It really it wonderful. She's taking it to school to show her class tomorrow before taking it to LGI for her chemo. It is an amazing thing you all do, the quilt squares must take ages to stitch, everyone giving up their time to create the quilts to put smiles on the kids faces and give them something to cherish. Please thank everyone, Savannah absolutely loves it. X
Savannah is the 3rd child of 4 siblings and she is definitely the child who has smiles in abundance, who throughout her 5 year cancer battle has been affectionately known as Smiley Savannah.
Up until 3 months before her 3rd birthday she was a healthy, happy, sociable girl who loved spending time with her family and friends at nursery. Even 2 days before we received her devastating diagnosis she had spent the full day at nursery. Looking back the only signs that she was a little 'off colour' were her reluctance to eat her lunch, not wanting to play and a few bruises that could be explained as bumps that any active 2 year old would get playing.
It was mother's day 2016 when Savannah became accutely unwell, struggling to stay awake, not wanting to eat and with a distended stomach that I took her to A&E. When we arrived she had developed an alarming looking rash which I was terrified was meningitis. The medical staff were amazing and within a few hours of arriving at A&E we were admitted to the children's ward and she was hooked up to antibiotics and had numerous vials of blood taken.
It was less than 6 hours after first arriving at the hospital that I was given the news that my child didn't have meningitis but she did have cancer. They needed to do more tests but they believed it was Leukaemia. We were transferred by ambulance to Leeds and at 1am we arrived on the childrens Haematology and Oncology ward at Leeds General Infirmary which has become like a 2nd home.
Savannah was diagnosed with Acute Lymphoblastic Leukaemia and began the gruelling 2.5 year course of chemotherapy which involved over 110 nights as an in patient, 27 blood and platelet transfusions, 16 lumbar punctures, surgery to insert a port-a-cath, bone marrow aspirations, daily chemotherapy which made her neutropenic and prone to infections. She had 2 bouts of pneumonia, shingles, hand foot and mouth as well as horrendous mouth ulcers, total hair loss, frequent vomiting and diarrhoea and weight loss. Despite all that she faced, she always had a smile and a laugh for everyone and the doctors were really happy with how she had handled the treatment. She took her last dose of chemotherapy 1 week before her 5th birthday and we had a massive party to celebrate. The doctors were confident that the treatment had worked and although she had some side effects such as scarring on her lungs, knee and ankle pains and due to the amount of school she'd missed was a bit behind her peers academically, she was officially in remission. She would have regular check ups and need treatment for some of the side effects but we were excited that it was all over.
She did amazingly well and caught up academically, learnt to swim and ride a bike and had the most amazing awareness of the feelings of others, far beyond her age. We were all getting on with life and even when we went into lockdown because of Covid, after everything she and the whole family had been through previously, it didn't bother us to stay at home, although Savannah really missed school and her friends. The main thing was we were safe and we were all together.
It was like a nightmare unfolding when in October 2020 I started to notice that Savannah was more tired than usual, off her food and had started to get bruising in odd places, which couldn't be explained as we hadn't really been anywhere. She had got a noticeable swollen tummy and was pale and despite not wanting to even think about it, I just knew she had relapsed. Because of Covid, check ups had stopped and so we hadn't been to clinic for over 6 months but she was 2.5 years off treatment so that shouldn't have been a concern. I phoned the ward at Leeds General Infirmary and told them how Savannah was and was told they wanted to see her so I drove to Leeds, still not wanting to believe that the fear of relapse was happening. Within 30 minutes of arriving on the ward and surrounded by familiar nurses, it was confirmed that Savannah had relapsed and the Leukaemia had returned.
The next few weeks we had to stay in hospital whilst they did tests to see if it was same type of cancer or a new one and also come up with a treatment plan. Hospital during Covid is awful, no playroom, no visitors including dad or siblings, no mixing with other children. It is awful both staying on the ward or visiting clinic almost weekly. But the worst bit was Savannah being 7 and so was more aware of what was happening and all the memories of the past treatment and illness came back. She was really scared and wanted to know why she had to go through it all again. But in true Savannah style she had a cry and then just accepted it and got on with it. This time she has received immunotherapy as well as intense chemotherapy and most of the parts of the first time but on top of all that we've had to deal with the fears of Covid and her going to school.
Once again the doctors are really happy with how she is responding to treatment but it has been gruelling and she has been so sick and it's so upsetting having to watch her battle this disease again. All her siblings have been tested for bone marrow compatibility and thankfully 2 are a 100% match so are on standby if needed.
She is once again showing us how strong, determined and positive she is and there are times when she'll have intravenous chemo in the morning and then go to school in an afternoon. She is always saying it's just something she has to do to get better and there are lots of other children who are more sick than her. She is a wonderful girl who leaves a lasting impression on everyone she meets and who is loved so very much by her mum, dad, older sister and older and younger brothers and we know she will beat this cancer again and be a force to be reckoned with as an adult.