No Turning Back

As the co-workers exit the buildings for summer break, I can't help but be envious when hearing the chatter of vacations and all the fun things that abound when you have the whole summer to enjoy with your friends and family. As the schools computer technician, I always call the last month of school the calm before the storm. Normally the tech needs slow down and as soon as students and faculty are gone, I am hitting the ground running getting everything ready for the next school year.

I have become accustomed to this and have never had a summer off; except for one time when I was in transition from working at ESD and being hired on with the school district. It was nice, but under the circumstances of being jobless and Camille & Mayleigh not getting to be with me as I visited family in Montana, it quickly became miserable taking a vacation without them. All I wanted to do was go home and before I knew it, the summer was over.
Another reason for feelings of envy is that for the 2nd summer in a row we will be heading to OHSU to spend close to another month in the hospital as our daughter undergoes an Allogeniec Stem Cell Transplant. I am sure no one dislikes this situation more than Mayleigh so please do not feel sorry for us. I can't imagine what is going through her mind as she prepares herself for the battle that is to come. The fears and anxieties have consumed us all but our poor daughter has many meds and chemo to deal with on top of it all. Not to mention she has had to go up to OHSU twice already to sign all the paper work and move forward with the procedure as well as attend a class on what to expect after leaving the hospital. She also had a bone marrow biopsy today and is being fitted for a lung guard tomorrow to protect her during radiation treatment. They will then return home on Friday and have one week before needing to return to start the radiation process. Her life has become nothing short of a voodoo doll filled with pin pricks and needles, mixed with sitting in waiting rooms and doctors offices. I cannot wait for the day that she can be free of all of this and get her life back. That time is now upon us and at this point.. there is no turning back. A bone marrow transplant is about to save her life!

On July 17th, Mayleigh will be admitted to  OHSU where she will undergo a procedure to install a Hickman Line. This supplies a main line to the heart for administering the stem cells, chemo and any other drugs needed. This will be her 3rd port she will have installed. We have also learned that the Ommaya Reservoir will never come out of her brain either...something we were never told when making the decision to have the procedure. Mayleigh has again not let it affect her and said her hair will grow over it so whatevs... :D 

On July 18th thru the 21st she will have full body radiation in which the hopes are to kill off her immune system and prepare it for the new stem cells the following week. After 4 straight days of radiation 2 times a day, she will undergo 2 days of intensive chemotherapy in which they again are attempting to annihilate her system. She will then have 2 days rest unless the stem cells show up early then she will only have one day.

Mayleigh's "Re-Birthday" is scheduled for July 26th (25th if cells arrive early) in which they will take the stem cells from a healthy, American, male donor that is a 9/10 match. This is all the information we know of the donor at this point other than a 10/10 would of been preferred but due to Mayleigh having a unique gene, she mostly likely would never find a 10/10 match. We are happy with the 9/10 to be honest and from what the doctor has said, she matches the most significant and important markers and therefore he feels it should make for a smooth transition. The process is as simple as a blood transfusion so once the stem cells arrive, they will attach it to her IV and administer through the hickman line. I've heard the whole process is very quick and painless as compared to the past. Even the donor has it much easier as they no longer have to do a bone marrow aspiration to harvest the stem cells.

In my opinion EVERYONE should be a mandatory donor at this point. Cancers are prevalent in every one of our lives and it would only increase the potential number of matches those in need would have to choose from. If this is something you are interested in you can easily sign up at http://www.bethematch.org and you can save someone's life today! I really hope we have a chance to meet this individual as he probably has no clue how much we appreciate his generosity and selflessness as he secretly saves our daughters life. You couldn't possibly give a greater gift and we are extremely humbled by the opportunity to find a match somewhere on this giant rock that could potentially end her battle with cancer forever!

