All smiles

After Tuesday being our worst night, things could only get better, and better they got....a LOT better.  Isaiah was up most of Tuesday night crying and screaming that his arms and legs were hurting.  Dave stayed up with him for the first half of the night watching Caillou.  

We spent Wednesday and Thursday with Grandma, raiding her fridge.  Isaiah is still requesting certain foods even though he is off the steroids.  He likes to have the food around him, but won't eat it.  Weird.  

Lounging on Grandma's couch

Out for a walk

Hanging out with Grams

Isaiah's wingman

Isaiah still isn't walking much; only a few paces a day.  He is in great spirits and is all smiles.  We managed to enjoy a nice evening at the PNE last night.  Isaiah had a blast!  I was a bit hesitant at first with the germ thing, however I brought the hand sanitizer and figured it would be okay with the open air.  We did some walking around and Isaiah went on 5 rides.  

This one made me a little sick

Baby duck

The pink hammer was chosen by Isaiah.  I know it says "Princess" but I can't change the fact that his favourite colour is pink and purple.  

I'm so thankful for all your prayers.  Isaiah is feeling so much better and I am so thankful for God's faithfulness.  

Still feeling sick

Isaiah didn't need a blood transfusion today.  Thanks be to God!  Most of his counts are looking good, however his immune system is very vulnerable right now.  He's still feeling quite sick.  He moaned all day in pain.  He still doesn't want to walk or talk and spends all of his time laying down.

 
Almost all of his hair fell out today.  He is feeling too sick to even care.  He is off the steroids for now until Maintenance Phase so I'm hoping he will sleep more during the night.

Our next appointment is a week from today for more chemo.  I hope he starts to feel better.  I feel helpless seeing him moan in pain.

Déjà vu

Isaiah is experiencing many of the same symptoms as in phase 1.  He is waking up in the night, isn't walking and isn't talking much.  He will request certain foods but then stare at his plate and ask for something different.  He asks for frequent diaper changes even though he's bone dry because he's constipated.  He's been a bit moody but hasn't had the energy to fuss too much.  He moaned a lot throughout the day.  It is expected to stay this way through September.   

Prayer requests:
1) Adam is a very light sleeper and wakes up every time Isaiah does.  Please pray that he would sleep through the night OR take the bottle so that he could sleep somewhere else.

2) Isaiah has developed thrush again.  Please pray that the medication would work this time around.

3) Please pray for Isaiah's tummy.  He's very uncomfortable and hasn't done a poop since Friday.

4) Isaiah will get his blood counts checked on Tuesday.  Pray that he will not need a transfusion.

Thanks everyone for your continued prayers.   We are doing well and are prepared for the tough September ahead.

Feeling a little sick

Isaiah has been feeling a bit sick these last few days.  His energy level has gone down and he's sleeping a lot more.  On Tuesday night he slept 12 hours and then feel asleep at 9:30am by the bathroom door as I took a shower.  He then took a 3.5 hour nap and went back to bed at 7pm.

Napping at 9:30am after a 12 hour sleep.

He prefers to stay home most days but still manages to find the enthusiasm and energy to go to the park and play with Adam.

Thursday night at Rocky point park

Doing well

Chemo today.  Isaiah did well and his counts are looking okay too.  :)

Painting in the playroom today

His first love?

Isaiah has a crush on one of the nurses.  When David and I got home from a date, he asked us what dating meant.  We explained as best we could to a 2.5 year old and then told him that one day he would find a nice lady to marry.  We asked him who he thought it would be and he said "Emily!".  This is a video just afterwards.

Isaiah is doing very well this week.  He developed thrush because of steroids but other than that and waking up a bit in the night, he is doing very well.  His energy level is good.  

4am mustard craving

It's 4am and Isaiah is eating mustard.  The steroids have been making him want weird foods.  The reason I'm even on the computer typing this message is because he won't let me sit beside him.  I'm supposed to "stay in the kitchen".  These steroids are sure bringing out his male chauvinist side!

Yesterday he was eating mayonnaise by the spoonfuls.  Ew!

