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May
3
2021

May 03, 2021

We thought it was time for an update on Claire! 

Everyone that has been following along with Claire’s journey knows that she got clear scans in November 2020. She cleared late into her journey and although we are extremely grateful for that, we weren’t content just being done. Many Neuroblastoma families choose to go on to post-maintenance therapies to prevent a relapse. There are currently two options families can choose from; DFMO (which is a pathway inhibitor drug) or a Neuroblastoma vaccine, only offered at Memorial Sloan Kettering in New York City. We know how important the immunotherapy portion of Claire’s front line treatment protocol was to clearing up her cancer, so we felt the vaccine was the best choice for Claire. After many, many phone conversations with Claire’s lead oncologist at American Family Children’s Hospital, we felt Claire was in the best possible place to seek this additional treatment option. 

Ted and Claire left for NYC on April 13. They met the MSK team and on April 15, Claire received her first of seven Neuroblastoma vaccine shots. It is a painful shot and our Claire once again proved her willingness to continue to fight. We didn’t have a choice in any of Claire’s front line treatments. This extra post maintenance therapy was our decision, and it was difficult for us to see how tough the shot was on Claire. Claire traveled to NYC three weeks in a row to receive a shot in the leg each week. MSK warned us that Claire’s leg would have a site injection reaction, possible fever, and leg pain. All of those proved to be true. Lucky for us, since Claire no longer has a central line, a fever isn’t an automatic hospitalization. Claire finished her third shot last Thursday. We go back in June for her 4th shot. Shot #5-7 are spaced out over the course of the year. 

Our trips to NYC were quick but a few highlights were: 

-Flying private for the second and third trips thanks to the Corporate Angel Network. Claire and I were the only passengers on a Gulfstream G550 jet! The pilots warmly welcome Claire on board. After going over the safety protocols, the co-pilot looked at Claire and said, “Claire, this is your airplane today, enjoy it!” Claire made sure she found all the good snacks on board. That’s our girl... she loves to snack! We are so very grateful to the companies that donated their jets and pilot’s time to safely transport Claire to and from NYC. 
-Claire and I had our first Amazon Go shopping experience. Claire felt like we were stealing our groceries. I reassured her by showing the Amazon charges on my phone. :) 

Claire’s 3 month post treatment scans are coming up in late June.  We continue to pray she will be clear. Although we love to travel, I think we are all ready to be home for the month of May. We are looking forward to Claire’s first soccer game since her diagnosis. We know her stamina won’t be the same at 
first, but so grateful she can get back to doing something she loves. She has come a long way! 

Thank you all for your continued prayers and love! We are so blessed to have you cheering Claire on through this journey. 

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March
12
2021

End of treatment!

Last week, Claire had all of her end of treatment scans. It was a long week of waiting for results to come in, but we received the news we were hoping for - No Evidence of Disease!  Claire will continue to get scans over the course of the next few years to ensure the disease has not returned, but we are so very happy that she has continued to remain free of disease. 

Today, after 491 days, Claire got her central line removed from her chest. This event marked the last step in Claire’s cancer treatment protocol. It was a surgical procedure, but it went pretty quickly. Our favorite surgeon, Dr. Le, decorated the bandage as a baby unicorn for Claire - he is very talented!  He also had some very nice things to say to Claire. Just another example of how Claire’s medical team has been so good to her during her journey. 

Claire is excited to swim and enjoy getting back to being a kid.  She will even be able to rejoin her soccer team this Spring. She’s excited to see her teammates and coaches!  

We are very thankful for all of the love and support that we’ve received throughout this 17 month journey. It helped us stay strong and kept us going!  We will never be able to put into words how much that meant to us. 

Thank you all,
The Olson’s 




February
4
2021

Cancer Awareness Day

We have been home for a month since Claire's last hospital stay.  She is doing great! 

She has been busy with virtual school, sledding, building snow forts, dancing, rollerblading in the basement, and even joined a couple virtual soccer practices!

Claire starts her final round of Immunotherapy at home on Monday.  After that we will have our end of treatment scans - currently scheduled for early March.  We pray for continued clear scans.

Today is World Cancer Day and Tuesday was Neuroblastoma Awareness Day. 

We are posting a video to give a small peak behind the curtain of what its like to be a cancer patient (and cancer family).  We originally put this video together for our own therapy to process everything that happened the last 15 months.  We laughed, we cried, but mostly we watched in awe at what transpired over the course of Claire's treatment. 

