Scan Day- Take 12... 2014

Wow! I have not posted on here in a year! It feels like forever! In all honestly this post is not the way I wanted to make a comeback. I look at those sweet little faces at the top of the blog and I can't believe how much my babies have grown. But I also remember all too real the trial we were facing in our lives at that time.

Today was Scan Day for Julia. Every October we spend the day at Brenners assessing all her systems making sure everything's a go and there's no cancer cells lurking and multiplying. Today was one of those benchmark finish lines. She has been off treatment now for 5 years and an NED (no evidence of disease) result means she is promoted to the Survivors Clinic with Dr. Castellino (our Hyundai Hope on Wheels grant recipient doctor) where she will receive long term care for the rest of her life. Granted the annual checkups continue, but this is the point when your chances of relapse of your original cancer drop off and they start monitoring for secondary cancers and other side effects. I know, it's an awkward "woo-hoo", but in the solid tumor cancer world it means you earn the label of "survivor" and you check off another victory box. Woo-hoo!

 

We were SO ready to do that. 

The scanxiety has been less than in past years and Julia was prepared for the day and ready to be poked, prodded, scanned, and questioned. We were all keeping busy talking about survivor t-shirts, celebratory trips to the fair, dinner plans, and a fun vacation getaway.

We started with her x-rays and the orders were actually in the system for the first time in 5 years! Good sign. They did all her lung views, then the scoliosis series. She developed this last year from the abdominal radiation she received. (Fortunately the radiation oncologists learned to evenly nuke both sides of the spine because their cancer survivors were growing up lop-sided, but it's not a perfect science.) Her spinal curve is still present, but stable. Woo-hoo!

 

Then we had her chest and abdomen ultrasound. It was great to see Kalista again, the tech who has been with us through this entire process and goes out of her way to love on Julia. The good news... her kidney they removed is still gone and nothing has grown in its place! Woo-hoo! Her lone right kidney is large and in charge and working like a boss. Woo-hoo! All the other organs, arteries, etc looked good until we got down to her bladder. The bladder wall usually looks thin like an egg shell. Hers was more like at a round doughnut. Julia has had diffuse bladder thickening in the past, but that was 4 years ago before we knew her colon wasn't functioning. It resolved on its own after her cecostomy surgery and new daily meds regimen. Her urologist, Dr. Hodges, released her over a year ago after her assortment of urology issues all cleared up. Woo-hoo!  Kalista took all the imaging in to "the wizards" in the dark room in radiology. They agreed that the bladder was suspicious and also full of debris. Lovely. Ugh.

 

We went upstairs to wait for her labs to be drawn. She handles it like an old pro and Pat is awesome at her job! She filled 4 tubes today for oncology and for GI, who ordered a battery of tests to try and get to the bottom of her chronic stomach pain. We will follow up with Dr. Safta (GI) on November 4th. We have kicked Dr. Glock to the curb and still long for Dr. Fortunato, but aren't willing to make the trek to Denver like his other patients are doing. There is still not a good GI motility doc at our hospital or any of our neighboring ones.

Then we had her oncology physical. They were happy with her growth and development. (and we love Nurse Rhonda!)

 

They are concerned about her headaches. She has persistent pain in the front right side of her head going on 6 months now. It really stinks when the only pain meds you can take are tylenol and narcotics (because of her single kidney). I give her vicodin when it gets really bad but don't want her taking it every day. They are referring her to neurology (about a 6 month wait) and starting her on caffeine and a headache diary.

Then it came to results. Her labs showed her white blood count is too low. This was a problem after treatment, but it had finally rebounded. She also has low neutrophils and they have no idea why. They are going to wait and retest. Her chest x-ray showed 2 spots on her lungs. This is the second time I have had to hear them utter these words and it is the same every time. Your heart just stops for a minute and it all feels very surreal and in slow motion. "The wizards" couldn't determine what the spots were and want to repeat the test in two weeks. They said it is either blood vessels, asymptomatic infection, or cancer. So for now we just have to wait it out...

The kids heard everything that was said, but certain things are just implied, like "possible relapsed cancer", and not said explicitly. I don't think they have connected the dots on all the facts and I am happy to leave it at that for the next few weeks. They know that is an option at every scan, but aren't pushing for answers at the moment.

We were still waiting for her urinalysis results six hours after sending it to the lab. Nurse Nancy called to rattle some chains and the lab technician said she had the urine but didn't know what to do with it?!? Nancy brilliantly suggested urinalysis (duh!) and testing finally commenced. Unfortunately the results came back with "cloudy, moderate bacteria, and high leukocytes"- but not a classic UTI. So the questions continue. All the results have been sent over to her urologist, Dr. Hodges and we will await his verdict on the urinary side. He is a brilliant, world-renown doctor who I trust completely.

As far as the rest we are just left to wait it out. The cancer world has a way of raining all over your party whenever it feels like it. We have lived that out for years. It wasn't so much a shock today as another "is this for real?" It's kind of like the surprise party without the guest of honor or the anticipated school promotion with a summer school slip instead. This is not where we hoped we would be, but it is where God has us right now. As much as cancer rains all over our parades in this life, cancer kids have found a million ways to dance in the rain.

 

After our cafeteria feast- my kids can put a hurtin' on some cafeteria food- we stopped in the tower next door to visit our dear friend Beth as she battles AML and awaits a bone marrow match. It just hits you sometimes how crazy our life can get and how much everything you know as normal can change in an instant. As I held my bag of lab printouts, Beth with her newly bald and beautiful head shared her latest reports, we talked about life changes and new schedules and kids sports and family, and our kiddos played the Angry Birds board game launching pigs and birds across the room. This is just life for all of us.

As we drove home from the hospital the kids started to spontaneously sing, "My Savior loves, My Savior lives, My Savior's always there for me. My God He was, My God He is, My God is always gonna be!" And that is where we live. We have experienced too much suffering, gone through too many trials, and buried too many little friends to put our hope in this world. We know our HOPE is on the other side and lasts forever no matter what happens here and that is the only place we can find peace.

Thank you all for your love, prayers, and support over the years and now. Every day we have is a precious gift of grace that none of us have earned or deserve. We thank God for each one and pray He opens our eyes to all the blessings He puts in every day- even the hardest ones. May God richly bless you and each of your families!