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