Claire has no memory of her time in the PICU.  When she saw that part of the video, she let her emotions come out for only the second time during her journey.  Claire gave us permission to share this video with all of you.

Please be aware that portions of this video may be hard to watch  - especially the 8 to 10 minute mark when Claire was in the PICU.  We chose to share this video to increase awareness of the battles all Cancer Warriors are forced to fight.

🎗🎗🎗🎗

January
4
2021

Ring the Bell!!

Today marked a momentous achievement in Claire's cancer journey:
She rang the bell to signify the end of her hospital treatment!  💪💜


Claire has worked so hard and has overcome so much to reach this point.  We are so very proud of her, and extremely grateful for this milestone.


It has been an emotional 14 month journey and today was a culmination of that.  We are overcome with happiness, but we also have a complex mix of emotions.  It is bittersweet because we will not be seeing as much of the AFCH staff that we have come to know and love.  The doctors, nurses, nursing assistants, child life specialists, physical and occupational therapists, admin staff, housekeeping, the list goes on an on.  We will always remember, with the utmost fondness, these heroes that dedicate their lives to helping sick kids.


We were so happy that so many of AFCH friends were able to celebrate with Claire as she rang the bell.  Her primary nurse, Jess, came in on her day off.  One of the residents, Dr. Jo, worked a full night shift, went home to sleep for a bit and came back. Our PICU nurses, Jodi and Emilie, were there! Dr. Olsen came in on her day off as well.  One of Claire's PICU doctors, Dr. Wilhelm was able to join.  And so many more smiling faces that helped Claire on her journey!


It may be hard to hear in the video, but Claire chose the song "Beat It" by Michael Jackson to ring the bell - very fitting! She's getting really good at the moonwalk!


Another quick tidbit:
I was helping Claire get ready for the day today and couldn't find a comb.  She hasn't had a need for one for so long... and I certainly don't need one! We improvised and used a plastic fork to comb her hair this morning.  I think it turned out alright!


I know that many of you are celebrating along with us today.  We feel truly fortunate to have all of you in our corner! Thank you all so much for the love and support!!


Claire did it!

One more round of at home immunotherapy is next, end of treatment scans, and then we evaluate options for ongoing maintenance therapy.  We will send updates as they come.

January
2
2021

January 01, 2021

Happy New Year! 

Claire is just days away from ringing the cancer free bell! Claire was admitted on New Year’s Eve for her FINAL hospitalization! This round 5 of Immunotherapy will wrap up Monday morning. Round 6 of Immunotherapy is oral medications at home. Then we will prepare for treatment end scans. We pray Claire will remain NED. 

This hospital stay has really hit home for all of us. As we drove to AFCH on Thursday, Claire said, “I can’t believe this is the last stay. I’m going to miss my nurses so much.” 

Claire was greeted by her primary nurse, Jess. It’s a bittersweet stay as we are saying our goodbyes and thank you’s to the wonderful people that we’ve spent more time with than our own family and friends this past year. We are continually reminded how lucky we are to have this amazing hospital in our backyard. 

We will post some pictures and videos of Claire’s big day on Monday! 






November
26
2020

Clear MIBG Scans!

Today, we received the news we have waited a long time to hear - Claire’s MIBG scans came back clear!! 🙏🙌 We are overjoyed! We are filled with so much emotion and gratitude to have finally reached this milestone. Claire is on her way back to good health! We have prayed and hoped for this since the day she was diagnosed. We are filled with renewed hope and strength. We are cautiously guarded knowing Neuroblastoma is a relentless disease. But today we celebrate! The journey isn’t over, but our hearts needed to hear these words - clear scans. Claire officially has No Evidence of Disease - NED (the three best letters of the alphabet)!

On Monday, Claire returns to American Family Children’s Hospital for her 4th round of immunotherapy. This immunotherapy has shown to be very effective clearing up her cancer. Round 5 will start the end of December, then we prepare for the end of treatment scans.

Claire has always loved to swim and that is one of the first things she brought up when she heard about her clear scans. She can’t wait to get her central line out and go swimming. She’ll have a few more months to wait, but it seems more obtainable now. 

You all have been following along on this journey and we will be forever thankful for that!

So proud of our fighter! Claire is NED!!! 


November
20
2020

Clear Bone Marrow!

