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Isla’s Journey

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Tulsa, OK
Isla’s Journey

09/28/2023

A share will help. Big thank you to everyone involved.

08/21/2023

Please help get the word out. This is the vehicle that gets us back and forth to Texas for her treatment and appointments. I swear everytime things start looking up, almost a year to date they got us again. Yall put the word out and keep a eye open. The yellow kia is stolen again. Attached are pics of the car.

07/22/2023

Its been a while since giving yall a update on Isla. So a recap of the past few months is a little over due.
She is still doing her IVIG treatment monthly in Ft Worth She went from taking prednisolone (daily steriod) along with 7 other medications from January to May. Masking her symptoms with them still showing through here and there. So the doctors decided to switch her from prednisolone to dexmethasone,
which is a steriod she would take orally 4 times a day for 4 days consecutive and be off of them for the rest of the month.
Also allowing her to come off of most of her other medications. They tried that for 2 months and have noticed towards the end of the 2 months it was not masking as well as before.
They have now started her on a weekly medicine called rituximab that will be administered once a week through IV for atleast the next month meaning we will be in Texas half of this next month..
Today is her first day on her new treatment and I hate to say it, but its not doing as good as we have gotten to see her these past few months.
She woke up showing signs of regression, shaky and off balance and extremely irritable. Some mornings that happens but after a hour or so of being awake it usually straightens its self out. Today, that does not seem to be the case. Some days are harder than others but going 11 months and still not knowing what is going on with our daughter and still not a steady treatment plan...
It is becoming more emotionally and financially draining as a parent than I care to admit. But we are staying strong and trying to find the resources to be able to continue her treatment in hopes to get this figured out. If you have a healthy kid, hug them tight and be thankful. Bc these are things I wouldn't wish on any parent.

02/14/2023

So, we made it to Ft Worth Cook's Children's Hospital and they are going to be admitting Isla to do more observation and try another run on her IVIG and another run on steroids. They will also be pulling more labs to check for certain signs that show, to more thoroughly check for neuroblastoma. As of right now they are saying 3-4 days atleast until they can get a better look at her.

02/06/2023

Got an update for everyone. On the 14th of this month we will be heading to ft worth to see what their neuro department can figure out. We aren't sure at this time how long we will be there or any of that yet. Its a normal outpatient appointment, but they said she could be admitted the same as she was from her tulsa neuro to st Francis childrens.

01/11/2023

UPDATE: Over the past few days Isla has been pretty lethargic with a loss of appetite. Moody and tired as well as increased vomiting.. all things that are pretty out of character for her.
She also has fully regressed to the point of the tremors and ataxia are back to affecting her eyes and focus and needless to say all her basic motor skills as well.
We have tried and tried to middle man everything between the doctors, specialists, insurance and the hospital at Ft Worth. Everyone has said they have done all the paper work to get things in motion, even sat in her P*P office as they called Cooks and listen to Cooks say that everything was good and that they would contact us within the next business week. Just to hear nothing and when we call be told the same thing and still make no progress..on a separate occasion 2 weeks later
Was put on hold while Cooks contacted her P*P to talk yet again. And to be told again that we will hear something back within the next business week. The hold up has supposedly been what we keep being told is the "Insurance Authorization Referral" before they can move forward with her neurology appointment at Cook's. Even though they have approved her a genetics appointment. And the soonest they can do that is in mid April...So today we spoke to the Shriners Children's and they have someone from there Shreveport hospital reaching out to us in the next 48 hours to discuss making an appointment out that way and to see what ways they can help. So at this point we are going to do what we can instead of waiting on the system while they do their thing and hopefully get the ball rolling towards some answeres before they decide to get her an appointment set...this has been a long 4 months.

01/02/2023

Hey guys, just wanted to give an update. Isla has now been put on some sleep medication bc the ataxia and tremors have been affecting her sleep. Shes back to stumbling and not being able to walk. Her appetite has been going down hill some days, others she acts like she can't get fed enough. Still random vomiting..which didn't start until she started steroids. The only thing that has helped has been the steroids they had her on in the hospital but can not keep giving them to her at risk of her liver. So we are back to square one and with the only appointment being approved is genetics in ft worth..we have been told by her p*p and neuro here in Tulsa that they have done what they can and that we are just waiting on Ft Worth to get back with us...we are supposed to hear more from them this week. Its been rough watching her regress after getting a few weeks of her being her normal self. On top of having to be the middle man for the Dr's, hospitals and insurance to get any real traction. But we won't stop til things get figured out..thanks for your time just wanted to give yall an update.

12/20/2022

We would like to give a huge thank you to Real Okie Superheroes - ROS for reaching out and offering help as well as using there voice to bring awareness to Isla's Journey in this article. We appreciate yall so much.

12/09/2022

Ryleigh has been let go from her job while taking absence to be in the hospital and care for Isla. Right before the holidays, being sent out of state and the most difficult time of our life. Thank you to everyone who has helped and supported us through all of this. It is so hard to ask for help, but our family is so grateful. Our only wish is for Isla to get better. 💙

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Devon Davasher, LCSW
Little Rock 72207

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