I went to work for a few hours this morning, and by the time I got to the hospital, around 1pm, they were in the process of moving Aly out of ICU and back up to the 8th floor, which is the cancer patient floor.  She is doing fantastic and we are wondering why we are still here.  Word has it that she will be going home tomorrow.  How is that for a quick recovery? Tom also returns home tomorrow, so hopefully we will have a little quality family time before Monday comes around.

Tired is the word of the day...Everyone is tired.  Kevin stayed at the hospital last night and neither he nor Aly got much sleep.  I was at home and got more sleep than they did, but still feel tired.
Aly was on some medication that was making her see things that weren't there.  She kept saying she saw webs around her and also letters on her stuffed monkeys.  She also said today, that she felt like Johnny Depp.  She didn't know why she said that, but I'm thinking it is because she watched Pirates of the Caribbean last weekend.  In that movie he is tipsy from drinking rum all the time, so that is my guess.
She also couldn't relax last night, or this morning.  While I was there today, she seemed overly sensitive to everything.  Things were causing her pain that shouldn't really cause her pain and she just couldn't relax.  She was ornery.  She was fidgety.  She wanted to be somewhere else.  I worked on getting her to think about something else.  I rubbed her hand, told her to close her eyes, and pretend she was in a hot air balloon floating in the sky.  It was probably pure exhaustion, but she fell asleep while I was talking her through that. She fell asleep around 2 this afternoon and slept a couple of hours.  Other than that, she was doing much better with her throat and wasn't coughing much at all.  I am at home again tonight.  Planning to work in the morning a bit.  Kevin called me a few minutes ago and said she was sleeping again.  YEAH!  Hopefully we'll all be less tired tomorrow!  

Tubular Thursday

Aly is off the ventilator.  It was removed this morning.  The remainder of the day, she had to deal with the extremely sore throat left behind.  She feels like there is something stuck in her throat, but it is just irritation from the tube.  It is hard for her, because her gag reflex has always been bad and that was part of her eating problem, so now to have irritation like this, it is making her upset.  She has a cough comparable to croup making it more uncomfortable.  Once again, our hospital stay is being lengthened.  They are hopeful she will leave this weekend, but of course aren't 100% sure.  They want to get her up and walking around which she's not to happy about, but after 5 days of no movement, her muscles need some work.
We decided to keep all the notes Aly attempted to write while she was sedated.  They are so fascinating.  Last night she kept asking me what time I got there.  At one point, they shifted her position so she was lying on one side.  Well, with the tube in she had some drool coming out of her mouth.  Aly, being the grown up soul she is, wrote, "I have never drooled in my life."  She is so independent.  She wants to do everything she can, for herself.  She really hates relying on others or having to wait for someone to get something for her.  
I felt guilty spoiling myself at the Ronald McDonald House in the sleeping rooms last night.  They are just like a hotel room, the bed was fabulous.  The rooms are in the interior of the hospital, so there are no windows.  It was nice and pitch black and no machines beeping away all night!  Although I didn't sleep long, I slept good.
My folks are on their way home for a couple of days then head to Texas for my niece's college graduation. Tom headed to Texas very early this morning to hang out with my brother's family and play some golf (a gift from my brother, to help keep Tom busy).  They called to brag about the 80 degree weather! Not very nice! :)  It was hard to see him go, even if it is for a few days.  I don't know what I'm going to do next year when he heads off to college...

Wednesday

Sorry for not getting an update on here yesterday...some times a break is needed.

Aly is improving.  By the time I left the hospital yesterday evening her lungs were pretty much clear.  They kept her on the ventilator all day yesterday (so she's been sleeping still) as they wanted to be cautious and give her time to rest.  Hopefully today, they will remove the tubes today.  They continue with the chemotherapy and they put her j-tube (which goes down into the intestine) back in yesterday so they could give her nutrition.
They have had to move Aly in bed every couple of hours and when they did, she would arouse and open her eyes.  She could understand us talking to her and she continued to try to communicate with hand signals.  I don't think I'm as good at guessing as Kevin was.  Yesterday, Aly got frustrated and started crying.  The nurse and I finally figured out that she had some stuff in her mouth that she wanted cleared.  Once that was done, she fell back asleep.
Kevin spent the night last night and I'm on my way down this afternoon after some time at work.

