Kate is doing fine on her radiation. The worst part is getting two boys off to school and struggling through the traffic into Bristol every day for 10 a.m. Weather here is disgusting—wet, windy and cold.
March 24, 2009
Kate’s last radiation will be Wednesday of next week. She has kept fairly well—just a bit tired and achey. She has another session of Avastin Thursday of next week. Her hair is showing signs of regrowing, although her eyebrows have now disappeared.
The date of that entry caught my eye. Both my birthday and Kate’s birthday had been and gone the week before, and were completely overshadowed by Kate’s treatment. I remembered vowing to make our thirteenth wedding anniversary, on March 31, as special as possible.
On the way home from work, I went shopping and bought Kate a lovely card and a beautiful big bunch of flowers containing some of her favorites; ivory roses and gypsophila. I also picked up a huge box of chocolates, a bottle of champagne and the ingredients to make her favorite steak dinner with pepper sauce, using an old family recipe of mine she absolutely adored.
When I pulled up at the house I decided to back into the drive and ask her to come out and help me get the shopping in, so she would see all the goodies at once and enjoy the surprise.
“I’m home,” I called, turning my key in the lock. “Come and help me, Kate,” I shouted. “I’ve got some shopping to carry in.”
I stuck my head around the living room door to see Kate lying on the sofa looking tired and nursing a bandaged arm. I could see her dad in the adjoining kitchen, washing up at the sink. Kate didn’t move.
“Come on, Kate, give me a hand,” I said chirpily.
“Are you stupid?” she hissed, still refusing to move and looking anxiously toward her dad. “Are you looking for a row?”
“Of course not! I just want you to help me with the shopping. Please, Kate, give me a hand?”
I pulled her gently up off the sofa as she continued to protest, and I could feel Martin, always the protective dad, giving me a disapproving glare as I ushered Kate outside. I threw open the trunk of the car as quickly as possible and watched Kate’s face light up.
“Singe!” she shrieked, throwing her good arm up and covering her gaping mouth with her hand. “You bastard! Look at all this! It’s amazing!”
I gave her the card, which she opened immediately.
“I love you acres and acres too,” she beamed. “I’m sorry . . . I didn’t even remember it was our anniversary . . . and I’m sorry about . . .”
I kissed her to shut her up and stop her apologizing anymore and I smiled when I realized she had lifted one foot off the ground when I kissed her, which was one of her little habits. She was still my same old Kate, cancer or not.
“You don’t have to say sorry,” I said.
May 12, 2009
Kate is still OK and has had 8 of the 15 three-weekly doses of Avastin. One of the children’s charities, Make a Wish, has offered them a Florida Disney World trip for November time when her treatment is finished.
Reef’s recent X-ray check has indicated that the growth plate on his affected leg is showing signs of recovery which will mean his disability may be less than originally thought, and major surgery in his teens may be avoided.
June 28, 2009
There is an article about Kate in the Sunday People today, under the headline: “My Son Reef had chemo . . . Then he pulled ME through it.” Here are some of the things Kate told the newspaper:
Although I had sympathy and support from everyone, Reef became my rock because he had been through it all before. He knew when I was aching and he would hold my hand and say, “It’s OK, Mummy, I’ll look after you.” He was caring beyond his years.
He’s been in a medical environment so much that it rubbed off on him. He knows that when someone is unwell you need to hold their hand and look after them and that’s what he did for me.
The worst part of it was feeling firsthand what Reef had been put through. After the CT scan I cried and cried. It was horrible, it was uncomfortable and gave me hot flushes.
But I didn’t cry because of how it made me feel, I cried because we’d put Reef through that and he’d gone through it with a smile on his face. I knew because he had been through it and been brave [that] I had to do it and be there at the end for him, and for Finn. Both boys have been brilliant.
