Today we traveled back down to Houston for another round of intra-arterial chemotherapy treatment for Byron. The doctor's said that he wouldn't have any real big side effects from this kind of treatment, but I am not sure that I believe it. He was just not his usual happy little self these last three weeks. First of all, he had double ear-infection, which I know isn't from the therapy, but still added to it all. He didn't really eat very well, and he was pretty fussy most of the time. I can only imagine what the side effects would have been had we chose to go the route of regular systemic chemotherapy.
I am so grateful for this new technology that they have come up with these days for treating certain conditions. So grateful that the treatment is not taking the eye out anymore....could you imagine our sweet baby boy without both of his big blue eyes?? Regardless, we wouldn't love him any less, but it would just be a reminder of what he had to go through for the rest of his life!
Preparing for this trip this time has been a huge bear! I am so grateful for the organizations that are out there to help out with the expenses for this sort of thing, but sometimes it would be so much easier to have the funds ourselves. BUT who PLANS for cancer?? Trying to get in contact with different people, and have them get in contact with others to get things taken care of, and not being able to get in contact with people is, need I say, frustrating! We are so exhausted from it all!
We are, however, so very grateful for everyone's thoughts and prayers in Byron's behalf. Thank you so much for your kindness and love! We love all of you and are thankful everyday for all that is being done for us. Sometimes it is hard to see the blessings through all the trials, but it doesn't take much looking to see that there are many, many blessings.
Just as a reminder, if you would like to donate to aid in in the expenses of treating Byron, there are a few ways to do so.
1)There is a t-shirt being sold, in different styles and sizes and you can go to www.teespring.com/byronsbattle and reserve yours today. There are only 9 days left to fill our order of 30 so hurry and reserve yours if you would like one.
2)Another way is to send a check/cash/money order to Basin Law Group 117 N. Bent St. Powell, WY 82435 and just make sure there is a memo stating that it is for Byron Brown.
3)Last, but not least, you can always click the donate button on this blog and donate safely through PayPal.
Thanks again!
Sunday, May 18, 2014
Sunday, April 20, 2014
Byron's Story
Hello and welcome to Byron's Battle blog.
Byron is a sweet, loving, and sociable little 20 month old boy. He loves to observe and study things with his eyes, faces especially and can just melt your heart with his big blues. At about 4 months old we noticed that he was not developing as he should be. He wouldn't use his arms or hands and he couldn't sit up very well. We had the Children's Resource Center do a developmental screening on him and he was definitely not up to his milestones. From there, we just used the term "low muscle tone" for his developmental delay. After talking to our primary doctor about his delay, he sent us to a pediatric neurologist who stated there was no visible signs of anything he could diagnose. He referred us to a Geneticist who did an exam and also said there were no visible findings. He ordered a lot of blood tests and when those finally came back, there wasn't anything of note.
The next step was a brain MRI to see if there was anything in the brain that was causing a delay. We were apparently set up to see the pediatric neurologist in February and I was not made aware of the appointment until the day before and I had other things planned and thought it could wait. So we rescheduled for May with that doctor. But, we were set up for a Developmental/Behavioral doctor March also. I was very skeptical of going to this doctor because we knew he didn't have any behavioral problems and thought he would just be diagnosed with autism which we knew he did not have. Come to find out, she couldn't see any reason why he was developing slowly and had low muscle tone either. However, she did think we needed to do the MRI and so therefore set it up for the end of March.
Off we went to Billings, MT to get the MRI done. It was a long process and if felt like we were in the hospital for an extremely long time and were ready to just go home. As we were finally walking out to the car to go home, we got a phone call from one of the pediatricians who had taken a look at the MRI. She told us that there was a mass behind his right eye that needed to be looked at by a pediatric ophthalmologist immediately. This doctor was going to be out of town the next week but wanted to take a look at him that day, and 2:00 was the best time. When we finally found the place we were needing to go, it seemed like that we would never see the doctor and were really just about ready to leave because we needed to go home and thought that this was just a joke, there wasn't anything wrong with his eyes or vision, we had already had him looked at when he was younger. In the back of my mind though, I thought, we need to wait, what if this was a tumor that needs to be taken care of.
We finally got to see the doctor and upon initial examination the doctor said he looked fine, but wanted to dilate his eyes to take a closer look. So, there we waited for 20 or so more minutes. When we were called back again the doctor couldn't really get a good look because Byron was definitely not wanting anyone to mess with him anymore. But he was able to get a good enough look and from the MRI he concluded that Byron has a Retinoblastoma. He said, you probably don't know what that is or have never heard of it before. We both said no and let him explain. He said, retinoblastoma is a "malignant cancer of the eye."
Cancer....there that word was again popping up in our lives. How could this be? Why now, there are so many other things going on that we have to deal with? Our brother-in-law just got diagnosed with cancer, why us too? These were some of the many questions and thoughts going through our mind. The doctor told us he wanted us to go to Denver as soon as possible.
