Clinic Today

Our visit to Primary Children's today was pretty uneventful, in fact they were so fast with everything that I pretty much had to drag Ty out of there.  He was a little impatient at first cause his awesome game finding dad didn't get to come this time so it took us a few minutes to get his gaming arranged.  It was good to be fast and get out of there cause the last thing we want to do is spread any lingering RSV germs to any of his cancer buddies...we were careful to keep to ourselves.

They accessed his port, pulled his blood for his CBC and administered the vincristine all at the same so he didn't even have to get the stinky Tegaderm dressing on!  Most times taking that sticky stuff off is the worst part of being at clinic.  That's the only picture I took, and it's right after they deaccessed him so there's a teeny droplet of blood on his port site.  His counts look good including his liver numbers so all is well!  They aren't changing his chemo dosage or anything.

Here's Ty trying to show his 'big fat belly' the other day...he lost a little weight this month  (17.0kg) and I think he grew some (99.9cm) so his doc asked if we'd ever discussed appetite stimulants before.  I guess I need to make him some more spinach peanut butter chocolate shakes!  He has been pretty fussy about food lately, in fact he wouldn't even come in the kitchen tonight cause he couldn't stand the smell of the chicken soup in there.  (I thought it smelled and tasted delicious!!  Thank you for dinner!!)  One minute he'll be eating something and then next he'll be gagging on it and spitting it in the garbage, it is really random. I wonder if I should be giving him zofran again.  Maybe we will try that and see if we can get him eating a better variety and a little bit more!  Of course he is starting his 5 day pulse of steroids today so maybe that will help him eat more this week.
Counts today:  I'll put the normal range of each in parentheses.  WBC 3.2 (5.5-15.5), RBC 3.61 (3.90-5.30), HGB 11.2 (11.5-13.5), HCT 34.1 (34.0-40), PLTS 390 (150-400), ANC 1200 (1500-8500)  So his ANC is close to 1000 which is where they want it to be.  His oral chemo is what keeps it there, and it causes the other numbers to be a little low sometimes too, but as long as he's on the right dose they don't get too low.  It looks like for now he is on the right dose.  Now if we can just keep the germs at bay and stay out of the hospital!!  Bring on the hand sanitizer!!
On the way home we made a pit stop at a gas station and I let him pick out some candy.  When we got back in the car he said as he ate his candy..."I'm okay with being sick....cause I get whatever I want when we go to the hospital"  Then he giggled.  CHIPS...cancer has it's privileges. :)

Going Home!!

 They tried Ty without oxygen a few times yesterday, he kept it at around 89-90 most of the time, but it would dip lower occasionally.  I had him jump on the bed a few times to give his lungs some workouts.  In this pic he is watching the monitor and taking a deep breath to see if he can get it to go from red back to blue.  When it's red 87 or below the alarm goes off. 

 We play a game where I make words in dots and then he traces them.  On this one he made the dots himself and then traced them

 And then he had me add a few words.

His Aunt brought her tablet up and that entertained him pretty much the rest of the day.  I even got him to eat his whole chicken breast while he played.  We haven't seen the doc yet today but we are super excited because he stayed off oxygen the whole night.  He's right on the border of needing it still so we'll see what the doc says about it.  Hopefully he is satisfied and lets us go home!!!
Update...we just saw the doc and we are good to go!  Yay!

Update

Tys feels pretty good, he even started playing with his bed controls last night and shooting nurses with his nerf guns.

 They had him clear down to 1/8 of a liter of oxygen yesterday by evening, but during the night he ended up back up to 1/2.  So the doc would at least like to see him at a stable level.  If he gets to a level where we know exactly how much he needs he said he might let him go home on oxygen...but it looks like we are here for at least another night.

Look no nose tubies!  The nurse was adjusting stuff this morning and decided to turn it off for a while and see what happened.  They will probably have to put him back on but he is nose tubie free for a few minutes.  Thank you Michelle for the treats!  That's what he's lovingly hugging in the picture.  He weighs 36lbs 4 oz which if that was an accurate weight he has lost a little cause he weighed 37.6 at his last two PCMC appointments.  I'm not sure if they did a CBC today, I'll have to ask. That's it for now.  Thanks for checking on us!

RSV

Ty started fevering again last night so we took him up to peds at the hospital so the doc on call could take a look at him.  The good news is his ANC is 2000, the bad news is his oxygen was at 77 when they hooked him up last night and it was taking a liter of oxygen to get him up over 90.  He tested positive for RSV which explains the oxygen problem. He is not a fan of the oxygen tubies in his nose and has been pretty quiet since we got here.

Since his ANC is good and the thing he is fighting is viral he doesn't have to be on antibiotics which is awesome.  They did a chest xray last night and it looked good

So they are going to try to slowly wean him off the oxygen today and see how he does.  So far he is doing fine at 3/4 liter.  Hopefully that will work and we will be home tonight or tomorrow.  Hopefully.

