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Make Sure Avery Is Not Alone This Holiday Season

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Avery’s Story

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http://jacobdmoore.com/gallagher/

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Team brAvery's Story

Avery Gallagher five years old!

Sunday Mother's day 2007 Avery had a stiff neck. We took her to the ER they told us it was probably just a stiff neck. Monday she woke up and vomited. Tuesday still sick. Took Avery to doctors office in Hudson. They ran blood test. Her eyes looked a little cross. Wednesday, still sick vomited just wanted to lay in bed. Took her to Children's in St. Paul. They gave her IV fluids and did an xray of her neck. Eyes still looked crossed even worse. After 6 hours we went home. Thursday Mom laid in bed with Avery all day. She knew something was wrong. Friday went to normal pediatrician. He took one look at her and ordered an MRI stat. He stayed with us for the scan and showed us after that Avery had a golf ball size tumor in her cerebellum. We rushed Avery back to Children's in St. Paul. Friday May 18th is the day our lives forever changed. Our beautiful bright daughter had a brain tumor.

Monday May 21, 2007 Avery had brain surgery to remove the tumor. Pathology report said Anaplastic Medulloblastoma, a highly malignant cancerous tumor. While in surgery the surgeon reported Avery also had Leptomeinigeal Disease (a coating of cancer on her brain) something that is rarely found at diagnosis. The MRI's also found tumors on Avery's spine and another part of her brain. This too is rarely seen at diagnosis. Avery clearly has been given an extremely difficult cancer to fight. Please Pray for our beautiful little Girl.

To date this is what treatment Avery has had.

Port Placement Surgery-

Six weeks of radiation- Full brain and spine. Had to be put under for each treatment. (5400)

Six weeks of daily Carboplatin and weekly Vincristine as a desensitizer during radiation.

Went to Mayo Clinic for second opinion

Merherker line placement

Stem Cell harvesting- got 9 million

Induction Chemo- Zero counts for four weeks.

Port removal because of fungal infection

Merherker line placement but did not harvest.

Hickman line placement and G-Tube placement for feedings.

Two high dose chemo rounds with stem cell rescue suffered from colitis each time.

January 2008 Avery is in remission! Thank You God! We Praise you!

Memorial Sloan Kettering Cancer Center in NY for experimental 3F8 Antibody injections. To fight the leptomenigeal disease and kill any small undetectable cancer cells.

Ommaya surgery - Port in brain for injections

Flow study's and scans to see if Ommaya functions properly.

March 12 2008 Avery's Birthday. Test dose of 3F8.

Had four full does of 3F8. Every other week. 6 week stay in NY.

Starts Metronomic Chemo plan.

October Clear scans! Thank you God!

November 2008- Stroke like symptoms. Loss of vision, right side weakness etc. MRI, MRA, CT angiogram, and angiogram show narrowing of Avery's middle cerebral arteries. 30% and 60%. Her brain is getting deprived of proper blood flow. This damage is from radiation. It is not common so soon after treatment usually several years later. Started aspirin. Looking into options.

November - Hyperbaric Oxygen started. This is to help damaged vessels and arteries in Avery's brain. Her vision and functioning is better. Oxygen is helping. Praise God!

December- Make A Wish trip. Avery had a blast on her MAW trip to Hawaii and swimming with dolphins. Thank you Make A Wish!

December 2008- Oxygen is still helping. Perfusion scan done. Still notable difference in flow. However, most damage from stroke/episode looks healed. Started Metronomic cycle 3.

Clear Scan January 19th. Will finish up Oxygen at the end of the month. Total of 8 weeks.

January 28th had another TIA caught early rushed to ER lots of verbal disturbances and tingles in right arm again. Only one night in hospital. Did blood study changed to Plavix. The aspirin was not helping.

February-Working with Dr. Scott from Boston Children's a Neurosurgeon who specializes in MoyaMoya. He said Avery is very unique and he has not seen a child with radiation stenosis so early on. Watch and wait for now. Also did LP and a draw from Ommaya Spinal fluid was clear no active cells.

Latest Journal Update

What a day!

Praise God Avery's scan was fine. NED! No Evidence of Disease. No brain bleed and her arteries have not changed. Breath!!


Here is what's up.


Avery woke up again this morning around 6:00am with a worsening headache and then vomited. Yikes!!


She was scheduled for her annual MRI on Wednesday. With Avery's history of MoyaMoya and stroke this worsening headache did not sit well with me. Tom and I agreed she should be seen right away. We called the on-call physician at the oncology clinic and they agreed with us. In the brain tumor world headache and am vomiting is not your friend.


Arriving at the Children's ED in Minneapolis was creepy. No disrespect to the hospital. We love Children's. I think we suffer from Post Traumatic Stress. Avery, Tom and I. None of this gets easier over time. I certainly do not want to be talked to or touched when I have a headache just leave me alone in a dark room.


