The cuteness of Ciara...

Ciara was born in March 2011 with Down Syndrome and despite fears ... she was our perfect baby. She had a few health complications. She needed a small heart operation and the almost obligatory tonsillectomy (due to sleep apnea in DS). There was also a stint in PICU when we nearly lost her due to one of her several chest infections. But OMG she loved life....

The next couple of years Ciara went from strength to strength. She attended her mainstream preschool and reception with no unexpected problems. In September '16 she started Year 1... our grown up girl was flourishing.

A rather sh*t Christmas.

On 25th Nov '16 Ciara started limping we wondered which fall had caused it!! A few days later Ciara couldn't weight bear and after several trips to our local A&E they admitted her with suspected Septic Arthritis in her right hip. This is a medical emergency as it wears through the bone causing lifelong arthritis... An adult orthopedic surgeon cut her hip open, washed it out and aspirated a very large amount of fluid from the joint. The fluid wasn't puss as they had expected..still the treated her with high dose IV antibiotics for a few weeks.

For a while Ciara seemed to be getting better (due to reduced pressure in her hip), but something didn't seem right and she was in some pain. She tried to go back to school, but by Christmas we'd had enough and we took her to a children's hospital where we knew she'd be able to have an MRI (our local didn't do that). The pediatric orthopedic consultant was shocked when he eventually saw the MRI, he aspitated her hip again. By now she was having trouble using her left arm too and the MRI showed fluid in the bone.... the surgeon drilled into the bone. Ciara took more IV medicine than her body could manage and the various consultants debated (Rheumatoid, Infectious Diseases, Orthopedic and Hematology)... for weeks. There was no indication in her blood but Hematology ordered a bone marrow aspirate. They were looking for cancer..... and then they found it!!

Diagnosis

On 21st January our nightmare began Ciara was diagnosed with B- Cell Acute Lymphoblastic Leukemia and her bone marrow by now was 79% cancerous. She was blue lighted to the Royal Marsden in Sutton and her grueling treatment of chemo and steroids began. We weren't allowed leave the hospital for 5 weeks as the induction phase causes extra problems for those with Down Syndrome. We lost our child to the morphine pump and to her fear. She screamed and rocked and shouted 'shut up' for the entire time. Her communication is limited and it was hard for her to understand the torture of all the procedures and the pain. Then at the end of induction we were devastated to find out that the chemo hadn't been as effective as hoped for and Ciara was moved onto a high risk protocol. We were sent home but there still hasn't been any respite from this treatment, which is due to end in July '19 if everything goes to plan (which it never does). Ciara is often in hospital with side effects from the treatment or infections. Some chemo treatments have been delayed or skipped completely which adds to our concern about relapse. At home she is unwell and in pain. She's on Morphine, on daily antibiotics, she nauseous, has nerve damage and is weak. She hasn't been able to attend school for over a year.

Childhood Cancer

While at the Royal Marsden we were in a shared bay and spent nights listening to children's sobbing and vomiting....continually... all night. We saw so many return with relapse and so many who have spent their whole young lives battling this awful disease. In the private rooms the children were dying.

I'm under no illusion..... Ciara is fighting for her life. With ALL the prognosis is good.... but with Down Syndrome.... not so much so. Also Ciara's high risk protocol in harsher and longer than for any other cancer; the side effects can be catastrophic and last into adulthood ... but so long as she gets there!!!

There is a up side ... the frontline treatment is due to end in October and by Christmas Ciara might be feeling a little better. She might be able to go to school in 2018. General Anesthetics will continue every month for chemo into her spinal cerebral fluid. Daily chemo, IV chemo and monthly steroids will still be our normal and some hospital stays are inevitable. The great thing is we now know Ciara is in remission.... the next 18 months drugs are to keep the cancer away.