Being tested for Leukemia. Bone Marrow Biopsy is at 12:30pm today. This is likely going to be one of the toughest journeys I will be on. I miss my family. Thank you for all the kind words, prayers and thoughts. 💓😥

Update: It's Leukemia. I won't know the official type until Monday or Tuesday. But, thank you for reaching out and your continued support is truly helping and welcomed. 🧡🧡🧡 💪. #leukemiawarrior. 😘

Update: I received my first round of platelets this morning! It looks like the type of Leukemia I have is AML, but risk level will be determined by Tuesday after the bone is further tested. But the flow testing indicates AML, which is good, all things considered.

Also, just thank you. Thank you so very much. 🥰🥰 You're love, support, well wishes and more are truly a huge help! Between the naps and tears and emotional rollercoaster it helps to see the huge support I have. I am in literal awe. So just thank you. Please know it does NOT go unappreciated. I know this huge support network will wrap their arms around Matt and the kids.

If I haven't had a chance to respond or like a comment, please don't take it personal. Again, just thank you. I'll keep updating as I am able. Naturally, I am being cautious with what is shared as I would hate to send something out that's utterly confusing. Also, did I mention thank you. 😘😘

You all keep me #jackiestrong!

Long post warning: We have a diagnosis!

Acute Myeloid Leukemia (AML) Monocytic Subtype M5.

This is good. This is a victory! Currently we are waiting on the Core Biopsy Results and the Genetic Testing. These are needed to determine longer term care and treatment.

Before I can start Chemotherapy, I need to be cleared to handle the treatment plan through Cardiology. My team at Akron Children's are nothing short of amazing. They are working with the Adult Congenital team here to give them the information needed to determine my heart's ability to handle the Chemo, which I am confident I can conquer.

Once this is a go... I will start an aggressive 7 day chemotherapy treatment. The PA called it an atomic bomb to the system. Then I will receive platelets and blood transfusions to help reset my body the week following, in a manner of speaking.

Please know your prayers, kind words, thoughts, actions, generosity, vibes and juju are being felt and heard. I have already been taken off of two drugs because my body is responding so very well. This is nothing short of a miracle in my opinion.

Thank you for being THEE BEST circle and supportive groups to have in my corner. I cry everyday, mainly now at how much I miss my kids and hubby, but also because of the sheer kindness, and prayer and uplifting words, and encouragement that you ALL have shown myself and my family. I literally want to thank each and everyone of you from the bottom of my heart!! Also, I want to thank Terrii Wachala for helping to organizing all of this. I cannot begin to tell you how amazing you are as well.

Sounds like today will be an "uneventful" day. Just waiting on cardio. I will keep updating as I can. Thank you again! Peace and Love. #fuckcancer

Please continue to keep me and my family #JackieStrong!

🚨CHEMO DAY ONE!🚨 #JackieStrong #forgetcancer #leukemiawarrior #nofilterneeded

Ok friends. here we go. Day one of a seven day intense Chemotherapy journey. Thee atomic bomb to my system goes off at 6:00 pm today! Still no word on the Core Biopsy and Genetic testing results, but we are cleared to go on the cardiology side.

It's been one hell of a ride, and we are literally only starting it up. I am going to miss this energy. And oh, am I going to miss this beautiful vibrant red hair, but it will be back. It might not start falling out until next week, but it will be back. 😂

Rest assured I am scared, I am angry, I am sad, and humbled beyond belief. But I am here too. I am here and I know that I am loved, and uplifted by all of you who care so deeply for my family, and our well-being. Thank you! I can not say that enough! 🤗🤗Thank you. I do hope you'll stay with me on this journey and keep up the momentum with me. The encouragement and motivation are everything! You know us Leo's need that extra confidence, LOL! j/k. Mostly. 😉

Tomorrow is my husband and I's 14th anniversary, and then Thursday is my BIRTHDAY!! 36 cycles around the sun and ready for another 60 or more! Cheers! 🥳

Peace, love and stay #jackiestrong!!😘😘

🚨 CHEMO DAY TWO🚨 #jackiestrong #leukemiawarrior #fuckcancer

So it's been a busy, and mostly silly day. It's been a busy day. So much so, I have been trying to update you guys since noon! But it worked out because so much has happened. Not surprisingly, I am handling the chemo really well. DUH! It's not in my nature for anything else - although I say this now... day 8 is only 6 more away.

The chemo drug I am on, Cytarabine, is mixed with dextrose (sugar) water. In most cases, patients develop high blood sugars while actively on chemo. This means I now get to have insulin shots with meals and get my blood sugars checked routinely, which are finger tip pokes for those who do not know. Annoying at best, but not unbearable. In addition to this, the chemo runs with Sodium Chloride - salt water - HAHA. So I am peeing every two and a half hours!! My water pill and my kidneys are keeping up with the heavy load though, so it's still all good.

Still no Core Biopsy or Genetic testing back. While discouraging, I am still hopeful for tomorrow. This, again determines the long term and next step after this atomic bomb chemotherapy series. So for now, I am going to just be on this magic carpet ride.

I am deciding, on my own terms, on how to deal with the inevitable hair loss. I will be posting daily update selfies of all the different hair styles that I love so much! Today's are all about the bangs! I LOVE these bangs. I am going to miss their personality. 😆 At the first sign of a big chunk of hair coming out (likely after day ten), I am going full GI Jane. The wonderful nurses here have already agreed to help record. 🥰🤩😎💪✍️🦸‍♀️

This ties into the #jackiestrongchallenge because it takes me about 35 minutes to do my hair and make up and it is a cathartic process because I am actively saying goodbye to my great hair. It may seem like I'm a glutton for punishment, but I am really just spending time with what I feel was, and IS such a huge part of my life and my identity. That sassy ass red hair! It's certainly a fitting challenge. It's a tough thing to grapple with so why not do it slowly! 🤷‍♀️ And on my own terms, grief is a process.

Next, my beautifully thoughtful sisters, Melissa and Brittney, gifted me a Light Board for my birthday. It sits in my window, so anyone that comes driving down Cornell off Euclid can see this displayed, hopefully, along with my flamingo and palm tree. And it has a remote! WOOT WOOT, they really know how to plan ahead. Like those days when I am too weak to get up and turn it off. BOOM! I have a remote. So thanks sissy poo's.

And of course I HAVE to have fun and poke fun at the intense isolation. I am hooked to this IV pole for 6 more days. So, Wilson is coming with me. 😂🤣😎 Seems like the perfect chap to have around.

Again, I cannot thank you all enough for being here with me, even though you are not here in person with me. Normally, I would be getting slews of visitors and feeling connected with hugs and boisterous laughter to lighten the situation. While I don't have this in person, your texts, FB messages, memes and more fill my day with such laughter and comedic relief from what is still a terrifying journey!

I apologize for the delay in the second day chemo therapy kick off post, but know that I love you all! And my sister, Melissa and I's birthday is in three hours. And for me it's THEE best holiday. I was never supposed to live past 6 months, and here I am about to CELEBRATE my 36th! 🥳🥳 With the most amazing people (virtually), during the greatest plot twist of my life (Thanks babe for the idea🥰😘).

Please wear orange tomorrow in honor of the challenges I am facing. It really helps to feel the love and support. #jackiestrong Post your pictures here if you feel up to it. It would be great. All I have is this lovely purse for which I carry my telemetry (heart) monitor. My mom brought this to me because it's an almost perfect fit, and it will help when trying to manage steering an IV pole. I was wearing this before I even knew what the ribbon color was for Leukemia. Ha, who knew!! So I am always wearing orange!! 🧡🧡🧡 I will hopefully (virtually) see you all tomorrow!

Peace, love and stay #jackiestrong. Love you all!!🥂🎂🧡

Ok UH... I see you! Just brought to me by room service! 🤩😍🤯🥳😎🥰

Decided to leave the room for a walk. Got a wonderful birthday drop-off surprise from my friend Kristi! Complete with electric razor! 😭🤩. As you are not allowed to have blades and pins in the patient rooms due to low platelet counts. Eek! And the Art therapy department came by so I can make message gift boxes for the kids today! It's been a busy day but I am so very happy I have the greatest friends and family and just wonderful nurses. Today has been an ebb and flow kinda day. Lots of ups and downs, lots of intense emotions.

But you guys are keeping me so lifted in love. Thank you! 🧡🧡🧡🥳🤩😍🥰😘. #JackieStrong #fuckleukemia #jackiestrongchallenge

🚨CHEMO DAY FOUR UPDATE🚨 #JackieStrong #leukemiawarrior #fuckcancer

MY. BIRTHDAY. WAS. EPIC!!! Thank you all for the videos, words, photos, and just all around uplift. I cried so many happy tears, I thought I was dehydrated. So thank you! I apologize for not getting an official day three update, the hallway pic cool though?! Right. LOL. Thank you for the thoughtful gifts, cards, and balloons to help spruce up my room. Pictures will be in the comments. 😁

FINALLY! Another portion of the testing came back and I can include MLL to the list of the over all diagnosis. So officially, I have AML subtype M5 and MLL+. The MLL added is neither good nor bad, it's right in between. And no other "bad" stuff has come back. So we are still good there. Leukemia messed with the WRONG gal! BOOYAH!

