Kieara

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Boo
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Kieara

Post by Boo »

If you guys remember, last year Boofest helped our Kieara. I just received some feedback. It's a bit long but it's truly worth the read! Just put yourself in Jeff's (Kieara's dad) position. Below are 2 messages from Jeff;

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I'm sitting on a stump, deer hunting in Northern VT., approximately 9 miles from the Canadian border. It's a beautiful day.
As we approach the 1 year anniversary, of my first born daughter's diagnosis of a grade 3 cancerous brain tumor, I don't really know where to begin. Part of me feels like its been 10 years, while another part of me feels like it was yesterday.
In fact, I had returned from deer hunting last year, when my wife told me that she had herd from one of Kieara's coworkers, that Kieara was in the hospital ER as a patient.
It was decided that we needed to be there with her, as we knew that something was up. Kieara has been so independent since the day she was born. I'll never forget that whole experience either. From the moment that she took her first breath, she didn't cry. She, with her chubby cheeks, blinked her big blue eyes several times, and gave me a look as if to say... "Hey Dad" ! Bev got to hold her for a min.
She said, " Hi Kieara, welcome to the world", and gave her a kiss. The nurse quickly cut her cord, and whisked her away. I guess they didn't like her color, or some scoring thing, but I knew she'd be just fine. A few min. went by, the nurse asked if I'd like to come get her, and bring her back to see her mom.
I'll never forget that feeling, it's something that I can't describe.
We've had child number 2 and 3, which were just as amazing to experience, but there's just something about that first time for me.
We brought her home from the hospital, after a week or so, she slept the entire night, see...
She's always enjoyed her sleep!
The memories that I have of her childhood are too countless to list here, but a few come to mind. She had this stuffed goose, that she dragged around by its neck, I can't remember if it had a name, but it was always her constant companion. We also had a kitten, his name was Kirby. She'd tote Kirby around the house by his neck too. For whatever reason, occasionally, Kirby had misbehaved? Kieara would open the basement door, throw Kirby downstairs, close the door, and exclaim bad Kitty ! Kirby never grew. His entire life, he was the size of a kitten.
I'm not sure if it was due to lack of oxygen or why.
I recall it being a treat to go McDonalds. Upon one visit, with the parking lot very icy, Kieara slipped and fell while holding my hand.
Trying to break her fall, I slipped, and would have crushed her, had I landed on her. She landed face first, loosening her two front teeth, I sprained my left wrist. A couple of whimpers were made all better with a happy meal.
She's never been one to cry or fuss over much, unless a very good reason. No drama, No nonsense, ever.
She was quite excited when her brother was born. She was so proud, and catered to every little peep that he made.
She may have been 4 years old or so, she could tell you exactly how old, due to her incredible memory.
Bev signed her up for baton lessons. She did quite well. She'd practice in the house and it was pretty entertaining. They had a routine to learn, as there was going to be an end of the year recital.
Kieara memorized every move. Because she had, they put her in the front row, to lead the rest, who may have forgotten what the next move was. The music started, the girls started the routine, everyone was right on cue. Toward the end of the routine, Kieara decided on her own, to jazz things up a bit. It was Hilarious. The crowd went wild, and started chanting for an encore performance, which was granted. Really funny stuff. There was soccer, basketball, softball games, the jump rope team and dance too. Kieara was a busy kid.
She worked at the town recreation department.
She took classes to qualify as a swim instructor, and classes to become a lifeguard too. The town swimming pool, was about a mile from our house. She decided that a better bicycle than she had, would be a good thing to have. She saved her money, and bought the bicycle that she wanted. I'm not sure if I had bought the bike, if it would have had the same meaning for her?
She has always set goals for herself, and has always achieved each goal. It hasn't always been easy, she's worked at everything that she's accomplished, but again, she's always prevailed.
A couple of girls in high school, were trying to get enough girls to sign up to establish a high school girls ice hockey team. Kieara, not having skated very much, let alone ever played hockey . After a bit of convincing by a few friends, she decided that she'd give it a try. She was the final name on the list, needed to form a team. It was quite a lot of fun, she even scored a few goals. There were a few times, when things got tough, it was mentioned quitting. No particular sport or activity, but recall a few times. She was always encouraged to continue. If she didn't want to go back the following year or whatever, fine. Quitting wasn't an option.
Learning how to drive was a challenge that was quickly overcome too.
