Those first days home from the hospital, grandma and grandpa had baby sleep by their room and took care of her during the night.  Nolan caught this pretty cute picture of grandpa quieting baby when he walked out of our room one night.

They are the best!  

The picture on post #11 explains well. . 

There isn't a great way to post photos on this site- it only allows one per update, and 5 to the main 'gallery'.  Swipe the main front page photo to see the gallery.  

Thought I'd add a couple additional posts, to be able to share some more pictures!

Just want to send a note of many thanks to all who have remembered us.  The messages, prayers and support we’ve received have definitely helped carry us through this time!  

Things are going fairly well.  Pain is better, I’ve been able to sleep and had more energy. . But have realized I still need my breaks and quiet time.  I’ve been so thankful my oldest daughter was willing to give up her job at the beginning of December . . She’s been doing online school and its been a LIFEsaver to have her home!  We’ve also had lovely friends coming to help as needed for appointments (babysitting or driving me, as I don’t trust myself driving quite yet!) since Nolan’s back to work mostly full-time now.  

Last week I had a physical therapy appointment.  I scored 89% on a balance assessment-  that is how comfortable I am being in different settings/situations, as far as my balance goes.  The physical test I scored 23/30, but the therapist said she pushed me a little harder because she could see I was capable.  Neither of us feel I need to continue these appointments, but will do at least one follow-up visit just to see how things are improving as I work on some exercises at home.  

My appointment with the geneticist is coming up on the 20th of March.  I am sort of anxious to see how that goes.  

At the end of April we will go to Seattle for a couple days for my 3-month post-op, MRI, hearing and vision appts.  

Not too much else to update right now!  We promised to share some pictures . . Im having a hard time sorting through them- I hope it’s not too much!   

Thank you again from our entire family.  We can’t say enough how much we appreciate the love and support shown to all of us.  

3/4/25

Back in January, at Rachel's pre-op appointment a couple weeks before surgery, she had a bunch of blood work done. As we walked the halls of the hospital from one appointment to the next, she began to recieve messages on her MyChart app with the results of the blood work. A new result popped up for her blood type. She opened the message to read: B Positive. Looking over her shoulder at the message I gave her a squeeze and said: "Hey, its B Positive, we can B Positive. At least its not O Negative". That brightened our spirits for a moment that day after hearing some matter of fact details about the upcoming surgery and seeing results for her recent CT scan. Occasionally since then I've tried to remind her of that message when it seems that's all we can do. Today, we are trying to B Positive. 

Over the past several days, Rachel has worried that her right eye has been getting "worse" in that it seemed to be looking more inward rather than straight ahead. Yesterday, she reached out to the eye clinic at UW about getting in sooner than her scheduled appointment at the end of April. They happened to have a cancelation this morning so we ran up there for that. Following a vision check and eye pressure test from the doctors assistant, we met with a neuro-ophthalmologist who took a series of measurements with prisms to see how far out of alignment her eyes were. She matched these with the measurements that were taken bedside a few days after surgery. The numbers weren't too much different and because the bedside measurements were taken outside of the eye clinic they aren't super reliable. So, they can't determine if her eye is getting worse yet but they have a better baseline to compare future measurements to. We learned today that because the nerve controlling her eye muscle is not functioning, there really isn't anything that we can do to make it better or worse. It will just have to heal on its own and she can patch her eye in whatever manner brings the most comfort.  We've kept the eye appointment in late April since she will be having an MRI done then anyway and it will be a good opportunity for them to check the alignment again for improvement.

 Wanting to see improvement ourselves, I had attempted to test her double vision shortly after we got home from surgery. The Surgeon suggested I could check it every 2 weeks so a few weeks later I checked it again. The second time I realized my testing procedure was flawed and I was slighty embarrassed and disappointed because I had high hopes to see improvement and looked forward to the moral booster. After pondering it again several nights later in the sauna, I came up with a new method. So, about a week ago I tested her again with the new method. We will wait a few weeks and see if there are any changes. 

We had heard after surgery that her eye would get better within 6 months..today from the specialist we were told that they would hope to see "some improvement" within 6 months but some cases take closer to a year and some don't ever fully heal. There are some options for treatment if it doesnt fully heal but we didnt discuss them too deeply yet. This vision issue wasn't discussed before surgery and came as a surprise. As the surgery pain decreases and the acceptance of hearing loss comes, the vision struggle remains the most difficult aside from the other tumors.  

