We are making the most out of 2020!!!!

 It has been a crazy crazy summer.  COVID put such a spin on things but everything keeps moving.

We are currently in our 3rd Phase of Maintenance with Caine.  Our end of treatment is November 13. 2022.  It will be a long few years but Caine is doing really awesome.  We visit the clinic once a month for a check up and Vincristine. The only thing that sucks is he may have to be on monthly steriod pulses starting in November 2020 until end of treatment.  Those are really tough on him as he just hurts but the medication overall doesn't effect him at all.  He is back in school full time, playing flag football and will be playing hockey. There is no stopping him.

Our summer was filled with camping and boating.  Both the kids are really enjoying golf this year and fishing.  We made the best of a limited summer and went camping a few times with some great friends, Andrea Sullivan and Trevor Uhrich, Tamara Kardash and Bob and Lynn Kardash. We had the camping Olympics, HUGE water fight against the boys, tie dye shirts and fishing.  The boys even did a restaurant one night where they served the parents food and drinks from their restaurant.  We camped, boated and fished a few times at the Geiger cabin as well out at Alice Beach.  Over all a great summer.

Also over the summer we got a few pictures done again for the Jim Pattison Children's Hospital by April Grace Photography.  As you can well imagine we are big supporters of the hospital and will continue to be.  Their first poster was also up in Costco for the month of September not sure if you saw it or not.....

School does look different for these two this year.  They were both very excited to be back at it and I hope everyone takes the precautions to ensure they can stay in school all year.  Caine is in Grade 7 this year and Brody is in Grade 4.

Thanks for continuing to follow us through this journey.  Even though the hard part is over, our journey continues for a lifetime.  Both boys continue to remain strong and we are confident that they will be strive now and into the future.

MAY "COVID" UPDATE

Things have been going very well.  Caine has his energy back and is making the most of the crappy situation we currently have.  He has been out bike riding and hanging with his social house friends playing ball, basketball and of course video games.

April is a busy month....

April 1 was his birthday..so completely different.  No big party no special cake just the four us with Olive Garden and he had a mcflurry for a cake.  Our good friends Andrea, Trevor, Lucas and Logan gave Caine a drive by Birthday wish.

On April 7 was Brodys 9th birthday.  Again not the same.  He wanted Boston Pizza and we gave him a donut cake...he loved it.

My birthday was on the 9th.   We did Vietemese as some of my favorites were not open yet for take out.

Easter also happened in April.  Apparently the Easter Bunny is an essential service so arrived at the Webers as planned.

With Saskatchewan finally opening up we are starting to plan our summer.  Boating (Wade and the boys have been out already while I had to work), booking our camping sites, and just figuring out how to enjoy our summer this year.  The boys both love our new fire pit so we have a fire alot.

Tomorrow is check up day for Caine at the clinic.  I will update if anything changes.

For now we arw grateful to be through the hard part and happy to start living a bit again.

Maintence #1 finally started.....

You would think with being house bound due to COVID-19 that I would have updated before now.

On Wednesday, March 25 we started Maintenance #1.  He has 10 to go through with each of them being a 84 day block.  So we still have a few years of chemo but it is mostly at home pills once a day with some steroids added in every so often...so not crazy.  We have to head to the clinic every 28 days.

Which brings me to this whole crazy COVID-19 thing going on.  Just when we were ready to get back normal...Caine going back to.school and not having to.be as aware of our surroundings this happens.  So nothing new for us here as we have been living this way since July.  But still staying isolated from everything and everyone is hard as we could still have visitors  if they were healthy.  So both boys are enjoying no.school (still do a tad at home), xbox and playing outside in the driveway or bike riding.  If it is cold we still try to.get activity in somehow......

Stay healthy and smart everyone.  Hopefully summer brings us some fun!!

DI IS DONE!!!! FRONTLINE IS DONE!!!

As of March 6, 2020 Caine finished Delayed Intensification which is the end of his Frontline treatment.  Most happy to be done with the Erwina shots.  He had 72 total over the course of Frontline.  We are now just waiting for his counts to jump back up so we can start Maintenance.  Maintenance is a lighter mostly at home chemo that will go for around 2 years.  We has to go celebrate and went to Caines favorite restaurant Olive Garden so he could have his stuffed mushrooms and fettuccine and mushrooms with Alfredo. 

With his immune system and COVID-19 we are being extra cautious.  May continue to keep him home from school and will define be staying away from crowds.  Why does this stupid virus have to be out now when we are so close to getting back to a new norm. 

We will continue to celebrate being done frontline and moving forward regardless   nothing will take this away from us.

Almost done DI!!!!

