Chemo Warrior

What can I say; this image describes my daughter very well. Today she proved to be a WARRIOR! Mayleigh has shown time and time again her inner strength, fight and determination to continue beating cancer! Today chemotherapy tried pitching us a fastball once again. She has had a very tough last two weeks of traveling four times a week, 2.5 hour drives each way though Translink (which we're grateful for but HATE having to use); riding with well-meaning talkative strangers while just trying to rest from Chemotherapy. She woke up today feeling "OK" compared to the last few weeks of nausea and headaches. We are in the next 2 week phase of her treatment protocol that requires her to travel only once a week. She was very excited to know it would be an "easier" week for her (we all thought). Today's' concoction of chemo had been given to her before while at OHSU and she tolerated them OK in the past. Today however, was another story. She was given PEG-Asparaginase through her port and was hit quickly with an itching sensation all over her arms and a tightening in her chest/throat. It scared her and panic kicked in with each restricted breath. They quickly gave her an antihistamine & medication to help her through her port. The Willamette Valley Cancer Institute's staff had EMT there to get her to the next building (hospital is next door) within minutes. Her pulse was so high at times they couldn't read it but I was told they were between 180-200. She started to get improvement fairly quickly and the exhaustion from the experience and drugs kicked in so she could rest. She called me very groggy and out of it to tell me she couldn't remember what the ER doctor said. So a few determined "momma bear calls" later...I had her Oncology doctor and the ER doctor on a 3 way call to make sure we were all on the same page with a new plan. Mayleigh will stay at the hospital tonight for more red blood cells as she continues to be very anemic. This will help her in many ways, keep her resting and hopefully stable through the night until we can go get her and take her home!! I was told that the drug PEG-Asparaginase is one that is known to cause issues as the way it is metabolized in the body is different each dose, with tolerance getting worse after the first treatment.

Cancer sucks, it tries growing its way into too many lives and can effect everyone... even those without cancer! I am sure I'm like most parents, its incredibly hard to watch your beautiful child thrown such a tough curveball. But even though she hates baseball, she is swinging, hitting home runs everyday and winning no matter what pitch is thrown at her. So not only is she a WARRIOR; she is a HERO too!! We love you Mayleigh Workman, together we WILL BEAT THIS AND WIN!!

8-23-16 - Hospital visit #2

After a week of traveling to Eugene for treatments, Mayleigh is quickly beginning to realize the situation at hand. 4-5 hours a day, 4 times  a week were going to be spent driving in a car with a complete stranger who:
A. may like playing loud music, listen to politics etc.
B. Smoke cigarettes and doesn't mind everyone getting a whiff.
C. They may want to eat in the car at some point considering it is 2 hours.

Mayleigh, as I have mentioned, has misophonia (a sensory issue involving eating sounds) and coupled with not feeling the greatest from the chemo and not getting very good sleep, not to mention getting up at 4:30 am to leave at 5 to be in Eugene by 8 some days, has left her feeling very irritable at the fact that she has to deal with this for another 5 months and 3 weeks.

To remedy this we were able to get Doctor Sharman to give us a referral to speak with Dr. Cook in North Bend. He has been recommended a couple times by our PA as well as Dr. Herbis (ENT) and we were very excited at the thought of being able to administer her treatment right here in town.

On Monday, August 23rd we met with Dr. Cook and he sounded very skeptical but optimistic in that; he thinks he is able to treat her, but it will take the right coordination with many different elements that may or may not be doable considering our location. It's every difficult to get things quickly on the coast and blood is something that she will be needing on a regular basis. He would need to stick to the 4 times a week regimen and cannot stray from the path by more than a day.

He let us know that he has only administered about 3 ALL cases in his 16 years of practise so that doesn't scream to us that he will be the best person for the job but he definitely took into consideration all the obstacles and even made considerations for potential issues and wants the clinical trials team to monitor the process as well to align our community with this rare treatment. As he mentioned, ALL is very rare and people in this area do not see cases such as hers on a regular, if any, basis.

