ADDIS BATTLE WITH CANCER UPDATE MARCH 18th
Day 278 of Addi’s journey with AML
Day +92 of Addi’s Bone Marrow Transplant
Day 10 of Addi fighting cancer for a second time.
God is so good! A lot of people ask us how we keep saying that although our family is going thru some of the darkest days, our daughter is fighting for her life and we are unsure of what the end will look like. Our answer is simple most days, some days not so much. We know he didn’t cause this, but he has the ability to save her whether that’s on earth or in Heaven. His promise is that the kingdom is hers. That’s where our comfort comes from. On the days we have cried out and believe me there have been a ton he has sent us messages in many ways. One way was last week the man in the spa at Glen Ivy, another way is the constant rainbows we see which to us represent his promise of a new day and how he has lined up the most incredible people who love our girl like she was their own. These are all reminders of his love for us and our children.
Yesterday afternoon on day 4 of Addis's hospital stay and her second fight with cancer we were told words that we didn’t know we would ever hear again. Words that took us to our knees to praise him. Amidst our trials, we’re still praising him. THE CHEMO IS WORKING! Say what?!?! It’s working. The Dr was quick to tell us that she is unsure of how long it will continue to work but for now it’s working and that was the best news! Tara and I cried when she told us and Addi smiled from ear to ear. She even felt good enough to go for a walk outside of her hospital room. She hasn’t done this since the day she walked in four days ago.
Addi is still battling constant fevers but her Dr believes it’s from her leukemia blast being broken open and flooding her system with dead cancer cells.
When we checked in on Tuesday Addi’s blood (not bone marrow, those results were drawn on Friday 3/11) said she was 90% cancer cells which means if they had done another bone marrow biopsy she would of likely been 100% cancer. They only gave us the hope of a little more time, the cost of quality over quantity. Honestly while being told this I was more concerned for the moment of quantity because we need her to stay and not go. We need the ability for science to catch up, for God to perform his miracle. This was one of those moments that you become very selfish and a 100% about what’s best for us instead of for her. Of course those thoughts quickly left and we decided as a family that her quality of life was the most important priority. We once again gave her back to God. Begging for her miracle, pleading to take Chris or I and not her. The bargaining you do with God when it comes to the safety of your child is insane but so necessary. She’s our baby, she’s the worlds baby, but most importantly she’s a child of God the ultimate healer.
Our world continue’s to be and feel like a roller coaster, we don’t sleep much, we research more then we ever had in our lives and are still working. We hold every moment with the highest level of hope and love because in the end this all ends.
Our God is good and we pray he will not only allow for more time to heal our baby, but he will let our girl make so many memories as we check off more bucket list dreams. Thank you to everyone who has helped make these dreams a reality. You will never know how much you mean to us but I pray thru our words you feel it. You feel our love, appreciation and the gift you have created for more memories to be made for her, all who love her and our family.
Chris and Staci
#teamaddi #aml #childhoodcancer #childhoodcancerawareness #morethan4
battle with Cancer updated January 2, 2022
Help Addi battle cancer!
(**TLDR; Help, we need money for medicine for our daughter. It's $682 per day and she can not handle the pain she's in without it.
Please share link)
If you've been following Addison's story, THANK YOU for your continued support. If you're new here, this introduction is for you. I'll try to keep it on the short side, but I also feel like there's so much to say, so I'll stick with the important bits.
Addison is a 17 year old all American girl who is full of life. She loves the beach, her family, friends, boyfriend, and puppy (Layla).
She loves little kids and is always the most sought after babysitter.
June 15, 2021, her entire life came crashing down on her. She hadn't been feeling well for some time, and after multiple trips back and
forth to her doctor, they decided to do blood work. (I'll be honest here, her bonus mom stormed the castle and said she wasn't leaving
until blood work was done because she knew in her heart there was something terribly wrong). Turns out those momma instincts were spot on. Addi had Acute Myeloid Leukemia (AML). AML is an extremely aggressive form of leukemia and it is very deadly. When she was
admitted to the hospital the situation was extremely grave. She was in ICU at first just because she didn't technically have enough
blood or platelets in her system to be alive.
A couple of days into this new journey and the doctors had to shift gears. New tests confirmed their worst fear; Addi also carried the
FLT3 genetic mutation. Basically, a mutation of this gene encourages the growth of too many abnormal leukemia cells. AKA chemo isn't
enough. This one change moved Addi from "let's do a few rounds of lengthy chemo, kill the cancer, and return to life." to "Let's shove
every chemo known to man into her system, try not to completely kill her, and then hopefully find a donor and do a bone marrow
transplant, more harsh chemo, and try not to die in the process."
