At a loss

As some of you may have figured out, knowing we were anxious for the MRI results yesterday, and seeing I hadn't posted anything yet, we did not receive good news yesterday.  In fact we received horrible news.
I had such a good feeling yesterday morning before the MRI.  When I woke up, the first thing that I heard in my head was, "the MRI is clear."  It was like someone talked to me and said that.  Honestly that, for me, was a sign that good things were to come.
It is with pure sadness that I share with you that not only is Aly's tumor not gone, but they found another tumor that has grown and a couple of other "hot spots" that are showing activity.  We obviously were not expecting anything like this.  Her tumor was responding so well to the chemo.  How is it possible for these to come about so quickly?  The last MRI was just 2 months ago.  Being in total shock, we could not think of questions to ask, things to do, we just wanted to escape and take Aly out of there.  Aly was able to come home yesterday.
I don't know what to say...I have never cried as much as I did yesterday.  When the RN came into Aly's room and asked Kevin and I to come talk with her and we left Aly there wondering it was awful.  It was the most horrible thing to have to listen to the RN tell Aly the news and Aly knowing that we'd been crying.  It is so not fair.  This sweet little soul started out her life in a tough situation.  She spent about 3 months in a Russian hospital with a skull fracture only to move on to an orphanage for another 12 months.  We brought her home when she was 18 months old.  For this to be happening now, I don't understand it.  She's been through so much already.  I don't know where our path will be leading next.  Our main doctor was out of town at a seminar yesterday.  We were unable to talk with her.  We are hoping to hear from her today.  They are regrouping and figuring out the next step.  It is not going to be easy.  I don't know that they know what the next step will be.  Because there is new growth they are not optimistic that further rounds of chemo will be helpful.  Because there is more than one area of growth they are not optimistic about surgery.
The new tumor is in her frontal lobe.  They are saying it could affect her behavior.  It could also cause seizures.  They have started her on a medicine to help prevent seizures.  I am so scared for this little girl and scared that I will not have the strength or knowledge to help her.  I can't stop the tears from flowing, but I know they need to stop flowing.  We need to focus on the fight.  Please continue to pray for Aly.  Please pray for the doctors to find the knowledge and best plan for Aly.  Please pray for our family to have the strength and courage to continue this battle.        

just when we thought...

Ok, I post about the visit to the E.R. we made last month only to be woken up at 2:30 am.  Aly had a fever.  I checked it twice.  101.8, then 102.  So, of course that means a call to the answering service and a call back from the doctor on call.  Of course it also means a trip to Minneapolis to have Aly checked out.  Even though it is the 3rd time with the same stomach pain and same fever.  Of course we get to the E.R. and sit and wait.  We did get checked in right away although the guy couldn't find Aly in the computer and asked if we'd ever been there before!  I'm sure he was spelling our great Finnish last name wrong even after I spelled it for him twice, very slowly!  We got there about 3:30 am.  We waited and waited for a Dr. again.  By the time they admitted her and got her to the cancer floor it was 7 am.  She is doing fine.  Just tired like we all are and the pain is bothering her.