Today she had to be in Eugene at 8 am for a full blood panel and chemo treatment. She was able to get back in a decent time frame but she was exhausted. She pretty much walked in the house and went straight to bed. Her energy levels have been pretty bad lately and she spends most of her time sleeping or laying in bed. We did get her to come out to Sunset Bay with us for an hour this weekend but she has very little energy to do much which is understandable. Not only was the chemo making her feel horrible, the blood counts did not come back that good and therefore she is up at Bay Area Hospital again tonight getting a transfusion. Her red blood cell count is pretty low and she is going to need 2 bags of blood and will probably be released sometime early Wednesday morning.

Thank goodness again for my tenacious wife in making several phone calls to get this to happen correctly. She went round and round and at one point thought it may not even happen even though her oncologist was requiring it. Insurance obstacles coupled with so many hipa policies leave even employees clueless and it's really screwing up the information highway in hospitals. I have no clue how anything gets done honestly.

After speaking with Dr. Hunter, our PA, he was able to get us in to BAH and get her setup for the transfusion. I'm shocked it took even that but at least she is there and getting what she needs. Unfortunately, they were unable to draw anything from her port and had to stick her hand several times (painfully of course) before getting a worthy vein. Dr. Sharman had told us on consultation that from the MRI he could see that her port was sticking a bit too far towards her heart and that they needed to have it moved back out a bit. He wasn't extremely concerned but he did want it remedied asap.

We were hoping to hear a call back from Dr. Cook today as well as he was going to speak with Dr. Hays Lattin at OHSU to discuss the treatment and see if he would be a good fit for this protocol. He does admit his lack of knowledge but at least is confident enough to think it could be a possibility but will leave it up to Hays Lattin to determine her fate. We are all praying she can avoid these long days of riding in vehicles with unknown adventures. I know she definitely does not need additional stress at this time.

I will update as soon as we hear more but for now we just hope her system will sustain the treatment without delays. Transfusions sound like another addition to her regimen that will take additional time off her clock. She continues to push through though every step of the way with whatever is thrown at her. We love you sweetheart! Stay strong, sweet dreams and we'll see you in the morning <3

Consolodation - 8-16-16

2 year regimen

On Friday August 12th, Mayleigh was admitted to Bay Area Hospital where she had cold symptoms coupled with neutropenic blood levels. She would spend the next 4 days regaining her strength and being sealed off to avoid any more possible infection. She was scheduled on Monday to begin her consolidation phase in Eugene but she unfortunately had to cancel due to being in the hospital.

With no time to delay, we were called today to get her to Eugene within 3 hours for an appointment at 1:15. They want to keep her on schedule and abide by the regimen given by OHSU as much as possible so we really had no option but to drop everything and get ready for a 2 hour drive.

Today we met her doctor who will be administering her treatment for the next 2 years Doctor Jeff Sharman at Willamette Valley Cancer Institute. He specializes in cancers of the blood and has administered this type of regimen several times prior and was very informative about what to expect. We quickly found out (in more thorough detail) why remission is a word to be taken with a grain of salt. If she was to not continue this treatment the leukemia would be back within months and most likely with a vengeance. Being that we tried to kill it off, it sounds like this cancer isn't in the forgiveness business so we would prefer to stay on top of things.

Upon entering the administering room, we quickly realized this was an all too familiar view when watching someone get chemo such as in the movies. You have a plethora of chairs all lined up with IV stations (aka Phillips') pointed out a bay window to allow for staring out into the vast wilderness beyond. You have your reading materials, binoculars and puzzles for when you get bored. You have your mostly over 65 patients scattered throughout and then you have Mayleigh. 20 years old, veteran of the chemo treatment, already aware of what was ahead of her and not letting it effect her. She was getting ready for her 4th and 5th different kinds of chemotherapy without a care in the world. Ain't no cancer gonna mess up her plans..hell nah!~ :D

The first chemo drug is called Cytarabine and is a common treatment for leukemia. The most common side effects are the typical nausea, feeling like crap and blood counts dropping to neutropenic levels. Nothing too out of the ordinary for what we've already experienced. The second chemo is Cyclophosphamide and unfortunately this one has additional long term pitfalls such as infertility. There have been many discussions on this subject and the risks involved with having children when all this is through. Mayleigh has agreed that her health at this point is ultimately the only focus we can have right now and we are going to leave it up to "if it's meant to be" it will happen to guide the future. We of course want grandchildren someday as well but we also agree firmly that we are on the path we need to be and again without further delay.

