We continue this month with another true story in a series about those who have suffered from severe illnesses and a God Who Sees, Heals, Provides, Shepherds, and Whose Presence never leaves His children. This is an amazing story about a young girl who has for the past year been fighting a rare and adult form of cancer that has ravaged her body. The battle is not over, though there has been tremendous progress. Her illness was first brought to my attention by her mother, Jayme, who has blogged from the first accurate diagnosis in July 2023 on a Facebook page titled Finding Serenity. Jayme’s courageous, transparent writing is a beautifully illustrated picture of what happens in a mother’s heart when her children’s lives are threatened. Her incredible story has gripped my heart as it has for many other readers, and has kept all of us encouraging, supporting, and praying for this family through the long months since. With Jayme's permission, I am delighted to share with you excerpts of her blogs from the first to the most recent, beginning today with part one of three. If you would like to send a word of encouragement to Jayme, please message me at the end of the blog and I will pass it on to her.

Facebook Post July 28, 2023—Finding Serenity Page

I created this page to post updates about Ro (my daughter, Cairo, 14 years old) and to release my thoughts, fears, emotions, and daily happenings in this nightmare of a life that we presently exist in. It will get personal. I have never been good with speaking my thoughts effectively, but I am good with writing them. I won’t apologize if it’s too much for you. Just don’t read it. Trust me, reading it is nothing compared to living it.

Looking back on everything I’d say her symptoms began last summer. She was just tired all the time. She never felt really well, but there was nothing major to pinpoint. Then she started mentioning that she was having trouble swallowing. It was barely noticeable initially, and we thought she was just taking too big of bites of food. She got colds more frequently once school started, and we assumed it was because they didn’t require masks anymore and she was just getting more germs from kids. 

Then in January or February she started throwing up when she ate. She said it felt like food was getting stuck in her throat. We made a doctor’s appointment and I requested every blood test done I could think of. Results came back that she was anemic and needed iron, but that didn’t explain the throat issue. We scheduled a barium and X-ray test. They noticed food was moving slowly down her throat but no one suggested more tests, and they kind of just passed it off as nothing. So I called around to find a pediatric ENT (ear, nose, and throat doctor). We had our first appointment and he figured it was inflammation from food allergies and scheduled a scope. All of this took us four months from point A to the scope. All this time my daughter was suffering. Vomiting. Struggling. She lost 30 pounds. She kept living as best she could and was afraid to say she didn’t feel well.

July 12 was when we felt the absolute worst of any day of our lives. An upper GI endoscopy was scheduled. What was supposed to last 30 minutes turned into 90. Then when our surgeon came out to speak to us, she called us into a private room. She was visibly shaken. With each word she spoke our hearts shattered. This was not happening. How could this happen? The tears wouldn’t stop. Cancer. 

We watched our baby get wheeled into the PICU. We were told they saw necrosis (dead tissue cells caused by disease or inadequate blood supply), inflammation, lesions, and a mass. She needed a blood transfusion right away and also started IV fluids: Octreotide, Protonix, and Tylenol. They did a CT scan and came back with results of hits in the liver and lungs as well as the stomach. The next nine days were spent in the hospital doing blood tests day after day, waiting on biopsy results, getting two more blood transfusions, having a pet scan and a central line surgically inserted for chemo. These nine days were filled with tears, prayers, shock, and every day there seemed to be more bad news. There is so much in between but I’m going to jump to present.

July 26 was the start of our first session. We are calling it round one of our fight. And it’s nothing short of kicking our ass. First drug ran 30 minutes, second two ran 30 minutes, then they started the big gun. The 5FU that runs for 46 hours. With the very first drip my soul was crushed. Watching my baby look directly into my eyes while she holds my hand and begin to cry was almost too much for me. I cried too. She has not eaten in three days. She has continuously vomited and is achy and has tightness in her chest. Her blood levels have dropped since starting chemo and we are looking at another transfusion today. I have so many emotions. 