There have been so many days through this process where I just want to have the power to make this all go away.  I really did not want to get out of bed today.  I was tired and lazy and just was in a funk.  Then I start thinking about how hard this has been on Aly and how she must feel every day.  There are so many unknowns.  Some of the unknowns will be answered on Friday, but others will not be answered...maybe some questions will never be answered.  I would not wish any of this on my worst enemy.  Not that I feel like I have any enemies, but if I did I wouldn't.
Yesterday, was a long day.  I left the house at 7 am so I could get some work in before taking Aly to the clinic.  Our clinic appointment was 1:30 pm.  Aly and I sat in the lobby waiting and waiting.  I overheard one of the ladies at the check in desk say to another lady that all the rooms were full and they didn't know what they were going to do with the people waiting.  This clinic has about 20 rooms!  It is sad to think about all of the children fighting diseases!  This is a hematology/oncology clinic only.
So, 2 pm rolls around and finally some families leave and we are ushered into an exam room.  Shortly after, the nurse draws Aly's blood to check her blood counts and sends them to the lab.  Then we wait on the RN that works with Aly.  She is the one that scheduled this appointment at 1:30 because it was convenient for her.  She comes in around 2:30 pm and says, Aly needs a blood transfusion and a platelet transfusion.  We are moved to a transfusion room and have to wait again for the blood and platelets to be ordered.  Around 3:30 the process starts.  It took one hour for the platelets to run then another 2 hours for the blood to run.  We didn't leave the clinic until 6:30 pm.  These days are ungodly long and frustrating!  Aly and I spent the hours playing Sorry.  I really hate that game!  Aly was determined to keep playing until she beat me.  I tried to lose.  I kept giving her tips on how to move her pieces.  Gave her strategies, kept saying, "are you sure you want to move that one?"  Believe me, she beats me in the game of Trouble ruthlessly, so I'm not too concerned about these losses!  She is a competitor through and through.  I think that is what makes her such a fighter through this cancer.  We had some good laughs and she was in good spirits.
Today, not so good.  Her stomach is bothering her.  Much like it did after the last round of chemo.  Much like when we ended up going to the E.R.  She had a bit of a fever earlier in the day, but it seems to be gone now.  They started her on an antibiotic yesterday, so I'm hoping that the medicine will kick in soon as it did last time and she will have a better day tomorrow.  I was surprised that the transfusions didn't give her a boost as it usually does.  Her counts were really low though.  Her hemoglobin was at 6.5.  Normal is 10 or higher.
Now, we all anxiously wait for Friday.  This week is dragging like no other.  The radiology dept. called today to see if we wanted to reschedule because the eye googles that kids can use to watch a movie while they are in the MRI machine was broken.  Uh, NO! we do not want to reschedule!  I'm sure they had no idea what we are waiting for on this one, but I was about to panic.  I ran it by Aly and she told me she wanted to sleep anyways so she didn't care about the movie thing.  Good!  

Sunny Sunday

Wow, it was a gorgeous day here in Minnesota!  Finally not too hot, and not raining!
Aly is doing great!  I feel like I may jinx her...but she hasn't vomited since we left the hospital!  Very unusual, but again, we'll take it!  She has spent the weekend playing with friends.  We visited with Grandma Elma and Grandpa Al along the way to Princeton to watch Tom play some hockey on Saturday afternoon.  Today she spent the day playing with friends.  
 We have an appointment with the Make a Wish people Monday evening. Tuesday brings a check in at the doctor, to see where her blood counts are at.  I don't think there is much going on on Wednesday and Thursday...then it is MRI day on Friday.  Please keep those prayers going that there will be no tumor left.
 

Doing the happy dance~

Aly made it home today.  After doing a simple thing like checking her weight, they figured out that she was severely dehydrated yesterday.  She did look dehydrated, but not terribly.  Her weight has been hanging around 55 lbs through this whole ordeal.  Yesterday, it was at 51 lbs!  They gave her IV fluids through the night and she was doing great this morning.  Still dehydrated.  We have to keep her drinking fluids, but other than that we are SO excited that she is done with that nasty, nasty stuff.  Now, we have to nervously wait until next Friday for the MRI and find out what the next step will be.

Well Done Aly! 

Aly and Linda, RN

Ditto

This will be quick...Ditto on yesterday's post...sodium levels still not under control.  Headache all day, vomitting, dizziness, therefore another night at the hospital. Aly's body keeps them guessing!

Tuesday

Well, until 5:30pm rolled around we thought Aly had one foot out the door of the hospital.  Around 3pm, the cancer RN visited and she was very positive about Aly going home.  Around 5pm Aly developed a bad headache.  The second of the day.  It once again had to do with her sodium levels.  They had taken her off the IV drip that controls her diabetes insipidus.  All day her sodium levels were all over the place.  It started off too low in the morning, by the end of the day it was too high.  They did not want to send us home until they had 12 hours of consistent sodium levels.  So, hopefully tomorrow.

