It has been a strange few months for Julia's health. After all the kidney craziness of the fall and winter, we were relieved to get positive results from her January tests. She has been doing well with everything. We are working on getting her out of nighttime diapers, but overall she has been doing great. She is finally in a better place emotionally and has been more peaceful, calm, and joyful than we have seen in a really long time. Sadly, right about that time a new pain surfaced on her right side in between two of her ribs. She had been complaining of belly pain on and off for a few weeks. There are about a dozen reasons why she would have belly pain- the cancer kids reasons: her radical nephrectomy, scar tissue, adhesions, abdominal radiation, bladder issues, cecostomy issues.... and then all the normal kid reasons besides. I don't generally get alarmed when she has belly pain. We just wait it out until some other symptom appears.
After complaining on and off for awhile, she started having constant pain and stopped sleeping. That is always the telltale sign with her. She can handle most anything during the day, but at night it's different. She rarely complains of pain because she knows that lands her on an exam table every single time. After two long days of no sleep she was crying for over an hour from the pain. Being a single kidney patient has a very unfortunate side effect... no good pain treatment meds. She is allowed to have tylenol and if that doesn't work, codeine. If those don't take care of it she has to go to the doctor for narcotics. No motrin, no anti-inflammatories, and no nsaids. Not fun. She continued to cry and we knew it was time. Of course it was 8:30pm so it meant we had to go to the ER. Poor JuJu was pitiful...
The doctors and nurses at the Brenners ED were amazing. Dr. Mary McWilliams and Nurse Stacey were so great with her. They jumped into action, got caught up on her history, and started ordering tests. I have to say for the first time in 3 years, relapse was not the first thing on my mind. Unfortunately it was the first thing on theirs. They were concerned about relapse, gall bladder, and kidney issues. So the testing began.
It was a long night. We were very excited to see they have added ChildLife staff to the ED. Haley walked in with a new puppy for Julia. She already knew about us from talking to others at the hospital and knew what Julia liked. Does it get anymore incredible?! She played with her, talked her through her stay, and even had beads for her Beads of Courage. Nurse Stacey did a great job with her IV and Julia didn't even flinch. So proud of her!!
There weren't any huge red flags in the results, so their best guess was some sort of muscle strain or tear. They sent us home around 3:30am with vicodin and told us to follow-up with her doctors. The next two days the pain was gone. It came back on Friday, Staurday she didn't get off the couch, and Sunday we were in the peds office. They repeated all her labs and x-rays. Their biggest concern was she had decreased breath sounds on that side so Dr.T decided to treat with antibiotics for atypical pneumonia. Pain continued for a few days and then went away for almost five. It seemed she was better and then it was back. She had follow-ups with Dr. Lin and Dr. Fortunato anyway so we decided to see what they thought. (Sadly, this was her last appointment with Dr. F before he moves to Denver :( We will miss him so much! He will now be treating her by email. Not the same.) Both docs were both pleased with her other progress up to this point and couldn't find a cause for the pain. Tim eto call oncology.
They asked us to come in so they could see her. It was an anxiety filled day as all the what-ifs battled for a foothold in my mind. While we waited for Dr. McLean, Julia was captivated by the painting on the wall. It has a story beside it and is full of all sorts of secrets and surprises- so cool!
Dr. McLean came in and caught up on her issues. He checked her out and was stumped. We pulled up all the x-rays she has had done this month and some past ones, too. He turned out the lights and we sat in the dark, staring at the screen, zooming in, zooming out, asking questions, comparing, and scratching our heads. One of her ribs looked a little suspicious in that area, so he decided to go downstairs to pow-wow with radiology. After about an hour he came back up and met us in the playroom.
They don't know. Radiology does not think they see anything concerning. No one can explain the pain. So... we wait. She can still take vicodin if she needs it. We are all still hoping it is a muscle issue that resolves on its own. And if the pain does not go away, or comes back, there is a CT machine in the sub-basement with her name on it.
Julia was excited that Sadie, the therapy dog was visiting. They spent much of the afternoon together. Julia loves to help her owner with her training. Here they are playing hide and seek with one of Sadie's balls...
