Random Cravings

I've been through similar seasons of strong food preferences three times before. Sarah once drove around Wichita in search of fried chicken. In the middle of the night!

That helped prepare me for this: "Daddy is it morning time yet" (6am as I sat down with my coffee to read the Word)?
me: Yes Josiah
J: Daddy I was thinking this morning about hotdog*, cucumber, and orange juice...........Can I have those for breakfast Daddy? Did Mom get hotdogs Daddy?
me: I think? we can do that, I'll have to check

Later during preparation: "How many hotdogs Mr. Brown (a play on the nickname Buster Brown)?"
J: How about 3 or 4.
Sarah (smiling): We usually do 1 or 1/2 of one
J: OK (ornery smile), how about 2 and 1/2 then

Background info- He knew that we were out of hotdogs, but he also knew that when he went to bed Mom was gone on a grocery shopping trip. He's assumed the role of food inventory manager for his go-to items and had ensured that I wrote hot dogs on the shopping list when he found out they were all gone.

*Sarah wanted me to make sure you knew they are nitrate, nitrite free beef franks

A day in the life... and musing from a mommy.

Artist at work.

Josiah is being such a trooper!  He only seems to deal with nausea a day or so after his chemo treatment.  He is always fatigued.  He sleeps more than usual, but is just not very physically active.  He walks some, but rides in the stroller on longer adventures.  He has headaches and body pain and we are so thankful that he is able to communicate how he is feeling.  A typical day includes lots of resting on the couch, a walk/stroller ride with Stella around the neighborhood, time spent with books, play dough, animals, puzzles, coloring, and Mr. Roger's neighborhood.  :)  He also has strong food preferences that remind Aaron of living with a pregnant wife.  A typical week has included a date with Ms. Linda at home while the family attends life group, one chemo treatment day, and a morning at the zoo.

I recently took Mary to Verrado High School's production of "Annie".  This was her first live musical and we both had a great time.  She absolutely cracked me up afterward with her very convincing impression of Mrs. Hannigan!  She should have a wonderful time in her theatre club in the spring.  We also attended a baby shower this weekend and tried sock rollers in her hair last night.  She has been parading around with a head full of curls this morning rivaling "Annie" herself!

Girl time!

Stella cruising, but not walking yet.

That's it for my "how we are doing" update.  From here on are just "Sarah's musings" :)  Sharing on this blog has helped me to process my thoughts and it is my hope that it benefits others as well.

A big theme in my walk with God right now has been "same principles still apply."  What a relief to know that although our circumstances have changed, the principles that we live by are just as relevant in every season.  Here is a snapshot of things that just don't change.

• Relationships are a priority.  Pursuing unity within our church, within our family and within our marriage is important. 
• Asking "What does it mean to be faithful today?"  Same question.  Different answers.  Everyday.
• Put the needs of others before your own.  Even when your needs seem high, it is good for the heart to focus on the needs of others.
• Trusting that God is in control and engaged in every detail of our lives for His purposes.
• Having gratitude IN every circumstance (not FOR every circumstance).  How we view our circumstances is always a matter of perspective.  Whatever is going on, whether a paper cut or the death of a loved one, a person's "mountain" is a big deal to them.  We all need love and kindness.

Speaking of love and kindness, I have been so thankful for the ways people have helped me lately.  A few have helped me "think" by writing things down when I was was too scatter brained.  Some have helped me pray by praying with me.  Many have helped me be available to my family by watching kids and taking on domestic tasks.  Others have helped with practical gifts and things to keep Josiah occupied during his down time.  Last but not least, many have helped remind us that we are loved and not alone.  I have received so many thoughtful messages on the phone, computer, and in person.  I want to express how grateful I am for each note, message and e-mail.  Thank you! 

Two weeks down!