We are still moving forward with evaluations for a me to receive possible Bone Marrow Transplant. This is not officially on the table, but it is certainly not OFF the table! We start with siblings (Thank you Melissa, Brittney, and Jason - all of my siblings, for agreeing!!). 😭🥰 HLA Typing has already begun. If they are a match, then awesome! If not, then we can open it up to others. I don't want to overwhelm the Transplant Coordinator, just yet, as I know I have THEE MOST DIE HARD friends and family a girl could EVER ask for! The inquiry from all of you alone, is just so heart warming. Thank you! Makes me wonder what I did to deserve such amazing people in my life!! 🧡🧡🧡

Chemo... this is going really well!! I finished the third dose of the Idorubicin, which was the one with the most potential for heart toxicity. My heart function is good (I am monitored on constant heart telemetry - remember the orange purse, LOL). Now it seems to be smooth sailing for the remainder of the chemotherapy (Induction Phase Round). I am getting ready to be hooked up to CHEMO BAG #4! Say what?! HALF WAY THERE! Well, in this phase. Next week WILL be a different story but I am enjoying this phase while it is still pleasant.

Otherwise I have been enjoying the relaxing atmosphere here today. I have been keeping busy, but can you believe I have yet to turn on the TV to watch a movie?! I know right. I have been watching the videos and trying to keep up. You all are super stars and have served as a rock to lean on during these stormy times. So again, thank you! 🥰🥰🥰

Finally, as most of you know I am grieving my upcoming hair loss. It hasn't happened yet, but I have been doing all the hair styles I love! This is so bittersweet! I LOVE my hair Ya'll. I love all that I can do with it. My red hair is part of a deep cultural identity that I am currently grieving. So, I spend a lot of time doing my hair and makeup during the day making sure I spend extra time just taking it all in and taking pictures of what my face looks like - eyebrows and all. When it comes time for me to have to paint them back on, I will have ample pictures to reference. In Costume Design, it's all about those research photos. HA! And it's no different for hair and makeup! 🤪💄💋🦸‍♀️ #takethatcancer #youpickedatechie #winning

Peace, love and continue to be #jackiestrong! Cheers!🥂

~Jackie

PS: This is also posted on the Don't Be Strong Be Jackie Strong Page. In case you wanted to catch it there instead. 🦸‍♀️🧡🤪

No filter needed. Playing with new lights while battling Leukemia. Want to get all the angles!! 🧡🧡🧡

🚨CHEMO DAY 7 UPDATE🚨 FINAL DAY!! #jackiestrong #leukemiawarrior #fuckcancer

So, the last several days have been very low. I knew this was coming. The days are still low and are likely to get more so as my counts drop, as expected, even more. This is what is supposed to happen, but it doesn't make it hurt, ache, and feel any less painful. I LOVE seeing all those cat posts, the photos of everyone's families and days. I see them. I may not always respond - or chances are I responded as Be JackieStrong. Oops, LOL. But know that I am here, silently watching during these rough days I am in. AND THANK YOU!! For always being there. ☺️

The genetic testing came back!! I have been found positive for the genetic marker/mutation called FLT-3TKD (FLT 3 Transformation). This is good. It's a mid level risk leukemia that is actionable! There is a drug that can help target those specific cells! 🦸‍♀️🥳. So, today, I will be starting another chemotherapy drug called Midostaurin, for the next 14 days. This drug naturally keeps my counts really low. So I will be here for the time being, getting all the blood, platelet, and immune system support I can. I will then do a bone marrow biopsy on day 21! I am confident that the Leukemia cells will be LONG GONE! And I will be headed wonderfully in the final stages of whopping this cancers butt!

Not much for taking pictures these days, as I am mostly too weak to hold my phone, so I nap all day. But, I was able to snap one of the blood work, I always get. It helps when you have a line they take it from instead of getting poked.

Thank you again for continuously being on this journey with me. You'll never know how much I appreciate each and every one of you!!

Peace, Love and continue to be #jackiestrong! Cheers! 🥂

~Jackie

I want to talk about the idea of being invincible. Growing up with a Congenital Heart Condition, at least for me, you have this view of it being the only thing you will ever encounter. I was, for instance, always… the Heart Kid. I am no stranger to medical crisis and chaos. I was a make-a-wish recipient at four-years-old in 1989! I went to Disney because the prognosis was not great then. My heart condition in many ways defined who I was or would be. I would go on to have seven heart surgeries and I am currently on my 9th pacemaker. I fought to give birth to four children, all while experiencing heart-related complications. I have tackled great things all under the guile of safety, of that I will only ever have to tackle heart related problems. I continually and consistently beat the odds. Every time.

I feel as if this thing happened. I became so used to dealing with the same issues, I obtained this sense of invincibility through the comfort of the condition I knew so intimately well. Thankfully in that comfort, I gained a sense of how-to self-advocate, self-assess, and speak up when something is JUST. NOT. RIGHT. This ability saved me from a more severe diagnosis. And quite possibly saved my life.

Truth is… you can be more, medically speaking, than a heart kid. Who knew? You can be a Heart Kid… and a Cancer Warrior. So, while I grapple with this truly surreal sense of being something more than a Heart Kid, I am also grappling with what it means to have Cancer; Leukemia to be exact. Both are very different. Both are very severe in their own rights. I hated getting my blood drawn and IV’s, so I became a phlebotomist, and now I have BLOOD CANCER. Now, you have to see the irony in this!!

So, in the end, I DO NOT think I am invincible. No. But, I do feel there are many things that I have encountered and experienced, that have given me greater strength to persevere through another great adventure. And I am giving myself extra love and support so that I am able to receive the time and energy needed to manage a new sense of identity in my crazy, wild medical journey that I am continually on.

Currently, this means the use of A LOT of laughter and humor.

Thank you for being on this journey with me. I have a lot to say and let out. I have great help from Terrii and Elle to help manage the Facebook page “Be JackieStrong”. I will be posting more candid photos there for the time being and post larger updates on my personal wall and the other page. I love you all so much, and I couldn’t ask for a better support group than what you have graciously and generously given me to help me float the tides of grief, pain, love, laughter, loss, joy, faith, and hope.

Peace, Love and continue to be #JackieStrong! Cheers.

Love,
Jackie

🚨LONG POST WARNING🚨 But it's worth it. #jackiestrong, #leukemiawarrior, #winning

A friend of mine raises Monarch butterflies with her two kids. She and her daughter captured video of a butterfly emerging ever so delicately from its chrysalis. I watched the video in awe of the excitement for them as they finally captured this event on video, together, in its entirety. Such a sweet, tender moment. I cannot help but feel somewhat connected to that special little, gorgeous, Monarch Butterfly.

As many of you know, or may be just finding out, on July 24th, I was diagnosed with Leukemia, AML-MLL+-FLT3 transformation – to be exact. Cancer. About a week and a half ago, the chemo had started to take dire turn on my health. Massive fluid overload, failing kidneys, a stubborn Iliad, my heart gave in and went into Atrial Flutter. My heart was effectively beating about 200+ beats per minute (bpm). But, my pacemaker, doing exactly what it is supposed to; keep my heart steady at 90bpm. But the entirety of it all was taking a heavy, heavy toll on my body, internally and externally. I desperately needed to get back into normal sinus rhythm – for me is set between 70-120 bpm.

My body would not handle a cardio-version (a procedure in which they shock the heart back into rhythm) in its current state. I sat in Atrial flutter for nearly five days. I was at death’s door. I was in and out. In a normal environment no visitors are allowed. They let my husband, my sister, and my mom come on a rotational basis. Scary and fear, does not even begin to cover what myself and my loved ones experienced.

Finally, my kidneys started to respond to treatment. I was bed bound; I was weak. But, finally getting stronger. I perked up for moments here and there. Then the news came that I was strong enough for the Trans-esophageal Echo and the Cardio-version, it felt a sense of relief, but scared because the last was one was a bit of an epic story – which I almost didn’t come through. On Tuesday, I would have the procedure. Matt paced, but never left my side – he really is the best husband a girl could ask for. The TEE and cardio-version were a SUCCESS!!! It had been a few days since I really felt anything but weakness. Up until this moment I focused so much on just staying alive, just keep breathing (Yes, absolutely spoken like Dory). I started to feel again. I could breathe. Really breathe. The pink came back to my cheeks. I was alive. I had done it.

Through this, at one point, my sister recognized it was time to lose the hair. She tried to comb it (it was in a ponytail), but there was much that was already not attached. I was so weak; I really felt nothing. I said just do it. She, the wonderful soul that she is, shaved my head. The part of me that I was so connected with. My RED HAIR. I felt nothing. It was gone. That is strength too in my opinion. Her ability to take on that burden for me and still do what she does every day. She is a wonder woman in her own right. A day after the procedure, several days after having my head shaved, I asked my mom to just take a picture. I wanted to see it. The picture was, and is, so visceral to me. I cried. I grieved, hard. I could finally feel and begin to understand what had just taken place the past week and a half. To put all the broken pieces together. The enormity of the week prior came to me with the power of Niagara Falls.

