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Support Mia's Battle Against Leukemia
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Hello everyone my name is Robby Boscaglia and my wife's name is Ashley Boscaglia. Our daughter Mia is 8 years old. Unfortunately we are here again asking the world to pray for our “Princess Warrior” as she fights her fifth battle against leukemia. We are completely devastated and heartbroken but at the same time still full of hope and have faith in God that she will be cured
We are going through every parents nightmare….chemo , radiation, spinal taps and all the aches and pains that go with these procedures.
We are hoping that Mia gets accepted to the St Jude’s in Memphis for her second bone marrow transplant and her care will take up to six months.
St Jude’s is a blessing for us, but they can’t accommodate the size of our family for this time period so we need to rent for the duration of her care.
Please help us reach our goal so we can keep Mia’s siblings with her when she needs the support post procedure
Mia will be facing a 2nd bone marrow transplant. We will be traveling out of state for the transplant and are asking for donations to help with the cost of housing and any other unforeseen medical expenses while we undergo a second transplant. She’s looking at a minimum of 4-6 months in the hospital if everything goes smoothly. We thank you so much for your support!
Below is a timeline and details of her cancer journey
In May of 2018 Mia was attending daycare where we lived in Naples Fl and came down with an ear infection. We took her in to her pediatrician and she was put on standard antibiotics and were told it should clear up in a few days. After a few days the infection was not clearing up and Mia was just not her normal self. We took her back in to see the doctor and he said that the antibiotics she was on were just general antibiotics and the infections could be resistant so he decided to put her on something stronger. After taking the stronger antibiotics Mia still wasn’t improving and one day at daycare her teacher called and said her ear drum perforated and was draining fluid from her ear. We knew something felt wrong and by now she should be improving with the stronger antibiotics. That night Mia spiked a high fever and both Ashley and I knew something was seriously wrong. We knew there was something more than just an ear infection. She spiked a high fever on strong antibiotics and high dose Tylenol and Motrin. We decided to take her to the ER and not wait until morning for the pediatrician. In the ER they immediately ran blood tests and found her hemoglobin was alarmingly low at 7 and she needed a blood transfusion. At this point doctors were very concerned and admitted her into the hospital to see how her blood counts would look the following day. The next day she was still running fevers and her blood levels were still dropping after the transfusion so they gave us a choice either take her home on different antibiotics and see how she would do or we could put her through a bone marrow aspiration test to see what could be causing her blood levels to be dropping. As parents it was a difficult choice but we knew we couldn’t leave any stone unturned and our gut instinct told us there was something deeper going on with Mia. We decided to get the bone marrow test done. A day later a hematologist came to us with the devastating news that they found 97% blast cells or Leukemia cells in her bone marrow. This was the cause of the high fevers and why her blood levels were low and her infection wasn’t clearing up. This day 05/26/2018 would change our lives forever. We were living every parents worst nightmare. That same night Mia was rushed by ambulance to Golisano children’s hospital in Ft. Myers Florida to meet with an oncology team. On 5/27/18 the next day she had her port placed in her chest and she started a 2 year long treatment protocol. Her initial prognosis was actually great. The oncology team was very confident and told us that Mia was considered low risk and had a 95% chance she would be cured and one day she would grow up to have a family and kids of her own. We were very happy with the prognosis but knew we still faced a very tough battle. The protocol she was put on consisted of induction chemotherapy, steroids, spinal taps with chemo and bone marrow aspirations. We started the journey with Mia.
Fast forward a year and a half later In the spring of 2019 after chemo therapy treatment, spinal taps ,infections and many in patients stays in the hospital we got a call one afternoon and were told by doctors to sit down before they tell us some news. After a routine bone marrow aspiration test was done, her oncologist found the cancer had come back and she officially had her first relapse. There was a very high level of leukemia cells in her spinal fluid. We were only a few months from finishing the 2 year treatment plan. Once again our world was turned upside down and we were devastated. To make matters even worse the relapse occurred in the midst of the Covid-19 pandemic. Due to the relapse being aggressive she immediately needed to start an aggressive treatment to get the disease under control. Due to the fact that we were in the middle of the pandemic the hospital had extreme safety measures especially with kids like Mia who were very immune compromised. Not only did we have a fear of the leukemia relapse alone but now add COVID to the mix and her having a very high risk of getting the virus. She again would get induction style chemotherapy and had to be admitted into the hospital for 2 months to begin treatment . This was a very difficult time navigating Covid and the treatment plan. Our family was separated and only one parent was allowed in the hospital at a time. The treatment plan consisted of chemotherapy and also an immunotherapy called blinatumomab. This was a newer therapy which had a lot of success rates.
