Nayeli Rose Kaufman, was diagnosed with Hodgkin’s Lymphoma Stage 4, when she was 9 years old, on May, 2018.
Saide Kaufman, Nayeli’s mother, is sharing her daughter’s journey through the disease, treatments and challenges.
This interview is part of MyChildCancer’s mission to extract hidden life-saving information
and make it easily accessible to other parents all over the world.
Because knowledge saves lives.
My name is Sadie Kaufman, and my daughter’s name is Nayeli Rose Kaufman.
She is now 12 years old, and she was 9 years old at the diagnosis.
What were the early symptoms?
The first symptom was a full body itchy rash, which she had for about a year, before anything else
She was extremely uncomfortable and she would scratch herself until she was bleeding, and it was just all over.
On September 2017, I saw the first little saddle swelling on her neck, and it just was something that only a mother could see.
I saw a roundness that I had not seen before and I took her to a local pediatrician, and he recommended an ultrasound.
I did the ultrasound, and the ultrasound technician, saw a pearl neckless of swelling around her neck,
and he said it’s highly suspicious and that I needed to address it immediately.
My husband was out of town for business, and no one was there, it was just me and my daughter,
and this doctor was saying he wants to do an emergency surgery immediately,
and we didn’t really have time to question and he was going to get the surgery set up for the next morning,
All I can say is that I had a strong mother’s intuition, that it was not the right next step for us, so I decided to cancel that.
That ability to tune in, to my intuition as a mother, and her wisdom and her clarity, has helped me in every way, with this work that we did with her.
By November, she had significant swelling; it wasn’t going down, it was clear that something was very wrong.
There was a big diversion of time and energy, and meanwhile Nayeli continued on, but she never had any pain because of the swelling,
and she always had a great appetite, full of energy. We needed to find a doctor;
so a friend recommended Dr. Jaime Shalkow. He is the head of pediatric oncology surgery at ABC hospital, which is the largest private hospital in Mexico.
He saw her and evaluated her with us, and with assistants, and he said to us -he was very confident that it wasn’t cancer. He thought that it was Castleman disease.
Her swellings were soft and mellow able, not as hard as he normally sees.
She lookd good according to him, he also checked her blood count I’ve brought with me, and he believed even from the blood test that it wasn’t cancer.
When compared to cancer, we were of course extremely relived that he didn’t think it was cancer.
then, he sent us home, go home and relax, but he did say that he wants to do a biopsy, just to discount, and it’s just the protocol, it’s not because I’m concerned about anything. It took weeks for the biopsy to come back, like, over two weeks. He was convinced that it wasn’t cancer. So I didn’t even entertain it in my mind at all, but it was a little strange that it took so long, for the biopsy to come back.
Then it came back, and my husband told me, and you know, it was unfarmable.
What did you first do after the diagnosis?
The morning after I got on a plain to Tijuana, to the biggest cancer hospital, sort of the alternative largest cancer hospital in the world.
I did that because I wanted to see what they would recommend. I wanted to have as much information as possible, as we were deciding what to do. I knew how this could destroy a family. When you are just so very afraid, and you want to do the right thing. In my mind, since I’m a nutritionist, I knew I was idealizing alternative treatments, and I just felt I could cause her harm to my family if I started pushing us in a certain direction before I had all the information.
The hospital, the directors, the doctors were all very generous with their time for me, and at the same time my husband was in Mexico city, investing what options we had. Which hospitals, how much it would cost. We looked at ABC Hospital, which is the biggest private hospital and we looked at INP, which is the national institute of pediatria in Mexico-City. It is the biggest pediatric hospital in the entire country. Of course, it is hard to get in there.
Dr. Jaime Shalkow helped us, and he told very bluntly, that we should go with INP, because even though it was a harsh hospital, they do not have many comforts, he worked at both hospitals, the highest, private hospital and INP, dividing his time. He said: that there was absolutely no difference, between the protocols in the two hospitals.
The only difference was the comfort level for us, the parents, and that was very useful for him to tell us.
Everybody said the same thing in the alternative hospitals.
They said: Chemo is the solution for this, it’s the right tool. Strong Chemo, quickly and strong, and we don’t need to do it here, go to the best local hospital that you can, and just get her started.
For me, that was incredibly clarifying. And it was so helpful for the family, because we didn’t have a lot of paths. It was one route.
What were the protocol and treatments your child received?
She did the ABVD Chemo protocol for Hodgkin’s lymphoma, she was given six rounds, and she took it in both arms at the same time, she was one of the only kids.
We did the treatment in INP, and she started with four days in the hospital. Where they started her off, she had to have a blood transfusion, and they did all these different tests on her, to see if, to get her ready for chemo.
It was extremely targeted, and this was one of the great values being at the INP hospital.
They had the biggest radiation machines, and they even did this net mask, since she had to have radiation in different points. They were able to isolate it so precisely; they did little one-dot tattoos, to keep everything lined up with the most advanced precision radiation.
The other thing is that she did the most rounds, the most rounds of chemo with the highest dose they could give her.
Please describe helpful tips for chemo day
We found that it was easier for her if she fasted the whole day of chemo. She did well. She didn’t get as nauseous. It just was much easier process. SO she planned to fast. And of course, it was all her decision.
I, sort of, supported it, but I didn’t in any way, sort of pushed her towards that. It was much easier process. She took her water with molecular hydrogen, and she didn’t eat again usually until the next morning.
