7-26-16 - Update

As stressful as this adventure has been, it has been relaxing at times when Ian or other family members are visiting to allow us an escape. The biggest issues continue to be living out of a motel room and getting from point A to point B.
The Ronald Mcdonald House is only about 3 miles from OHSU. This seems like it would be a quick zip up the hill and be there in 5 minutes situation.... No... Pretty much everything in Portland takes nearly an hour to accomplish for whatever reason but mainly because of traffic and lack of knowing where we are and trying to listen to GPS constantly.

There have been lots of close calls and many U-Turns but we always seem to eventually find our way.
On Saturday, Ian was back in town so it gave us some time to go out and tour Portland for the first time. We went to Pioneer Courthouse Square which seems to be a central chillout spot for many locals and tourists alike. I enjoy playing footbag and Camille has loved Greenleaf Juicing Company (which is right across the street) to fulfill her nutritional needs as well as people watching. You pretty much get a taste of every walk of life just by hanging out for about an hours time.
On this occasion we were greeted a couple different times by 17-18 year old kids that were traveling from out of state and spreading the word. We told them why we were there and they immediately offered up kind words and thoughts for our daughter. It was very nice getting support from complete strangers.

I was again approached by another gentleman and he informed me that he wanted to interview me on what my thoughts were pertaining to Portland and it's level of "weird". Being that I lived in Seattle in the early 90's as well as Boise Idaho for 12 years, I have noticed that every city has a level of weird and Portland was no different. These days the most outlandish, strange or out of the ordinary is usually worthy of big points when it comes to shock factor so nothing is usually to off the wall to be surprising.
After the interview was over, he discussed a few things with his team (there were about 15 of them involved in this process). He proposed they would like to spin the story to discuss footbag instead. They then mic'ed me up once again and had me answer some more questions on the topic of footbag. It was very flattering they would consider it but after talking with me he said I inspired him on how much I loved the sport and he wanted to share my persepective. All of these kids were in the 18-25 range and were preparing for a coastal trip from Portland to San Fransisco where they would be traveling through North Bend. It was awesome to provide some sites of interest for them to check out along their way as well.

After about 15-20 minutes they were finished. We wrapped up by telling our story once more as to the reason for us being there. The next thing that happened made our day complete. Once they heard about Mayliegh and all the things we had gone through, they all immediately gathered around us and asked to pray for us. We told them it would be fine and it was an honor they would consider taking additional time to think of our daughter.
His heartfelt and kind words for Mayleigh were very emotional to say the least and the love that we felt from those 15 or so kids was exactly what we needed. We had just gotten the news that there were no cancer cells in her brain tissue and now this amazing experience that showered our daughter with loving thoughts from complete strangers continued to signify that things were going to work out for us. We were blessed to have been there at that exact moment in time and it was an experience neither of us will forget. They even had the interview ready before the weekend was over. They are teen newscasters trying to find interesting stories around the city and I couldn't be more proud of their achievements and care for humanity. They are definitely worth checking out~ www.htvbuzz.com. Feel free to check out the video too! Larry's Footbag Interivew

That evening we came back to enjoy the first of a series for the summer called "Flicks on the Bricks" and it allows everyone to come and relax and enjoy a free movie in the square. The movie was Big with Tom Hanks which was always a favorite of mine and we had a great time relaxing in the cool summers night. Bricks aren't the softest seats though so after nearly 2 hours of sitting it was nice to get off our tushes and move about. If you ever have a chance to be here when a movie is playing I would highly recommend taking advantage. It was well worth it. Just remember to bring a pillow or something comfy to sit on!

In the next couple of days we continued to have pockets of relaxing down time and one other thing we were able to enjoy was the new biking system called Biketown. This allows people to rent bikes for a one time ride, day pass or monthly fee and drop off or pick up a bike from many different locations throughout the city. It was a great experience to have and the bikes were very easy to operate. They even have an app to find out where you can drop off/pick up as well as add money to your account. We rode about 3 miles and for Camille and I, it was one of the first times riding in over 15 years. It is true what they say about bikes though and there were no crashes, bashes, or blunders to be had that night. We did have an unfortunate event in that I lost my wallet :( . I immediately jumped back on and re-rode the 3 miles in double time searching but came up empty handed. Guess I'll be visiting the DMV whenever we get back home. Thankfully I never carry cash so I just had to cancel our credit cards and hopefully everything else will work itself out. I'll make sure I zip it up tighter next time!

As we start to count down the days to getting Mayliegh out of here, we are continuing to stay positive and hopeful that she will be released on or around the 5th of August. This would be 30 days and complete the induction phase of her treatment. At that point she will do another bone marrow aspiration where we will then find out the effects internally. On the outside she is still looking much better and we are very happy with those results. With every ones thoughts and prayers and doctors positivity we can't help but be confident that they are going to say she has succeeded in remission, the cancer cells have dwindled to nothing and she will be released shortly after.

With all that has happened, we find ourselves astounded by how well she has reacted to the treatment and with little to no side effects. We honestly keep waiting for something to happen including losing her hair and still she seems as if the drugs they have given her have done very little to effect her (in a negative way). We would be a horrible benchmark for cancer treatment in that it is an absolute miracle she has made it over half way of this induction phase without any major issues. This is a childrens treatment regimine and it is very intense. This is one of the reasons we were told it needed to be done at OHSU. Additional treatments will be done in Eugene most likely. Coos Bay/North Bend does not have the facilities for this treatment unfortunately. This will include trips 4 times a week during the first 2 months and tapering for up to 2 1/2 years.

I again have to owe much of this success to the amazing staff at OHSU and the constant thoughts and prayers from loved ones and strangers. We are forever in debt to your gratitude and love and can't say it enough... Thank you for all you have done for our daughter and ourselves!
It continues to be mind boggling how out of the blue, people offer up their condolences and thoughts. We are a greater nation than what we see and hear about everyday. The stories and media that is being shoved down our throats is nothing but a facade compared to how many good deeds and acts of kindness actually exist. Peace sells but no one is buying was a popular saying at one time. I understand completely what that means these days and unfortunately the biggest seller is pain and suffering. Do not believe what you hear, just see the world for yourself. From my perspective, there are plenty of good willed, self-less, caring individuals that are more than happy to sacrifice their time and money to help someone in need. In some ways it's another blessing to have our daughter to focus on as the outside world is being painted in the most nasty and ugliest of ways.
Well I'm happy to say that love and kindness is curing our daughter and if more people shared in this phylosophy we would be able to achieve anything we put our minds to. We, at this moment need to focus on our daughter and what it will take to succeed our goal; and that is to beat cancer from whence it came. The only way to achieve this is to continue to think positive, connect with as many people as we can that share in this optimism and complete the goal by seeing remission as the only possible solution. We need your thoughts and prayers more than ever as we move into the last stages of induction where most patients find their energy levels and condition draining them of their strength and courage We are optimistic she will find this strength and courage through each and every person putting their thoughts, prayers and energy into her recovery. We feel the love, see the finish line and have complete confidence our goal will be achieved!~

Friday, July 22nd - Update

The days that have followed the ommya reservoir have gone by somewhat uneventful except for some major swelling in her eye and some great news we recieved today.
Initially they told us that the surgery would cause some eye swelling and that it would be normal but I did not expect her whole eye to close shut. It was quite dramatic.
By that evening the swelling was visible in her forehead. By the next morning gravity had pulled it over her right eye but you could still see her eye.  By the time I returned that evening it was completely swollen shut. :(

The day after her ommya surgery, she was to have her first chemo administered through it and her 4th different type of chemo. This one was called methotrexate and is more common when it comes to administering for other cancers and auto immune diseases. It is less harsh and has less side effects than the others so it made me feel somewhat at ease but knowing it was being adminstered right through the brain causes a little anxiety.
She again did amazing. She first needed to have some spinal fluid drawn so they took about 2 teapsoons of that. It's definitely a strange experience watching them draw fluids out of the top of someones head.

