Getting ready for a new phase

 I haven't posted in a while.  It seems like I get caught up in the daily routine of things and just forget to update everyone on how he is doing. Caleb has been doing really great.  We have been doing our weekly visits and as you can tell Caleb still loves the iPad.  I really don't know how we would have made it this far without it.

The past few weeks for myself has been filled with alot of ups and downs.  Mike and I attended the viewing of a cute little boy that fought hard against his leukemia and was doing well.   But unfortunately had another disorder develop that finally took his life.  As Mike and I stood there waiting to talk to the family I couldn't  help wonder if we could do this if we lost our son.  It was beautiful and sad all at the same time.  After that though, the next couple of days I just felt so angry and frustrated.  I wish we could just go back several months,  When our life was "normal".'  When I wasn't always worrying about blood counts, and keeping him away from people, all his medicines he needs to be taking,  are the treatments really working,  just EVERYTHING!  Some days I feel like I could be swallowed up by the stress and seclude myself to a dark room.  But luckily for me, I have a great support system that won't let me go too far down that dark road.  I was even able to go up the canyon and break a whole lot of dishes.  Just to get all the anger and stress out.  Thanks to my sisters in law it really helped.  I highly recommend it. :)

The picture of Caleb on the right here was so funny!  Two weeks ago or so he had to have yet another lumbar puncture.  These have become quite routine for us.  I still don't like them, but we do what we have to do.  Anyway, Caleb was in the recovery room and trying his best to wake up.  The nurses are great and try to get him drinks or snacks since he had been fasting all morning.  We've found that Caleb usually likes the chips the best so that's what he got on this day.  But I guess he wasn't ready to wake up OR stop eating his chips!  The nurses were cracking up!  They hadn't seen anything like it before.  He

 was sleeping and eating at the same time!  He's
such a cutie!

 

 And Caleb has now discovered that he gets to play the X-Box while he is getting his chemo. It is actually pretty cool.  I was lucky to get him to look at me long enough to even get this picture.  It's all about playing the games now.  Even with the chemo, he is still smiling through it all!

I have been so grateful for Andy.  He has been such a great big brother to Caleb.  I love this picture of Andy reading Caleb some bedtime stories.  Andy lately has been the only one that has been able to get Caleb to take his medicine without a fight.  Whatever it is...the bond that they have.  I love it! 

Tomorrow, April 17th, we start our next round of  chemo.  It's called Delayed Intensification.  The name says it all.  This is where he will be getting some harder medicine and it could make him really sick.  Also more than likely, more hair will fall out and it will be time to just shave it.  I've been dreading this phase since he was diagnosed.  Yet I know we can do this.  Caleb is strong and has been so great through everything; so this is just another hurdle we will have to cross.  *Courage to believe in miracles*  now and always!!

 

My warrior

 This adorable face is the thing that gets me through those days that just seem really difficult.  There are so many times I look at him and wonder how I could be the mother of such a strong little warrior!

 

 Caleb is still doing really well.  I have noticed that the chemo is starting to take it's effect on his little body.  Not just him losing his hair but he his weaker than he used to be just a few short months ago.  Last fall Caleb took a tumbling class that the city was offering.  He went once a week and he loved it!  But really, what three year old wouldn't love jumping and playing around?  There was one specific move that he loved to do and would come home and do it here with his brother and sister.  In simple terms, it was a handstand up against the wall.  He liked to call it 'walking on the wall'.  Well, several days ago Alexis was playing with Caleb and said "hey let's walk on the wall Caleb, you love that!"  So the two of them went to the wall... and up Alexis went, nothing to it.  Caleb on the other hand was a different story.  My heart literally felt like it was breaking as I sat there and watched my boy try with all his might to do it.  A few months ago it was so easy, but not now.   He tried and tried but his strength just wasn't there.  Luckily I was sitting where they couldn't see me because the tears were rolling down my cheeks.  Right as I was ready to tell him to stop trying because I could see

he was getting tired, he got his feet up the wall.  His whole little body was shaking but he did it!  Talk about determination!  I really am in awe of him and his strength.  He wouldn't give up.  Oh, how I love my boy!

