Our Pal - Isabella H

Isabella was a happy and healthy 7 year old girl.

In early March this year she came back home complaining of back pain. I gave her some paracetamol, as the teacher said that she did not fall down or hurt herself. The pain remained for a few days without getting worst or better, then one day when it was snowing in the middle of March, Isabella was unable to walk, the pain in her legs was excruciating. She could not stop screaming. I went to the GP and they agreed to book a visit for an Orthopaedic consultant. Time passed by and Isabella felt worse and worse. She was in such pain that one day she vomited from the pain and at that point I got fed up waiting for a referral and I took her to A&E. Twelve hours later Isabella was diagnosed with ALL (Leukaemia). Two days later she started the standard protocol. After eleven days she was allowed to go home for a few days but after two days she was admitted again and her protocol was changed, as from the cytogenetics it was discovered that she had a sub type of Leukaemia called IAMP21 which was more aggressive and needed stronger treatment. She was therefore moved to Protocol C. Being on the highest protocol our options were reduced, and if the chemo was not working she would have to undergo a bone marrow transplant. However, at the end of Phase 2 in August we were informed that Isabella was reacting and we could carry on with the standard protocol. Isabella is now mainly at home and doing Phase 3 (Capizzi Interim Maintenance). She went back a few half days to school, but she is generally very tired. She lost all her hair and she is very upset about that and she is looking forward to being “herself” again. However, she can now move and she has not been using a wheelchair since July.

Update 20th August 2020

Isabella will be finishing her treatment the 4th of September so she is ready to move on. She is still experiencing some problems in particular due to the amount of weight that she gained during treatment and her bones being weaker than what they should be. We still have a long path ahead of us but hopefully things will continue improving.
Thank you all for the amazing letters, cards and presents, they helped Isabella and Sophie a lot these years especially at the beginning of our journey where the girls struggled to accept the changes in our lives and recently during the long months we could not leave home due to Covid-19. Every times the post arrived there was so much excitement. 
What you do is just amazing xxx

Update 23rd April 2020

Isabella is now less than 5 months away to end of treatment. She is doing ok, and before the Covid-19 crisis she was going to school 3 weeks every month. This is caused by her struggling with her monthly steroids dose. Isabella’s bones have been badly affected by leukaemia first and by the steroids after. 

During her monthly dose of steroids Isabella is unable to walk and she is in terrible pain for around a week. This has been made worst by the fact that Isabella gained a lot of weight in the last year (almost 20 Kg). 

We tried an infusion to strengthen her bones, however the infusion made Isabella badly neutropenic for over 3 weeks forcing us to interrupt her treatment for leukaemia. In order to avoid this in the future, we have now interrupted the infusions and we will restart it once Isabella’s treatment is finished. 

Thank you very much for all the cards/letters/presents that Isabella and Sophie are receiving. This really help during our 12 weeks quarantine.

Update 18th September 2019

Isabella has been okay lately. She finished a very hard, phase 4, part of her treatment Delayed Intensification in January 2019 and she started Maintenance, phase 5, a few weeks later when her numbers recovered. If all goes well, maintenance will last until 04/09/2020. 

After a few weeks of maintenance Isabella was able to return to school part time, slowly building up. In early September she was back full time, however after a few full days, she was admitted to the hospital due to an infection. 

In May, Isabella managed to have her central line removed. This was very important for her, as she developed an allergy to all types of dressing and she was in terrible pain. It was very hard for her because she needed to prove to the medical team, that she will cope with weekly finger pricks and canulas inserted when she needs antibiotics or her monthly chemo dose. So far she has been amazing, coping well with all bloods and canulas. 

She is still not able to start everything that she was able to do before, for instance she cannot go back to cubs, as her immune system is still too low for all the activities involved, but she is going back to some normality. We even managed to go away for a few days on holiday to Scotland and despite Isabella spending most of her time in a wheelchair, as she still struggles walking long distances, she really enjoyed her first holiday since diagnosis last year. 

I would like  to say a big thank you to all people that have sent cards and presents to Isabella and Sophie. Every card represents a smile and I am really grateful for this.