Camille and I will be taking her to Portland for the beginning phase. We will be there the week she gets radiation as well as the transplant week. We really have no idea what to expect other than what we read from others in the ALL Facebook groups and transplant groups that we frequent. There are risks and rewards all over the board and ugliness that we can only hope to avoid. One of the biggest scares is GVHD or Graft Versus Host Disease. Symptoms can include:

• Rashes, which include burning and redness, that erupt on the palms or soles and may spread to the trunk and eventually to the entire body
• Blistering, causing the exposed skin surface to flake off in severe cases
• Nausea, vomiting, abdominal cramps, diarrhea and loss of appetite, which can indicate that the gastrointestinal (digestive) tract is affected
• Jaundice, or a yellowing of the skin, which can indicate that your liver is damaged
• Excessive dryness of the mouth and throat, leading to ulcers
• Dryness of the lungs, vagina and other surfaces

GVHD can be acute or chronic. Its severity depends on the differences in tissue type between patient and donor. The older the patient, the more frequent and serious the reaction may be. In most cases the odds are in her favor due to age, where she's at in her treatment, and how well of a match she has. She's young, she has very little disease present, and she has a good donor match. We again are trying to avoid letting our minds wander but there is definitely a million and one things that can go wrong. Mayleigh is staying as strong and courageous as ever though and we could not be more proud of her when facing a life or death decision such as this. So many things have aligned for all of us to get us where we are. Between our families, the school district, Ian and all the doctors and nurses involved; it truly takes a team to make something as ugly as cancer go away forever and there is no reason to believe she will have any other outcome but success.

Once OHSU feels she is healthy enough to be released, Ian will take over and will become her full time caregiver. He will have a ton of responsibility when it comes to the health and well being of Mayleigh. He will also have to quit his job to move to Portland to be with her so there is additional stress from finances and change from our tiny little town to the big city. He will have much help from our generous Aunt and Uncle, (Michael & Kathryn Becker) who have opened their doors to both of them to stay, including Camille & I when needed. We don't know what we would do without their help and we are forever indebted to them for their generosity. Thank you so much Michael & Kathryn!!! <3

We have also found out that my mother has taken a job in the Portland area for 3 months to also be close by. This makes us feel even better knowing there is another set of hands to give Ian breaks from time to time. She also works in the medical field so it's nice to have her questions and input when speaking with the doctors. Needless to say, Camille and I will have to continue to work around our schedules to be able to find time to come visit. She will be required to stay in the Portland area for at least 100 days after she is released for checkups and appointments. With all things going well, she could be home by Christmas. We are trying to keep the faith that everything has gone smoothly for us so far so why worry now...everything has fallen into place just like it normally has when things were meant to be and she damn well deserves a 2nd chance at life and to be cancer free. No parent can fully enjoy life when their child is living a nightmare such as cancer. It's a constant stress and worry that never goes away no matter what time of day it is. We are confident that day is nearing us sooner than anticipated. :)

This past week we took a little 4th of July camping excursion, the first of the year no less, as we feel we needed just one last get away before we gear up for our next adventure. Mayleigh and her friend Cassondra came up and stayed with us for a night; then Mayleigh returned for 2 additional nights with a surprise visit from my mom. We had an awesome time and it's always hard to leave but it was even harder this time knowing what we have in store for us. There's something about camping that just soothes my mind and soul and I've often thought that I could easily survive in the woods and put our technologies aside. I'm sure it would get tiresome but a week just doesn't last as long as you'd like when your in a state of zen.

