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Nora Travis Support & Medical Fund
Started by: Caitlin Deason
Nora Travis Support & Medical Fund
Sweet and strong Nora Travis came into this world on July 22, 2018. Lindsay and Harry Travis, her parents, received news that no parent wants to hear; their baby has cancer. Nora had a tumor on her kidney and it had to be removed including her kidney. Once the biopsy came back, they found out that their 4 month old has a rare form of cancer: Malignant Rhabdoid Tumor Stage 3. Treatment will include a combination of surgery, extensive and intense chemotherapy, and/or radiation, with a bone marrow transplant over 40 weeks. With that said, they are going to have many medical bills. If you are able to donate, I know that they appreciate any generosity as well as prayers for their little girl!
For more updates and other ways to contribute, follow the facebook group "Nora's Journey"
https://www.facebook.com/groups/365885764163238/
Latest Update
Visitation for Nora will be Sunday, March 10, 2019, 5:00-7:00 pm at Indian Creek Community Church in Olathe, KS with funeral services to follow on Monday, March 11 at 10:00am, also at Indian Creek Community Church. Burial will be at Olathe Memorial Cemetery.
Posted by Caitlin
March 6 at 6:33pm
48 hours after being admitted to PICU, Nora has still been losing blood in her abdomen. Fluid has continued to build, making breathing increasingly difficult for Nora. Each night has been very scary, with worsening symptoms, and stronger breathing supports applied each day. There came a point yesterday afternoon we had a sit down with the main PICU Doctor and Dr. Raj. We decided we needed another special CT scan to find out where the bleeding is coming from and to build a plan to give Nora some relief. Just doing this CT scan was a risk with Nora’s condition. It took an entire team and a bed full of monitors and equipment to get her through it.
Posted by Caitlin
March 4 at 12:16am
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A few hours later that CT scan confirmed the tumor grew back in the same place it was previously removed, and had ruptured again, spreading more cancer spots throughout her abdomen. With the ruptured tumor being the source of the bleeding, the risks were too high to remove it. There was nothing more we could do, and we exhausted every option possible to save Nora.
Posted by Caitlin
March 4 at 12:16am
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It’s with our heaviest hearts that we share the passing of our daughter Nora Michelle Travis this morning, March 3rd at 5:45 am. She passed peacefully, with no pain, holding both our hands, and in both of our arms. We are completely devastated to have lost such a beautiful, happy, baby. We will forever remember her amazing smile that lit up every room, and hundreds of other memories in her short 7 months with us. We are so proud to be parents of such a brave and courageous girl and we know she touched more lives that we can imagine. She is going to be missed in unspeakable ways. We have packed up and are driving home from Houston to Kansas City now. Details about funeral and memorial service times and locations will be posted in the next few days.
Posted by Caitlin
March 4 at 12:16am
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Mary Lemley — 5 years ago
I am so very sorry, my prayers are with you and your family
Marilyn Davis — 5 years ago
my heart just breaks for you. I pray for your comforting. All our family join you in your grief.
Now that we’ve had a little time to process the news I can write an update. After the ultrasound, the doctors discovered that Nora’s cancer has returned and grew through chemotherapy. It was not what anyone had expected at all. There is a mass in the cavity where her left kidney has been removed along with lots of little spots in the belly itself. After hearing this news, Harry was able to fly down to be with us during this incredibly difficult time. We were moved to PICU in order to be carefully monitored. She is losing blood, her abdomen is large and full of blood and fluid. This is causing her immense pain, difficulty breathing, and a rapid heart rate. She’s getting blood products about every 6 hours to try and make up for the blood loss. Mostly red blood cells, but she also received platelets to try and slow the bleeding, as well as prep for any emergency surgery that may happen.
Posted by Caitlin
February 28 at 4:57pm
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She’s getting blood products about every 6 hours to try and make up for the blood loss. Mostly red blood cells, but she also received platelets to try and slow the bleeding, as well as prep for any emergency surgery that may happen. She’s on high flow oxygen to help her labored breathing. She’s getting morphine and Tylenol to help make her comfortable. We did a CT scan to get more answers on where the bleeding is coming from. Unfortunately, it wasn’t able to show one area where the blood loss is happening. The plan for now is to keep Nora stable- with oxygen and blood transfusions- and give her time for the bleeding to hopefully stop on its own and to get the fluid out of her tummy.
