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Rachel’s Journey

It was right after Hanukkah when Rachel started to have symptoms. She was tired and called me several times from school to pick her up early…

 
 
Rachel at Stony Brook and still in good spirits.

Rachel at Stony Brook and still in good spirits.

December 2016

It seemed like typical preteen symptoms- lack of sleep, lethargy, run down. But it wasn’t like Rachel. Rachel liked school. She liked her teachers. She loved her friends. She had more friends than anyone I’ve ever met! She called me several times that week while I was teaching, and I clearly remember walking out of my classroom to talk to her to find out what was wrong. We went to the pediatrician maybe two times as well as Urgent Care before the diagnosis. The pediatrician said it was probably a virus and to watch it. I thought maybe she had mono. I even remember her asking me to pick her up early from dance that week, which was odd. Then on December 21, I picked Rachel up from school and this time the pediatrician knew it wasn’t just a virus. After testing negative for the flu and strep, he did a finger prick and it showed a crazy WBC. He thought his machine was broken. He then ordered blood work at St. Catherine’s. That’s when I knew it could be serious. She threw up in the hallway at St. Catherine’s. That was the first of many times I would witness this...seeing my baby girl sick and scared. When we returned to the pediatrician’s office down the road, his assumptions were correct.  Her white blood count was off the charts. He knew she had leukemia.  He delivered the news to us that Rachel had cancer, a type of leukemia, and he immediately rushed us to Stony Brook Hospital where renowned pediatric  oncologist Dr. Parker was waiting for her.....

At SB, it was confirmed Rachel had leukemia. But not just any leukemia;  Rachel had AML.  She had a leukemia that is rare for children to have. It’s mostly seen in adults. And we’d later learn it’s much harder to treat.  The team that met us at SB immediately went to work on Rachel’s case and provided excellent care. The first step was to reduce her WBC count of 323,000. Rachel endured a lot of discomforts immediately: hooking up to IVs, receiving a catheter, not being able to drink water, getting an echo, undergoing a bone marrow test and spinal tap, and many more, but always with a smile.  The results gave the doctors the information they needed for the treatment plan or “road map.” 

Chemo began on December 23rd. From the start, the doctors and nurses were happy with Rachel- her WBCs went down and she was an amazing patient! Chemo was tough- she was nauseous and febrile but she did great! We met Dr. Meyer and immediately fell in love with her and her warm bedside manner and calm demeanor. And the relationship was reciprocal. Dr. Meyer took an immediate liking to Rachel.  We always felt comfortable talking to each other. Christmas came and her WBC was down to 23,000! It was certainly not how she wanted to spend Christmas, but Rachel never complained. On the 26th, she received blood and platelet transfusions. They also prepared her for the placement of a PORT in her chest (a small medical appliance that is placed beneath the skin)the following day. The next few days consisted of antibiotics for her fever, a sonogram of her kidneys, discussions about nutrition, mouth sores (possibility of taking her braces off), PT, good hygiene, meeting more nurses, residents, specialists, and getting more transfusions, etc. It was all so surreal and overwhelming to say the least. Not at all where we thought we’d be welcoming the new year. But from day one, the love and support we received from our family and friends was enormous.


Early 2017

The new year arrived and Rachel was enduring at least a month’s stay at SB. By the 8th, Rachel decided to shave her hair. Her scalp was getting itchy and she didn’t want to see any more hair on her pillow. Michael, our family friend and hairdresser, came to her room and it was a very quick and painless event. She was so brave and she looked so beautiful. It would turn out that Rachel was more concerned about me that day than losing her hair! She embraced her new look and so did I. 

The next day, psychology and tutoring sessions began. This was the beginning of “home teaching” for Rachel.  Little did we know it would come to be one of the highlights of her time away from real school. The tutors instantly fell in love with her and Rachel learned more than ever! She received straight As that year!

More family and friends also started visiting and Rachel was in good spirits.  Both sets of grandparents never missed a chance to be with her.  In fact, during the journey, Rachel developed a unique bond with her grandparents. She learned from them and they learned from her. They laughed, cried, and spent hours upon hours playing games, watching movies and just talking. Whenever she didn’t want to drink more liquids or walk around, I had her girlfriends come to nonchalantly walk around with her and play drinking games with her! This way it became more enjoyable for her to leave her room and to get her daily requirements.

