ready or not, here we go!

I am totally feeling unprepared!  I've never been away from home for 2 months.  In college, even though I lived at the dorms, I was only a short drive away from home.  I don't know what to bring, what we will need.  At least the boys will be at home here and they can send things if we need them.  
We are still trying to finalize a place to live.  I'm hoping it will all come together today!  I'm surprised realtors weren't working on the weekend.  We've been anxiously awaiting calls that never came.  We left several messages with no response.  Very surprising!  It sounds like it is a hot market down in Jacksonville.  We will be lucky to find a nice place under $2000/month with the short notice we received.  Yeah, I know.  This is not for a house by any means!  It is a small apartment condo.  It is however, fully furnished down to the eating utensils and linens for the beds, so we will not have worry about that.  I'm not sure how they expect such a quick turn around!
Today involves last minute details, finish packing, loading the car, etc.  I also need to meet with Aly's principal to firm up some plans regarding school.  We are expecting to be down there until the last week in October!  I need to try to squeeze in a last minute meeting with Tom's counselor as well.  Too much to do!
We wanted to stay long enough for Aly to attend the middle school open house and get her picture taken so she'll be in the yearbook this year.  We will head out bright and early Tuesday morning.  We are planning to make it to Indianapolis Tuesday night, Asheville, North Carolina on Wednesday night and we need to be to Jacksonville by 2pm on Thursday.  Fun, fun!
Aly looked so cute for the big orientation day this morning!  We were greeted at the door by one of the social work staff members.  She was very kind and said she'd make sure Aly was in good hands.

as expected

Just as I expected, I write in the blog and it happens...Jacksonville called and they want us down there next week!!  I think we will be heading out on Tuesday.  Caravanning to North Carolina to drop my mom and her car off and then continue to Jacksonville.  Here comes the whirlwind of activity!  You may not see a post for awhile!!!!

Aly’s appointment, to get her stitches removed, went well yesterday.  There were a couple of areas that caused pain because they didn’t come out easily, but other than that it was smooth sailing.  He did a short check of Aly’s vision and there is a bit of improvement, but she is still lacking peripheral vision.  He was very happy that she was able to read a paragraph in a magazine.  He said sometimes with nerve damage they are unable to follow the sentences to the next line.  He is still hopeful that more of her vision will return, but it is the typical waiting game that we’ve come to know.  We also found out that Aly has a few titanium plates in her head.  I figured there had to be something holding the piece of skull they removed and put back in, but it is one of those questions us common folk don’t think to ask.  Because she has these, she doesn’t have to go through an additional process of putting fiducials in her head.  Fiducials are tiny little screws, about the size of screws put in eyeglasses that they typically use to help guide the radiation beam.  The screws can be seen on an x-ray so they can better guide the beam to the exact location.  Yes, you are all going to learn along with us!  I’ve learned more medical terms than I’ve ever wanted to know.  Aly needs to go in today for yet another MRI to help measure where the plates are exactly and help give Jacksonville more information to get things set up.   

We are waiting for the call from Jacksonville to tell us when we need to arrive down there.  By the way, we’ve had many ask what hospital Aly will be at.  To clarify, the radiation treatments are an outpatient treatment.  She will have to go in each day for about ½ hour.  The main part of that ½ hour is getting her positioned just right.  The radiation treatment itself takes about 5 minutes.  Aly will be going to Shands Hospital which is a part of the University of Florida, Jacksonville.    I’m just praying that they don’t call one day and tell us to be down there the next week!  I’ve got the feeling that is what will happen and I’m not looking forward to that mad rush!  It is not like we can go ahead and rent a place to live now and then wait for the call.  Speaking of which, if anyone knows the Jacksonville area and can give us tips on good areas to live that would be helpful.  Or if anyone knows of friends or family that have a house, condo or apartment to rent to us that would be helpful as well.  I know there are a couple of friends already working on it for us.  It is amazing that there are so many willing to help!  We received a list of possibilities from the hospital there and we have a couple of ideas that we are leaning towards, but haven’t made a final decision.  The other thing we really didn’t think through when choosing Florida is the hurricane season!  It looks as though one is going to possibly hit this week!  I guess we’ll hope for the best! 

arghh, where does the time go?

Ok, this time I had a hard time finding the time to write!  I've been trying to get things done now that Aly is at home.  Appointments, yard work, back to school shopping, planning for the birthday boys.  So much to do and little time to do it!

Aly is doing wonderfully.  Yesterday I got her out and about for a while.  We went to do a little back to school shopping for school supplies.  She is looking forward to it, although I don't know how much of the back to school part will take place.  We will be heading to Florida for the radiation treatment.  My guess and hope is that we will be getting ready in the next few weeks.  I can only hope they give us some notice.  I'm afraid that we will end up scrambling at the last minute to make travel arrangements and find a place to live down there.  As well as figuring out what to do about school!  Oh, too much to think about!