I’m so overwhelmed with gratitude and thankfulness for all of you who are supporting us. It’s never ending. The love we feel. The people that are in our lives. God! He has brought so many people into our lives that we need. I’m exhausted. Hospital life is not made for anyone. Ro doesn’t want me to leave her, so I’m in this room by her side caring for her every second. I’m angry. I’m so angry at cancer. At this disease. At what it’s taking from us. . . .

We had Mandy, the massage therapist, come in and she did pressure points for nausea and just sat with us and massaged Ro’s feet and talked to her. Ro is now sleeping. We have so many amazing nurses and people that work here. Mandy is just one of the many amazing souls. We also love Stephanie, the life coach, who stops in daily to talk to Ro. The doctors decided we can’t go home today when the chemo is done. We are on the final countdown for this drip. It’s done at 6 pm. But her red blood cell count has gone down to 8.3 so we do need a blood transfusion that they want to give her tomorrow morning. Then we wait and see how she does but they are hopeful we can make it home tomorrow.

Chemo has made her very cold already. Very tired. Her body aches and she has no interest in doing anything. She doesn’t even want the volume on the TV. We sit in this quiet room. We hold her and love her and just keep letting her know we are right here with her. We won’t ever leave. We will fight this together. We will fight this with all of you. . . .

One hour left of watching this poison drip. She started throwing up blood clots—many of them, and it scared the hell out of us. One hour left. They gave her some Ativan to calm her and are making her rest sitting upright. They feel it’s irritation from all of the stomach acid and no food in her stomach. They don’t feel at this point it’s cause to worry. She held my hand and started to cry and we just told her and tell her it’s going to be okay. It’s nothing to worry about. One more hour. . . .

Well we finished the 5FU. She did it. Her first battle. But the doctors came in and are adding another chemo to the regimen, and we do it tomorrow morning. It will run only 90 minutes. It’s like a punch in the stomach. This made me break down in front of her and I’ve been trying so hard to not do that. She broke down. And I need to stay strong especially in front of her. More vomiting is still happening along with blood clots. We are keeping her sitting upright and now giving Benadryl to make her sleep. The blood transfusion is on order and will be given tonight. We may make it home tomorrow, but we have to see how she does. 

The new medicine is for breast and stomach cancer and can cause fevers, chills, and heart damage. They will monitor during the entire treatment. She’s resting and I’m back to staring out this window. This is her treatment plan: 

Nivolumab immunotherapy drug that runs 30 minutes

Leucovorin and oxaliplatin (folfox) run together for 30 minutes

Fluorouracil (5FU) runs 46 hours 

Trastuzumab runs 90 minutes 

We were given a journey binder with the treatments, doctors’ names, their phone numbers, side effects, what’s an emergency, emergency cards for the ER you take your child to, prescriptions for home. All the information you may need. It’s so overwhelming. All of this information and so many people to help, and yet I’m still sitting here holding back tears, staring out a window, while my baby lies in a hospital bed. All the thoughts wondering whether we are doing the right thing. We don’t have any other options. And I can’t lose her. I have to put her through this. Asking for you to pray that she stops vomiting. That she gets some fight in her. Pray that this new drug has no side effects. Pray she wakes up and feels like she has more energy tomorrow. Pray for my heart because it is so broken. . . .

July 29

. . .They began the new chemo this morning at 11:30. Fifty-four minutes in, she began having severe rigors as a side effect and they had to pause the drip and rush doctors in. They proceeded to give her Tylenol, Benadryl, and Decadron (a steroid) by IV. They put her on oxygen and we all just watched the monitor and waited. About 20-30 minutes later her body relaxed and they began the treatment again. She spiked a high temperature during the last 24 minutes, but once it was completed her temperature has started to go back down. She is resting now. This was very frightening to watch and all I could do was hold her hand. One of the resident doctors asked if we were religious and he prayed with us over our daughter. We are hopeful the Decadron will cause her nausea to subside and we can get her to eat and drink. Until then we won’t be able to bring her home.

