Let’s help give Brandon a chance to live!!

1 year ago Brandon was diagnosed with a AVM  of the left temporal lobe
In our local ER. I remember this day like it was yesterday I will never forget the panic I had that day and within  the weeks after. He is a very active kid and has always had severe migraines since he was a toddler. In a situation he was hit in the head with a laptop computer. I went and picked him up at school and he said when it happened everything went black, and he was dizzy.  He kept saying he was dizzy and had a headache. After a few hours of the headache not going away and he still didn’t feel right I took him to the local ER. They performed a CT scan and They then wanted to do another scan to be certain it wasn’t a glitch They vaguely told me what was going on and everyone started running around panicky  they were jumping on the phone to Charleston other doctors running in to look and check his file I knew something was bad wrong then they brought me out of the room to the side telling me that I had to sign papers to transfer him as soon as he was done with the 2nd CT scan by helicopter to Charleston to have brain surgery. I was in total shock and wanted to know what was going on. While the doctor was telling me that they thought he had a AVM but wanted to be certain by performing the 2nd CT the phones were going crazy and I heard two people talking about Brandon and was trying to listen to them and the doctor at the same time but my head was spinning and I felt extremely sick and weak. One was talking with the neurosurgeon dept in Charleston and the other was saying transporting 13 yr old male to CAMC immediately upon approval from CAMC neurology dept. I signed the papers and went and told Brandon I would be right back. I went outside called my husband and lost it completely while sitting in my car. Surgery alone is scary let alone surgery on the brain. I knew I couldn’t let Brandon see me that way so I regained my composure cleaned my face up and returned to my sons side. The doctor came in and pulled me to the side once again and whispered to me I know why you went outside and I thank you for not doing that in front of your son any stress to him could cause a rupture. I still was unaware of what was actually happening and was still in a state of shock. Seeing the doctors all panicked I just knew it was a bad bad thing. They received a call back from the neurologist and they stated he was in no immediate danger and could be scheduled within the week for a regular appointment with the neurosurgeon. So everyone calmed down all of a sudden and told me the neurosurgeon would be in contact with me the next day for a appointment, I was also to follow up with his family doctor. Then sent us on our way like nothing had happened. My legs were weak and wobbly when we were walking to the car. Brandon was unaware of anything that had just happened. 

The next day we went to see his family physician. When he came into the room and looked at his file he looked up with a biggest eyes ever and said why aren’t you guys in the hospital in PA. I told him what the ER said. He then requested the ER records and went to get them when he came back he was panicked like the doctors were the day before. He came and left so many times calling everyone he could think of. While he was in the room he literally looked at my son and told him he may not live much longer. My son was 13 at the time!!!! I was so shocked and hurt and mad all at the same time I felt like I was going to pass out I remember holding back the tears so Brandon didn’t see me cry. He kept saying I can’t believe they didn’t transfer him to PA. He also looked up the credentials of the neurosurgeon and the pediatric neurosurgeon they had referred us to. He told me he would personally not take his child to them. I cannot remember what he said they didn’t have but basically where Brain AVMs are rare he was saying they don’t have experience with AVM to treat them safely. He Also told me surgery was the only answer and to get prepared to live in the hospital for the next year and if he was me he would go ahead and make arrangements (funeral) that way I wouldn’t have to when The time came.  He wanted him in Pittsburgh Hospital ASAP but we could not afford it because the medical card he had at the time would not pay due to their was a pediatric neurosurgeon in the state of WV. He fought with them for months doing appeal after appeal but they kept denying it.

He put Brandon on a lot of restrictions such as no watching tv, being on his phone, or playing his game system for more than 30 mins. He was to be homeschooled. He could not run, or do any activities that would raise his blood pressure. Basically the whole list he gave us Brandon was only allowed to sit. He couldn’t even go for a hike. 
This was extremely hard for Brandon. He is a very active child! He has ADHD! He plays hard all the time. He loves & practically lives outdoors! He loves fishing. He would live at a riverbank or lake if I would let him. He loves hiking and exploring the woods and playing and running with his dogs. He LOVES playing sports. He even says he’s going to be a professional football player when he is older. I have always told my boys they can do anything they put their mind to and to never give up on your dreams if you work hard enough you can achieve anything but until he is treated (surgery) he will never be allowed to play sports including school sports. 