As her last drip of chemo enters her body and the saline begins to clean things up, her body continues to not show any signs of the damage it's most likely doing on the inside. As cancer cells begin to run for their lives, we can't help but think of what will happen when the effects begin for this new treatment. Will she have any side effects or will it be business as usual? So far she has had little to no symptoms from previous treatments so we hope it continues its course. She also had a new steroid and anti nausea medication added to help her body tolerate the toxic concoction she has received.

Two and a half hours later she is finished. Ready for the 2 hour adventure home. Tomorrow she will be utilizing Trans Link to transport her for most likely the remainder of her treatment with random trips with mom and dad thrown in. I was mistaken on how long Consolidation is and she will have to go to Eugene 4 times a week for the next 6 months instead of 2 months as I thought. After that it drops down to once a week.
This is going to be very grueling for her system and sanity either way. We have had the discussion of allowing a local doctor to administer this treatment and Dr. Sharman was familiar with him and thought he may be able to do it but we will consult with him to see if it will be the right choice. We ultimately want the A Team and if it takes 6 hours a day to make sure she's 100% cured we'll do just that. At this point it's a guarantee she is in Eugene for the next couple months and she's got a lot of miles ahead. We are confident every one of them will be worth while though!

Erosion Revelation & the "Fog"

While at Portlands Saturday market on the waterfront, I found myself staring at so many beautiful art pieces with tears in my eyes thinking of my beautiful artistic daughter fighting for her health up at OHSU Hospital. As her mother, it was hard to enjoy it without her there with me to admire & appreciate. However, I have always believed that all things that come into our lives (including & most likely the hardest of things) are to teach us many of life's most important lessons and or to help us grow spiritually in some form. I can personally say that for every struggle in my life, amazing strength & blessings (in many forms) have been gained! It is because I have come to find gratitude from all of my struggles (a novel's worth indeed but not important here) that I know Mayleigh's difficult road is carving a beautiful future for her and will reveal to her the inner strength she didn't yet know existed within her. Even as chemotherapy erodes away her cancer, it will also reveal the beauty of her loving soul. As she reveals her inner strength, she'll find her road to health and a very bright future! She may feel beaten with this kind of "wind" but she is strong like the cliffs... whose beauty was sculpted by the harsh winds. So when I read the title of this art piece "Erosion Revelation"; it was truly art that hit my heart!

After many weeks in the hustle & bustle of the beautiful city of Portland (and OHSU-land) I was very happy to be returning home to the quite & peaceful coast that I love and miss. Larry and I went to the sunset beach to relax and have dinner by campfire while Mayleigh celebrated her hostage release with her friends. It was the kind of night that captured much of the journey over the last few weeks for me. Foggy with a chance of sun. The "fog" for me began once we got the news that cancer had taken my daughter's body hostage, hiding even into her bone marrow and therefore we had to be become hostage negotiators! Fog really sucks; it sneaks in blocking out vision. It feels "eery and spooky". Its' presence weighing thick & heavy, leaving confusion as to which way to go. All one can do is to pray for the fog to lift or reveal a path to take. Since I beleive everything in life is perspective, I tried to feel my way through the fog but I REALLY JUST WANTED FOG-BLOCKING GLASSES!! Someone fogged up my prescription lenses; my vision of our family's lives was being warped! As chemo treatments started and Mayleigh kept her whit, sense of humor and positive attitude...the fog lightened to reveal glimmers of sun rays. My incredible husband...my rock & strength, has a tremendous inner compass. He found his way out of the fog, created maps to show others the road we were on and revealed his heart on our behalf until the fog on my lenses began to clear enough to see light and be a part of writing about our experience today. Thank you Larry for being the lighthouse to guide us through murky waters,for being the boat keeping us afloat and for being our umbrella when it rains! You are everything we need when we need it and your an incredible father, husband and my best friend. I love you with all that I am and could not be the person I am today without you. This photo also shows the sun peering thru the fog as a reminder of the warmth beyond the haze. To all of you whom have been following our blog, offering loving messages, well wishes, prayers, donations and words of encouragement...YOU ARE THE SUN RAYS! You're the light that pierces through our fog. I cannot thank you all individually as there were SO MANY of you whom reached out. A special thank you to the Ronald McDonald House for the blessings of comfortable housing and a work space that allowed me to keep manufacturing "hugs" to help others & keep Framehuggers LLC going yet keeping me close to see my daughter each day! During a time of so much uncertainty, the gifts of all the love shown is truly priceless. I am forever grateful to feel the heat radiating through our family's haze. We are WARM with your love, blessed with many graces and we'll use the heat to keep the flames burning as we find our way through intermittent fog ahead seeking our daughters health. Much love and hugs to you all!