 It also resembled a watered down kool-aid of some sort.
After this fluid was drawn she was to get her chemo using the same needle. Or so we hoped...for the umpteenth time something happened to cause the doctor to have to poke her again, but we are getting used to her multiple attempts when it comes to needles. Either way she was able to do it smoothly and without issue and before we knew it she was done. At this point her eye wasn't completely swollen yet and everything looked good. She made it through one more obstacle and again we wouldn't have to worry about additional spinal taps.

In the 2 days that followed, the swelling has gone down dramatically and she only has one small red spot under the eye. I couldn't believe it went down that much over night but sure enough as fast as it presented itself, it was gone. :D

Today we spoke with the doctors around 10:30 am. They had asked her how she was feeling which was overall pretty good. She got a little light headed yesterday and nurses had to come in and assist but she was back to normal a couple hours later. They didn't seem to concerned and went into more details on her progress.
The first news that we recieved was unexpected and probably the best news I've heard in a long time. The preliminary biopsy results were back from the mystery stuff in between her brain and skull and IT'S NOT CANCEROUS!!! Hallalujuah!!! It wasn't 100 percent but 99.9 and we couldn't be more relieved knowing it was not in or around her brain.
The second thing they said was that she was progressing very well, in fact better than most and the side effects are almost non existent other than a ferocious appetite. The prednisone unfortunately is a double edged sword in that it reduces all the swelling and helps in killing the cancer cells but it increases apptetite, blood sugars and makes you feel jittery and tired at the same time. The benefits outweigh the downsides but it's hard to see her so hungry all the time. With no escape it makes it hard to keep your mind off eating, including ourselves. Her energy levels have been low as well so getting her to move has been a challenge.  Her blood sugars are reaching 300 at times but we are hoping it will only be temporary and the doctors have reassured us at her age it most likely will be.

After a day short of 2 weeks we couldn't be more pleased with how far she has come. We did not even have a diagnosis when admited but within this short time, to have her feeling so much better is beyond our expectations and we owe so much to our doctors, loved ones and friends that are carrying our daughter to remission! Thank you again for sharing in our journey and thinking of us at this time. Things could be so much worse for us and yet even during tragedy, we are seeing the positive aspects of it all. We owe all of that to the support and love from you all. And Ian is back so Mayleigh is having a fantastic day!!! YAHOO!!!

Thank you so much from all of us!!!! <3

Monday 7-18-16 - Ommaya Reservoir

Ommya Reservoir in; Now where's my din din :D

As we drove to Portland on Saturday, we couldn't help but think about all the positives we have in our life right now that are getting us through this obstacle. As big of a downer as cancer is, it could be so much worse and we unfortunately have seen many people either without family or for whatever reasons not doing as well as our daughter.
The first thing we were thankful for was Jon Davison and his family allowing us to stay in their condo as we still hadn't heard from the Ronald Mcdonald house. It was such a huge load off our minds and was within 4 miles of the hospital. I have always found it hard to ask for things and in this time of need I haven't had to due to so many people going out of their way to offer assistance. In this case Jon was able to offer us a place to stay when we had none. We are so grateful to them for giving us this gift!
The second thing we are thankful for is again to NBSD for their huge hearts and constant thoughts and prayers for our daughter. The support from them has been overwhelming and we are so blessed to have their army of support on our side. We are so blessed to have so many selfless, incredibly giving people in our lives!!! <3
Family support has been equally amazing and Mayleigh has had many visitors able to come see her in the past week. I know she really wanted to have an engagement party when Montana family was here but we will make up for that one in the near future.
And to all the people who have contributed to her Go Fund me: Your financial support has given them peace of mind for those future trips to Portland and moving forward with her treatment. With only one source of income due to her illness it couldn't be more appreciated as you can imagine. To know how hard people have worked to make that money then turn around and donate to our daughter is very humbling indeed and I know she and Ian are very grateful for your generosity, as are her parents!

Upon arriving Saturday, we were pleased to see the results of her predinsone had completely diminished all signs of gland swelling. Her parotid, lacramel and head nodules had all disappeared and her breathing issues seemed a thing of the past. Her thymus gland tumor had shrunk significantly and in some ways it seemed like she was locked up in a hotel room and not a hospital. She and Ian were buying time on their electronic devices and it was a day of relaxation for her from the normal daily duties. We were able to leave them to their last full day together before Ian had to return home and it was awesome to see the difference a week made since we had last seen her.

On Sunday Ian left about noon and it was definitely a sad day for her. She didn't feel like doing much and it was hard to try and cheer her up. I was really bummed cause all I could think about was If I was up there I would make sure she was happy and we would find something fun for us to do to take away the blues. I was not able to succeed, but I know the meaning behind the sadness and I knew it was a matter of time before she would bounce back. We finished the evening with a few laps around the 14th floor and the nurse checked her vitals one last time before leaving for the night. She had to be up at 5:30 to have sage wipes in preparation for her surgery the next morning. Her platelets were lower than the doctors would have liked so she had to have some added to her IV to increase blood clotting. One of the risks of an ommaya resevoir is bleeding so they wanted to not take any chances (Thank you for the millionth time OHSU for thinking of everything!)

We arrived at the Ronald Mcdonald house this time as we had gotten the call earlier that evening that we had a room. This would solidify living arrangements for the remainder of the time she is to be in the hospital so again we were blessed with perfect timing and amazing accommodations. The room is on the 5th floor of the Marriot Hotel and they pretty much give you all the amenities that a guest would have including dinners and access to a family room, play room and kitchen with many donated food items. This is such an amazing program for families and I can't imagine the total cost of what it would take to house someone for the time frame we are needing but I plan to make contributions form here forward as it truly is a blessing for us to have this opportunity. The stars aligned for us again to get in as the rooms are in very high demand.

Even though the room was perfect for our needs, the bed was comfy, the temp was on spot; I couldn't sleep for nothing. I had woken a couple times very panicky and woke up at 5:30 with a horrible nightmare about the procedure. All I can remember is this doctor holding this huge syringe saying "I put the needle in the right spot I thought...".
Needless to say I felt as if I had 2 hours of sleep; but upon waking up I felt refreshed, ready to go and confident things were going to go well.

We got to the hospital at 6:30 am anticipating her to be all ready to go. She was still sleeping. There is something that takes me back to her childhood as she lay curled in her bed. You just want to hug and squeeze them like they are 5 years old, but we also did not want to wake her as she looked as if she had finally gotten enough peace and quite to drift into oblivion.
The nurse informed us that she had to wake her up every 2 hours getting vitals and making sure the numbers were right in preparation for the surgery. They continue to be thorough in ever aspect and knowing they are thinking from every angle is reassurance beyond belief!

Things may have started off slowly but within 15 minutes she had a team of transport personal ready to wheel her down to pre-op. She has being so amazingly strong knowing they were about to cut her head open and I couldn't be more proud of how well she has held up. She has faced more in 3 months than I have in my whole life and the resolve she has shown is admirable to say the least.

Once in pre-op she was hit by 5 different people. First a nurse who got her hooked up to her new IV machine, then a couple anesthesiologists came in and discussed what she should expect from the surgery, then the doctor performing the procedure followed by a nurse that would be contacting us through the process as well as the head nurse that reiterated everything. Again, thorough does not do justice to the care she has received at OHSU.

We gave her huge lovins, assured her she was in great care and left her to her 2nd surgery in as many months. She most definitely did not deserve this to happen to her but she has taken it like a champ and with no complaints. They have told her some pretty horrific things that bring mom and I to tears and she's already processed and spewing questions back in regards to resolving the issues vs feeling sorry for herself. She is going to beat this and there is no alternatives!

