The blue mask

SONY DSCIt is Halloween today! This is a day where a lot of kids and adults wear masks to pretend they are someone or something else. In the past my wife and I have held Halloween parties and dressed up in couples costumes (my favorite was me as a gunslinger and her as a barmaid). Between my being on chemo and us traveling to get our youngest son seen by a specialist, no costumes or parties are happening this year. Even so I will be wearing a mask this year, it just happens to be the mask I wear every time I go out now that I am on chemo. In this post I will blog briefly about the blue mask.

Since I’ve started chemo I tend to stay out of public as much as possible. My immune system gets trashed by the drugs I’m taking and I have to do everything I can to reduce the risk of catching any viruses or diseases. Of course that doesn’t stop me from going to events my kids are participating in. When I do go out I wear the blue mask.

Wearing the blue mask and being bald definitely makes me stand out. I’ve noticed everyone looking at me while trying to make it seem as if they aren’t looking at me. That really doesn’t bother me. The best is the times I have to go into the school for my youngest sons. When going through the elementary there are some younger children who say hi to me and ask if I am a doctor. That always gives me a smile.

I’ve been in contact with other chemo patients that don’t wear the blue mask. Some of them believe the blue mask does very little or they don’t want attention drawn to them. Personally I think the extra precaution is warranted, especially since it is such an easy step to take in order to protect myself. Actually there has been a lot of cases of pertussis (whooping cough) going around at the schools. I really don’t want whooping cough while my immune system is compromised. So I will continue to wear my blue mask when out in public.

Tonight I will be around my little nieces. While they are dressed in their costumes I will be dressed in mine: a surgeon! I guess I am dressing up for Halloween after all.

Got my bone shot today

20815350Every four weeks I have to get a shot to rebuild my bones. This is due to the fact my cancer has spread from my lymphatic system and into my bones, known as bone metastasis. The drug I take is called xgeva, also known as denosumab. In this post I will briefly blog about what xgeva does.

Xgeva (denosumab) is a drug often used to treat osteoporosis and hypercalcemia. Recently it has also been used to treat bones which have been weakened by cancer. Since my cancer has spread heavily to my bones I am at risk for bone-related injuries. Actually I probably already broke or fractured a pinky finger last month. My pinky is mostly healed now, although I am still waiting to lose the nail. Hopefully this xgeva shot will help prevent any further bone injuries and reduce the bone pain I am experiencing.

How Xgeva works is pretty cool. There are cells in our body that continuously break down our bones and other cells that continuously rebuild those same bones. The balance between these cells doing their work allows bones to be healthy. Certain conditions such as cancer in the bone marrow throws this whole system out of balance and bones can become too broken down. Xgeva is basically an antibody which interrupts the proteins that break down the bones. The benefit of this is the bones are allowed to be rebuilt and be strengthened.

I had my first xgeva shot on my second round of chemo, which was exactly four weeks ago. Every four weeks I will continue to have xgeva shots. So far I haven’t had any noticeable side-effects from xgena. I believe the pain I feel in my back has been going down, possibly due to my xgena injections. Hopefully this round of xgeva will bring my bone pain down even further.

Adults have parents too

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My parents and my boys.

Parents want their children to be healthy and live longer than them. As a parent I worry about the health of my youngest child. After visiting with my parents this weekend, especially with my mom, it occurs to me this extends to children who are adults as well. In this post I will briefly blog about some ways my mom is impacted by my cancer diagnosis.

Before going on I will say I think I have the best parents. I think my mom and dad did the best to raise me and my brothers with what they had available. As my wife and I raise our children I tend to look back to what they did as guidance.

During each step of my cancer diagnosis my wife and I have made sure to keep my mom in the loop. She got calls when I went in for a biopsy, got the biopsy results, saw my PET scan results, had my port installed, went in for my first chemo treatment, and so much more. Each step of the way she had to wait on the phone and hope for the best. Being two hours away she simply can’t just drop by. The emotional stress of waiting each time must be almost unbearable at times.

Actually it really doesn’t even matter how far away my mom is. Since I’ve started chemo both my mom and dad have been battling their own health issues. Because of my immune system being so low they have not dared come visit me until this previous weekend. I can’t imagine the tremendous emotional strain this has been for my my mom. I’m sure many people are asking her how I have been responding to treatment, and she has been unable to say something like “yeah, I saw Ken the other day and he is looking good”. Hopefully we can all stay healthy enough that we are able to keep seeing each other more often.

