Continuing with Part Two of three blogs which are excerpts from Facebook posts from Finding Serenity. These posts are written by Jayme, the mother of then 14-year-old Cairo (Ro), who about one year ago received a diagnosis that she had a rare, advanced, adult cancer with tumors in her stomach, esophagus, liver, and lungs. One year later she is still very much alive, (that by itself is amazing) and being treated; Jayme is still posting updates on Ro’s condition and transparently revealing her own heart.

I decided to share these posts with you because I know that this family believes in God and the power of prayer and desires to have as many people as possible praying for them. Already Ro’s condition is known to hundreds throughout the world, and I wanted to help get a few hundred more involved.

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.

This blog picks up with Ro in the hospital after receiving Round Two of her very involved chemo treatment.

August 11, 2023

Cairo slept well last night. She had lots of crazy dreams and talked out loud in her sleep. She would wake herself up talking too, and almost punched the nurse in the middle of the night when she was waking Ro up to take meds. Chemo dreams are crazy. 

Ro had really bad night terrors when she was little. She would yell and scream and hit and her eyes would be open the entire time. The doctors told us she would outgrow them and to never wake her up. We just had to talk to her calmly and try to incorporate our voice into her dream and turn it into something safe and fun. I used to talk to her about the ocean waves since she loved the beach and about Bugs Bunny cartoons or our dogs at the time, Macey and Ripley. She ended up moving on from night terrors about the age of seven. 

That’s when they really started slowing down but she has always been a sleep talker. Full sentences. Usually something that had happened during the day. One night she yelled out, “That’s my sandwich!” Earlier in the day Ripley had tried to eat her lunch. 

August 12

We were able to leave the hospital last evening. Being home is Peace. Ro has been doing well. Her body aches, and her skin is sensitive to touch, and she has nausea and diarrhea. All typical chemo side effects. . . . She asked to be left alone today and wanted to go to her room so I let her. . . . She loves playing the guitar but the chemo has messed with her brain and dexterity a little. She is frustrated because she can’t get her fingers to work and can’t get her brain to allow her to easily play. On one of her drawing pads she is using she wrote on the back ”some of the stuff I drew while having cancer.”

August 14

We took Ro on the boat to cruise a little and relax. We wanted her to get some fresh air. She has been having liver pain, and her body aches along with the nausea. She says she can’t remember the last time she felt good. She wants to feel good and wants things to be back to normal. . . . 

I’m back to anger. Angry at the months that it took to get the correct diagnosis. . . .The “what if” to have found this sooner. Before it metastasized so significantly. Why do we have to push to have certain testing done? Isn’t that what the healthcare system is schooled for? I’m not trying to place blame. There is no one to blame. No way to go back. We are here.

 

And “here” is having our insurance tell us the doctors are wrong, and not approve two of her treatments twice now. Denied. And it’s because her cancer isn’t a child cancer. So why treat a kid under 18? We are pursuing other avenues and we will get it covered one way or another, but it’s the fact that they have so much control. This is my daughter’s life. . . .

Every night my husband prays with her, tells her a story, and asks what she is thankful for that day. That I love more than anything. To have some positive thoughts before closing your eyes to sleep. Yesterday she said she was thankful for Lunchables. My husband is a good man. He’s good with talking and telling stories and reevaluating situations and focusing on the positives. I’ve always been the negative one. We balance each other out.

August 17

. . .She wants so badly for things to be normal and to start school. We are going to have to go the virtual route since she has treatments so often and we don’t want her to be catching all the germs. . . . 

August 18

So we are still being denied on the main chemo that we want the most. The one that attacks her protein in the cells to kill it off. They called me with an estimate today for just this one drug, and at only 260 mg the estimate is $1,118,000. So refinancing our home won’t be an option. I want to laugh at this number. She has five chemos to take. Thankfully three are covered and one is being given by the manufacturer. So pray we can get approval from another manufacturer. So far one denied us based on income. Seriously.

[Editor’s note: Notice, this is from the same day—the former paragraph being written earlier and the next added a bit later in the day.] I need to share something special. I was sitting out back noticing the breeze blowing the leaves on the trees. I smiled and felt calm and peace and thanked the Lord for the feeling and the sight before me. Then we got a call that her chemotherapy is covered!!! The appeal went through and the pharmacy reached out to let us know!! All five are now covered!! What a blessing for our baby girl! So many things to be thankful for lately. It is just amazing.