So we are done with the harder drugs of this piece of treatment (the Cyterabine which usually made him feel icky but seemed to be ok this time thank God).  Although this medication does make his counts and blood work drop substantially (which over the weekend is what made him feel crumby).  He required a blood transfusion on Tuesday, Feb 25 and he is getting platelets today on Wednesday, Feb 26.  His counts are also way down to almost 0 (0.1) so if you even have a sniffle please stay away until you are 100% or until his counts come back up which hopefully will be by end of next week. 

As part of the last two weeks of DI, he will receive his last 6 shots of Erwina (he will have 72 total since the start of these).  He did one on Monday and will do one today so he will be complete with these by March 6...that is also the end date of DI....which is the END OF FRONTLINE!!!!!!  I can't believe it.  I will update after March 6 with our celebration party of being done....

2nd half of Delayed Intensification starts!!!

Caine sailed through the first half of DI without much complication at all.  He got tired from the doxorubicin (or the red devil) as it is referred to, but otherwise he did great.  During the 1rst half of DI he had two steroid stints which were hard as after day 5 both times he had major leg and hip pain.  This is a side effect of the steroids.  It took a few days after he was completed his 7 day cycle to go away.  He was pretty brave and tough during that whole ordeal.

We started the 2nd half of DI on Monday.  We will have a busy month with being at the clinic for most of February.  However the hard stuff will be done on February 21 and then his last Erwina shots ever will be completed on March 3!!!

MARCH 3, 2020 is the conclusion of FRONTLINE treatment.  It has been a long 8 months with one to go but we can see the light and are so happy to have made it through as successfully as we have.  Dr. Haq has even commented to Caine that has been a Pediatric Oncologist for 25 years and he has never seen anyone go through the treatment like him.  Caine is a tough little man and I am so proud to say I am his Mom....

Keep praying and thinking of us through February and stay tuned for big party information to follow :)

Final stage of Frontline begins...Delayed Intensification (DI)

Happy New Year everyone!!  We had a very quiet and uneventful New Year.  We celebrated by attending the Regina Pat's New Years Day game...they even won in overtime.

Caine went for an echo on his heart on Jan 2 as they like to check his heart before this treatment as the one drug can be hard on the heart, doxorubicon.

We did bloodwork on Jan7 and got the all clear to start our final stage of frontline, Delayed Intensification (DI) on January 8.  He did well.with the first round and has two more rounds.  If all goes to plan we should be complete with all of our frontline around Feb 29 (yeah for leap year).  We head back to the clinic tomorrow for another round of IV treatment and his shots (only 9 of those left too...not that we are counting).

The tough part about the past week is that he had a week blast of steriods.  This round really effected his mood vs needing to eat everything in sute.  The blast is done today and starts again in a week so one more to get through.  These weeks are tough on all of us.

We are seeing the light at the end of this crappy tunnel.  Please continue to pray and think of Caine as he goes through this.

After this we are onto maintenance which is supposed to be easy and manageable.  They also say within a few months he will be back to " we cant wait".

Interm Maintenance DONE!!! VERY Merry Christmas

Sorry for not updating.  When things are going so well hard to remember to update.

On December 23 Caine had his last treatment in Interm Maintenance.  His leaves remain high and he has been happy and healthy.  His personality is fully back and his hair is all back ( he is even considering a trim).

Early in the new year we will start the last phase of frontline, Delayed Intensified (DI).  It will be a bit tougher but we are all looking at the bright side once we get through this we will move to maintenance and get back to some normalcy with at-home treatment and a once a month visit to the clinic.

MERRY CHRISTMAS!!!!
As I said to a friend today having Caine so healthy was the best gift of all for our family.  Santa was very good to both kids this year.. new desk with a gaming keyboard and mouse.  Both are painting their rooms (pics to follow once complete).  Our families are coming over the next few days to celebrate.  Life couldn't be better.

MERRY CHRISTMAS from the Webers!!

More than 1/2 way through Interm Maintenance and doing GREAT!!

I realize I don't post if things are going well...so guess what things are going well.  Caine is doing really good with this phase of treatment.  He has been attending school when he can and is getting through his treatments without any affects.  We will take it as the next phase (Delayed Intensification) is supposed to be a hard one, although also the last hard one :)

Caine did decide to not play hockey this year.  He stated his body just aches when he skates and he just can't do it.  We are ok with that as him doing what he is doing by going to school and going out and playing with his friends is just as good as we have heard others are not doing as well as he is and constantly in and out of the hospital.

Caine has one more rounds of shots (on Friday) and one more chemo treatment on December 23 then we are done til the New Year!!!  Keep the prayers coming as they are working and we are getting closer to getting into maintenance and a more normal cycle.

