Biopsy Day....

Our doctor..Dr. Alvi...made it happen today.  Caine went in for his biopsy at 3pm today.  He was scared and brave at the same time ( more than I can say for myself).  We were allowed to be with him while they put hin out.  He was funny he was saying things like "Mom you look funny as there are two of you", " It looks like a carnival.in here  no wait a car show"...He was out around 445 and was up right away in recovery (but took a 2 hour nap shortly after)  Caine did awesome during the procedures and is most happy no more IVs as they put in a PICC line.  They will be starting him on steriods today to start the shrinking process and will start treatment when they 100% finalize his type cancer (Dr. Alvi  is thinking before weeks end).  Keep out little man iny

Some of you are asking about Brody.  He is here along with my Mom.  We are staying at our new home away from home Ronald McDonald House and tonight Brody found a hamburger to model with...he has been comic relief that is for sure...

Some news...not good but news

Today the doctor came in and let us know that from some others tests he has done he is 90% sure Caine has T Lymphoblastic Lymphoma.  They will start on steriods on Tuesday after biopsy to start shrinking it followed by treatment plan when they are 100% sure (by Friday at latest).  This is common in boys 10 to 14...he doesnt know why kids get it but have treated everyone successfully with it....it will be a 2 year journey with this..so let the journey begin. 

Caine remains positive and wants to get things going so he can get home to his bed and friends. 

We did bring some luxuries from home to entertain him a bit...ie his xbox 😋

Please keep us in your thoughts and prayers as we go down our new path.

New journey begins but now with Caine

July 4, 2019 our lives changed again.  Caine was sick and we took him into get checked.  It was found that he had massive fluid on his lungs, over 1L to be exact and a very large mass growing in his chest cavity.  They were unable to do biopsy tests ( to underatand if we are dealing with something begnin or cancerous)in Regina so we were airlifted to Saskatoon at 10pm on July 5, 2019.

On the bright side in Regina Roosevelt and Thigpen from the Riders showed up and we got to visit and get some swag...great guys.

Since arriving here we have had more testing to ensure when the biopsy is complete all doctors have their input in to only have to do it once.  They are anticipating it to happen on Tuesday but for now we wait.

Let the new journey begin...the Webers are strong and will overcome this too.

Will Winter Ever End???? But We are going GREAT!!!

I tried making a resolution to update once a month starting in July...that hasn't gone very well...so here it goes.

JULY 2016
The Weber's took their first Summer vacation (we did two this year).  We went to Winnipeg to visit our friends the Housers.  It was great to get the kids together and the adults to catch up (we miss them dearly and still think they should move back to Regina).  We went to a amusement park called TinkerTown and just hung out otherwise with our friends.  Brody absolutely loved the Scrambler ride and the roller coasters (pretty sure we will be rider buddies).

AUGUST 2016

Vacation #2.  We went to Edmonton.  To break up the trip we overnighted in Saskatoon on the way there and back.  WE stayed at the Sheraton (which has an awesome waterpark).  Brody figured out that he liked Waterslides and went up and down about 50 times (which I was impressed with as his stamina on the stairs is impressive).  We stayed in the West Edmonton Mall Hotel as well.  The kids thought it was awesome.  We didn't even have to leave the mall.  WE did the waterpark (again Brody found a slide he loved and just continued to go up and down), Galaxyland (loved the roller coasters) and we even ventured out and went to the zoo.  It was a great relaxing week.

We also went on a train ride in Ogema, Saskatchewan with Grandpa Weber.  It was a lot of fun with  pop in a bottle even, which the kids thought was awesome.

SEPTEMBER 2016

First day of kindergarten, I can't believe it.  I always wondered if we would get this far and here we are starting kindergarten with no restrictions other than talking to the teachers and letting him tell them his limits.  It is not secret that he idolizes his big brother.......