We have an appointment on Monday with the neurosurgeon's office so that Aly can get the stitches out.  She has been feeling pretty good.  She is slowly getting her energy back.  There are times when she feels tired and I know it frustrates her because she wants so much to feel normal and do normal activities.  Please continue to pray for her health and for her eyesight to come back.  Right now she said she feels like she is looking through tubes.  She can only see in front of her.  She has no peripheral vision.  I had to tell her to stop before entering a crosswalk yesterday, as she did not see a car coming.  She is hesitant when we are out and wants to hold a hand to assist in walking.  I hate the thought of her having to live with that after the drastic improvement she had during chemo.

chink in the armor

I must apologize for not posting sooner.  Thank you Gail and Jimella for the gentle reminder that people are wondering how Aly is doing. 

Call it writer’s block, call it needing a break from all things medical…I don’t know, I just haven’t felt like writing.  I’ve had a chink in my armor.  This whole thing has been too much of an emotional roller coaster and my emotions have gotten the best of me this week.  I’ve been holding it together but for some reason this week I’ve felt like I hit a brick wall.  Frustration is at an all time high; frustration with the doctors, frustration with the support staff, and frustration with the Make a Wish program.  It has all converged at once.  I won’t go into all the details other than saying, “Everyone needs to get on the same page!”

Aly is doing great, making her typical speedy recovery.  We are hoping she will be released from the hospital today or tomorrow.  It has been a struggle to get her to do the things she needs to do and I don’t blame her not wanting to do anything but sleep, but she had some goals to accomplish in order to be released, like eating and doing physical therapy and she hasn’t wanted to do either.  I know some if it is because they have her on strong pain medication when she tells them her head hurts, stuff that makes her sleepy.  We weaned her off that yesterday, cutting it down to Tylenol, and by the end of the day she was more like her normal self.  She’s still got an attitude, which again is understandable but makes things just a bit more challenging.  Her eyesight still comes and goes.  I know that is worrying her and I know the stitches on her head are making her insecure.   She had a short chat with the staff psychologist yesterday and Aly said she was frustrated as well. 

I’m hoping we’ve turned the corner.  We have been waiting to hear what the next step is.  Aly’s cancer doctor has been out on medical leave for the last two weeks and the fill ins do not know what the plan is.  That is part of the frustration I mentioned.  It is the same old story, hurry up and wait.  Even the neurosurgeon said to us, “it stinks having to have things done during the summer.”  It is vacation time for everyone but us.  Get one thing done then sit and wait for a decision to be made while all of our lives are put on hold.  It is hard seeing pictures of other peoples’ summer vacation trips.  It is hard to think about Aly missing out on summer and possibly part of the school year if radiation is next.  This is just plain hard all around!


UPDATE:  Shortly after I posted this Kevin called me to let me know everyone was on the way home...so Aly is at home today.  She is resting, tired with a headache, but she is home....

  

Already Friday

You know you've been at the hospital too often when the guy at the welcome desk sees you walk by and he has your name badge printed out before you walk up. I took the overnight shift and when I got up this morning I went down to the cafeteria. There is a welcome desk off to the side as you walk into the cafeteria. I went to get a little breakfast and on my way back I stopped at the welcome desk and asked to get a new name badge for the day (have to have the current date). He picks up one that was already printed and hands it to me. I look at and it was my name. I must've looked a little dumbfounded as he said, "I saw you walk by." Ok, well first my old name badge was covered up by my sweatshirt so he couldn't have seen my name. Second, how did he know I hadn't already gotten one or that I needed one?? Wow, that's good.
Anyways, I had to share that story.
Aly is still in intensive care, they've been wanting to move her up to the cancer floor, but there haven't been any rooms available! It sounds like they will move her this afternoon. I wish I had magic wand to make her feel better. She's not happy. She will not cooperate with the nurses or doctors. Of course it doesn't help that she usually is sleeping when they come in and want to check her out. The RN from neurosurgery was in at 8am wanting her to open her eyes so he could do some vision tests. Then he shined the bright light in her eyes. Not fun. She said she couldn't see anything in her right eye, which was different from what she said last night. Last night she said she could see me standing on the side of her bed. Her eye was less swollen last night. This morning it is quite puffy again, so hopefully that is the cause. Or maybe she just said that so he'd go away. I'm not looking forward to making her get up and walk. She needs to, but she doesn't want to!
Her bandage was taken off her head this morning. It was hard to look at all those stitches! But I will say it is quite impressive. They look evenly spaced and very neatly done. I wonder if Dr. McCue has a side job as a tailor?

cautiously rejoicing

The tests have come back on the biopsies and there is no cancer in what they removed from Aly's brain!  THANK THE LORD!  It seems the chemo did the job on the cancerous portion of the tumor and the remaining was just dead cells.  It would've been nice to have been able to figure this out without having to do this complicated surgery though!  The sample they took from her frontal lobe, the new growth area that was showing, was just blood.  They believe the other areas are the same.  They are planning to do another MRI today to see what the status is on the other areas.  It is possible that there was some bleeding that took place and that could be a result of low platelet counts after chemo.  We will have to wait and see. 