August 21

. . . .We stayed busy the last few days because Ro was feeling well. We saw friends and watched a volleyball game. We went swimming and to an amusement park. Her body was tired but her mind wanted to continue, and that’s what she did. When we were at the amusement park, I was remembering how an amusement park I went to as a kid looks now. The parking area is covered in grass and completely grown over. 

 

I was watching my daughter sit with her friend and could see her chatting away and smiling. Not one thought in her head about cancer. She was living in the moment. I was thinking about when this is over. When she is healed, how will she live? Will she be traumatized and live in fear that her uninvited guest will return? Or will she do the opposite, and think she has already lived through the worst scenario, and not heed caution, and push life’s limits?

Or, will she just be her strong self that she is now, and find a way to grow and prosper and live the absolute most beautiful life? Will she love with all of her being even though love can cause suffering? Then that parking lot came to mind again. The overgrown grass. It found a way to live even after decades of being in darkness. I pray I see her live the life she dreams of. She wants to renovate a van and drive across country to visit family. She wants to attend a school for cosmetology and has thoughts of working in every state she travels to. And, of course, own a bunch of cats.

August 23

Round three of our fight begins in a few moments. She is nervous but seems ready. She is all cozy in her hospital bed with a nice warm blanket. Since we have so many who care and pray for us, I’d like you to add to your prayers, as we have, the following children.

Pray for Benny, who is fighting and needs a liver transplant. Autumn, who is fighting and just had another brain surgery. Ava, who is fighting and is terminal with a brain tumor. Never forget to pray for yourself as well, and thank you so much for all of your thoughts and prayers and support. Every one of you is helping more than you can imagine. 

After several hours of infusions here at the hospital, then—drumroll—we hook her up to a portable backpack pump and bring her home to finish the infusion! I will take care of her from there, and set my alarms for each med needed throughout the night and day to keep her comfortable. I’m a little nervous because that’s a lot of pressure on me and there is no room for failure. So I must succeed and I know I can handle it!! We are so excited to try this out. She will be so much more comfortable at home and have her kitty, Moonie, by her side! . . .

August 25

. . . I woke to worrying and negative thoughts. I had my coffee and kept quiet and decided to take a dip in the hot tub to ease my aching body and cry. Joe never lets me have too long of a time alone with my thoughts because he knows where they go. He came out and made me talk through them. And while I was sitting there crying, I felt an instant calm come over me. I told him that, and it amazes me how much God is with me. With us. And is really pushing me to trust Him. And I do. I have faith. I just don’t know what His plan is. What He wants us to learn from this. Is she going to make it, and be stronger, and teach others how to be strong? Or does He want her to be with Him? This is a test for all of us, I know this much. 

The moments in time when we watch the pain and suffering take something from us. Forcing a reciprocating view of strength also takes something from us. And it is literally exhausting. So I gathered myself together and decided I was going to make her pancakes, and then my homemade meatballs, and stuffed jalapeños wrapped in bacon. I spent hours in the kitchen yesterday and probably made the best meatballs of my lifetime. All the while, caring for her and keeping her comfortable. 

 

I was probably too tired to have taken on so much because I ended up messing up her meds. I rushed to give her four o’clock meds and gave two Ativan instead of two Zofran, and I am not sure how to explain to you the sudden realization and fear I had. I immediately began Googling and calling the nurse line. I didn’t get an answer right away, and texted my friend and my sister. I was internally freaking out. I thought I was about to kill my own kid. Or cause her more pain and suffering needing to have her stomach pumped. I finally heard back from a nurse and everything was fine. She would be fine, just sleepy, and I needed to calm down. 

The nurse messaged me the rest of the night to keep checking on me. Sent me pictures of her dogs, too, just to help me feel better. I have so many people on my side who will be there for me any time I need them. I just don’t know what to say or how to ask, and when they ask if I’m okay I want to fall apart. 

I’m not okay. But I am taking every day and trying to make it the best—even those days with moments where I want to curl up in a ball and I need my mom. We always need our mothers. Mine has been gone for 20 years and I still need her. A mother’s love is just different. Their touch and presence changes everything. It’s soothing and it’s comforting. It’s home.

