Friday Julia had her annual pediatric oncology follow up appointment. She has been doing well the past few months and we were praying for more good news. She has not had a lot of anxiety about this appointment which makes things much easier. It was great to see all familiar faces and she went right back with Nurse Rhonda to be triaged...
Getting labs drawn has been a tough hurdle for Julia the past few years. Ever since she was traumatized a few years ago during a procedure downstairs, she completely loses it when facing anything painful. This year she walked in with Ms. Pat and sat right down in the chair! I was completely blown away! This is a huge answer to prayer. As a toddler and preschooler, Julia was always a calm, trusting patient who would put her arms out for IVs and never shed a tear. It has been so hard to watch her over the past few years come totally undone and feel so out of control at the hospital and in her daily life whenever she has to deal with pain. To see her completely in control of herself and facing pain without blinking an eye was huge! Thank you to all of you who have prayed for her over the years and this past week- it is working. There are so many little things about her personality and childhood experience that have been forever changed by her experience. When I see a glimpse of who she used to be it is profoundly meaningful.
We started down in cardiology with her echocardiogram. One of the chemotherapy drugs she received is extremely toxic to the heart. As a parent it was tough to sign those consent forms and watch the nurses don all their protective gear as they pumped the red poison directly into my 3yr old's heart. Kids who have received it are monitored every 2 years for congestive heart failure. Julia finds echo's extremely relaxing and I am fascinated by what we are able to watch on the screen. As I sat and watched her heart beat from the inside and her valves open and close as blood passed through, I was incredibly grateful for her life and the way God knit every piece of her together.
The tech was telling me about her caseload for the day and it was strikingly obvious she sees two types of patients- those born with broken hearts who cardiac surgeons work sop brilliantly to fix and those like mine who are born with working hearts and doctors have to poison to save and end up breaking their hearts. Medicine is often such a twisted science. Cardiotoxicity is one of the many challenges in pediatric cancer treatment. The drugs being used to kill cancer in children cause damage that destroys their developing bodies and cripples or even kills them in the decades that lie ahead.
The cardiology lab is part of the 7th Floor Pediatric Clinics where I now work for Arts for Life. Julia was not about to let me off he hook on my day off. She sat down at one of the art tables and told me she needed to do art. Well, can't say no to that. She is after all the whole reason we found Arts for Life in the first place :)
So she created a set of fish. I guess she's feeling inspired by the two week's of monsoon rains we've been having in NC.
We headed back up to oncology to meet with her medical team. It is a huge milestone to be seen in Long Term Care Clinic now. Last year was her 5yr post-treatment visit that should have gotten us there, but unfortunately there was too many issues with her scans last October. We are so humbly thankful to reach this point! When we were told she had cancer with a 60% 5-yr survival rate, we had no idea what the future would hold. There are so many dozens of children that were in treatment beside her that are not crossing this line with us. There is no rhyme or reason to who receives that undeserved gift. It is not something we will ever understand this side of heaven. Their absence beside us is palpable and the holes they leave just echo and ache...
In their honor we move forward each day (even the hard and messy ones) with incredible gratitude for the precious gift of life we are given, remembering that good health is not a promise.
The promotion to the Long Term Care Clinic means a new binder. Those of you who have been with this journey from the beginning may remember the "Welcome to Cancer" binder we were given in the beginning. While she was in surgery for her radical nephrectomy and port placement it was put on her hospital bed for our return. I hated that binder. I hated finding it like a "welcome gift" in our room. I hated that this was our new path. I hated that it lived in my daughter's bedroom tracking all her labs, specialists, appointments, illnesses, and hospitalizations. I hated that it was made for leukemia patients and given to solid tumor cancer families as a mediocre substitute. I did use it though and referenced some of the information as a I began my crash course in becoming a momcologist overnight. I always had a love/hate relationship with that binder.
