Thursday, August 16, 2012

Shoshana: Leukemia Thus Far, and Ahead

Let me explain.  No, there is too much.  Let me sum up:

Shoshana when she was first admitted to the Emergency room
Our daughter Shoshana, who turned three in June, was diagnosed with Leukemia on Friday.  She had been having pain in her bones at night, and we took her to the doctor, suspecting it was arthritis, the blood test that provided the diagnosis was from those tests.

We admitted her to the hospital immediately (Friday evening).  She developed a fever while in the emergency room, and was immediately put on antibiotics.  Over the next few days (and continuing), her tests would show rapidly declining blood factors.  Basically, we detected it just before it got very, very serious.

A visit from Abigail
The type of Leukemia she has is ALL, which is the most common type for kids.  Leukemia is a particularly tough cancer to eradicate, and so Elizabeth and I both agreed that she should immediately start chemotherapy.  The 'cure' rate for kids with ALL is 90%. (Cure means remission and no relapse within five years.  I'm not sure what the relapse rate is beyond that).  Shoshana's leukemia was caught early, and so we are hopeful that hitting it hard (but not too hard) with chemo will eradicate it from her body.

Roaring brachiosaurus
It was still a tough decision.  It's not easy to pump your child full of poisons that kill rapidly-reproducing cells.  She kind of needs some of those, you know, to grow up.  It breaks my heart that anything could make Shoshana be any less herself.  We were not offered the option of a cancer-free Shoshana.  There was no such box for us to check.  I'm still not sure how this will affect her adult life.  I do want her to have an adult life if at all possible, and the rest of her childhood, and I know that she is in the Lord's hands.  He wants her to be every bit of herself that she possibly can be too, and He can and will make her so, despite cancer (which He hates more than we do), if she will let Him.  

Silly Daddy
Please pray for Elizabeth and me as we point her to Christ.  May He work in and through our hearts, in and through this difficult time.

The Lord is good.  She was asymptomatic (except for occasional bone pain) when admitted.  The detection at this stage was a complete fluke.  She has no cancer cells in her spinal fluid. She has had some rough times, where she has been uncomfortable or in pain, but she has also had times every day when she is her normal, infectiously happy, silly, serious, adventurous, adorable self.  

Uncle Loren

Snuggle time with Mommy

Little Mermaid bike
 Her pain is in the same places as it was before (her thigh bones, mostly), leading us and the doctors to speculate that the chemo is working on those cells which were previously crowding out her healthy bone marrow space.  Part of her therapy is a steroid, a major side effect of which is that she is prone to extreme irritability when agitated or in pain.  It's hard to see our sweet little girl transformed in this way, but the effect is temporary, and it is not her real personality.  We are still holding her accountable for her behavior, so that she will not develop bad social and relational habits.


Worn out
She has had several friends and family members visit.  She loves visitors.  We have found that distraction works very well for her pain and irritability (she has always been a socialite), and can break up the monotony of the day.

Elizabeth and I have been blessed by so many friends (and even strangers) praying for us, and serving us in other ways.  Kristen (Elizabeth's mom) has basically taken over the care of our 8-month old, Abigail, enabling us both to focus on Shoshana.  Our nephew Josh is staying at our house and milking our goat twice a day, enabling us to both be here more and focus on Shoshana.  Several friends have brought us meals.  This has freed us up so that we can both focus on Shoshana.  Are you noticing a pattern here?

Grandma and Abigail
Things that help Shoshana cope are:

  • Visitors, particularly friends her age, especially if they bring interesting toys to play with, but we also have toys here, and she *loves* to ride the wide variety of bikes and cars that are available to the kids (and their visitors) here.  Her immune system is compromised:  *don't* come if you are sick in any way, or if you have been exposed to someone sick.
  • Movies: Shoshana has a stack of DVDs that she loves to watch.  Mostly Disney cartoons and How to Train Your Dragon.
  • Abigail, stuffed animals, and her blanket
  • Fresh fruit (especially berries):  Shoshana loves fruit.  Too much pain will overcome her desire to eat, but when she's hurting a little, eating something tasty can help distract her from the pain.  Also, it's very healthy, which she needs especially right now.  Please make sure any fruit is well-washed.
    Blueberries and Strawberries
  • Her blanket and her doggy.  She has a special green blanket and a well-loved stuffed chihuahua, which she has named Parsley, in honor of our friend Amanda's dog.
  • It goes without saying, but I will say it anyway: her Mommy and her Daddy.  Liz has stayed with her every day and slept with her every night.  I have taken the week off work to be here every day.  I tried sleeping in a fold-out chair the second night, but determined that I sleep better if I drive home, and it enables me to shuttle things back and forth, and to attend to and observe household needs.  Freeing up Mommy and Daddy helps Shoshana.  As I have said, we are very thankful for those who have helped in this regard.
  • Activities.  A friend of mine who is not in town asked how she could bless Shoshana.  My response was to ask her to provide Elizabeth with ready-made activities and crafts to do with Shoshana.  She loves sticker books, and pre-cut decorating crafts.  She loves Dora the Explorer, Avatar: the Last Airbender, Disney princesses, painting, Play-dough, etc.  I am thinking particularly of the time after she is discharged from the hospital.  Her treatment will be mostly outpatient after the initial stay, and she will continue to suffer the side-effects of the medication at home.  Hopefully it won't be as extreme, but she will at times still feel sick, be in pain, and be extra irritable.  She will also not be able to go outside as much, or go out in public or visit friends as much.  Distractions (especially laughter) are the best medicine, with no negative side-effects.
  • Music Therapy
  • Music.  A music therapist came by on Wednesday, and Shoshana LOVED LOVED LOVED it.  She played the guitar and sang, while Shoshana accompanied her on the drum.  They made up a song together about an elephant named Horton, who was as huge as a bird, and visited his animal friends.  Shoshana was in tears when it was time for her to go.  Thankfully, some friends were arriving at that very moment.