It is late in the evening now, I'm sitting in Aly's room as she sleeps.  We've had a couple of conversations through her writing on the clipboard.  She struggles to find the strength to write while under sedation.  She stirs everytime they reposition her.  Her biggest complaint is feeling junk in her throat.  Several times, she's taken the suction tube, herself, and stuck it in the "right" place in her mouth. 
They decided to wait until tomorrow to remove the ventilation tube.  They wanted to wait until her chemotherapy was completed just in case there were other complications.  They will watch her through the night and then make a decision in the morning.  
Because Aly is in ICU, we have had access, these days, to the Ronald McDonald House which is on the 3rd floor of the hospital.  They have sleeping rooms (which I'm going to use tonight) and a beautiful kitchen as well as a lounging area.  Each night different volunteers bring in dinners for the families that are using their facility.  We are also able to use the kitchen if we'd like and they have a pantry of foods available.  It has been a great asset.  I'm a little surprised that cancer patient families don't typically have access to the House, but I guess it is geared more towards critically ill patient's families.  It is a wonderful place to get away for a spell.  I want to find out how we can volunteer there, after Aly gets well.

Mon. 4-25

Aly is improving today but is still on the ventilator and still asleep. However, somehow she is fighting her way to consciousness. Kevin spent the night last night and was here this morning. He said there were several occasions where Aly opened her eyes and wanted to communicate. They gave her a clipboard with paper and a pen. She wrote, "when did I" then fell back asleep.  Later, she wrote, "why do I have a tube in my mouth."  The nurse then explained why, and then Aly wrote, "when do I get it out".  At that point, the nurse went out to the doctor and told him the dose needs to be increased because she is so coherent.  Another time she wrote letters in the air with her fingers and Kevin then guessed the word and she would nod her head for yes or no. My mom was with her this morning and she said Aly motioned with her hand like she was tipping a glass because she wanted water. Since I've been here this evening she's aroused once. Her eyes seem unfocused yet she responds to voices and wants to communicate. It is a little eerie yet amazing at the same time.
Her lungs are improving (clearing) which seems to confirm the diagnosis that it was a reaction to the blood she was given. They say if it was an illness or something else the lungs wouldn't be improving so quick. At this point their plan is to wean her off the ventilator sometime tomorrow. Another chest x-ray is scheduled for the morning. They have also restarted her chemotherapy doses this evening.
Through this we did receive some positive news. They did some blood tests to check the progress of the chemotherapy. There are tumor markers in the blood cells when cancer is present in the body. Aly's marker level is lower than when she first started treatments which normally means the treatment is doing its job.
Aly just keeps proving to us that she is a fighter. She is amazing.

Difficult night

Wow, this was the most difficult night we've had to this point, the one blessing is I don't think Aly will remember any of it, but I don't want to go through that again!

As of about 7 am this morning, Aly was placed in a medically induced coma.  Over the course of last evening and through the morning hours, she developed water/liquid in her lungs.  Her doctor believes it to be a reaction to a blood transfusion they gave her around 6pm yesterday.  She called it a TRALI, which is an acronym for Transfusion Related Acute Lung Injury.  She said this happens in about 1 out of 4000 patients!  It happens when the blood donor's blood has antibodies in it.  Antibodies are created by your body when you are fighting an infection.  It typically wouldn't hurt a "normal" patient, but cancer patients have their own antibodies and I guess what happens is those antibodies fight each other and this somehow affects the blood vessels in the lining of the lungs.  They are weakened which allows the liquid into the lungs.  They are not 100% sure this was the cause, but because her breathing problem started so closely after the transfusion they are leaning towards it.  They are also testing for viruses that cause pneumonia and doing other tests to rule out other possible causes.