So his third time wasn't exactly a charm, but he did have a great appointment today.  Sporting a red tie dyed shirt made for children receiving chemo, he marched into room #9 ready to be brave and pick a sticker.    His red blood cell count went up on his own so he didn't have to get a blood transfusion.  His ANC dropped more than 50% (expected).  When I asked how "germ-o-phobic" we are really supposed to be Dr. Dana got serious and said he is in "lock down".  Home and clinic, that's it (with the exception of being outdoors away from crowds).  It was reassuring to know that I wasn't going off the deep end with sanitizers and avoiding taking him to stores.  On the upside, Josiah will be getting more regular pain relief which should brighten his mornings a bit.  The first week of December he will have another spinal tap, bone marrow biopsy and CT scan to see how he has responded to the induction phase.  His social worker said he will get to "Make a Wish" when he is done with treatment in a couple years with the Make a Wish Foundation.  During lunch, just for fun I asked him "If you could go anywhere and do anything what would you like to do?"  Without hesitation, he replied "Go to a resraunt, and eat this," as he pointed to his food.  Now that's contentment!  :)

Brief update on Josiah

Just a brief update, I think the cumulative effects of the chemo are starting to hit.  Josiah has been pretty tired and is having a head ache that comes and goes.  He says "my brain hurts" or "my forehead" hurts.

We have a zoo 12 minutes from our house that we gave him a membership to for his birthday.  I took him and Stella yesterday for a short outing and he LOVED it.  It was definitely a moral boost for all.

Stella has been fussy with a fever since last night.  Please pray that we keep whatever she has contained  and that she gets better soon.  I had been praying that our family stayed healthy for one month and that prayer was answered with a no.  Ah, where where the rubber meets the road.  Faith is being sure of what we hope for and certain of what we cannot see.  My faith is in the one who hears and is able to to exceedingly abundantly beyond all we can ever ask or imagine.  God is good all the time and His ways are higher than ours.  May His will be done in our lives.

Thanksgiving Season

Josiah was very brave today during his first drip to the clinic.  He was asleep and Aaron was with him during his first treatment in the hospital, so administering chemo through his port was new to both of us.  His counts were good overall with the exception of some anemia, but not enough to warrant a transfusion.  He has been having some headaches, nausea, decreased appetite, and is getting a little stir crazy, but still usually a happy little man.

We also found out that although the preliminary report on the bone marrow came back clear, the results from the complete analysis showed some cancer cells.  This will not affect his treatment plan, but does give us reason to be grateful for the detection of his lymphoma before it had even more time to spread.

I had thought that these weekly treatments would stretch to monthly treatments after the first few weeks of induction, but was told today to expect weekly appointments for about 8-9 months.  This really caught me off guard and I'm still processing the implications of this news.  I recently talked with another mother whose daughter has been in the hospital since February.  Stories like this keep reminding me that no matter what is going on, it could always be worse and there are always reasons to be thankful.  I don't want to minimize or magnify what Josiah is going through, but rather keep a healthy perspective.

On that note, I am so thankful for the truth and encouragement from scripture that has helped keep my head on straight these last couple of weeks.  I am also grateful for the prayers of friends, family, and even strangers.  While driving the other day, I was so humbled and encouraged by the awareness that so many people are praying for Josiah and our family.  May your faith be strengthened too as you join us on this journey!

Josiah's day concluded with a spinal tap with chemo and his doctor called tonight to let us know that his CSF (cerebral spinal fluid) was still clear of cancer cells.  As Mary didn't have school and Aaron was back to work, the girls got to spend the day with friends and had a great time.  We came home to a house sprinkled with thoughtful little surprises (like dino nuggets in the freezer!) that made us all feel so loved.  Note to self:  When you world gets rocked, give your house keys to friends.  THANK YOU!

He's home!

A picture is worth a thousand words and this shirt says the rest!  Look out world, he's back.

Josiah is doing well.  He is taking his medicine like a champ and in good spirits.  He has still been tired, but did take a short bike ride today.  Since having his tubes and adenoids removed, his voice has been clearer, his hearing has improved, and he can now breath easily through his nose!  Since his first chemo treatment, his neck is already noticeable smaller!

