This little girl is our world. She was 4 years old when this horrific nightmare began. She's grown up so much that now she relates to adults more than she does other kids. I trust this child with my life and know it is in good hands. I dare not say that for any other person. What I would not give nor do to have our old life back.
This 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.
Facebook 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.
Said goodbye to 2015 and hello to 2016 snuggled up with this precious girl. There is no place on Earth I'd rather be than right here, right now ??????
625 days ago, our lives were forever changed when we heard the word Cancer and we were thrown into this...this... I can't even put a description into what "this" is other than utterly devastating, incomprehensible and unfair.
I have had many lows in Desi's battle, many dark moments where I feel beat up, deflated and broken down so much. I am tired. I am tired of watching this disease and other childhood cancers rob our babies of their childhood, robbing them of their lives!
Not tired in the sense that I want to give up. I have never gone there and I never will no matter how defeated I feel, but I am still tired. Desi's cancer has rocked our world and turned everything that once felt safe and secure into uncertainty and into fear of the unknown. This girl has redefined strength and courage and bravery in ways that I could not in a billion years ever fathom. I think about my sweet, innocent, amazing girl... If I'm tired and I'm not even going through any of what she is, then how physically, emotionally, mentally and spiritually drained and exhausted she must be and that is exactly what I've seen in her since we've been home.
It's been twelve days and I've not seen Desi so tired, weak and frail before, not even after her tumor resection surgery. She is not herself and it hurts every inch of my body, I truly mean it physically hurts.
I pray so hard that I could give her my health, my body, my energy, my cells, my anything. I just want her happy. I want to see her smile again. I want to hear her laugh. I want to see her run around and play with her brother and sissy and friends. I want to hear her boss Daddy around. I want to hear her asking to go to Outback everyday. I want to hear her asking to watch American Ninja Warrior over and over again. I want to hear all the things she wants to do and all the places she wants to go but right now, all I hear her say is how tired she is and that she just wants to sleep. I've watched her force a smile. I've watched her do that many times because she wants to make me happy. I hear her tell me she just wants to go home. I hear her tell me that she's not hungry and doesn't want to eat.
Desi spent the holidays mostly sleeping in my lap really not wanting a thing to do with opening gifts or playing with the kids. There was one day that she seemed to have an appetite and interacted and engaged with others and we thought maybe she's coming back around, but that was short lived. That was on Saturday, it was our first time watching Derek play ball. Desi was happy and she was as active as we had seen her. We've been able to go to 3 of his 4 games over the last few days and I know she enjoys it even if she's not feeling well. She will be so engaged in the game and hearing her cheer for her brother was the sweetest thing ever.
Life has changed so much for us. As happy as I am to be home with my kids and our families, it is a painful reminder of what our life is like now. These holidays don't feel like holidays. Certainly not when you have a child fighting for their life and they are so sick. Nothing matters at that point. Nothing is as significant as that. I put on my happy face. I show up. I am present. But nothing in me feels alive. Nothing in me feels joy unless my kids are happy and healthy and we haven't had that in over 20 months.
I struggle every damn day with this new normal. It is not right what is happening.
As hard as everything is, I am continuously grateful, humbled and blessed by all of the support and love we have been showered with.
Every week we do labs to check her counts and her LDH. I know I've talked about her LDH before. With Desi, that number has always been on point as an indicator of the disease in her body. When we see that number on the rise or spiking in such a short period of time, we know to scan and scan immediately.
Her counts have been so great, you would expect her to have energy and be feeling good. Last week, her LDH was within normal range (178) then this week it took a flying leap to 619.
I mean, it is just shocking to see in 7 days that number jump like that. Immediately we get on the phone with her doctor in NY and are worried out of our minds, I'm wanting to hear maybe it could be something else, maybe the blood infection hasn't cleared, even though she's still getting treated with antibiotics for it, maybe it's still there and that's causing the spike in her LDH, maybe for once it's not the disease, maybe, just maybe NK therapy worked for her...
I've been praying so hard, praying for guidance and direction, praying for her miracle, please God, please give my daughter a chance at life...