Our time at the clinic was obviously designed by God for a reason. While we were hanging out in the playroom, a mom came in pushing her teenage daughter in a wheelchair. She introduced herself and asked when Ms. Stacy would be back. We started talking and she began to share Hayleigh's story. At the age of 5 she was diagnosed with ALL and developed CNS. After 3 long years of treatment she was cancer-free! She struggled to catch up in school but by the time she reached high school she was on the honor roll and loving life with her puppy, horse, family, friends, and her senior year of high school. A few weeks ago she started to feel really strange and lost control of her arm. They took her to the ER back home in WV and after much misdiagnosis, they found a glioblastoma brain tumor. The tumor not a relapse. She has a new cancer caused by the chemo drugs that saved her life 10 years before. In the pediatric cancer world the farther you move out of treatment your relapse chances drop off more and more. But at the same time a sickening new monster is jumping on board and your risk of secondary cancers rise each year.
Hayleigh had a brain surgery two weeks ago. They removed the tumor, confirmed it was cancer, and gave her 9-12 months to live. As mom and I sat and talked she was giving me the bad news on her phone screen. She hasn't had the heart to tell Hayleigh yet. As this young girl struggles to move her arm again, learn to speak, try to process thoughts, and hopes to walk- she just couldn't tell her. As I smiled and encourage her in how well she was doing, inside my heart was screaming at the unfairness of it all. Screaming at the pathetic lack of funding for safer drugs. Screaming at the damage all these treatments does to these young, developing bodies with a lifetime of living left to do. Screaming that death is looming for another child. Please pray for Hayleigh, her mom, and her 11yr old brother. When she has healed from her brain surgery, she will begin brain radiation and chemo to try and keep this monster in check. We are praying for a miracle and for her complete healing.
Before we left, we had a chance to join Ms. Betsey and Rima at the art table. It was just the encouragement my spirit needed. Sweet Rima is battling PH+ALL. Just a year ago she developed meningitis, had a stroke, and was paralyzed on one side of her body. They did not expect her to make it. And there she sits! Walking, talking, playing the guitar, and attending school. Take that cancer!!
Julia has been doing well the past few days. She has not had pain now for two days and we pray it is gone for good. The gift of cancer-free days of NED is such a precious gift of grace. We will continue to hold it with humble gratitude, joy, and HOPE. We are blessed. Thank you for all of your prayers!
After complaining on and off for awhile, she started having constant pain and stopped sleeping. That is always the telltale sign with her. She can handle most anything during the day, but at night it's different. She rarely complains of pain because she knows that lands her on an exam table every single time. After two long days of no sleep she was crying for over an hour from the pain. Being a single kidney patient has a very unfortunate side effect... no good pain treatment meds. She is allowed to have tylenol and if that doesn't work, codeine. If those don't take care of it she has to go to the doctor for narcotics. No motrin, no anti-inflammatories, and no nsaids. Not fun. She continued to cry and we knew it was time. Of course it was 8:30pm so it meant we had to go to the ER. Poor JuJu was pitiful...
They asked us to come in so they could see her. It was an anxiety filled day as all the what-ifs battled for a foothold in my mind. While we waited for Dr. McLean, Julia was captivated by the painting on the wall. It has a story beside it and is full of all sorts of secrets and surprises- so cool!
Julia was excited that Sadie, the therapy dog was visiting. They spent much of the afternoon together. Julia loves to help her owner with her training. Here they are playing hide and seek with one of Sadie's balls...
Hayleigh had a brain surgery two weeks ago. They removed the tumor, confirmed it was cancer, and gave her 9-12 months to live. As mom and I sat and talked she was giving me the bad news on her phone screen. She hasn't had the heart to tell Hayleigh yet. As this young girl struggles to move her arm again, learn to speak, try to process thoughts, and hopes to walk- she just couldn't tell her. As I smiled and encourage her in how well she was doing, inside my heart was screaming at the unfairness of it all. Screaming at the pathetic lack of funding for safer drugs. Screaming at the damage all these treatments does to these young, developing bodies with a lifetime of living left to do. Screaming that death is looming for another child. Please pray for Hayleigh, her mom, and her 11yr old brother. When she has healed from her brain surgery, she will begin brain radiation and chemo to try and keep this monster in check. We are praying for a miracle and for her complete healing.
Before we left, we had a chance to join Ms. Betsey and Rima at the art table. It was just the encouragement my spirit needed. Sweet Rima is battling PH+ALL. Just a year ago she developed meningitis, had a stroke, and was paralyzed on one side of her body. They did not expect her to make it. And there she sits! Walking, talking, playing the guitar, and attending school. Take that cancer!!
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