A Courageous Little Boy "Grant The Great"

[Tina, Clover, Plus 5 More]

Update:   Grant the Great's battle ended 4/11/13.  Grant was a very couragous little boy.  Lexi wants everyone to know he is running around and playing ball with all the Doodle's. 

 

Grant is 7 years old and he was diagnosed with a brain tumor known as ATRT.  Grant has indured more in the last five and a half years than anyone should in a lifetime.

Grant’s tumor was found when he was only 16 months old. He woke in the morning and could no longer grip with his left hand and was limping on the left side. He did not complain or fuss but Beth knew something was wrong. After a long day at the hospital, the doctor told Beth and Scott that Grant had a large mass in and along his right ventricle. Grant had surgery in Iowa City to remove the entire original tumor, with clear margins. Grant was then diagnosis with ATRT (atypical teretoid rhabdoid tumor). It's rare, extremely aggressive, malignant brain tumor. Grant was given less then a 10% chance for long term survival. 

As any parent would, they decided to fight.  All the research told them Grant would need radiation and a very aggressive treatment if there was a chance to beat the cancer.  St. Jude's in Memphis was where Grant needed to be.  Over the next 13 months Grant under went 20 weeks of chemo, 18 intrathecial Mafosfamide treatments and 6 weeks of conformal radiation.  During chemo treatments another tumor was found.  After radiation Grant had Gamma Knife Radiation where the second lesion was located in the Pineal area of his brain. Another round of chemo that was stronger than the first and then maintenance chemo.  During the 11th month a new area showed up in one of the scans.  The doctors continued treatment and monitoring the new spot.  Treatment was completely finished and the new spot had not developed into a problem.  During this time Beth and Grant were in Memphis.  Scott was in Iowa with Grant's two older brothers, working full-time, farming. He used all vacation/sick days to travel back and forth to Memphis.  Grant's grandparents took care of his brothers when they were not in Memphis during school breaks. 

So after 13 months in Memphis they came back home to Iowa and Grant started pre-school.  Over the next four years Grant has been doing great and living the life of a little boy.  Going to school, playing sports, making friends and became a big brother.  Somewhere along the way he got the nickname Grant The Great.

In February a new mass in the right thalamus showed up on scans, biopsy was done and the pathology was inconclusive but tends to lean towards ATRT.  Scans in March showed slight growth in the tumor. They had hoped to radiate this new tumor but after many opinions it was decided that it would not be in Grant's best interest to radiate the area again. Grant started chemotherapy again April 22nd. He is receiving Topotecan and Cyclophasfamide along with oral Vorinistat (SAHA). Grant will have two rounds of chemo and the doctors will rescan the area.

I started out writing a short blog on how this smart, special, wonderful boy has enriched the life of Lexi and our family.  Over the last four years Lexi and Grant have become good friends, as I have with Beth.  They are in the same grade, ride the same bus and even had a birthday party together.  Lexi even pushed another boy down once for teasing Grant.  This year Grant had a different first grade teacher and yesterday the class list for second grade came out.  Lexi comes running in the house from the bus, "Mom, Mom, guess what, Grant, Nick and Eliase are in my class next year.  Isn't that Awesome!".  It took all I had to push back the tears just to tell her That's great news you guys will have so much fun next year".  Since Grant started chemo this time he hasn't been doing very good.  He hasn't eaten solid food in two weeks, his siblings and grandparents headed to Memphis on Monday.  Right now the outcome doesn't look to good.  The kids know Grant is sick, but he's always come back home after his treatment.  So we are praying that Grant the Great gets another miracle!!

 

Update on Grant

Last Thursday, Grant's ANC was under 100, Saturday it was up to 800 which decreases his risk of infection.  Grant had been on contact isolation unable to leave his room.  Sunday he was able to leave the hospital and return to Habitat for Hope homeaway housing.  Grant still has a long road ahead of him, but at least he's surrounded by his loving family.  Beth had the best Mother's Day and movie night to boot.  Thanks for keeping Grant in your thoughts and Prayers.  The power of prayer is amazing.

[Linda and Murphy]

St. Jude's is a wonderful place and we will pray that they can find one more miracle for Grant the Great.

Lexi sounds incredible. The photo of her dancing with Clover is wonderful.

[Nicky, Riley & Boris]

I'm praying too, as the recipient of a miracle myself I do know they can happen but this little boy has been through such a lot.  Lexi sounds like a terrific daughter and all I can say is let's hope and pray for Grant the Great.

[Allyson, Peri & Taquito]

I will say some prayers.  You never know what can happen.  Your daughter sounds amazing, a true testiment to you.

[Leslie and Halas]

I have some friends that run in the St. Jude Memphis to Peoria run (we live near Peoria, IL).  They don't do the whole thing, but there are several local groups that run a section from their town into Peoria for the finish.  So it's maybe only 20 or 30 miles for their group, but an individual may run 7 or 10 miles or more that day, when they're used to running 3 or 4 at the most.  They just get so caught up in the event, that they want to keep going.  The finish is amazing.  All these groups of runners meeting up to cross the finish line.  They said it's such a wonderful thing to be a part of.  St. Jude does great work, and I think they get a lot of money from the St. Jude run.  I meant this reply to be more about St. Jude, not necessarily the run.  But since that ship has sailed, I may as well tell everyone to contribute to a St. Jude runner if you know any.  It's a great cause!

 

Grant sounds like an amazing kid.  I'll be praying for a miracle.  But no matter what happens, your daughter has a great friend, and she'll remember him forever.

 

 

[Jennifer,Chloe & Myla]

What a sad story, we will pray for Grant's miracle! No little one should have to go through all that, but he's pushed through so long. You will all be in my thoughts and prayers.

[Pat and Traveler]

Heart breaking story.  My heart and prayers go out to this courageous little boy, and kudos to your daughter!

[Jane, Guinness and Murphy]

What incredible courage this boy must have.  This story is so heartbreaking.  I had to stop watching the St. Jude specials on TV, because I would sit there and sob.  St. Jude's Hospital is one charity that is so deserving our support...they do help to create miracles.  I will keep Grant in my prayers.  You must be so proud of Lexi....the more I hear about your daughter the more convinced I am of how special she is.