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Josiah – Cincinnati Reds 2016 R2VTour Warrior

Robinette Family
10 May 2016
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July 25, 2016
Hello everyone,
It’s been awhile since I’ve updated you all on Josiah…so here goes.
Since last update a lot has been going on, mostly good for a change.  I’ll start with that…
On June 7th our family got to experience a little bit of “normalcy” thanks to a wonderful non-profit group called the Angels of Warriors.  They treated our family to a night out at a Red’s Game as part of their “Road to Victory” tour.  We rode to the game in a limosine, got to go on the field during batting practice, had great seats, all the food we wanted, and they even bought the boys some souvineers, including the boys’ favorite, giant foam fingers.  It was a wonderful night out and believe it or not, the Reds even won. Thanks Brad and Dustin, our Angels of Warriors hosts.
On June 18th we celebrated the end of chemo with Josiah’s No Mo’ Chemo Party.  Over 75 people came out to celebrate with us, enjoying cake and snacks and fellowship.  Thanks to all who made this a great day for our family and especially for Josiah.
We have been trying to think outside of the box to get Josiah moving and back outside, so at the end of June we bought Josiah a recumbent bicycle.  If you don’t know what that is, it’s a bike that sits low to the ground and has three wheels, two beside where he sits and a third in the way back.  Josiah can get in and out of it on his own and doesn’t have to worry about trying to balance it. He can now join us on family bike rides around the neighborhood!!!!
On July 4th our family participated in the Pray, Hope, Believe 5k Run/Walk to raise money for brain cancer research.  We got to meet Tony Merk’s parents, the young man whom the foundation was named after, who lost his battle with brain cancer.  We also saw and spent time talking with the Meinhardts, Sophie’s parents,(they are such wonderful people) and we are looking forward to again participating in the Sophie’s Angel Run this fall.  Mark your calendars for September 25th and plan on joining us again this year.
As far as Josiah’s cancer, we got some good news there as well.  Josiah had a follow up MRI on July 12th that again showed no sign of the tumor returning!!!!  Josiah has been cleared to have his eye surgery and is going to have his port removed.  Also, Josiah, with the help of an appetite stimulant, has begun eating again…quite well in fact, and has gained over 20 pounds in the last month or so.  We were given the go ahead to wean him off his g-tube feeds and he now is totally off the night feeds.  I can finally sleep through the night again without getting up every 4 hours to fill his feeds!!!  Josiah only needs the g-tube for his medicines now and we will be working on that so we can hopefully (in a few months) get it removed as well.  We are headed in the right direction!!
We are very excited about all the good news, but we still have a long way to go…
Josiah’s port removal has been scheduled for August 15th and his eye surgery on September 28th.  Both of these surgeries require general anesthesia.  Josiah still has 4 hours of therapy every week, two on Wednesdays and two on Fridays.  He still is struggling to learn how to walk again and still struggles with speech and fine motor skills.
Josiah is going to be hopefully going back to school, at least part time this fall, but we are uncertain how that is going to work, with my work schedule and his therapies.   We have a meeting with the school on August 18th, the second day of school, to figure out a plan, so Josiah won’t be starting with the rest of his class.  This was the earliest time we could meet, as we have to wait until the teachers, counselors, etc. to come back to work.
As far as prayer requests/needs…
Our family…we are still struggling with our new family dynamic and the boys can’t seem to get along right now.  I know, I know, all brothers go through this, but with all the other stresses in out lives we really don’t need this too.  Please pray the boys can find new ways to interact/play together and find a way to be in the same room together without fighting.
Bryson…Bryson will be starting Middle School this fall and I am concerned about this transition in his life.  He has had so many different things to deal with this past year and now a new school on top of everything else.  Please pray his transition to Middle School goes well and that he does well with his new teachers.
Josiah…Josiah still doesn’t have the self-motivation he needs for his therapies.  He would rather watch TV or play his tablet than work on practicing walking or talking, etc. (typical teenager).  Please pray that he sees the need to work hard in his therapies, both at Drake and at home so he can continue to improve and hopefully one day be able to walk without his walker or cane.
Dave…As always, please pray as Dave juggles work and home life.  It’s hard concentrating on everything when we have so much going on.
and finally Sherriann (me)…although I have been very thankful for all the good news that has been going on in our lives, I am also just a bit discouraged with some of the issues we are still dealing with.  July 11th was the one year anniversary of the diagnosis of Josiah’s tumor and July 15th the one year anniversary of his 15 1/2 hour surgery to remove the tumor.  A year later he is still not walking without assistance, still struggling with fine motor skills, still struggling to see, still struggling to talk.  I am struggling with watching him stuggle and although I am now getting more sleep, I am still exhausted.  Please pray that I dwell on the good, not the bad and give me the strength to keep on keeping on…
Thank you for all that you have done and continue to do.
Sherriann Robinette

 

March, 2015

Josiah had been a little “out of sorts” through the beginning of last summer, a bit more lazy than usual, having trouble seeing (needing his glasses changed?) and having a few headaches…all of which was attributed to being a teenager. On July 11th he was playing cards, laughing and having a good time with family, when half of Josiah’s face wasn’t responding when he was smiling (facial sagging). He was taken immediately down to Cincinnati Children’s Hospital and after a CT Scan his parents were informed that Josiah had a golf ball sized tumor in the back of his brain, near the brain stem. The tumor turned out to be cancerous. Josiah had surgery that evening to put in an external shunt to relieve the fluid buildup in his brain and four days later, on July 15 th he had 15 ½ hours of surgery to remove the tumor. Thankfully the doctors were able to remove the entire tumor, but not without some issues. Because of where the tumor was located (near the brain stem) Josiah developed what is called posterior fossa syndrome. He has no brain damage, but the connections between the brain and body are “missing” or slow processing. Josiah is struggling with a lot of issues right now. He has had to relearn a lot of things. Josiah can now walk with the aid of a walker and his speech is coming back, but he talks slowly and with some enunciation issues. His fine motor skills were affected so he has trouble doing things with his hands, and his eyes were damaged as well. He has tracking problems (crossed eyed) and his vision is poor, even with his glasses. Add that to the cancer and a slower processing of everything and Josiah has a rough road ahead of him. Josiah spent 2 months and 11 days in the Hospital undergoing 6 surgical procedures (including the 2 mentioned above). He and his parents were the “nomads” of the Hospital, being shuffled back and forth to 9 different rooms on the Neurology, Oncology and Rehab floors. Josiah got out of the Hospital on September 22nd but still has a way to go. The type of tumor Josiah had (Choroid Plexus Carcinoma) is a very rare brain tumor that usually affects children under four years old. Due to Josiah’s age (13) and rarity of the tumor, the doctors are unsure of exactly how to treat him. After leaving the Hospital, Josiah underwent 30 days of outpatient radiation, 5 days a week for six weeks. He is also currently undergoing chemotherapy. He had two cycles of chemo before we left the hospital and two since radiation ended. Josiah has 4 to 6 more cycles of chemo left to go. (A cycle is 3 days in-patient getting the chemo, then 18 days at home). He also has weekly OT, PT and Speech therapy visits not to mention many different doctor and clinic appointments.

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