When we looked for a donor, there was not a match in her registry. No donor meant absolutely no chance of beating this. While we ran multiple "Be The Match" drives, we had to come to terms with the reality that she may never go into remission
(turns out she is massively chemoresistant), and we might not find a suitable donor anyway. We asked Addison what things she wanted to do to live. That is where this go fund me was born. We fulfilled SEVERAL items from her "bucket list" in between lengthy hospital
stays, and the amazing generosity of all of her wonderful supporters. Because of YOUR kindnesses, we were able to live more in the last six months than most people do in a decade. We will never forget every incredible donation and gift that made this possible.
Because without you, NONE of this can happen.
Now down to the dirt. You see, cancer doesn't just kill people. Inability to afford medical care kills people with cancer. There.
I said what I said. We had large savings but have spent almost 80 THOUSAND dollars of that savings JUST on the due medical bills so
far. Much of that was spent at the first Children's Hospital she was in. Do you know that we had to pay them in FULL before they would
release her genetic testing to City of Hope (which was our only hope of survival at this point)? We chose a clinical trial for Addi because that was her ONLY chance to get more time on Earth. Clinical trials are covered at 80%. That's all well and good until you realize our medical bills are over $6,000,000 so far. (billed to insurance, and not all of that is clinical trial stuff but the end number will make you barf)
Next. once she survives this bone marrow transplant, we have to live next to the City of Hope for the next year.
That's Los Angeles county, folks. We can't stay with a friend because Addison will have NO immune system.
We were fortunate to get an incredible deal on an apartment (through a friend, thank you, LORD!) But rent is still $2,400 a month,
on top of our existing house payment, and utilities for both houses since our other children can not share a living space with Addison
either. Now the hospital DOES offer a discounted rate for a hotel we could use instead. HOWEVER, it is one room with two beds.
Not very much space, as most hotel rooms go. (the apartment is 2 bedrooms) Not complaining, but at the discounted $98 per night,
we are still looking at $3k a month without the luxury of a full kitchen/etc.
So if you're wondering why we went this route, now you know.
Now that Addison has had her BMT, we have more immediate needs. Allow me to digress. To put it bluntly, this is pure hell. They warn
you that this will be excruciating, but nothing they tell you can really prepare you for what really happens. You see, even during the
lengthy hospital stays, and violent bouts of chemo, Addi never once complained about the pain. She was always at a "4" on her worst
days. Now she is ALWAYS in pain. Always an 8-10. Transplants cause many side effects. Addison always seems to get every side effect. On top of being violently ill ALL.THE.TIME, she has begun to get severe neuropathy in her hands. They are swollen, look bruised,
and hurt at all times. It's unbearable. She often falls asleep with them sitting in the ice bucket because that gives her some relief from
feeling like she is being burned alive. (how she describes the pain) But don't let that last sentence fool you. Sleep has been elusive for all of us, especially Addi. She has been sleeping in 15 minute increments before she wakes up from the pain. It's like being tortured.
They have given her dilaudid, morphine, and fentanyl to help, but nothing is working. We asked if there was, ANYTHING else they could give her. They said yes, but NO insurance company will cover it, and it is expensive. Not that we're made of money, but we
can't watch our baby girl suffer, no matter what we need to do, we'll do it. We told them to order it to see if it helps. $682 for a tube the size of my pinky finger. We went through 3/4 in one day, so we are going to need to replace it almost daily. THIS is our most IMMEDIATE need. If you can help us cover the cost of these tubes to give our baby the respite she so desperately needs, we would be so grateful.
It's hard to ask for things when it comes right down to it. It's an incredibly humbling experience. And we are so very grateful and blessed by your generosity.
If you read all the way to here, WOW. THANK YOU! Whether or not you're able to give, we are so honored that you care. Please share
our story so we can get it in front of as many eyes as possible.
OCTOBER 2021 -
Meet Addison Conely, an All American 17 year old girl that should be celebrating her Senior year at Chino Hills High School. Instead, she has been in the fight of her life battling an aggressive form of Leukemia known as AML or Acute Myeloid Leukemia. On June 15h life was turned upside down when the results of her bloodwork discovered the irregularities.