We are also getting out and having some fun.  Caine took a picture of "Brody" and showed us this....his personality is back for sure!!!

Moving along...

So far so good with this phase of treatment.  He is going to school when he can and in great spirits.  He still has these odd adhoc puking sessions that no one can figure out but he doesnt spike a fever and feels well after so they arent worried yet.

Today he has the privilege of being the 7th man at the Pat's Canadien game today as part of Hockey Regina Hockey fights Cancer.  Him and his friend Kellyn got go on ice to watch warm ups, participated on the pregame pep talk, lead them out when they came on the ice and do the ceremonial puke drop.  So proud of them both.

Interm Maintenance begins tomorrow!!

Last week Caines counts were not where they needed to be to start his next phase of Chemo, so we had a week off.

Went today to check again and his counts are up to 1500 vs 300 (needed to be at 750 to start).  So tomorrow we start our next phase Interm Maintenance.  IM, we are told, is quite mild so we should have a good holiday season.

It has bee nice to see Caine start to come back to his normal self.  His appetite is back and he is wanting to do more.  His hair is starting to fill back in so he is getting more confident(even ok with the odd pic)

Think and pray for us as we go through Phase 3 of 4 of the frontline Chemo treatments.

2nd Phase of Consolidation COMPLETE!!!

Man I am.getting bad for updating the blog. 

Caine has completed Phase 2 of Consolidation.  He made it through with some nausea and vomiting but overall we are happy.  He never become neutrophenic this time...came close at 100 but never did zero out.  We are really happy.

Caine did participate in Halloween this year at both the clinic and with his friends.  I think he enjoyed being a "normal" kid for the day.  He said he got tired but it was worth it.

Caine also took part in his first hockey game on Saturday.  He didn't make it through the whole game but did pretty good overall.

We head back to the clinic tomorrow to see where is levels are at to see if he starts his next round of chemo called Interm Maintenance.  It is supposed to be a lighter round with most kids doing school and sports throughout.  We are looking forward to having something light and a great holiday season.

Slowly but surely we are making our way through this journey.  It has been hard on Caine as he just doesnt get why it happened to him and we have no answers.  He keeps saying he just wants to be normal.  It breaks my heart.

Doing much better!!!

Caine is doing much better this week as far as nausea is concerned.  His appetite is starting to come back so that helps as well.

Caine even went to his first hockey practice on Sunday.  He only made it 30 minutes but did well.  He said he will continue to try.  My brother Ken is coaching so helps alot

Caine is done the hard drugs but now his counts are starting to take a hit.  On Monday is hemoglobin, platelets and neutrophils were all down.  So the plan was to get a platelet transfusion on Tuesday (which we did and it really perked him.up) and on Friday he will have another blood transfusion for his hemoglobin.  His neutrophils are coming down slowly so he is still high enough to do things but just on the edge of "house arrest".  So once we get to Friday we will know what the weekend holds.

Also as a family we had my Grandma pass away at the young age of 97.  We will miss her dearly but know she isnt in pain anymore and reunited with Grandpa, my Dad, my Uncle Rick and her family.  Love you always.

Not off to a good start of the week

Caine has started his second week of Cytarabine and it is already bad.  He had a good weekend of not getting sick.  On Monday at 11pm that changed...he ended up getting sick three times and again in the morning when we arrived at the clinic.

Caine did his treatments while we waited for the bloodwork to come back..but we all anticipated that he would require a blood transfusion as he was pale and his hands were white.  Last time he had to get a transfusion he was sick to his stomach too....and here we sit getting a transfusion as his hemoglobin is low. 

Good news he is starting to feel better and no stomach pain.  So as long as the day gets with a transfusion glad to have one to make him feel better.

Please think of Caine as we make it through the next 3 days as it will be trying to Caine.

So happy this week is over....

Caine had a rough week this week.
He could not bounce back after Monday and threw up all week, sometimes up to 3 times a day.  Smells would make him nauseous to the point of puking.  Needless to say he did not attend school this week.  His bloodwork was awesome with his neutrophil counts (part of the white blood cells that is your immunity) being at 2600.  We will take it.

Caine had a day off today from treatment is is starting to feel better and have a bit to eat with no puking.  Having a 4 day break will be good for him.

Caine is getting frustrated as being sick is not a good thing.  Lots of questions around why him and why there isnt meds that they can give people that dont make him.sick.  I dont have answers for any of it and it kills me.

We are working hard in taking it a day at a time and looking forward to getting through this block of treatment at the end of the month.

2nd week is gonna be tough

Caine had a lazy weekend which was great.  He felt great and his levels were great so that is all.that matters.