NY team wants to move her scans up from the end of next week to the beginning of next week but tells us if her home hospital can do it sooner, then get it done. Sloan is a big hospital that has many, many of these scans scheduled a day and normally Desi's are scheduled weeks in advance, so trying to move one up in such a short period of time, is logistically challenging, so I wasn't too hopeful it could happen.
We just need to know. God, we just need to see some improvement in this scan.
We're on the phone with her home hospital. We know that her doctor at Sloan is working so hard to find something for Desi, something that could be her miracle, something that will stick with her damn stubborn and relentlessly aggressive disease. Terry jumps on the phone and starts reaching out to other NB specialists, CHOP, Helen DeVos, CHLA, Stanford, to see what trials could be available to her. As long as we see some kind of improvement, no matter how small it is, with her counts being as good as they have been and her not requiring transfusions, we could jump into something immediately.
I get in touch with our home doctor, with his NP and I explain what is going on. She jumps on the phone with Desi's doctor and I kid you not, within a couple hours, she called me back to say it's done, be there tomorrow morning for her MIBG injection, I don't know how Dr. K did it, but he pulled some major strings to make it happen. This was yesterday. This morning I took Desi to Loma Linda for her injection in preparation for her MIBG scan tomorrow morning. As her technician is injecting the radioactive isotope, he begins to tell us how yesterday at 12:10 pm, Dr. K walks into the Nuclear Med dept, doesn't call but walks straight down there and tells them he needs an emergency scan and can they get the injection tomorrow. The deadline for the lab in Florida was 3 pm EST (noon our time). He gets on the phone with the pharmacist at the Florida lab and asks him if there's any way he can make it happen. The pharmacist said that the shipment has to be on the plane by 5 pm EST to get flown to CA to be to Loma Linda hospital by 10 am. Luckily, the lab is right next to the airport and they got it on the plane and Desi received her MIBG injection this morning and will scan tomorrow.
I don't know how that all happened the way it did but I'm telling you, God had a hand in that and he put two of the most incredible physicians with such great love and dedication to their patients, in Desi's path for a reason.
When we decided we wanted a second opinion for Desi, I fought tooth and nail to get that second opinion at the hospital that WE wanted, not the one our medical group wanted to send us to because they were in-network and would be covered by our HMO insurance. I dug and dug into our rights and found out that California law states that our insurance has to cover the second opinion at any hospital that we choose, whether they are in-network or not. So, to please our HMO, not only did I take the second opinion at the hospital of their choosing, which happened to be CHLA, another wonderful children's hospital that has been on our radar on a couple of occasions, but we also got a third opinion from MSKCC, which is where we had our hearts set on taking Desi for her surgery and continued treatment that was not offered at our home hospital.
During this decision, we had been very open about everything with her home hospital and her doctor. We, in no way felt for one second that we weren't satisfied with her care at Loma Linda, we just knew from what we had researched about Stage IV High-risk Neuroblastoma, how aggressive this beast is, we knew in our hearts we wanted a team who specialized only in Neuroblastoma and almost as important, a surgeon who performs multiple tumor resection surgeries a week versus just a handful a year.
From the day we made our wishes known to her home doctor, there was never, ever any hard feelings, never an ounce of resentment, never a discussion about questioning our decision, never bad-mouthing the other hospital, never any ego's getting in the way of the best care of Desirae, there was never any of that going on and that is why to this day, we know we were incredibly blessed with an amazing doctor and person to be Desi's home doctor.
Both hospitals have worked hand in hand with each other and have always kept Desi's best interests and care at the forefront of everything. I feel like we honestly couldn't have picked better doctors for her.
For now, our return to NY is up in the air, we still have a flight with Corporate Angels scheduled for Monday but that could very well change after her scan tomorrow.
We have been cherishing these days so very much. Being together as a family. Surrounding Desi with all the love in the world. Encouraging her to keep fighting. Being aware of every little thing that she says and does. Praying desperately for her to feel better, for her spirits to return, for her to be happy and pain free. Not ever giving up hope. Soaking up every last second with her and never letting more than a few minutes go by without telling her how much we love her, without smothering her with hundreds of kisses, without her knowing how much she means to us, without her knowing how brave and strong she is, without her knowing that she is our world.
