The Bauer Family

It seems the universe wanted to remind our family how quickly things can change. Yesterday, we went into the clinic for a routine

chemo appointment. Where the total time

should have been about 2 hours with travel to and from included in that. After 4 hours of being at the clinic passed, and the labs needing to be “redone” several times, mom and dad’s spidey senses were tingling. Something is wrong.

It was at that time the doctor came in and said he had some bad news. Olivia’s blood glucose level

was severely high, and it was due to the steroids that she is on, that she needs to be on. Her blood glucose level was at 638, normal range is 100-200. He recommended that she be admitted to the hospital overnight, while they bring her down slowly.

Upon admission to the hospital, Olivia’s glucose levels were at 400, which is still very high. Throughout the night, the nurses would come in every three hours to check her levels, and administer insulin until her glucose level were back to normal. By 7am, her glucose level was only at 61, so the nurse woke Olivia and made her slam a juice box. So far she’s had pokes on every single one of her finger tips on both hands, but her glucose levels have returned to normal. We met with the endocrinologist for plan of action, Olivia will be sent home with a blood glucose meter, we will need to check her glucose before each meal, limit her intake on simple carbohydrates, and sugary beverages. We are unclear with what the plan would be when she has to start steroids back up again, considering this is the culprit for Olivia’s glucose levels being so high. We hope to have a plan of action very soon, but for now, Olivia is doing ok. Although she is very tired from all the commotion and waking up for finger pokes last night.

Thank you everyone, for all of your well wishes and kind and supportive messages! We will keep you all posted as we know more.

Signing off for now.

Love,

Olivia bandaid hands

Today is day 174 of since diagnosis, things that were unusual to us, are now status quo. Olivia is in week number 2 of her next phase, called “Delayed intensification”, which is 8 weeks long. She is on similar meds that she was on in her first month. That means her side effects will be the same, she is tired and moody, and the constant struggle between nausea and vomiting from the chemo, but then the hunger from the steroids takes a toll. We have made friends with a lot of the hospital staff, and we are hoping that someday we can invite them for a meal to say thank you. Olivia has found a way to cope with every new side effect that is thrown at her. She has an indomitable spirit. That is not to say that she has not had her share of “rainy” days, days that no 12-year-old should have to deal with. Taking 12 pills a day, and hearing her vomit, knowing that what little precious calories she has been able to keep down, are not as much as she should be getting is harder than any other part of her treatment. Hospital stays are bad, and hard on the whole family, but dealing with the aftermath of the chemo treatments is a whole other story. As parents, Jess and I agreed that when she is having her good days, we should embrace them and do things that we can’t do when her counts are low, and we have to hunker down. When she is having low days, we try to be patient, and understand that is the medication and the situation, not Olivia. Otherwise we try to keep family life as normal as you can during a global pandemic. We go on walks, have dinners on the deck, drive through Culver's for dessert. The hardest part for the budding social butterfly that is at Olivia’s core, is that she cannot see her friends and family as much as she would like.

Olivia was able to participate in a program called “Camp IN, with Camp Quality”. This is normally a week away from home camp for k-12 kids who have had a challenging medical condition, but mostly cancer. Some of the hospital staff volunteered to put together indoor activities for the kids and then we did a drive through pick up where they gave the kids a backpack full of goodies for them to do inside. We were surprised to see that Olivia’s Oncologist and primary doctor was one of the volunteers! They were giving away bags of popcorn, snow cones, and cotton candy. They each got a s’mores kit and a campfire night light. They also put on zoom classes such as, a Karate class, dance class, poetry reading, and a talent show. This was a much-needed break to the monotony of treatment. Her last intense treatment was 4 separate hospitalizations, 2 weeks apart for 3 nights/4 days each. During her stay she was able to make a friend with another young lady who was also fighting cancer. They were able to meet up between treatments and play uno, and even celebrate her friend’s birthday. For Olivia, it meant the world to know there was another girl out there fighting the same battles. They exchanged contact information, and hope to be lifelong friends.

As we try to ease Olivia’s battles, Jess and I are dealing with the responsibilities of keeping our household running while juggling a toddler, who is asserting her dominance as the ruler of clan Bauer, trying to manage the necessary steps to protect ourselves from the pandemic, and also afford the growing medical costs that continue to pour in. The initial round of fundraising was very helpful, and Jess and I are grateful for the support that was given. We’ve engaged with our social worker to help with some of the costs, but we don’t mind admitting that we are struggling to keep our normal bills from falling behind, while still paying the bills that are responsible for literally saving our daughters life. One of the new programs the hospital has helped us set up is the Spare Key, “Help me Bounce” program. 100% of the donations go to the family, the organization keeps NONE. I have included a link to them below, and if you feel so inclined, please share the link in your circles, and keep us in your thoughts. We have a long road ahead, but we have an amazing group of friends and family. Thank you all!!