We started the 2nd week of consolidation and it has been not so good.  The drugs he is on Cyclomosphomade (just for one day) and Cyberatine (4 days a week for 2 weeks) are the two drugs that make him not feel too well.  Yesterday we were there all day and they gave him three separate antinausiant medications and he still ended up being sick at the end.  These drugs also kill his appetite and cause him to feel "off" not sure how else to explain it.  I can't wait to get through the next few weeks so we can get back on track a bit again.

This is Caine out cold from all the antinausea meds...

On a great note I went to the fundraiser my fabulous friends, Anna and Brad, hosted for Caine.  It was so very awesome and raised about $3500 which will help our family alot in the coming months.  Words cannot explain my gratitude for my wonderful Sasktoon friends I have...love you all so much.

Here is hoping this week will be low key and Caine can get through it like he has in the past.

Week 1 of 2nd phase of consolidation

Where has this week gone.  On Monday we went into hospital for bloodwork to see where is levels were.  I would have beat that he would have increased slightly from 400 that he was on Friday.  I was wrong...he was at 1100 which is awesome, but also meant we started our next phase of chemo which is the same chemo as last round and it was tough on him...so here is hoping we make it through this phase with the same amount of pukes and no infection.

Caine is starting to loose his hair.  It is fairly thin but he refuses to shave it just wears his toque. I am on with it but he isnt happy about it.  Caine is angry about this the most..I think he would take puking over loosing his hair anyday.  We have to remind him it will grow back thicker and nicer...right now he doesnt care he just wants his hair.

Caine is also going to school half days this week while his counts are high enough.  He is enjoying being back but not liking recess too much right now as he has to keep his needle in his port for the week and doesnt like running with it so recess is pretty lame for him.  He has great friends though so he is never alone.  He also wrote his first math test today and the teacher said he did very well so so proud of him.

Bloodwork wont be done again til the end of the week and with the current chemo he is on Nelarabine, it doesnt usually effect counts.  Hoping his immune system is even higher so he can have a great weekend.

Great news!!!!

We went into clinic today to get Caines bloodwork done to see where his levels sit before the weekend.  Good news his counts have come up to the point he can go out and be around people (not massive crowds) If you are sick please still stay home until you are better but if you are well and wash hands you can come around.

Also to our surprise the MRD test results were back already.  CAINE IS NEGATIVE!!!  We couldn't be more happy..
Even Caine is telling everyone as he is pretty stoked that all the crap he is going through is working.

We also trial ran Caines live feed from school and he enjoyed being a part of it.  He looks forward to being on line when he cant be at school.

We will find out on Monday if his next round of consolidation starts.  This will all depend how.much more.his levels come up over the weekend.  He is currently at 400 and needs to be at 750 to continue.  If he isnt at that they will hold his start date for an extra week.

Have a great weekend!!!

Getting closer...

We went in Tuesday this week for follow up blood work.  His immunity is still low (not as low) so we are hoping by tomorrow (Friday)  it is high enough he can at least hang out with a friend or two.

His counts were good enough to get his bone marrow biopsy on Wednesday.  He had quite a sore back after but today it seems ok.  They have sent his biopsy off to get the MRD test...should have results early next week.  Please pray for negative MRD ad that will make this all worth it.

We did go out on Sunday (as Brody went to the farm with Grandpa) and Monday to do a bit of 9 hole golfing.  It was good to get Caine out to.enjoy this nice weather before the snow flys :p

Lastly at school they are putting JJ in his chair while he is away.  JJ is a large stuffed monkey from a great organization called Monkey In My Chair.  His class has been having a blast with him and taking him with them wherever they go.  I cant share pics yet as I dont want to put any of his classmates on line :).

Numbers are starting to come back sslloowwllyy...

Sorry for the lack of updates.  We have been hanging at home trying to keep Caine away from anything which may make him sick.  As of today his numbers are still extremely low so will be at home.  He is getting frustrated as he misses hanging out with his friends but no immune system means no visitors until it is back up.

Caine is also doing school work at home daily.  His teacher and school has been accommodating and by hopefully by the  end of the month he will have a private YouTube channel set up where he can participate in classes live or watch replays if he cant watch live.  This will get him reinvigorated with school as me teaching him is only so much fun...although have to say I am getting pretty good at it.

Next week is a no treatment week.  We have formally finished Phase 1 of 2 of consolidation.....so happy about that.  We will however go in Tuesday for blood work and if his numbers come up enough we will have a bone marrow biopsy on Wednesday to see if the MRD comes back negative now.  Please pray that it does.....if his counts arent where they want them we will be delayed a week to get the bone marrow biopsy and then an additional week to start Phase 2.

We are rocking the treatment and pray that he continues to do well through the remainder.

Have a great weekend.