Sunday, April 27, 2014

Spring Update

It seems like it has been forever since I (Tim) updated this blog last November.  It feels like we're living in a different world.

Tracheostomy

Shoshana's trach tube came out last September, but there was still a hole in her neck leading to her trachea. It was supposed to close up on its own, but I think she had gotten into the habit of pushing air (and whatnot) through the hole, so it seemed whenever she breathed hard, or coughed, or got upset, it would gurgle a little bit. 

Since it wasn't closing all the way on its own, they finally stitched it shut.  I think that was in March.  Anyway, it's gone now.  All that's left is a little scar at the bottom of her neck.

Meds & Chemo

Shoshana's care is so insanely simple now!  Her only pain medication is Gabapentin (twice a day, for neuropathic pain), and she is still on Maintenance chemo, which means she takes a pill or two each weeknight in order to keep her immune system suppressed within a certain range of lab-based values.  She also has a 5-day course of steroids once every month.  Two days a week she takes and antibiotic in order to prevent lung infections that kids in her situation are prone to.

Yes, that probably sounds like a lot to most of you, but from our perspective, this is a cake walk.

Shoshana is scheduled to be done with Maintenance in December.  After that, she gets no more chemo!  This is both amazingly awesome, and nerve-wrackingly scary for me.  There either is or is not cancer hiding away in Shoshana's body somewhere, waiting to come back, or there isn't (or rather, there will or won't be in December).  The only way we will know is to take off the training wheels and see what happens.

Shoshana hasn't been able to have as aggressive a regimen of chemo as the protocols typically provide, given her extreme reactions to some of the chemo drugs.  On the other hand, since her body doesn't seem to clear out those drugs very quickly, she may have had more exposure to them than is typical.

Either way, the situation, and we ourselves, are in the Lord's hands.  That is comforting, but lately it's been more of a struggle for me to die to myself and let God give me new life, day by day. 

Minor Complication

At the moment, Shoshana's only issue is her digestive system.  Her stool is almost always very soft, which means her digestive system is having trouble.  We have been giving her various supplements and vitamins to help her out, but so far there is no magic bullet. She's not putting on much weight, but she keeps growing taller.  Considering her genetics, this is not surprising at all.

Family Matters

Shoshana is getting a little brother any day now!  Elizabeth's due date is May 20th, which, given her previous track record means that she could go into labor any day now.

Elizabeth is ready to be done being pregnant.  She's had a particularly rough go of it this time.  Depression hit her particularly hard, and in her present state her body is prone to injury, uncomfortable, and very often in pain.

Please be lifting us up in prayer:

  • For complete healing of Shoshana's leukemia
  • For resolution of Shoshana's present gastrointestinal difficulties
  • For a safe and healthy delivery of our baby boy
  • For day-by-day grace, which we need in order to rely on the Lord in every situation rather than trying to wrest it into our own control

 Pictures








Swinging with Daddy

Silly Daddy


With Grandpa Harris


Silly Faces

Video chatting with Grandma and Grandpa Zwicker in a box

Coloring with Mommy

Sampling the Superbowl Guacamole

Sledding

Feeling the baby move

Hoberman Sphere

Bath time!

She really likes soup with noodles

Swings

Enjoying the fruits of having 'helped' make cookies

Visiting the Reading Boy statue at the Renton Library

Reading with Daddy


Our goat gave birth to two kids





The girls got a bunk bed

Dancing!

Stylish umbrellas and matching raincoats


Twirling in a dress


Sunday, March 23, 2014

Deifying Food

Our journey with food continues to evolve along with Shoshana's recovery. When cancer cells were running rampant throughout her bone marrow and blood stream we did everything in our non-medical power to help her body heal itself, avoiding foods and toxins that would only make recovery more difficult. I even refused to allow her to be fed Pedialyte during recovery from a bout of diarrhea because I didn't trust the brand. Instead, we fed her a dilute orange juice concoction thanks to the dietitian on her case. For the year that she had a feeding tube we made her a homemade "formula" with whole, organic foods rather than using the whey protein and sugar (2nd ingredient!) formula provided by the hospital which caused her heart rate to slowly but steadily increase to the point which the physical therapist did not feel comfortable playing games with her and also caused severe, caustic diarrhea.