 Our clinic trip this week went well.  His ANC was only 500 which meant that his immune system was and is low.  So instead of increasing his chemo which is what they are supposed to do; they just gave him the same dose of Methotrexate as last week.  Since they have to give this chemo over a longer period of time we got to go back to a big room that has big comfy chairs AND video games!  I love the pic of Caleb playing the X-box and he isn't even paying attention to what the nurses are doing.  While we are back there Caleb can play video games or watch movies or whatever he feels like doing.  It's nice they have this available to the kids. Caleb really loved it.


 He still doesn't have much of an appetite.  He will hardly eat anything no matter what we offer.  As a mother, of course it is stressing me out!  But they are watching his weight every time we go in for clinic so that he doesn't lose too much.  For the first time since he was diagnosed he got sick the day after he had chemo.  So when he woke up Tuesday morning he was just plain sick.  We have been so fortunate to this point that the sick stomach hasn't been an issue for him.  I am so thankful for the anti-nausea medicine that helped him to feel better quite quickly.

After we got finished at the clinic we had to pick up brother and sisters.  They had spent the day playing with cousins.  It had been such a long time since Caleb had really been outside and played with his cousins.  So we let him get out and play for a little bit.  It was great to see him doing regular three year old boy things!  It is something that we have just always taken advantage of.   But now we see things so differently.  Everyday is a gift and blessing that we don't take lightly anymore.  It's just sad that we have to have something like this happen to really realize how blessed we really are.   I know I see the world with a different pair of eyes than I did before.  I think in that way I can say that I am grateful for the things that we have learned and ARE learning through this journey.                                                                                            

.This boy, my Caleb, is my hero.  Heaven has a plan for this extraordinary little boy.  I know that he is in the very best hands.  Those of a very loving Heavenly Father.  He has so much to teach us all.  I know that I learn from him everyday, this little boy, with the spirit of a giant.  I hope that one day I can be just as great as he is.  Mommy loves you Caleb! XOXOXO

What a Trooper

This past week has actually gone pretty well.

This handsome face says it all.  He is such a happy and courageous boy.  He started his next round of chemo this last week.  It's called Interm Maintenance and it will last for 8 weeks.  When we got to clinic they started off by giving him the Vincristine.  He has had that many times before and he tolerates it well.  I love that in the picture he isn't even paying attention to the nurse giving it to him.  Hopefully we're headed in the direction of less trauma and stress when we go to

clinic now.  I will say that the iPad has made all the difference in the world for us.  Not only does it keep him busy while we are waiting but, it can keep his attention while they are trying to give him his medicine.  Tricky, tricky... but we will do whatever works! Hahahaha!

The next chemo he received was Methotrexate.  He has had this given in the spine before but this was the first time he has had it by IV.  They put it in this little gadget that administers the medicine over a certain period of time.  It is usually 10 to 15 minutes.  They gave him a good dose of anti nausea medicine with it just in case.  I sat and watched him so carefully, but he did great.  Every time we go back for clinic they will up his dose a little more each time.  Depending on how his body is handling it and how his blood counts come back.

I love how he sits with his Dad and plays his games while all this is going on.  I feel very grateful is able to be there at the appointments with us.  He is a very big comfort to Caleb and this is how they are every time.  I get to sit in the chair across the room. I don't mind it, I like to see the two of them together...Father and Son.  Like I said before, he has done pretty well this week.  He hasn't had any meds to take at home except his standard Monday and Tuesday doses of Septra.  Which is something he will have for years.  But no nightime med drama.  Whew!  I have really liked that and so has Caleb. 

There is one thing that we do have to be watching for.  He hasn't been eating a lot lately and he is starting to lose weight.  We offer him anything he wants but still, won't eat much.  I think we will have to be giving him something that will increase his appetite.  I'm expecting they will give us something for him to take at home during our next visit.  Not fun, but I don't want him losing anymore weight! 

There was actually a moment during this week that as I was sitting here watching Caleb play with his siblings I actually forgot.  Is that possible?!  I turned to Mike and said, "I actually forgot for a moment that he has Leukemia."  I guess it can be a good thing.  He is still our little boy and little/big brother to his siblings.  This time won't last forever and we can make it through this.  He is a fighter and is doing so well.  We love our Caleb and can't wait for the day when he is healthy again!  XOXOXOXO

 

 

 

Our donate button here on the blog is up and running!