But it is not just me that my mom is being kept away from. My youngest son Ashton has health issues, which appear to be getting worse. The middle son Lawson is definitely a grandma’s boy, and she has been unable to see him. And of course my mom sees my wife Mindy as one of her own children. My mom has been staying away to ensure I don’t get sick, but in doing so she has been unable to enjoy her grandchildren and comfort her daughter-in-law. This further adds to the emotional stress she is enduring.

I do believe this blog has been helping her cope, and she has said as much. In this blog my mom is able to better understand what I am going through. When friends and family ask about me, she is able to refer to my latest blog post. In some way this blog can help her to share my cancer experience, something I think as a parent would be invaluable.

I’m actually going to keep my word and make this a short post today. All I really wanted to do in this post is to briefly highlight that the parents of cancer patients are greatly impacted; especially if their children are adults and no longer living at home. Even adults have parents…

Multimedia Friday – Videos to explain cancer to kids

Its multimedia Friday again. Today I thought I would post a couple of videos to help people explain cancer to kids. I know my kids have had questions about cancer and I think my wife and I have done a fair job of explaining things to them. But I also think using videos such as the ones below can be helpful to supplement talks with kids.

I think this first video is great to explain to kids how some things might change when a family member has cancer.

This next video has some tips for parents about how to talk about cancer with children. The narrator of the video focuses on a couple of different age ranges.

Finally this last video is an animated video to possibly help younger children understand cancer in a visual way.

Bonus Video

This weeks music video is from the Danish Band D-A-D. The lyrics from this song hit home for my cancer diagnosis. Especially the line “I got run over by truth one day”.

Stages and Grades of lymphoma

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Maybe not the kind of stage I’m talking about in this post.

When people ask what type of lymphoma I have the answer I usually give is grade 2 follicular lymphoma. This is what the diagnosis on my chart says. My wife will usually say I have stage 4 follicular lymphoma. Both answers are technically correct. In this post I will explain the difference between grades and stages.

 

Lymphoma Staging

Lymphoma action has a good page explaining staging and includes pictures. Here are the four stages of lymphoma.

  1. Stage 1 – In stage 1 only one group of lymph nodes has lymphoma. Stage 1 can also mean the lymphoma has started in a body organ, but hasn’t spread anywhere else; that would be known as Stage 1E, or extranodal lymphoma.
  2. Stage 2 – In stage 2 there are two or more lymph node groups with lymphoma. These groups must be all above or all below the diaphragm to be considered stage 2. Stage 2 also has a form of extranodal lymphoma. It would be called Stage 2E and the lymphoma would be in one organ and at least one group of lymph nodes on the same side of the diaphragm.
  3. Stage 3 – In stage 3 there are lymph nodes both above and below the diaphragm with lymphoma.
  4. Stage 3 – In stage 4 the lymphoma has spread to at least one organ, such as the lungs or bone marrow.

After the stage there can also be an A or B. If the person with lymphoma has certain symptoms they are considered to have “B” symptoms. These symptoms can include unexpected weight loss, night sweats, and fevers. The existence of B systems in any stage of lymphoma may impact when treatment starts.

Non-Hodgkin Lymphoma Grades

There are three grades of lymphoma. Basically the lymphoma grade shows how fast the cancer cells are growing and how likely they are to spread. Grades 1 and 2 are considered low-grade or indolent. Grade 3 is considered high-grade, or aggressive. Grade 3 can also be split into 3A and 3B. 3B is usually treated different because it is very fast growing.

My Non-Hodgkin Lymphoma Stage and Grade

My lymphoma is staged at 4B. As I saw when looking at my PET scan, I have lymph node groups from neck to groin infested with lymphoma; which means I am at least stage 3 because lymph node groups above and below my diaphragm are infected with lymphoma. My bone marrow and one of my lungs are also infected with lymphoma; which means I am stage four because of the lymphoma being spread to other organs.

I have the B on my stage because I was suffering from “B symptoms” when being diagnosed. I definitely lost more than 10% of my weight in half a year and I was experiencing night sweats. Another possible B symptom I was experiencing was itching all over my body at night for no reason.

