Blood work follow up still good

We went in Monday morning to get Caine's bloodwork done.   His levels are still good which means his immune system is still fairly strong.  They are expecting it to drop but for now it is all good!!!

We headed to the clinic tomorrow for his last IV chemo treatment for this block.  Will update later tomorrow.

Seem to always be waiting for the next thing to drop...

Caine's treatment on Thursday went well.  Dr. Hok was our doctor today and he stated that with treatment 3 this is when we can expect to see Caines counts start to drop.  We have to watch close for signs of infection such as fever and tiredness and Caine just not being right.  We have to go in Monday for a CBC to see how he is doing with Chemo on Thursday.

Good news is that they found the replacement drug, Erwinia.  They are anticipating it to arrive Wednesday so we will most likely start those shots on Friday.

Watching for changes in Caine may be tough.  The steriods are taking their toll on Caine.  He is starting to puff out and have drastic mood swings.  He was having a great day with friends over and at  night was VERY upset about everything happening to him.  It breaks my heart....new told him this is happening to everyone and even though you are the one going through th4 crappy parts we are all here for anything (even Brody was wanting to be in on the conversations and showed he cared).  It will definitely be a long 12 lore days with steriods....cant wait til they are done....

Still doing great at home.....

Sorry for the lack of updates but we have been doing great at home.  Caine is super stoked to have his xbox and TV in his room (hard to get him out now), but we do get outside once a day.  Yesterday he even went and hung out with his buddies at a Lemonade stand.

I have become very obsessive with cleaning and everyone sanitizing so be prepared if you come over to sanitize and have it maybe smell like a pool :).

We have also been eating the best we have eaten in a while,  ham and potatoes, chicken, ribs, quesadillas and nachos.    So that being said we are all feed well while is on steriods.

His backup drug, Erwinia, still has not come in due to world wide constraints.  We are going help them as much as we can by making some.calls to help them get some as it is important to Caines care.

His next treatment is Thursday so I will update after that

WE GOT TO GO HOME!!!!

After 14 days of being in hospitals between Regina and Saskatoon we got to come home yesterday.  Caine did his treatment in Saskatoon and we were on the road about 3pm.  Our next appointment will.be in Regina on July 25 (unless his back up med to Peg comes in then maybe a but earlier next week).  Caine was so happy to be out but also very tired after his treatment.

Thank you everyone for your encouragement and continued support.  I am sure we will need more as we work through our journey over the next few years.  BUT so happy to be home and able to spread out and start our new life.

Another boring day...but some good news

Nothing big was going on today other than a few routine tests and xray.  The xray has come back to show that his mass has now been reduced by about 95%.  This is great news...makes all the slow crappy days of sitting here doing nothing seem worth it.  Caine has been energetic again today ( three walks no wheelchair and included stairs)and said it has been a few months since he felt this good.  It is so nice to see him smile.

Tomorrow we do another round of chemo and if all.goes well we should be on our way home to start our new norm.

Stay tuned for an update tomorrow and if we are Regina bound.

Also special shout out to the great family we meet at Ronald McDonald House, Jesse and Chantal, as they were able to go home with their little girl who was in the NICU for 16 days.  So happy to have meet you and happy you get to go home and start your new norm as well.

Today was a good day

Today was a good day.  Caine was energetic (was walking around and even pushing Brody in the wheelchair) and happy.  The doctor came in and stated that we would start with the new drug next week.  He also stated that even with his reaction to the last drug we are still on track to head home onThursday after our treatments (which will be the same as the day one treatments so no issue with reactions).   That really made Caine happy as he is really bored and misses his friends and decent food alot.

Special thanks to Jenny for coming to see Caine.  It may not have looked like it made a difference but it did he said it made him feel better.

Tomorrow brings xrays and a few other tests to get ready to go home on Thursday.

