Novalee was diagnosed with immune thrombocytopenia or ITP at the end of January. It’s a disorder where the body gets confused and starts to destroy its own platelets, often triggered by a viral illness. Nova’s case is particularly severe, and she was estimated down to 140-440 platelets total in her whole body on January 28th. (Healthy humans normally have 150,000 or more)

Without enough platelets, she is considered critically ill because her blood can’t clot very well. This means that nearly every little bump and tap hurts terribly and bruises deep. But it also means that she is at much higher risk for internal bleeding, brain injury, and large hematomas (bad bruises). Until she is well, she cannot attend her daycare or do any activities that could put her at risk for injuries. Nova is smart, strong, active, and also almost 3 years old, so strongly disagrees with these new rules and regulations of her autonomy. She still looks and acts much like her usual self, but she is very ill. We can tell because she is very grumpy (probably from the pain of the bruises), tired, and her appetite is generally low.

Now, two weeks after our initial ER visit, she is at 11-12k, but we have a long road ahead to get back up to normal levels of 150k platelets. The doctors estimate 3-12 months for a full recovery. Because she can’t go to daycare and needs constant 1:1 attention to not sustain an injury, our family had to make sudden and major adjustments to our workloads. I currently have 6 weeks unpaid leave at my job, and my husband is applying for FMLA to be present, but will still have to work through this crisis to carry the health insurance for us.

We don’t know how long it will take for Nova to get well, and I will likely remain off work until then. If you feel gifting monetary support is how you’d like to help us on this journey, I invite you to do so here.

Love and thanks to everyone who brought us dinner, listened to us cry on the phone or in meetings, and generally helped lift us up so far. Thank you in advance for all of you who support us going forward.

With love,

Nova and Family