My husband’s pain is fixed by his grandson’s million-dollar smile

This year will be a big one for the family: in May my husband will be five years clear

Caleb asleep in Enda’s arms.

Caleb asleep in Enda’s arms.

 

Each birthday since May 2014 for my husband is a milestone – a blessing almost. It’s a day of immense celebration regardless of its enumerative value – another year he has been afforded to live.

Last year’s one, his 53rd, came with a birthday present that could not be outdone by any other gift – the arrival of our first grandchild. Caleb decided to arrive into our world on his grandad’s birthday, ahead of schedule. Coincidence or apropos to a man who deserves the best present ever – I think it’s a bit of both. It’s as if all the stars aligned to make this special coincidence happen with incredible everlasting significance.

My husband joked: “Well, I can kiss goodbye to my birthday from now on – someone else is going to steal the show!” And what a show these two lads will have on August 24th for ever more! This sharing of their date of birth has created a special bond between grandad and grandson that is unique to them – my husband may give out about his birthday being “hijacked”, but he is tacitly pleased.

Enda and Caleb, on the day he was born.
Enda and Caleb, on the day he was born.

Being alive and well for the birth of his first grandchild is a wonderful privilege and hugely momentous. Another milestone that could have been missed.

Cancer almost dimmed the light on our world, but our grandson has illuminated it once more. My husband’s future now has this extra little person in it – the happy milestones ahead are plentiful. Plenty of shared birthday cake candles to blow out – shared wishes to make. A future now lies ahead where my husband can watch his grandson grow into a toddler and then a young man. A future where he can hold his chubby little hand and bring him for walks through the forest, regaling tall tales of the day when “I was young boy and walked through these woods, I met a big grizzly bear and wrestled him to the ground ... ” to curious small ears. A future where Caleb can curl up on my husband’s lap while he reads him books of Santa coming down the chimney on Christmas Eve, of Goldilocks and all the old favourites. A future where my husband will be able to show him how to use a power drill – how to hit a golf ball. A future where our grandson has his grandad very much in it and this picture radiates hope and is unequivocally joyful.

The fact that this grandchild has arrived when my husband is in good physical shape with decent energy levels is fortuitous. His hip pain can be instantly assuaged by this little man with his million-dollar smile. Babies are great distractions if your mood is low. My husband can’t help but smile, make funny faces at him, coo and speak “baby” in accentuated tones to get that instant reaction of a smile – albeit a fleeting, two-second smile, but worth catching. Its ameliorating effects are worth all the effort.

A pretty good year

The past year, the fourth in recovery, has been relatively good. The year started with a week-long infection played out in a hospital isolation room, and he has just fought another one in the same hospital, but these infections have bookended an otherwise amazing 10 months of good health.

My husband just can’t seem to get away from the hospital gig and he has had two hospital procedures for internal “bits and pieces” in the past 12 months. He has been admitted to four different hospitals in four years – working up a sizeable hospital folder in each. We jokingly said we should write a hospital guide based on car parking, food, hospital shop, cafes, grades of coffee, distance from the front door where smokers congregate despite the “Do Not Smoke” signs (they have all failed miserably on this one), visitor bathrooms right down to the material in the dividing curtains on a ward to ceiling height and numbers of patients per room. I have rated all the hospitals on merit – the “guide” will never see the light of day, but it’s a good way to pass visiting time. The one area where all four hospitals have shone is nothing physical but nonetheless tangible. It’s the staff, with a particular nod to the nurses who do outstanding work in sometimes difficult conditions. To date, every hospital has scored an A+. I just wish they were paid accordingly.

We’re always struck by the amount of waste hospitals produce, especially the disposable gowns and masks when my husband is in isolation. On his last admission, I could not believe the high quality of the disposable gown, complete with proper material cuffs, Velcro fastenings and robust stitching that suggests more than a single use. The mouth-and-eye disposable masks are of an equally high standard. These masks and aprons have to go on anyone who enters his room, and he could have 20 a day between doctors, nurses, cleaning and meal staff. On previous visits a plastic apron and Donald Duck-type mask seemed to have done the trick – standards have certainly improved, but to what end? By the end of his hospital sojourn, my husband quips, “there must be about €4,000 worth of disposable material in that bin.”

After about 10 readmissions over the past four years with various infections, we have collated quite a number of fiscal improvements, but I doubt anyone would listen.

Caleb at Christmas.
Caleb at Christmas.

