Birthday Wishes Come True!

It's a BIRTHDAY WISH COME TRUE!!!!
As Mayleigh's 21st birthday approaches us this week; we received the greatest birthday gift; continued REMISSION! Mayleigh and Ian went to OHSU last week for another bone marrow biopsy. Seeing her feeling better and having less chemo over the last few weeks was fantastic; however, knowing she missed some of the treatments to keep on protocol unfortunately left a little room for worry to creep its ugly head in. Larry and I couldn't be happier to know that for our daughter's 21st Birthday, we had something far greater to celebrate!!

Thankfully we can truly celebrate knowing that the best days for Mayleigh are yet to come. I know that one cannot truly appreciate the light...unless you experience darkness. Having gone through some scary darkness the last few months, has us all very happy to have continued light cast upon us. I only want to have this difficult trial catapult our daughter into a brighter future as she learns to deeply appreciate life, family, friends and a healthy body. While it is sad to witness any young person having to overcome such huge challenges at such a young age...I believe it can be a "blessing of perspective" that can lead to a greater love and respect of life that many people never realize in their lifetime. Cheers to life's beautiful yet hard life lessons!

We look forward to seeing Mayleigh's inner light grow brighter as quality begins on the inside and works it way out. We also want to celebrate Ian's good news. He has been working graveyard shifts as a caregiver for the Star of Hope. This has been hard as Mayleigh's treatments require being awake in the day so Ian has often gone without sleep to help her. He applied to take a CNA course so that he could open opportunities for better pay and day shifts. He was accepted to take this course on scholarship starting in January. We are very proud of Ian for taking steps to make a better future for Mayleigh and himself. We have a LOT to be grateful for this holiday season and we are so thankful for the continued love and support! We wish you all a very Merry Christmas & a blessed new year!!

And The Winner Is........

NOT CANCER!!!
With the weeks and months passing us by at a near record pace (pretty sure I say this every other day), I'm finding it very difficult to find time to sit down and put to words what hasn't already been said and or written already.
My wife has been doing a tremendous job keeping up with the Blog not to mention: the house, the appointments, the rides, the medications, the shopping, sewing, cleaning, cooking etc. etc etc.........I simply have been in a rut on how to focus long enough for one and two where to begin.

It's been over 3 months now since I have written a post to this blog. In that time I have returned to work where I have been consumed ever since. I was under the impression I was receiving a new job title and some new responsibilities this year so I quickly went back to increasing my knowledge on my work. This included a ton of Google Apps hours as well as new equipment installs that were waiting for me due to being gone for 3 weeks in July.
As the computer tech, the majority of my work is done during the summer time in preparation for the new year. This year we would also be taking on a new tech and therefore I would be training someone new as well. This would prove challenging as I was so far behind already. I also struggled to get things to work properly due to network issues which set us back quite a bit and I ended up working 95 hours over 4 days this past labor day weekend to get things in order. I simply cannot let my mind rest if I know others are unprepared or being held back by the technology they possess. And for a teacher... the focus is the beady eyes staring back at you 0.0

Just imagine yourself sitting in front of 30 kids staring at you as you fumble with the projector and try and just get the image on the screen to show up. Or get a doc cam to function properly when needed. I would find it extremely nerve wracking so I take it upon myself to make sure nearly everyone is at or near 100 percent ready to go for the fist day. As the technology has increased this has proven to be very challenging to say the least. Needless to say we were fairly successful and I am thankful for the extra help this year. Especially with all that's going on at the home front. I have also missed several days due to driving to Eugene with Mayleigh for her appointments for the days we feel are necessary for us to be there. It's very few and far between in comparison to what Mayleigh has to deal with but thankfully again we have TransLink to back us up in case she needs a ride. Camille and Ian have filled in as well and overall, with some treatments being able to be administered here in North Bend, it's really not been that bad the last month. She has also been away from cytarabine, a nasty chemo that wasn't allowing her to eat nor feel up to doing anything. I'm not looking forward to it's return which will be right after the new year :\

As my wife mentioned in the previous blog, which was nearly a month ago (sorry folks), Mayleigh has been now taking Erwinase to replace the Peg Asparaginase that sent her into anaphylactic shock.

