Sunday, January 30, 2011

First Week at Home

Queen of the Remote!
Morgan's first few days at home were spent in bed resting.  We have her medications on a schedule and keep the liquids coming.  We take walks around the block and watch plenty of movies.  Just since the surgery Morgan has watched every single episode of Gray's Anatomy 7 seasons as well as several movies.

She is getting stronger every day and sometimes forgets her own limitations...but then she pays for it for the next few days.  She is healing well and the doctors are impressed with her progress.  We got a phone call about the pathologists report.  They said that all of the tissue was benign!  There were small spots of scar tissue found which the pathologist said was cancerous cells which were killed by the chemotherapy.  The most interesting part is that they found the same type of results in the other breast as well.  This could very well mean that if we hadn't done a "double/bi-lateral" mastectomy, then there could have been cancerous cells left in her other breast.  It looks like after all of the crazy back-and-forth decisions...we were led to make the right decision!!!  We are so grateful for the results!

Ten days after surgery two of Morgan's drains were removed.  We need to get the other two out so she can begin the tissue expansion once a week for about six weeks.  When that is over, she will have five weeks of radiation, two or three months to heal and then her reconstruction.  Trust me: next time I won't leave the recovery room until I see the pump connected to her IV!!!!

Morgan still has her up days as well as her down days...but no one could be more proud of their little girl!  Love you sweetie!!!

Our Hospital Stay

 Morgan was in a lot of pain when she was rolled into her room.  It was pretty bad and we all wondered where her pain pump was.  Johnny and I had talked to her surgeon that morning before surgery to make sure that her pain would be kept under control.  I knew how much it was going to hurt and I was really scared for her.  Her doctor had explained in detail about her pump so it was a mystery why she didn't have one connected already.  The nurse said that she couldn't find a written order for it and that she didn't think they normally put a pump on pediatric patients.

They tried some IV meds and also some oral meds but nothing seemed to work.  She was in so much pain and it was awful to watch.  Finally, after making some phone calls and doing what we call, "pulling a Shirley MacLaine," her other surgeon happened to walk down the hall and I grabbed him to help.  He couldn't believe that she didn't have a pain pump.  When he looked it up on the computer, they had just put in the order.  After much too long, they finally hooked her up and she was able to control the medication.

 It wasn't strong enough....I had left for the night to get some sleep and Johnny was there with Morgan alone. (We all had rooms at the Marriott by the hospital so we had a 5 minute commute) The original nurse decided to take off the pump and try oral and IV meds.  Luckily she had a good nurse who kept up with her pain and gave her shots as needed.  When I arrived in the morning and found out what had happened, (as Morgan says) "I flipped a biz!"...probably to the wrong person, but the mama bear in me came out.  The pump came back...with a stronger medication. YAY!!!

Other than that first 24 hours....we feel really good about the hospital stay.  We, the family, were treated very well at Huntsman.  The rooms are larger and have a double size couch pull-out.  There isn't a standard meal delivery, but it is more like room service.  You call in and order whatever you want from the menu.  If it is for the patient, it is included in the hospital bill...if it is for family and/or friends you pay with a credit card.  But, trust me, it is the best hospital food you'll ever eat!

There were several of us who stayed with Morgan.  Johnny and I took shifts so that one of us was with her at all times.  She was up to the bathroom on her own within the first hour and had to take seven different walks around the loop each day.  Morgan's friends came up to watch a movie and take a walk down to the second floor to see the amazing 24,000-piece puzzle on the wall.  (If you are ever up there, go see it and read the wall plaque!)

Morgan's surgery was on Friday and we brought her home on Monday with four drains attached.  She begged me all the way home not to brake fast or turn too sharp.  We made it in one piece and boy, are we glad to be home!!!

Sunday, January 16, 2011

Surgery 1/14/11

We arrived at Huntsman at 7 am...Morgan, myself, and Morgan's dad Johnny.  We went into a small pre-op room and Morgan changed into a gown & socks.  After the usual urine sample, vitals, and consent forms; Morgan was taken down to another, separate area for an injection.  The shot was given directly into her right breast and made of nuclear material so the Dr. could locate the cancerous margin left from her original tumor.  I wasn't able to go with her, but Morgan said that the first shot was a small needle used to deaden the area and then the nuclear shot had quite a long needle to reach clear inside.  It must have been okay because she didn't act like it was any big deal when she returned to the room. 

When the nurse came into the room and listened to her heartrate, it was going quite fast....and she said, "Might we be making you nervous?"  But the rules of the room were very specific...."Whatever makes Morgan happy!" The head OR Nurse, Kitty, told Morgan that she would be there to watch over just think of her as Morgan's Guardian Angel.

Dr. Neumayer returned and drew surgical reference marks on Morgan's chest with a purple marker.  Great set of tattoos! :)  The IV was put in at 9:50 which Morgan said, "tastes weird."  At the last second, she injected something to relax her and her head fell back and hit the pillow almost immediately.  We kissed her goodbye and they rolled her down the hallway at 10:00.

Johnny and I went upstairs to have some breakfast.  My phone rang at 11:00 and it was a nurse in the OR.  She just wanted to tell me that they had started sugery, Morgan was doing great, and not to worry.  We received another call at 12:00...axillary (under-arm) lymph nodes were negative!!!!  Dr. Neumayer would be finished with her part of the surgery in about 45 minutes.  They called again just before 1:00 to tell us that three nodes were actually removed and Morgan was doing great.  Dr. Neumayer came out around 12:30 to see us.  She said that Morgan did great and that she has "amazing tissue!"  She mentioned that Dr. Agarwol had about 1 1/2 hours per side so we were planning to wait another 2 hours at least.  At 2:00 (an hour earlier than expected) Dr Agarwol came out and said that everything went as expected and she would be in recovery for about an hour.

