Back to school, back to the busy life after the summer break, except for Jayson. It’s been almost a year since a tsunami hit us and when I say us, it’s really the whole family and everyone around us, because who could have imagined that a little boy of only 6 years old, full of energy could be struck by cancer!
The school started here just a week ago, Jayson and his sister are at the afterschool program until I get home from my job. That day, the crows fly low, they almost come crashing down on my windshield on the way back to Saxon. I don’t know if it was a hunch, but I remember saying out loud; birds of doom !!! I did not know I had guessed so right. Arriving at the school, the teacher asked me if I had noticed anything special in the morning about Jayson and then she says: “Jayson is yellow, “I thought, what did he do now? Because, yes Jayson is always full of surprises, but no, not this time, her tone is really not a joke. Jayson then comes up to me, yes, he really is yellow, all the way to his hairline. The teacher is worried and wonders if there are any cases of hepatitis in the family, I tell her no. The director joins our discussion and advises me to go to the doctor quickly, because even the whites of his eyes are yellow. I immediately call the pediatrician and take the road to Martigny to go see him. In the car my daughter tells me that during the dinner break, her brother was weird, he sat instead of playing as usual. Really weird! she said.
The pediatrician, then begins with some questions: how is he eating? Did you go on holidays abroad? Since when is he so yellow? Is he tired, and since when? Have you been to the beach? Yes, four days in Italy, that was just two weeks ago. The hypothesis of a hepatitis virus is raised. The pediatrician request a blood test and advises me to keep him at home while awaiting the results. Jayson is afraid of the needle but manages to control his tears. That night, he sleeps at his Grandmas, so cool, he says, tomorrow is Wednesday and I can watch cartoons on TV instead of going to school. I feel ok knowing he’s with my parents but my mind can’t rest, I keep trying to figure it out and not panic, and I think about it all night. The next day I’m at my work but the thoughts wont leave me and I end up calling the office to tell them that a week earlier I had given him some medicine against intestinal worms and the syrup was very yellow, maybe it was a side effect, or an allergy?
No, I am told, it can’t be that, and anyway they were just about to call me me to come back to do more tests. I immediately leave my job to go get Jayson at my parents’. The pediatrician tells me that Jayson has an extreme iron deficiency, and keeps asking me about his diet and tells me they will do additional blood tests to identify the cause of this anemia. This time, Jayson is less cooperative, but we get through it and then we wait.. The doctor comes back to us and I read on her face that something bad is coming. He tells me that the lab sees abnormal cells in the blood. Abnormal cells! I know only too well what it means. Cancer? Leukemia? I have a degree as a pharmaceutical assistant and my mother had breast cancer when I was pregnant with Jayson, so I am familiar with these terms. The pediatrician is still waiting for some results but I am told that we will most likely have to head to the CHUV hospital in Lausanne for a bone marrow biopsy because that’s where we will find the answer to this mystery. I call my husband and ask him to be ready to leave work as soon as the pediatrician gets the green light from the CHUV for us to go. We have dinner at my parents with my daughter and I explain what is happening, I try to reassure her that it is a good hospital and at least that way, there will be no doubts. I tell my boss at work that I’ll keep him posted. The phone rings, that’s it, the CHUV is ready for us. I try to reassure my daughter and my parents and ask them not to worry too. In the car it’s total silence, I’m thinking and trying to prepare my husband, too, because deep down I know, we’re not going to CHUV for a short check up, and I’m already thinking it’s leukemia. I’m not a doctor, but I feel it.
We are greeted warmly at CHUV and Jayson does not seem worried, there are even tractors, he loves tractors! We drive to his room and are explained what tests will be done that day. He’s scared but lets himself be tested and we congratulate him for his courage. The oncologist comes to see us, she seems friendly and I feel I can trust her, because yes you entrust your child’s life to the people here! She explains the plan for the next few days, and that evening Jayson receives his first transfusion. I stay in the hospital with Jayson and my husband goes home to reassure our daughter and family. The next day, my husband is back very early, and we are led to the 5th floor for the biopsy. The anxiety can be read on our faces, we try to hide our tears so as not to worry Jayson. The nurse who takes care of him is a teacher and Jayson chats with her. Leaving him is terrible but we are powerless and the waiting is hell. They finally call us and we run to see him again, they reassure us, everything went well, but I want to see him, what did they do to him?
What’s next? Because I see there is an external catheter attached to him, are they planning chemo? Jayson wakes up and wants to know, yes know everything, as always, he has to know everything: So we explain to him and we promise him that we will always tell him everything. He has the right to know and we need to tell him. The next day, we get the official diagnosis, no it is not leukemia, “yet” – there are abnormal cells in his bone marrow , it is called Myelodysplastic syndrome MDS which quickly turns into a fast-growing cancer of bone marrow cells called acute myeloid leukemia.
