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Talan

Looking at Talan, you would never know that he has had such an incredible journey in such a short life

His starts out like so many others; he was a typical three year old little boy, full of life and ornery as ever.  In August of 2009, Talan started complaining daily of headaches and vomiting when he would wake up in the morning and at nap time.  I also noticed that his balance seemed to be a little more off than usual.  After a few days of thinking he was battling some kind of flu, I made an appointment with our family doctor to have him checked out.  After doing an examination, she said she thought it might be juvenile migraines or an inner ear infection, but wanted to send him to Children’s Hospital for an MRI just to rule out anything else.  Let me tell you now that nothing could prepare me for the “anything else” that was found. August 24, 2009 is a day that my family and I will never forget.  

We got to Children’s Hospital bright and early for the MRI.  I held his hand as he gently drifted off to sleep for the scan.  We were told it would take about 45 minutes to complete. Call it Mother’s Intuition, but as we neared an hour and a half, I had a terrible knot in my stomach. When they finally called us back, they took us into a little room and told us someone would be with us shortly.  A few minutes later, we met Dr. Foreman (Neuro-Oncologist) and two of his associates.  The image they pulled up on the computer in the room is forever burned into my memory, my little baby’s brain, with a large white spot in the middle.  I don’t remember much that was said after I saw it, I just knew it was bad…and life as I knew it 15 minutes earlier was turned upside down.  They said that it was operable, which was good; but that it was on the brainstem, which made surgery tricky.  The tumor was pretty large, and with where it was located, it was partially cutting off the circulation of the spinal fluid between the brain and spinal cord.   Talan was admitted to the hospital right away and they started administering steroids to help with the swelling in his brain.  They had his surgery scheduled for August 26th and said it would take about 6 hours. 

The morning of surgery is a blur.  I remember sitting on the bed with Talan as they wheeled us down to the OR.  This is probably the first moment I realized just how amazing my son is, because up until the moment he fell asleep when they put him under, he had me laughing, just being his silly self.  His surgery started at 1:00 pm.  We received hourly updates from the nurse in the OR, and 12 hours later we got a call that he was out of surgery and up in PICU.  His surgeon said that they were able to remove all but about 10% of the tumor.  The part that remained was entwined with the brainstem and could not be removed; however, Talan had a good prognosis but had a long recovery road ahead of him.  The biopsy on the tumor came back a few days after surgery, and confirmed what Dr. Foreman had predicted.  Talan was diagnosed with a Grade 1 Pilocytic Astrocytoma.  

Talan spent a few days in the PICU fighting fevers and discovering he was unable to do the basic functions he was accustomed to.  Because of the location of the tumor, the biggest affect it had was on his motor skills; walking, talking, swallowing, balance and coordination.  It was so heartbreaking to tell my son, “I love you,” and watch the frustration and confusion in his face because he couldn’t get the words he had said countless times before, to come out of his mouth. Eventually Talan moved from the PICU back to our original in-patient floor.  He began physical and occupational therapy, and met with a speech therapist, who placed him on a special diet with thickened liquids to prevent choking.   He had to be put back in diapers, which he was not thrilled about, to say the least.  He also had to use a wheelchair whenever he wanted out of his bed.  The surgery left him with a drain tube in his head that the nurses monitored regularly, and eventually that was removed.  They performed several MRIs during our stay to show what was left of the tumor, as well as monitor the circulation and re-absorption of spinal fluid in his brain.  Talan was not the most cooperative when it came to his therapies, but the nurses and therapists were so patient with him, and never pushed him to do anything that would upset him.  The turning point of his recovery came with a visit from his day-care teacher, her son, Teagan, and her husband. Talan got down on the floor with Teagan and played with a ball and other toys, and was able to do some of the exercises his therapist was trying to get him to do, without even realizing he was doing it.  I was able to catch it on video, and showed the Physical Therapist when she came by to check on him.  That was a very happy day!  

Talan was released from the hospital on September 10, 2009.  We were both excited to be going home!  Talan still had a long road ahead of him, but his doctors felt that he might respond better to therapy in his own environment.  Slowly, all of his basic functions improved and he was back to eating, talking and walking on his own.  Talan had MRIs done every three months after his surgery.  The first few were okay, showed little to no change in the tumor.  November 2010, however, was much different than the prior scans.  

As Talan’s brain healed from the resection, the residual tumor (which was slightly bigger than previous scans) had split into two; one still on the brainstem, and one off the brainstem, a little higher in the back, lower section of his brain.  Both were still small, but Dr. Foreman felt that the best course of action would be to start a low dose chemotherapy treatment.  The chemo treatment consisted of two drugs that would be administered through a mediport in Talan’s chest, and would last for 58 weeks: 10 weeks to start and then he would have two weeks off; go back for four weeks and then have another two off, and so on.  He had MRIs every three months throughout his treatment to monitor the affect the chemo had on the tumors.  

Talan had very little side effects from chemo for most of his treatment, rarely got sick, and only had thinning hair.  However, in August of 2011, he developed intolerance to one of the chemo drugs, and he was admitted to the hospital for overnight observation, and a new drug was used from that point forward.  His scans showed that the chemo was working, and in November of 2011, he was able to come off treatment and the mediport was removed.  MRIs were performed every three months from the end of chemo until December 2012, at which time, Dr. Foreman confirmed that the tumors were stable and had had no significant growth during that year, and said they would wait six months to do another scan. 

Just shy of 2 years later, in November of 2013, a routine scan showed that Talan’s tumors were growing again, and Dr. Foreman concluded that treatment would be inevitable, but wanted to wait another 3 months to see what the tumors would do. In April of 2014, it was determined that the best course of treatment would be a clinical study using an oral chemo to treat his tumors. So far, he seems to be tolerating the treatment pretty well. 

Looking at Talan, you would never know that he has had such an incredible journey in such a short life.  He truly is my hero, and I could not be more proud of what he has overcome.  His fight is far from over, although, I like to believe the hardest part is behind him.  He will always have challenges that most other kids will not.  He will have to try a little harder in almost everything he will do.  I am just thankful that he has the opportunity to live a long, happy and successful life…these opportunities may not have been possible without Dr. Foreman and his team, or without the support of The Morgan Adams Foundation. 

Thank you