A Quick Update...

Billy received his pathology results from last week's surgery biopsies. The diagnosis is eosinophilic esophagitis with the primary cause being uncontrolled reflux. Essentially his esophagus becomes irritated to the point it becomes rigid and food becomes trapped. His doctor has prescribed a new medication and he will see him next week to assess further steps and dilation surgery- if needed.

We are still waiting for Julia's repeat scans at the the hospital this Tuesday. Her urologist has called multiple times checking on her which is a little unnerving. I am glad they are on top of the situation but there level of concern makes me nervous and wanting to ask them questions. It is frustrating to have to put that part of her care on hold for right now, but it is what we have to do.

The kids have been busy the past week with co-op classes, plays, festivals, art classes, flag football, lacrosse, and play dates. Last week at CBS Bible study, Julia's teacher did an activity with them where they listed all the attributes of God they could come up with as a class. Tonight as I was putting her to bed she said, "Mommy, today during communion I prayed all the names about God that I could remember from that list we made." I am so thankful for the people God has placed in my children's lives and all that they are pouring into them.

Julia and I just started a new bedtime devotional called, For a Time Such as This by Angie Smith. She has really gotten into the stories and the way they are written and discussed. Part of each section is to personalize the prayers and read them to your daughter. Tonight's were so very relevant to my desires for her and her heart...

"Lord, I pray that Julia lifts up her prayers to You, let her be reminded of the way You care for her and take her burdens on as Yours. Help her to know that You can work through her, even when she feels weak or fearful, and help her understand the power of trust. Give me words to teach her well and strengthen my trust in You so that I am a living example of believing in You, even when it seems impossible to me. Give me hope where I need it the most and the tools to pass along that hope to Julia in a way that makes You more real.

Lord, help Julia to sense Your presence in the times that she feels alone. Remind her in those moments that Your watchful eye is upon her and that she can call out to You from whatever desert she feels lost in. Speak courage and hope to her when she worries that she has been forgotten. Your Word declares this: 'Be strong and courageous; don't be terrified or afraid of them. For it is the Lord your God who goes with you; He will not leave you or forsake you.' May I walk in the light of this promise and teach Julia to as well."

While we wait...

It has been an interesting week since Julia's scan day last Monday. God has given us tremendous peace among all the questions. One of the first lessons you learn in the cancer world is to keep your head where your feet are. Right now for us that is the land of lots of questions and not a lot of answers. Our first task was to contact urology to find out what Dr. Hodges wanted to do about her bladder issues and abnormal urine. After many calls back and forth he decided to start her on an antibiotic. He has several tests and procedures he wants to do, but he is taking the backseat to oncology right now and won't start until her next scans are done.

Today we had her well-check at the pediatrician's office. We love our doctor and it has been such a journey to get to this place. After 9 different pediatricians in 4 different practices and some really horrible experiences over the past 11 years- we are so blessed with the doctor we have been sent. (And he was trained at Brenners which is bonus in our book!) Today just reinforced all the reasons why he is such a good fit for us. It is not an easy job to take care of a child with multiple medical issues and 11 different specialists. He does an amazing job coordinating her care and filling in the blanks where needed. Her last doctor used to start every appointment telling me to start at the beginning and fill him in up to the current day. Whenever he prescribed medications he would ask me if it was something she could have. I appreciate his asking, but I need someone who keeps up and knows what to do next. Her doc also does a great job filling in all the blanks. When you see so many specialists sometimes the normal development concerns get ignored. Today he spent an hour and a half with us. I am so touched by his skill, communication, expertise, compassion, and understanding. Thanking God for you today, Dr. C!

While we wait for lots of other answers, her pediatrician is going to be able to get her into another neurologist in 3 weeks instead of the 6 month wait at Brenners. As much as he wants to keep all her specialists at one hospital, he doesn't want her to have to suffer that much longer without consistent pain relief. She seems to be having cluster migraines and we need some medication options.

