like last night, I am sharing an excerpt from the August 6, 2009 blog posting. The context was the day after I learned Mattie's cancer had metastasized everywhere. Even back then, I was struggling with the notion of living life without Mattie. I felt I had nothing left, and then my friend reminded me this wasn't true. I had my other half and together we would find a way forward. Reading that reflection from 2009, hit me hard tonight, because now I have lost him too. Just too, too much loss for my head and heart. 

Excerpt from the August 6, 2009 blog................................................

Today was another emotionally draining day! Thursdays are typically our MTP-PE (immunotherapy) 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 overnight. 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 X 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 tumor sites at diagnosis, 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. 

X 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, who has since died from her disease), 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 X and I in any way today during the meeting. I told her not to worry about X 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.

While Mattie was having a great time, X 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  X 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 osteosarcoma 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 X 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.

X 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 X 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. X 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, 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. X 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 one of his friends and left him alone. Certainly not alone, he was with X and others. 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 my friend 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 X 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 my friend that without Mattie my purpose and meaning in life is gone. My friend responded back by saying that this wasn't true. That my life alone is very valuable and my presence is needed not only by X 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.