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.