A very hard way to begin the Summer

 “Please listen and answer me, for I am overwhelmed by my troubles.” Psalm 55:2

If you’ve been following us on Facebook, you may already know some of this.

This has been a hard month, hard year, hard past seven years of battling this stupid disease. Chelsa is still in a tough place. After finding out that coughing too hard from pneumonia caused bleeding in her brain, she was told that surgery to drain the blood was far too dangerous due to her low blood and platelet counts and that she would just need to deal with the pain and wait in hopes that the bleeding would stop and that the pressure from the blood surrounding her brain would dissipate on it’s own.

After 10 days in the hospital, she improved enough to allow us to go home, but she’s still been unable to eat much, vomits regularly, unable to sleep more than a few hours at a time, still has severe head/neck pain, muscle/bone pain, dizziness, and as you might imagine is just very discouraged.

On top of all that, her doctor let us know that because her blood and platelet counts are continuing to drop so quickly, Chelsa will need to check back into the hospital today to receive some heavy chemo. We knew this was coming and we were hoping to wait until she had her full strength and health back, but it’s time. 

Thankfully, we’ve had great family, friends, sunny days and a fluffy cat helping to encourage her and, as Chelsa reminds me regularly, she is “tough as hell.” However, given the shitstorm of pain and suffering she has gone through recently, along with her history of severe reactions to chemo, we need prayers.

Tonight she will receive the first dose of Velcade and we will just need to wait and see how it goes. The hope is that the drug will work and not have any severe side effects.

Please join us in asking for strength, endurance, and protection. For the drug to be effective, for bones that get back to producing the blood & platelets she needs, for healing in her cells, for the Multiple Myeloma to back down and disappear completely, for peace that better days are ahead, and for a new season that involves some island travel or maybe a European adventure.

Thank you! <3

- Matt & Chelsa

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33

Happy National Napping Day!

Roberta napping on National Nap Day

Isn't it perfect that today is National Napping Day?! The day after Daylight Savings Time seems a perfect day for it.

Also, it was perfect for me because I needed to get platelets and chemo and got to actually take a pretty good nap after not sleeping very well due to having bloody nose at 3am. I've been getting pretty nasty bloody noses almost daily, which has highlighted the urgency in figuring out the next steps for me to take.

Today, my oncologist surprised me by telling me that he and the allergist that Matt and I met with a few weeks ago had been talking about possible solutions for my treatment and care. The allergist went to a research conference last week and presented my case to some of his colleagues (who had also NEVER treated someone with the types of drug reactions that I have!).

However, they had HEARD of my type of reactions to drugs and concluded that a cytokine blocking drug combined with a drug that I had previously had a reaction to in the past may be the solution that I've been looking for. So, in a couple weeks or as soon as insurance approves all this, I will be trying Velcade and a cytokine blocking drug. This is a HUGE answer to prayer and I literally burst into tears when my oncologist gave me this option.

It has been a very stressful few weeks and this was totally what we were hoping for. We would totally appreciate your prayers that this works and gets me to the place where I am eligible for a Car-T Cell Clinical trial---or just miraculously cures me!! Thank you for all the love, prayers and support!! We would be a hot mess without all y'all.

New Year, New Baseline.

Time for a quick update on Chelsa's battle with Multiple Myeloma. It's been a long day. First thing this morning Chelsa had a bone marrow biopsy... a fairly quick procedure, done under conscious sedation... meaning she's awake but pretty out of it. I felt really good about her doctor as he let me sit in the room with her while he performed the biopsy... and let me just say... he is a badass. Never had a bone marrow biopsy? Imagine a wine corkscrew with a little straw in the middle of it that you can suction the wine out with... only instead of a cork, it's your butt/hip, and instead of wine, it's bone marrow. I thought I was fine until the doctor was pouring the marrow on the slides and spilled it on his hands... thankfully I was sitting down. 