We were told to expect an hour for the surgery and they have a nice little system in the surgery waiting room that shows the patients ID number and their progress. For her she began in Pre-Op and then was moved to In Room as they wheeled her to the operating room. For the next hour things were out of our control and our hopes were high that things would go well. We received a call about a half hour later and I anticipated them telling me it was over but he said they had just gotten her sedated and asleep and that within 15-30 minutes they would hopefully be done. After 40 minutes the surgeon came out and informed us that it went very well and as perfect as they could have anticipated. We were overjoyed! Knowing they were sticking a straw in her brain (in lamens terms) we couldn't help but be nervous but again I felt very comfortable after visiting with her team. They really know how to set your mind at ease.

Within another hour she was already back to her room and coming out of it nicely. She really enjoyed the pain meds they gave her compared to her first surgery and was in la la land with no pain :D
Within the next hour we were able to get her some food and she seemed very content and we couldn't be happier!

This journey is nothing as I expected it to be. Her cancer has not defined her nor given her any doubts as to where she will be with her life regardless of how grim the results have been. She continues to be confident, resilient and stronger than I could ever have imagined. She is my baby girl and my courageous, grown woman all wrapped in one. I envy her strength and will never be able to express how monumental her resolve has been to me but I do know she has surpassed my expectations of bravery and I am probably the proudest dad on the planet for being blessed with such an amazing daughter. She has had the perfect mentor in her mother so it makes sense that she is one tuff cookie!
Now get some rest; and may your dreams be as sweet as you are <3

Thank you Ian!

One person that deserves a huge thank you for being their for our daughter is Juvenal Lara (Ian), Mayleigh's fiance.
Ian and Mayleigh began dating in the summer of 2014 shortly after her graduation. It took a while before we could ever meet him, but I would lure him over with my smoked meats which he seemed to really enjoy.

Mayleigh and Ian got engaged on June 21st, the day before her biopsy in Eugene. I'll never forget it only for the fact that I thought I was going to have a heart attack after hearing the emotion in my wife's voice. I was in the living room and I hear her answer and immediately let out an emotional half cry "OH MY GOD!!!". I think I took 2 steps as I flew into the kitchen to see what was the matter. With Mayleigh's increased breathing issues and overall not doing so well I immediately envisioned the worst. She quickly let me know that Ian proposed to Mayleigh at the beach...
After the adrenaline wore off I quickly became relieved that she was ok but also extremely happy for her as she sounded on cloud nine. She didn't have allot to be excited about with all the poking, prodding and now biopsy on the horizon and it was awesome to see and hear the excitement in her voice.

Ever since Mayleigh has been with Ian, he has provided love and support beyond anything we could ever have asked for. I think most parents have visions of what their child's husband/wife will be like and at the top of my list has always been someone that cares for her, loves her unconditionally and treats her right without mental or physical abuse in any way. Ian has done this for her in every way possible and for that I am so thankful to him. He is a man of few words but I can tell in his actions and his care for Mayleigh that he truly loves her and is doing the best he can to help in any way.
Ian has been with her since we left last week which has enabled us to take care of our priorities but he unfortunately will have to do the same on Sunday. She will still have 2 weeks minimum staying in the hospital but he must go back to work for a time before he is able to come up again.

We just wanted to say thank you Ian, for all you do. You have exceeded our expectations for caring for our daughter and we welcome you into the family with open arms. This experience can only strengthen the relationship between all of us and I look forward to getting to know you better through the years. Please know that we are there for you as much as we are for our own daughter and don't hesitate to ask us for anything. Your parents should be proud knowing they raised a young man as giving as yourself and Mayleigh is lucky to have you in her life!

Share the Love

Being that it's summer time, I don't get to see allot of people but I have ran into a couple that I just wanted to mention or recognize and hopefully people can add them to prayer chains and spend a moment thinking about them as well. So many people do great things in our district and we hardly think about it as it's their job. But unspoken appreciation happens daily in a school environment and even though it's not said enough, everyone is important!


Mary Ellen Blake was a secretary for the Lighthouse School and she recently passed away very suddenly. I remember in March she had a sub come in for her and it became permanent. I remember asking where she was as it had been a while and it was not known as she was keeping it private. Unfortunately she has fell victim to cancer and within 3 months she is no longer with us. I just wanted to say that she was a fantastic lady that was always complimentary and appreciative of my work and I will always remember her. I am happy to have had her in my life and I will miss her greatly. Thank you for all you did for us Mary Ellen! You are loved!!!

Another person that is hurting badly right now is Kathy Bailey. Kathy is a custodian at the middle school and has had her own bouts with health issues in recent years. She has overcome them but still not 100 percent but the real issue right now is her family. I don't know how she can even work but at this time her mother is having heart issues, her dad is fighting for his life and her sister is also having to battle for her health. I am having a hard time with my daughter let alone 2 other people close to me at the same time. I can't imagine how she is feeling knowing that the support system that would normally be there for her are the same people struggling to survive. Kathy Bailey could use all the strength you could give her and I would greatly appreciate thoughts and prayers for her family as well. I appreciate you Kathy and enjoy speaking with you when possible. You do not deserve this pain and I pray your families health will return and you are able to have peace again! <3

One more person in the district needing some prayers is another custodian Tim Reynolds. Tim has recently been informed he has cancer as well. He continues to work which again I find it amazing he is doing but hopefully he is able to get in and start his treatment very soon. We are thinking of you Tim and I hope you know you can beat this and get your life back on track!!!

Thank you for your thoughts. As you can see, cancer is becoming an epidemic. I don't consider myself knowing allot of people but it seems that everyone I know is struggling with cancer either within their family or through friends. We all know someone with some kind of cancer and the only common denominators I've come up with is food and water. Regardless of what it is, I hope that everyone is able to tell their loved ones that they are in their thoughts cause it's definitely helping us get through this just knowing people care about you. It means the world to us as parents to have that support. Thank you again for everything!!!

Thursday 7/14/16 - Mayeigh update

I remember playing footbag back in the very beginning when Mayleigh's issues started to popup and Simmie Muth, a teacher at North Bend High School, was walking past.
We exchanged hello's and made small talk and for whatever reason I chose at that moment to speak with her about Mayleigh. I don't have allot of friends locally to confide in other than the wife and co-workers and Simmie has always been a great listener as well as a past teacher of Mayleigh's.
I told her I was getting worried about her and kind of unloaded.  I later apologized for doing so but it really felt good to get it out and to tell someone. It was weighing heavy on my mind and I was grateful she happened to be there that day. Just like now it feels good to write about it even if no one ever reads it. Simmie immediately offered up her concerns and that she and her family would pray for her. It also felt good to know that someone was thinking of our daughter.

Today was for the first time not a good day for Mayleigh. I waited longer than normal to text to allow her to sleep in and hopefully get some good rest. I am trying to stay as positive as possible but it seems logical that if there if there is a nuclear bomb going off inside of you then eventually your going to well...feel like crap. That was today.

She started the day off with nausea. She really wanted to just take a bath or sit in the hot tub but all they have are showers. She has been on blood thinners to avoid blood clots and coupled with the hot water and standing up, she about passed out. She had to use the nurse call and soon after everyone came running in. They immediately hooked her up to some heart testing equipment and tested her blood pressure which was extremely low. She said it took her a while to really tell what was going on but eventually she came back to.

They said it was cause of the vegas nerve and that it is somewhat common during chemo and that they would watch it but they weren't to concerned. She was also in need of some platelets so she will need to get some of those in her IV as well. Overall what seemed like something that would of had us scared out of our witts seemed not to big a deal to call mom and dad over so we didn't find out till later. She was able to walk a couple laps around the wing as well so it's good to know she was able to move around even after.

She also had some bad heartburn this evening so I'm thinking she's finally feeling the chemo blues. I hate that she has to go through this part but I'm just praying her white and red blood cell counts stay healthy enough to do another chemo round on Saturday. Her body needs to recover before nuking again and if it doesn't recover then fatigue and feeling horrible sets in. Something that I again pray does not happen.

After one week though we have to consider ourselves blessed for having such little complications and overall discomfort. It's also good to know that if anything happens she has a team of nurses on her immediately getting top notch care. It's things like this though that make me want to drive up now. It's definitely nerve wracking being so far away. We will see her very shortly though and keep the thoughts and prayers coming. The next few weeks are going to be testy to say the least!