To Denver we went. Before we went there, the doctor gave us some options of treatment. He said if he looked and it was small enough he would just take a laser to it and get rid of it. Another option would be to do regular chemotherapy treatments. Then there was another option of sending us to New York or Philadelphia to do a new treatment where they inject the chemo straight into the eye. If it was too large, it would mean loss of the eye. We were hoping it would be small. When I was waiting for the doctor to come out of the procedure, it didn't take long and I knew it wasn't small enough to take care of then. He came out and said that he had a class C size retinoblastoma on a scale of A-E. His recommendation was to send him to Philadelphia for the specialized treatment.
We do not know, however, if this is linked to his developmental delay, but they will also be doing more testing to figure this out too.
Now about 3 weeks later, we are not going to Philadelphia, but we are going to Houston where they will do the same type of treatment. The treatments will be once a month for at least 3-6 months minimum. One round of treatment lasts for 4-5 days. This type of cancer is very rare, only 300 children per year are diagnosed with it in the United States. When caught and treated in time, it is curable, but still very costly as there are only 4-5 medical centers that do this specialized chemo treatments.
Byron is a sweet, loving, and sociable little 20 month old boy. He loves to observe and study things with his eyes, faces especially and can just melt your heart with his big blues. At about 4 months old we noticed that he was not developing as he should be. He wouldn't use his arms or hands and he couldn't sit up very well. We had the Children's Resource Center do a developmental screening on him and he was definitely not up to his milestones. From there, we just used the term "low muscle tone" for his developmental delay. After talking to our primary doctor about his delay, he sent us to a pediatric neurologist who stated there was no visible signs of anything he could diagnose. He referred us to a Geneticist who did an exam and also said there were no visible findings. He ordered a lot of blood tests and when those finally came back, there wasn't anything of note.
The next step was a brain MRI to see if there was anything in the brain that was causing a delay. We were apparently set up to see the pediatric neurologist in February and I was not made aware of the appointment until the day before and I had other things planned and thought it could wait. So we rescheduled for May with that doctor. But, we were set up for a Developmental/Behavioral doctor March also. I was very skeptical of going to this doctor because we knew he didn't have any behavioral problems and thought he would just be diagnosed with autism which we knew he did not have. Come to find out, she couldn't see any reason why he was developing slowly and had low muscle tone either. However, she did think we needed to do the MRI and so therefore set it up for the end of March.
Off we went to Billings, MT to get the MRI done. It was a long process and if felt like we were in the hospital for an extremely long time and were ready to just go home. As we were finally walking out to the car to go home, we got a phone call from one of the pediatricians who had taken a look at the MRI. She told us that there was a mass behind his right eye that needed to be looked at by a pediatric ophthalmologist immediately. This doctor was going to be out of town the next week but wanted to take a look at him that day, and 2:00 was the best time. When we finally found the place we were needing to go, it seemed like that we would never see the doctor and were really just about ready to leave because we needed to go home and thought that this was just a joke, there wasn't anything wrong with his eyes or vision, we had already had him looked at when he was younger. In the back of my mind though, I thought, we need to wait, what if this was a tumor that needs to be taken care of.
We finally got to see the doctor and upon initial examination the doctor said he looked fine, but wanted to dilate his eyes to take a closer look. So, there we waited for 20 or so more minutes. When we were called back again the doctor couldn't really get a good look because Byron was definitely not wanting anyone to mess with him anymore. But he was able to get a good enough look and from the MRI he concluded that Byron has a Retinoblastoma. He said, you probably don't know what that is or have never heard of it before. We both said no and let him explain. He said, retinoblastoma is a "malignant cancer of the eye."
Cancer....there that word was again popping up in our lives. How could this be? Why now, there are so many other things going on that we have to deal with? Our brother-in-law just got diagnosed with cancer, why us too? These were some of the many questions and thoughts going through our mind. The doctor told us he wanted us to go to Denver as soon as possible.
To Denver we went. Before we went there, the doctor gave us some options of treatment. He said if he looked and it was small enough he would just take a laser to it and get rid of it. Another option would be to do regular chemotherapy treatments. Then there was another option of sending us to New York or Philadelphia to do a new treatment where they inject the chemo straight into the eye. If it was too large, it would mean loss of the eye. We were hoping it would be small. When I was waiting for the doctor to come out of the procedure, it didn't take long and I knew it wasn't small enough to take care of then. He came out and said that he had a class C size retinoblastoma on a scale of A-E. His recommendation was to send him to Philadelphia for the specialized treatment.
We do not know, however, if this is linked to his developmental delay, but they will also be doing more testing to figure this out too.
Now about 3 weeks later, we are not going to Philadelphia, but we are going to Houston where they will do the same type of treatment. The treatments will be once a month for at least 3-6 months minimum. One round of treatment lasts for 4-5 days. This type of cancer is very rare, only 300 children per year are diagnosed with it in the United States. When caught and treated in time, it is curable, but still very costly as there are only 4-5 medical centers that do this specialized chemo treatments.
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