September 6

On our way to begin round four. Ro has been “okay” when we ask her, but from what we see she has withdrawn. She seems to be depressed. I think the hair loss that is beginning to show is weighing heavy. She’s a fourteen-year-old girl and their hair is everything to them. No matter what cool wigs and scarves they have now, she just doesn’t want to talk about them. I know she can rock any look she chooses. I even offered to shave my head when the time comes to shave hers. She said to please not do that because I would look awful. Lol. She said she finally likes my hair. Oh how I love this kid. 

I did get her to start writing in a journal and made her draw too. She dove into school work all day yesterday to keep her mind occupied, but was very quiet. She would just tap the seat next to her as if to say come sit by me, mom. So I’d sit and she would hold my hand. She just stares at me. Into my eyes and says nothing. She rubs her little thumb over mine back and forth and just quietly looks. I have always had a deep connection with her.

She’s so scared. The pain she has to endure every two weeks would put anyone on their knees. The fear of not being able to breath every single time. The inflammation of every organ makes her feel as if they are going to explode. The weakness, the nausea, the diarrhea. And all I can do is hold her hand. I will tap my heart and look at her and she knows I’m holding her tight. Pray for her mindset and her strength to overcome. 

We didn’t get the news we wanted, but we were told it’s not time to worry yet. Her counts didn’t come back good. They decided to have her do this treatment even though her ANC is low. Her tumor marker didn’t decrease again. So the plan is to do this treatment, get labs done this coming Wednesday, and then get a pet scan the following week. Once we see photo results we decide if we try a new treatment plan. Pray that this tumor has shrunk in her stomach and esophagus. We came in anticipating good news, so right now it’s kind of hard to swallow.

 

September 7

…She figured out that her next session is right before homecoming, and she is upset she will be too sick and exhausted to attend. I told her not to worry, and that I will take her and sit in the parking lot the entire time and wait until she is ready to leave. And be right there if she needs me. Once they told us her ANC number yesterday, I knew this was going to happen. If we can’t get that number up, I’m not sure how we can let her go. But I told her we would figure it out and we will get her there. 

 

September 9

This was Ro last evening. This is one of the few smiles we got to see. Yes, she is sick and has lots of pains and is overly exhausted; but this guy [our dog, Trooper] has stepped up in the last week and actually made her smile. So I wanted to give you a little back story on him. 

This is our boy, Trooper. And let me say she hasn’t liked him very much, if at all the last two years. It began with seeing a post from a lady needing to re-home puppies because as she said, she needed to move. Something touched me in the photo. I just “had a feeling” that I was meant to have one of these cuties. I always follow my intuition, if you haven’t gathered that thus far reading my posts. Well, all of the pups were spoken for, so it was a bit heartbreaking to me because it just didn’t fit with what my gut told me. About two days later the lady said one pup was returned, and a few people looked at him and chose not to take him. 

Even though I wanted a girl I decided to take a look. I drove over with Ro and her friend, but I didn’t want him either. The girls did, of course, because he was a tiny puppy. The only reason I took him was because I couldn’t leave him there. I won’t go into detail about that, I just couldn’t leave him and still be able to sleep at night. So he came home with us. And my goodness was he so adorable. Best puppy breath. Such a little turd. It was like having a baby all over again.

The first two months I honestly wanted to re-home him. He was too much for me. So I started training right away. We went through three trainers in a year’s time. The conclusion was made that some dogs are smart and some dogs are lovable. Well we got a lovable one. Throughout that first year I made the comment so many times that God was up there laughing at me. Afterall, He’d given me a sign that this was my dog.

 

I wanted to give up so many times, but knew there was a reason he came into my life. He is such a lover. He never has left my side. He 100% is the biggest idiot. Ro has despised this boy and was always so annoyed by him. He chases her cat, he chews up her stuffed animals, he runs around like a big bull and knocks things over. 

Fast forward to now, and he is everything she needs right now. He just knows she needs cuddles. He is right there when she wakes up. He is right there when she is vomiting. He is right there in the bathroom with us while she takes a bath. She is actually calling for him to lay with her if he is in another room. So as crazy as it seems, he was meant for us. And I can’t thank God enough for knowing what I would need more than I ever could. Trust in Him.