Posted by Caitlin
February 28 at 4:56pm
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Once we get Nora to her base level we can talk about a new plan to attack the cancer another way. Unfortunately, Dr Raj will need to decide a new group of chemo drugs, treatment plan, or research study as the plan he has used in the past didn’t work for Nora. Words cannot describe how heartbroken we are by this news, but Harry & I are trying to remain positive and hopeful for Nora’s cure. God provides miracles everyday. Please pray for a miracle for our sweet baby girl.
Posted by Caitlin
February 28 at 4:54pm
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Mary Lemley — 5 years ago
Sending heartfelt prayers to you and your baby girl.🙏🏼
Here we are again. Prayers needed ASAP! 😞 Poor Nora isn’t doing well. Her tummy is distended, she’s not eating, she’s vomiting bright yellow, super agitated, high heart rate, blood in the urine, and weight is up. There aren’t clear answers right now as to what’s going on. We got labs this morning and we’ll be going for an ultrasound soon. Dr Raj thinks it could be related to the IV fluids- she’s not tolerating the amount she is getting. I also agree and don’t think it’s chemo related as it usually doesn’t hit this hard this fast and the yellow spit ups were happening before chemo. I just hope we can get clear answers soon and it’s nothing too serious. Prayers for my sweet girl! 🙏💗
Posted by Caitlin
February 27 at 4:13pm
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Round 4, Week 1 starts today! We got to Texas Children’s at 8:30am. So far we accessed the port, got labs & vitals, talked with the doctor, started IV fluids and was admitted this afternoon around 12:30-1. 🏩💉 Right now we are waiting on the chemo delivery. Nora has been super cranky today because she’s getting teeth! 🦷 I think she’s getting the 2 bottom teeth, definitely getting at least 1. I feel bad that it’s making her uncomfortable. This round is the full dosage of 2 of 3 chemos and still a 1/2 dose of cyclophosphamide (the one known to cause VOD.) She’s also getting a red blood cell transfusion tomorrow after day 2 of chemo- as a precaution- because her count was borderline low. This will hopefully save me from more hours in the clinic this week! I’m hopeful that this round of chemo goes just as smoothly as round 3- it couldn’t have gone better really. 🙏🙌
Posted by Caitlin
February 25 at 9:35pm
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We had a great time visiting with Daddy, Ellie, Travis, Caitlin & Rory and Kyle & Arianna this past weekend! We ate lots of yummy food and went to a butterfly exhibit- Ellie was afraid of the butterflies... yes... BUTTERFLIES! 😂🐛🦋 Thanks for coming down guys- we loved seeing you. 😊 This coming weekend Grandma & Grandpa are visiting! (Gay & Brian) We’re excited!! ❤️ Prayers for a smooth round of chemotherapy are appreciated!
Posted by Caitlin
February 25 at 9:35pm
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2/19 UPDATE- ROUND 3 COMPLETE! We had a visit Thursday and today for lab work, watching Nora’s blood counts closely. We are out of the “scary” time when infection risks are high. Her blood counts are recovering well- even keeping platelets high! Yay Nora!! This is the first round since starting chemo that we didn’t have an ER visit! Thank the Lord! We kinda expect to have an ER visit each round when her counts are low, but I’m so thankful we didn’t deal with that this time. 😊 We are taking this week off of chemo and will start “round 4” Monday. She’s getting the full vincristine dose, as well as a full doxorubicin dose, and 1/2 the cyclophosphamide dose since it’s the one known to cause VOD. We’re hopeful that Nora will do great with this dosage too. We will also be doing a CT scan and echocardiogram after this round.
Posted by Caitlin
February 19 at 4:25pm
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After that, we have round 5, and will consider a round 6- depending on how she does through the next 2 rounds & what Dr Raj thinks is best. Then radiation and then CELEBRATION! We’re getting closer! We have some special visitors coming up, so the next several weeks will hopefully go by smoothly & quickly. 💗 As always- thank you all for the support & prayers. 😊💗 Edit:* I’ve had a few people ask for my address- if you send something and I don’t tell you I got it- I didn’t get it. I will always tell you I received things! Definitely keep tracking numbers. I’ve had a couple of packages never show, even though they said delivered. They are kept in a locker and it’s a little bit of a wonky system.