So now we have a new one and I have found it comes loaded with the same love/hate. I am humbled and thrilled beyond words to be receiving one. We have made it to this point and it does feel amazing. It is like a diploma for promotion to the next level in "cancer land". It is like be handed the golden key. For thousands of cancer families they would do anything to be receiving one. So it comes with a dose of survivor's guilt and palpable responsibility to carry the torch forward. It lays out summaries of everything that has been done to Julia. It is never enjoyable to see it all on paper. At the beginning of treatment parents are asked to sign off on dozens of pages of documents authorizing the surgeries, organ removals, chemotherapy poisons, toxic medications, radiation, clinical trials, etc. Basically your child's life is on the line and they are trying to do everything in their power to save them without killing them. You sign your acceptance, on their behalf of hundreds of side effects and complications now and for the rest of their lives and the understanding that they may kill them in the process. Not the place any parent ever wants to be. I remember asking questions about radiation damage to Julia's reproductive system. They calmly looked at us and said, "She's so small we can't avoid those areas and right now we just want her to live long enough to even have to worry about it." Point taken. It's a whole new reality.
Now that Julia has passed the 5 year survival mark, the chance of her original cancer returning drops off and her chance of secondary cancers caused by treatment climbs every year. It's like changing tracks on a roller coaster- we've come down the huge hill, but now we're ticking up a new track. They compile information and screenings on all the side effects specific to her cancer, surgeries, and treatments- sadly many of them she already has been dealing with for years. As they went over each one they kept saying "She already has that", "She already has that", "She already has that". U.g.h.
Then we had to wait for results to start coming in. Julia met up with Lauren in the lobby. She was one of Julia's favorite Arts for Life volunteers and is now a counseling intern for the peds oncology families. Julia challenged her to a lively fooz ball tournament. Turns out Julia's skills are sharp as ever and she was trampling Lauren in no time. We laughed that fooz ball is part of the skill set these cancer kiddos leave with after living up here for so many months and years.
After Julia won 4 games in a row we went to visit Ms. Stacey in the playroom to get her Beads of Courage.
Julia was thrilled to get her Survivor tag and to pick out her Courage bead for conquering her fear of pain in the lab- a beautiful glass fish...
Then we played Operation. This girl loves to take out organs whenever she gets a chance.
After a full morning being NPO she was happy to finally get something to eat and drink and hit the new cafeteria. We were already big fans, but their recent complete overhaul is amazing! So many delicious, fresh, healthy, local, and made to order options. It is so hard to decide!
Then we headed back up to wait for results to come back. Arts for Life was hosting a digital workshop teaching Stop Motion animation. Julia jumped right in with her new fish she sculpted. She made a watercolor backdrop and felt sea floor and filmed her first stop motion movie!
The whole process was so fun and easy. You can get the app for free for your own use. I definitely recommend it for fun and for projects. A few basic instructions and they are ready to go. There are lots of sample movies on the site they can watch to get ideas and inspiration. They can easily add frames, adjust speed, add music, and voice overs, and so much more. On the way home in the car, Julia made another movie in the car herself.
So I guess the best news was there weren't any big surprises. All of her side effect issues are the same and stable. She is still NED. Her heart damage from the doxorubicin is the same and biannual echos will continue. Her bloodwork looks the same. Her white blood count and neutrophils are still too low and it appears to be permanent at this point- an effect of chemo. Her organs are all good and doing their jobs. Her upper GI, lower GI, and migraine issues are the same and we will continue daily to try and find effective combinations of meds, supplements, and treatments with minimal side effects. The only surprise for us was her urinalysis. The results came back abnormal with multiple numbers all over the place. Just like last year, we have infection without symptoms. We repeated her tests and sent for cultures so we can effectively treat. It is somewhat concerning to find another infection we were unaware of because it is so important to protect her urinary tract to preserve her single kidney health. So we start on new meds and wait for Dr. Hodges to weigh in.