September 12

. . . She keeps saying she is sorry. She keeps blaming herself for having cancer. For causing everyone sadness and pain. This is what we have been telling you about our child. She never thinks of herself. I told her to never ever apologize and she has no blame whatsoever in this. None of us do. There is no explanation. There is no understanding. There is no blame. I can’t question it anymore because I will never have an answer. She will never have an answer. She needs to be the kid that has the treatment plan that goes in the books as a result for all other kids that follow. We need to be the family that can tell our story and fight for other children and families in the future. We need to look back and say, remember when I almost died and how I fought to be who I am today.

September 15

We had a little setback yesterday. She became nauseous again. She just wasn’t feeling well. Then she vomited a blood clot, and it just messed with her mind the rest of the day. She asked me so many questions about when my mom had cancer and wanted to know if she would die too. 

She is worried about it coming back. She is worried she will never be able to eat normal again. She is worried she will never feel good again. Our minds have way too much power over us. Getting control of your own mind is probably the most difficult part in all of this. It plays a lead role; that’s for sure. 

. . .She said she has been praying every night and writing in a journal and it has been helping. But she said she just needs me to keep holding her. And she is afraid if it comes back, I won’t be there. I just don’t know how to help her. I prayed that He would guide my words from this point on. I’m trying to keep her going. To keep her brave and strong and fight. And my heart and mind are crumbling when she says these things. I’m holding my biggest fears and hers all inside. . . .

We took her to the football game. She chatted up a storm with her friends. It was so nice to hear her laughing and see her happy. . . .

September 20

. . .Finally posting some really good news. Happy tears for once. First, the ultrasound shows all of the clots in her legs are gone!!! Second, her tumors have shrunk a large amount! The scans were shown to us side by side. The first one compared to today’s, and the difference is significant. The first scan shows the tumor in her esophagus, the very large tumor in her stomach, then the remainder of her entire abdomen filled as almost a whole with cancer. The liver was completely full. The lungs had spots. Some lower in the intestines which could have been inflammation. But all very dark. The new scan shows the esophagus very light, the entire stomach tumor gone! The liver, lungs, everything so light!!!!! The protein marker score should be between 0-5. We began in upper 80’s. Two weeks ago we were in the 50’s and today we are at 37!!! This is absolutely amazing and we know this treatment is working; may be moving slow but we are moving in the right direction! 

She has been crying with relief since we got the news. We are beginning her fifth round here in a few moments. We are staying in the hospital for this round. The plan is to dose her high with anti-nausea meds and steroids, so she is well enough for homecoming this Saturday!! Thank you all for the prayers. Thank you for the support. We can continue this fight because of you! These results will help make her stronger knowing all of the pain is worth it!!

I didn’t praise God in my earlier post and it has been on my mind. He deserves so much Glory. He deserves our undying devotion and gratitude. When Ro had a moment alone with me, she actually said, “God really does care about me,” and it struck me in the heart that she possibly doubted He was there with her. We needed this win today. . . .

September 24

Yesterday was another rough day. After getting home from the hospital she quickly took a shower and had her hair done in our home. Then her hands developed a chemical burn from the chemo. Another bad reaction. The pain was unbearable so I wrapped them in ointment and gave her pain meds and she fell asleep for three hours. She woke up to get her makeup done and dress on and go to Homecoming! She was adamant that she was going. She made it!! 

We could not have made it without the support team we have. We have so many people to thank for her reaching this goal. Her hair, her makeup, the ride!! Her nurses and doctors doing everything they could for her. Her school does everything they can for her. We have walked this journey with all of you by our side and we could not have done this alone. Our lives have changed so drastically, and we can never ever thank all of you enough or show our appreciation as we feel it. She kept saying, “I did it!” And she sure did. She stayed the entire time. She came out to change into tennis shoes and take a pain pill and went right back in. She has the best of friends who stuck by her side and made sure she was okay  the entire night. She had so much fun and is still talking about it and showing the pictures and videos she took. 

