A new blog

A few days ago i decided to create a new blog so i can update about Asher in one place instead of here. Please feel free to check it out A prayer for Asher

One year..since a baby angel went to heaven

It's been one year since the day that i lost my grandchild. One long year. Not one day has gone by that i didn't think about that little baby, wondering what he/she would have looked like, why things went so terrible wrong.
I remember everything from that day, the look on my daughters face, the scream, the crying...complete disbelief. We weren't prepared for something like that, i just started to figure out how we will handle it all and before i knew it ..gone.
How can you explain? How do you answer the questioning look from your daughter? How do you deal with not being able to make it better, you are mom, you should be able to make it all alright..
I will never know, rest in peace sweetie,love you little baby angel, you will always be in my heart.
Grandma

C-A-N-C-E-R

C - Childrens Hospital in Oklahoma City, the best place for any sick child in the state of Oklahoma!
A - Asher, a 1 year old boy with the biggest eyes and the cutest smile, fighting a disease no child should ever experience.
N - Neurosurgeon Dr. Gross and her team who performed his surgery, they work miracles each and every day.
C - Caringbridge, a personal website for patients http://www.caringbridge.org/visit/asherrayreynolds
E - Extraskeletal myxoid chondrosarcoma or EMC, the type of tumor that was removed from Ashers little head
R - Radiation, the treatment Asher is facing since EMC does not respond to chemo, he will do a new type called Proton therapy

One question that makes me cringe: What is his survival rate?
My answer: 100%, because honestly we never asked any of the doctors. Why? Who cares? Does it make a difference if they told us 10% or 50%? He's not a number and he will fight his best fight and will beat the odds...well whatever those may be.

Read more about Ashers story here.

Living with Cancer-My daughter is my hero

I never really had to deal with cancer in my life. My dad had cancer and passed away shortly after, this was in 1998. I never knew. He was in Germany i was in the States, he never told me. I remember how angry i was at him, I was daddys little girl, why didn't he give me a chance to say goodbye. After a couple of years i understood, he knew if he told me i would be on my way home immediately, then what? Sit and wait for him to die? I had two children to take care off. It was his final gift to me.


Today I understand it even more so. Dealing with Asher and his cancer has to be the most frustrating thing I ever had to deal with. The up and downs. The hope the disappointments. Learning about the tumor, relief that the tumor was removed, finding out it's malignant. It's a constant struggle. You feel like you are going one step forward and two steps back.


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.


**If you are wanting to help her and Asher out in their journey check out this post for the donation link, or email me at bkokc00 at gmail.com if you want to help in any other way, and please pray for Asher and his mommy, Thank you and god bless**

Asher and his mommy need your help

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

Helping Asher and his mommy beat cancer!

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

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!
Britta
Ashers G'ma

Asher is turning 1 today

Flashback to 2008...

November 3rd 2008


This monday was filled with fear and excitement, we had to be at the hospital early in the morning for the scheduled c-section. After getting mom and dad ready and prepped they wheeled my daughter into the OR, i always wanted to be there for the birth of my grandchildren and now i couldn't, they would only allow one person to be with her. I was sad but i knew it wasn't my place to take that spot, all i could do was to wait outside. Everyone was there, it was nice to see the support of two completely different families, coming together for this special event.

It seemed to take forever, finally they wheeled my daughter past me, all i could see was her crying. We ended up waiting for a long time, i guess grandparents don't have much of a right when it comes to finding out what the status is. When we couldn't bare the unknown anymore we finally found out that the babys heartbeat wasn't regular, the dad was with the baby in the nursery while they were monitoring his heart. We heard hushed conversations of a possible hole in the heart, reality set in..this could be serious.

My ex got tired of the waiting, we hadn't heard anything about our daughter, he approached the nurses and made it clear he wanted anwers,it's been over an hour after birth, they said they would allow her mom to go in.

My daughter was beside herself, she wanted to know why they won't let the baby in the room with her, the nurses kept telling her she needs to rest, i finally spoke up and said:"she won't rest till she knows her baby is ok". After another hour or so they finally gave the ok for the baby to go to the room, his heart was fine and beating regular, no hole in the heart. what a relief.

