Wednesday, December 5, 2012

Update on Paul...

I brought Paul home from the hospital today.  Needless to say, it was nice to get him out of the hospital!  The doctors were amazed at how well he did.  They told us that he was not the “norm”…that many times this turns out to be “catastrophic”…not sure exactly what the doctor meant by that, but I am just thankful he is doing better.

We saw so many different doctors while Paul was in the hospital.  There was one main doctor assigned to us, but we were visited by handfuls…it was kind of weird to have so much attention…I guess that’s what happens when you are at a teaching hospital.  We actually did not see our oncologist until he came up this afternoon before we left.    It was nice to see his face.  For some reason, I felt more reassured as I spoke with him.  He told us we should (hopefully) know the results of the biopsy by December 14th when we go back for Paul’s next appointment.  He told us that this problem he had could have been caused by the biopsy, but it also could be related to the cancer.  Because of that, we may be seeing future problems with the bowels.  We will deal with that if it comes to that…not even going to think about that right now…

Anyway, Paul’s oncologist told us if his cancer is not compatible with the trial drug they are currently offering at Huntsman, he may be able to refer us to MD Anderson in Houston, or somewhere in Detroit.  They also have some trial drugs that may work.  I guess they are both on the cutting edge of cancer research as well.  

If Paul is not eligible for any trial, his oncologist told us he thinks we should reconsider chemotherapy for palliative reasons.  He said all studies show that while the chemotherapy will not cure him, it will make him more comfortable.  After what we experienced this week, Paul is definitely rethinking about having chemotherapy.  Originally, we said no, because we didn’t want to make Paul’s life more miserable.  He told us the chemo they would use this time is not as brutal as the first ones he had.  He said that people seem to tolerate it much better with less side effects.  He also told us the studies are showing people are living 3–6 months longer with this chemotherapy.  We are only considering it because Paul’s type of cancer can be very brutal on the bowels…the chemo will help slow down the growth and limit the pain.

We also asked the doctors about doing TPN.  None of them thought it was wise at this time.  They said the risk of infection, and liver and kidney damage was too high.  So, I guess we will just try to get as much nutrition as possible via mouth.  It gets to be very frustrating, but we will continue doing what we can. 

Last night as I was putting the kids to bed, Hailey had a complete meltdown.  She was crying about how much she missed her dad.  She asked me why he had to get cancer.  She told me she will miss his kisses on her cheek when he dies.  It was very heartbreaking…I had to be strong…I could not cry…I told her that we will be just fine….that daddy will be here for awhile…that we just need to enjoy all the time we have together. 

After I left Hailey’s room, I went to my room and started to sob.  I never dreamed this would be a part of our lives.  It is so hard to comfort your children when your heart is breaking too.  I have to be strong for them. 

When I got home from the hospital on Monday night, I found a letter Hailey had written to Santa.  This is what is said:  “Dear Santa,  My family wants to go to Disneyland for spring break.  My dad wants an R.V.  I want an American girl and Sophie wants a new bike also mom wants my dad to be with us for next Christmas.  I will not forget Zoey she wants a dog bone.  Love, Hailey  P.S. Make it snow!”

I started to cry as I read the part about  me wanting dad to be here for next Christmas.  Who knows maybe I will get my wish!  Anyway, the whole R.V. thing cracks me up…we have talked about getting a trailer for the past few years…Paul told the girls he was going to ask Santa for one this year…big mistake…I keep trying to tell the girls Santa cannot afford that…we told them we would try and rent a motor home to go and see some things that daddy wants to see…Hailey is still convinced that Santa will bring one…

We actually are trying to get to Disneyland a lot sooner than Hailey realizes.  We don’t want to wait until spring break…we will see what we can work out!

I am glad to have my honey home with me.  It was so hard to leave him at the hospital.  But when you have children they need you too.  It is like being pulled in many different directions.  I feel exhausted!  Of course, it doesn’t help that our dog decided to wake me up the last two nights to play at 1:30 in the morning.  I only ended up getting a few hours sleep both nights because of her.  She kept whining to wake me up to pet her.  Then she wanted to play…little demon dog.  I actually do love her, but I was not very happy with her.  I guess I have to remember she knew that something was going on and her schedule was messed up too…It is like having another child in the house!

I may not thank everyone personally for all that they do, but know that I appreciate all the support and love given to my family.   I feel your prayers!

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