The bottomless pit

The steroids that Isaiah is taking are causing him to eat amounts that are unnatural to his body size.  He eats continually throughout the day.  There is no rest.  I am a short order cook, constantly in the kitchen finding something that will satisfy his cravings.  He eats to the point where he is in pain.  His belly is distended and hard.  If a certain food is not available, he melts down (also an effect of the steroids).  A typical day would look like this:

Wakes up at 6am. 

-hard boiled egg on toast

-full bowl of oatmeal

-1 yogurt

-1 bowl of soup

-sit on the couch "mama, I want something".  "What do you want Isaiah?" "Ummmmm, chicken and rice".  

-chicken and rice

-cheese

-lunch meat

-slice of bread and butter

-soup

-popcorn

-bowl of cereal

-noodles

-lunch meat

-crackers

-more cheese

-more chicken and rice

10am: Renee is tired of documenting food

He will not eat any fruit or vegetables and will have big meltdowns if we're out of something.  This is not Isaiah's personality.  He is an extremely well-behaved little boy.  The steroids have caused him to have minimal control of his emotions.  I have been directed by the doctors to comply with his wants.  Their reasoning is that Isaiah's brain is telling him he is hungry and is craving specific things.  Being only 2 years old, he cannot comprehend what is making him feel this way.  We do whatever we can to distract him for as long as we can but all he can think about is food.  

First out-patient visit

Isaiah had his first out-patient visit yesterday to get his chemo.  His blood counts were very good so he did not need a blood transfusion, yay!  He seems to be sick today from the chemo and has a severe diaper rash.  The rash was bleeding a bit.  It looks so sore.  Chemotherapy acts by killing cells that divide rapidly.  This not only includes the leukemia cells but also the good cells in our bodies such as the ones in our gastrointestinal tract, hence the rash.  Please pray that this goes away because it is very painful for him.  

Little reminders

I felt sad for Isaiah today.  We used to participate in so many activities outside the home.  Now, he can't do any of the normal things that he used to do regularly.  He has no energy to walk more than 10 feet or play with his toys and isn't allowed to have any friends over because of his low immunity.  In the afternoon, Isaiah said to me "let's call Micah". When Isaiah saw Micah, he was smiling from ear to ear. **Check out the picture.  He was so happy to see that Micah shaved his head to match his new hair.  God uses those little reminders to say that He is still here.  Thank you Micah!

The Skype call

Isaiah's friend "Micah"

Thank you!!

Thank you all so much for blessing our family during this difficult time.  Isaiah received lots of fun things to keep him occupied.  We also have a freezer full of food.  Many of the meals are unmarked so I cannot thank you personally.  So, THANK YOU!!      

Hair cut

Today, we had a hair cutting party!  Uncle Nick, Dave and Isaiah got their hair cut.  We all acted as barber, except for Isaiah of course.  Looking good boys!

Since coming home, Isaiah has continued to feel lethargic and tired.  He doesn't like to do a lot of walking and seems mostly uninterested with his toys.  He mainly rests on the couch between naps.  He asks to go on car rides, so we've done that a few times.

He's been very emotional and hungry because of the steroids.  He constantly asks for food.  The doctors have said that he will be gaining a lot of weight.  Today, he asked to eat butter.  What an interesting craving!

Our stay at BCCH from April 9th to April 18th.

Waiting for the doctor on April 9th in the Emergency at BCCH.

The day before Isaiah was diagnosed.  On our way to Easter Sunday service at Willingdon Church.

Diagnosis

Twelve days ago on April 9th, 2012, we took Isaiah to BC Children's Hospital after he woke up with a nose bleed and small bruising around his left eye.  I had taken him to the clinic a few times within the last month because his cough wouldn't go away.  He also had an ongoing low-grade fever and night sweats that persisted for two weeks.  He seemed very lethargic and constantly wanted to be carried.  Even so, the doctors assured me that it was only a virus and that it would go away in time.
When he woke up with the bruising, I decided to call 8-1-1.  The nurse identified the bruising as "petechiae" and urged me to take him to Children's Hospital.  We waited five hours at BCCH before blood work was done.  The doctor thought he looked very pale, however I didn't notice because Isaiah was always very fair (compliments to his father's genetics).  I knew when the doctor said the blood doctor was coming to talk with us that something was wrong.
Dr. Ann Van Eyssen told us that his platelets and red and white blood counts were very low.  She was pretty certain it was leukemia but wanted to do a bone marrow biopsy in the morning to be sure.  We were admitted and spent the night at the hospital.  

April 10th, the bone marrow biopsy confirmed the cancer.  Acute Lymphoblastic Leukemia (ALL).  That night Isaiah had a Venous Access Device (VAD) put in.

April 11th, Isaiah received his first lumbar puncture, where chemotherapy was put into his spinal fluid.  He then had more chemotherapy that day through his VAD.  They also started him on steroids.

April 14th, more chemo.

April 18th, more chemo.

And then we were discharged, sent home with a bucket full of drugs and a treatment schedule that wouldn't be over until 2015.  My little Isaiah will be in school when this is all over.