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!