Team AddI

One thing that has stayed steady during Addis's fight with cancer is her sassy attitude and that SMILE that everyone loves to see. Addi we are all so proud of you!!

Addi created her Bucket list last year when she was told her AML Is terminal.

ADDIS BUCKET LIST

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 an orange ribbon - (can't do it at this time)

8. Go on a road trip to Santa Cruz & Monterey - done

9. Go snowboarding - done

10. Go to Glen Ivy - done

11. Cliff jumping - done

12. Help kids with cancer feel better about themselves - done

13. Skydiving -

14. Road trip to Washington / Seattle - done

15. Family trip to silver dollar city in Missouri

16. Stay in a treehouse - done

17. Rent a beach house for my besties and - done

18. Get Engaged - done

19, Get Married - done

20. Horseback Riding - done

21. Road trip to - Zion - done

22. Crusie - done

THANK YOU TO EVERYONE THAT HAS HELPED ALONG THE WAY !!!

AUGUST 22

Day 425 of Addi fighting AML

Day 249 since Addi’s bone marrow transplant

Day 164 of fighting cancer for a ✌ time.

It’s been a while since we posted a thorough update loaded with details and all of the things happening in our girls world right now.

Thru the beauty there is so much pain. The things we once longed for are distant memories of a life we once had. A life that has had its innocence stripped away like it was never even there.

We finally received word back from the new clinical trial in Texas. Addi must be cancer free in her spinal fluid and must be 18 years old to be considered to participate in this trial that has shown HUGE success in patients with Addi’s AML and her type of mutations. Praying for her to feel up to traveling and cleared for this trial. It’s like the Seattle one we wanted to do so badly for her a few months back but God closed that door. Now on to the Texas trial where Chris or I will live there for a couple months while she undergoes this trial. We will all take turns staying with her and if we’re able we will all stay with her together for a few days so she never feels the sadness of being without us all.

Last week being told that her blast were back in her blood was a huge blow and major set back to our hearts. But thru constant prayers and support we were reminded by our dear friend’s that this is all apart of God’s perfect timing.

Today Addi started her five day IV chemo treatment plan. It makes her Ill, makes her extremely tired, makes her feel like overall crap. It’s so hard to know what this is doing and will do to her fragile little body while it works so hard killing the cancer that her body is making and be okay with it. Actually sign authorization forms saying “yes please give our daughter this chemo”. You know this chemo that has been around for 42 years. This exact chemo is sold from pharmaceutical companies in two vials of 50ml each? But only 70ml’s are needed. So yes we will pay for 100ml’s and 30ml’s will be wasted while being thrown away. Ridiculously wasteful and high way robbery but yet no one is listening to us while we as parents are screaming about this.

We were told her spinal fluid blast are up to 58% from the 50% they were last week but the wbc are lower and that’s a big piece showing improvement.

Addi has gone down to 89 pounds. She is malnourished from not wanting to eat anything for days at a time. She now has what they believe is Alopecia areata which consists of several spots on her head where she has lost her hair. For being a teen girl this is a pretty big blow. The hits just keep coming with the talks of a feeding tube coming soon. We must get her to gain some weight and start eating again.

Our girl just needs and deserves a break. She wants us to make all the plans. She wants to go on another cruise, she wants to stay at a beach house, she wants to experience Disneyland with the plaid coats again, she wants to go to the Luke Combs concert in Tahoe next month, she wants to go off roading, she wants to experience the Bahamas and Nashville. She wants to plan her 18th birthday party since we were told she wouldn’t even make it this far. While we want her to feel better, we want her to kick cancers ass and have all of this be a distant memory, she talks about her time being short, she talks about being tired and somedays she even tells us she can’t do this anymore.

These words cut like a sharp dagger into the depths of our soul. I find myself sometimes day dreaming of what her life would be like, what our lives would be like if cancer had never come into it. What would she be doing right now? Would she be leaving for college? Would she be going to school local like Andy and Nolan? How would they all be living their lives? Cancer has made us all almost stop living. Holding our breath to see what happens next and bracing ourselves for what that even looks like.

