Done with Chemo!

She's Done!

Yesterday I gave Shoshana her last dose of chemo!  I don't think it's hit me yet.  Maybe it will hit me the first time we take an overnight trip and I realize that we don't need to pack any meds.  Maybe it will be the next time she's in an especially cranky funk, and I'll have to remember that it can't be the steroids, because she won't be on them.

It's been such a regular part of our morning and evening routine for so long that I hardly think it's strange anymore to be donning protective gloves to hand my daughter poisonous pills out of a bottle, which she then proceeds to put into her body.

Nope, it really hasn't hit me yet.

It took a long time to wean Shoshana off of Gabapentin, which she had been taking for nerve pain.  The wean was slow, but a few weeks ago, we finally were able to ditch it altogether.

School

Shoshana started kindergarten in the fall.  We were initially hesitant about her stamina, since being on chemo means that she needs naps on most days.  She seems to be doing fine, although she's only going three days a week (but that's another story, which doesn't belong on this blog.)

Anyway, Shoshana absolutely loves school.  Elizabeth and I might possibly want to homeschool at some point, and if we did, we would definitely need to be connected to a co-op so that Shoshana could connect with friends.  She has always been super social.  I remember when she was a baby, if it had been too long since she had been out among other people Elizabeth would ask me to take her to the grocery store or something so that she would get some social interaction.  She always came back in a better mood.

The Past

The past seven months have been kind of a blur for me.  Losing Judah at the end of an especially difficult pregnancy was only the beginning of the whirlwind of family drama and disruption.  We were hoping to sell our home at the end of November, and the buyer had to back out, and we learned that my job will be moving out of the state (without me) in the next year or so.

In all this, the Lord has been faithful, and there have been many little blessings along the way.

Shoshana had a bone marrow biopsy this November.  They did not find any leukemia in her bone marrow.

The Future

As I mentioned in a previous post, Shoshana is done taking chemo, but she is not out of danger of relapse.  The training wheels are off.  This next period of time she will be regularly monitored for any sign of the cancer coming back.  If there is still a cancerous white blood cell anywhere in her body, it could go right back to multiplying out of control, and we would essentially be back at square one.

Our hope and prayer is that this doesn't happen, but we will have to proceed into the future, and take each day as it comes, trusting that enough grace will also be given to overcome whatever trials are in store.

Shoshana's hair is now long enough that she can have ponytails!  And despite the stress of chemo on her body she has been growing like a weed in the night the whole time.  Abigail is three, and the girls have been interacting so well together (overall).  I'm so happy that they have each other as sisters, and I'm so happy that we get to be their Daddy and Mommy. 

Prayer Points

• Please give thanks that Shoshana has made it this far, and that she is doing so well.
• Pray that her treatment will have been successful, and she will not relapse.
• Ask for encouragement and grace for our family as we move forward together.
• Please also pray that we will be able to sell our house soon.

Awareness

September is National Childhood Cancer Awareness Month.  Now you're aware.

The more people that are aware of a problem, the more potential for fund raising, and the more funds there are available for research, the better the chances that successful treatments are developed.

Of course, every month, I am hyper-aware of childhood cancer.  Here's one choice I have made year-round that I believe will make a small but real difference in the big-picture scope of childhood cancer.

I choose to have a portion of the money I spend at Amazon.com donated to the Ben Towne Foundation. 

I changed the bookmarks in my browser that link to www.amazon.com to link instead to smile.amazon.com.  It's a simple change, but this change means that a small percentage of the money I spend on things I would buy anyway go towards pediatric cancer research.  (We have an Amazon Prime account, so we use it to buy every-day things all of the time with free 2-day shipping.)

You can point Amazon Smile at any one of thousands of charitable organizations.  I chose Ben Towne Foundation because I believe in their vision.

What they do is to extract T-cells from a patient, and reprogram them to recognize cancer cells and kill them [Update: I have since learned that they target all B cells, not just cancerous ones].  (They do this using neutered HIV virus, since it can infect T-cells.)  The patient's own modified T-cells are multiplied in the lab, and then re-introduced into the body.  Once back in the body, they do what T-cells do, except that now they have the special ability to seek out and destroy cancer.

