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Jack’s Story

To join Jack & his family in the fight against pediatric brain cancer please go to:

WWW.TEAMJACKFOUNDATION.ORG

On April 22, 2011, Jack was life flighted to Children’s Hospital Omaha after suffering a life threatening seizure. An MRI showed a lesion in the left temporal lobe. Doctors feared HSV Encephalitis, a life threatening brain virus. A rigorous 21-day treatment followed. Later testing revealed our worst fear--a brain tumor.

On May 20, 2011, a tumor resection surgery was attempted.  Only a small amount of the tumor was removed.  The remaining tumor was declared inoperable.  Pathology revealed a cancerous glioma. During this time, Jack battled the onset of Secondary Epilepsy--a condition caused by the tumor.  After April 22, Jack suffered frequent partial seizures, sometimes upto 10 a day. The seizures persisted despite high dosages of two anti-seizure medications.

Specialists at Children's Hospital Boston were consulted in August 2011. Pediatric Neurosurgeon Liliana Goumnerova indicated that she felt she could likely safely resect the tumor, and at the same time achieve seizure relief by using intraoperative electrocorticography.  Jack's 2nd brain surgery in 5 months occurred at Boston on October 10th.  The second surgery went great.  After surgery, Dr. Goumnerova came out of the operating room smiling.  Dr. Goumnerova removed a golf ball sized tumor.  Nearly all of the tumor was removed, with the possible exception of a small amount of residual near the brain stem.  Thankfully, since the second surgery, Jack has not suffered a single seizure and is doing great clinically.  

In January, Jack traveled to Boston for his first follow-up MRI.  On January 11, 2012, the MRI looked great as the "spot" showed no sign of growth.  Jack's neurologist then aggressively began tapering Keppra.  By March 22, 2012, Jack was down to one anti-seizure medicine.

A 6-month post operation MRI on April 18, 2012 in Boston surprisingly revealed a progression of the "spot." The "spot" is inoperable.  Doctors have now decided that chemotherapy was the next best therapy. Accordingly, Jack had a port surgery on April 26, 2012 and began 60 weeks of chemotherapy on April 27, 2012, at CH Omaha.  His chemotherapy will continue until approximately July 2013.

Jack and his family have received incredible support.  Jack has a very loving family and community.  Nebraska's Rex Burkhead has also helped make people aware of Jack's fight by so graciously wearing a "Team Jack - Pray" wristband during the 2011 and 2012 football seasons. We thank God for his involvement in Jack's life, as well as the thousands of supporters across the country.  God is good.

Jack and his family gives thanks and praise to Jesus for all of Jack's prayer warriors, supporters, and followers.  God Bless you all for your touching and overwhelming support.  

Love,

Andy, Bri, Jack, Ava & Reese

Latest Journal Update

Medical Update

A little over one month ago Jack was enrolled in a clinical trial to battle his brain tumor. The initial days were difficult, as Bri and Jack spent the first eight days in Boston alone, while dad and the girls fended for themselves at home.  Jack's first day of treatment with the new drug was on August 22nd. Since that time, he has been taking the oral medication twice daily.  

The medication has been well-received by Jack. So far the side effects have been quite minimal and he has been able to enjoy all of the things that a little boy should enjoy. The side effects are more permanent and potentially serious, than the usual side effects of chemotherapy like puking or loss of appetite.  So far Jack has not been nauseous and his appetite is commensurate with his last name.  He is approaching 100 pounds, as a 9-year old, and we couldn't be more thankful. He loves jumping on the scale and is hoping to see triple digits soon. Because the clinical trial med is targeted gene therapy, Jack has been able to avoid the standard chemo woes.

With this treatment, Jack is required to receive testing at the trial site on days: 1, 8, 15, 22, and then once a month for a year.  We are so thankful to be through the initial onslaught of testing.  We are now in the "once a month" for a year testing mode.  Jack and mom and came back from Boston on Monday, after having been tested earlier that day (September 22nd).  Jack's next visit monthly visit to Boston isn't until October 20th.  Typical testing includes an echocardiogram of his heart, an EKG, and bloodwork to monitor his kidney and liver functions.  Beginning in October, testing will now include an MRI every-other-month.  Thus, the upcoming visit will include some fairly serious scanxiety.  Regardless, we are optimistic about this upcoming scan, as Jack continues to be completely asymptomatic of any tumor progression (i.e., headaches, seizures, etc.).  We choose to think only positive thoughts.  Obviously a good MRI is in our constant prayers.