He is drinking half almond milk and half breast milk flavored with chocolate Ovaltine.  At a friend's suggestion, we looked into the use of breastmilk for cancer patients.  There is not a lot of scientific research about it, but the general consensus is that it won't hurt and should help boost his immune system.  The oncologist had reservations at first, but once he realized my milk was an option rather than banked milk he was very supportive.  I praise God for his perfect timing.  We received Josiah's diagnosis on Stella's first birthday.  Being one, we have switched her to store bought milk and rather than weening her, I have been able to maintain my supply and pump milk for Josiah.

Back to the photo...did you notice the hospital pants?  We found that if you squint in low light they look remarkably like a light reddish K-State purple.

So how is everyone else doing?  Getting flu shots, feeling rested, and eating well in a clean home thanks to an amazing army of friends and church family.  Stella is sporting her first pair of shoes and thinking about walking more every day.  Mary is doing great in school and having good dialog with mom and dad about all that is going on.  Aaron goes back to work Monday, but is holding off traveling for now.  Sarah is looking forward to a visit from her friend Carmen, from Kansas this weekend.  This trip was planned months ago and couldn't have been better timed.  We have so much to be thankful for!

Day 9 Update and FAQ's

It's been 2 days since Josiah had his first chemo treatment and so far he's physically been largely unaffected other than being more tired than normal. He's in good spirits and still sports his trademark smile when he's well rested. 
He takes a steroid as part of the overall treatment plan that is believed to be the source of his occasional grumpy-old-man mood swings.
Talking with the older kids and nurses on our wing many have said they experience the worst side effects 5 to 7 days after each treatment.

I've captured some of the more frequently asked questions and sprinkled in a few unasked to keep you on your toes. 

FAQ's
Question: When is Josiah coming home?
Answer: The current plan is tomorrow 11/7

Q: How many chemo treatments has he had in the hospital?
A: 1 so far. On his birthday 11/4 he had his first real dose and another 1-time dose is scheduled for tomorrow (called a PEG). To unconfuse those of you paying close attention, technically he did receive a low-dose of chemo during his spinal tap on 11/2 but none of the medical professionals seem to count that one.

Q: Where and how often will his future treatments be administered?
A: The plan is for him to receive future treatments in the outpatient clinic at the hospital. For the first month (called the induction phase) those treatments are weekly. He will not getting chemo treatments at home.

Q: Has he played with all of his birthday gifts yet?
A: Not a chance. Not even close. He'll have to work hard to check this box before he turns 5. The joke at the hospital is we're going to have to rent a U-Haul to get it all home. He's a loved little boy.

Q: Is he expected to be re-admitted to the hospital?
A: Not if things go according to plan. He will only be re-admitted if there are complications such as troubling results from the blood test he'll get during each visit to the outpatient clinic or if he were to get an infection.

Q: Will the tumors be surgically removed, will he get radiation, or just chemo drugs?
A: The goal is the chemo drugs will kill the cancer cells, the tumors will dissolve and be flushed out of the body without surgery or radiation.

Q: How people-restricted will he be?
A: For the 1st month he can't go to large public gatherings (church, school functions with Mary, rides on the Phoenix subway) and after his 4 week assessment he should be OK to go anywhere (except the Phoenix subway) as long as there aren't known sick people there

Q: How long will the chemo treatments last?
A: He's on a 3 year treatment plan. Even if the cancer appears to go into remission the treatments continue.

Q: When will we know if the treatments are working?
A: At the end of the 4 week induction phase, he'll go through a day of tests (repeating the same tests done during this visit) to determine if the cancer cells responded as expected. The outcome of these tests will determine the approach for the subsequent phases of treatment.

Q: Will he lose his hair?
A: Probably. He's already talking about it and I think he's fine looking like Daddy for a little while.

Q: What things will Josiah miss the most from his hotel room stay (we initially called his hospital room a hotel room and it has stuck)?
A: The dino nuggets (dinosaur shaped chicken nuggets- need we say any more about how awesome this hospital is?), the red button (nurse call button that he's not afraid to use), eating in bed, the playroom, mom or dad's undivided attention, unlimited supply of apple juice, the morning look out his 7th story window overlooking Scottsdale to answer the inevitable "is it wake-up time yet?".