This sounds so futuristic, and yet they are doing it in clinical trials with real patients right now.  And they are succeeding!  These patients are the kind with multiple relapses; the otherwise hopeless cases: now suddenly cured (hopefully in perpetuity, since the reprogrammed cells will stay with them).  The future is now, or at least, it is nearer than we thought.

Would you like to do the same?  It's easy.  Just go to smile.amazon.com.  Once you sign in to your account, you can search for and pick your charity.  Remember to change your bookmarks (or type it in manually).  

That's it.  You're done.  The future will arrive ever-so-slightly sooner.

I'll take a cure for cancer over flying cars any day.

Camp Agape NW 2014

No news is good news, and Shoshana has been doing great!

She's almost weaned off of Gabapentin (for her neuropathic pain), and she will be finished (!!!) with chemo on December 17th of this year.

Camp Agape

A few weeks ago, the whole family (including Elizabeth's parents) got to go to Camp Agape Northwest.  Camp Agape is hosted by the Philoptochos Society, and is designed to support families with kids battling cancer, and give them a break.  Both of our girls had a blast.  They are paired with one-on-one counselors who engage with them, and play with them all day, all week, doing whatever the kid wants to do, among the camp's various activities and crafts, or in some cases, supporting the imaginative whims of the child. 

The parents are given somewhat of a break from the kids, and from the daily grind.  I (Tim) found it a bit hard to simply let our girls go off and play without me.  The girls and I love to be with one another, and so we were able to spend some time together.  I brought some board games and card games, and of course I introduced some of the counselors to Dominion after the kids were in bed.

The camp was a great time to get to know some of the other local families with kids battling cancer.  There were a lot of kids with leukemia, but also some with other cancers.  Most of the kids were in maintenance or monitoring, since you can't really go to a camp like this if you're in the middle of intense treatment, so we also had that in common.  Some of them we had seen or met while at Seattle Children's Hospital at one time or another, but of course when we were there we had a lot to worry about, and not too much time to slow down and connect.

There was a little bit of sharing.  The moms got to go out together one day, and the dads another.  I felt like it would have been better if the parents had been able to spend more time together in a structured way earlier in the week, since the guys dinner was on Thursday, and after that there was only one more full day of camp, but it was good nonetheless.  We'll need to put together a barbecue or something, in our copious amount of free time this summer (Ha!).

I think that the camp was well named.  Agape is unconditional love, and that was the love that we felt from the organizers, staff, and counselors.  No matter what situation we were in, we were showered with love, and nothing was expected of us, other than to receive it in blessing.

Going Forward

Stopping chemo in December will be wonderful and at the same time the thought of it makes my stomach turn into knots.  Chemo is dreadful, but it is also what is killing the cancer if/when it pops up from one of its indeterminate number of hiding spots in Shoshana's body.  Chemo is the training wheels.  Are there still leukemia cells lurking about, waiting to multiply in a few months?  In a few years?  We don't know.  We can't know.  We can only wait, and watch, and hope, and quietly put the matter in God's capable and loving hands. 

The worst part is, that if she does relapse, the standard response would be to attempt a bone marrow transplant.  The preparation for a bone marrow transplant is a month of chemo to completely wipe out the immune system.  The best tool available to accomplish this is (you guessed it) vincristine, the very drug that almost killed Shoshana, and devastated her nervous system.  We do not think that she would survive.

Hope

Trust can be a difficult thing.  We have no promise that Shoshana will be with us in five years.  Of course, none of us have a promise that we will ever draw another breath.  That's the way the world works, and that's how our lives have worked lately.  We thought that we would have a healthy baby boy in our arms in a matter of days, and then suddenly, he was gone.

The rule of this world belongs to one who is out to kill, steal, and destroy, and in it we have known death, loss, and brokenness.  We choose to put our hope in a God who in the ages to come will show us the riches of his grace in his kindness toward us in Christ Jesus, who has defeated sin and death.  Someday, when He makes all things new, we will have our baby Judah.  I hope and pray that regardless of how long she is with us in this life, Shoshana will come to share in the everlasting life of Christ. 

Pray With Us

1. Thank the Lord for his church, who has shown us love throughout our difficult times, including the Philoptochos Society at Camp Agape.
2. Praise the Lord that Shoshana has been doing so well this summer, and ask specifically for her continued health, healing, and protection from leukemia relapse.
3. Lift up our whole family in grieving for our baby boy Judah Daniel who died during early labor in May.

Pictures