I would like to put in here at this point that he told me two days ago he would never be able to play football like he wants and he had tears in his eyes so we sat down and I gave him a encouraging talk. I promised him I would get it taken care of so he could play. 

Back to the timeline of Brandon’s AVM Journey 

We left the doctors office and I was fighting so hard not to break down in front of him My chest was so tight I thought It was going to snap. I had never been so scared in my life and the maddest I have ever been (for him telling Brandon that he wouldn’t live much longer) plus a variety of other feelings. I was trying my best to stay strong. We were 5 minutes away from our house and I honestly don’t even remember anything after I got in the car. I do remember Brandon was quite and Iasked him if he was ok when we pulled into our driveway he started crying and looked at me and said Am I going to die mom? I lost all control, I know I shouldn’t have in front of him but I couldn’t contain it with him asking me that and the look on his face. I started crying with him and held him in my arms and told him NO YOU ARE NOT GOING TO DIE BECAUSE I WILL DO WHATEVER WE HAVE TO TO GET THIS THING TAKEN CARE OF. He then said ok but it’s crappy I can’t play and we both started laughing while we were crying. 

Next doctor we seen brought a book into the room because he didn’t know what a AVM was. Any questions I had he had to read to answer me. I knew more about it from some research I had done then he did.

Every time I tried researching it I would break down. My husband and I cried a lot the next few months. Everyday was extremely  difficult. It was a good day for us if only one of us cried.

January 2019

The Neurosurgeon appointment finally arrived . Yep the same one they were supposed to get us in that week they found the AVM! It took 2 months to get in. 2 months of thinking every morning is he going to make it through the day and everything the previous doctor had told me going over and over in my head. Sleep was definitely out of the question plus the nightmares I was having! 

By now Brandon was miserable because he wasn’t allowed to do anything. He hated he was gaining weight and brought it up all the time. We had so many talks during this period but I won’t go into detail on all of them. I’ll just say he had a lot of questions and I could see his whole attitude changed during this period. It seemed he matured so much during those two months. He also was being homeschooled and was starting to get  “cabin fever”. On the plus side he LOVED being spoiled. I did whatever he wanted and he got whatever he wanted. He didn’t take as much advantage of that as I thought he would but I could tell he really enjoyed it. 

He loved Fluffy & Bear (his dogs) so much and played with them daily but since the 2nd doctor we seen had told us get prepared to be in the hospital for a year I was also getting everything in order that week after we seen him and Brandon gave his dogs away due to we couldn’t find anyone to take care of them. He cried for weeks when he would talk about them. He missed them so much and my heart broke for him.  FYI after we seen the next neurosurgeon I tried my best to track them down to try to explain the situation and get them back for him and I got as far as they were in DC on a farm but I could not locate the exact farm :( 

Let me get back on track with his journey.

Neurosurgeon appointment January 2019
 
He was scheduled for a MRI with contrast dye the morning of his appointment with the neurosurgeon (I have a picture of him at this appointment I will try to upload). 2 hours later we go to see the neurosurgeon, he was a extremely nice and likable person he was the type that made you feel comfortable and kept joking around with Brandon. We really liked him. He told us there was nothing to worry about and that he doesn’t have any restrictions he can do whatever and be a normal kid as long as we bring him back every 6 months and have a MRI done to check and see if the AVM has grown but he will eventually need surgery he just can’t have surgery right now because the chances of him coming out without being autistic or paralyzed or brain dead or him coming out of surgery at all was only 20% and also if he would make it out of the surgery and being that he was just starting to hit puberty and if  a certain stage of puberty hits then where they have to remove part of the skull to go in won’t heal back together right And part of his brain would be exposed and that would be extremely dangerous to live with.

I told him what the previous doctor had told us and and he said “nah he’s good”. I also told him I had received a letter with a appointment to the pediatric neurosurgeon in Morgantown, which is where most people go with serious medical issues in the state of WV. He stated I didn’t need it he would observe Brandon therefore I cancelled that appointment. 