Reading this, I had a vivid image of four-year-old Reef playing on the floor with his toy Bakugans. His head was down and he was totally engrossed in the little magnetic warriors that sprang into life when they hit anything metal. I watched as he flicked a glance up to Kate on the sofa and suddenly left his toys exactly as they were and walked over to her. “I love you, Mummy,” he said and climbed up on the sofa for a snuggle. Minutes later he got down again, trundled back across the carpet and picked up his game where he had left off, leaving Kate with a wistful but contented look on her face.
“Reef seems to have a sixth sense,” Kate said to me. “It tears me apart to think about him having gone through this treatment. It’s bad enough for an adult, but for a tiny little boy it must have been so frightening. I can’t bear to think about him worrying about me now, knowing what I’m going through.”
I cuddled her and told her not to let herself go too far down that road.
“I think he was so little he was oblivious to some of what was going on,” I said. “That has to be a blessing.”
“I hope you’re right,” Kate said. “I really do.”
I desperately hoped I was right too. I remembered Reef screaming in the night in pain. I remembered the black rings around his eyes, the red holes in his skin from needles and drips, how I’d have to untie him in the night when he tossed and turned and wrapped himself up in all his tubes in his hospital bed. I would never forget having to pinch him, just as Kate did so many times too, when we needed to make him cry so he would inhale the anesthetic and fall unconscious for his scans. That has to be one of the most horrific tasks a parent can be asked to perform. I remembered each of the sixty times Reef was given a general anesthetic, and each and every one of the thirty rounds of radiation and forty rounds of chemotherapy he endured. The numbers sound mind-boggling now, but at the time we just got on with it, signing off more and more treatment in the hope it would save Reef’s life.
I cried like a child myself when he suffered side effects, and so did Kate. Reef lost his soft baby hair, his mouth was riddled with ulcers, he had dreadful diarrhea and he had to be fed though tubes. At one point he had eight different tubes going into his frail body, including a nasal gastric tube injecting milk though his nose to his stomach. He was so ill he was in bed 24/7 and had observations every single hour, with doctors and nurses prodding and examining him as the equipment that was keeping him alive pumped and beeped alarmingly all around him.
When he had chemo, Reef’s diapers were radioactive. We were warned to wear disposable rubber gloves to change him, as the drugs had made his urine so toxic it could burn our skin. Kate had to be extra careful, as she often alternated between changing Reef and expressing breast milk into bottles for Finn, which would then be driven across town to feed him.
It was beyond horrendous. Other parents of toddlers were obsessing about organic food or worrying about whether to give in to the odd chip or scoop of ice cream, in case their child overdosed on salt or sugar. Here we were blasting Reef with as many toxic chemicals as he could physically endure. The rest of his little body had to take the rap, because killing the cancer came first, second and third.
* * *
“I can’t wait for my treatment to end,” Kate said, just as she had wished for Reef’s to end, month after month, year after year. “I just want us to be a normal family again. It’s not that much to ask, is it?”
“No,” I said. “It really isn’t. You just have to keep going as you are. You’re flying through the tre
atment, you really are. It won’t be like this forever. Remember how Reef’s treatment seemed to go on forever? It was two years of hell, but we got through it, didn’t we? Look at him now, doing so well. It won’t be long for you now.”
August 9, 2009
We went to a local animal farm with the grandsons for Reef’s fifth birthday and had a good time in spite of the showers.
Kate came with us to a posh family wedding at Sonning at the weekend and everyone was delighted to see Katie looking so bonny now she has some hair.
I went with her for her chemo this week and she admitted she was at the point of asking to miss her last four treatments as she is so full of aches and pains. The consultant says this is probably just an after effect of the radiation and Kate says she now feels able to go through with the remaining three treatments. Roll on October 8.
Reef can now ride his bike without stabilizers—wow—I can only just do that!
