Sierra's Make A Wish Trip

Make A Wish will be granting Sierra's Wish, most likely in January. She had the opportunity to design a shirt for the trip, and also do a little fundraising with the shirts to raise a little bit of money to use on the trip. Make A Wish pays for most things, but not everything.

If anyone would like to help support her in this....
the link is:
https://www.booster.com/sierras-make-a-wish?utm_source=fb_share_tablet

The shirts can be bought in all different sizes....infants to adults 5XL.
If you're local, shipping will be free. If you're not local, shipping is $5.00

Update.

Quite a few people have asked for an update or wondering why I haven't been posting. For those who follow our updates only by the blog, I'm sorry for the absence.

First of all....it's Fall. Fall brings new school schedules, soccer, soccer, new work schedules, soccer and oh....more soccer. We kind of live and breath soccer during the September-October months. Soccer season is coming to a close, so our lives should slow down a bit. With four kids playing, and a husband who either coaches or refs--it's a couple months of insanity. But the kids really enjoy it, so it makes it all worth it.

Sierra, as far as we know, is still stable. She hasn't been feeling great the past couple days, but overall, she's been doing pretty well. Once we treated her last sinus infection, the headaches spaced out quite a bit, so that's been nice. There have been a couple weeks where she did so well, that life almost felt normal. She's due for her next MRI, and she was supposed to have an EEG last week, but I completely spaced it, and we missed it. Have to reschedule that.

The rest of the kids are doing well. Keeping us busy.

Ken and I are hanging in there, I think. I'm not one who is comfortable being transparent, especially in a public post, but I think we could use the prayers. To make a long story short without all the details, life and the stress is catching up to us, and our physical and emotional health are taking a beating. Anyway, we've both ended up in the ER at separate times, for what seems to be stress related symptoms. And today, Ken found out he has to have surgery on his wrist that he broke in December, because it's not healing properly. It's supposed to be a pretty simple and quick procedure, but some extra prayers won't hurt anything. His surgery is on the 20th.

I will post an update when Sierra's MRI is done, and I reschedule the EEG, or if there is any other post worthy news that comes along.

Thank you for all the continued prayers. Much love.

 

 

Cincinnati opinion.

We received a call from the doctors in Cincinnati.

They reviewed all of Sierra's records, imaging and slides. As for the brain cancer, they are all in agreement that it is completely a grade 2 diffuse astrocytoma, with no portions appearing to be a higher grade. So, treatment for now remains the same.....taking the wait and watch approach. The lesion on her hypothalamus is not showing characteristics of being another astrocytoma, which is also good news. They suggest her still having frequent MRIs, and monitoring things very, very closely. He suggests finding another neurologist who specializes in pediatric migraines and neuro oncology.

The kidney: First MRI that was done in March, which discovered the lesion on her kidney, showed there to be blood flow, which appeared to be another tumor. Ultrasound showed it to be a 'simple cyst'. Further studies and more specialized pathology from Cincinnati are now saying there is blood and it is a 'complex cyst'. Which raises a bit more concern.
Recommending another ultrasound and possibly a ct scan within the next couple weeks to check for growth. And then, follow up ultrasounds every three months if there is no growth.

We are feeling relieved that we have more doctors who are agreeing on the wait and watch approach when it comes to the cancer.

Thanks for all the continued prayers. Please continue to pray for her. Not out of the woods, but thankful that right now she is stable. Very thankful.

Summer, soccer, MRI results.

Hi all, hope everyone is doing well.

It's the end of summer, start of fall season. The busiest time of year for our family. School started today, soccer started last week. Five kiddos in school now. Sierra is in 8th, Kai'Lani in 5th, Phoenix in 4th, Zion in 1st, and Bryce in kindergarten. Sierra went to school for the first time since her surgery today, and did well. We're not going to push her, and the school is making some accommodations for her schedule, but we're beyond thankful that she is strong enough to go back as much as she can. And incredibly thankful for a school district who is being flexible with her and have made it abundantly clear that her health and recovery is top concern.
Soccer season started two weeks ago. We have four playing this year. Our lives get a bit chaotic from now till October.

Last time I posted, Phoenix had the issue with his blood sugar. I'm happy to say that he has no more issues, and has been healthy since. Sierra was in the hospital about a week and a half ago, for some exaggerated symptoms along with some new ones. An MRI was done last week, and the results came back today. Thankfully, no changes in tumor cells. She has a sinus infection, so we're hoping that's the cause of her increased headaches. Antibiotics start tomorrow....hoping for a difference.

Other than that, that's about it. Received an email from the Drs. in Cincinnati today saying they received all her records, and they are being reviewed this week by the neuro oncologists, neuro radiologists, and neurosurgeon teams.

Here are some recent pics of the kids.

Zion, 1st grade.



Bryce, Kindergarten

Phoenix, 4th grade

Sierra, 8th grade

Kai'Lani, 5th grade

Phoenix's 9th Birthday!

First day of school. Pau-Wa-Lu Panther spirit!

Our big kids helping Bryce on the first day. Waiting for his first bus ride. <3

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.