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!