Oncologist Appointment

Many of you have heard that our appointment has been moved up to Thursday morning. We need to be at UCLA by 7:30 AM tomorrow. This will be our first consultation with the actual Oncologist who will be managing George's care. We expect that the "Treatment Plan" will be outlined for us, and we will know more about the actually type of chemo, and when it will start, after the appointment.
Many of you have graciously offered to bring us meals, and so many already have, and we are very appreciative for that. We decided to hold off on getting any regular meal schedule started until we knew what the treatment plan would be. We have a friend who will be arranging this so that we can get a few meals each week during treatment. I will keep you posted when this is set-up.  Thank you.
~Donna

On Our Way to UCLA!

Word came in today from Anthem Blue Cross that they had reviewed our appeal and had accepted our petition to go to UCLA!  We are now approved to meet with an Oncologist and start treatment.  Our goal is to meet with him as soon as possible this coming week.  We don't know when George will start chemo., but the oncologist already has all of our records and is up-to-date as he works in conjunction with Dr. T.  They are all part of the same Pancreatic Team. This is the best news we have had since receiving the "bad news," in February. 

From now on, we can concentrate on fighting this illness, rather than fighting our insurance company. That battle is over and we can now focus on the real issue at hand.

Thank you for your love and support and especially to those working behind the scenes who had a key role in getting this approval.  How can we adequately thank you....

With love and gratitude,
~Donna

Immediate Request Needed

We just received a phone call from our medical group denying our request to seek treatment from the Oncologist at UCLA. We had a phone conversation earlier today from the surgeon, that is with the our medical group, in which he shared that the medical group believes it is not standard treatment to provide chemotherapy in hopes of shrinking the tumor to a point of it becoming resectable. The fact that out medical group is not on the cutting edge is exactly why we are seeking treatment elsewhere. With this forwarning I had already contacted Anthem Blue Cross to find out the procedure for filing a grievance if the denial came. What I didn't know at the time, was that just 15 minutes later I would be using this process.  The Medical group feels we should use their oncologist.  A few facts to share:

1. Our medical group currently has just ONE oncologist who handles all cancer patients for Santa Clarita and the San Fernando Valley.
2. This Doctor is obviously overworked and limited on resources.
3. This Dr has no area of speciality, and offers only "Standard Treatment" and has personally stated that he feels there has been no chemo. improved in the last 20 Years.
4. He has a history of being a poor communicator with patients and family members.
5. He offered us NO HOPE!!

How could anyone think that this is the person who should be managing George's care...

So, I immediately called Anthem Blue Cross and filed a grievance about the decision. I was blessed by getting a Rep on the phone named Mindy, who was compassionate and took down every detail I shared with her. She wrote up the grievance letter, and has submitted it as an expedited case. I ask that everyone please pray for the people that make this decision. Pray that they want to help us give George a chance at the best treatment we can get him.
The process could take a little as 72 hours or as long as 30 days, however that will depend on the expedited status. They know that we can't wait 30 days, however legally she had to tell us that.
I will also share that I'm also looking into the process of how and when we can change our medical group. I already know that this can't be done immediately, but down the road it might be an option.
Needless to say it has been an emotional day, and I now rest it in God's hands. I can't tell you how grateful we are for all the Prayer Warriors we have.
~Donna

No Need for the CT

Today we received a call from Dr. Tomlinson with the news that he was actually able to get our original scan uploaded into a computer at UCLA which gave him a clear reading. He consulted with another Doctor and Radiologist, and it was obvious to them that the mass is encasing the Portal Vein. This would mean that at this time Dr. Tomlinson would not be able to remove the mass through surgery. The plan will be to start Chemo first, under the care of a UCLA oncologist, and a follow-up CT scan will be done at a later time. That future time will  be determined by the Oncologist and could be in six months, or more, depending on how the tumor responds to the chemo. It will also depend on how well George reacts to the chemo. We will have more details after meeting with the Oncologist, and know more about the treatment. At this time we don't know when any of this will happen as we still await approval from our insurance.
The paperwork has been started, but we were told we may not hear anything until this coming Monday.
Our goal right now is to get George strong ,and in a good state to start chemo. He has lost about 22 lbs. since January so we need to bulk him up. Were keeping busy doing all the important things that one puts off, and of course, helping Suzanne (George's Sister), on a limited basis, to manage their Dad's care.
We are grateful to our friend Andrea, and her love of photography, who was able to get us an up-to date family photo to place on the blog.
~Donna

Some Potentially Encouraging News

Dr. T., from UCLA, called us Saturday evening at 7:00.  He said he was looking at additional scans that had previously been taken of George and that he was now not ruling out surgery at this time.  He said the quality of the scans was not good, but upon closer study he felt things looked better than he originally felt when we met with him last Thursday.
Dr. T. will be working on our insurance approval to get us in immediately for the high imaging scans of the pancreas that will be more specific to that area.  At that time, he will know for sure if surgery is an option or not.  We're hoping that the scans will be no later than this coming week.
In any case, if surgery is found to be a possibility, at least we have more options to choose from in the not too distant future.
~ Donna