We again thank each and every one of you that has sent a prayer, or a thought, or a positive vibe Mayleigh's way. We need them now more than ever as she prepares for the fight of her life. We would also appreciate any cards or letters of encouragement as she is in the hospital. We do not yet know what room she will be in but I'm sure if you send it to: OHSU C/O Mayleigh Workman, 14K Knight Cancer Institute, 3181 SW Sam Jackson Park Road, Portland, OR 97239-3098. Sending anytime in the week of the 17th is best. She'll be there 3 weeks and it takes about a week to get to her room.
If all things go well she will be released on August 4th which is 2 days before the World Footbag Championships in which I plan to compete in with all things going as planned. I continue to practice as much as I can so I am preparing as if it's a done deal. She is going to beat cancer and I am going to be the oldest routine champion in footbag history! :D I would just take Mayleigh beating cancer... there will be no greater feeling in the world to know that our baby girl is done with this chapter of her life and she can go on to adulting and stop having mom and dad all up in her business. :D

Mayleigh's Shrek mask :D

We do love the togetherness though and if for anything, through all of this, it has given me more time to get to know her and appreciate her the way she should be appreciated. She is one of the most loving, generous and caring friends one could ever have and I just want to see her surrounded by love cause that is what she brings to every one around her. Your beyond inspiring Mayleigh; your our greatest creation and we couldn't be more proud of how strong you have been through all of this. <3

Bears are in the Woods

Just trying to write words to share with others since our last post, has been incredibly difficult and overwhelming to say the least. It is impossible to put into words the emotions we are feeling as the news from doctors leaves more questions than answers. As we all celebrated our last good news of remission status...the ugly shadows of cancer still linger in the dark trying to sneak out and block the sunlight shining on us. It is confusing as we are told Mayleigh is technically in remission if we only go off of the testing that has been used for many years. However, there is a new test available within just the last few months that were ran and in this test they found some residual cells that couldn't be found without this special new testing. As many of you know from my writing, I love analogies to describe my feelings and this time the doctor gave us a perfect analogy to help us understand the conflicting lab results. The doctor explained it like this... current testing is like someone handing you a small flashing to shine through complete darkness and being asked to find bears in the woods at night. You shine it all around and you don't see any bears so you feel safe. The new testing is like someone then handing you a huge bright lantern. You look around and see bears ARE in the woods...ya just couldn't see them with the flash light. So the "lantern" of her test is showing 5 out of a million cells are leukemia cells. So while we are "in remission"  with the flashlight and maybe safe from "the bears" that lingered in the woods (due to chemotherapy treatments) these bears can and will likely attack sometime in the future  unless we try killing them all and try moving to a new campground. Thus we were sent to the bone marrow transplant specialist at OHSU for discussion of what to do with these damn bears.

In late May, Mayleigh had a consultation with the OHSU doctors to discuss what to do with the new test results. Without the brighter lantern that found the residual leukemia cells; we'd just be celebrating a little more relaxed and continue maintenance therapy. While were are grateful to have newer tests that may help us determine the best long term outcome, it also creates a whole lot of questions with little answers. What to do with this information from the new testing is the question. There isn't a lot of statistics to go off of since this test is so new. T-cell leukemia is a very aggressive form of leukemia.... those 5 cells COULD do a lot of damage quickly if they stop reacting to the chemotherapy. She is still in remission but she has to be in order to have a stem cell transplant. If we wanted to wait this out and only keep giving her chemo treatments....there is about a 65% chance of the cancer coming back sometime in the future and if that occurred, the chemo would be less effective. If she couldn't get back into a remission again; we'd NOT be able to have a transplant. However, there are a LOT of risks to do a transplant but also a lot of reward. So it leaves a lot of questions as she could have a 5, 10, 15, 20+ year in remission without those few cells causing any issue but we would alway have that nagging knowing that "the damn bears are still living in Mayleigh's campground". So, do you take the risks associated with transplant right now which could save her life in the long run... but put her life at risk immediately or do you try to enjoy the remission status as long as you can and hope she'd be in the 35% that can live a very long life without these residual cells coming back? No one can tell us what is best and ultimately it isn't up to us; it is up to Mayleigh. Fear can set into each of us differently. What anyone would chose to do if given this difficult decision may vary since it feels like flipping a coin. Mayleigh however, is one of the most fearless and incredibly strong young ladies you may ever know in your lifetime. Without hesitation, she is ready to kill the bears and create a new campground within her body, so she doesn't have to fear them as much in the future.