This is an intramuscular injection that requires 3 shots in the keester 3 times a week for 2 weeks straight. And being that she was behind 3 weeks (no pun intended) once getting the drug, she has needed this chemo every week since. On top of that she still gets Vincristine and Methotrexate in her port and her ommaya still. At least one time a week she gets all 3 kinds of chemo in one sitting. Crazy thing is, you would never know it compared to the one dose of cytarabine.  She has been eating normally (3-4 steaks a week) and starting to hang out with her friends again. She has been night and day difference ever since starting the erwinase and we have noticed a significant change in her demeanor and spirits.
She even felt up to going out on Halloween trick or treating with a couple friends whom have been very supportive of her and definitely bring a smile to her face. We really love to see her turning the corner and starting to wake up from the nightmare that has been her life as of late. Every time she goes to the hospital or drives to Eugene it's never just to go for a checkup or pain free. She is always getting stuck with needles or put in situations that I myself would dread. Especially on a near daily basis. Her life is all about getting better and we couldn't ask for a better attitude when it comes to just dealing with the things you really don't want to hear about. She knows the path to a cure and she does not lose focus. Maybe forgets a pill here and there or to drink water but she's on the appointments.

Speaking of which, her doctor wanted an update since we had missed over 3 weeks getting her started on the erwinase so he ordered a pet scan. We were also very ancie to find out where she was as we had no idea what to expect after having a remission status when leaving OHSU. We were told and forwarned that leukemia likes to hide in nooks and cranny's and therefore that is why she needs so many treatments and for so long. That was again 4 months ago so we were beginning to wonder when we were going to get news "on the inside".

The doctor told us it would be a week before she would get the results and he was going to be on vacation so we pretty much weren't going to receive an answer. Camille was very curious though and dropped a line just to see if perchance we would be hearing sooner and were told that if the PA felt comfortable she would let us know.

In the meantime, Mayleigh's hair continued to thin out and was becoming more or less unmanageable so she figured it was time for a change. We have gone through all kinds of hair do's when it comes to Mayleigh's mop and at this point nothings shocking. I felt compelled to "give up" years ago to avoid the stress of what most find a way to express themselves. Not to mention she was artistic so it seemed to go hand in hand I guess... at least that's what I told myself.

Some were better than others snd I'm sure she would be the first to agree and won't be trimming that direction again... But overall she's done a pretty good job considering she's the one who cuts and trims and twines her way into her new creations. When I heard she was wanting to do a mohawk I was as calm as any parent hearing their child is getting a mohawk and waited for the sheers to do the deed.

I was honestly shocked when she came out. I didn't think for a minute it was going to be a good look but now that I've seen it I like it a lot.
I think it's fitting her nicely and she wears it very well!

She seems stronger and maybe even more determined so I'm happy she did it. With her looking as if she was leaving cancer in her wake, and her feeling better than she had in so long, we were feeling very confident that we were going to get the results we were anticipating and that was a clean bill of health. But as the week began to drift by and no phone call from the doctors office, it was starting to weigh on our minds that the PA may have saw some information she didn't feel comfortable speaking to us about and was waiting on the doctor. It was contradictory though of our true feelings and we continued to wait patiently and hope for the best.
On Thursday, the PA called and spoke with Camille. I waited in the other room so I couldn't hear and as hard as I tried to wait till she was done to get the news it's pretty much impossible when you just know someone so well. All I heard was "fantastic" in her beautiful relieved tone and I new things were on the up and up.
She didn't go into great details but she informed us that there were no new signs of cancer growth but that there were some spleen numbers that she didn't have an answer for but the doctor would cover them on Monday. :D It was just the news we were anticipating! Camille drove to Eugene and the doctor continued to inform her that there was no new signs of cancer growth, all tumors had continued to show no signs of existence and she is still on the road to recovery! HALLELUJAH!

With the world spinning out of control once again on the outside of our 4 walled world, we continue to be extremely thankful for all the love and support we continue to get from everyone around us. People are always asking me first thing they see me "how's Mayleigh?" before anything else and it makes me feel so good knowing people are thinking of her. My role at work has changed dramatically in that I am working more behind the scenes so I'm not seeing my co-workers in the classroom as much and it's definitely hard to get used to. I feel very distant at times and that happiness from solving all their issues has been replaced with keeping things going for our new tech who is continuing to do a great job. It's especially hard though considering all the support they have given me since this began and I haven't had much time to spend with any of them.

Just know that every donation, every thank you, every card, every thinking of you, praying for you , thoughts for you that you have given towards my daughter have never once been forgotten. I appreciate each and every one of you and I know for a fact it is curing my daughter having so many sending their love.
Camille and I both are grateful for all of you and hope that the world can mend just as she has. It's getting very ugly out there but we are the only ones that can repair it. Sometimes I guess you have to go through some bad times to rid ourselves of the cancers of the world. Lets hope that we can find the strength in each other to bring about the change we all need and that's to simply care for one another... no matter who it is.