Her next door neighbor, Jackson, loved hearing her blast her music and stay up late like he did! And we became friends. As January continued, visits from other doctors included the G.I. Team and discussions from experts about pain management and nutrition. On day 28, we went home and learned about all the restrictions of living in the real world with leukemia. That was not easy! Rachel was a true “foodie” and adventurist.  I had to restrict where she went and what she ate since she was neutropenic and her immune system was compromised. It certainly was tricky, as my home cooking and activities were not the best! But I did let her see her close friends and we made it as fun as possible.

By 1/24, she had her 2nd bone marrow and spinal cord procedure, a protocol that she endured after each round of treatment. She was given anesthesia during this process. We would joke later about how many seconds she counted before she fell asleep! The results came back and they weren’t good. High risk. She was back at SB on 1/27 for her 2nd cycle of chemotherapy. During this visit, Anthony, Rachel’s younger brother, was tested to see if he was a match for her to receive a bone marrow transplant. We learned he was not a match. 

Anthony’s visits consisted of Uno games, watching movies with Rach and even the typical brother sister teasing. 

By 2/8, it was determined by SB and Seattle (the hospital where her cells were sent and analyzed)that Rachel would receive chemo only. No minimal residual  disease present. 5 cycles. She went from high risk to standard risk! After chemo, infection followed as well as fevers. She visited the ICU and continued to receive antibiotics and blood transfusions. She was told about the importance of good nutrition and exercise. By 2/27 (Day 32), Rachel went home again. This visit lasted until 3/10 when she began round 3. Five days of chemo. This round brought a lot of nausea, heartburn, rashes, menstrual cramps, loss of appetite, and fever. More transfusions. Required exercise. She went home once her ANC reached 270 on 4/14 (Day 36).  

We visited SMKCC on 4/21 (my birthday)to meet with Dr. Kernan, a bone marrow transplant doctor. She confirmed Rachel’s plan and course of treatment. She basically said that Rachel didn’t need them, at least not at this time.

Always with a smile on her face, no matter what was going on.

Always with a smile on her face, no matter what was going on.


Always thinking of others, Rachel took this picture for her brother on his first day of school one day before resuming her treatment.

Always thinking of others, Rachel took this picture for her brother on his first day of school one day before resuming her treatment.

mid-late 2017

Rachel began round 4.  Round 4 consisted of Cytarabine, Daunorubicin and Etoposide. This brought nausea, fever, pain, constipation, and difficulty eating due to mouth sores and rashes. 

On 5/10, we learned the results of Rachel’s unrelated donor search. They were confident they’d be able to find her a donor. We were so relieved.

The month continued with transfusions, daily maintenance from the nurses (who we now knew and loved just like our own family) and hopes of the counts going up so Rachel could go home. Rachel spent her 13th birthday at SB, and despite the fact it wasn’t where anyone should celebrate their 13th birthday, her amazing nurses made it as enjoyable as possible.

We went home on 6/6/17 (Day 35). On 6/30, the bone marrow results were good.

Summer of 2017

The summer began and Rachel was doing normal teen activities. She went on vacation. She went to camp- her favorite place to be! 

She saw her friends and family. On July 22, she flew alone to Florida- one of her greatest feats. Aunt Merri was waiting for her on the other side and they spent an amazing week together in the Florida sun. Life was good. But towards the end of July, Rachel’s platelets had dropped. The bone marrow procedure on 8/4 showed no signs of leukemia. But it was starting to become clear she had Bone Marrow Failure Syndrome. By 8/15, we learned that out of the 11 chromosomes analyzed, 3 or 4 showed a MLL problem (Mixed Lineage Leukemia Gene), which Rachel had before. The cells could be abnormal. Dr. kernan started to search for a bone marrow donor just in case. Meanwhile, I took Rachel and Anthony to Anthony’s baseball tournament in Hershey, PA. We had the time of our lives. I am so glad we went on that trip. I only wish I had let her go on more rides.

On 8/21, we spoke to Dr. Kernan who felt she had myelodysplasia (a chronic disease that in time may evolve into acute myelogenous leukemia) and probably had it before her leukemia diagnosis. She had low blood counts, some MLL and new abnormalities. Not full blown leukemia but treatment was needed. Rachel went to the 1st day of 8th grade and then the plan was to receive treatment at SB and then 5-6 weeks later transfer to MSKCC where they’d have the best donor for her bone marrow transplant.

9/7/17- Round 1, Day 1

Relapse. Relapse means leukemia is more aggressive. A heavy duty chemo was needed- the FLAG regimen: Fludarabine, Cytarabine with GCSF injections.  These drugs came with nausea, body pain, no appetite, need for frequent transfusions, trips to the ICU, fevers, infection, blood clotting, pneumonia. It was not an easy time for Rachel. On November 5, my friends came together to host a bone marrow  fundraiser/drive in Rachel’s honor. Be The Match got 50 people to swab their checks and money was raised for Rachel’s treatment.