I am out of ICU and back into a room on Seidman Floor 3 as of today, a just mere days from hanging on to dear life. So surreal how quickly things can go so wrong, and turn around, in seemingly the same amount of time. The welcome party was so heart-warming. A HUGE, HUGE, applause to the nursing staff of Seidman ICU, and Seidman 3. These teams are a true meaning of caring, kindness, and have been great support and cheerleaders for me here too! Obviously, my team – literally like 5 teams – of doctors and residents working hard at fixing the problem and getting me out of the woods. They do not give up. They are cautious, but aggressive, understanding, and really listened to me or Matt when we had questions or concerns. We always felt informed. Even when I could not be, Matt was. So, a big thank you to all those here. Matt and I have such gratitude for the teams here. They collectively pulled me though the clutches of the grim reaper. Thank you, does not seem like enough, but it is genuine from Matt, myself and my entire family.

I survived, again. I am breaking free of my Chrysalis and emerging as a stronger person than I was a week, a month, a year ago. I have been built back up through your prayer, thoughts, well-wishes, cards, memes, Spike, emoji’s and dad jokes. I may not have responded, but I glanced, I saw, I received. I still find myself overwhelmed with emotion as I think about the amount of people in my, in our, corner. I will never be able to repay, thank, appreciate any of you as you properly deserve. Thank you, for being the light in the darkness, however dim it might have seemed. You kept me going. You kept me alive. I am sitting here sobbing because I am so filled with such gratitude and love.

I promise the updates will be better, shorter, and certainly hope to be more frequent. Today I head into another bone marrow biopsy to check to see if the Leukemia cells are still there. But, that’s not all (think Price is Right), I also get to have a Lumbar Puncture (Spinal Tap) and an injection of low dose chemo so the Leukemia cells do not target my brain. Yeesh, like I need that!! Stay tuned and in my corner. We can beat this.

Peace, love and continue to be #jackiestrong.

~Jackie

🚨🚨I. AM. GOING. HOME!🚨🚨#jackiestrong, #leukemiawarrior #wearebeatingthis

After five weeks of not seeing my precious children, of chemo, of death defying diagnoses, and just a lot of stuff... I am getting discharged tomorrow!!🥳🥳🥳

I am still waiting for the Bone Marrow Biopsy results to come back. This ultimately will decide where the treatment goes. Two potential roads: Bone Marrow Transplant OR (the one we are hoping for) Consolidation Chemo. I will get into more of what that means once I get results. Right now I am living the high of being able to be home with my kids!! 😭😁😍

Also, on another SUPER positive note, the wristband money went directly towards purchasing a recliner for me to sleep in at home until I get strong enough to get in and out of bed. Sounds weird, but having a recliner will help. So thank you for all the continued support! It seriously is NOT taken for granted. You helped make this happen. THANK YOU! I love seeing all the wristband pictures and posts. I warms my heart. I see you Clayton. 🧡🧡🧡

Thank you again, please stay on this journey with me. While I am going home, I am not fully through this thing. So, I will continue to update and let you know, what we know. This is a HUGE VICTORY!! Let's just revel in the glory of the good news for today!

Peace, love and continue to be #jackiestrong.
~Jackie

Yup. They definitely missed me as much as I missed them. I'm not ready to have them leave my lap. 🥰☺️😭🥰. Oh how I loathe my bladder, 😂🤣.

🚨🚨UPDATE 🚨🚨

Hey everyone! I sincerely apologize for going radio silent. Last Monday Matt and I saw my Oncologist. GOOD NEWS: I AM IN REMISSION. YAY! 🥳. This was step one. I needed to get into remission in order to continue with treatment. But, just as fast as the good news came, the bad news came... I need a Bone Marrow Transplant in order to fully kick this things ass. Matt and I needed some time to process. Considering the first month in the hospital, we obviously had/have deep concerns moving forward. We reconnected with my Akron Cardiology team which makes us feel better, immensely better.

My new long term Oncologist that we met with is in close contact with my Akron Cardio team which also makes us feel better with the Oncologists too, he seems to get it on a big picture level. Additionally, they are moving forward with deciding which sister would ultimately make the best match. I am not sure how they make this determination. I didn't ask either. Both of my sisters are amazing and beautiful people, and I would be honored to have either of them serve as my donor, but I can only have one.

I am back in the hospital (sorry for the lack of heads up). This is my first and only round of Consolidation Chemo as I move right into Bone Marrow Transplant (BMT) in the next month or so. I get discharged tomorrow though. The BMT on the other hand is another month long stay. So it will be hard, but thankfully I had a little bit of practice, and I have all the wonderful things people sent (cards and more) to hang back up for motivation. I can move back in with bling. LOL.

Otherwise, things have been steady these last two weeks. Getting stronger by the day. Actually felt strong enough to go camping with the family over labor day weekend. I stayed in the cabin with the my mom and Charlotte, while Matthew and the boys stayed in the tent. It was great to get out, challenging, but otherwise I had a wonderful time. Got home with just enough time to head back in to UH Seidman, good ol Floor 3, for the consolidation chemo to keep me in remission.

Again, thank you for being on this journey with Matt and I. I know I have to catch up on a LOT of thank you's! Like Terrii Wachala, Cat English (thank you for the wine - haven't had a chance to enjoy too much of it yet, but I LOVE moscato!!), Kristi Serrano Bilsza and Daniele Greene for helping me get head wrap material, Pauline Guerra-Vitko, Don Guerra and BettyLou Hruska for helping with the kids - of which we will need a lot more help as I have appointments three to four times a week, and thank you to Michele Spatny for her efforts as well! I know there are SO many more people to thank personally, like of course my sisters and my mom. If I missed you I promise I mean no disrespect. Matt and I thank everyone who has come to give food and check in (Cindy Scott Weaver) or just sit with me/us. It's helpful. Chloe Michelle Smith & Ashleigh Shumney - thank you!

I think that's all for now. Again, thank you, from the bottom of our hearts!! Peace, love and continue to be #jackiestrong & #guerrastrong.

~Jackie

🚨I'm home, again!🚨 #jackiestrong #leukemiawarrior

Feeling pretty good. My counts won't drop from this round u til later this week, but I'll take the energy while I have it.

Got some wigs that I ordered over a month ago. I'm digging this one. They didn't give me lace front like I wanted, but since it's a browns game (yes, I know we lost, but I'm still reping) I figured why not have some fun! Digging the Platinum Blonde, but still miss my red. Felt good enough to do nails and makeup too! Lol.

Day one check up (two more to go this week). We are good! 🥰🥳🦋🧡. And I drove today! Say what??!! Lol

Got to get on a call for Creative Arts too! I miss my work family like crazy!!!! 😭😚😁. I'll be back soon enough though. 🥳🤩. #jackiestrong #leukemiawarrior #guerrastrong

Between cardiology and oncology, it's like an epic unknown battle of the Titans. A tug of war over life and death. I just need my body to hold out. I am strong-willed, generally positive and stubborn, but that doesn't mean it's not scary. I'm finally home after a brief, two day stay at the hospital; back with our kids and wonderful husband. #timeisprecious #jackiestrong #guerrastrong #leukemiawarrior #itsallforourkids #wearebeatingthis

Boys' haircuts for school tomorrow, then cardiac echo for bone marrow transplant workup at 1. Life doesn't stop just because you have cancer. It may seem like it... But it doesn't and shouldn't. #jackiestrong #ilovemyboys #leukemiawarrior

Waiting on transport to escort me to my appt. Traffic isn't terrible, but rerouting around it is just tedious. Thought my appt was in seidman... Turns out it's on the other side of the hospital. 🤦‍♀️🤷🤪

Update: 😭😣😵 They rescheduled my appointment for Friday... Another wasted day at UH. Yesterday was a waste too because they scheduled the wrong test. 😔. This is exhausting. On another note, thank you for all the well wishes... Let's table this till Friday! #jackieswarriors #jackiestrong

Bone Marrow Biopsy Day... T minus two hours. And anxiety... GO. 😬🥺😥.

Bone Marrow Biopsy Time! So thankful for this man! I love you. #jackiestrong #leukemiawarrior #wearebeatingthis

I may be out of breath, fluid may be in my lungs, my legs may be swollen and I may not be getting great sleep... But I'll be damned if I don't enjoy some of this good weather! 🤪💪

Having a girl's day with my mom and sister! 🥰😁🤩😍😘💓💅

Wish me luck! Cardioversion is about to commence. Cue ACDC's Thunderstruck... And here we go!

See you on the other side.

TEE and Cardioversion went well. I am back in a normal sinus rhythm!! 🤣, You wouldn't know it from the pic but I am still a bit loopy waiting for my next appointment. Getting lunch... Hopefully it stays down. Can't wait to get home.

🚨🚨The time has come folks!! 🚨🚨The moment we've been talking about and anxiously awaiting since July.

