Update on Ally & next phase in her journey…

On Tuesday April 23rd Ally had her 1st clinic appointment since being on the DFMO maintenance protocol. She gave a urine sample, blood work, took the first dose of DFMO & mommy signed papers for this new phase in her journey.
{DFMO is short for a very long word—Difluoromethylornithine}. The DFMO is a pill form and because of her weight she is required to take 7 pills a day—4 in the AM before school, followed by Etopisde at 5pm and lastly another 3 pills between 7 & 8pm—{this daily amount of pills will likely increase as she grows & hopefully gains weight!}
Ally will be on this new maintenance protocol for 2 years (or 730 days). Each cycle is 21 days long, and for the first 6 cycles she will have to take Etopiside (another liquid chemo drug) along with the DFMO.

Only a handful of people have seen Ally take her other pills which were the size of a mini M&M. As well as how during  57 cycles {or 57 months!} of RIST therapy she would cry and fuss making the process take so much longer than necessary.—I couldn’t crush, half, mix or touch those pills, she swallowed them!!
WELL…..these pills happen to be a bit bigger and are the size of a regular M&M, they are dry and uncoated. The first few days swallowing these were very difficult I’m not gonna lie, and there were lots and lots of tears and gagging. However, the benefit to these are I can touch them, crush them and mix them in a select few items making them easier to get down. So far a small amount of applesauce has done the trick mixed with the crushed powder of pills.
Her medication list has changed significantly as well,  and she has a lot fewer to take because of this🙌🏻!

My next BIG prayer is for her to no longer need the NG Tube!!! 
Not only is this thing uncomfortable, but it creates sores at the corner of her nose due to constant rubbing as well as her cheeks get raw from the stickers/cleaning products while changing the dressing.

A couple things need to happen before that can just go away.
1. Ally needs to maintain her weight on her own without supplemental feeds!(eating!!!)
2. Stay hydrated (drinking!!)
—both of these happen to be a struggle— 
3. Lastly she HAS to be able to take ALL her meds by mouth….which is also a struggle!
Even though I know all of these things, I believe Ally along with God’s help….can do this miracle too after everything else He has brought her through!
Please join me in praying BIG again for Ally!!

In some ways I believe that over the coarse of 6 years this tube has become a crutch, something she has become so dependent on. And because of that her appetite has been lacking due to the chemo she was given therefore making her stomach shrink potentially. I allowed her to eat whatever she wanted big or small, simply out of survival!
I feel like when she does eat she eats small portions and then wants lots of small meals/snacks throughout the day. I’ve been encouraging her to choose wisely when it comes to the foods she chooses—substance over snacky fillers that simply don’t last. It’s hard though and this will most definitely continue to be a work in progress.

Ally also had an appointment on May 14th—as that was her 2nd maintenance appointment and the start of cycle 2. It was a quick visit—bloodwork, urine sample, checkup. Her labs were great, she hasn’t had any issues or symptoms so far from the medications. Which has been the biggest thing I’ve noticed. NO MORE nausea, vomiting or diarrhea!! Actually between her visit on 4/23 and 5/14 she grew a whole INCH!! Now if only we could increase her weight slowly as well—please continue to pray for that.

I did however, receive a call from the school nurse on Friday 5/17—Ally was not feeling well & went to the nurse. She had a fever of 103 and so began the fever protocol, due to the central line in her chest. Thankfully when I called clinic they had a bed available in clinic, so that we didn’t need to go to the ER! Her ANC(infection fighting number) was 6,000 so they couldn’t keep her. She received a dose of IV antibiotic and fluids, then sent us home. 

The latest on Kevin and myself…..
I won’t apologize for my silence and honestly I’ve been avoiding this update. 
Simply because these last 6 weeks have been a struggle in more ways than just 1. Most days I struggle to get out of bed in the morning.
Feeling lost in the daily responsibilities and requirements of my existence.
Being a caregiver is mentally, emotionally, spiritually and physically draining. Everyone says “don’t forget to take care of yourself too”, but I don’t see how that is possible. I’m barely surviving just doing the day to day tasks of running a household + taking on the responsibilities that come along with summertime. 

In just 6 weeks lots have changed over here, but I will spare you the specifics. 
Just continue to know that it’s not good, and life continually gets harder and harder for me to watch. Sprinkled in there are fears of the future, loneliness, and uncertainty along with caring for 3 small people and guiding them through all of their feelings. I never dreamed I’d be doing this life alone, parenting and otherwise. 

We do however need lots of prayers on a specific situation.
The appeal I made in regards to Kevin’s disability was just recently denied. They are telling me the next step in this process is a hearing—which means I will need to most likely get an attorney to assist in this. 
Frustrated and overwhelmed doesn’t even touch how I’m feeling about all of this. 

My husband was given the worst possible diagnosis almost 9 months ago. I haven’t even begun to process that and all that it means for our family (now & future)—and now I feel like I’ve had to prove that he really is sick over and over. Rehashing all the negative information that this diagnosis brings along with it. It is so unbelievably unfair. 
Please continue to specifically pray for this part of the journey!!
I am not ok, and most likely won’t ever be. If I wonder through your head at all during the day or night, please say a prayer on my behalf. 
 I REFUSE TO…..
Sink
Sit and wonder who or what tragedy is next
Stop living, and instead we will strive to enjoy every single God-breathed moment! 

Bottom line is, it will be one Hell of a summer (excuse my language). Especially with having the girls home from school, and now that he no longer drives it will make it extremely difficult for me to go away now. We will be home-bound pretty much, which could cause lots more stress and anxieties on all accounts. However, as I feel like Ally’s been given a second chance at life it also puts LIFE into perspective—-especially knowing what the outcome could’ve been. 
I’m so beyond grateful and heartbroken all in the same breath, because I can’t even share this wonderful news with Kevin….fully.
That is what makes me so angry.  I feel like his life has been cut short and it is so unfair. 

Lastly, I just wanted to extend my gratitude to those of you who continue to reach out by cards, texts, monetarily or showing up to my dad’s fundraiser BBQs. Your continued prayers and support are what is continuing to allow me to place one foot in front of the other. 
I’ve included a song called God help me by Plumb. 
This song was one of the first songs I listened to after Ally was diagnosed with cancer. I felt alone, I felt like I could barely breathe, I felt lost and scared of what God would ask of me—would He ask me for His child back? 
And now again as I’m faced with much more uncertainty in addition to all that we continue to face. 
The part in this song that gets me right now is much the same…
I’m feeling so alone here
And I know that you’re faithful
But I can barely breathe
God help me

Upcoming appointments & ways to continue to pray for us….
6/4—Ally will have another clinic appointment and check up before the start of cycle 3 of DFMO
6/17–Brain MRI for Ally
6/25–Bone Marrow Biopsy/Clinic appointment for the start of cycle 4
6/26–Pet Scan for Ally
Please continue to pray that these scans remain clear!!

I will try my best to update as I can. And know that I appreciate you all for following along and praying us through!
Glenda