Throughout these last 18 months we have done the best we could with the resources we had. Now that things are a little calmer we have more time to contemplate our long-term lifestyle plan. One of the things that has been tumbling through my mind is "why us?" and "why her?" Many of my family members have already had experience with some form of cancer. I, myself, also dealt with a case of "pre-cancerous cells" in my thyroid which threw my body chemistry off so badly I nearly had to drop out of nursing school. For that reason, we had already implemented many of the major "anti-cancer" lifestyle changes such as removing all toxic cleaners and self care products from our home, eating a wide variety of organic vegetables, and growing as much of our own produce as possible. To have our first family case of childhood cancer is frustrating on so many levels, especially since we already have a relatively "clean" lifestyle.

Which gets me thinking: how much more can and should we do from here on out? It would be lovely to have an easy answer of "if only this then that" but life is not that straightforward. I remember being shocked to learn at the very beginning of our journey that leukemia is one of the few cancers that has virtually no links with diet. Other than pockets of incidence around nuclear disasters and heavy metals in the soil, it touches every continent, every people group, every culture, every neighborhood virtually equally. Even the Amish people have nearly the exact same amount of risk as the general U.S. population!

Recently I came across an article called "Food Is Not Your God" which summed up my thoughts on the whole foods movement very well. "I’ve sensed something very disturbing in the Whole Foods World…it’s something that has bothered me to my very core and I’m speaking out against it. FOOD IS NOT OUR SAVIOR."

I would be nice to be able to say with confidence that if we only consume these things in this proportion, we will live long, healthy lives. But the world doesn't work that way. According to the Bible, "Against its will, all creation was subjected to God’s curse. But with eager hope, the creation looks forward to the day when it will join God’s children in glorious freedom from death and decay (Rom. 8:20-21, NLT)." The Earth itself is cursed and the whole situation just sucks! But over time working so diligently to learn about the links between diet and cancer began to focus my focus from God to me and my efforts. "If it were true that eating whole foods would keep you healthy and free from tragedy, then a drug addict would never carry a baby to full term…and a one-Coke-per day elderly man wouldn’t live until the ripe old age of 95. Food cannot save you – Jesus can save you (Food Is Not Your God)." 

Besides that, there are so many contradictions! Grains are bad, grains are good, butter is bad, butter is okay as long as you know the cows it came from, all red meat is bad, take two tablespoons asparagus puree morning and night, etc. etc. ad nauseum. Clearly, when we eat well with whole foods, lots of vegetables, responsibly grown meats, we feel better. We are generally healthier. But we are not always entirely healthy. Food is not the answer to all our troubles. Jesus is.

Much like the author of the blog I linked earlier, I will continue to learn how to live and eat responsibly for the glory of God but I need to refocus so to give Him all the credit for our good lives, not the food we eat. There are a few principles that we will continue to live by such as avoiding known toxins, eating organically when possible, making the majority of our food at home, and balancing meat and vegetable protein sources. 

Thank you for continuing to walk through this journey with us. It is not over but we are finally getting to the point where we sometimes forget her appointments!

Just for fun, I'd like to share a delicious recipe I found earlier. I made plenty for leftovers as well as the freezer. In general it's hard for me to find yummy freezer meals that aren't full of meat and I want to be prepared for this baby coming up. If my previous pregnancies are any kind of a predictor, we only have about six more weeks until we get to meet little Judah!

Leek Asparagus and Herb Soup
I like my soup with a little more texture so I did not puree the potatoes along with everything else so it was a rich and creamy stock with small potato chunks. I also spiced it a little more with some cumin and turmeric. Even the girls loved it!

Irish Cream and Chocolate Silk Pie
And for something on the other end of the health spectrum and in recognition of the recent St. Patrick's day, this recipe is from Wanna Be A Country Cleaver created by a friend from high school. 

Saturday, November 16, 2013

Maintenance

It's been a while since I last posted on this blog, so I'm going to summarize without a whole lot of detail.  With the reduced load of chemo, Shoshana's hair has begun to come back, to the point where she (barely) can have pigtails.

