Thursday, October 18, 2012

Shoshana: New Blog

And no, I don't mean "new blog post", as some do when they say "new blog".  There's a whole new blog, with its own posts (or at least, future posts), in store for you.

I decided to break out my regular posts about Shoshana's Leukemia into its own blog, so that it would not be interrupted by the other things that normally occupy this blog, assuming a degree of normalcy returns, or some new definition of normal, in which her care does not consume such a majority of my time, energy, and thought.

I may occasionally still post on this blog about Shoshana and her care, and I may occasionally link from here to there, or there to here.  My intent is not to draw a barrier between aspects of my life, but to make them more comprehensible and digestible to those who care to read about them. 

I would also like Elizabeth (and perhaps some others) to contribute posts to the Shoshana: Leukemia blog.

Without further ado, here is the link: Shoshana: Leukemia

As you read, please be praying for us, and especially for her healing.

Thursday, October 11, 2012

Shoshana: Intensive Care

The last few weeks have been a roller-coaster.  Shoshana was in the ICU when I last posted.  She has stayed there most of the intervening time, and is there currently.

Shoshana and Daddy
This is due to her respiratory condition.  One of the chemo drugs she was on--vincristine--caused vocal cord nerve damage, resulting in lots of throat pain and also vocal cord paralysis, to the point of preventing her from adequately breathing on her own--especially while asleep.  This morning I learned that Shoshana is the 6th girl on record who has had this kind of reaction to vincristine, and vincristine is an old drug.  Usually this kind of symptom clears up in a matter of weeks.  With Shoshana, it might take months.  I hope it's just months.

Mommy and Abigail with Shoshana
Abigail in the playroom on the cancer floor
Shoshana started her second phase of chemotherapy, 'consolidation', two weeks ago.  Thus far, only observable side effect of the new drugs has been nausea in the past couple of days.  Vincristine was scheduled for her as part of consolidation, but they will not administer it unless and until her current symptoms from it are resolved. 

The doctors kept expecting Shoshana to recover quickly.  She was doing pretty well, only on the BiPAP while sleeping at night or napping during the day--and not on the nasal cannula at all during her breaks.  They transferred her from the ICU to the cancer floor at the beginning of this week, hopeful that she could be discharged on Thursday (today).

Shoshana and Grandma playing with Play-Doh
To determine if she was ready to be at home, they stressed her system by having her sleep without the BiPAP for as long as possible one night (she made it until 5:00 AM, and then proceeded to sleep on the BiPAP for 11 more hours), and then the next night, they did a sleep study where they monitored her in half a dozen different ways while she slept.  She slept for three hours like that, at which point she was doing so poorly that they put her back on the BiPAP.  At 7:00 AM she spiked a fever, and was transferred to the ICU, where again she slept until 4:00 PM.  She was on the BiPAP pretty much constantly for the next day.

Wednesday morning, Elizabeth's mom Kristen called me and said she couldn't fill in for Elizabeth while she went to work for a few hours because she was sick (staying in the hospital with a kid on chemo with no immune system while you are sick is a no-no).  I called in to work, and came up to be with Shoshana.  When I arrived, Elizabeth told me that she, too, was feeling sick.  A few hours later, she called and told me that she had a fever.  She went to bed and basically slept all day, so I've been here at the hospital, and anticipate staying here until at least Sunday night.

Shoshana seems to be doing pretty well, considering recent events.  She is on the BiPAP only to sleep.  However, the doctors seem to be coming to terms with the fact that Shoshana's vocal cord damage is not going to clear up any time soon.  They would like to give her a tracheotomy, which would provide immediate and sustainable relief from her difficulty in breathing, and would not cause long-term damage.  (They had before suggested the possibility of removing part of her vocal cords, which would have permanent effects on her voice.)  They are confident that she will heal quickly, and that the risk of infection will be manageable, even while on chemotherapy.  They would wait to perform the operation until her blood counts go back up (they are currently at a low due to where she is in this phase of her chemo).

She was slated to return to the cancer floor today, but there isn't room ready for her at the moment, so we will spend one more night in the ICU. 

These past few weeks have also been rough on my family.  Abigail has been sick with an ear infection this past week, and thus not able to visit her sister, or be visited by her mommy, daddy or grandma.  Our dear friends Ian and Amanda have been taking care of her.

Elizabeth and I have had some pretty heated arguments, misunderstandings, distrust, and hurt feelings (as well as some burnout).  We are on the mend, and it has resulted in some changes for the better, but needless to say it has been very difficult on both of us, and trust and hurt feelings will take time and consistency to rebuild.

