Mile #32 in honor of Kaitlyn

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Story

Dear Tattoo Tom,
I think it's amazing what you do. Thank you so much! We would be so grateful to have our daughter honored.

Let me share with you what I like to call, Kaitlyn's Journey. She is amazing. In 2009, she was getting fevers up to 104°- 105.° Doctors never could determine what was going on.
In 2011, we moved to El Paso, TX. She started school that August at Ituarte Elementary due to her home school being too full. In a few weeks, she transferred over to Paso del Norte Elementary. Her father left for his 4th tour to Afghanistan the 3rd week of September. Shortly after that, I began seeing changes in her eating and sleeping patterns. She ate and slept less, more everyday. I took her to doctors and they concluded it was depression due to her father's absence. I knew they were wrong. As a military family, his absence was routine and not out of the ordinary. I always made sure our children were secure and well taken care of when he was away. Days turned into weeks and weeks to months going through the same thing; taking her to doctors and emergency rooms, desperately trying to get someone to help me help her. I was hoping they would listen to me and why I felt they were wrong in diagnosing her as depressed. I felt it in my heart it was more, but that only fell on deaf ears. During that time, they would give her IV fluid and nutrients since she wouldn't eat. This began in September, until November. She had just turned 7 years old that Monday, before Thanksgiving. That Wednesday, I took her again to the doctor. Again, I was told it was depression and maybe she needed hospitalization.(She had begun to see a therapist). Angry at not being heard, I did plea through tears and anguish to the doctors and nurses, and anyone listening to "Please, do bloodwork, xrays, ANYTHING!...tell me there is nothing wrong with my baby's body, and I will gladly take her to any mental hospital you want me too! Tell me I am wrong, because I feel it in my heart that something IS wrong!" I'm holding Kaitlyn and sobbing because I didn't know where to go from there! I looked around, and a roomful of doctors and nurses just were looking back at me...not a word, but utter silence. Then, one doctor comes forward, and tells us to go get lab work done. That in itself was a task. Kaitlyn was scared and fighting me because she didn't want the needle stick.

We got home that day at about 5pm. I had a message on our answering machine that the lab wanted me to call them back. It was the day before Thanksgiving, no one was available when I did call back. So we faced another weekend getting her an IV at the ER, waiting for Monday to get here.

Monday, November 28, 2011 - I took her back to the Dr. They said they couldn't see her that day, but return in the morning. During this whole time, Kaitlyn didn't miss school, so back to school she went. That day after school, she came crying for me to take her to the hospital. She had not complained of pain before and never asked to go, so I knew my suspicions were correct.

I took her to the ER again. This time we were seeing a new doctor (We kept seeing the same one before and it got to the point he wouldn't even go in the room and just order her IV and tell me she was manic depressant). But this day was different. This doctor listened to what I told him and did a physical exam. Right away he ordered an ultrasound. Kaitlyn was in pain as she laid on her back. Something I had not witness before. We were taken back to the ER room. Doctors and nurses came and went. They would check her and leave without a word. Finally, I asked what was happening. "We are setting up a transfer by ambulance to Children's Providence Hospital. I'm sorry, but your daughter has a tumor and will need surgery." So many thoughts went through my mind. First, I wasn't crazy for "this feeling of something was wrong" and "oh no, she needs surgery, my poor Baby!"
I quickly found out how naïve I was. I guess I thought she has a tumor, surgeons will get it out, she'll take time to heal, our nightmare of no eating and no sleeping will be over, and we would get our girl back!

During our transfer, I received a call from my husband in Afghanistan that he was going out on patrol. I had withheld all I had been going through with Kaitlyn. I figured I didn't need to worry him, especially out where he faced life threatening situations. I knew I had to tell him, in case I had to do a red cross message. He was concerned, but I told him not to worry, her brother and I were taking care of everything. I was greeted by this nurse, red top and khaki pants. I wish I could remember her name. She stayed with my the whole time.

That Monday night, they took Kaitlyn back to the operating room. They conducted a biopsy of the tumor, and a bone marrow biopsy.

On Tuesday, I was taken back to the doctors office down the hall from Kaitlyn's hospital room. The doctor informed me that Kaitlyn had lymphoma. Lymphoma?....what?...Cancer? My daughter has cancer?...knowing she had the tumor, never had I tied it with cancer. I remember in the 8th grade I had raised money for kids at St. Jude. I heard of cancer, just never knew someone with cancer, and not a child. How do I tell her? How do I tell my husband? My son?

