Maggie's Medical Journey - the start of the end.
Her story is long and complicated. We are not sure if an appendectomy surgery in November 2015 was correlated to her final diagnosis of MRT, but we suspect it was, as it was in the very same area where everything seemed to originate from - her right ovary.
Maggie wasn't diagnosed with cancer until October 2016, but was first sick on August 10, 2016. Just 18 days after doing her first and last Tough Mudder race. Maggie, who was always healthy and hardly ever sick, texted me one day at work to tell me she wasn't feeling well. I thought perhaps it was her menstrual cycle (though she had never complained before) and told her to take an advil, try a hot bath, or a heating pad. She texted me back and said nothing was working. I made an appointment with her pediatrician and brought her there as soon as I got home. Her doctor felt her abdomen, assessed her pain level and said she thought it might be a burst ovarian cyst or an ovarian torsion and suggested she needed to be seen at a Hospital. I took her on that stormy, late August afternoon to Huntington Hospital as it was the closest hospital. We waited in the ER forever as they were trying to fill her bladder with IV fluids so that they could do an ultrasound but her bladder never filled. We waited and waited as her condition quickly deteriorated and her pain level rose. When they finally took her into the ultrasound room, she started vomiting. The ultrasound tech was able to quickly get a peek inside and said I needed to demand a catscan asap. We left that ultrasound room with me loudly demanding a catscan. It was then that they finally wheeled her into the CT room after hours of waiting. The catscan tech closed the doors on me for the test and I suddenly heard the tech screaming for help - I burst through the doors and saw Maggie white as a sheet not moving and thought she had died right then and there. She awoke to the sound of me screaming for help. Maggie had been bleeding internally and needed blood transfusions and emergency surgery immediately to stop the bleeding from what they thought was a burst ovarian cyst. They came out and explained what was happening and I told them to remove the ovary if they needed to save her life.
The surgeon, Dr. Del Rosario, came out of the ER after the surgery and told us Maggie would be fine and they did not need to remove her ovary. But, for two days in Huntington Hospital after the surgery, Maggie was not fine. Her heart rate was high, she was nauseous, she was pale, she was very weak and in pain and still needed blood transfusions because her hemoglobin levels were still very low. This was rationalized by the staff telling us Maggie must have lost more blood during the surgery than they thought. We kept begging for another scan but they refused, saying they wouldn't be able to see anything and there was no way Maggie was still bleeding.
Maggie's pediatrician knew better and so did we, but we were consistently ignored. Her pediatrician told us to get her out of Huntington Hospital before she died and started advocating for a move to Cohens Children's Medical Center. Cohens wouldn't take her unless Huntington did a catscan to see what was wrong because at that point, Maggie was considered to be in very serious condition. Upon finally doing the scan, they saw that Maggie's abdomen was filled with blood for a second time. Huntington Hospital wanted to operate but we would not allow them to touch her again. We signed papers stating that we were transferring Maggie against their recommendation and she was taken to Cohens in the middle of the night by ambulance. My husband rode in the ambulance with her and I followed behind with Maggie's aunt.
Dr. Heather Appelbaum from Cohens Children's Medical Center did the second emergency surgery (basically two horizontal c-sections cuts - the second wider than the first - in less than three days) to stop the bleeding and put in a drain to monitor for any additional excessive bleeding. Once again, I told the second surgeon to remove her ovary if they had to to save her life. Both the first surgeon in Huntington Hospital and now the second surgeon ignored me. After this latest surgery, Maggie was in the hospital for about a week altogether. When they sent us home, they did not put a pressure bandage where they removed her drain and by the time we got home, we had to rush right back to Cohen's ER because there was too much blood loss in the bandage. They did another CT while we were there to ensure there was no additional bleeding going on - there wasn't. However, they did see a small mass on her right ovary and sent us home anyway saying that everything that happened was a freak incident and suggested that Maggie might have a bleeding disorder and to follow up with a hematologist in a few months. I don't know if they thought the small mass was another cyst or what.
Maggie was never quite right after that, she had lost significant weight and was very anemic - though she did start school in September and even got herself a job. She complained on and off of pains, which I would call Dr. Appelbaum about and she would say to give her Advil and not to worry. On both the two week and six week follow up visits to Appelbaum, I asked for ultrasounds to ensure that nothing was going on and both times, I was dismissed.