Her MRI will take place next Friday the 29th.  Please keep praying for the tumor to be gone!

Japanese Tradition

I went to pick up a package from the post office today, that we missed delivery on on Saturday.  It is from a wonderful Japanese family who used to be our neighbors when we lived in Japan.  I am in tears after seeing what was inside.  In the Japanese culture it is a tradition to make 1000 origami cranes when you wish for something important to come true.  Well, in the box for Aly today, was 1000 origami cranes, made one by one and connected together (see pictures below).  It is a wish for Aly to be well again.  I am so deeply touched.  I can't stop the tears as I think about the time spent making these delicate little birds.  Thank you Watanabes for the incredible gift and wish for Aly.  I'm looking forward to bringing the gift to hospital, this afternoon, to show her.  It is amazing!

Sunday already!

Once again, I apologize for the delay in updating.  I stayed overnight at the hospital last night.  It is hard to type out a post on an ipod!  Aly's blog site is also blocked by the hospital.  I have a special code to get in it, but it was not working today for some reason.
I am home now.  Grandma Jan is staying with Aly tonight so Kevin and I can work tomorrow.  Kevin has a meeting he can't miss and I have payroll to process by 9 am! :)
Anyways, you aren't reading to know what we are up to.  This round is going good for Aly.  She had a bit of a bump yesterday.  The main reason they do this 5 day session in the intensive care unit is so they can use an i.v. drip of the DDAVP medicine that controls her urine output.  They can be more precise on the doses vs. the oral pill she takes at home.  These chemo chemicals in the 5 day session are very hard on the bladder, so they have to keep pumping in the fluids so the chemicals don't sit in the bladder too long.  It is a tricky balance of keeping her sodium levels even.  When she goes too much her sodium levels go high which causes very bad headaches and could cause seizures.  When she doesn't go enough, her sodium levels drop which make her very tired.  Yesterday her sodium level spiked high at one point and she had an extreme headache which caused some vomiting, similar to a migraine.  They gave her a dose of morphine and increased the DDAVP.  After she slept for awhile she was doing much better.
Now that they have figured out the best course of action, her sodium levels have stayed even and she hasn't had any other issues.  She had a very good night of sleep and slept until 9am this morning.  She had a great day today and was feeling really good.  No vomiting which is a little unusual for this point, but we'll take what we can get!  Aly and I spent the morning and early afternoon together.  We found an Old Maid card game in the game cupboard at the hospital so we had a fun time with that.  We found it to be a little boring with just the two of us, so after a couple of games we included her monkey, "Tiny" in the game.  She thought that was hilarious and she was laughing up a storm when she kept picking the old maid from Tiny's hand.  We also took some walks.  One around the floor during which we talked about this being her last chemo round.  We have to drag the i.v. pumps along during these walks and she was complaining about that.  I mentioned that hopefully this will be the last time she'll have to be connected to all that and she said, "oh yeah, I forgot about that."  Then she got a big smile on her face. During the other walk, we left the floor to go on a hunt for something that sounded good to eat.  That was the major battle today.  She didn't want to eat anything.  (Yesterday she couldn't get enough.  They had given her a steroid medication to help protect her bladder as well, and that made her really hungry.)  Today was a different story.  We took a walk to the gift store where she found some sour skittles.  Then we proceeded to the cafeteria where she decided on some plain vanilla yogurt.  After eating a little of the yogurt she decided it didn't taste good.  Nothing tastes good to her except sour things.  We also watched a movie and she let me watch a little of the British Open Golf and then we watched part of the U.S. soccer team playing in the world cup.  It is too bad the U.S. lost, they should've won!  That was a good game.  Although, I am happy for Japan.  Our family has many Japanese friends after living in Japan for a couple of years and it should be a big lift after the tough year Japan has had.  At one point during the soccer game Aly told me she felt like she had taken some Benadryl and shortly after she fell asleep for a while.  She woke up when Kevin and Grandma Jan came.  She was still feeling tired when Kevin and I left, so I'm guessing that chemo is kicking in and the next couple of days may be a little more difficult.
  

praying for a miracle

Well, we are all set to start the last round of chemo.  I'm trying to think of something special to do to celebrate this being the last round.  If anyone has any suggestions let me know!  We also wanted to celebrate the fact that Aly said she was hungry today!  I can't remember the last time I heard that!  She had cereal and raspberries for breakfast.  A whole apple with carmel dip, popcorn and a little bit of ham for lunch and buttered spaghetti noodles with garlic toast for dinner!  I'm giddy about that!  Of course the roller coaster will be going down the big hill tomorrow and it will be back to not eating and vomiting again!  Gotta celebrate accomplishments while we can!

