So much to celebrate!!

Hello everyone!  Hope all of you are doing well!

Recently, my parents celebrated their 40th wedding anniversary!! Congratulations to them on working together, building a beautiful life and loving each other through the best and worst.  Such an accomplishment! They spent the day at Sequoia National Park enjoying God's beautiful creation! 

2016

1976

In other good news, my dad will celebrate his first re-birthday on September 9th! This is the date he received my Aunt Char's bone marrow that saved his life.  Words can't express how grateful we all are.  

In honor of his first re-birthday and just to plain ol' spread some goodness into the world, we are working with the City of Hope (where he had his transplant) and plan to distribute fleece/tie blankets to the folks on the transplant floor.  There are 38 beds on this floor and we can only make so many ourselves...

Call to action! We need some support from our friends and family to either make a fleece blanket and donate it to this effort or to donate $20 and we will buy the material, make it and deliver it to a patient in need on your behalf!  The hospital is so excited that we are coming and doing this.  It's amazing how something as simple as a comfy blanket can give someone the boost of energy they need to find strength for that day to keep going.  Most importantly, we want to bring a smile to their faces and spread as much love and hope as we possibly can.   If we receive more than 38 blankets, we will move to the other floors in the hospital.

I have set up a paypal link if you choose to donate.  paypal.me/JNightengale/20

I will personally send you a photograph of the blanket we've made with your contribution.

PLEASE contact me for more details via this blog, facebook or by cell. 

Note for those that want to make one: any color and pattern is fine - you'll need two yards of each side of the blanket.  It is most cost effective to do pattern on one side and a solid color on the other side.  The blanket must be sparkling clean before we distribute to immunocompromised, sick people.  Please wash and dry it after it's made.  If you have animals in your home, again please make sure that the blanket is clean and free of any animal hair.  Here's a picture of some my mom has made so far.

Please consider donating to this effort - we need help in order for it to be a great success!!

Thanks everyone.  We appreciate every single one of you for your prayers and love for my family.

Jen and Nicole

7 months later...

Hello everyone! Can you believe it's been 7 months since we've last posted? I sure can't.  However, we still have people ask us constantly how my dad is doing, which is so incredibly appreciated.  We wanted to share with everyone the great news...dad is still in remission and doing great! In fact, he had his monthly ongoing check-up today at City of Hope and all of his blood numbers came back in normal range. Whoo hoo!!

2 years ago this month is when dad was first diagnosed.  In 3 weeks he will be celebrating his birthday, which we are all excited for.  Birthdays are a big deal now, they should never not be a big deal in my opinion, for anyone.  He technically has 2 birthdays a year now, June 1st he will turn 61 and on September 9th he will celebrate his 1st re-birth day (first year with new cells). 

Here's a picture my mom sent me today of him in front of the fountain at City of Hope.

God is good, all the time.

Thanks everyone for following his story and for your constant thoughts and prayers!! xoxo.

Below is a recent picture of my dad with his perfect match bone marrow donor, his sister Charlene.

On the Road to Recovery - Good News!

Hello All! It's been a while since we've updated - thank you for your continued thoughts and prayers. Overall, he is doing great! He and my mom are based at home now and travel back to City of Hope two to three times a week to have blood draws, review blood and enzyme levels, discuss next steps, and check in with their Doctor.  My dad is slowly gaining more and more energy daily - he tires easily but he is able to drive himself around, runs small errands, and has been coming to see his granddaughters play soccer and do every day "life" activities that you and I are blessed to be able to do every day without thinking twice about it. What a blessing!!!

Here is a picture of him at Aubree's third birthday party on Saturday.  I can't tell you how special it was for him to be there.

Guys, we wanted to celebrate my Dad's recent triumph and raise money in his honor for the Leukemia and Lymphoma Society via the Light the Night event once again this year.  My sister and I have plans in the works to do some sort of service project related to cancer patients every year, and this year we are raising funds for #Team Bill that will benefit LLS.  We would greatly appreciate your support and every dollar counts.  Every cent is important.  Please contact me if you would like flyers to take to work.  If you work for a large corporation that may be interested in a corporate sponsorship, contact me! Please consider donating. This is such a wonderful, deserving charity - all in the name of celebrating my dad's turbulent year.  The best part about the Light the Night event this year is that my Dad has been selected as this year's survivor honoree.  We will be speaking during the main program that evening and sharing his story while also sharing on the mission of LLS.  We'd LOVE for you to be there if you can.  CSUB Amphitheatre, Nov. 7th, 6 pm.  Save the evening for Dad! :)

It is a blessing he is here with us and has reached remission once again.

