Denise's Story: Caring for a Child with Neuroblastoma

Recorded November 27, 2001

Listen With 25 minutes, 44 seconds.

Username: mommabear

Okay, my name is Denise. I am 32 years old. I am married, but I'm not married to my daughter Jessica's father. She has a stepfather whose name is Aaron. We live in Lompoc, California, and Jessie is an only child.

Jessie Diagnosed with Neuroblastoma

Starting at the beginning, in January of 2001, to be specific January 24th, 2001, Jessica was diagnosed with neuroblastoma stage IV, which is cancer of the central nervous system. Leading up to that, about two weeks prior to diagnosis, she was very pale, dark circles under her eyes, and kind of listless. But being winter, it was cold and flu season, we kind of figured it was just cold or flu or something. After a week, we took her to her pediatrician and he did blood tests and told us that she was anemic, but because of her counts at that point, only her red blood count had dropped and platelets and white count were still up where they needed to be. So he thought that she had had a virus or an infection that had caused her to be anemic. As an afterthought, he said, "Wait five days, we'll do the test again and just verify that she's okay."

After the five days we took her back. They did a blood test and we did the blood test in the afternoon, so at 9 o'clock I had the pediatrician on call from the hospital call me and told me that her counts were dangerously low and I needed to take her to a hematologist the next morning. At this point I had absolutely no idea that a hematologist was also an oncologist. I thought she was anemic, and I was panicked because my baby was anemic and might need a transfusion. I worried about that all the way down there.

When we got into the office, there was a doctor, two nurses, two social workers, one for me, one for my daughter, and the nurse that's in charge of kind of correlating all of her care. I looked around the office and saw all of the flyers and pamphlets on all the different cancers, and at that point I realized I was in an oncologist's office. Our doctor looked at her and told me that she wanted to do a bone marrow biopsy just to see what was going on, and I thought that we were [laughing] going to schedule for later. She looked me in the eye and said, "You don't understand. Your daughter is very sick and she is going to be admitted to the hospital now."

So she was admitted to the hospital, and the bone marrow biopsy was scheduled for the next morning. Almost within hours of being admitted to the hospital, she was having what they determined was bone pain in her leg, and they had her on pretty good doses of morphine. The next morning, they did the bone marrow biopsy and [laughing] the doctor walked up and just looked me straight, flat in the eye and said, "We found a malignancy." And of course, in complete denial, I said, "A malignancy? What do you mean?" [laughs] And she said, "I mean cancer. There are cancer cells in her bone marrow." And still trying to get a grasp on it, I asked her, I said, "So, this means she has cancer?" She said, "Yes." And she said that because the cells were little blue nucleus cells that it looked like it was neuroblastoma, and because the only cancer I had ever really heard about too much was leukemia. I asked her if it was like that, and she told me flat out, "No. It's worse."

That day my daughter had bone scans and CAT scans. They found a bone lesion in her left upper arm and they found a tumor. The tumor was approximately the size of a tennis ball. It was in the adrenal gland on her left kidney. So this was the fateful day of January 24th.

Surgery to Remove the Tumor

And on the 31st of January, Jessica had her first surgery. They put in a central line and they removed her tumor. They were able to remove the entire tumor. It was still in the area that it had started and it hadn't moved too much, but she had 50% bone marrow involvement. The first week was basically--I actually don't remember a whole lot of it now. The hardest part, right after the doctor told us what was wrong, and she told us right in the hallway outside of Jessica's room, walking back into the room, myself, my mother, my husband and my ex-husband, everybody had tears in their eyes, and Jessica got very agitated and started crying. And she said, "I want to go home. I don't want to be here."

So I told her that everyone had colds. Sent everybody out of the room and I composed myself, and from that moment on our law was, if you're going to cry you do it somewhere else. You don't do it in front of Jessie. And I didn't cry for four months, but we'll go into that a little bit later here.

