The Next Chapter

We moved to Kingston.

For those of you who are unfamiliar with where Kingston is or what it is like, let me tell you. A 30 minute ferry ride across the water from Edmonds, Washington, it is known as the northern gateway to the Olympic Peninsula. A cute and quiet little town located on the shore of Puget Sound. Beyond the marina and the charming few blocks of coffee shops and restaurants are neighborhoods, farms, local businesses, schools, offices… all spaced out amid the vast green landscape. Kingston is a place where nature’s beauty shines brighter, and the birds sing a little louder. A perfect blend of water, mountains and forest. So many beaches and trails to explore around the Olympic Peninsula, it’s like a giant playground. In Kingston the pace of life is slower, more relaxed. Not a single siren to be heard. Driving to the grocery store we pass pastures with horses and cows while admiring water and mountain views. Traffic? What traffic? Only to get on the ferry during the weekends. It is a 15 minute drive to “Little Norway” aka Poulsbo, the small but touristy town full of clothing boutiques, antique shops, and restaurants. Plus any large shopping center or nursery you can think of. close by. Kingston is close enough to Seattle for when we need it to be, but has the feeling of being far away from the city. There is an innocence about Kingston, like I’ve travelled back in time to when I was a child. To the days of Ernst Hardware Store and Village Lanes bowling alley at the University Village. We are ready for a change, ready for more space, ready for peace and quiet. Kingston is our new home, our new beginning. If you ask Theo how he likes living in Kingston, he’ll tell you, “I don’t like it… I LOVE it!

Our commute to Seattle Children’s Hospital is no longer five minutes. Now it takes anywhere from just over an hour to an hour and a half. When Theo has appointments we stay at my parent’s house in Seattle, aka Hotel MorMor and C. We are so fortunate to have had the luxury and convenience of living with them throughout Theo’s treatment and now as a place to stay when we need to be close to the hospital. A life saver. The light that has helped get us through the darkest times. Thank you, one billion times, Mom and Dad. It’s been truly special for all of us, but especially for Theo. Each time we pack our bags and head back to Seattle, Theo stirs with excitement to get on the ferry and see his grandparents, desperately hoping that we will get a spot with the best view.

Lately we have been taking the ferry quite often, in fact weekly. As I mentioned before, Maintenance is all about finding the right balance of medications. The dose that will put the patient’s blood counts in the “sweet spot”. Not too high, not too low. Initially, we thought Theo was on track. Other than the blood transfusion he had on February 2nd, there was no need to change his dose of chemotherapy. However, on February 23rd, we were given the order to hold chemo for one week (except Imatinib) due to low platelets. When we returned the following week on March 2nd, we were instructed to continue holding. Theo’s platelets had gone up to 65,000, but his ANC was down to 400. ANC must be at a minimum of 500 to continue therapy. So now that’s two weeks of holding oral chemo. By the following week, we thought for sure his numbers had recovered. Nope! On March 9th, we returned for a lab visit and back poke. Theo’s ANC had dropped to 300!! If counts do not recover after two weeks then Imatinib has to be stopped as well. Presently, ALL oral chemotherapy is on hold. But the real downer is that Theo could not go to the sleepy time room. Not because his ANC was low. It was actually due to his cough.

On February 5th, Theo was given a broad spectrum swab to check for viruses causing his cough. His swab came back positive for two viruses. It’s been over a month and while his cough is much better now, it is still not completely gone. Every morning he sounds like an old truck motor trying to start. During the day it is more under control but there is obviously some post nasal drip junk stuck in there that he has trouble getting out. At his visit this past Tuesday, March 9th, his doctor detected some slight wheezing in his lungs. She prescribed Cetirizine once daily for allergies and Albuterol twice daily to help open his airways. The doctor thought Theo would be given the green light to go to the sleepy time room because the wheezing is not severe and he wasn’t coughing at all during the exam. As soon as the anesthesiologist walked into the exam room Theo started coughing… and didn’t stop. The more conservative decision was then made to delay the back poke until the following week. Hopefully using the Albuterol inhaler an taking Cetirizine will do the trick of finally kicking that cough to the curb. Theo will return next week for another lab visit and possible back poke. That makes four weeks in a row of appointments. We were not expecting to be back in Seattle that often but at least we have a beautiful ferry ride to enjoy and delicious dinners with MorMor and C to look forward to.

