Matilda Jade Dumaine
Matilda Dumaine
5 years old
Stage IV Neuroblastoma, in treatment
Redondo Beach, CA, United States
http://www.caringbridge.org/visit/matildajade
Our Story
Our story is a typical Neuroblastoma story; that of having a happy, healthy toddler one day and then the devastating words, “Your child has cancer,” seemingly out of nowhere.
Matilda was born on 3/25/03, four minutes before her fraternal twin sister Isabel. Both were under 5 lbs, but they were 37 weeks mature and there were no complications. During their first nine months Izze struggled with eating and sleeping and had problems with reflux, but Matilda happily thrived. Born two inches shorter and several ounces lighter, she soon outpaced her sister in both height and weight She slept well, and from the time she could babble, she greeted every morning with an exuberant “Ha-Dah!” whereas Isabel woke often and always with a cry. Both were smart and adorable, but it was Tilly that we considered independent and easy, and Izze “high-need.”
We were in for a chaotic and blurry two years of “Baby 1, Baby 2; always lots and lots to do!” Then, suddenly, the girls turned two. Yeah! Taking care of them started to get easier. We started to have fun! The summer weeks went by and it was a good time in Twinland. I started to relax and actually sleep. The first sign of trouble went unrecogonized: Matilda had been fussy for a couple of weeks. Normal toddler fussy, just not usual for Tilly. On Aug 30 I noticed that she was limping a little. I checked her feet and legs; touching them did not seem to hurt her, so I assumed “nothing serious.” But… Over the next two days her limp became more pronounced. We started to be concerned, but still in a vague “hmmm, maybe we should take her to the doctor?” kind of way. We had a new pediatrician we wanted to interview with, so we took both girls in to meet him on Fri, Sept 2. Because we thought she had recently had a virus, he told us it was probably transient synovitis in her pelvis; if it was, that clears up within a week with no intervention. He emphasized that we should bring her back in a few days if her limping persisted.
It was the Labor Day holiday, and we went ahead with our plan to take the girls on our first “practice camping” trip to our local Wilderness Park. Only two miles from home, it was perfect for a first introduction to sleeping in a tent and the fun of camping. But Tilly was fussy and clingy and had to be carried most of the time. She seemed unwilling to walk on the uneven and unpaved ground and even fell once. But she did enjoy the sleepover in the tent and, as long as she was carried, she was happy. In spite of having to carry her most of the time, we considered the outing a happy success and were looking forward to more outings during September, the last month of summer.
As it turned out, that holiday weekend was the last peaceful moment of our lives. By Tues it was obvious that Matilda had not improved at all, so I brought her back to Dr Nguyen. He said he’d like to get her in for x-rays with a pediatric orthopedist, and put in a call to Dr Cunningham of Miller Children’s Hospital. I went home with the girls and we waited for a confirming call. Naptime came first tho, so I put them to bed. Then the call came and, not wanting to wake twins early and drag them into a hospital, we made the appt for the following morning. Five minutes later, the gal called me back and said that no, Dr Nguyen insisted the x-rays be taken TODAY. Uh-oh. Naturally apprehensive, I call Daddy and tell him he has to come home from work to go with us.
Dr Cunningham examines Matilda and tells us it probably IS synovitis, but orders four x-ray views taken just to be safe. The tech misreads the orders and only takes 3 of the 4 views, so Dr Cunningham reads those; they appear fine, he tells us, sending us back for the 4th view, which he will see first thing next morning. We go home thinking everything is fine.
The next morning Dr Nguyen’s office calls me and requests that I get a babysitter for the girls and come into the office with my husband ASAP. They won’t tell me more than that. Feeling like I’ve been hit in the stomach, unable to wait, I call Dr Cunningham. I was right to think he’d give me more info right away.
The 4th x-ray was NOT “all right”; it showed spots in Matilda’s knees and pelvis; "Something is eating away at her bones. " They were arranging for us to be seen in Dr Finkelstein’s pediatric hematology/oncology office the following day, and that we should expect to thereafter check into Miller for a stay of at least several days.
That afternoon, we leave the girls with my sister to have our consult with Dr Nguyen. He shows us his copies of the x-rays; he says “this is bad,” as he points to shadowy areas in Tilly’s knees and pelvis. Although we know we have a serious problem, we don’t know how serious until his wife/office manager tells us, “Pray for leukemia”! That may sound harsh, but you had to be there; she was offering hope in a “ESL” kind of way. Because, after all, they have made tremendous strides in the treatment of many types of leukemia; it is very often curable!