As I noted before, my actual diagnosis is grade 2 follicular lymphoma. This was determined by my biopsy result. A  microscope was used to count the cancer cells and the lab determined I had grade 2 follicular lymphoma. The biopsy was also used to determine I have follicular lymphoma, which is a type of Non-Hodgkin Lymphoma.

The key thing to remember about staging is that it explains how far the lymphoma has spread. For grading the key thing to remember is that it explains how fast the lymphoma has spread. The fact I have low-grade lymphoma is probably the reason my stage is at 4B. I have likely had lymphoma for a very long time, but since it was slow-growing and I was not experiencing any B symptoms I had no idea there was something wrong.

My wife thought chemo went differently yesterday

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The wife fretting over me.

Yesterday I blogged about my third round of chemo. Overall I felt it went well, even with my blood pressure dropping quite a bit. My wife Mind however remembers yesterday differently. In this post I will briefly blog about how she though this round of chemo went.

 

First off Mindy agrees that my blood pressure was dropping. But she doesn’t see it as being no big deal. In fact her and one of the nurses were worried a bit because my blood pressure was dropping much quicker than it had the previous two rounds of chemo. My initial blood pressure was 130/68. It was 99/52 the last time it was checked. Telling her this is a known possible side-effect doesn’t make Mindy feel any better. It is just one of the things my poor wife has to worry about while I am on chemo.

Another thing other thing Mindy worried about yesterday was my dizziness. During this round dizziness seemed to be a larger side effect that it had been in the past. Even if I got up slowly to go the bathroom I would experience some dizziness. Mindy said it looked like I was about to fall over and I was very unsteady walking to and from the bathroom. I really think she wishes I would have called the nurse. But I couldn’t see calling a nurse for doing something so simple as walking to the bathroom. Mindy might have been right though…

Finally Mindy mentioned I was not sleeping as hard as I had during the previous two rounds of chemo. The Benadryl definitely knocked me out. But this time she said I would keep sitting forward in my chair and it would look like I was about to tip forward out of said chair. I don’t recall doing this. But I expect I was doing so because my back pain has been getting worse over the last few weeks. The shot I take to rebuild my bone marrow probably has something to do with my back pain getting worse. Sometimes the shots of pain I get are debilitating. But it doesn’t last long at high levels of pain and usually settles down to about a six on my pain scale. Mindy was definitely worried about this happening during chemo and me possibly falling forward onto my face.

I’ve said it before that chemo is hard on my body. It is also hard on my psyche at times. But I think in some ways Mindy is under much more mental stress due to my cancer than I am. It doesn’t help matters that we have a son with medical problem just as bad if not worse than my own. Hopefully I can find a way to reduce some of the stress on Mindy. She really has been a large reason I have coped so well with cancer so well.

Low blood pressure during chemo

22376520Today I had my third round of chemo. By this point I don’t even fret about chemo days anymore. One of the first drugs they shoot me up with is Benadryl, which knocks me out for the next few hours. The only chemo day side-effect which is somewhat troubling is my blood pressure getting low.

My blood pressure was 130/68 at the begging of this mornings appointment. As each IV bag was given to me the blood pressure would be checked. After taking the first IV R CHOP drug (I believe it was the rituximab) my blood pressure dropped. It dropped even further after the other three chemo drugs. At the end  of chemo my blood pressure was 99/52. My bottom number technically fell into low blood range since it is under 60. The nurse was concerned about this. But my blood pressure did this the last two rounds of chemo as well. I’ll just take it easy for the next couple of days for my body to recover from the chemo drugs.

In researching R CHOP blood pressure problems I’ve noticed this is a somewhat common side-effect. My advice to others on chemo is to not be overly worried about blood pressure drops as long as the nurse is continuing to monitor the decline. But just like anything if the low blood pressure continues after going home I would definitely call the doctor! The low blood pressure may not be an immediate concern, but it could turn into a very bad situation if allowed to get out of control.

Working while on chemo

Desktop of the businessman.One of the most common questions I get from people is whether I am able to work while going through chemo. I do work, but it is greatly diminished from what I was once capable of. In this post I will briefly blog about my current work experience while going through chemo.