Take a toll

Hospital readmissions take their toll, mentally and physically.

They are a constant reminder of my husband’s illness and they can guarantee to arouse a number of unpleasant memories. Treading through the all familiar hospital corridors ignites my olfactory senses with mostly negative feelings redolent of anguish and stress – God knows what it does to my husband. His latest infection takes us both by surprise with its aggressive, nefarious nature. It kicks off as a bacterial virus before sneakily mutating into a viral infection with egregious consequences. A debilitating weakness overpowers him with three weeks shuffling between the bed and the couch, resurrecting unhappy thoughts of his early recovery days when he spent a lot of time on his own. “I know myself far too well at this stage.”

On the mend now, he has to pick himself up again, camouflaging any emotional setback by immersing himself back into his normal life at normal speed. He’s quite the expert.

I would love that 2019 would be infection free – a long shot given that his immune system is only four years old. A toddler’s immune system doesn’t stand much of a chance amid the viruses that the winter months unleash and neither does my husband’s. But it will improve over time – probably never as good as before but hey, beggars can’t be choosers.

Caleb on Christmas Eve.
Caleb on Christmas Eve.

In 2018 my husband had a small but significant scare where the C-word was mentioned, tested for and was back in our vernacular. My intake of breath deepened once more – my stomach knotted but thankfully the results were benign and I could exhale once more. The possibility of cancer present again can stop you in your tracks. We discussed this scenario and how we might play it out but we’re an effective team – ready to fight it together if need be. I cannot express the relief when we were told that a fight is not necessary.

One of the procedures that he had during the year was originally scheduled for May 19th, 2014, but it couldn’t take place as my husband was across town in another hospital being told of his leukaemia diagnosis.

Gruelling recovery

To finally get this procedure done, four years later, is another milestone for him and eliminates another medicine from his quotidian tablet intake. His second procedure removed pre-cancerous polyps from his colon. An unpleasant experience but anything that can keep cancer at bay can only be welcomed. It is to be repeated every four years, which will prevent the little blighters from developing into a metastasis state. Endoscopies have great efficacy and thank God for them.

This time four years ago my husband’s gruelling recovery from his bone marrow transplant was at its embryonic stage. He wasn’t aware that he would spend months and months, sitting listlessly on a couch – alone for most of the time while I was at work and the children at school. It was such a penitentiary experience.

And the further he gets away from that time in his life, the more amazing his recovery is. Four years ago, his energy levels would have been zilch - now he plays golf, we go for long walks - he’s even hitting the gym three times a week! It’s an amazing metamorphosis and a true testament to the exceptional medical care he received coupled with his own sheer grit and determination. He is an advertisement for life. We try to squeeze as much travelling and socialising in where we can – stuffing as much life as possible into the healthy months.

Caleb on his Christening day with Cliodna and Enda.
Caleb on his Christening day with Cliodna and Enda.

Devour life

We can now plan with as much certainty as most other people for nights out and holidays – it’s a nice privilege to get back. Life is there to be enjoyed. Go grab it, embrace it, devour it – enjoy your good health.

Because the old adage, you never know what is lying around the corner, still lurks out there in most of our lives.

Last year was good to our family – the high point being our little grandson. My husband can now add the new appellative of grandad to his current list of – son, brother, uncle, husband, father, survivor and if he attacks this new title as he has to “survivor”, then Caleb is in safe hands.

Caleb’s Christening.
Caleb’s Christening.

The new year will be a big year for our family. My deepest hope is primarily for good health for all of us. Kicked off celebrating our 30th wedding anniversary, a lot has happened since we marked our 25th anniversary. In May my husband will have reached the five-year clear date – a huge milestone for him and one we are looking forward to celebrating.

May will also be the month that my husband walks our daughter down the aisle – it’s hard to know which one is more worthy of celebration. Not every daughter is fortunate to have her father walk her down the aisle – I look forward to witnessing this privilege. I will do well to keep the tears at bay.

But they will be happy, thankful tears for what I hope will be a day of celebration honouring life, marriage and family.

I will be beyond grateful.

Cliodna's husband, Enda Sweeney, was diagnosed with Acute NK Cell Leukaemia in May, 2014. She has written several blogs on his recovery. This is her sixth blog. All her other blogs can be found on Facebook. The Irish Times has printed two of her previous blogs 1) Cancer will test the strength of any relationship and 2) The three faces – cancer, chemo and recovery

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