Well things are happening quickly as far as appointments go for Ally. She had a repeat PET scan done last week (4/9) because there was a cancellation.
Again, these results showed NO EVIDENCE of DISEASE (NED)!!—it’s still sinking in, that I get to say those words about my child🥹.

Tomorrow (4/18) Ally will have an EKG done in clinic as well as blood work and a urine sample taken followed by a bone marrow biopsy. Friday after school she will have a hearing test done. All of these tests will be completed for Ally to get on the maintenance chemo.
Then on Tuesday (4/23) she will have a clinic appointment, blood draw, and visit with her doctor for us to go over this new protocol they are putting her on called DFMO. I will sign consents for it and we will talk about all the pros and cons of it, as well as learn more about the drug and its form. —Please pray for all of these appointments to go smoothly and for there to be no anxiety or hiccups along the way. As well as for Ally….if this medication is a liquid form or even orally just pray that it wouldn’t be a battle to take this medication like it was in the past. My new biggest prayer, is for her NG tube to be removed. Its’s HUGE for us, but I know this isn’t huge for God. So please pray with me in addition to thanking God for her miracle of healing, please join me in prayer for her to remain NED as well as Ally to be able to not need or rely on the NG tube!!!  I believe God can do this, please join me in believing this as well!
I will of course continue to update after all these appointments with the latest and what information I learn about this next phase in her journey to healing!!

Please also join me in praying for 2 family’s of children I have been following. Jackson went to be with the Lord on April 6th, after a courageous battle with Neuroblastoma. He passed away on my nephew Jaxson’s birthday, so I will not have a hard time remembering. Please remember the Sensenig family—his parents and 2 older sisters who are now learning to live without him💔. 
There is another family whom I’ve never met, but my heart is also drawn to and aches for. His name is Dakota and he is fighting so hard while on ECMO (life support). Please pray for them as the doctors are saying they are out of options💔…

Update on Kevin…..
I still do not feel comfortable sharing specifics, just continue to know that it is not good.
He had his follow up yesterday(4/17) in Philly. We left our home around 11AM and returned around 6PM, it was beyond exhausting and stressful for the both of us—him more so because he was in the hot seat as the patient.
Days like this are very difficult for him, and extremely stressful and overwhelming alone—-without the added stress of driving to and from the city. Traffic was horrendous on the way home in the middle of rush hour and having a stressed out passenger does not make it easy to drive long distances.

I thought navigating a childhood illness alone was hard, HD will be harder. 
I thought solely caring for a chid with cancer + her 2 siblings was hard, HD will be harder. 
I thought the emotional journey cancer offered was hard, HD will be harder. 

Everything  about our journey with cancer was hard and devastating. I am approaching a new level of hard daily with every single new struggle we are facing. 
We are having to think about so many things, make decisions about the future that I never thought I would have to do at such a young age. 
Living will, end of life care, medical and other wishes he may have. Having hard daily conversations most couples don’t discuss until much later in life. 

There was a point in Ally’s treatment where I began thinking and pondering what I would say to our family and friends about her if she would not make it—Simply because this is the reality of a stage 4 cancer diagnosis. And more specifically when she is lying in a hospital bed, hooked up to so many things and not awake, you wonder what day will be your last with her. I unknowingly started writing her obituary, on the chance that she would not be so lucky. 
Never in a million years would I have thought she would live and instead I would be pondering these same things instead about my husband. 

I feel the direct impact of such a cruel and unfair world we live in.
I am angry.  There really is no other way to put it.
I am not ok with any of this, and it is so sad to have to sit and watch this disease literally take my husband away slowly. 

As you think of me or if I happen to walk across your mind, simply stop and pray. I am most likely hanging on by a thread in that very moment. 
Thank you for your continued prayers and for following along. 
Glenda