Snowy Day!

So I'm starting off this weeks post with more hair pictures.  I guess that has become our pre-clinic routine. :)  I love how he is giving us the 'I am strong and I will fight' face.  I love this boy, he totally brightens my life.  Yes, it's thinner still but the doctor thinks he'll hold on to it till Spring.  So hey, that's a plus, his head won't be so cold, right?

 

Because of the fantastic weather this morning the drive was...well...how shall I say?....interesting!  I am so grateful that Mike is such a calm driver.  Not much can get him upset.  I'm glad that I could sit in the back seat and try not to watch everything going on around me.  Luckily Caleb slept for most of the drive. That always makes it easier, sometimes that car ride can seem pretty long.

            With everything considered, we made pretty good time and only ended up being about 15 minutes late for our clinic appointment.  Today was an easier appointment; if you could call any of this easy :)   He didn't have any IV chemo today.  They just did the routine bloodwork.  Which he still isn't thrilled about them accessing his port in his chest.  I can't really blame him though, I wouldn't be happy with a needle coming at my chest either.  But with time it will become something that he will  hardly notice.  The nurses up there are really great and try to do everything possible to make this an easy process.

 The doctor even told us today that at a certain point in treatment Mike and I will be giving him some chemo at home through his port...US!  WHAT?!!  I'm sure I'll handle it and get through it fine, but it makes me all kinds of nervous just thinking about it.  Good thing it's a few months away.

 

 

 

His labwork came back good.  His ANC is nice and high and they like to see that.  I think it was about 6000 or something, which is really high.  But it's good, so he can have a better chance of fighting off infection, if he got one.  His numbers will go up and down all throughout treatment so we just have to keep an eye on them.  That's one of the things they look at when they do his bloodwork.

After we left the clinic we headed down to the RTU for yet another Lumbar Puncture.  He will get to have another one next week, I know, fun huh?   He is just amazing getting through these.  In this picture to the right he is in the recovery room and still looking a little dopey from the medicine.  But still willing to give Mom a smile for the camera!  After eating his Doritos of course! Haha!

 

 

Now today I'm ending with this picture.  For any parent that has ever had a child with cancer at Primary Children's they know what this bell means and represents.  When a child has finished treatment and won the battle they get to ring this bell loud and clear.  To let everyone know they are walking away a champion.  Mike and I first saw this bell (which they have a couple on the Oncology floor) when Caleb had just been diagnosed and we were spending that very long week in the hospital.  We were both so numb and lost that whole week.  But I remember when we first saw it.  We stopped and read the plaque together, tears rolling down our cheeks.  Both of us imagining the day when Caleb will ring that bell loud and clear.     

Ring this Bell

Three Times Real Well

It's Toll to Clearly Say

My Treatments Done

This Course is Run

Now I am on my Way!

 

 

                                                           

Consolidation begins

We arrived at clinic today ready to start our next phase in this journey...Consolidation!

Since he had HomeHealth do his blood work yesterday they didn't have to draw anymore blood, which is always nice :)  And they left his port accessed from yesterday so they didn't have to poke him again today....an even bigger plus!

But as you can see, Caleb doesn't like to watch when they give him his chemo....(he's still my big strong boy!)  They gave him Vincristine, which is the med that he has been getting since his first day of treatment.  He usually doesn't have any problems with it afterwards.   But he did come home with a new med to take here.  It's called Mercaptopurine or 6MP (I still haven't figured out why they call it 6MP, I guess I'll have to ask next time.  He takes 1 pill a day 50mg, at nightime.  I haven't given it to him yet tonight so I hope it is one that he can tolerate and it won't make him sick.  Here's keeping my fingers crossed!

After we left the clinic we went downstairs to the RTU or Rapid Treatment Unit.  It's like a same day surgery.  That is where they have to put him under so he can get his chemo medicine in his spinal canal.  He isn't out too long, but they bring us into the recovery room when he is waking up like in this pic.  He is usually hungry and wanting to eat something since he had to go in fasting from the night before.  He will lay here for a bit, have a little to munch and then we are discharged and ready to come home!  I can't believe that this has become routine...amazing!