For our extended families, friends and ourselves as her parents; we may at times let panic and fear fester as we question the right path....ultimately our thoughts and opinions don't matter. We ALL will love and support Mayleigh's choice 100% and I couldn't be prouder of her strength and her continued determination to continue fighting. She gives me strength knowing that she is the most stubborn and determined young lady I have ever know. Once her mind is set...she doesn't EVER waiver. Bit of honesty...this can also drive me crazy as her mom if I want her to be flexible and open to discuss other life choices (outside of cancer that is) but for this treatment...I am very happy that her stubborn side isn't allowing for any wishy-washy mindset and this is why she will beat this! As a loved one looking in, it is incredibly hard since we have no control over what happens. As a parent to a young adult, it is overwhelming to let go of what we cannot control. Every parent has fear of the mindset of their own young adult children and the choices they have to make to have a bright future. We have all looked back on choices we made at 21 and feel grateful that while some choices were dumb, we survived and learned from them. However no child/young adult should have to make a life choice like this. No parent should have to watch their child go through a year of hell, only to find out that all the efforts weren't working well enough. So.all we can do is to let go of trying to control something that is out of our hands and continue loving her, supporting her, holding onto faith... with hope to grow spiritually and physically stronger. That this in the end this is not all for not; but for something greater to learn from the struggles we faced and continue to grow closer, stronger and better despite it all.

Mayleigh was able to take a great break in her tough chemotherapy regimens, as we have finally been able to move onto the maintenance phase of her treatment. This allows for many pills to be taken during the day but only one chemo treatment that had to be done in clinic. Her amazing grandma Marie Hawkins (Larry's mom) has been a great support to us from the first report of her diagnosis and throughout this last year. She's paid for hotel rooms and sent presents and of course lots of love. It has been hard on her to be 9+ hours away from us not knowing how to help. So when Mayleigh had her consultation for OHSU; Grandma Marie took time off her work as a Physician's Assistant to be there. She then gave Mayleigh many days of fun in Portland before heading to Boise, Idaho with her. Mayleigh was able to spend 3 weeks there getting spoiled everyday....THANK YOU Grandma Marie...we all are grateful for everything you did!!! We know this has been tough so we couldn't be happier that you got to spend much needed time with your granddaughter. We love you <3

HEART FOR HER NEW HENNA  HEAD TATTOO ;)

My mom was also able to take her to see my family in Utah for a few days; THANK YOU Grandma Shelley! Mayleigh got to go to a farm to pet animals (one of her favorites) and to go to Lagoon amusement park (thanks aunt Richele)! She of course bravely rode every scary ride there and had a blast! While there, she got a henna tattoo on her head and a young lady (who didn't even know Mayleigh) insisted on paying for the cool henna art now displayed on her head. It was very sweet and touching for Mayleigh. She'd wanted to get a henna for a while and love even from strangers is amazing!

THANK YOU also to aunts and uncles: Richele & Lori & Martin, Glen & Trisha....and her cousins Megan, Carson, Matthew, Zachary and Tessica. It means a lot to see Mayleigh have such a great time! We didn't even hear from her much the whole trip because she was likely sick of us old folk parents lol; that and she was having too great a time! It was hard for her to be away from her fiance Ian so thank you to him also for being supportive and working while Mayleigh spent a few weeks having fun with our families.

You all did a lot for Mayleigh. Wished that Larry and I could have taken 3 weeks to play...dang bills gotta get paid. It was hard to be away from Mayleigh on Mother's Day this year....but as her mom I couldn't have wanted anything more than for her to be having a fun time and I got what I wanted!! Lastly I would love to share the something that Mayleigh wrote.