Foot high-five
The doctors, nurses, and other staff at Seattle Children's Hospital are amazing.  Both in working with Shoshana, and in dealing with us, I have been impressed by their concern, care, knowledge, communication, and professionalism.  I'm very thankful that Elizabeth is a nurse, and is able to natively absorb all of the information coming our way, but I have been able to understand and participate in it all as well.  The facilities and atmosphere are amazing for kids and for families.  There is enough room in the rooms for us to stay by Shoshana's bed.  There is refrigerator and frreezer space designated for our use.  There are free laundry facilities, and a Family Resource Center with plenty of space and chairs for comfortable socialization and relaxation.  (Elizabeth is even scheduled for a massage if we are still here on Tuesday).  There are bikes, trikes, and cars for the little kids Shoshana's age, there are video games, foosball tables, etc for teenagers.  The hallways are all attractively and interestingly decorated.  Shoshana's favorite spot to bike to is a castle painted on the wall where, as she says, The Beast and Belle live.  Everything I have heard and experienced tells me that this is the best place for us to be, about half an hour from our house (in good traffic).

Riding with Rebeca

We have so much to be thankful for.  I am not afraid of losing her:  it is not even the most likely outcome, as I feared when I first heard the word "leukemia", but I know that we are doing the best thing for her, and the Lord will still be faithful to us, even should He take her from us.  We are in His hands, and they are good.

That was longer than I thought it would be.  This is the first time I've sat down and written it all out.

Abigail needs to visit her Mommy and Daddy too


  1. Tim, this is great! Can I share this link with the many people on my page who are praying for all of you? It does a great job of sharing the process and what is helpful to all of you. Thanks, Kimberlie

  2. Thanks for sharing these details, Tim.

  3. "We are in His hands, and they are good."


  4. Praying for you all and I'm sending love to you, Elizabeth, Shoshana and Abigail. : )
    Romans 15:13

    Bethany Harvey

  5. It is a good thing that words fail me, my vision is blurred right now. My precious grandson, so healthy, is sleeping in the next room and I am saying "thank you Lord". The same Lord has trusted you with more than I can bear to even read about. He knows. He loves. He cares. He heals. He strengthens.
    We continue to talk to Him, as you continue to be there for Shoshana.
    Our sincere love, Darrell and Kathy
    August 17
    Proverbs 17:17 A friend loves at all times.
    ( He is our true, unfailing friend )

  6. I've shared this on my Tumblr and my Facebook. My Tumblr has tens of thousands of followers. The word is getting around! Praying for you! I love y'all..:3333333333333333333

  7. Love and prayers!

    Beck's mom

  8. Thank you for sharing such a personal, heart-wrenching, but well written experience. You don't know me, but I followed the link here from Amanda's Facebook page. I first met her when she was just a couple of years older than Shoshana is now. She had the same exuberance I see in pictures, videos, and the description of your precious daughter. I will pray for Shoshana (and her parents!) as often as the Lord brings you to mind. How long is her treatment anticipated to take? When will you know if the chemo did the job it was supposed to do?

    May the LORD bless you and keep you; may the LORD make his face shine upon you and be gracious to you; and may the LORD turn his face toward you and give you peace. (Num 6:24-26)

  9. We are so touched by what you all are going through. Know that we are praying for healing for little Shoshana's body; strength, patience, health, and wisdom for her dear parents(along with other needs we haven't even thought about!?), and, most of all, that His will be done and this whole experience bring much glory to God. It is so encouraging to hear your story and see how God has already worked in the early diagnosis, the wonderful hospital, doctors, help, etc., and your trust in Him. HE is ABLE!!
    Love and Prayers, Ted and Marie

  10. Thanks for this update..been out of town for almost two weeks.
    Thankful that the LORD intercedes even when we are out of touch/town~
    God bless you all!

  11. Hi! I just found your blog. I just wanted to comment on the fresh fruit. You might want to check with your daughter's doctor to make sure that it is ok for her to have. I know that sounds weird, but I've been on chemo twice now and both times I was not allowed to have fresh fruit as they told me that you can never wash all the bacteria off and that my immune system (which would normally fight that bacteria) wasn't strong enough to fight it. I'll be praying for your daughter...chemo is no fun!