My link is below.  LOVE TO ALL!

http://pages.lightthenight.org/cca/Bakersfd15/jnightenga

Surprise.

Hope you've all had a terrific Tuesday!!
*I started this post last Thursday and sadly I am just getting to finishing it...the ending has changed a bit, so here goes nothin'.

Mom and Dad have a pretty good week thus far! And they had an especially visitor-filled weekend (and how fun that visitors got to hang in the motor-home instead of hospital room!)
Friday night his cousin Karen and her husband Mario surprised with a visit. Saturday evening my cousin Cary and his wife Noreen came down to visit and Sunday a fellow Acute Myeloid Leukemia transplant survivor, Sheryl, and her husband went down to visit and fellowship.  AWESOME!!!!

Cary and his wife Noreen visiting Dad this past weekend! Love.

They had a checkup at the hospital last Thursday and all numbers looked good.  No blood products were needed, no potassium or magnesium needed and still no sign of host vs. graft disease and no fevers, which signal infections.  Praise the Lord!!
This weekend, after a bone marrow biopsy on Friday to ensure that all leukemia is clear in his new bone marrow cells he received from his sister, they may be allowed to come home for a few days...! Fingers crossed.  They will have to still be seen 2-3 times a week at City of Hope, but even a few days home each week would be AMAZING.  They've been away from home, their dogs, 'normal' life, us girls, their granddaughters, family, etc. for 30+ days now.  I know they are more than ready to come home.

Mom just told me they ventured out to Santa Anita Park today and enjoyed an afternoon of horse racing.  Dad even made a small wager on a horse and won! Pretty sweet.

Thank you all again for being constant prayer warriors.  It's working!!!
Continued prayers for my dad would be that he'd have an appetite, a calm tummy whilst taking SO many medications, and no infections or host vs. graft disease.
And for my mom....I think we should take donations to purchase her some diamond encrusted angel wings.  She's earned them! What do you think?

Here's to a great rest of the week!
Nicole

PS- **HUGE update...they are HOME!! They drove home after the bone marrow biopsy on Friday and enjoyed a quiet weekend home.  They will be headed to City of Hope tomorrow and Friday for regular check ups, to get preliminary results on the bone marrow biopsy, and to check overall progress.  Halleluah!!

PPS- Thanks to those that are still sending cards.  It's amazing! and my parents LOVE them.
Thank you.

Discharged!

Hi Everyone! We are happy to report that Dad has been discharged from the hospital and is now able to stay in his motor home which is parked on hospital grounds!! Yahoo!!! They are beyond thrilled to be out of the confinements of the hospital, despite being far from through with this entire process.

Typically when a bone marrow transplant patient is discharged at this point in their journey, and don't live in close proximity (many patients travel from all over the world to be treated at City of Hope) they go to stay at an onsite 'village', which is like an apartment.  Patients are still fragile at this point and need to be as close to the main hospital as possible for quite some time after transplant to continue to be closely monitored in case a fever arises, any other signs of complications or host vs. graft disease.  Instead of staying in the village, they are camping in their RV, and for the next couple weeks they will travel to the hospital at least two times a week to have blood work done and check in with the team of doctors.  My parents are blessed that they have a little piece of home there with them and are now in their own space, even though they aren't officially home yet.

These photos are from discharge day - excited to be OUT!

Additionally, in the last post we put out a call to action with regards to a card drive.  We wanted to express our sincerest thanks to everyone who took the time to get a card and mail it to my parents.  My mom would send us a text daily saying, "look what we got today!!" It is a tangible reminder of how many people are thinking and praying for him.  We are so incredibly thankful!! Family, friends of Nicole, friends of mine, and friends of theirs all participated.  Thanks a million you guys! It's not too late...if you'd still like to send a card (and make their day!), here is the address:

City of Hope-Helford Bldg.

C/O William Ray
1500 East Duarte Road

Duarte, CA 91010

Dad is taking life one day at a time and is making progress every day.  Most of the important numbers they are watching are back in normal range, and dad is working very hard to gain strength back.  The recovery will be a long process but he is more than up for the challenge and we know he will continue to persevere. 

Love to you all,

Jen and Nicole

Day 22...and counting.

Well folks, I know its been awhile since posting, so I wanted to update you on dad's progress.