I had asked about every person we saw if they would allow me to see Morgan in the recovery room.  It is pretty much standard practice that no one is allowed back there to preserve the other patients' privacy.  But, since Morgan is young, and she had woken up from the lumpectomy very upsent looking for me, they decided to make it happen.  When I arrived back there, she began to cry and told me that she always needed her momma and that I couldn't leave her.  She wanted to know if the other girl, who was supposed to be after her, was in surgery yet.  I said that she was in there right now....she said, "Too bad, I need to warn her.  It hurts so bad.  She needs to know it feels like an elephant is sitting on my chest."  I stayed back there with her for a while, but once she was ready to go to her room, I left to get the family up to her room for when she got there.  We made it!!!  She is cancer-free and the worst is over!!!!  Love that girl!!!

Thursday, January 13, 2011

PET Scan Results!! Good News!!!

Hey is a GREAT day!!!! Morgan is now cancer-free!!!

Yesterday, Morgan had to go without any sugar or caffeine for about 18 hours before her scan.  We arrived at 9:30 am and once they checked her blood sugar levels, Morgan had to drink a large glass of lemon Crystal Light with iodine...yummy!!!  I even got a sip to see how great it tastes...NOT!  While she was drinking away, they inserted an IV into her arm.

Then, as the technician calls it, Morgan got to go into "Time Out."  This is a small room with a comfy laid-back chair, in which she gets to just lay there and rest for about an hour after getting an injection of a Radioactive Isotope.  I wanted to get a picture of her in the room, so I had to hurry before the shot because they didn't want me to come in contact with the radioactive waves she would be emitting..j/k.

When I saw the picture...I just knew I had to share, because this is just typical Morgan style.  But I made her smile and give me a nice shot to share too!  (We really weren't trying to kill her in the back room, however this treatment would make her light up and not get through any airport security scanner!)

Once I left the "time out" room, she got the injection and turned on her ipod to relax for a little bit over an hour.  Then they took her into another room with the CT Scanner, turned the music up really loud (she burned her own cd with a "PET Scan Mix"), and got strapped in for the ride.  The scan lasted about 30 minutes and then they gave her the IV solution and she had a chest CT in the same machine.

By the time she came wandering out into the waiting room...she was a little dazed and confused.  Last time they had let me go into the scanning room with her.  I remember she was very wobbly trying to get re-dressed so I really wonder how she made it this time.  She was starving since she hadn't really eaten for 24 hours so we grabbed a taco at Taco Time with Kaylee and she went home to sleep it off!!  Now the waiting began....

We went into Dr. Beck's office on Wednesday at 3:30 to get the results.  Some of you may now recognize our doctor as she was on KSL Channel 5 News the other night in the story about Utah Attorney General, Mark Shurtleff and his fight with colon cancer. 

At first, we weren't sure what to expect because Dr. Beck's demeanor was a bit deceiving.  Finally, she started talking about the CT scan and said that it was.....fine. (just like that with the big pause and no emotional whoopee!)   Of course we all gave a little scream.  Then she went to the PET scan and said that it all looked....normal.  (again like it was exactly what we were expecting...)  Johnny was on the speaker phone and Dr. Beck told him we were dancing around like Mexican Jumping Beans!!!  p.s.  there was a little bit of "uptake" in her nasal region, but that was due to her stuffy nose...;D

This is the GREATEST news!!!  Some of you don't know many of the details, but we were told that if the cancer had spread to anywhere away from the breast and internal mammary node areas, then it would be basically incurable.  We would do everything we could to prolong and sustain her life, but that it would eventually take her. 

It has been a long and arduous journey.  We don't take any moments we have for granted.  Morgan and I have a relationship that has grown leaps and bounds.  I wouldn't recommend anyone have to go through this, but there have definitely been some wonderful blessings poured out among us.  We have just the best time together and we ARE together....all the time it seems!  I wouldn't trade that part for anything! 

So tomorrow we have a couple of doctor's appointments to go to, and then a family dinner with her dad.  Hopefully we can all get a good night's rest before our new leg of the journey begins.  We won't know the exact time of her surgery until Thursday afternoon, but we will be at Huntsman Medical Center for at least two to three nights.  Morgan is so cute.  When she had her surgery at Primary Children's Medical Center for her Adrenal Tumor, I had them trade out the crib for a twin-size bed because it was easier for me to keep her in the bed and not all twisted up in all of the tubing if I just laid in the bed and slept with her each night.  So, she told me that is what she wants me to do this weekend.....we'll see.  She may want the whole bed to herself with no one even touching her after this surgery is over!  I'll keep you posted!  I'll probably get kicked to the couch!

Monday, January 10, 2011

PET Scan Tomorrow

Tomorrow, Tuesday the 11th, Morgan will have another PET Scan to see how well the Chemotherapy treatments worked on her cancer cells.  Our appointment is at 9:30 in the morning.  It is supposed to take about 2 - 2 1/2 hours.  We won't get the results until our Wednesday afternoon appointment with the oncologist, Dr. Beck.

Thursday we have a couple more appointments and then Friday morning we will check in to Huntsman Medical Center for her surgery.  There is one other young lady having the same surgery as Morgan on the same day.  We were told that she will most likely be spending 2-3 nights in the hospital.

I'll let you know more as things progress.  For right now just keep Morgan in your thoughts and prayers....and wear your PINK!!!