2 weeks old and diagnosed with Eye Cancer

 

I suffered from Bilateral Retinoblastoma (Eye Cancer in both eyes), having my right eye treated with radiotherapy as a child however the left was taken over by the tumor. So as a first time mother, after a long labour ending in a C Section, I was straight back to hospital with 2 week old Lily to be tested for the condition. She underwent an MRI scan, lumbur puncture and had a hickman line inserted that same week at starship. She then had her first dose of chemo at 3 weeks old the following week and an EUA (examination under anisthetic) 4 weeks after that. As Lily grows and the cells in her eyes form and divide, new little tumors can start but are easily lasered before turning into anything.

 

Since then Lily has chemotherapy twice a month and an EUA once a month. As well as this Lily takes medication to help with nausea and to boost her immune system during Chemo. It is unknown how long Lily will need to continue her treatment plan as this depends how well the tumor's respond, however it is likely to be years before she can stop.

 

To top it all off, Lily has a soft cleft palate that they found at birth and couldn't breast feed naturally so we were carting around where ever we went, Waitakere Hospitals double electric breast pump, special bottles, sterilising tablets and bottle/pump washing up gear. I pumped around the clock every 3-4hours. My goal was 3 months and I pressed on to 6 months expressing. The hours slowly extended out as she took longer feeds in between expressing.

 

Lilys palate will be mended when she is able to have a break from Chemo, depending how the tumor is looking. It can't be done at the same time as chemo as she won't be able to heal due to her white cell count dropping. It can be up to 18mths to be repaired but the sooner the better as it can affect her speech.

 

We've been really strong these passed 10 months. As soon as we got the news, I was like, right whats the plan, where do we go from here? It wasn't easy hearing the result even though we were aware of the possability of it. I have the odd day that I feel gutted but so far so good with treatment. Chemo days I find easier than Eua days...the hour waiting while she is in theatre is hard! I have also been really fortunate to meet other parents and children with the same condition and because I have experienced the condition have been able to provide some reasurance that their children can still live wonderful lives.

 

Goals are important as life still carries on and we stay positive with having things to look forward to. One day this will all be over and we can look back and say YES, NO MORE!!! and be so proud!! Our long term goal and reward to ourselves will be a family holiday to Fiji!!

 

 Thank you Mel for sharing Lily's story, you are an insperation!