As we were leaving the hospital with our good news, our dear friend Joseph was taking his last breath here on this earth. After valiantly battling GBM brain tumors for the past four years, God called him home Friday evening.
Joseph was an amazing kid. From the moment of his diagnosis and first brain surgery, he viewed this disease as a mission field and use every second of it to glorify God and draw others to Him. God so faithfully and lovingly blessed Joseph giving him 4 miraculous years of life when his initial prognosis was so much shorter. He endured multiple brain surgeries, brain radiation, chemo, and experimental drugs and therapies- most with minimal side effects and no complications or deficits. He defied the odds at every turn! He knew every day he was here was a miracle and an ordained calling by God. In the end he spent the last weeks of his life in bed, blind, unable to move his own body, dependent on morphine and round the clock care, but he continued to worship- even asking his family to hold up his arms and sing praise.
We will forever be touched by Joseph's battle and his amazing spirit. He was one of a handful of children from our "non-cancer life" who were diagnosed after Julia. We were floored by his diagnosis and heartbroken for his family. It truly felt like a violation as cancer crossed yet another line, making it's own rules with those we love. But we will forever be changed by Joseph and the way he chose face life and eventually death. I encourage you to read his mom, Alison's words of his last day and read back over his amazing testimony in previous entries. We appreciate prayers for his parents and 4 siblings as they heal, recover, cope, and move forward in the difficult days and weeks ahead. A flashback to simpler days...
In honor of Joseph, his family is continuing the Building Hopes Foundation that Joseph started. If you feel led to donate you can do so on the website. He was recently featured in People magazine for his efforts! You can read the article here. We will never forget you Joseph and we will never give up the fight for pediatric cancer awareness, better and safer cures, support for families, and sharing the true HOPE that carries us all through this journey.
The pediatric cancer world is not an easy one to be a part of by any means. With every victory comes a loss, with every joy a tear; but we have to carry on. For the fighters, the survivors, and all our precious angels we have to look at our lives as a gift and responsibility. We are blessed beyond measure to be able to take a deep breath and celebrate where we are today and how very far we have come. We are so thankful for the gift of life and every day cancer loses and Julia wins. Every time I see her laugh, watch her outgrow another size of clothes, see her learn something new, or just wrap my arms around her and kiss that sweet curly head I know I am receiving a precious, priceless gift every single day. We celebrated with our annual trip to the Dixie Classic Fair. After two solid weeks of rain, it was the first day of glorious, Carolina blue sunshine! Carter was playing in a soccer tournament at school that he didn't want to miss, so Julia invited her friend Claire to come with us as a ride buddy.
We had an absolute blast! It wasn't crowded so the kids were able to rise everything they wanted. The fair food was delicious as always and we watched some great shows old and new.
I always treasure this day of the year for what it represents, but also the chance to see her having so full of life and having so much fun. I confess I do shed a few tears behind my sun glasses watching her squeal and laugh on the rides. I rode the giant ferris wheel, the cliff hanger gliders, and the giant swings with them this year. Seeing her face beaming beside me and sharing her joy is a memory I will treasure for life.
The cardiology lab is part of the 7th Floor Pediatric Clinics where I now work for Arts for Life. Julia was not about to let me off he hook on my day off. She sat down at one of the art tables and told me she needed to do art. Well, can't say no to that. She is after all the whole reason we found Arts for Life in the first place :)
In their honor we move forward each day (even the hard and messy ones) with incredible gratitude for the precious gift of life we are given, remembering that good health is not a promise.
