Grace's adventure begins

Having been a healthy child, Grace at age 8, suddenly kept getting bruising that was unexplained. The bruises were huge in places. We decided to have her looked at, but I was afraid that people would think we had been hurting her! We took Grace to ‘Shrop-doc’ who filled out a body map of the bruises - it was frightening. We were then admitted to the children’s ward in our local hospital, they were lovely, but we had no clothes, nothing - we weren’t expecting it. Her bloods were repeated, and an appointment was made to see our local consultant. The results suggested Immune Thrombocytopenic Purpura (ITP) a condition which causes the number of platelets in the blood to be reduced.

Appointments continued and then the nosebleeds started that wouldn’t stop! Once she had her nose cauterised. She would end up being sick and her dad driving her to hospital with open access to the assessment unit. It was awful to watch her. She started to need regular platelets and her liver started to struggle.

The care we received was great and eventually she had a bone marrow sample taken. I cried as she went to sleep.

The diagnosis

Her results seemed to take forever, over 24 hours, we were so scared I cried myself to sleep that night in hospital with her. A central line was put in and we stayed at Birmingham Children’s Hospital. The results were suggesting aplastic anaemia, it was hoped that her bone marrow would recover, but this never happened. Life became platelets 3 x a week and blood transfusions. I had to be signed off work to look after her and she was taught on her hospital visits. As her results didn’t change it became apparent, she had severe aplastic anaemia.

The diagnosis led to testing her sibling to see if she was a match for a bone marrow transplant. Thanks be to God her sister was a match! Life became regular trips to Birmingham Children’s Hospital having talks about having a bone marrow transplant.

We set up a blog  

As the date drew near in November 2017, we tried to do lots of safe things, not going anywhere busy, staying away from crowds. We met new friends, friends whose children sadly had cancer but no one with Grace’s diagnosis.

The bone marrow transplant 

November the 7th2017 arrived and we were in Birmingham Children’s Hospital for the transplant. Thankfully we also had a room at Ronald McDonald House, this proved a life line. Chemotherapy started, and Grace became poorly and lost her hair.

She had an NG feeding tube and we were in fully protective isolation. Life was all about protecting Grace, washing hands, wiping and covering things. My life was about finding things to occupy us, walking into Birmingham and going on shopping missions for Grace. She was allowed few visitors and so a surprise visit from our local consultant really meant the world to us both. We would Facetime, text, WhatsApp and Snapchat people. I actually met someone, Mandy, whose daughter had aplastic anaemia and we would chat. Another friend, who has now sadly lost her daughter to a brain tumour was down the corridor and a message away.

We waited for her bloods to come up, they did but she needed a booster to keep them up. We decided we needed the help of Clic Sargent which was great. Finally, in December Grace could go for a walk outside but nowhere busy. The care was continually great.

We're back home!

On 23rdDecember 2017 we came home, life was about medicines, adjusting to family life and weekly visits to Birmingham. Eventually these became fortnightly and now are monthly. In April this year Grace returned to school and having lost my job, I was able to return to work. We moved Grace’s school as we had struggled to get her the tutoring she needed at home.

Grace had her central line out in August as it split! On 14thNovember 2018 it will be a year since Grace’s transplant. Unfortunately, she has started to lose her hair again and is now wearing her Optima wig again. She takes less meds and will soon drop to a lifetime of Penicillin.

As a family we have been on a journey that means we see things very differently and have different priorities in life. We have had the loving support of friends, family and our church.