My Heroes!

When we moved here 10 years ago, Mayleigh was nearing the end of 4th grade. Ironically, I moved from the Oregon Coast (Brookings) when I was in the 4th grade as well. Granted I went from the beautiful Oregon Coast to Coeur d'Alene Idaho and not the other way around. I eventually ended up on Eastern Montana in a tiny town called Shepherd. That year we went to 4 different schools before finishing up on the west end of Billings. It was quite the change from the green, scenic ocean views of Oregon and I would always dream of the day when I could move back.

At the time, I remember my mom asking us, "what do you think about moving to Idaho?".  As a kid, I guess you don't really process future events or friendships not coming with you cause I was like "lets do it!". We asked my daughter the same thing and she also said yes. She had been to Brookings and Coos Bay just a couple years prior as we did a family trip to the coast when I was still painting.  We originally loved the bay area and wanted to move then but painting in Oregon did not seem to be steady work so we threw it in the pile of dreams and went about life.
On a whim, I happened to be looking for jobs in the Coos Bay area after trading professions. I needed benefits badly due to the wife being a type 1 diabetic and I desperately needed to get out of the construction business. Painting in a fast pace, booming city was not fun in the slightest and after 14 years I needed a change. So I turned in my whites for blues and became a cable guy. That's right... Larry the Cable Guy.
At first I just dug the trenches for cable to be place in. I excelled at shoveling and ended up becoming a tech after a month. Within 2 months I was tech of the quarter and they were wanting me to become a lead. I really loved the cable biz and I seemed to have a knack with the customers. Especially when I would fix their computer issues at the same time and go above and beyond what I probably should of done, but I was always wanting to help the customer. And going from painting where everyone hates you for stinking the place up and getting paint everywhere to "sweet the cable dude is here!" it was pretty awesome. I loved Cableone as well. They were a great company and it was hard to leave such a great job and especially since I was moving up the ranks so quickly.... But I had a dream to tend to.

in Coos Bay, Charter was hiring (shocker) and were willing to pay $2.00 more an hour than I was already making with the chance to bump up again after taking a couple more tests. It seemed like a no brainer. The wife and I talked about it, then we talked to Mayleigh. We all seemed in agreeance that this was something we wanted to do and before we knew it we were flying out to look for places. On the 4th house we struck gold, fell in love and within another week we sold our house and were in debt up to our ears... But we were living the dream!!!

It wasn't long after that I found that working for such a large corporation, you really are just a peon of the system and in the big scheme of things, no matter how many customers were satisfied; there really was no satisfying the company. They always demanded more and with a whole new structure of how things were ran it was again time to move on. I wanted so badly to get out and I went from loving cable to almost despising it towards the end. I needed a new job in the worst way but the only other solutions were satellite install with long days of driving... Not my cup of tea.

My wife saw an add for a computer tech at ESD and from the second she read it, both of us said "THAT'S ME!". It felt like the job description was meant only for me. I was ecstatic! I rapidly filled out the app and did all the necessary things to apply. I then waited.... and waited...and waited.
Finally I got the phone call for an interview. I was nervous as all get out. I had no official experience doing computer work. I was self taught, I only fixed friends and families computers and built a couple websites. I remember hand writing allot of my skills on the front and back of the application trying desperately to impress with my lack of credentials and any formal education past 12th grade.

I remember Joe Burkleo and Joe Frischman grilling me on some things I could answer and some I could not. Allot of questions revolved around Novell and I just didn't have the knowledge of that product so I was getting very concerned I wasn't going to fulfill their need. I was right. They called me up and told me I didn't get the job but they thanked me and she even said they really liked me but someone else just hit it out of the park.
I was bummed. But everything happens for a reason and so I figured if  I'm meant to be a cable guy then so be it. Get 'R Done!

A week later the wife and I went out crabbing on our death trap of a boat and I got a phone call. It was ESD calling asking if I was still interested in the job. I about dropped my phone in the ocean but with a death grip I said "YES!!!" . For whatever reason the previous person didn't work out and I was their next choice. I could not believe it. I was going to be changing professions again and I had no clue what to expect.
I remember my first job was to figure out why Accelerated Reader wouldn't work on the network. I had no clue what Accelerated Reader was but I knew how to research and i went to work trying to find out the requirements. Before long I realized it was a rights issue and I had it up and going within the next day. I continued to my next issues at hand and was able to resolve those as well. I soon found that I was able to resolve most problems fairly quickly and I was loving it.
You get a sense of what a superhero feels like in a way when you solve problems for people that are aggravating them. And it's an amazing feeling knowing you either saved their day or made their lives a little easier by resolving the issue.
I found zen...I lived on the coast, I loved my job, my wife, my kid.. What more could I ever want? Dreams do come true!!!

After 4 years of working for ESD I was told that North Bend was cutting ties and that my contract was not going to be renewed. Dreams do die.. :(  Even though they were happy with my work and I did everything that was asked of me; they were not going to re-hire me...
Once word got out that I wasn't going to be hired, staff members and students both started a petition to have me re-hired as a North Bend employee. There were hundreds of signatures but as of June 30th, 2011 I was no longer employeed and I had to file for un-employment.

I spent some of the summer in Montana where I foolishly thought I could spend 3 weeks without the wife and kid. I've never spent that long without either of them and I spent the majority of the time more home sick than anything. In the meantime my brother Chris was just getting out of the hospital with pneumonia and my sister Lindsey was just going in. She ended up getting extremely sick and spent almost the whole time I was there in the hospital. Chris on the other hand ended up not getting any better and in fact had his own mystery diagnosis issues for about 6 months before they found out he had polymyositis a rare auto immune disease that affects the muscles. He has actually been a good resource for Mayleigh as he went through almost the same exact things. High doses of prednisone and chemo. Unfortunately like my wife, he also will live with this the rest of his life and need treatments regularly.

After enduring what seemed like an eternity away from the fam, I came back home to an interview. It seemed that all the petitions had earned me the chance to apply for the job I had been doing the past 4 years. I felt confident I had what it took... I was right. :D

In September of 2011, I officially became a North Bend School District employee and in the process had one of the most profound moments of my life... and probably one of the best days of my life outside the birth of our daughter and marrying my best friend.
During the in-service they always announce new employees. I really wasn't expecting to be announced as I wasn't really a "new" employee but I was in that ESD was no longer my employer. They were going down the list and they get to the technology department. My name was announced and I stood up and did a little wave and sat my shy butt back down as quickly as I could. The applause continued. Just as I thought it was about to end it got louder. Then some people began to stand up and even more cheers some whistles (easy ladies, I'm married! j/k :P). I began to turn extremely red I'm sure and I was fighting back the tears with everything I had. It will be a moment I will never forget and I know for the people that were there, they most likely would not either. In so many ways it was a victory for everyone and I just happened to be right in the middle of it.

When you have that much love hitting you from every angle; I can't even explain what that felt like. To be blessed to work in this district and have people that care about me in the way these people do....?? It's Priceless!!! I have no words... I have never been so humbled in my life and now it is coming full circle again. The love that the people have been showing our family is tear jerking to say the least. I truly had no idea that we would have received the support we have and I can never repay them for it. Well, maybe with free computer services for life! lol.

District Love & Support

They have put so much energy into our family at a time they should be relaxing and vacationing and yet they call, text and email their thoughts, concerns and prayers for our daughter. I have said it allot lately but we are truly, truly blessed to be right here in North Bend Oregon working for North Bend School District with the best people you could ever imagine. With all the appreciation we could possibly muster, we thank you NBSD! YOU ARE OUR HEROES, EACH AND EVERY ONE OF YOU!!! <3<3<3<3<3

Mayleigh's status 7/13/16 - An ode to cancer

I was able to finally talk to the doctor about Mayleigh's condition and there are silver linings everywhere. :D

First of all he told me the results of the spinal tap found that there was no leukemia cells in the spinal fluid! HALLELUJAH!!! At first we were told by Dr. Medvedova that they did find it in the spinal fluid and around the brain but then Dr. Dao came in and said don't get ahead of ourselves we don't know till the spinal tap is read; so this is a true blessing! But.... There was a thin layer of unknown cells or fluid surrounding her brain that they do not know what it is. So next Monday they are going to install an Ommya Reservoir so that they can administer chemo through it just like her port-a-cath in her chest. This way they do not have to continuously do painful, anxiety filled spinal taps. YAH! :D.