Last Thursday was Elizabeth's birthday.  We had been planning to go out to eat, but Elizabeth suggested that we also go swing dancing.  We did, and we both had a good time.  I definitely need to be getting more exercise (Elizabeth, on the other hand, had better stamina than she was expecting, thanks in part no doubt to joining a rec volleyball league).  I also threw together a surprise party with some of our friends on Sunday, although in order to get her to actually leave the hospital, I had to spoil the surprise.  I tried and tried other angles, but she didn't see any compelling reason to leave Shoshana's side.

Please pray:
  • That Shoshana would recover quickly from the damage to her vocal cords.  That she would respond well to treatment, and live a full life to the glory of God.
  • That each member of our family will be healthy and strong: Shoshana, Elizabeth, me, Kristen.
  • For me, that I would be given strength and endurance to do all that I need to do.  It has been difficult to be away from work so much lately.  I have become less dependable, and understandably have not been given many critical assignments as a result.  It can be difficult to stay motivated when you feel like what you've been given to do is not very important.
  • That Elizabeth and I, that we would be able to love each other and communicate and work together in love without misunderstanding or falling into unhealthy patterns of thinking.  That this difficult time would drive us closer together, and not be an occasion for destructive friction.
  • For Shoshana and Abigail, who miss each other and their parents very much.

Sharing berries

Add-a-cat app

Blowing bubbles: fun and theraputic

Also fun and theraptutic

Proud artist

Saturday, September 22, 2012

Shoshana: Respiratory Failure

A lot has happened since I last posted.  Shoshana has been in the hospital for the last two weeks.  Elizabeth has once again stayed with her almost 24/7.  I have been coming up in the evenings, often bringing Abigail so she can see her mommy for a couple of hours before going home with her grandma.  Elizabeth's mom has been taking care of Abigail most of the time, or leaving her with friends and coming to the hospital to help and relieve Elizabeth.

Shoshana has been in and out of the ICU a few times.  The cause of the pain in her throat, which we initially thought was her NG tube, and then thrush, has apparently been a very uncommon side-effect of vincristine, one of the chemo drugs.  Vincristine toxicity has caused her vocal cords to stop functioning properly, as well as be a constant source of pain.  We have had to increase her pain medication dose several times, and added new drugs to help the pain medication to be more effective.

Her vocal cords aren't doing a very good job when she swallows, which means that any liquids she has need to be thickened.

The worst part is that her vocal cords aren't getting out of the way for her to breathe.  They just sit there, closed; in the way.  The night after she was admitted to the hospital, she had to be intubated, which means putting a tube down her throat for her to breathe through.  Her diaphragm was not able to get enough air into her lungs to breathe, so her chest muscles had been helping out (in medical terms, this is known as stridor).  After this had developed over two weeks at home, her body was tired, and she would stop breathing in her sleep.

Shoshana intubated
She was intubated for about 48 hours, after which she was put on CPAP, which is a mask worn over her nose that applies a constant pressure.  The pressure pushes out on her throat, widening the passage between the vocal cords.

This has worked, more or less, ever since, though now she is on a BiPAP, which allows increased pressure while she is inhaling.  She can be off of the BiPAP for an hour or so at mealtimes.  She isn't able to eat much at once, because her swallow muscles wear out.  She has been getting formula (and breastmilk from mommy, and vegetable juices from grandma) through her NG tube.  She has still lost a lot of weight.  The most activity she has been up for is sitting up in bed for a few minutes at a time.  I miss our bike rides.

Meanwhile, she had been getting steroids.  The original idea behind the steroids was that the laryngal dysfunction might be caused or exacerbated by swelling, and therefore anything that would reduce the swelling would help.

No swelling had ever been observed.  In fact, when we first brought her in to the emergency room, they stuck a scope down her throat, and didn't see any swelling.  Elizabeth had been skeptical of the large doses of the steroid ever since she had been intubated:  prednisone wasn't helping (and that reduces swelling), so why would dexamethasone?  Additionally, the dexamethasone was preventing Shoshana from getting a good night's sleep, which was the very thing her exhausted body needed desperately to recover.  Additionally, with such high doses, coming off the drug would cause swelling, since her body would have compensated for its presence.

After discussing this with the doctors, Elizabeth was surprised to see that Shoshana was still getting the high doses of dexamethasone!  She went mamma bear on them.  I'll let her tell that story.  After about a two day standoff, everyone was pretty much back on the same page, and she is being weaned off of the steroids.

