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Archive for August, 2006

What’s wrong with Ana?

Monday, August 28th, 2006

The beginning of June we noticed that Ana had a very odd smile.  Not thinking much of it because what girl going on 12 wouldn’t be trying to find her own way in the world, and we thought the smile was part of her growing up.

Then about the middle of June we noticed her covering one of her eyes one evening as we were all sitting around playing our favorite at-home family pass time of Mario Party.  We asked her why she was covering her eye and she mentioned that sometimes she saw double when reading and covering one eye seemed to help.  Knowing this was no good at all we made an eye appointment the next day at Sam’s Club.  After a rather long eye exam, the eye doctor told us to go and see our regular doctor because he felt there was more going on than just poor eye sight that glasses would fix.
So Tuesday that next week we saw our regular doctor and she ordered a CAT scan after Ana failed a number of in-office tests that told her that the left side of her body wasn’t working correctly.
The CAT scan showed a mass in the brain, so we followed up with the MRI of the brain later that next week.  It showed Ana did indeed have a brain tumor and we were able to see the neurosurgeon the next day after the report came in.  There we found out that the tumor was in an inoperable region of the brain because of its placement in the Midbrain area. 

In the first days after her diagnosis we saw another eye doctor at the Duluth Clinic who performed a number of tests to find out the cause of her double vision.  Just in case the double vision wasn’t caused by the tumor pressing on her optic nerves.  We then saw another Neurologist who to this day amazes me why we needed to see him… I guess it was to get the prescription for an eye patch from the eye doctor to help with her double vision.

After a week of playing pinball between doctors in Duluth, we heard news that we really didn’t like…. it was the plan of the doctors in Duluth to watch the tumor clinically and not bother treating it at this time.  So it was time to get a second opinion.  This was something that was totally new for my wife and I.  Neither of us have had any medical issues where there was the time or need for something like that.  So we went back to our primary doctors and asked how to go about getting a second opinion.  They were more than willing to help, because they even mentioned that the area we were getting into was beyond what they’ve had to deal with in the past.

Enter Doctor Mortel and Children’s Hospital (middle of July):
Ana had been to the Twin Cities for medical help before when she was 18 months old.  More on that another time.  Anyhow, we felt much better at the thought of going to St. Paul for medical care, just because of the past experience we had.

The first visit we met with Doctor Mortel and two other doctors, a neurosurgeon and a hormone specialist.  They looked at the copy of the MRI from Duluth and agreed that she had a Midbrain Glioma, and told us to start with a steroid named Dexamethasone to see if the pressure would ease off the area giving her the droopy eyelids and double vision. After two other trips down to visit with the staff at the clinic, Dr. Mortel decided to heck with waiting to start chemo, we would go ahead and start it now as Ana’s quality of life was rather low, with the now constant double vision and lack of spirit she had just a month earlier.

So we started chemo therapy Aug. 11th and had a new MRI the next day.  To make chemo & lab work easier we had a port catheter installed in her chest to prevent the over use of the veins in her arms. After surgery, which was later in the day, she wanted to eat badly. She had to wait because there were three of these ports being put in that day and one was in an infant. Even though she didn’t like waiting she fully understood that the baby was in need of being done first. After recovery she smelled popcorn being made down the hall, she said, “Oh! That smell is beautiful!” And then snapped at us when we told her that she had to wait till the doctors said it was OK to eat. Later that evening she flew though the chemo without an issue.

Saturday morning she had a new MRI done, and the new diagnosis…
Timing is everything, the weekend we started chemo just happened to be Dr. Mortel’s weekend on call.  So he was able to read the MRI and then report to us and let us know the results. He enters the hospital room and says, “Now this makes perfect sense!” Of course were wondering what!!!  And he went on to tell us that it wasn’t just a midbrain tumor but a brain stem tumor. We had a bit of a shock after that. I think I still haven’t fully recovered from the shock of hearing that. A brain stem tumor!  Now, I’ve only been reading on the internet for the last month and a half on this stuff, and thanking the stars that it was not a brain stem tumor, and here we are now having to deal with one.  I was waiting to hear about how much time we didn’t have now with her and that news didn’t come.  When asked about the new issues with this news he happily reported that the chemo protocol wouldn’t change and he believes that we shouldn’t need to change the plan for treatment.

So where are we now?
Currently in-between chemo treatments, watching blood counts, and waiting for the next MRI which won’t be until nearly the beginning of October.  We have been asked to do a fatigue study and we have other lab work, hearing tests, growth tests and lastly, wean her off the Dexamethasone.  We have a new doctor’s appointment 8/29 and the next chemo is tentatively set for 09/08.

Brain Tumor: Brain Stem Glioma

Monday, August 28th, 2006

This is a direct link to a page at the St. Jude’s website which gives some really good overview infomation of what we are dealing with.

http://www.stjude.org/brain-tumors/0,2577,466_2184_5033,00.html

This is just one of many site’s I’ve found that has infomation worth reading to help raise awareness.

Ideas and what we have tried…

Monday, August 28th, 2006

Many have asked where are we with _______. fill in the blank

Health Insurance – Currently don’t have any, I’m self-employed and my wife’s Insurance only covers her, monthly premiums just seemed to high before this came along.  Since she’s been very healthily for the last 10 years.

St. Jude’s – they specialize in this type of thing however I contacted them June 29th, by phone and email and I have yet to hear back from them.  From what we know she would be a perfect for an open study they have. It’s also a 17+ hour drive from Duluth/Hermantown to Memphis, TN. We also have come to enjoy the level of care at Children’s hospital in St. Paul.

Medical Assistance – This a county government Insurance plan for mostly low income peoples… We do make more than is allowed for this program however they do have a “spend down” program which would qualify us for some help.  The exact amount if we’re accepted is unknown, the initial numbers looked like maybe a “deductible” that would change between $1,000.00 a month to $2,500.00 a month, based on some funny government math, we would still be responsible for.

SSI (Social Security Disability) – On a great tip we got from some one we went and filled out the paper work to see if she would qualify and be accepted for this program. We meet with them on Aug. 15th. and it can take around 4 months before we hear anything on this program.  This would be an important thing for us as it would give us an Insurance plan that would cover her and most of her ongoing needs until she is healed.Â

Duluth has a Gamma/Cyber Knife – Yes it does and someday if the tumor is still around or comes back when she’s much older this will be an excellent technology to use.  At this point in her life and development any type of radiation would be harmful to her. Causing learning disabilities and other side effects we’re not willing to consider this at the moment. This also covers any other radiation type treatment.

At this point we are willing to look into just about any option for ideas people may have… Please feel free to email them or post your comments (once registered).  I’ll list those ideas here and give updates as they come up.