Q: What things will he miss the least?
A: His tree (the IV and medicine dispensing unit on wheels with lines running to his medicine button that goes everywhere with him), blood pressure checks every 4 hours, not getting to regularly see his sisters, being confined indoors

Birthday Boy

Mr. T here

 

Thank you to all who have extended birthday wishes to our special little man who turned 4 years old today. We have been blown away with the showing of love and support.

 

At 4:23pm Josiah received his first full-fledged chemo treatment. He was asleep as the nurses delivered it through a direct push into the medicine button (being administered by nurse Sherri on the left).  He never knew it happened.



The side effects vary widely in their timing and intensity, but I'm blessed to report that 4 hours later he was in high birthday spirits (picture below) and as we turn out the lights is still exchanging witty banter with the nurses.

As an aside, I've a new appreciation for medical professionals faced with tough tasks that really suck. After nurse Sherri informed me that his chemo meds had arrived on our floor, she explained the protocol for administering the different medications. During the explanation, there was an unmistakable sadness in her eyes. I can only speculate what was behind it, but I think her time as a nurse on this wing of the hospital has allowed her to see first hand the effects of what she was about to put into my son's body. She's been our nurse for at least 2 shifts, giving her 24 hours to get to know one of the most amazing little boys our creator has blessed his creation with. I think if she had a magic nurse wand, she would fix Josiah without making him sick. Without that wand, however, she knows the only way to really heal his body is to temporarily wreck it. I think I'd wear a "Cancer Sucks" button if I had her job too.

Risk Factors

I consider myself a risk taker.

I'll overbid my hand in pitch on the promise of a helpful card or two from my partner (and yes go set my fair share), invest in individual company stocks, see a light turn yellow and be more likely to speed up than slow down, set bold goals that might not be attainable, see the potential in people and tell them about it.

All things I've counted as risky were put in their place as I sat in Josiah's room and listened to a surgeon explain the risks of what he called a "rather routine" procedure to implant the medicine button.

Risk for our little boy has gone from the likelihood of playground scrapes and bruises to being measured by %'s of surgical procedure complications. The surgeon explained how the medicine button would be implanted in Josiah's chest with a feeder line plumbed into a vein near his heart. As I listened to him explain first the procedure and then the risks I had to excuse myself to get water and take a seat. This was partially because needles and blood make my knees wobbly but even more so because it started to hit me. I began to grasp the realization that in spite of the fact Josiah is in the care of some of the best pediatric physicians in the world, at many steps of this journey the risks and side effects can be life altering.

As the realities of this new season of life began to sink in, I had clarity that the risk factors involved with my "risks" are trivial. The decisions of whether to buy shares of Facebook vs Pandora are meaningless. Whether I win the bid for 8 or lose it with a conservative bid of 6 isn't important. People are important. Taking risks for people matters.

Ecclesiastes 3:1 There is a time for everything, and a season for every activity under the heavens:
3:4 a time to weep and a time to laugh, a time to mourn and a time to dance

Thank you for weeping and praying with us through this season. Our hope in the living God gives us courage to look forward to the laughing and dancing seasons ahead.

Test results and treatment plan

Thank you so much to each of you who have been praying and anticipating results and treatment details alongside us.  There was a lot of information and this is all very new to me, but I'll try to communicate what I learned today as best I can.  

First off, cancer means there are cells that are growing too fast somewhere in the body.  Josiah's official diagnosis is T-cell Lymphoblastic Lymphoma (T-NHL).  They believe his cancer started in the Thymus and spread to the lymph nodes next to it and then into the lymph nodes in the neck and adenoids.  They didn't find any cancer cells in the bone marrow or spinal fluid!  All this information determined his disease is at stage 3.  Standard treatment for stage 2 and 3 is the same.  There will be a 4 week induction period where they try to wipe out all the sick cells and put him into remission.  At that point, they evaluate his response and decide what course of action should follow.  We can expect to better understand the nurses' buttons that say "cancer sucks" during the first 6 months of treatment.  For the next ~2.5 years treatments are less intense, hair can grow back, and a kid's life can feel more "normal".  Children are resilient and researchers have made remarkable strides in achieving a high survival rate.