The reason for the biopsy was information gathering. We need to make some decisions about the next steps in Chelsa's treatment. She has been receiving chemo therapy treatments of Elotuzameb, but it is meant to be given with another drug in order to be effective, so currently only seems to be keeping the disease from progressing, but not reducing her cancer count... which we need to do in order for her to be eligible for any CAR-T Cell clinical trials that may open up. (We are currently on lists at Seattle Cancer Care / Fred Hutch in Seattle, Stanford in CA, and Sloan-Kettering in NYC).

The problem is that Chelsa has several (allergic?) reactions to most of the chemo drugs that we have tried. See all of our past posts about going the ER / ICU... poor girl has been there so many times, (6-8?) that it's becoming normal... terrifying every time though. We are afraid to try any other chemo drugs as barely a smell of them spikes Chelsa's fever to 106 degrees. We need to do something, however, and are trying to decide whether to return to trying a drug that she's done in the past, whether to try a much smaller dose of a drug she has had a reaction to (though our doc says that sometimes the dose strength doesn't matter much if it's an allergic reaction), or whether to do the "nuclear option" which is a three-drug combination (including melphaline, an agent orange ingredient which she did during the stem cell transplant and caused her a lot of suffering and hair-loss)... that's the standard protocol for others in her situation and what the docs thinks we should probably do... it would require her to be in the hospital and is a pretty scary option.

The biopsy results will help us better understand the DNA / genetic chromosomal changes of her specific case of Multiple Myeloma. This disease is a genetic mutation and recent research has resulted in defining a new word: the "suclonality" concept --a prevalence of wide heterogeneity at the molecular level-- which is a lot of doctor-talk to say that the disease is diverse in character and very hard to standardize treatment for. The good thing about that is the growing realization that we need a more targeted individualized treatment for this disease.

For most DNA alterations, there are not enough data to guide treatment decisions. An exception is t(4;14). This is one of a type of chromosomal abnormalities called translocation in which a chromosome breaks and a portion of it reattaches to a different chromosome. Studies have shown that patients with t(4;14) have better outcomes when treated with a proteasome inhibitor, such as Velcade.

We most likely will try Velcade again as it's a drug that Chelsa had some success with between 2012-2015. It put her in the ER in 2015, so we are hoping that will not happen again.

Some really good news is that in this quest to get a new baseline, Chelsa did a full body MRI last week to look for any bone lesions or tumors--and there are NONE!! That is pretty incredible, as she's been fighting this disease for 7 years now. We are beyond thankful for the scan results.

Chelsa is also still pursuing treatments with a Naturopathic doctor... much of which still needs a lot of research support, but has shown promising results... this includes Mistletoe Injections (we get these from Canada and I give them to her via a small needle about 2x week); PolyMVA + DCA (plus a ton of supplements) which has resulted in some severe reactions, most recently in the form of severe breakout and swelling on her face; and lastly a few basics -- B12 butt shots and a modified ketogenic diet, which we have not been strict about, but has at least lead to some reduced carbs and a bit less sugar.

While this has all continued to be pretty hard, we have still been finding lots of ways to have fun. We recently had an AMAZING 5-course dinner at Marine Hardware and tried a "Puzzle Room" in celebration of Chelsa's birthday. We had a wonderful Christmas, with Matt's mom visiting, hosted our family Christmas party and celebrated our 7 year wedding anniversary. 

Thanks for being in our lives. We couldn't do this without the love, support & prayers of our friends and family.

Endurance and updates on our hopes for a clinical trial

Matt and I were recently asked to write a short letter to our church to responding to the question "How has enduring suffering effected our hope in God?" 

The sermon was on Romans 5:3-5 which reads, “Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.”

This is something we have a little bit of experience with and it's pretty heavy, but I hope it's also encouraging and helpful to you if you're in a hard time. Here's what we wrote, the link to the sermon is at the bottom too if you're interested in watching that.

Matt:

While it's difficult to summarize our story, "endurance" seems to be a theme that the Lord has for us. We were married in 2010 and shortly after Chelsa was diagnosed with Multiple Myeloma, a rare, terrible, and "incurable" bone cancer. We were starting our life together, had just become pregnant, and recently began leading a small church counseling group for people confronting sin and suffering. 