Rachel  was home by 10/23.  Dr.Meyer called and told us they saw 2.5% disease left. They scheduled 2 more doses of Cytarabine for the following week.

On 10/24, we went to MSKCC for initial transplant work-up testing.

Then after more chemo, we learned on 11/21 from Dr. Kernan that blasts of leukemic cells were discovered in Rachel’s marrow. She would now have to endure 6 weeks of TVTC treatment before the transplant. Drugs included Vinorelbine, Topotecan, Clofarabine, Thiotepa. She received Neupogen shots and frequent blood transfusions. Mucositis was very painful for her. She had muscle soreness and couldn’t eat. She received a feeding tube and had a lot of anxiety/depression. One of the highlights during this time was watching Rachel’s chorus concert at CMS live and see and hear her teacher and classmates say hello to her. The days were long, but SB always made the days brighter for patients: pet therapy, visits from local athletes like the Ducks and the Islanders, and volunteers who were always available to do things to make Rachel happy. We used the hospital’s conference room to try to continue our holiday traditions with our family. 


2018

The next few months, Rachel tried two different immunotherapies. In order to receive the transplant, she had to be in remission, the disease had to be low enough, or her cells needed to be aplastic.  During this time, Rachel and I lived at my sister Alison’s upper east side apt. only a few blocks from the hospital with my brother-in-law Bryan, my nephews Ethan and Aiden, and my niece Emilie.  Rachel and I were so grateful to become part of their immediate family for a few months and to enjoy the wonders of New York City. It was during this time that the high school where I am an English teacher, hosted a talent show honoring Rachel and other families dealing with the hardships of battling cancer. The “K Factor”is a fun-filled night of students showcasing their talents 

in music and dance, the two things Rachel loved. Rachel and I watched it together and it was such a special night.

In April, Rachel attended one of her dance studio’s competitions.  This was also a great day. Rachel saw all her dance friends and she watched them perform their numbers.  It brought her so much joy. Her dance friends and studio owners were always a constant in her life and supported her tremendously throughout her journey.

Unfortunately, Rachel’s body didn’t respond to the immunotherapies. So, MSKCC and cell therapy expert Dr. Scaradavou (“Machi”) came up with a plan. A new plan for Rachel. A plan only used in adults.  Using cord blood, some chemo, and radiation, they hoped that this would finally get her to transplant.  But there were no guarantees. On 5/14, Rachel was admitted.  Once again, we were met by an amazing staff of doctors, nurses, therapists, etc. I’ll never forget how well they treated Rachel and me and how they wake up everyday to work in such a challenging environment. What followed was a lot of anxiety, nausea, fever, rashes, infection, fever of 108 (a number never seen before at MSKCC), inflammation, low blood pressure, no appetite, body pain, and lots of testing. During those challenging days, her family always came to cheer her up. She received leg massages from her older cousin, Ethan. She colored and made slime with her younger niece, Emilie. She shared music and jokes with her younger cousin, Aiden. She also enjoyed watching her baby cousin, Isabella, grow and respond to her. 

By 6/7, Rachel was aplastic, going to transplant on 6/18, her 14th birthday! First she underwent full body radiation. Once again, Rachel was amazing! She was so brave! Whenever we arrived down in radiation, the technicians already had her favorite Post Malone song playing. She had pre transplant chemo and was able to receive her transplant on 6/18. She was a pioneer. This protocol is now being used on future pediatric patients.

6/18 was a great day! She felt well, received her stem cell transplant, and celebrated. The entire family was there and we were all so happy. She opened up tons of presents including her favorite: Gucci sneakers!!!

Unfortunately, from 6/18-8/30, Rachel’s body couldn’t handle it. She was in the best care with amazing doctors, nurses, therapists, etc. However, it seemed as if Rachel got almost every side effect explained to us as possibilities.   She got VOD (a liver problem)PRES(Posterior Reversible Encephalopathy Syndrome), went to the ICU several times, picked up Pneumatosis, Candidiasis, needed a feeding tube, couldn’t get out of bed and never recovered.  On August 30, 2018, Rachel passed away peacefully in her sleep.

I love and miss you, Rachel. You made mommy so proud. You inspire others every day. WE ARE ALL BETTER BECAUSE OF YOU.