Sunday, May 30, 2010

Knowledge is power, but sometimes ignorance is bliss!

Today we got the first batch of real answers.
Today was the first day of real tears.

We talked in great length with our oncologist about the process of things and the roles various people will play in the process as it unfolds. Although much of the process will be determined once the pathology of the biopsy tells us exactly what he has, some anxiety was relieved as we were given some possible scenarios. This helps us understand why we sometimes have to wait and when some of those long waiting periods will occur.

We also got to meet with our pediatric surgeon, Dr. Greenholz. He was great and spent quite a bit of time with us in the hallway discussing what he saw in the CT scan.

What we learned today:

1. Hospital internet is not reliable
2. The tumor is very large (much bigger than a grapefruit)
3. It is metastatic (spreading)
4. It is almost certainly malignant
5. Malignant cells are also in his liver
6. Several blood vessels are running through the middle of the tumor, and the tumor also encases his aorta and renal vessels
7. They cannot try to remove it because of #6
8. It probably originates from his kidney
9. He will very likely lose his left kidney
10. The biopsy surgery will happen Tuesday or Wednesday ( I’d put my $ on Wed.)
11. During surgery they’ll insert a broviac (sp?)—a central line which will have 2 tubes coming out of his chest to administer the chemotherapy and draw blood
12. He’ll probably start chemo on Friday
13. The goal of chemo is to shrink the tumor as much as possible, but at some point he will have a major surgery that will try to remove the remaining tumor. That will be a major bridge to cross when we get there.
14. We'll have a lot more info and certainty once the biopsy pathology comes back (know what kind of tumor specifically, treatment plan, etc)
15. The only thing that may keep William from coming home between now and the biopsy is his high blood pressure
16. William rocks at Battleship and enjoyed his visitors

We are holding up well, trying to remember to eat once in a while and understand that this is just the beginning of a very long road. Words don’t even come close to being able to express our gratitude for the outpouring of prayers and support in our behalf. We can’t respond to all emails, calls, or texts, but we do get them and appreciate the messages. Your overwhelming support makes a big difference.

We feel an amazing sense of peace and comfort from our faith in Jesus Christ. We know that He is watching over William and our family and our needs and capacities are known.


  1. Thoughts and prayers with you guys!

  2. Julie, I'm amazed at how you have your head wrapped around this. William has the most amazing mom/advocate on his team! Thanks for the update; you have all been in our constant thoughts, conversations, and prayers. We sure love your great family and, along with so many others, are anxious to help in any way you may need, but also don't want to overwhelm you. I hope you won't hesitate to ask for help (when you're able to stop long enough to figure out what you may need), as anyone from your village would feel blessed to be able to lighten your load.

  3. Thanks for the great posts. You are a great combination of your witty, smart daddy and your pioneer, smart, super capable mom. And you are married to a prince. You are all a part of every prayer. And all those little 4th gen cousins with their amazing innocence and faith are praying. We love you so much.

  4. Julie and Ryan-
    We've shed a few tears this weekend too. Luckily for us they were while in the company of JH, Glenn and Larry and Romanie. We'v also phoned Dorace and Molly. Joys and worries are best shared. I'm worried about all 7 of you, and will hope this next few days will go by quickly til I arrive. MUCH love and MANY prayer!

  5. Dear Julie, I remember in the not too distant past that you told me we all get to take a turn at being the one being served, when I was complaining that ours seemed to be a saga. You said that angel friends are waiting to serve us. I would never describe myself as an angel, but I am so willing to do whatever you might need. You are in my constant thoughts and prayers. Your service to my family has been invaluable and consistant, whether it be an ear or taking Lincoln for hours at a time. You rock.

  6. Julie,
    It's a priviledge to be part of your village! I'm good at boy playdates and I know my way around Sutter Memorial very well. Just let me know what I can do! Our summer schedule is open for lots of playdates. Besides, it's past time for Sorin to get a playdate with "your best friend". :)
    Some advice our pediatrician gave me that I thought you might appreciate..."It' a marathon, not a sprint." But, to that I would add that during this special run there are lots of hands reached out waiting for you to pass them the baton. That includes my hand too!
    With love,

  7. milmil stands for mother-in-law mil, my identity on the blogs our children have created. Bruce and I, and all our children send you all our love, hold you in our hearts, keep you in our thoughts and prayers. We will be joining your fast on Wednesday. Thanks for sharing on the blog, and letting us join your village.
    Cyber hugs from Cheyenne to each of you,
    Gloria & Bruce

  8. William and you all will be in our prayers! Calvin is sending extra strength prayers your way. We love you guys! Hang in there!

  9. Please let me know when you know of the pathology type as I can run your chemo and treatment plans by several additional panels of doctors. Our prayers are with you. Love,

    Cell 314 249-7701

  10. Our prayers and thoughts are with you. We will certainly be doing a special fast for Will in our home on Sunday. It reminds me of the great uncertainty we experienced with Gracie the first couple of years of her life, and seeing her revived on two occassions. Our favorite hymn at the time was How Firm a Foundation. The Lord, the gospel and all of your ward frinds and family are here to be your foundation.