In my last blog I gave a brief summary of Kerri’s first 9 months of treatment, I really just dipped a toe in the water but it gave an idea of how this roller-coaster journey began. From late 2010 and into 2011, we started to spend more time at home and less time in hospital. Kerri continued to have treatment but tolerated it well. In a strange way, Kerri’s young years worked in her favor to some degree in the early days of treatment, kids are so resilient when they are sick and i think Kerri just thought every child goes through this. Kerri was too young to question what was going on, and its something we saw other parents on St Johns ward dealing with. As a parent watching your child dealing with a serious illness is heartbreaking, but for the parents of older children and teenagers, the ‘Why me? and plenty more questions was another emotional difficulty to be dealt with.
So back to 2011 and Kerri even got to start playschool. Proud parents is a slight understatement! She also got the hickman line (Freddy)in her chest removed so Kerri could once again go swimming and enjoy a bath. Although some forms of normality returned to our life, we always had one thing missing… Peace of mind. Peace of mind is a luxury we all take for granted until we loose it, and we lost it on that day on October and we have been without it since, as the worry is constant even when Kerri is in remission and living her life to the full.
Just before Christmas 2011, Kerri had a temperature and was kept in Our Lady’s Children’s hospital for 3 nights but we got home and Kerri returned to being in good form. We enjoyed Christmas at home but on New Years day 2012, Kerri developed a bad eye infection along with high temperatures, we were once again admitted to hospital. On the 3rd January 2012, our fears of Kerri relapsing became a reality.. We were all broken once again. The worst case of deja vu. We relived everything once again, Kerri had to start treatment once again, she had to go to theatre to get Freddy back in. So in the blink of an eye our ‘normal’ was eradicated again.. The other heartbreaking fact of Kerri relapsing in January 2012 was that we were due to finish treatment late March 2012. We were so close to the finishing line, but now that line was once again pushed out of sight and we had another long road ahead.
We met with Professor Owen Smith and learned that Kerri’s relapse was more complicated than we first thought. Kerri’s first diagnosis was Acute Lymphoblastic Leukemia(ALL), but she had developed Acute Myeloid Leukemia(AML) which was actually caused by the treatment she received for ALL. Now whatever about the devastation learning of the relapse, to know it was caused by the treatment is a hard pil to swallow. Now this is a very rare side effect of treatment but it really was a slap in the face for us. Treatment induced AML, as it is known, is treated by Radiotherapy intense chemotherapy followed by a Bone Marrow Transplant. So immediately the search began for a donor, and Kerri continued on Chemo once again.
Before receiving a bone marrow transplant Kerri needed lots of investigations. These were to establish a baseline level on each organ so if any complications arise during transplant they have previous tests to compare them too. So we began all these tests, including heart, lung, liver, kidney and eyes, all relatively normal. We then went for the hearing test, and the three of us headed off to audiology department oblivious to what lay ahead. Kerri sat through the test and at times i had to cover my own ears but absolutely no response from Kerri. The audiologist was persistent in his tests, thinking maybe due to Kerri only being 4 years old, was she unreliable with her answers. But no, the only plausible answer was that Kerri was profoundly deaf. Once again, the rug was pulled out from beneath us. Tears ensued, with lots of ‘it just couldn’t be true’. Unfortunately it was true, and we later were told it was from the antibiotics Kerri received throughout all the infections she had throughout 2009-2010. I have to be honest, I was heartbroken about Kerri being deaf, as life had been tough enough on her and now everything moving forward would be harder.
We left the audiology department that day to return to St Johns ward, both myself and Paul red-eyed(Kerri in her usual good spirits) and we met and briefly spoke to another Mam from St Johns ward. Catherine was walking down the corridor with her son Philip(Kerri used to run into Philip’s room regularly on her laps around the ward) and to say she put some perspective on our news is an understatement. We literally met the best person at a time we thought the arse had fallen out of our world again.Catherine’s one line of ‘ All I want is to get Philip to his 21st’ was so poignant that we really had to pick ourselves up and dust ourselves off and carry on. I am forever grateful to Catherine for the clarity she gave us that day.
Perspective is one thing that St Johns ward delivers in bucketfuls. There is always someone in a worse situation and wallowing is not an option.. We have to be grateful for so many things and the core of that gratitude is that Kerri is still with us.
Philip passed away while we were in the Transplant Unit in May 2012. He celebrated his 21st in heaven in 2016. Forever rocking the stars with his love for heavy metal.. Rock on Philip xxxx