I walked down the hallway to her room. I didn't know how to tell her. I explained to her that we found out why she felt bad. She had this "thing" that didn't belong inside her. She asked back, "like a boogerball?" Yes, I told her. From then on, that's what she called the tumor. The same nurse was with me, and kept telling me all would be ok.
I called the Red Cross, and began the process of bringing my husband home. This meant no contact until he was back in the states.

Later that night, I met with her oncologist. He informed me that Kaitlyn did not have Lymphoma. He said we will just say it's a tumor. My mind just went to the thought that's it's just a tumor, Not cancer. I was so happy and grateful! My mind went back to her just getting surgery to remove it. Yes!!

They kept Kaitlyn comfortable. On Thursdayy, they asked when my husband was getting home. I didn't know. We had no contact. On Friday, December 2, 2011, the oncologist asked to speak with me. They wanted to wait until my husband was here, but couldn't wait any longer. That's when I was told Kaitlyn DID have cancer. She had stage III group III Embryonal Rhabdomyosarcoma. It's a rare cancer, usually in the arms, legs, or orbit of the eyes. Usually meant amputation. He did say hers was terminal. Her tumor was wrapped around all the veins and arteries in the core of her body to include the aorta. It had not been seen before like this. They were sorry, but there was nothing they could do but make her comfortable for as long as she lived. I asked about chemotherapy. He informed me that it may or may not work. I asked about other hospitals. He mentioned some options. I did not want her to go on a trial chemotherapy, so I chose a chemotherapy that had a protocol. It was 48 sessions of chemotherapy that consisted of 3 different drugs plus anti-nausea and pain medications. All this would take place here in El Paso. I was so devastated. My mystery nurse just held my hand and reminded me I wasn't alone.

Kaitlyn was again taken to the operating room to get a portacath inserted in her upper chest to receive the chemotherapy. While that was taking place, I met the pediatric surgeon. He informed me that he would be unable to perform surgery to remove her tumor. This was more devastating news. I asked if any surgeon would. He said because of how the tumor was wrapped around the aorta and other main arteries and vessels, no doctor in the country could successfully remove her tumor and would be fatal. So there it was...chemo was our only hope. All went well with her surgery. Now the bloodwork would be taken from the port and allow her black and blue veins on her arms start healing. It sure was a long 5 days already. Talking and explaining all this to Kaitlyn was heart wrenching. Speaking to your 7 year old child not just about death, but their own death is not a conversation that anyone should ever need to have. I had spoken about God and heaven to my children since they were babies, so the understanding of that made it easier to talk about existing, living, and death. Again, my mystery nurse said Kaitlyn and I were making a great team and not to worry.

December 3, 2011, my husband was finally arriving to El Paso from Afghanistan. My son and I went to pick him up from the airport while my family stayed with Kaitlyn at the hospital. Her diagnosis had changed from the last time we spoke. I remember thinking "What words do I use?" I remember seeing him walk through the arriving gate with a worried look on him. Our son, Daniel ran to him and jumped in his arms, so happy to see him. It had been almost 3 months since he last seen him. He greeted him, and me. He was in a hurry to get to the hospital. I asked him to stop. There was something I had to tell him. I explained how her diagnosis went from lymphoma to Embryonal Rhadomysarcoma. I explained how our daughter was dying, and all we could do was love her for the time she had left. That no surgeon would perform surgery without it being fatal, radiation would be fatal as well, and all they could do would be chemo and pray it helps her. He just froze like time stood still. Our hearts were broken. So we hurried back to the hospital so first, our family could be together again, and secondly, to start chemo. We were so relieved my husband was home to start this journey together. I was telling my husband about the nurse that never left my side the whole week. When getting coffee she saw us, and came to say she was happy to see he made it home safely, and wished us well on Kaitlyn's journey. Afterwards, I wanted to Thank her again. We went to ask for her. No one knew who we were speaking of. No one knew anyone by the way we described her. I can't explain that, but I am so grateful for my Guardian Angel Nurse. I think that was our first look at God's hand in this journey.