Thought I'd go with some musical inspiration tonight....the blog has been dominated with the Beatles but tonight I'm going with another one of his favorites, Kenny Loggins!!! Click play, picture my dad playing the drums (love), and enjoy while reading the rest of this update.



Obviously he is tired (and that is NO where near the correct adjective :/) of being in the hospital.  Despite getting the best care at City of Hope, living in a 10x10 hospital room is starting to wear on him.  It has been 22 days since the start of this hospital stay and 13 days since his bone marrow transplant.  So far he is doing well, considering, but over the last week specifically he is battling intense and severe nausea/vomiting, diarrhea and exhaustion.  However, his white blood count is starting to climb.  It's up from  <.01 to .7 just within the last two days and it remained at the lowest point for what seemed like forever... so we are excited about this development!  Once he hits 1.0 he will still have a weakened immune system, but the 1.0 marker is considered a bare bones immune system.  As the days pass and Char's cells multiply he will get back into normal range (4-11).  The white blood count rising means Aunt Char's cells are starting to "settle in" and are replicating!!  We continue to ask for prayers for the long term success of this transplant, no graft vs. host issues or any other complications, and improved physical and mental health.

I think it goes without saying, but they are feeling a weeeeee bit isolated.  So text messages, emails, letters, pictures, cards, silly dubsmash videos, etc. would be AMAZING!! We are begging for some extra cheerleaders.  (We need fresh pom poms, if you will!)

So here's the mailing address...

City of Hope

1500 East Duarte Road

C/O William Ray

room 6103 Helford Bldg.

Duarte, CA 91010

Get those stamps out and send some love via snail mail.

My dad is a card lover.  He will truly LOVE this.  So, go get your cards people!

I know SO many of you are praying and cheering him on daily in your devotions. 
Thank you.
The prayer team in his corner throughout this long journey has been truly remarkable.

In lighter news....
Tony brought their RV down to the City of Hope campus last week and so now they have a taste of home right in the parking lot.  (HUGE thanks to Tony!!)

Hopefully in a week's time dad will be released and can stay in the RV and check in with the hospital every other day.

Also, Jenny and I got dad a cross and dog tag necklace and had it mailed....he loved it! One small way to encourage while we are away.

Thanks to Kenny and Stevie.
"Day by day, we can see, In every moment there's a reason to carry on"
"Sweet love showing us a heavenly light."
"Never seen such a beautiful sight."

Keep kicking ass dad!!
Nicole and Jenny

Donation Day

Hey all!! Thank you for your continued prayers and support, despite our absence for the past few days.  Jenny and I both have slightly scratchy throats, kids with funk, etc. so we were unable to make the drive to City of Hope this weekend to visit with mom and dad. (which has me completely heartbroken- because I know they treasure company and visitors, but its whats best for dad) We are missing them immensely, but FaceTime, silly Dubsmash videos, and phone calls will have to suffice for a few days. (They LOVE messages, cards, phone calls, etc....if you are able I know they'd LOVE to hear from you!)

Overall, he is doing AMAZINGLY well!! He has had the five doses of chemo needed before the transplant, they have done two days of anti-rejection medications, and now it is the eve of the bone marrow/stem cell transplant.  Dad is feeling a bit down today, my mom reports,  but that has a lot to do with him having zero immune system again.  So he's tired.

In other news, my aunt Char went down last night, and began her part of the transplant process this morning.  She had to have a port put in for the procedure itself and by about 11:00am, she was ready to begin.  They have her hooked to a machine that is pulling out blood, spinning out the cells they need from her blood, and then she gets the rest of the blood put back into her body. Sounds creepy, but she is in GREAT spirits and reports that it has been pretty uneventful!
(Tomorrow Dad will get these cells that she is donating!!!!!)

I asked my mom for a few picts of Dad's angel, aunt Char, and I cried.  She looked so peaceful.  Char is so completely thrilled that she is able to help dad in this miraculous way.  And to top it off, she brought her own picture of him to put in her room during her hospital stay.
Full on tears.

Sweet Aunt Char donating to Dad today!

Obviously, there are no words to express our sincerest gratitude to Aunt Char and the amazing gift she was able to give my dad!!!
How lucky he is to have found a perfect bone marrow match in her.
SUCH BLESSINGS!