Bev is responsible for most of the instruction given, however I do remember her driving me around town in my pickup after dark, to get enough hours logged to qualify for her exam.
She got her drivers license on the first try.
Well, now she needs a car. She got a nice, black VW Jetta. Her smile was from ear to ear. She was so proud. She's always been a good driver, only a couple of little mishaps however, I still question the story about hitting a raccoon on the interstate. I suppose it's possible to hit one however , I've never seen one that was 3 feet tall, but we'll go with that story... HaHa !
When it was time to go to college, she did some research, visited a few places, and decided that South Dakota was the best fit for her. I for one, was disappointed to have her so far away, I know her mom felt the same way, but we didn't discourage her from going there. I do regret never going on one of the cross country trips between VT. and So. Dakota, which Bev and Kieara did together 8 times. Some of her best friends live in, and around So. Dakota, Nebraska and Minnesota.
We made the trip to Portland in less than 3 hours, thanks to State and local police. We found Kieara in the ER at The Maine Medical Center. It's the hospital where she works.
She wasn't very happy to be there, and the first thing that she said to me was Happy Birthday.
She said she really didn't want to call and bug us on my birthday, the day before Thanksgiving, knowing that we had plans. She is a whole lot more important than my birthday, or Thanksgiving, which occur every year, and will continue too, until they don't.
The Doctor and nurses had been doing tests etc. prior to our arrival. They had told Kieara that there appeared to be an area in her brain, that needed to be followed up with neurologist. They showed us a picture that they had taken, and it was clear to see that there was something that didn't belong there. They discharged her to home. The next day, we hung around Kieara's place, not really knowing what to do, or expect.
Everything in the medical field was closed. It was Thursday, Thanksgiving day, and of course no one works on that Friday either. So, Kieara calls around and finds a place that was serving Thanksgiving dinner. We went, and enjoyed dinner together however, we were briefly interrupted by an elderly woman choking. Kieara called 911 and I went to assist the woman. The woman's daughter was successful in dislodging the piece of turkey that she was choking on, so a happy ending to that event.
We stayed in Maine until Kieara finally got the ok to come home to VT. with us. I believe the date was Nov. 27.
In Typical Kieara fashion, she contacted friends in the medical field, from Maine to the Midwest, researching what could possibly be going on in her head, treatment options, possibilities etc. so, that when she finally had an appointment with a neurologist, she'd have questions that could hopefully be answered.
I believe 12-3 we finally got an appointment with a neurologist in Portland.
It was then that her neurologist told us that it was a brain tumor, and that she had shared the test results with a local surgeon, and that the surgeon had set aside a time slot for her in case Kieara decided to go that route. All of this was set up without Kieara's knowledge. Hippa was ignored. I saw it, as everyone taking care of one of their own. We had many questions for both the neurologist, and surgeon, and ultimately Kieara decided that she was comfortable with staying in Portland for the surgery. Both Bev and I agreed. Kieara had Surgery December 8th. Her surgeon found Bev and I in a waiting room after surgery. He said that everything went as planned, however the tumor was a bit larger than he had originally thought. He was able to remove approximately 2/3 of the tumor, which would be sent to the Mayo Clinic in Rochester Minn. for the pathology results, which would determine
future treatment options if any.
He also told us the best case, would be to hope for a grade 2 tumor as they are much easier to treat than a grade 3.
He said, pathology would determine that.
He was careful not to commit to anything, and I understand why, and appreciate that. He did however say, with his experience, it was greater than a stage 1 however, he didn't believe it was stage 4. Again hoping for stage 2.
Kieara was discharged, I believe on December 10th. Dates and times seem to escape me, for the last year. I didn't want to miss an appointment, but I didn't want to use up my time off from work, not knowing what the near future would be holding.
I stayed at Kieara's, until the 13th, returning home alone. Thinking back to that trip, I wasn't fit to be driving, however learned that it's possible to travel I95, at 80mph crying the whole way home. I debated turning around a couple of times.
Bev stayed with her, not knowing when to expect the pathology results. I certainly wanted to be there at that appointment.
I believe it was 12-16 when Bev called me at work saying that the pathology results were in, and they had an appointment that afternoon. I hurried over to Portland, again, less than 3 hours thanks to the cops .
I was about 15 min late to the appointment.