So my husband  and I were somewhat relieved because he told us no restrictions and could be normal, go back to school, and just watch it for the rest of his life and until it started growing he wouldn’t need the surgery. At that time we needed some good news so we took him for his word (even though I had already started researching more into AVMs and knew in my gut what he was saying didn’t make sense compared to what I was originally told and what I had researched from a tons of sites) but we went on and back to our normal lives anyways.

Even though he had told us that I have a bad gut feeling about everything. Days after Days I would think about it and wonder if we were doing the right things by listening to that doctor.
By this time we had seen 4 doctors total (including ER) and was told something totally different by everyone of them. There wasn’t a day that went by I didn’t think about it. 

6 months later (June)

We go to see the neurosurgeon again for his 6 month checkup they once again did a MRI to check the growth of the AVM. The neurosurgeon told us it had grown but not enough to worry about. I mentioned Brandon has always has severe migraine headaches as far back as I can remember and  he states it wasn’t related to the AVM it was probably something else causing it and I should keep a diary of his migraines.

These migraines basically paralyzes him and he’s crying out in pain for at least 3 hours until he finally falls asleep. We have had to go get him from sleepovers and school because one would happen.


Middle of November 2019 
1 year from discovery of the AVM

Brandon has returned to school and was loving it. He wasn’t struggling like I thought he would be. He was making the best grades he has ever made in middle school he was loving life and back to his normal self.

He decided he wanted to wrestle so we allowed him to sign up. We went  and purchased his shoes he wanted and a starter pack through the school.

I took him for his physical and of course they denied him which I expected. They went ahead and completed it but marked denied,  contingent  Upon neurosurgeons (&his name) approval. I called the neurosurgeons office and spoke to one of his assistants. I told her the situation and asked if they could fax the approval letter (given he told us he could do anything and had no restrictions) they said he was in surgery and they would tell him and that they would send it that evening or the next day.

He went on with his wrestling given what they said.

Fast forward to two weeks later. I received a call and didn’t realize it was them. They left a voicemail and usually I don’t listen because it’s always telemarketers but something told me to listen to it so I did right away and it was the neurosurgeons office. They said Dr ******* (I dont want to state his name) reviewed Brandons file and Brandon needs to be seen in by the pediatric neurosurgeon in Morgantown and get the treatment he needs right away and they were sending a referral and that he wasn’t to wrestle and was supposed to be on restrictions. I was in total shock once again. After 2 mins of feeling stunned I called them back. A message stated they were now closed. I tried the next day and they were out for the holidays. A week goes by I try again on a Monday (after Thanksgiving), No answer so I left a message. I had tons of questions and didn’t understand why they were out of the blue doing this! To this day I have not received a call back or a appointment from the referral they stated they were making. 

Reminder that he told me he I didn’t need to go to Morgantown’s pediatric neurosurgeon so I cancelled the appointment that was 8 months earlier. He also said NO restrictions and then leave a message that he was not allowed to wrestle he was to be back on restrictions!!

I was so upset and confused. I was tired of them bouncing us from doctor to doctor and everyone of them telling us something different! So I took matters into my own hands! I sucked it up and went to research deeper. Before I would get upset and stop reading the articles. I’ve always heard not to go online because it always makes it sound worse that what it was no matter what medical condition you are researching.

Now I started reading every article I could. I would stay up all night sick to my stomach from all of it and I would watch videos on AVMs on YouTube. I have discovered one of the main signs of a AVM is headaches-remember the doctor told me they were not associated. I also learned that a AVM needs treatment right away. Each year that a AVM isn’t treated the risk rate goes up 2.5% He is now 14 so 14 times the 2.5% plus the (I believe it said) 15% so to me that is saying now his risk rate is at 50% I’m sorry but I don’t even want his risk rate to be at 1% let alone 50%!!!! I researched doctors and did not want to go to another “middle man doctor” that would send us to another and so on. I tried with multiple hospitals such as Shriners etc and hit a dead end everytime. I was told I would be responsible for the cost of flying in a specialist to treat him. So I continued to look. I finally found that the US experts on AVMs were located at the Mayo Clinic.