September 16, 2009
The doctors are concerned about some of the levels in Katie’s blood and are doing more tests. Her back is extremely painful which may have been due to the radiation or one of the drugs she has taken, or could just be the way she has been holding herself since her operation. She has been seeing Martin’s chiropractor who seems to be helping to bring back movement. We are very proud of the way she keeps cheerful and brave with so many worries.
Reef is back at school and loves it to bits. He was full of beans at his latest hospital check up this week, wanting to know how much he has grown and having his chest X-rays like a good ’un. His MRI scans are now every six months and he is doing well. His leg growth seems to be coming along nicely and he is amazing on his two-wheeler bicycle. He is also having swimming lessons, which he loves. His reading and writing is coming along nicely.
Young Finn is still a hoot—full of energy and chat. They were ready to go back to school and nursery after the summer holidays. Finn managed to sneak into Reef’s queue going into “big school” and Katie had a job extracting him to go to nursery.
October 8, 2009
We cannot believe that on the day of Katie’s last chemo treatment they have found two worrying lymph node swellings in Reef’s groin and he will be having urgent investigations tomorrow.
October 16, 2009
Reef’s consultant is satisfied that his “lumps” were caused by an infection following a recent fall on his bad leg. Kate still has problems with her back, cough and blood results but is soldiering on as usual. She may have a bronchostomy to take lung samples to source her discomfort. The consultant has confirmed her bones and liver are cancer free. Life is a roller coaster!
November 8, 2009
I was at Kate’s when the doorbell rang and a big parcel addressed to Reef from the “Make a Wish Foundation” was delivered. Reef’s eyes nearly popped out when he opened it. It contained all the information about their trip to Disney World on November 20. He didn’t know anything about it beforehand and he just hugged his mum and said: “We can all go and you and Daddy don’t have to find the pennies!”
Everything is paid for—hotels, flight tickets, car hire, entry tickets and they even get spending money. When Singe came home Reef told him: “I’ve got lots of money now—16 quid,” and we all laughed, thinking the holiday was worth rather a lot more than that. Don’t they all deserve it?
I smiled when I read that, thinking of one of the highlights of our trip to America, when we went swimming with the dolphins at Discovery Cove.
“You deserve this so much,” I said to Kate, kissing her.
I can see Finn now, literally nose to nose with a dolphin while Reef, Kate and I huddle in as close as we can around him in the water. Kate has her arms wrapped protectively around Finn as she drinks in the wonderful scene, and we all have big smiles on our faces. We are packed tightly together in our wet suits and life jackets, a family “tight knit,” as Kate would say.
“I’d have flown to America just for that moment,” Kate said afterward. “Wasn’t that amazing?”
“Awesome,” I said. “I will never, ever forget it.”
Kate’s eyes were shining out of her face, which had a healthy, pink color in it for the first time in ages. Her treatment was over, and even though she was still weak, I was convinced the worst was behind us.
“You really do deserve this trip so much, Kate,” I said, giving her another kiss, and another. “Look at you—you are amazing.”
In typical style, Kate was up for milking the most out of every moment of our time in America, and she didn’t let her tiredness or frailty stand in the way. We stayed in the Give Kids the World Village, which was absolutely overwhelming. It’s like a miniature Disney World with Disney characters strolling around and pizza and ice cream on tap 24/7.
Our accommodations looked like a cartoon-style fantasy house a child might draw, painted in bright blue and orange. Kate got very emotional and started to cry when she saw it, and the boys buzzed around like maniacs.
“What are you crying for?” I asked Kate when I noticed the tears starting to well up in her eyes.
“It’s just so incredible,” she said. “We’re just so lucky.”
We both cried in each other’s arms. I was convinced this really was the turning point I’d been longing for. A line had been drawn in the sand with this trip. It marked the end of cancer in our lives, I felt sure.