Sitting here staring out this window again. So much on my mind. I wanted to tell everyone thank you again. We see so much love and kindness and caring in this place. There is so much love being sent our way. Words, prayers, gifts. I have never been much for sharing my emotions or being a hugger. I’m quite certain this has already changed me. I want to hug everyone. I’m the worst hugger just to warn you all. The tears just spill out of me now too. 

We had an Amish family near us when Ro was in the PICU. I went to break down and be alone and there was nowhere to go. I was crying so hard in front of them. When I looked up, I apologized because I just couldn’t stop, and they asked me why I was there. They told me why they were there, and even in their darkest and saddest time they prayed for us. They spread the word of our family to their own and they all prayed for us. They had about 60 in this hospital watching a baby slowly pass away and they still prayed for us. . . .

Need to post some GOOD news finally!! We are doing well! She is alert and watching Hotel Transylvania WITH the volume on! She tried a few sips of her protein shake and has had some Gatorade. She is talking again and has not vomited since 2pm!! Your prayers are working, and we feel like we can breathe again. That Decadron was a miracle! Praise the Lord! . . .

July 30

. . .My body and brain feel like they did when she was a baby. That complete exhaustion. She was never a good eater or sleeper, and for the first few weeks of breast feeding she was up every twenty minutes. I never felt like she was getting enough, yet her weight increased from 6.17 pounds at birth to 13 pounds the day we brought her home. The doctors joked that I was giving her buttermilk. She was the most perfect, beautiful baby when she was born. She looked like a porcelain doll with these amazing little rose bud lips. She was a blessing. 

I have a blood disorder called thrombophilia, a DNA disorder. It means my blood will clot too easily, and typically causes women to lose their babies during pregnancy or possibly their organs shutting down trying to carry them. I won’t say my pregnancy was easy. It wasn’t. It was a lot of tests. A lot of times they asked me if I wanted to abort. It got to the point I was just so stressed, that I finally told them no more. I won’t ever abort and stop asking. No more testing because this is the baby God chose for me, no matter how she comes out. And I had not one issue with my body or hers throughout. 

She was born on my mother’s birthday, April 21. I had lost my mother to cancer years before, so it seemed like such a blessing at the time. Now I’m having trouble with that and am a little angry with my mother. After she was born, my uterus never went back to normal size and I wouldn’t stop bleeding. For weeks this went on, and we were told I would never be able to sustain another pregnancy and needed an ablation and tubal. But we had our perfect miracle baby and we were happy and content with what we were given. And we enjoyed every moment. I’ve never loved anything in my life so fiercely as I love this child. . . .

July 31

. . .We have to have an ultrasound of her left leg today because it has decided to balloon up. They need to see if she now has a blood clot somewhere. But she joked about it, and gave the doctor a smile which he hadn’t seen yet. She barely speaks here, so her getting some of her personality back is a good sign. I won’t share our jokes because she is like me, and most people would think they are inappropriate. We like our weird and disgusting sense of humor. She likes to make her dad uncomfortable with some of the things she says about her nether regions. And I just love this about her.

The ultrasound showed a clot in her right leg and multiple clots in her left leg. We are placing her on a heparin drip now and monitor every 4 hours to make sure it doesn’t cause any bleeds anywhere in her system. This poor child is feeling defeated at this point. We just can’t catch a break, and need all the prayers and positive vibes sent our way. She just wants to go home. . . .

August 1

. . .We got some news that was upsetting to Ro. The punches just keep coming. We were told before that chemo will most likely make her infertile. We can deal with that. She needs to be placed on a cycle suppressant and it will be a shot she will need every three months. This is because we don’t want her bleeding. Then we need to give her a shot daily of an anticoagulant if we want to go home. So hearing she needs more needle pokes just about destroyed her today. I called in reinforcements for her mental state. Then to top the day off we had to change out her port and place a new needle in that. The first one worked for about one flush and just stopped. So they had to redo it again. So two major pokes. This process took three hours. 

