Oh my, it’s been awhile friends and family. I fell off the face of the earth and so many people have reached out to make sure our family was ok. I am so thankful for you and please know you filled my heart with the well wishes and kind words I received via text messages, private messages, voicemails, and emails! Unfortunately I do not have a great excuse for myself, but the good news is that everything is stable. All things considered, everything is actually pretty much perfect.
First and foremost, Makena. Oh my sweet and amazing girl. Words will never be able to explain my admiration for her. I’m in complete awe of everything that she is. It has been exactly 2 years on the button since she was first diagnosed with a very serious auto-inflammatory disease (systemic juvenile idiopathic arthritis or SJIA, AKA Still’s Disease) and she continues to surprise us with her resilience and strength.
Despite responding well to her initial treatment option, the daily injections were getting to be extremely difficult to navigate around. Between hanging out with her friends, sleep overs, traveling, and of course a rigorous volleyball schedule we found ourselves playing a game of Tetris with scheduling her shots. Last summer we decided to switch biologics to a monthly treatment. The “unexpected” transition time was so stressful and scary. However, her body handled the switch well and her monthly injections are working out wonderful for us. We are going on month eight now with Ilaris and loving the freedom of not being tied down to the house at specific times EVERYDAY!
About five months ago Makena did have another serious health scare though. Lymph nodes in her head and neck began to swell out of control. At one point she must have had at least 10-12 from her collarbone to the base of her skull. So began seeing all of her regular specialists and new specialists. It was all too similar to the onset of her disease. Lots of anxiety and were shed. So many questions, so many what if’s.
- infectious disease
- head and neck surgery
- CT scan
- lab work
The bulk of all of this happened around the holidays. Instead of coming up with Christmas lists and celebrating November and December properly, everything was overshadowed by doctors appointments, hospitals, needles, and testing. Everything she went through came back inconclusive and her team of doctors wanted her to have a biopsy done to remove a lymph node for testing, but we just couldn’t bring ourselves to do it at the time.
We agreed that if the lymph nodes changed, got larger, became more painful, etc. we would move forward with surgery. Her doctors thought this was reasonable and for now everything is on stand by. Luckily some of her nodes have begun to get smaller and her blood work is still stable! We are hoping that the swollen lymph nodes are “reactive” to either her disease or treatment.
In sports news, Makena began playing beach volleyball last summer and despite a late start in the season, she KILLED it. Absolutely killed her tournaments. Ten in total played and this rock star came in TOP 3 EIGHT times. 1st, 2nd, or 3rd in EACH of those tournaments to be exact. Beach season was over in late September, but I am so excited for her to get back on the sand very very soon!
Our 2018-2019 indoor season also started a few months ago and is off to an AMAZING start. This is a very very special team. Even with practices 3x a week, plus tournaments, plus private lessons I can’t get enough. I could watch them every single day and never get bored. Amazing new coach (who we should be seeing a LOT more of in the coming years), wonderful families, and the bond these girls already have is unreal. We are now moving into our “mandatory tournaments” for SCVA and this team is officially in GOLD DIVISION I!
Another HUGE piece of news for our family… we moved Makena over to independent study/homeschooling for the remainder of 8th grade! Oh my how we LOVE it. We are fortunate that her school has an independent study program so the transition could not have been easier for us. This has been absolutely fantastic for our family. Makena follows the same curriculum she was already doing, plus we were able to a few extra classes.
Homeschooling in 2019 is so vastly different than when Joe and I grew up. Although we joke around (a lot) with Makena that she now needs to wear a cape and carry around a special wand like Harry Potter because she is now homeschooled, we could not be happier with our decision. These days so many more families are choosing to homeschool for so many reasons. It is becoming more and more mainstream and as time passes, I truly believe more kids will turn to options like this. I honestly cannot think of ANY downsides or negatives (for our family).
Why We Love Home Schooling:
- early morning alarms are obsolete
- there is no driving to/from school, no pick up lines, or any traffic
- no wasted “class” time
- we don’t have to pack a lunch everyday
- the freedom to travel anytime we want
- specialized curriculum and tailored learning
- ability to spend time on more difficult concepts or go ahead anytime
- LOTS more time together as a family
- on days where Makena may not feel 100% or shows signs of disease, she still doesn’t miss “school”
- safer environment (Joe’s personal favorite)
- avoiding typical adolescent issues, peer pressure, school bullying, etc.
- less chance of catching any illness (important with a kid who is immuno-comprimised due to her treatment)
- extra volleyball training anytime we want
As much as we love homeschooling as our learning option for 8th grade, Makena will be attending a more traditional high school next year. She is actually already registered and my little nerd has her classes all picked out. The class she was most excited about? Synthetic Biology. My little nerd. If things pan out as she hopes, we may just be calling our little girl Dr. Makena Thomas! She will be specializing in pediatric rheumatology so she can help kiddos just like her with serious life threatening diseases like her own)!
Oh the pride we have. It is vast and immense.
Last bit of family stuff…
We went to Maui:
Blake turns 20:
Oh Blake. My first born. My how you’ve grown. Blake should be wrapping up community college in a few months, then has no idea what he will do or where he will go. As much as I would have wanted him to take a certain path, I also realize that path is not for everyone. I decided long ago that as long as my kids were happy, kind, and good humans that would be enough for me.
Ultimately Blake is an adult now and I just hope that the foundation has been laid and seeds were planted properly. He will figure it out eventually. In his own time, he will get it together and discover what makes HIM happy. Oh how he makes me laugh so hard my stomach hurts, continues to surprise me, grows, matures, and frustrates me all at the same time!
And last but not least… a little about me.
Honestly not much to report. My own health has been fairly stable. I have my good days and my not so good days. All things considered, I’m doing FAR better better than most who deal with everything I deal with on a daily basis. Let’s see. An incurable/untreatable spinal disease that triggered fibromyalgia, a foot that has been broken and has needed to be repaired for a few years, teetering autoimmunity, and more. Yeah, I’d say I’m doing pretty damn good health wise when you look at the deck of cards I have to play with!
There were a handful of reasons I fell off the face of the earth, but one of the main things is that I have just been SO busy. When my health took a nosedive and I had to restructure my photography business, food photography/styling and recipe development literally fell into my lap. I have been blessed to have transitioned my work so easily and effortlessly. It has kept me plenty busy the past two years and I absolutely LOVE what I do. How can anyone get tired of all things food?
I make my own schedule, I only take on projects I want to, I have complete creative freedom (always), I am able to help support the family financially from the comfort of my own kitchen and home studio, and I work for really REALLY amazing companies. I am blessed in so many ways.
My life was forever changed when my spinal disease was diagnosed, but I also feel like my life fell into place as a result. It is a different life, but an amazing one. I still have my fair share of painful days, bouts of crying, and feeling frustrated that my body does not do what I want it to a lot of the time. There is so much “good” that it puts all of the “bad” to the background.