Kevin Hill
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Cycling to Paris for Naomi

Kevin Hill
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01 May 2015

3rd December 1993 and my daughter Naomi was born in City Hospital Birmingham. I now had a wife and three daughters, even the cat was female, my life was going to be hell. I was like a dog with two tails. While her sisters were still learning to wrap me round their finger, Num raised the bar to a new level from the start.

So how did it come to this 41 months later, and two days short of my fortieth birthday, Anthea and I held her in our arms as she passed away.

Naomi was a very special girl. She brought out the best in people and made people do things they might not ordinarily do, she wasted no time on tantrums though she could be obstreperous when required. Given what came later she was not a sickly child but robust and enjoyed joining in everything she could and dragged her sisters in to all her games.

We both believed our hearing had been affected as this Doctor had said Naomi had leukaemia, cancer. Even now so far removed from that day, and with everything that followed, I can remember that numb feeling. Pinch yourself, you’ll wake up and the nightmare will be over. We looked at each other and then Num. This cannot be right. We looked at Dr. Derbyshire and he confirmed what he had said. He wanted Num in straight away but suggested we take her home and get some stuff together, make what arrangements we needed to and return to ward 10 in the afternoon.

For the first time we hear the words “blood count”, words that are now to rule our lives. They determine Num’s state of health and her ability to fight, or risk of infection. This is our first lesson in haematology, and whilst it is now a jumble of meaningless figures we soon become able to interpret them as well as the doctors. Dr D runs through a lot of information which really goes over our heads but the nursing staff are well aware of this and after he has gone sit us down and go through t with us again, though not for the first time.

Life almost fell into a routine. Medication by the clock, clinic by the calendar. We were constantly looking at Num for changes – temperature was the first warning. With almost indecent haste it now seems that became routine also. It’s amazing what you can adapt to and how quickly when you have to.

You watch documentaries and dramas on television with people in this situation and try to imagine how you would cope. You cope, you survive. Life changes dramatically but you cope. What were minor inconveniences become major obstacles. Before going out you have to consider whether you have time before medication will be needed, can you take it with you? Whereas previously we would be happy for Num to come in contact with chicken pox to get it over with, now it is something to fear. If her immunity is compromised by low blood count it could be fatal in extreme circumstances.

We’re given the regimen for Num’s treatment over the next six months based on everything proceeding normally. It shows us when we can expect to be in hospital and when she will be doing what in terms of drugs anyway. Treatment is going reasonably well and so we moot the possibility of taking Num away.

Sods law, after being really well in preparation for the holiday, Num isn’t very well. Her stomach is swollen and taut, so we go back to the GP who refers us to a local hospital. Doctor D feels sure that she has Ataxia Telangectasia – a chromosome disorder which will keep creating leukaemias -  and he proposes a bone marrow transplant, though the chances of success are slim (1-4), because if he’s right, the issue is her chromosomes not the bone marrow. The transplant may or may not work but he doesn’t want us to get our hopes up.

Naomi, now on powerful steroids looking even more like the Michelin man, takes it all in her stride, stoically taking the prodding, poking and drugs as and when required. Once again we are left outside a theatre as our baby goes off for another procedure.

We break the news about the transplant to the close family, who’ll be typed for a match. Rachel does not want to do it. We have to explain that she and Jessica are most likely to match. Eventually she agrees, reluctantly, and has to have three lots of “magic” cream before the needle. Firsst good news in ages – Rachel is an almost perfect match for the BMT.

Everything is looking good after the transplant, counts are reasonable. Now it’s time to play the waiting game and see what develops

Everything is still going smoothly. Num is still being sick occasionally, and had a few bad days with her mouth but that is now very improved. She still will not eat but is drinking small amounts. She was discharged after 5 weeks in isolation, and the graft-versus-host disease didn’t get very severe. Our only obvious problem is Num will not eat anything. Hopefully being at home will encourage her

Anthea’s fortieth birthday, not many celebrations this year as our minds have been elsewhere. Num had not been well over the weekend and yesterday was very niggly so Anthea has taken her up to clinic for a check up. Anyway about 10.30 I got a call I will always remember Amf only had to say two words “its back” and a black hole opened up. We were met by the doctor and a nurse. He had gone over the blood tests again in the meantime and these confirmed it was back. Being so close to the transplant there was little they could do other than palliative care.

I have to do the hardest thing I hope I will ever face in my life. I have to tell Jessica & Rachel that there is nothing more that can be done for Num – she is going to die! How do I start? Where do I start? These are thoughts which race through my mind even now with so much time passed, so many emotions felt and an ocean of tears cried.

We were back in the transplant room as this had been free when we came back, so the scene of so much hope those few weeks ago was to be the scene of our family despair. Mom and Dad brought the girls in and whilst they were under strict orders not to say anything the girls must have picked up on the emotions. The girls came into the room and I sat them on the bed on either side of me with Num playing with Anthea behind as ever unaware of the enormity of what was happening. I can’t remember what I said or what they said my only memory is that I don’t know how the Doctors and Nurses cope with having to give this type of information as part and parcel of their jobs on a regular basis particularly in Oncology. It almost broke my heart and I hope I never have to do anything like that again. The memory of that day will live with me forever.

Naomi loved life and people loved her. In all the time she was with us she rarely complained, and if she did it was usually about being uncomfortable. Even when bloated with steroids and movement was difficult, the twinkle in the corner of her eye showed she was looking for some mischief. Medication time was difficult for many parents. Having to get children to take various different drugs in a regimented fashion was never easy and many we would see struggling to get one cycle completed almost as it was time to start again. With Num however it was so easy. It took me longer to get them ready. She would sit there take them all one after the other because I believe she knew fighting it didn’t get her anywhere and if she took them she could get off and do other stuff.

She loved her hospital and never had to be cajoled or persuaded to go. They loved her and they “cared” for the whole family, Jane particularly took Jessica our eldest under her wing from an early stage and helped her through. They also never gave up and were to the end willing to try anything for us so long as we wanted. In today’s “survival” statistics driven culture they stood out like shining beacons. When she was diagnosed we were told survival rates had crossed the 50% threshold, unfortunately we were on the wrong side of the curve, but they continued to look for any edge to improve that and with Naomi having a relatively rare condition it allowed them to study and learn from this.

At Naomi’s funeral I played “Who Wants To Live Forever” by Queen. A strange choice perhaps but one line says, “we only have one sweet moment set aside for us”. Naomi’s moment lasted beyond the 41 months she lived; it shaped our family and many of the people she came into contact with. She continues to inhabit every day we live; her sweet moment will live forever.

So this is why I’m supporting children’s cancer charities and in particular Leukaemia & Lymphoma Research because they are always looking to move that survival rate up 0.1% at a time. For the last eighteen years I’ve been cycling to beat blood cancer and whilst I’ll never be a major fundraiser, every penny counts and anything I can do so that one day another parent doesn’t have to sit their children down to have that conversation is worth every turn of the pedal.

Naomi would be 21 now and she faced her big challenges head on, it’s time I took one on. See you all in Paris.