This cancer world is so unforgiving and so very cruel.

I found myself today walking with our girl to the main hospital and standing there in between the buildings while the sun hit my head and it had felt so good, so freeing. I had given my hat I was wearing to Addi to protect her head and eyes from the same sun I was enjoying. I closed my eyes and felt the warmth that was being offered after leaving the very cold hospital room we had spent all day in. I felt so heavy, so alone and so incredibly sad. How can we even begin to process all of this news while knowing we have to get up and do it all over again tomorrow? I don’t know how we do it everyday and every night. All I know is we have the privilege to fight another day and that is a true blessing in this madness. So many families are no longer fighting. They are now forced to carry on with their lives as if they’re not broken forever.

Our hearts are broken and while we put on smiles and try to get thru everyday with everything that is thrown at us we cry, we pray and we beg God to heal her on this side of Heaven.

Much love,

Chris and Staci

AUGUST 14th

Hey Team Addi,

This weekend has been incredibly hard on our girl, but it has had some pretty incredible moments too. We took her to Big Bear for the weekend and she has barely been out of bed. She’s home now and just not feeling well.

On Friday she went in the spa with the kids and enjoyed some laughs. Then got out and went to bed. Saturday mid day we were blessed to go on a boat ride around Big Bear lake where the boys were able to fish and we enjoyed a lot of laughs. Our friends Amy, Antwan and the kids came up to meet us on the lake too. Addi and Josh both drove and we had a great time. After about an hour addi was exhausted and wanted to go back to the house. When we got back she went back to bed and didn’t get up until Sunday morning. She didn’t want to go home but wanted to just enjoy the time with her family and friends, even if it was from a distance while resting.

We played a lot of cards and just kept extremely low key so there wasn’t any pressure on our girl to do any more then she felt up too.

She continues to be extremely tired, headache and has barely ate or drank anything. Until tonight she was refusing to go the hospital for fluids and something to help her overall.

Our girl had been doing so good and it’s so damn hard to experience the highs and lows of this awful disease.

We’re incredibly grateful for the outpouring of love, prayers and support. This weekend was made possible from our dear friend Shelly who connected us with two cabins and made for another bucket list trip for our girl to happen. Special thanks to Shelly, Mike and Jennifer.

Please pray for our girl as I know you all do daily. We’re forever grateful and love you so much

Love always,

Chris and Staci

#teamaddi #morethan4 #thissideofheaven #pediatriccancer #bucketlist #addisblanketsoflove

AUGUST 4th

Day 407 of Addis Journey with AML

Day +231 of Addis Bone Marrow Transplant

Day 146 of Addi fighting cancer for the✌2nd time

Hey Team Addi,

Addi had a great night doing nails and dipping all the fruit lisa brought over in chocolate. She truly loves this kind of stuff and just hanging with her friends and family the night before long hospital days. It keeps her mind busy and occupied.

This morning was an early morning for her weekly LP and chemo. Her blood has held from last week which is huge. That’s another miracle happening. There hasn’t been a week since January that she hasn’t needed blood at least once during the week. Usually it’s multiple times a week she needs blood products.

Today platelets were 10 so they’re giving her two bags. That’s a great amount which helps her have a good weekend without the extreme exhaustion she feels when they’re low

Blood was 8.2 that’s so good for Addi. She hasn’t had a blood transfusion in a week. She’s normally in the 7’s which makes her feel crappy.

Please pray for a smooth procedure for our girl today. This is the week we should see no blast in her spinal fluid (praying) if we continue the trend we have been seeing. God willing that this is part of his big plan to heal our girl.

Praying for her to feel God’s hand upon her and guide the Dr’s to her miracle that has been created by God on this side of Heaven.

Her best days seem to be some of our harder days. I think it’s because we finally have a moment to breathe and then reality sets in of just how hard all of this really is. It’s easy to not really focus on the hard when we’re in the middle of it that’s for sure. Those moments are full of fight or flight and just keeping our heads above water.