Chelsa:

The past 7 years have been very hard...full of hospitals, chemo, cancer, and terrible side effects...so, so much more than we ever thought we'd go through! But, I think that it's because of our hope in Christ that we've been able to keep going. I don't understand why He hasn't healed me, why things often go horribly wrong, but his Holy Spirit really has given me hope to hold onto when things are at their worst. I know that He is with me--that He loves me in this inexplicable way--that even if the worst happens, I am His and He is mine (Isaiah 43:1) and I get to be with God for eternity.

Matt:

I'm consistently impressed and humbled by how Chelsa has endured some pretty horrible experiences while maintaining an incredible amount of hope, faith, positivity, and kindness (even toward the new nurses poking her with needles in the wrong places). She is an amazing reflection of Christ to me. Enduring this suffering with her has stripped away my illusions of having control, which has been a gift. I have spent much of the past 7 years on my knees begging, pleading, shouting, and cursing, but also expressing thankfulness. God has shown us some miraculous kindness through his people, his plan, and his spirit throughout all of this. There have been days when I have been a real mess, feeling like I can't say another prayer, but even those days He has been faithful to send family, friends, our community group, and our church leaders to lift us up in prayer (and sometimes bring us a meal or help us to pay a bill). Just a few weeks back, we were in the hospital and I received this text from a friend:  "You're not alone. I've been praying now for years for you two. Nightly I've been waking and I lift you up. I love you both. Thank you for being there for me."

Enduring all of this has taught me that the Lord works with subtlety. He is not a wish-granter to be commanded, and while it's hard to understand why he allows his beloved children to continue to suffer, when I take time to reflect, to look for his work in our lives, and to listen in prayer, his Holy Spirit is always faithful to fill me back up with the assurance of his hope. 

To be honest, he still has some work to do with me toward the "rejoice in our sufferings" piece. We are pretty ready for his healing touch and all things to be made right and ask you to join us in praying for this. We may have the opportunity to participate in a new clinical trial with the potential to heal Chelsa this coming year and ask you to pray specifically that it is successful, leading both to her full and complete healing, as well as a clear pathway for others to be healed of this disease.

Here is the link to the sermon—Pastor Matthias reads what we wrote at the very end:  

https://youtu.be/Pym0-9KWX-s

Regarding the clinical trial that we are seeking to get in to, here are some links if you would like to know more:

What is Car-T Cell therapy? (National Cancer Institute): https://www.cancer.gov/news-events/cancer-currents-blog/2017/car-t-cell-multiple-myeloma

NBC News story about the success of the Car-T Cell trial in China: https://www.nbcnews.com/health/health-news/car-t-cancer-approach-has-surprising-success-multiple-myeloma-n768516

One of the trials we are on the list for at Sloan Kettering in NYC: https://clinicaltrials.gov/ct2/show/NCT03070327?term=car-t+cell&recrs=ab&cond=Multiple+Myeloma&cntry1=NA%3AUS&rank=1

The other trial we are on the list for at Stanford in CA: https://med.stanford.edu/clinicaltrials/trials/NCT02658929

Now that I've got your attention...

Just wanted to give you all an update after my dr appointment today. I've already done some angry ninja kicks, so don't worry.

Matt and I were able to talk about all the options with my doc and there were 3 choices.

1. Continue with the low dose drug, Pomalyst, that I've been on for about a year. We looked at my blood work over the past year, and this drug has literally just helped me to chug along, but hasn't been effective enough to get my bone marrow functioning to a healthy level.

2. Try a new drug, Elotuzumab, see how I tolerate it and then add Pomalyst to the mix, hoping to clear out my bone marrow and hopefully give it enough room/time to get to producing blood normally.

3. Blast me with hard core chemo drugs to get my bone marrow functioning normally requiring me to be in the hospital for a month. ("the nuclear option")

Any drug is most likely to send me to the hospital, which sucks, but is sort of a necessary evil.

We're trying option #2 and I should have insurance approval at the beginning of next week. My guess is that I will start the new drug next week (an iv once a week) and probably end up in the hospital 9/8 or 9/9 :( Hopefully just for a few days.