We have to leave these things in God's hands. There is nothing we can do to help it...maybe we can just try to trust and B Positive. 

Thank you all for continuing to remember us. 

Nolan 

It’s hard to believe a month has gone by since Rachel’s surgery. I’ve wanted to write an update for the past few weeks but life has been busy here and it just hasn’t gotten done. Looking back, we are encouraged by how much improvement she’s made, yet looking ahead there is still uncertainty with the side effects of this surgery and unknowns of the other tumors. So, its best if we try take things one day at a time and deal with what’s in front of us currently. Some days are good and somedays more challenging but overall she has come a long way.

We were warmly welcomed home from the hospital by our family who had decorated the house with balloons and ribbon. Re-uniting with our 3.5 month old baby after a week away was extra special. In our first days at home, Rachel spent a lot of time resting. I teased her at one point that she was starting to act like me because she didn’t say much most of the time and every time she sat down she would fall asleep! She still had some pretty strong pain medications and her mobility was a bit restricted so she could only take short walks around the house with someone at her side. Sleeping comfortably with her head elevated was a bit challenging these first weeks. Some nights it took a bit of fussing with pillows, ice packs and blankets to get her to relax enough to fall asleep. 

Rachel’s parents stayed with us for a couple weeks after we were home and they were a big help with the kids and keeping the house running so I could focus on Rachel’s care. Her brother Nate and his wife Lori also came to help for a few days shortly after we came home. It seemed to energize Rachel a bit to have company around, but we realized she needed breaks from the extra visiting and stimulation.

Following the first weekend home, we were in Seattle for her first post-op visit. There, the physician’s assistant removed the 10 inches of sutures and 6 staples from her head and also reviewed some other side effects of surgery and medications. She had been dealing with thrush after surgery so she got a medication to help with that. Aside from that, things seemed to be healing as expected.

A couple days after the stitches were removed, we noticed some drainage from one spot on her incision which caused a lot of worry. It’s been nice to be able to communicate electronically with her care team when these situations have come up. We were able to send a few pictures of the drainage along with a description and they answered fairly quickly that being it was clear and didn’t have a foul odor it was okay. She has experienced other fluid buildup and swelling since then but we’ve been reassured that this condition (called pseudomeningocele) comes and goes following surgery. In reading about it, we’ve realized that although her lifting restrictions have been raised to 20 lbs, it may be helpful to limit lifting, bending and straining. Overall her incision looks really well and doesn’t trouble her too much other than being itchy at times. Her stamina has also improved a lot but she still needs more rest, and can’t handle as much mental stimulation as she normally could.

Following the post-op appointment, Rachel received several referrals. Since it is uncommon to have multiple meningiomas, the surgeon would like to do some genetic testing to find out if she has a gene mutation that would cause a person to grow tumors. Her first appointment with the geneticist will be in mid-March. She did get word back from pathology that the first tumor removed was a grade 1, benign meningioma as suspected. Prior to surgery the surgeon informed us that due to the location of the tumor growth, there would be a 50-50 chance of losing her hearing following the removal. He also stated that if she didn’t lose her hearing, there was a good chance it could improve. We’ve done some basic tests at home and it seems she isn’t able to hear anything in her right ear. She has a referral for a hearing exam and test up at UW in April. The other referral she got was to see a neuro-ophthalmologist at UW who specializes in nerve palsy treatment. Rachel has a 6th cranial nerve palsy so her right eye muscle that moves her eye outward is not working. Her eyes do not track together and she has some frustrating and tiring double vision. To cope with this, we’ve put semi-translucent tape on her right glasses lens that clouds the vision in that eye while still allowing light in. She can manage getting around this way but it is very exhausting when she has a lot of visual stimulation. We have discussed getting a full eye patch for her to wear at times when she needs to focus more intently, such as in a store or otherwise. We are hopeful that this will improve in the next 6 months as the surgeon told us it will. In the next couple weeks, she will begin physical therapy and we are hoping they will help work on coping with the eye issue and possibly find some ways of helping it improve faster. She has an appointment with the eye doctor in late April along with a 3 month post-op visit. Also in late April, she will have another MRI to make sure the first tumor is completely gone and get a status of the other 2 tumors. I think I had written previously that we were worried after a second scan that the 2nd tumor had grown significantly, but after some conversations with the clinic staff we have realized that measuring these is not an exact science and can vary from doctor to doctor and scan to scan. We were shown a better comparison which calmed our nerves a bit that it hasn’t grown significantly and although it has constricted some veins, they can and have found new routes around it. This tumor on the back of her head which has caused thickening of her skull (hyperostosis) was causing minor discomfort occasionally before surgery, but seems to be more aggravated since and makes it difficult for her to sleep on her back. We will see if this gets better as her swelling goes down and discuss with the surgeon in April. The third tumor which was discovered in January doesn’t seem to be a big concern at this point, but we actually haven’t discussed this yet with the surgeon.

