Sunny day activity

Isaiah and Adam painting a box

He ended up in his underwear by the time we finished our project

Easter Sunday

One year ago, on April 8th, Easter Sunday, Isaiah hunted for Easter eggs with cousin Aaliyah at Grandma's house.  I felt frustrated for Isaiah as he worked so hard to retrieve the chocolate eggs.  He appeared exhausted and could not lift himself up one stair without asking to be carried.  After a short hunt and few eggs in his basket, he was content with what he had collected despite my urging to look in the places where there were still eggs.  He was tired and uninterested.  What I wouldn't find out until the next day was that his heart was enlarged, compensating for the lack of blood he had, in order to pump enough oxygen through his body.

This past year has been the most difficult year of my life.  Anyone who has a child of their own can understand how hard it is to see their own child hurting.  I remember some nights after Isaiah had received chemotherapy treatments, he'd moan in pain throughout the night.  There was nothing in my power to make him feel better.  All that I could do was hold his hand and be with him until the hurting subsided.

That said, it has also been a year of rich blessing.  We grow during times of suffering as we learn to fully rely on God, knowing that His plans are ALWAYS greater than our own.  After going through this experience, I have discovered that Christ is sufficient.  The way I would like my life to play out has no significance.  God is the author of my destiny and it is so freeing to know that He has a plan for me and my family.  The things of this world are all too temporary.  Even life itself is frail and there are never any guarantees.  It is very easy to be engrossed in the present life.  When God allows these trials, I am reminded that my life is not in my own control.  In order to live an abundant life, I need to keep my focus on Christ.

I am so thankful for all that I have and am feeling so richly blessed this Easter.  God is healing Isaiah and has a special plan for his life.  I am looking forward to this year - to see God working in our lives.  Thank you Lord for all that You Are!

Easter Sunday 2012

Easter Sunday 2013

And of course, we cannot leave out a picture of Oats

Hawaii!!

This month, we went to Hawaii for a week with Dave's mom.  It was such a great trip.  Isaiah and Adam absolutely loved the water and digging in the sand.    

It was a big stress getting travel insurance for Isaiah before we left.  Because he had been hospitalized in February, he did not meet the "stabilization period" for most insurers.  Thankfully we were directed to a company that covered us.  Ironically, it was Adam who ended up in the clinic with an allergic reaction.  We're still not sure what caused the reaction.  

I'm having some trouble uploading the pictures but some of our highlights included spotting a whale on our boat ride, endless digging in the sand, swimming with the fish, visiting the Honolulu Zoo and Dave surprising me with a helicopter ride around the island for our 5 year wedding anniversary.  

 

 

 

Still neutropenic

Isaiah had a check-up with his doc today.  Unfortunately, he is still neutropenic (ANC of 0.19).  He is looking great and feeling completely normal but will be held off his oral chemo meds until his ANC rises.  His immune system is extremely vulnerable so we will continue to do a lot of hand washing and avoid seeing anyone.
Adam is being dedicated at church this Sunday.  We still plan on going but will probably leave right after the dedication so that Isaiah isn't hanging around crowds of people.

Home from the hospital

Isaiah is home!!
He came home yesterday...for my birthday.  What a great birthday present!

The steroids seem to be affecting him a bit this time around.  He had a few major meltdowns and has been super hungry.  He has been waking up around 4am asking for food.  I thought it was just because we were in hospital but he woke up last night at home, asking for breakfast.  Oh well, it's nice that steroids are only for 5 days at a time.  We can handle that!

I came across a beautiful Hymn while Isaiah was in the hospital.  It was read by Ravi Zacharias (an amazing Christian apologist who has been a great source of encouragement to David and I).

He Giveth More Grace by Annie J. Flint

He giveth more grace as our burdens grow greater,
He sendeth more strength as our labors increase;
To added afflictions He addeth His mercy,
To multiplied trials he multiplies peace.

When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources
Our Father’s full giving is only begun.

His love has no limits, His grace has no measure,
His power no boundary known unto men;
For out of His infinite riches in Jesus
He giveth, and giveth, and giveth again.

pictures

 

Face painting with Jader
(our friend visiting from Brazil)

We were bored so we
decorated Adam

Adam taking Isaiah for a buggy ride

Still in hospital

So Isaiah is still in the hospital.  He seems completely well except for a cough.  Today he was running down the halls of the oncology ward giggling.  Unfortunately, we need to remain in hospital until his ANC reaches 0.2 (normal is 1.5-8.5).  On Sunday, it was 0.12, Monday 0.06, Tuesday 0.07 and today 0.03.  So it seems , it's on a bit of a downward trend.

Although he seems better and his blood cultures came back negative for a bacterial infection, when levels are this low, it is safest to remain in hospital.  He has no immunity to fight off potential infections.  If he were to catch anything, it could be life threatening.

Every 6 hours, he is given antibiotics through his IV to cover his body against any type of potential infection.

To give you some background, we were at Children's Hospital on Friday to get his monthly IV chemo.  They saw that he was sick and discovered a fever.  He slept in my bed the night before because he was sick.  He felt warm, but not feverish.  Chemo was cancelled.  He received antibiotics instead.  That night, he spiked a fever again.  We came back Saturday morning for more antibiotics.  Fever again Saturday night - more antibiotics on Sunday.  This is normal protocol with cancer patients: to receive antibiotics when a fever spikes.  Sunday, they decided to admit Isaiah.  He didn't have a fever that night and hasn't had one since.

Unfortunately, Isaiah is isolated to his room.  He can go for short walks...or runs through the ward as long as he wears a mask.  I'm so proud of how well behaved he is.  He never complains and accepts all circumstances with optimism.  Today, Isaiah and I changed his bed three times.  He kept spilling things.  (They really need an eating section in those rooms.)  He loved collecting the linens down the hall.
He fills his days playing cars, watching Caillou on his ipad and sculpting mud pits for his cars with Playdoh.

Pray that his ANC spikes so that we can go home!!