Hot, Hot, HOT!

Oh my, for those of you not in Minnesota, it was 95 today!  We just can't get a happy medium here.  It is either upper 60's and rainy or upper 90's and humid!
Aly is still holding her own.  Today Kevin left work early so we could get out on the lake and cool down.  Aly was sooo excited.  She's been wanting to go tubing.  Yes, she was feeling good enough to do that.  Her energy level is still up and down.  Mornings still tend to be a struggle.  She has been starting each morning still vomiting.  By lunch time she tends to have a bit of an appetite and eats a little.  Today, she surprised us all by pretty much eating a full meal at dinner time.  She had most of a subway sandwich with some apples and a juice box.  As Kevin said, that's more than she's eaten all week.  We haven't seen that in quite a while!
Tomorrow, we have a clinic visit.  They are doing an ultrasound just to rule out any stomach issues.  They will also being checking her blood counts.  We are hoping it will not take all day.  We were supposed to meet with a neurosurgeon as well.  His office called, as we were eating dinner, to see if we could reschedule.  We were hoping to get everything done in one drive to Minneapolis.  It never works that way. We shouldn't be surprised anymore!  There is never any concern about our time.  Our time is not as valuable as theirs.  They rule the world.  We just go broke paying medical premiums that pad their pockets.  That is the conclusion I've come to.  Oh, I've got a great story that I didn't share, from our last trip to the E.R.  The E.R. doctor figured out that our last name of Juntunen was Finnish.  To make a long story short, she said she recognizes Finnish names because she's had a couple of "au pairs from Finland"and most Finnish names end in nen.  Who calls nannies, au pairs and who hires them from Finland?  And do you really think we were interested in this story at 4 am when our daughter is laying in the E.R. and none of us has had any sleep?   Ok, I'll get back off the soap box.  Anybody want to back my campaign for president in 2012?  
We are meeting with the neurosurgeon just in case Aly needs to have surgery.  We do not know yet and a decision won't be made until they look at the MRI after her last chemo round.  They would just like to see Aly and start a plan if it is necessary.  It will just be next Wednesday instead of tomorrow.  Which means more time off from work and more long drives to Minneapolis...Yes, I'm hot, hot, hot...hot tempered.  

smooth...

Aly is at home!  This round went smooth!  Aly, amazingly, is feeling pretty good today.  No vomiting since early this morning.  She was out enjoying the pretty nice weather and spent some time playing with neighbor friends this afternoon.

First Day Done, 2 To Go...

The hospital stay is going good so far.  The first round of chemo is completed, two more days to go.
It was a bit of a challenge for Aly.  Her DDAVP medicine did not really kick in today.  It is the one that helps her not have to go to the bathroom so often and also controls her thirst.  They did not want to give her another dose because they do not want the chemo sitting in her bladder, so they wanted to make sure the fluids were moving and flushing.  NO problem there!  They made her wait until 6 pm to take another dose of DDAVP.  Before that time, between 10 am and 6 pm, she consumed a 32 oz gatorade and three 20 oz bottles of water.  Yeah, I know!  This was on top of the IV fluids they were giving which were also helping to flush out the system and her feeding formula.  By 6 pm she was wishing she had a potty built into the bed!  Poor girl!
She was also bummed about the nice weather today.  When she has to go into the hospital, it is guaranteed that the weather outside is gorgeous.  When she's at home, the weather has been miserable.  It didn't help that the nurses kept talking about it and saying that they had plans to do things outside over the weekend.
We watched a marathon of "Say Yes to the Dress" to pass a lot of the time today.  Love that show!  Aly also did some drawing, a little math, and made a hammock out of a mask for her monkey, Tiny.  She also made a long dress for Tiny out of a blue silicone glove.  Anything to keep her busy!

