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

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!