Doctors

I've come to realize that doctors don't know any more than the average person.  With their schooling and training, they may be better at investigation and ruling things out, but from what I see they are in the same boat we are.  They don't really know.
I am so frustrated with the lack of availability of doctors and them not showing any concern.  We sit and wait for lab results and a possible solution for a few days here, a week there and are no closer to solving a problem.
For 3 weeks now, Aly has been on the growth hormones.  For 3 weeks now, Aly has been having to get up, during the night, and (sorry for the lack of a better term) has had to pee 3 or 4 times a night.  She is back to where she was before we figured out she had the brain tumor.  The medication that is supposed to control this is not working like it was before.  I can only assume it is the growth hormones throwing her system off.  Everything was going great until then.  Yet, the Endocrine doctor wants to run labs to rule things out.  So, she sends (via regular snail mail mind you) lab orders to our family clinic so we don't have to drive cross country for a blood draw.  Me, being the efficient, gotta get things done now type, gets Aly into the clinic the day after I receive the orders.  The clinic says they will fax the doctor the results that same afternoon.  No call that day.  No call the next day, so I call the doctor's office only to find out she is off for 5 days.  I talk with the nurse and she says that the other doctors will probably not be able to help because they don't know Aly's history so I should wait until the dr. comes back.  GRRR...in the meantime Aly is not getting sleep at night, is tired all the time (wonder why??)  and is in the bathroom constantly.  I was waiting to see if I could adjust her med. dosage to see if that helped at all.  Well, I went ahead and adjusted it anyways.  Imagine my lack of surprise when the increase in dosage helped!  It still isn't completely solving the problem, but it decreased her nightly bathroom visits from 3 or 4 to 1 or 2.
Finally, Tuesday rolled around and the apologetic doctor calls.  Aly's sodium level was fine.  With Aly's diabetes insipidus it can be dangerous for her to pee too much or not enough.  If her sodium levels swing too much she could have headaches, even seizures.  So, that is what they were checking.  Even with the increased dosage there were no issues there.  But, now that doesn't really solve the issue.  I talk with her and ask what can be done.  Of course, she wants to rule out everything else, so more labs were ordered to check Aly's thyroid, hormone levels, and to make sure there is no bladder infection, etc.  So, back to the lab we go, yesterday.  Now, I'm waiting for another phone call.  GRRR...
When Aly started the growth hormones we were told they may affect her medication, but she said it is typically affects people so they don't need as much medication.  So, par for the course, Aly is the exception once again!  The dr. didn't give any concrete answers.
I hate this.  I hate the way it has affected Aly.  I hate that she is tired, not getting sleep, not feeling as good as she was 3 weeks ago.  The growth hormone was supposed to "give her a better sense of well-being."  She seems to be getting the opposite.  I hate being helpless and not being able to do something to help her.  I hate that she has to go through ANY of this.
On another side, I just read an article in CURE magazine (cancer magazine) about how ALL cancer patients should go through rehabilitation therapy to help them deal with fatigue, strength, etc.  and I sit and wonder why nothing like that was offered for Aly.  We had to pursue such things related to her vision loss.  I had been thinking, prior to reading this article, that it seemed so weird that there isn't any follow up care after all these treatments and seeing how weak Aly was and thinking why isn't more done?  It is like they did everything they could to cure the cancer so their work is done.  A check up and MRI every 3 months and that is it.  Nothing to help her get back to where she was before the diagnosis.  Aly is still weak, still tired a lot and I sit here and wonder why.  How long should chemo and radiation affect a person?  Is it still from that or is it due to all the hormonal drugs she's taking.  Is she not getting enough of what she needs?  I guess I have more questions to ask.  Then it is back to more appointments, more poking, waiting, missing work and Aly missing fun time.  Which is worse?

I just don't know....  

When it rains, it pours, literally!

I'm sorry to be so neglectful with my blog.  We have been busy, for what seems like every minute of every day lately.  I'm pretty sure I've mentioned that my baby boy is graduating from high school, tomorrow as a matter of fact!  In the midst of party planning, our sump pump decided to give out, during the recent heavy rains, and our basement flooded.  Not what we needed at this moment in time!  We had (the operative word here is had) a finished basement and Tom's room was down there.  Now, Tom has been displaced to our pink guest room (used to be Aly's room) and all the furniture, that was in the basement, is now in our garage where we were planning to host the party!  Our carpet is gone.  Part of the wall would not dry so they had to take that apart.  There are no businesses that install carpet quickly, unless you buy really cheap carpet.  We will be moving furniture a few times I guess!  The hardest part is losing some precious mementos that we had.  Tom had some autographed memorabilia that fell off his wall while they had the blowers going to dry out the walls.  I had a photo book from a trip we took to D.C. that was damaged.  That kind of stuff is difficult to replace and is hard to lose.  

