Sunday, November 20, 2011

Swept Off Our Feet

... and making a 180 degree turn.

Thursday night:
  • Increased difficulty breathing.
  • Put on oxygen since it was assumed low oxygen sats were due to pressure of the tumor on the lungs and diaphragm.
  • Hemoglobin dropped again and anticipated another transfusion Friday due to possible bleeding into the tumor.
Friday morning:
  • Still spiking fevers, but blood cultures still negative.
  • Needed another blood transfusion, but all other labs stable and good.
  • Planned to start chemo that night or more likely on Saturday morning.
  • Chest x-ray to address breathing issues. (Tuesday scans showed chest/lungs were clear).
Friday noon:
  • While walking out of room to go to x-ray, informed that after consultation with surgeons, surgery is scheduled for Tuesday to remove as much of the large tumor as possible.
  • Surgery decision made due to bleeding in the tumor for the second time (happened after chemo round 1 too) and greatly increased risk of a large bleed occurring with next chemo cycle that would be too big to manage with transfusions. (see below for more detailed explanation).
Friday afternoon:
  • Surprising x-ray results showed left lung completely surrounded by fluid and almost no function in upper or lower left lobes.
  • Surgery to insert chest tube scheduled for that evening.
Friday night:
  • Chest tube procedure successful.
  • More than 500ml (half a liter) of blood and fluid drained immediately.
  • Post surgery x-ray disconcerting as almost no improvement in lung function evident.
  • Went over CT scans from Tuesday very carefully with the surgeon examining the tumor images.
  • Overwhelming.
  • 3 tumors in abdomen.
    • Very large one in upper left quadrant of abdomen.
    • Smaller, more dense one just below it and extending into his pelvis. (non-operable for now)
    • Another dense one in the bottom of the pelvis. (non-operable for now)
  • Moved to PICU for continued observation.
Saturday afternoon/evening
  • Hemoglobin dropped again. Double unit transfusion.
  • Chest x-ray reveals no improvement in left lung.
  • CT scan to figure things out a little better.
    • Left lung: suspected major infection and minimal capacity.
    • Lower right lung beginning to gather fluid.
  • Becoming critically important to restore lung function or he won't have enough lung capacity to undergo surgery. (need more than a single lung to provide O2 during extensive surgery).
  • Intensive respiratory therapy begins.
  • Chest x-ray shows improvement. Left lung shows pockets of air opening up.
  • Clotting levels are high meaning his blood is not clotting well enough.
  • Received fresh frozen plasma to aid in clotting. This will be good in preparation for surgery.
In depth explanation:

His tumors began as fairly solid masses (more or less). Chemotherapy gradually kills the cancer cells. When this happens, sometimes the tumor begins to shrink in on itself. This is what William's tumor did last time and what the two smaller tumors appear to be doing. The large tumor is not behaving so nicely. As the neucrosis (dying cancer cells) is occurring they break apart from each other. This make the tumor become less dense (think of rotting fruit), but the tumor begins to swell as the cells move apart. The tumor becomes inflammed as the body tries to go in and repair/heal. Remember that since the body produced the cancer cells, it does not recognize it as a foreign body. As this is happening, fluid is released from the cells and is also produced by the body. Also, tumors always have a blood source. As the cells die and fall apart, the blood no longer has a destination, thus the bleeding. Often it will dry up on its own and sometimes it doesn't. We do not know if the blood supply to his large tumor is a large vessel or several small vessels. Since the bleeding has occurred after both rounds of chemotherapy, he is at a greater risk of developing a larger bleed with continued chemo that could not be rectified by transfusion. This would occur when the chemotherapy continues to weaken the make up of the tumor and possibly perforates the blood vessel and he could suffer from a massive internal bleed. So the plan is to remove as much of the large, swelling tumor as possible as long as we can get him stable enough.

Monday will be the pow wow with the surgeons as the surgery plans are made and his current state is assessed. Please pray for his lung capacity to improve and sustain him and for the doctors to make the right decisions and be skilled in the surgery process.


