Childhood Cancer


Back in 2008, I met a dear friend while taking a ride in the Children’s Hospital elevator in Seattle, WA.  Josie looked me directly in the eye and said, “Bone Marrow Transplant.”

I answered, “Yes.  How did you know?”

She was with her daughter Kelli.  Josie told me that she was in my shoes the prior year.  Kelli had survived and was back for her “year 1” doctors appointments.  Josie and Kelli have continued to inspire me to put one foot in front of the other when I felt I couldn’t.  I am so thankful that my loving Savior brought them to me.

Josie asked if Lydia could be a part of her fundraiser this year, “Faces of Hope.”  She has had made an inspirational quilt and I could not be happier for my daughter to be a part of it.

Here is Josie’s letter and photo of the quilt:

This year we celebrate many milestones with our childhood cancer survivors.  We are featuring TWELVE of our warriors on a quilt with all proceeds going to RELAY FOR LIFE and the AMERICAN CANCER SOCIETY.

We have put together a quilt in honor of these kids and are taking donations to benefit the AMERICAN CANCER SOCIETY and Relay For Life.  For every dollar donated we will put your name in a drawing for this one of a kind quilt.

We will be drawing the winner on March 15, 2012.

We will also be drawing for a crocheted afghan in the colors of purple and white.

We understand that with the tough economic times that some people will not be able to donate and that is ok.  If you could pass this on to someone you know that might be willing to donate even a little bit, that would be appreciated.

Every dollar we raise will go to help finding a cure for cancer.  If it were not for the researchers and the doctors and nurses, our children would not be alive today.   There is still more research to be done and we hope that every dollar we raise will bring us that much closer to a cure so that no other parent will ever have to hear the words “your child has cancer” and that no other child will have to endure what our children have gone through.

Thank you for supporting RELAY FOR LIFE and the AMERICAN CANCER SOCIETY.

Team For The Kids

** Checks may be made payable to : AMERICAN CANCER SOCIETY

You can mail your donation to:
Josie Ritter
8192 Harrington Lane NE
Moses Lake, WA 98837

My family and I go up to Children’s Hospital every Christmas Eve to pass out presents to the oncology patients that are currently hospitalized.  When Lydia was hospitalized during Christmas, it was such a joy to receive presents from survivors  it gave so much hope…hope in Christ.

On December 11th, I would like to invite you to come together to pack small clear containers with our family for the hospitalized children here at Children’s.  During the hustle and bustle of Christmas it a special time to share with our children (and our own minds) that there is far greater need than our own.  We will have a time for writing our cards to the kids, prayer for the kids, and celebration of Jesus’ birth and finished work.

If you are interested in joining with us:

·        Let me know by leaving a comment of emailing me: leapnlizzie@gmail dot com.

·        If you would like to participate, but can’t come in person, let me know and you can send the box to me to pass on to a child.

PACK

·        Choose a boy or a girl.

·        Choose an age range

o       2-5

o       6-12

o       13-18

·        Get a new small clear container (about shoebox size) Germs are very important to keep away.

·        Fill you box with gifts!

GIFT IDEAS

TOYS
small cars, legos, dolls, kazoos, harmonicas, small Etch A Sketch®, toys that light up or make noise (with extra batteries), Slinky®, etc.

SCHOOL SUPPLIES
pens, pencils and sharpener, crayons or markers, stamps and ink pad sets, stickers, writing pads or paper, solar calculators, coloring and picture books, etc.

HYGIENE ITEMS
toothbrush, toothpaste, mild bar soap, washcloth, etc.

OTHER
Hard candy and lollipops (please double bag all candy), mints, gum, T-shirts, socks, ball hats; sunglasses, silly bandz, necklaces, bracelets, watches, flashlights (with extra batteries)

A PERSONAL NOTE
In a separate envelope, you may enclose a note to the child and a photo of yourself or your family. Please consider adding a gift card for gas or food for the family ($10-$25).

These kids are very sick, but aren’t any different from the kids you know.  They come from a variety of backgrounds.  Cancer touches all ethnicities, all monetary classes, and all faiths.

DO NOT INCLUDE:
Used or damaged items; out-of-date candy; hair products (kids loose their hair during treatment); medications or vitamins

Please pray for these children and their families during this very tough time.

The night before the big neurosurgeon appointment, I was awakened over and over with bad dreams.  I was eaten up with fear.  Fear that I KNOW was not from God.  I got so scared of relapse.  Losing my precious one.  David was awesome and prayed that God was in control everyday no matter what.  I was able to find rest and peace in God’s abundant gift for our lives.  I am so thankful for my three children.  They are all God’s.  What a blessing that He has entrusted them to me.