My sister, Melissa Loomis-Diamond, started her prep today for the collection of her bone marrow. They took 15 tubes of blood from her today 😬. I seriously can't thank her enough. I have my prep on Monday. Then I get admitted on Thursday of next week. 🧡🧡🧡 I can't believe it's finally here. 😥☺️ And it came quick too as we originally thought it was going to be in mid to end of November. Even though we knew it was coming, I still don't feel ready to be gone from my kids and hubs for another 6 weeks!!

Plus this is the big one. The chemo meds are harsher, with full body radiation, and there is said to be intense bone pain...😳🥺. This is on top of the increased nausea and general sickness that going through this causes. (Sigh). Plus taking into consideration all the cardiac and kidney stuff. We are remaining positive though. We have to be.

We have been focused on trying to pack in all the memories! My sister and I took all the kids to the Halloween Drive Through at Lake Farm Park, which was wonderful and worth the money and drive! I got to visit my sister Brittney and the Bowman Clan! Pumpkin carving with the Fallot's, Knights and Paul Bartok, with the most epic fire 🔥! And my mom hosted this AMAZING pumpkin festival bonfire with all of my family so that I see them before going in! It was at Rockin R Ranch in Columbia Station and was incredible! The kids had so much fun (they even got to go on a hayride, ride ponies 🐴🐎 and pick out pumpkins 🎃). I'll post pics when I can of everything, but I'm still trying to soak up all the memories!! I am really putting the boost of energy and good count numbers to good use. So many pictures!! 😁🥰🤗

We are thankful for the help organizing these events and what not. We could never afford to do all this stuff right now. Mostly it's my mom and sister, but still. Matt and I have been been out of work and bills still need paid. The incredible Go Fund Me we had got us this far and more, as we used it for medications, bills and co-pays. We did get approval for medicaid so that will be helpful, I hope. And we are working on getting cash assistance, but it hasn't come through yet. I finally started getting my disability through work, but it barely covers our mortgage for the month. I know there are programs that help and we are looking into all of these. We did finally get the approval for SNAP, which is a huge weight lifted. After transplant I will need 24-hour care for at least 100 days. So Matt will continue to be out of work on FMLA (as my caregiver). 😔. It's a stressful situation to be in.

You guys know how independent I am. Matt too. And relying on so many people is a hard thing we both have had to learn. It's tough. When I got off social security three years ago it was the best feeling. To not have to rely on it was such a good feeling, but here I am. Here we are. I feel these programs exist for these moments, these situations. But it can feel defeating. Still we are moved by all those who have reached out, sent cards, snacks, texts and everything! I just ask to please keep it up, it's helping!! Please don't lose momentum with me. I'll, no we'll... need this wonderful support team more than ever these next two months, please. It's so hard to be away from my family for the holidays. I've never missed a Thanksgiving or Christmas with them. This will be the first. Being home for Christmas would be a dream come true. To be in remission and home forever 🤞🙏. A Guerra Christmas miracle.

I'm sharing the Go Fund Me in the comments. Please don't feel obligated to donate but if you can, we do appreciate it. Anything helps. At this point, it all goes towards our ever stacking bills. Please know that we know how much people have given, through a variety of ways and methods, and we are so so so very grateful for this, so again, please give only what you can if you can. We sincerely love you all so much!!!! 😭😭 And we couldn't ask for better friends and family. So THANK YOU! TRULY THANK YOU! Also, send all the positivity that I'll be home for Christmas. 😁☺️❄️🎄🎉🙏🤞💪🫀🩸🧡🦋. #jackiestrong #fuckcancer #leukemiawarrior #wearebeatingthis #guerrastrong #bestsupportteamever

Pulmonary Function Test. Another appt, another day closer.

Goofing around while waiting for Charlie to finish dance! 🤭🤷🤣😂🧛🦇

When your cat has his friend stop by! 😂🐈‍⬛ He stole my friend, lol. At least he knows how to pick em. I am so thankful for this beautiful soul. So glad I get to see Terrii before I go in! 🥰😍😁😌.

Shout out to my hubby, Matthew! Knowing that I would miss Thanksgiving he surprised me and the kids last night with this amazing Thanksgiving meal! Haha, it's chicken instead of turkey, but I didn't care, it was so good too!! Smiles all around.

He really went above and beyond here. I love him so much. 🥰😍☺️🙌😘😘🦃🐓

So happy I'm able to vote today! Even brought a sidekick. Two days left before transplant time!! 🙌🥰😌☺️

I'm so so so happy my sister is able to donate. She truly is a blessing. We have our differences, but we have gotten really close in the last several years. I'm really happy to be so close to her and my other siblings. 🥰😍😘🙌😌

🚨Happy Last Day of Chemo🚨

Sorry I haven't posted an update over the weekend. It was pretty rough and I only just started to keep liquids down yesterday. I love you guys! Thanks for all the well wishes.

Also, if all goes well I hope to go live today at 7pm. ☺️🥳💪. Just to update about what comes next. Miss you all, love you! Till then. 🎊🎂

#jackiestrong #guerrastrong #leukemiawarrior

TBR (Total Body Radiation) is a go and happening now! 😘😘 My sissy is getting her line placed too! ☺️🙌🎉🎊🎈🥳🧡😌💪

Transplant medications. This has been my daily morning dose now for several days. Some of which I take three times a day. Others just twice. But the morning dose is always the biggest.

Chris, my nurse today, has been going over the other medications I'll be given as a premedication to receiving the new stem cells, like a beefy dose of Benedryl, and other nausea meds and even an extra diuretic to keep the fluid away from my heart. I'd be lying if I said I wasn't nervous, but it really seems like this team has it on lock this time around.

I may go live once the transplant starts. It's pretty uneventful as it's an IV bag, but it's everything to me. It's my rebirth-day. Thanks to my sister, I get to live a longer, more fulfilling, life with my family and friends! There isn't a gift I could give her in the world that could make up for that. She wins Christmas forever!!

Also, just got word that transplant is a go for 9:20AM.

Houston we have a go for take off.

I'm on a lot of premed drugs. I'm pretty loopy, in fact I'm impressed I am typing this right now. 🤪🤣😂🤷

See you all on the flip side. 🎉🎂🎊🎈😘🥳🧡💪

🚨🚨UPDATE🚨🚨

The Stem Cells have started grafting!!!!!!!! I have counts. ANC is 290, WBC .4! 🥳🎉🎊😍🚨💪🎂🦸🙅🦠🙅🙌🧡

My ANC has to be above 1000 in order to leave. We are only at 290, but it's ok! My doctor's are confident that I will be home by early next week!!!!

Don't let this pic fool you!! This last week was utter hell. The bone pain is intense, super intense. But thankfully I have a pain management button that I can press every six minutes. Shut the front door!!! So I'm finally getting some sleep, and I'm eating a bit more but not much more.

Also, here are the decorations that my Mom and Daniele brought to my room.

This is my new morning cocktail of medications I get. I need each one of these to protect or prevent or treat something my body needs getting rid of. I only have three more to add.

The good news is that my ANC is up to 2,000,!!! That's amazing! So now it's just getting everything switched to pill form and making sure I can keep it down. We are still pulling for a Monday discharge!!! Fingers crossed!!!

#JackieStrong, #guerrastrong #leukemiawarrior

🚨GREAT NEWS🚨

It is with such gratitude and excitement that I announce I am coming home today 😭😍🥳. I can't wait to hug my kids and Matt. This has been such a hard journey. And I know it's not over, but I'm going home! #JackieStrong #BMT #sistersavior #leukemiawarrior 🧡🧡🧡

This is just another reason I love being home. My fur babies. Jonah and Milo... "Two best friends... That anybody could ever have". Lol.

Ok #JackieStrong warriors. Tomorrow is another bone marrow biopsy. This should be the one that tells me I'm Cancer free!! Do what you do best and send all the love! 😘🧡💪

🚨🚨 UPDATE 🚨🚨 LOVE RECEIVED!!! ☺️🧡🙌🥳

Bone Marrow Biopsy went well. It was the least painful so far, which is good. I'll get results in 3-7 days (oh the suspense!). But I'm hopeful. My platelets have been above 50 for over a week so Dr. T said he's confident the platelets have grafted! 🥳 I've been pretty consistent about needing magnesium and potassium, as well as blood. He said blood is usually the last thing to graft. But we're headed in the right direction. 💪.

Cardiology wise, my atriums are now beating at between 500-600 beats per minute, 😱😬. But no worries because I have a pacemaker that beats my heart for me at a steady, force paced, 80 bpm. Even so, as my numbers become more stable and get a bit higher we are talking another Cardioversion and then a possible Oblation to help with the Atrial Fibrillation.

So friends, while I may be headed towards being cancer free, the chemo and meds did a number to my heart that now needs to be fixed or regulated. I think this is all likely to happen in January and the recovery for those are usually pretty short. I'm confident with my team though. Dr. M is amazeballs.

My appetite is still shot, but it's slowly on the mend. The chills and shakes are getting fewer in between. And to date I've lost about 50 pounds. Otherwise, I'm happy to be home and I'm happy to have some energy back. I'm happy to be getting more consistent sleep too. Tomorrow is day 40, post transplant, of 100. I can't wait till that day comes. I can't wait for my hair to grow back too 🤣. That will take the longest of course, but oh well. Till then it's wraps and hats. 😏🧡.