This poor kid has had to grow up so fast. She has to talk about every part of her body multiple times a day with strangers. She has to make decisions no kid wants or should have to make. We involve her in every detail and the medical team speaks to her and wants to hear her voice on the matter. We have been praised over and over again for not only our parenting, but for our sweet daughter. 

But today if this central line didn’t start working properly on the second pull, I would have packed up and brought her home. We all got nervous on the second one not wanting to flush well and pull blood. Then it started working. I swear my heart stopped for a moment. Ro was staring me in the eyes and squeezing my hand while they were poking and prodding, and she had so much fear. I can’t tell her anymore that it’s going to be okay. I just tell her she’s doing great. I’m so proud of her and love her so much. She’s resting now. Her leg isn’t in as much pain, and her nerves are settling after a bath. Pray we have a boring night and boring day tomorrow. . . .

August 3

We get to go home today!!!! . . . We had a bunch of therapy visits today to prepare us to go home. Learning different coping mechanisms is just the beginning. They briefly touched on how all of us will have PTSD after all of this is over. The trauma we have already endured and what is yet to come. I am so happy to have a brief few days of home, but I’m also apprehensive. That worry, that what if? I have a phone number to call with any questions or concerns, but knowing we are an hour away if something does arise has me in knots. But one step at a time. One day at a time.

We arrived home about 6 pm. There were so many cards and gifts, it took us over an hour to go through them all. The support and outpouring of love continues, and we can never ever repay all of you or express the adulation we have felt. Ro was very emotional when she was finally able to hug her kitty Moonie and lay in her own bed in her room. She wasn’t too thrilled to see Trooper and Sarge (our dogs) but I certainly was! 

I wish we could thank each and every one of you personally, and show you how grateful we are. It’s amazing to me to see so many people praying for us. People we have never met. Trusting in the Lord and spreading the word and praying for my baby to be healed. That in itself is beyond anything I could ever hope for. We have five days before we are scheduled to return for our next treatment. I ask for you to pray for mental strength in Ro. For her to have these days at home and feel some peace. And I want you to know that we pray for all of you as well. God sees you. . . .

August 6

. . .I was doing some reflecting this morning. My mind is not graceful. I have ADD so it’s like all of the Christmas lights that you pull from the box in the attic all wound up and knotted, even though you know you took your time gently and carefully putting them away. That’s the easiest way I can give you a descriptive picture of my thought process. One thought was how absolutely stunning the sky and clouds are this morning. Then I thought of God and how I feel closer to Him in these moments. Seeing the beauty He created. I’ve been so thankful for Him and to Him. 

Ro said to me yesterday that she doesn’t remember the pain. Already within just a few days she has been able to push that into a box in the attic. She is afraid, with good reason, to go back and start again on Wednesday. These few days at home have healed her and made her stronger mentally and physically. She is up moving around more but not ready to try and walk around the yard. . . .I don’t want her life to change and be defined by this. I want her to own it and grow strong from it, but still find herself after. I know she won’t be the same. None of us will. But I don’t want to only talk about cancer. We need those breaks where we talk about anything else. To laugh and pretend like everything is normal. . . .

August 10

. . .Being a mother watching your child do anything is so emotional. I remember watching her jump off the diving board for the very first time when she was two. Waiting for her little head to pop up out of the water. The fear and anxiety in her eyes, but then doing it again and again anyway. I remember the first time she got in and drove her go-cart. She was eight and we balled up towels to put behind her so she could reach the peddles. She went in all by herself and started slow and then just floored it. We had to trust that she would learn and be careful. By the end of the very first day, her dad cranked that thing up as fast as it would go and she drove around hooting and hollering. Then I remember the first time I watched her learn volleyball skills at the YMCA. 

With all of these things, no matter what she was doing, she made sure to find my eyes in the crowd first. She always needed me to be watching her. I was a reassurance to her. I’m still here watching her now. I’ll never ever look away from my child. I will focus my eyes, my heart, and my soul all on this beautiful child. 

. . .to be continued