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!