Theo still has his port… but fingers crossed, not for much longer! One good thing about having weekly lab visits is that it has given Theo more times to get used to having a poke in his hand so his port does not have to get accessed. I made the mistake of thinking a poke in the arm or hand would be so easy. He’s had plenty of pokes before (like the famous four that he got when he was first diagnosed and likes to remind us of). It even sounds easier, right? Wouldn’t you rather get a needle poke through your arm instead of your chest? Surprisingly, the first arm poke did NOT go well. We arrived for a lab and provider visit on February 23rd with numbing cream on the inside bend of both of his arms and some on his port site just in case. I was expecting the entire blood draw to take five minutes, maybe. Theo, on the other hand, was terrified. He wanted to know what the nurses were doing at every step. What is that? Will it hurt? Why? Can I see it? Is the needle big? How far does it go in? And on and on. It only got worse when the nurse could not see his vein. Theo’s veins in his arms are small and the numbing cream makes them shrink even more. While the nurses put heat packs on his arm and had him squeeze his fist several times, Theo got so nervous he peed his pants a little bit. After an underwear change, the nurses tried again. The needle went in Theo’s arm but not in the vein. It was too small to find. Theo finally burst into tears complaining of pain after a minute of the needle moving around under his skin in search of the vein. The nurses gave Theo some time to calm down and returned 20 minutes later to access his port. Now that was easy. Like it usually is. No pain, no tears, no fear. Had I made a huge mistake thinking that getting the port out was a good idea? I felt so bad. What I thought was going to be a quick poke in the arm turned into an hour long ordeal. Theo, who always apologizes, even when he’s done nothing wrong, also felt bad and kept telling me between sobs that he was sorry. He admitted that even though he had pokes before, it had been a long time and he just wasn’t used to it. I could have held him in my arms for the rest of the day if he would let me.

Fortunately, Theo has larger and very visible veins in his hands. The nurses told us not to give up. It will be easier next time when they do the poke in his hand. So that’s what we did the next two lab visits and… it worked!! We put numbing cream on both of his hands and port site. Child Life was there with extra support and distraction, a huge help. Theo regained his confidence and cheered after the second time having success getting the poke in his hand. If the next hand poke goes well, the next step will be to take out the port! Hooray!!!

The sun is shining and Theo is laughing. The silliness with this boy never ends. Even after the lights are out, he is still throwing rhymes and riddles at us. Every time Theo turns one year older I catch myself saying, “this is my favorite age”. Since the life and energy has returned to Theo, we can see his true five year old self. It is magical. I have said this many times, how FUN Theo is. It is true and the better he feels the more fun we have. I’m not kidding. Daily I find myself laughing to the point of a stomach ache when we are playing. Luis and I shooting each other looks while we laugh hysterically. Theo is also a love bug who wants to help with everything. He will scramble the eggs in the morning, sweep the floors, combine the matching socks from the clean laundry pile, pull weeds, you name it. We are home together all day while Luis is working full time. Theo is my little buddy, my companion and coworker these days. He keeps me on my toes, especially when I make the mistake of saying the word, “can’t”. That word is NOT allowed. Why? Because you CAN do anything you put your mind to. Theo knows it and reminds everyone when he hears that word. Theo is also a sensitive boy. If Luis and I raise our voice, or get stern with him, Theo apologizes immediately. Sometimes he will get so sad or scared he will cry, saying that he is embarrassed by what he did. As much as I want to hug him while he cries, I do not want him to dwell on these things. We want him to learn from his mistakes and then move on. No silly tears. We want him to be assertive, speak up, and be confident. Theo has never been the kind of kid to run into a room uninvited. To yell out the answer before raising his hand. To grab a toy without it being offered. He would rather wait, be quiet, and know that it is his turn. Life will change drastically for him when he returns to school. My coworker no longer by my side all day. I know it will be good for him. To learn to stand his ground and have his voice heard. To be proactive and know that making mistakes is OK. And when he has a hard day and needs a hug? I’ll be ready to hold him in my arms as long as he will let me.

Had you asked me ten years ago if I would ever consider moving out of the city, I would have scrunched up my nose making a sour face and said, “Eeeeew NO WAY!” Well, turns out my 30 year old self had no idea what was coming. Not that I don’t LOVE Seattle. I do love it. It is also my home. Seattle is where my family and best friends live. It is such a beautiful city. As much as I love space, I also appreciate the convenience of being able to walk or bike everywhere. To have access to everything at your fingertips, life and people buzzing around you. I have taken full advantage of living in Seattle but now I am ready for something different. My family is ready. Space, for Theo and our dogs to play in the yard. More awareness of nature and wildlife around us. To watch the excitement explode in Theo when he sees a deer walking down our street or a seal sleeping on the beach. I want to go to the beach and have it all to myself. To not fight for a parking spot or have to listen to the conversation of the people sun bathing next to me. I want more quality time with my lovies. Yes, we are going to have FUN!!!! Oh… and did I mention we also got a new puppy?

“You’ve got to accentuate the positive, eliminate the negative.” – Bing Crosby