Rachel’s sister Mary and her husband Dan left today after being with us for a time. Again, Rachel has exclaimed about feeling exhausted, yet thankful for the help and company. Many people, including those we know well and some we hardly know, have sent cards and messages of love that have helped carry us during this time. Also during the past few months our local friends and congregation members have brought meals and helped in other ways. This has been a humbling experience for us, to be cared for by so many! This fundraising platform was initially hard to accept, since it felt we would be fine without and wanted to trust in that. But we wanted a way to update on Rachel’s condition, as she is unable to answer completely all the messages she receives, and we were told that many wanted to help in some way and this was one avenue that would allow both. I was also reminded that even these donations are gifts from God and we should accept them as such. So, it has been helpful in both ways and taken away some of the worry.

Thank you also for continuing to remember us during this time.

Nolan

Wednesday morning....from HOME!

As I made my way to the parking garage with thoughts worrying about the days ahead, I pulled from my wallet the parking ticket I had taken when we arrived at the hospital last Friday morning. For some reason I thought to check how long we had been there. My phone said 109 hours and 5 min. The days had flown by it seemed and we didn't yet feel confident in leaving the safety of the hospital where the push of a button brings qualified help to take care of any need we had. But as I thought more about 109 hours I wondered how far a person could drive in that amount of time. Although not practical because of necessary stops along the way, if someone with cold toes in Prudhoe Bay Alaska wanted to warm up in San Salvador El Salvador, they could drive there in 109 hours. When you look at the map and miles they would travel it is quite a distance. Somehow this made it easier to trust then, that we also have traveled a far enough distance on this first tumor journey for the experts to deem us ready to manage this on our own. As an electrician I feel highly unqualified to take care of her, but the neurosurgery team left us with a plan that seems manageable. If I can stay on top of the med list they gave we should hopefully be OK. But I had my doubts most of the day.....

Late Monday evening Rachel had broke out in a pretty itchy rash so she was given an antihistamine to counter the rash. This combined with the pain meds left her sleepy almost all day Tuesday. The Neurosurgery team doing rounds in the morning said we should be ready to go home, which caused my mind to swirl with all the worries that would bring. Rachel's pain didn't seem manageable at that point as new and different pains came and went with varying degrees of severity. One thing we've learned is that there is no way for them to prepare a patient for exactly what to expect post-surgery. There is a long list of possible side effects to choose from but not every patient experiences the same thing. So, several times when we brought up new worries of different symptoms we were reassured that it was normal and expected. Rachel spent most of the morning napping as she couldn't seem to shake the grogginess. Following a visit with a social worker who was working on a referral for in home therapy, she picked through her lunch and promptly fell back asleep. I wasn't sure if she'd be up for going home at all. The neurosurgery nurse practitioner stopped by again to explain some of the take home medications more clearly so we could understand best how to use them for her care. This was really helpful as we had gotten mixed messages from some of the nursing staff as to the best course of action with pain meds. Once the nurse practicioner explained what each medication does and how they work together, I felt more comfortable taking her home with a plan. At some point that afternoon we made a plan for when we would try to leave. Our time at UW in the care of those employed and educating there, has left an impression on us that neither of us wants to forget. Rachel wanted to stop by the gift shop to buy a shirt or something with the UW Medicine logo as a souvenir to remember the help we received there. The gift shop was open till 5 so we planned to leave the room by 430. But her exhaustion took over and we were nowhere near ready by then as I had a difficult time getting her awake enough to get going. We decided to scrap the gift shop plan till her 2 week post operation appointment and just worked on getting ready. A last minute new symptom brought more worry but the message again from the doctor was it's expected and OK. So, 109 hours after arriving there we left for home once she was comfortable and warm in the passenger seat. My thoughts on the quiet ride home reflected on this time and how we have been blessed even through this trial. For those that know Rachel well, you know how much she craves sunshine. The weather these past couple weeks prior to and during our surgery time have been bright and sunny, and she has commented many times how thankful she is for the nice weather even though she's been stuck inside. We believe God has helped even in this way. 