Cancer sucks ass
BUT

it has taught me inner strength and to take nothing for granted

My mouth tastes gross during high levels of chemo and radiation
BUT
I'm lucky to not have mouth sores and extreme nausea

My stomach hurts A LOT
BUT
I have access to an understanding doctor and pain controlling medications.

I have neuropathy caused by chemo
BUT
I can manage it with little side effects thanks to modern medicine

I am tired all the time and require a lot of sleep
BUT
I have loving parents and a fiance who take care of most of my needs and let me sleep when I need it

I don't receive very much disability money
BUT
My parents generously let me and my fiance live with them in their large accommodating house for very little. And I did not have to prove/ fight the government on whether I actually had a disability.

The steroids make me feel like crap and have high blood sugars
BUT
They are a vital part of killing leukemia and they help keep my blood counts up

After 8 months of chemo and 12 doses of radiation I may still need a bone marrow transplant
BUT
The outcome of said transplant in my favor for being a primary European decent, young, female

The amount of money and time in the hospital is outrageous!
BUT
I have double coverage insurance so I don't have to worries about most medical expenses

People pity me when I say I have cancer
BUT
It means they will be sending positive thoughts my way which is only a good thing

Cancer is fxxking hard!
BUT
I always say “But hey! At Least I'm still alive and fighting!”

And now you all can see and know why I am so proud....an attitude of gratitude is something I have always tried to instill in her heart. Even as she is going through so much....there it is; GRATITUDE!!

Please continue to keep Mayleigh and our family in your hearts and prayers. We are very grateful to have the support. We'll have some tough roads ahead but knowing others care does ease some of the burdens we have at this time. Thank you all for reading and caring!!

So long consolidation, hello maintenance

I'm sure we've all gone through those times in our lives where you feel you didn't do your best, didn't give it your all, or simply failed to reach the mark.
You've probably also experienced the dread of something bad about to happen or maybe it was a nightmare that seemed all to real to shake the next day. Whatever the reasons are, sometimes a doom and gloom attitude consumes you and with every shred of your being, you can't help but believe your clairvoyance has given you a glimpse of the future, allowing you to know exactly what is to come. You can either stop this insatiable feeling from becoming a reality or roll the dice and let things play out on their own.



With that being said, the past couple weeks have probably been the most stressful 2 week span since our daughter was diagnosed. As most of you know, we feel a positive minded focus is crucial to the success of her treatment. We always try and do our best, when given certain information, to take time to process and try not to let the numbers get in the way of our thoughts and end game.
But having a prolonged period of  time to let your thoughts wander and to become pessimistic is very easy to do when your used to a routine and in the know. This would prove to not be the case the past few weeks and for the first time we definitely became concerned with Mayleigh's condition and where she is at. Especially with a doctor that is MIA every other week.

It had been nearly 4 months since we last had any testing done as to the whereabouts of cancers existence. The last bone marrow aspiration in early December was clean other than some residual cells that were later deemed inconclusive on a 2nd test. This result alone planted some seeds of doubt as we were under the impression after leaving OHSU that she was 100% in remission with no residual anything. Needless to say we were assured after the second test that she was still in remission and there was nothing to worry about.

Since our last post, Mayleigh has gone through several different phases in her treatment, all of which have been under phase 2 or the consolidation phase. She would need to complete 3 more months of a more intense regimen and receive another remission status on her bone marrow aspiration to move into the maintenance phase.

First off was the dreaded cytarabine chemo that induces fever and makes her nauseous. She would have 2 weeks of this treatment along side vincristine and methotrexate. This time around was not so bad. She only had to have one blood transfusion and overall I think she would agree she wasn't feeling as horrible as the first time.
Next she had several rounds of erwinase which seems to also have had little to no side effects. The biggest side effect of all of them though is lack of energy as your system is being completely rebooted. Other side effects have been numbness in her feet, cheeks and finger tips caused from the vincristine. Overall I would consider the treatments a complete success when it comes to the sickness and or nausea. From what you've heard and or probably have seen from treatments in the past, they have done a great job with the anti nausea medications and even with a treatment as intense as hers it's been mild at times when dealing with this aspect.

