Physically she has changed 😍, but Ariana continues to be a very bright and strong young lady. Goodbye first grade! On to second grade and so much more 😊🎉
On December 17, 2021, Ariana, our sweet 6-year old was diagnosed with stage four Hepatoblastoma.
Physically she has changed 😍, but Ariana continues to be a very bright and strong young lady. Goodbye first grade! On to second grade and so much more 😊🎉
Last week Ariana had her U of I scans as well as her annual trip to CO to meet with the transplant team.
As luck would have it she started to get sick that Monday during her scans, but was well enough to make the trip to CO.
Due to the sickness she had some findings in her left lungs as well as some larger lymph nodes. Dr. D had warned us that the verbiage for the scans might read as such. I was waiting to see if we would get a call, but I'm happy to say no call. Her AFP (cancer marker) came back at 3, which had been consistent with past checks. 🥳
The CO team said they are very please with all the pictures (113 to be exact, Ariana was sure to count during the ultra sound 😊) that they took during visit. Her labs came back good.
Ariana is on her final days of first grade. She did really well for her first real year in school and is ready to head into second grade.
Coming up, labs in a month and new scans in three.
Have a wonderful summer!
One Year Transplantaversary a.k.a. Cancer Free Day!! 🥳🎉🎂
Ariana has been doing so well. Growing hair and losing teeth and making lots of friends. Her labs continue to be great and show no signs of rejection. Coming up, new scans for a continued report of good health. 🤞🍀💪
Thinking of the donor family as they hit there one year of their child passing. Without that liver we might be in a different situation. Every day we think about this family. Every time we hear Ariana's sweet giggles we think of this family that chose to give life at the time of sorrow in their lives. We will be FOREVER grateful to this family. ❤️ We send peace, love and healing to them on this difficult day. Stay strong you saved our little girl's life. 🙏🙏🙏
Dr. Dickens called to tell us officially,
"She is in remission.'
To hear, 'remission' for the first time, is something amazing!
Ariana had her scans today.
The MyChart scan report reads 'fine' and 'none' in each section. I will call that a clean report for a healthy little seven year old.
Just a few more months and this little lady will be one year cancer free.
This old lady made it 100 days in her first year in school!
Ariana has been doing well. She has had illnesses, but her body has done well at fighting them off, and her blood levels have stayed in the normal range. 🥳 New scans coming up in February.
Today marks one year ago, diagnosis day.
Although we are still awaiting official word from the doctor. I think it is safe for Ariana to share some special news.
Happy Holidays! 🎄⛄
We some unofficial news to share.
First the great news. The lessions (IA team and CT report) show that they are no longer visible! 🥳 Such great news. Only catch is CO said they never saw lessions just lymph nodes. IA doctor says those lymph nodes are necrotic meaning basically dead. If there was cancer there then they would look more fluid filled. We take this as a win and can breath a sigh of relief. As long as CO agrees.
Second news is about her lungs. When we did six month scans they had concerns but we're hoping it was infectious disease related (viruses/colds). They wanted to wait until early December (to get new scans) to see how they looked at that time. Well just from the doctor looking he said they look worse than before. We are still waiting on the MRI results to know more. Ariana has continued to have colds and coughs since the six month scans. I am cautiously optimistic for it to be infectious disease related .
Dr. Dickens said he wants to review everything with his team and the CO team and will let us know more in a week or so. I imagine that time will be a little longer since CO will have to have their people review the scans and have a meeting.
More waiting and more patience. Check got it.
I am so thankful that we are lucky enough to have two hospitals and a bunch of very smart humans in our corner.
Time will tell. Who knows maybe Santa will get to tell us. 🎅🤶
Have a wonderful week friends!
It's new scans day!
All the feels today.
I am continually amazed at how well Ariana does with all the pokes and the scans. It shouldn't be a 'normal thing to do' for a seven year old. Yet, for her it is.
We are coming up on our 'one year ago' day. It's surreal. I find myself remembering specific moments the few weeks before I took her in to see what was going on. Karl and I had talked and thought maybe appendicitis. I remember thinking please don't let it be that. Now I wish it was that. I remember going to Oliver's band concert with her and having her lean into me because she just wasn't feeling right. So many memories.
We can't change the past, but we will begin to move forward and she will continue to grow into a beautiful, smart, and kind little lady.
Updates will come when we know more.
Thank you for sending lots of lover her way today. Happy Friday!
Happy Thanksgiving from all of us to you!