Thank you everyone for always being there. For always cheering and rooting for me. For keeping my family in your thoughts, especially during such a difficult time. I'll never be able to have the right words to express the sheer gratitude we all have. Truly you have help make this season bright. I love you all, so very much.

#jackiestrong #leukemiawarrior #guerrastrong #bestsupportsystemever #chdwarrior #grateful

From July to today. 🤣😂 Weight loss program NOT recommended! 🤣😂😘😏🤭. But I am happy that the lost weight is better for my heart... Which is still in A-Fib. And the word Medium hasn't been in my closet in YEARS! 😳🤪☺️.

Now to be cleared to start toning this up. J/K it's still gonna be a minute.

#PostTransplantDay60 #JackieStrong

Post BMT day 65!! Between appts, at good ol' Seidman, I contemplate the idea that I'll get to return to work (🤞) in just over a month!!

Good Check Up's so far! Still getting infusions each appt, but those will likely slow. Next step Cardiac optimization. 🤪🫀❤️

Every Sunday night, as per the ritual, I refill this pill case. Over the last 6 months meds have come and gone. Doses upped or lowered.

But each time I refill this pill box, I take a moment to check in with myself. Each week I grow stronger. Each week I can do more than I did the week before. Each week comes with increased energy and the profound understanding...

That I am still kickin' this terrible diseases ass!!! 💪🩸🧡😍

#jackiestrong #leukemiawarrior #leukemiasurvivor #AMLsurvivor #fuckcancer

Now is good a time as any!!

Introducing (officially) Miss Zoey Wednesday Guerra to the Guerra Clan. She arrived December 19th and is now 12 weeks old. She is adjusting nicely and we all just LOVE her.

Milo (our Kitten we adopted in August who is 7 months old now) and her are the best of friends. Jonah (black cat) our fur elder babe is still not so sure, but he tolerates her nicely, 🤣, so long as she keeps her distance. Her are all our fur babies now.

WELCOME TO THE FAMILY ZOEY... And MILO!!!

Love having my taste buds back on ANY level. Also love that my hubby is a wonderful chef that makes me ALL the delicious foods. 🤤Mmm butternut squash and pomegranates.

#jackiestrong #leukemiasurvivor #chefhubby #mymanisthebest #healthyeating

For no particular reason. We just started taking selfies. 😂🤪. #guerrastrong ♥️

After months of having graduated with my masters, I'm finally putting this well-earned degree in it's frame!

#mastersdegree #highereducationadministration #tiffinalumn #jackiestrong #leukemiawarrior #2020graduate

So... Chemo, radiation and the sort did a number on my eyes. Get to rock these bad boys a bit more now.

#jackiestrong #amlsideeffects #leukemiasurvivor #coachglasses

Over the years this man has been by my side through it all. The good, the bad, and the ugly. Thanks Google for showing me our memories together. Although the pics presented in opposite order here, him and I have gone through more than any couple should. 🥺🥰 #insicknessandinhealth

I love you so much, Matt. I know I am a week early for Valentine's Day, but I just needed to let you, and the world, know how much I love you and I am so happy you are with me on this magic carpet ride. 😘🎉🥰💐😍🤭

Dr appts have snow days too!! 😂🤭🤷. Next appt is Thursday, along with another Bone Marrow Biopsy. 😬😒. #100days #jackiestrong

Gotta say, I'm super proud of my hubby! After getting our driveway cleared, he helped the elderly couple across the street who had been struggling. Then helped the neighbor next door. 🥰🔥 He's so caring.

But no good deed goes unpunished... Right?! Snow blower broke halfway through the third driveway. 🥺😔😭. So... Anyone know someone or someplace that fixes snow blowers?? 🤦😫🤷.

Q and Matt are finishing the driveway. Then we're all gonna warm up with some hot chocolate and watch a movie. #guerrastrong #snowday

Happy 100 days post Bone Marrow Transplant to me!! 🥳🎉🙌

The risk of infection may go down some, but I'm still not out of the woods yet! I'm so happy and proud to have made it this far! Thank you to everyone who has been on this journey with me! I honestly love you all so much. Thanks babe for the epic dinner tonight. I love you! 🧡

#JackieStrong #leukemiasurvivor #AMLsurvivor #CHDwarrior

Since the beginning of my journey, my hair has been a source of... Some intense feelings. My daughter, who is only 4, seemed to struggle more than the boys did. At first she didn't like seeing me on zoom calls in the hospital, which I understood, but it still broke my heart.

This Barbie is more than just a Barbie. It helps little girls understand that bald is beautiful no matter the circumstances. I will say my niece got me a bald barbie shortly after my first round of treatments and Charlotte and I still play with her. But, the fact that this is connected to research makes it that much more special. And it comes with wigs and a hair wrap! So amazing. ♥️🙌😘😍.

So happy to have this for my daughter. 💓💓💓. Whoever sent it... Thank you! #JackieStrong

It's finally happening!! Everyone say goodbye to this wonderful friend of mine... The PICC line!! 😍😍

It's such an amazing feeling. Another testament to being on a great path of recovery and healing! This PICC line has been with me since day two! I have TERRIBLE veins and this thing has been a literal God send. Through chemo, blood transfusions, magnesium and potassium infusions to my actual Bone Marrow Transplant! It's bittersweet, but highly welcomed. So happy right now! What a great day! #JackieStrong #leukemiasurvivor #buhbye

Oh... And I have hair! It's super short, but it's there, and it's still red, a darker red, but still red. 🥳💇🎉🧡

We bought a trailer! We're excited to park this baby at a campground this Summer and make all the memories. For $2K we feel we got a steal of a deal. #RVsummer #GuerraStrong #DonorSister #LeukemiaSurvivor #ThundahSistahs 😉😏💓

So, what's your favorite place to go camping?

This is Deonna! She is amazing. She helped me feel sexy, vibrant, and feminine again all with her sweet skills as a hair savant! Thank you, truly. You have a gift dear and I'm happy I got to experience it!!

#JackieStrong #shearsandbeards #leukemiasurvivor #guerrastrong

Ok friends. Matt and I have both tested positive for COVID-19, 😔😒😥. The kids seem ok. Q might get tested but we're waiting on directions from his doc. The school district has been contacted along with all those that needed to be contacted. We are following ALL CDC guidelines.

I have congestion. And some light body aches. Nothing too severe. Over all, I feel good. We're staying cautious, and my oncology team has ordered and given me a Covid antibody therapy. I received that yesterday. Plus, while there, I was given this neat mobile Heart/O2 Monitor that keeps track of me too! (See pic) I feel pretty well covered. Matt is getting a bit harsher symptoms but he's doing good. Head and body aches, some congestion too. Q was having some congestion on and off the last few weeks. So, he's feeling much better now, but what we thought was a slight cold, may have been Covid all along. But again, overall the Guerra's are hanging tough and remaining positive.

It's important to note: NO ONE HAD ANY OF THE TYPICAL COVID SPECIFIC SYMPTOMS. None of us lost taste or smell. Aside from congestion - and me being tested all the time for anything and everything at the Seidman Cancer Center - we might never have known we even had it.

Please be careful out there. I received my second vaccine on April 16th. And still got COVID. 😕🙄🤷. #JackieStrong #leukemiasurvivor #guerrastrong #covidsucks

So, this past week has been a roller coaster. I'm back at UH Seidman Cancer Center for GVHD of my gut & liver. I've been told everyone that receives a BMT gets some level of this. And some GVHD is actually a good thing. However, it's painful. I'm being monitored closely. And should be ending this visit either tomorrow or Monday.

I suppose I'm just asking for positive thoughts, prayers and good vibes all around that this resolves itself soon. Treatment for this is intense steroids, Budesonide, and some other lofty drugs. I just want to be back home with family. Matt is doing wonderfully and the in-laws have been a HUGE help. So thank you to them!!

#jackiestrong #guerrastrong #leukemiasurvivor #GVHDsucks #messyhairdontcare

GVHD is Graft vs Host Disease; basically the new T-cells are attacking my healthy ones.

UPDATE: I'm out and resting. It wasn't the least painful ones I've had. But I made it though. Thanks for all the love and support. Going home to rest. 😘🧡

It's time for my 6 month testing. A little bit late because of dealing with GVHD, and still dealing with it. But nonetheless, waiting to be called back for my Bone Marrow Biopsy. Glad I have my momma, Jennifer Loomis , here to support me today!!

Send love and support that it goes well. They are always SO PAINFUL!! 😖. But 🤞 were still Cancer Free!!! And the cells are still grafting as they should be despite the pain and setbacks I've been experiencing. Thanks for all the love and support. I will update as soon as I can with results but it takes about 3-7 days. #jackiestrong #leukemiawarrior #leukemiasurvivor #guerrastrong #effcancer 🧡🧡🧡

This man. He's one of the good ones. Always.

