Nico finished the second phase of treatment (consolidation) and was set to start the next (interim maintenance), but again his neutrophil count was too low and we are delayed another week. The last twelve weeks of chemotherapy have actually taken us almost eighteen weeks because of these delays. I know that I have said it before, but even though I am glad that Nico gets a break from all these poisons, the longer it takes to get through the intense phase, the longer before he can rejoin society and start living his own little life again.
Since we are not getting chemotherapy this week, I thought it might be a good time to give the back-story to Nico’s diagnosis.
Jeff was laid-off from his job about two weeks before Christmas. We lost our benefits (including health care coverage) on December 31. This was stressful, but Jeff actually had another job offer on the table, and all three of us were set to travel to Bermuda on January 3rd, to look at real estate and accept what was a very lucrative job opportunity for Jeff. On January 2nd, I noticed Nico was running a fever and took him to the pediatrician because I was worried that it was his ears and the flight would prove painful. That was the day Nico was diagnosed with leukemia.
Jeff did receive a severance and we enrolled in COBRA for almost $1800/month. We clearly were not able to make the trip to Bermuda, but the company still extended the offer knowing our circumstances. Unfortunately for the next 3+ years, Nico cannot be more than one hour from a children’s hospital and Bermuda does not have either a children’s hospital or even a pediatric oncologist. Jeff turned the job down.
We have been living on Jeff’s severance and our savings for almost 4 ½ months. This has been difficult financially, but honestly, in some ways the timing was ideal because both Jeff and I have been there with Nico through all of his treatment thus far.
Life has a way of working things out, and reminding us that we have very little control over anything. As the weeks of unemployment turned into months, Jeff and I decided that it would be smarter to move into my mother’s house in Arizona to extend the life of our savings. We gave notice to our landlord, and literally two weeks before we were set to move two things happened back to back. Jeff got a job offer here in Salt Lake City and my mother called to inform us that while making home improvements in anticipation of our arrival, her roofer discovered that she had a serious mold problem. Fungal infections are incredibly dangerous to anyone with a suppressed immune system, so clearly Arizona was off the table.
We had two weeks to find a new place since our old house was already rented out. In addition to the time crunch, Jeff was starting a new job and Nico was getting the Erwinia injections every Monday, Wednesday and Friday. It got stressful. We found a gorgeous condo (no yard work – yay!) that was over our budget, but we decided that we needed to do something for ourselves even if that was not the financially responsible decision. So Jeff cashed out some of his retirement so that we did not have to stress about where we were going to be living anymore.
We will officially be insured again very soon and get to wave bye-bye to the $1800 COBRA payment, so that will help too. We are actually very grateful that COBRA was an option because Nico’s medical bills over the last four months exceed two hundred and fifty thousand dollars.
Synopsis – lost job, lost benefits, child is diagnosed with leukemia (all in 2 weeks). It looks like we jumped the first two hurdles though and we are running full force at number three and ready to take flight.
This road is hard. And even though I knew in theory that Jeff’s job loss and the huge expenditure of money were adding to my stress, all I can ever really worry about now is my son’s life. We would gladly hand over everything we own and put down our own lives for that little boy. He is what matters most.
So for now, back to unpacking . . .
PS – If you only read the updates on Caring Bridge, you might want to check out the post from yesterday on WarriorNico.com. I posted some pictures from Nico’s school that are too cute for words.
Since we are not getting chemotherapy this week, I thought it might be a good time to give the back-story to Nico’s diagnosis.
Jeff was laid-off from his job about two weeks before Christmas. We lost our benefits (including health care coverage) on December 31. This was stressful, but Jeff actually had another job offer on the table, and all three of us were set to travel to Bermuda on January 3rd, to look at real estate and accept what was a very lucrative job opportunity for Jeff. On January 2nd, I noticed Nico was running a fever and took him to the pediatrician because I was worried that it was his ears and the flight would prove painful. That was the day Nico was diagnosed with leukemia.
Jeff did receive a severance and we enrolled in COBRA for almost $1800/month. We clearly were not able to make the trip to Bermuda, but the company still extended the offer knowing our circumstances. Unfortunately for the next 3+ years, Nico cannot be more than one hour from a children’s hospital and Bermuda does not have either a children’s hospital or even a pediatric oncologist. Jeff turned the job down.
We have been living on Jeff’s severance and our savings for almost 4 ½ months. This has been difficult financially, but honestly, in some ways the timing was ideal because both Jeff and I have been there with Nico through all of his treatment thus far.
Life has a way of working things out, and reminding us that we have very little control over anything. As the weeks of unemployment turned into months, Jeff and I decided that it would be smarter to move into my mother’s house in Arizona to extend the life of our savings. We gave notice to our landlord, and literally two weeks before we were set to move two things happened back to back. Jeff got a job offer here in Salt Lake City and my mother called to inform us that while making home improvements in anticipation of our arrival, her roofer discovered that she had a serious mold problem. Fungal infections are incredibly dangerous to anyone with a suppressed immune system, so clearly Arizona was off the table.
We had two weeks to find a new place since our old house was already rented out. In addition to the time crunch, Jeff was starting a new job and Nico was getting the Erwinia injections every Monday, Wednesday and Friday. It got stressful. We found a gorgeous condo (no yard work – yay!) that was over our budget, but we decided that we needed to do something for ourselves even if that was not the financially responsible decision. So Jeff cashed out some of his retirement so that we did not have to stress about where we were going to be living anymore.
We will officially be insured again very soon and get to wave bye-bye to the $1800 COBRA payment, so that will help too. We are actually very grateful that COBRA was an option because Nico’s medical bills over the last four months exceed two hundred and fifty thousand dollars.
Synopsis – lost job, lost benefits, child is diagnosed with leukemia (all in 2 weeks). It looks like we jumped the first two hurdles though and we are running full force at number three and ready to take flight.
This road is hard. And even though I knew in theory that Jeff’s job loss and the huge expenditure of money were adding to my stress, all I can ever really worry about now is my son’s life. We would gladly hand over everything we own and put down our own lives for that little boy. He is what matters most.
So for now, back to unpacking . . .
PS – If you only read the updates on Caring Bridge, you might want to check out the post from yesterday on WarriorNico.com. I posted some pictures from Nico’s school that are too cute for words.
RSS Feed