Update Saturday, August 13th - Cloudy with a chance of surprise

Whenever I have gotten a cold, I could swear at times that I know precisely the second when that little germ bug flies into my body and lands in the back of my throat. That first little tickle, that first dryness and then cough of your cold sends the spidey sense to your brain and you instantly know that you've been infected. (who needs doctors,,,)

On Wednesday, Mayleigh was sitting on the couch watching TV.  I had gone to get a drink of water when I heard her cough from the kitchen. Then again, and again. She had to get a drink of water to calm it down but after it was over... she knew... She was getting cold. 

The doctors forewarned us but also reassured us that her levels were pretty good all considering and that she should be able to do most things with caution. She would be susceptible to getting sick and if she were ever to get a fever over 100 to immediately go to the emergency room. We have masks and have been grilled on the importance of using hand sanitizer and washing so we are doing the best we can when it comes to cleanliness. With colds though, it doesn't seem to matter how much you try to protect yourself; if your going to get sick, your gonna get sick. Unless you live in a bubble, there is not much to prevent this.

Last night (Friday the 12th) Mayleigh and Ian went to dinner. After they were done Mayleigh wasn't feeling well so she took her temperature. It read 100.1. She called us to let us know they were going to the ER and at around 10pm last night she was admitted to Bay Area Hospital. We assumed she would just be given some tests but they have since accessed her port to draw her blood and to keep an eye on her closer as she does present to have an infection of some kind. She has had massive swelling in her feet and legs and her left foot has a very concerning water blister that popped and an overall redness to her foot. We have been keeping this clean and wrapped in the meantime but I am very worried due to how swollen she is.

They put her on IV's where they are giving her an antibiotic as well. She has become neutripenic again and her white blood cell count has dropped significantly since OHSU so she is currently getting red blood cells to help raise her levels. I would much prefer she be in a sterile environment but I hate that she has landed right back in the hospital. We are staying confident that her immune system will do it's job and she will fight through this but none of us know anyone with colds so it's very concerning she was exposed so quickly. A trip to the grocery store introduces you to God knows what though and although she hasn't been going crazy, she has been to the store and trying to stay somewhat active outside of keeping her feet elevated whenever possible.

Mayleigh has also seemed different the past week in her demeanor. Lately she has been kind of down in the dumps. For good reason of course but something is amiss and I think it just all comes down to so much energy draining, painful experiences pounding her over and over again. She has had so much happen to her in such a short time I think it's starting to catch up to her and she's getting tired of not catching a break. She has also been experiencing non stop headaches and it's making it difficult to sleep or even concentrate at times. She said it's kind of been there the whole time but she never said anything about it till recently.

Through it all she has kept it a positive, painless, focused experience. SHE HAS. If it wasn't for her attitude in all of this, this blog could be written very differently and it's all because she has been so strong and never complains about anything even though it may be worse than it is. We feel horrible that our baby girl has to go through this and there isn't much we can do but just watch as it unfolds. But she has been our strength every step of the way and it's very sad to see this breaking her down. 