Aly had a terrific day today.  No vomiting, played with friends, swam with her swim team and ate some food!  WooHoo!  It really stinks that right when she is feeling great, it is time for chemo again.  It'd be nice if she had a little more time in between.
Please keep us in your thoughts and pray that this round goes as smoothly as the last 3 day round.  Four rounds down, 2 to go!
If any of you in the St. Michael area are interested, I posted volunteer opportunities to help at a meat raffle at Ditto's Bar on Saturday (They are actually doing a meat raffle EVERY Saturday during the summer).  If you don't want to volunteer, you can go and have some fun.  Buy some raffle tickets and possibly win some meat or drinks.  All proceeds will be split between our family and Maddy Wenner's family.  The meat raffle is sponsored by STMA Sea Devils.  Thank you!
Thank you to STMA United Soccer as well.  Coach Hoffman brought over a cozy, warm sweatshirt for Aly and a soccer jersey signed by many of Aly's team mates from last year.  Thank you for your support!

volunteer opportunities

I know we have many people wanting to volunteer to help Aly's family...here is an idea!

We still have some openings for the meat raffle. Any adult can volunteer it does not have to be a swim parent – it can be neighbors, grandparents, aunts, uncles, friends. All the money that this fund raiser gets will be given to the 2 families where the swimmers have cancer (Aly Juntunen and Maddy Wenner). We’d like all 4 spots filled for each Saturday. You need to arrive a 1 pm and it goes until all the tickets are sold (can be up to 5 pm) at Ditto’s Bar in St. Michael.

Here are the openings

2 spots for this Saturday 6/25

2 spots for 7/16

1 spot for 8/6

4 spots for 8/13

Here is a link to the sign-up which is under the Misc. Volunteer Jobs (Apr 15 ~ Aug 15, 2011) event from the Events screen (the very first one on the events screen)

http://www.teamunify.com/EvJobSignup.jsp?team=mnsdvl&event_id=140261

This is being organized by Aly's swim team.  There are 2 girls Aly and Maddy who are battling cancer.  All proceeds from the meat raffle will be split between the families.  We would really appreciate friends and family filling these volunteer spots so we can make the most of the opportunity!

Thanks!

Beautiful Blankets

Aly has received several beautiful, meaningful blankets.  The latest was from her swim team, I wanted to share a pic of it.  The other pic is of the blanket that her classmate's grandma made.  I mentioned it before, but it had all the names of her classmates embroidered on it and Aly's name was in a heart in the middle.  All the blankets she has received have meant so much and have been special in different ways.
Aly is feeling really good today and currently has 4, yes I said 4, neighbor friends over to play.  So, I can comfortably say she is not lonesome or bored today!  She actually has been eating pretty well the last 2 days as well.  That makes me and the rest of the family extremely happy as it is a true sign she is doing better!  The only time she wants to eat is when she feels good.
We had a stormy (weather) morning here and are expecting more storms this evening.  It is a good day to stay inside!

quick note!

I am just getting home from taking time out to go scrapbooking with my good lady friends/neighbors (missed you Holly!).  Thank you Heather and Tiffany for joining me in my much needed break!
That should tell you that Aly is home and doing good.  She came home this morning, seemed to be feeling good and was back to her chipper self.  A drastic improvement over the past few days!  She ate some pizza rolls for lunch, so that proves even more that she is feeling better.
A home care nurse came out to show us how to use a medication pump that Aly will be hooked up to for at least the next two days.  It automatically doses the antibiotics that Aly needs.  The blood culture they took yesterday came back as negative for bacteria, so hopefully that means she is on her way back to better health and can enjoy this week at home.
Happy Father's Day to all you dads out there!

P.S. - I guess I missed Ronald stopping by...Ronald told Aly she must have hit the clown button instead of the button that summons the nurse.  He stopped by while Aly was waiting to be discharged on Saturday morning...