Can you describe how you dealt with the side effects?
The first symptom that she had was a very distended belly, very bloated and she felt very uncomfortable.
When she came home after the first chemo session, all we did was one coffee enema, which was organic coffee, specially made, so it’s not concentrated as a normal coffee. Put in an enema bucket, a liter of it and connect it to the rectum, and she would stay in a particular sort of all force kind of position and I helped her with it.
The coffee stays connected and it goes in as much as she can accept, and then we put a timer, with like something she could look at, and we timed it for 15 minutes. If she had gases or she felt uncomfortable, the level of the coffee goes up and down, it helps the body to adapt to it, it’s less extreme.
The chemo was every 15 days. So, the day after the chemo, she would do one coffee enema, and would feel so much better, that she would ask me for it and remind me.
As we were coming back from chemo: “remember we’re going to do it? Tomorrow morning”.
It was so clear to her that it was such an important part of the work that we did.
We started her off with the Cannabis Resin, which we called the ’black drop’.
We didn’t involve her with any details about it. But, I explained to her,
that she was taking such a strong treatment at the hospital and we had to give her a strong treatment at home too, to help her balance.
During the first days of the diagnosis, there was a family friend, named Dr. Jeffery Hergenrather, who is an international expert on cannabis for cancer for children, he said, that the big guns for this cancer, are chemo and cannabis.
She also did Juices. A combination of celery and carrots freshly squeezed with a juicer, every morning. We would get little jars in the refrigerator, and she would drink about a liter in four parts.
What the juices helped us with were the vitamins, minerals, and nutrients without the insoluble fiber of the raw vegetables.
Because the fiber, locks out the nutrients, and a healthy intestine can separate the nutrients from the fiber,
but a person going through chemo will not be able to do that. They will have to get rid of all the nutrients with the fiber, which they really can’t tolerate or process.
She was very thin when we first got her into the hospital. Cause she had started to lose weight due to the cancer.
Actually, her weight stabilized, and actually, by the end of her 6 months in chemo, she had gained weight, had pink cheeks and she had not lost her hair. She didn’t have any of the mouth sores, her white blood count never went down.
She did get radiation burns on her neck, her skin peeled, she felt a bit nauseous with the radiation, at times, but that was it, and again, she didn’t have any carry over or side effects, once she was out of treatment that day.
What was the post treatment follow up your child received?
Her last treatment was in December 2018, she had pet scans every 4 months, and then every 6 months,
and she has been released from pet scans. They don’t plan on doing anymore pet scans.
After that, in January 2019, she started radiation.
What were the main crossroads you encountered?
What I see now, Chemo and radiation are very powerful, strong tools.
There are many tools you have available that you want when you have a sick child.
Instead of discounting a tool, it’s so much more effective and worthwhile to ask- how can we use this tool the best,
and help it to work as well as possible, and then to help it to leave when it needs to leave.
What I found with my daughter, and I think is true for a lot of kids, when the parent explains things to them,
in a way that they can understand, it helps so much for them to feel protected and supported by the family.
The role of the family
We really kept her in a bubble. We made our family a very protective body around her. We didn’t really interact with that many people, even extended family.
Because cancer is so triggering to people, and especially a cancer of a child.
We noticed that her all experience, of her process, she was looking in our faces to see what her experience was.
To see if this was scary, to see if she was ok or not, she was constantly looking at us.
We couldn’t pretend anything, we had to be ok, and in order to be ok, we had to create this normal,
protective environment, for her, that we could manage, but a lot of other people couldn’t,
and instead of risking it, we just didn’t include them in our process. Sort of close at hand.
That was incredibly important. One time, during the early treatment process, she came home and she was crying,
and she said the kids at school are asking me if I have cancer?
And I don’t know where I came up with this, but I said to her, directly-
My dear, you don’t have cancer, you have a life, you have a family, you have your experience, but you are passing through cancer, that’s a very different thing.
This is a process. It’s not something that you have and it’s not something that you are.
Then I was able to go and speak to her school about it, and they actually did this little assembly in the school, when Nayeli wasn’t there, and they talked to the kids about it. And ever since that moment they were able to use the same language that we used.
When she asked me whether she was going to lose her hair, I said: “you could”, your hair wll just go on vacation, and so are your eyebrows maybe, but they will come back, it’s not something you need to worry about, it’s not going to be permanent, it’s a possibility. Just hearing that, it made her smile, and I think she just got the sense she was being contained and supported in this process and not just exposed extremely to the version of the hospital or the doctors, which was important for us.
How is child doing today?
She is a radiantly, healthy, well-adjusted wonderful child, absolutely in every way.
The most important thing that I want to share with any parent- any point of the treatment, any point of the diagnosis, it doesn’t even matter how advanced, there always something to do.
When the parents feel empowered, they have things to do in their capacity, it’s actually so healing for the child, because an empowered parent has so much capacity to contain and protect and support their child, and that’s what I want to do. To help parents to be able to support their children. But the parents who don’t have support, it’s very hard for them to offer that support.
As a family, we learned about each other and about ourselves in a way we could have never imagined learning.
I used to fear oncologists, and fear these big hospitals, and you know, for good reasons- it was scary.
But now, I feel like, as a parent who gone through this process, I have information who is useful for them too. We have to find our bridges. We have to make bridges wherever we can, and that’s the biggest thing that I learned.