Jessie's surgery, as I said, was on the 31st of January. They waited five days after the surgery for her first round of chemo. The day we started chemo I called a local barbershop and I had a woman come to cut Jessica's hair. Her hair had been really long, almost down to her bottom. So I braided it, and they cut off the braid and I saved it, and we cut her hair in kind of a real short pageboy--and just kind of buckled down to see what was going to happen next. After I think she had already had one day of chemo, I was reading one of the 25 pamphlets that I had been given from the social workers, and one of them was about talking to your child and telling them what was wrong. I'm reading this book and its 10 o'clock at night, and one of the things that I read was that the longer you wait to tell them, the more time they have to come up on their own with reasons. And that if they come to the conclusion that it is because they have done something wrong or that it is some kind of a punishment, that it's really hard to get that out of their mind, even after you explain it.

Explaining Cancer to a Young Child

So I talked to my husband for a little while and kind of got together on a story, and we sat down with Jessie and we asked her, "Do you know what's going on?" She said, "No." We tried to explain about cancer. We told her that she had cancer and we told her what it was called, that it was neuroblastoma. We're trying to explain to her about chemo, and Jessie being 5 years old and very into Pokemon, what we told her was that her tumor was kind of the lair or the hangout for Team Rocket, which anybody with young children will know. [laughs] Team Rocket are the bad guys. Ash and Pikachu are the good guys. We told her that the doctor had got in and he had gotten rid of Team Rocket's hideout, but that in her body and in her bone marrow that there were some bad Pokemons still hiding--that they had gotten out before they had taken the hideout. And that through chemo we were going to send Ash and Pikachu in and they were going to thunder shock, and they were going to do battle with the bad Pokemon, and they were going to get rid of them. Another thing with the Pokemon cartoon is that sometimes when Pikachu thunder shocks really big, Ash gets kind of shocked and jolted, but he is always okay. We told her that when Pikachu went in there, and Pikachu was doing his thunder shocking, that she might get a little shock too, and it might hurt a little bit, but it was going to make her better.

She seemed to--I mean she understood, and she understood about sending in Ash and Pikachu, and when she first started feeling ill, which was actually almost to the end of her four days of chemo, she told me that she felt like Ash and Pikachu were in there and they must have found somebody because they were [laughing] thunder shocking and she could feel it! But this gave us a basis to go back to when we needed to explain things about chemotherapy. Our theme was always Pokemon. And in explaining it that way, she always seemed to be able to grasp at least the basics.

Chemotherapy and Radiation

After the surgery, we had three rounds of chemo, and with the neuroblastoma they switch back and forth. We're on COG protocol, which is the Children's Oncology Group. She started out with Adriamycin, then vincristine and cyclophosphamide, and her second round was etoposide and cisplatin, and her third went back to the vincristine, Adriamycin and cyclophosphamide. They did a hearing test, a baseline hearing test in advance of all this, because the cisplatin has a history of affecting hearing, and after the first round of the cisplatin, we didn't detect any difference at all. After the third round of chemo, and they were doing one every 21 days, she had one month of radiation. It was radiation aimed specifically at her arm where the bone lesion had been, and at the tumor site. They gave us all kinds of side effects to look for, for the radiation. That she was going to be nauseated. She would have diarrhea. She would have mood swings. They told us everything. Jessica sailed through radiation. She did not have any problems. She wasn't sick. She grew hair. Radiation for us was kind of a break.

After the radiation, she went in for round four of chemo, which was again the etoposide and the cisplatin, and at this time we did notice a difference in her hearing. In one day she lost 35% of the high-frequency hearing in her left ear. But we had decided at that point that because of the nature of the beast with neuroblastoma, and that the best chance was to hit it hard, that I would prefer to send her to college with hearing aids than not be able to send her to college at all. Also, right before her fourth round of chemo, we let her dye her hair purple, and it was going to fall out anyway and it was just--it was fun. She liked shocking people. She was very entertained that her grandmother was [laughs] very surprised.

Stem Cell Transplant

After her fifth round of chemo, after the 21-day waiting period they did scans to make sure that she had no evidence of disease. She went into transplant clean. They did a peripheral blood stem cell transplant.