Shortly after the transfusion was completed, Aly started complaining that she was having trouble breathing.  By 10pm it was bad enough to have a chest x-ray done.  At that time, her lungs did not show any liquid, but they started hearing signs of wheezing and what they call "crackling" through their stethoscope.  By 11pm she was really struggling so they made the decision to move her to Intensive Care where they could monitor her more closely and give her humidified oxygen to help the breathing.  At 1am after finally settling in and getting her hooked up to everything it got worse.  She could only take short, shallow breaths.  She was sobbing, groaning and was exhausted.  She could not get comfortable and every time they tried to put the oxygen tube around her nose she had an anxiety attack and couldn't calm down.  I can't tell you how scared I was.  After the Intensive Care Dr. and Aly's cancer Dr. conferred, they gave her some pain medication that kicked in around 3am.  I laid down and closed my eyes for not more than an hour and Aly was awake again.  It broke my heart to see her struggling like that!  Since the first pain med didn't last long they gave her a dose of morphine which only helped again for about an hour.  At 5am she was awake and this time was coughing so hard she was vomitting.  They told us she coughed so hard that one of the feeding tubes they had placed had come up into her esophagus so that had to be removed.  At 6am they made the decision to put her on a ventilator so that she could get the oxygen she needed and she could rest.
I was at the hospital with Aly all evening and night.  I was calling/texting Kevin at various points and I called him at 6am to ask him to come down.  The ventilator was in by the time he got there.  At this point, until they make a finally determination or until her lungs start to clear they will keep her sedated/sleeping.

Please keep praying that the doctors find the answers they need to help Aly.  She continues to be what seems like the one in a million patient that is affected by everything they do.  It is completely awful to see her struggle so!  They keep telling us how easy these rounds of chemo could/should be...hmmm....    

4/21

Good Good Friday Eve to you all!

Aly will be returning to the hospital tomorrow for the second round of chemotherapy.  We have to be there at 9am.  She is scheduled for a 5 day hospital stay.

She went to visit her class at school today.  She attended the last hour and a half of school.  They did a little reading and then it was time for Buzz Bingo.  A little bit of work and a little fun!  Tonight she is going to take some time to dye Easter eggs.  It kind of stinks that she had to spend her birthday in the hospital and now Easter too!  We'll have to do some major celebrating when this is all said and done!

4/19

Had to think about the date there!  These days are melting together, so much to do.  I told Aly, the other day, that she was now high maintenance.  She said, "whatever that means."

Aly has been having some great days at home.  Feeling great and she is eating! and eating a lot!  She has spent time with friends and her teacher, Mrs. Woods, has come by to help Aly with some school work.  If it continues to go well these next couple of days, Aly would like to spend a few hours at school on Thursday, before she needs to return to the hospital on Friday.  She is scheduled for her next round of chemotherapy.  She is supposed to be in the hospital for 5 days this time.  Hopefully, it will go much smoother and it will only require those 5 days this time!

Aly had a clinic appointment today.  It went very well!  She weighed in at 60 lbs.  Which means, she doesn't need to be hooked up to her feeding machine 24/7 (at least for now).  She has been eating up a storm the past couple of days and if she continues, we will only need to supplement her meals.  Their goal is to make sure she is getting 2000 calories a day!  We were also able to discontinue one medication that we were having to do every 8 hours.  So, without that med., and not needing to be hooked up to a feeding machine, which liked to malfunction and beep in the early a.m. hours, maybe we will be able to get a full night of sleep for a change!  

We are thrilled to have some good news today!  Hope you are all doing well.  Thank you for your continued support and well wishes...

Fab Friday

Hi All,

Sorry for the delay in posting, Aly DID come home on Friday.  WOOHOO!  Along with that came a lot of medicines and a feeding pump that we had to learn how to use, so it was a busy, tiring evening.  Aly is doing fabulous, feeling good, no pain.  She looked, again, through many of the gifts she received as Kevin and I had a home care nurse teach us some things.  Believe it or not we are still learning.  My guess is much will change as we go as well.

Buddy, her monkey at school, came home for the weekend too.  He had many great pictures to share of his days spent at school.  He did a lot of work and attended gym and music class.  He lifted weights and attempted to play the recorder.  He also brought home a lot of notes for Aly from her classmates.  Thank you Mrs. Wood's class for taking such good care of Buddy and keeping him busy.  It looks like he's having a great time! The pictures are adorable!