Thank you faithful followers.  We appreciate you.  Thank you for your continued prayers.
Prayers for Char to have a smooth and speedy recovery.  Prayers for Dad to be free of infection, free of host/graft issues, and that his body accepts these cells and rebuilds leukemic free cells.
Prayers for my mom to remain his constant cheerleader.
(I don't know how she does it!)
Love to all,
Nicole and Jenny

Time for Transplant

Dad's Motivation

Hey All,

A short note to let you know today was departure day to City of Hope for the biggest hurdle of all, bone marrow transplant.  This is a very lengthy process and will take a minimum of 90 days at the hospital.  We ask you to please please please send prayers for my mom and dad as they embark on what will be one of the hardest parts of this whole journey yet.

My dad is partaking in a clinical trial and will receive a chemotherapy drug prior to transplant that will help him stay in remission long term.  Believe it or not, because AML is such an aggressive form of leukemia, there is still a possibility of it recurring after a perfect match bone marrow transplant.

We are confident that God will protect my dad and will give him the strength, courage, and determination he needs to endure this part of his journey and will see him through.  My dad is so amazing you guys, its crazy. My heart is bursting with love and pride in him for staying as upbeat as possible and for being as willing as he has been to do anything and everything he can to help himself gain health once again.

Please feel free to comment, message, text us, my mom, etc. at any time.  It's such a reassuring feeling to know that there are people praying and cheering them on.

Thanks everyone,

Jen and Nic

Blood Drive Success!

We had an AMAZING turnout for the Blood Drive and Be the Match evening!!! We had well over 75 people there, 66 people came to donate and 15 people signed up to be a bone marrow donor! IT WAS AWESOME!!!

We packed Houchin. (For awhile there was a wait like some fancy restaurant! Love it!) We filled every blood donation chair they had- which has never happened since that location opened!

If you haven't watched the short video one of the Houchin directors posted to their Facebook that night, please do so below!

We reached a milestone at the Bolthouse donor center tonight with every blood donation chair full. What an awesome tribute to Bill Ray Jr. from his family and friends who are here donating blood and signing up for the Be the Match Bone Marrow Registry!!
Posted by Houchin Community Blood Bank on Thursday, August 20, 2015

Sisters! Love.

We had 25 new donors give blood for the first time. YES!  My sister and I were loved on, encouraged, and supported all evening.
Needless to say, the event was a HUGE success. But, I think the best part- even better than the 44 units of blood that can save up to 132 people, was how happy my parents were to FaceTime with those who were there and to see pictures of people they didn't get to talk to. They beamed! It was exactly what they needed.... A big reminder of how many of you are truly in their corner constantly cheering them on and praying for my dad's success in beating leukemia! It was perfect.
Thank you everyone. It's totally inadequate, but thank you.
Here are some pictures from last night.
Nicole

PS- on top of that, my dad had a slough of tests done at City of Hope and he did unbelievably well. All tests have been passed so far, keeping them on target to head back for the transplant process on August 31.

PPS- I totally missed getting a picture of everyone who was there...sorry!

Doug and Marcus

Daniella, First Time donor!!

First Time Donor Peggy!!

Friends and regular donors, Ann and Jay!

First Time Donor Regan!

First Time Donor and Dear Friend, Michelle!

Friend DeWayne donating for the first time!

Aunt Kathy, Friends Art Jr., and Susan giving blood!

Tile Friends came to support! Tony, Eric, Aaron, Larry, and DeWayne.

High School Friends Reunite! Erin, Kate, Jenny, and Me.

Marcus and Derrick, first time donors!!

First Time Donor and BFF, Anita!

Super Soul Sunday

(I'm channeling my inner Oprah on this Super Soul Sunday)

Last week mom and dad hit the month mark on their stay at City of Hope and last week in particular, was VERY difficult.  There wasn't any significant change in his white blood cell numbers (they were not increasing as quickly as they hoped), he had a bone marrow biopsy and they were waiting on pins and needles for the results to ensure that he was leukemia free, and let's be real, they're exhausted and have lived in a hospital for a month.  Talking to them last week was difficult.  Everyone was sad.  Down.  Feeling defeated. Dylan really took on the role of ' lead encourager' and I was reminded of author and college professor Brene Brown, who has been on Oprah's show many times. 

One of her quotes resonated with me, “Faith is a place of mystery, where we find the courage to believe in what we cannot see and the strength to let go of our fear of uncertainty.” 

Faith.  It is so simple and yet sooooo challenging at times.

My family, and especially my parents, have been challenged to believe in what they cannot see.  Every step of this LONG journey is requiring Faith.

Well, we held on to faith and prayers were answered in a GIGANTIC way Friday.  

Dad's bone marrow came back leukemia free!  Hallelujah.

