typical doctor day...

First things first...The MRI was CLEAR!  Yes!  Now we can wait 6 months until the next one!  Hooray!

Now, it is 5:15pm and we are just now getting home.  We left the house at 9:50am!  Yes, long day.  I just said to Aly, "I get more exhausted just sitting waiting at the appointments than I do going to work!"  I feel worse for Aly.  This was a crappy day as far as MRI's go...It was a very reflective kind of day as this clinic is where Aly's first MRI (when they found the tumor) was.  Other than the fact that we had awesome results today, it was similar in all other respects...rough going.

We leave the house on time, get to the MRI on time only to have issues.  I'm not sure why they say, "arrive at 10:30 for 11:00 MRI."  We were there at 10:30, checked in, brought back to the MRI waiting area and the nurse says, "you have about 20 minutes to wait."  So, 5 minutes, before the 20 minutes are up, a nurse comes in and says they need to do a urine sample and start an IV as they need to draw blood for lab work and it is also needed for contrast during the MRI.  The IV is where it started to go downhill fast...on a toboggan fast.  If I were in a court room, I would swear on a bible that this nurse had never stuck a needle in anyone before.  She first goes to the typical spot, crease of the arm.  She sticks the needle in, VERY slowly mind you, and nothing comes out.  She pulls it part way out, pushes back in, repeats this several times while Aly is squirming and squeezing her little monkey friend so hard  if he were alive, he would've been strangled.  Finally, she says, "yep, this isn't working."  I wanted to say, "what was your first clue?"  So then she proceeds down the arm towards Aly's wrist.  She tries again in this area.  It was painful going in.  Aly started crying.  Again with the in move around, pull back out a little and nothing.  Aly is in tears, squeezing her monkey even harder.  I wanted to squeeze this woman's neck...still no blood coming out of the arm.  So she starts tapping her fingers right above the needle, to which Aly is saying, "it hurts, it hurts."  Another nurse came in and asked if this nurse needed help.  Why ask?  Why not just help?  The torturer says, "no, it is just going really slow..."  I said, "can we try something else?  It should not be this painful, it never has been painful."  It took, literally, 10 minutes for them to get enough blood for the lab.  I truly am not joking.  So, instead of the 11 am start time, it was 11:30.  With Aly's MRI's, they scan the brain and spine, so it is typically an hour and a half process.  Today, it took 2 hours.  I, of course, was worried.  Nobody thinks about giving any updates or letting you know why it is taking so long.  At exactly the 2 hour mark, Aly and the tech walk in the room.  It is now 1:30 and we are supposed to be in Minneapolis to see the doctor at 2pm.  The MRI was in Minnetonka!  I was planning that we would have about 1 1/2 hour down time in between IF they kept to schedule.  So much for that idea!  I'm not exactly sure why I worried about getting there on time.  We drove through McDonald's, ate in the car and arrived at Children's at 2pm on the dot.  Aly's name was not called until 2:20, at which point we were escorted back to the room and sat and waited until 3pm.  Seeing Dr. Bendel is worth the wait, but that wait time just seems so very long.  Dr. Bendel is very thorough, very nice, very helpful.  I came loaded with questions that pile up during the months in between visits.  I got lots of information today of which now I have to do more research, more appointments, etc., but at least I feel like I have a starting point for some things.
Aly's labs were pretty normal.  Her white blood counts were a bit low.  Typically this means your body is fighting something.  Aly has had a cold on an off for the past couple of months.  Dr. Bendel said it may just be that her immune system is still recovering from treatment and that she has to be exposed, once again, to illnesses in order for the immune system to "catch up" and get stronger.
We also met a social worker, who we were directed to, for some other questions.  I told Dr. Bendel that we've been at a loss, for many questions, that have come up post treatment.  Things like physical therapy, hair issues, psycho-therapy and so much more.  I told her I don't ever know who to ask and we've felt like we've been walking in circles.  She was helpful and said anytime we have an issue and don't know who to contact, call her and she will help us find an answer.  She said she could work with the school, work to help find answers...why weren't we told this before?  It seems to me if you personally don't ask questions, the answers aren't offered.  It is like the person who complains loudest gets what they want.  I think that the health care system could really use guides for people who are going through a life crisis such as cancer.  It would save money on both ends.
I also told Dr. Bendel that we happened to meet a stylist, who lives near us, who works with people who have hair loss due to health issues.  The stylist told us that they have been trying, for years, to get their information into hospitals, but the hospitals have not allowed them to do that because the hospitals think they are just trying to make money.  In actuality this salon wants to help people.  The stylist told us about a shampoo that helps hair grow faster.  She is going to visit us, again, and bring some clip in hair extensions for Aly to try and a sample of the shampoo.  But, wouldn't it be nice to be given this information during or soon after treatment?  Do they not know how much patients (especially girls) could benefit from things such as this?  As I've said before, it just seems like, ok, you're done with treatment and you are cancer free, we are done with our job so you are on your own now....what about the after affects?  So many little things would greatly improve a patient's experience....
We are now on the path of finding an occupational therapist to help with Aly's weakness and dexterity issues.  We are also looking for counseling.  I'm on the right track for that, but have been waiting for our insurance deductible to be met, otherwise it is 100% out of pocket for each visit.  It's like a bad Christmas present every year as our insurance renews on December 1st, meaning the out of pocket deductible starts over.  Today's visit, between the MRI and the clinic, will probably take us over the deductible in one swoop.  Then we get to start saving until next December...Amazing....
Sorry, I'm getting long winded!  Too much time to think today!  Thanks for tuning in and thank you for the prayers and positive thoughts today!