Apology and looking outward

A doctor called us late this past week and apologized for the "misdiagnosis" of cancer. I was starting to question my listening skills, but she verified we were, in fact, told it was for sure malignant cancer on Friday, Feb. 6. Then Monday, after such a long weekend, we were told it was 90% likely MPNST---a certain type of cancer. But apparently, the Birmingham pathologists started doubting themselves on Tuesday and were glad they had sent it off to Emory for verification. On Wednesday, our Dr. Pressey says he ran into the pathologist who said to him, "I'm starting to think it's some rare form of fasciitis. We should hear from Dr. Weiss (at Emory) soon." Then Wednesday night is when we found out it was nodular fasciitis and not cancer.

So, I want to pass along this apology to all who were so emotionally involved with us. It's really hard to believe it was only 7 days (I count the day Paul had surgery and the surgeon told us it absolutely looked like cancer to him). What a 7 days it was! We told the apologizing doctor that so long as she didn't call back and tell us it was in fact malignant, we were okay with the crazy week we had. What a learning experience!!

And now, we're left with a new outlook on life----a new love for our children, a new appreciation for our friends and family, a new dependence on prayer, and a new sense of responsibility to those suffering. This has certainly been a life-changing experience. For starters, I pledge to pray for others as you have prayed for us. I want to be a support and a source of hope for others as so many people have been for us. And, I want to pray for miracles as you all have prayed for our little one. I know things don't always happen the way we want them to----as it has in our case with Paul----and I don't claim to understand this. I don't know why we escaped this and yet so many others really do have sweet, innocent children suffering from cancer or other terrible things. I am incredibly grateful for the miracle of Paul's tumor being benign and yet, I feel guilty that others do not get such good news.

For those who do not know, St. Jude is the patron saint of lost causes. He is one whose aid is sought when all hope is lost, especially in grave health matters and life-and-death situations. It is customary to make a vow that if he helps when called upon, one will publish a notice of thanks. And so, we THANK YOU, St. Jude!!

And now, I look to St. Jude hospital as a place to focus on others. They have a wonderful website and even feature a patient of the month. Anybody wanting to join me can pray for this month's patient and his family (www.stjude.org ):

Joshua Solomon, 5 years old, was found to have a brain stem glioma in August 2008.

Joshua's Story:

Joshua is a sweet-natured boy. He has an engaging smile and he loves to give hugs. An only child, Joshua is the apple of his parents’ eyes. “He makes our day, every day,” said his mom. When Joshua suddenly fell ill during a family trip in late August, his family immediately rallied around him.

During the trip, Joshua developed neck pain and started to vomit. His family rushed him to a local hospital where the emergency room doctor ordered a CT scan and, when the results came in, sent the family to a larger hospital with a pediatric intensive care unit. "We didn't really know why he was sending us there. We were kind of in a daze, and just praying," Joshua's mom remembered. At the larger hospital, doctors ordered an MRI, which revealed devastating news for Joshua's parents: their boy suffered from an inoperable brain stem glioma, a type of brain tumor.

But there was hope on the horizon. Joshua's parents were familiar with St. Jude Children’s Research Hospital and asked his doctor for a referral.

At St. Jude:

Joshua underwent chemotherapy and 30 rounds of radiation. Throughout it all, St. Jude provided Joshua and his family everything they needed. “The doctors are first class,” Joshua's mom said. “The care and concern St. Jude gave us was amazing.”

Joshua's parents are astonished by the generosity of people who give to St. Jude. “Because of them, St. Jude provides care for all children,” said Joshua's mom. “Whether families have insurance or not, the patients get first class care. I know Danny Thomas is looking down from Heaven and smiling.”

Joshua finished his treatment in November, and he returns to St. Jude every three months for checkups. He is in preschool and he loves Thomas the Train. Recently, Joshua went horseback riding for the first time. “He loved it,” his mom said. “He can’t wait to go back."

The big meeting

We had a very good meeting with Dr. Pressey today. He puts me in a list kind of mood because he is very precise and very thorough, so here goes....

The facts at this point:
1. Paul does not have cancer.
2. He has an EXTREMELY RARE benign tumor on his right collarbone classified as "nodular fasciitis"
3. One of the worst things about these tumors is that----as rare as they are----they are commonly misdiagnosed as malignant tumors. There have been several cases in which people have undergone chemo and intense surgeries only to LATER discover it was fasciitis.
4. A week ago today, Paul had surgery and what was then believed to be the original entire mass was removed. The surgeon saw that it had grown "finger-like" shapes down onto his pectoral muscle, but saw nothing else.
5. HOWEVER, yesterday we had the CT scan and there is a very large (about the size of a golf ball, which is pretty freaking big when you only weigh 17 pounds!!) tumor present. Was this there a week ago in the surgery? Or did it grow within the last week? We don't know.
6. "Nodular fasciitis" tumors tend to grow very rapidly. They have the ability to reach their maximum size (which varies---we have no idea how big this thing could possibly get), then they start shrinking and are eventually absorbed by the body
7. HOWEVER, sometimes surgery is necessary.