Chemo was hard on Kaitlyn. It seemed to just exhaust all her energy from her. It made her sick and made her body hurt. She would have weekly chemo. However, were able to go home right before Christmas. It was during our ride home that Kaitlyn told me not to worry. She said God spoke to her and asked her to tell me not to worry. I asked her what does God sound like. She said, "He sounds like he talks on a microphone." She looked like she was at peace with everything. She also made a stop at the hair salon. Her hair had already begun to fall out. Every morning she would gather her hair from her pillowcase and gently place it in a sandwich bag. She decided it was time to shave it off. So that's what she did. She looked as beautiful as ever. Her strength and bravery shined brighter than any light you could ever lay eyes on. She is so amazing.

We finally got home. I can't put into words how our Christmas experience was that year. Bittersweet to say the least. I would watch her sleep in her own bed. I would pray that God would heal her. I would pray for the day she could sleep in her own bed without having cancer. I would pray to see her smile without sadness, or more, hear her laugh, it had been months since I had heard that. We stayed home until right after New Years.

After returning to the hospital, it was back to chemo, bloodwork, and scans. The second week of January, another look at God's hand in her journey happened. Doctors reviewed her tests and chemo had shrunk her tumor. Her doctors here collaborated with other doctors from another hospital to see if anything else could be done. They gave us the great news that surgery could be done! It had never been done before and was still a high risk. This was something that Kaitlyn really wanted. She wanted this "boogerball" out of her. She wasn't scared or worried. Because of her, we supported her decision. After all, she was the one fighting for her life.

On January 18, 2012, this courageous 37 lb, 7 year old, was facing a 5 hour surgery. She was all smiles heading to the operating room, but had tears in her eyes from being away in surgery again. Five hours came and went. Every hour a nurse would come out and just nod "no" meaning they had not removed her tumor yet. Ten hours later...still waiting...and still "no." Thirteen hours later...the surgeon stands at the doorway and calls my husband and I over to the hallway. He proceeds to inform us that he successfully removed the tumor, however another surgeon was called in. Both her kidney's stopped working during the surgery. Both kidney's had blood clots in them that prevented them from functioning. They had to hurriedly staple her 9 inch surgical opening. The other surgeon was able to save one kidney, and had to remove the other one. We would not know if her remaining kidney would even begin to function or if it did, how well it would function. I informed them that my father had died of pulmonary embolism, or blood clot to the lungs. With that information, Kaitlyn was tested for blood disorders. She was then transferred that night to the pediatric intensive care unit.

Once she was settled, they said we could go in to see her. This was about 11pm. I walked in and walked right out, telling them they have us in the wrong room. They assured us that was her. Due to the swelling, she was unrecognizable. I peeked at her feet and saw her bright blue toenails that I had done the night before. Yes, it was her. She was 37lbs that morning, and later found out she was 76lbs that night. She had six IV's on her, one to every extremity, and groin. She had tubes helping her breathe and was nonresponsive. It was when her brother held her hand that night that her eyes opened. She was supposed to have been in an induced sleep, so nurses where shocked to see her eyes open and tubes in her mouth. Drs. and nurses came in throughout the night. The next couple of days she stayed on oxygen and still connected to tubes to help her breathe, and later a feeding tube. Results came back on her blood disorder, and had tested positive for one particular one, +MTHFR. This was when, again, we witnessed God's hand in her journey. Kaitlyn could have very well died from the blood clots in her kidney's without us knowing she had this disorder. Her brother, father and I were tested for this disorder and tested positive. If it wasn't for her cancer, we wouldn't have learned this. So in a way, cancer not only saved her life, her going through all this saved her family. (We all treat the disorder now.) Her kidney did begin to work, but not efficiently. She began receiving dialysis. She continued dialysis that week while in the intensive care unit. In about a week, she was moved back to the pediatric cancer unit.

Here she continued living at the hospital and receiving chemo, having lab work, and scans. I would spend the day with Kaitlyn, while her father went to work and brother to school. Her Dad would pick up Daniel from school and either take him back to work with him or head over to the hospital. We would spend a few hours together, then Daniel and I would head home to get ready for the next day. In the morning, I would take Daniel to school and head to the hospital so her father could go to work. This was our daily routine.
In late February we received the news that she could now receive radiation therapy because of the removal of both the tumor and kidney. She would be transferred by ambulance to the cancer center to receive radiation. She did this for about 8 weeks. The radiation was intense, and made her feel worse than the chemo. She suffered 1st degree burns to her back from the radiation burning straight through her body. Once she finished therapy, back to the hospital for more chemo and testing. During the summer months, Kaitlyn continued her usual; chemo, labs, and scans. We were allowed on occasion, depending on lab results, to go home 2- 3 days at a time to give us all a break from the hospital.

