So yesterday I spent from 4:30 to 6:30 at a birthday party with Julia that had large inflatable jumping things. She jumped – I chatted with my friends. All very suburban mom-ish.
I got home – took Nathan’s temperature. It was way too hot. Talked to the doctor, packed a bag, strapped kid in car and went to the hospital for the night.
Did the hospital cancer mom thing all night. Same old, same old.
Now – I am back home. The baby is napping and the big kids are playing outside while I drink coffee and blog. Back to being a suburban mom again.
When I got home – Luke remarked at how unremarkable a night in the hospital is. It feels the same as any other routine activity in our household.
It makes me wonder how I will fit back into life when I am done being a cancer mom.
I now have a child-size wheelchair residing in the back of my van. I am trying to think of it as one of the many strollers we own.
We do now own a jogging stroller that Nathan can ride in but it isn’t practical for crowded places as it is huge and has a fixed front wheel.
I think I have actually convinced him to use it, though his initial reaction to it was that there was no way he would ride in it. We go to a large church and for him to get where he is going and it to not take forever and tire him out I think he should hitch a ride. There is also the pain he has been having and the limp.
So – I hate it – but that is where we are at.
My fellow parents of school-aged kids know of the multitude of end of school activities that take place this time of year. Both Nathan and Julia have had several such activities and their respective schools in the last week or so and Nathan has some more next week.
Trying to juggle these with an 18 month old is hard enough. Add in a sick kid who is going to school/or not/or coming home whenever/ to the schedule plus his doctor’s appointments and you have the craziness.
It will be a relief when school is out next week.
I should mention that Luke has offered to help with all the juggling – but I feel like if I can make it work, even if complicated, I should so that he can work. After this fall – he doesn’t exactly have time off to spare.
I had one of those things happen to me that I have had dreams about – now that it has come true – perhaps I won’t have it anymore.
Yesterday, Julia was to go to a tea with a friend and later, Nathan was to go to an Air Force baseball game with Luke. Julia’s friend was sick and so she didn’t get to go to the tea. So, we decided Julia should go with Luke and Nathan to the game.
As they pulled away, Lauren cried and cried at the door. I yelled for Luke to stop and I decided that Lauren and I should go too. I hurried and locked up the house and grabbed Lauren’s shoes and things and hopped in the van. As we approached the Air Force Academy – I looked down. I was barefoot.
A little searching of the van and I managed to produce a pair of Julia’s neon green socks out of her backpack. So -on went the socks and we carried on from there. It was hot and the bleachers were metal – so my feet got a little bit toasted and I am sure some people thought I was crazy. We had a great time and it was no big deal.
I have a feeling I will be getting some flack from Luke for a while for this one.
As for the picture – before the game they had four men parachute down to the field. It was extremely cool.
I attend a Mother’s Day tea in Nathan’s classroom today. I was happy to go – but it has left me mostly sad.
First the funny (or not – I can’t decide)
On a laminated placement.
My mom is…..Nice
My mom likes….Me
My mom knows….what I am like
My mom says…we can’t do something until we clean
My mom can…..cook really nice
My mom wishes…me and my sister can clean up our own mess
My mom loves….me
My mom is…..nice
So – I am feeling a little like an ogre – but one who loves her son – and can cook.
These events are just excruciating to attend. All these healthy kids and their moms. I am just so jealous that they will probably get to attend many more of these events in their child’s life and this may (probably is?) be the last one I ever will attend with Nathan.
I held it together until a mom from from Nathan’s Kindergarten class stopped me in the hall to say Hi and I started crying and had to apologize and leave.
I try so hard to be in the day, to be happy in the moment – but I am just not succeeding much today. It doesn’t help that Nathan came home from school a while later. He is limping, has a low-grade fever and took a nap. Crossing my fingers someone else “gets it” so it is not the cancer.
So – I sit at the clinic with Nathan (on newly discovered wireless connection – yay!) and I haven’t spoken with the doctor. Nathan is here for 6+ hours for medications today. Last time we were here he had some labs done. While these labs are not cancer markers as such, they can be used to track the cancer’s progress in a case like Nathan’s. He has drawn these labs before each round of chemo and they have been creeping up. Every time the doctor tells me the results it makes me feel like crap. It is bad news with no other real purpose. So – I think I just don’t want to know this time. Nathan is feeling good. That is what matters at this point. We can’t save his life. These bad lab results won’t lead us to switch up Nathan’s chemo. There is nothing else he can possibly do, treatment-wise. So – it is of no value to me to see it on paper that his cancer is getting worse when I look at him and he is doing about the same.
We have not scanned him for similar reasons. There is no useful information to be gained from scanning right now. Should Nathan start to have troubling symptoms or pain then we will scan him to see if he can have palliative radiation.
So – as I write this I think I won’t inquire about the labs. They will only make me feel ill and change nothing. Nathan is happily building with legos next to me after doing some independent reading. He is fine today. That is all I need to know right now.
Springtime in the Rockies.
I read a lot of blogs/website of other families with kids with neuroblastoma.
Once in a while I run across one written by the parent but as if it is the child speaking.
I have to stop reading immediately. Why do people think they have the right to even assume to represent what their child is thinking, no matter what the age. Besides, they are usually cloyingly sweet with lots of pet names of the other members of the family and words like “ouchies” and “Boo-boos”.
Not my thing.