I know we will battle through this but we need to get her home. She will hopefully be coming home to us when released where we can better keep an eye out for her. I want to know we can be more in control of her environment and she really needs help when it comes to the physical aspects. The chemo has done it's job in ridding her bone marrow of cancer but that has left her very weak and shockingly so. She has several times needed help with just one step and we have been forewarned it could get worse as it goes on with this treatment. She will be in Eugene on Monday for her first appointment with her new doctor at Willamette Valley Cancer Institute (as long as she's out of the hospital) and this will begin her 2 month consolidation phase, with chemo 4 times a week. This coupled with being off prednisone will leave her body feeling depleted to say the least. I'm personally not a fan of this and wish we could battle it with nutrition but at this point we are on auto pilot when it comes to this treatment. The docs seem to assure us she is on the right path so we will continue to stay the course. 

As smooth as everything has been, we are trying to prepare for some difficult times. After all, having a straw in your brain, a tube in your chest and chemo in your veins has got to bring you down a little. I know it would be difficult to keep my spirits up on a daily basis for sure. But all we can do is still just take one day at a time and do our best to be there for whenever she needs us. It looks like she is going to be needing us more than ever so we are preparing for some new guests.

Thank you again for your thoughts and prayers. We would appreciate any and all energy and focus going towards our daughter to continue as she prepares for a difficult road. Every ounce of love is a gift and we are so thankful for it!

It's official - 8/10/16

Mayleigh's bone marrow biopsy results are in... SHE IS IN COMPLETE REMISSION!!!

There are no signs of acute leukemia and therefore she has achieved exactly what we set out to do and that was achieve remission during induction phase. This is the best news we could have ever received yet it's the only news we were anticipating. We are beyond ourselves with joy and cannot thank everyone enough for their support. We will still be traveling to Eugene next Monday to resume treatments but we are very happy to have the results be nothing less than our goal.

On the downside Mayleigh has continued to have massive swelling in her feet and ankles as well as abdomen. These are side effects of both chemo and prednisone but thankfully she has been off prednisone since last Sunday. It's causing a water blister on one foot and some very red and sore spots on her abdomen. Hopefully it subsides soon as the prednisone wears off but it's definitely concerning. She has also had some pretty bad headaches but overall she is up and moving and currently helping mom juice :D

I am in shock in some ways that we were able to achieve this so quickly but again we never let ourselves think there was any alternatives. We will take it all in stride and continue to fight just as hard during the next 2 phases and hopefully that includes the thoughts and prayers from all of you!

Thank you again for following our journey. It could never have been done quite so easily had it not been for love! <3
And happy birthday to my mom. I couldn't think of any better present than to have your grandaughter be cancer free!!! :D

Debbie Lynn - A True Treasure

I seem to have forgotten to mention a very important person that has helped us tremendously through this process. I feel horrible not mentioning her name as she has gone above and beyond for us on multiple occasions. This person is Debbie Lynn.

Debbie is exactly the kind of friend you want, and exactly the kind of friend everyone needs. She is always willing to help in any way she can and is amazingly crafty and willing to share her talents without question. She and my wife have built a very solid relationship over the past couple years and I can not express my gratitude enough for all she has done for us as we were out of town. I know Ivan and Obi greatly appreciated the company and were spoiled to have such a great person taking care of them.

Ian (Mayleigh's fiancée ) and Debbie both cared for our dogs while we were in Portland. Both of them have watched them on several occasions. I know that not only do our dogs feel comfortable with both of them, we couldn't of asked for more trusting people to care for our home and our boys.

Thank you so much for all you have done for us Debbie! We are both very fortunate to have crossed paths and we hope to be able to repay the favor to you when needed. You have at the very least earned a hearty supply of smoked tri tip, chicken, pulled pork, brisket..etc... Just let us know :D

The Hostage Situation Is Over!

As of Friday August 5th, 2016 Mayleigh Workman has been hereby dismissed from Oregon Health and Science University upon her own recognises and has been given news that she has no new cancer cells and the packed counts of previous bone marrow cancer cells has shrunk significantly to the point they did not see anything on the pet scan. This does not 100% verify that it is gone completely and she is in remission but it gives us even greater hope that the possibility is most definitely a reality.

Thursday the 4th, Mayleigh was supposed to get her pet scan done. She was awakened at 4:00 am to give her something to eat to ensure her blood sugar would be in the proper range but for whatever reason she dropped to low and was not able to get it done. She also was in severe pain as they did not give her any prednisone thinking this could help with blood sugars. This was very disappointing being that we thought by getting it done on Thursday we might possibly have some info on Friday. This would not be the case. Her blood sugar was in the low 70's and therefore they had to postpone it till Friday. This would mean she would have to be on a 15 hour fast in order to fit both the pet scan in and the bone marrow biopsy (with all things going as planned).