So now we have a new one and I have found it comes loaded with the same love/hate. I am humbled and thrilled beyond words to be receiving one. We have made it to this point and it does feel amazing. It is like a diploma for promotion to the next level in "cancer land". It is like be handed the golden key. For thousands of cancer families they would do anything to be receiving one. So it comes with a dose of survivor's guilt and palpable responsibility to carry the torch forward. It lays out summaries of everything that has been done to Julia. It is never enjoyable to see it all on paper. At the beginning of treatment parents are asked to sign off on dozens of pages of documents authorizing the surgeries, organ removals, chemotherapy poisons, toxic medications, radiation, clinical trials, etc. Basically your child's life is on the line and they are trying to do everything in their power to save them without killing them. You sign your acceptance, on their behalf of hundreds of side effects and complications now and for the rest of their lives and the understanding that they may kill them in the process. Not the place any parent ever wants to be. I remember asking questions about radiation damage to Julia's reproductive system. They calmly looked at us and said, "She's so small we can't avoid those areas and right now we just want her to live long enough to even have to worry about it." Point taken. It's a whole new reality.
Now that Julia has passed the 5 year survival mark, the chance of her original cancer returning drops off and her chance of secondary cancers caused by treatment climbs every year. It's like changing tracks on a roller coaster- we've come down the huge hill, but now we're ticking up a new track. They compile information and screenings on all the side effects specific to her cancer, surgeries, and treatments- sadly many of them she already has been dealing with for years. As they went over each one they kept saying "She already has that", "She already has that", "She already has that". U.g.h.
Then we had to wait for results to start coming in. Julia met up with Lauren in the lobby. She was one of Julia's favorite Arts for Life volunteers and is now a counseling intern for the peds oncology families. Julia challenged her to a lively fooz ball tournament. Turns out Julia's skills are sharp as ever and she was trampling Lauren in no time. We laughed that fooz ball is part of the skill set these cancer kiddos leave with after living up here for so many months and years.
So I guess the best news was there weren't any big surprises. All of her side effect issues are the same and stable. She is still NED. Her heart damage from the doxorubicin is the same and biannual echos will continue. Her bloodwork looks the same. Her white blood count and neutrophils are still too low and it appears to be permanent at this point- an effect of chemo. Her organs are all good and doing their jobs. Her upper GI, lower GI, and migraine issues are the same and we will continue daily to try and find effective combinations of meds, supplements, and treatments with minimal side effects. The only surprise for us was her urinalysis. The results came back abnormal with multiple numbers all over the place. Just like last year, we have infection without symptoms. We repeated her tests and sent for cultures so we can effectively treat. It is somewhat concerning to find another infection we were unaware of because it is so important to protect her urinary tract to preserve her single kidney health. So we start on new meds and wait for Dr. Hodges to weigh in.
As we were leaving the hospital with our good news, our dear friend Joseph was taking his last breath here on this earth. After valiantly battling GBM brain tumors for the past four years, God called him home Friday evening.
We will forever be touched by Joseph's battle and his amazing spirit. He was one of a handful of children from our "non-cancer life" who were diagnosed after Julia. We were floored by his diagnosis and heartbroken for his family. It truly felt like a violation as cancer crossed yet another line, making it's own rules with those we love. But we will forever be changed by Joseph and the way he chose face life and eventually death. I encourage you to read his mom, Alison's words of his last day and read back over his amazing testimony in previous entries. We appreciate prayers for his parents and 4 siblings as they heal, recover, cope, and move forward in the difficult days and weeks ahead. A flashback to simpler days...
The pediatric cancer world is not an easy one to be a part of by any means. With every victory comes a loss, with every joy a tear; but we have to carry on. For the fighters, the survivors, and all our precious angels we have to look at our lives as a gift and responsibility. We are blessed beyond measure to be able to take a deep breath and celebrate where we are today and how very far we have come. We are so thankful for the gift of life and every day cancer loses and Julia wins. Every time I see her laugh, watch her outgrow another size of clothes, see her learn something new, or just wrap my arms around her and kiss that sweet curly head I know I am receiving a precious, priceless gift every single day. We celebrated with our annual trip to the Dixie Classic Fair. After two solid weeks of rain, it was the first day of glorious, Carolina blue sunshine! Carter was playing in a soccer tournament at school that he didn't want to miss, so Julia invited her friend Claire to come with us as a ride buddy.