We will be forever grateful for all the kindness and love we received this last year.
We hope you all have a day filled with laughter and love.
Here is a sweet message from Ariana 🥰
Sadly the horseback riding had to get rescheduled due to the high winds today.
6 Months Cancer Free! 🥳🌈🌞🎉🎆
We say this with the utmost belief in the power of positivity. 🙌👊
Today she celebrates 🥳 this huge milestone! 🥇🏆🏅
We got the report on Ariana from the CO team.
First, the lesions are actually lymph nodes that are on her liver. After reviewing her first two scans (first one after the transplant and second one at three months) they are able to see that they were present in both of those scans. The six month scans show that the lymph nodes have become larger and look abnormal which is what is causing the alarm.
Both IA and CO cautiously agree that is does not seem to be Hepatoblastoma. The lymph nodes do not appear to be growing at a fast rate like Hepatoblastoma does. As well as the AFP marker being normal.
So what does this mean? At the moment we are unsure. Both teams agree to doing new scans in six weeks vs. the nine month mark to see how they look.
The idea is that maybe these lymph nodes are just doing their job and working hard to fight for her. Ariana has continued to constantly have a cold or a cough as well as mouth sores. In six weeks she could be more healthy and the Lymph nodes will have shrunk. This is what we are going with. All the positive.
The alternative is that the lymph nodes could have cancer, a different cancer. Well that's just not going to be the case here because this little warrior does NOT deserve to fight two kinds of cancer in under a year. So as I stated earlier we are staying positive. The lymphs are working hard to keep her healthy!
The plan after the scans in December is to see what they are doing. If they decide to grow or change then Ariana will have to do an open biopsy. One of the lymph nodes is located in a tricky spot next to a vessel, so this would require the more extensive open biopsy.
All this is moot point because the lymph nodes are just doing there job!
Ariana's team of prayers, love and support please keep all the good vibes coming her way.
Fyi, we do not plan to tell her anything unless it becomes an issue, and it's not going to be so it's fine.
On a more fantastic note. Ariana is getting to go horseback riding on Sunday for her birthday wish! Pictures to come! 🐎. I also forgot to mention we pierced her ears for her birthday after the last scans. She loves them!
Update on Ariana.
Her MRI came back with two small lesions on a tube, for a lack of using scientific doctor terms. IA doctor is optimistic due to her AFP number. However, because it's near the area from the transplant they want CO opinion. We are currently waiting for a call from them.
Let's use our power of healing and positive thoughts so that these lesions will be nothing of concern. 🙏🌈🌞🙏
Amazing people doing amazing things ❤️❤️❤️. THANK YOU!!!
Update on Ariana's scans today.
Her CT came back showing new nodules in her left lung. The results had the words, Infectious virus Inflammatory. A talk with Dr. Dickens confirmed that he thought they were not cancerous, because of a couple of different factors, but he wanted to wait for the AFP marker to be sure.
We got the results back and marker was a 3! Anything single digit is cancer free. Phew! Perhaps related to her fevers and colds. Dr. Dickens will do another set of scans again mid December to see how she looks then.
For today we celebrate the AFP. Three letters with a whole lot of meaning.
Enjoy your night and thank you for the love and support! ❤️❤️❤️
Look at these sweet girls helping their friend. Thank you girls! ❤️🙏❤️.
Their mother, Cara, has been a tremendous help to us during this entire journey. She has become like family to us and always willing to help at a moments notice. Thank you Cara for all you do for us! We love you 💜💚❤️
Today is Ariana's six months post transplant CT/MRI and labs day. I think they will also check her AFP marker.
Ariana has continued to get random high fevers that never last. She also has been getting mouth sores consistently. The sores are probably the hardest for her making eating and brushing teeth difficult. They think that the anti rejection med she is on are causing them. After labs today the CO team will decide the next steps.
Here is to good scan/lab results 🤞 and to a beautiful Friday. Enjoy your day and live it to the fullest! 🌞🌈💐
There is this neat program called Monkey in My Chair. Ariana has one for school in the event that she has to be gone. Yesterday they were able to use this monkey while she was out. Here is the report...
'Our students sure missed Ari today and took full ownership to bring the monkey “Bananas” with us during the day. I wish I would have captured more photos! At one point, one student had brought Ari’s iPad to her desk during that rotation and put Ari’s headphone on the monkey. Here is the only picture I got around to take, friends sharing their toys with Bananas. We sure missed Ari and are hopeful the surgery went well!'