One thing that we've been told from the very beginning after finding out that cancer was not present in her spinal fluid was that there would be no radiation. This would prove false as we entered March. For no other reason than preventative, they have brain radiation on her regimen as leukemia likes to hide and one of their favorite hiding spots is the brain. I don't know why but I just have a hard time with this as it seems to be more harmful than the chemo that she has been getting. Even though the chemo  is running through her veins and through her heart, it seems to be a more intense of a treatment in my eyes when you bring the brain into play. Mostly due to the fact that it could have very severe impacts  when pertaining to your memory and thought process. We were not happy to say the least and were very critical of this treatment.

Plastic mesh mold to keep patient still

The doctors reassured us that everything would be fine and that all along she was destined for this to happen and not to worry. The doses were small compared to other regimen's but it would be 2 solid weeks of cranial radiation and with a continued remission status, she would not have to have it again.
The process is fairly quick with most treatments only lasting a half hour. Most the time was getting her aligned correctly using this plastic mold made specifically for the patient to keep them as still as possible. Once again I probably would have a panic attack being bolted down with this contraption covering me but Mayleigh powered right through like a champ. She's definitely surprised me at how mentally strong she has been through all of this. In the beginning it was constant miss when it came to blood work or they needed to do the procedure again because it didn't work the first time. Through it all she never complains and stays the course. Something I'm sure would be extremely difficult had she been younger. I couldn't imagine going through this with an infant or a child that doesn't understand what is happening to them or worse yet, one that does not want to comply. We are blessed to have not only the treatments working well with her, but she has been working well with the treatment. We could not be happier with her attitude when it comes to her facing this head on. It's as if she's prepared for this fight her whole life and is knocking cancer out in the first round. It's truly miraculous when we stop to think about how quickly this progressed; but even better how quickly it was suppressed.

Having family and friends letting you know they are thinking about our daughter is definitely one of my highlights when speaking to others. I never seem to go a day without someone at work or someone I know asking about her status, including my wife and how she has been fairing. It's always a great feeling to know people are thinking of you and your family and that is because no matter who you are, no matter how you were raised; the one thing that makes everyone's world go round is love. That is all that truly matters in life and the one thing you can take with you anywhere.
Mayleigh was able to spend some time with her grandmother, whom she hadn't see in a couple years this past month. It was good to see her and I know for Mayleigh it was a nice surprise as she had never seen our home or been able to spend any time here with us. We were able to take her to Sunset Beach and show her and her partner Larry the sights and they treated us to a nice dinner at Ciccarelli's (THANK YOU! :D). We do not get much family time these days so I'm happy when we can see some familiar faces.
With the weather being as it is, it has kept us indoors much more than we would like. We are used to going to Sunset and having a campfire and cooking up some good eats but this season has been unusually wet. So much so that it's becoming quite irritating and disastrous when pertaining to my waste line. I can usually get in my footbag workouts but with out even a day's rest in between storms it's been a complete lock-down when getting outside.

Thankfully we were able to get down to Sunset Beach a couple weeks ago and enjoyed a nice dinner. We had some T-bones I grilled over the campfire and Mayleigh sported her blonde wig for the occasion. We even had a decent sunset considering the incoming storm was rolling in on the horizon. We were getting very ancy to get the results back from her bone marrow aspiration which was done right at the end of February. We normally would have had results back by now but it was already mid March and still nothing. With each day we grew increasingly worried and wondered what could be the reasoning behind the delay.

Mayleigh continued as if she already knew the results and was not concerned in the slightest. But after about the 3rd week I think it was weighing heavy on all our minds including Ian. The doctor had submitted a request for an appointment in the meantime and this raised more concern as they didn't have any results but he wanted to see us the first week of April.