Our lives have consisted of meeting repairmen, shopping for party supplies, trying to repair our yard after the pool installation (not easy when it was raining everyday!),  trying to organize and get ride of things that came out of the basement storage, doing paperwork for college entrance, etc., etc., etc.!  Let the fun times continue!  Also, due to the heavy rains, the pool company needs to come out and fix the pool feet that have sunk down into the fabulous clay soil, that we love.  To do this, they will need to come out, drain the pool, move it, regrade underneath, reset the pool and we will have to refill it!  Oh, joy!  "An easy fix" according to the installer!  Can you tell our stress levels are maxed??

Aly started her growth hormone therapy in the midst of all this too.  It consists of a shot, before bed, every night.  She has been doing it all by herself.  They came out to show her how to do it and that night she started.  The first time, we could see the apprehension on her face and she actually held her breath while inserting the needle.  She finally breathed a sigh of relief when she completed it.  She is a brave soul!    The system Aly has is great.  It is a little pen that holds a cartridge with multiple doses.  She has to change the needle everyday, but it is very slick and easy to do.  It is the smallest needle I've ever seen and Aly said it just feels like a little pinch.  I'm relived for her, but still sad that she has to go through this hassle. 

 

That's all for now!  I have to get back to party preparations!  

Busy Week

Aly has had a busy week...starting with last Saturday.  I've been meaning to get on here sooner, but we've been busy working on our yard, enjoying Mother's Day and many evening activities!
Last Saturday, Aly swam in her first swim meet since completing her cancer treatments.  She was so excited.  She did pretty well.  She swam in a 100 freestyle relay, 50 freestyle, 50 backstroke and 50 breast stroke.  Unfortunately, in every race, except the breast stroke, her jaw locked up
during each race.  She was able to continue and finish her races, but it definitely affected her times.  There was also some confusion, by the workers near the starting blocks.    In her 2nd race, Aly almost missed her heat because she was told to wait.  In the next race, they told her to go at the wrong time, so Aly ended up in the wrong heat with 13 year olds.  At least she got some experience in and I think she was happy to be back in the races.  I wish we could figure out this jaw lock thing.  It is so frustrating!
Mother's Day was awesome.  The kids and Kevin brought me gifts while I was still in bed.  Aly had planted some flower seeds at school.  She made me a card.  On the front it had a picture of the
earth with crying eyes.  It said, "Earth without moms."  On the inside it said, "Earth needs moms.  We need moms.  You are the best mom ever."  She also treated me to the wonderful driveway art.  Very cute!  Tom bought me a sweatshirt from Fox Hollow Golf Club, where he works.  He also gave me a great card.  It had a picture on the front of a mom squirrel and a little squirrel in a tree house and the little squirrel had acorns all over the "floor".  The mom squirrel says, "Look at this room! No wonder you can never find anything in here!"  Inside it said, "Happy Mother's Day, from your nutty son."  What is he going to do without me nagging him next year??  Kevin bought me a pool float so I can relax in Aly's pool.
 
Aly had a band concert tonight.  The band did very well.  It was Aly's first of the year.  There was one earlier in the year, but it happened to fall on the same night as senior night for Tom's hockey team.  Aly graciously gave her concert up so we could attend the one and only senior night.
Anyways, once again, during her special activities, her jaw locked up on her.  It hasn't been happening, at all, while playing her flute.  Of course, on the one special occasion...BOOO!  I'm beginning to wonder if it has something to do with nervousness or maybe clenching her jaw??  I don't know.  I just feel sad that it happens at these important events and not at other times.  I sometimes think we should pursue some treatments, but I hate to subject her to something if there is no guarantee it will help.
On another note, we are waiting for all the ducks to be put in a row so she can start her growth hormones.  It has been approved by our insurance (yeah!), but now we have to wait for them to contact the manufacturer who, I guess, sends out a representative/nurse to show us how to administer it.  Everything takes so much time and as usual, it is hurry up and wait.  Aly is excited to start, but not excited to have to get a shot every day.  We were told it is some kind of pen that has several doses in a cartridge, so at least it will not be the hassle of filling a needle out of a bottle.  I believe it will be something like an EpiPen???  Hopefully it won't hurt!  I think the benefits will outweigh the needle.  The endocrine doctor said it will help her with lean muscle mass, so she will be able to get back in good physical shape.  She will obviously start growing upwards, and the dr. said it helps give more of a general sense of well being.

Other than that, we have already been enjoying the pool.  We all got in it on Mother's Day, and had some special family time.  It was truly a lovely day with just the 4 of us!  