They also rechecked her urine to make sure the medicine had cleared up the infection. Unfortunately it is actually worse instead of better, but thankfully we did an additional test last week to be sent for culture so we at least know what we are dealing with. Please pray that this new medicine does the trick. We really need to protect her urinary health and that single kidney.

We have been keeping ourselves busy in the mean time. Last Thursday was our much-anticipated yearly trip to the Dixie Classic Fair. This has become a tradition for us after her annual scans. Unfortunately, we weren't celebrating the same news as usual, but we were so thankful for a beautiful day and fun time together.

 

 

As we were walking around that day, Julia looked at me and said, "Mom, I didn't get the NED (No Evidence of Disease=clear scans) we were hoping for did I?" It broke my heart to know her heart was pondering those questions. I told her we didn't, but we also didn't get any answers- just lots of new questions. She started to cry and said, "Mom, I don't want to have cancer again." My heart broke in a million pieces for her. I know this is a burden she has to carry for the rest of her life. Part of her life off treatment is a regular schedule of screenings and tests indefinitely. She will always have annual scans and things like mammograms and colonoscopies start at age 25 for these kids. As we move forward we hope to better equip her with the tools she needs to face the unknowns, the questions, the scares, the emotions, and even the feelings of others. As we've said before cancer hands you a "goodie bag" on the way out and many of the contents are quite a handful. Pray that we have the discernment and wisdom to know when to talk, when to be quiet, and what we should say to her. 

We did find a fun way to get out some big feelings people were having. Demolition was just what the doctor ordered. Our old deck was falling apart and becoming unsafe, so the kids and some sledgehammers turned it into a pile of firewood. A fun way to see their strength at work!

 

As we sat down to eat dinner Sunday night we had no idea what lay ahead. As Billy was eating his food became lodged in his esophagus. He tried unsuccessfully for an hour to dislodge it. Then he headed to the ER. They did everything they could for another 3 hours and then took him by ambulance to another hospital for emergency surgery during the night. Thankfully the procedure was successful and everything went well. He was released a few hours later. The doctor took pictures and biopsies and we are awaiting pathology reports to determine what condition is causing this and what the next steps are going to be. After a day of recovery yesterday, he seems to be much better just dealing with some discomfort and a very limited prescribed diet.

So apparently our waiting has just grown a little. We are thankful for the peace God has given us in the unknowns. Whatever is ahead is already determined. We know worry carries no weight, but just saps our strength. We trust that God will continue to carry us whatever we are called to face. We are so thankful for our friends who have reached out to help and walk beside us through this in a tangible way. We decided to let Julia pick which day we go back for her follow up scans. It was an opportunity to give her some control and choice in all of this (she announced today that she's tired of doctor's just from this past week). She has picked Tuesday, October 21 because Ms. Betsey will be there to do art, Ms. Stacy is working, and the pet therapy dogs visit that day.

We've been spending a lot of time listening to our favorite music. Julia's repeated requests are Travis Cotterell's new CD- I'm Living Proof. Putting the song 'Every Praise' on repeat is an awesome reminder of how we want to live our lives. And 'Awesome' is great when for those moments you need to preach real truth to yourself. Watching her belt it out with all her might is a beautiful thing! I need a dashboard cam :) She also loves Moriah Peters, 'You Carry Me'. When she asked me to get the song for her I had yet to realize how much it tells her story...

Feels like it's been miles and miles
Feels like it's an uphill climb
Sometimes I get weary on the way
But when I look back at where I've been
When I look back, I'm sure of it
I was right there in Your arms and I can say

Every moment of my life
God, You never left my side
Every valley, every storm
You were there, You were there
I don't need to know what's next
You'll be with me every step
Through it all, through it all
I can see You carry me

There are days I wonder if
You can fix the mess I'm in
Times when nothing seems
To go the way it should
But then I look back on every season
I can find there's ten thousand reasons
To trust that You can work all things for good

Through the wind and waves
Through my worst mistakes
Through the times I thought I walked alone
You were holding me
You were whispering
I will never leave you on your own.

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!