This procedure at first glance looks very scary but there are two things we will resolve in this one process and that is eliminate constant risk of infection through spinal taps and get a sample of the mystery meat in her knoggin. (so to speak). Regardless of what they find in that fluid, they would still treat the spinal fluid and central nervous system with chemo as prevention as leukemia likes to hid everywhere. She already had her first does during the original spinal tap and bone marrow aspiration so she's already had at least one dose of protection.

We also talked about her overall status at day 4/5 since her first dose of chemo and 6th day of prednisone and he feels she is doing very well and happy with her progress. Not only has her swelling almost completely been eliminated, her breathing is better and her chest tumor has also gone down significantly. In fact he said that if she continues on this path and the stuff on the brain is not leukemia cells, she may be able to go home in as early as 2 weeks!!!

I am ecstatic over everything he was telling me and I am blown away with her progress. We have been truly blessed so far and I owe it all to the people taking their time and praying or just sending positive energy her way. I really feel there is no other explanation for her condition to almost completely diminish the way it has. He has reassured me that within the next week or 2 though there could be some rough road ahead and fatigue but that so far her blood counts look good, WBC doing good, platelets etc.. The only thing they are having to do now is give her a long acting insulin cause her blood sugar levels have been reaching the mid 200's but as a temporary issue; it will not be a problem long term if things stay on this path. She also has to have a painful blood thinner shot for 7 days to avoid clots with the peg asparaginase.

Our ode to cancer!

By August 5th she will be off prednisone, hopefully in remission and on her way home. I cannot thank everyone again for their support! She doesn't even feel like herself cause she feels so much better. If all goes well the rest of the week we may leave Saturday morning to give her and Ian more time together as he will have to leave on Sunday. I'm sure they have enjoyed having a whole week to themselves after being ripped apart with only an hour to spend together before going to OHSU but mom and dad are dying to see their baby girl!!! <3

Everything Happens For a Reason

Over the past year, I've had a couple set backs, just like anyone, but one of them was devastating for me and I just couldn't understand the good in it.

For the past 3 years I was the head wrestling coach at North Bend High School in North Bend Oregon. I loved it... I wanted it.. I was lucky to do it! I was a volunteer for 3 years prior to getting the job and I dreamed of the day I would get the shot. I did everything I could to be a good coach and I loved having the kids over for pulled pork or ribs, taking them to a college tournament, feeding them after they were starving.. whatever I could do to get them interested in wrestling... You know.. EAT!
It was awesome to be part of a family like that and have a chance to inspire kids.
Being a tech guy I border probably on the edge of the most hated guy at the school at times. Not that I have complete control over what happens on our network but I can create blocks and limitations to "fun" and unfortunately there is some backlash. Fortunately, most kids are pretty cool and understand it's for their own protection but you occasionally have to shut down some access to "fun" and therefore your stock in cool guy goes down.. And a tech guy can use all the cool guy help he can get :D
Point being, it's very hard to bond with kids in my line of work. I mostly converse with the teachers and spend very little time with students. I try to work quickly and incognito if possible in order to slip in and slip out without interrupting their teachings. I'll also admit I have some stage fright so when the door opens and every kid looks up to stair judging'ly at you, all you can think is "please God.. let me zipper be in the upright position!".
There is a point to this.... I found my way to bond with the kids was through coaching and the feeling it gave me was amazing! I thought several times I could be playing footbag with them but I've found that no one is very interested in juggling a ball on your foot. Especially if you have to practice hours upon hours to get good at it. And no one else is gonna be there to hold your hand. I have seen it become quite a social experiment but it's not the same and you have to be somewhat dedicated and truly enjoy it just like anything to get really good at it.
So wrestling was something I was not only good at, but it brought back great memories of my childhood and it was a school sport, which it was not when I was in high school. I was still in good enough shape too to be able to show some skills and I was hooked all over again.

Coach Gary Prince had taken the job after no one else wanted it. He had little to no experience with wrestling but he has exactly what it takes to be a good coach and that is his desire to see them succeed. He brought in the numbers, turned the program around and won a District Championship back when it was harder to do than it is now. He has now moved on and has been extremely successful on the gridiron taking North Bend to 2 state Championship games, 2 semifinal appearances, and 2 quarter-final appearances in 6 years as head coach (I think that's right).. Anyway, he's been doing awesome and I'm so happy for his success.

Coach Prince showed me that most of coaching was passion. And if you had enough passion, the kids were gonna see that and buy in and next thing you know you got everyone wanting to wrestle. WRONG!
That first year was an eye opener. I got new equipment, tried doing pre-season practices, came in for freestyle/greco, weight lifting... You name it I was trying it. And I got a whopping 9 kids to come out ending the season with 7. For 2 duals I had 4 kids that could wrestle. It was rough... I want to be the best in everything I do and it was a really tough pill to swallow getting killed due to lack of a team. I swore I would work harder and learn from my mistakes and the next year we doubled in size. By my 3rd year we had tripled and were on the right track again. I even had almost 10 kids on a regular basis coming out for pre-season practices. I couldn't be happier! Who wants to work in the summer? 10 tough kids.. that's who!

Towards the end of July I was told that there was something the Admin needed to talk to me about. Naturally I was puzzled and concerned. I had no idea that what they were about to tell me and I tried thinking; did I push a kid to hard? or didn't give them enough water breaks?.. I was clueless.
I was told that a new interpretation of the law has been shown to them and that they were not in compliance at the moment. And to become compliant, they may possibly have to let me go as a coach due to me making an hourly wage. Not only an hourly wage but a higher than average hourly wage coupled with a ridiculous amount of hours due to multi day tournaments and sleeping overnight etc. Wrestling's structure just demands full days there is no way around it. And due to a high rate of pay and a high rate of hours, this was going to force them to have to pay me overtime if I went over a certain amount of hours.  We didn't realize they would have to pay me for sleep time as well (even though I can't supervise with my eyes closed).

Originally I was like "well, it's been a great opportunity and keep in touch. Let me know what's going on and hopefully it will change". It did change but not in my favor. I was forced to resign from something I was truly passionate about. It was one of the hardest things I ever had to do and at the time I was very bitter, pissed off, angry, you name it I was it.. I'm sure I over complained and threw some fits but to lose something like that over a stipulation, and over money... Something I didn't sign up for in the first place it just happens to go with the job. Nobody coaches to make money, at least the coaches I know aren't. This would mean all classified employees would not be able to coach and to this day we still aren't able to coach.  write your congressman and tell them to change the law!