The other thought that came is one that I haven't shared with many because it's nagged at me these past few months. I can't say how long ago it started or how many times it happened, but a handful of times over the past several years, Rachel has squeezed her neck and poked her fingers in behind her ear while twisting her head around and said: "Hon, I swear I have a tumor in here." Being someone who probably wears rose colored glasses most of the time, I would say: yeah right..... I'm going to try do a better job of listening to her now....and would encourage any other married man to listen to your wife when she says something like that. This has gone as God has allowed, and we don't know that an earlier intervention would have had any different outcome, but it's been a reminder to me to pay attention to little things like that and at least ask a question about it. We are home now, she's sleeping comfortably in our bed and again I'm happy she's comfortable. We have to figure out some in-home physical therapy for her and work through the pain and eye issues but hopefully in a month or 2 she'll have some stamina back and see progress with the eye movement. I'm not sure now how often I'll update but maybe now we will have time to look through some pictures to see what she's comfortable sharing. Thank you all for the continued prayers. We still need to be remembered in this trial as her recovery will take some time. 

Nolan

Monday night/early Tuesday morning. Neurosurgery recovery floor. 

Sunday afternoon was a busy afternoon of company. Rachel's sister Ruthanne, who had been staying with our kids at home, came to visit with 4 of the "middle" kids. (Having Ruthanne at our home has been a huge help, allowing us to more or less forget about what's going on there and focus on Rachel's recovery.) So, we had 9 of our kids plus our daughter in-law with us at the hospital along with Rachel's parents and her sister. The eye doctor tried to stop by at some point but it was just too busy. We did get to bed a little earlier though as most of them were heading back to Longview that night. 

Monday has been a busy day. We were up a little early again as it seems the hospital comes to life early and it's hard to sleep in too late. The neurosurgery team makes early rounds to check in and those have been interesting and informative visits. A morning session with the physical therapist brought some challenges of walking without a walker and attempting stairs. All the while dealing with one eye that doesn't work properly and the balance struggles that come with that. The resident rehabilitation doctor then came in to check her progress to determine if she was a candidate for inpatient rehabilitation. Rachel was then finally able to shower for the first time post surgery. This long awaited yet scary shower (9.85 inch painful incision on her head!) was much needed and she felt a lot better...just in time for the surgeon to stop by. She hadn't yet met him face to face since our previous visits were on Zoom and over the phone. He has become a pretty special person in all of our lives and we are very grateful to have him caring for her. He will also operate on the second tumor if and when it needs to be removed. As ive said before, not only is he smart and talented, he's very easy to talk to and generous with his time. Rachel's parents and one of our sons then stopped by on their way back to Longview after checking out of the Airbnb they have had locally. A friend from the Seattle area who has also had surgery for a meningioma came by with lunch and we had a fun visit swapping stories about surgery. It's helpful to visit with others who have experienced this and we talked about making new friends in life who have shared experiences. There are blessings even in these trials. Rachel then had an eye exam to get a base line check for how limited her eye movement is. The ophthalmologist confirmed that the 6th cranial nerve which controls outward lateral eye movement was affected by the surgery. While the eye docs were finishing up, the lead rehabilitation doctor came in and patiently waited her turn. We had a nice visit about rehabilitation options and learned that Rachel has progressed enough that she likely won't qualify for inpatient rehab here and will need to do outpatient care back home. So, we will likely be going home in the next few days. We both took a decent afternoon nap and then spent the evening having dinner and taking another long walk around the halls here. Through all of this activity today, she has dealt with all the other side effects of brain surgery. Somewhere i read that day 2 or 3 after can be the most miserable for pain and discomfort. Aside from the eye and balance issues she's had, she has dealt with a clicking or pulsing in her head, ear pain and hearing loss, annoying hiccups, occasional intense throbbing headaches, exhaustion, and some difficulty swallowing. And other aches and pains from her angiogram puncture site and a painful incision in her belly where they removed some belly fat to use along with bees wax to seal up part of her skull when they were putting her back together. Interesting what they can do, but it comes with intense pain when she is getting in and out of bed using her stomach muscles. 

