Wednesday, March 23, 2016

Journey On

Yesterday morning, Dr. Shami from Huntsman called me.  He reported that Shelbie's biopsy was negative for Lymphoma or any severe infection like Tuberculosis.  The most common reason for enlarged lymph nodes to the extent Shelbie has them, is cancer, of course.  The less common reason is massive infection.  Cancer and infection live on sugar so when the radiated sugar of the PET scan lit up most parts of her body, the assumption was cancer.  How could someone have in infection for a year and not know it?

I didn't really know what to say when he told me.  I think I may have said, 'Are you kidding me?' and he said something like, 'I know, but I'm not kidding you.'

I'm quite certain he has never before spoken to a mother disappointed with the news that her daughter didn't have cancer.  I'm quite certain he hasn't experienced that disappointed feeling himself, many times.  He was perplexed and very concerned.  Shelbie has all the symptoms of cancer, clinically.  Even the surgeon had doubts it was anything but cancer after she pulled that golf ball sized node out.

When our doctor came in the room, I asked him if he had spoken to Dr. Shami and he hadn't, so I told him she was negative for Lymphoma.  Even he was disappointed!  What the heck?  It's the strangest feeling in the world that the one disease all human kind fears, was the easy and preferred answer for us.  A hard and horrible answer but cancer comes with treatment.  It comes with all sorts of information, funding, research...answers.

We have no answers. No treatment.  Now, we face the reality that something is happening to Shelbie and her organs are taking the direct hit. In my finite mind, I don't understand how a human being can function when every organ but maybe one, is effected with disease and unknown lesions.

I'm not sure if I would call it denial, ignorance or something else but even I didn't understand the seriousness of this situation until we arrived at Huntsman.  It's been among the top 5 hardest things of my life. On the way down, I seriously thought that they would start a new med, the hives would be gone by morning and we would be home and back to our somewhat happy life by Thursday.

Her last IV infiltrated on the ride down, they took the coban off to flush it and her arm was hot, swollen and full of hives. (Although...we aren't entirely sure these are even hives anymore but something else called Cesearea Disease)  They pulled it but had to start another one.  As one nurse was searching for a viable option, the other asked about the filtered IV? HUH?  I've never heard of a filtered IV.  She went on to explain that since Shelbie has holes in her heart and lungs, she should never have an IV that isn't filtered because it can cause a stroke otherwise.  The more I sit here, the dumber I feel.  I can take no credit for keeping these kids alive for as long as they have lived.  I have obviously been missing some critical points to their care. A testimony to me that we all live out our numbered days.

Tomorrow, they are sending in the Pic Team to ultrasound her arms and possibly start a Pic line or they may have to resort to a Port.  I hate both options.

It's a difficult situation.  Our first two hours here were quick fire questions and a host of physicians, fellows, residents, nurses, pa's, aides, students...All coming to see the most unbelievable case of hives and infection many have ever seen.  Poor Shelbie.  This surgery was in a delicate and personal place.  Being the modest and shy family we are...this alone has been traumatic.  To be exposed to so many people, literally circling her bed.  I felt sick and at one moment wanted to scream and push them all out of the room.

I felt so strong driving down here, even had the most amazing moments with my Father in Heaven and it seemed to slip away so easily and swiftly.

But, despite the difficulty. we will journey on.  I am continually telling my kids to be open to the possibilities instead of placing our own judgments on something before God gives it meaning.  I need to listen to my own wisdom.  Without a doubt...God has led us along.  I can see more clearly the reason for each perplexing thing we have endured.  We will remain steadfast and instead of murmuring, we will cry out for divine help...and...it will come.  I know it will.

Now...if I could just stop being so emotional and human...it would really help.

I feel the need to end on a humorous note...My boys are shoppers.  They love their clothes.  They can spend hours shopping.  Shelbie and I don't like shopping.  We hate shopping. However, Sam came with me last night to find Shelbie some comfortable clothes to wear in the hospital since we forgot to pack her stuff! (I know, there goes mother of the year award! Duh!) We passed a store we both like and in frustration I said, "I just want to go in there and spend an obscene amount of money and not care.  I'm so tired of caring.  What do you say?  Let's do it Sam! It will be so much fun!" It was shear sarcasm.

He stopped and said, "MOM!  Stop talking like that. You need to be responsible with your money.  This is not an appropriate time for a shopping spree. Do you have any idea what this is going to cost you? More than we have! Gosh! "

So, Mr. Reasonable saved our budget.  Sam is no fun at a time like this.


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1 comment:

  1. Heather really enjoyed spending time with you all.

    ReplyDelete