Aly is scheduled for her next chemotherapy treatment this coming Friday already.  We can only hope that it will go much better than the last, now that they know how Aly handles things.  Until then, I hope she can enjoy some free time at home.

Transformation Thursday

Yeah, I'm trying to be clever with the titles!  :)

But, there really was a transformation in Aly today, actually a few transformations.  She felt great, and got a great night of sleep after several not so great nights.  Aly was also in great spirits today and very talkative.  I can't begin to tell you how happy that made us.  The biggest transformation today was after Aly made the decision to shave her head.  That decision took a lot of courage, but I think in the end it was a great one.  Any time she combed her hair or ran her fingers through it, her hair was coming out.  It was a constant reminder, as she'd see it on her pillow, blankets and pj's.  She got in the shower this morning and told me she didn't want to wash her hair.  I didn't ask why, but I knew she was afraid of seeing more hair come out.  When she stepped out of the shower she told me she just wanted to get it cut off.  We told one of the nurses Aly's decision and she told us there were a couple of baskets filled with knit hats in the family lounge on our floor.  Aly and I walked down to the lounge and picked out 2 really cute hats.  After a battle to find a trimmer that worked, I held her hands as she sat while one of the nurses so kindly did the cutting.  I could tell Aly was fighting back tears and her bravery amazed me.  When she was finished she truly seemed happier.  Some of the child life helpers came in and brought some wooden figures and paints for Aly.  She painted a cute little giraffe.  She had a really good day.  I hope that continues.  There were hints today that she will be ready to go home tomorrow.  Please cross your fingers and say some prayers!      

challenges

We continue to try to maintain some sense of a normal schedule, but it is near impossible!  I took a turn staying at the hospital last night, then came home around 5 pm, just in time to eat a quick bite and drive on to Tom's hockey game.  Kevin worked this morning and then relieved me at the hospital and he is staying there tonight.  I don't know how long we can continue this.  My folks are staying with us and they have been a great help, but Kevin and I really feel one of us needs to be with Aly and to keep in constant contact with the doctors/nurses caring for her.  The worst of it all is Aly still remains in the hospital.  She continues to be a "rare" case.  Every time they give her a new dose of something, they tell us the rare side effects and guess who gets those rare side effects??  Today, Aly received a medication that is supposed to stimulate new cell growth, to speed up the recovery process.  One of the "rare" side effects is bone pain (your body's blood cells are grown in your bone marrow).  Well, Aly woke up at 2 am this morning, in such pain, she couldn't stand it.  They gave her morphine.  She slept well for a while until about 6 am, then the pain started again.  Another dose of morphine.  At first we thought it was due to lack of movement as she has been isolated in her room for 2 days with Influenza B.  A physical therapist came in and did some exercises with her today and then a massage therapist came.  It seemed to help for a little while and she drifted off to sleep, but now this evening she is in severe pain again.  We are at a loss.  I don't understand why everything is affecting her so severely.  I can't imagine going through what she has gone through in these, now going on 13 days, in the hospital.  Please pray for Aly to maintain her strength and for the doctors to figure out the best course of action with the least complications!  

Happy Birthday 4/11/2011

Happy birthday to you, happy birthday to you, happy birthday dear Aly, happy birthday to you!

Aly turns 10 today.  We couldn't get her out of the hospital in time, but things are looking better.  After many tests, they finally figured out the temperature and cough are coming from influenza B, which she had to have caught in the hospital because it is a fast moving illness.  She was feeling really good yesterday and was moving, walking faster than we've seen her move since she's been in the hospital.  Hopefully that will mean good news!  The Dr. told Aly that if she has to be in the hospital for her birthday, she gets a do over.  She gets to pick another day to have another birthday party so she can fully enjoy it.  So, we will have to spoil her all over again!  :)  

Thank you to all the 4th grade classes at Big Woods Elementary for making Aly birthday cards!  That was so much fun!