The sky is falling, in the small office where the doctors have met with us to give us the diagnosis, my throat is tight, I’m trying to contain my tears but it’s too much to ask, I look at my husband and I decide to ask some questions: what are his chances? Is it possible that I gave him this disease during my pregnancy, because I was stressed with my job and caring for my mother who had cancer, or something else I did? Yes this question is asked by all of us cancer moms but I am reassured by the oncologist that no, nothing I did during the pregancy could possibly have caused this. It is nobody’s fault and there is no reason or cause.
This makes me start wondering: Why? Why him? Why us? Why now?
They start talking to us about a bone marrow transplant, because it’s the only chance of a cure. And then we have to explain all this to Jayson, and soon we are looking for simple words so that he understands what is happening in his body
Jayson does not need medication, no medicine can cure our son, so his health is maintained for several months thanks to the generosity of blood donors, through regular transfusions that keep his blood levels up.. As the weeks and months go by our lives are governed by his hemoglobin level – we learn to read the signs that lead to the need of a new transfusion. The back and forth to the hospital are very frequent and Jayson must often miss school, but he still goes to the gym, plays football, and enjoys the outdoors.
In October, the results of genetic tests tell us that Jayson and his sister are not compatible, as was hoped, so she can’t be a donor. Our daughter is very disappointed and the stress becomes worse, but, once again the oncologist reassures us and tells us that we will use the stem cell donor bank and that Jayson’s present condition is reassuring that we are not in an urgent situation .
The end of the year approaches and we had promised Jayson for Christmas, we would go to Portugal. Once again, the oncology department at the University Hospital goes above and beyond to make sure we can travel. I dread the trip and the distance from the hospital, because even though the CHUV is not next door, it’s not too far, and I know and trust them . But it’s a change of scenery, a chance to try to relax, and get some energy before whatever comes next. . During our vacation, we end up in the oncology service in Porto because Jayson has a toothache. I call the CHUV overnight and follow their instructions to the letter. On that day we are supposed to celebrate my father’s 60th birthday with the whole family, it’s a surprise! Jayson needs several blood tests, and it’s a difficult day at the hospital. His hemoglobin level has fallen and we want to be reassured for the return trip in Switzerland. The oncologist there refuses to give him a transfusion for “comfort”. I am not reassured, but I cant change it, the hemoglobin transfusion limit is not the same there as at the CHUV and Jayson seems normal otherwise.
Jayson has good memories of that hospital , the lab technician gave him lots of bandages so he could show the Swiss nurses. On our return, we have an appointment in Lausanne for a check and this time Jayson is transfused. School starts again, but Jayson is struggling to catch up, he does his best and his teacher is very sweet and attentive to him. Jayson also has difficulty dealing with his friends’ reaction to his illness and a nurse is sent to talk with the class. Jayson is very comfortable, he wants to show how a blood test is done. His friends are impressed with his courage, and he’s quite happy. But it turns out it’s his last day of school for the year. The nurse calls me later to give me the results of the formula, the hemoglobin level is good, no transfusion this time, I tell him when he comes home after class. He is very happy but it’s short-lived, within 5 minutes of his arrival at home, the phone rings, it’s the oncologist. There is a high percentage of abnormal cells in today’s test. She tells us they have to do a bone marrow aspirate quickly to identify the reasons for such rapid evolution. Great, a new storm is forming… We knew the myelodysplastic syndrome could lead to acute leukemia. The time has come! That evening we are all overwhelmed, my daughter cries, and it’s a big blow to Jayson. I take him in my arms and explain why we have to go back to the hospital right away. He looks me straight in the eye and says , “no I can’t, my friends will be too sad if they dont see me tomorrow at school. ” Typical Jayson, always thinking of others. The nurse had explained to his classmates that if suddenly he didn’t show up for school, he was probably at the hospital.
My daughter is fed up too, she says “I’ve had enough, you know, since my brother had been sick we have not had any time without stress.”
Yes, the stress just keeps getting worse, how will we manage, the hospital is so far away. We leave early, my daughter stays with our neighbor, the separation is unbearable, the kids hug and don’t want to part. But, nevertheless, we have to go.
And so we begin the next battle. This time to an even more distant hospital for the bone marrow transplant. We stop counting the miles, we hold back our tears and our pain to accompany Jayson to a renaissance, because yes a new life began on May 22, the day of the bone marrow transplantation and the next day he celebrated his 7th birthday in the isolation room, reserved for transplant patients. Finally, 100 days later, he could come out. Nothing is certain yet, because the recovery after a transplant is long and challenging, but what we know for sure is that right now his new bone marrow shows no evidence of disease. His immunity is extremely fragile, but we are confident that he will recover completely, we’ll get there, because Jayson’s thirst for life is much stronger than all this and the miles don’t matter, even though since his release from the hospital we have to make the trip back once a week. The thing that keeps us going, keeps the fear from taking over, keeps us going despite exhaustion, is called HOPE. Jayson’s eyes shine with hope like fireworks. This is the story of a real hero; our Jayson