Karing for Keegan

Posted on | June 8, 2010 | 4 Comments

My hero, Joanna, over at Raising Madison, has taken it upon herself to help out a family in need. I know times are hard for all of us these days, but when I look at my son? I see a healthy baby. Not every parent can say that. Beth Chupp would give anything to say that, I’m sure. Read her story here and then stop by Raising Madison to donate and to see all the wonderful donors who are contributing to this marvelous giveaway. You don’t have to give money to enter, but come on… who doesn’t have $5 to spare?

Keegan Thomas Chupp was born September 23rd, 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 6th, 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 9th 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 8th 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 14th. 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 15th, 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 11th and ended around 6 am on the 12th 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 on Raising Madison. 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.

Want to know who is sponsoring this? Check out Raising Madison for a list of all the lovely sponsors.

Joanna will be entering each donation into a spreadsheet and will draw on June 29th via www.random.org. All of the winners will be announced on June 30th.
**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 on http://www.raisingmadison.com/ with your name and email address to be entered to win.

Please help spread the word in any way you can. Tweeting will not earn you any extra entries but if you want to let people know about the fundraiser, please use the hashtag #karing4keegan.

If you are a company or individual interested in adding your product to the prize list you can contact Joanna at raisingmadison925@gmail.com

Let’s help Team Keegan kick cancer’s butt!


4 Responses to “Karing for Keegan”

  1. Beth
    June 8th, 2010 @ 8:27 pm

    Thanks for putting our story and Joanna's wonderful giveaway out there! We really appreciate it, life is hard right now, that I can't deny!

  2. Raising Madison
    June 9th, 2010 @ 1:23 am

    Your hero?? Gahh, get outta here. You know how it goes, I'm just a mom who is grateful for the health of her own kid and wanting to help a mom who doesn't get to sleep at night with those same comforts.

    I adore you 🙂

  3. Melodramamma
    June 9th, 2010 @ 2:33 am

    Thanks for letting me know about this. Way to go Raising Madison and Law Momma. My heart goes out to Beth and her family. Will keep you in my prayers beth and see what I can do.

  4. KLZ
    June 9th, 2010 @ 8:14 pm

    God, this just breaks me heart. I cannot imagine.

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