Updates on eyesight and immune function

Well since August, we had a few bloods taken and Harrison's immune function continues to dwindle. Doctors had him on IVIG temporarily to work out if his immune function would improve. It did but only while receiving IVIG. As soon as it left his system his numbers drop, so IVIG for the long term it is. We went through discussion of having it via a PORT, by monthly canula insertion or by subcutaneous I fusion( into belly fat)

As Harrison is extremely hard to canulate we tossed about a PORT vs sub cut
The port insertion won due to his extreme hatred of needles. Doing subcut is two - three times a week and I would learn the method to do this. So for now until he learns to cope better with needles he underwent surgery to place a portacath in his chest wall that doctors access monthly to run his IVIG.

So far this is working very nicely. As each month passes he gets better at this - it was inserted in October.

We are now counting down days to 13/3/15. We go for a day visit down to kids hospital to see his bone marrow team, immunology team and have a repeat eye ultrasound. Sadly we discovered right on Christmas time that the tumour he has in the left eye has started to grow in his right eye also. It was a for way back at the middle of feb and then July last rate, but it is now visible to the opthamologist when he checked his eye in December.

I am dreading this day. It will be a long day, bloods have to be taken & this ultrasound. Both tests mean I get to hold him down kicking and screaming for them. I also want to play ostrich and not think about this right eye.  I continue to scour the internet for any options to reverse the tumour in the left eye , and stop it growing more in the right. So far anything trial like I have found is not possible for Harrison, due to the continued immune deficiency and that the overall degeneration of his eyesight is too advanced to be considered for trials. That and he is only 7.
Oh well .. I keep looking , hoping , and praying that we come across a miracle.

This year Harrison's class have transitioned to his siblings primary school as a satellite class so educationally he is doing nicely and he has made some great little friends. There are always blessings in life.

Next post will be after the bloods and ultrasound to update on his progress

And while we are at it keep going strongly on your journey Katlyn... She has  had her bone marrow transplant and is waiting in T cells to engraft. We keep you in our thoughts  and pray you get grata news very soon!