Your prayers are very much appreciated as we navigate this! Specifically that I can tolerate this new drug and get my bone marrow functioning so that when my spot in a Car-T Cell clinical trial opens up, I can participate.

We are so thankful to have y'all in our lives!! Thanks so much for your encouragement and support!!

Important Decisions Ahead!

Matt and I recently met with my oncologist to discuss our upcoming plan for my treatment.

As you may know, since April I have been having a hard time -- pneumonia twice, three hospital stays -- all within 5 months -- it hasn't been fun. The good part of all of that is that I've gotten a 5 month break from chemo and steroids, which I desperately needed! My body feels like my own again, with the exception of needing blood and platelets almost weekly to stay moving. I've also had a ton of pain in my legs & without some sort of pain medication its been almost impossible to sleep. 

So, the time has come to make a plan. My M-Spike is most likely super high, so my doctor wants me to get a super high dose of some sort of chemo cocktail and stay in the hospital for a few weeks while I recover. I am not really excited about that, but I will have to do that or try the slow and steady chemo regiment that has worked in the past in order to get in to a Car-T cell clinical trial for an immunotherapy treatment. This has recently gotten a lot of press and is a very exciting and popular as it's the most promising treatment step toward a possible cure! 

However, because it's so popular and new, there are a lot of people interested in pursuing this option. I'm currently on a waiting list (I think 20 people ahead of me?) at Stanford and on a waiting list at Sloan-Kettering in NY 4-6 months out. My oncologist is also reaching out to a variety of other medical facilities offering trials. There are not many in the country -- none so far in Seattle. So, I need to do this hardcore chemo cocktail to get my blood levels back to a place good enough that we can hope for one of the trials to take me on. Historically, I can't do more than one type of chemo at a time without my body totally freaking out, so I'd prefer to try the chemo/steroid combination that I was last on to get my blood and bone marrow back in shape, but this may not be an option. 

We absolutely covet your prayers in all of this as we move ahead and we're more thankful then we can even express for all the love, support and encouragement we've received. We're not sure what exactly the Car-T Cell treatment entails, but are under the impression that it would be a big commitment with a lot of traveling, which is not great with no immune system. This could be a cure though, so we are eager to do this and start a new chapter! As our niece Quincy said, "Auntie Chel, when are you going to be done with all this cancer stuff?" Soon, Quince, soon, I hope.

*Also, a totally cool side note--I just had a pet scan yesterday for the first time since 2011, and by a miracle, have NO bone lesions. Big deal, seriously!! Myeloma basically eats away at your bones and forms tumors, that's how it's usually found. It just is crazy to me that I've been fighting this disease for almost 7 years and my body is still in such good shape. Praise God for that! So thankful!

Some bible verses that have been encouraging to me:

"But now thus says the Lord, he who created you, O Jacob,

he who formed you, O Israel: “Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. For I am the Lord your God, the Holy One of Israel, your Savior." 

Isaiah 43:1-3

"Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you.”

Deuteronomy 31:6

Back to Reality (A long overdue post)

And back to reality...ok, I know, this is looooong overdue.

It was such a gift to get to travel to New Zealand and Maui. I mean, seriously! You've seen the pictures, right?! But there really is nothing like sleeping in your own bed. And I was eager to get back to work at Constellation & Co. too. I just love that place.

We came back, I started getting into the swing of things again, every day feeling stronger and I even started swimming with my mom a few times a week. Getting healthy!! Or so I thought.

Checked in with my oncologist and found out some pretty shitty news. All this time, while I've been finally feeling at home in my own body again, the multiple myeloma has been growing. The stem cell transplant "didn't work as well as we would have liked" as my doctor put it. So, ALL that time in the hospital, losing my hair, basically throwing up multiple times a day for a month didn't achieve what we had SO hoped for. Such a bummer. SO disappointed. SO angry. SO sad.