On Friday morning, Mayleigh was again monitored closely and given something to eat to ensure she wouldn't drop low. She was in the mid 250 range around midnight and by morning she had dropped to 120ish which allowed them to do the test without issue. The only problem was that the scan was at 2:30 pm and the bone marrow biopsy was at 8:00am. Needless to say, as we have experienced time and time again, the hospital runs on many different elements and transportation seems to be the bottleneck. She finally got to the biopsy around 9:00 then finished up around 10:00. She came out of sedation and was shocked to know it was over. She recalls telling the doctor she was wanting a chicken sandwich and if it would be ok and he said go ahead and eat it and next thing she knew she woke up lol, I guess allot of patients talk in their sleep about food but I understand considering your fasting normally.

After waiting another hour to be moved towards the pet scan, they told her she would have to wait an hour and a half for the dye injection and then up to another hour for the scan. After an additonal hour delay, she finally was able to wrap up but again transportation created a bottleneck. She didn't get back to her room till almost 5:00 pm. Needless to say she was starving after going nearly 20 hours without food. Thankfully she was able to go get some and when we came back they informed us that she may have the opportunity to go to the Ronald McDonald House and stay the night with us and be discharged.
After speaking with her PA that evening he agreed that it would be fine if she left and thought her blood counts and overall situation was fine to be released. We were blown away. We were happy but hesitant given that it was all happening so fast. We wanted to make sure she wasn't going to be in pain and having major issues coming off prednisone so suddenly and she did after all have a bone marrow biopsy under sedation as well as chemo administered to her ommaya reservoir. They assured us that she should be ok, gave her enough meds for a small country and set her free.

We were speechless... To have gone through so much in the past 4 months and for it to almost sound like we were done was beyond mind blowing. We still are waiting for the official results from the bone marrow biopsy but all along I've felt positive that we were going to defeat this and I can't let any other thought get in the way. To have seen her go through so much in such a short time span has made my mind swim and the thought of what has been on hold has been furthest from my mind up to this point. Nothing in this world matters except for the well being of our daughter. It almost feels as if I've lost all knowledge on anything except for how to love and support my family.

For the past 3 weeks we have eat and breathed OHSU the hotel, OHSU the hotel. We've had some breaks in between with Ian being around, as well as my mom but other than that I felt as if we were in a time warp between sleep and hospital. All along, Mayleigh felt like she was being held hostage and time could not go fast enough. For 33 days she was a trooper beyond words. She endured pain, loneliness, solitude and fears I cannot fathom for myself yet she did not waver or let on that she had any doubts that she was going to defeat this. I can only believe this strength has come from my wife as she has endured more pain than both of us. She has had 14 surgeries in her lifetime and had to give herself insulin shots at the age of 9 for type 1 diabetes. I screamed bloody murder at the sight of a needle and remember crying like a baby if I knew I was gonna get poked so I know she has learned coping with pain at a much higher level than I could ever dream. The bone marrow biopsy alone will haunt me for a while and yet she's had 2 of them as well as a port in her head and chest, biopsy of her head and 2 of her parotid glands. She has been poked and prodded more times than I can count and she is finally home and with her fiance getting a second chance at life. It's very surreal, humbling and exciting and none of this could have been possible without each and everyone of you reading this blog and putting thoughts, energy and love into our daughter and our family.

By next week we will have our answer on whether she is in remission. We take this word with a grain of salt as it has no guarantees for her future. What we can guarantee is that she will most definitely have a new outlook on life and realizes how fragile it can be when taken for granted. I think we all have vices in our life and I believe the one that is most accepted and ignored is the foods we put in our body. I would be a hypocrite to say I eat my words. I am guilty of life's pleasures and food has a grip on me more than I would like it to. But with so much sickness, cancers, autism, auto immune etc. these days, it's hard to justify any other reason but what we put into our bodies as being the culprit. Food is an addiction like no other and it's easily acceptable since we all need it. But how quickly things can get away from us as we indulge and live to eat. My hope for our future is simple and my wife has said it time and time again to us. Someday, I hope we cant eat to live.

