September and October Updates

Before the year zips by, here's a re-cap of September and October in the Timmons' house.

September marked the beginning of Josiah's Pre-K cooperative.  We have joined 3 other families to get our soon-to-be kindergardeners together for a morning of learning and fun each week.  Each mom takes turns with the kids and emphasizes a different subject; art, math and music, history, and science.    Mary completed an introduction to basketball workshop at school where she demonstrated a great attitude and sportsmanship, but didn't fall in love with the sport.  :)

September kicked off the beginning of fall t-ball
for Josiah and Coach Timmons.

In October, Josiah's Pre-K friends and their families had the opportunity to visit the Bat-cave!  The trip was a surprise, a blast, and complete with rides in the bat-mobile and bat-cyle.

a few of Bruce Wayne's buddies

Josiah reached another treatment milestone
 with the removal of his port in September.

Here's the sign we made for our neighbors
 during the world series,
they followed suit and blessed us with
 a Giants banner the next day.  :)

We celebrated Stella's 2nd birthday at a fall festival
at the end of October.

Our kids were joined by one of their new neighbors
 and shared their  first taste of trick-or-treating this year .

Go Gold!

September is Children's Cancer Awareness Month and we are sharing a video of Josiah's personal story over the last 11 months, information about children's cancer, and ways to be involved.

 Josiah's Journey….

Pediatric Cancer Facts

• In the United States alone 10,450 children under the age of 15 will be diagnosed with cancer in 2014.
• In 2013 Josiah was only one of 289 newly diagnosed cancer patients at Phoenix Children's Hospital.
• A child is diagnosed with cancer every three minutes.
• Phoenix Children's Hospital is a leading participant in research to find cures for childhood cancers.
• The gold ribbon is an awareness symbol for all forms of cancer that affect children and teens.  
• The color gold was selected because gold is a precious metal and children are more precious than gold.  

Ways to get involved

• Wear a gold ribbon!
• Raise awareness and support research with a vanity license plate.  In Arizona, the "Curing Childhood Cancer" plate costs $25, $17 of that goes toward childhood cancer awareness.  www.ServiceArizona.com or at the MVD.
• Contact our very own Kim Froehle, the Certified Child Life Specialist at Phoenix Children's Center for Cancer and Blood Disorders regarding patient needs and activities.  (602)933-0535
• Contact Bonnie Morgan from the Phoenix Children's Foundation regarding funding for research (602)933-2607.
• Support organizations that have been a blessing to many children and families like ours such as the Children's Cancer Network and Comfy Cozys for Chemo 

The tail of July and the tale of August

We were given the go ahead to take a family vacation (per Josiah's doctor) at the end of July so we booked it to San Diego right before Mary started school.  August mostly consisted of adjusting to the back to school routine, Aaron traveling for two weeks, and a visit from Grandma Nancy.  Aaron also took me on a date to watch dueling pianos and I have begun a women's small group at our church.

Mary's 1st Day of 2nd Grade

Family Vacation to San Diego at the end of July

We got to visit with our friends Kyle and Carly Walters.  Here is our "get a photo of all the kids" shot before parting.  :)  Stella and Sophia almost escaped the photo, but we got 'em all in there!  :)

Don't worry Dr. Dana, his port was never submerged in water or sand.  :)

Stella loved the giant sandbox we called "beach".

Mary with her carpool buddy Maddie.  It is monsoon season and we have been enjoying some rain showers and cooler weather.

Mary's favorite subject is history and she soaked up a recent date to a special exhibit on Ancient Egypt at Phoenix Science Center.

July update, so many things to celebrate!

On July 7th, Josiah started a new phase of treatment called maintenance.  This is a significant milestone  because the intensity of medicine and side effects will be lessened.  His hair is already starting to grow back.  He will only go to the clinic once a month for certain chemotherapy and take the rest of his chemo by pills at home each day.  Each month he will have five days of steroids and I truly hope that we all learn how to deal with that well as we get used to this new routine.  He is not himself, it is hard for the girls to understand, and it has been a challenge for me to know how to parent through it.  If he continues to do as expected, he will complete chemo treatments Feb. 2016.

In addition to regularly supervising this year's mini garden, Mary has been busy setting up a library.  I have loved every minute of watching her ponder which books to include in her collection, consider different ways to sort and label books, stick pockets in books, write on checkout cards, and learn to use a date stamp.  Opening week brought a handful of patrons who each graciously checked out just a few books as well as her first official story time.  For those interested, her library is open by appointment in our home.  Whose kid is this anyway?