Ok ok.. the point.. I know.. I'm getting to it. The point is that at the time I thought this just sucks and now what am I gonna do with my time??? Well, I found something to do and that was to start enjoying life with my wife and we hit the road and started going camping. We've camped all up and down the coast and even Northern California a few times and my passion has been renewed. We even have another trip already in the books in mid September. We are hoping our daughter is in full remission and her and her fiance are able to come with us to Jedidiah State Park in CA.
The other great thing about not coaching at this time is I can now focus 100% of my energy on getting my daughter well. If I was coaching it would be near impossible to split my time in that way and therefore I am thankful I am not in that position. At  the time, and I probably even said it, "why is this happening to me". Well now I know. And it goes with everything I've tried to tell myself all along and how I mostly try to live my life and that is everything happens for a reason~

My daughter is having the fight of her life. I hate it with every ounce of my being. But I have to think that it's for a good reason whether I want to believe it or not. I know there is a purpose and I know that one of those reasons is for us to be closer and for that I am extremely grateful.
My daughter and I used to be gaming buddies and play World of Warcraft and Battlefield all the time. It was our thing. But as time went on and games became a thing of the past it was hard to find that thing we could bond over and for whatever reason we just didn't find that connection.
Through this process though, I feel we've been able to talk allot more and really get to know each other a bit better and I find I am loving being able to help her, in fact I'm craving it right now! I want to get up there and help her in any way I can. Especially when she truly wants my help.
I think most teenagers find they can do it on their own and so your not needed as a parent anymore. Right now we ARE needed and for good reason yes, but I truly feel she has seen our lectures and speeches were actually lessons all along...and out of love and not "cause we said so"...and to see that corner being turned is a very powerful feeling. I am thankful to cancer for bringing us together. But I'm more thankful to be together as we beat cancer! We love you Sweetiepie.. BUNCHES AND BUNCHES AND BUNCHES!!!!<3

The journey begins - Part 1

Mayleigh Kyndall Workman was born on December 14th 1995. From the very beginning, Mayleigh has been one of the sweetest, kindest most beautiful souls I have ever met. I am not just saying that because she is my daughter but because she has always gone out of her way to make others feel good about themselves and offer the shirt off her back as if she only had one to give.

Mayleigh graduated from North Bend High School in 2014 and began college courses at SOCC in Coos Bay Oregon. After a year she realized it wasn't her cup of tea and joined the work force along with her fiance.

In mid April, Mayleigh began working at Safeway as a cake decorator but within a short time she began having symptoms of difficulty breathing and some swelling in her cheeks. On April 18th, she went to the walk in clinic where they gave her some prednisone to reduce the swelling but it didn't seem to do anything. They also did some blood work. On April 26th she then went back to the walk in clinic in which they did an ultrasound and more blood work. After waiting a week for results they said she was normal and that they couldn't find anything wrong with her.

After another week of waiting the swelling continued. She also started experiencing swelling on the pallet of her mouth and a noticeable lesion that made us encourage her to visit the dentist. Mom had dental issues at a time that presented similar symptoms so it was worth a shot to have it inspected.

In the first week of May, she then went to South Coast Family Dentistry where they pretty much blew her off and said that her teeth looked fine and there wasn't anything they could do. No x-ray was done and he told her it was either a salivary gland or blood vessel and not to worry about it.

May 13th: After this experience my wife took the reins and began getting her an appointment with another dentist who had better equipment and willing to do a CT scan in clinic. (Dr. O'brien: whom is an outstanding person as well as dentist and we can't thank him enough for getting the ball rolling for us.) At this time she had noticed increased swelling in the parotid, a marble sized lump in her cheek as well as some nodules forming on the top of her head. They were red and sore looking and did not make sense to us nor to Dr. O'brien. The dentist saw her condition and was immediately concerned. More so than anyone she had seen so far.  This test result was enough to prompt the doctor to  get her into an ENT immediately and she was sent to NBMC to see Dr. Shimotakahara that same day.

On our first visit with Shimotakahara, he gave her a fine needle aspiration biopsy in her swollen parotid glands, more blood work, a hemoglobin A1C to rule out diabetes as well as some other tests to rule out other autoimmune diseases. At this time, both glands were swollen beyond anything I had ever seen and was noticeable to everyone. We would have to wait a week for the results which came back inconclusive.

May 19th: He then did a core needle biopsy in which he inserted a very large needle into her cheeks and proceeded to stick her 4 times before giving up to get another needle. After 45 minutes of waiting for him to return, he came back with the same type of needle and said he would just have to use it. He then snipped her another 4 or 5 more times until he finally was able to get a sample. This was aggravating to say the least and we were beginning to lose patients with him. Not only did he seem to not know how to do this procedure, but his bed side manners were horrible. Mom and I as well as fiance were all on pins and needles waiting for the fine needle results, praying it wasn't cancer, and he just turned his back to us as he walked in and when asked he just said "it was inconclusive" and that he would "have to do a different biopsy". I'm sure he's been in these scenarios before but it was unbelievable that he would be so inconsiderate considering we all were fearing the worst; and there was no assurance that it wasn't the C word. Dr. Shimo has done many great things for many people and I do not hold any ill will towards him but we definitely didn't get warm fuzzies from his communication and we were getting nowhere fast. We were all in agreeance that it was time to move on and get a new set of eyes on this.

After this experience we were told to wait another week and we thought it was time to find another solution and so our PC doctor told us we should visit Dr. Hurbis (another ENT). On May 24th, my wife and daughter visited him for the first time where he did a ton more blood work. He also looked down her airway as she continued to have difficulty breathing and he assured her that her windpipe was clear. He would have us wait to be seen again where he would then have the results of the blood tests and hopefully more answers.

June 2nd: After waiting another week for all these results, the biopsy Shimotakahara did came back again inconclusive and all the new blood work showed was an elevated Microglobulin level 2 which is a tumor marker. It was only slightly elevated but it was enough to throw him into confusion. He mentioned possible multiple myeloma, which came to a shock to us as we had all along started to believe it was not cancer. This would prove contradictory and we were immediately given our first scare that it may be worse than anticipated. My wife mentioned another round of prednisone as a possible solution for her as her breathing was getting extremely bad and her voice had begun to change due to the pressure on her windpipe. He agreed and started a taper does from 40mg to 10mg over a 10 day period. Little did we know what was actually causing this breathing issue would be bigger than we would ever imagine...

Dr. Hurbis attempted to get us an appointment with another ENT at OHSU and we were scheduled for June  14th which was a much longer wait than we wanted to have but thankfully he admitted he was stumped and wanted to put it into the hands of people who see these kinds of things on a more frequent basis. We were very thankful for his honesty and his willing to get things moving faster for us.

While waiting for the appointment, the prednisone started doing it's wonders and her swelling began to diminish everywhere. Her head nodules began to drop back down, her swollen parotid glands went way down and she was able to breathe allot better. This was very encouraging being that tumors would not normally shrink from prednisone, (so we thought) so it reassured us that it most likely was just inflammation. This gave us relief though since we still had over a week to wait for her OHSU appointment.

In the meantime, we had scheduled her for an appointment with our PC doctor as she didn't currently have one. This appointment was scheduled for June 10th (graduation day for NBHS).
Mayleigh went in and was immediately given for the first time a physical exam where he had her lay down and he simply used his hands to feel different parts of her body outside of the head region where all the issues were. He  was feeling around her lower abdomen area when he felt a mass that was very concerning to him. He immediately told her to go to Bay Area Hospital to get a CT done of her chest and lower region.

At 6:30 pm on June 10th, we were  informed by our PC doctor that he was 90 percent sure she had lymphoma. His wife had battled and beat lymphoma twice and we were encouraged that it can be defeated and that they were going to try and get us into a doctor in Eugene to do a biopsy of the thymus gland where a  tumor resided that was the culprit of all her breathing issues. The thymus rests above the heart and due to the size it had began putting pressure on her trachea. This would be a risky procedure and therefore they wanted a neurovascular doctor to do the procedure and  someone they knew could do the job right. She also showed signs of tumors in her lower abdomen as well as her armpit.

Since we knew the results were pointing to lymphoma and they had scheduled the biopsy for the following Wednesday (June 15th), we cancelled with the ENT at OHSU for Tuesday (14th) since we new our ultimate goal was to now see an oncologist. This would come back to haunt us as we were so close to being where we needed to be; but little did we know things would continue to unravel for us.

The Journey Begins - Part 2

In order to get the biopsy done, our PC doctor wanted one of the best guys he knew to do the job. Unfortunately he was on vacation and wouldn't return till the 20th and he wanted to review the case more so the biopsy date was set for June 22nd. This meant we had to wait 10 days until we were able to get in with him after being informed she had Lymphoma. This waiting game was getting extremely old and the only thing making us feel at ease was the comfort she was getting from the prednisone and the reassurance from our PC doc that these things took time and that she wasn't in any immediate danger. The relief would begin to fade though as she tapered to 10mg of prednisone from 40mg initially and her swelling began to reappear and in more places. Her lacrimal gland in her right eye began to protrude badly and her breathing began to worsen again. the 22nd could not get here fast enough!