The Dr. Told me that he'd briefly go over the results with me, as he had just gone over them with Bev and Kieara. He bluntly said that it was a stage 3 cancerous brain tumor. He told us what his treatment would be, both radiation as well as chemo therapy.
At that moment, I wanted to get out of the chair that I was sitting in, grab him, and beat the hell out of him. It wouldn't have been good for either of us. I remember thinking, what do I do? Do I cry?
Do I leave? Do I just beat the crap out of this little puke? Looking at either Kieara or Bev wasn't an option, I needed to suck it up, listen the best that I could , and get the hell away from this little punk as soon as I could.
It's not about me at all.
But, this Dr. should return to charm school, I think he missed a couple of classes on how to deliver such news?
He was about 5' nothing tall, so maybe he had the little man thing going on? Whatever the case may be, I wasn't the only one who was not impressed, however, I kept my opinion to myself. We left that office, and went to Becky's Diner for a late lunch. Kieara rode with me, to assure that I didn't get lost. On our way, Kieara said to me,
"Wow Dad, a month ago, who would have thought we'd be dealing with this?"
Lunch at Becky's was as good as always. If you've never been, it's a must.
Not at all surprised, Kieara had done prior research on treatment options, just in case.
She asked the little Dr. about Proton Beam radiation during her appointment. I had no idea what she was talking about, but he seemed to dismiss that as a viable option, stating no real benefit opposed to what his plan was for her. Kieara expressed her dismay with this Dr. and Bev did as well, and as you can imagine, I did too.
Kieara has had 1 pound patients born with cancer. Their best treatment option, is Proto Beam radiation as opposed to traditional whole brain radiation. Proton Beam, damages 60 percent less, healthy tissue than the whole brain radiation. Again, Greek to me, but Kieara knew all about it. She also knew, that Mass. General Hospital was the place to go. She contacted her neurologist, who explained earlier that anything that she could help her with, not to hesitate to contact her.
Kieara got ahold of Dr. Christine Lu-Emerson
Her neurologist. She requested a consult with someone at MGH to discuss Proton Beam Radiation. Dr. Lu-Emerson knew immediately who to contact. Why not contact the chief of staff at the proton center?
Dr. Lu-Emerson had worked at MGH, either completing her fellowship or residency there. She got Kieara an appointment right away. We went to Boston, met with the fine folks there. Every was explained in detail. The only obstacle, if Kieara decided to go this route, was approval from her insurance company, which could take weeks. Kieara inquired about a third opinion from the Dana Farber Cancer Institute.
Again, Dr. Lu-Emerson connected her with the chief of staff, only a couple days after the appointment at MGH.
I must mention, Dr. Lu-Emerson had spent time at Dana Farber working with these folks too.
It's a big club, everyone knows each other, who to contact, what to say to get their patient an appointment in a very timely manner. Again, taking care of one of their own. Hey... whatever it takes as far as I'm concerned.
Dana Farbers, Dr. Patrick Wen. World renowned cancer specialist met with us. Kieara asked him about Proto Beam. He thought it a great option, however discouraged her from waiting to start that, and felt it more important to get started as soon as possible with Radiation treatment.
On our return trip, from Boston to VT., discussing options etc. Kieara decided to try and go with the proton beam radiation. It was about 7 pm. Kieara called Dr. Lu-Emerson and left her a message, telling her that she decided to go the proton route, if she could get approval, and start within a timely manner.
Reminding Dr. Lu-Emerson, that she was scheduled to start the traditional radiation within a few days in Portland. Before we got home, Dr. Lu-Emerson had returned Kieara's call, leaving a message, due to lack of cell service, that she had gotten her message, and would be on it first thing in the am.
The sequence of events happened so quickly, I can't really remember how it went, but Kieara's insurance approval, and start date at MGH Proton Center were fast tracked. Truly amazing how quickly everything fell into place. Again, I believe they were taking care of one of their own if you will? Thank you God !
I can't remember her start date in Boston, to start radiation and chemo at MGH, however remember everything happened so fast. While making plans for a place for Kieara to live in Boston for 8 weeks, a lot of friends were rolling up their sleeves as well. I can't describe the fund raising efforts etc. it's truly amazing. There's a whole host of folks responsible, many more than I'm aware of for sure. I won't attempt to mention any names, for fear of missing anyone. Again... truly amazing!
Equally, if not more important , were the kind words of support, genuine care and compassion, prayers and concern shown since day one, which continue. A truly humbling experience, as well as the restoration of my faith in humanity. There's no way that I, or my family could ever express our sincere gratitude.
Thank You, seems so inadequate to express my appreciation, but it's the only phrase that I have. So, from the depths of my heart, I "Thank You"

