Getting a tattoo and having a dry August for the Reeves

Shorty before having a mastectomy for her own cancer journey, Hayley Reeves beautiful 2 year old daughter Jade was diagnosed with a large brain tumour. 5 operations later the little trooper is making huge strides in her recovery with a big smile on her brave facer!

Jade's story according to her mum Hayley......

Life before Jades diagnosis was short, she was only 2 and we had just moved house. She hadn't even started formal daycare. I had just recovered from breast cancer in 2013 and we were just starting to do normal things like family holidays to QLD and going to the park and beach. Jade had started vomiting daily and wetting her pants, she also became very lethargic and not wanting to play or leave the house. She also had developed a little tremor on her right side.
After a few weeks in and out of the GPs we had our second trip to emergency on the advice of our GP after jade was unable to climb up onto her chair in her surgery, we had one of the doctors in ED decide to keep us overnight and book her for an MRI the next day. Thinking back I wasn't suspicious until the MRI was over and they came to give us the results almost immediately.

We just told Jade that she had something in her brain and the doctors and nurses were going to fix it. She was really too young to understand or even know what a hospital was. Disbelief is the only way to describe the feeling. How could this possibly happen to your tiny little two year old. What was your reaction? We were just really sad that she had this massive tumour and was too young to understand what was happening and that it had probably been there growing for quite a while without any symptoms.

She had the MRI on the Friday and then went in for what would be the 1st of 5 brain surgeries on the monday. It went for over 6 hours. The tumour covered the best part of the left side of her brain. She spent 10 days in ICU and got transferred to the ward on her 3rd birthday. She then spent the next 3 months having chemo and had very little time out of hospital. She managed a few days over christmas but ended up back in after boxing day with a nasty infection, the first of many. the first brain shunt they put in needed to be replaced after they discovered she had an infection in her brain fluid. She had to go back into ICU and have an external drain for 2 weeks before they could replace the shunt. It wasn’t until early march that she finished numerous rounds of chemo, had a new shunt put in that they let us go home. She unfortunately had a seizure and it was time for another MRI. The MRI showed that the tumour had not shrunk, she then spent the next few weeks going into surgery on the monday to have as much tumour removed, a trip to ICU, getting transferred to the ward then home for the weekend before we returned on the monday to do it all again. We did this 3 weeks in a row which took her to 4 brain surgeries. The 4th surgery unfortunately damaged her speech and right side so she has had to learn everything again, it took her over a month to even be able to sit up by herself. She couldn’t make a sound for quite a while either. She then undertook a stem cell transplant with 3 more rounds of chemo. An MRI at the end of that treatment showed the smallest amount of tumour which saw her back into surgery for the 5th effort to remove the last piece of the tumour.

Jade was in the John Hunter Childrens Hospital. Her oncologist is Dr Frank Alvaro and her brain surgeon is Dr Peter Spittaler.
Jade had 5 brain surgeries, insertion of a brain shunt, 4 rounds of chemo then another 3 rounds of chemo with a stem cell transplant during each of those 3 rounds.

Jade was a very cooperative patient. She rarely complained during procedures of which were every few hours of every day. The nurses use to comment on how great she was when she had her obs done, numerous times a day and was really good at taking all her meds but eventually needed an NG tube put in as they became too frequent and the volume was hard to stomach. As long as there was a familiar person with her to read books or do craft she was content. She became and still is very attached to the OT and Pyhsio who would visit her as much as they could, she still sees them weeekly.

Jade has speech delays and a right side weakness. It is unsure of her complete recovery, her brain is rewiring and finding alternate pathways to do the things that were damaged during her treatment.

Jade still goes to the hospital weekly for therapy but I don’t think I will ever have any sense of 'relief'', you just learn to get through each day and enjoy every moment. She will also continue to have MRI’s for the next few years.
February was a big month for Jade. She started preschool, physical culture and had her NG tube taken out. She also managed to be weened of all her meds apart from an ongoing seizure preventative. She also began to walk unaided and form 3-4 word sentences which are mostly understandable.