Fast forward 6 months to the fall of 2019 following the immunotherapy and chemotherapy treatments, we got the news again that the immunotherapy didn’t work and she relapsed again for the second time. At this point doctors in Golisano knew Mia had an aggressive resistant Leukemia that needed special attention and referred us to John Hopkins in St. Petersburg Florida. She needed more advanced treatment and care. The standard treatment protocol was just not working. After meeting her new team of oncologists in St. Pete they recommend that she get Car-T therapy. Car t therapy is where you undergo a blood collection where they extract the T cells from your body and modify them to recognize and attack the cancer cells. The blood is taken out of your body and then sent to a lab to be modified and then re infused back into your body. As her parents we felt this was a great option which also had great success. We were hopeful that this was just a minor bump in the road. Mia was admitted into the hospital for several weeks to begin this therapy.
Fast forward 6 months we had decided to move to Michigan to help ease the financial stress we had trying to live here in Florida and juggle all the hospital stays and treatments we had to face. In those 6 months Mia was doing excellent and we were very optimistic that the car t had worked. Her blood counts were great and Mia looked the best she had ever looked. Upon arriving in Michigan we established care with her new bone marrow/car t team at the University of Michigan in Ann Arbor. The very first phone call we received from her doctor in Michigan was to discuss test results done by John Hopkins. Once again we were given the unfortunate news that they were predicting a relapse would occur. They decided to monitor her for a month or so and officially claimed she relapsed for the third time in August of 2021. At this point her team in Michigan recommended a bone marrow transplant. As parents and for Mia this would be the hardest thing we would face to date. On a side note related to the transplant . A year prior Mia’s little brother Luca was born. At the time we didn’t know Mia would need a transplant but a nurse at Golisano always told us if we ever have another kid save the blood from the umbilical cord. It could save Mia’s life one day if she ever needed to face a transplant. We did decide to save the cord blood when Luca was born and fast forward back to Mia needing a transplant, Luca ended up being a 10/10 match and they used the blood from the umbilical cord as the donor cells for the transplant. The transplant in Michigan consisted of 3 months inpatient in the hospital with chemo therapy before transplant and also total body radiation. Everything went smoothly and she took well to the donor cells. She slowly recovered and was back to her normal self the following summer of 2022. She still was monitored very closely for the remainder of the year and was dealing with minor graft vs host disease which required several medications and treatments to keep it under control. By November of 2022 Mia once again looked very healthy and her blood counts were the best they had ever been and in normal range. Her hemoglobin was a 14! Once again after a routine bone marrow aspiration and spinal tap her doctor called one evening to break the again devastating news that she relapsed for the 4th time. As parents we were more scared than ever now knowing a transplant had failed. At this point doctors wanted to rush into chemotherapy and treatment but as her parents this plan didn’t feel right and we knew we needed to get her to a facility that specialized in hard to treat cases. After talking with tons of families and doctors we came in contact with the Children’s Hospital of Philadelphia. They were one of the top hospitals in the world for pediatric care and treatment for kids with leukemia like Mia. They specialize in humanized car t therapy with very high success rates. We were able to get a second opinion with CHOP and they chose Mia to be a great candidate for a humanized car t trial. We knew her first Car t treatment was unsuccessful but the humanized version at chop was more advanced and had more success with other patients. We decided this was the best option for Mia and decided to enroll her into the trial and go through the treatment in the beginning of 2023. We visited Philadelphia several times for checkups and prep for the treatment. In may of 2023 Mia would receive the Car t therapy and would begin follow up throughout 2023. In December of that year a test result came back and that they saw a return of B cells. At only 6 months post treatment doctors were concerned that it was too early for the B cells to be returning so they decided to give her a booster of cells . We stayed in Philadelphia for December of 2023 and January of 2024. We would then head home to Michigan to let the cells do its work and let Mia recover.
In may of 2024 Mia went to Philadelphia for a 1 year anniversary from treatment follow up test. They would test her bone marrow and spinal fluid to see if there were any B cells still there and to see if the leukemia was still in remission. Several weeks later we received a call from the doctors at Chop that Mia had relapsed for the fifth time. The leukemia was back in her spinal fluid and a very small amount was in her bone marrow. As her parents you can imagine what we were thinking and feeling. Mia was doing great with no side effects but we knew what was in store for her. At this point we are understanding of the fact that all of the standard treatment options have been used and did not work. Michigan had already told us they no longer had a curative option for treatment and now Chop was telling us that it was up to us on whether we wanted to treat her still or just give her treatments to buy her time until she passes. This was not an option for Mia or for our family. Mia is a fighter and overall still very healthy and has an excellent quality of life. We are not going to give up searching for her cure. Mia is one of the toughest people we have ever come across in our lifetime. She’s only 8 years old and has been through hell and back and still somehow is always smiling happy and dancing her way through life. We are very grateful for all of the doctors and medical teams we have met and worked with throughout the last 6 years and they all played a role in keeping Mia alive and getting us through this extremely difficult journey we are on. We are also very grateful for all of the family that also helped get us through these difficult times. We love you all and We will continue to fight and search for the cure for Mia.
Doações
Organizador
Ashley Boscaglia
Organizador
Naples, FL