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

Whistler

A nice time in Whistler as a family before dreadful phase 4 starts.