What a couple of weeks!

O.K. so I'll admit that I haven't been the best at keeping up on this blog.  But now that we have our laptop fixed once again, I'm here to catch things up.
We found out after Caleb's last bone marrow biopsy on January 7,  that.....he is in remission!  HOORAY!  I wish more than anything that I could say that we could be done with treatment.  The honest reality is that he still has the 3 1/2 years of treatment to still go through.  But we are so happy, as well as his doctors that he responding well.  People have asked me why can't he just be done if he is in remission.  The best answer I can give is that he still has Leukemia cells in his body somewhere whether we like it or not.  That's just how Leukemia is, and we want to make sure ALL of them are gone for good!  It also gives his body a chance to learn how to deal with all that's happening.

So the week after his bone marrow biopsy was spent off all of his medications and no chemo treatments.  That way his body could build itself back up so they could start the next round of chemo.  Well, when HomeHealth came out to draw his bloodwork, they found out that his numbers were too low.  They like to see his ANC, or the cells that can fight infections at 750 or higher.  His were only 650 or something if I remember correctly.  Sooooo we had another week of no treatments or chemo.  He is starting to act like my little guy before all of this happened.  We even let him go outside today for just a few minutes since he hadn't in over a month and a half.  I hate to think of how he was just that short time ago.  He was so sick and just laying on the couch. But to see this cute face it just breaks my heart to know he still has to go through it.  But we will do whatever it takes to get him healthy again!

This picture is after the nurse came and got his port hooked up today. He still really hates to have it done but after...well that's a different story.  He likes to show off his cool tubes to everyone.  And I still say he is the strongest boy ever. :)  They just called me tonight with the results and his ANC is 1000.  So we are good to go to Primarys tomorrow to start his next round of chemo.  This next phase is called Consolidation and it goes for 4 weeks.  He will get his regular chemo and a new med to take at home.  The hardest part will be lumber punctures that he will have for the next 3 weeks.  They do that so they can get the chemo into his spinal canal and up to his brain to get any cells that might be hiding there.  I know it really sounds awful but, he has had 2 of them done before and he seems to get through it alright.  It's just the waiting part that is hard on Mom because they have to knock him out to do it.

 

 I have discovered lately that I take quite a few pictures of Caleb's hair.  I guess I'm just holding on to what I can.  You can't really tell in this one, but it is getting thinner.  Perhaps only a mother would know the difference.  But I think he is so darn cute he will still be a cutie either way!  I have had some very low moments the past few weeks as well as wonderfully high ones as well.  Some thanks in part to good friends who listened to the spirit and reached out when I really needed it. This is a journey I never thought I could take, yet here I am.  I am amazed daily at Caleb's strength and positive attitude.  He is the one that reminds me to just be calm.  He has always been our little peacemaker.  I am so grateful for this awesome little boy!  I hope all goes well tomorrow.  Because the sooner we get there the sooner these 3 years will be done! :)

 

 

One Month ago today

One month ago today we were sitting in a small room at Primary Childrens hospital.  Our world having been forever changed by the knowledge that our son had Leukemia.  The exact type is called-Pre b Acute Lymphoblastic Leukemia.  Caleb had been poked so many times in the short time that we had been there I think Mike and I were ready to cry! :'(

We have made it through our first 30 days.  It feels like a big accomplishment!  We have been on such a roller coaster of emotions.   The road ahead is a long one.  It will be filled with many ups and downs, we know that.  But we have felt so much strength and love from those around us.  We know that Caleb is an amazingly strong boy and that we can beat this!  For now we will continue going to Primary Childrens on a weekly basis for treatment and labwork.  I hope that this blog will be a way to document this journey not only for ourselves but for our loved ones.  I will be posting after every appointment to update everyone on the fight.   Right now we are waiting for results on some of Calebs bone marrow that they removed to be tested.  So far he seems to be doing well.  He is tired alot but he is such a little fighter!  He tells us almost daily, "I the strongest boy, right mom?"  And YES he is!