 So, while we miss our kids at home (especially our 3 month old baby), all of these difficulties she is dealing with here have us not in a big rush to leave. Hoping with more rest she will start to feel better tomorrow. It would be nice to start weaning off the pain meds but the pain (especially the head pressure and pain) has been too much to go without. It's getting late, and this is getting long, but she's sleeping comfortably and that makes me happy. We had hoped to look at some pictures together to post here but didnt get to it yet. Perhaps we will tomorrow. 

Goodnight. 

Nolan

Sunday early afternoon. 

Rachel is now resting in a new room on the neurosurgery recovery floor after being transferred out of ICU around noon. This morning the neurosurgery team making rounds stopped by for a visit and to check her neurological function. The nerve that controls her right eye had to be manipulated during surgery and will likely take the longest time to recover so her right eye currently doesn't track with her left eye completely which causes some frustrating double vision and dizziness. The doctors talked about having her stay longer than previously planned for some more intensive inpatient therapy to help that nerve recover faster. This would require us to be here an extra week or 2 depending on how it goes, but after some discussion about the pros and cons, it seems that it might be best to take advantage of it if insurance will cover. It feels safest to be near the team that operated on her, and have their group checking in on her daily as she works on stability/mobility issues. Although this is a frustrating situation, we are thankful that the other nerves that showed signs of stress during surgery are not as severe. The nerve that controls her swallowing and speech was one that could have been affected to where she would have a hard time swallowing or speaking above a raspy whisper, but so far that hasn't been a problem except for some weakness in swallowing.  

Also this morning she had a session with an occupational therapist who worked with her to start getting dressed on her own and feeding herself. With the sleepy medications and the vision issues she has, I have been helping her eat but now she has eaten breakfast on her own. She also made it out of her room for a long walk around the unit. Although she is battling with the vision issues it has been encouraging to see her making even small improvements. 

It has been really nice for us to have our parents and some of our older kids and siblings staying nearby. Together with others from the Seattle area who have stopped by they have been a much needed support and distraction. Thank you all for your continued prayers. 

Nolan

From ICU, Saturday morning.

Friday morning Rachel had an early check in for surgery.  After all the prep work and positioning, her procedure started around 945. I received updates every couple hours along the way. Around 230 I received a call from the surgeon and from the tone of his voice when he asked if it was me, I knew it had gone well. He explained the surgery and what he expected to see as side effects. I asked if we could meet so I could shake his hand as we hadn't yet been able to meet in person. He was gracious enough to come visit with all of us in the cafeteria to explain everything again and answer any questions. This was very beneficial and comforting for our parents and children to hear. We acknowledge God's gifts that the surgeon has been given to perform long and delicate operations on these complicated tumors. But also, he has a unique passion for this work and is extremely knowledgeable yet personable at the same time. The surgeon explained that tumors in the skull base don't get more complicated than hers as it was affecting many nerves in that area and he thought it had been growing for 20 years. He was able to remove 98% of the tumor and preserve function of everything as far as we can tell. She will have some transient side effects but he expects them to be gone within 6 months or so.  Following the procedure she spent some time in recovery trying to get her pain under control and then had a post-surgery CT scan and MRI.  I was finally able to see her when she came back from her MRI around 10pm. She is in ICU for now so they can check her neurological function every hour for the first night following surgery. At some point today she should get transferred to a different unit in the hospital. Continued thanks for the many prayers sent on our behalf.

Thank you. Nolan

Update from the past 10 days:

On January 13th Rachel had her preoperative appointment at UW. A fine cut CT scan was done to help with mapping out the bone structure for surgery. The CT results also revealed a small third tumor that was previously missed on the MRI, and showed that the second tumor (the one not being removed yet) appears to have grown since the last scan. All of this will be further discussed once she has recovered from this upcoming surgery.  

This morning (Wednesday, Jan 22) we came to UW for pre-surgery labs and a cranial angiogram to map out the blood vessels in her head. The plan was to also perform an embolization, if viable. During the procedure, the doctor was able to embolize a large vessel supplying the tumor, which will help limit blood loss during surgery. Rachel is recovering now in ICU and will be discharged Thursday if all continues to go well. Her parents and some of our older children will be staying nearby the hospital, and we will join them for one night before coming back for surgery Friday morning.  

We humbly thank all who have supported us and remembered us in prayer during this time. We also ask for continued prayers in the days to come. We are confident in the surgeons abilities but acknowledge the risks involved and want to trust that God already knows what lies ahead and will give strength to endure.