Welcome to our Fun House – pt. 2

Day to day, we’re making it through, though sometimes it has been difficult. Will’s vacation days at work were all used up earlier in the year, so the last 6 months I have found myself often sitting in pediatric oncology or a doctors office waiting for blood work and appointments with a 2 year-old, an infant and a breast pump by myself. Thankfully the last couple times we have gone I have been able to find a loving mom-in-law or best friend to accompany me so its not quite so stressful, but we have a lot of appointments and for a while we were seeing multiple doctors weekly. Understandably, it has been hard to find someone available to help every time.

We have been on Daniel’s treatment, anakinra (brand name Kineret), for a year now and he seems to be functioning and developing normally with it in his system. So long as we give him this painful injection every night before bed, this injection allows him to live a somewhat normal life, which is something we are so thankful and blessed to have.

The way that anakinra works is like this: each of us has a protein in our bodies that our cells to turn off the systems that are fighting off illness in our bodies. When our bodies are healthy, these cells get to take a break. Daniel’s body doesn’t make this protein so his cells don’t know how to turn off, causing major inflammation. Anakinra supplies the protein that our bodies naturally make that Daniel lacks. Giving him this medication is helping his body to function like a normal person’s.

I have recently joined a group of other families who are living with Autoinflammatory diseases– some families have a diagnosis while others are in the same group as us that live with the unknown. It’s interesting to connect with others who live with this illness, either for themselves or with a child who has it. Up until now, Daniel has really not been able to communicate a lot of what he feels on a daily basis, but the more I hear from these other families the more I realize how strong his level of pain tolerance is. People who suffer from Autoinflammatory disorders can live with incredible levels of pain: their bones ache; for some it’s hard to even get up in the morning; when they have flares (periods of fever), they are unable to function and it often feels like there bodies are in fact burning from the inside out, despite looking totally normal! Some of these disorders have short flares of a week or so on a monthly basis and some like in Daniel’s case have constant fevers. Daniel’s injection keeps him from being in a constant state of fever. Had we not received that treatment and insurance to cover the treatment everyday, he could have potentially lived with a constant, unending fever for the last year.

So it was hard for me to understand the injection until recently. I, like most of us, have endured needles and I think, especially as a child, they are no fun! Luckily they often only last a second and then we get a lollypop for being brave. Apparently, not the case with this injection. One girl who shares about her experiences describes the injection like this, “the shots burn like a wasp sting for a lot longer than I was expecting.” The needles aren’t small, and they hurt: it has to be kept cold so you feel it more than most injections, even before the sting, burning, and itching. But, for now, they have been working.

(Also a brief update, Daniel’s injection coverage is still being fully covered through our insurance. The reevaluation was approved for another extended period of time–Praise God.)

Daniel has also been able to stay relatively healthy by avoiding daycare when children are ill, disinfecting and sanitizing when out and about, staying on top of not sharing cutlery, dishes or food with others, constant handwashing, and staying on top of housekeeping. Despite all of that, Daniel has still had a few run-ins with the flu, hand foot and mouth disease, as well as multiple bacterial and viral infections. He has a tendency to catch things quicker than most and these are harder for Daniel to handle because he is at a higher risk of developing a fever and causing a flare, which could kickstart his blood disorder. Any rash we see sparks fear and conversations back and forth with doctors, and any fever means at least one trip to the hospital, if not more.

Matthew 6:34 has become a verse that we live out daily. It says, “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.” Not one of us knows what our tomorrow will look like. We can only cherish today, and this is what we have learned to do with our very precious boy.

To be completely honest, and to bare my soul with you all, we are scared and we are worried. We don’t know if we have the funds or strength to be able to handle what the future might hold. Whether that means, a trip to this US to the National Institute of Health for further research and testing, or more long hospital stays, or whether it means we have already been through our worst – there is fear in the unknown.

The last year has been hard, we have shed a lot of tears. We have gained some debt and we have spent countless hours on our knees. We wouldn’t be where we are without our friends and family and our faith, but we have also had 400 more days of waking up to the world’s most beautiful smile, to a laugh that lights up our life, and we have cherished every day since the day the doctors said we could go home.

So, what room do we face next in our crazy fun house of life? I don’t know, and the unknown is daunting. But I will take Will’s hand, and Gwen’s, and Daniel’s and we will face it together. We know we will get through. If you would like to help us, to walk through this journey with us, take our hands, and say a prayer. We can face tomorrow together, when it comes.