We met with the neurosurgeon today.  He was a nice, quiet, humble man.  He told us he could tell just in the short time he spoke with Aly that she is very mature for her age and very smart.  I like him already if he could tell that in the few minutes he spent with her.  It is, of course, true.  However, I don't like that he was pretty confident that the surgery will be necessary.  He was looking at the MRI results they did before the last session of chemo.  He feels what remains of the tumor is a different texture (he called it fatty) and typically doesn't respond as well to chemo.  I'm hoping he is wrong there.  When we first found out about this tumor the doctor said it seemed to be a mix of cells, some more liquid.  How they tell by just looking at the scans I don't know, but I do know I'm going to be praying extra hard for the tumor to be nonexistent after this last round of chemo.  The surgery sounds scary and because of the location has a lot of risks involved.  Not to mention it would increase treatment time as he said Aly would need 2-4 weeks recovery time before the radiation process would begin.  I just want Aly to be able to move on with her life and get back to normal activities!  Please pray for a miracle.  Please keep Aly in your thoughts and prayers this weekend.  Five days to go!
 

going smoothly

We had a lot of fun at the meet raffle last Saturday.  We won a couple of meat packs.  One had a beef roast and a pork roast in it and the other had country ribs.  We put the beef roast in the crock pot on Monday with veggies...mmmm...very good!  The raffles are a lot of fun, I had never been to one.  Don't forget to attend if you are able, every Saturday from 1-5 pm until the end of August.  Thank you to our wonderful neighbor ladies, Tiffany, Heather, Rene and Gail for volunteering to sell tickets.
After returning home, Aly had a couple more days of morning vomiting, but since that she has had no vomiting and she is eating!  She has been craving popcorn lately, had 2 bags yesterday.  She is eating pretty good at meal times too.  She is feeling good and wants to be active.
On Monday she had a friend over who she hadn't seen for a while.  His name is Mitchell.  He was in Aly's 2nd grade class and is also on the swim team.  I know Aly will get mad at me if she reads this, but it is too cute not to share.  Most days Aly is lazy and likes to stay in her pj's.  Well, on Monday she got up and showered, put on a dressy top which she just got, and took the time to put earrings in (which she hasn't worn in months except a cute pair her friend made her one day).  We all noticed the extra time she spent getting ready for this visit.  Not to mention cleaning her room the night before.  She continues to say how they are just friends, but Tom and I had to tease a little.  Mitchell and Aly are great conversationalists.  When you get those two together it is hard to get them to stop talking.  It is really fun to listen to all though I didn't listen long.
Tuesday, Grandpa Jack returned home after staying for a week.  Tomorrow, we hopefully meet with the neurosurgeon.  He has bumped our appointments twice.  We still need to wait until the final MRI is done to determine if Aly will need any surgery, but we are meeting to establish a plan just in case.
An at home care nurse came today to draw blood to check Aly's counts and determine whether or not they are good enough to start her last round of chemo.  We won't get results until later this afternoon.  She is scheduled to go in on Friday if all is good.  It was nice not having to drive all the way to the clinic to have that done.  We can have a nurse come to us if it is not necessary to see the doctor.  I wish the doctor would come to us once in a while!

