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!!

Sick in hospital

So just a brief update (I will try to be more detailed tomorrow perhaps)...

Isaiah is in hospital.  No need to worry!  He was admitted on Sunday night because he's had a fever for a few days as well as other flu-like symptoms.  He is in isolation on the oncology ward to protect him from germs.  He was doing a lot better today so I'm hoping that he will be discharged tomorrow.
I will keep you posted.

Making our way to the ward. 

When Isaiah learned he was being admitted, he tried to convince the nurse to let him go home by repeating "I'm all better, I'm all better!", as he hacked out some nasty coughs.  They learn to lie at such a young age!  

Looking much better this morning

  

Update

It's been a busy last few weeks so I haven't found the time to post an update on the blog.  We are thankful that Isaiah officially started maintenance chemotherapy on December 20th.  He is still on a number of medications (Mercaptopurine every day, Methotrexate every Friday, Vincristine every 4 weeks, Lumber puncture every three months, Steroids five days every four weeks and antibiotics on weekends), however this phase of treatment is not intensive.  He will have lower than normal immunity for the next two years but not low enough to quarantine him.  We will still follow normal protocol of taking him to emergency if/when he spikes a fever.

Isaiah is doing great and is back to his normal life.  One of his favourite routines is church on Sunday mornings.  He loves Sunday school and looks forward to showing off the projects that he completes while Dave and I are in service.  

We also enjoy going to StrongStart.  Isaiah loves painting and enjoys singing during "circle time".  Adam is also having a blast.  His first year of life was kind of boring since Isaiah was diagnosed.  

Adam, Isaiah and Aaliyah at school

Isaiah painting with cousin Aaliyah

We're trying to go swimming more often.  Both boys love the water, Adam especially.  He was so cold but refused to get out of the water the last time we went.  

We were able to enjoy a few days at the mountain.  

Here are some more cute pictures.  

Family photos