Initially it was thought this diagnosis could be treated in 6 months,it has since been confirmed treatment will be continuing till August 2023, Funds raised between now and April will not only help with day to day hospital expenses but to help with costs to support with childcare for Koda and hopefully to allow some family support to be able to come over to help.
Every round we seem to get some new surprises and not even the good kind, Connor has reacted poorly to one of the Chemos on this round which resulted in acute pancreatitis on top of Mucositis and vomiting.18 nights in hospital feeling absolutely miserable, with childcare issues our youngest koda also has been up at the hospital with my wife as we have limited support to be able to help us with childcare. Seems so long since we have all been under 1 roof and cherish it immensely when that happens. Initially we were rather naive in thinking 6 months for all this but have since been corrected. With the treatment protocol Connor is on we have more testing at end of this round then Chemo and radiation coming at some stage down the track. It is expected that our treatment will end in August 2023 giving us another 17 months of this.
We are now on our 2nd round of intensification/consolidation which consists of 6 full days of extremely high dose chemos (about 7-8 different chemos) and about 15 days of recovery from those 6 days. Before doing it over again. Connor has ended up on morphine infusions as he has ended up with extremely sore mucositis which basically is ulcers throughout the mouth, throat and stomach, stripping away the linings, fevers and bleeding noses.Nutrition is now given through his iv line and nose tube as he won't eat or drink. Out of the 21 days in a cycle we are expected to be in the hospital for most of that with maybe the odd day home if well enough. Connor has been in so much pain he hasn't wanted to talk, play,walk or do anything kids do. Extremely hard on our family as with so many nights in hospital it means my wife can't be home to spend time with our 15month old and in turn may go days without seeing him as I need to keep up work to insure our financial needs are met. Looks like we will have a hospital christmas this year, not quite sure what that will look like but hopefully we can all be together.
This week Connor had his PET scan to determine the next course of action for his treatment, as well as a bone marrow test These results were not quite what we had hoped for and has now put us on the path for bone marrow transplant, which would have us in starship hospital for at least 4months. The doctors have advised us that Connor will now have 3 blocks of 1 month at a time intensification treatment remaining in the hospital throughout this. the implications of covid-19 means that our family will be divided as we cannot all be at the hospital at the same time.
One Sunday we took Connor and Koda swimming, after swimming things weren't right. Connor was screaming in agony with pain in his right leg, we couldn't see anything so took him to the doctor. The doctor examined Connor and couldn't determine the problem and directed us to give Connor pain relief and if it isn't better in 10 days come back and we will do x-rays.
4 days later he was in absolute agony, not walking, favouring one side so we took him to another doctor, who immediately sent us to Christchurch Paediatrics, where we had an x-ray and blood tests.
The x-ray showed no sign of fractures, and the blood tests were abnormal, next we were off for an MRI of Connor's right leg.
After the MRI doctor's told us Connor had a bone infection, this can be treated with antibiotics and he should be up walking, back to normal in a couple of weeks.
3 days up at the hospital my wife was up there on the Monday while I went to work, straight after work I went up to the hospital, we had dinner, then as I was about to head home to our youngest, the doctor's were headed our way and they said great both of you are here we need to have a chat let's get a nurse to watch Connor while we talk.
We went into a small meeting room and the doctor told us that after further review of the MRI, radiologists have identified a large mass on Connor's pelvis and that this was cancerous and will be confirmed tomorrow after a full body MRI.
Not only was the mass confirmed to be Cancer but we found out that Connor was riddled with it in his spinal fluid, a mass on his spine, a large mass on his pelvis, in his kidney's, and a few masses in his little ankle bones (DEVASTATION HIT).
A couple days later we got the full diagnosis of a rare Acute Lymphoblastic Lymphoma B-cell with Philadelphia Positive Chromosome.
Now we have recently finished Induction A and although he isn't walking, Connor is responding very well to treatment. 1st stage of treatment is a minor victory and our doctor has said he couldn't have done any better.