back home

Sorry I didn't update sooner...I spent the night at the hospital with Aly last night.  All of our electronic gadgets were out of battery power so I could not update while there.
Aly is home today.  We arrived home around 1pm.  She had to get a dose of platelets and a medicine which helps stimulate white blood cell growth before we could leave.  It is amazing what a bag of blood, platelets and some antibiotics will do to help make someone feel better.  Aly was extremely upset that she didn't get to go home on Thursday. They had told us on Wednesday that it will most likely just be an overnight stay.  Then on Thursday they said they wanted to make sure the blood cultures they took were negative for bacteria.  So we had to wait.  She was not a happy camper when I arrived there in the evening.  Grandma and Grandpa tried there best to lift her spirits during the day while Kevin and I were at work.  They pushed her to go and visit Maddy who was in for chemo and another patient we found out was a friend of a relative.  So, that helped a bit, but Aly was frustrated.  When she is frustrated she is stubborn.  She didn't want to leave her bed, didn't want to eat, just was in the mood to pout.  I talked her into watching Mary Poppins with me.  Midway through we took a break and took a walk and took the elevator to a floor that had vending machines.  We did a mini raid.  She picked out fruit snacks and Grape Crush.  She didn't have much of each, but it seemed to make her a little happier to break out of the wing for a little bit.
She felt really good today.  Had the color back in her cheeks and wanted to just play today.  She also ate quite well.  A subway sandwich for lunch and spaghetti noodles without sauce and some bread for dinner.  We are thrilled when she wants to eat!
Tomorrow, we are planning to attend part of the meat raffle.  Please join us if you are in the Saint Michael area.  It is at Ditto's Bar from 1-5pm.  We will probably arrive around 2 or 3 pm.  Hope to see you there!

Where do the days go?

Oh, some of these days go by so quickly, others take forever.  When you are sitting at a clinic or down at the hospital it seems to do both at the same time.  We took Aly down for her weekly check up today.  It brought about a blood transfusion as expected, but for some unknown reason she was really dehydrated today.  She also was complaining of stomach pain, similar to what she had after the last chemo round, and she was running a fever.  Last time it involved the visits to the E.R.  This time it involved a wheel chair ride from the clinic over to the hospital and being admitted for the night.  They want to observe and make sure nothing serious is going on.  They are running blood cultures again and started another course of antibiotics just in case.  They are under the impression that the stomach pain may just be a reaction related to her counts being low.  We were told that when counts are low sores may develop and Aly may just get them in the stomach region.  She did have some redness around her stomach tube as well.  So basically, as usual we just don't know.
All I know is it makes for a long day.  My dad joined me on this adventure and we were at the clinic from 12:15 until 4.  Then it was on to the hospital until Kevin, Tom and my mom came down about 7pm.  Kevin is spending the night with Aly and the rest of us stopped for dinner on the way home and arrived home at 9:30pm.  By the time we left Aly was looking and feeling much better.  She had completed the blood transfusion, was given IV fluids and a received a "stress" dose of hydrocortisone which is a steroid that just gives a boost when she is feeling awful.  I think we would've been better off getting her that transfusion on Monday or Tuesday.  She was really sluggish yesterday.  I think we've been lucky with the prior rounds and getting her in at the right times.  These last two rounds I think our appointments were scheduled a little too late and her counts were way too low.  We know what to look for now that she has one round to go!
Long, long days...

Busy Weekend

Hi Everyone!

I apologize to all of you who check the blog daily as I have been both lazy and busy.  Not sure if any of you are being affected by the Minnesota government shutdown.  It affected our holiday plans.  We usually go to Canterbury Downs to watch the horse races and fireworks on the 3rd, but the shutdown messed that up.  That was about the only thing we had planned for the weekend.  So we ended up doing odds and ends.  Managed to stay busy most of the weekend.  My dad arrived back in town on Sunday afternoon.

Aly is doing pretty good.  She is at the point now where her blood counts are the lowest so today, she is lacking energy and is not feeling good.  She is complaining of a headache, stomach ache and has not gotten out of her pajamas all day.  She had a good weekend.  She felt good most of the day yesterday.  Played with friends, but was tired by the end of the evening.  She is due for a clinic appointment tomorrow to check counts and see if a transfusion is needed.  Other than that, we are maintaining the course.