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.

Saturday, May 29, 2010

And now we wait...

I assumed I would eventually join the blogging world, but I didn't know how long I could hold out or what would actually drive me to become a blogger.

I'm officially a blogger.

This blog is to keep dear friends and family up to date with William's recent health situation and document our growth as a family. We also acknowledge we are not in this alone and recognize the villages that are caring for us, supporting us, and loving us. We are so thankful for our villages of doctors, nurses, family, friends, church members, neighbors....

So here's the rundown of what has recently occurred and what we know at this point.

A month or so ago we noticed William's upper abdomen seemed a little bloated or distended. It looked odd since the swelling was just under his rib cage, but around his waist was regular, skinny, Will. I thought it was probably just constipation, so I paid more attention to his bowel habits and tried to remedy any problems. Everything seemed completely normal. About 1-2 weeks ago, when he was getting out of the bath, I looked again and there seemed to be a definite large lump in the upper left quadrant making me more suspicious of something other than constipation. Ryan and I decided we should call the Dr. It was the weekend so I put it off and then started to second guess myself since he had no symptoms: no pain, no fever, no change in habits, etc. Yesterday morning, Friday, I decided to just call the Dr. and schedule an appt. so any anxiety I had could be put to rest.

At the pediatrician's office, Dr. Lloren agreed that something was abnormal and sent William for a broad panel of blood work and x-rays. The pediatrician didn't notice anything remarkable in the x-rays, so we went home to wait for the blood and radiology report. Within 15 min of arriving home, we had a call with the results. Something was not right and they wanted him to come right back for a C/T scan. The list of suspected problems was not good. We turned around and went back.

William was a trooper with the IV and was thrilled when the technician let him see a picture of his x-ray with his bones, lungs, and heart. We returned home to wait for results. 30 minutes later we got the call.

William has a very large mass/tumor in his abdomen that is pushing some of his organs out of the way. We don't know what type of tumor, exactly how big, if it has spread, how fast it is growing, etc. The blood work shows something is not right, but nothing is conclusive to provide definite answers at this point.

We told all the children over dinner that night at The Old Spaghetti Factory. They all took it great. The only tears that flowed were from Clark when we told William he would have a TV in his room with a DVD player and a remote. Clark got very upset because he desperately wants a TV in his room! We hurried and changed the subject.

William was admitted to the hospital in the pediatric oncology unit early Saturday morning. We have met with the oncologist, but we won't know any more until the pediatric surgeon is able to come and perform a biopsy and the pathology is done on the tumor sample.

So far we've been at the hospital and waiting for the surgeon for 11 hours. He's in surgery. He'll see us sometime tonight or tomorrow morning. The nurses don't know when either.

I know we have a long, hard road ahead of us, but I wonder if this is the worst part: not knowing and waiting, waiting, waiting....

So while we wait, here are some pictures for your viewing pleasure.