Monday, August 20, 2012

it's been awhile {update}

I know it's been quite awhile since my last update, things have been a little crazy around here. I haven't even looked back to see what I put on my last blog post... so I'm just going to wing it and do a brief summary. (As a side note, all of the following pictures were taken on my phone, so they're not the best shots... I don't have much time for editing photos these days.) Just to forewarn you there is a lot of medical information in this post, it's not graphic just wanted to give fair warning...

In January my dad was diagnosed with autoimmune hepatitis (where your body attacks it's own organ as if it were foreign.) Then 10 days after my dad was released from the hospital my mom was driving and her hand fell off the steering wheel (the first symptom she had). A few weeks later she was diagnosed with glioblastoma multiforme, a very aggressive cancerous brain tumor. Both of my parents moved into my house, and my mom had brain surgery in March followed by radiation and chemotherapy to help slow the growth down for a time. My dad had been struggling through the daily life of someone with liver disease. He has six liters drained off his abdomen every 7-9 days, has lost most of his muscle mass and a host of other things. We began working with the University of Washington (UW) to get him on the transplant list. After three months of testing, meetings and procedures he was accepted onto the list. However at the last appointment they found a spot that appears to be the beginnings of liver cancer (something people with any type of liver cirrhosis have an increased risk of getting). So we've had lots of appointments for both mom and dad from Seattle to Everett to up here near Camano Island.

Fast forward to July 13th. Mom had her first seizure. We've known all along that she would eventually have seizures, and eventually came on July 13. Her fist seizure lasted 10 minutes, the second was 45 minutes and the third seizure was finally brought down after three hours in the ER.


Mom spent the next 6 days in a coma from the seizure. Lots of tests followed while we waited to find out if she'd wake up... which she did! During my mom's stay at the hospital, we spent two nights in the ER with dad who had a raging headache that wouldn't quite. They did several tests both nights and sent us home with no answers. After a two week stay in the hospital, we got her all ready to transfer to inpatient rehab close to home.



An hour before mom discharged to rehab, we got a call that dad needed to come to the hospital right away. One of the ER tests came back positive for cryptococcal spinal meningitis. So my sister took over mom's discharge from the 8th floor and I zipped downstairs to admit dad onto the 5th floor. They began to treat him with IV meds for the meningitis which ended up sending him into a close call with kidney failure. His team of doctors grew to five at the hospital, one at the UW and his regular GI specialist. They were able to switch the meningitis medicine and narrowly avoid dialysis for his 16 day stay.





With everyone in a treatment facility and reasonably stable, my sister took the reins for a couple of weeks and we got a last minute opportunity for a little respite. We decided to take a road trip. Planning a road trip in two days at the 11th hour turned out to be a little tricky, but we made it happen... We visited Lake Shasta Caverns and Shasta Dam, Burney Falls, Lassen Volcanic National Park, Virginia City, The American Chesterton Society's annual conference, Carmel by the Sea, Fort Bragg and the Coastal Redwoods.

Lake Shasta Caverns

Burney Falls
(I'd love to go back and camp here, it's beautiful!)

Stan & Torrey
Virginia City,NV

Emma & Stan
Virginia City, NV

Virginia City, NV

Carmel Mission Basilica
Carmel, CA

Building St. Peter's Basilica in the sand in Carmel-by-the-Sea, CA

Emma grew an inch in the two weeks we were gone, and is now taller than me.

The Golden Gate Bridge


A slice of redwood
Fort Bragg, CA


Glass Beach
Fort Bragg, CA

This was one of the coolest things ever!
More than a foot deep of tumbled sea glass. Looked like little jewels all over the beach.



 The Drive Through Tree - and it's alive!

Fort Bragg, CA


We arrived home just in time for mom to be discharged from the hospital. Emma decided to share her hair with Grum for a little while. Mom was able to walk again after her time in rehab, and we transitioned into life with the adjustments in mobility.