In the morning, he has another round of chemo.  His mouth was looking better today and the blister has already healed.  :)

Mouth sores :(

Isaiah has a blister on the inside of his bottom lip.  The rest of his mouth is looking pretty raw as well.  We've been really thankful throughout Isaiah's treatment because he hasn't had any mouth sores up until now.  He's the sweetest boy.  He never complains.  His eyes are looking more and more purple from the chemotherapy and he still maintains his easy-going temperament.  He has been so brave through all of this.  He is my example to be strong in suffering and to enjoy the little things in life and not to sweat the small stuff.  

If you read this one day Isaiah, I want you to know that you have been a wonderful son.  God has been so good to me and I thank Him every day that He entrusted your life into my hands.  God must really love me because He chose to bless me in the most incredible way - giving me you.  Your love has brought me so much joy.  My prayer for you is that you would grow up to know what really matters in life.  God should be your focus and you should live to glorify Him.  I love you Isaiah.  

Jon Bauer singing Life of Worship

http://www.youtube.com/watch?v=1ZN6q-Wf1ms

Feeling the effects

Isaiah had more chemotherapy today.  It was a long day and very busy at the outpatient clinic...60 patients, wow!  We were there for five hours.  Thankfully Isaiah took his nap during his 90 minute chemo drip.  

 He is starting to feel the effects of the steroids.  He is extremely irritable and moody.  He is not sleeping well either.  My poor little Isaiah.  I love him so much and feel sad that he has to suffer like this.  He's done so well and I'm thankful that he has been successful in his treatment so far.

Chicken souvlaki

The last time Isaiah was on steroids, he had an obsession with chicken souvlaki.  Yesterday he woke up after his nap asking for it.  Do the steroids really kick in that fast?!  He hasn't talked about souvlaki since being off the steroids.  I tried offering him something different but he wouldn't eat anything.  The nutritionist told me not to make food a battle because it is very temporary and he doesn't understand why his body is feeling the way it does.  The steroids affect his mood and cravings so I'm supposed to go along with it until he goes back to normal.  So, I ordered in enough for three days.  I'm going to have to learn how to make greek rice.  Anyone have a good recipe??  

Another thing he has been wanting these last 2 days has been "hot bread" (a plain piece of toast)...weird.  He also asked for a spoonful of butter.  He says "mama, just a little lick please?"  Haha.  This is going to be a long two months.  

Some new drugs

Isaiah started Day 1 of Delayed Intensification today.  We are told that this phase will be a tough one, similar to round 1.   He is on some new chemotherapy drugs along with the steroids again.

This week is expected to be good.  His mood may turn sour by the weekend due to the steroids, however his counts won't really start to plummet until mid month.

We are praying that Isaiah won't feel too sick this phase.  He didn't walk for a month in phase 1 and we're really praying that this doesn't happen again.  We won't be able to have anyone around for August and September.  His counts will be too low and we don't want to risk him catching something and ending up in hospital.

I'm so thankful that Isaiah has had a great summer so far.  Water parks, the zoo, Whistler, catching his first fish yesterday!!!.....we are very blessed.  We will enjoy these next few days together as a family and will prepare for a quieter August and September.  

Where are we?

This is where we are in treatment.  Isaiah started Delayed Intensification (round 4) today.

Induction (35 days)
drugs: Intrathecal Cytarabine
          VinCRIStine
          Dexamethasone
          Pegaspargase
          Intrathecal Methotrexate

Consolodation (28 days)                        
drugs: VinCRIStine
          Mercaptopurine
          Intrathecal Methotrexate

Interim Maintenance I (56 days)
drugs: VinCRIStine
          Methotrexate
          Intrathecal Methotrexate

Delayed Intensification (56 days)                               <--------  WE ARE HERE  Day 1
drugs: Dexamethasone
          VinCRIStine
          Doxurubicin
          Pegaspargase
         Cyclophosphamide
          Thioguanine
         Cytarabine
          Intrathecal Methotrexate

Interim Maintenance II (56 days)
drugs: VinCRIStine
          Methotrexate
          Intrathecal Methotrexate

Maintenance (85 days)
drugs: VinCRIStine
          Dexamethasone
          Mercaptopurine
          Methotrexate
          Intrathecal Methotrexate

Repeat Maintenance for 3 years from when Interim Maintenance I started 
....which means treatment ends in June 2015