If you remember, in order to get the stem cell transplant, my M-Spike (the cancer #) had to be close to zero. It got down to .08, which is good. Before we left on our trip, the M-Spike was at 2.1, which we thought was weird, but maybe a fluke. My oncologist wanted me to start chemo again, which felt like such a defeat and so our plan was to essentially drag our feet and wait until I absolutely had to. Unfortunately, that time came. When we got back from our trip, the M-Spike jumped up to 5.6, which sucks.

The good news in all of this is, yet again, God's faithfulness and timing. A brand spanking new drug for Multiple Myeloma was approved by the FDA at the beginning of this year and it's had super good results, with hardly any side effects. I started it in April and its been no big deal. I've just a little bit more tired, some fevers here and there and susceptible to getting sick. But it stopped working for me already!

It worked for a month and now the stupid M-Spike is back to 5.8. We met with the Dr today and there is another drug that I can try--something like Jazzhandzamib? ;) I'll probably start that in a week or so. I am so thankful that there is another option to try.

Prayers are much appreciated for this new drug to work! It's in the same family of drugs that I haven't done so well with in the past (ER/ICU trips...).

Prayers are much appreciated for complete healing!!

The goal is to stay alive until there is a cure. In the mean time, I will just do the next thing to stay alive which is this drug. When we can get the M-Spike close to zero again, the next thing may be an allogeneic stem cell transplant. This is with a donor's stem cells instead of my own.

Don't get me wrong. I was upset. I am in a better place mentally, emotionally and spiritually now, but totally still have shit days. My sweet mom sent me this (It's a 40 minute Tim Keller sermon & worth your time!) on the day that I got the bad news and it spoke to exactly what I was feeling. I hope it speaks to you too.

There and back again: New Zealand!

Leading up to Chelsa's Stem Cell Transplant, we decided that a victory trip would in order once she made it through all of the hard stuff and her immune system was recovered enough to travel. It became kind of a fun project to plan, particularly while we need to spend a lot of time resting and laying low.

In case you don't know Chelsa well, and are new to reading our blog, she LOVES Tokien's Hobbit and Lord of the Rings... especially Peter Jackson's movie versions. Whenever she doesn't feel well, which has been too often over the past five years, she puts on one of these movies (or one of the special feature documentaries) and gets lost in the adventure.

"You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to." ~Bilbo Baggins

All of that to say, there are reasons that we have not updated the blog recently... good reasons! For the past five months or so, Chelsa and I have been planning an adventure - complete with a 12-page itinerary binder - to MIDDLE EARTH!

"The world is not in your books and maps, it's out there." ~Gandalf

For anyone not in the know, Peter Jackson's Middle Earth is located in New Zealand. It's where he filmed both the Lord of the Rings triology from 1999-2000 and the Hobbit triology from 2012-2014. And while it may be on the other side of the world from us here in Seattle, we managed to find a pretty spectacular deal on Hawaiian Airlines. And, as Boromir knows: "One does not simply fly on Hawaiian Air without having an extended layover in Maui."  So... this is the story of our adventure, and how we found ourselves doing and saying things altogether unexpected... ;)

"Home is now behind you, the world is ahead!"

PART ONE: The North Island

Chelsa has been fighting a cold / sinus infection for 3+ months now. We were quite worried about whether the 16+ hour flight would be miserable for her given the pressure changes right up to the day we left. She was given some antibiotics and aphrin nasal spray that did the trick though. The flight was not bad, well, besides the child behind us who managed to scream for 18 of the 16 hours, reminding us that parenting is not always as fun as we sometimes imagine it to be. We left Seattle at 8am on Monday and arrived in Auckland (NZ's largest city) at 10:30pm on Tuesday. (Auckland is 19 hours ahead of Seattle). 

Auckland was amazing! #1) It was the end of Summer in New Zealand and the weather was incredible. #2) They have their own version of the Space Needle. (Called Sky City). #3) We stayed in Ponsonby, which is like a cocktail of Seattle's best neighborhood's mixed together, known for it's cute little boutique shops, hip restaurants, art scene and fantastic coffee shops all in these interesting historical buildings. We also stumbled onto this awesome little park with 12-monkeys-future-apocalyptic buildings buried in it... and a rope swing!