The stem cell transplant, it was autologous, which meant that she donated to herself. The stem cells were collected after her second round of chemo and they were preserved. We went in July for her stem cell transplant. At that time they gave her a large dose of carboplatin, which is a very close cousin of the cisplatin and also has problems with the hearing. They gave her etoposide, which also goes under the name of VP-16, and they gave her melphalan, which apparently that stuff--I mean, it was so bad that they delivered it in a syringe that was--the syringe had lead around it so that the nurses would not be exposed to what was in the syringe. One syringe of the stuff over thirty minutes, and that stuff hit her hard. We detected or noticed a serious decrease in her hearing over transplant. Also for transplant she had--we checked into the hospital on, they called it "day minus six." She had four days of chemo and two days of rest and on day zero they gave her back her stem cells.

Jessica had a really hard transplant. She had a lot of problems with the mucositis, the mouth sores, but she engrafted on day 14. Apparently they had expected her to engraft on day 7 to 10. The nurses who worked on the ward told us usually it was day 12. On day 14, if she hadn't engrafted, if her counts hadn't shown an improvement, they were going to infuse her with the rest of her stem cells on day 15. So she came through just in the nick of time, and her counts started coming up. When they started coming up it was very slow. Jessica did not get discharged from the hospital until day 74 of her transplant, which is unusual. Our doctors told us that apparently Jessie was trying for a record, and Jessica still as of this date, which is November, I believe, 27th, she still does not eat. On day 30 of her transplant they put a gastric tube in, and she does feedings through her gastric tube. She will drink water, sometimes juice, but she does not eat. And apparently with neuroblastoma that is not unusual. Our doctor told us basically to not make it an issue. That part of it is for some reason the neuroblastoma kids don't go back to eating so quick, but another part of it is, is of everything that's happened to Jessie in the last year, none of it was in her control. She couldn't say, "I don't want chemo." She couldn't say, "I don't want GCSF shots." She couldn't say, "I don't want transplant." But she can tell you, "I don't want to eat." And so they believe that part of it is that that is her power source. That she's not going to eat and you can't make her. So we don't try, and that's just hers. When she wants to eat she will, and until that she gets the nutrition that she needs through the gastric tube.

Chemo's Effects on Jessie's Hearing

Also today was a big day because Jessica got her hearing aids today. They feel that her hearing has stabilized. She has lost 50% of the hearing in both ears, high frequency and mid range, and she is ecstatically happy with her hearing aids.

I belong to a kind of Internet support group for parents of children who have neuroblastoma, and of the children that are at Jessie's point and beyond, I'd say about 30% of them have hearing aids or some form of hearing assistance to help them.

And kind of a background with the cisplatin and the carboplatin, what it does to the hearing is inside your ear or your ear tunnel, I'm not sure the exact place, there are little nerves that actually come out of the skin and stick up like a hair, and they're called cochlear nerves. Carboplatin and cisplatin affect them during chemo like the hair on their heads. They cause some of them to fall out. They will never be re-grown. Her hearing did a big dip to where she could almost hear nothing, and it has come up, but they're pretty sure her hearing is pretty stable where it is. As far as we're concerned, that it the absolute least of our worries. Hearing problems are not fatal. She has hearing aids, which she is extremely happy with. They let her put purple sparkles in the little earpieces and she is a happy kid. We're almost at day 100. She is growing hair. She actually has enough hair to match her father's crew cut. We're battling a little bit with the weight. She is underweight, but we're working on that. The fact that she doesn't eat does have some [laughs] effect on that.

And at the moment Jessie has already, she has had her three- month out scans which have come up negative. She has, it's neuroblastoma term, NED, no evidence of disease. They don't really use the word remission. She is on medication, its cisretinoic acid. A trade name for it is Accutane™. It's an acne medicine that when they did the clinical trials for this acne medicine, they found out that one of the side effects is that if you have cancer cells in your body it will cause them to mature. A mature cancer cell is otherwise known as basically a lump of fat. It won't do anything. The cancer cells will only divide and do damage when they are immature. The thought behind this is that if there are any cancer cells that are left behind from the transplant, or any that try to pop up after transplant, that the Accutane will get a hold of them before there is too many and will mature them.