Having given the above update, it is with some hesitation that we provide the latest medical finding. Because this clinical trial requires serial monitoring of Jack's heart, he has had two echocardiograms since August 22nd. A few weeks ago we were informed that Jack now has a blood clot in a vein in his heart. We have now welcomed a hematologist and a cardiologist to Jack's medical team. Jack's pediatric neuro-oncologist, in consulting with the new team members, is 99% sure that the clot is the result of Jack having had a chemo port for nearly 18 months. Apparently, cancer children who are required to have a port installed, frequently develop blood clots associated with these ports. The blood clot is a non-occlusive clot, and is not creating any symptoms for Jack.  The obvious concern is the clot moving and it creating a pulmonary embolism.  Another concern is the remote possibility of a stroke. The good news, however, is that between the two echo's, the clot did seem to be shrinking a bit. For now, we are on a watch and wait basis with the clot. The doctors are concerned, but seem confident that Jack will move past this issue in time. Obviously this has been added to our prayer list at home.  

There is a positive behind every new medical challenge. The recent relapse, in combination with the news of the blood clot, has refocused our family on what truly is the most important, which is each other.  While Jack has pokes and medical issues that he is facing, we continue to count our blessings. This September, between the Husker Pediatric Brain Cancer Awareness Game, the Team Jack Radiothon, and the Omaha Marathon, we spent a lot of time with families who lost their child to pediatric brain cancer. Our heart breaks when we visit with these families.  They are the true warriors.  We get to still walk through the mud together as a family, and we thank God for that everyday.

We are so thankful that Bri was able to take care of Jack while in Boston.  This allowed Andy to continue practicing law. He continues to remain very busy and he is so thankful and appreciative for those clients who have stuck with him over the past 3+ years. Jack celebrated No. 9 on Friday and Ava celebrated No. 7 on September 17th. We are so thankful for these September blessings.  

We continue to spend our "free time" pushing for pediatric brain cancer research and awareness through our work with the Team Jack Foundation.  If you get a chance, please wander over to our new website at:  www.TeamJackFoundation.Org.  

Thank you for your continuous love, support and prayers.  Your prayers sustain us each and every day.  Take care and God Bless.

Love,

Andy, Bri, Jack, Ava & Reese
























 
 
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Comments

30 Comments

Kirsten Anderson
By Kirsten Anderson, Camden and Sawyer
Jack is such a strong boy and truly an inspiration to me and my family! We continue to pray for Jack and your entire family! Thank you for the update! I look forward to great news after his next MRI and EKG. Your posts always remind me to enjoy every day! Go Jack! All our love! God Bless!
John Lorenz
By Sherry
Thank you so much for keeping everyone up to date about Jack. He is such a little fighter and is my hero ! Please know that you are all in my prayers. God Bless you and your family.
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1 person hearted this
Sandi Maughan
By Sandi Maughan
In Jesus name blood clots leave Jack don't return so be it Amen.
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1 person hearted this
Kim Lynam
By Lynam Family
Thank you so much for the updates!! Your family is in our prayers!!!
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1 person hearted this
Margret Thorpe-Schultz
By
The people of Nebraska and beyond support your family and @TeamJackFoundation. Keeping all in our prayers.
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1 person hearted this
val thomas
By Val
My prayers are on the way for Jack and His family. Thanks for the update
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1 person hearted this
Rebecka Schafer
By Rebecka Schafer
My prayers are with Jack and the rest of your beautiful family! Thank you for the update.
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1 person hearted this
Janet Butterfield
By Janet Butterfield
thank you for the update and our prayers will continue, never fear!
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1 person hearted this
Jackie Lueders
By Jackie Lueders
Jack you are in my thoughts and daily prayers. God Bless your family and thank you for the updates. You are a true warrior Jack.
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lana hoover
By Lana Hoover
continue to pray for Jack and your family. Thanks for keeping everyone informed.
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1 person hearted this