During this time, Kaitlyn also began home school. She received 2 hour sessions 3 times a week. She had missed 1st grade after Thanksgiving, and what had started to be second grade. There was so much catching up for her. Due to the hardship of her illness, school had been pushed aside. It was almost like having to start over. She really put forth a lot of effort in between her chemo and home school. Some side effects of chemo made it hard to remember things she had learned. On October 22, 2012, Kaitlyn received her last doses of chemotherapy. The very next day, October 23, 2012, Kaitlyn was official in REMISSION and able to leave the hospital for good.

That following week, Kaitlyn began school again. She continued to see her oncologist for labs and scans every 4 weeks for the next year. She also would see her kidney doctor to make sure no complications occurred. In February of 2013, she had oral surgery. Due to the side effects of chemo, she needed to have multiple teeth capped. Because of her blood disorder, every surgery puts her at a high risk for blood clots. That April, she faced yet another surgery. Since test showed Kaitlyn was still in remission, she was able to have her portacath removed. Again, missing weeks of school. For the rest of that year, she followed up with Drs every other month. for the year after that. In the Spring of 2014, Kaitlyn began having issues with her gallbladder. This continued until the fall. On September 4, 2014, Kaitlyn had surgery to remove her gallbladder. As a precaution, she also had surgery to remove her appendix as well. She missed weeks of school during this time.

After this surgery, Kaitlyn started having issues with her kidney and bladder. She began seeing an urologist, aside from her primary doctor, oncologists/hematologist, and nephrologist. She continued seeing each of them for issues and follow ups.

These follow ups continued for the remainder of that school year and continued until this past school year.

In August 2016, Kaitlyn had gone to the school nurse for pain. During triage, a lump was noticed to her left lower rib. After taking her to her oncologist, she was referred to a pediatric orthopedic surgeon for a bone biopsy. He diagnosed her as having a bone tumor and recommended surgery to remove it. On September 19, 2016 she had the benign tumor, or osteochondroma, removed. The surgeon did inform us that Kaitlyn would be getting these tumors for the rest of her life. Sometimes they won't be cancer, however, she may have cancerous ones as well. Now she has to be aware of her body changes since she had a cancerous tumor in her muscle and now tumor on her bone. Her recovery had her miss weeks of school once again.

Kaitlyn continues seeing her doctors as needed. She continues having problems with her kidney, bladder, complications with her lungs, breathing, and injury to her chest wall.
Kaitlyn puts effort and desires to overcome every obstacle that she faces. She puts so much effort in school and learning. Her desire to become a pediatric nurse drives her to study hard and focus on her health.

She has such a great team of Drs, nurses, teachers, friends, and family that have helped her progress to where she is today. I am so humbled every time I see her.
She is so devoted to getting ahead. In May, Kaitlyn won the national award from Read 180 for her improvement in reading. She began her 6th grade year at a 3rd grade level. She ended up at a 6th grade level. Now she enjoys reading all kinds of books. Becoming a better reader has given her more confidence in and outside the classroom.

Going through all she's gone through and missing school, and with the affects of chemotherapy, she tries so hard to feel like all the other kids. Sometimes her self esteem doesn't allow herself to feel as good as she should because she may occasionally take longer to learn than her peers. She only recently got her cancer free diagnosis in May 2017. Then in January of 2018, we found another lump in her rib. This time is was a cartilage tumor. She had surgery once again to get that removed in March of 2018. In January 2019, she got blood infusions for low ferritin levels. This year she started her freshman year of high school. Because big her health issues she is unable to play sports. However this year she found her place on the football team as an athletic trainer. Her passion is to pursue a career in the medical field, so being a trainer has been such a great opportunity. She continues her visits with her medical team.

We thank those that do so much for the cancer community! Many Blessings always, and wish you continued success and a safe journey! Pictures included are the night before her surgery to remove her tumor, one after she was out of the hospital, and a recent picture of her.


Sincerely,
The family of Kaitlyn Llanez
CSM Caesar, Diana, and Daniel Llanez

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