Today he had his 4th dose of his first chemotharapy drug Vinblastine, yesterday they also started him on another type that he will have for 5 days this week then a 3 week break. He is on steroids daily and they are monitoring his blood counts to ensure non of his levels drop too low. He is also on lots types of antibiotic, anti sickness, antacid, folic acid and iron supplements to boost his blood production and prevent the need for transfusion (just incase he needs a transplant one day) but the iron is making his tummy sore at points. We don't have any major hair loss yet, just a few strands falling out here and there but hair loss is a small price to pay if the treatment works.
He had a new left sided chest drain on Monday morning after it became dislodged again overnight and he had a new pneumothorax. It doesn't look like the pleurodisis has worked yet but only time will tell with that one. He also decided last night and this morning that he didn't want the two right hand chest drains in and they both came out all by themselves, which was fairly amusing! They then clamped the left drain to see where we were at with both sides.. The right hand side is VERY slowly reaccumulating but not enough to put a new drain in yet so the overnight plan is to pop him back on oxygen to help it reabsorb and reassess both sides in the morning, obviously if he worsens overnight they will deal with it accordingly.
We are waiting for Oncology and Radiology to have a discussion about another CT scan to get a baseline of where we are at now, as obviously Dylan's lungs will have gotten worse between his original scan and the date treatment started. However, it appears they can actually see a marked improvement on the most recent X-rays compared to those from December / January and even compared to the one from 11th February so this is amazing! Now obviously we know that just because the cysts are resolving / bursting doesn't mean it'll be healthy tissue left behind, those parts will always be scarred, but hopefully it'll make it easier to see how much healthy tissue his lungs actually have. Plus less cysts = less collapsed lungs eventually and maybe one day it might even stop happening altogether, fingers crossed!
What we need now is time.. time for the treatment to consolidate all the cysts, time for the cysts to stop bursting and the lungs to stop constantly collapsing and as it stands we have that time, Dylan is doing extremely well despite all obstacles in his way! The biggest issue at present is obviously the constant pnemothoraces but I cannot fault how swiftly and efficiently the team dealt with it all on Monday.. and we now have a plan in place, so if they continue to be managed properly then eventually, slowly we will get there...
As the PICU consultant said today.. "We aren't out of the woods yet but the trees are definitely clearing.."
No comments:
Post a Comment