Team Izzy

On the 22nd of September she came home from a two night sleep over at my parents and when patting her to sleep Heidi noticed the lump again felt bigger, looked red and her hair was sitting different. On the 23rd September Heidi took her to the Dr’s just to make sure that she had not really fractured her skull or something. He sent us off to get an ultra sound, and even Heidi could tell it looked wrong. They called in the Dr at the imaging place to have a look and he said he needed to do X-rays and would speak to our GP. He quickly arranged everything. Izzy was so brave and co-operative whilst they did the X-rays. They then asked me to wait for the results (previously it was going to be 4 hours before they would be available) The Dr came out and handed Heidi the results and said we needed to go straight back to the GP, that it was not a simple bump on the head and don’t be surprised if we are sent to the Children’s hospital today. Back at the GP we were seen to immediately and given a referral to go straight to A&E at the Children’s Hospital. Heidi rang Brian and asked him to meet them there. Izzy and Heidi arrived at the parking station and Heidi double checked the height and drove in. Unfortunately she forgot that the ski’s and roof racks where still on the Jeep! The height bar was swinging and the horrible crunching noise was the ski’s hit the roof of the ramp – and people yelling at her and waving arms! She was not game enough to risk another ramp so waited till someone left that level to park the Jeep. They finally made it to Triage and handed over referral still in a state of disbelief – Brian arrived just as the clerk was admitting us. We would then spend the day in A&E surrounded by all this sick children when our daughter looked the picture of health. They told us they thought she had a blood disorder, did we have any family history etc and waiting for a consult. Eventually the Dr’s from Oncology came and spoke to us about Langerhans Cell Histicytosis. IT was all a bit surreal to be honest. Getting blood from Izzy was a night mare and took 4 attempts and her screaming down the hospital. On 26th September we had our first Oncology appointment. They had hoped to also do a biopsy then and a full skeletal scan. Unfortunately they would not do the scan without the biopsy result, and they would not do the biopsy with out more scans! On the 28th September Izzy had her 1st MRI. She laughed so much with the laughing gas! She woke up very happy from the general. On the 30th September Izzy had her 1st biopsy, again with a general. She was a bit more groggy coming out of the general this time. MRI results where good and indicated brain was not impacted by the lesion
On the 4th October we had our follow up appointment and they confirmed Izzy had Langerhans Cell Histiocytosis. We also met with Dr Dalla Pozza, head of Oncology, for the first time. We are now in the system and hopefully our appointments will become more scheduled so we can plan around them.
12th October – X-rays full skeletal scan
22nd October – PET scan and ultra sound
23rd October – Results - no other lesions. Neuro Surgery consult, they will remove the lesion
27th October - Lesion removed
28th October - Home from hospital
19th November - glucose testing and Oncology appointment
1st Dec - neuro surgeon followup