Wake up call

2:20am brought a wake up call from the hospital this morning. The blood culture they took on our visit Wednesday night came back as being positive for bacteria. Aly has some sort of staph (not sure on spelling) infection. We were told to bring her in right away. What a lovely way to start the day!
Her infection fighting cell count is at zero so her body is not able to fight this on it's own, so that is why it was important to get her down here so quickly. Of course once we got down here we had to sit and wait to be seen. If you can believe it, there was only one ER doctor on staff. By the time Aly was checked over and admitted to the cancer floor it was 6 am. It is always hurry up and wait.
The cancer floor has moved to their newly remodeled digs so it is very nice, but there is no place like home.
Aly is doing ok. Like us, she didn't understand the 2am wake up call. In her normal fashion, she had a reaction to the antibiotic they gave her. This one had odds of 1 in 4 patients. It is called red man syndrome. Her whole head turned bright red and she said she was really itchy. They put her on benadryl and she was fine after that. Just so odd! She is also complaining of major headache. It just is such a slow process to get medications.
We are unsure the length of the stay hopefully just a day.

long days, long nights

Well, as usual, unexpected things come up.  Normal is really not possible.  The nurse asked us today, if we are doing anything this summer, any long weekends away planned.  Sometimes I think they forget what they are dealing with.  It would be rather difficult to go anywhere for a long weekend.  Last night we made an unexpected trip to Children's Hospital Emergency Room.  Aly had been complaining about pain on her left side all day yesterday.  Last evening she spiked a fever of 101.3.  We are to call the clinic when any fever goes over 101.5.  I thought that was close enough.  Aly was pretty lethargic all day, she'd attempt to do something and would have to sit down mid way because she was so tired.  This not being the norm to this point, I decided to make the call.  We were told to bring her in for evaluation.  We got down there at 10pm.  By the time we got there her temp dropped a little to 99.6.  They did all the tests, checked for infections, checked blood counts, etc.  Her counts were really low, but no infections.  They took the cautious road and gave her a dose of antibiotics and some saline fluids as she is still occasionally vomiting.  They sent us home around midnight.  So, we got home at 12:30am.  Tom is taking part in the annual summer hockey camp and has to get up at 5:45am.  On top of that, Aly was also scheduled for an MRI, in Minnetonka at 8:30am, then a clinic appointment after.  So, once again, we had a long day.  We've been tinkering with her formula to see if that helps with vomiting.  We've been trying to figure out the continued pain.  She also had to have a dose of medicine that helps get the white blood cells producing.  What was to be a short clinic visit turned into hours.  Aly just wanted to go home and so did I!
We were told they wanted to do the MRI to make sure progress was still being made on the tumor.  They said that sometimes, the chemo does a good job on younger cells, but more mature cells then have room to grow more, so they wanted to be sure that was not occurring.  The MRI looked good.  The tumor continues to get smaller.  They are, however, still throwing in the possibility of surgery.  They just don't know at this point.  That decision will be made once her chemo is completed.  They will see what is left of the tumor.  The hope is that there will be nothing left and we will just be able to move on to radiation.  
I am finding it really hard to deal with the unknowns.  I'm a daily routine person.  I need schedules, things written on the calendar.  I need to know what to plan for.  I am not spontaneous, I don't like surprises unless it involves a lovely gift of some kind :)  This is tough.  Everyday it seems Aly has plans of something she wants to do, and everyday something comes up to spoil it.  I sure hope next week brings good things before she has to go in on Friday for the next round!  She is really craving attention from friends and is feeling lonely a lot of the time.  She'd appreciate a note, a phone call or a visit when possible.  

Monday afternoon brought us a clinic appointment with low blood counts, so a transfusion was in order.  Loved how the dr. said, "well, we can do a transfusion today, or you could wait a day or two and bring her back to check the counts again.  She could get to the point where she is so tired she wouldn't want to get up or some patients pass out because their counts are so low their body can't handle it."  Oh, that sounds like no big deal to me, how bout you??  Uh, yeah, we'll take the transfusion now thank you very much.

So, as usual, what we thought would be a quick clinic visit turned into a few hours.  We did not get home until 7pm, just in time to meet with the Make a Wish people.  Aly still can't decide what she really, really wants.  She is thinking a pool in the back yard (sorry Heather, that would include a fence), or the other option is a trip to Hawaii.  The pool would have to be an above ground as they will not attempt an in ground one.  She can't decide.  I know what my choice would be, but I am keeping my mouth shut.  It must be totally her choice as it is her wish and she is the one going through all this ______(insert your own word).