Even if he's a pumpkin head! :D

The Garden

This is an image that we hung in Mayleigh's hospital room to help her "grow flowers, not weeds"! We have needed to keep this in mind...especial over the last few weeks. Since Mayleigh had a very bad reaction one of the drugs (PEG+Asparaginase); she needed a different drug to replace this one in the protocol. As previously mentioned, the alternative drug is one that makes an intense protocol even more crazy as for every one dose of the PEG...we now need 6 intramuscular injections visits (done every other day) with 3 injections at each visit to replace the PEG. This also requires 6 extra trips 2+ hours each way to get to each appointment in order to get these injections. Determined to do EVERYTHING...we of course were ready to just keep driving and surviving no matter the the size of the hurtle that we keep having to face.  Unfortunately the manufacturers of this drug Erwinase, had their own hurtles to jump. This is a rarely used drug worldwide and therefore the need is great but the demand is not. We were informed that she would be one of only 24 or less patients in the entire USA to need this drug. When it came time to order it, we and  the doctors were ready with the pre-authorization from our insurance for the $19,000 per injection drug (unreal I know) and the research I requested on combining this drug with other chemo drugs (which in my research had shown a possible concern) had also been looked into. The pharmacists & doctors at OHSU reassured us that this combination of drugs should not have a negative reaction. However, we did not anticipate the doctors to call us saying "we cannot get this drug and we don't know when we will"! The manufacture of the drug has had to start over with production and approval from the FDA as it had an issue with the last batch manufactured. We don't know what it means for Mayleigh's cancer as the protocol with these drugs has proven to be quite successful but there is no research known for not having this drug available. Doctors cannot tell us what NOT giving this drug in a timely fashion will be for her. I wouldn't want to give Mayleigh a batch of drug that isn't up to FDA inspection of course but I hated not have this for her as we don't want the cancer to creep back in as we wait. Chemotherapy does reminds me of trying to grow a garden (non organically) as you treat it with horrible chemicals to KILL the WEEDS (cancer) but yet you want your veggies (or flowers) to grow and thrive in this same soil in the future. I would prefer treating the soil with nutrients it needs and pulling out the weeds but since the weeds in Mayleighs garden grew out of control... chemically killing them all is necessary and we will replenish her soil with the nutrients it will need once the weeds are manageable. Since I don't want weeds growing in her mind or ours, we will not help any weeds grow by giving them water (thinking the worst). We will envision her garden flowering with beautiful, healthy blooms of every color and water it only with the intentions to grow flowers. If "weeds" continue to grow...we will pull them up or continue killing them as they sprout knowing we'll see her garden bloom someday!

On Monday we learned that we would again have some "weed control"...the Erwinase was release from the FDA and Mayleigh was one of the first to get this new batch. We drove to Eugene immediately and Mayleigh did very well with the first injection. She is traveling again today to get the second batch plus multiple other chemo drugs to kill all the weeds in her garden! We are behind protocol by several weeks but the doctors feel like we do...that Mayleigh will still "BLOOM"! Thank you again to everyone for your continued thoughts, well wishes and prayers. We are grateful to have so many people ready to help us water Mayleighs garden!!

What Cancer Cannot Do

It has been a long few weeks for our family, especially for Mayleigh of course. We are doing another two week cycle of Cytarabine four days a week for 2 long weeks. This drug has caused havoc to her system and unfortunately it did again. It reduces her red blood cell counts, making her weak and extremely tired. It makes her more nauseous than other drugs and makes it very hard for her to eat. It also causes a fever... which is like walking a very fine tightrope since drug induced fever is not a huge deal but a fever from any other source (even just over 100.4) is an EMERGENCY since it could be life threatening. She had to go the ER again (where she is exposed to even more germs) just to make sure it isn't a bacterial fever. Thankfully it didn't grow out anything and we feel certain that this was again, a drug induced fever. We had to find articles about this drug and the fever side effects to ease her doctors mind as he wanted to consider a surgery to remove her port incase it was infected and insert a PICC line. Mayleigh stood up for herself to the doctor, reminding him that at the last exposure to Cytarabine ended with her in the hospital with the same exact symptoms with no found infection anywhere again. She wasn't about to "jump the gun" to remove her port just yet and I am proud of her for learning that it is OK to question her doctors. The doc agreed to wait until she was done with this drug cycle to see what happened. Sure enough within less than a day of stopping, her fevers went away. She did require another transfusion (which we all expected) resulting in some color coming back to her cheeks, she was hungry for one of Dad's amazing smoked steaks with a side of his golden potatoes and her spunky personality came back to. Mayleigh continues to prove what a strong young lady she is! While cancer has caused our family a lot of stress...we refuse to let it consume us with fear or anger. Instead we grow closer, love each other more, appreciate the small things and value what we do have... remission, optimism and faith! So cancer... you are limited!

