Henry’s journey started out with what we thought was a simple case of Croup. After weeks of follow up visits, steroids, nebulizer treatments, and labored, noisy breathing, Henry had a well-child visit where an x-ray of his chest was done, and came back clear.
The next day at daycare while sitting at his table waiting for lunch, Henry turned blue and started gasping for air. He quickly recovered, but we knew something wasn’t right. We were able to have him seen right away by his pediatrician, where he had an x-ray of his ears, nose, and throat. The radiologist noted “something” and recommended him to be evaluated at Children’s Hospital of Wisconsin - Milwaukee as soon as possible due to the combination of noisy breathing, turning blue, and “something” noted on the x-ray.
We immediately drove down to Children’s Hospital of Wisconsin - Milwaukee, where Henry was admitted for observation and a bronchoscopy was scheduled for the next morning. Overnight, Henry did well, laughing and smiling like it was just another night at home.
After saying our goodbyes, Henry was taken down the next morning for his bronchoscopy. While receiving general anesthesia, Henry’s airway collapsed and an OR code was called. He was quickly intubated and stabilized, requiring high amounts of pressure to keep his lungs open. After his bronchoscopy, he was taken to CT, which showed a large posterior mediastinal mass measuring 4x6x6 centimeters involving his trachea, esophagus, heart, lungs, and spine. Most urgently, the mass was pushing closed Henry’s airway and when he was no longer working to breathe on his own and keep it open, his airway completely collapsed.
Henry was transferred to the PICU where he remained completely sedated and ventilated due his extremely critical airway. Due to this, he was not stable enough to have a biopsy or MRI to help in determining the type of cancer he has. The plan was made to give him an “emergency” dose of chemotherapy, with hopes to reduce the size of his tumor, and do a repeat CT in 48 hours.
**I started doing journal entries after this point, so continued updates will be there.
Thank you everyone for the love, support, and prayers for Henry and our family. There is not a doubt in a mind they are helping our sweet Henry.
A quick Henry update— he’s doing great! He had his 6 month off-treatment follow up CT and MIBG and both looked good. There is still a very small area of tumor that is active, but his oncologist is very optimistic it will continue to fade with time. He will continue to be monitored closely for the first year and then hopefully his scans will be spaced out!
Thank you everyone for the good thoughts and prayers as Henry went into this set of scans!
Patients and caregivers love hearing from you; add a comment to show your support.
Help Henry Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like Henry's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
