Otto's Warriors: Updates on Otto April 9th, 2017: From Otto's mom, Emily Hello Warriors! I hope you've all had a great weekend. We have been lacking in posts; Otto and mom were battling a nasty cold during scan week, plus an all day power outage on Friday, so it was all we could do to keep up! Luckily, everyone is feeling much better now. Scans went really well last week. Otto made it through his first non-sedated MRI and did pretty well for a wiggly six year old. His CT and MRI both showed nothing new. The MIBG scan showed some improvement in Otto's skull and his hip/spine area, but no change in his right femur and no sites totally cleared. This means that our next stage of treatment will be a combination of immunotherapy and chemotherapy, which is still a somewhat experimental combination. This will hopefully help us clear up those last stubborn areas. Otto will begin treatment again the week of the 24th, so we will spend the next few weeks resting and getting ready. March 16th, 2017: From Otto's mom, Emily Today was a big Warrior Wednesday--it was Otto's last day of radiation treatment!! He even got to ring the big bell while we all cheered for him. It's been a super busy day, as Otto had physical therapy in the morning before a celebratory lunch with Mom and Dad. Then he got to go to "big Powell's" downtown and pick out some new books as a reward for making it all the way through radiation without sedation! He's really earned a few weeks of rest. We will only have two appointments at the hospital between now and the first week of April, so here's hoping he can have some time to just be a kid March 1, 2017: From Otto's mom, Emily Happy Wednesday Warriors! Things have gotten a lot busier over here. Otto started his course of photon radiation to his adrenal bed and other lower bony sites yesterday. He'll have 12 rounds total, and we go up to the hospital every weekday for treatment until the course is finished. He had his follow up appointment with his neurosurgeon today and she said that his incision is healing very nicely and that he looks like he's recovering well. Hooray for that! She is somewhat concerned because he hasn't had any spinal fluid leakage from his nose, so we'll need to see an ENT specialist to check everything out in the space they created with surgery to make sure it's all okay in there and not backing up somewhere. Otto is still on reduced activity for a few more weeks to avoid any possibility of a head injury, so that means he's out of school for a bit even once we finish radiation, but we get a lot of learning time in at home. He was able to get some art time in with CHAP while we waited for our neurosurgery checkup today, and made a super cool dragon! Hopefully radiation will go smoothly so we can move on to the next stage of treatment in a few weeks! We also want to say thank you to whoever secretly paid for the cookie that Otto was eyeing at the coffee shop today; you really made our day with your random act of kindness!
February 8th, 2017: From Otto's mom, Emily Hello Warriors! We have news for you on this Warrior Wednesday. Otto's skull tumor surgery has been scheduled for the morning of 2/14, next Tuesday. He will be admitted to the hospital the day before the surgery to have a more precise MRI done, as well as a pre-surgery procedure to temporarily block off some small facial arteries that may be in the way during the surgery. As this will be a fairly major and lengthy procedure, please check in with Otto's mom or dad before visiting. We can't be sure that Otto will be up for a visit at any particular point. Fingers crossed that all goes well, and hopefully we'll be back home a few days after the surgery.
February 1st, 2017: From Otto's mom, Emily It's Warrior Wednesday! And we've had a very long day of consults at the hospital. Our boy had to have an IV done for a specialized CT scan, and that was quite the ordeal! We did manage to make it to all of our appointments today though, which meant a tram ride both up and down, fun! After consulting with our oncology team as well as the radiation oncology doctor and Otto's neurosurgeon who did his original surgery, we have all decided that instead of moving straight to radiation, it would be in Otto's best interest to surgically remove his skull base tumor. Having less mass in that area will make it more likely for any further radiation or chemo therapy to be most effective at eradicating the remaining cancer cells. The surgery will be scheduled within the next few weeks. Our surgeon is very confident that this surgery will go well with little to no complications. Otto will be admitted to the hospital for recovery afterwards, but otherwise we should not have much on our plate for the moment. On a different note, Otto is so excited for all the hair growth because that means he gets to do something he's wanted to do for years-color it! Hope you all enjoy his new 'do.
December 20, 2016 (From his mom, Emily) We've had some amazing visits over the past few days, sadly I failed to get pictures. Thank you to our sponsor family through Doernbecher for bringing our family gifts, and thank you to the Tualatin High School Sparrow Club for your visit and gifts yesterday!! We appreciate everyone's support and generosity so much. We also had a visit from our good friend Tony up at the hospital. He brought Otto a special gift that he's been wanting for ages- his own electric guitar, just his size!
November 23 at 10:29am ·(From his mom, Emily) Happy Warrior Wednesday!! I hope you all enjoyed seeing pictures from our amazing trip to Legoland. Now we're home and looking forward to Thanksgiving tomorrow. We sure have a lot to be thankful for, because all of our scan results are back from last week. Otto's Curie score dropped from 17 to 12 on his MIBG scan. This means that the number and intensity of cancerous sites in his bones has decreased, and the scan showed no new sites! The size of his skull base tumor has decreased about .5 cm in size! His urinalysis is negative for cancer markers, and his bone marrow is completely clear!! This marks the first time since beginning treatment that all of our scans have showed positive improvement. We aren't getting close to the finish line yet, but we didn't take any steps backwards this time. We will know next week for sure what our next treatment will be and when, so stay tuned and have a happy Thanksgiving!