Missing Those Summer Days

Today, December 29, is downright gloomy. We are having a typical Pacific Northwest storm. The skies are dark. The wind is blasting against our house and whistling down the street. We have had enough rain that J and Sasha came back from their morning walk completely drenched, despite J's raincoat and boots.

We have been very fortunate this winter to have a number of days/ parts of days where we could spend time outside. Two days ago, J and Toe had a great game of catch in the park. Today is not one of those. It's the kind of day that, if you grew up on the coast here, you remember from your childhood.

So, I'm choosing to share some photos from adventures we had this summer, when we wore single layers and felt the sun on our faces.

Grandparent Visit

This is a photo I received from J while on their trip! J assures me Toe didn't really drive...

J and Toe took a trip to the Gulf Coast to visit Jason's folks this summer. Because of Sasha's age and health issues, I had to stay behind this year. While Sasha and I walked the neighborhoods and spent time in the back yard relaxing, the boys had a series of adventures.

First and foremost, the family spent time on the beach in the water. J's folks live very close to the beach and spend much of their time there. They have an amazing set up and are able to load up the truck for a picnic or barbecue at a moment's notice. In July and August, the water is bathtub temperature and there is usually a strong breeze that alleviates the heat.

With Grandpa Boat

With Grandma Gus

 Toe even ate meals in the water this visit!

Toe practiced swimming in the ocean and in the canal behind Grandma Gus and Grandpa Boat's house. J says that they also played on paddle boards in the canals.

It wouldn't be a trip to Gus and Boat's without science as well. Gus has an amazing garden at her house and volunteers at the local botanical gardens. Currently Grandma Gus is working on a research project with monarch butterflies and the family spent time examining specimens and looking at the life cycles of monarchs.

 Gus and Boat also volunteer at the local national park working with sea turtles. They tour the beach watching for turtles laying eggs and are trained to remove the eggs to an incubating facility; they also participate in releases. July and August are prime times for turtle releases and J and Toe were able to attend one where Gus and Boat volunteered, holding a net above the tiny sea turtles to prevent predators from attacking on the slow journey to the ocean. The turtles must make the trek across part of the beach, though, to be able to return to the same spot when it is time for them to lay eggs.

That's Grandma Gus on the left!

It's a long journey down the beach for these little guys!

The guys visited a local arcade/go-kart track where Toe took a lone lap on the kiddie ride before riding in the sidecar as J and Grandpa raced on the faster track.

Golf carts are pretty typical on the island where Gus and Boat live and Grandma Gus rented one just for Toe as a special treat. The thing had seat belts and was mostly for puttering around the neighborhood and to the beach, but Toe and Gus had a great time driving together.

J and Toe returned to the Pacific Northwest tanned and happy. I was sad to miss the trip, but look forward to next year!

Quick vacation

Toe at Namanu

This summer seems a blur. We were very busy with family in June/July and then spent most of August recovering (at least a week inside due to the smoke from forest fires across the west coast).  Sasha (our 14 year old shepherd mix) is ancient and has had a number of health issues that kept us relatively close to home or taking vacations in turns. The one exception was a family trip we took with my mother to Mt. Hood. We were only gone overnight, but we had an amazing time.

Mom wanted us to visit her childhood summer camp, her favorite place in the world. I did family camp there as a teenager (we lived out of district, so I did not qualify to be a regular camper) and we have taken Toe to family camp, but he was very young when we went (only three!) and barely remembers it. J had never been to the famed Camp Namanu. So, on Open House day (for campers to see camp and meet the counselors beforehand) we drove three hours to Mt. Hood. Toe played games with the counselors in the meadow and we had a tour of the camp. It was a lovely afternoon and we have decided to sign up for family camp next year (with J joining us!).

Camp Namanu is on the banks of the Sandy River on Mount Hood, so Mom reserved us a bunk room at Timberline Lodge and we proceeded up the mountain to experience another mainstay of my childhood. Yes, this is the hotel from The Shining (only the outside). No, it is not remotely creepy.

Timberline Lodge

Mount Hood, J, and Toe

Above the clouds!

