Monthly Archives: April 2013

“Normal”

Emily now has hair! It is coming in thick and wavy - and Chrissie loves to put it in a mohawk, because there is now enough to do that! - and then she dyes it!

Emily now has hair! It is coming in thick and wavy – and Chrissie loves to put it in a mohawk, because there is now enough to do that! – and then she dyes it!

This will be a quick – I hope! – blog post.  I/Grammie have had it jumbling around in the back of my mind for several weeks now, which already shows how not-quick this post is, and I have now left it until the morning of my drive down to Tulare to visit my #3 daughter, Jennifer, and her family.  So saying, this post will not be smooth nor polished but I am hoping it will give a glimpse into how this family’s life has been going.  In the midst of any one’s – child or adult – cancer treatment, there is a normal life that still has to continue – and this is their “normal” life.

. Chrissie and Jason home-school their five children – even Emily gets some learning – through an awesome home-school program called Classical Conversations.  It’s a national organization with separate groups scattered throughout various towns and cities.  The families in each group meet together on Tuesdays and then teach their kids at home the rest of the week.  Chrissie has been Director of their group for the last two years.  Doing that has allowed her to pay for her kids’ tuition for those years and she has excelled in doing it – however, it is also a big time commitment and a lot of work.  She has loved the work and thrived on it but she has also spent many hours fretting that with all of the time that Emily takes, she hasn’t been able to do as good of a job as she would like.  After much prayer and soul-searching, she finally decided to step down at the end of this year and turn the reins over to someone else.  It was a hard, hard decision for her but she feels that now she’ll be more available for time with her family – and she is happy about that.

The homeschool open house was last Thursday (4/4/13) and Emily just had to help one of the older kids play the piano! He was very gracious to let her "help" him!

The homeschool open house was last Thursday (4/4/13) and Emily just had to help one of the older kids play the piano! He was very gracious to let her “help” him!

. Grammie has also made a big change – I retired a month ago – at the end of February.   I wanted to be more available to Chrissie to help.  Next time Emily is hospitalized, I can stay with Chrissie and not have to wake up at 4:30 and sneak into the hospital bathroom to get dressed and then tip-toe out to go to work!  ‘Course, I never had to pay for parking because it was too early for the garage parking gate to be down – but you have to give up some things!

. Emily is now in Maintenance – with daily chemo pills, which Chrissie gives her at home and intermittent hospital visits for chemo infusions and spinal taps.  For five days out of each month, Chrissie’s whole family “gets” to be wrapped up in Emily’s five-day course of steroids.  That week is blessed with a clingy Emily who doesn’t want to be put down – Emily talking at the top of her voice range (where DID they put that mute button on her?!) – and a very demanding Emily (in a very loud voice, of course.)

. Car troubles still occur.  Their van died several weeks ago – to the tune of an immovable transmission that will cost more to repair than the van is even worth  They are now managing in a borrowed car – thank you to Liz and Jeff, many times over, for doing that for them – but they need a van or something large enough to hold the whole family at one time.  They could use your prayers – and any ideas – along those lines.

. My/Grammie’s new normal is that I always travel with a camping mat in the back of my 4Runner, just in case Emily gets admitted – and I have a “Go” back in the back of my closet that has it’s own set of toiletries always there so that all I have to do when Chrissie calls and says they are on their way in to the hospital, is throw in some clothes and take off.  Chrissie and I each have our own set of loungey black pants – soft enough to sleep in but stylish enough to look good when you are still wearing them all the next day while the doctors and nurses come in and out of the room!  We both always end up with those packed in our bags – as she, of course, also has her own “Go” bag.

. Chrissie will call me every-now-and-then to talk about something she has looked up online.  Any mother would be doing the same thing – trying to see where her baby’s treatment and life are headed.  Emily is in a high-risk group so that adds further concern.  Recently, a little girl whom Chrissie was following on another blog, died.  That hit Chrissie pretty hard.  All you can do is try to be there for her and hold her and cry – and then you go somewhere and cry yourself, because this is your baby, whose baby is so sick, and you are  crying for both.

