Surgery on Friday

Lauren is scheduled for surgery tomorrow. Not sure of the time until the morning. They will remove some lymphnodes for biospy, remove the concerning section of bowel and take out the appendix. The capsule study didn't work. Xrays showed that the fake capsule didn't make much progress in 30 hours. They think it got stuck. The real camera capsule only has an 8 hour battery life, so it wouldn't go far enough to give us the info we need. We will have results from what the surgeon saw and did tomorrow, but no biopsy results until Monday. Best case scenario - 1. The damaged section of bowel comes out cleanly and Lauren's pain is eliminated (after she recovers from surgery). 2. The biopsy results are negative for PTLD. Any other scenario, we will just deal with as it comes and trust that Heavenly Father knows what he is doing.

I was awake this morning wondering how it would feel to worry for days if you have cancer in your body again. I can't even imagine..... PTLD = post-transplant lymphoproliferative disease, a form of non-hodgkins lymphoma (a cancer specific to transplant patients).

1st time - 6 years ago - excruciating pain that came on suddenly. CT scan showed a mass - that section of bowel was removed. No other spots of PTLD so no chemo.

2nd time - 5 months later - right after her 2nd transplant - she woke up in a pool of blood. A polyp of PTLD was removed. No further treatment because no other spots were detected.

3rd time - 5 years ago - came home one day and said it hurt a bit when she took a breath. Tests showed a tumor on her lung and some spots in her esophogus. Chemo took care of most of the PTLD, but a stubborn section of tumor on the lung was surgically removed.

4th time - July 2009 - excruciating localized back pain that kept increasing in intensity - CT showed very large lymphnodes, blood work consistent with PTLD. Chemo for 4 months. Scans have been clean since then.

We are waiting for the capsule to travel it's path, so the next step can be decided... a slow day.

Now we have a plan!

So, do you want the good news or the bad news?

Good news - we began the process of a capsule endoscopy. This involves swallowing a capsule with a camera in it that takes thousands of pictures as it travels through Lauren's intestinal system. Once it comes out the other end, we get a souvenir and the docs analyze the pics. They are looking for any abnormalities in the area of her pain. She just swallowed a monster-size fake capsule first. It is the same size as the camera one but dissolves if it gets stuck. This one takes up to 24 hours to go all the way through, then the real one takes about the same amount of time.

Bad news - this is the step before she goes into surgery. The MRE shows a thickened section of bowel, so the capsule test helps determine if the problem is just that one section or if there are other damaged areas of bowel. The MRE and CT also shows lots of enlarged lymphnodes, so we are back to suspecting PTLD (cancer). The oncologist isn't convinced that it is cancer, but a biopsy is the only way to confirm a diagnosis. None of her symptoms or blood work are consistent with her last episode.

The question remains - What day will the surgery be and when the surgeon goes in to take the biopsy, does she just do that or remove the section of bowel as well. Meanwhile, Lauren hits the pain button, sleeps and doesn't want to eat. She is frustrated and just wants the pain to go away, even if it means surgery.

A Few Long Days

Blair switched me out on Friday late afternoon. It is amazing what you can accomplish in 12 hours of awake time. I did tons of laundry, washed a few dishes, got 3 kids packed for their trip, played Boggle and Rummikub with the kids, watched some basketball with Megan, tucked everyone in bed, went through several days worth of mail, slept in my own bed, and showered in my own shower! Here they are visiting Lauren before heading to the airport on Sat afternoon. I was so sad to have them leave. The kids arrived fine, minus one suitcase which appeared in the middle of the night.

Lauren spent Sunday sleeping and having some fun visitors. Her hemoglobin is dropping again which makes her very tired. They tested it again this morning - I expect she will need another transfusion later today. The orthopedic doctors came to visit - the MRI shows no structural damage in her spine. It does show some swelling and a bit of a sprain in her lower back. Movement should help improve that - but she can't walk around much yet. The MRE shows some findings and she had an MRA this morning. Blood work shows she has an inflammatory process going on and the MRA will check for blood vessel problems. They see thickened bowel and lymphnodes, so we will wait to see how it is all interpreted and what the next step will be.

A few clarifications - GI doctors are gastrointestinal doctors who study the digestive system. (Why you would want to do that is beyond me!) An MRE is a type of MRI study that specifically looked at Lauren's abdomen.

Lauren update

I have received lots of emails asking for updates about Lauren, so here it is....

For those of you who don't know her history, Lauren has had 3 heart transplants (19 months, 12 years and 15 years old), cancer 4 times, 2 leg surgeries, and 4 abdominal surgeries.

She has had back and belly pain every day for about 7 weeks now. During that time, she was initially treated for one infection, then some GI scopes showed several other issues which she is being treated for as well. However, the pain continues, and, in spite of many tests, they can't quite figure out exactly what is wrong. She has been in and out of the hospital during this time and was readmitted on Tuesday.

She has had little appetite so has lost a lot of weight, is very lethargic, has needed multiple blood transfusions, and is now receiving IV nutrition. She has a team of doctors - cardiology, transplant, oncology, radiology, GI, rheumatology, pain team, surgery - all reviewing her case and trying to solve the mystery. With her history and being immunosuppressed, she is even more dificult.

She is feeling a bit more perky now that she has the IV nutrition, got some blood and has round-the-clock IV pain control. Meanwhile, the MRI's, CT's, ultrasound, xrays, and mountains of blood work are being analyzed and interpreted. She goes for an MRE later today. My guess and theirs is that what is going on is nothing normal but something rare.

Lauren is typically a fabulous student but hasn't had the energy or ability to go to school - she has been to 5 hours of classes since Feb 5th. Her track record is to catch up quickly, but we've had to drop a good portion of her classes much to her dismay.

Her heart continues to be amazing as it seems to be staying healthy. None of the results appear to show anything cancerous. The other great blessing over the past 2 months is her acceptance into BYU. That means she only has until August to get back to 100%!

Lauren is often told that through her experiences, she will touch the lives of many. This is often the case. I receive notes and messages from people who fast when they haven't for awhile; who study about and exercise faith in her behalf; who pray more diligently because they have a purpose in their prayers; who "try my best to be obedient as if somehow my obedience will give you strength."

Hopefully there are some who cross Lauren's path who witness miracles they would otherwise miss. We are praying that a diagnosis will be reached soon and that this will be yet another miracle.

It's a privilege to be her mom. I watch her bravely endure pain, pokes, frustration, test, bodily fluids, lack of sleep, exhaustion and disappointment with more courage and patience than I ever could.

Rachel, Megan and Nathan are incredible kids and have to endure a lot as well. They are leaving tomorrow on a plane for Salt Lake (by themselves) so that my siblings and their kids can have fun with them over Spring Break. They do laundry, cook meals, are responsible about their homework and have remained cheerful and supportive!

We are grateful for all your prayers, service, well-wishes and love directed to our family.