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.

　
　

Short, but sweet.

First off...Sierra's MRI results are in....with no changes!!!

Secondly, thanks for all the prayers after yesterday's meltdown of a blog post.

Appreciate all of the continued prayers!

Scanxiety.

 

 

It's that time again. Sierra is due for her MRI, and it will be done tomorrow morning. (06/29/2015) Even though her symptoms have spaced out and become more manageable, anxiety is through the roof tonight.

Please join us in praying with and for her for no regrowth.  We need a clear scan. Her neurosurgeon had to move her appointment almost a month out. I'm hoping we can get the results through the pediatrician's office before then....otherwise it's going to be a long.......anxious month.

 

I haven't posted much the past month. Mostly because I was incredibly busy with my class and just the day to day stuff with six kids, doctor appointments, etc. But also, because I haven't been in a great place and simply could not find the words to write. Being transparent isn't something I'm great at, and I'll probably edit this a hundred times before the night is over....but for now, here's a bit of our truth, for what it's worth. Someone made a comment today about how strong we are, and how they're not sure how they could handle things the way we are. Truth is, we're handling it as best as we can, but we're also struggling and we're not always as strong as we 'appear' or as strong as we like to pretend to be. We have our moments of weakness. This particular week has been incredibly difficult, and has brought the worst out of Ken and I, as far as patience and strength go. I think we've put so much pressure onto ourselves to be 'strong' instead of allowing moments of weakness to come and giving it a few minutes to pass.  We're working on finding our grounding again, and trying to remember that we don't have to be 'strong' all the time, and that these moments of weakness can be okay. The weight of it all has just caught up. Not just Sierra's diagnoses, but everything else as well--good and bad. Emotions are raw. Fears are real. Numbness has worn off, anxiety is unmanageable at times. Not always. But sometimes. We've lived our worst nightmare when we lost Arianna. Now another one of our children is fighting the battle of her life, and at times it feels impossible and excruciatingly crushing and paralyzing and leaves us hanging by a frayed thread. We're having a hard time sitting still. On her good days, it feels so important to make the most of EVERY. SINGLE. MINUTE. To make memories, to not waste a second. Sitting still equals running thoughts, and running thoughts equals facing reality, facing our uncertain future, facing the pain, facing the lack of control, which isn't a fun place to be. And at the same time, it's also on her good days, that I seem to crumble the most. It's on her good days, I guess I feel like I can let my guard down and feel the feelings, since I don't have to be so strong on those days. It's been a battle, and sometimes one I'm not sure we're strong enough to win. This is just hard stuff! But with the consistent support of soooooo many people and leaning on our faith--as much as we can, we're making it, even when it feels impossible. So thank you to all of you for your constant support, for your ongoing prayers, for your calls, texts and messages. We might not respond to all or many of them, but please know, we do appreciate it more than anything, and that we're not ignoring you.

 

On another note, the other kids are doing pretty good. Summer is here, and our days often consist of the lake, library, park days, play dates, bowling, swimming, kayaking and hiking, concerts in the park, jumping off waterfalls, massive thunderstorms and playing in the rain. Summer camps will be starting soon, and they will probably be going to both grief camp as well as church camp. Shortly after that, soccer season starts. We went camping last weekend in Yosemite, which was a great time for everyone. Bryce turns 5 on Wednesday, and I'm not quite sure how that happened. My high energy, smart, creative, adorable, strong and expert comedian with a heart bigger than he can contain, keeping us on our toes child is turning 5. No one he meets is a stranger, and he loves giving random hugs to everyone. Happy Birthday, sweet boy.

 

Sharing some recent pictures to end this.  Again, please pray for these scans tomorrow, and pray for our anxiety levels. Thanks!

 

 

 

 

 

 

 



June update.

Hi all. Hope everyone is doing well.

People have been asking about the blog, and any new updates. I was taking a pretty extensive and time consuming class, and have stepped away from the blog and social media while taking it. Plus, there haven't been any significant updates, so there wasn't much to post about.

Sierra has okay days and not so okay days. Her headaches and dizziness seem to be spacing out some. She still gets some numbness, and now has been experiencing some sleep paralysis....where she wakes up, can hear everyone talking, but is unable to move her body. More than likely not a big deal as far as risks or anything like that go, but it is frightening for her when she experiences it. She had another EEG yesterday, which came back as normal with no seizures. Next one will be in 3 months. She's due for another MRI in a couple weeks, and then will head back to Oakland to see the neurosurgeon and oncologist. She was put on a heart monitor for a month, to monitor her rapid heart rate and murmur to make sure that the tachycardia was fixing itself, which it has been. We returned the monitor this past week. The med changes that we made last month seem to be working well for her, so we're going to stay with these current meds and doses for now. She's done with homeschool, and has been taking a break from physical therapy, but will be going back, as her right side is being affected some, again.

Last month, we got word that she 'qualified' for Make A Wish. Definitely bittersweet. We're beyond thankful she gets to have a wish granted. But we're sad that she meets these 'qualifications'. She is meeting with the "Wish Makers" tonight, and this process will be started. Looking at it as a huge blessing. But wish she had her health instead.

Other than that, we're just trying to keep living and making the most of each day, in the midst of it all. Trying to adjust to this new reality, and trying to keep an ounce of normalcy for our other kids as well. The other kids are doing well, and enjoying summer break.

Posting some pictures from the past few weeks. Enjoy.

Last day of preschool ever, for Bryce. With his fabulous teachers.

Hanging out while Sierra was having her EEG done.

At the carnival.

Child after my own heart. Future photographer. :)

Fishing at Lake Tahoe

Phoenix, kayaking Tahoe

Kai'Lani enjoying the arctic cold water. :)

Bryce and his gator.

Zion, making sand angels.

Makenley loves the water!

 

Makenley, and a couple of her body guards.

Talent and patience.

Little beauty.

 

Mothers Day

 

Zion and Bryce admiring Bryce's catch at the fishing derby.

Silly boys.

 

Brothers. <3

 

 

Riding the carousel during the Carson Valley Days parade

Sierra and Miss Lake Tahoe

At Yogurt Beach

Phoenix teaching Makenley how to play soccer