Aly is still on the mend.  Her eyes have been swollen shut for the last couple of days.  She is not a happy camper.  She has been very quiet and withdrawn.  I think there is a lot going through her little head.  I can only guess she is concerned about her eye sight.  When she came out of surgery and woke up, she could see fine out of her right eye, there was some limited vision in her left.  Yesterday, when they lifted her lids to check vision, she could not see anything out of her right eye and still limited in the left.  We are praying now that the vision is restored in both.  We won't know for a while until the swelling goes down and she is further along in the healing process.  It would be awful if she has to go back to the limited vision after the vast improvement she had.  She is also angry about having to get up out of bed when she wants to rest and she has to go through this breathing exercise to exercise her lungs to avoid pneumonia  and that makes her head hurt so she has been fighting us on that as well.   

Thank you all for your prayers!  I know they've been helping.  Please continue to pray for Aly's recovery.

tuesday

Aly is doing as well as can be expected after such an intensive surgery.  Dr. McCue, the neurosurgeon stopped by bright and early this morning.  He said he is seeing some vision loss in both eyes today from the  tests he is doing with Aly.  He is hoping it is due to swelling from the surgery and will come back as the healing process continues.  He said he had to "bang hard" on the eye nerves to remove as much tumor as possible.  Aly's right eye is swollen shut and is turning purple.  She is complaining of some jaw pain and just general head pain.  We have been told all is to be expected.  Her incision went from just above her right ear to just past the middle of her head just above the hair line.  It is amazing what procedures can be done now days!  I can't imagine ever being a doctor and being able to do something like this.  
Yesterday, we asked how long Aly will be in the hospital.  He said a typical hospital stay for this procedure is anywhere from 4 days to 2 weeks.  He said, "knowing Aly and the way she is looking already, it will be 4 days."  We'll see.  Hopefully he is correct in that, but we won't push it!  They had put IV's in both arms even though she has the IV port in her chest.  She was not happy to hear they would have to do that, but both were taken out now, so she is more comfortable.  She is sleeping/resting most of the time, but comes around and asks for drinks of water occasionally.  She is remarkable, that's all I have to say! :)    

Out of surgery

Aly came out of surgery and is doing good. The neurosurgeon removed the new growth in the frontal lobe and also removed as much as he could of her original tumor. At first glance and after initial testing neither look cancerous. It will take a couple of days to make a final determination. All of the new growths have gotten smaller since the last MRI, so we are hoping these are all good signs.
The surgeon said that the remaining original tumor was still inteferring with her eye nerves so she may have loss of vision on her left side due to removal. He is hopeful that if she does, that it may come back after healing. We will not be sure until she wakes up and he can examine her. She also has a cyst still remaining on her brain stem which they could not remove without fear of dire consequences but he said it is the same consistency of the original tumor he removed, so there is a good chance that if the original tumor is no longer cancerous this would not be cancerous either and would be treatable with the radiation. We just need to wait for results.
The other issue he confirmed was that her pituitary gland is not functional and will not be functional, meaning Aly will continue to have to monitor her diabities insipidus and she will need hormone therapies as well as thyroid medications throughout her life.

Operating

Aly went in the operating room around 9am. I went in with her and was there until they put her to sleep. In true Aly fashion she kept sticking her tongue out at me. Purely a sign of affection, I know. The gas makes her giggle and that is the best way to go to sleep! It sounds like this will be a lengthy surgery. I will update when I can.

Update3:30...still in surgery have only gotten general updates that things are going smoothly. The nurse has been calling us every couple of hours.

Saturday

This weekend we have been focusing on Aly, of course.  We have been making sure she gets to do what she wants to do as much as we can!  Yesterday, she wanted to go tubing but none of her close friends were around (that like to go tubing) to invite along, so she went with her 2nd choice.  She invited her good friend Maddie B. to join us in a visit to Dave & Busters.  They had a blast.  It is funny that they ate the same things for dinner and wanted the exact same prizes after playing games.  Gotta love those big ties!  They are so cute.  Maddie also stayed for a sleepover last night.
The other things on Aly's wish list are to vacuum out a car and to go golfing.  I know, odd choices right?  So, this morning she vacuumed Kevin's truck.  Aly loves to help, loves to be organized.  She needs to give some lessons to her big brother!  :)  The other choice she made, golfing, is still making me go, "hmmm."  Kevin, Tom and I love to golf.  I'm thinking she wants to golf because we love it so much.  She hates it.  She's always hated it.  Usually, we've had her come along, because we couldn't leave her at home alone, and she would be so bored just sitting on the golf cart.  She never wanted to golf.  She's tried it.  She has her own golf clubs.  She is really good at hitting the ball, but she just doesn't like it.  So, this is why I say, "hmmm..." I think we will go on Sunday.  It is supposed to be stormy this afternoon.  Sunday is supposed to be nice, cooler weather.
We also have to make a trip to the hospital this weekend for blood tests to get ready for Aly's surgery.  Everything has been confirmed and we are scheduled for early Monday morning.  We have to be there at 6am!  We are not sure how long the surgery will take, sounds like a long process.  I will try to post as soon as we know what is happening...Please keep the prayers flowing.