 

September 25

So the last two days haven’t been the easiest. Sunday she slept almost the entire day because of the pain pills she needed. She is having some reactions on her extremities and in her throat from the chemo that makes them feel like they are on fire. Today wasn’t as bad as yesterday, and hoping tomorrow will be a little better. We are struggling getting her to get fluids down and obviously only liquid nourishment. However, she is doing alright. 

 

Nighttime is usually the worst because there are no distractions, and that’s when she focuses on the pain and sickness and lets her mind go in the direction we don’t want it to. I’m not sure if this will ever be easy. Or get less difficult. It seems she just keeps having more and more reactions. Her doctor says he won’t skip a week and we have to keep on schedule, but he can cut back the amount for each slightly. 

Being a mother and watching this type of pain is torture. I can only hold her. Make sure I stay on schedule with all of her meds. Listening to her moan and be so tired and so ill makes me want to scream at the top of my lungs and sob. My heart is in anguish. Seeing her push herself and go to the dance was absolutely everything. Everything. She has so many pictures and videos and stories to tell. She needed that. She felt beautiful and confident and so sure of herself. Getting to see her friends and be a part of something gave her a goal. Something to push for. Something to live for. I will never forget the smile she had. So true and beaming. 

September 26

“Again I say to you that if two of you agree on earth concerning anything that they ask, it will be done for them by my Father in heaven. For where two or three are gathered together in My name, I am there in the midst of them.”  --Matthew 18:19-20 (NKJV) 

September 28

We were having a great deal of trouble trying to get her to eat and drink. Prayers were said and yesterday she ate!! She is doing better today as well, and is working hard to eat and drink. She is laughing and talking and has much better spirits. Her hands and feet have lightened up and no longer look like they were burnt. She has no more pain in them right now either!! If this continues, we will have a solid seven days of nourishment before her next treatment! I know I say it all the time, but the power of prayer is just amazing. 

 

October 4

. . . We just started her chemo drip. It just doesn’t get any easier watching it. She was a little anxious today and not wanting to do this. She said she would and could do it, she just doesn’t want to anymore. The pain she had from the last round was awful and unexpected. She said it felt like she was putting her hands on a hot stove. Who wouldn’t have anxiety? She says she just wishes it were easier. Then she said, “Mom, I’m suffering. You only have to watch me suffer”. . . .

I’m scared too. I don’t know what may happen with each treatment. None have been the same, and they are getting worse. The neuropathy, the pain, the hypertension, weakness, struggling to breathe, throat sores, lumps in her arm pits, hyperpigmentation, acne sores, hair loss, vomiting, constipation then diarrhea. And like that isn’t bad enough, she has nightmares so she doesn’t want to sleep by herself anymore. 

 

October 5

Last night I prayed that Jesus would walk down these halls and heal every child in here. There are 21 rooms and each is filled with children ages 2-16. The parents walking around look like zombies. I blend right in. We are all a mess. Tired, disheveled. We wear a mask of exhaustion and sadness. It’s a torment we all share and don’t talk about. You just look at each other and you know. 

Some great news! Her tumor marker is down to 19!!!! Happy dance! Happy dance!! 

On a less than good news side note: the doctor said there is no end game in sight. He says every two months we will do scans, but even if her marker goes between 0-5 we are still looking at two years of treatments. He says the cancer will hide and pop up when least expected. But we are taking this as a win!!!!

 

October 7

We are home and comfortable. Ro says she had a dream of being on a comfy couch in front of a fireplace. She says all of our pets that have passed on were there. She says also my mother, my aunt Paula, and Grandma Millie were there. She says she thinks it was Grandma Millie but isn’t sure what she looks like. Everyone was around her and hugging her. She doesn’t remember anyone speaking to her, but she felt good and happy. It reminded me of my Aunt Paula’s funeral service when everyone had the opportunity to stand up and share a memory of her. Of course, Ro stood up to share. She was three or four I believe. And anyone who was there will never forget this. She said she was just at Aunt Paula’s house showing her her ring worm. Yes, we all knew at that moment whose kid she was. I wish those three crazy ladies were still with us. But I love that they were all together visiting my baby even if in a dream.