Since then her condition has not improved and her diagnosis has been upgraded several times in ways that have not been favorable and decreasing her chances of survival. In the meantime, we have faced adversities with the red tape of FDA approvals and trials. You see Addi was not selected for the clinical trial that has been quite successful with other AML Patients with the same diagnosis that she has. The irony of it all is what I am about to share. The doctors have said the current treatment is not working, and they don’t believe it will in the future. They believe the clinical trial drugs would offer better hope and results for her. However, they cannot give her that medicine till she runs multiple treatments of “Standard Care.”
Now for the reality, the current treatments are wreaking havoc on her body, and not progressing forward in a good way. This can take its toll on the mind, body, and finances too. The current hospital bills are mounting well over 2 million dollars and the co-pays and miscellaneous expenses add up quickly. The Conely Family is doing everything in their power to fight for their girl, exploring cashing out their 401k.
Addi is a strong, brave, and courageous young lady, and she is quite funny too. She has been strong through it all and faces her adversities. into contact with she is able to smile, and tell some jokes or give some attitude too. Her line of, “because I have cancer,” entitles her to get what she wants, and most of us have a hard time telling her no. Her journey since mid June has been an all out battle, and has not been without its challenges and setbacks too. Addi has found strength in the reach outs from our community, prayer nights at the hospital, and of course from the positive interactions on Social Media, including her FB live outings.
At CHOC, and most of the hospitals in CA the restrictions have been placed back on visitors, and only 1 parent can be in the hospital at a time. And so hospitals can be mighty lonely and cold. Addi has made friends with quite a few other kids on the oncology floor at CHOC and shared her story with them too. It gets heartbreaking when many of them do not make it home. Addi has taken an approach that if the doctors can find a way to make progress forward, then she is open to treatment and if not then she just wants to live the time that she has left. She has created a “Bucket List” of items that she wants to do, and we are starting to knock these items off her list.
As of September 2021, Addis is receiving treatment at the City of Hope trying to find a chemo treatment that will get her into remission. This will allow her to receive a Bone Marrow Transplant at the end of the year. The Conely family feels very blessed through all the love and support from friends, family, and Be the Match, not only did they find one match but two.
** Please keep Addi in your prayers as she goes through her next treatment plan with her family and Doctors.
No matter what were giving it to God, and allowing Addi to LIVE every day. To say the least, this process has been brutal, and a ton of
tears have been shed. The sleepless nights, the sores, internal bleeding, the battle that this young lady has gone through, and yet is still able to smile is a testament to God’s grace.
Chris, Staci, and Addi appreciate everyone's prayers and constant love they feel this daily, and is helping them find strength.
If you would consider donating to help them get through this time, every dollar helps and supports getting better, and the family gets through this trying time. Please consider helping this family financially.
God Bless you and THANK YOU!
* ADDI HAS CREATED A BUCKET LIST HER FAMILY AND FRIENDS ARE WORKING ON SCHEDULING THEM WITH HER DOCTORS *
1. Celebration of Life / 17th Birthday Party - done
2. Get a Puppy - done
3. Go zip lining in Las Vegas - done
4. Go to a tropical destination
5. Go to Disneyland with the plaid coats - done
6. Ride in a hot air balloon - done
7. Get a tattoo of orange ribbon - (can't do it at this time)
8. Go on a road trip to Santa Cruz
9. Go snowboarding - done
10. Go to Glen Ivy - done
11. Cliff jumping
12. Help kids with cancer feel better about themselves - done
13. Skydiving -
14. Road trip to Washington -
15. Family trip to silver dollar city in Missouri
16. Stay in a treehouse
17. Rent a beach house for my besties and I - done
18. Get Engaged - done
19, Get Married
20. Horseback Riding - done
Please join us in prayer:
Lord, we thank you for all of your mercies and blessings. Thank you for being ever-present with us even when we are not so with you. Lord, we lift up your sweet child Addi to you. Lord, we ask that you heal her from this terrible disease. Lord, we know that each day, even each hour, brings new circumstances to be dealt with. Lord, we are thankful that you know those needs even before we do. We pray That you give the doctors the knowledge they need to quickly correct the problem at hand. Lord, we pray that you will bring Addi and her family OVERWHELMING peace and calm. That their trust and faith in you is unwavering. That the weight of your presence in her room can be literally felt by everyone present. Lord press into Addi letting her know that you are walking beside her in the valleys and on the mountain tops. And Lord We pray that the family will constantly feel your presence as they battle through this journey ahead of them. Above all Lord, we trust in YOUR will and strength and not in our own. In Jesus' name.. Amen!