Our week off....not really

 So we started off this last week with high hopes of being able to relax a bit and regroup before Caleb starts his next round of chemo.  Well, as things would happen that was the furthest thing from the truth.  On Saturday the 10th, Caleb spiked a fever of almost 103.  So I called Primary's and they said to take him in to UVRMC.  As a Mother who has a child with cancer I've learned to dread "the fever" because it could mean an infection or hospital stay.  But off  we went in the snow and cold to the ER to get him checked out.  Several hours later and after lab tests and antibiotics were given we finally made it home.  We spent all of Sunday resting and keeping a watchful eye on Caleb.  Earlier in the week Andy had caught a bug and been sick.  He gave it to Lexi and they had both been trying to recover.  Even with all my hand washing and sanitizing and mask wearing we still managed to pass this dang bug around.  Caleb spiked a fever again on Monday of about 103.  Since it was during the day I called Primary's and they asked if we had been given a prescription for Tamiflu when we were at UVRMC.

I was shocked actually, because we hadn't been given anything when we were there on Sunday.  The nurse then proceeds to tell me that Caleb had tested positive for Influenza B and he should be given Tamiflu right away.  O.K. Grrrrr!  So instead of going back to Provo I made the trip myself with Caleb up to Primary's to get him looked at and given medicine.  I'm so glad we caught it early enough so that he could get the medicine and not be as sick as his brother and sister were.  I was dreading adding another med to the things that he was already taking.  Although, he has made a step forward in that regard.  He can take the medicine himself now.  He does it when he is ready, which has been nice for all of us.  My sister in law suggested getting a bucket with some little dollar store items in it.  When he takes his medicine at night he gets to pick something out of the bucket.  We still have a little struggle but for the most part this has made our medicine routine SO much better, that and I sing to him while he takes it.  With Caleb now sick and needing another medicine and Sydni needing the Tamiflu as well my white board in my kitchen has gotten quite busy!  It's the only way I can keep track of all the medicines and when they need to be given and when they were given..blah...blah..blah.

So our nighttime medicine is his 6MP or Mercaptopurine.  It is one that they say you shouldn't handle alot.  So this is my setup when I have to get it ready for him at night.  Since he isn't swallowing pills yet (I hope he will soon!)  I have to crush the pill up into a fine powder and then put into something he likes.  The bottle is blue raspberry syrup.  Yes, like snowcone syrup!  It has been a life saver for us.  We buy it at the pharmacy when we are at Primary's.  They have like 8 other flavors so we can change if he wants to try something new.  Why the whisk you ask?  Well, it has a nice flat bottom that can really smash the pills well and I only use it for Calebs meds.   We tried the pill crushers at the store and they just never got things fine enough and Caleb could taste the little pieces.  I know this looks strange, but I'm kinda proud of myself that I found a way to make this work for us.  *Pat on the back* :)




 Once the Tamiflu started kicking in Caleb has been feeling better.  No more fevers of 103, thank goodness!  Watching his favorite shows and playing video games with Andy is what he really likes to do lately.  He is such a sweet little guy.  He is always telling me how much he loves me and then he comes in for a big hug.  I always hold on a little tighter it seems.  Trying to keep him my sweet little Caleb forever.

(-Cut to Caleb walking in the room right now while I'm typing saying that he's being mad and putting himself in timeout!  LOL! Hahahahaha!)

I love him!  He cracks me up!

Tomorrow the home health nurse will come out to access his port and draw blood for his CBC; to see if his numbers are high enough to start his next round of chemo.  The next round will last 8 weeks and we will go in every 10 days instead of every 7.  They call this round Interim Maintenance.  So every 9th day the nurse will come out to take blood to see if he can have chemo the next day.  I hope that makes sense! :) This round of chemo is more dependent on his blood numbers.  If he's too low we won't go in that day or he won't get as much chemo that particular day.  The doctor assures me that this round isn't very diffucult, so he should do well.  I hope she is right.  One good thing is that he will only have oral medicine two days a week!  Hooray!  I'm hoping that during these 8 weeks we can teach him how to swallow pills without all the pressure of -"you have to take this right now!"     