Happy Father's Day my love! So proud for you to be my other half and the man that teaches our kids how to grow up into wonderful people. 😍😍💖⚾🥇🏆🏅🎖️🏈 #guerrastrong

Country Fest #1 at Clay's Park. I only went one day (@ like 5:30 pm). Wore a mask except for pictures. And they found a spot that was about 6 feet away from everyone. I was over all really happy and felt pretty safe. The people watching was SO entertaining, 🤣😂!!

It's crazy to think how things change in a year. I'm feeling all sorts of emotions with my one year diagnosis coming up next month. But I have persevered, and beat the odds more than a few times, despite the many set backs I have encountered. My team of peeps have been by my side since day one.

Country Fest #1 was awesome, and I got to experience a bit more normalcy in my roller coaster life. I can't wait for Country Fest #2 in July for my 1 year diagnosis anniversary!! I'll spend it with the gal who saved my life with her selflessness, Melissa Loomis-Diamond . Hopefully I'll be feeling even better with more of this GVHD behind me.

And maybe I'll find the perfect belt to match my beautiful Cowgirl Hat from my momma! 🤠

#jackiestrong #thankGodforgolfcarttaxis #gottafindsomeboots #stillhatewalking #leukemiasurvivor #guerrastrong #effcancer #countryfest #russelldickerson #samhunt

🚨Health Update🚨Long post warning, 😏🧡.

So, for a few months I have been dealing with a form of rejection called GVHD (Graft vs. Host Disease) of the liver and gut. Some might remember I had a form of this of the skin in January that lasted just a few short weeks. Well this one lasts A LOT longer and it's much harder to get rid of. But some form of GVHD is a good thing as it helps train the cells to do their job, so to speak. Just not this long and this aggressive. In the course of having GVHD I have lost a ton of weight. I went from 145 to 118. Another tell tale sign the GVHD was wrecking havoc on my digestive system as nothing was really being absorbed. My potassium and magnesium that we all worked so hard to get to normal levels plummeted, 🤦. The muscle deterioration from all the steroids caused me to become really weak, but I have since started to get stronger, so yay 🥳!

Recently, we started a new medication to help me, Jakafi. A type of maintenance Chemo, it was supposed to be a game changer. However my, fragile little body had a harsh reaction to it causing me, after having just been on it for a little over a week, to become Jaundice and damage my Liver.

I've been at Seidman since Tuesday. Rest assured, I feel fine. It's the bloodwork that I get done on a weekly routine basis that came back funky causing me a free (yeah right 😏) hospital staycation, 🤣😂. So, what's been done so far:

🔹Liver ultrasound showed no obstruction, only that it was slightly enlarged, likely enflamed, obviously.
🔹They held the Jakafi to see if the liver enzymes get better. Bilirubin went from an 8 to a 7.5 overnight which is promising (normal bilirubin ranges between .5-1.2 for perspective). Alkaline phospate is 2055, up from 2044 (normal is 33-110). And Ferritin is 4980 (normal 8-150). These are numbers they are watching, so 🤷.
🔹They are still managing the GVHD with steroids. The team will administer a one-time heavy dose of IV steroids to help "melt" this away?!
🔹And they are highly considering a Liver Biopsy, which will likely happen either tomorrow or after waiting a week to see if holding the Jakafi and seeing if that will help bring down the numbers.

We/the teams are NOT thinking:

🔸Liver Failure
🔸Gall Stones - it was already ruled out 🤪🤣
🔸Or doing long term increased steroids. We have tried that and it really hasn't responded too well, aside from making me moody and mean. I don't like moody and mean.

So, now you know. I apologize for not updating sooner. As the news trickles out it's understandable that people are worried and want an update. I wish I would've done it sooner, but there wasn't really much to report. I have a midline that I am trying to BEG them to leave for at least a week so get me through the appts next week. But we will see. 🤷🤞.

Thank you for being on this journey, this long epic journey, with me. I get stronger because of all those who are always SO VERY supportive. And we have officially hit the month that I was initially diagnosed with this awful Blood Cancer, Leukemia. July 23rd is fastly approaching. I can't believe it's almost been a year!! So, just thank you, from the bottom of my heart.

Also shout out to Matthew Guerra who has been an absolute rock, taking care of home and children and that comes between. During times when most couples would break we just continue to get stronger together. I am just so happy to have found him all those years ago.

#justaflingmyass #jackiestrong #guerrastrong #GVHDsucks #leukemiawarrior #bestsupportteamever

🚨Heath Update🚨

I received the Liver Biopsy today! It knocked me out for sure!! But it's a necessary evil. The results, like most biopsies take a few days. Either way after recovering from that procedure overnight, I'll be discharged in the morning some time. So just like cable, anywhere from 11-6pm 😂🤣🤷🤞.

The bilirubin levels actually went up to 8.7, but the other two levels went significantly down. And this is after we stopped the Jakafi, 🤷🤔. So we're ALL anxiously awaiting these results as to find out what in the heck is going on??!! 😩😬.

We're all still remaining hopeful. So keep those prayers, positive thoughts, mantras, candles, spiritual uplifting's, and all the things coming my way. It DOES help. I'll update when I know more.

But know that there is some exciting news on the horizon! Crystal Smith and I are starting the plans for creating a team for the Leukemia Light the Night Walk here in Cleveland on October 3rd. We just created the team, so please join us if you can. Yes there will be shirts!! The Team name is Blood Tied Leukemia Warriors. I used to attend these walks to support my friend Crystal Smith , and now we are survivors together. And we are both phlebotomists who met at Lakewood hospital while I was doing clinicals! Been friends ever since, hence blood tied, and leukemia warriors. Again we hope you'll join us or donate to the cause!!

#JackieStrong #leukemiawarrior #gvhdsucks #guerrastrong #BloodTiedLeukemiaWarriors #weregonnarockthiscity

🚨 Health Update #3🚨 And a vent session!

When it rains it pours! Looks like I'm not getting out in time for Fireworks! It's my birthday month and I always celebrate with July 4th fireworks. 😩🥺😔. I know it sounds superficial but I am feeling pretty devastated. Both Liver and Kidneys are acting up. I've never had high potassium! Ha, but here we are with potassium levels above the normal range 5.6 (normal is 3-5.2). But they've been continuously trending up all week. So now I'm not going home.

Poor Charlie already missed the Parma Parade she was supposed to walk in with Route 42 Dance! And now they don't get to see fireworks with Mommy. They'll be fine, as they are resilient kids, it just hurts.

Please continue to keep me in your prayers, thoughts and well wishes. I need it all..Give the doctors the knowledge to figure out what's wrong. I literally feel like I'm on an episode of house 🙄🤨🤔😒😥😳😬

On a total side note... Any of my colorstreet peeps have patriotic nails in stock that I can get dropped off. I'd like to feel somewhat festive if I can't watch the glorious fireworks 🤷🎉🎇🎆🧨🇺🇸

#JackieStrong #leukemiawarrior #BestSupportTeamEver #nofireworksforyou #guerrastrong

🚨🧨🎉😘🥳🇺🇸🚨 Epic Update!!

This momma made it home tonight! Miracles do happen. I have to go back on Tues for a check-up. But for tonight I'm having all the fun with my kids and hubs!!

#independenceonindependence #jackiestrong #happyfourthofjuly #leukemiawarrior

To most this picture doesn't mean much. To me, it's a stark reminder of how much life just stopped once I got my Leukemia diagnosis. I got an upgrade with my Fitbit to the Versa 2. And I was trying to calculate a good starting point for activity since getting GVHD and starting to be more active. I wanted to see what my previous average was... Well, I thought I had used my Fitbit after my diagnosis, apparently not. But I was surprised at how taken back I was when I saw this. It's true. It just stopped. Everything just stopped. And here is another true visual. I'm not really upset by it, more of an observation is all. I'm happy I can get back to being more active.

I'm not 100% just yet, and it may be awhile before being so; but I am continuing to try and live life and be more active and get my muscle mass back little by little. Eventually I'll be working out again. Baby steps. 🤣😂 We're gonna start with a Fitbit upgrade. 😏☺️😎🧘.

When I say I have the best job; I REALLY mean it!! Spent lunch with the boss man, Paul Cox , enjoying the live music of Creative Arts student Maira Vianna. You can catch this incredibly talented, Brazilian born, rock star interning at the Rock & Roll Hall of Fame in "The Garage Exhibit". Tri-C and the Creative Arts Center of Excellence helps fund this exhibit! So take some time and come see this incredible interactive exhibit at The Rock Hall where you can play a variety instruments and rock out in the way most artists did... In their garages! Here year round!!

🚨As promised here is an update. 🚨

It's officially been one year since I was diagnosed with Leukemia (AML; FLT-3TKD, M5, MLL+). I am since Cancer Free!! The road to recovery has been tumultuous at best. I have undergone chemo, radiation, infusions, cardioversions and a bone marrow transplant that nearly killed me with a cardiac arrest episode. I have had GVHD of the skin, and even the dreaded COVID19!! Which coincidently was the MOST uneventful medical related thing to happen to me.