scenarios

Meeting with neurosurgeon done...They have to firm some things up, but it looks like Aly's surgery will take place on Monday!  We got a little mis-information in that this new tumor they found is on her right side and not the left, which makes things a little easier but there are several different scenarios.  All will involve surgery and they will remove the new tumor first so they can figure out exactly what they are dealing with before proceeding.  I'll go best to worst:

1.  One explanation is the one that I've mentioned, that they are looking at these new spots being an infection.  It may be a type of fungal infection which the neurosurgeon has seen before in other cancer patients.  It is more common in brain tumor patients who have gone through chemotherapy and their immune system has been compromised because of the chemo.  This would be the best case scenario as it is treatable with antibiotics.  When we asked about other symptoms of infection not showing, he said it depends on what type of fungus it is.  There are many and not all show symptoms.  When the new tumor is removed and if they find it is a fungus, the surgeon will not go any further at this point.  He will close the surgery and Aly will be treated for the infection before anything else takes place.  He said he would not want to take a chance of spreading the infection.

2.  Another explanation is that it is the germ cell tumor spreading.  If that is the case, he will remove the new tumor and go on in and also remove what is left of the original tumor.  The other areas are too deep into the brain and would be too dangerous to operate on so they would not try to remove them.  Once Aly has recovered she would continue on the path of radiation.  It sounds as if they would target these new areas of growth as well as the original spot.

3.  The last and worst scenario is that this may be a different type of cancer all together.  If this is the case it is an aggressive one.  They/we will have to make further decisions on how to handle it.

In any case, the surgeon said doing this surgery is Aly's best chance.  He said if there were any question in his mind he would not proceed in doing the surgery.  He said he will go in "with a happy heart" because he knows this is the best thing to do in this case.  They need to figure out what they are dealing with in order to know how to deal with it.

I continue to be amazed at Aly.  She takes these detours like another day at the office.  She hears the news and then comes home and wants to head right outside like it is no big deal.  I just wish something in this process would go the way it is supposed to go.  We've had so many things come up that aren't normal, that are rare, that throw us on an emotional roller coaster.  Maybe we need to follow Aly's example and go with the flow.  Take it one day at a time.  It is not easy in the adult world though!

JUST KEEP PRAYING PLEASE!
 

Further testing

Aly went to the hospital today to have a CT scan done of her whole body.  They wanted to see if it would help give them answers.  It gave some answers but not others.  The CT scan of her body, other than her head, was clear of tumors, which means the cancer has not spread anywhere else.  Her blood markers are at a normal level and as I think I mentioned last time, the spinal fluid is also clear of cancer cells.  So, this new tumor and "hot spots" are not making sense.  Typically with the type of tumor Aly has (the original one) any spreading that they see is through the spine.  They just aren't sure why they are seeing this new tumor that grew but yet the original tumor remained the same size, plus the fact that the blood markers are normal whereas they were elevated upon the original diagnosis.  The major problem is the fact that the tumors are in the brain.  If they were anywhere else they could remove them rather easily and do a biopsy to see for sure what we are dealing with.  We will be meeting with the neurosurgeon on Thursday and hopeful gain more insight and possibly come up with a plan of action.
This girl is a medical mystery.  If you see her and talk with her you wouldn't know anything was wrong other than her missing hair.  On that note, her hair and eyelashes are already starting to grow.  She is so happy about that!  She's been so much like the Aly we used to know before this journey began.  She is very chatty, silly and happy.  We took her to the Waterpark of America on Saturday.  We wanted a total break from all this medical stuff if only for one day.  It was just our family, Kevin, me, Tom and Aly.  Aly had more energy than the rest of us.  She couldn't get enough.  Why is it as you get older, you get more dizzy on rides?  I went down one tube slide and my tube spun around so I ended up going down the whole slide backwards!  That about made me sick.  It was, however, a very enjoyable day.  A lot of laughs and smiles.  Something that we all needed!  We stopped for a nice dinner as well.  Aly didn't each much.  She still is not eating a lot, but she is at least eating more food and we are not having to rely on the formula for her main calories.