We had a wonderful Easter weekend together, the whole family, meeting up with friends
Going to egg hunts with the boys. Seeing them laughing and running. It felt almost normal. I was part of the real world, Jacob was feeling better than ever. In this moments, with laughter and sunshine I could stilling feel a pain in my heart. Like I could not believe or maybe I knew that I had to be prepared, that something more was coming. Or it is something that will forever follow me, the worry that any time, in the best of times something bad can happen, your child. I hate that feeling. But it makes me more aware of the moment, we have to live in the moment of beauty.
I have been screaming to God, asking why, telling him I had enough. Asking him to heal Jacob
So please say a prayer for Jacob, for his lung to heal, for the leukemia to stay away forever
Pray for strength for me and David
On the evening of Easter, after all the fun and sunshine, Jacob started to complain about chest pain in the left lung and difficulty breathing.
David drove him to the emergency room and X-rays and ct scans were done. They showed that the infection in his lung had start to grow, and is now worse than ever. It takes up about one fourth of Jacobs lung and there is also some fluid.
Doctors think the reason for this is that Jacob has been on a too low dose of anti fundal medicine. They added one more anti fungal and he is now getting them iv and they are discussing how we are going to proceed.
Another X-ray was done yesterday to look at the fluid and an ultrasound will be done today to decide if it is a big enough amount of fluid for them to do a thoracentesis, a procedure where they with a needle take out the fluid to get a better understanding of what is in there.
One of Jacobs chemotherapy treatments will be skipped for this month as it is more important now to get on top of the fungal infection, that we are still assuming is the cause of all this as no proof of it has been shown on either the broncoscopy or the biopsy from before.
Clinically Jacob is doing well, no fevers, just a bad cough…
we have been to the playroom, having a coffee at Starbucks and playing his games.
Soon off to the playroom again to check out today’s activities.
Right now we do not know for how long we will have to stay. At least a couple of more days. Until we have enough data and a plan on how much and what type of medicines we need to give.