The Lodge was built during the Great Depression as part of the New Deal and has served as a ski lodge/hotel ever since. There is now a lodge below for skiers but the hotel draws many visitors to see the incredible architecture and artistry. We went to dinner in the main dining room and then Toe took a dip in the pool. I dipped my toe in and decided I'd rather lifeguard fully clothed. It was chilly! Because of Toe's CF, he is not allowed in hot tubs (they can harbor bad bacteria that can get into his lungs) and J and I don't partake when Toe is around. Mom, however, had a soak and enjoyed herself.

In the bunk room

CF Life does not stop on vacation.

The next day, we took a guided tour of the Lodge and were completely overwhelmed by the information about the building's construction. Some highlights:

• The building has no metal holding it up. Only wood and stone.
• It was created using Ponderosa Pine, Doug Fir, and volcanic rock from further up the mountain, leftover glass, wood, any scraps they could get. All of the wrought iron decorations were made from scrap metal.
• The wood was hand-hewn and the building was constructed without the use of machinery (mechanical cranes, electric saws, bulldozers, etc.).
• Stonemason immigrants from Italy built the chimney and mixed ground volcanic rock with cement for mortar, which is why the chimney is still in such good condition.
• All of the curtains, chairs, tables, benches, beds, upholstery were all created and are maintained specifically for the lodge.Those were also created using old army jackets, wool sweaters, leftover fabric.
• The Lodge was built in 15 months!

Wooden pegs and gravity hold this building in place!

Chimney - second floor. The chimney runs from the ground floor through the ceiling.

Entrance to the Blue Ox cafe where there are amazing stained glass murals.

 The craftsmanship of the building was incredibly inspiring.They built a thing of beauty with the intention that it would last a very long time.

On our way home, we took a detour to observe the damage done by the Elk Creek fire last summer. The old highway still goes past Crown Point, but was closed after Multnomah Falls.We drove along the Interstate and saw the damage for miles. It's hard to convey in photos. Many of the trees on the hillside looked like toothpicks or like defoliated deciduous trees but they were once evergreens. Many trees had scorch marks on their trunks. It was important for us that Toe saw this to understand a what a single act can do. We were all pretty quiet on our way back to Portland.

Crown Point - Temps in the 90's. Toe was not impressed by the view.

Those trees on the crest were once evergreens

Note the scorch marks on the trunks.

Even though it was just an overnight, we all had an amazing time. I'm SO glad Mom suggested we do this and that Ron and Jamie gave her the time away (and Miss R watched Sasha for us!)

Great Strides 2018

The weather was perfect, we had a small but mighty team, and we raised about $3,000 for cystic fibrosis research. We want to send a HUGE thank you to everyone who donated, who walked, and who sent Toe encouraging messages!

This was the seventh year Toby's Green Team participated in the Cystic Fibrosis Foundation's Great Strides walk, a gentle 5k through the neighborhoods of southeast Portland. Our team size was reduced this year - a spate of illnesses, previous engagements, and family issues prevailed on some of our regular striders. Our small team included long-time friends and Toe's best friend from school. Having reduced numbers meant that we stayed closer together during the actual walk and then we were all able to go to pizza afterward (this was also a first because Toe is usually fried after the walk and I have to take him someplace to rest).

2018 Toby's Green Team - Small, but MIGHTY!

Toe loves the event every year. He is surrounded by loved ones and has a chance to see how much support there is in the community for his rare disease.

I think J and I have more mixed feelings about this walk. Because people with CF can cross-contaminate nasty lung bacteria, the CF Foundation recommends that people with cystic fibrosis never be in the same room together and when outdoors, they should remain 6 feet apart at all times. This means that Toe rarely gets to meet or spend time with other CF patients. Great Strides is one of the only times per year that people with cystic fibrosis congregate. It is a chance for Toe to see that he is not alone in this struggle. There is also a slim possibility that he could contract some new bad bacteria from the walk. Walkers with CF are given special colored shirts to wear that say "I am a fighter" on the back. We spend much of our time steering Toe clear of other CF patients, especially adults (who often culture worse/more dangerous bacteria). There are many protocols in place, but there are also things we have to let slide - knowing that others with CF will be using the public restrooms, likely hugging the mascots our son wants to hug, etc. We are torn between having Toe participate in a group event that is so important to him and keeping him safe.

The thing that makes it worth it every year is the support from our friends. Each of our seven years, we have had great friends come to walk with us and entertain Toe (and help provide a physical barrier when necessary).