 

We have some awesome things coming up in the next few days for Caleb and our fundraising for him.  We will be out at UVU for two different days coming up.  One is for a Leukemia screening that the lovehopestrength foundation is putting on.  I will be sure to post on Facebook or here on the blog all the updates and I'll be sure to take pictures.  It's exciting to have these opportunities for my boy.  Also to help raise awareness of childhood cancer.  No little one should have to go through this or worry, "I'm going to be fine Mom?"  Yes, my Caleb says that and it breaks my heart everytime.  He should be like he is in this picture and playing ninja turtles-(Thanks Schmidts for that, he loves it)    Before I end this post I just wanted to add that we have added a Donate button on the blog if you feel so inclined to help Caleb with this fight.  Because of the weekend and today is a holiday it isn't up and running yet but will be in a day or two. I'll be sure to post when it is available to use.  I also added two videos that a friend made for us.  To help us stay strong and have courage.  Thank you to all of those that have helped us thus far.  We know that this is long road and we are so thankful that we have so many people with us on this journey to see it out until the end and Caleb is cured and healthy again!  We love you and appreciate you all!  One last thing I wanted to add, I love this....(keep scrolling)

   This last picture is something that hangs in the clinic at Primary's.  It is kind of small so we never really noticed it before.  A couple of weeks ago we had a long wait to be taken back to a room and this cute little thing caught my eye, so I snapped a picture.  This is how childhood should be.  Hug your little ones tight because time goes by way too fast.  Go make some amazing memories!    

 

 

 

 

Clinic visit and Physical Therapy testing

 

This week has actually been a pretty good week.  Caleb is acting more like our cute little boy.  I am so thankful that he has been tolerating all his chemo and medicines so well.  He does get tired during the day,which is totally normal for any three year old little guy.  So he will crash on the couch waiting for Andy and Lexi to get home for school.  It is so sweet how he can't wait for them to be home. 
His hair has stayed about the same.  I'm noticing more on his coat and carseat, but it's to be expected.  Had his hair been cut and shorter when all this started I'm sure we would have had to buzz it all by now.  So, sliver lining..right?

I have noticed his appetite hasn't been great this whole week.  The doctor says it's just because he was on the steroids for a while and it will take his body a while to readjust.  I think that could be the case.  Although I also think the new med that he started this month, the 6MP is making it so he isn't as hungry.  He has also complained of his stomach hurting a few times but nothing too severe.  I guess we will just see how this next week goes.  I'm hoping his eating will pick up.  But for now, we just give him what he asks for and we offer whatever we can, just to get him to eat. 

We got to Primary's at about 9am Wednesday morning.  We had an appointment with physical therapy.  Caleb is part of a study, that throughout his treatment the next 3 years they will monitor his strength, coordination and fine motor skills..that kind of thing.  It's just to see if the treatement he is getting is changing his results in the long run. 

They started out with some strength exercises and they moved to the fine motor skills.  They had him putting little tiny pegs into holes.  Simple right?  Haha!  I was struggling just watching.
They made him use a different hand each time for each thing he picked up.  Then they added more things to the peg board!  It was crazy!  Caleb is a hero is in my book.  Everything he did was timed and he did great!  The woman testing him said it's difficult for older kids much less a three year old!

After the dreaded peg board, they had Caleb go out into the hall and run.  They were seeing how many laps he could make around those cones in 6 minutes.  He had fun with that part.  Mike and I even took turns running it with him.  But can I tell you, six minutes is longer than you think!  The worst part is that because he was having an LP later that day we had to go in fasting.  After he got done running he was thirsty and wanted a drink really bad.  We couldn't give him one because he had to have an emply stomach for his lumbar puncture.  I felt like such a mean mom.