OCTOBER 2016

We had a very busy October.  Brody received the Guardian of the Month award at School for the virtue of Respect.  We were VERY proud of him.  Sports also started this month however....we enrolled Brody in ice hockey and he was mad getting ready and then gave us the stink eye on the ice the whole time.  When he got off the ice and undressed he came up to me and yelled "I HATE ICE HOCKEY I THOUGHT YOU WERE PUTTING ME IN BALL HOCKEY".  Point taken as we could still remove him without having to pay so it all worked out.  Also it was Halloween (which this year he absolutely LOVED).  Nothing but Chocolate for Brody :)

DECEMBER 2016

Brody had his first ever Christmas concert and it was great.  It was nice to watch a Christmas concert with no kids bugging me (I will admit I really enjoyed it).  We did a lot of tobogganing as it was a beautiful December so spend as much of it outside as possible.  Then there was Christmas...well Brody had to write a letter to Santa, then another, and then make sure there was cookies and milk and then up at 5am on Christmas morning to make sure he arrived.  He was appreciative of all his gifts from new socks to the new Wii he got.  I hope that continues.  We also celebrated New Years Eve with some friends and Brody made it to 1130 (which is impressive as he usually doesn't make it past 8pm)

FEBRUARY 2017

HAPPY NEW YEAR!!!!  We had a busy New Year with all of Caine's hockey and Brody starting Basketball (which he is really great at).  In February we needed a vacation and went to Phoenix, Arizona.  WE stayed it the same place as last time in Maricopa.  WE attended one hockey game and the rest of the time we just hung around the pool, went to the arcade (which Brody loved the motorcycle game) and Laser Tag (as they call it there).  He says the favorite part of the trip is the restaurant Mom took them to.  We all went to the RainForest Café and it was awesome. 

We also had our 9 month check up with Dr. Bradley.  His check up went well.  Everything still looked great  and he is still in junctional rhythm when at rest.  They will continue to monitor him but we do not have a follow up for 1 year!!! I never thought I would hear that....I am so happy with this outcome and so proud of Brody for being so strong and continuing his battle with CHD with fierce.  He likes to tell people about his special super charged heart all the time.  I am proud that he is proud of his "war wounds"

Where has the time gone...

Well where has the time gone... I have updates and some VERY good ones

APRIL 2016
Brody turned 5 years old.  Since him and his brother have birthdays 6 days apart we do a consolidated family party and then they each get their own friends birthday party.  This year Brody decided to have his birthday bash at Dinobouncers.  He had a fantastic time.

MAY 2016
Finally got to go for his checkup.  The doctor was VERY happy that we took him to Dinobouncers when he had his heart monitor on as it showed what happens to his heart when he is active.  As soon as he becomes active his heart goes into regular rhythm...this is AWESOME news as if it wasn't then we would have for sure been headed to Vancouver for a pacemaker.  His heart still goes into Junctional rhythm when he isn't doing anything but they are VERY happy that it kicks in when it should so we are all cleared for a year now.  He grew to 109.8cm and weighs around 43 lbs which is shocking since he only eats pancakes, waffles and kraft dinner...... This trip was also the first time he laid all by himself to get his Echo done.  He is getting so big and brave...

Also Brody had his last day of preschool...he loved school and can't wait to start Kindergarten. 

JUNE 2016
So wondering what a 5 year old with a CHD does...well anything a normal kid does.  He loves Ball Hockey, playing outside, listening to music (his favorites are Sugar and I Don't Care), and just being goofy.  We also got to enjoy a day on Mosaic stadium.  It was a good memory as it is the last season this field is open til the new stadium opens next year.  It was extra special as he got to hang out with two of his favorite people Uncle Kenny and Justin.

BRODY says..... Happy Summer and will continue to update after holidays and the start of the school year.

Happy Easter Everyone!!!

Easter was a blast this year... we started off Good Friday at my Mom's place coloring eggs.  Brody wasn't the most gentle with them but we had some good ones turn out.  With the help of Jocey and Justin of course :)

Then came Easter Sunday.  Brody was so excited about the Easter Bunny.  He loved running around finding clues to get to his basket.  He had a good haul.

We were supposed to have our follow up appointment for his heart monitor but ended up with a massive snow storm the shut the highways so it will be rescheduled for late April early May.  So as Brody does just keep dancing...

Things keep rolling along....

Well there goes my monthly update promise but I am going to try again.....

September 2015
Brody started Preschool this year.  He was so excited to go talked about it since June..until we got there.

It took him a few weeks and he is really enjoying it now and it is REALLY improved his speech.  So happy we enrolled him.

