Jo is at her half-way point (13th week out of 26) with the chemo & has her CT/MRI scan Friday, Feb. 1st to see where things stand so far after the first half of the 3 different chemo medicines she's endured.  The doctors say they really don't expect to find anything new & expect to find the
tumor looking like it's actually 99% gone if not completely.  It's still a nerve-racking thing though - just the thought that there may be another tumor somewhere is terrifying.  When she first was diagnosed there was only the one tumor thankfully, so we're keeping our fingers crossed that is
still the case.

With the exception of losing her hair & eyelashes, she is a very happy, healthy & normal little spitfire - just like her Mommy!  She still manages to be "well enough" to make her little brother's lives a living HELL EVERY chance she gets, which for some reason seems to be several times a day every day! 

I remember when the shock finally wore off, which for me was at least 3 weeks, & the reality of everyday life really set in.  We were warned by several at the hospital when they heard Tom & I saying: "We'll NEVER holler at her again!  We'll let her do whatever she wants, when she wants & do anything we can for her!  Wow do I feel bad (both of us speaking) for all the times we yelled & put her in time outs, took TV's away, etc...All those days are done!"  They didn't waste a minute & the pediatric oncology surgeon, life coach & social worker rushed in with their eyes wide open.  "OH STOP RIGHT THERE! DON'T EVEN THINK ABOUT DOING WHAT YOU JUST SAID!"  Of course we were a little taken aback at their insistance
we shut up & listen - which they didn't say, but their actions told us to. We were WARNED NOT TO stop disciplining her at all!  Keep doing the same things we always did!  Don't change home life at all!  Just because she has this evil disease doesn't mean she shouldn't be treated like any other 6 year old kid when she is naughty!  They told us "horror stories" (at least that's what I took them as!) of parents who did just what we planned and they ended up with the most SPOILED LITTLE BRATS ever!  After they talked with us, we realized what they were saying made a lot of sense, though it still was going to be tough for us, knowing what she has to go through in
months to come.  Needless to say...it didn't take long and the guilties flew out the window!  It made no difference in her actions towards her brothers, therefore we had to keep our actions in check with the time-outs and all. 

After we explained it all to her (every single aspect except the actual word Cancer), she did understand it since she's known people who've had it and either gotten better, worse or even died.  My best friend Randy lost his 29 year old wife a year ago, leaving him to raise 3 children alone.  So she's been exposed to the bad & the hopeful aspects of the disease, knowing that everyone in the world can get it since it's in everyone's body, but only some actually have it "come out" or whatever.  I also explained that not everyone dies, has to have several surgeries, years of therapies & such - and eventhough she has this "sucky sick" - as we named it - she has the kind with the best cure rate, and only ONE tumor to deal with.  In several ways we are glad that the tumor was so visible.  Not just because it allowed us to catch it unbelievable fast, as the doctors said, but it was easier for her to understand she HAD it, and could SEE it, therefore
knowing it was a serious sickness.  I think it would have been tougher to explain had it been hidden in the body where it wouldn't make sense to tell her she's sick when she's not the "typical sick", looked & felt fine.

The only time she is a little less active is right after her overnight chemo sessions (which are also thankfully done!) since she sometimes has an upset stomach.  But even then, she gets maybe 2 doses of anti-nausea that night in the hospital, then maybe 1 or 2 at home, then she's right back to 100%!  We've been SO lucky she has been so healthy, as have the rest of us - Tom, me & her identical 4 year old twin brothers Tommy & Tegan.  It must be all the hand washing, antibacterial wipes on everything everyday, not taking her anywhere except her appointments & if we run errands around town.  It's tough on her at times, but she totally understands why we don't
want her to go to stores.  With people usually sick this time of year EVERYWHERE in public, just hearing the coughing, sneezing & the thought of people not washing their hands then touching carts, etc...well, I'm sure you understand.

She did spend a couple hours at her benefit.  It was so great to see her there running with her best buds!  Her eyes just sparkled their brilliant lake blue and she had that special shine that only kids get when their hearts are warm & happy!  It did ALL our hearts good.  Tom really fought
against letting her go with so many people, some we don't even know, being there.  The chances of people there being sick with even a cold is 100% of course, but like her doctor said right at the beginning, don't put her in a bubble, just do your best to keep her away from known sick people or those around them.  We put a sign up right at the entrance that said "We appreciate so much you came to support Jolee Mae.  As you know, she needs to stay as healthy as possible and the chemotherapy makes her not as able to fight off viruses.  We ask that you respect this and not to hug or get real close to her so she can remain the healthy girl she is!  Again, thank
you for coming and understanding this request - the family of Jolee Mae."  I don't know what people thought of it, but I really don't care either! The way I look at it, it's common sense really.  Plus she isn't one of those who is into hugs from people she don't know - even some relatives she
don't see often, so it wasn't any big deal to her either.  My family has been so terrific with that since it's a tough deal for them!  She was their first grandchild, my first child and everyone's little girl.  They understand and some have even gone without seeing her after they've gotten well from having a cold - I made a 7 day rule that if you've been sick with anything, you must wait 7 days from your last symptom before coming to the house.  Maybe I'm a little overboard with all that, but it's kept her healthy and we all know it's worth it. Still, relatives come see her
weekly as long as they haven't been exposed to anyone sick.