We got to the clinic appointment and had the usual routine.  He is always weighed and his height measured.  Then we head back to a room and wait for them to come access his port.  As of late, this has become a tramatic thing for him.   He doesn't like the cream put on to numb his skin, he doesn't like them touching his port...nothing.  I'm trying to find ways to make this easier and more calm for him.  It hurts my heart to see him so scared and sad.  I keep getting told things will be better in that regard.  I want to help him now!  I hate that I have to just sit and watch.  His labwork came back good.  His ANC was 2600 which is a decent number.  I'll need to check and see what his platlets were.  After clinic we headed downstairs for his third lumbar puncture in three weeks!  I'm so glad we are done with them for a month or more.  He goes in and does really well.  Only this time he was ready for a nap when they knocked him out so he wasn't ready to wake up when it was over.  The nurse in recovery had to resort to the cold washcloth on his belly and face to get him to wake up.  He wasn't too happy about that!  So the good news is we don't have to go back to clinic for two weeks!  Hooray!  This is where they are giving his body a chance to recover before they begin the next round of chemo.  His next round should last 8 weeks.  I'm told by his doctor that he should do well.  It isn't a very difficult round of chemo, unlike others that will be coming up soon.  I'm glad that he will get a break for a little while

 

UPDATE: Sunday, February 10.  Well, me thinking we were so lucky to not have the crud hit our house this year finally came back to bite me in the butt!  Andy, our oldest started out with the cough and high fever.  As much as I tried to keep him away and hid. Caleb woke up yesterday, Saturday, with a fever of 103.7.  While we were in Primary's that first week after Caleb was diagnosed they drilled it into us both, Mike and I, that anytime Caleb gets a fever of 100.4 for an hour or 101 one time.  We call up to Primary's and then head to the nearest hospital.  So I did, and that's what they told us to do.  Now nothing against UVRMC, but I'm more used to a hospital that deals with kids.  I'm glad Mike and I knew what needed to be done so we told them what had to happen.  Caleb had some bloodwork done and an antibiotic given.  They just want to cover all the bases in case he did have something bacterial which could be a real problem.  After a few hours they let us come home.  Caleb is doing ok today, fever isn't bad.  He is playing video games with his brother.  I now understand why all the cancer moms talk about the dreaded "fever".  Because for the next three and a half years ANY fever that he gets and we are back to the hospital just like last night.  It is a pain I'll admit, Mike and I are so tired; but I'm glad they keep such a close watch on him.  They don't want to blow off a fever and have it be the time that it was something really serious.  If Mike and I know his numbers aren't good and he gets a fever then we'll make the hour and a half drive to Primary's.   Thanks for the prayers and thoughts friends...it does help.  Now I am ready for Spring!  Bring on the warm weather and let's get this sickness outta here!

 

 

 

 

Caleb's First Fundraiser

 On Saturday February 2, 2013- We had our first Caleb's Courageous Journey Fundraiser.  It was held at TLC for Kids in Springville; which my sister in law owns and operates.  It turned out to be such an amazing day.  I think my sister in law Karen said it best-It was a day full of family, friends, strangers and love- This could not have been possible if it weren't for my wonderful family who put this together for us.  They all worked so hard making quilts,crafts and baking up a storm!
We had our friend there selling paparazzi jewelry, with a portion of every sale going to Caleb.  We even had someone donate large amounts of cute scrapbook items that were put together in baskets and raffled off.  It was just amazing to see how it all just seemed to come together.


It was so fun to see old friends and neighbors that I hadn't seen in years show up for Caleb.  I can't count how many times I broke into tears that day.  Just from the outpouring of love and support from everyone.  We hugged and laughed and cried like time hadn't passed at all.  It is a treasure to have those friends in your life, and I am realizing that now more than ever.  I am so thankful to all of those that took the time out of their busy day to stop by for us.

At one point during the afternoon it was decided that we weren't getting enough people coming in.  So.....as you can see, Caleb had two Rockettes out there with signs trying to get people to come inside.  Once they brought the music and speakers outside...that was it.  ALL of us girls were out there on Main Street dancing for Caleb and having a blast!  We got honks and waves and people did stop.   It was so fun to just be crazy and silly.  For me personally, it was a moment that I wasn't stressed about medicine or doctors or a million other things that have been thrown in my lap.  It was SO nice to just have a moment to be free and have fun!  I think it's safe to say, any one of us would be back out there in a second to dance for Caleb again.  He is MORE than worth it!  As we finished up for the day we decided we needed a picture of all of us that were there that day....my incredible family.  I can't begin to tell them how much they mean to me...to my little family.  I feel so blessed to have them on our side.  My sister in law Sandra couldn't have said it better..."We are Caleb's Angels and we are kickin' cancers butt!!"