The type of chemo I am going through is called R CHOP. It is a very aggressive type of chemo and is very hard on the body (but then I have yet to hear of a non-aggressive type of chemo). I have chemo once every three weeks. On the day of chemo and the two days following I am basically unable to work at all. Fatigue hits heavy on these days and I sleep most of my day away. Actually I look forward to these days now, because I know for at least a few days I won’t suffer from insomnia. At the same time though it means on these days I cannot work.

Earlier this year I had already started to work from home most days. This was not done because of my cancer. Instead I started to work from home three to four days a week in order to take care of my youngest son. By summer I was rarely able to make it to the office even once a week due to breathing problems. When I started chemo it was time to face the fact I should not be in the office at all. There are too many customers who come into the office sick. With my weakened immune system it just doesn’t seem worth the risk to come into the office when I have the option to work from home. The biggest downside to working completely from home is that it feels like I’ve abandoned my wife to run the office by herself. Actually, cleaning out my office was one of the hardest things I’ve done since being diagnosed with cancer.

Working from home may allow me to keep away from germs. But it doesn’t mean I get a lot done on the typical day. The brain fog I suffer from seems to get worse every day. On some days I can only work a few hours before the brain fog gets so bad that I can’t even put two thoughts together, much less work. On other days I can put in a good six or even eight hours of work. There is no consistency about how much time I am able to work. I have found that if I spend an hour playing word or logic games before I work, that I am able to use my mind for work longer. Also the days I am able to work longer I am doing tasks such as archiving old files in our database. This is a long monotonous process which requires very little brain power. Even if it is monotonous it does at least give me something I can do when the brain fog sets in.

I am somewhat lucky that I am able to work from home. Many cancer patients don’t have this option. Hopefully by the time busy season begins for the office I will be done with chemo and my brain fog will lift a bit. No matter what though I am more than happy to do whatever work I can from home. It is much better than just sitting around thinking about cancer.

Multimedia Friday – Video explaining follicular lymphoma

Cd player

Last Friday I posted a playlist of five songs I found on YouTube to help explain the cancer experience through music. I also had a proud dad moment and posted the video of my middle son marching in his High School band. Going forward I think I will continue to post videos and songs on Fridays.

This week I will post an informational video I found earlier this week. I sent a link of this video to a good friend to help him understand the type of cancer I suffer from. Since he thought it helped him to understand my diagnosis, I hope this video will help others understand follicular lymphoma.

Bonus Video!

I can’t go without posting a song as well. This weeks song reminds me of the brain fog I suffer from. I know Jimmy Hendrix did write this song about cancer. But the opening verse to Purple Haze sure feels like cancer induced brain fog:

Purple haze all in my brain
Lately things don’t seem the same
Actin’ funny, but I don’t know why
‘Scuse me while I kiss the sky

Ashton’s medical problems

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Ashton getting some pain relief from heated up rice bags. He generally stays in good spirits even when in a bit of pain. 

This particular post won’t be about cancer. I’ve mentioned a few times on this site that my youngest son Ashton has medical issues. In the past I’ve used Facebook to keep family and friends updated as to his status. Going forward I am going to share the updates here. To get everyone up to date I’ll do a not so brief summary of what has happened with Ashton over the last year.

Ashton’s story began a little over a year ago when the wife and I were moving our family to a new house on the lake. All three boys were helping me clean out the basement in our old house. Somehow he fell into a plastic bin while carrying a picture. Ashton then began to cry and said something was wrong with his shoulder. I took a look at him and it appeared his left shoulder had kinda come out of its joint. I say ‘kinda’ because I’ve seen dislocated shoulders before, and this didn’t quite look like that. His arm was just hanging as if there was no shoulder. This is a condition we called “dropped” in our household now…

I gave my wife, Mindy, a call on the way to the Emergency Room and she met us there. The doctor at the ER seemed as confused as I was about the appearance of his shoulder. After an examination and x-ray the doctor said she couldn’t find a reason for the way Ashton’s shoulder was hanging. After conferring with another doctor on the phone, the ER doctor prescribed Ashton some muscle relaxant. It seems too long ago this, happened I can’t exactly recall the reason for the muscle relaxant. Ashton was in gymnastics during the summer, and we thought maybe he did something to his shoulder there.