 

October 10

I was told today that shaving Cairo’s head is her rite of passage. She has taken a new form and has become a warrior. This shaved head is her war paint. I know she doesn’t feel that way at the moment and will need an adjustment period. But I will pray that desire to fight will burn with more fire inside her than ever before. Shaving her head wasn’t nearly as tough as we thought. It was worse watching it fall out all the time. She says that she feels like her hair was the last thing she had of herself. She’s lost everything now. But I told her she should look at it like shedding. Now she can start new. Start fresh. She can become anything she puts her mind to, and eventually her body will follow. 

 

October 12

She asked me today if a boy would ever want to date her since she’s had cancer. Will anyone love her? I told her that she’s gone through so much and she won’t ever need to settle for anything less than she is worth, and she will find someone who loves every part of her. No one is going to care that she had cancer or not date her because of it. She is going to be ahead of the game knowing what is most important in life. She will find a really special someone who sees how amazing she is. I’m reaching out to also ask you to pray for her to have a strong healthy heart. And be at peace with where she is at this moment in time.

October 14

I’m sitting on the front porch wrapped in a blanket, drinking my coffee, and listening to the soothing rain. You have these moments where things seem like they were. When you really didn’t have any big worries. Just those little everyday life worries. When you could breathe. When you could enjoy a moment in time and not have tears streaming down your face. Weekends we always had plans. Picking up and doing. Ro loved to go shopping or skating. We loved spending the sunny days on the water. Life keeps passing by us now. It’s on hold in our home. You constantly think how unfair it is. You desperately ache for reprieve. We were up two nights ago with her in agonizing pain trying to move her bowels. I was so scared she had perforated. One more worry to add to this list. She is doing much better now and the doctor thinks we are clear. . . .

October 17

We are one day away from beginning round seven. I’m going through so many thoughts and emotions. I really want to know the number of the tumor marker. That is the first thing we find out, and that number will set the tone for this treatment. Lots of prayers are needed for that marker to have decreased tremendously again! 

 

Ro needs prayers for her little hands and feet to stop burning. The meds are helping the pain. They gave us a medicated lotion to use to help keep moisture in and allow heat to come out, to aid in less peeling of her skin. That is also helping a little. More prayers for her heart to calm and function normally, and for her anxiety to cease. She had barely any vomiting and diarrhea this last time! I am hoping we can control that again as well. She does not want to do this again. She says it’s too much. I yelled at her last night out of frustration because she isn’t drinking enough. Then I cried and apologized for about a half hour because I don’t want to do that to her. She is working so hard and trying so hard and nothing is easy! 

I just heard her talking to her cat in a British accent. So I know she is awake. This is a new thing of hers and it is actually pretty funny. She just called her cat a scallywag and said to get out from inside her castle walls. I love when she is herself. This means she is feeling good. I love my little weirdo.

October 18

Great news!!!!! Her tumor marker is down again to 10.3!!!!!!! Praise the Lord!

October 25

Another beautiful day has begun. The sky had a twist of pink across it as the sun rose. It was stunning to see. I’m going to make sure to take Roey for a drive today to look at the colorful trees. She has been doing so well this round again. It has been another huge blessing. She is asking for food and asking for drinks. I’m not having to constantly push her. Her nausea is minimal and controlled. Her diarrhea is iffy. If that’s a word. But it’s the best way to describe that bodily function this moment in time. She has been laughing so much these last few days. . . .

 

October 29

Isaiah 60:22 popped up in my feed this morning: “At the right time, I, the LORD, will make it happen” (NLT).

As soon as we pulled out of the parking lot after the benefit supper for Cairo this evening, Cairo started crying. She said she doesn’t understand why so many people care about her. She’s fourteen. She feels like she’s on display instead of seeing the whole picture. I’m driving and holding her hand, and I tell her that no one is there because she has cancer. They are there because she is fighting and they want her to keep going and defeat cancer. They want her to know that they see how strong she is. That’s what they see when they look at her. They see a strong and young and beautiful and resilient child that has inspired faith in those that know her. That can still laugh through all the pain and is still so determined to get through this. I told her they see her—Cairo. They love her and they just want to know her and hug her and tell her they are on this journey too. That she will never ever walk alone. 

. . .Ro says when she defeats this we are having a huge party. So everyone be prepared for another gathering like this one was. I know that God’s plan is near. He is healing her. She is going to beat this and we will be celebrating with all of you. Our family has grown along with our hearts. 