Stella has been embracing the power of the stool.  Why wait to grow when you can get into way more stuff by climbing.  She has successfully transitioned to a toddler bed, loves baths, loves all things girly, loves brushing her teeth (aka sucking the fluoride free toothpaste off the brush) and has mastered her scream.  When she is not busy getting into things, she enjoys thinking of new ways to get into things.


I have recently had a dream come true.  Aaron and I have begun to work with wood together.  We have put shelves in one closet and in our utility room.  Awhile back I caught myself saying something like "In my other life I would have been a woodworker".  I have said things like that before, but this time I decided it was ridiculous to continue saying that.  So we bought some wood, and built some shelves, and bought more wood, and bought a saw, and build more shelves, and started designing a mud room/nook….  I'm so excited!

We enjoyed time with our friends the Harts during a recent visit from Kansas

Forth of July enthusiasm.

4th of July fireworks painting...explosive.

Josiah is home!

Josiah got to come home today!  His ANC (absolute neutrophil count) was 192 this morning and the doctor decided it was close enough to 200 to be released.  :)  We are all excited for some family time at home!  Once his ANC hits 750 he will start the next phase of treatment.

encouraging news

Josiah's ANC is up to 117 today!  (I was given a very low number this morning that was incorrect, so I hope no one gets too confused by that.)  Also, thanks to a new medicine that has kicked in, he is eating again.  Other fun news, my sister is in town for the weekend and Stella has two new teeth.

Monday update

Brief update, Josiah is feeling well, ANC of 40, hardly eating, enjoyed a visit from a friend this afternoon, content and happy in his room.  He officially finished delayed intensification today!

We had some sweet father's day family time yesterday morning and Aaron and I had a date!

Little Man Feeling Better and Some Helpful Information

Dizzy Izzy No More
After Josiah had his spell with equilibrium problems on Friday night the care team at the hospital has monitored him pretty closely. I'm thrilled to report there has been no symptom recurrence and the doctors are no longer worried that something serious was going on.
Though he still has bouts with nausea, his energy level and infectious smile have been consistently encouraging. Today during the doctor's visit Josiah took advantage of his temporary freedom from IV tubes by running back and forth across his room at least 10 times. All the adults were exhausted.

ANC Status and Further Explanation
After the nurse told me Josiah's ANC count had dropped to 8 this morning, I (Aaron here) was pretty bummed. Things just weren't adding up for me. Last Monday his ANC was only 43 away from the magic number of 200 to be released from the hospital. Now 6 days later he's at his lowest level yet. My first thought was "Is he ever going to be able to leave here?" Rather than ask the doctor such a desperate question, I asked "what is suppressing his ANC? Is it chemo, cancer effects, effects of the now-gone flu?"

The doctors explanation was rather insightful in a number of ways

• ANC suppression is a product of the chemo cocktails
• The chemo primarily attacks four of the fastest cell growth areas of the body
• Hair
• Mouth (we do 'mouth care' 3 times a day to protect against this one)
• Cancer cells
• Bone Marrow (there is no protection)
• The bone marrow is where the good cells are produced and the chemo has effectively turned off the factory
• 80% of kids in the final stages of active chemo (where Josiah's at) are admitted to the hospital because their immune systems have become so compromised
• The doctor said the pattern is so common that he can reasonably estimate when Josiah will be released: June 22nd is his educated guess based on the current treatment plan
• The current treatment plan is:
• Tomorrow 6/16 Josiah should receive his LAST active phase chemo treatment
• Approximately 2 week after that (~June 30th) his ANC should be recovered enough to begin the less aggressive maintenance phase of treatment which starts with bi-weekly treatments

"Is he ever going to be able to leave here?" God willing it looks like he's about a week away. Sarah and I were grateful to have information and to know that the Dr. was not concerned with how things were progressing

Please pray for patient, abiding, endurance for our family. Though we're being loved by so many right now, the instability is wearisome. Pray for Mary and Stella as they deal with the instability of staying with many different people.

Little man not feeling so good

This morning Josiah's equilibrium seemed to be off and it grew worse later today.  After he threw up, they ran a CT scan that came back clear.  We'll see how he is doing tomorrow and go from there.  He had an ANC of 50 something today.  Aaron flew home early on Thursday.  We are so grateful for friends who have taken care of the girls this week.  Thank you all for praying for him.  Let's certainly pray for his little body to make neutrophils, but let's also ask and watch for God to do great things in and through this situation.

The good, the bad and the ugly

THE GOOD

Joe is really doing great.  He is eating a little better and they have taken him off fluids a few times.  He has had a great attitude and keeps bringing smiles to everyone's face.