On Thursday evening mom had a couple more seizures and we took another trip to the ER to stop the cycle. We went home with yet more seizure meds, and an appointment for another MRI the following day.


On Saturday dad ended up back in the hospital with cellulitis (an infection) on his foot. With thin skin on swollen feet and a weak immune system he's susceptible to all things like this. He's still in the hospital, and they're working on a treatment plan so he can come back home in the next few days. We had to postpone his checkup at the UW till next week.

mom's tumor

Today we had appointments with oncology and the neurosurgeon to go over mom's treatment plan and MRI results. The tumor has grown some in the last couple of months, we're going to continue with another round of chemo and check back with another MRI in a month to see where things stand. and nervous not knowing when the next one will show up.


In between appointments for mom, I was able to wheel her across the street to the hospital to visit dad for a little while. Their 39th anniversary is on Saturday, and I'm praying they'll be able to be together...


Thank you for your continued prayers.
Sorry for the long absence and post.


Erica Hettwer said...

Praying for you and your family, sweetie!

joscelyne cutchens said...

I think about you and your family several times a day and pray for you all daily. xoxox

Cami said...

Continuing to pray.
Looks like the time away with S. and the girls was a good respite.
Love you sweet friend.

Leonie said...

Hoping you can continue to find strength to help you through this terrible time, it seems unbelievable for so much to be happening at the one time to your family, I am so amazed by the beautiful smiles you are all continuing to find. God bless you all Noel.

jknapp00 said...

I add my prayers to the list. What a privilege to be able to be so close to your parents in their time of need and to be able to care for them and advocate for them.

Michelle said...

Oh Noel, I think about you and your parents all of the time. I am glad you were able to get a little time away and so glad that the Navy is letting Stan be home.

You, your whole family are in my thoughts. Hugs!

Betty said...

Sending you H(((((((HUGS))))))))) and PRAYERS from Minnesota.

Anonymous said...

Sending lots of prayers and hugs across the pond in Australia Noel. Your poor parents must be so frustrated to be sick at the same time & unable to care for one another. Thank goodness you and your family are close. Keep strong :)

Linda said...

Not a week goes by that I dont think of you and your family. Sending you prayers.

Anonymous said...

I am sending you courage your way. I have been through something similar with my dad last year so I know how hard this is, both mentally and physically. You have a great support system, and love all around. Sending you positive thoughts and courage. Sylvie

Marfa said...

God bless you and your family...I LOVE that Emma shared her hair by leaning over your sweet!!! Enjoy the time you have together. It certainly makes you value life more when you see how quickly it can change.

Anonymous said...

Hugs & prayers for you & your family. You have been through so much.

Anonymous said...

Anonymous..... Well gee, I hardly know what to say. After reading this recent post, tears are streaming down my face. I don't even know you but nonetheless can feel your pain. I said a prayer for you and hope God heals your Mom & Dad, and makes live easier for you! You must be a very strong family to endure and get through all that has been laid upon you. God Bless you today and everyday!

Erika @ Scrapbook Obsession Blog said...

Noel, I'm so so sorry for all your parents are going through. You probably don't remember this but years ago on CKMB I posted about having a dream with you and your dad in it. I liked him :) You're a wonderful daughter. I'm glad your family was able to take your trip. That sea glass beach looks amazing!
{{{Hugs}}} and prayers!

scrapdoc said...

Bless you and your family. Sending lots of prayers.

Anonymous said...

i'm very happy for your parents to have such wonderful children and grandchildren!
may the Lord be close to you all!


Charlene said...

Prayers to you and your parents. It has to be so hard with both of them sick at the same time, plus a family to care for! Hugs! You were in my backyard....I live in Redding and have been to all those places alot loL!! Im glad you were able to take time to regenerate!

Anonymous said...

I am so sorry for everything your family has suffered. I do not know you but I am affected by your story and I will pray that you find closure with the death of your parents.


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