Neurosurgeon appointment

Sierra had her appointment with the neurosurgeon today. Her incision is healing nicely.

We went over the latest MRI results.

That big, white bright spot on the two bottom pictures is where the tumor was. There are still some small tumor cells visible, but right now, they are stable.

There are a couple little tumors also noted, but they appear to be benign and unrelated to the glioma. One of the tumors is the original pituitary tumor. The second was just a little further back in hypothalamus. They will just continue to monitor them along with all the other monitoring.

The symptoms she's been experiencing are likely to be seizures and/or a migraine disorder. All things the neurologist should be able to tell us. Seizures are one of the main things we were warned about after surgery.

For now, the next steps are to see the urologist on Friday, the neurologist on May 4th, the neuro oncologist and neurosurgery team in Oakland. We are to continue the frequent MRI's, add anti seizure meds, and possibly migraine meds if needed, continued physical, speech and occupational therapies.

On Saturday, our friends and several people from the community hosted an amazing fundraiser event. We were overwhelmed by the amount of love that was shown to Sierra and our family. This community is truly amazing.

Heading into another MRI

Watching a band of wild horses.

 

All the people/businesses in the community who helped with the fundraiser.



 

 

Ken made his annual lei to release to Arianna for the day she died. 

 

Busy week.

This has been a pretty hard week for Sierra. A lot of bad headaches, some dizziness, leg numbness, a lot of bloody noses. Yesterday and today have been a little better.

Monday she has physical therapy. We'll also get an appointment date with the neurologist that day. Three studies will be done, plus the evaluation by the doctor, so we're expected to be there most the day. Oncology and neurosurgery are working to get her scheduled back in Oakland as well. Urology appointment is on the 17th. Occupational and speech therapy still need to be worked into the schedule.

Tomorrow is April 5. And Easter. In 2008, Easter was the one holiday we had with our sweet Arianna. We spent it in the NICU, and brought her little Easter dress to the unit. (Which was a doll dress that came with the girls Easter dresses). She came home from the hospital the next day, and passed away on the 5th of April that year. This year, they fall on the same day. Seven years have gone by since we experienced the worst day of our lives, 7 years we've been living without our child. This year, we're trying to maneuver our way through a new cancer diagnoses in another one of our children, and feeling the sting and memories of Ari's death that seem to rise to new levels around this time of year, and the days are feeling pretty paralyzing at times. It just feels to be too much at times. But we are determined, and somehow, not with our own strength, will get through it like we always have. Just pray for us!

 

Precious Arianna in her Easter dress. 2008

On another note, last week we decided to get away for a bit, and went to California. We took a whale watching tour, and seen dozens of dolphins and about 12 humpback whales. The experience was amazing, and all the kids had smiles on their faces almost the entire time. Including Sierra. The next day we spent on the beach in San Francisco while the kids played in the sand, chased the waves, found sand dollars, crabs and those little sand crabs that the boys love to catch. It was a great get away, and so, so needed!

Sierra also did another interview for the Record Courier. She was so brave sitting with the reporter and telling her story, her fears, her pain and her goals. I let her lead the conversation and talk about whatever she was comfortable sharing, and she did amazing.

My doula classes are supposed to start on Monday. I'm going to try and attend this semester, but I'm worried about being able to keep up....both with time and the emotional part.

For the locals: One of Sierra's best friend's family is hosting a fundraiser at The Moose and Squirrel and The Grill Next Door here in Gardnerville. It's on the 11th at 2:00, and will be raffles, bbq dinner, and more. We will be there, and would love to have you out.

Lots going on. Please just keep praying for Sierra, for the kids, for Ken and I to have the strength and endurance to keep doing what we need to do. For us to be patient with each other, with the kids, with the medical staff. For better days for Sierra. For less pain, less headaches. For continued healing, and for clean scans.

Thanks for all the love, prayers and support.

 

Sierra's most recent interview with the Record Courier

Some of Makenley's one year pictures.....

quick update.

Oncology. Neurology. Urology. Neurosurgery. Physical therapy. Speech therapy. Occupational therapy. MRI. Ultrasound. Cancer. Headaches. Dizziness. Pain. Meds. Incisions.

