Julia and her family visited Ben's Retreat from March 11th.
"First of April, 2022. Little did I know, how our lives were about to change forever.
How ironic is it to be told on April Fools' Day that your child has cancer?
The shock was so great that for a few seconds, I thought the doctors might be joking... It did not make any sense that pneumonia and a pleural effusion could have "transformed" into cancer! How?
But no, it was not a joke. At the age of 15, Julia was diagnosed with lymphoma.
I will never be able to forget the look of one of the paediatricians. I still have nightmares about that moment, although I do not remember much about what was said there.
At first, the consultant said that they thought it was Burkitt, but they were still waiting for some results for the final diagnosis.
Three days later they were sure it was T-lymphoblastic lymphoma/leukaemia and the next day she had a lumbar puncture and the first dose of intrathecal chemotherapy. And the next day she started IV chemotherapy.
On the third day of chemo, she was getting ready to go in for her central line surgery. Then two oncologists came to me and said they were going to suspend the chemo and cancel the central line because the cells on the slides did not show any cancer cells left. They had already considered the possibility that they had changed the samples, but that was not the case. So since they had no explanation for the "disappearance" of cancer, they did more scans and a biopsy of the pleura, as everything started with pneumonia and pleural effusion. Meanwhile, the chemotherapy was suspended. It was a tense moment. On the one hand, the joy of the possibility that it was not cancer, but on the other, the uncertainty of not knowing what it was, knowing that it was serious enough to be mistaken for cancer. She had ct scans, MRI, ultrasounds, blood tests, bone marrow aspiration, x-ray, heart scans, and all of these procedures that you all should know.
During these weeks, she recovered from her pleura drain surgery, and almost 2 buckets of fluid were drained. When she finally got the drain out a week later she had to have a pleura biopsy and had to put a drain in again.
After five weeks, one morning, the consultant came to the room and told us that she got the partial results of the biopsy which did not show any cancer evidence. We still had to wait for the final results, but meanwhile, she would discharge Julia to wait for the results at home as she was good enough at the moment with just a small pleural effusion. What a moment! All the nurses, clinical assistants and housekeepers came to the room, full of joy with the possibility that it was not cancer.
The consultant even took a medical student to the room and asked him to talk to Julia and listen to her whole story, because she said cases like this did not happen all the time.
We were home for a week and they called us to go to the hospital (BCH) for a follow-up appointment. As I thought it was just a follow-up, my husband did not go with us. We waited an hour when the consultant came with a registrar, he said good morning and asked: Where's dad? I knew it was serious. We entered the room and the nurse specialist came, so I knew it was really serious. The consultant asked me to video call my husband and we started the meeting.
After so many exams, mystery, being told twice is cancer, being told twice may not be cancer, it was cancer after all. Lymphoma, as they said on the first day. ALCL, which according to the consultant is a complicated cancer, hence all this confusion in the diagnosis, but now they were sure. Of course, I asked if this certainty was really absolute.
Like the first time, Julia asked if she will lose her hair and again the consultant said yes. Again it was incredibly hard, to imagine what was going on in her head. She should be 'worried' about GCSE, planning gigs, part times, holidays, etc, and instead, she was inpatient for life-saving treatment for almost 100 days in 2022.
All her treatment was as inpatient. She had two central lines, because a week after the first one, they found out that the neck hole was left open without stitches, and because of the infection risk, they had to remove it and put a new one on the other side.
Acord the doctors, she reacted 'well' to the chemo, but even the 'well' in oncology, it is not easy. She had the whole package that, we oncology parents know so well. Mucositis, loss of weight, hair loss, weakness, several scars, fevers, headaches, uncountable pokes, rash, allergic reactions, puffy face, neutropenia, transfusions, etc. She also had, after the second chemo, an extra surgery in Oxford to have one of her ovaries removed and cryopreserved, as this chemo is likely to affect her fertility.
It was incredibly hard in many ways, but she faces everything with grace and determination and she made it! She did great! After 4 chemos the scan results showed no evidence of disease. Yet, she had a few cycles more to finish the protocol and then the end-of-treatment scans. On the 5th of January, the first follow-up appointment, when she heard the good news of remission. 16th her 16th B-Day and then on the 26th she rang the bell. At the end of March, she will have the next scans and appointment.
Sometimes horrible things happen in our lives. There is no reason for that, it is not fate, punishment, merit, whatever. It's just life. And we, oncology parents, know very well this is not about justice.
Is hard to see all the people, friends, etc, who saw how we changed after that and do not understand, walk away and just ignore us; indeed, you can not understand. Feel blessed and privileged for that. I hope you never go through that.
Seeing every day, for months; those young people and children, the toddlers who are there playing with huge smiles while we parents are imploding inside, is beyond exhaustive and painful.
Those brave young people and children have no idea how they are all so very much inspiring.
How profound, touching and moving is the impact they made on so many people!!
Not a day goes by that I do not think of all the families I have met in oncology. I remember you EVERY day.
This had/has a profound impact on my life. To all my fellow parents, my immense admiration and solidarity.
During Julia's treatment between hospital stays and community nurses' visits, it was impossible to get anywhere for a break. Now we are trying to be back to a 'normal' life again.
Despite all the pain we have been through, I am extremely grateful that things have worked out for Julia so far. But if there is one thing I have learned, it is not to take anything for granted. Life changes in the blink of an eye.
One of the few good things about this journey was getting to know so many wonderful charities.
Thank you very much indeed Ben's family for this gift, the foundation does a beautiful job.
🎗️ YNWA 🎗️"