We ask for a specific prayer for Chris and I as well. Please ask that God heal our hearts from the burden and anger we carry for the people whom have chosen to treat Addi so terrible over the course of her life and especially over the last 13 1/2 months. The ones who only want to use her updates to cause her harm and hurt her fragile soul. The ones who walked away a very long time ago but still refuse to take any ownership in that they are the adults and she is simply a child who shouldn’t be forced to have relationships with abusers. That standing up for herself has never been a bad thing and that just because you are her bio mom, bio grandma, half sister or uncle doesn’t give you the right to treat her as if she is a nobody unless of course it’s convenient for them to do so

Watching your child struggle and in constant physical and emotional pain that is finally healing that was made from being abandoned by the ones who should love her unconditionally has created her heart for certain individuals in her life to become so broken. We need God to take away this burden and anger we hold for them and the pain they have caused so we can all be set free from this brokenness. Please God heal our broken hearts and heal her on this side of heaven.

Much love,

Chris and Staci

AUGUST 2

Hey Team Addi,

Wow what a whirlwind of a weekend our girl had with all of her besties and family in tow. This cruise was on Addi’s bucket list and when we had received some news a few weeks ago we decided it had to happen asap! Our dear friend Jodi Turner Bohlander jumped on the task of contacting the executive offices of Royal Caribbean and started the wheels in motion. Planning a last minute cruise is not for the faint of heart, especially when it’s for 24 people of which every room must have a 21 year old in. Geesh it was a lot but so thankful it was able to be done.

We laughed and we cried the entire weekend. I put aside my fears and rode the HUGE water slide with Addi in a double seater tube. We played craps and Addi was a natural she loved rolling the dice, we played mini golf, got man handled by the guys at Papas and Beer because Addi said it was on her “bucket list” to watch us all do it. She laughed and smiled the entire weekend. She slept a lot to catch up every afternoon so the evenings would be full of laughs and one night she even danced a little.

Since last weekend with Luke Combs she has had a new lease on life. A reason to fight again to want to beat this cancer.

We were invited to go onto the bridge to meet Captain James and see how they drove the ship. We were told by Alex the manager that this hasn’t happened in three years. Whoa and we get to go? He let Addi sit in the captains chair, explained everything to us and answered all the questions. It was so cool and so incredibly amazing to have this opportunity. Again this weekend the world felt right. Of course we all did everything to keep her safe and protected, made sure she slept in and took naps, used her wheelchair for any type of distance.

Honestly when I look back over the last 13 months I’m in total awe of the roller coaster ride we have been on all while fighting to save our girl. When we came home from Zion Addi had told us she was done fighting, done being sick and done with any treatments. We really felt without God’s divine intervention this would of been her last trip. She was so weak, so tired and her smile was hard to find. But then she decided to keep fighting and we sat down with her Dr and she explained some things they could do to help her and she agreed. Still no smiles and still no laughter until we went to see Luke Combs, her zest for life was back, her smile was back, her fun loving attitude was back for those around her. Then this weekend kept the smiles and laughter coming. What an incredible memory packed weekend.

Thank you all for the love and prayers for our girl and our family. We pray everyday for her full healing and one more day to fight. We beg for one more smile, one more laugh and one more hug. Like is short, take the trip, say you’re sorry, show up for your people and love those that are important to you. No one is promised tomorrow.

#teamaddi #morethan4 #addisblanketsoflove #cruise #bucketlist #pediatriccancer #GMA #royalcaribbean

July 23, 2022

Tonight was literally the best night of our lives!

Over the last thirteen and a half months we have been faced with losing our daughter more than anyone ever should have to even imagine, honestly don’t even try to imagine. The pain most days is unbearable. The heartache of watching your child fight a battle so hard and with everything they have has changed us. It has rocked us to our core.

We have become incessant in finding a cure for AML, getting more funding for children, bringing awareness to the National blood shortage, having more options for clinical trials, and everything else that comes with a Pediatric cancer diagnosis like our daughters. This is truly a journey I wish on no one.