While we loved Auckland, it was also hard not to focus on our upcoming bus trip to THE SHIRE!  Yes... the actual Shire ...like where Hobbits live, Dwarves visit, and Gandalf puts on epic wizard fireworks shows.

This is the freaking BUS STATION in Matamata (aka Hobbiton). HOW COOL IS THAT?!

Welcome to Hobbiton! (Chelsa had just hit her head on that stone wizard hat chair) 

The road to the SHIRE!

"The road goes ever on and on."

The Shire is located in Matamata, NZ... which was a very rural sheep farming community prior to the Hobbits building their homes in the hillsides. We can now understand why those hairy-toed little creatures chose it. It is incredibly beautiful!  Like... straight out of a storybook beautiful.

"The sun was shining, and the grass was very green."

"In a hole in the ground there lived a hobbit."

"Good Morning! said Bilbo, and he meant it." 

"Is it nice, my preciousss?"

To be honest, there are quite a few more photos of me (Matt) than of Chelsa in this portion of our adventure, as she was quite hard to keep up with. 

"I thought up an ending for my book. ‘And he lives happily ever after,
till the end of his days.' " – Bilbo

"Sorry! We don't want any adventures, thank you. Not Today. Good morning!
But please come to tea - any time you like! Why not tomorrow? Good bye!"

I had moments of worry that she might find a hobbit home that she quite liked and would settle down with one of the little creatures... it seemed to suit her a bit too well. 

"It was a hobbit hole, and that means comfort!"

Now, I know that they say Hobbits are not real, and that all that glitters is not gold... but you guys... I'm pretty sure it's not true... LOOK at this place! They did reveal of few of Peter Jackson's secrets however... like that a few of the Hobbit homes have a twin... one built Hobbit-sized, so Gandalf, Chelsa or I would look quite large standing outside...

...while one of the twin movie-magic Hobbit homes looks the same, except for being built at 1.25 scale larger... so that actors like Elijah Wood or Martin Freeman would appear to be as small as the real hobbits that normally fit into these small homes. 

We were able to spend a bit of time at our friend Bilbo's house too. Interestingly, the large oak tree on top of his house is one of the only artificial pieces in the Shire... constructed entirely of steel and plastic with each of the 200,000+ vinyl leaves hand-wired onto the branches. Before filming, Peter Jackson noticed that the leaves had been faded by the sun and had each one hand-painted to match the green leaves of the other oak trees.

(Good thing we know how to party)

"No Admission except on party business!"

"I would rather share one lifetime with you than face all the Ages of this world alone"

We ended our visit to the Shire at the Green Dragon Inn of Bywater. This was the kind of place that you would expect to find travelers, but still seemed surprising just how international a place it is... as New Zealand isn't terribly close to anywhere (besides Australia). We encountered folks from all over the world. Alas, there were no rangers nor dwarves to be found... still it was an excellent place to relax after several hours of wandering the shire. 

"If more of us valued food and cheer and song above hoarded gold,
it would be a merrier world."

"Out of the frying pan and into the fire."

Chelsa WAS quite surprised to find that Gandalf (the Grey Wizard) had left his staff behind.. not sure if you can tell by the look on her face just how pleased she was about this...

"You shall not pass!"

TO BE CONTINUED...

Ugly Crying is the Sometimes the Only Response.

Today I was ambushed...in the best possible way.

I was working ('cause I'm well enough to go back to work!!) and my mom walked in with one of her coworkers. They were having their holiday lunch for work two doors down. She said, "Come say hi to everyone!" So, reluctantly I went, donning a fashionable mask to protect myself. I'm a little germaphobic still and saying hi to a group of people feels stressful...all those germs.

My mom was ambushed first.

 Anywho, I get to the lunch, expecting a quick hi and a sweet lady stands up and explains to me that every year, their department gives to a charity and this year and because of all that we've been through...stem cell transplant, 22 days in the hospital, still unknown hospital bills looming...they wanted to give to us! It's a good thing I had the mask on, because I was ugly crying like you wouldn't believe!! 