One time, while I was at work, Maggie texted me to say her tooth and jaw hurt really badly. I rushed home to take her to the ER because instinctively, I knew something was seriously wrong with our daughter but I didn't know what. I was in panic mode 24/7. The doctor in Cohens Children's Medical Center Emergency Room said Maggie might have TMJ and to see a dentist and let us go without doing any testing. I took her that very same day to our family dentist and he took X-rays and examined her and found nothing amiss with her teeth and said he did not see any signs of TMJ. I called the ER and tried to speak with the doctor that saw her to complain that she was WRONG and that Maggie did not have TMJ but never heard back.
Fast forward to October where Maggie complained of bad pain again by her right ovary. I made an appointment with her pediatrician who was her biggest and best advocate and she felt her abdomen and said it felt "squishy" and to take her for an ultrasound and X-ray. I took her for the tests and the radiologist called me in and said to take her to the ER because she had what she thought might be a "hematoma" on her right ovary.
My husband and I took her once again to Cohens and the Doctors looked at the radiology report and said they thought it was just a leftover blood clot from the prior surgeries, that her body would reabsorb it on it's own and to go home. They said they would see us in three months and that she could continue to play gym and do any activities she wished. Maggie, who never missed school, begged me to not be forced to participate in gym. She had to have been in awful pain this entire time, which makes me sick just writing about it.
It was 4 a.m. when we finally got home from the ER and we were all exhausted. Maggie stayed in our finished basement with a friend all day and did not once get up from the couch and refused to eat. By midday, I knew something was wrong and took her temp, it was close to 104. I got my husband home and we rushed back to the ER, where we waited for 1.5 days until they could get Maggie in for an MRI because they wanted to drain the so called "hematoma". By the time they "squeezed" us in for the MRI, Maggie was in excruciating pain and could not even lie still for the test. They couldn't do it. Unfortunately, that tumor or as they called it - hematoma, burst that night and Maggie passed out again from blood loss. In the morning, (because no surgeons were available at that time of night for surgery) they had to do another emergency surgery, this time cutting up vertically towards her belly button to stop the bleeding and try and fix what was going on. She lost another three liters of blood. During this surgery, they finally removed her right ovary and had to resection her bowel due to what I assume were tumors and it was then they saw multiple masses in her abdomen. When the surgeon came out and told us this, I immediately asked if they thought it was cancer and they said they had a pathologist in to look at things during the surgery and that he said they did not think it was cancer. We were hoping it was endometriosis. Maggie was in the hospital this time for just over a week. Midway through her stay, they did a CT scan that took longer than I expected. I should have known, it was because they were looking to see exactly where the cancer was and had spread to. It took FOREVER for the pathology to come back. They called us into a little room and gave us very grave news. That Maggie had stage 4 small cell carcinoma that likely started in her ovary and that the best we could hope for was to extend her life. We were broken by the news - broken!!!!!!!!
We thought long and hard about what to do, to fight or not and decided we had to try and save our daughter's life. My entire family started researching the best places for the type of cancer she had (still not even knowing it was MRT). We ended up choosing Memorial Sloan Kettering in NYC because it was close to home and many of the other well known cancer hospitals said they would have used the same protocol as MSK.
MSK made the final diagnosis of Malignant Rhabdoid Tumors and put together a schedule of treatments that began with three rounds of chemo, then scan. Her first chemo was given and consisted of Doxorubicin, Vincristine and Cyclophosphamide. This was given on Monday and Tuesday, followed by Mesna and hydration. She had to be hospitalized that very first time because the fluids they gave her to hydrate in anticipation of chemo filled her abdomen in what is referred to as third spacing and did not do what they were supposed to.
This chemo cycle was repeated three times. Maggie was admitted to MSK each neutropenic week because she always ran fevers. They did a scan after the first three cycles and it showed reduced growth on most of the tumors to the point where they felt it was safe to do surgery to remove as many and as much of the tumors as they could. The surgery on January 12th, 2017 was successful at removing the most sizable tumors and Maggie recovered well from the surgery, despite being opened up all the way to the bottom of her rib cage in a vertical cut. THIS MAKES FOR 4 MAJOR SURGERIES! Ouch.
The Doctors from MSK waited after the first three chemo rounds to do the surgery and then again after she recovered to start what would be a different protocol of chemo treatments. While the first three cycles of chemo were given only the first two days, these new chemos - Ifosfamide and Etoposide combined with Mesna and hydration were given every week day. This was by far the worst treatment and Maggie complained and pleaded with us to not continue treatment.