Mayleigh may not fully realize how amazing her soul's growth is just yet, but just like this rock blocks the path leading to the light this seed needs to thrive; the seed didn't know that it would eventually break through the soil to feel sunrays that will allow it to grow! She has strong roots that we will continue to water... knowing that someday we will witness her flowering! Larry and I are so proud of her determination and willingness to keep doing everything required to continued kicking cancer's ass. It will take this strength as the next few weeks, months, years of her continued treatments aren't going to be easier. She now requires 18 intramuscular injections over the next two weeks, then again many times in the future (since she was allergic to the IV form of asparaginase). This doesn't count all the other chemo treatments to work around these injections. This protocol is difficult but has proven effective... so it's a good thing she has a strong and very stubborn spirit that will allow her roots to grow deeper while we wait till she can bloom!!

Lastly I would like to thank Mayleigh and Ian for their love and support towards Larry and I through this as well. She realizes that the burden of this treatment weighs heavy on us all and that as her mom (with health issues also); needs to recover for the added stresses in order to continue holding some of the weight. Larry and I had made reservations clear back in the spring to camp in September at one of our favorite places to be in the world...the Redwoods! We had never gotten to camp at Jedediah Smith State Park and while we struggled with the idea to go while Mayleigh wasn't feeling very well, she encouraged us to go. Ian was with Mayleigh and we were only a few hours away if needing to come back, so off we went. Thankfully we found some respite in the Redwood forest and I felt my strength come back just being there for a break. It is indescribable the peaceful serenity that Larry and I feel everytime we walk through the mystical groves of the Redwoods. It is impossible to capture the size and beauty of these trees. Redwoods survive through thousands of years by intertwining their roots so that when one tree is under stress, it can still survive through accepting the nutrients it needs from the other trees. Our family doing the same...growing roots to support each other so we can all survive and thrive!!

The "Step n' Slide" Effect

Ever climb a sand dune?? It is a series of stepping up just to slide down, step up more and slide again. Progress, but slow, hard progress. This feels like our lives right now...exhausting! Mayleigh and I went to see Dr Sharman in Eugene yesterday for labs, chemo and a talk about options since Mayleigh had such a bad allergic reaction to the last chemotherapy drug that landed her in the ER. He started with the good news first that we CAN work with our local oncologist to have 3 of the four treatments needed (during SOME of the consolidation therapy protocol) each week in our area. We were then informed that there is another drug substitute needed to replace the drug she's allergic to. It however, will require 6 treatment doses for every one dose of the drug she's allergic to and that this drug is EXTREMELY rare so we need to do infusions of it in Eugene. So, we are required to follow an INSANE protocol to treat her A.L.L cancer & add in an INSANE number of additional treatments due to allergy; then throw in traveling for more than 2 hours each way for most treatments...that's enough stress for anyone right? Then we add in that Dr. Sharman MD in Eugene is required to work with Dr. Latan MD up at OHSU in Portland...who is now required to work with Dr. Cook MD (local doc) in order to get the 3 out of 4 treatments locally (sounds great right??) but after hours of phone calls later to determine who is overseeing the insurance coverage/pre-authorizations, who is liable for the treatment at which location, who is in charge of making sure the orders for the Outpatient infusion center got the drugs needed and that the schedule for all doctors, clincs, rides, insurance pre-authorization and patient is ready in order for that all to happen? That's right...ME!

This ladys expression is how I'm feeling right now. As I continue to figure this all out, organize and argue with doctors, clinics, hospitals, insurance and making sure there are rides to and from each appointment...my heart aches thinking of anyone who doesn't have a feisty advocate (momma bear) to jump the hoops to ensure the treatment protocol is even being followed. Cancer patients who require this kind of treatments have enough to stress over and "chemo-brain" (as Mayleigh calls it) & should NOT have to do what the staff SHOULD be doing. That and it is they who also get paid good money from us and our insurance to do their job!! Being that I have a full time job as momma bear and a more than full time job running my company Framehuggers...along with a part time volunteer job as the VP of our diabetes association (while living/treating my own type one diabetes) and trying to move Mayleigh, Ian and 2 Chinilla's, 2 Guinea Pigs and a hedgehog into out home...well lets just say I may need some prayers for my sanity please :)

As we aim our arrow ultimately at our goal; we will have to accept that the slip in our steps is not setting us back; but is instead a force of energy behind every struggle that will propel us to hit that target dead center! I'd like to thank my incredible husband who has dedicated this entire last "holiday" weekend at the school district (as he's been the ONLY computer technician for the last 8+ years) working from early morning till after midnight, trying to play catch up on what should have been a relaxing 5 day break before school started. He had to transport and unbox new computers, update and or install software on every computer,install all smartboard & projectors, update websites (mine and schools), start training a new computer tech (yea but more work to train), educating himself to pass tests required to become a Google Certified Trainer so he can educate teachers....all this just to come home & hear my woes. He is my rock and helps me keep/find my sanity in his loving arms and listening ears (sorry I make your ears hurt). You hold me up Larry Workman (along with an entier school district) and you should get Man of the Year award in my book!!!

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!!!

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