If you are taking care of Kezia, she needs help with the following
Getting her food and cooking for her. (Food is important nausea management. Her taste changes on a day by day, sometimes hour by hour pace. This may include running to the market down the road and picking up something specific.)
Get to the bathroom
Put clothes on, take them off
Get in and out of bed/chairs
Go up and down stairs
Pick her legs and feet up – water retention makes her legs and feet very heavy
Do in bed exercises and PT
Drive her to treatments
Make sure she
Eats food/Doesn’t over eat
Exercises/doesn’t over do things
Is allowed to cry
Gets out of bed/gets rest
** When you are here caretaking Kezia you need to keep your eyes and ears open for her only. She has very specific needs and needs constant care. She can not be alone or unmonitored and can not be alone with Lochlan.
When you are taking care of him and something happens and you feel it’s a hospital visit, or you are not sure, I always err on the side of caution.
911 first, me second.
He gets out of bed between 630 -7am (this is when someone needs to arrive)
Naptime is between 2-4 pm (he needs to nap every day if possible – if he won’t sleep, its quiet time for an hour)
Bedtime is 8pm – Take him up at 7:30pm to potty and read 3 books
** Dietary restrictions He cannot eat the following and there are no exceptions
No hot dogs of any kind
No Dairy (if it is cooked into a baked good – bread, etc. – it is ok)
No Red Meat
No hard candy – this includes lollypops
No excessive fried foods
On Rare occasions he can have (not to be used to bribe unless it’s a necessary thing)
A cookie (not 2 – he can have 1 cookie)
An orange cookie (Chinese fortune cookie – he loves those things)
Breakfast: after he gets up
Lunch is Noon
Dinner is 6pm
Snack after nap
Usually fresh fruit/Inner peas or something like that
Lochlan needs to play hard – outside weather permitting – every day. He is a ball of energy and that needs to come out so he can manage his stress. There are also scheduled play dates that we may ask him to be taken to.
Our family is in survival mode. This is one of the reasons we need 2 people here at all times from 7 or 8 am to 9pm. And we need someone here helping for at least 48 hours after a chemo day. For those who are here at the house either taking care of Kezia or Lochlan, you will need to know the potential side effects and potential drug reactions so you know what to look for. I have the drug sheet with side effects that you will need to review before coming. All caretakers of Kezia need to read this and use it as a reference. You need to know what to look for when you are here.
One of the other reasons we need 2 people right now is because Mike needs to focus on other things – most importantly our business so that it doesn’t go under - to make sure our family makes it through our survival mode.
A local group has set up a meal train for us. Anyone can participate. We will extend it out longer as we feel the need. Thank you to all who have been cooking for us. It is a huge help. If you have any questions about what to bring or what we need, please feel free to email, text or message me.
Of course, financial help is always appreciated so so very much. We want to make sure that CareAline can keep helping as many people as possible, so we appreciate any help that others share with us so that our personal finances don't force us to shut down the company and send Mike out of the house to work (and complicate matters even more).
If you know anyone in the media who may be able to share our story with a wider audience, please feel free to use the following press release to send to them when you ask. Thank You
Hosting a Fundraiser:
I have heard a few people mention that they would be interested in hosting a fundraiser. If you are interested, please email me and let me know - firstname.lastname@example.org
Thank you so much for all of your help!