I must say that I have been appreciating the clean and air-conditioned air here at PCH.  My allergies have been non-existent and I have been sleeping better than usual despite the nightly interruptions and chair/bed thing.

THE BAD

Have mercy.  ANC of 70 today (needs a 200 Absolute Neutrophil Count).  I don't know how families do this for months at a time.  How do we stay busy?  Crafts, books, toys, movies, drawing, puzzles, and visitors. We have even attempted puzzles picture side down, repeated a movie in a different language, and make dragon claws out of medical tape and paper.  This is great training for an Arizona summer.  :)

THE UGLY

Josiah had the choice to repeat his viral test today and possibly be cleared to roam the halls and visit the playroom.  He decided he would rather stay in his room than have that test done.  They stick swabs WAY up your nostrils and twist for 10 seconds.  

One day at a time

Update on Josiah-
His ANC (absolute neutrophil count) had climbed to 157, then dropped to 65 so he stayed another day. They decided to go ahead with his chemo that was due Monday so now we wait and see his blood counts tomorrow.  He is feel well, in a pretty good mood except a brief meltdown because mommy didn't draw a very good beaver.  (Childlife Workers with clipart and printer to the rescue).  All he wants to eat is sausage patties, peas, and popcorn.  All for now!

A bug has been making the rounds

Josiah was admitted into Phoenix Children's Thursday afternoon, June 5th with a fever.  Because he has a port and a compromised immune system, they want to catch any infections as soon as possible.  He has only tested positive for influenza and has been receiving antibiotics (just in case) and something to lessen his flu symptoms.  He hasn't had a fever since Friday night and his ANC (absolute neutrophil count) has been slowing climbing up.  It needs to be at least 200 for him to be dismissed.  He has been sleeping well, eating poorly, staying busy in his room, and in pretty good spirits. He received red blood cells on Saturday and platelets on Sunday.  

The rest of the family had our turns with something (possibly the flu that Joe has, but the 4 of us had our flu shots).  Mary missed a few of her last days of school due to illness, but has recovered fully and is now consuming books rapidly in her summer free time.  She also enjoyed the opportunity to go to a church day camp two days last week.  Aaron was the last before Josiah to be hit by the bug and has been traveling about every other week since the middle of April.  For those of you following the blog and concerned about the atrocious teal paint, you will be relieved to know that in the last month it has been pleasantly covered by Bison Beige and Deep Crimson.  All for now!

Mother's Day dinner with the sharks

"not just a neck pillow" by our up and coming fashionista

Aaron and I celebrated our 11th anniversary May 18th!

Teal paint finally covered

Fun with naked egg science projects  (click here for how to do it)

April update

Teal in Kitchen

Team Timmons did not fall off the map, we just slacked on on blogging for awhile!  Here's the monthly update on our happenings!

At the end of Mary's spring break Aaron took a trip to SE Kansas with the girls to see family and participate in an annual fantasy baseball draft.  Josiah and I filled our days with a chemo treatment, painting the kitchen teal, and eating biscuits and gravy.  The only thing good about the teal is that I took a risk and tried something.  Everything else about it is bad, bad, bad.

Cousins playing dress up!

We had a lot of visitors in March and at the end of the month we celebrated Mary's 7th birthday!

In the beginning of April we had the opportunity to join thousands of other Amazon employees and their families at Chase field to watch the Diamondbacks play the Dodgers, well, mostly stand in really long lines, but there was some baseball to be had.

Stella with an Easter Bunny that has traveled
back and forth between friends for over a decade!

This weekend we enjoyed going to church together as well as celebrating Easter at home as a family.  We had a scavenger hunt for the kids that made for a fun and simple way to talk about the gospel, we colored Easter eggs, had a simple but special dinner, rested, played games, and made resurrection cookies that turned out less like a hollow tomb and more like the stone that was rolled away!


Josiah has been to church and library storytime, as well as trips to the grocery store for several weeks in a row now.  He also has just begun delayed intensification.  This is his final phase of treatment before maintenance when his protocol intensity decreases substantially.  He had been taking a medicine to increase his appetite and to say it worked would be an understatement.  The kid was going through 32 ounces of cooked egg white every 2-3 days.  He is back to weekly treatments and right now the hard part is the irrational mood swings due to steroids, the nausea, and fatigue.  Last week he had two fun surprises at the clinic.  Daddy came for the day and got to see the clinic and meet several of his doctors and nurses.  He also got to drive a mini hummer down the hall before his lumbar puncture.  It was crazy fun.

Like any good dance teacher,
Mary started her lesson with snack time!