Dad was given a neupogen shot, which boosted his white blood cells from 

roughly 100 to 1200 in one night! Hallelujah.

Dad hadn't needed blood products for two days, 

so he was released and able to come home!!!!!! Hallelujah.

So, you read correctly, he is home.  He is still tired and weak.  Those near him are still required to wear gloves and masks, BUT we are beyond thrilled that he is HOME!!

   

Here are the girls rocking their gear to visit Papa!

Big developments!

We got some very long awaited, amazing news today that has lifted everyone's spirits, especially my mom's and dad's! They have been living inside the hospital now for a month straight....this was the perfect pick me up they needed to persevere and get through this first stage of his treatment.

My dad's doctors ordered his bone marrow biopsy two days ago, earlier than originally planned, due to his numbers remaining low - particularly his white blood count not really moving that much.  Dad has been terribly sick and feeling several different side effects especially over the last week.  We learned this evening that dad's biopsy came back clean.  The leukemia is in remission!!
Whooo Hooooo!
If this bone marrow biopsy had not been clean, he would have had to do another 30-40 day round of chemotherapy - and would not have been able to move forward toward the bone marrow transplant.

My Aunt Char has spent a couple days this week at City of Hope doing different tests and some blood work, part of the process in being the bone marrow donor.  All of her testing came back clear - another huge blessing!

Today my dad will receive a shot that will boost his white blood cell count, which in turn will allow him to build back his immunity quicker and speed up this part of the recovery process.  Once dad shows his numbers are consistently up and in normal range, dad will be discharged to a cottage on the hospital campus and will have to go back and forth from there to the hospital to check his progress, receive blood products, etc.  A change of scenery is MUCH needed!

After that part of the process, he will be able to come home for 1-2 weeks.  Then, it is time for his bone marrow transplant.

They are taking one step at a time, one day at a time.  We are elated that he is in remission right now!! It is a big deal guys! Thank you for your constant interest, thoughts and prayers for my family.  This is a terribly trying time and it feels so good to know that dad has some big supporters in his corner.

And speaking of supporters in his corner, we hope to see you at the blood drive/bone marrow registry event we are hosting for my dad next week - August 20th from  4 - 7 pm. If you haven't seen it on facebook yet (I would be surprised if you haven't - we've been working hard to spread the word!) We will post next week as a reminder.

Love to you all!!

39th Anniversary!!

Happy Friday everyone!! 
Today marks the 39th year that my parents have been married! (what an accomplishment!) This year they are unable to celebrate in a traditional way, but I know they are both unbelievably happy to be together despite it being in a hospital.  
They are each others' best friend, soul mate, and confidant. And have been since they were 16 years old skating at Skateland and Starlight Skating Rinks.

Their wedding photo

Since those old skating days, they have built an amazingly successful business, had two perfect children (in my opinion! ha!), afforded both Jenny and I lots of opportunities, traveled together, built dream homes, loved on and spoiled their four grand-girls and most recently faced cancer and kicked its ass together.  Always hand in hand.
Join me in wishing them a Happy Anniversary...via text, comment, Facebook message or whatever. I know they'll be thrilled to hear from you!

 

As Dad laid in the hospital last year, this song came on and he started singing to Mom. It was so sweet! LOVE.

Celebrating last year's anniversary

All smiles after a great day on the lake with the jet skis

This song totally speaks to my parents' love...
-they beat the odds together
-they're still going strong
-they're still running to each other
Quite the example. I hope that many of you are as lucky as my parents are, to have found the one you truly love.

Nicole and Jenny

Picture Time!

Dad with his sister and bone marrow donor, Aunt Char!

Hello Friends! A very brief update to share some pics from very faithful supporters who have sacrificed their time to drive long distances to come see my mom and dad.  Dad's favorite girls, his grand-kids of course :), have made him some pretty awesome artwork for his room...he's also received trinkets, gifts, cards, quotes, and flowers (artificial, he can't have real flowers in his room) from some of his supporters as well.  How wonderful! We thought we'd share!

Dad's cousins Ronnie and Linda taking a selfie in their car on their way in to see Dad

My Dad and his Dad, Papa Bill

Dad and his cousin, Steve 

Dad with his sister Char and brother-in-law, Cliff

All of the comments, texts, prayers, thoughts, notes, gifts, all of it mean everything to us as a family.  If you'd like to send a card, please message or text us and we will make arrangements to get it to him.

Thanks!

Jenny and Nicole