Friends & family have brought her gifts like you've never seen!  Christmas was really tough for us this year since she got the equivalent to 5 of them all within a month - BEFORE xmas!  In all seriousness though, it was particularly tough for me in a whole different sense - her little brothers
don't get it.  They were told all about Jo's "serious sickness" and that was the reason people were fussing about her & giving her so much out of the blue, with only a couple of them thinking of the boys.  I realize they don't HAVE to think of them & I don't want to seem ungrateful, that is
totally not the case since I appreciate everything everyone has done & given to her!  It's just still hard for 4 year olds to understand why they aren't getting these presents too.  Plus, to them, Jolee isn't "sick".  I remember they said to me "Mommy, Jolee is FAKING!  She isn't even coughing
or puking!"  That is their view of being sick since that's all they know! Makes sense to me too, if I were a young child.  So it's been expensive & heartbreaking in that way because I went and bought a LOT of things for them to just keep hidden for whenever she got more - I'd stick things in there saying the people who sent it for Jolee, also sent things for them. It worked, put smiles on their face and made me feel much better.  It's hard to say that since like I said before, I never want to seem ungrateful to anyone - but I'm sure you get it.

So before I end up writing a novel here with nothing to do about her bio when all this started, I'll shut up and get to it.  This is from combined letters I sent to Tom's friends & family as well as mine, kinda tailor made to each so they know what I'm talking about - so you may have to edit it
yourself to do whatever it is you need.  Still, all the information is accurate & true - sadly - but here it is, all the way to the present, and the diagnosis we were given along the way.
 

End of October, beginning of November 2007:


*We had noticed Jolee's right eyelid swelling a little and not being as open as the other eye on a Saturday towards the end of October.  Sunday it looked a lot worse, so Tom took her in to the local Urgent Care here in Hibbing where a "doctor" (arguable as far as I'm concerned now) diagnosed her with "a simple eye infection with a cold settling in", gave her eyedrops to give 4 times a day & use warm & moisted salted packs on her eye a lot.  Also was a small bump about the size of a pencil eraser top in the inner corner of her eye, which the doctor said nothing about.  Just if she got worse, take her to her regular doctor in a couple days.  Well, Monday morning - that lump was to the middle upper eyelid, doubling in size overnight.  Her eye wasn't red or hurting, nothing oozing out of it and her vision was perfect.  We kept with the drops, all the while with me knowing it wasn't any infection or cold.  Tuesday was the final straw as the tumor had tripled in size in 2 days, now reaching the farthest outer corner of the eyelid to the end of the eyebrow. 
 

Tom took her immediately to a specialist in Grand Rapids, who immediately said as well that it's no cold or infection, then called to get her into one of the best eye surgeons in the state of MN, Dr. Shuey.  Early Wednesday morning, with the eye now almost swollen shut & bruising, Dr.
Shuey took one look & said he needed a biopsy right away the next morning. Later he confessed he was afraid it was malignant since the lump DIDN'T hurt her.  The biopsy took place Wednesday that was supposed to be a 45 minute surgery, and ended up being 2 hours.  Then the blow - it was cancer. At that point, everything was a blur as I dropped to my knees screaming & swearing at everything & everyone, wondering how & why this could happen to a child.  The very next morning, she had a 2nd surgery to install a port through her jugular vein in her neck & out a whole they put in her upper right chest to put the port itself for easier access for the chemo's &
blood tests and all so they wouldn't have to poke the poor thing so much.

So from it being a "simple infection/cold" on Sunday, thanks to that mother's gut feeling, was cancer by Wednesday - but caught so early that it even surprised the surgeons.  They said there really was no way to catch it any earlier since who would think a slight swelling one day could triple 2 days later and be something as serious as cancer.

We opted to have her be in a special study between St. Mary's Hospital in Duluth & the University of Minnesota Hospital in Minneapolis that are using information on cancer treatments to find out if shorter yet more intense chemo works as well/better/not so well as long term yet not so strong
chemo.  Her prognosis they gave after finding through CT/MRI seeing there were no other tumors & that the one on her eye wasn't attached to anything at all, just barely under the skin - is better than 97-98% with a 2-3% chance of recurrence in 20 years.  It's the best we could hope for as far as statistics go.  We agreed to be in this study for two reasons:  Not only would all of Jolee's medical information during the entire process be studied by the Duluth specialists in Oncology, but also a panel of well-respected experts at the UofM.  Also, if we can be a part of anything that can help others with cancer fight it in an easier way or better way, than we will do whatever we can.  AT least her fight won't be in vain.  The most important thing I need to get out to people is DON'T BE AFRAID TO GO WITH THAT GUT FEELING THAT TELLS YOU SOMETHING ISN'T RIGHT.  IT DOESN'T MATTER IF A DOCTOR TELLS YOU IT'S ONE THING OR ANOTHER - IT'S YOUR CHILD OR
YOUR BODY.  DON'T JUST TAKE THE ANSWER THEY GIVE YOU - SEEK 2ND & 3RD OPINIONS UNTIL YOU'RE SATISFIED THAT THE DIAGNOSIS THE RIGHT PERSON GIVES MAKES SENSE AND YOU FEEL A TRUST WITH THAT.  Doctors make mistakes daily, they're human too. In my case though, that mistake could have cost my daughter's life if we'd let it go.  I'll always be grateful Tom & I didn't sit on the answer that Urgent Care doctor gave us. We KNEW it wasn't right.

Sincerely,
Trena & Tom Howell