Mary is gearing up for all kinds of end of the year fun including a spelling bee, a play, a choir concert, a school wide carnival, and of course summer break!  Stella is busy reorganizing anything she can get ahold of, babbling up a storm, and bringing all kinds of smiles to everyone's faces.

Biking, Running, and Walking!

By far the most exciting news around these parts is that Mary is learning to ride her bike!  Thanks to lesson from Grandma Dee, she has steadily grown in comfort and confidence.  Last night she rode while Daddy ran alongside her.  The jury is still out on who is actually faster.  :)  

Speaking of going fast, we were joined with several friends on Saturday the 8th for the Run to Cure Cancer.  Several members of our team ran the 5k, some of us walked, taking turns pushing Josiah and Stella in the stroller, and Aaron set a personal record in the 10k!  Josiah was tired, but full of smiles and got to walk across the finish line of the 5k and the 1/4 mile survivor’s walk while sporting a yellow superhero cape.  

Here’s his latest treatment update, he went in again for chemo on Feb. 27th, then this week Monday and Tuesday he received 3 different chemo meds and some red blood cells.  He was delighted by three volunteers from PHX Theatre's "Partners That Heal" who told him a story about a boy named Josiah and his adventures with animals.  They are actors from the community who visit the hospital to sing, tell stories, be silly and bring smiles.  We were excited to hear his ANC was up to 3978 and he has permission to go and do whatever he feels up to for the next couple weeks.  He wants to go to church, the movie theatre, and life group.  

Every drop counts

Josiah was able to start his next phase of treatment this week.  His ANC was up to 1260.  This phase is called Interim Maintenance.  He went in for chemo and a lumbar puncture on Monday, then back for a chemo infusion on Tuesday.

I have heard someone say that a diagnosis of cancer can be financially crippling for a family without health insurance.  I can absolutely see how true that would be and I continue to be so thankful for God's provision for Josiah's medical needs through Aaron's job, our health insurance, and gifts.  Just for fun, on Tuesday while Josiah was hooked up for chemo, I decided to calculate the cost (original amount billed to insurance) of one drop of one (90 minute) infusion on one day.  Once I shared my mission, I let nurses place their bets.  :)  According to my calculations, since 97.9% of each drop was saline and the rest was actually chemo medicine, 2.1% of one drop had a price tag of $30.

Our family is participating in a race on March 8th at Grand Canyon University to raise awareness and funds for childhood cancer and directly benefit Phoenix Children's Hospital and the Children's Cancer Network.  If you want to run with us, let us know and register under "Team Timmons" at http://www.runtofightcancer.com.  If you would rather make a donation, go to:  http://grouprev.com/team-timmons.  Every drop counts.

A niece, a wait, and a race

Today we celebrated the birth of our newest family member!  Aaron's brother Ben and his wife Pamela got to meet their precious daughter Zoe Kate this morning.  Pam and Zoe are doing well and we couldn't be more excited for the three of them!  

I was so pleasantly surprised with how well Josiah did in the clinic today!  Accessing and de-accessing his port were not nearly as difficult as usual.  Josiah even caught the nurse off guard when he shouted "One, two, three, go!" and the nurse wasn't ready.  :)  I was also surprised to learn that his ANC had dropped from 396 last week to 176 today.  That means we put off treatment for a second week.  I asked how long this can go on and they were vague in their answer so we'll just keep taking this one week at a time until his body decides to start making more red and white cells or until someone with letters behind their name gets concerned.  

On another note, our family has registered to participate in the Run to Fight Children's Cancer at Grand Canyon State University.  Aaron is signed up for a 10k, I'm signed up for the 5k, Josiah is doing a 1/4 mile survivor's walk, and Stella and Mary will be enjoy all the kid friendly activities when they are not cheering for someone.  Aaron is a runner.  I have the best trainer this side of the Mississippi behind me, but let's just say it is not going to be easy or pretty.  It feels good to be working toward this goal though.  Rumor has it that at least a few friends will be joining Team Timmons as well so it should be a really fun day!  Let us know if you want to run too!

A day in the life of child with cancer

Someone nudged me to give you a real picture of what Josiah is facing and how to pray for him.  

