Elliott's Brave Battle

Sweet Elliott is checked back in to St. Luke’s for round three of the regular dose chemo. Just like his last rounds, he should be admitted for 5-7 days and then be able to go home. His team plans to do a repeat swallow study before he leaves as it seems like he is doing better and better. Fingers crossed that goes well and he can start adding back in some real food/drinks to his diet.

If he fevers while home, he may need to readmit for short stays, but otherwise the rough timeline has him starting the more intensive chemo treatments at the end of August. Before starting those, the team plans to do full scans and tests to ensure the cancer is responding to the chemotherapy and isn’t resistant/growing before moving forward with the additional treatments.

Amelia starts school in just a few weeks, so there will be a big adjustment with starting that routine amidst all of the upcoming treatments. Please continue praying for the entire family 💙

A week later & we still haven’t hit counts! Thankfully the team doesn’t seem worried, and we will check again Thursday. This means that last week we were able to make it to see the ophthalmologist (eyes) & this week we will be able to see the pulmonologist (lungs), gastroenterologist (belly), speech/feeding therapist & occupational therapist.

The ophthalmologist believes that the “stretching” of Elliott’s optic nerves is just leftover from the pressure in his brain that existed at diagnosis, but we will follow up again in a month to ensure that it hasn’t changed/increased. We are so grateful for the extra time we have had at home together as a family while we wait.

We went in today expecting to be admitted for our third round of “standard” chemo, but knew that Elliott’s body may not have fully recovered from the last round (specifically his neutrophils - a part of his white blood cells). His labs this morning showed he needs a little more time before starting again, so after a FULL week of appointments and transfusions last week we are excited for a few quiet days at home. They did give the ok to stop the IV antibiotics, so hooray for no more late night & early morning medication alarms! We will recheck labs Thursday and if they are still not high enough then we will recheck again next Monday. The more intensive treatment starts at the end of August, so we will take any time at home that we can get.

Last week his hearing test showed no damage from the chemo thus far - Hallelujah! It will be checked once or twice more before his full treatment is completed. His vision exam showed some change to the edges of the optic nerve and his left eye’s prescription increased fairly significantly. We are waiting for a referral to ophthalmology to get more details on the nerves, but what they observed in the optometrist’s office is typically due to increased cranial pressure - which we know he had at diagnosis.

Elliott has been home since Friday evening but his schedule has been packed with appointments - 9 of them just this week alone. He’s had physical therapy, a g-tube change, three transfusions and another will possibly be done tomorrow. He will also have a vision and hearing test tomorrow, the first since having the tumor removed and since starting chemo to see if either have been affected thus far.

Nausea continues to be an issue even with anti-nausea medication and earlier this week his team swapped his feed supply out for pedialyte instead which he seemed to keep down easier.

The current treatment plan calls for three doses of regular chemo and then three doses of a higher level of chemo. Elliott is finishing up the cycle of his second dose of regular chemo and will admit back to the hospital likely next week to start round three, as long as counts are where they need to be.

Even with everything going on, Elliott is still our sweet happy silly boy. Amelia has had some fun days going to the zoo, swim lessons and Wahooz, and Kasey and Tate are incredibly grateful for all of the ways both kids are being loved and supported right now.

Continue to pray for strength for Elliott 💙