OUR PLAN OF ACTION FROM HERE:
The CT scan yesterday gave the doctors a great look at this thing. They know exactly where it is now and how big it is. We will have an ultrasound tomorrow to get a baseline ultrasound look at the tumor. Then 4 weeks later, we'll get another ultrasound done so we can measure how fast it is growing......or, more hopefully, that it has decided to shrink. The best case scenario from here is that the tumor will start shrinking and disappear into the nether regions of Paul's body. The worst case scenario is that it will continue growing to the point that it is getting close to his windpipe and we'll have to have surgery to keep it away from there. If it continues to grow after that, we could be forced to have multiple surgeries.

THE AMAZING NEWS is that it is not cancer. We are not out of the woods yet, but the sense of urgency has been relieved.

We are so grateful and so humbled. It will take a long time to process what all has happened the past 2 weeks. More on that another time.

Thank you again for your kindness, your incredible friendship, and your loving prayers. We are so blessed by all in our amazing network of friends and family.

THE MIRACLE IS HERE!!!

We've just gotten a call from Dr. Pressey that Dr. Weiss----the pathologist in Atlanta----has declared PAUL DOES NOT HAVE CANCER!!
He has nodular fasciitis. Here is a definition from the Internet:

"Nodular fasciitis is an unusual benign reactive process affecting superficial and deep fascia. Its rapid growth, rich cellularity, high mitotic activity and poorly circumscribed nature result in it being easily misdiagnosed as a sarcomatous lesion."

Obviously, we are stunned! We will still meet with Dr. Pressey tomorrow to see the CT scan (and the golf ball sized "thing" growing off his collarbone).

All praise to God for this miracle!! Thank God for answered prayers!
Thank you all for your prayers. I am bawling with joy.

More later....

CT scan

So, I'm shaking with adrenaline this morning. We talked to 2 different doctor-friends last night on the phone and got some great advice about how things may go at our meeting tomorrow. They both said Dr. Pressey will be wanting a CT scan to check how far this thing has spread so he can know if surgery is the next step or radiation/chemo to shrink it before surgery. Here's to hoping we can get a CT scan TODAY so tomorrow's meeting will be more productive (I don't want him to say, "Well, we'll know more after that scan. Why don't you call and set that up?")

Paul coughed a bit last night (as he usually does) ...let's pray that means nothing.

The roller coaster ride...

No real new news today, but a productive day nonetheless....

This morning I was really down about things. I felt nauseous and on the verge of tears all morning at work. Thankfully I didn't have to talk to anyone or I might have really lost it. It's just been such a hard year....moving back from England 7 1/2 months pregnant into a rental house that needs a lot of work done to it, then Luke got a staph infection from the insects that love him so and Caleb got an ear infection. Then Paul was born and tropical storm Faye hit all in the same weekend (so our lovely house flooded) so Paul's shining "coming home from the hospital" event was to go stay with my parents who were among the few who had electricity. Then there was the menengitis scare which put Paul in the hospital for 5 days and also the "Great Thanksgiving Poisonous Berries Debacle" in which Caleb landed a late night ER visit. This is not to mention a massive ant problem in our house and 3 ear infections between Chris and me! It hasn't been an easy transition back to the US.

However, after work, I got home and made some calls. First was to our insurance company. A nice lady named Ruth assured me everything was covered and if we get a new job (the hopeful plan) with new insurance, cancer would not qualify as a pre-existing condition because Paul is currently covered. THANK GOD for this. Her nice voice and good news brought on the tears. She said she'd be praying for Paul, and I was reminded of people's goodness......and of God's goodness.

This news---but mostly your uplifting comments which I sat down and read next----brought me back up the roller coaster ride. I called Sloan Kettering in NY and talked to a nice secretary who basically told me that Dr. Paul Meyers is the man but that she couldn't deal with me. We have to have the oncologist call her once the diagnosis is 100%, and things will move from there.