Tomorrow will be hard for Josiah.  He will wake up early and eat some cereal.  Then he will fast until his lumbar puncture in the early afternoon or until we find out his blood test dictates that he is still not ready to start his next phase of treatment.  Either way, the hardest parts of his day are getting his port accessed and de-accessed.  This brave little guy has to unzip his shirt and let someone poke a needle into a port that lies beneath his skin.  He had a spell where he could do it like a rock star, but lately he has been really scared and it is even worse when he is hungry.  The staff at Phoenix Children's are awesome and patient, but it is stressful for all of us when he is really scared.  Then we wait for results.  If his ANC is above 750, he will get two types of chemo, then head over to the hospital for a lumbar puncture.  Waking up from anesthesia is generally rough, except for the one time he was cracking jokes with the nurses in recovery.  He is hungry because he couldn't have lunch, but not interested in eating because of the anesthesia and chemo he's had.  He is tired because he got about 30 minutes of sleep when he would normally nap for 2-3 hours at that time.  Then they have to take off his dressing and pull the needle out of his port.  If his ANC is high enough, they might let him leave it in over night so we don't have to access it again in the morning when he comes back for more chemo.  All for now, mama needs to get some sleep.  

Kicking off February!

A brief update on Josiah:  Last Tuesday his ANC was something-teen, on Friday it was 18.  (This just means his body has a very low ability to fight infection.).  Friday he received some red blood cells in hopes of getting him ready for a new phase of treatment starting today.  Well, today his ANC was only up to 396 and it has to be 750 for chemo so they have delayed treatment for a week of recovery.

Here are a few things I'm thankful for this week:

• Thank you to everyone who donates blood and platelets regularly!
• Thank God we live 30 minutes from an excellent cancer treatment center.
• Our washer is being fixed as I type this.  Unfortunately, the dryer didn't survive loads of clothes that didn't have the water spun out as well as the wash machine does.
• Mary finally lost her first tooth (thank you Stella for sitting on her head) and pulled her second one out on her own a few days later.  
• People who pray for us every day.  Your faithfulness means so much to me.

I will leave you with an encouraging story I read this morning.  A regular guy was asked to do a very big task.  A job that would seem overwhelming to many.  Build a HUGE boat and collect 7 or 2 of every type of animal in the world.  God provided what he needed and Noah provided the elbow grease.  After working his tail off to build a huge boat, God "Shuts him in" with his family and the most diverse collection of animals in the world for 150 days.  Now I love my family, but 150 days????  I'm just saying…. And I enjoy going to the zoo, but 150 days locked in a zoo boat????  What might sound like punishment was actually God's grace.  Divine provision and protection for him, his family, and those animals.  This was a very encouraging perspective for me to look for God's grace in overwhelming tasks and difficult circumstances.  Oh, and at the end of the story he gets to leave the boat, eat meat and see the first rainbow!  Check it out for yourself in Genesis Chapters 6-9.

Stella is walking!

Here are some things we are thankful for from the last two weeks:

• Stella is finally walking at almost 15 months!  She took her first steps on Sunday as was walking across the room Wednesday night!
• A wonderful weekend with Aaron's brother Ben and his wife Pamela.  They were such a blessing to each of us.  
• My friend Lenay visited this week and was a huge help while Aaron was out of town.
• Aaron and I went on a date!
• Our dryer works..... :)
• Mary got to pick out a book and have a treat at Barnes and Nobel to celebrate a job well done at school during the second quarter.  
• Josiah had a short visit to the clinic for his chemo on the 14th.
• He had an ANC of 84 this week.  He received platelets in addition to his chemo on Tuesday and got red blood cells Wednesday.  His is still nauseous, but is having less pain.  
• Friends and family that love us and pray for us and continue to encourage us.  Thank you.

Grandparents and gazelles join the journey!

Hi!  Thanks for checking in for an update!  Though blogs can be so impersonal, they sure are a great way to help people stay current with how things are going.  Thank you for caring!

My parents visited the weekend after Christmas and Aaron's mom visited the weekend after New Years.  We are thankful for doctors and medicines, but there's nothing like the natural healing properties of time with grandparents!

Josiah went into the clinic on the 30th for treatment and tests showed his ability to fight infection at an all time low (ANC of 15).  Doing all we knew to protect him for getting sick, he still ended up getting a fever that warranted a trip to ER Thursday night.  The fever didn't last long and his counts were up so they gave him an antibiotic and sent him home.

Yesterday he received a lumbar puncture with chemo and had an ANC of 3648.  Yea!  Today he went in for all day chemo which really meant about 5 total hours of hydration, about 1 total hour of medicines, lots of trips to the bathroom, books, puzzles, toys, snacks, one movie, an attempted nap, and countless "oh my goodness, he is so cute" comments from clinic staff.  :)  Lately, he has had pretty good energy and poor appetite along with nausea and vomiting.  

Mary has a bonus week of Christmas break because her school has something called project week.  All of the children will prepare a project at home and present it to their class when they return to school on Friday.  She completed her poster about gazelles last week (because I knew this week would be crazy) and she did a great job!