Tyson's Brave Battalion

Tyson's Brave Battalion
Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson

Friday, August 19, 2011

A 'Normal' Day

Is it wierd to say driving to Utah, going to PCMC, getting my magic sticker (IV Port accessed), getting two types of chemo in my port, going under anesthesia, waking up and driving back home (almost 3 hours away) is just a normal day? 
When I first get to Primary Children's I always get to throw a few coins in the fountains at the entryway

After my chemo today in the clinic I had to go to the RTU (Rapid Treatment Unit is a place they do 'quick' anesthesia for simple procedures)  for a Lumbar Puncture (they put chemo directly in my spine on a regular basis). Mom loves it that they let her go back as soon as I start to wake up...it's been a while since we had to visit the RTU, I am such a good patient that I usually do my LP's in the sedation suite at clinic under a lighter sedation than anesthesia (mom likes it too cause she gets to stay with me the whole time and watch them do the procedure)...they don't staff the sedation suite on Fridays though so I had to do the RTU this time.

As soon as I was awake enough to talk I wanted the ice cream that I asked the nurse for before I went under.  He made sure it was in the freezer waiting for me.

I didn't want to leave today cause I wanted to play with the airplane again that they were having me play with while I went under.  Mom holds me until I drop the plane, then we know I am asleep and mom puts me on the bed and leaves.  Mom waits outside until I start to wake up, the whole thing takes about an hour.

I always throw some coins in the fountains on the way out too.

Remember my cousin with two broken arms?  He got one cast off and one waterproof cast so we went to Cherry Hill again to celebrate.  I LOVE Cherry Hill! Thank goodness my ANC is still high (2200) so I can play!

I still feel pretty good.  We'll see in the next few days if the higher dose of Methotrexate I got today has more adverse side affects than I've been having.  Some kids get mouth sores and throw up a lot.  So far I have been really lucky and most days I feel like a 'normal' kid right now.  I'm on day 31 of Interim Maintenance 1.  If you are wondering what that is look for a post in July titled 'Medicine Regimen'

Saturday, August 13, 2011

Phase 3, Doing Awesome!

We are happy to report that there really isn't anything to report! Ty is feeling great and life feels pretty normal right now. As you can see mom even relaxed some rules since I am doing so well. This is me on a playground for the first time since diagnosis!
Mom tried to get the awesome sunset in the background...when she pointed it out to me I looked at it and yelled 'whoa, it's orange! how did they do that?!'
I am feeling great!! I don't eat much for a day or so after my treatment, but after that I eat like a champ and have lots of energy!!
I got to go 'camping' in the camper in Grandma and Grandpa's backyard
We even marched in another parade with the military families for our hometown party today...as you can see I am in a bouncy house...and yes mom made me hand sanitize when I got out. :~)
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I opted out of the traditional 'Fireman Rain' at our hometown festival today...but everybody else loved it! if you look close you can see it still spraying in the background.. we got to feel a cool misty breeze blowing our way for a while, it was HOT today!!
I LOVE to drive the lawnmower with Grandpa...don't worry, the blades aren't engaged
I insist on riding my bike to Grandma's house like the big kids do, so mom puts my bike in the car and lets me get out and ride it when we are almost there.
I am having a lot of fun outside (even though I hate sunscreen with a passion)...see my dragonfly?
Day 21 of phase 3 at the clinic at PCMC. You can see my pump with the light sensitive methotrexate covered up.
Hangin out, watchin Clifford, waitin for my chemo. This night was the first time I thought I was going to throw up, my face got red and mom got me a bucket... it was close but I managed to hold it down somehow. I weighed 15.1 kg today, only down from 15.4 at my last appt.
Ready Set Go!!! Piggy Back races with some cousins

Friday, August 5, 2011

Germs Germs Everywhere!

PICS: I melted an alka seltzer right out of gramma's hand at the family reunion,

We call Primary Children's the 'horsey doctor' so we can tell which one we are going to, this is my second treatment of phase 3, I wear my mask until I'm in the oncology clinic,

me getting chemo (you can see the tube if you look close) with my orange cat prize I picked out of a wagon full of stuffed animals and my green otter pop tongue,

and mom made me a rice pool to play in at my cousin's birthday party since I can't play in the water or sand.
~mom's random thoughts on the germ dilemma~

Having a kid with a compromised immune system creates lots of dilemmas...you are forced to think about stuff that never even occured to you before. People who are this germ conscious are generally considered obsessive and 'normal' people tease them. It is strange isn't it? That good hand washing habits will keep us from getting a lot of illnesses and that if everyone had excellent hand washing habits we would considerably cut the occurences of common colds, influenza, and stomach flu....but the people who do have excellent hand washing habits we consider obsessive and 'crazy'? Why the obsessiveness you ask?