For a couple of weeks things went fine. The muscle relaxer seemed to fix his shoulder issue. Then I received a call from Ashton’s school. He was in pain and his shoulder was “dropped” again. I still had some muscle relaxer and brought that to him. That seemed to fix the problem again, although it took a few hours. In the mean time we set up an appointment with an orthopedic doctor for Ashton. The referral for this doctor actually came from the ER doctor, although I had yet to set up the appointment because he seemed to be fixed. During the weekend prior to the orthopedic appointment his shoulder dropped more often. We realized by this time the muscle relaxer was doing nothing. Whether he had muscle relaxer or not, his shoulder would drop for a few hours and go back to normal as long as he didn’t overuse it.

When we finally had the orthopedic appointment Ashton’s should was dropping more often, at least once a day. He had a full exam. The orthopedic doctor put Ashton through a series of motions and tested his muscles and bones. The doctor noted Ashton had very strong muscles and there didn’t actually appear to be anything wrong with his bones. However (and isn’t there always a however), he said the problem is more widespread than just one shoulder dropping. With Ashton’s shirt off the doctor had us look at his back. To me his back looked normal. But the doctor noted his shoulder blades sticking out of his back. This is a condition called scapular winging. After the doctor pointed it out I was able to see just how bad it was. His shoulder blades stuck way out. Since Ashton had always been this way, we really never noticed the winging. The orthopedic doctor believed Ashton may be suffering from some sort of nerve or muscle disorder; both of which are out of his area of specialty. He said he would try to find a pediatric neurologist to refer Ashton to.

After a couple of weeks we finally got a call letting us know Ashton would have an appointment with a pediatric neurologist in Fargo. The only problem was the appointment wouldn’t be for about four months. Because of that the orthopedic specialist needed to fill out some sort of paperwork on their end and get Ashton’s case prioritized. After a couple weeks we had to meet the orthopedic doctor again. He informed us the pediatric neurologist he had originally referred us to was the wrong type of specialist and Ashton would not have an appointment in Fargo.

Once again the orthopedic specialist went about finding the right type of pediatric neurologist for Ashton. The doctor also noted this should be done by Ashton’s primary doctor. Since moving back to South Dakota some years ago our family has not had a primary physician. It never occurred to us this would be important. While the orthopedic doctor was working on getting a new referral I setup an appointment with a pediatrician I hoped would become the primary doctor for the two little boys. The doctor I met with ended up being a great doctor and as time went on became a great central point to make sure the medical records from various specialists all made it into Ashton’s file. He also helped us to understand what some specialists have said over the the last year. Oops. I’m getting off track… Back to Ashton’s story.

Finally in about November of 2017 Ashton had an appointment with a pediatric neurologist. We would have to bring Ashton to Gillette Children’s Hospital in St. Paul, MN. From November of 2017 to spring of 2018 we made many visits to St Paul for Ashton to be tested and meet with doctors. The neurologist believed Ashton may have some form of Muscular dystrophy or a neurological disorder. Ashton went through a series of genetic tests to rule out various neurological and muscular dystrophy related conditions. He also went through x-rays, CT scans, MRI’s and a host of other tests.

As time went on Ashton’s condition continued to deteriorate. By the end of the 2017 Ashton would miss a day of school every week or two. As we got into January and February of 2018 it became even worse. Ashton would be home from school one or two days a week. On these days Ashton would have extreme pain throughout his body. The worse of it would focus on his shoulders, knees, and sometimes his lower back. This would last for a day or two, and then suddenly he would be back to normal. It was during the middle of this time-period that Ashton first had to use a wheelchair, and it was for about a week. The poor kids knees hurt so bad he simply couldn’t walk. The doctors showed some exercises to help, and eventually he was walking again. Mentally Ashton was getting in rough condition at this time. He was tired of hurting for no apparent reason. And doctors appointments were weeks between each other to give time for various genetic tests to come back. The long periods of waiting for news from doctors really took its toll on Asthon.

When spring arrived we had our final appointment in St Paul. We actually met a different pediatric neurologist this time; our previous neurologist had unfortunately passed away earlier in the year. The current pediatric neurologist let us know all test results had come back and he said with full confidence that Ashton does not have muscular dystrophy. He believes Ashton is suffering from a type of hypermobility and that a referral to a closer hospital such as one in Sioux Falls would be possible. This was both great news and horrible news. On the one hand it was good to know Ashton doesn’t have MD or any of the other neurological conditions they tested for. But then we realized Ashton would be seemingly starting over with new doctors. The poor kid was not happy about starting over.

