Sebastian’s Story

Site created on March 21, 2024

In late February Seb began having intermittent low grade fevers and complaining of back, stomach, and leg/knee pain.  We had influenza go through our house so we thought he was dealing with the same thing and just couldn't kick it.  The first week of March he returned to his normal self and we thought we were in the clear.  When his symptoms came back we took him to the doctor to make sure there wasn't some other underlying issue.  On March 11th the doctor found an ear infection and we were given an antibiotic - we assumed this would fix everything as we had an answer.  After a couple days of antibiotics he was acting normal and even running around playing in the park.  We had two good days and then things went back downhill.  He was refusing to walk or stand still so I knew something more was wrong.  On March 15th we took him back to the doctor for testing.  We got a call on March 18th with the results of his labs and were told we needed to meet with his primary the next day.  On March 19th we met with our primary doc in the morning...since she didn't have a good answer for us and could tell something was wrong she referred us to Iowa City for further testing.  By that night we had an MRI, x-rays, labs, and were checked in to the U of I Children's Hospital.  On March 20th we got the news we feared - Seb was diagnosed with B Cell Acute Lymphocytic Leukemia (ALL).

Newest Update

April 29, 2024

Journal entry by Kayla Burke —

Last Thursday Sebastian had labs drawn in Waterloo to check blood levels before we would go to Iowa City to start the next phase of chemo. The results of his labs showed good counts, but his neutrophils (type of white blood cell, essential to immune system) were just below the threshold they were hoping for. With that, they delayed the next phase of chemo one week to give his body just a little more time to recover.  We are scheduled to go to Iowa City this Friday now, as long as blood counts are good on Thursday. 

As expected, this past week and a half of being off steroids has been wonderful for Seb. He is gaining more and more strength back in his legs and hips which were affected the most, and beginning to walk again! A week ago he was barely taking 5 steps while being supported with two hands. As the week went on he graduated to only holding one hand for balance, to now recently being brave enough to walk completely on his own.  The daily progress amazes me and shows me just how strong and determined this little guy is!
Read More of the journal titled "April 29, 2024"
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