Absolutely love how much the kids in her class embraced Bananas. Ariana is so lucky to have such a wonderful supportive teacher and classmates this year.
Port - 0
Ariana - 1
She rocked surgery per usual AND she got to keep the port.
It's a good day!
We hope you enjoy your day too!
Today is port removal day!!
Ariana said she is going to ask for them to take a picture of the port after they take it out. 😊. Always so curious 🧐❤️
The birthday girl made it another year! Happy 7th Birthday Ariana!! You deserve the absolute best that life has to offer. 🥳🧁🎁
Today Ariana's school did a walk for childhood cancer awareness. All the kids were encouraged to 'Be bold and wear gold'. They did not disappoint!
As rare as Ariana's cancer type is, there was another six year old boy that had Hepatoblastoma when he was just a baby. Pierce has been a cancer survivor for five years now.
We are so thankful to the school for bringing awareness on childhood cancer and spotlighting Ariana and Pierce!
Ariana owns the runway! She is my Wonder Woman!! 🌟🦸♀️
This was such a fun experience. I learned my kids aren't shy. So much fun!!
Thank you all for loving our sweet warrior Ariana!
When Cota first talked with me about their program they asked me for the amount we would like to raise. I had no clue. I said maybe 10k??? They told me that in their experience 50 to 75k should be raised for her type of transplant. (Gulp) So we said okay to putting 50k as the goal.
We are so grateful to have reached our initial goal of 10k. We don't know lots of people and I thought this goal would be impossible. Here we are and this sweet Ariana now has money to use when she is a grown woman living on her own still doing the medical stuff. We have been so blessed to have met so many amazing people. The lives and hearts that Ariana has touched has opened our eyes to what life truly is about. Our family is forever grateful to all of you for making her life easier as she grows into an adult. If I could hug every single one of you I would! ❤️🙏👐🤝🤜🤛👊🌟🔥
Update on Ariana today...
She had a great day and no fever! Phew!
On Sunday Ariana and her siblings will be participating in the Runway for Hope to help Dance Marathon raise money. The Dance Marathon team is such an amazing group of young adults that are changing lives and making the cancer journey a little easier for the kids. We cannot wait to help them in reaching their goals. Pictures to come!
Update! We are home and she is sound asleep. Her AnC was in the 6000 so there was no admission needed. 🙏. They gave her an antibiotic that lasts for 24 hours. If she gets another fever over 101 tomorrow evening then we will go back and do it all over again. They also did a full panel to check for viruses to include the dreadful covid swab. All came back negative. 🙏. Her fever once again is a mystery.
Once we get the port removed (September 30) fevers can then be reported to liver transplant team in CO and they will decide if Ari will need to go to the doctor. So on a night like tonight it is more likely we would just keep her home and monitor her. That will be so nice.
Thank you for your continued love and support!! Now I'm going to put her in a bubble for the next two weeks so she can get the port removed. When we were talking about the port removal she said 'Im going to ask them to take a picture of the port when it is out so I can see it.' Always so very curious 🧐❤️
Back at the hospital tonight for 103 fever. Yesterday that eye started to look funny again. Ari has had a nose cold and cough for several weeks. Today the fever showed itself. Let's see what the labs bring 🤞
My girl is 1 in a million! So 🙏🙏🙏
It’s official! The U.S. has reached an extraordinary milestone: 1 million organ transplants! Visit LivingItForward.org and join us in honoring the gift of life and celebrating lives transformed. 💙💚🎉
Continuing with Childhood Cancer Awareness Month facts and figures... the average age of a childhood cancer diagnosis is 6 years old, compared to 66 years for adults’ cancer diagnosis. Please spread the word.
So fun! Ariana did great!! She said her heart was pounding so fast. ☺️⚾💪
All ready for the big first pitch ⚾. Thank you for bringing awareness!
Ariana loved watching the wave from home! Go hawks!
Today Ariana has a follow up appointment after her hospital stay. She has been doing great and enjoying school.
Yesterday she had a psych evaluation done to see if chemo has effected her mentally, neurologically or emotionally. We are happy to report the evaluation was positive. So 🙏.
Tomorrow is the first Iowa game. Ariana really wants to watch the wave. After staring at the empty field for the last nine months I don't blame her. We are grateful though to not be on the inpatient side. One more picture in front of the field as it's being prepped for the game.
200 Hawkins Drive
Iowa City, IA
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