4/9

Believe it or not, we are still at the hospital.  Yesterday, Aly said, "I'm beginning to feel like I live here."  Oh, this is so hard!  It is starting to feel like that movie Groundhog Day.  She continues to have a low grade fever and yesterday developed a bad cough.  As expected, her blood levels dropped significantly so they did a blood transfusion as well.  She is a courageous young girl.
Somehow, through all this she has managed to gain 5 pounds which is amazing because she has had such an upset stomach it seemed nothing was staying in her body!  What is also amazing is that the bubbly Aly we knew a year ago is starting to return.  She was talking up a storm earlier in the day yesterday.  Now the cough has taken over, so she isn't talking much, but there is a definite change.  Her eye sight is also changing.  Her "good eye" was at 20/40 and the eye she couldn't see out of was at 2/400 upon entering the hospital.  Aly said now, she can see without her glasses with her good eye and she feels that she can see a little more with her bad eye.  Still very limited, but better.  I hope that is a good sign!

We also found out that Aly may be eligible for a wish granted by the Make a Wish Foundation, which would be a lovely thing to look forward to after all this is over.  There is also a program called Monkey in My Chair (how appropriate for Aly, right?)  We take a stuffed monkey to school and place it in Aly's chair when she is absent.  That way the kids will more likely remember that Aly is missing.  The monkey has a backpack so kids can stick notes in the backpack and Aly can also send notes to the class.  Aly has named the monkey Buddy.  She comes up with the greatest names!  I think that will be fun for her class.

With everything moving so quickly after diagnosis, we really hadn't had a chance to ask specific questions, and now, hanging out at the hospital, we've found out more things.  For those of you who are interested, Aly's tumor was about 2 cm x 2 cm, which in the scheme of things is rather small, so they feel it was caught early. It is located in what they call the midline region of the brain (I believe I mentioned by the pituitary gland). There is not a specific name for her type of brain cancer, just that it is a mixed germ cell tumor.

Please continue the positive thoughts and prayers.

4/8

We are still in a holding pattern at the hospital.  They told us yesterday, that Aly is a very complex girl. (I could've told them that! :))  She is having some issues, the nurse practitioner said, she hasn't seen in the 20 years she's been working with cancer patients.  It seems they give Aly meds for one thing, then something else goes out of whack.  Aly maintains good spirits, she is a trooper.  She has been very matter of fact about everything.  She continues to surprise everyone with the things she remembers that the doctors and nurses have told her.  For those who know Aly well, we know she is sometimes wise beyond her years and she proves that everyday.

Wishful Wednesday

It is more likely, than the rest of the days thus far, that Aly will be coming home on Thursday.  Keep your fingers crossed!  She was in good spirits today.  We took her for a walk outside and sat in the sun for a little while.  I also got her to do a bit of school homework, yeah!  Spring is finally here, and hopefully to stay!

Oh, I spoke too soon...Kevin just called me 9pm, Aly suddenly has a fever.  He said the nurse told him she must be fever free for 24 hrs, before she can leave.  Oh, that stinks!  She was so excited about getting out of there! Bummer!

Tweaking Tuesday

This will be brief, Aly is STILL in the hospital!  They are trying to get the medications and feeding formulas right.  Aly is doing really good, but they haven't been able to level out her sodium levels.  They go really high and really low, so they are trying to adjust medication doses so it won't fluctuate so much.  She is also trying a new feeding formula, one that hopefully won't irritate her stomach so much.
Other than that, like I said, she is feeling pretty good.  She played a game of Skip-bo with Kevin today and we watched a movie when I arrived.  Deputy Dave from the Big Woods D.A.R.E. class came for a visit.  Thank you Deputy Dave!

Monday, Monday

I'm trying something different today, writing while I'm awake, so I don't forget important details like the spinal tap results!...
 