On June 22nd we drove to Eugene where we would meet one of the nicest doctors yet: Mr. Joe Verimontes at Mckenzie Willamette Hospital. This man took time out of his vacation to look over her records from our PC doctor as they were good friends. We definitely see the benefits of knowing the right people that's for sure. We were told that not only was he a family man but he was one of the best at neurovascular procedures as she was scheduled to have a piece of the thymus gland removed which is a very tricky procedure. We were needless to say scared out of our wits. Especially since we were getting nowhere for so long and now were told she most likely had cancer.

Dr. V had asked Mayleigh a question right before the surgery and pointed to the nodules on her head. He inspected them and didn't hesitate to say he could just take a biopsy of those instead of going into her chest cavity which gave us instant relief  as he said it would be way easier to do. We said Let's do it and she would undergo her first general anesthesia and surgery procedure. She was scared.... we were scared.. but hopeful! She did amazing :)

After an hour, he was done. Not only did he do a great job with the biopsy, he also installed a port-a-cath to allow for easy administering of different medications and blood draws. This would prove to be very handy moving forward as it was already done and anyone needing access could do so immediately.
He sat us down and talked about several things and he was so kind and sympathetic. I think he was one of the most caring doctors I've ever met. He made us feel that they would find the answers quickly, they got what they needed and hopefully resolution would find us. Unfortunately it probably wouldn't be until the following week.  He also mentioned that he would  be looking at the University if anything due to the problems we had with finding resolution as they were best equipped. We thanked him and after another hour or so Mayleigh was able to go home and was shoe shopping shortly after. She seemed to have not only braved through this difficult procedure but she was stronger than I ever imagined she could be and we were so proud of how quickly she bounced back.

We were told that we may receive the biopsy results by Friday but most likely the following week. It was no surprise when we did not receive a phone call on Friday :(...
On Monday June 27th, our PC doctor called Mayleigh and informed her of the results. T-Cell Lymphoma. Being that he doesn't work on Monday's he didn't give her much more info than that and that he would be in touch. We immediately began researching what that meant and we were really given nothing more than a scare cause this is an extremely rare disease in that only about 5000 people suffer from this each year. But then there are 20 different sub-types that get even more rare. All we knew is that it was fast moving and at this rate we had no idea how far along we were in staging. We dreaded the worst but remained optimistic.

On Tuesday June 28th, Mayleigh received a call from an oncologist office in Eugene at Willamette Valley Cancer Institute. She told her she had an appointment on Friday the 30th but we had been planning a trip to Boise Idaho for many months now. We of course would cancel and go to the appointment but she informed her of the conflict and was told she would call back if she could find an alternative date.

Shortly after my wife receives a phone call from our PC doctor kind of chewing her out for not being a mama bear and putting her foot down and taking this appointment. My wife had no idea what she was talking about as the office had called Mayleigh and not her so she called Mayleigh to find out the details. She informed us that they were looking into another date and would call back. My wife wasted no time though and called herself and was told that the Friday appointment had been given away. We were furious that we had missed this opportunity and were concerned we missed out on a very crucial appointment. We were originally told we would not be able to see him until July 11th if we didn't take the Friday appointment, but within 10 minutes another person called and said we had an appointment set for Wednesday the 6th. This would be perfect in that we could still have our trip and we could see him the second we got back. We still would have much rather took that appointment and ditched the trip to get her in sooner. This would not leave our minds the whole time... We drove to Boise on June 28th and stayed in Hood River for the night. We then stayed in Boise until July 5th. We had a great time but Mayleigh's symptoms seem to be getting worse by the day and we were anxious to get in. We left Boise and drove to Eugene and stayed the night. The next day we would hopefully be meeting one of the best lymphoma doctors in the region. He came highly recommended and we felt we were in the best hands and he was going to get her life back on track! We were nervous of course but confident we were in the right place and were ready to do whatever it took to fight this...We still didn't have a great answer for what was wrong but we knew we would find them within a few short hours.

The Journey Begins - Part 3

On July 6th we met with Dr. Yasenchak who we were told was one of the best lymphoma doctors around and that people for miles drove to see him. We were very confident we had found the right person for Mayleigh and that we would be meeting to setup our appointments for recovery and get chemo started etc. That was not to be the case.

We entered the room and he asked how she was feeling. He did not get right into things immediately and we could sense that something was not good. We continued to listen to Mayleigh tell her story of how she came to be there and we helped chime in as the story had been told many times at this point. Once he was done he began to tell us that what our PC doctor thought initially was a peripheral t-cell lymphoma was not the case and that Mayleigh had Acute Lymphoblastic Lymphoma and that he did not have the resources for treatment and that he would have to refer her.... again.

This was not the news we were anticipating and it was devastating to hear that we just waited another week to hear that he wasn't able to help her. It also made us greatly regret not getting that Friday appointment as we would of had answers the previous week. But we can never look back as it does no good for anyone. All we could do was allow him to get us where we needed to be and that was OHSU... the same place we almost went a month prior had we not cancelled the appointment.
He said we would probably need to start heading up to Portland immediately or possibly the next day. We told him we had been gone a week on vacation and that we were running low on supplies and were really needing to come home first. He said that would probably be fine and to go home and prepare for a phone call from OHSU within the next day.

We drove the 2 hours home to North bend and within a half hour of being home Dr. Medvedova contacted me from OHSU explaining that we needed to get Mayleigh up there immediately. There was no other solution and to do anything different would  go against her orders and it was not recommended. I told her I would call her back as we had already dropped Mayleigh off with her fiance as they hadn't seen each other in a week. I called her and she was devastated. She was already making plans to go out to dinner with her fiance and enjoy the night before she had to go but there was no longer any time to wait. My mom and dad from Montana were here in the meantime waiting for us to get back from Boise so they could see us as well as my brother and his wife and kids whom one of them we had not even met. It was hard for all of us to basically say hello and then good bye just a few minutes later. With heavy hearts and an extreme sense of urgency, we left home for OHSU.

We arrived at OHSU at 9:30 pm on July 6th and she was immediately taken to her room and hooked up to IV's. They then accessed her portacath for the first time which was somewhat painful as they had to poke her twice to get it (we are beginning to get used to things not happening on the first try for Mayleigh unfortunately). This device resides above her right breast and is connected using a catheter straight to a vein for easy administering of all the different drugs she will receive including chemo. This was done during her biopsy in Eugene and sped things up quickly. The first RN told her they would have to install a pick line which scared her out of her wits as she was under the impression that was what the port was for. The Dr. later put in her notes to cancel the pick line as she had a port so it was a simple misunderstanding. This brought great relief to her as they would of had to string a line through her arm all the way to her heart which did not sound like fun.

After getting her settled in and getting all the tests and the initial setup done, we were finally able to get her comfortable and get some sleep. It was an extremely long day that ended around 1:30 am. We went to the cafeteria to get something to eat where we were first made aware of what was going on in the outside world. As Black Lives Matter took hold of the country, we took hold of the only thing that mattered to us and that was Mayleigh's life. It was definitely frustrating to see such chaos around us but we had to remain focused and we knew that tomorrow was going to be incredibly difficult for her. Even though we had been given a horrible diagnosis, we were thankful we finally had Mayleigh in the place she needed to be.

Bone Marrow Aspiration - 1st attempt

On Thursday July 7th, we were told she would have a bone marrow aspriation. They originally wanted to do a spinal tap as well (also called a lumbar puncture or LP for short) but were concerned with her anxiety. She and I both have high levels of anxiety but she tends to have more of a sensory issue than I do. She suffers from misophonia which is caused by a reaction to sounds. In her case eating or chewing sounds. She also has an extreme phobia of a spinal tap or anyone near her spine. They told her that due to this they would just do the BMA instead and do the LP only if necessary.