I wanted to let you know that all went well with the neurosurgeon on Thursday.  He said she looked great and that I shouldn’t worry about her ankle being Cerebral Palsy.  He was thrilled that her range of motion was in “normal” limits.  Next year she will have a CT Scan to check her ventricles and eventually another surgery as she grows taller.  This is a good thing.  Cousin Kim reminded me to look forward to the next round of doctors that look at the long term stuff.  She is so right!  Lydia is growing up and doing great. 

We had some time to stretch our legs while we waited to see the neurosurgeon so we went up to 4 Tower to visit the nurses.  They were stunned that this healthy little girl was RUNNING around happy and playful.  Little Lydia has come a long way baby.  It brought me so much joy to see there eyes swell with joy.  I was filled with a big “thank you” for all they do.  On my way out, I mentioned that they could always pass my information on to any other parent with a baby going through treatment to give them hope.  Then I realized that there was a baby in a families arms standing right beside me in the hallway.  I had the pleasure of meeting Brenon and his family.  Please pray for this sweet two month old baby.  He has a mass on his liver and was going in for a bone marrow aspiration.  I hugged his mother and she held me tight.  She said that she was thankful that I had stopped by and that Lydia brought her hope.

God is amazing.  I am not sure how to give His hope, but to just be.  Living in the moment and loving Him is all I know.  Thank you for your continued prayers.

It’s the little things in life that are so exciting.  Being “home” from the hospital is totally great for more reasons than I can express to you.  The number one thing being that the family can be together.  The other huge reason to celebrate is that Miss Lydia doesn’t have to be hooked up to a pump.  At the hospital, she is typically hooked up to a pump most of the time with only a few breaks.  This time, she got larger breaks from the pump, because she was only there to receive antibiotics, just in case one of her cultures showed an infection.  Thankfully she was infection free and only had to stay the 48 hours necessary.  

Since being home, we have been able to all go to the park to fly kites.  The wind in Seattle is so nice, that it almost always is perfect for kite flying.  The kids really enjoy it too.  Even Lydia is able to grasp the smaller kite’s handle and participate in the fun.  Today she napped through the fun, but got fresh air, none the less.

Friday, she goes in for her day 80 work up.  This is a VERY important day in the scheme of things.  She will get another bone marrow aspiration (looking to see if her donor marrow is still 100% and looking again for any lurking leukemia cells.)  Once again, I feel good about these tests and the results.  Please continue to pray for NO LEUKEMIA and for continued peace.

I don’t know yet if she will have any GVHD (graft verses host disease) biopsies or not.  She is tapering from her steroids and we don’t yet know if she still has any problems on her skin and in her tummy.  Her skin still looks like perfect baby skin.  As she is tapering from the steroids, her appetite has gotten worse.  This was to be expected.  The steroids make her so hungry.  Also, she has spit up a couple of times.  This could be just normal baby actions or it could be the GVHD.  I really want her new bone marrow to accept her body as it’s own and not hurt her.  If the GVHD flares up, she will be on steroids long term.  Yucky.

I have been feeling pretty spiritually dry.  This week in clinic, they were talking to us about going home, home next month.  I started to cry out of fear.  I really want to go home, but the idea of taking care of Lydi and my boys all by myself freaked me out.  It will be hard enough being at home without the comfort of the hospital being one block away.  I have complete confidence in the professionals that would care for my precious baby at home, but I feel so overwhelmed.  I keep reminding myself that God has held my hand this far, He is not about to let go.  

I was speaking to a mom the other day about her sweet baby getting ready for transplant.  She was saying how she feels so unprepared…emotionally, spiritually, and physically.  Me too!  I don’t feel like I can pray right, read my Bible enough, ect.  I am so thankful for God’s grace and for Christ to intercede for me.  I trust that He cares for Lydia and will defend her to the end.  One day she will die and be with Him, so will all of us, but even while she is on earth, she is God’s and worth defending.

OK, it is really late, and you know I go on and on when it is late.  Thank you for your continued prayers.  By the way she is still breathing extremely fast.  She had a CT Scan of her lungs, which looked great, so no worries right now, but I really want her to SLOW that breathing down.

Thanks again,

Liz

Today is the first day of the rest of my life…and that feels good.  Re-entry has been great.  Lydia had a very good week and Forth of July.  She has jumped right into a normal nighttime schedule of sleeping and is being entertained by her brothers.  She is taking her bottle more and more.  I hope to get the feeding tube out soon.  I am giving most of her meds by mouth to motivate our doctors to know that she doesn’t need it for her medicine.  By the way, you would be shocked to see how many medications she takes AND that she is taking them like a pro.  It takes me close to an hour in the morning to prepare them and administer them to her.

So if you would like to hear a basic schedule of the day it goes like this:

8AM Meds and add formula to feeding tube

8:30AM More meds

Noon More meds and add formula to feeding tube

2PM More meds

4PM More meds, disconnect feeding tube (Lydia is free of tubes for 4 hours!!!)

