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!!!