November 3rd changed my life, i never thought i would be able to love another human as much as i do my kids, then this little bundle of joy appeared and stole my heart.

Asher

6lbs 14 ozs ,20 inches long

Happy birthday little Asher Smasherman, g'ma loves you bunches and bunches

An update on Asher

and an update:




they finally figured out what type of tumor it is, and well it's not pretty. the name is:


extraskeletal myxoid chondrosarcoma or EMC, this according to the doctor is an extraordinary rare tumor for a child (average age of patients with this tumor is 40 or older) and very very rare to be seen in the brain.


So here is the dilemma, since it's so very very rare they are not sure how to proceed. Chemotherapy has not been very effective with this type of tumor and radiation in mass is bad enough for an adult but for a baby his age it would cause long term damage, severe damage.


They are now weighing the risks, try chemo and put him thru it and hope for the best, or do nothing and monitor him and see if the tumor develops again and then proceed with treatment. I think they are leaning toward waiting. This is unchartered territory for them and appearently for the whole medical field dealing with this tumor in a child, the doctor that explained this to us has 31 years of experience, he worked at st judes for 14 years, the sarcoma expert is a world leading expert when it comes to sarcomas in children but this has them baffled.they reached out to their colleagues nationwide and one replied to them that he has HEARD of one case.


All i know right now is this:


i will treasure every minute with this boy


we are looking at a bomb that might go off and then it might not


i do know we have the best doctors available


i always thought our little asher was special, but never realized he was THIS special, sadly
keep praying please!

My grandson Asher

My grandson Asher, 11 months old, was diagnosed with a braintumor on October 5th. After 3 ER visits in 3 days and being sent home with "gas and constipation" "dehydration" "teething" we finally ended up at Children's hospital in Oklahoma City. They were determined to find out what was wrong with him and after 8 hours in the ER ordered a catscan and that's when they found the tumor.
He went thru brainsurgery on October 9th, the surgeon Dr. Gross was amazing and was able to remove the whole tumor without causing any damage that we can tell yet. They did a quick test when they removed the tumor and it looked like it was malignant.


The doctor sat down with us yesterday, they are still trying to figure out exactly what the tumor was but here is what they do know:




it's cancerous


it's aggressive


it's very very rare


and the cells multiply fast.


So that said, since the tumor has cancer cells that multiply quickly they are pretty sure while it was in his brain it has sent out cancer cells also, which means chemo, very aggressive chemo.


We are looking at 27 weeks of treatment, my daughter will have to be in the hospital with him 4-5 days to do chemo treatment, go home, go back 2 weeks later repeat chemo.


In between they are talking stem cell harvesting, bone marrow transplant , possible radiation etc, which requires hospital visits also. Basically the next 27 weeks my grandson will live most of the time in the hospital.


Since it's a very rare tumor they are sending part of it to pathologists thruout the USA to get opinions, they will also discuss his case with the top pediatric neursurgeons and ped. oncologists nationwide and get their input on how they would treat him and if they agree with the treatment plan that they told us.


We don't have any guarantees. I am angry, so angry because no child deserves this, i am sad looking at this perfect little boy and knowing the suffering he's facing but i'm also determined. I'm determined that we will put up the best fight we can to beat this, at this point we don't know how we will handle it all, but whatever it takes we will fight for this little boy, because we love him.




Say a prayer, thanks.

I'm not a photographer..

and i don't claim to be great, but every now and then you take a picture and think..wow..what a shot. Here is mine, this is my grandson

Remember the baths in the sink?

Seems like it was just yesterday when my kids were in Grandmas sink..of course we can't break traditions so here we are 20 years later..
Asher in MY sink:




Can you blame me for loving this boy to death?

Summer+Baby=Cuteness!

What a wonderful way to wrap up a busy weekend..sitting by the babypool watching my grandson having a blast...Love you with all my heart little man = )