Thursday, April 30, 2015

Ewing Sarcoma

So we found out a lot today. 

As one could say, "we've been through the ringer." Between information, statistics, and an overwhelming battle plan - one could correctly suspect that we are spent. 

Now I sit here trying to summarize the helpful, "encouraging," useful information to share with you all (my incredible support team... that's you!)  ;-)

First of all, it is a question no more- I have Ewing Sarcoma.
What is Ewing Sarcoma? 
It is an aggressive, rare (1% of all pediatric cancers), type of bone cancer. It forms within the bone marrow and then "breaks out" forming into a tumor of soft tissue. There are roughly 200 cases of Ewing Sarcoma diagnosed within the US every year. 

I have just joined the 200.

So where do we go from here? I was transferred to the UW American Family Children's Hospital as of today. The best news of all is that the cancer is localized within and around the tumor. However, I will be having more tests run this coming week. The following Monday I will be going in to have my chemo port installed, a bone marrow biopsy done, and will begin my first chemo treatment that evening. 

So here's the real hum-dinger.

I expected maybe two or three months of chemotherapy. But I was slightly off in my calculations. According to my Oncology team, I will have 36 rounds of back to back treatment. Within these rounds, 8 of the blocks will vary from 5 days of Chemotherapy - to the smaller treatments where I will be held at least two days for one day of treatment. My doctors advised me to plan for a year of chemo... between Type One Diabetes, low white blood cells, low red blood cells, low platelets, low blood sugars, high blood sugars, high fevers (you get the point) ... it will not be a smooth 40 weeks as planned. Those 40 weeks would have to be flawless. 

So here's the analysis: this cancer can be beaten. If we nip this in the bud, I could possibly have this behind me for the rest of my life! According to the PET scan, there are no signs of spreading away from the tumor. This is a big answer to prayer! Yet again, we really won't know the full effectiveness until they do further testing in five years.

This cancer is also extremely aggressive, mean, and a lot like Type One Diabetes... selfish. In order to kick this thing, we have to smack it around with some serious and lengthy chemotherapy.

So in a way there is good news, and in a way there is bad news. Depends which side of this coin we are gonna look at.

Thank you so much for your prayers! They are deeply appreciated.

(Many friends have asked to help at this time. My Aunt Jenny has set up a fundraising page to off-set some of the medical expenses that are quickly mounting. Thank you so much. Click Here

Tuesday, April 21, 2015

Cancer: The New Battle

I have so much to be thankful for . . . yet a long road ahead of me. Though I would love to expound on everything and completely delve into the details of my recent diagnosis, I am going to attempt to make this short, clean cut, and as simple as possible.

Pretty much, a week ago I went to the doctor's office for a suspected labrum tear. I had been having severe pain since December. To make a long story short- I am facing something far more difficult than I had anticipated.

The doctors found a large mass in my shoulder. The doctors are looking at this as an aggressive type of bone cancer- most likely Ewing's Sarcoma. Although there are three different types of cancer they are considering, due to my age, the size of the mass, and the aggressive nature of this mass- Ewing's looks to be the most likely diagnosis.

Today we were able to develop a game plan. This Thursday I will have my PET scan to determine whether the cancer has spread, or is contained. Next Monday, I will be heading back up to have a surgical biopsy. My doctor will remove both a section of my bone and the mass. They will also be installing the port for Chemotherapy during the surgery. Hopefully we will have the results of the biopsy by next Thursday. They will be treating the cancer with radiation, Chemo, and surgery, chemo again- and finally reconstructive surgery to repair the cancer-eaten bones. (If it is positive for Ewing's Sarcoma)

So what do I say... How do I process a diagnosis of an aggressive cancer only 2 years after my diagnosis of T1D? How do I cope with this? 

Honestly, at this moment, I can't. All I can do is depend on the strength that only God supplies. I'm in a blur... I'm obviously still in shock... And I'm still scared to death at the thought of trying to balance this all along with Type One...

Yet I think about a few verses that have really comforted me during these times:

"Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;
Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God. 
 For as the sufferings of Christ abound in us, so our consolation also aboundeth by Christ."

 II Corinthians 1:3-5

God is allowing these trials in my life for a definite reason! I know that I can trust Him even when my life is turned upside down.

I would ask that you please pray for me as I will be starting treatment very soon after the biopsy results come back. 

Also please note that I have comfort in these three things:

1) An amazing support group of praying friends all around the world
2) The fact that I have it, and not anyone of my siblings (I wouldn't want it any other way)
3) The peace that God is providing for me at this time

I promise to keep you updated! Thanks again for all your kind words of encouragement and prayers!

With much love,