At 11:45 they began the needle insertion which started with some numbing medication being administered just under the skin. After this numbed the area, the PA. would proceed downward inserting more numbing medication as she went further. Once she reached as far as she could she grabbed another needle that was around 6 inches long which enabled her to reach all the way to the hip bone.

In the meantime, Mayleigh was doing great keeping her anxiety and pain at bay with some amazing coaching from my wife. She has been through 16 surgeries herself and has a pain threshold probably much higher than my own and did an excellent job getting her through this. Mayleigh needed to be face down throughout and this created a major issue with breathing. She was already short of breath and having difficulty due to the tumor on her thymus gland.

She finally reached the bone and was able to switch out the needle with a coring device. This would be inserted like a corkscrew and taken again down to the bone where she was asked if it was sharp or dull. It was dull every time and she seemed to be struggling to find the right place to go through the bone. She removed the core device and inserted the needle again going up and down, right to left, stabbing profusely but not applying any numbing medication. She seemed stuck and Mayleigh was having a very hard time staying calm due to this. The pain threshold began to get worse and she began to remove everything to allow for a different position for her as it was again hard to breathe.

She let her re position herself on her side so that she could breathe a little easier but the PA said she was having a hard time finding the right spot and that she felt she would need to move over another 1/2 inch and start from the beginning. Mayleigh was a trooper and said go ahead and so she started over with the smaller needle, then the bigger one until she get get all the way down again.
This time she never did get to the coring device. She continued to stab endlessly trying to find the right spot by moving the needle right to left, up and down and all the time not really administering any numbing fluid. I was getting major anxiety watching this and knowing she wasn't getting relief as the plunger was not moving. Several times I had to look away and ignore what was going on as I felt the staring was making it drag on longer.

After over an hour of this, the PA finally pulled out and said "I am going to get Dr. Medvedova to come take a look and see if she can get it". Mayleigh had had enough. She simply could not continue and mom and I both agreed that it was enough. This was extremely painful for her (and I) and she had endured over an hour of this and it was not doing anything for our confidence nor for her anxiety.
The best solution was for her to be put under conscious sedation where they could do the BMA and the LP both at the same time. This made us all feel more at ease and they were able to get an anesthesiologist to attempt this the next day at 11:30.

The wife and I both spoke to the PA who attempted the aspiration and told her we believed in her and agreed it was a difficult situation with her anxiety and tumor pressing down making breathing difficult. She appreciated our words and we also thanked her for being on her team. She is a great person and it was just unfortunate to have such difficulties. We appreciated the alternative though as it's usually not suggested. We would have to wait another day to find out what was hiding in the bone marrow but thankful all of our anxiety would be at bay.

Bone Marrow Aspiration - 2nd attempt

Lymphoblastic

On Friday July 8th at 10:30 AM they wheeled Mayleigh down to the pre-op room to get her ready for everything. She so far had been amazing when it comes to dealing with the diagnosis and everything that was expected of her. Knowing she has anxiety and has not had to deal with pain much throughout her life I wasn't sure what to expect but we are so proud of her for being so brave and appreciative through this whole process. She never complains and she thanks everyone for anything they provide for her. She has never once lost her wit and smart-ass personality which has kept us sane throughout. Things like naming the devices closest to her has been a mood breaker for everyone. She has named her IV Phillip because it "fills her up". She also has new friends like "Ted the Bed", Mort the Port" and a new buddy we found downtown for her she named "Lymphoblastic".

It was almost noon before everything was ready to go. We assured her everything was going to be ok and that she was in good hands. The Dr. doing the procedure was one of the best at OHSU and she had a full team of people ready to help if needed. We gave her huge lovins and went out to the waiting room. We were confident it was going to be fine but we were told that if they weren't' able to keep her calm they may need to do the LP without sedation so we were praying they could get them both done at this time to avoid more anxiety.

After about an hour of waiting the student nurse came and told us that all had went well YAH!!!!
When we got to Mayleigh she was already awake and immediately let us know that she was not asleep and could feel everything. I was given conscious sedation for an endoscopy and although I remember at first choking on the camera going down, after trying to pull it out they gave me more medication and I was out and didn't remember anything after that. She unfortunately remembers everything.
Either way it was over and they got a good sample and was even able to get the spinal tap done. They also administered a first dose of chemo to the spinal column for prevention; even if cancer was not present they would still treat this area to protect the central nervous system.

We were very happy and again thankful for having the right doctors. We would soon have additional answers as to what was going on. At this point we were still thinking it was Acute T-Cell Lymphoblastic Lymphoma. A couple of times the doctors referred to it as leukemia but they often twine together and have many of the same symptoms. The main differences are that in leukemia, the cancer cell is mainly in the bone marrow and blood, while in lymphoma it tends to be in lymph nodes and other tissues. Being that her lymph nodes were so out of whack they were leaning towards lymphoma but OHSU wants all their own answers so they re-did allot of the testing under their own roof to be sure.

Mayleigh was already scheduled for a pet scan as well right after the biopsy so they wheeled her upstairs where she was given contrast and had to wait an hour to go through the scan. After another hour and a half she was finally back in her room where we awaited the results.

Diagnosis - Acute T-Cell Lymphoblastic Leukemia

At 8:30 PM  on July 8th, Dr. Medvedova and the rest of the team joined us in her room. She sat down and began to explain to us that they had allot of the data in but they would need pathology and radiology to fully read the pet scan and brain MRI but wouldn't be done until Monday at the earliest.

She began to explain that her bone marrow was filled with cancer and therefore her diagnosis has changed to leukemia and not lymphoma. Ever since seeing our PC doctor we had thought it was lymphoma and now this changed everything. We were initially scared to death as we had not researched leukemia nor had any knowledge of what that change meant. She also let us know that she was seeing some shine in the pet scan around the brain which possibly represented cancerous activity. After speaking with another doctor on the 10th we were informed that it was not definite and that they weren't sure what it was yet and to not get ahead of ourselves. This was somewhat of a relief as it is much more difficult to treat if it's in the spinal fluid. Needless to say this was devastating to hear.

She also began to explain the treatment. This would include a 30 day initial period where she would undergo a very intense chemo regimen on top of additional radiation treatments a couple months later and up to 2 1/2 years of maintenance chemo. She would also start immediately on 140mg prednisone being administered at 70mg doses in the morning and evening starting that night. At these high levels it could send her into type 2 diabetes requiring insulin injections and potentially it could become permanent. The alternatives were definitely worse and she had no choice to start as recommended. The answers just kept getting worse and worse and to know our baby girl was basically filled with cancer was just blowing us away. Through it all she has remained witty, intuitive, and on top of everything when it comes to the details. In allot of ways she asks better questions than us at times and it was just shocking to hear that it could be in her spinal fluid. She also told us that had we not come in when we did, Mayleigh most likely would be dead within a month. We were speechless...

We thought of all the times we were so close to being where we needed to be and the missed opportunities, the trip to Boise, the cancelling of the original OHSU appointment. They assured us to not beat ourselves up over this and that we were there now and they were going to do everything possible to get her well again. Even though we felt like we were late to the show they made us feel optimistic that we are still able to beat this and we have no doubts of that. With so much love and support from everyone we know it's hard not to feel confident. And Mayleigh's attitude could not be better. She is one of the most stubborn people I know and if she says she's gonna beat cancer you can bet your life she won't quit till she does!

After being told we would be starting chemo the next day they left the room. At last. We finally had our answers. A.L.L. Probably the last thing I ever thought would invade my baby girl and here it was all throughout her body. We knew at some point we were going to have to come home as we have 2 dogs and it had already been nearly 2 weeks since being home longer than an hour. My wife's business was falling behind and we desperately needed to get back to resolve a few issues with life. We were not looking forward to this as we want nothing more than to be by her side non stop. Thankfully her fiance would be there on Sunday so we could get a few days to go back and catch up. But first things first... her first round of chemo as scheduled for Saturday the 9th and we weren't quite sure what to expect. We would soon find out.