Today, she is feeling pretty good.  Still kind of down in the dumps, even after talking about fun things.  After talking so much about swimming this past week and having the swim team invite her to swim any time she wants, she told me she didn't want to go swimming this evening as planned.  I think her insecurities got the best of her.  She told me she was going to wear her "big" swim suit, and later I figured out that she was worried about her stomach port sticking out.  I think she is also very self conscious about not having any hair and people seeing her without her hat on.  I finally said, "how can you not swim when you've been talking about it for so long." So she went.  She lasted about 20 minutes and then was tired and had had enough.  Coach Terri said she still had her "perfect" form.  I think that made her feel better!  :)

We've just got to keep her busy.  When she is idle, she dwells on the negatives too much.

Saturday

Aly is having her ups and downs.  She was feeling good yesterday afternoon.  She wanted to go to the Sea Devils swim meet.  She stayed for about an hour,  watched her friend swim, and visited with her coaches.  This morning now, she is not feeling good.  Still vomiting and lacking energy.  It kind of goes back and forth like mood swings.  It is hard because she wants to do so many things, but she just can't.  She wants to swim, she wants to play outside, but her body is saying no.  Today she feels like summer is going to pass her by without being able to enjoy it.  These days are tough.  Granted, she is entitled to have these days, it is just hard to see and deal with.

Still here

Tuesday has come and gone, we are still at the hospital. We were supposed to return home yesterday but vomitting got the best of Aly. She ended up very dehydrated. They had to give her iv fluids because she couldn't keep anything down, even with all the nausea medicine.
She is still sleeping this morning and we are waiting for the doctor shift change before we determine if she gets to go home today.

Update...well, I should post more often.  Shortly after I posted, the Dr. came in and said Aly could go home.  So we are now at home and Aly already has a couple of friends over, playing quietly, but never the less playing.  She is doing much better, but still doesn't want to eat.  Not that I blame her, after the bout she had yesterday, but we've got to get something in her system!

Sunny Sunday

We are on day three of treatment. Aly is doing pretty good. Yesterday she was in good spirits, wanting to get up and be active. We played a lot of Uno. We also watched the movie version of Annie. Her class had gone to see the play at the Children's Theater so Aly was interested in watching the movie to compare. We both decided the play was better. The movie was too long and maybe the fact that it is an old movie versus the play being a bit modernized made a difference.
She is tired today. She was up vomiting quite a bit during the night. This dosage of chemotherapy goes every 20 hours so they were also administering that during the early morning as well. Other than that, things are as normal as can be expected. A huge improvement over the last drama filled 5 day session.

boring is good...

We have found out that boring is a good word.  Last time Aly was in the hospital, the Dr. said, "you are the most boring patient I have today, it must be time for you to go home."
Aly has been doing good.  She has enjoyed almost 3 weeks at home.  No major issues as far as cancer patients are concerned.  She was able to finish off her school year today.  The school had Rally for Aly day today.  Everyone who had purchased a t-shirt and/or wristbands were wearing them.  Others wore blue, as that is Aly's favorite color.  Aly is not home from school yet, but I'm sure she is living it up like a rock star today!  It also marks her last day in elementary school.  I'm just so glad she could take time to enjoy the day.  Thank you, again, to Big Woods staff and students for supporting Aly in this tremendous way.  We can't express how much it means to us to know so many people are rallying around Aly.
Tomorrow, we head back to the hospital for round 4 of chemotherapy.  This is the 5 day session, and because there were so many complications with this dosage last time, they are going to go ahead and admit her directly into the ICU.  They are better able to monitor everything, as a nurse is solely assigned to each patient.  We can only hope this round goes much better.
We ask, as you all get busy with your summer plans, that you continue to keep Aly in your thoughts and prayers.  Thank you for your continued support.  

The kids got to enjoy a sumo match, and the 4th grade teachers singing, "Happy Trails to You" to the 4th graders. (Thank you to Grandma Jan, who was able to sneak in and take some pictures).