A six-foot-tall rabbit called Mayor Clayton and his wife, Ms. Merry, welcomed us to the village and asked Kate and I if we would like Mayor Clayton to do a surprise “tuck-in” for the boys later that evening. We agreed, giggling to ourselves, and when the time came for Mayor Clayton to appear, Reef and Finn didn’t suspect a thing. They were both ready for bed in their pajamas, with teeth cleaned and hair combed as usual, when there was a loud knock on the door of our apartment.
“I wonder who that can be,” Kate said, sounding like a children’s TV presenter as she played along enthusiastically.
“I’ll go!” Finn volunteered. Both boys had figured out the fact that only good things happened in this resort, and Reef’s eyes were dancing like sparklers as he watched his brother bolt to the door. Finn threw the door boldly open, only to step back open-mouthed, amazed at the sight of the giant fluffy rabbit on the doorstep, who was waving merrily and wearing a night cap and pajamas.
Finn ran for his life, heading toward Reef who was legging it to the bedroom, and Mayor Clayton gave chase. The boys didn’t know whether to laugh or scream.
“Thanks for coming, Mayor Clayton,” Kate said brightly, enjoying the moment. “Have you come to say good night to the boys? That’s great! How kind! Into bed now, boys!”
I’ve never seen the pair of them scamper into bed so quickly, and I was giggling so much the video camera was shaking as I filmed the scene unfolding. Mayor Clayton tucked the astonished but delighted boys into bed and gave them each their cuddly toy before waving them good night and giving Kate and me a hug each.
“Night-night, Mayor Clayton,” Kate said, giving him a big kiss, which left a large lipstick mark on his plastic nose. We both burst out laughing as we waved Mr. Clayton off, and Reef and Finn hugged their cuddly toys tight as they eventually fell into a contented sleep.
Kate and I were on a real high, and that night we cuddled up tight together in bed. For so long now Kate had been either recovering from surgery or going through treatment, which hadn’t made it easy for us to get close. For the first time in ages it felt almost like the old days, with Kate lying comfortably in my arms. Happiness, not worry, hung in the air as we drifted off to sleep.
Nobody who saw us on that holiday could have guessed what we’d gone through. Over the next week we felt like movie stars as we blasted out all of our favorite music in our huge, hired American car, heading to Animal Kingdom and the Epcot Center. Kate looked stunning in shades and shorts, enjoying the feeling o
f the wind blowing through her newly grown hair as she sang along to ABBA, the Clash and the Undertones. The boys joined in, learning the words to “SOS,” “Should I Stay or Should I Go?” and “Teenage Kicks.”
I remember how full of life Kate looked as she strolled down Main Street, smiling from ear to ear as she lapped up the carnival atmosphere in Disney World. When we stopped to watch a parade I felt choked with emotion. I looked at my family, all happy and excited, and felt totally convinced Kate had beaten cancer and was going to survive, just like Reef.
I took out my video camera to capture the moment and caught little Finn in the viewfinder, pulling urgently on Kate’s arm. He was pointing at the larger-than-life cartoon characters strolling down Main Street, and at first Kate thought he was just excited about the whole parade and didn’t realize why he was getting so animated. A moment later Kate realized Finn had spotted Mr. Incredible traveling on a float, waving in our direction. Finn wanted his mum to see Mr. Incredible, as he knew friends called us “The Incredibles”
That’s when I had that moment all over again, the one I’d had when I lay on the beach with Kate after Reef’s treatment had ended. Back then, the boys looked like they didn’t have a care in the world. Watching them scampering on the shore that day pushed the bad memories of Finn in an incubator and Reef on a cancer ward deep back in time. Then, Kate was as fit and well as ever, or at least we thought she was. We were both flooded with relief and optimism about our future, about sharing so many more happy times with our two lively little boys. Now, it was just me looking at the rest of my incredible family, marveling again at how they’d all survived against the odds, Kate included this time. It was a miracle how we had survived together as a family too, in the face of so much pain and stress.
“Look, Daddy, it’s Mr. Incredible!” Finn shrieked, turning to give me a big grin as he pointed at the character.
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