Bad day for round 2

We started our second treatment today with a medication they call Peg.  This is the most risky one for kids to have an allergic reaction to.  Caine got about half way through and he reacted.  His ears were hot and itchy and he started to cough.  The treatment stopped and they gave him benelyn.  It helped but gave him a nasty headache.  So they also gave morphine.  He is now sleeping and stable.  This now means new game plan and different medicine (which after what happened today I am 100% ok with).

I have been reading take it a day at a time and now i understand why as things can change that quickly.

We did have alot of.visitors this weekend which helped lift his spirits alot.  First there was Lucas and Andrea.  With them here we got to see silly Caine again.

Next was Uncle Kenny and Auntie Chantal.  Ken was the first person to make him laugh in days and they made a game plan for hockey season so Caine is over the moon happy.

Next was a visit from.his bestie Kellyn and Scarlett and Sophie. The two of them acted like they hadn't missed a step.  I am so happy Caine has a friend like Kellyn that we know will be there no matter what.

Last but not least Auntie Paula stopped in.  She made him his special doll with a PICC line, removable hair and face mask.  Caine and Kellyn thought it was awesome and honestly I do too.  Paula always knows what will make people feel better.

Here is hoping Tuesday is uneventful.

UPDATE:  Caine is up and alert.  He woke up and said and I quote "holy shit that hurt..like someone shot me in the head"....he is positive and ready to go now...this is making me feel better now.

Finally some down days

Caine has nothing happening again until Monday.  So we will.hang out, play xbox watch movies, take some walks, head outside.  Caine will be some visitors over the weekend so that will help cheer him up.

I think we could all use some good news...Caine got an xray this morning and his mass in his chest has shrunk about 75% already and after day one of chemo his blood levels are still above normal.  FINALLY something good...I know we just started but starting off strong.

Will update at the end of the weekend.  Have a great one.

Day 7...Diagnoses is in and treatments have started

I didnt have it in me to update yesterday.  They have solidified his diagnoses as T cell acute lymphoblastic leukemia. There was cancer cells in his bone marrow (it stated 65%).  Every lymphoma will have cancer in bone marrow but once it goes over 25% it changes to leukemia vs lymphoma. So that being said we now have a 3 year journey vs 2 but there is only one additional drug he requires with the change.  In researching kids with ALL there is a 98% success rate of complete cure with first treatment and 90% success rate of  never returning.  I will take those odds.

Two of my best friends, Paula and Debbie, were here yesterday for all.of this.  I love them both so much and thankful they were here to help me through yesterday.  Wish they could stay the whole time.

Grandpa Art also showed up today and was able to help us through this.  Caine and Brody were very happy to see him.

Highlight we did get to meet another Rider Christensen Jones (or CJ as he calls himself).  He was pretty funny.  Hope to see him out on the field next game.

Yesterday he also had a PET scan.  He was very brave and took 45 mins and he didnt move so did awesome.

We started treatment today and if he does well we can head home in a week or two to.continue at home in Regina.  This will be.my view for a few months...

Even though this isnt the story we wanted we will continue on......please keep praying and visiting (but please call.or text first)

Day 5..let's the steroids and mood swings begin

It has been a pretty uneventful day.  He started steroids to begin shrinking his mass.  They did warn us that he would have mood swings and an increase in appetite and he has both....but I have to admit it it nice to see him eat again.  We did go for an Echo of his heart as the mass did move it a bit.  His echo looks awesome.  Still and always will love our cardio team and now get to see them twice as much as they will also follow Caine on his journey.

We have a PET scan scheduled for tomorrow at 11am.  They like to do this before treatment and after to closely compare pictures to watch full progression.

I had a good day as I got to visit my good friend Crystal.  There is nothing better than being able to talk someone on the outside.  Thanks Crystal our chat today really helped.

For tonight we are back to  normal..Caine complaining about hospital wifi while playing Fortnite with his buddies, the constant untangling of cords, and constant asks for food.  I guess this will be the new norm for a while and I am glad to have it. 

Til tomorrow.....

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.