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!