All words that seem to have suddenly become a part of our day to day conversations over the past three weeks. We are still trying to wrap our minds around it all, and I haven't been up to writing or talking much. Not that there's much to update for now, anyway.

On Sierra's good days, we all seem to have better days and can focus elsewhere for a bit. On her bad days, we all seem to feel the sting, and our mood and emotions sit with her pain. Like a heavy wet blanket.

The last two days have been decent days for her.  A mild headache here and there, but manageable. She tells us her pain level from 1-4, with 4 being the worst, and it's been around a 2. On Monday, it was a 4. She started physical therapy today. It was mostly just measurements, strength testing, balance, etc. She's still showing quite a bit of weakness in her right side...but something they think will get better as she goes through the therapy.

The urologists office and I have been playing phone tag for the last four days. This is to check on her kidney.

Tomorrow we will schedule an appointment with neuro-oncology. They no longer come to Reno, so these appointments will be in Oakland.

She was supposed to see the neurosurgeon on Monday, in Reno, but on the way up there, the office called and said the doctors flight had been cancelled. Haven't been able to get a hold of them to reschedule, but will try and schedule both neurosurgery and oncology together to cut down on a trip.

Homeschool is going well for her. She likes her teacher, and is able to work at a pace she can handle for now.

Other than that, we're all hanging in there. On an emotional rollercoaster ride of a lifetime.

Thanks for the continued prayers. Please continue to pray for her. And pray for our other kids who are trying to grasp all that is going on.

Love to everyone.

We got the results of the biopsy this morning.

It is a grade 2 glioma.

Not exactly what we were hoping for, but not as bad as it could be.

It's not benign, but it doesn't appear to be too aggressive, either. For now, since it's at a 2, they are going to hold off on chemotherapy and/or radiation...hoping the surgery is all that will be needed as far as treatment goes. They will continue to monitor it very closely. The not so great part of this, is that surgery alone rarely gets all the tumor cells, and regrowth is common, which then becomes a higher grade, requiring further, more aggressive treatment.

So....the plan for now remains. MRI's frequently, monitoring of any symptoms, physical, occupational and speech therapy. Doctors also want her to see a neurologist. We see the surgeon on Monday, and will hopefully have some of this lined up.

With that being said....please continue to keep her in your prayers. Pray that the tumor cells do not regrow or mutate into a higher grade. Pray for her headaches and dizziness that she's still getting daily. And pray for the rest of us as we maneuver our way through hard and unfamiliar territory. Thanks.  

Here is a link that describes the gliomas.

http://www.uptodate.com/contents/primary-low-grade-glioma-in-adults-beyond-the-basics

Again, thank you all for the continued prayers and help, meals,  and support. Sorry for the lack of updates. I was hoping to have more to update by now, but unfortunately, the pathology results aren't in yet. I called yesterday and was told it would be 7-10 business days. It was almost Tuesday by the time they got it, so we're officially at day 6 now. Ugh. So, we wait. And wait. And impatiently and anxiously wait. The fear of the unknown is painfully crushing at times.

What we do know, though, is that doctor thinks it is a low grade glioma. We're not sure what that means as far as treatment goes, and no one will talk to us about it till we get actual results in.

Sierra is doing pretty well, considering. Still a lot of headaches and dizziness...but nothing that isn't expected for this period of her recovery.

Tomorrow, she starts tutoring/home school. Tomorrow, Ken is also going back to work on very modified/light duty, after being off since December for his arm.

The rest of us are hanging in there as best we can. Sometimes we're okay, other times, we're feeling pretty weak and depleted.

Will update when we hear some results.

The day she was discharged.

On the way home.

Our cat, Princess, doesn't like leaving her side, now.

Sierra's post op appointment and Makenley's 1 year appointment.

She was able to see some school friends.

With her 6th grade teacher, Mrs. Mello

2nd grade teacher, Mrs. Menicucci

With 3rd/5th grade teacher, Ms. Cummins

With principal and staff from her elementary school.

With Tori. :)

The first time they seen each other since before surgery. <3