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How are you, my friend asked me today
I don’t know I said, I don’t feel anything, like life is paused, like I’m just waiting
The storm is over but I’m afraid it will start again.

We have been home a while now but my bag from our last hospitalization is still unpacked. 
The dark cloud of worry that is hanging over me is his lung infection, I’m still giving him one anti fungal medication iv in his chest tube and one by mouth. But the other day the doctor called and said the one that he has been taking orally is not working, for some reason he is metabolizing it too fast. 
So we started on a new medication, hoping that will work.

Last week Jacob got very nauseous from one medication and egen he vomited his nose tube came out. We decided to not put it back, as long as he is taking the medications by mouth and eating well we will not need it. I hope we will never need it again.

The last weeks have been great, Jacob has been able to attend school and has been very excited going. 
We have enjoyed the sunshine and the boys have been playing outside.

Please pray for the anti fungal medication to work
For whatever is going on in Jacobs lung to clear
For leukemia to stay away
For strength to our family

Sofia 

We left the hospital last Wednesday as Jacob was doing well enough. 
They sent us home after teaching me how to give one of the anti fungal medications IV. This will be given until they can measure a good level of the other one that he is taking by mouth. Also they put him on antibiotic for potential bacterial pneumonia. So now we are home giving 5 different medicines twice daily by mouth and iv med once a day…
But again Jacob is doing fine, he is happy, he is eating well, playing and running.
We are going to the hospital twice a week now until the infection is under control and then weekly until we get rid of it.

This morning we all woke up early and went down to Juanita to participate in the captain jacks 8k race, supporting the leukemia and lymphoma society. They had a kids dash to start with and the boys were excited to run. And Jacob ran, after a while I saw him slow down, but he kept going, it was hard to see. He used to be so fast, and seeing him try smiling and saying,
I will run even if I don’t have any reflexes I’ll just be careful so I don’t fall.
I was worried he would get pain in his lungs, but he asked for some water, caught his breath and then continued enjoying the activities. 
I think that gave me the power to run, if my little son with decreased lung capacity and without reflexes in his knees can run without complaining, so can I.

Tomorrow Jacob will go to school for a few hours and he is very excited about it. 

Sofia

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.

Sofia