Josiah's golden birthday (turns 4 on the 4th) will mark his first chemo treatment.  He may be released as early as Thursday depending on how he does.  After that, it is weekly outpatient visits for the next few weeks before the next evaluation period.  

This last week I have thought about life and death and hope and truth in new ways.  Who do we run to for reassurance?  Where do we go when we get that lump in our throat?  What do we do to avoid the pain?  When the rubber meets the road, where does our help come from?  

Psalm 121:1 "I lift up my eyes to the hills- where does my help come from?  My help comes from the Lord, the Maker of heaven and earth."

Isaiah 41:10 "So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand."

No news, but great people

We missed the doctor by about 20 minutes tonight during our hand off so we will visit with him in the morning.  It sounds like we will learn test results and a treatment plan then.

Aaron was with him during his spinal tap and port procedure.  All went well.  Josiah was just one of several cases that got pushed back or delayed yesterday.  Aaron said every person involved in Josiah's procedure today was not scheduled to work, but chose to come in today because there were a lot of kiddos that needed care.  Phoenix Children's is amazing because it is full of amazing people.

Take the cafeteria for example.  The food is better than a lot of restaurant food and the atmosphere is peaceful and interesting.  If you are lucky, a gentleman at the Italian counter will whip you up a dish with a smile and the flare of a performer.  He remembered me the second time I came through (this time for the seafood special).  I thanked him and asked his name.  "YO ADRIAN!"  I don't believe that's his name, he just loves it when people walk up and call out to him like that.  :)

Slow Going

Friday wrap-up

Today was supposed to bring answers. It hasn't
Josiah was scheduled for surgery at 2pm to get the medicine button implanted, have a spinal tap (take a sampling of spinal fluid as a test for cancer cell activity in the brain) and receive his first dose of chemo.
At 645 the doctor came to Josiah's room and told us it wasn't going to happen today, they had complications with a procedure earlier in the day that put them behind.
The toughest part was that he couldn't eat after midnight in preparation for the procedure. He tore through a PBJ sandwich, a brownie, peas and cantaloupe as soon as we got the all clear.
He's been rescheduled for 230pm tomorrow.
We close today with no new answers from yesterday's testing. Last night the Dr came by to walk us through the  PET scan which confirmed tumors in the nasal area, throat and upper chest. The initial results indicate no tumors in the abdomen or testicles.

Our little trooper is hanging in there. Below he's putting stickers on the Highlights magazine from Grandma Nancy

Boo!

Last year today I left the hospital with a newborn.  This year I arrived at the hospital to find a happy little transformer who had "won" several little prizes at a morning carnival with Daddy.  Someone donated enough costumes for every child to choose one to keep.  I could go off about how amazing this place is, but I'll save that for another time.

He had a PET scan, CT scan, and bone marrow biopsy today.  Everything went smoothly and hopefully I will be able to update you with results in the next couple days.  Tomorrow he will have a Spinal Tap with some chemo.  Even if they don't find lymphoma in the spinal fluid, they have found it best to do some treatment rather than risk missing it and later find tumors in the brain.

He is also scheduled to get a "medicine button" at 2pm.  I better explain that one because I made the term up.  :)  This is a port that will go straight into a major artery rather than through an IV.  He is so excited to have both hands free!  

I was also able to get a little better idea about long term treatment expectations and was told 3 years of monthly visits in addition to medicine taken at home.

I am overwhelmed by the ocean of care and support of so many people.  Not a "drowning in the middle of it" overwhelmed, but a "standing before the vastness of it" overwhelmed.  I am grateful for each kind word, deed and prayer by our friends, family, and those we have yet to meet.  

Phillipians 4:6-7 says "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."  

I get it.  In a way I never have before.  Praise God.