Being home has been bittersweet. We arrived around 4pm Saturday and quickly noticed a slight stench upon entering, not to  mention our dogs licking us to death. This was by far the longest we had been gone from them. I ventured to the fridge to take a peak and I noticed it blinking which meant only one thing. The power went out and the fridge didn't get reset.. OMG.... 68 degrees and the smell that blasted me about knocked me out the back door. Not to mention a few flies that blew past me.
I don't know when it went out but it had to have been a couple days and good Lord.. It was atrocious. Needless to say we had to dump everything in the fridge and freezer. All my precious smoked chicken, hot dogs gone.. All our condiments and even the 5 year old jelly gone. We had to clean house in a bad way!
Oh well, at least we have our hot tub (a Mother's Day present when we first moved here in 2006). Our backs had been ailing us for many a day without having the comforts of our own bed. The hot tub has given us both relief from time to time and there was nothing else from our minds after a long drive home. I had unplugged it while gone so I went out to put the fuse back in and fire it up. It started up and I cranked the heat and a couple seconds later a loud pop. I thought it was a jar that Camille had dropped but she assured me it wasn't. I checked the breaker and sure enough it had blown. I also smelled smoke. This prompted me to reset the breaker and try it again like a dummy. lol. Again more smoke and another pop... Allot more smoke :\
I'm not sure to what extent it's fubar but it's definitely not going to be enjoyed in the near future. Unless anyone we know is a hot tub repairman/woman :D Hopefully it's just a blown fuse but it didn't sound or smell very good.

Needless to say we were not having much luck being home already but none of it truly matters as we look to the future. Mayleigh begins her consolidation phase on August 15th in Eugene and we will continue her treatment to keep this disease away. I wish we could say our journey is over but it has just begun. With all hope she will have completely beaten cancer in 2 years time.

Thank you again for following our journey. I hope it has been informative as well as entertaining. I also hope that someday this may help another family discover a misdiagnosis as we did. I will continue updates as often as we can and to provide any additional news as it comes in. Mayleigh plans to enjoy the next 9 days of her freedom figuring out her agenda for the next couple months which will be driving to Eugene 4 times a week. Camille will be back to manufacturing Framehuggers and Headhuggers across the world and I'll be heading to work tomorrow with only a month left to get things ready for the new year. It sounds like we hired a new tech so hopefully we will get things back up to speed in no time.

Have a great week everyone and thank you for your love and support. We could not have done this without you!!! <3

The Bubble - Wed, August 3rd

When your world is encased in glass, or even worse a bubble, it is easy to be shaken or brought to your knees if said bubble breaks. We have been, like so many others right now, living in a bubble that we are hoping stays in tact and continues to shield us from all the negativity that could engulf us if we let our guard down even for a second. We have had many things happen lately that could of shattered this imaginary, protective barrier and sent us spiraling towards a dark and dreary place of pessimistic thoughts and pending doom but for whatever reasons we have yet to let anything affect our focus and that is: what is our next step; how do we move forward.
One of the main reasons for this is due to Mayleigh's positive attitude and her ability to only allow for one outcome and that is to rid herself of cancer. Every step of this process has made her stronger and even though she has been given progressively worse news at times, she continues to brush it off and only focus on what she has to do to get out of her four walled world.

Yesterday we were finally able to meet the "Wizard of Oz" the "Man Behind The Mask" the leukemia expert Dr. Brandon Hayes-Latten. He was extremely generous offering nearly 40 minutes of his time to discuss all our questions and concerns for Mayleigh's treatment from this point forward.

He started at the beginning explaining the disease in full details and how her t-cells basically stopped functioning properly and decided to mutate against her causing masses of these cells (tumors) to begin growing in her lymph nodes. He also mentioned this being the reason it hid itself so well from other doctors and not presenting itself more clearly.


He also spoke about her closing in on the end of the 30 day induction phase (Mayleigh refers to this as the hostage situation) and explained to us what was to happen within the next week or 2.

