In the last blog I spoke about the day in May when our world stopped turning again. It was such a surreal time and myself and Paul were living in a bubble. It was truly unbelievable how Kerri readjusted to hospital life once again. Once Freddy had gone back in, the trauma of blood tests were in the past and Freddy really made Kerri’s life a bit easier. Each day she took in her stride, and she really got myself and Paul through it with her strength. How can we not be strong when this girl, is just powering through this whirlwind for the 4th time and managing to smile through most of it. Emotionally, we were up and down. In the room with Kerri I could be a power of strength but outside, I felt broken. Though everyone was warned, no tears in Kerri’s room, if you are upset, you just go for a walk, take a breather and head back in again.
The meeting with the Prof had taken place on Tuesday 22nd May and we were to meet with him again on the Friday. Ultimately we knew the choice was down to us, but once again how could we choose the option of bringing her home with no treatment. We really needed her to have chemo, after 5 years surely her body had recovered enough to tolerate it. These questions ran around our heads until it hurt. When you are making this decision for yourself, it is very black and white, chemo or no chemo and ultimately the decision is yours. Yes, you will have people who will convince you one way is better than the other but the buck stops with you. Being the advocate for your child is so hard in situations like this, as you question your reasoning for everything. Did we want chemo because of selfish reasons, because we don’t want to loose Kerri or is it the best thing for her? What if we decide chemo and it makes her so sick that we never get her home?Even trying to think what would Kerri choose if she was old enough, would she think she’s had enough of all this crap being put in her body or would she just run with it? Those days of thinking and overthinking really drained us, lack of sleep and constantly talking about the what ifs?
The Friday came and we met with the Prof, he was definitely more upbeat than the last meeting. He told us that he had contacted other experts outside of Europe and although the majority still thought palliative care was the best option, 2 had returned with a suggestion of one cycle of chemo. It was all we needed, other experts to agree that chemo was an option. Yes they were in a minority but at least some were on the same page as us. This was enough for the Prof too. The next sentence of – Right, here’s the plan- we are starting 5 days of chemo on Monday and then we will see – was enough to pick us back up out of the depths of despair and once again bring some hope and light. We left that room that day feeling so much more reassured and I really felt like someone had lifted a huge boulder of my shoulder. Its unbelievable how you can actually feel so happy about your child getting chemo but once again it was such a more hopeful option than the other one. We knew the next few weeks would be tough, and the reality of not knowing if the chemo had worked for about 4 weeks would be a hard wait but we knew it was the right decision.
Although we still remained anxious about the future, that absolute dread, that constant knot in my stomach had been somewhat alleviated. We had another focus, get Kerri through the chemo cycle as well as we could. Kerri started chemo on the Monday, and Monday night and Tuesday were awful. Constant vomiting until Tuesday evening when eventually a combination of 3 different anti-sickness medications given through Freddy managed to settle poor Kerri’s stomach. The other 3 days went fairly well and on Friday she had her final dose and that was it. We now had to let it do its job.
Most of the side effects of chemo don’t rise their head until 7-14 days after the chemo is given. We knew we were going to have to discuss the hair-loss with Kerri. I just couldn’t do it. How could I tell my girl, who has just got used to long hair, loved getting it straightened and blow dried that she was going to be bald again for the 4th time? I even tried looking back at old photos with Kerri to see would she mention the fact she was bald, but she never did. So Paul took the bull by the horns, sent me off for a coffee and had a chat with Kerri. I couldn’t believe what she said to me when I came back- ‘Mam, did you hear I’m going bald again? I’m gonna look like Dad! And I definitely don’t want a wig, Dad is going to bring me shopping for hats….. 10 hats!!!’ And that was that! All that worry, and Kerri was ok with it. Once again, showing her strength and courage.. I was in awe of her that day and every day really.