I'll have to tell you a little about blood first:
Chemotherapy affects three important blood cells: red blood cells that carry oxygen, white blood cells that fight infection, and platelets that help stop bleeding. There are usually visual signs of low red blood (paleness, fatigue) and low platelets (lots of bruises, petechiae or little red dots, and Ty gets severe chapped lips whenever his platelets are low) but there are no visual signs that I know of for low white counts. You can also do a transfusion for both low reds and platelets but not for whites. Ty's body has to make his own, and there really isn't anything I can give him to boost them. (I guess Neupogen shots are discouraged with his type of ALL)
So when his white blood counts are low, specifically his neutrophils or Absolute Neutrophil Count (ANC) then we have to be super careful about his exposure to germs and sick people. Even when they are high we have to be careful, but when they are low that means he can get germs that a normal person wouldn't even know they had and it can land him in the hospital for a few days or worse.
Thus the dilemmas: We can't reasonably spend over three years staying home and hiding from every germ, especially because sometimes they can get infection from bacteria already on or in their own body. But where do we draw the line? Activities that are outdoors are better because of the open air and less frequent contact with people and things they have touched. But still outdoor no no's include playing in rivers, ponds, sand, or dirt. When his ANC is high we can attend limited indoor activities, including Sacrament meeting at church with a mask on, but not primary. We are supposed to go to movies, stores, and other public places at times when they won't be busy or crowded. No fast food with low numbers, no soft serve ice cream, no 'licking' the beaters of batter, no cookie dough, no unpasteurized juice or milk products, no sharing spoons, drinks, or tasting someone elses candy or food, no using 'community' ketchup, mayo, chips, and other things lots of hands have touched...lots of no no's!
Probably the biggest dilemma involves people we love cause we LOVE spending time with them!  We hate staying home from stuff, but also know that's our reality right now.  We have been lucky so far in this area, neighbors have been good about keeping their sick kids away from Ty and family members have been good about letting me know about sick kiddos so we can stay home if we need to. My mom has been a lifesaver in this area, even sanitizing her own house when she knows we are coming. A fellow cancer mom actually had her in laws say she needed counseling for pointing out that they weren't washing hands properly after handling raw chicken and wiping little noses with hands and then wiping said nose goo on their pants. The truth is, people have this thing about others germs but seldom do they think about their own germs. It is certainly more awkward to ask an adult to wash their hands than it is a kid. I have no qualms following little kids around with hand sanitizer, but adults are a different story and when they aren't in the habit they don't even notice. (I certainly didn't before I became hyper aware)
It is also easy to forget when he otherwise seems pretty healthy, hair is growing, and he wants to run and play and be normal, sometimes I hate reminding him that he is sick by warning him about something germy and chasing him around with hand sanitizer.
Our three fever visits to the hospital so far have been a result of me relaxing the rules. The first time Ty's counts went up I was like woo hoo!! I let him play with lots of kids and sure enough he got a cough that persisted until it turned into pneumonia, all this while his counts were high! That resulted in a very crappy visit to the ER, a very long follow up visit the next day, and three very painful shots of a gelatinous goo antibiotic. (Rocephin I think it was called)  The next two fever visits were from little tiny scrapes he got on his knee when he tripped and skinned them on some gravel at Camp Hobe. Oh if only I had taken him to the nurses station to get cleaned out properly instead of just slapping some neosporin and bandaids on them we might have escaped two five day hospital stays, lots of IV antibiotics, an ANC that refused to go up, and even more pokies. They were such little scrapes, they barely even bled but his ANC was 600 at the time and apparently that is too low to fight off unknown dastardly organisms. Who knows on that one though, they might have gotten him with proper washing anyway since they were persistent little buggers, they survived through many days of three different kinds of antibiotics. Ten days of a different one is what finally killed them off.
So the battle in my head rages on. It is impossible to follow all of the rules all of the time, but when you relax the rules, even for a little tiny second it might land you in the hospital for a few days. So do I go to something planned, making myself (and Ty) crazy the whole time, or stay home, that, my friends, is the ongoing question. Staying home all of the time is no fun...but spending a few days in the hospital is even less fun.

Have I mentioned yet how much fun cancer is? The most important thing I can say about that though is things could be worse, much much worse, when you see the things that some of these cancer cuties are going through you thank your lucky stars for having the 'good cancer', for doctors and nurses, and for CureSearch for doing so much to find a cure for these horrible diseases.