She only had one round of these new chemo drugs because they did another scan on February 13th which showed new tumors and growth on existing tumors. It was then recommended that we start the clinical trial of Tazmetostat. She was on the trial for 5 weeks. In the beginning of the trial we were all very hopeful that this would be the cure we had been looking for. Maggie even attended school for a few days. But as the days wore on, it became very clear to me and I think to her too that the meds were not working. At the end of week three, Maggie noticed a visible tumor on her left ovary that was protruding out of her skin.
We kept badgering the clinical trial doctor to do scans but they told us that sometimes Tazmetostat made tumors larger before shrinking so we listened because we did not want to get kicked off the trial if scans showed growth.
By week 5, Maggie had stopped getting out of bed and was no longer eating much at all, her weight had dropped significantly.
It was finally decided to get a scan. The scan showed MAJOR tumor growth and new ones. We were then told that there was nothing more they could do. This was in early April. The doctor came in and explained to Maggie and her boyfriend Matt and us about her situation and it was the saddest thing to witness. My daughter was told she was dying. We went home and tried to make the rest of her time here on earth as happy and pain free as possible. We hosted a family gathering for Easter which Maggie requested. Her birthday was April 19th which we were able to celebrate by having another large party at our home wth friends and family. It was an extremely difficult time for all of us, singing Happy Birthday to Maggie, knowing it would be the last time we would ever sing those words to her.
From time of diagnosis of the cancer being terminal to the time of her death was just over 7 weeks. Her pain became increasingly difficult to manage and we had hospice nurses here constantly trying to help us help her. Tuesday, May 30th was by far the hardest night for Maggie and us. She was screaming out, writhing in pain and begging us to help, saying she couldn't do this anymore. She was moving around so much on her bed that she pulled out the top needle and line in her port. The head of the hospice who was helping us came over in the middle of the night and upped all pain meds but it still wasn't enough.
We knew we had to move her into an actual facility. The ambulance came that morning to take her to a local hospice and took her and my husband to the home - I followed behind. Our 19 year old son came too and brought our two dogs. They put her on Phenobarbital in addition to the Hydromorphone and Ativan she was on and Maggie was no longer able to move or speak. I believe she wanted to communicate but the drugs didn't allow for that. We all slept in the one room with her and around 3:00 a.m. Maggie started to breath very quick, shallow breaths. We called everyone in the family and told them her time was coming to an end. At around 9:30 a.m., Maggie lifted her head from the pillow, opened her eyes, looked around the room and screamed "MOM"! I said "What is it Maggie Schmidt? I am right here!" then her head fell back down to the pillow and her face twisted into a very dark and painful grimace - her expression and jaw went slack and she breathed her last breath.
We are angry because Maggie did not want to die yet could not endure the constant and growing pain she must have been in. I hate cancer and everything it did to our once very beautiful, confident and happy daughter. She was very thin when she passed with only her enlarged abdomen filled with tumors. Veins showed everywhere on her skin because she could not eat for the last three months of her life and besides the tumors, she was just skin and bones.
I hate the fact that I had to ask my teenage daughter what she wanted after her death. Did she want a wake, did she want a funeral? Did she want to be buried? If so, how? Maggie was a fiercely strong, independent and private girl and I just wanted to honor her wishes in every way possible. We had a two day wake with open casket which was packed with family, friends, teachers, school officials, acquaintances and even Josh Klinghoffer, the Red Hot Chili Pepper lead guitarist who became friends with Maggie and us during her illness.
My husband, son and I went to the funeral home and personally oversaw her makeup and wig done so that she looked well enough to have an open casket. Maggie did not wear a lot of makeup, she didn't need to. Unfortunately, the funeral home could not do anything about the scowl and permanent frown she had on her once beautiful lips and mouth. We waked her in an expensive wig our family bought for her, with a beanie on that Josh gave her. She also wore a Red Hot Chili Pepper sweatshirt and the favorite slippers she loved.
My husband picked up her ashes a few weeks after the services. I custom designed her a headstone using her artwork. We had a small memorial service for her when we buried part of her ashes in a local, rural cemetery in July. We kept the rest of her ashes and finally found an urn recently we felt was suitable to hold a small part of our only daughter.
We tried hiring a law firm after Huntington Hospital and Cohens Children's Medical Center messed up her care so badly. The pathologist the firm hired went back to Huntington Hospital and looked at the slides from tissue samples they had taken from the August 10th surgery and found cancer cells present which Huntington Hospital missed completely. However, there wasn't an "expert witness" in the form of an Oncologist willing to testify that Maggie's outcome would have or could have been different were she diagnosed in August instead of October, almost 2.5 months later. We find that crazy and a very bitter pill to swallow.