Isabel was diagnosed with Infantile Acute Lymphoblastic Leukaemia at 22 days old. We originally took Isabel to the doctor as she had an enlarged stomach. We now know this was an enlarged liver due to the Leukaemia, but it was incorrectly diagnosed as constipation.
A few days later Isabel started showing random bruises over her body, they weren’t the type of bruises that you get when you hurt yourself, they were grey.
We were fortunate enough that Isabel was seen by an experienced doctor who could tell they were caused by a blood disorder just by looking at them. Due to Isabel’s age we were told to take her straight to Poole hospital.
Following a blood test, we were informed at 1am on August 26th 2014 that our daughter had Leukaemia and she was blue lighted to Southampton Hospital the following morning to begin treatment.
She was immediately fitted with a central line under general anaesthetic and hooked up to fluids. She then began a course of steroids to try and bring her white blood count down. After 8 days we were told that Isabel had a poor response to the steroids and was now being treated as high risk with a prognosis of 20-30% survival rate.
The next day she began her induction chemotherapy which was 24 days of Vincristine, Daunorubicin, Cytaribine & Hydrocortisine. She also had two lumber punctures and two bone marrow aspirations. During her first round of chemotherapy Isabel developed mucosistis (a common side effect of chemotherapy) and was on strong painkillers to manage the pain.
On day 33 she went into remission and was discharged for one week, 5 weeks after she was first admitted, to let her blood counts recover before the next course of chemotherapy.
Within one day of being discharged Isabel we readmitted to Poole Hospital with a high temperature and infection. She began antibiotics and was discharged after two days just in time for her christening but still had to attend Poole Hospital daily for antibiotics until she was re-admitted to Southampton Hospital the following week.
Isabel spent the five out of her first 8 weeks of life in hospital. Her consultant even got her first smile.
For the next stage of chemotherapy Isabel was invited to take part in a trial (Interfant-06). We were invited to take part in this trial because ALL in babies is very different to ALL in children. The treatment given to older children does not work so well in babies. Babies are also more at risk from complications of treatment, than older children, such as infection.
We decided to take part in the trial as Isabel would be given the treatment regardless. The only difference was she would be randomised for the chance to be given a new combination of drugs. We also wanted to help research for babies in the future.
Isabel was chosen at random to receive the standard treatment. Although we have been told that the outcome wouldn’t have been any different had she received the new treatments, we will never know for certain.
And so Isabel began her next block of treatment, a 28 day course of chemotherapy made up of 6 different drugs as well as two lumber punctures. She also had to take anti-fungal medication and antibiotics to prevent infection.
During this time a bone marrow donor was found in Germany as well as a cord donor in the USA. We were told from the start that Isabel would need a bone marrow transplant due to the aggressive nature of her cancer. We were fortunate to find one as Isabel also had a rare tissue type.
In October 2014 we met with a consultant at Bristol Hospital and were invited to enter Isabel into a new trial (CD19-CAR Immunotherapy for Childhood ALL)
This trial was only available to up to 30 children / young adults in 9 hospitals across Europe. We were recommended for this trial as Isabel was at high risk of relapsing even after transplant. It would mean Isabel would be eligible for a new treatment called gene therapy should she relapse after transplant. Furthermore, this trial would only be available if Isabel received cells for her transplant from an adult donor and not a cord.
Isabel’s consultant in Bristol described her as ‘one of the highest risk children undergoing stem cell transplantation for Leukaemia’.
We went back to Bristol in November where it was confirmed that Isabel had one donor match (9/10) and we signed the consent forms for her to participate in the trial. She was due to be admitted to Bristol hospital for a bone marrow transplant in January 2015 and had a new double central line fitted in preparation for this.
Unfortunately, Isabel relapsed before finishing the courses of chemotherapy. At this point the protocol was abandoned and Isabel was given a course of chemotherapy designed for relapsed ALL in older children.
There were no other options available.
This also failed to work and her cancer progressed.
We went back home for a few days and Isabel developed a near fatal line infection. Within the hour of the community nurse coming round, taking bloods and flushing her central line, Isabel’s temperature rocketed and she was crying. We rushed her to hospital where she began antibiotics. However, every time her line was used her temperature would soar and she would have a fit, called a rigor, until the paracetamol kicked in. The Doctors decided to stop using her central line and remove it. That meant that all IVs had to go in through a canular. They were hard to fit and Isabel’s veins didn’t last long before they could no longer tolerate the canular.
After Isabel had recovered from her infection we were given one final option, to take part in a trial at Sheffield hospital (Paediatric Study with Blinatumomab in Acute Lymphoblastic Leukaemia). Isabel had a new central line fitted in preparation.
Blinatumomab is experimental in children and adolescents with relapsed ALL and is not approved by any regulatory health agency. Despite the long list of possible side effects, people had even died from this treatment, we had no choice but to sign the consent forms as it was the only chance we had left of saving Isabel’s life.
The study involved Isabel being infused via a mini pump that we had to carry with her 24 hours a day in a back pack. For the first few days she was an inpatient at Sheffield Children’s Hospital. This was to monitor any side effects.
The only side effect Isabel experienced was a problem with the clotting in her blood. However, this was a positive as side effects meant there as a chance the treatment was working. Her white count began to drop as well to the point there was no blasts visible in her blood films.
Isabel’s consultant was feeling positive the treatment was working and we were given hope. After a few days in the hospital Isabel was discharged to a local hotel and we were able to continue the trial as an outpatient.
Our hope was short lived as a bone marrow aspiration revealed that Isabel’s bone marrow was still 90% full of blasts. Despite this the consultant was still not sure whether the treatment had slightly worked or not so we decided to continue the trial for a couple more weeks and see if there was any change.
There wasn’t and we were given the devastating news that Isabel’s cancer was still progressing and there was not really any explanation for her white count initially dropping. Her consultant said that he had never come across a bone marrow like Isabel’s.
We left Sheffield and brought Isabel home to begin palliative care at home. We were determined we wanted her to be at home as much as possible for her final days.
We were already trained to administer her feeds via her NG tube as well as all of her meds and oral chemotherapy.
We knew we had to check her temperature regularly and how to spot infection quickly.
Julia’s House kindly offered to help and give us respite but we wanted to care for her ourselves. At this point she was so traumatised after everything she had been through she wouldn’t have allowed anyone else to care for her anyway, she couldn’t even sleep unless one of us was lying right next to her. She only wanted to be with her mum or dad at all times.
We couldn’t give up that easily. We searched the internet for trials in other parts of the world. We found one in a hospital in New York. We knew this trial would be coming to the UK at the end of the year but we also knew we didn’t have that much time. We contacted the hospital and they agreed that Isabel could go there to take part in the trial. However, Isabel’s consultant at Southampton said that she was too small and the trial involved taking a lot of the patient’s blood, she wouldn’t be eligible.
At this point we just concentrated on making as many memories as possible and try to make every day a happy one for her. Isabel had a big party for her first birthday with all of our family and friends.
A week later we knew it was time to take her to Gully’s Place in Poole Hospital for her final days. She was on a lot of morphine and asleep all the time, her white count was high and she didn’t have much time left. She was covered in bruises from her low platelet count and we were bringing back blood from her stomach every time we tested her NG tube.
Gully’s Place is a live-in area on the children’s ward of Poole Hospital. It meant we could still care for Isabel ourselves but have nurses and doctors immediately on hand if we needed them.
Isabel passed away on August 12th 2015 aged 1 year and 8 days old.
There is no known cause and very little hope of a cure for the type of cancer Isabel had. This is why we will never stop trying to raise awareness and hopefully improve other children's chances in the future.
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