I find I've been taking and posting a lot fewer pictures of Shoshana.  I like to capture the happy and hopeful moments; the smiles and giggles.  We didn't get any for a while.  As she has become a bit more stable over the last few days--relatively so, she's still in the ICU--she has been able to play with Abigail when she visits (although Abigail is prone to pulling on lines and anything else she can get a hand on, so we need to keep her out of reach).  She definitely misses Abigail when she hasn't seen her in a while, and asks for her.  She has been able to talk to people about things other than her pain and needs, and play with toys and sticker books in the last few days, which is an improvement over the previous couple of weeks or so.  There haven't been any bike rides, but I'll take what I can get.

My brother Josh's 3rd and 4th grade class wrote letters to Shoshana, and I was able to show them to her.  I also received a video from a friend's three-year-old daughter describing a letter and drawing she was making for Shoshana.  Shoshana really appreciated these things, and she seemed to especially enjoy them because they were from kids.   They brought me to tears, especially the statements of trust in God expressed in the letters from the kids in Josh's class:  the same kind of faith God expects from wise-to-the-world grownups.

Please keep asking the Lord to heal her vocal cords, restoring their function from nerve damage and relieving her of constant pain.  (Luke 18:7)

We definitely enjoy visitors.  Both to see Shoshana, and visitors for Mommy and Daddy to have a taste of normal social interaction and distraction.

We have depended on the meal plan set up by our church, to supply us with two or three dinners a week.  I have been going from work to the hospital, and then home to sleep, and Elizabeth is living in Shoshana's hospital room.  The burden taken off of us by these provided meals has allowed us to focus on Shoshana's needs and care.

Please ask the Lord to supply us and the doctors with wisdom, especially Elizabeth, who is in the front-line position of coordinating all of Shoshana's care over the long haul.  She and I need wisdom especially to know when to defer to the doctors' expertise, and when to put our foot down.  Shoshana is very blessed to have such a capable and knowledgeable nurse at her side and on her side so faithfully.

Monday, September 10, 2012

Still Waters

I just spent about half an hour eating my dinner in the ICU Family Lounge with a pair of men from Djibouti, who poured me a glass of juice and practically dumped encouragement in Christ into my soul.  One of the men I had seen before with his family in the ICU.  His six-year-old son has had a tumor on his head for two years.

It was refreshing to see and hear the peace and joy that we share in Christ gush out in broken English, and it was encouraging to me in ways that I know my soul needed.  Rough times may be ahead for our family, but I know that we belong to the Lord.  We have a heavenly Daddy who cares for us, a Savior and Redeemer who has suffered through worse than this, and knows the full extent of temptation, having endured it all without giving in, and a Spirit who lives in us, and is one with the Father and the Son.  He knows our circumstances and pain, and He will speak His word into our hearts, full of precious promises.

How good is the God we adore!
Our faithful, unchangeable Friend,
Whose love is as great as His power,
And knows neither measure nor end.

'Tis Jesus, the first and the last,
Whose Spirit shall guide us safe home.
We'll praise Him for all that is past,
And trust Him for all that's to come.

Saturday, September 01, 2012

Shoshana: Induction Chemotherapy

The first month of Shoshana's chemotherapy treatment is called "induction".  The goal is to 'induce' remission, such that the cancer cells are not detectible in her body.  This is not to say that the cancer will be totally gone.  A single cancer cell left in her body can and will cause a relapse.  Once remission is achieved, she will still have 2 more years of lower-level "maintenance" chemotherapy, to make sure that any remaining leukemia cells don't stage a comeback.
Playing in the waiting area at a clinic visit

There have been good days at home and bad days.  A good day is when Shoshana is comfortable enough to laugh, smile, be silly, and play with her sister; to be herself.  A bad day is when she doesn't want to move or be touched:  she simply wants to lay on the couch and watch movies.  We had been having fewer of the good days lately.

Bubbles: a good day

A friend gave Shoshana a pixie cut, to lessen the impact of chemo-related hair loss.

Last night, Elizabeth sent the following to our church prayer chain:
Tuesday marked the start of week 3 of treatment. According to the doctor the 3rd and 4th weeks are the most difficult both for the child and for the family due to pain, hair loss, crankiness (due to the steroids), and exhaustion. The most prominent issue right now is pain. She is experiencing a combination of sore throat from the constant crying combined with thrush, jaw pain from one of the chemo drugs, bone pain from the leukemia itself, and generalized muscle achiness from the combination of steroids and chemo. At this point Shoshana is taking the maximum allowable pain medicine dosage at home and if her pain continues to increase then we will have to hospitalize her for pain management. In my first few years as a nurse working on a post-op unit I learned a lot about pain: uncontrolled pain or frequent flare-ups cause a cascade of stress hormones to release inhibiting healing, and even feeding cancer. So even though I don't like how droopy her eyes are, I do not support giving her the max home dosage and allowing her to cry for two out of the four hours in between doses. Last night, for the first time since her hospitalization, she woke in the middle of the night and asked for her pain medicine.