But shortly after COVID I got GVHD of the Liver and Gut and I took a HUGE step backwards. I was back in the hospital and lost another 25 pounds I couldn't afford to lose. I became Jaundice and my liver function was shot. Slowly (like over months) the GVHD of the Gut started to work itself out, but only with A LOT of steroids; to the tune of 150mg a day at times. I am just now starting to introduce dairy back into my diet, fats and sugars are still off the table. But I can drink a glass of milk and put creamer in coffee. While this is great news that helps me gain a little bit of the weight I lost, it will take even longer for me to recover from the damage on my muscles the steroids have and are still doing.

The liver biopsy I did a couple weeks ago came back with good news overall. The results showed definite GVHD, so it was not related to the new chemo drugs I was on, and it was not some form of new Cancer I was freaking out about having, or even a new liver disease and failure. This was all good. What is DID show, was that I am steroid resistant to this form of aggressive GVHD of the liver. Which would explain why my bilirubin was at a 17.6 when the normal range was 0-1.2. When I say my eyes were wicked yellow, it was like staring at the sun. And they still are.

But this qualified me to participate in a trial study for a new drug that helps treat steroid resistant GVHD patients. I was apprehensive at first because I am already a unicorn, griffin, phoenix hybrid (medically speaking, of course 😏😉). So who wants to throw a test drug in the mix. But, fact of the matter is that it had to happen. I need this to get better. So for the last two weeks I have been prepping to start this trial drug. And of course, it started today. On my one-year anniversary of being diagnosed.

I did NOT think I would find myself here on THIS particular day. In fact, I wanted to be far away. Like at Country Fest 2 at Clay's Park with my Mom, Sister, Hubs and Brother-In-Law. But instead I am here. Well played PTSD, well played. It's ok though. I am looking to the future. I am marking today as a good day because I received the first installment of a new drug that, hopefully, will help me. I am amazed at the research that is being done to continue to save lives like mine and many others around the world. And I am SO HAPPY that I get a chance to pioneer in a another medical field as I have done in both Cardiac and OB/GYN Maternity fields. Paving the way for many others to get services and treatments they need for their health and wellness. It makes me so proud.

I am happy to be here. I am happy I have the best support system in the multi-verse. No JOKE. Thank you for being here along with me this last year. Let's make next year and even better one filled with crushed milestones and happy, EPIC memories. I love you all so much, thank you for being here with me, always.

Continue to be #JackieStrong!! 😘🥳🧡🩸

Teaser Photo!! I finally made it to CF2 with the hubs!! This weekend of treatments isn't getting in my way of having a great time with my special peeps. #JackieStrong #nofilterneeded #GuerraStrong

I love you so much Matthew Guerra !! Next week we celebrate 15 years together! 😘🤪🥳

I want to talk about the kindness of strangers and random acts of kindness. 💜💖🧡💗

I was at Quentin's last baseball game with the family. Even went and got Kaitlyn, my niece. I am not afraid to sport my PICC. I am not afraid to be open about my journey or answer children's questions about the device that dangles from my arm. I am humbled by their curiosity and eagerness to learn. I had spent a majority of the game updating other team players families, now dear friends of mine, about my progress and health while still cheering on our team.

Today, a woman walked up to me and handed me an unmarked card and said she was walking her dog when someone asked her to deliver this to me, anonymously. I was perplexed. I knew my birthday was coming up on Friday, but did anyone else?? I don't remember sharing that with anyone. So what could this possibly be?

When I say I bawled my eyes out!! I couldn't help it. Not only could these people not know that my birthday is on Friday, or that Matt and I's 15 year anniversary is tomorrow, but they also will never get to know how unbelievably grateful I was. I'll never get to tell them thank you! But I am SO VERY THANKFUL!

I appreciate this more than they'll know. It made my whole week this far. It's the simplest acts that can change a person's week, day or even hour. So just thank you! #JackieStrong

Can't believe it's been a year! While I am still going through things I am healthier, stronger and still Cancer free! ... And what's even better is the trial drug is working!! All my counts are down! 🙏🥳. To quote my husband... Way better birthday gift than last year! 🤣😂🤪!! #JackieStrong #imgonnarock37

Thanks for all the prayers and positive thoughts. My bilirubin continues to trend downward, now at 4.1!! #JackieStrong #effcancer

Parma Night at Byers Field this evening! Dom got to run out like the Varsity FB team and Charlotte got to cheer along side the Parma HS Cheerleaders. They had a great night. And I am an official Seminoles Cheer Coach! 🧡🧡🧡 I'll do you proud Seminoles!! #GoSeminoles #Orangeandblack

THIRD PLACE 🥉🏆! GO SEMINOLES!! 🧡🧡🧡I'm so so very proud of all the girls today! They worked so hard for this and it paid off!! This was our first year participating in the Seminoles league in general, and it was the franchises first time at cheer competition! They were rock stars today!! 😭🥳🥰 I'm so proud!!

Congratulations Seminoles Cheerleaders!! Now let's clinch first 🥇🏆 in November 😏🤩🤗💪!

In the craziness of the weekend I forgot to post about the coffee festival. It was great. Definitely a coffee purist type of event. No sugar offered, just whole milk and half & half, so it really forced you to taste the actual coffee. I am a medium to dark roasted type gal. If your interested. Lol. Also I like the Costa Rican, Honduran and Columbian coffee beans. I think in that order. Didn't really care for Ethiopian, unless it's brewed JUST perfect: medium to light.

I loved spending time with my survivor sister, Crystal Smith, and my sister in law, Daniele. ☕🫖🍩. Thanks for the chillaxin' day! We all needed it. ☺️😘💖.

Shout out to Made You Look Coaster Company ! Got this amazing handmade coaster. #GhostbustersOG

Better week than last week for sure!! Making the most out of lunch too! PICC line dressing change, Art Therapy time with my good friend Barb! And prepping for the next Silk Hoop Mandala. Getting more intricate. ☺️☀️🌳🌈#JackieStrong #gvhdsucks #arttherapy #leukemiasurvivor #mynurserocks

Clays trick or treating! #trickortreat #sandersonsisters #JackieStrong #thefamilythatdressesuptogether

I'm headed into Rainbow Babies & Children's for a cardio check up. But I saw that I reached my $1,000.00 raised goal! And we knocked the team goal out of the park! I can't say thank you enough to all those who donated and supported me, Crystal and our team! My 1 year STEM cell transplant is just under two weeks away and I am so thankful to be surrounded by such loving and caring people!

#blessed #JackieStrong #leukemiawarrior #leukemiasurvivor #effcancer #bloodtiedleukemiasisters

Evolution of Cancer Hair Growth! I'm glad it's growing back. Haha, and I'm thankful for bathroom selfies 😂👍. I've done it all I feel like. Head wraps, hats, scarves, to wigs, to just going super short and sporting a mohawk! Now I get to explore headbands. Best pic is saved for last 😘. 😍🥳 Ok, well their a little out of order but you get my point. Lol!

#JackieStrong #LeukemiaSurvivor #ChronicGVHD #StemCellTransplant #cancerhair #regrowthhair

Happy 1st Transplantaversary! A year ago today my sister, Melissa Loomis-Diamond, donated her precious Stem Cells to save my life! The first two photos are from that moment and I cherish them. It was such an exciting but nerve wrecking day because we weren't sure how my heart was going to handle it. I am so happy I was able to have a sibling (two at that!) That were half matches so that I could get this done so quickly. Some never get to see transplant. I am forever grateful! 🥳🥳🥳

Well, the next several photos are from my "death day" (taken from Happy Death Day, great movie, funny, and I have a morbid sense of humor. Lol). I relive this day a lot. A lot. More than I care to admit, but it is what it is. I remember the whole day vividly. The nurse doing CPR, the team pushing meds. The lights and sounds and feels from that day are forever burned in my memory. And, without what I feel HAS to be divine intervention, I wouldn't be here. If the team hadn't rounded differently that day; I wouldn't be here. If the nurse who used to work in the ER, but now works on the transplant floor, and was on the code team hadn't been in that hallway, at that time; I wouldn't be here today. If the Dr hadn't walked in at the very moment I needed them the most; I wouldn't be here today.

When you feel like you need a sign of divine intervention. The universe definitely responds. I was out for just a few minutes. And while there were no grand lights or feelings of being on the "other side" I know something or someone (or in my case people) pull me here. I know without a doubt I am meant to be here. I am here for a purpose. I will use my voice and actions to inspire others to live to the fullest.

So, today is my 1 Year Transplantaversary (thanks RN Chad). Tomorrow is my Lifaversary (thanks Terrii )!. 😘 And thank you to everyone who has been on this crazy ride with me. It isn't over. But I am happy I am riding this bus with the jolliest bunch of a$$ holes this side of the nuthouse, 😉😘😘!

#JackieStrong #AMLsurvivor #Leukemiawarrior #transplantaversary #stemcelltransplant #sistersister

EDIT: Thank you for all the love and well wishes! Now, we wait! It takes approximately 7-10 days to get the results. My next appt is in two weeks with Dr. T. #fingerscrossed

How's your lunch break going? 🤣😂

1 Year Bone Marrow Biopsy time. Wish me luck! #JackieStrong #AMLsurvivor #remission #fingerscrossed

There is SO much to be thankful for this year; it's overwhelming to think about actually.