 

November 1

Today is round eight. Her weight stayed the same and her marker is down to 6 points!!! 

 

So I have been getting many questions from friends and family, and I wanted to try, as best I am able, to clear up some answers. A CEA (CEA is a protein found in developing babies in the womb, that disappears or is very low after birth) tumor marker is only one of the ways we use blood work to test for levels of growth. This is used on her because she has a carcinoma type cancer. She has Adenocarcinoma. Adults that are healthy should produce little to none of this protein. This is the protein per milliliter of blood. This is a way to tell us that she is or isn’t responding to her treatments. Levels that range from 0-2 could mean it’s a small tumor. Levels up to 10 can mean the cancer is quite extensive, and then going above 20 means it is spreading. 

We began in the 80’s. We almost lost our baby. We were almost too late. So the doctors said there was no cure. They wouldn’t say stage 4 or give us a timeframe. They said we are going to treat this and we will fight with everything they have. And they did. They have never treated a child with this form of cancer. They found who has, and met with them. They worked together and researched and tested different chemos on her tissue samples. They found what was working on the samples, and then fought with the insurance to provide those treatments. When I have mentioned having an amazing team here at this hospital I meant it. I trust her doctors more than I can say. 

So back to the tumor marker—even when we get to zero we can’t stop treatment. That doesn’t mean her cancer is gone. This is why we will have the CT scan, then still have round 9. Once her levels remain at zero, we will then try a new treatment plan. Less aggressive per se. But one day at a time. 

November 11

Joe and I took a drive and had some lunch together today. It was my first venture away from Ro since July 12. We have been together side by side every single second since that horrific day. As we were driving, I noticed a large rain cloud ahead in the sky. From my peripheral vision I could see a beam of light peaking through. I started thinking that maybe this is a sign of how life can seem dark and dense with storms brewing, and how at times that’s all you see. But there’s always the light. We may not notice it at first, but when you turn the right direction, you’ll see it. It always finds its way through. It made me smile as we drove on. And I silently thanked God for continuing to shine light for me to see.

November 15

We started this day off with Ro falling down the stairs. She is ok, just some bumps and bruises. Her labs showed that her tumor marker only went down to 5.1. It’s not what we were hoping for, but down is still good. Her scan shows a night and day difference between the first one and now this one. We are waiting on full details, but based on the visual we saw it’s definitely getting better. Our doctor wants to keep her on this treatment schedule for another two months and then do another scan. . . . We will keep faithfully praying. Basically begging and pleading daily for God to heal her. As always, I thank you so much for praying for us. Please don’t give up. We need you.

November 16

. . . But then still two [more] years [of treatment]. I know stage four cancer is a death sentence. I know technology is changing daily. All we have is prayer that the right drugs, the right people, and the right treatments have been put before us. Now we pray that we can keep her whole in heart and mind.

This right here: Ro said, I’m getting my life back. She came downstairs with this wig and makeup on. 

November 18

We finished round nine yesterday. Ro definitely won this round. I’m feeling more positive about our progress and so is she. It is a struggle at times when I see her ill and in pain, and we begin to allow doubt to creep in. But that’s where it stops. Remembering where we began and knowing where we are is a true testament to answered prayers. God is constant in our lives. Ro is not even vomiting during treatments. She isn’t struggling to breathe. Her heart hasn’t been as erratic. Her hands and feet aren’t feeling as if they are on fire.…Hug your babies today and tell them you are proud and you love them. And let them know God loves them too. And He will never leave them. 

Happy Thanksgiving! There are so many things that I am thankful and grateful for today and every day. Ro is here and I can hug her. She will be able to eat today. She will have enough energy to walk on her own. Her spirits are up and she will laugh and be herself. 

It doesn’t feel like Thanksgiving to us. Right now nothing is what it was. Maybe someday soon it will be. But when I woke this morning, the first thing I heard was the birds singing outside, and it made me smile. I love hearing the birds and watching them. I’m going to sit and drink my coffee on the porch and enjoy them. I’m going to enjoy every moment of this day that I have been blessed with. I’m going to enjoy every precious moment with my daughter, and fill my heart with happiness and love and make memories. Remember to see the little things and hold them in your heart and tuck them away to have them forever.