Time to pause this story for a short blurb about hypermobility. Here is part of what the Hypermobility Syndromes Association (HMSA) has to say abotu hypermobility:

What is hypermobility?

Hypermobility is the term used to describe the ability to move joints beyond the normal range of movement. Joint hypermobility is common in the general population. It may be present in just a few joints or it may be widespread. It is most common in childhood and adolescence, in females, and Asian and Afro-Caribbean races. It tends to lessen with age. In many people joint hypermobility is of no medical consequence and commonly does not give rise to symptoms. Hypermobility can even be considered an advantage, for example athletes, gymnasts, dancers and musicians might specifically be selected because of their extra range of movement.

For a small percentage of the population, instead of being advantageous, hypermobility may be associated with joint and ligament injuries, pain, fatigue and other symptoms. Hypermobility can also be a sign of a more serious underlying condition, which are often passed down through the generations. These conditions are known as Heritable Disorders of Connective Tissue (HDCT).

Ashton had always been flexible. That was part of why he enjoyed gymnastics so much. Actually during his diagnostic phase in St Paul his hypermobility had been noted. But at that time it was thought the hypermobility was a side-effect of muscular dystrophy.

At this point Ashton’s pediatrician was handling the referral. It took a while to find the right type of specialist for Ashton. Finally at the beginning of summer he had an appointment setup for September. We weren’t happy about waiting a few months. But we were told the Sanford Children’s Hospital in Sioux Falls was hiring a new genetic doctor specializing in cases such as Ashton. So we decided to wait it out and see how Ashton handled the summer.

The summer went pretty well for Ashton. He didn’t have to use the wheelchair at all. He still had one or two days each week he couldn’t move. But since we were home he would just hang out in his room. Ashton played midgets baseball. On the days he was having problems the coach would work with him and let him sit on the bench if he was too sore or his shoulder was dropped. There were a couple of game Ashton wasn’t happy with me or Mindy. When Ashton hurts really badly he doesn’t want to be around people at all, even if he can walk. One of the previous doctors said it was important to keep him social and make him go to school or sporting events, even if he couldn’t participate fully. So we did make him go to some games despite his protests. Overall though the summer went pretty well and we were almost thinking he was getting better. Then school began again.

Once school started again he was back to having one or two days a week where he had problems with his knees. Looking back, we don’t really think he was getting worse. It’s just that he didn’t have to move during the summer if he didn’t want to. School involves a lot of walking throughout the day. Instead of keeping him home every time, we were now sending him to school with a wheelchair on the really bad days. Since the beginning of this school year I would say he has had about five or six weeks where he went to school a day or two in a wheelchair.

Ashton’s appointment finally came in September. The only problem was it was set for the second day I would have my first round of chemo. At that time my breathing was so bad it was not possible for me to reschedule chemo; and we had waited so long for Ashton’s appointment we didn’t dare reschedule him. So Mindy took Ashton to Sioux Falls for his appointment while my brother-in-law sat through chemo with me. I really wish I could have gone to Ashton’s appointment. That is another thing cancer has taken from me…

The appointment with Ashton went well. Most of the time was spent by Mindy answering questions for the geneticist and going through his history. The doctors at the Sanford Children’s Castle believe they have a good idea of what type of hypermobility Ashton has. But just as the doctors at Gillette Children’s Hospital had noted, Ashton has some other symptoms that just don’t align with anything else. So he is also being tested for some other neurological condition which may or may not be related to hypermobility. His appointment with a neurologist at the Castle is actually coming up at the end of October.

Ashton also has an appointment with an occupational and physical therapist coming up. The doctors at the castle are covering multiple methods of diagnosing and helping Ashton with his pain. I really appreciate that.

I think two thousand words is enough for one post. In this post I shared a cliff note version of what has happened with Ashton over the last year (I could write a full book about everything that kid has gone through in such a short amount of time). Hopefully this post will help some family and friends of Ashton understand what he has been going through for the last year. I will post any major updates on this site to help keep people informed about his status.