By the fourth week of march we finally received the preliminary results back. No cancer.... BUT...
The but was a 12% recognition of some type of mutation of her DNA called tetraploidy. It was not conclusive and we had again no communication from her doctor about this so we of course called up Dr. Google to see what we could find. Unfortunately this is something that is not good news in the slightest. This is where your darker worst nightmares feel like they are coming true and it becomes easy to imagine the worst. The part that weighed the most heavy on us was the following results:
FISH was performed using a chromosome 9 probe set, as listed below. Results were within normal limits with no evidence for the previous abnormal signal pattern.
*Please note: ~12% of cells had four signals for both probes, suggesting tetraploidy. The significance of this finding is unclear, but it may represent effects of treatment; please interpret within the context of clinical and other laboratory findings.

I immediately sent it off to be analyzed by momma MD to get her take on this. After speaking with her about it and then her speaking with another doctor, we came to the conclusion that it was nothing to worry ourselves over and to just relax. There is always a margin of error as well as it being such a low percentage. Even though we had the initial reading telling us there was no cancer in her bone marrow, we still couldn't be completely satisfied until we received the full report from Seattle. This one had the final results that we were needing to feel 100% sure she was still in remission and no kind of hoidy ploidy going on.

On March 29th, we would have to wait no more. Mayleigh received a phone call that morning and was given the following results:

Bone marrow aspirate, biopsy and clot:
- Normocellular marrow (60% cellularity (that's normal)) with Trilineage hematopoiesis and multilineage dysplasia
- Negative for residual acute leukemia
See Comment

Comment:  No evidence of minimal residual T-lymphoblastic leukemia is
identified (analytic sensitivity 0.01%). D

This was the best news ever!!! Not only did she not have any signs of acute leukemia but there wasn't even any residual present. All our worry had been for nothing. Not that we let it consume us but it's the first time that we were hesitant on our feelings towards things working out in our favor. Everything continues to be like clockwork and ultimately working out in the way it should. To have something like this rock our boat was definitely concerning though and I won't forget the feeling of not being in control and thinking for the first time that maybe this won't be so easy after all....

Tomorrow we see the doctor for the first time in over a month. Mayleigh has completed her radiation treatments and as promised, her hair has completely fallen out as of April 2nd. She remarked that she feels like she has more energy though and we are so happy to have this chapter out of our lives. Ian has also recently passed his CNA test and is now officially certified (Congrats IAN!!!).  Hopefully Dr. Sharman gives us the green light for maintenance phase and we can continue down this path that only has one destination in our wake and that is consistent remission and a 100% cure.
She deserves to have a normal life and enjoy the things most 20 year old's do. To strip away her youth like this is beyond excruciating considering how fortunate I was at her age.

I know in time it will seem like this was all a bad dream. One that had every emotion imaginable. But the one thing I can always count on is the strength and courage of our daughter and how she has never wavered when facing this battle. To know that we may not always get the greatest news, but we will always have an amazing, loving, beautiful daughter that knows without a doubt; that cancer is going down for the count!

Good Riddance 2016!

As many of you have probably noticed, 2016 did not bode well in the fond memory category for many Americans. For our family we couldn't agree more that this was probably one of the worst years on record when it comes to bad news received.
It's hard to believe it's already been nearly a year when Mayleigh started seeing signs of change in her health. Although it took till about April for her to come to us with concerns, she was noticing some light symptoms even as early as March of last year. For what it's worth, she could have already had her first cells growing inside her as early as this same time last year which is just mind boggling to think about. Time seemed to stand still for the 3 months it took to try and find the answers to her issues and since her diagnosis, it's been a whirl wind of blurring weeks and months.