It is a good news, bad news update today.  I'm guessing many will be like that in days to come.  Starting with bad news, Aly is still in the hospital.  She is still having trouble going to the bathroom, and that is what is keeping her here.  They are also trying to tweak the feeding formula because that is giving her an upset stomach.  So, until they figure out those two things, she will be here.  We thought that maybe it was a helpful thing (for us) that she'd be in the hospital over the weekend, but the fact that the doctors in charge are not typically here on the weekends is really frustrating.  The "fill in" doctors don't seem to know much or have any sense of urgency.  I will say, the schedule was totally up to the doctors and not our choice.  They wanted to move quickly, and they did, but now it is like hurry up and wait!  On top of that, she was able to shower today and as they were drying her hair, there was some hair loss.  Not a significant amount, but it was there.  I truly can't believe that this is all happening so very quickly.  If you are unaware of what chemotherapy targets, it goes after the fastest growing cells.  Your hair folicles are one the fastest, next to cancer cells.  
The good news, is that Aly is feeling pretty good, health wise.  Her platelets count and white cell count actually went up, which they say is a bit unusual at this stage of treatment.  Normally they are on the way down as the chemo drugs start their attack. Platelets help your blood clot.  White cells help you fight infection. Both are important to maintain during this ordeal.  Hopefully, that type of news will continue! We also had a little bit of fun today.  The mascot and a couple of players from the Minnesota Swarm (lacrosse) came to visit.  It sounds like they get quite a lot of visitors on this floor.  Another patient's family told Kevin about Pat Williams (Viking) coming and having a scooter race with some of the kids.  It is truly appreciated.  Some of the kids here have been going through treatments for a long time, years in fact.  I am amazed at their good spirits.  At one point, we couldn't get the DVD player, in Aly's room, to work.  Leave it to a kid to help solve a technical problem.  Halen, a teenage patient here, made sure Aly was taken care of.  They have a cart with a tv on it and an Xbox.  He came up with the solution of watching the DVD through the Xbox.  He helped wheel the cart into Aly's room and showed her how to use the Xbox controller to run the movie.  He's a great kid, battling leukemia.  We were told he practically lives here.  How hard would that be?  Make sure you take the time to hug your kids tonight, every night for that matter!  

UPDATE on update:  Aly started going to the bathroom tonight!...cross your fingers that she will be out of the hospital on Tuesday!

4/3

I forgot to mention, we did get a great piece of news.  The spinal tap results came back and it showed no signs of cancer, so nothing has spread.

4/2/11

Well, we are quickly finding out that there are so many ups and downs with this process.  Kevin and I have spent hours learning what we will need to do to take care of Aly once she is home.  It seems like we will be bringing home a newborn baby.  I think we will also become honorary nursing assistants.  They are starting to gather feeding formulas, medicines, measuring tools, etc.  Yesterday, when I got home there was a message to call to confirm drug deliveries.  The price of one medicine alone is a mortgage payment.  Thank God for health insurance.  
Today, Aly completed her first round (which was 3 doses in the past 3 days) of chemotherapy.  She seems to be doing well as far as not much nausea and was a little more herself today, as she was able to get up a few times and walk around the hospital floor.  They thought she would be able to come home today, but she is having trouble urinating, and they cannot figure out why.  At first they believed it to be the morphine they were giving for pain after her surgery, but after stopping that, she is still having trouble.  The nurses are now saying they'd be surprised if Aly goes home tomorrow either.  Aly's attitude has quickly gone from a sweet polite patient, to an angry one.  She has every right to be angry, and we feel so bad.  Kevin happened to talk with a couple who's child is going through treatments, and they were telling him how chemo really affects the personality.  I guess it messes with the hormones.
I must say thank you to Kevin who has been the one staying at the hospital this time, as I have been coming home and spending time with Tom.  Also, to my mom who has been an amazing help while she's been here.  I know I don't say thank you enough, I'm planning to get better at it really quickly!
I so enjoyed my evening with Tom last night.  We talked a lot and he, on his own, came up with the idea of creating a logo he wants to have put on a golf hat he can wear while golfing this year. (Tom mentioned how Phil Mickelson has a breast cancer ribbon on his hat, to support his wife and mom.)  He would also like to share the logo with others that would be interested.  If anyone knows anyone who would help us do that, it would be awesome.  The most costly piece is usually having the logo digitalized so it can be reproduced/embroidered.
I am amazed at how quickly news spreads.  We've heard from friends all over the world.  It is unbelievably heartwarming that people who have never met Aly are so compassionate and willing to help.  THANK YOU!