Tobias Killian

Tobias has been doing good, he’s had a couple of off days with nausea and body pain but overall, so much better, we go back in eight days for another lumbar puncture and his monthly IV meds. He is getting stronger each day and eating so much, he is also starting to talk so much more. I am grateful for each day I get to see my kids running around the house laughing and playing.

We took Tobias out (somewhere that wasn’t a medical visit) briefly for the first time in a year, one of the organizations that have been helping us with bills, food, gas, and dog food hosted an event at a Fire Station. We’ve decided to try to participate in events from these organizations if Tobias can, he has been sheltered for far too long and it’s time for him to start experiencing life. It was in an open space, so we felt very comfortable with it. He was so excited! Thank you, Cancer Alliance of Help & Hope.

I have been so emotional lately, having trouble sleeping and sporadic crying, I couldn’t understand why because being in Maintenance should be a relief, right? Yesterday I heard another mom talk about the fear and stress of being in Maintenance, especially the fear of relapse, because relapse typically happens within two years of the first initial treatment (active treatment), it can happen if even one bad cell remains in the body and the cells become resistant to the medication. Now that we don’t see the doctor as frequently, I find myself dissecting any complaint or symptom; if he sweats while I’m nursing him, I panic because sweating while sleeping was one of the initial symptoms. I am trying to look forward and stay positive but saying everything is going to be okay is not the same as truly believing it, it’s hard. I’m trying my best to cultivate normalcy and routine, but I find myself waiting for another shoe to drop. It’s not that I have lost hope but that I must be prepared to react. I’ve concluded that to some degree I have trauma from all of this, and I don’t know how to navigate that, although I am trying.

When Tobias was diagnosed, I changed a lot about our lifestyle, I did a deep dive researching leukemia and childhood cancers. It gave me clarity on changes I felt I had to make, even though we ate a pretty healthy diet as we are vegan I realized I could be doing more so I cut out all unnatural food colors, have immensely cut back on processed foods and have begun making and preserving a lot of our food, and will continue to replace store-bought items with my own fresh preserved items; it is very time-consuming but worth it being able to use simple healthy ingredients and cutting out all the chemicals and preservatives. I still have a long way to go but I am making it happen, our food is being poisoned and unfortunately, our governments do not care so it is up to us to make better choices for our and our family’s health.

Another decision I made and while it may be controversial is that I am no longer vaccinating my children, the research I have found linking leukemia and other cancers and other diseases to certain vaccines from accredited institutions is scary, and it makes me so angry to know this information is not being shared with parents so that they could have the choice to make the best decision for their families. If I had read any of the articles prior, I would have never accepted putting that into my children’s bodies. Vaccines are not the same as when I was a child. I am not against anyone that wants to vaccinate their children, prior to this all my children had been vaccinated except for a few vaccines I did not support. I had Tobias on a staggered vaccine schedule where he only received no more than two vaccines at once but my husband and I both noticed he changed physically becoming slower and more tired after his last set of vaccines, and then soon after became sick. Not to mention that Tobias had never been sick and the only times he ever felt ill was after a vaccine. My husband is the opposite of me, and I live a very holistic reality, he is conventional, but we are together in this realization and decision.

Now, trying to look forward when you’ve spent the last year just focusing on each day can be a challenge. The reality is that I need to find a way to get back to work, the option to reopen my business is not sustainable. I don’t even know how I managed to do it all and keep up with my family life for so long, it’s apparent it was taking its toll on me mentally. Caring for Tobias and Sophie means I have to work from home, Sophie is 100% dependent on me, she is not potty trained, doesn’t feed or dress herself, and has no danger awareness; she may be 14 but developmentally she is in the baby-toddler stage. I also plan on homeschooling Tobias and Sophie starting next year, Tristan is stating he also wants to be homeschooled and they are my priority.

For now, the goal is to keep Tobias as healthy and happy as possible while creating some normalcy in our everyday life and find sometime to figure out where I want to grow from here.