Hard week

This week as a bit harder in Caine.  He was getting sick once a day this week.  He took it good but get so worked up around taking Oral meds he will sometimes just puke.  We are working on plans to work through this and it is slowly working.  In talking to the doctor and nurses we are trying the dissolvable tablets of Zofran vs the liquid as the liquid gave him alot of anxiety and sometimes puking from it as it worked him up so much.  The dissolvable tablets work great so one less thing to worry about.

Saturday was a non puke day and so far today as well.  If he gets too warm or exerts too much it seems to make him have an upset stomach.  Next week is a light week.  He has one med, Vincristine, that he has had before and did well on and his  Erwina shots which has no effect on him.  So hopefully he will feel good and get to school for most of the week (as long as his counts dont drop).

MOM SIDE COMMENT: This became very real for me this week with him puking and having alot of discussions with him around puke.  I try my hardest to make it as light as possible but so hard when all you want to do is make it go away.  My heart just broke this week. 

Also wanted to mention my great heart friends in Saskatoon being lead by Anna Maton are throwing us a fundraiser on October 5 at the Capital in Saskatoon.  Tickets are $25 before Sept 20 and $ 30 after.  There is a magician at 8 and band at 9.  Starts at 6 stay as late as you like.  Kids are allowed until 8.  We are hoping Caine will be good enough for us to attend....

As we work through our week I will update.  Keep ths prayers coming for Caines continued treatment and health.

First transfusion today...

Caine got though last week pretty well after Monday.  Caine is starting to feel the effect of chemo a bit as he has been sick.a few times.  I know Caine is a silent sufferer so hard to catch him before to ensure he doesnt get sick.  Just have to keep pressing Caine to be honest on how he feels.

Since Sunday Caine has been getting headaches when he wakes up in the morning.

Over the weekend, Caine had a sleepover with his friend Kian and I took Brody on a mini holiday to stay in a hotel over night with a pool (he had his friend Logan join and my friend Tamara joined).  We also went to a labour day party at Bob and Lynn's place in White City.  The boys got to swim and play with their friends...Caine was very energetic that day.

On Monday we had a chill day.

Today was the first day of school and Caine was able to attend in the morning.  He was happy to be back at school with his friends and just be a kid.  It is hard for Caine as he always asks why did I get cancer why do I have to go through this why cant I just be normal.....when you dont have an answer it is tough.

We picked Caine up at lunch and took him to his appointment at the clinic.  They thought he looked pale and took his blood work.  We also mentioned the headaches.  The doctor thought his hemoglobin was low and we did blood work and it was.  That means he had to do his first blood transfusion.  Since we couldn't stay at the clinic we had to go to 4F at the General to.get it done.  It takes 4 hours.

They will be watching his levels.closely this week as he may need another before the week is over.

Also with the drugs he is on, Cybaritine, it seems to be the culprit to his queasiness.  He got the drug earlier today and didnt tell.us his stomach wasnt good and ended up getting sick during his transfusion.  Gave him his vomit cover medicine as we like to call it (Ondansatron) and it seemed to settle down and he could eat.

That is it.....one day at a time..sometimes one hour at a time.

Long hospital day today...

So we are in week 2 of consolidation and he is doing well (although totally hates needles and bandaids still so not a great event)Today with one of the chemos he needed ALOT of hydration.  Before his treatment they put in 1L and afer his treatment we have to stay around 3 hours for another 1L of IV hydration....we got here at 830 and may be out around 330.  Had a nice picnic lunch today instead of eating out so enjoyed that.

Just as his last IV fluid ended he got sick...we missed our window to get his nausea med in.  Damn it...he is in good spirits still....just need to keep him hydrated for thr rest of the day.

Caine was feeling good this weekend so we decided to head to the Rider Game...good one to watch...he also got to have his ever loved Poutine.

We have treatments up til Thursday( not as long as today).....have a great week and we will post on how he is making it through....

Phase 2 Consolidation starts...

We have had some downtime so we got out over the weekend and did some boating and camping at Alice Beach with our friends the Geigers.  It was a fun time and Caine really enjoyed being away and outdoors.  It was nice to see him just be a normal kid with his friends.

On Monday we started Phase of treatment called Consolidation.  We are starting strong with good blood levels and great health.  This section of treatment has a few more leukemia specific drugs so may be a bit tougher on him.  He will probably lose his hair this round but with fall around the corner he is ok as he can wear his toques.

Lastly, I found a great organization called Childhood Cancer Canada.  They have different programs and packages for kids with cancer.  Caine received his Empowerment pack yesterday and received alot of great stuff including a new Lenovo tablet.  He was over the moon.  It is a great organization so look at donating.

Now they tell me I am wrong

Caine had to go.in for his 5th out of 6th Erwinia shot today.  They ran a MRD test (minimal residue disease) to.more.deeply analysis his bone marrow than the microscope here.  This test found that he still has 3.3% left in his bone marrow so not quite in remission.  The bad side of this is we feel totally blind sided as last week they gave us the all clear from.the first test.  But looking at it from a different angle he only has 3% left out of the original 64% (which was probably higher as they never did the deeper dive MRD test).  I did some research and most kids with tcell ALL will usually not go into complete remission with the induction phasebut get really close.  Going into the second phase of consolidation should get rid of the remaining 3% as there are more treatments that are leukemia specific.  We are trying to stay positive about all of this and keep taking it one day at a time. 

We start consolidation phase on Monday, August 19 and it has two parts totalling 72 days....fingers crossed by Halloween we get good news that it is completely gone.

We are in remission!!! Treatment continues to keep it that way

Today was a good day.  Caine is having his last day on steriods (yeah as not sure our food bill.could keep.going).  We were advised that the mass in his chest is 100% gone.  That meant that we could finally get rid of his PICC line and get a Port ( which is a device under his skin on his chest so he can shower and even go swimming if he likes).  The BEST thing to happen today is they did a bone marrow biopsy and they said he is in remission.   What that means is from the samples they took there are no cancer cells left.  Treatment will continue to ensure they dont grow back and get the ones which may "be hiding".  We are over the moon.

Today we completed our first round of chemo with no hair loss, no sickness, no hospital stays and being told we are in remission.   We will continue getting the remaining three shots he has left over the next week and phase 2 of chemo will start the week of August 19.  We are hoping his blood counts stay good so we can get on the boat a few times before the end of summer.

Thanks for your continued support and prayers as we continue down our path.

Almost done first round

Sorry for the delayed update.  We went in on Thursday for his IV chemo treatments and they surprised us with his first Erwinia shots.  He was not happy but we were as they are pretty critical to his treatment. We had to sit for 2 hours after so Burger King it was.  His blood levels are still good so we are happy.  We need.to head to 4F in General on Monday for his next shots.

SPECIAL THANKS to the Allan's for the amazing supper.  You are amazing neighbors!!!

He was feeling pretty good after treatment so his friends.come over for a bit to watch the Rider game.  He was very happy to have them around.

We had a chill weekend and left the house to go to Boston Pizza for Wade's birthday.   Caine was happy to get out but made me.wipe down everything when we got there.  On Saturday he even wanted to play pool so we took him to the broken rack to play.. he didn't last long to hard to bend over with all the puffiness from the steriods.

I will.update after our appointment is over today.

Update:  his shots on Monday went fine.  He had a chest xray as well.