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

May.

 

 

For the past seven years, we've been supporting and raising awareness of the pink and blue ribbon in October, in honor of Arianna and all babies who were ripped from their families arms from SIDs, stillbirth, etc.

 

Starting this year, we are supporting and raising awareness for the grey ribbon for brain tumor/brain cancer awareness month in May, obviously in honor of Sierra. No more ribbons!

 

Sierra continues to trudge through the okay moments and the awful moments of this recovery. We hold on tightly to the okay moments, but they seem to disappear before our eyes after such a short time. She is struggling, on every level. Physically, emotionally, mentally, this is hell. Our other kids are struggling emotionally. Ken and I are at a loss. We listen. We cry with them. We hurt with them. We encourage them all to share. But the sadness of watching their sisters physical and emotional health deteriorate is impossible to ignore. As parents, we would die or kill to protect our babies. They are our world, our main priority over anything else in this world. And yet, reality is, no matter what we do or how hard we try, what we do right..... we can't make this pain go away. We can't keep them blindfolded to what is happening around them. We can't shield them from the heartache and fear.....and that reality is beyond crushing.

 

So, I don't know what the next step is, to be honest. She had her EEG this morning, and an appointment with the neurologist. Thankfully, no seizure activity was found. They will recheck in 2 weeks. No evident seizure activity is great. No answers on what to do with her symptoms, is overwhelming. Wish there was a quick fix. For now, we're going to change up her medications. She was in the hospital last night for a bloody nose and vomiting of blood so severe that it made our bathroom look like a crime scene. There were no injuries or dryness in her nose, so the only thing they could think of was maybe the combination of meds that she's on, as some can act as blood thinners.

 

She sees a cardiologist next week for her heart rate and murmur. And now, an ear, nose and throat doctor is getting on board. We're getting a counselor on board. Looking for a support group for kids going through this. Keeping up with the frequent MRIs, regular kidney ultrasounds, regular appointments with every other doctor. It's a lot, and I don't know how to always keep up. As Sierra said the other day, 'this just sucks!'.

 

Pray for us. As a family. We all need some kind of supernatural strength to get through these days.......they feel impossible.

 

 

 

 

 



quick update

Hi all, hope everyone is doing well. Haven't had a chance to post a recent update, so here's the latest.

Sierra had her urology appointment last week, and then had an ultrasound a few days later. The original MRI that was done in Oakland showed there was blood flowing through the lesion on her kidney, which meant another tumor. Ultrasound was sketchy, so they weren't sure what it was exactly. The follow up ultrasound showed it to be a cyst. Urologist says she's too young to be having kidney cysts, but for now, we're thankful that it's not another tumor. We'll deal with any issues that come from having cysts this young later.

Yesterday, she had an oncology and neurosurgery appointment in Oakland. The oncology appointment went well and was a positive experience, considering. Dr. Hastings agrees, that for now, we should continue watching those left over tumor cells, and hold off on chemo and radiation. She feels that enough of the tumor was removed that it could be a long while before there are changes or regrowth. She also said that Sierra didn't have a particular gene make up that predisposes these tumors to grow and mutate rapidly. Neurosurgery just checked her incision...all is well there.

Last week was hell for Sierra. She was not doing well, at all. Debilitating headaches and dizziness that left her in bed most of the day...every day.
The last three days have been a little better...shorter episodes of dizziness and pain, and she's able to get up and function. So thankful for these okay moments.

Thank you for the continued prayers and support. They help carry us through some of these darkest moments.

Tough day.

The hospital mailed the last MRI disk to us, which came today.

We've known for a few weeks now that Sierra's tumor was cancerous. I've written about it. I've talked about it. I've researched it. But I don't think it fully hit till we read the printed out report that was in the disk envelope. Maybe we were in denial...I don't know.

MALIGNANT NEOPLASM OF THE BRAIN. ASTROCYTOMA.

I know this probably seems weird, but reading this felt like strong kicks to the gut and heart as we read those words. Our walls, our strength, our hope, our very foundation suddenly feel shaken and unsteady, crushed under the weight of those first five words. I know this info doesn't change the outlook, or change the course of treatment, or change anything other than the fact that suddenly this new reality feels very, overwhelmingly real. Where we have felt strength and confidence, there is much more fear and uncertainty.

I hate cancer. I hate it. I hate it. I HATE it. In all it's forms. I especially hate the one that is taking up residence in my daughter.

Sierra is still struggling quite a bit. Yesterday was awful for her. Dizziness that left her stumbling around, holding onto the walls and furniture just to get across the room. Her face has been numb for the past week. Overall, the majority of the days have been a challenge lately. The moments where she feels 'okay', have been far and few in between. We try and remember that she's only five weeks out of major brain surgery. But it's hard to see her struggle, and to be helpless to make it better.

More meds were added to her list today to hopefully help with the dizziness, and possible seizures.

Tomorrow (Friday) she sees the urologist. Tomorrow she has physical therapy as well. Next Friday, we go back to Oakland to see the oncologist and Neurosurgeon and his crew.

Please continue to pray for her. Pray for the dizziness, numbness, and headaches to lessen, or go away. Pray that the lesion on her kidney has either gone away or hasn't changed at tomorrows appointment. Pray for her strength, her physical, emotional and mental health. And pray for our other babies, who are struggling with it all. Pray for Ken and I as we soak in this reality....that even though we've known, and this paper doesn't change a thing, that we can refocus, and continue to make the right decisions regarding Sierra and her care as best as we can.

Thanks.