Surprise!

Back in February at Dylan's 12 month review we were told 'six more months' of chemo. I then worked out that 18 months is 78 weeks and counted on from that appointment. But I made a mistake...

Monday I made my usual three weekly call to the QMC to book Dylan in for his Chemotherapy appointment on the Tuesday. I had on my calendar that this was week 77 out of the 78 and would be his last week of actual Chemo as week 78 would be one of the weeks off. We were looking forward to marking these milestones together.

However it turns out I was wrong with my maths. I didn't count the first week he started treatment as week 'one' I just counted on from there. I also didn't count in the extra week he had before his 12 month review. So I was informed on the phone that LAST WEEK was actually week 78 so he was already finished Chemo. Dylan's consultant had even said 'no more Chemotherapy' in the diary.

This took me by complete surprise and I cried a lot once I got off the phone. I had been expecting Chemo this week, as had Dylan, so to be suddenly be told he had finished was a whole wave of emotions. I also felt a little robbed of the chance to celebrate his last dosage, it had been and gone without me realising it!

Obviously all this was pending Wednesday's pre booked CT scan to check the LCH is still 'Non Active' and we had a clinic appointment afterwards to confirm 'end of treatment' and go through details of what happens next.

But then on Tuesday we had some other sad news. My parents' dog had suddenly gotten very poorly over the weekend and it was discovered Tuesday morning that he had Cancer and was bleeding internally. Devastatingly it was already too late to help him, any attempts to remove the Cancer would have been in vain and he would likely have suffered so my parents' had to say goodbye to their beautiful German Shepherd.

This affected us all and tinged our mood with sadness. How could we possibly celebrate the very next day if we got some good news? What if we got more bad news? Emotions were running high and I was feeling angry, so angry with Cancer and the fact it seems to keep picking on us. Those that know me personally know that we've had a lot of Cancer in our family prior to Dylan. Some people go through life never facing hardship or illness and others seem to hit it every way they turn. I see so many families loosing to these diseases that celebrating feels almost bittersweet.

But then Dylan ringing that bell would be a huge 'F*CK YOU' to the disease that tried its hardest to kill him and would for us be in memory of those no longer with us.. 

So here we are.. Dylan's scan results were a bit anti-climactic this time with very little change but they are stable and there is no signs the disease is still active which is the main thing. We are not sure what will happen with regards to the remaining cysts or damage and scar tissue. We should have a review with the transplant team at GOSH and our respiratory doctors to talk about those issues over the next few months.

We have no idea exactly when the LCH activated but after an almost 2 year journey (from first symptoms) that has included; 18 Months of Chemotherapy, 26 Chest Drains for Pneumothoraces, a 5 Month stay in Hospital (with 23 days of that spent on Life Support), and 5 very VERY close calls.. TODAY our amazing superhero Dylan finally got to ring that pivotal End of Treatment Bell at Nottingham Children's Hospital signalling no more Chemotherapy!

He will still keep his Hickman line in situ for blood tests and until his repeat scans are done to check there is no relapse now that Chemotherapy has stopped, that should be reviewed at some point in November.

We are of course hopeful that the LCH doesn't EVER come back and that he can get his 'wigglies' out before Christmas, then hopefully we can start to think about putting the last 2 years behind us and focus on the future! <3