The “F” Word

We have an “F” word in our house–to us it’s probably worse than the real “F” word because it means having one of “those” days.

The F word to us is “fever”. When we hear or see or come in contact with fever it’s one of those situations where we high tail it and run, get home and lysol everything and start praying or kiss Daniel every few minutes just to see if he has one coming on.

If Daniel has a fever day and it gets above 99 degrees, we start what has now become a ritual: we email Daniel’s doctor and as soon as there is a clinic day that is available we bring Daniel in for lab work. If his numbers looks fine, we are ok to go home; if not, we immediately start steroids. If there isn’t a clinic day open and Daniel has stopped eating or drinking, we immediately go to emergency and wait for one of Daniel’s doctors to contact us while the nurses place him on IVs and start steroids and fluids.

Fever in Autoinflammatory is common: for some children, they have fever for a week every month. Daniel’s would be daily if not for the Anakinra, so when it comes while on treatment, we try and be very cautious. Since being a part of the Autoinflammatory alliance community, we have been connected with families who also face a similar struggle on a daily basis and having a few people to connect with that can relate to the additional stress and pain that Daniel struggles through has had some positive results. However, this week has been especially difficult as we have had one family that we connect with lose their son suddenly as a result of his illness. He had been healthy and happy for a long time on treatment and then rapidly got sick and developed internal bleeding that they were unable to find the source of. There were so many doctors to consult and no diagnosis that this family ran out of time and their son passed away.

When things have been so positive, hearing this makes you reflect on every second you have with your child, and makes you want to hold on to him and never let go. I guess I can’t help but feel the need for a diagnosis, that having an answer is the key to protecting Daniel, but there is no certainty of that.

We are anticipating an upcoming trip  to Sick Kids in Toronto on May 20th, where we will be meeting with the Clinical Genetics team and Daniel’s team of Rheumatologists to discuss any particular findings in the last set of genetic testing and we are praying that maybe they have discovered some clue to the puzzle that is Daniel.

We have been overwhelmed with an outpouring of love in the last couple of months; friends and family have come alongside us to help in an incredible financial way that gives us strength and hope for our future that we are not walking alone in this. Daniel has touched the lives of many people and we hope that he can continue to do so for a very long time. We cannot thank everyone who has given enough for all the love you have shown.

A very special thank you to our friends who created a GoFundMe account on behalf of Daniel–this beautiful gesture has helped in a real tangible way to lift some of the burden that comes as a result of this illness and the journey for a diagnosis.

Thank you, Everyone!

With all our hearts,
Daniel and the Kinchleas

2 replies on “The “F” Word”

Hi Kinchleas,

My name is Lauren and I live just north of Toronto. I stumbled onto your website after googling “when anakinra doesn’t work for auto inflammatory of unknown cause”. I have read a few of your blogs and I can completely relate to what you have written as I have been experiencing a lot of what it sounds like Daniel has experienced. You mentioned you have found support groups and I am just wondering if you can share the names/web addresses of those as I would like to learn more about them. As well, I would love to connect in a more private forum to see if perhaps we can learn more from each other’s experiences.

I look forward to hearing from you.

All the best and sending positive thoughts to Daniel!

Lauren

My heart goes to Daniel, and your family. My grandson, Luke, 2 years old this week, was recently diagnosed to have SAVI. We are grateful for finally having an answer as to what has been afflicting him. I am fearful his future holds. We love the little guy so very much.

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