You see our girl has a bucket list of all the things she wants to do and see. One of her wishes was to meet and go to a Luke Combs concert, where he would sing her favorite song. This week with the help of some pretty amazing people this happened. Our friend Aerica and her beautiful daughters reached out to everyone they knew to see if they could get the attention of Luke Combs or someone on his team to make this so far away dream a reality for our girl.

Well, earlier this week I got a text from Aerica that said we have an incredible man who works for Luke and he asked that you email him. I quickly told Chris and then Lisa but no one else. I didn’t know if this would be able to happen and we didn’t want to let Addi down if it didn’t. As I quickly became fast friends with Clinton Brannen IV, I was blown away by his kindness and felt that it was a direct extension from Luke. He was working so hard with us, Addi’s Dr and the rest of Luke’s team to make this happen for our girl. In the middle of the week he did just that. He arranged for the trip of a lifetime. We now needed to tell the kids about this incredible trip planned and couldn’t wait to see the joy in their faces. They were all so happy. We have a BIG family and we’re able to bring half of us out to see him and his incredible team. Say what? More than just Chris or I get to take Addi. We were so thankful and honestly speechless.

We arrived at the Columbus, Ohio airport on Friday afternoon where we were greeted by a driver named Dan who took us to our hotel and then said he would be taking us to and from the concert, and then back to the airport on Sunday morning. Again we are completely blown away by how everything has been taken care of, every last detail.

Friday night while getting ready for bed my best friend from the Navy Denise Blake knocked on the door. She drove 5 1/2 hours with her son Gabe to see us. This trip was becoming more than we could have ever expected. We are so thankful and completely blown away.

Saturday afternoon we were told to be ready by 5 pm and would be meeting Dan to take us to the concert. We honestly had no idea what to expect. We brought a ton of #Teamaddi gear to share with everyone who had a hand in making this happen. When we arrived at the concert we were met by Ken who helped us get Addi to the backstage waiting area to relax and meet quite a bit of the crew. Shortly after this, we were told that Luke was coming to meet us. Another “say what” moment, we went outside and after chatting for a few minutes he took us to the back of the stage. He chatted with Addi and hung on her every word, talked about his beautiful wife, their brand new baby, his friend who had cancer twice once in the third grade and then again last year. How they all shaved their heads to stand with him and Addi talked about how all of her brothers, bf, and friends did too on the same day she lost her hair. He gave so much love as we listened and cried with the stories they were exchanging. This moment made time stand still. She was genuinely happy and so blown away by his kindness, honestly, we all were.

After this, he arranged for us to be in a beautiful suite full of food, snacks, desserts, and drinks to watch the performers. At 10:30 pm we were asked to meet his security detail so we could be taken back to the backstage area. When he asked Addi her favorite song he sang she said “better together” which just happened to be his encore song. He then arranged to take our girl onto the stage and sing to her. He asked everyone to turn on their flashlights and to sing along to our girl and they did just that. It was so beautiful, we all watched while the tears streamed down our cheeks.

Tonight the world was right and there was no talk of Addi’s cancer, no talk of dying and no talk of not making it to her 18th birthday. Her smile says it all! Tonight was perfect.

God was here with us, we felt him! In the laughter, the warm air, the smiles and the soft hugs we were given all night long. Thank you, Luke Combs and team for giving our girl the most perfect night. .

#lukecombs #teamaddi #morethan4 #aml #pediatriccancerawareness #48kidsaday #ohio

** JULY 9th Update **

We’re home and we were blessed with dinner from Cannantaro’s and our dear friend Julie Yanni-Cannataro. One of Addi’s absolute fav’s. So grateful to be home and have all of us together again. Hospital stays are really hard on our girl and honestly all of us too.

This morning the reality of going home wasn’t even on our radar. Our girl was in so much pain and getting antibiotics every four hours thru her IV. The Dr had said she would need to stay for 3-14 days inpatient and that was so damn hard to hear, Addi hates the hospital and does so much better at home. So after seeing multiple Dr’s, changing Addi’s pain meds up so she could control the pain better, being taught again how to do the multiple iv’s a day, how to clean and change her dressing on her bottom we were told we could go home. Hallelujah, we we’re going home.

