Started IGF Therapy

Had an early morning. Up for catscans, Appt with Dr and then they started Ryan on the antibody. He has tolerated it very well. It took about 2 hours to infuse. We recieved a preliminary report back from his catscans. His mass on the adrenal bed has increased in size. His spots on his liver have grown some as well. They did not give us measurements yet. We will know more when we get the final report faxed to us.With this, the clinical trial is still the best method of treatment. We are still hopeful that this will work. The best news today was that his mitotic level, which tells you how fast the tumor is growing. Ryans is a low mitotic rate which means that it hsa a slower growth rate. THis was good news-the Dr said during his experiance, these types of tumors have responded well to additional therapies.

We are missing you all back home so much. Cant wait to get back!! We are so fortunate to have our family here to keep us company. The boys have loved spending time with their cousins "Nolah and Jake" (Kolby calls Noah, Nolah - too funny). My aunt and uncle have set up our own little place downstairs, where the boys even have their own beds. Thank you again so much Nick and Trish. We will be heading back that way tomorrow to transfer Ryans care to University of Chicago where he will recieve his antibody injections from now on.

All our Love, Hope you all have a very happy New Year.
Ryan, Ashley, Brody and Kolby

Process Started

We met with our Dr today. The process has started to enter into the clinical trial. We met with a slug of people today. The boys were such troopers, in fact they were even better than their daddy who was irritated by the time we finished with the first physician and they told us we had to meet with a dietician. He said he knows whats healthy and what he should eat . . . it's a waste of time. LOL

He had blood work and a chest xray today, and we will go in at 6am for a chest, abdomen and pelvis ct. We then meet with the oncologist that runs the clinical trial to determine a start date.

We will let you all know tomorrow when we will be starting.

love you ALL!!

Were in Michigan

We arrived in Michigan today. Our appt is at 0730 in the am (0530 at home). We will update the blog as soon as we are done.

Update

Im sorry that we have not given an update in quite sometime, the last few days have been a whirlwind!
Yesterday, we had our appt with our Oncologist in Fruitland. We were supposed to start the radiation right after. Our oncologist recommended that we consider the clinical trial as one of our best options. For those of you who are unfamiliar with what this entails, I will give a brief overview. To qualify for the clinical trial, you have to have reoccurant cancer, which Ryan now has with the 1.7 cm mass on his adrenal bed. When we initially talked about the trial, we considered it because if we started the radiation before, then the trial was out. We were not okay with having an option taken, so we gathered more information. After finding out that there were options that were as good, and didnt require us "moving" to Michigan, we decided to stay with the radiation treatment and not consider the clinical trial as an option unless our oncologist said that it was the only way to go . . . and we were confident that he wouldnt say that.
Oh were we wrong! Without much hesitation that is exactly what he recommended to us. So we have pondered and prayed, and came to the decision today that we will give it a go. ANY OPTION FOR POTENTIAL CURE IS WORTH IT!!
So, we fly out Saturday morning. We will be taking the kids with us and staying for 6 weeks. In 6 weeks we will know if the treatment is working, and re-evaluate our sittuation at that time.
We want to again thank you all for being so supportive. We love and appreciate you all so much, and we will make it through this because you have all helped carry us through this.

Have a Very Merry Christmas!

Appt with Dr tomorrow

We had a phone call with the Dr from Michigan this morning. Ryan has a 1.7 cm mass on his adrenal bed where they took out his tumor. They are also seeing 3 spots on his liver that are possibly residual disease. We have another appt with the dr tomorrow at 1:30 to determine what the best course for treatment will be from here. His options are to start the chemo and radiation, start a clinical trial along with the chemo and radiation, or go back in for surgery to remove the mass. We will update you all as soon as we know more.

Adding Comments

Okay so I changed the settings to the blog- it looks like anyone can now add comments. You do not have to have a blog account to do this.
Try it out!

Update

We will be heading home Saturday.

We saw the Radiation Oncologist this morning. He had a preliminary reading of Ryans scans, and he is not seeing any suspicious spots on any other organs. He is nervous about some areas where his tumor was removed that look like leftover cancer cells, as well as a lymph node between the vena cava and aorta that is looking suspicious on his scans. They will treat this with radiation therapy to eliminate any leftover cancer cells. After much debate on wether to stay here to recieve the radiation therapy, we have decided to come home and get the treatment. Ryan will get radiation daily for 5-8 weeks, as well as starting a chemotherapy drug called mitotane, which he will have to take for 2-5 years . . . yes years.

We will have the final results of the scans tomorrow, as well as the mitotic level. The mitotic level will tell us how agressive his cancer is.

We love and appreciate you all!

Pictures

Ryan and Ashley

University of Michigan Hospital (this place is gigantic!!!!)

U of M Hospital Campus

Kolby sporting Gramas sunglasses

Update

Holy cow . . . this place is ginormous. The hallways are like rush hour traffic!

Saw the oncologist this morning at University of Michigan. He has ordered additional test and scans, and we will see the radiation oncologist in the morning. They have decided that they will order mitotane chemotherapy, and 5 weeks of daily radiation. The radiation oncologist will be able to tell us more details on the radiation after we see him tomorrow. The treatment plan is all pending on the results of clear scans that we will have done tonight and tomorrow (which we all know we be CLEAR!!!) :):)
I will update more when we have more details.

p.s.
yes it is snwoing here today, but its actually not that cold!

Just Landed in Salt Lake City, UT

We have a layover until 1:30. So far our flights have been on time. It's snowing in Salt Lake-hopefully our flight will go out on time! :)

Michigan Update

We will be flying out for University of Michigan Sunday at 8am. We will spend the week there.
Tuesday we see the Adrenal Cancer specialist, and we know that we will see the Radiation Oncologist on Friday. Other than these, we are not sure yet what they will do.
I will keep you all posted throughout the week.
Love you all!

University of Michigan Cancer Treatment Center

Michigan it is. We will be seeing a specialist by the name of Dr Hammer. He is well known and serves most of the adrenal cancer patients in the US. In order to get an appointment with the UofM, they have to have all of your radiology films, and 10 pathology slides of the tumor. THIS HAS BEEN FUN.
To make a really long story short- we just got back from sending all of these out overnight by Fed Ex, so they will have them at the University tomorrow morning. The coordinator for Dr Hammer will call us tomorrow with the exact date and time of our appointments. It is looking like we will fly out Monday morning.

No news yet, we should know more in the morning!

Oncology Appointment

We saw the Ocologist today. Ryan's scans came out negative-no sign of the cancer spreading to other organs. Since he has not treated this type of cancer, he wants us to go to a large University to see an Oncologist. Its looks as though we will either be going to the University of Michigan, or MD Anderson in Texas. We will be hearing back from him in the next hour to let us know where we will be heading. He said that we will be going soon, since time is of the essence.

Ryan is healing great, and has been such a pillar of strength. God works wonders and we are confident that Ryan will set history as being "cured" of this rare type of cancer. We are so thankful that we have all of you to lean on during this difficult time.

From our entire family to yours, we thank you all from the bottom of our hearts.