15/09/2024
Unfortunately we know this first hand...
*Trigger Warnings: Seizures, Near Death Experience, Chemotherapy Side Effects. Also this is a long post.*
Just 6 weeks into Josh's treatment, he woke from a routine lumbar puncture procedure - during leukaemia treatment these are done regularly to take a sample but also to inject chemotherapy into the spine - and had a seizure. An MRI scan revealed this was caused by an extensive blood clot in his brain called a sinus venus thrombosis which had begun to bleed in his frontal lobe.
Josh was admitted into hospital to be monitored which is very fortunate as that evening Josh began having back-to-back seizures. The emergency button was used and despite a bay full of Doctors, they were unable to stabilise Josh at that time. The decision was made to rush Josh to the theatre to sedate him and put in a breathing tube so he could be on a ventilator.
In the PICU Josh was monitored around the clock for 24 hours and despite sedation continued to have some more seizures. The next 24 hours he became more stable and didn't have any more seizures. Thankfully it was confirmed that Josh's clot and bleed had not been caused by a relapse. However, the Doctors were concerned that Josh had had a stroke. Again thankfully, tests confirmed this to not be the case.
It took several months for Josh to show significant signs of recovery from this event. He was a shell of himself for a long time. He also became very poorly with norovirus during this time and this caused him to lose 25% of his body weight resulting in him needing a feeding tube so we could supplement his diet with 4 tube feeds a day. Josh also had to have blood thinning injections twice a day for 9 months, alongside his chemotherapy medications, vitamin supplements as he struggled to maintain his potassium levels especially and antiseizure medication.
Once the clot had cleared, it left behind significant scarring. Something we later learnt would cause further seizures. He is now on antiseizure medication twice a day for the foreseeable and has to carry around a rescue dose should he ever, heaven forbid, have another seizure lasting more than 5 minutes.
This was a rare side effect of one of Josh's lifesaving chemotherapy drugs. But unfortunately this is not the only rare long-lasting side effect that Josh has experienced.
A little over a year into treatment, Josh was experiencing pain in his shins. This was originally put down to a common side effect of one of the chemos along with the steroids children being treated for leukaemia are given, and Josh was given strong painkillers. This pain continued to increase despite this, so finally an x-ray was done of his legs. The x-ray showed damage in his hip that required an MRI to investigate.
Josh was diagnosed with a condition called Advanced Avascular Necrosis in his right hip/femur. Avascular Necrosis or AVN is a disease that results from the temporary or permanent loss of blood supply to the bone. When the blood supply is cut off, the bone tissue dies and the bone can collapse. As Josh's case was advanced, the top of his femur bone had already collapsed and as you can imagine, this limits Josh's mobility to this day. He will likely need a hip replacement as early as in his 20s.
This is one of the 'whys' for the importance of childhood cancer awareness. Many of the treatments have been engineered for adults and not children even though children and teens' bodies are different. Childhood cancer research is essential to find better and gentler treatments for these incredible warriors! 🦁🧡💛
Credit to Children's Cancer and Leukaemia Group - CCLG for the picture🎗️