Some highlights from the walk:
Brian and Leslie went all out with new hats  this year. I was drooling over Leslie's fascinator - complete with feathers!

Best Green Team Hats

Toe was joined by two friends this year. The one on the left is his best friend from school who rode up with us for the day. The one on the right is the son of one of our friends from high school. In a strange act of synchronicity, D was born the day before Toe. I remember J coming home that night ten years ago saying, "Sweetheart, Paul and Liz just had their baby," and my reply, "Um... we're having ours right now! (six weeks early)" D and Toe have known each other forever and this is D's second year walking with us (along with his mom - thanks Liz!).

Seriously Awesome!

On the walk, we strategically straggle - so that we are near fewer people with CF and not being passed all of the time. Our group is notoriously slow. This year, walking conversation focused on bad jokes and D&D.

As this was the 30th Anniversary of Great Strides, this year, they had signs with historic milestones posted along the route. This one was particularly special to Toe.

We are an easily distracted group, so there is usually a stop at the park along the route - to play frisbee, to rest... this year we found teeter-totters.

After a bathroom break and Icees we all decided to go out to pizza..

And after pizza, some of us made it to Free Comic Book Day. J continued the afternoon with friends in Portland and I drove the two coastal boys back home. I was surprised how much more energy Toe had at the end of the walk this year. It was a long day, but another great Great Strides experience!
 

Sasha Update

Our girl, Sasha is officially old. By our calculations, she will be 14 in June (give or take, she was originally a shelter dog, so her origins are sketchy). She has started having some health issues this winter - loss of appetite, stomach illness, failing back legs... She has been in and out of the vet many times and they have determined the following:

• She has arthritis in her hips. She is on an anti-inflammatory pain med for this, as well as glucosamine.
• She has a tumor near her lungs that will eventually impede her breathing.
• She has failing internal organs. They have her on ursodial for gall-bladder issues.

The vet offered for us to look into surgery, but because of her age and issues with her internal organs, we have opted for palliative care. We plan to provide her a good life with hopefully more good days than bad ones. When the bad days outnumber the good ones, it will be time to say goodbye. Honestly, based on her condition around Christmas, I am surprised she is still with us.

Sasha is slow and spends more of her day sleeping than anything, but she still becomes very excited about walks, food, and sunshine in the back yard. We take her for 2-3 walks through the neighborhood per day (this is mostly Jason), allowing her to choose the path and speed. She prefers going downhill to uphill, which occasionally causes us to gently guide her back uphill before she goes so far, she can't return home. Somehow every trip leads us past the corner grocery/deli where they know her by name and feed her a dog bone (sometimes twice a walk!).

Dog massage by her favorite person in her favorite place. What's not to love?

My cousin, Lenore,  had a large yard and spent most of her spring/summer/autumn gardening. Sasha seems happiest when we are in the back yard, doing some kind of yard work. Mowing doesn't bother her. She chooses a sunny spot and alternates between supervision and naps.

She is also a HUGE chow hound. Any meal is a huge event of interest for Sasha. We mostly have to limit her diet to chicken and rice, but the SMELLS are enough to keep her riveted on us (and occasionally sniffing too close to our plates).

Working from home has allowed us to give Sasha the attention she needs. She tends to become stressed out if we all leave her, even with a great dog-sitter who is her friend. We plan to stay relatively close to home for the coming months (or take turns away) to try to keep our girl happy and healthy. She was an amazing dog for Lenore and has been the perfect family pet for us. She helped Toe overcome his fear of big dogs and has taught him about co-habitation between different species. We all have benefited greatly from knowing her.

Because of Toe's health issues and the time we are away from home, Sasha is likely to be our first and last pet for quite a while. We are enjoying each moment (and I think she is too)!

Soccer Birthday

In February we went to watch our friend's son, Jake, play soccer on his 18th birthday. It was a beautiful winter day and many of our friends gathered to support him. I'm not sure how Jake felt, having his mother, father, sister, and many of their friends and relatives all cheering him on (maybe a little louder than we needed to!), but we had a great time. He took it really well.

It has been a wonderful experience to raise kids with my friends. The "kids" range in age between 23 and 10, all 4-5 years apart. Toe is the youngest of the group and that has allowed me to watch my friends experience babies, elementary school, junior high, high school, puberty, graduation. I have learned so much watching my friends navigate the various parenting joys and pitfalls. The older kids have always been fantastic with Toe and although he doesn't have a built-in community of peers, he does have a built-in community of kids to look up to. He admires the other kids greatly.

