Posted on January 19, 2016
Posted on January 19, 2016This will be a long post and there probably won't be many more of these (long) posts for awhile.
There's also a few things I want to say and make crystal clear, so thank you in advance for bearing with me.
I am what you would call an overprotective and at times an overbearing Mom to my kids. Throughout everything Desi's gone through, I go above and beyond to protect their hearts, which is one reason why this post is coming 18 days later.
I would ask each person who reads this post in its entirety to please be careful with what you type and then click "post" to this page.
I would ask that you take the time to THINK about what you post and the manner in which you post/share it.
Imagine if these were your children, grandchildren, nieces, nephew, cousins... you get the picture.
Many of you see and talk to the kids every day. Please be kind and exercise sensitivity.
It has taken almost three weeks to have the courage to share with you the things I'm about to share and in that time, we have seen and felt darkness on an entirely new level.
On New Year's Eve, Desi had an emergency MIBG scan to see if she had any disease progression and we had received word later that day that the preliminary showed she still had a lot of disease. We waited a couple days before we the final report was in and a day after that, we actually got to see the images for ourselves and read the report.
It was nothing that we could've imagined. Desi was not in the room with us. She was painting her beautiful, big heart out just feet away from us in the playroom. We go through a lot to shield and protect her but in that moment I think it was Terry & I's hearts that needed protecting. Usually, we are very carefully examining her scan images looking for any improvement and even taking pictures on our phones to compare and go back to later but this time was different. Every person in that room was quiet, you honestly could hear a pin drop. While I was in disbelief and looking closer and squinting even, to make sure I was seeing what I was seeing, Terry looked away completely. This feeling of physical illness came over me.
In the last 10 months, our baby has had 4 progressions, FOUR!!! Had she ever reached remission or been NED (no evidence of disease) in between, we would be referring to these as relapses. Desi has never had that.
Prior to that day, Terry & I spent some time discussing what's next. We spent a lot of time on the phone with other hospitals and doctors. We've cried so much together. We've experienced the most painful conversations we've ever had, we've shared the rawest emotions and we've expressed that while we are beyond devastated, we had no regrets when it came to the care for Desi.
She has been and continues to be the strongest warrior and the most extraordinary soul I've ever met, read about, envisioned and more TENFOLD!
I was convinced quite some time ago that she is a real life angel on this Earth and there is nothing closer than that truth.
We found out a few weeks ago through routine weekly lab work that her LDH (Lactate dehydrogenase enzyme) went crazy, which led us to the scan a few days later on NYE, by that Saturday evening/Sunday morning, she began experiencing, what we knew would be coming, joint and bone pain. That pain increased and she began limping. We know how much disease are in both her legs and she was having pain in both legs at times, so we just began carrying her but sadly even just to pick her up caused her pain. Her left shoulder was hurting so she just sheltered her arm and wouldn't move it or use it at all. We carried her everywhere and got her set up and super comfortable in every spot she wanted to sit in.
This was so heartbreaking because if you know Desi, she is so full of life! That is not how we want to see our 6 1/2-year old child who loves to run around, jump, dance, be wild and crazy.
At that point there was no time to fly to NY and wait to see what trial they might be able to get her on and if it would even be something that we would want for her, so we decided to stick with home this time.
Both Dr's worked together and both Dr's were in the meantime reaching out to other research Dr's at several different Children's Hospitals to see if they had anything available immediately for Desi.
Desi began salvage chemo, a single (just one) intermediate dose agent, a couple weeks ago that ran for 5 days. We have met with her new doctor for pain management/palliative care and today she went under sedation for her CT Radiation Simulation. She had a full body mold and the areas marked. She will be having two areas that were causing her extreme pain, radiated.
This is not to cure her, this is to relieve her pain. There is no way possible to radiate every area of disease. There is just entirely too much.
While she was under, she also had an NG-tube placed. This is a feeding tube that goes in her nose to her tummy. This has been a huge struggle for us but as she continues to lose weight, body mass and muscle, she becomes more tired, has less energy and that makes her sad that she can't do the things she used to do for the length of time she could do them before. The tube is only to supplement not replace her nutrition intake. She has been very upset and sad over having the tube placed and is very worried that she will look "different" and is scared about this new change. It is actually quite surprising that she was able to go 21 months enduring the most aggressive and horrific treatment and not have needed one. We are SO proud of her. Tonight this sweet, brave girl took her first bites of food, drank two full bottles of juice and took 3 of her pills and her oil!