She is going to be on this medication for 18 months. She takes it for two weeks out of every month. The traditional protocol for neuroblastoma is to only do it for six months. The reason why Jessie's doing it longer is because since she had such a hard time in her transplant she was not available to do any of the studies for follow-up care which they have antibodies and vaccines for neuroblastoma that are in phase III clinical trial, but she would have had to be healthy enough to start on day 46, and she wasn't. For neuroblastoma, the first 18 months is the highest rate of relapse, so Jessica's oncologist has decided to just keep her on it for the 18 months, and we can actually discuss keeping her on it for a little bit longer if we wanted to.

At this point Jessie has, she has responded really well to treatment. We're really happy with how she is doing now, and we have our fingers, legs and eyebrows crossed that she will continue to have no evidence of disease. I do know that there are a lot of options available for children that relapse, but we are cautiously optimistic, and she is starting kindergarten on Monday.

The Benefits of Online Resources

About four months after Jessie’s diagnosis--it was after the first three rounds of chemo, we were kind of settling down because we were about to start radiation. Everything had kind of just started coming to a head and I was just tearing my hair out but I was still holding on to the "don't cry".

I asked my mom if she would take Jessie overnight. She took her on a Saturday morning and I was going to get her back on a Sunday afternoon. And the one thing that I hadn't done since Jessie got sick was look on the computer for any information. My oncologist had told me right away "Don't. Don't look on there, and if you look for any information regarding neuroblastoma, to disregard anything that had printed more than 5 months previously because of the strides that they've taken." But she said "Just don't, don't look." And so on this weekend, Jessie went to my mom's, and I started looking. And every sight that I came on that had anything to do with neuroblastoma always started with a memorial page. And then I got into--I have no idea what the website was but it had a list of about 35 or 40 kids with neurobalstoma with brief histories, or like a synopsis, of the children. I looked through and better than half, the last sentence was, "died on this day."

And I started crying. Since I was already crying, I just kept looking and I read everything I could find. I'm very glad that I did not read everything I could find in the first couple months. One of the things that I had come across was--actually it's through ACOR [Association of Cancer Online Resources], they had a web list. And the one that I joined is neuroblastoma, and it is all parents, grandparents, friends, relatives, cousins, sisters--its people that are all in some way attached to a child that has neuroblastoma. These people--you know, it is by email and I've never seen any one of their faces, but I could type in that, "Jessie reacted this way to this treatment," or "what do I do to get her to take this medication?" There were 50 people who within a day had answered me. A lot of them had Web pages with their children and you could go and you could see how they had handled it. But it was all people who had been there and done that. Whereas friends and family of mine, they could sympathize, but they really couldn't say "I know what you’re going through," or "I know what you mean." This is 250 people who know what I mean. In the months that I've known these people, better than 6 or 7 children have died. But better than 6 or 7 children have lived, and lived with no relapse.

There are many people who are 2 months behind me in treatment. There are people who have actually reached out and I have gotten to answer their questions and talk to them about what they have ahead of them. It has helped me. I think helping people that came behind us almost helps more than the people that had gone before. It gave me a feeling that I actually did have a little bit of a handle on this, because I sometimes felt like I was just treading water, and that I didn't know what I was doing and I had no idea. And just felt very powerless. And in talking to these people who where behind me in treatment, first of all I found out that I knew a lot more than I thought. I had made it through a lot more than I ever thought, and that helped but also the people who have been there before me, to where I could ask them. Before my daughter started taking Accutane, I had a list of side effects and problems that 50 kids had had. I knew what questions to ask my doctor. I knew about certain medications that could be used that weren't actually traditional protocol, but they were in addition to. I could actually intelligently talk to my oncologist about them. It gave me a list of questions to ask and that has helped me a lot.

Also, I have my husband, and my family has been a wonderful support group. Just being able to be there for Jessie and to love her and hold her and see her smile makes it all worthwhile.

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