After that, I checked out an article a friend sent me (THANK YOU, RENIE!) by a lady whose teenage daughter went through all this. Here's the link:

http://e-patients.net/archives/2008/10/all-mris-are-not-created-equal.html
I got in touch with this lady and we've been e-mailing all afternoon. She's got experience and wisdom and I'm amazed to have already connected with someone else about MPNST. She knows the leading doctors and is a real advocate for those with MPNST......and, most importantly, her daughter made a full recovery and is doing very well! What hope and what great news!

After that, I took the kids to the park and watched them play while I held Paul. It was a great afternoon.

Many of you have asked for specific things to pray for, so here goes:
1. a productive meeting with Dr. Pressey on Thursday
2. that the cancer has not spread to Paul's lungs (the biggest danger at this point)
3. that one more surgery will remove the bits that have spread and neither chemo nor radiation will be necessary
4. for the emotional roller coaster ride to end and for me to reach a steady place between motivated and hopeful

I will be thanking God for all the practical advice we are getting from doctor-friends and for the spiritual and emotional help from the rest of you!!

Prayer to St. Peregrine, patron saint of cancer patients

O great St. Peregrine, you have been called "The Mighty," "The Wonder-Worker," because of the numerous miracles which you have obtained from God for those who have had recourse to you.
For so many years you bore in your own flesh this cancerous disease that destroys the very fibre of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favoured with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of the sick whom we entrust to you.
PAUL BARNETT
Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy.
Amen

Pictures of Paul

Pathology reports coming in...

We heard today that the pathologists are strongly leaning toward a diagnosis. They believe Paul has what is called "malignant peripheral nerve sheath tumor." The pathologists at Children's Hospital have not dealt with this before and have sent the slides off to a specialist at Emory to get her to verify their diagnosis. We should hopefully hear from her soon so we can move forward.

In the meantime, we have an appointment set up Thursday with a specialist at Children's. We will try to find out more about this kind of cancer before then so we can ask good questions. However, the internet is a scary place. We've found a few websites that seem to think this is quite curable, and we've found some sites that are terrifying us. Please pray this doctor (Dr. P) will be able to lead us well. Most likely, he will suggest we go to NY or Houston for a fairly major surgery. I'm ready to have a plan and tackle this thing.

I am scared, but I believe Paul will be healed.

Paul's history...

Paul was born August 22, 2008 in Birmingham, AL. He was a healthy and beautiful baby---8 pounds and 12 ounces.

4 weeks later, he was in the hospital for extremely high fever. It turned out that he had enteroviral meningitis (which is not bacterial meningitis but more like a really bad cold). We were home from the hospital 5 days later relieved that he was okay.

The next couple of months, he coughed a lot, cried a lot, and was a horrible sleeper. We thought, "We've had 2 really easy babies and here's our tough one." Something didn't feel right but we just thought he was a little harder than our older boys.

On December 13, I woke up with a fever. I went to the "doc-in-the-box" and was prescribed an antibiotic for an ear infection. Paul (who was breastfeeding) started sleeping better almost immediately. I guess the antibiotic was helping him too. Our lives suddenly seemed easier and for the first time since his birth, we starting thinking things were going well.

Then, on January 2 (a Friday night), Chris found a lump on Paul's collarbone. Paul was in no pain and it didn't bother him when we touched it. We took him in that Monday, the 5th, and it was diagnosed as a broken collarbone. I repeatedly said, "We haven't dropped him. He's not rolling over yet. How in the world could he break his bone?" But, I was assured, it was obvious from the x-ray that he had broken it 10-14 days earlier because of how far along in the healing process it was. I was told that 2-3 weeks later the lump would be gone.....the lump was a normal part of the healing process.

We waited 3 weeks before calling to say that no, in fact, the lump was bigger. At this point, we were referred to a bone specialist who could help us find out why the break wasn't healing properly. Within 30 seconds, the bone specialist told us Paul didn't have any broken bones and that we needed to have an MRI or ultrasound done to see about having whatever it was removed.

We met Dr. M., our surgeon, the next morning. He did an ultrasound, determined it was a solid tissue mass, and told us he'd operate 2 days later. So, Feb. 5, Paul had surgery. Dr. M. removed the mass but told us that whatever it was, it looked like cancer and had certainly spread to the tissues around his shoulder (including Paul's pectoral muscle and the tissues surrounding the collarbone).

Purpose for this blog...

I write this blog to
a) help keep those interested in Paul's progress up-to-date
b) illicit prayers for Paul and the medical staff that will help him
c) document the miracle of Paul's healing
d) make connections with other families suffering from this rare cancer

I've been told most of my life that I'm a private person who is hard to get to know. It will be hard for me to "bear my soul" on a public venue like this, but I'd like to try so I really might be able to connect with others going through this, and so that I can genuinely ask for your prayers.