Everything begins and ends with her.
That is all.
Please God hear our prayers.
Man, I miss this happy, silly, spunky Desi. It feels like we haven't seen this Desi in a long time. I miss our conversations, I miss her smile, I miss her love, I miss that spunk but more than anything I just miss her feeling good and being happy. It's so hard seeing her in pain and asleep all day. It's hard sitting in her room and she might only say a few words that whole day. The day feels like a year.
We keep waiting each day so patiently for her to turn that corner and start feeling just a little better. I'd love to see her want to get out of bed. I'd love to hear her say, "I'm hungry" or "I want to play", anything really, I miss her smile so much.
This was February 8th this year. Obviously by all the hair she had, this was the first time doing chemo again in 4 months. This was her first progression and she was inpatient doing her high dose round of ICE chemo. It's almost unbelievable that this has been her life for a few months short of two years. Her little body is absolutely amazing to me. There's nothing in the world more important to us than seeing her better. All the sacrifices we've made, everything that's gone on the back burner, everything that has suffered as a result... I don't care about any of it, none of it matters, we just want our baby girl happy and cancer free.
I love you so so so much my love. I miss our kitty conversations. I miss our singing and dancing. Ava & Kelly miss their Mommy so much. There's nothing in this world Momma & Dada wouldn't do for you. You keep fighting sweetheart. You are so strong, so brave and the most incredible human soul I've ever known.
Time feels frozen. I know life is going on outside the walls in this room, outside this hospital but it sure isn't for us.
This week has felt like a month. Some moments have been frightening, some conversations cutthroat and sobering but also some that have been encouraging. Desi has had 3 negative cultures in a row. This means that the antibiotics they are using are doing their job and clearing the infection in her blood. She will have to remain on this course of antibiotics for 14 days.
She has not had any fevers in 2 days, her blood pressure has been stable and yesterday for the first time all week, we saw her heart rate in the 130's, 140's and 150's. That was a huge change from the 170's and 180's it has been in. For hours we would watch her vitals monitor hoping to see her heart rate to stabilize. She is still neutropenic, has no WBC and no ANC, so we continue with daily neupogen injections to stimulate her neutrophils.
Wednesday is when we learned of the active infection and were told they made the decision not to administer 3F8 because it would not be safe for her, it would be too much stress on her heart.
This specific antibody treatment causes excruciating pain that can last for 15-20 straight minutes. The antibody targets the GD-2 markers on Neuroblastoma cells but they also attach to healthy nerve cells and that is when she feels the most torturous pain she's ever felt before. During this time is when O2 sats drop, heart rate shoots up, blood pressure shoots up and she is grunting and holding her breath through the pain, asking over and over, is it over, when's it going to be over, I need it to be over, there's pain everywhere, I feel horrible, I feel horrible!
Most of the time I am at a loss for words because I wish so deeply I could grab my baby and run the hell out of here and never have to take her back. I would never in a million years think that I'd have to consent to a treatment so horrific for my child. Yet, these are the treatments, these are the trials that are available that show promise that would have the most effect on her aggressive cancer, in combination with other therapies and treatment.
Thursday although she was fever free, her bp & hr were not and even though we were told we would play it by ear but the plan would be to administer the 3F8, in the end it could not happen, her heart rate was just too high to proceed, starting a treatment that's known to cause a heart rate to shoot up on top of a heart rate that's already 170-180, could have catastrophic repercussions.
Friday came and finally after blood, platelets, and a bolus, her heart rate started coming down substantially. I felt very confident that they could administer the 3F8 safely now. That was the plan from morning rounds and even though her heart rate did start to go up because she's been in pain from the c-diff, she was still given the go ahead to receive the treatment. We were relieved to hear that, even though we know how much pain it causes her and the lingering nerve pain hours and hours after, it is crucial to this specific Natural Killer cell therapy. She was to have 5 days of the 3F8 antibody therapy and she was able to do 3.
