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!