Crowning Victoria: Karing for Keegan

I love how the blogging world brings somewhat random strangers together. You find a common interest or cause and just like that, you've got a whole new group of friends. I am amazed by the support one can find, and today I'm looking for support for a sweet baby and his family (with an added bonus of GiveAways).

The Chupp Family needs our help. Their little boy, Keegan, has Medulloblastoma, a type of cancer very rare in babies. Please read the story of Keegan, as told by Beth -his mother, and how you can help (with incentives of many prizes and how to enter, listed at the end!)

Keegan Thomas Chupp was born September 23^rd, 2009, six weeks premature. Immediately upon birth the doctor knew something was not right. His head measured off the charts and he had extra fingers and an extra toe. Within hours they were running blood test upon blood test. They found he had a stroke in utero and we already knew of the extra gallbladder pre-birth. Before leaving the NICU on October 6^th, we had multiple CT’s, an MRI and an EEG. We were discharged with an appointment at Riley Hospital for Children almost immediately.

On Friday October 9^th we were scheduled to see a neurogeneticist named Laurence Walsh. Upon consulting with Dr. Walsh, we learned our baby had an overgrowth syndrome. They thought at the time it was Simpson-Golobi-Behmel. We left his office feeling very defeated but trudged through the first months of parenthood like any normal couple.
Keegan was monitored with CT’s, quarterly blood draws for AFP (Alpha Fetal Protein) levels which measure for different cancers and MRI’s . By January; at his 4 month appointment we thought we were in the clear. Our Pediatrician measured his head it was in the upper 40’s but not too worried at that point. We continued to get CT’s and blood draws for the AFP levels, his levels did finally come down to a normal range.

On March 29, 2010 we went for Keegan 6 month appointment and found his head was all the way up to 53 cm in circumference. Our Pediatrician became concerned and ordered a new set of blood work and CT’s. We were then also scheduled to see many specialists in the coming months.
On April 8^th we went and had the CT that started our whole nightmare. I got a call only hours after the test; he had fluid on the brain, not exactly what we were expecting at all! We thought we would go in like EVERY other time and it come out fine. We were immediately scheduled to see Dr. Ackerman at Riley on the 14^th. Upon her work up, she was not comfortable sending us home and scheduled a shunt to be placed for his Hydrocephalus the next day. The first shunt was placed successfully on April 15^th, 2010 and we followed up with her a week later and she gave us the free and clear; see you in October she said!

On Tuesday the week after we got the “all clear” Keegan started vomiting when in the upright position. By Thursday, on the way home from our Ophthalmologist appointment he projectile vomited 5 or 6 times and then went unconscious. I called 911 because my sister and I were in route to my work. We were taken to the ER where the doctors and nurse told us that it was only viral and to give him some Pedialyte and start on the BRAT method the following day. When his symptoms didn’t get any better and he started to eat less and less we took him back to the ER. After a couple of CT’s and X-RAYS, we were told that he had a bowel obstruction.
We were Life Lined to Riley in the very early hours of my first Mother’s Day.

They knew by the previous scans, almost immediately, that we were NOT dealing with a bowel obstruction but something else. By Tuesday my baby seemed to be slipping farther and farther away. He had a swallow study done Tuesday morning which he failed on three different levels; he then was not longer able to take food orally. There was an MRI with contrast scheduled for later that day, but as the day went on his breathing became VERY sporadic and he didn’t keep his eyes open for longer than 5 seconds. Around 7 when our nurses were changing shift I began to question what we were waiting for, both nurses who had been with us since we had moved up to their floor also noticed the decline and told me I could call cart, which simply means get a second opinion. By this time I was in tears he was getting worse and worse so I called it.

The Pediatric Intensive Care team came up where they began to evaluate him.
Just as they were deciding to put him on oxygen our nurse’s phone rang, it was radiology and just by the look on her face I knew it wasn’t good. The PICU team began the process of moving him down to their floor when a doctor came in out of know where and told me the answer to the question I had been longing for. Our son had a very large mass in his head. My first question was if it was operable. This gentleman thought it was and called Dr. Ackerman who was on her way within minutes.

After a 7 hour surgery that started in the late hours of May 11^th and ended around 6 am on the 12^th we were told they removed a 6 cm tumor from our 8 month olds brain that she believed to be malignant. The weeks following, we got our official diagnosis of Medulloblastoma and possible treatment options with radiations not being one of the “great” ones. After the tumor resection they took out the current shunt because they didn’t want to drain free roaming cancer cells into the abdomen. He then went into surgery to have a central line placed, a G-Tube placed at which point they scoped out his belly for ulcers because he had bloody stools, and they removed his extra digits. So here we are almost a month later starting VERY intense chemo.

This type of tumor is rare in babies under 3 and even rarer in babies under 1. We have a great team of doctors and nurse and I know in my heart we are in the right place. We have 6 long months of chemo ahead and then he will have a stem cell transplant to boost his blood count and immune system back up to normal. So far so good, he seems to be handling like a champ!

Here are the details:
Many incredible companies and people have offered up some of their products or credits to their stores for this giveaway. To enter please consider a donation to Keegan Chupp’s family**. You can donate by clicking the Paypal Donate button below. Each $5 donated will count as an entry to win one of the awesome donated prizes. If you donate $20 you will be entered four separate times.
My friend over at Raising Madison will be entering each donation into a spreadsheet and will draw on June 29^th via www.random.org. All of the winners will be announced on June 30^th.

**There is no fee or charge to participate in this giveaway. Participation is free. You are under no obligation to make a contribution and you may not be barred from participation if you choose not to make a contribution. Simply leave a comment at Raising Madison's Karing for Keegan post with your name and email address to be entered to win.

Sponsors

ERGObaby – ERGOBaby Carrier ($105 value, US & Canada)

BrightStarts – Bouncer Chair (US)

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