Toe watches Jake tend goal

The community of support for our kids includes a variety of parents and non-parents, all who have invested time, energy, and love into their upbringing. We are so lucky to be able to share moments like this with friends, to celebrate this crazy life process with all of its twists and turns.

Happier Sinuses

This was Toe's first surgery since he was a baby. He had PICC lines put in each time he was admitted to the hospital for an exacerbation, but those were put in while he was awake (although highly sedated). This was the full enchilada.  He was anesthetized. He had a three hour surgery. The surgeon cleared out all of his sinuses. When she came to speak with us after the surgery, she said that his sinuses had been "really bad." Apparently they were inflamed, with many polyps. It was a major job to take care of everything. The ear, nose, and throat surgeon (ENT) likened the surgery to Ms. Pac Man. At the time, I thought she meant the tool she used took tiny bits off polyps like a chomping machine, but now I know it ALSO meant that she was going through maze-like cavities, removing junk.

The surgery afforded us the opportunity to have samples taken from his sinuses and his esophagus so that the CF team can see what bacteria are growing in there and compare that to the regular throat cultures they take. This helps them prescribe antibiotics specifically targeted for the bacteria growing in his body when he needs antibiotics.

Toe went to sleep enthusiastic for the surgery and woke up groggy but amiable, immediately asking to continue the "chat pack" question game we were playing while waiting for the surgery to start. We had to wait a couple of hours until a room was ready for us in the hospital (we stayed overnight) and around 6:30pm we finally moved. Toe, understandably, was very hungry. He ordered steelhead and roasted potatoes for dinner and ate it all, licking the plate. He said he wanted to eat the same thing all day the next day. The first thing he said the next morning was, "FISH." He had to settle with pancakes for breakfast, but we managed fish for lunch and dinner (thanks to my mom who made her special "salmon packets" for us to roast at home).

Yummy steelhead and roast potatoes

Waiting to go home

We're on round-the-clock pain meds for the next few days, so we have had interrupted sleep... Sometimes needing snacks in the middle of the night as well. We arrived home to a sick dog (we had a fantastic sitter staying with her... Sasha is just an old dog) and have been dealing with getting her to the vet for assessment just in case.

Toe is in good spirits. He is a little grumpy that his sinuses are inflamed (from the surgery), but understands he will feel better each day. He is taking meds and doing nasal rinses like a champ. The ENT had said, "Those CF kiddos are so tough, they seem to manage pretty well after surgery." I'm inclined to agree, at least about this one.

Toe has regained his sense of smell (lost gradually due to the stuffed sinuses) and is having some drainage. This mostly manifests as stuffiness and sniffing. He has energy in the morning, but wilts over time. I wish I could get him to nap, but I think that's unlikely. He mostly seems like he does after a long day of school. Certainly his sense of humor is intact.

J and I are feeling a little ragged around the edges. We took shifts for the round-the-clock meds last night, and that helped. J has gone to help with a necropsy today on a beached sea lion (yes- you never truly leave the aquarium) and Toe and I are home, waiting to pick Sasha up from the vet. Medical equipment is unpacked, laundry is in the wash, nebulizers are boiled, a schedule is set up to accommodate the new meds Toe needs for the time being (in addition to the regular CF ones).

Upcoming Surgery

One of the most frustrating things about CF is that it is progressive. In this instance, "progressive" has a few meanings. First, progressive means that Toby's condition will worsen as he gets older. Second, and the one we have had to deal with more in Toe's life, is there are always new issues cropping up. You get used to the idea that your child has CF and that your newborn needs pancreatic enzymes to digest and then the lungs get an infection and you have to start doing antibiotics and respiratory therapy. You get used to respiratory therapy with Pulmozyme and the cough is not great, so you add saline. There's always something. As a CF parent, you know that scary conditions like CF diabetes, bad bacteria in the lungs, failing internal organs, or nasal polyps are all potentials on the horizon, but you learn not to stress about them too much, because you never know what's next on the docket and the one that's NEXT is the one to deal with. Very few things become "cured" forever. It's something else to add to the daily maintenance.