We ran to the compound pharmacy picked up her new bottle of cream for her bottom $835 (this is crazy since it will only last 3 days, the other one was $412 and it will last 4 days), and then to the regular pharmacy for the additional meds while Chris packed the car so we could take her home. Once we got home at just after 9pm we all sat down and ate dinner together. What a wonderful feeling that is. Oh how we miss these normal nights of our family time, iv pole and all.

While we process the news and what they say is coming we hold onto these moments and thru our tears we smile.

Even though it’s feels like pure chaos and the unbelievable is happening right in front of us we cling to the promise of a new day! God we need you down here, please we ask you to heal her on this side of heaven.

All day long I have had a song in my head, a song I sing to my kiddos all the time. It’s called “you’re gonna miss this” by Trace Adkins

“You're gonna miss this

You're gonna want this back

You're gonna wish these days hadn't

gone by so fast

These are some good times

So take a good look around

You may not know it now

But you're gonna miss this”

I

f you get a chance, please listen to it and smile while you think about all the moments we’re clinging to right now while we make as many memories as we can. They will need to last us a lifetime.

Thanks for reading our story and loving us as hard as you all do! Forever grateful and appreciated.

Much love,

Chris and Staci

#teamaddi

JUNE 26th UPDATE -

Day 377 of Addi's journey with AML

Day +192 of Addi's Bone Marrow Transplant

Day 107 of Addi fighting cancer for the ✌ time.

The last few weeks have been incredibly hard and yet incredibly beautiful. We are fighting everyday to save our girl while doing everything we can to let her make all the memories.

Today like so many of the last few days I’m feeling stuck, I went from not being able to sleep to now not getting enough sleep. I go to bed crying and wake up crying. I can’t seem to move. Just the smallest tasks seem to feel like they will take the strength of Goliath to accomplish. While I write this I’m sitting at my dining room table unable to move.

There was a post I made about Andy and his gf Elle, the most beautiful girl with the most beautiful heart who loves our boy with everything she has. There was a comment made that was brought to my attention today and as I read it my heart sank, I found it hard to catch my breath and the feelings just became so heavy that I couldn’t stop crying. I don’t even know this woman and yet she felt she needed to go off on me about my kids. I still don’t understand why but I’ll continue to pray for her as she really needs them like so many of us do.

If she hadn’t unfriended me I would of said something to her like this. 378 days ago I never understood the people on Some reality TV shows or in just general life. But believe me now I do, boy do I now understand.

My 600 pound life

Alcoholics

Hoarder’s

Depression

Anxiety

Someone who committed suicide

For all of these feelings are valid, it’s just sometimes the world feels like it’s caving in on me, I’m not good, none of us are good. But we put on a smile everyday and fight like hell for our girl and for our kids.

The world we live in right now is the saddest it’s ever been in my lifetime. I pray everyday that Jesus comes quickly.

Then you see there are moments that take your breath away and remind you God is here and he’s close to the broken hearted. Today I drove thru in N out and the sweet girl Amber at the window said “hey aren’t you Addi’s mom, I saw you on my IG and have been following her story. She goes on to say. It’s been on my heart to pray for your family and that’s exactly what I’ve been doing”. In that moment the world was right, God was here and he showed up with the sweetest girl at in n out. Reminding me he is close and near to the broken hearted.

Thank you God for showing up today and everyday. Keep praying.

We leave for Zion tomorrow on Addis bucket list trip.

Much love,

Chris and Staci

#teamaddi #childrenscancerawareness #morethan4 #AML #Godsgotthis #pediatriccancerawareness #fightaddifight

12 Comments

Claudia Ramos

We are all praying for a miracle!

Reply1w

Tamiko Reed

God knows just what we need when we need it. God bless you and your family ❤️

Rep

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.

Much love,

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 *

BUCKET LIST

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!