This is something i never thought i would have to do, but unfortunately here it is:
Let me introduce you to my grandson. This is Asher:
Asher was 10 months old when this picture was taken in September 09. He seemed like a perfect bundle of health. Three weeks later he was fighting for his life. On October 5th, after a couple of weeks of doctor and ER visits, he was diagnosed with a brain tumor and immediately taken to PICU. They had to drill a hole in his skull to relieve the pressure that was building up because the tumor was blocking the spinal fluid to drain properly.
Here is Asher in PICU on Oct 9th:
On October 9th he underwent brainsurgery at the Children's hospital in Oklahoma City to remove the tumor, the surgeon was sure she had gotten all of it and we were thrilled to hear the news and then we were told that the tumor is malignant.
The name of the tumor is extraskeletal myxoid chondrosarcoma (EMC). Average age for humans that have this type of tumor is 40yrs and up and it is even more rare for it to be in the brain. The doctors explained to us that they were baffled because they have never treated of a case like this nor have their expert colleages around the USA who were consulted, one said that he has HEARD of one case. This type of tumor does not respond well to chemo so the doctors are looking at localized radiation. We will know for sure how long and how often he will go thru these treatments tomorrow when we go see his oncologist.
My daughter spent day and night with Asher while he was in the hospital till his release last friday.
Here is the reason for this post: my daughter has been unable to work because she needs to take care of him, she is on unpaid medical leave from work. Even though his medical cost is covered they are still facing basic expenses such as rent, food, utilities, gas to drive back and forth to hospital and doctor visits. Asher will most likely be in and out of the hospital for the next year. Her dad and I are planning to help out as much as we can but i decided to start up a fund for Asher to hopefully give my daughter some peace of mind so she can fully focus on getting Asher healthy without worrying about paying her bills. They can use all the help they can get and even more importantly they need all the prayers they can get also.
If you would like to contribute to Ashers fund you can do so by donating here:
or you can also send your donation via paypal to his account. The email address is Ashersmedicalfund@gmail.com
No paypal? No problem! If you would prefer to send a donation to Ashers fund you can do so by sending it to:
Allegiance Credit Union
Asher Reynolds Medical Fund
Account: 384045
101 N. Robinson, Ste 210
Oklahoma City, OK 73102
Any questions about Asher? his treatment? you can email me at bkokc00@gmail.com, i'll be happy to answer any questions!
If you would like to read more about his journey you can visit his website here: http://www.caringbridge.org/visit/asherrayreynolds
Thank you for reading my post and please keep him and his mommy in your prayers!
**update**
We saw the oncologist today. She suggested for Asher to go thru radiation for 6 weeks, 5 days a week. He will go to another facility to do this radiation because it is something called Proton Radiation Therapy. The difference between old style and Proton is that with the old style the radiation treatment damages anything in the way including healthy tissue. Proton is a new type of radation that minimizes damage and has a more powerful effect. The doctor is trying to get rid of any bad tissue that surrounded the tumor. Ashers pituitary gland will be damaged during this treatment and he'll require to take hormones for the rest of his life. The doctor said she thinks it's worth it, if this tumor returns it would mean another brain surgery and she said the chances of them being able to remove the whole tumor again are very slim. We are very greatful that OKC is offering this new type of treatment, i heard that it's 1 out of 6 machines in the whole USA. So keep praying for my little buddy Asher!
**update 11/20/09**
We found out three weeks ago that we have the newest technology in radiation available right here in Oklahoma City. There are only six locations in the United States that offer it at this point. We were delighted, it's called Proton Beam Therapy, a type of radiation that minimizes damage to the healthy tissue. Exactly what we needed, we are talking Braintissue here, of course we do not want to destroy healthy tissue. They told us that they needed to find a pediatric anesthesiologist to sedate Asher during radiation, since it's targeted he can not move. It seemed to be the least of our worries.
Asher had another appointment with his oncologist yesterday, she informed my daughter that they can't find an anesthesiologist to do it. The treatment center he was supposed to go to will not have an anesthesiologist under contract till maybe January. She wants to do another MRI on sunday, see what his brain looks like, are there any changes? Has the tumor started to grow back? Does it look ok? We will see. If there are changes and they are not good she wants him to go to M.D. Anderson in Houston, if there are no changes she will talk about our options: go ahead and go to Houston anyways or wait till January for the treatment center here (IF they are for sure they will have an anesthesiologist by then). She said that she does not want him treated at her hospital because all they have available is the old style radiation. The type that destroys a LOT of healthy tissue. We are so greatful to have this doctor, she cares. She cares for Asher to get the best treatment available to him and if it means sending him away, so be it.
We are nervous about tomorrow. Scared. What will the MRI show us? My daughter is prepared to do whatever she needs to do to give Asher the best chance she can. She's 20 years old. She's been the best mommy thruout this, I'm so proud of her. She's dealt with so much while trying to care for Asher, a blown motor in her car, not being able to work since Ashers diagnosis, finding out her granny has 2 braintumors and stage 4 lung cancer, Ashers father that decided everything was just too much for him and walking out on her. She's one strong girl, I admire her strength. Now she's looking at maybe having to leave home to go to Houston for 6 weeks, the same girl that is scared to be in her apartment alone at night, she doesn't think twice about going if she has to. My daughter is my hero.
**update 11/22/09**
Ashers MRI showed no sign of the tumor returning so far, we are still waiting to hear where/when radiation will begin.
**update 11/27/09**
Dr McNall said that the Proton Center in OKC can't guarantee to start therapy in january and she suggested for Asher to go to MD. Anderson in houston for the treatments, now we are waiting to hear if they take his insurance and if his insurance will cover out of state treatment.
I also heard today that the newspaper in Gainesville Texas would like to do a story about Asher. His great grandparents live there and are well known in the community/church. So excited to get the word out and maybe it will help other parents also.
Britta
Ashers G'ma