Big news though. Bone Marrow Biopsy results came back: NO LEUKEMIA OR ABNORMAL CELLS DETECTED!! STILL ON REMISSION!!!

I couldn't be happier.

I just wanted to say thank you to everyone who has been on this journey with me. I truly believe I have the best support that anyone could ask for; both friends, family, and acquaintances. You guys have been my army, my saviors. There are not enough words to express how truly grateful I am for all of you.

So happy to be home with my family this year. 🥰😍🎉🥳 Got to see my Dad, sister and her family but didn't take pics. Oh well those will come tomorrow. Lol.

Wow! First of all what a great accomplishment for being one-year post Stem Cell Transplant. But this also never would've happened pre-Cancer. I blamed a lot of my health and inabilities due to having a rather extensive heart condition. But today just helps prove that I am getting stronger every day. Getting healthier. Focusing on my TOTAL health has been so important in order to keep me in greater shape. Shape enough to tackle all that comes with transplant, with CHD, with being me.

Here's to new, greater heights reached and goals crushed! 🥰🙌

Must mean I'm the wedding photographer, 📷💒🥰. Let's get this party started!! #mrandmrsdowdell 2.0 💙💙💙

Vegas Baby!

Hoover Dam!! Yeah baby! What a great thing to see.

Home and back at it. I was starting to get appointment/treatment fatigue. Two appts a week while working, designing and getting the kids to their respective practices was tough. But I can honestly say it's been worth it. Vegas helped me confirm that I am healthier now than I have ever been. Taking better care of my health and well being has been quite the journey. I suppose I never knew how badly I was taking care of myself until I had this trauma happen. But after walking over 40 miles while in Vegas (#allthesights) and seeing the Hoover Dam, I realized Iam more fit than ever and doing better than I give myself credit for. I am seriously looking forward to many more years of grabbing life by the horns. #JackieStrong #AMLSurvivor #LeukemiaWarrior

Also a special shout out to my mom for this amazing Pandora bracelet for my one-year post bone marrow transplant anniversary! I am so in love. And it matches the ring upgrade Matt got me for Vegas. I am so spoiled. 😭☺️🥰 Thank you!! They are beautiful!

MGK! Let's go! 🥳🙌

🚨Just when I was getting rid of GVHD, I find myself waiting for a Heart Surgery🚨Long post alert, sorry.

Yes, GVHD is FINALLY on its way out, 🥳. Bilirubin has leveled out and my liver enzymes are back down!! WOOT WOOT! However, the celebration is seemingly short-lived. Yes, I am now at UH Main Campus, awaiting a full hardware update on my pacemaker and wires, 🤦‍♀️. If it's not one major Titan (I joke that I have three Titans that battle each other: Cardiology, Electrophysiology, and Oncology) throwing a tantrum, it's another. Perhaps EP was jealous that Oncology was getting all the attention lately. (Sigh).

On Thursday I had an event of Ventricular Tachycardia. About 9 beats in under three seconds equalling about 194 bpm. I immediately knew something was wrong about this particular event, so I sent a pacer transmission. I know my arrhythmias fairly well, and this felt atypical. I know I am forced paced because of my atriums being in Atrial Fibrillation (at about 500+ bpm), but I've never had ventricular arrhythmias, and they are NO JOKE!

I went to work the next day, because why not, I felt fine. I finally received a call from my EP (Electrophysiologist, ehr pacemaker doc) later in the workday, like 3:30pm. She said I haven't had this type of arrhythmia before and recommended I come in to be admitted. It's likely that I would need to have my pacemaker upgraded to a pacemaker/ICD/CRT. If I would go into another dangerous rhythm my pacemaker is not equipped to help me, 😱. It strictly paces. I reached out to my previous-ish team at Akron Children's. My EP there said that if he would have seen me spit out ventricular tachycardia he would have upgraded my pacemaker to an ICD. So I heeded their advice and headed to the hospital after packing a bag (or three, cuz you all know me) and said goodbye to the kids and hubs. 😔💔

So, I have been here for the weekend in hopes it would be a quick stay. That does NOT seem to be the case. Not only do I need a device change, but I also found out the wires I have are not compatible with an ICD/CRT. Therefore, I need a lead transplant. I have two wires now. One would stay in the atriums, one would be removed and replaced. And a third wire will be added to the systemic right ventricle (your normal left ventricle). So, what I thought would be an easy stay, is actually a really complicated surgery. 🥺😭

The last double lead transplant I had was just after Quentin was born in 2009. It was guestimated to be a 6-hour surgery and it turned out to be just under 9. There are still pieces of the previous wires that they couldn't extract in my shoulder; those were 17 years old. These are only 12-ish. So not as old, but likely still embedded into the muscle. In normal circumstances, these surgeries are just a couple of hours. They are guestimating this one to be about 4 hours. We all know I am not a normal case though.

I have several teams who will be in on the surgery, which is currently set for Friday morning unless they can get me in sooner. 🤔 I don't want to rush them because I want to make sure they are well-prepared, but I also don't like just sitting here, feeling perfectly fine, as a precaution against something that might happen. I know I need to be here. I know it's MUCH safer this way. It just sucks. 😒

I need prayers, well wishes, and ALL the good juju. I pray for the doctors to have the knowledge to approach, execute, and master this surgery with the steadiest of hands. Even with a 98% success rate (again, on normal hearts), I still find myself extremely nervous and hopeful, but nonetheless anxious. After the CT with contrast, the EP team was hopeful the vein they needed to have access to for the new CRT wire, was right where they wanted/needed it to be. This is a good sign. 🥳

I pray and wish the surgery is done as smoothly and expertly as possible, and the recovery is flawless and uneventful. I am sorry if I haven't had the chance to update everyone before making it official on Facebook. It's been a hectic weekend. And a day full of tests. I will be here all week:

(ADDRESS REDACTED)

If the surgery is sooner or anything changes, I will let you all know. But, for now, it's Friday morning. I am remaining hopeful. I have plenty to keep me busy. Perhaps I'll binge-watch some shows this week at night. Suggest your favorite. I like Sci-Fi. 😍

#JackieStrong #chdwarrior

🚨UPDATE🚨 The surgery has NOT happened yet.

I have been told all week the surgery could only take place on Fridays for lead extractions due to the scheduling of the hybrid OR. I got the news early in the week of it potentially being Thursday afternoon. Then they said it would definitely happen on Friday. This was changed yesterday when the teams started saying stuff like, due to scheduling there is a slight chance the surgery could be postponed till Monday.

So, now after having been NPO since midnight, COVID swabbed and tested (negative), type and screen completed, and pre-med order is in and set to on-call, I find out that there are scheduling issues beyond their control (not enough staffing for the OR - nurses, techs, etc...) and there is a strong possibility the surgery will be on Monday.

My question becomes: What's to say they don't decide to keep me another week because "they only do lead extractions on Fridays"? I am really trying to remain positive. Truly. It's hard right now. The other two surgeries scheduled for today were more dire than my case. So, while I am eager to get this surgery done and over with, I am happy I am not at that level... YET.

The team was nice enough to come by late yesterday to show me what the device I am getting looks like. It's an Abbott (formerly St. Jude) Gallant HF. It's much bigger than my current one, so it will definitely be an adjustment. As long as I am safe though, that's all I care about! Also, this will be device #10!! I can't believe this will be my tenth device!

Looks like I will be here through the weekend. On the positive side, I will have some time to read or binge-watch all those recommended shows, now that the production I am designing (Chery Docs, None Too Fragile - Akron, OH) is opening tonight, and it's the weekend, so no virtual work!

I have had a great time lately visiting with friends, and family. I was allowed to see my kids and husband, in the lobby yesterday. That was a nice, also short, visit.

#JackieStrong #chdwarrior

So, tonight's the Ladies Prom-Redo 💃 that I was SO LOOKING FORWARD TO! It's what prompted my Prom Dress Search 👗 post some time ago.

Well, since I am in the hospital... STILL waiting for surgery (now postponed for Monday), I unfortunately will miss out on the Annual Ladies Shenanigans party, complete with Limo 😕🥺😔. So, I've decided to move forward with at least getting dressed up tonight! 😂🥰. Matt, being the wonderful and supportive husband he is, brought me my Prom Dress (from LuLu's)! I am making a hospital mocktail (OJ, Ginger Ale, Blueberries and Strawberries). And I am grabbing life by the horns and saying EF it. Can't wait to virtually see my girls!!

#JackieStrong #20YearReunion #PromRedo #chdwarrior #LeukemiaSurvivor #ToughLikeDiamonds #SkinofaRhino #letsgetfancy

Pic of nails for attention. They sort of match my dress. 🥰💞💅

OK. I'm headed back shortly. I love you guys! Matt will post updates as available.

Thank you so much for the love and support this past week and always!

Ok. Please just say a prayer for me and the doctors and everyone!! I'm finally well enough to do the surgery so fingers crossed that it's today listen I'll be well on my way to getting out of the hospital or at least getting scheduled for dialysis to be well enough for the amputation. It's a very long story! But I remain very hopeful this is the first time I have been able to hold my phone? And peace, and love to all!