All that to say, please pray for her pain to be controlled, for us to have patience and continued energy to serve Shoshana's needs (not necessarily her demands ;)).
A smile.
Reading with Grandma

This morning we decided it was too much.  Shoshana once again woke up crying in the middle of the night, and even after her morning dose should have been in full effect, she was obviously uncomfortable and in pain.  We called ahead, and headed up to Seattle Children's Hospital.  Since it's a weekend, we had to go to the emergency room.  If we could not effectively manage her pain at home, she would need to be admitted to the hospital.

We were there all day (there was a lot of waiting), and the conclusion was this:
  • Despite Shoshana still constantly indicating that her throat is her most acute source of pain, it does not look infected.  The thrush seems to have cleared up.  They took some swabs, and will run some cultures to see if there is anything else.  It may simply be irritated by her feeding tube, and aggravated by her crying.
  • She was still in pain, and the current dose was not cutting it.  We are going to try introducing another medication specifically for nerve pain, but that will take a few days to build up and kick in.  In the meantime, we will once again up her scheduled dose of oxycodone (pain meds).
It's a path forward.  Again, we appreciate prayers to the effect that Shoshana's pain will be effectively managed.
Back at the hospital

"Daddy, I want soup with noodles!"
Please also pray for Elizabeth.  This whole process has been rough on her.
  • Spiritually:  She has always had a hard time understanding why God allows this kind of thing to happen.  This incident has dredged up the old patterns of thinking and feeling.  She finds it difficult to weigh in the providential mercies that God has given to us in the midst of this crisis.  She knows they're there, but they somehow don't seem to register.
  • Emotionally and physically:  I have returned to work, except for scheduled clinic days.  Elizabeth is the one primarily taking care of Shoshana and Abigail most of the day, every day.  She has always had a hard time being strictly a stay-at-home mom.  The demands of the task have increased, and her opportunities for social, emotional, and physical outlets have decreased.  She is a strong person, but she has a tendency to power through tough times, which does not work well for the long haul.
We are thankful to be blessed by:
  • Kristen, Elizabeth's mom, who has spent almost every day taking of Abigail while we're at the clinic, or helping out in general with the girls and around the house.
  • A woman from our church, who is spending some time showing Elizabeth some healthy (and delicious!) cooking ideas.  
  • Encouragements and concern, expressed in person, on Facebook, and in the mail.
    Pumpkined out after big, long day

Wednesday, August 22, 2012

Shoshana: Outpatient

Shoshana was discharged from Seattle Children's Hospital on Sunday afternoon.  This was a day or two earlier than we had been expecting, but a welcome surprise.  She was off of her IV in the morning, so she and I got to ride bikes through the unit halls together (previously, I was always wheeling her IV cart and minding her line).  Once we got home, everyone went down for a much-needed nap.

Bikes and toys

Daddy's ride

The new accommodations we need to make for Shoshana's leukemia and treatment are twofold:

First, her immune system is suppressed.  Elizabeth and I are not at all germophobic, so this is definitely an adjustment, but one that we can certainly make.  Shoshana can no longer go out in the back yard with the goats (and their poop on the ground).  We need to pasteurize the goat's milk before she drinks it.  We need to be careful with bacteria in foods:  certain kinds of foods are out; others simply require more care or preparation.  No sharing dishes or utensils, no buffet foods, no probiotics (normal yogurts and non-soft cheeses are fine, as long as they are from pasteurized milk).

We also need to be extra careful not to expose her to anything:  visitors can't have been sick for three days, or exposed to anything at home.  We can't take her out anywhere with crowds of people.  This includes shopping, playgrounds, the fair, church, etc.  Her white blood cells won't be able to respond to an infection, so a fever is the only sign that we will have if she gets one.  We need to monitor her closely, and be prepared to take her to the hospital immediately if she spikes a fever.  For the most part, these are pretty manageable.  Not very convenient, but manageable.
Shoshana shows off her new beret.

Second, she is on a regimen of medications.  This is turning out to be difficult for Shoshana.  When she was in the hospital, most of her medications came through her IV line, though not all of them.  Some she needed to take orally.  She's too young to swallow pills, so this means she got a liquid syringe squeezed into her mouth.  Initially at the hospital, she was okay with this.  However, some of these medications don't taste very good.  After taking a particularly bitter pink medicine syringe, she proceeded to throw up her entire stomach contents.  Her nausea was probably not entirely due to the flavor of the medication, but she immediately associated it with that flavor, and all syringes of medication (especially pink), even the sweet-tasting ones.  She insisted that the medications were hurting her; they made her sick, and they were all yucky and vomit-inducing.