To say that our lives have changed would be an understatement. Each one of us have sacrificed in some way to make the accommodations and living space work to our specific needs. For both sides there has been give and take, forced change and uncomfortable moments.
Any time ones personal space becomes a shared space, you can be sure that there will be some conflict of interest. Having previous freedoms and familiarity altered to fit the requirements of another is sure to bring about some form of emotion and or frustration. Anyone who has had a roommate can most likely relate to this change of space. Even if it is family; to go for a period of time with a particular regimen then be thrust into indifference of habit is bound to bring a level of sighs and head shaking.
While problematic this can become, lack of communication is usually the culprit when it comes to long term issues such as this and by being able to discuss these issues and potential conflicts we are able to have a cohesive, respectful relationship that has benefited us all greatly. I think everyone has their moments of needing space, trust and comforts but it takes an invested interest in each other to make it work. We love Ian and Mayleigh so much we will do anything to make sure their future is a success and that includes providing them a stress free environment that does not worry about cancer cause like I've said from the beginning.. losing is not an option.


I'm not sure when it all began. When the changing of a year started coming with a reset button. To turn the wrongs to right, to lose what you have gained, to get back to the way things used to be. Even though we all grow in some way or another (sometimes sideways unfortunately :P), it seems as if most would like to turn back the clocks and forget about it all; including positive events that may far supersede any of the negative that may have occurred.
Why is it that people often tend to cling to the negative moments of life? Considering they hypnotize us into disliking ourselves by creating anxiety's, paranoia and lack of confidence it would seem like an obvious choice to stray away from these pitfalls.  I myself have thought many times that I'm good enough, I'm smart enough and dog gonnit... people like me!.. yet I still question, contemplate and fear for lack of acceptance foremost when it comes to my thought process. Many times I overanalyze and worry for no reason other than I can't shut my brain down and take a break from beating myself up. I am by far my worst critic and will find ways to knock myself down or make sure there is no pedestal beneath me. I do feel I am humble in most cases and never want to feel over confident or even arrogant. Yet there is a fine line between those two words. If only there was an easy way to boost pride without effecting ego...there's probably a pill for it I'm sure. Regardless, I know I am not alone in hearing a doctor tell you to avoid stress, anxiety, something about coffee and other words I can't recall. But how is it that we have created so many things that have simplified our lives yet our panic is through the roof? I've heard of more people having panic attacks in the past 10 years than I ever did in the prior 20. I'm not even sure I knew what a panic attack was until my early 20's. Now, nearly everyone has either suffered through one or know's somebody that deals with them on a regular basis. And even if it's not panic, people are dealing with anxieties in other ways too such as misophonia . thanatophobia or even worse novinophobia.

Alas my point for all this rhetoric...(or am I  just being long winded and should shut my trap? arghh... the struggle is real folks! )

Even though one of the most horrific things we could ever think to happen has effected our lives, we are continuing our journey on a perfectly paved road that no one has traveled upon. We are in control of our vessel and nobody is going to take away the good that has come about through all of this. We may forget those moments easier or find a way to replace it with pessimism but ultimately the things we need to focus on are #1 making sure Mayleigh and Ian are provided for and #2 we beat cancer.

I am going to try extra hard this year to let go of the worry over things that truly do not matter. If I had a reset button I would only use it to change my negativity into positive thought and appreciation. To be thankful for every moment I have with my family and raise them up every chance I can get. I apologize for not loving more but I will most definitely be changing my tune in 2017. I love you guy's with all my heart and am hungry for the change in all of us!!! 

Mayleigh continues to be in remission after getting another bone marrow aspiration and was able to take somewhat of a break off from the multiple chemos this past couple weeks. She is preparing for another round of cytarabine though and we are not looking forward to this as it's been a bit rough on her blood counts. We've all been sharing a very nasty cold as well but thankfully Mayleigh's counts are actually doing very well at the moment due to again no chemo. We will provide another update as soon as we get into this next protocol but so far so good! Thank you again for all the well wishes, thoughts and prayers this year. We cannot say it enough that we are blessed beyond our means with love and support!!! <3

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!!