Make A Wish...

Well,  after almost a year of talks and negotiations, Aly's wish for a pool has become a reality.
On Sunday, between rains, our Make a Wish representatives came out to see the completed project (their job is done, but the rain has impeded our yard repairs!).  They had a little celebration for Aly.  We invited the neighborhood over and had some cake, games and a visit from the fire department who gave the neighborhood kids a ride around the block in the fire truck.  AWESOME!  Thank you Make A Wish!  Now all we need is some warm weather!  Temperatures in the 60's is not exactly swimming weather...

May Day

Happy May Day!  Just a reminder, May is Brain Cancer Awareness month, along with MN fishing opener, Mother's Day month, etc... We purchased some t-shirts for brain cancer awareness and Aly chose to get one that says, "brain cancer survivor."  Aly is doing great.  She continues to progress back to the Aly we used to know.  Our neighbors have been saying how great it is to see Aly back running around the neighborhood with her friends. Aly is going full force during swim team practices and is now making it through the full practices.  She is planning to attend her first swim meet next weekend!
As you can see by the pics, the pool is just about complete.  A couple of city workers (one was a fireman) came out and hooked up a fire hose to the hydrant, nearby, to complete the fill.  We had our hose in there and it ran from early morning until 7pm.  It didn't even fill it half way!  After these pics, they came out and installed fencing that goes along the top of the pool that will meet city code until we can tackle putting a deck up around the pool.  Of course, now that the pool is usable, the weather is miserable.  It is supposed to rain most of this week!  BOO...
I don't think I posted since the MRI, but Aly is happy that she could discontinue on of the meds she was taking.  It was phosphorus.  They were 2 huge pills, twice a day, so she is thrilled.  She is currently down to taking 3 medications a day.  Aly's cancer doctor gave us the go ahead to start the growth hormones, so we have to talk with the Endocrine doctor to see when we can start that.  Aly really wants to get growing!   Even if it means a shot everyday.  I wish there was some other way they could administer those!  It sounds like she will have to do these for a VERY long time.  When she gets a little older she will also have to start on estrogen replacements as well.  This will be interesting.  I just hope it goes smoothly.
Knock on wood...she hasn't had any of her facial spasms for a long time now.  She is still having her jaw lock up but that too is still decreasing.  YEAH!  The doctor said we may never know what really caused them, but as long as they go away we are ok with that.
That's what's happening here...

Yippee!

MRI was clear!  No issues!

Time for an MRI

Aly is scheduled for an MRI tomorrow.  Please include her in your prayers today and tomorrow that the MRI will, once again, be clear.

Knock on wood...things have been good.  The spring/summer season for the swim team has started and Aly is back swimming.  She's almost making it through the whole practice and seems to make it a little longer each time.  It is an unbelievable turn around from just a few short months ago.  We have also been amazed at how well she's been eating.  I can't explain what an amazing difference we've seen.  Aly has caught Kevin and I, a few times, looking at each other, smiling, shaking our heads at the dinner table.  She'll say, "What?"  It is just awesome to see her interested in food again.  She's gotten to the point where she is trying new things and now likes many things she didn't ever like before.  She also makes suggestions on what to fix for dinner or where to go if we are eating out.  I just can't get over this "new" Aly.  She has also started golfing with us.  She decided she wanted to try golfing, not only because the rest of her family plays, but because her physical activities are limited due to her vision constraints.   We all went to play 9 holes yesterday afternoon and I think the rest of us will have some strong competition in a couple of years.  Aly hit the ball really well!  She's decided she likes golf!  Yeah!  She asked for some golf lessons for her birthday, believe it or not, so that is on her docket as well.

Her facial episodes are still happening occasionally, but seem to be slowly decreasing in frequency.  I have to knock on wood again, because every time I say that, they seem to increase again.  I asked her, at breakfast time, the other day if she's had any jaw locks lately because she hadn't mentioned any for a few days.  Her answer was, "no, I haven't."  Well, just a few minutes later she had one while eating.  Kevin called me a jinx!

Aly has been mentioning, for weeks, that she wants to go visit her teachers at Big Woods.  It is hard because their school hours start and finish before the Middle School.  She likes her sleep, so it is also difficult to get her out of bed earlier in the morning too!  We decided that tomorrow would be a good day.  We thought we'd head that way before we go to Minneapolis for her appointments.

Other than that, we are still waiting on the pool install.  It was supposed to happen last week, but the rain had delayed things.  They are now telling us Thursday of this week (of course it is supposed to rain Wednesday), we'll see!  We need the warm weather back, again, so we can enjoy it once it is in.