No seriously, this was supposed to be Day -1. My’isha was supposed to start the Vorinostat and get her NG placed. It was SUPPOSED to be…

The same cold that tried to keep us in the hospital is pushing her treatment back a week at least because of the need for anesthesia during this treatment. They don’t want to have a re-occurrence of last week or compromise her immune system while her body is already trying to fight off a cold virus. At this point, we just have to wait for the cold to runs its course. This is difficult for 2 reasons:

A) My’isha already has a hard time clearing any sort of respiratory illness. We think this is likely due to her chromosome situation.

B) Sudafed and other cold medicines that normally would come into play to help control symptoms actually inhibit the neuroblastoma cells from taking the MIBG treatment. How Inconvenient, right?

So, the plan now, is to… well… if you follow our blogs, you probably have an idea…

We WAIT! I also do my best to keep her lungs moving and her airways clear. I will be on Pinterest looking for ideas. They also prescribed a nasal spray steroid to help with lung efficiency and of course, her inhaler and breathing treatments through the week. We will be back in Denver Thursday to check in and try to get this treatment thing going before the disease is able to continue spreading and worsen our chances of getting through this as easily as we are hoping for and anticipated.

This is the unpredictable world of childhood and any other cancer. It just really doesn’t seem fair. I mean, no one else in the house is sick. My boys all go to school and none of them have any symptoms at all. She hasn’t been to school in weeks because of her arm and everything else, so she couldn’t have gotten sick from another child. We had a blizzard roll through here. We didn’t leave the house most days, but we did have to get out in the cold. So I guess if it was the weather, then it was fate, and I can’t blame myself. I keep her bundled, but the truck doesn’t have heat, so that had to have been how she got her cold.

It really sucks, because we really want to get this all over with. It is a silly delay to have, but the procedure wouldn’t be worth the risk given her respiratory history.

To end on a good note, what we thought was going to be a hard week financially, actually began with some much needed donations. It really warmed my heart when my brother was able to contribute to our gas situation and some long time friends made an awesome donation to her entertainment during transit and while we WAIT! We also had a family member of her father make the FIRST contribution to Miracles 4 My’isha’s PayPal account. Which will be so helpful as well and very much appreciated. The outpour of offers to help have been so heartfelt and very reassuring to us. It is a weight lifted  of the many that we are feeling at the time.

We really appreciate all of the thoughts and prayers and support and donations. You can imagine how much it helps us get through the days knowing that we will be able to put gas in the car to get there and feed our family still. Please share this story, even if you have a cancer warrior close to you, and need to raise funds for them. I hope this story will enlighten folks that this life we live is very unpredictable. We can do our best to anticipate needs and events, but the truth is that cancer has its own programming to function regardless of its environment or other cells. Our lives, our schedules, our finances, our families, our children, our vehicles, school, work, EVERYTHING depends on what these cells do next.

We are hoping to get going next week with treatment, if not, we will have to redo all testing including scans before being able to proceed with treatment. We may have to consider a treatment for in the mean time in between time, but only My’isha’s little body will tell.

 

Advertisements