CBC this morning:  WBC 3.2, RBC 3.45, HGB 11.1, HCT 34.1, PLTS 205, %lymphocyte 31, ANC 1700.  His absolute lymphocyte count is a little low (1.0) which seems strange to me but I don't know much about it.

Doc appointment, CBC

We took Ty to see his pediatrician today for a CBC and to get a general checkup.  He's been especially pale & tired lately, always wanting snuggles and having an extra hard time any time he doesn't get his way. It's kind of like he's still on steroids even though he's not.  His doctor was very thorough, I love how he listens to everything I say and takes it all seriously.  He said Ty probably does feel crummy even though he's on such a low dose of chemo and he thinks we are doing a good job with him and not babying him.  It was nice to hear some reassurance from a professional not only that he looks fantastic, no signs of relapse, his liver looks good etc, but also that we are doing okay with him emotionally and discipline-wise.  Sometimes I wonder if this experience is making him a little too pampered and spoiled.  Then I remember what it feels like to be ill and nautious and we do snuggles as often as we can to help him feel better.  He's been on chemo since he was 3 and I wonder if he even knows what it feels like to feel all the way well, or is able to recognize those feelings.  He refuses to tell me when he doesn't feel good, but I can tell when he doesn't feel good cause he wants to sit on my lap and hold my hair (my hair is kind of like a security blanket for him).  It's hard to decipher just how he is feeling cause one minute he is running around playing and having fun and eating like any other kid, the next he is gagging on his food and spitting it back out or begging for snuggles.  He's a little trooper, I wish I could crawl inside his head and see what it's really like.

His ANC is a little low, which is surprising but everything else looked good.  His sister has had flu-like symptoms all week with a high fever (it was 104.9 last night) even though we all got flu shots.  So our house smells like a swimming pool cause we are trying to keep the flu germs isolated to just her.  She seems to be doing a little better today.  We are hoping we can skate through this one without it spreading.  Keeping our fingers crossed...and sanitized.

CBC results: WBC 2.6, RBC 3.55, HGB 10.8, HCT 35.5, PLT 280, ANC 600. Everything a little low except platelets, but not low enough to worry about too much. 

Still praying for Millie and the other cancer fighters who aren't doing as well as Ty.  We are super thankful to Justin Bieber who was late to his own concert in SLC so he could visit Millie.  She really needed that little uplift as she fights Ty's type of cancer for the 3rd time.  Never underestimate the power of a bunch of moms of kids with cancer when they set their mind to something!  We witnessed that at the CureSearch SLC walk as well.  I sure love the Utah Moms with Cancer Fighting Cuties!

Thanks for checking in!

 

Jan 14 2013

 

I'm just going to add to this post since it was just another doc appt and CBC.  Ty fevered today so we went to the Children's Clinic for a CBC, blood cultures, and he was tested to see if he had the flu and got 2 owey Rocephin shots in his legs.  He's been hobbling around ever since.  We were at the doc for a couple of hours and then went straight to Walmart for 4 pokie prizes.  One for the blood draw, one for the flu test (heinous thing stuck way up his nose), and two for the shots.  He says he likes pokies now cause he likes poky prizes..except for leg pokies.  I've heard Rocephin shots hurt a lot.  Remember way back in May of 2011 when he used like 20 boxes of Phineas and Ferb bandaids nursing his pokies?  Yep those were Rocephin shots.  He has changed so much since then!  His ANC is still 600 so he didn't have to be admitted to the hospital. Yahoo!!!  600 is kind of low but not low enough to be considered severely neutropenic.  For my records: WBC 1.9, RBC 3.77, HGB 11.5, HCT 38.7, PLT 296.  

 

 

Happy New Year!!

Our house still looks like a Christmas bomb went off in it so this morning we told the kids that when we got the house clean we could go sledding...Tyson is still on steroids so he spent most of the morning begging for snuggles.  For him snuggles means he sits on my lap on the couch and we watch TV.  He requires snuggles at least once a day, most of the time he asks for them multiple times a day, and when he's on steroids snuggling all day long would be preferable.  He always looks a tad zombie-ish when he is on steroids, I'm not sure if the picture captures the look or not..

One of the reasons we thought it was kind of funny that they told us to call if he turns yellow was cause he always has a pale yellowish hue when he is on steroids...we also made several jokes on the way home about casually giving them a ring if our son's liver started to fail...I'm sure you had to be there to think it was funny, cause it's not funny, but that's why it was funny...and you make dumb jokes to keep the worry from making you crazy...cause it's crazy to worry so much, especially when the doc isn't worried that much...so you try not to worry but you do anyway, and so...crazy.

 Soooo we got the house clean enough to pass inspection and went sledding

 Ty had so much fun he outlasted Brenna, Brooke, and Merin. They sat in the car for about an hour while we did several 'one more times'.

 He even slid down without a sled a few times.  2 1/2 hours of sledding wore all of us out!

He lasted until about 8:45 tonight and then asked me to put him to bed...so this is what he was doing when 2013 began. 1 year 8 months of treatment down, 1 year 7 months to go!!!  He is officially over halfway done!!  Happy New Year!!