She managed to get her medications down on Sunday night.  Monday morning was a battle.  Monday evening, she again emptied her entire stomach (a rather large helping of delicious beef and lentil stew made by her grandmother).  As best I can tell, what made her vomit was not the food or medication in her stomach.  It was her panicked reaction to being made to swallow "yucky" medicine.  The battles were a drain on everyone, but especially on Elizabeth.  

Tuesday was our first outpatient clinic visit, and we brought up the problem with the doctor.  She suggested that we could get pills instead of liquids, and crush them and put them in different things to see what would work.  Some of the pills were easy enough to conceal in food, others not.

Wednesday morning was the last straw for Elizabeth.  She did not want to fight Shoshana for every dose of medication.  Shoshana was starting to become suspicious of everything that we asked her to eat.  She would refuse to eat what we offered, and make demands for other things.

Elizabeth had been advocating for a nasogastral tube since before our clinic visit on Tuesday.  She had had nothing but good experiences with it in her nursing career (she has not worked in pediatrics), and we had seen many other children in the hospital with n-g tubes.  I agreed that we should call and ask to come in to the clinic (again) today to have a tube inserted.  We did our best to explain to Shoshana what the tube was, and that its purpose was so that she would not need to taste any of the medicines.  Nevertheless, she freaked out.  The tube cause her discomfort, and she refused to be consoled.  She screamed and cried for hours.  She was finally able to get some sleep, and is eating some noodle soup as I write this (praise the Lord).
Shoshana with her n-g tube, finally comfortable enough to eat.  Still not very comfortable.

Please continue to pray:
  1. Comfort and peace for Shoshana.  That she will be given understanding and courage.  So much has been asked of her, and she has taken so much in stride.  No three-year-old should have to go through this kind of thing, but she must.
  2. A solution to the medication dilemma.  We are hoping that Shoshana will adapt to the presence of the tube, but it may take a few days, and in the meantime it affects her swallowing and breathing.  We would prefer not to put Shoshana on anti-anxiety medication, just so that she can take her medication.
  3. Comfort and peace for me and Elizabeth.  Shoshana's leukemia is as much or more of a life-change as having our first baby, and far less anticipated.  We are very thankful for those who stepped in to care for our 8-month old Abigail, and our household needs during the hospital stay.  
Things that would especially help us at this stage:
  1. Childcare for Abigail, our 8-month-old, while we take Shoshana on her many clinic visits.  The first month is the most intense.  We have already been in twice this week, and we expect to go in tomorrow for a blood transfusion.  We are told that three to four times a week is normal.  Elizabeth's mom Kristen has been doing this (as well as helping us at home).  We would like for her to have breaks now and then.  (Also: see below on my work situation.)
  2. Meals.  A meal plan is being arranged through our church.  The clinic visits are exhausting, as is dealing with a frightened, cranky three-year-old on steroids (literally).  Worrying less about meals means we are more available to meet Shoshana's other needs.  There are a few considerations for bacteria (and we want to avoid pesticides on produce), but other than that, we are not too picky.
  3. Breaks and gofers:  There are errands that Liz can't take Shoshana on because of her compromised immune system.  I would also like to take Liz on a date at some point.  This is more complicated than simple babysitting, since whoever looks after the girls needs to be brought up to speed on what to watch for, and how to respond. 
Abigail with Grandma
We have been so thankful and amazed at the support we have been getting.  Elizabeth especially has been encouraged by the comments and posts friends and family have made on Facebook.  (So have I.)  We have received care packages for Shoshana with crafts, coloring books, stickers, etc.  We have received gas cards and grocery cards (and coffee cards) some from people I hardly know, some from family or church friends, and some from old friends who live far away.  We are keeping a box with the personal notes and cards, so that Shoshana can look through them as she gets older.  Some of them made me cry.  [Context: I cry easily.]

We can't always accept visitors, and there are some sanitary restrictions (see above), but we definitely appreciate visitors:  both visitors Shoshana's age, and grown-up visitors.  It's nice to have grown-up time when we can get it.

I have taken last week and this week off of work.  I don't have very much sick leave, but I do have some vacation time built up.  I'm not sure how we're going to deal with all of the clinic visits this month.  I can get family leave time off work, but I won't get paid unless I have vacation or sick leave to cover it.  If someone else can take Abigail, Elizabeth and her mom can be with Shoshana at the clinic.  At this point, I don't want Elizabeth to have to bring her alone.

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