8PM Hang her IV Fluids, hang her feeding tube, and more meds

10PM Disconnect her IV fluids, flush her line, and more meds, add formula to feeding tube

2AM Add formula to feeding tube

6AM More meds, add formula to feeding tube

And back to 8AM

As I noted earlier, Lydia gets bottles on demand around the clock.  She also is required to have her temperature taken twice a day and receive a bath.

As you can imagine I am quite exhausted a lot of the time, but being with my family really lifts my spirits.

It is all worth it.  Knowing that Lydia is on the road to recovery is HUGE.  Most of her medicine is to get the new marrow to be content with Lydia’s body.  And the rest of the medicine is in response to the side affects of the anti-rejection medicine.  Many of these medications could be stopped in the not-so-far-off future.

Today I was struggling with thoughts of possible long term side effects Lydia may be left with.  I feel really blessed and have peace of Lydia’s remission, but thoughts of side effects bounced around in my brain.  I questioned all the choices I made about her treatment and was afraid.  Immediately I thought “He gently leads those who are with young” and felt much better.  God is in control.  I have to give in and give up all of my control of the situation at hand.  

OK, I have a stream of consciousness starting here, so connect the dots if you can.

So, yesterday afternoon I was trying to take a nap, all the while thinking of everything that needed to be done around the apartment and all the things that my family was currently doing.  I wanted to be spending time doing anything other than napping, but I really needed a nap.  I started to think about how a lot of times I have to just give up and fall asleep.  I rarely like to give in to sleep, but it is one of my favorite things to do!  Then I thought about faith.  Sometimes, I just have to give in and believe God.  I want to believe Him, but I get caught up in circumstances (especially the little ones, AKA ankle biters).  That is when I realized how giving up control and choosing to trust Him, well, it hurts.  But when I do, it feels great…peace like a river.  

Lydia is in remission.  God is so much bigger than cancer and He is so much bigger than side effects.  Lydia is in His hands and I will continue to go where He leads.  

Thank you for your continued prayers.  I am forever thankful.

Sometimes I get to caught up in expectations of life.  I have done this since I can remember.  Sometimes my expectations end in disappointment and sometimes they are filled with contentment. 

During the last two weeks, I have realized that I was pretty much living on expectations…When certain tests were going to be performed, what would happen during them, how Lydia would perform.  I had an idea of what was expected at any particular time and if anything diverged from “the plan” I was at my limit.  I have never been stretched in my life.  I felt like the finish line was in view and anything that wasn’t in my tunnel, messed up the whole plan.  I didn’t even realize what I was doing or why I was SO stressed until an anesthesiologist diagnosed me.  Funny, huh?  I am glad that doctors and nurses take such good care of the parents too.

After I became aware of being focused on my expectations, I realized that I wasn’t living for HOPE.  Hope and expectations are such different things.  Hope puts things in perspective.  Hope in Christ which includes His trustworthiness, being incharge, being loving, being who He says He is.  This hope includes His awareness of the desires of my heart. 

So all this said, I was listening to some music this afternoon and have a new themesong for the day.  It comes from Van Morrison’s albumn Tupelo Honey.  The song is called “(Straight to your Heart) Like a Cannonball”.  It is a fun and lighthearted song about waiting for the sun to shine.  It just reminds me that tough stuff happens, but to think outside of myself.  God speaks to me through Van often, I just love that.

Today Lydia and I left the hospital for the first time since she was admitted!  We left on a two hour pass.  It was the best two hours in weeks.  We walked over to the Ronald McDonald house and played with my gorgeous sons!  Lydia and the boys were elated.  I am hopeful that we may be able to spend more time “home” soon, but for now I will cherish what I have.

 

Day 20

I miss you all so much.  I am ready for a normal life again.  The past few days Lydia has been doing so well, but I haven’t really heard from God.  I am so exhausted that I don’t even know how to approach Him in a meaningful way.  I have been pretty grumpy.  I am glad God loves me in spite of myself!

Lydia is doing well.  Her mucusitis is fading, but a cold has come in its place.  It is not holding her back much.  Please pray that she gets over it quickly.  Her counts are fluctuating, which is normal.  The trend is still going up, which is what they want.  I get nervous when they are a little lower, but then am overjoyed when they go up again.  The doctors are not concerned, they say that her counts came in so early that it is all perfectly normal.

Lydia is definitely on a hospital schedule.  She has her vitals checked every four hours, so she usually wakes up for an hour or two, plays hard, then goes back to sleep for a couple of hours.  Yes, day and night!  But it is so good that she is able to get up and play. 

Lydia is being weaned from her pain medicine.  She is doing great.  It is expected to be completely off in the next day or two.  She still needs quite a bit of meds for her tummy, with the cold and everything.  She also needs a lot of transfusions, both platelets and red blood.

Thank you all for your prayers and signing our guestbook.  It keeps me connected with the outside world.

Love,

Liz

PS Today’s ANC 880

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