On Thursday Mayleigh will receive another Pet Scan. This will show how much the tumors have shrunk as well as how much "shine" is left from any cancerous activity in her bone marrow and other lymph nodes. On Friday she will receive another bone marrow aspiration under sedation. This will also be her last day of prednisone which she continues to take at 140mg a day. Her blood sugars have been fluctuating from mid 50's to high 200's but this doesn't seem to concern them to badly and should disappear after stopping the prednisone. We were hoping for them to take her off prednisone tomorrow so that we can see her reaction to this large dose disappearing from her regimen but today they informed us they would continue until Friday. Regardless we will not receive the results from these tests until the following week.
She will also receive another chemo treatment in her ommya port immediately after the aspiration and this will conclude her treatment for the induction phase. She will then be released Saturday morning and after 40+ days will get to sleep in her own bed! :D.

Her next phase is called consolidation and will require trips to Eugene 3-4 times a week for 8 weeks. Her treatments will be somewhat different than what she has been receiving currently so we are told there may be new side effects as well.
After this phase is complete she will require maintenance treatments for the next year and a half which will also require trips to Eugene but not as frequent. There are always constant risks of infections and fevers which may introduce additional hospital times but he reassured us that kids at this age fair pretty well with this regimen but we will need to take extra precautions as she becomes
neutropenic and her levels begin to drop.
Overall he continued to give us confidence that her lack of symptoms and side effects were nothing but positive news and therefore we are trying to remain optimistic that she will receive news that she is in remission. It's very hard to leave the hospital without even knowing what this treatment has actually done for her. At this point we have been buying time and trying to keep our minds off these speculations and just focusing on nothing but positive results. Of course your mind wanders from time to time and even considers the possibilities that we may not receive the news we want but I can't help but think we most definitely will have good news and our lives will be back on track.


She has also been allowed to go down to the 9th floor where she can enjoy some outdoor scenery and fresh air. This was the first time she has been allowed outside in over 2 weeks. Her Grandma Marie was also in town to visit her so she was able to have some new company vs boring mom and dad.

Through all of this experience there is one piece of the puzzle that has held it all together on an emotional front for all of us. Who's made our financial situation and obstacles much easier by being an amazingly strong woman, an exemplary role model, and a mobile entrepreneur that has sacrificed many hours sewing heastraps and eye patches, paying our bills, coordinating dog feedings for our boys still at home and at the same time managing to take care of her own health and dealing with type 1 diabetes every step of the way. This person is my wife, and Mayleigh's mother: Camille Workman

Camille has spent several days having to sew instead of coming up to see Mayleigh and I know this has been difficult as she wants nothing more than to be able to spend time with her. But to be able to transport Framehuggers to the Ronald McDonald house has been priceless for us and for her to sacrifice her time to continue to provide for us is beyond words and I know Mayleigh and I both appreciate this more than she will ever know.
She has also had profound results from vegetable juicing & nutrition and being without her juicer and blender for smoothies has been extremely difficult to manage. Thankfully Portland has several juice bars but at an extremely high cost compared to doing it yourself. Thankfully the flare ups have been minimal and she has done amazingly well considering we are beyond stressed and way outside our element.
Through it all she has stayed in tact. She has managed to avoid bursting, popping, exploding and falling. She has been keeping us afloat and allowing us to drift to the finish line unscathed. If you haven't figured it out already, Camille is also our bubble. She is our protective barrier shielding us from the outside world. She is the glue holding us together and making sure we are all taken care of and are prepared for the next steps in our lives. I may have provided the means of transportation from point A to point B but Camille has single handedly made this experience possible by just being herself; An amazing mother, a dedicated wife and the best friend I could ever have asked for. We love you so much  and we could never have done this without you!!!! <3 <3 <3

Thank you again to all that have contributed to our cause through financial or love support as well as through thoughts and prayers. It has truly made this experience manageable and we are so grateful to everyone! Mayleigh has also received several letters & gifts from family & North Bend staff; again we are humbled by this jesture. It is going to be a whirlwind catching back up with work and life and I will try and post an update as soon as we know more details. Thank you for reading this blog and taking an interest in our daughters life. We are thankful beyond words!!!