I requested a appointment online Sunday November 8th. They called me Monday November 9th and I went through a bunch of initial questions. They stated I would have to take him to Arizona (30 hours away). Which I don’t care if I have to take him to Mars to get him treatment to get better. I would travel the world and back for my boys! They continued with basic details questions and then transferred me to their neurology department. I gave them consent to request his records. The only records they could get immediately was the notes from the neurosurgeon in June. They could not access the MRI or other doctors. She read the notes and then said “Huummm looks like we need to get him in right away. You’ll need a few days to get your affairs in order and a few days to travel. Can you be here Monday 16th at 7:30am. By her tone and what she just said my heart once again dropped. Why do they need him there right away what are they not telling me?? I’ve asked and they won’t say!! Ive noticed most doctors are like this!! I understand that they don’t want to tell you news that you will panic about but the unkown is what tears me up!!! The what if’s and why’s it consumes my thoughts!! I try not to but he’s  my baby boy and how can I NOT worry!!!

Well given they told me I would have to pay $5000.00 1hour before his appointment I had to tell her I could not get that much together by then. I felt like a total failure as a mother! I started crying at this time and she was so nice and sympathetic it helped calm me down. She then asked if I could make it by  Dec 31st. I still did not know if I could come up with that much by then. I hate to admit it but this year has been the 2nd worst year we have had financially. Then she said that he really needed to be seen as soon as possible and could we get it by January 6th. I told her I would come up with it somehow. 

We knew we would have to pay upfront we just wasn’t aware of how much so our only option was to start the process to refinance our house. Given that the doctors we had previously seen had scheduled us months out I thought the Mayo Clinic would do the same and we could possibly have that money in time. That was not the case. I have sit and thought of different ways to try to come ya with the money. Honestly I do not know how much we will need I know we will have $5000 advance payment for sure plus at least 4 nights motel  costs, plus travel cost, gas cost, food cost etc. From what they told me today He will be there for 2-3  days for certain for testing but could be up to 6 months! How do I plan for that. I won’t be able to leave my sons side! To not know until when we get there to be 2-3 days up to a month!! So that is why I am not sure exactly how much is needed I do know they quoted the surgery cost of needed is $70,000 to $130,000 but I will cross that bridge if that is what they decide to do, all the doctors have said it HAS to be done or it will eventually rupture! After the testing then they will decide his best form of treatment.  The treatment options are
1) Radiation- this process is done  for years and has no guarantee of working. After more research with this I personally do not like the chances of it not working after years of radiation treatments. 
2) Surgeries- 2 surgeries the frost one they will go through the groin up to his where the AVM is located and clog it with a glue like substance. It will clog the blood flow off to the AVM that way it reduces the risk of bleeding when the go in to remove it the next surgery. That surgery they will have to remove part of the skull and go in to remove it.

I hate to ask for help! But it’s my sons life I have to think about. I have always been able to provide well for my family in the past but I had to close my shop due to some medical issues I was having myself January 2018. I do what I can now to support us. We make enough to pay what we have to but there’s vary rarely anything extras left. If I could make it on my own I would but I’m scared I won’t be able to. It’s crazy that for years I was the one that everyone came to for help and now the tables have turned. 

Also if you would like to know all the details on a AVM just google AVM and go click onto the Mayo Clinic article. 

I was told by the doctors to describe it easier that it was a start of a aneurysm. I was also told “you hear of these kids playing sports and just falling over dead?” I answered yes and he said 90% of them had a AVM that they did not know about and it ruptured.

I know we are blessed that that found it and we have a chance to save him! I thank God for that. I look back and everytime he started a sport something major would happen before he could even play and would have to quit. Stuff such as broken arm etc. I think that was God protecting him after what that doctors told me about the kids that had passed while on the fields. 

Even if you think you are unable to help you can still help by saying a prayer for him. 

I would like to thank all of all of you for reading Brandon’s AVM Journey. I feel like I just wrote a book lol. This kid has had so much happen to him, he was even hit by a car when he was 11!!! Please let’s come together to help him.