Today we found out that Claire’s bone marrow is negative for Neuroblastoma!  We were so happy to hear the excitement in the Dr. Olsen’s voice when she told us.  We still have MIBG and CT scans next week to see a clearer picture, but we take this as a huge win!  

Claire’s first bone marrow biopsy, over a year ago, showed 100% Neuroblastoma in her marrow. That meant that all of her marrow was cancer. Now she is clear, and we are beyond grateful for that. We’ll definitely have a lot to be thankful for this Thanksgiving!

We still have 3 more rounds of immunotherapy before we complete the treatment protocol. It is wonderful to know that it is working!!

Claire has been so strong and inspiring throughout this journey and she deserves this milestone. Thanks you so much to all of you and have a great Thanksgiving!!

October
28
2020

One Year Later

October 28, 2019 - Claire’s diagnosis day 





365 days ago. A day we will never forget. Claire began her fight this day. She cried as she told her older brother the horrible phrase, “Gavin, I have cancer.” She never shed another tear about having cancer after that. Claire set the tone for this fight. Her fight. When she began losing her hair, people would ask her if she was going to shave it, cut it, or color it. Claire held onto the very last strand of hair until it fell out on its own after her 5th round of chemo in February 2020. (3.5 months after her diagnosis). She did it her way. 




There have been many moments over the past year that have filled us with love, gratitude, hope, and strength. As we look back on a year we never imagined, here are just a few moments worth sharing: 




  • The first time Claire was put under for a bone marrow biopsy/scans/MRI, the Anesthesiologist looked at me as Claire was drifting off to sleep and told me to go get some rest. He proceeded to inform me that this wouldn’t be an easy journey and Claire would need well rested parents to withstand the intense treatment protocol. He wasn’t kidding. One year later and we still haven't seen clear scans.
  • Six days after Claire’s diagnosis, her elementary school had already put in place a plan to ensure her education would be protected. Claire’s medical team was very impressed by the prompt timeline. Claire’s school has gone above and beyond to accommodate her medical needs. 
  • Claire’s home care has always been a team effort. Ted - aka “Nurse Daddy” - has taken the lead role in caring for Claire’s central line. He is also the one to administer the subcutaneous shots in Claire’s leg - needed for the stem cell collection and currently for the immunotherapy portion of treatment. Tiffany - aka "Medicine Mommy" - ensures Claire gets her oral meds and that supplies are reordered in a timely manner.  Gavin even helps out to remind us about the medicine Claire receives on weekends only to prevent a certain strain of pneumonia. Gavin will ask, "Did Claire get her Bactrim yet?” He has been an important part of the home care needed for Claire. 
  • Back in January, Claire and her primary day nurse, Jess planned a prank on a nursing student that was shadowing for a day. Claire and Jess made fake puke out of applesauce, chocolate milk, and saltine crackers. Claire pretended to have just thrown up as the nursing student entered the room. The nursing student approached Claire to record her vital signs. As she moved closer, Claire dipped her finger into the fake puke and ate it! The look of shock on the nursing student’s face made it all worth it! Claire could barely contain her giggles. There can be good times on P4. 
  • This summer in Chicago, Claire and Ted were waiting outside a restaurant for curbside pickup.  A nice woman left her table in the patio to approach Claire and tell her that she is beautiful. This sweet gesture put a smile on Claire’s face. When retelling the story, Claire will say, “How come she told me I was beautiful? I don’t even have hair.” I would love to find this woman and tell her how much that meant to our little fighter. Kindness in strangers is impactful in the eyes of littles. 
  • During a clinic appointment this summer, we were seen by a resident. American Family Children’s Hospital is a teaching hospital so this was nothing new to us. This resident introduced herself and then proceeded to tell us that she was up to date on Claire’s medical chart. “Claire, you are well known around here. You have been through so much. And just look at you! You are a legend.” As we were leaving the appointment, Claire looked up at me and asked, “Mom, what’s a legend?” 
  • As parents, we have watched her go through the toughest of times. Claire has continued to amaze us and her medical team by bouncing back from each bump in the road with her same silly spirit. She never complains only asks, “What’s next for treatment?” 






In the past year, Claire has spent 129 nights in the hospital. Nothing about this past year has been easy, but we have the support of each other, family, friends, and all of you.  Thank you all for the love and support that you have shown - it really has helped us get through this difficult year.




The 3rd round of immunotherapy approaches.  After that we will have another full workup of scans and biopsies. Claire has shown so much strength and resilience that we have to believe that these scans will be clear.