Medical Stuff

 The biggest news is that her trach came out at the beginning of September!  There's still a little hole that oozes and bubbles a bit, especially when she gets upset. 

With the trach out, we lost our home care nursing, but that's because her care has gotten an order of magnitude simpler.  We reduced her medication schedule to three times a day, and we are in the process of weaning her off of some of the medications.

Without the trach, Shoshana has been able to eat more and more on her own.  We have recently been going for as long as we can without the feeding tube.  This means that she needs to swallow all of her meds on her own (even some pills, which she has gotten very good at), and also that she needs to be consistently eating enough food to get enough nutrition and calories for her growing and healing body.

We still make her formula several days a week even with the tube out, and she drinks several cup-fulls during the day, in addition to eating solid food.  Since it doesn't have to go through a food pump, we can be a bit more flexible with the ingredients, which otherwise might clog the machine.

Dexamethasone

One issue that we've had is Shoshana's steroid cycles.  Once a month, she gets five days of intense dexamethazone.  For the first few cycles in the maintenance phase, our night nurses noticed that Shoshana's heart rate would be dangerously low while she was sleeping, several times during the night.  The nurse would rouse her, and her heart rate would go back up, but this meant that Shoshana wasn't able to complete her deep sleep cycle.  Each month during her steroid cycle, it would be worse.  We finally got a cardiologist appointment, and after experiencing the same symptoms again, we had to stop the cycle one day early and put her on a 24-hour heart monitor.

After that, the doctors reduced her steroid dose by 25%.  In the latest cycle, we haven't see nearly the same heart rate nose dives.  The issue with this is that Shoshana is already not getting one of the usual chemo meds at all (vincristine), and now she is getting a reduced dose of dexamethasone.  This is a bit scary for me, because it potentially decreases the effectiveness of the maintenance chemo, the effect of which should be to tease out any cancerous cells still left in her body and then wipe them out.  Our working theory is that Shoshana's body doesn't process through these classes of medications as quickly as typical people due to her particular genetic makeup, and she is therefore exposed to the drug the same amount as another person would be, since its effect on her body lasts longer.  It's better for her to take this risk than for her heart to stop in the middle of the night.

My comfort is that I trust the Lord, who holds Shoshana in His hands.  Not a hair falls from her head that He doesn't know about (and there have been many), and she is even more precious to Him than she is to us.  Whatever happens, I know that He will not abandon us, and that His plan for Shoshana and for Elizabeth and me and Abigail is ultimately wise and kind and good. 
 

Other Stuff

With the trach out, we can travel!  More than an hour away from Seattle Children's Hospital!  We flew down to Southern California, and spent two weeks visiting friends and family (and Sea World, Disneyland, Knott's Berry Farm, and the beach).  It was a blast, and Shoshana had a great time.  I'm glad the girls got to spend time with my (Tim's) parents and grandmother especially, as well as their cousin Connor (who can run circles around the girls, which is saying a lot). 

We also spent two days at Great Wolf Lodge (an indoor waterpark resort) as an early Christmas present to our local family (as well as some friends who got to come too).

Specific Items for Prayer:
  • That Shoshana's treatment will be effective, despite her taking a reduced chemo regimen.
  • For the safe arrival of Shoshana and Abigail's new baby brother or sister, who is due to arrive next May!
  • On that note, please pray for Elizabeth (and Tim!).  Pregnancy makes Elizabeth's medication for depression much less effective, which makes things more difficult all around.

Photos

As it's been a while, there are lots of these.






 










Hiking!






Trach out!




Puyallup Fair





Tacoma Children's Museum



Sea World




Cousin Connor
Jessie Hat (to go with her boots)





After Disneyland, day 1





Grandma and Great Grandma

Disneyland, day 2
















Trick-or-treating at Pike Place Market


Uncle Josh



Great Wolf Lodge


First Ambulance ride.  Shoshana was displaying some strange symptoms late one night, and was also having trouble breathing to the point where we didn't want to drive her to the hospital ourselves without oxygen equipment.



First pigtails in over a year!