Meeting with Dr. Tomlinson

Our Morning at UCLA was long, but we feel encouraged after meeting with Dr. Tomlinson. First I must say he and his staff were very kind and helpful. He spent almost an hour with us going over the treatment options available for Pancreatic Cancer. The main thing that we discussed was the fact that Surgery will not benefit George at this point, and chemo will be the first step. The option of Surgery is not closed, but it will be reevaluated after it is seen how the tumor respondes to the chemo. The Pancreatic team that Dr. Tomlinson presented George's case to all agreed that the CT done at Henry Mayo is lacking in quality and needs to be redone on a higher quality machine to get a proper reading and staging. UCLA started working right away on the paperwork and request to have the CT approved by our insurance and scheduled. We talked a great deal about the chemo option, and were told that many types are available. Most encouraging was the fact that Dr. Tomlinson said that if "Plan A" stops working or George doesn't tolerate it, we will move to "Plan B" and when that stops we move to "Plan C" and so on. He must have listed 3-4 different drugs that have been effective in shrinking pancreatic tumors. We know this will not be easy, and we may have very difficult days ahead, but he said George is young and healthy and can do this!

We talked about the possibility of the tumor shrinking enough to be resected at a point down the road. Dr. Tomlinson said if and when he feels that benefit outways the risk of the Surgery then he will offer that option. It is major surgery and not without very serious risk. Dr. Tomlinson had just preformed the Whipple Procedure yesterday on a patient, and has another scheduled for Friday morning. We feel he is very qualified, and knows what is resectable or not.
Next, we will be waiting  for the call to say the CT approval is in, and then set the date to get it done. We will then request approval to allow chemo treatment to be done by an oncology doctor that works with the Pancreatic Team.
Sorry for the delay in getting this information updated, but it's been a very long day...
Good night,
~Donna

Wednesday Night Update

We feel blessed that so many of you have contacted us regarding our appointment Thursday morning at UCLA. We could not begin to properly thank each and every one of you for the love and support that has been poured out on our entire family. The friends that have made sure our family is well fed, and the kids transported to school or to church events, has been so greatly appreciated.  The cards, email's, texts, visits and overall help, are such an encouragement to both of us.
My mom is here tonight, and will manage the morning routine with Hanna and Matthew so we can hit the 405 first thing. Our appointment is at 10:00 AM so prayer around that time is requested. We will most likely not have information to share with you until the afternoon, but we will be updating the blog upon our return.  Thank you!  Love, George and Donna.

UCLA is all set

Wednesday was spent making, and taking, many phone calls. Early in the morning I sent an e-mail with the results of the Endoscopic Ultrasound to the doctor that I had made contact with at UCLA. Within an hour,  Dr.Tomlinson personally called me on my cell. We went over a few of the medical details about Georges case, and he wants to see George next week. He is presently in Texas, presenting at a medical conference but is eager to see what he can do for us. He will be presenting George's case to his team next Thursday morning, and will meet with us a few hours later. The team consists of other Surgeons, GI doctors, Oncologists and a Radiologist. They will all give their impression and recommendations for treatment options. We could not have asked for a better team, and know that it is worth the wait. We also know that Surgery at this moment may not be the best treatment plan so Dr. Tomlinson is working on getting us connected with an oncologist. We may even see one that very same day, but that is not confirmed.  I Fed Ex'd all of George's records to him so we shall see what next week holds.

~Donna

Discouraging News

Late Tuesday afternoon we met with the surgeon from Facey, our medical group. He was very compassionate toward our situation and spent a great amount of time educating us on the Pancreas and the areas involved. His professional opinion is that George's mass is not resectable. He based this on the fact of the encasement of the portal-vein, even though no obvious invasion is seen there it's very close. This was not the news we wanted to hear, and not the battle I was prepared to fight. The surgeon admitted that he is not a Pancreatic surgical specialist, and told us he would give us a referral to UCLA. He made a few calls right then, and received the approval. We are clear to make the appointments. I will be working on that today, and keep you posted as to the next step.
The surgeon gave us a great deal to think about regarding treatment, and offered to help us in anyway if needed.

Endoscopic Ultrasound

The preliminary results are very encouraging, and a bit of good news in a bad situation. The GI Doctor that did the procedure feels that the Mass is "borderline resectable" and it will be the surgeon's final call. They could see that there is encasement of the portal vein-superior mesenteric vein, but no invasion. They were also able to biopsy the lympth node in the area of the mass. The pathologist looked at four different areas and they all appeared clean and no cancer present. It was sent to the lab for a second and final look prior to making the result final, but it looks good.

The GI doctor feels it will take a skilled surgeon and is advocating that we seek a consultation with the UCLA Pancreatic Surgical Team. He was so kind, and even gave me his personal cell number so that we could have the surgeon call him. We have been so fortunate to have one of my colleague's connect us with an Oncology surgeon at UCLA and will now request again our medical group give us the referal.

What is Next:
We meet today with a surgeon from Facey, and have the required consultation in which I will state the case that our group surgeon is not qualified to do the surgery needed. This is a "Hoop" that we have to jump through, but I'm prepared with all my questions and facts. My prayer is that the surgeon reconizes his limitations, and quickly agrees to start the paperwork. I have been corresponding with the surgeon at UCLA, via email, over this past week so I'm confident that once the approval comes in we will move along fast. We also have a contact at USC so we will not rule out any of our options at this point. We will post again tonight as to the results of today's appointment.

Thank you to everyone who was praying and thinking about us yesterday during the procedure, and to Tara and Lianne who helped distract me during the very long wait.

~Donna