Setback...

So once the drains were taken completely out...Morgan began having tissue expansions.  The first expansion was only 30 cc's and the second one given a week later was for 60 cc's more.  Things went really well and we thought we were on the road to recovery.

At the next expansion appointment, Morgan was putting on the hospital gown and I looked over to help her and saw that her right side was about 1/3 to 1/2 larger than her left.  It was also bright pink.  Vicky, the nurse, came into the room - took one look and said, "I hate to tell you this darlin', but I am NOT going to stick that with a needle...."  :-D  She told us that she was going to tattle on us with the surgeon and off she went.

Morgan and I just looked at each other and wondered what else could happen to us along the way! It seems like we take two steps forward and one step back.  We have been planning to take a respite vacation so we can truly rest and recuperate from all of the stress and demands of our lives the last six months or so.  We thought we had given enough time before our planned date of departure for expansion and radiation, but any more delays and we weren't so sure if we could still make it.

Dr. Agarwol came back and took one look and sat down with his chin in his hand. (he doesn't say much, but this body language means he just doesn't want to say what he is thinking)  He asked Morgan how much she minded the size she is right now....because he doesn't really want to expand her any further!!!!  He also said that it is getting to be time to begin radiation....we are 8 weeks out from the surgery.  I asked him how long we could wait and he said he didn't really know, but we are there.

His final plan was to begin Morgan on heavy antibiotics to kill the infection that is obviously in her right side.  He wants to see us at the end of the week for a follow up and will decide then if he will expand her any further....not the best news.  Also, if the antibiotic doesn't make a great change in a day or two, she will be getting a port with IV antibiotics.

To give you an idea of what we are talking about in reference to size...the surgery removed 590 from the left and 530 from the right (after the original lump [about 60 cc's] was removed).  The surgery replaced 300 on each side and now we have added 90 for a total of 390....not quite what she started with but still more than some girls were blessed with originally!!

Well, that was a week ago....(time flies when you write waay after the fact!)  We went to see the doctor on Friday to check the infection.  The pink is gone, but the side is still obviously larger than the other and has small pockets of fluid you can feel.  Dr. Powers came in and expanded the left side another 30 cc's so they would match due to the inflammation....(I wonder what will happen when the infection is gone and the right side goes back to what it was...).  Dr. Agarwol told us to make an appointment to begin the radiation simulation next week (the appt. is on Tuesday the 15th).  Dr. Agarwol doesn't want to do any more expansions...period!  However, he did say that when he does the reconstruction this summer, that he can stretch it up a little bit from where it is. (That is good news!)

At this point we aren't sure what to expect from the radiation simulation.  Apparently it is just that...they pretend to give her the radiation to check on specifics of the location and amount.  They told us that this is when she will get the small tattoos (greenish in color) to mark the spot.  Radiation is the part of all of this that scares me the most!!!  I know it isn't going to hurt, or necessarily cause Morgan to feel sick in any way.  That isn't what makes me nervous...

Radiation can cause cancer!!! Ironic isn't it?  The very thing that will save her life from this cancer... could very well cause a new cancer to form in her body that cannot fight cancer....EVER!!!  It has been a painful decision for me to understand.  Most people fear the chemotherapy more than the radiation because it is poison which is injected into your body to practically kill it before they stop.  Who wants to inject their child with poison?  Well, as far as that goes, radiation is much more harmful to a Li-Fraumeni patient than just about any other thing on this earth.  Any amount of radiation that Morgan is exposed to for the rest of her life could very well start a new cancer growing inside of her.

You know when you are pregnant and you aren't supposed to take anything...not even an aspirin in case it does harm to the baby?  Then you go into the hospital to have the baby and the doctor prescribes drugs like morpheine to get you through the birth and you wonder how that works...what is happening to the baby?  Well, Morgan is not supposed to have ANY radiation for the rest of her life....not even dental x-rays unless absolutely necessary.  Now we are going to radiate her body five days a week for five weeks!!!! 

Just a little bit that this mom needs to remain calm about.....so, for those of you who tell me that I should be so glad the worst is over.....just wait until after her reconstruction surgery to tell me that.  I am so very grateful for the results we have received.  Morgan is cancer free!  She beat this cancer right into the ground, but we still have a tough road ahead of us...Dr. Agarwol chose Friday to ask us about the reconstruction and give him an idea of where we are headed.  Morgan has chosen to go for the lat-muscle option.  This will mean that she will have surgery on her back and front! (where is she going to lay down?)  They will wrap part of the lat-muscle around under her arm and roll it up to create a breast.  It really is amazing...but still very major and very unnerving, for me anyway.  I promise to write more about that as it happens.

Thank you all for checking the blog once again to see the update.  I apologize for not writing more, but there isn't that much happening every single day.  We appreciate you for staying interested in us and what we do.  We love you for caring and praying for us.  We feel the prayers and the many blessings you all bring into our lives.  We were talking the other day about how difficult it would be to not have all of those blessings.  What it would feel like to not have the strength of others with us every single day.  Please know that it is not going unnoticed or unappreciated.  We have some thank yous to write still, but please don't feel that what you do for us is overlooked or taken for granted.  Some have prepared meals, written notes of encouragement, visited, brought treats and meals and gifts, or even generously donated money to our cause.  Thank you, thank you and thank you!!!

Drains Finally Gone!

After five trips up to Huntsman in early morning rush hour traffic (bleh!) Morgan was finally able to have her last drain removed!!! She is free!  (six weeks is a long time...) When we arrived the nurse took Morgan's pulse.  She asked Morgan if she felt okay or if it felt like her heart was going to run out of her chest. I asked what her pulse was and she said 145.  I was like...."no, her pulse...not her weight!"  She said, "I know!"

The doctor came in all concerned with his head nurse and they retook her pulse by hand and it still was 122.  They started murmering about things like EKG and "i-mac."  Soon two more people came in and hooked Morgan up to the EKG which was fine, but her pulse was still 100.  Been trying to upload a picture for this but for some reason it won't work....

She got a total of 30 cc's with a needle stuck straight into her chest.  It found the right spot by using a magnet which lined up with a magnet that is in the port of her expander.  It is all quite interesting.  On March 1st, one week later, she received another 60 cc's.

We have about 4 more of these procedures planned, then we can begin her five weeks of radiation by the first of April.  Some day, some way, I will get better at keeping everything up to date.