---------------------------
Thank you my friend,
Kieara is doing well. She has finished with all treatment. They have extended the time period for an MRI, from every 2 months, to every 3 months, to monitor any activity. Everything is good thus far! Prior to this journey, Kieara applied to the university of Connecticut's neonatal nurse practitioner program. She was accepted, and just finished the first of 2 years with a 4.0 GPA. She's currently doing clinical rotations at University of Massachusetts Hospital in Worcester Mass.
she travels from Portland Maine, where she lives.
To Worcester and does 2, 12 hour shifts. She returns to Maine, and is back to work, full time there as well. She said" I'm not letting cancer change my plan"
We are so proud of her, and I know that you are too. I felt you would like an update as to how she's doing. Kieara and I were hoping to make it to this years Boo fest... but due to her schedule, I'm not sure that we'll be out this year to meet you, and all of the fine folks who've shown their concern. You're welcome to share this info with everyone. Don, i know that you get it....
But thank you for being you !
And I hope to meet you some day. Enjoy the weekend ! Jeff
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Re: Kieara

Post by maine hunter »

What a great story, would love to meet them some day.
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Re: Kieara

Post by Hillcountry »

Outstanding!
God bless Kieara and god speed!
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Re: Kieara

Post by flightattendant100 »

OUTSTANDING!!! Would love to meet them, hope Boofest works out one day.
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Re: Kieara

Post by wabi »

An inspirational story Don!
Thanks for sharing it with us!
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Re: Kieara

Post by diesel »

Some good new God is good
God bless her and her family
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Re: Kieara

Post by amythntr »

......wow!.....a touching, emotional and heartfelt story! Thank you for sharing!

Anthony :)
In a tough situation and wonder where God is; ...the Teacher is always quiet during the test.

Anthony :D

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Re: Kieara

Post by paulaboutform »

Wow! That's such a wonderful update....and I'm getting too emotional in my old age. I'd sure love to meet Kierra and her family one day.

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Re: Kieara

Post by Gwens Dilemma »

Inspirational is all I can think of at this minute. Said it before, Don, there will be a special place in His Kingdom for you and your wife.
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Re: Kieara

Post by maple »

Dang I love all you people.
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Re: Kieara

Post by hankenhunter »

Very poignant read. Thanks Don
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Re: Kieara

Post by Doe Master »

Thank you for sharing this Don .
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Re: Kieara

Post by Tom »

Thank you for sharing Don

I too would love to meet such a wonderful young lady but would also love to meet her parents who raise such a wonderful lady. I understand the reason for not coming to meet us is a just reason.

Kieara, please gain all the knowledge you can, so you can help others fight harder to live.

Tom
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Re: Kieara

Post by Neckknife »

God be with you and your family.
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Re: Kieara

Post by agingcrossbower »

Thanks for sharing Don. What a great little fighter Kiera is. :D
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