She makes my heart swell with pride. She brings tears to my eyes because she is so strong and so courageous and I love her more than life itself.
Desi is so wise beyond her years. She is more mature and intelligent than most adults I know. She has a phone, it is an older iPhone and doesn't have the most memory on it so she is always having to delete apps and photos and videos to free up space on her phone. She had requested an iPhone 6 from Santa (hahahaa), so we hope to be getting that for her this week. So, I will look on her phone and see the texts and threads she has going with her friends and our family and the honesty, the comprehension of what she's gone through and continues to go through, the matter-of-fact manner that she puts things in, I mean, you just have to see the true beauty in that and I am nothing short of in awe of her. She loves and values her family and friends and this phone has been a lifeline for her to everyone out there. She's a huge Bitmoji fan and comes up with the most classic lines, you couldn't even pay someone to be that clever. But she is. She is a one of a kind little human being.
We have a couple trials in Michigan that we hope we can get Desi on but the soonest would be in February, which doesn't seem like that far away, but in our lives, it feels like a century from now.
The thing with these trials that many people don't understand is that there are requirements that you have to meet and because of how aggressive Desi's disease has always been, there's never any time to breathe, no time to come up for air, no time in between treatment to even begin to think of a break before her disease starts to flare up again. We are always thinking at least a few weeks in advance and hoping to always stay ahead of her disease and plan for the next treatment but realistically, it has always been difficult, we are always waiting on scheduling and sometimes her counts to be what they need to be, in order to start a trial. With many of these trials, she has to be so many days post chemo, with either of the two trials, she has to be 21 days post chemo and 14 days post radiation and then you have at least a few days to do the scans and tests that are required to start a new trial at a new hospital, which is what we would be doing.
There are no words on this Earth or on any other planet, that could even come close to describing the fear that's gripped my still-beating heart.
We have decided to make a list for Desi and they are her hopes and wishes she has had for some time and others just recently. We have and will continue to do as much as we can to give her every experience, moment and gift she deserves and will never have a chance to achieve in her life. As you have seen in recent pictures and posts, we have been trying to give her all these things. It has been challenging at times because many times she is not feeling well and has little to no energy so sometimes it's day by day and sometimes we will try to plan something very last minute.
I want to take a minute and send A VERY special Thank You to Dan Williams of Premier Lighting! One thing Desi has made clear is that she wants her Christmas lights and decorations up indefinitely and he is the man responsible for making that happen for her. What a truly amazing man he is. We thank you so very much Dan!
I'm sure we'll get some wonderful letters from our HOA, but there is nothing they can say or do that will get me even close to removing one single light on our house.
Everything has changed and nothing has changed, if that makes any sense whatsoever. We are not giving up. We will never give up hope. Desi never has and she never will. Her love for life, her will, her spirit is SO MUCH BIGGER than this disgusting c word.
Desi IS love.
Love is hope.
Love is strength.
Love is life.
Love is power.
Love is untouchable.
Love is an indomitable will.
And our love for our daughter supersedes our hate for cancer on any given day.
Please keep the energy in the universe out there for her positive.
Please keep the hope and prayers coming in abundance.
Please be kind.
Don't let a day or even an hour go by without telling someone they mean the world to you or that you love them or how much you appreciate them. Life is so delicate, so precious, so fleeting.
Posted on January 4, 2016
Posted on January 4, 2016Facebook likes to show me memories on this day a year ago, 2 years ago, etcetera. Yesterday, the image on the left popped up from 6 six years ago. Desi was 6 months old and she had the biggest and the brightest baby blues ever, she was the brightest light in our lives and 6 years later, nothing has changed. She's still the brightest light of our lives and the sweetest, most loving little girl. The photo on the right was right after her diagnosis. I absolutely love looking at photos prior to 20 months ago. I still love every photo now, it's just different and a hard one to explain. We cherish, we love, we laugh, we cry and we do it all over again over and over and over.