A Letter to my Son
Dear Hugo When we were at the hospital in those dark and difficult days after your diagnosis, the doctors talked to us about the barrage of drugs you would need to take. They tried to prepare us for what was…
Grandad on Duty
Yesterday saw us heading up to GOSH for another dose of methotrexate administered by lumber puncture. This was our fourth trip since being discharged and we have been starting to feel like pros with our routine. We know what time…
Consolidation
We are now 4 days into the second phase of Hugo’s treatment, consolidation, a short phase at only 3 weeks. As Hugo was unable to start the new chemotherapy drug, due to his low blood counts, his drug quota for…
Flying High
So another big day has arrived. We were heading up to GOSH where they would give us the results of Hugo’s MRD test. The result that would tell us if he’d achieved remission. Whether he would be classed as low…
Trust in Us
Since this journey began, many people have told me how well I’m doing, how well I’m coping. I know they mean well and I view it as a compliment that people think I’m doing well. It gives me comfort that…
Baby Steps
Summer is well and truly upon us, even if in true British style, the weather is less than sunny. We were supposed to be on holiday this week. We’d been due to stay in a converted barn on a farm…
The Guilt and the Fog
Today I went for a haircut. It’s my brother’s wedding in 3 weeks and I’m very much hoping to make it. I wanted to hide the grey, of which I’m sure there is more of since this journey began. I…
A Week in the Life
This past week has seen us back at GOSH, this time Hugo was an outpatient on Safari ward. He was in for another bone marrow aspirate and some vincristine administered through wiggly. Hugo was on the morning theatre list which…
The New Normal
We are slowly setting into life back at home, our new normal. Things feel incredibly different and the 15 days we were away for don’t seem a fair reflection of the journey we have been on. It’s strange being out…
Home Sweet Home
Our stay at GOSH has lasted 2 weeks, but finally, 15 days post diagnosis and 11 days into treatment, we are allowed home. We prepare to leave armed with a large bag of medication, with numerous leaflets and booklets. We…