  1. Oh Julie, you guys are in our thoughts and prayers as well as your team of doctors. Lots of Love! The simonsens

  2. Oh Julie. I'm so sorry. I love you and we are praying will all our might and faith. Xoxoxo

  3. Dear Julie, We are praying for William's lung capacity to improve. Thinking about you always, this is simply gut wrenching...

  4. Our faith and prayers are with you, William, and his doctors. We LOVE you.

  5. Julie: You all are always in my prayers, but I will be especially prayerful all day today! I will also call Stanford and see about donating my blood and getting it sent to your hospital, if possible. I will pray for inspired discernment for William's doctors, surgeons, RNs/other prof. AND you and Ryan, as William's parents! I just LOVE your family and will earnestly pray for all of you. You have all my love and support!!! (((HUGS!))))

  6. Your names are at the temple and we are praying for your family and everyone that is caring for William. Love,
    Jennie & Dave

  7. Praying that they will be able to do surgery and that it will go well. Yay for killing off the tumors, but praying for his lungs.

  8. You are all in our prayers and I will fast for you too. May you all be guided in decisions, procedures and may progress swing upward. Be strong my friends! Much love and prayers! Soeur Dalby

  9. You are in our thoughts and prayers. Just know that there are ao many families praying for you and that love you all.
    -Heather and Matt

  10. I am speechless julie! I hope today, monday, there will be some more uplifting news and that the other tumors become opetable as well. We would be happy to take your kids for playdates ..... Katja zarco

  11. Julie and Family you are in our thoughts and prayers. We will be praying for William!

  12. We will continue to pray for William and your family as well as the doctors, Ron & Leslie

  13. I wish that there was more that I could do. You are in my thoughts and prayers and I just called the SLC temple and put your family on the list. Stay strong and do your best to take care of yourself because your family needs you!!! Thank you for your example of love, patience and faith! Amy Palmer

  14. Julie, I cannot imagine what going through this could possibly be like! You are such a strong mother and I know the Lord has sustained you and your family through this. Many thoughts and prayers are headed your way today! Good luck and may the outcome be positive :)

  15. Murdocks All,

    We are praying hard for you, the doctor's and especially William's lungs. We love you so much.

    The Calhouns

  16. The prayers of the righteous availeth much...
    praying, praying, praying...


  17. Psalm 121
    1I will lift up mine eyes unto the hills, from whence cometh my help.

    2My help cometh from the LORD, which made heaven and earth.

    3He will not suffer thy foot to be moved: he that keepeth thee will not slumber.

    4Behold, he that keepeth Israel shall neither slumber nor sleep.

    5The LORD is thy keeper: the LORD is thy shade upon thy right hand.

    6The sun shall not smite thee by day, nor the moon by night.

    7The LORD shall preserve thee from all evil: he shall preserve thy soul.

    8The LORD shall preserve thy going out and thy coming in from this time forth, and even for evermore.

  18. We are pleading with the Lord, as we know you are, for everything that William needs to fight this and win this battle. We love you all. Diane & family

  19. Praying for you always. Mitch and Avery

  20. Oh Julie-
    I've been following your blog and have been so very touched by the faith and courage your family has had. Please know that you and little William have been, and continue to be in my prayers. I cheered when he did so well earlier in the fall, and I cry with you now.
    I've loved your family since Boston days when you were a baby, and pray for strength, courage and discernment for all.
    Wendy Jones

  21. My heart goes out to your son and his whole family. All of you are in my prayers; it doesn't matter that we don't know each other. We're all brothers and sisters in the gospel.
    May all be well and peace be yours.

  22. May you feel God's comforting, healing presence with you, giving you strength and courage as you face each new day. We lift William up in our prayers especially right now...may he continue to have the strength to fight back.
    Just reading all of these comments is very are surrounded by a cloud of witnesses who are holding your family up.