I'll give a full health update soon. What's NEXT for Toe is surgery for nasal polyps. What are nasal polyps, you might ask? I am SO glad you did! We had this explained to us yesterday at the Ear Nose and Throat Specialist.

Children with CF build up mucus in their sinuses as well as in the lungs. Even with regular saline rinses and other preventatives, sometimes the sinuses become so inflamed, that the inflamed tissue pushes into the nasal passages, between the natural ridges that exist there, forming polyps. As I imagine it, it's a little like sinus hernias...Over time, these polyps grow and eventually block the nasal passage. There are some things to do to slow the progression of polyp growth (we have been doing them), but once they are blocking the nasal passageway, surgery is the only option.

Toe has had polyps for about a year, and the doctors have been watching their growth. The last two months, the polyps have become a problem. Toe has been going through BOXES of tissue, trying to clear his nose. He has lost his sense of smell and can barely breathe through his nose. At our CF appointment mid-month, the doctor said, "WOW! Yeah! The polyp in his left nostril is HUGE," and referred us to a pediatric otolaryngologist (ear, nose, and throat doctor - ENT).

Toe has large polyps in both nostrils. They interfere with his sleep. They are driving him so crazy that he said, "Mom, all I want for my birthday is to get in to see the ENT doctor sooner than the 13th." We were able to get in on a cancellation and met the ENT yesterday. Surgery is imminent, but like all things CF, it is slightly complicated with many moving parts.

I'm supposed to call the scheduler on Monday who will talk to me about possible surgery dates. My understanding is that it can take insurance up to two weeks to approve the procedure. I'm not sure if we can set a date for two weeks out and cancel if the insurance doesn't go through, or if we have to wait until the insurance approves the surgery to schedule it. After that, Toe's situation is serious enough, that the doctor made a note about urgency to the scheduler, but she has no idea about her availability.

Once we set a date for the surgery (which could be in two weeks or not), we contact the CF clinic and set an appointment for a week BEFORE the surgery when we go to the CF clinic and they examine his LUNGS. The CF team wants Toe's lungs to be in fantastic shape before the surgery, so at that appointment, a week before his surgery, we will find out if Toe needs a hospital admission to give him IV antibiotics to "clean out" his lungs. This could be a week, a couple of days, or no IV antibiotics at all.

Then there's the surgery, which is an outpatient procedure. We have been told that there are 1-2 days of "drainage" and then Toe can resume school in 3-5 days.

So, the whole process could involve a few days' stay at the hospital before Toe's surgery, or not, and will happen sometime soon, maybe in February or March... Toe could miss a week a week of school or two, depending. In the meantime, we have to keep him healthy BEFORE the week before the surgery. During flu season.

Toe has been a champ. He is mostly excited for the surgery because he is so uncomfortable, although last night at dinner, as we were going over details, he had a moment of sadness, where he welled up and then said, "No. I can't cry. That will just make more mucus and I'll have to blow my nose more." We had a good laugh and moved on.

We have been told that polyps are an issue for about 35% of the CF population at our clinic. My understanding is that if you grow them, it will be a lifelong issue. We'll do saline rinses and Flo-Nase as preventatives, but the polyps will likely grow back. Some kids need surgery every few years, a few need it every year. As with all things CF, we will do due diligence and face the next thing when it comes.

Right now, to deal with the uncertainty, we're breaking it down and taking things in steps. Yesterday, we had our consult, followed by a CT scan of Toe's head, so the EMT could use it as a map as she shaves away tissue in Toe's nasal passages. Toe has been prescribed Prednisone (a steroid) to try to reduce some inflammation to make the situation more bearable in the meantime.

Today: Try out Prednisone to see if the steroid is ok, or if it makes Toe so wild/wired/amped that it's not a good idea to give it to him at school.
Sunday: WAIT. Follow all other maintenance routines.
Monday: Call scheduler and sweet talk and beg for a surgery date.
Then????  We should know more on Monday. Two days ago I was saying "We should know more on Friday," and we do. Sort of.

Toe had a great time with the CT scan. He said it was a little like the Star Tours ride at Disneyland. He also said last night, "I might have to fake nasal polyps, because I could ride that CT scan again nine times!" As you can see, his nose might be blocked, but his sense of humor is not.

I'll post more as I know more.

Toe's first "ride" on the CT scan.