quick update.

Quick update and prayer request.

After having a decent month, Sierra is now back to having more bad moments than good. Her debilitating headaches have come back strong, and the numbness comes back frequently as well. We see the neurosurgeon on Monday again, and we are in the process of getting a second opinion as well. A neuro oncologist in Cincinnati has requested all her records. We like our doctors, but would feel more comfortable if another specialist seen her pathology reports and MRI slides and was in agreement on the plan of treatment. If nothing else, to calm our minds a bit....

On Tuesday, Phoenix came home from a friends house, incredibly sick. He's always had a difficult time regulating his blood sugar levels, but we always thought it was low sugar. He's a little guy, very busy and active, but isn't a huge eater. Usually, we can give him some juice or something like that, and he recovers within a few minutes. It's usually a quick and easy fix. This time, nothing was working. He was throwing up anything we gave him, couldn't stay awake, was confused, shaking, sweaty, had very rapid breathing. Took him in, expecting them to give him something for his nausea, some juice, and we'd be home with him feeling back to normal. Turns out this time, he wasn't Hypoglycemic, but his blood sugar was dangerously high. His urine showed that he was dumping both glucose and ketones. He was sent to the hospital for more labs, but nothing came back too abnormal. Doctor is thinking type 1 diabetes. Yesterday, his levels were back down to a more normal level, so we're not sure. We're going to watch his levels carefully.

Please keep them both in your prayers. For Sierra's migraines and numbness. For wisdom for the doctors receiving her records. For her to remain stable. For Phoenix to remain healthy. I know diabetes is manageable....but it's just ONE more thing right now. Not what we need, and definitely wouldn't wish him to have to experience it.

Thanks for all the prayers and continued support. Much love to everyone.

Being in touch.

I've had a couple people get on my case lately for not calling or being in touch more. One person in our family, whom I talked with almost daily from the day the 'mass' was discovered, to the day we got the pathology reports back, (haven't heard from them since the day Sierra got her diagnosis) said that they gave up, because we haven't actually called, but would text, and they hate to text. Ouch.

So, I'm just going to put this out there before anyone else wants to let us know how they feel about us not being in touch more or being more available. Not to be rude, but to put it out there in one place. I just don't want anyone else getting upset or wondering why we're not talking to them or are avoiding them because we don't call. That's not the case, at all.

We have five school age kids at home, and a very busy toddler. We have one child with cancer, who we never know how her days or moments are going to be. On her good days, we're busy, trying to make the most of each day. On her bad days, our focus changes. Thankfully, there have been more good days, lately. We have five kids in martial arts now. We have swimming, Sierra and I both work and volunteer at church, I'm running my photography business, in school myself. We have a mess load of doctors appointments. Somewhere in there, I still have to find time to be a wife, and very rarely, do I have time for some self care, let alone, time for phone calls or going out with friends. Most days right now, I feel like I'm hanging on by a thread.

I update the blog when I can. Usually, it's when there is a new family update . I rarely answer my phone, and I make phone calls even less. I will respond to emails or texts when I can.

People need to understand that we are in survival mode right now. We don't have the energy, time or emotional capacity to make individual phone calls to everyone. It doesn't mean that we don't appreciate when you reach out to us, and it doesn't mean that we're not talking to you, or are avoiding you. We eventually hear your messages, and we appreciate your calls, even if we don't answer or return your call right away. We respond to text messages and emails when we can, simply because we can start and stop as needed, and we don't have to worry about falling apart at the mere 'how are you doing?' question. Which makes a phone call uncomforatable for both ends. We are okay, usually. But sometimes emotions are raw.

So, please be patient with us. If you really need a phone call back, let us know. But don't be rude about it, cause it's not going to happen that way. That is about as far from helpful as you can be. We need prayers and patience as we maneuver our way to finding a new normal. We will get there, but for now, we're not there yet.

And for the thousands of others who have been patient and understanding and supportive....thank you. Your unconditional love, support and prayers have helped carry us through some pretty hard moments.

Love to all of you.