We go home in shock. My guts and my heart are twisted in knots. Daddy is hopeful that it might still be determined to be nothing so serious, but in my soul I know something terrible is coming. I am living every new mother’s nightmare: “something is wrong with my baby.”
The next morning, as Isabel blithely departs with Auntie Vicki for a solo visit, Daddy, Tilly and Mommy head in the opposite direction into the unknown. For the first time ever, we are not going somewhere all of us together. I would not see Izze for the next 5 days.
Dr Finkelstein’s office is very busy. When it is our turn, Matilda has her vital signs taken and her finger poked for a tiny sample of blood. Later, the term fingerstick becomes a part of our vocabulary. During her examination, I asked Dr F how you can tell anything from such a small blood sample, and he answers, “It tells me everything I need to know right now.” Amazing.
Dr F is kindly, grandfatherly, wonderfully wise and intuitive, and he even gets a smile out of Tilly who has by this point emotionally retreated. He does a “usual” exam of Matilda, and he asks us a lot of background history questions. He then checks on the blood sample. He returns, sits down, looks into our eyes and quite directly says, “We have a problem. We don’t know what it is, but we know it’s very bad.” He then gave me what is probably his standard speech, but it still helped me to not fall apart. He made me sustain eye contact with him while he told me about the mountain we have in front of us; that it would be full of twists and turns, ups and downs, etc. But that we were going to climb it. Just as I thought I would fall apart, he said, “Look at me. Look right at me. I am not telling you that you are going to lose your daughter. If I have to, I may tell you that sometime in the future, and I will tell you that, but I am not telling you that NOW. Right now I’m telling you that there is a mountain in front of you and that you’re going to climb it and that we are going to be right here with you every step of the way.” Somehow, I was comforted, even in the midst of my despair.
That is how our story began. From there we checked into the hospital. 10 days after Tilly first started walking “funny.” Five days of gut-wrenching fear, sleepless nights, and so many scary tests for Matilda passed in a Twilight Zone. First, a bone marrow aspiration (Thankfully showing clean). The CT scan showed a 10cm mass in her abdomen. Upper body x-rays and a full-body bone scan showed that she had lesions in her pelvis, knees, both sides of her ribs and one shoulder. On the 5th day, Sept 14, she had a three-hour surgery to biopsy the abdominal mass and insert a Broviac double-lumen central line into her chest. Before she even woke up, the biopsy result came back and coincidently so did the urine analysis; now the beast had a name: “StageIV Neuroblastoma, high risk.” She started chemotherapy the very next day.
That first hospitalization lasted 23 days: 5 days of tests, 5 days of chemo, 10 days of fevers. They gave us our “roadmap” outlining the upcoming treatment and told us that her type of NB had very low prognosis; maybe 30%, maybe less. They didn’t really explain the odds of relapse; it was too soon. Many don’t make it through initial treatment.
From Sept to February, in six months: Six rounds of chemo, surgical replacement of her central line by the thicker MedComp line, a stem cell harvest, a hospitalization for fevers, abdominal surgery, and a hospitalization for a blood infection. All leading up to March 2006: stem cell bone marrow transplant. 30 days in isolation.
On their 3rd birthday, Isabel was allowed to sit in the doorway of Matilda’s room. They got upset if one of us inadvertently blocked their view of one another. But that has passed and Tilly has recovered wonderfully and is regaining weight. She has also completed 12 sessions of radiation, and now the next phase of treatment is a six-month drug regimen.
Normal is gone. Our girls play at “doctor and nurse” with more realism than your average toddler, that’s for sure. And they play “hospital” more than they play shopping, cooking or any other common activity. But that’s how kids cope and integrate their experiences, so it’s a good thing, I guess. And we’ve been lucky. Yes, lucky. Because our pediatrician was aggressive and on-the-ball. Because Matilda has responded very well to her treatment. Because her bone marrow aspirations were negative. And because we live in L.A., near to major children’s hospitals and renown oncologists. And even simply because Matilda has now survived the bone-marrow transplant because some children just don’t.
And even though she currently has shown “No Evidence of Disease,” we have to live in fear of this monster coming back. Because it does. Today, as often as not, it still comes back.
We cannot let that happen. Mommy, Daddy and Isabel need their Tilster, and the world needs Matilda Jade Dumaine.
Thank you
Thank you so much for contributing to the CNCF's heroic effort to cure Neuroblastoma. Every donation supports the research that brings us closer to the cure we so desperately seek. You have our deepest gratitude, forever. Brian and Rachel Dumaine