Needless to say Avery needed a lot of help to get the IV in and through a brain MRI. God Bless that child and our wonderful medical team at Children's. Dr Bendel and Melissa are awesome. I'm in awe of them! Not quite sure how they put up with me? :)


Thank God the scan revealed Gods healing touch and she remains NED. So we need to figure out why she is having these headaches and how to manage her pain.


Please continue to keep Avery in your thoughts and prayers. I'll update in a few days. Also, please keep Lily in your prayers too. Lily will have a tonsillectomy on Monday and she is very scared.


Thank you CB friends and family for your continued support and prayers!


Love Team brAvery!
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Comments

11 Comments

Dena Hall Keep F.R.O.G.in'(Fully Relying On God)
By Dena Hall Keep F.R.O.G.in'(Fully Relying On God) — last edited
Hey there Little Bug! Just got back from vacation at the Wisconsin Dells with the fam, all 17 of us (four babies, what a trip, I’m a grandma! I posted an entry from our “condo” or so I thought. Anyhew, I rode some awesome roller coasters and water slides. One was totally dark! We took a duck tour where they show you stuff and are really funny. You ride in one of those land lake boat vehicles. We had dinner on a "sunset cruise" on the lake and I tasted lobster for the first time. I thought it would be gross, but it was DELICIOUS. Then tried some Cajun food and had frog legs. It was funny eating the crawdads cuz they were looking back at me. But I am a real wimp when it comes to spicy food. My mouth and lips burned for quite a while. :O) Also got to see a really good water show by a guy named Tommy Bartlett. Water skiing tricks and a VERY funny comedian. He had the place rolling and he didn't even cuss once! But the most awesome thing we did was The Bigfoot Zip-line tour! 6 lines with height being 462′ – 1397′. It was amazing to float down and see all of God’s creation. Some of them got daring and went upside down! I passed on that one! :O) Not to complain, but it wasn’t so amazing that I had to walk up 547 steps to get to alI of them. If you have n ever been there, I highly recommend it. ok, gotta go get everything unpacked and do all the “fun” stuff that has to be done after vacation. LOTS of love and hugs from a perfect jeans and tank top Iowa. Give everyone else my love. Dear Heavenly Father, thank you so much yet again for blessing my life with this family and especially answering our prayers on my Little Bug’s health. Please let the healing continue and all go well for the rest of the family. In Jesus’ name, Amen
C.O.L.E. (caring openly,loving eternally) Prayer Team
www.colesfoundation.com
Dena Hall <>< http://www.shineministry.net
Kay Kole Leary
By Kay Kole Leary
So glad to hear "NED"!
Hope it all turns out to be something simple and easy to remedy.
Shelly Weyers
By Shelly Weyers
Praising our God for NED for Avery!! Praying for Lily & her tonsillectomy on Monday!
Sarah Gouzoules
By Sarah Gouzoules
Yeah!! NED. Will continue praying for both girls. Sarah C.O.L.E'S Prayer Team www.colesfoundation.org
Sue Varriano
By Sue Varriano
Prayers for Avery and Lily. I just hope these headaches will go away and we can see her happy and healthy.
James Wicker
By Uncle Jim Wicker
Diane, thank you for the update. You and your family are in my prayers.
Linda Beimers
By Linda Beimers — last edited
Praise God for the great news on Avery, I'll keep all of you in my prayers -- still hoping it could be some type of allergy problem. And I'll sure remember your precious Lily too, and also you the parents (that's sometimes the hardest part of it all). With love and prayers from a gramma in Iows
Linda Kemper
By Linda Kemper
Great news for our hero Avery and family !!! We pray you figure out the reason for the headaches!!! God Bless !!!
donna bolles
By donna bolles
Hi Diane,
I am so happy to hear that Avery is still NED> I praise God for this. I will keep all of you in prayer. I understand about the PTSD. After coming home from St. Jude and RMH I have symptoms. Please keep our little Avery in your prayers. I do not know if you are aware or not but, she recently was diagnosed with recurrence. She is now on a chemo regimen of 4 chemo drugs. God bless all of you, Donna Bolles > Madelyn and Avery's Very Proud Nana. Always Trusting, Believing, and Staying Forever Faithful to God. With HOPE for a cure for all childhood cancer. P.S. Lily is in my prayers too for her tonsillectomy to go smoothly.
caringbridge.org/ visit/averyevans
Kris Dillenbeck
By Kris Dillenbeck
Hi From Pennsylvania,
Praising God for the Good Report!!!!!
Thoughts and Prayers are with you and praying that Avery's headache problem will be resolved and will also be praying for Lily and her tonsillectomy.