As I type this, I am still sort of in shock that this happened. We are blown away to say the least. We have some crazy expenses, but I don't really think about them because they seem super important for my health. My mom's super sweet and crazy generous coworkers covered my naturopathic treatments for a month. The out of pocket, crazy expensive IV's that I get every week are covered. I'm pretty sure that these nutrients and anti-oxidants have helped me to bounce back as quickly as I have and I am so thankful that we don't have to worry about the cost over the holidays!

Ambushed. Ugly crying. Blown away. Crazy generosity. Thank you SPU's Financial Aid Department, you're amazing, lovely people.

And my God will meet all your needs according to the riches of his glory in Christ Jesus. -Philippians 4:19

Every day is better than the last

“I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary. I wanted to live deep and suck out all the marrow of life, to live so sturdily and Spartan-like as to put to rout all that was not life, to cut a broad swath and shave close, to drive life into a corner, and reduce it to its lowest terms.”
― Henry David Thoreau, Walden: Or, Life in the Woods

Don't we all wish that we could say "every day is better than the last"... well, that is the update on Chelsa tonight. It has been about a week and a half since we escaped the hospital and each day we are celebrating little victories... many of which are related to food since she has hardly been able to eat anything for the past month and has mainly survived on toast and apples. A few recent victories have included:  eating an egg, eating potstickers from the neighborhood Thai spot, and recently eating meat for the first time in the form of a Trader Joe beef tamale.  The most exciting victory came yesterday in the form of going for a walk... OUTSIDE !!! ...in the beautiful sunshine we enjoyed this whole weekend. It has been very encouraging to have these little signs of progress every day.

We also had our first follow up with the doctor and got great blood test results! All of Chelsa's red cells, white cells, platelets, etc. are just about up to a normal range. Her doc even said that she can go back to work in a couple of weeks if she is feeling ready ...not full-time yet as her energy and stamina will still need a few months of rebounding, but she is still VERY excited to get back to coordinating the wholesale orders for all of the great letterpress stuff at Constellation & Co.  

*Note that despite the great counts, she still has to be VERY careful of exposure to germs right now. 

We were also able to drop off a new load of movies at the hospital's cancer center visitors lounge during our follow up. Honestly, we lost count, but if I had to guess, I would say that you all have donated close to 150 movies! WOW! ...and good ones too! It has been a pretty wide diversity... here's just a few titles: Cadillac Man, The Man With No Name triology, 40-year-old-virgin, Kill Bill 1&2, The House of Eliott, all of the Pirates of the Caribbean movies (I had not idea there were so many!), many seasons of the Friends TV show, some James Bond, several Jurassic Park, so many copies of Godzilla (?), some great b-movies.. Piranha, Don't Mess With My Sister, Tarantulas: The Deadly Cargo... and some more wholesome classics... like Radiant Fireplace 2. The patients and visitors at Swedish will have more choices than they know what to do with... I can envision them sitting by their television with that radiant fireplace blazing now.  ...we were also able to bring some thank-you gifts from Bakery Nouveau (our FAVORITE) for the nurses... have we mentioned how great they were? ...even got BIG HUGS when we dropped them off.


We also have to say THANK YOU to all who have brought Chelsa such amazing hats! She has a better hat collection than LL Cool J now! (He's the only one I could think of with cool hats)... from fancy Cashmere stocking cap, to hip hand-sewn library-patterned beanie, to cute headbands... she is owning the cute bald look, but conflicted with so many cute hat options to choose from now too. Mostly, she has just felt so LOVED.

So for the time being, we are laying pretty low at home, recovering well, and finding lots of small things to enjoy and be thankful for.
~Matt & Chelsa

Still loving this quilt -- hand-sewn by her friend Tracey and her talented crafty friends.

Day 22: GOING HOME!

Day 22:   We are HOME!!!!!!!!!!!!!!

Her counts were at 580 this morning! (500 was our goal for going home). Chelsa still has a long road of recovering her immune system, but being home, getting some uninterrupted sleep, getting some time with the cat... is going to make a huge difference. She is happier than I've seen her in quite a while. (And me too!) Don't want to make too big of a deal out of this... but...