Everyday I catch myself staring outside the window of her room from the 9th floor. I love looking up at the sky, it's comforting and peaceful to me. Then I start to daydream. I think about pressing rewind and going back to a safe time in the past, a date where none of us ever knew this nightmare we are living now, where we were all together under the same roof, where my babies got to see each other and play with one another everyday, where we had a routine, a boring and monotonous one, but it was ours and nothing in the world threatened it.
And now today, worrying about tomorrow is my biggest concern, forget about routines and schedules, we don't have the luxury to live by one anymore, any one of the many families we've met along the way will tell you, it is so extremely stressful, to the point where some days you remain checked out, distant and numb, you can't cry, you can't smile, you can't force any emotion, you are just stuck in this frozen state, you have to, I have to, in order to deal with this life.
I miss our old life so bad. I miss home so much. I miss seeing my babies every single day. I miss nagging them and reminding them of the dumb little things. I miss the running around all day being a chauffeur, maid, cook, errand runner and problem solver for everyone. I miss the constant chaos and the little arguments and tattle-telling. I miss feeling overwhelmed some days by being that multi-tasker. Looking back, those were luxury problems. What I wouldn't give or do to go back to that. I miss and I grieve our old life.
We have been in NY for nearly a month now doing scans and starting a new trial for Desi. The NK cell therapy trial. It is a 2-week treatment. This week is the 2nd weeks for Desi.
This week has been hell.
The last 24 hours torture.
Desi needs a lot of prayers.
She was admitted last night due to a neutropenic fever, so they drew blood cultures and started her on a broad spectrum antibiotic. She's had non-stop fevers for 24 hours and Tylenol around the clock with a heart rate that has stayed between 160-190 and elevated blood pressure.
She's also been having horrible nerve pain in her feet that dilaudid, oxycodone and gabapentin are struggling to relieve and all she wants are cold packs on them.
8 hours ago we were told that for the first time in 20 months, her culture grew bacteria and came back positive for an infection in her blood. She has staph aureus.
We now have an answer as to why she's had continuous fevers. She has started an additional antibiotic, a much stronger one.
Please pray that this blood infection is not resistant to the antibiotics.
Please pray that she has negative cultures.
Please pray that tomorrow she is stable enough to receive her treatment.
Please pray that this infection is not hung up on her central line, because that would mean a surgery to remove her port and Desi's port has always been a traumatic experience for her.
Today the team could not give her treatment because the 3F8 would have caused her body too much stress and it was not safe.
I don't have to say how crucial this treatment, this trial is for her.
In a dozen rounds of high dose chemo, this was the only round administered outpatient. There is a reason our home hospital only administers high dose chemo rounds inpatient and this is one of them.
Thank you for your support, prayers and love for Desi. We know she is thought of by so many around the world.
On February 6, 2015 the family sat down with Desi's team of doctors to go over her scan results. Mom & Dad were looking forward to finally hearing those words that Desi has worked so hard for, NED (no evidence of disease). Unfortunately, they heard the exact opposite. Desi's cancer was back with a vengeance & spread. She had as much cancer as she did at diagnosis, minus her tumor.
Desi was immediately admitted into the hospital. She started a round of ICE chemo and has finished that.
She is due for another round of ICE chemo & scans to see if the chemo is attacking the cancer.
Please continue to hold Desi in the light. This is the first time doctors have mentioned not being able to do anything. As you can imagine the family is heart broken over this news.
Thank you for your continued support.
A lot has been going on the last couple days. Yesterday was deflating. There has been a roadblock in Desi's treatment and we are now looking at a new plan of action to get back on track. I will get into that later once we have all the information from her team in NY. But for now, Desi has to have her tooth extracted. We found out on Tuesday at her dental cleaning that she has an infection and any ...infection in her body is bad news so it has to come out immediately.
Please also pray for guidance in all these future decisions that are in the works for her treatment.
Please follow her updates at www.facebook.com/believingfordesi
You will find the most up to date info on treatment & how Desi is doing there.
Thank you for your continued support, love & prayers.