. Emily has grown 1 1/2″ in the last year – and has gained a pound!!!  She now weighs more than my cat! She weighs 23 pounds – and is currently no longer at the zero percentile on the height/weight charts – she’s now at 0.2%!  She is frugal with clothes, though, as she can still wear the outfit that Bapa/Grandpa and I gave her two Christmas ago.  You have to look at the pluses!

This is my rather large Bear, lounging in the dog's bed!

This is my rather large Bear, lounging in the dog’s bed!

. The family has three boys in Little League, which is another reason Chrissie wanted more time at home.  Between games and practices, it requires a lot of sitting for hours on bleachers so that when each kid looks up from his game, he sees a set of eyes, just watching for him.  Those are the important things in life.  We were at one of the games on Monday – day before yesterday – and as I was watching Emily go to the trash can to throw some little bit of trash away – she, of course, had to go to the furthest bin away from us(!) – it was obvious that her long, skinny legs do not have the strength of an almost-thre-year-old.  She runs and dances and twirls and goes up-and-down slides but her legs are wobbly and her gait is a little off, due to chemo side effects.  Sometimes she tells Chrissie that her legs hurt.

At yesterday's game - snuggling with Emily, who finally got tired and cold. Momma, of course, is very intent on the game, which Ethan's team won!

At yesterday’s game – snuggling with Emily, who finally got tired and cold. Momma, of course, is very intent on the game, which Ethan’s team won!

. Easter was celebrated with going to church together – and then some time with family at Bapa and Grammie’s house. (Wish I could figure out how to post pictures side-by-side like Auntie Plum did – so you’ll just have to put up with them spread out in a line.)

The whole clan!

Jason, and Chrissie – William, Emily, Sophie, Ethan, Adam

Fairy Emily, in her frothy dress, checking out her Easter-egg-hunt bounty ---

Fairy Emily, in her frothy dress, checking out her Easter-egg-hunt bounty —

Reading to Bapa.

Reading to Bapa.

Auntie Danielle and Joah.

Auntie Danielle and Joah.

Auntie Gaby and Uncle Jay.

Auntie Gaby and Uncle Jay.

. Jason and Chrissie are continuing to try to help and support the Childrens Miracle Network Program, which has helped them so much.  Chrissie called me yesterday, all excited because she had been personally asked to speak at an upcoming program in Livermore.  They are obviously involved in Emily’s care but are also trying to use this time and their own experiences to reach out and help others.

. Emily seems happy and is more often now than before feisty and outgoing and playful and loving.  She could bring a smile to your face in a heartbeat.  She is tied to her Momma, of course, and God gave her those long, skinny arms so that she could wrap them all around Chrissie’s neck to pull her closer.  To Emily, this is “normal.”  Emily was lying down on Jason and Chrissie’s bed one night and Jason made a comment to her that one day she wouldn’t have to have her Broviak catheter tubes anymore (the long tubes that are permanently implanted into her chest so she can get infusions and blood draws without constant IV sticks) – and Emily just looked at him and said, “I don’t ever want my tubes out.”  To her, this is normal.  It is not, of course, but we – her family and extended family – have all had our lives changed where “normal” is not, but it is —

So this has been a brief jump into their lives —- this post is a bit disjointed and will not be reread before it is posted(!), but Grammie still has a pile of stuff on her bed that needs to be crammed into suitcases so that she can get going down the road.  And, in reality, our lives are a bit disjointed now anyway – and “normal” is in quotes because it is, but it isn’t —- and life goes on —

Please continue to pray for this family – Emily’s treatment and recovery – a “new” van for them —– And we will  continue to pray for you – for without all of the friends and family and home-sch0ol families and medical personnel, who are also now family, we would have all collapsed long ago on this journey.  Thank you —