Thursday, December 1, 2011

Day 2 (Ryan)

Here we are at Day 2. I woke up this morning, rubbed my eyes, looked around, and we're still in the nightmare. I wasn't able to sleep it away. Normally when I wake up, nightmares end, and I go about my day care-free. This one is here to stay. Dammit.

We had an echocardiogram (ultrasound of the heart area) today, and then later yet another ultrasound.

Lots of doctor meetings today. Helen Devos Childrens Hospital is currently forming a massive surgical team to give Sweet Baby Mallory a radical surgery. It is amazing watching multiple surgical teams combine efforts to provide Mallory with the best care available.

The echocardiogram this morning gave us good news; there does not appear to be a third tumor on the inferior vena cava. The bad news is that the stuff they saw was actually the right-adrenal-gland tumor pressing into the IVC. This is bad because the right-side tumor is more intricate than we had thought yesterday. The echo showed that the tumor was only pressing into the IVC, rather than growing into it.

The pediatric surgeon decided to order a third ultrasound to study the interaction between the tumor and the IVC once more, so off Mallory went for another test.

She is being such a trooper through all of this. The Facebook response has been overwhelming. We really, really appreciate all of the kind words and support from everyone around the world. There are reports of literally thousands of people praying for our sweet sweet baby, and I thank you all for each one. Those prayers are giving Mallory the strength she needs to ride this ride.

The third ultrasound gave us a bit of a stunner- the right adrenal tumor is actually growing into the IVC. This means they are becoming one, and separation becomes much more difficult.

Tomorrow is where rubber meets the road, tomorrow is surgery day. They are planning on putting Mallory under around 1:00pm tomorrow. She will first go in and get her bone-scan done to look for cancer spots in her bones. She will then get wheeled into the operating room, where she will have bone marrow drawn from her hip bone. They will then install a central-line (broviac) for use with future medicine delivery (i.e. chemo). Once that is all done, they will start open surgery on her abdomen. The plan is to remove the entire left-side adrenal gland, tumor included. At this point they are not planning on removing the right side tumor, due to the complications with the IVC.

We met with a Endocrinologist today, too. With the removal of at least one of the adrenal glands, she will likely be on permanent hormone replacement drugs for the rest of her life.

I'm continually reading articles on the Internet regarding Neuroblastoma, and some articles on being the father of a child with cancer. There are lots of good resources out there, and I hope to make use of as many as possible.

I can read-up plenty, but sometimes the little things catch you off guard. The nurse just came in and talked with me about tomorrow's surgery, and what I need to know. She then pulled out a consent form for blood transfusions. The hospital is currently getting a stock in of blood that matches her blood type. They are specifically ordering blood that matches my daughter. A lot of blood, and they are ordering it the day before a massive surgery.

Dear God, please be with the surgeons tomorrow. Guide their hands and their minds to do the best work possible. Please let them have a productive surgery, and let Mallory come out of this stronger than ever.  Oh, and please God, if it be thy will, please let the doctors leave all that extra blood on the shelf. They won't be needing it. Amen.


  1. I have no words that can make this any better for youo all - and I cannot imagine what you must be feeling, But please be aware that There are people all over the world praying for Mallory at this time.
    As a friend of Laura's I have watched Jill and Mallory enter the world (via photo's) and when I heard this news I cried and I was angry that this could happen to such a sweet little girl..
    Stay strong guys, and never be afraid to ask for help everyone is with you on this and although I cannot be there in person I am with you all in spirit....
    God speed Princess Mallory - Love from Noelene in South Australia xxxxxx

  2. Hi Ryan, my name is Alice and I'm a friend of Christy Kennedy's. She told me about your daughter on facebook asking for prayers. I have told your wife about my son's cancer back in 2001. And guess what his name is??? Ryan!!!! You sound like a great guy just like him! I know what you and your wife are going through. It's a nightmare at best. But you will get through this and Mallory is going to be fine. You've got to believe that! I believe the power of prayer cured my son and got our family through his horrible ordeal. And the same will be true for Mallory and your family. Hang in there, you're in for the ride of your life, but happier days will be in your future soon. In God's love, Alice