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.  

 

 

ECG and ECHO

Isaiah had an ECG and ECHO to make sure his heart is ready for Phase 4.  We haven't heard anything so I'm going with no news is good news.

Molluscum

At Isaiah's last appointment, they discovered that Isaiah has a harmless skin virus called molluscum.  I know you are all going to google it.  I did too and it sounds worse than it is.  He has two bumps on his face.  Although some websites say that it is contagious, the doctors have said not to worry and that it is not contagious so please don't treat Isaiah like an alien.  It is very common in young children who are immunosuppressed. I am wondering myself how he contracted this virus.  All I remember is that after he had a fall on his forehead at the playground, a tiny red bump accompanied his giant bruise and scraped forehead.  It never went away.  That was probably a month ago.  


They cause him no pain.  It can become a cosmetic issue for some children but considering he's only 2.5, he's not exactly looking in the mirror every day.  Some children are covered.  Please pray for healing.