This is the exciting news...Brody was selected to be one of 8 kids to take part in a Saskatchewan Children's Hospital Foundation fund raiser.  Garth Brooks was the main attraction to this event...he was the speaker for the play structure that CHF wants to put in and did it all for free.  All funds raised at the event went that the play structure (it was a $5000 a plate event so needless to say this was the only way we were getting in).  We got to go back stage and meet lots of people.  We meet Mike Babcock who is the coach of the Toronto Maple Leafs.  He asked the boys who their favorite hockey team was and Brody said the Chicago Blackhawks :) and Caine said the Toronto Maple Leafs.  Mike asked Caine if we told him to say that and Caine just looked at him and said No why would they....  we also got to meet Weston Dressler and Brett Smith from the Riders...I think me and Wade enjoyed that more...at least I did :)

Then Brody got to go on stage with 7 others in Regina to Thank Garth Brooks for doing the event for CHF and each child got a personal signed jersey from Garth.  He seemed like a really down to earth great guy and I wish we could have had some one on one time with him.  By the time the event ended it was 10pm and Brody was exhausted and to be honest Garth looked exhausted to.

It was an absolute honor for the Weber family to represent the Saskatchewan Children's Hospital in Regina.  I would volunteer or do anything to help out this great organization.

OCTOBER 2015
6 month check up.... he is doing great.  His stats are still great...96 to 97 for O2 staturation... blood pressure normal and growing steady at 41lbs and 105cm....so happy he is doing well.  I said to Dr. Pocket his cardiologist that when you think he is going left he goes right and you can't guess what he will do next.  His cardiologist wanted to check his blood work for elevated readings as his liver is still slightly enlarged.  She said I was right that all his levels came back normal and she would have bet his liver readings would have been elevated.  He is still in Junctional rhythm so will be doing a heart monitor in the new year to review.

Also had a great Halloween.  Brody was quite into it this year as he just wanted his candy.  He wanted to be Spiderman again so we got him a new outfit.  Caine wanted to be a Zombie...which really but my creative talents to work but I think it turned out pretty good.

NOVEMBER 2015
This was a whole new year for Brody of trying something new.  He really wanted to play ice hockey..we got the check mark from the cardiologist and signed him up.  He had a hard time at first staying upright but enjoys it a lot.  He is on the Wild just like Caine was so VERY happy about that.

DECEMBER 2015
The month with full of Christmas Concerts, Christmas Parties and Christmas itself.  It was a great month with family and friends and the kids had a great Christmas.  Lots of presents and a surprise of a trip in February to Phoenix to see the Coyotes play.  They are so much bigger than last year it is crazy!!!!

JANUARY 2016
In typical New Year's Day fashion (and since it was +2) we got all bundled up and went sledding as a family.  It is so amazing how Brody doesn't get winded like in the past.  I am so thankful for great surgeons that can help kids with heart defects have "normal" lives.

We have also taken in a lot of Regina Pats games...Brody has become such a huge Pat's fan it is crazy... Thanks Tim Horton's for creating a Pat's sprinkle donut that he HAS TO HAVE because it is a Pat's donut.

January was not a good month for us at all.... Brody's best friend, his Grandpa Mike Ritsco, passed away after having a risky heart surgery.  It is so ironic that they were the best of friends and ultimately similar hearts.  We call Brody mini Mike as he is my Dad is a small form...same stubborn personality and as it turned out both had "different" type hearts that needed help.  We miss him dearly everyday and talk about him often.  Forever in our hearts

FEBUARY 2016
Well our trip to Phoenix had arrived.  We stayed at a friends house in Maricopa and it was fabulous...great heated pool and hot tub, close to shopping and about an hour away from hockey and basketball.  We of course took in a Phoenix Coyotes game and they even won and an NBA Phoenix Suns game unfortunately they did not.  We have a blast just taking it day by day with very little stress.  We even went to the Phoenix Children's Museum... it was great for Brody lots of cool things to do however Caine was at that age that he was maybe a year too old but he still tried to enjoy it.  We really needed a trip with some downtime as a family.  It was a great way to reconnect after our crazy January and get the rest and relaxation we needed.

We had a our 24 hour heart monitor put on for Feb 26..which was interesting as he had a birthday party at Dinobouncers.  I am not sure if it is the person who put it on or just crappy tape but the leads kept coming off and I had to band aid them back on.  Thank goodness for the cardiac nurse that was at the party as she assisted me in getting them back on the right spots...I hope it doesn't botch his results too bad but should give them a good sense how what his heart does when he is highly active :)

I will try to keep my promise of updating monthly moving forward.