Posted by Caitlin
February 19 at 4:25pm
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Round 3, Week 2 Update: Dr Raj decided to keep this round easy for Nora since she had VOD last round. With that said, we aren’t doing the small chemo doses on weeks 2 & 3 like before. She had labs last night & needed a platelet transfusion this morning. As we sat at TCH getting platelets for what feels like the gazillionth time, someone got to ring the bell! They completed treatment and can go on being a “normal” kid again. I had tears of joy for this sweet child and her family. The bell means no more watching your child be sick, in pain, having blood transfusions, port accesses, doses of meds, and not as many- CT scans, MRIs, x-rays, hospital stays, doctor visits... and all the side effects that come with chemo! Im looking to forward ringing that bell with Nora.
Posted by Caitlin
February 13 at 3:38pm
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We have roughly 7 more weeks of chemotherapy, (depending on if Dr Raj adds any rounds since we cut the dosage down) followed with 7 days of radiation. So far she seems to be tolerating this round better. The next 5-6 days are the ‘critical’ ones. We’re getting there- one day at a time. #somuchhope #kickcancersbutt #childhoodcancersucks
Posted by Caitlin
February 13 at 3:38pm
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2/8 update: Round 3, Week 1 of chemo is completed as of Tuesday. We did 1 chemo day instead of 2, cutting the dose in half. We got ‘home’ Tuesday afternoon and Wednesday afternoon went in for a Neulasta shot. It helps rev up her white blood cells since we know they’ll drop with chemotherapy. Since being home she’s seeming to do better this round. She hasn’t vomited at all. She is eating ok- not like I’d like her to but not refusing bottles all together either. She has been a little irritable since getting her shot. But between the chemo & shot they can cause jaw and bone pain. I made sure she wasn’t feverish and gave her a little Tylenol so she’s more comfortable.
Posted by Caitlin
February 8 at 5:49pm
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Since we took a week off chemo she was so happy & “normal” so it’s been more difficult on me putting her through this again. But, it has to happen and we only have 8 weeks of chemotherapy left + 7 days of radiation. Can’t wait to ring some bells here when we are done! Our next visit is Monday. They’ll check her blood counts and if those look good and she’s not having any constipation issues we’ll have our chemo. It’s the “friendliest” chemo if there’s such a thing. We’re basically half way through chemo. Let’s hope the second half goes quick & smooth. 💗
Posted by Caitlin
February 8 at 5:49pm
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It's been a rough month. 1 month ago yesterday, we flew to Houston to seek treatment after our KC Dr. refused to do the Texas regimen. After that first treatment, when Nora's counts were at her lowest that week afterwards, a fever turned into respiratory infection, mucositis, and VOD along with daily blood and platelet transfusions, trouble breathing, scary trips to the ICU, dangerously low blood sugar, and the smiles that we were used to seeing every few minutes from Nora, slowly disappearing for a day or 2 at a time.
Posted by Caitlin
February 5 at 3:35pm
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18 straights days in the hospital later, our resillaint and strong baby girl recovered, and bounced back through all of it, back to her normal and smiley happy self! After that we had a great few days together, just the 3 of us at our Houston apartment. Today was the start of Nora's 3rd round of treatment, and on the way to the hospital, Lindsay got in a car accident, most likely totalling both vehicles. Thankfully nobody was hurt, but the jarring experience of being in an accident with a car hitting you on the driver's side, airbags deploying, in a busy intersection, in a city you aren't familiar with, with your 6 month old daughter in the backseat, can really be defeating among everything else going on that you have been dealing with. And to get that phone call being hundreds of miles away, not being able to help out and comfort physically, is really hard.
Posted by Caitlin
February 5 at 3:35pm
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Many people say "cancer is a roller coaster ride full of ups and downs." But when you are hundreds of miles away from your house and family, it makes you question, was this the right decision? Are these all signs that we should have went with a different treatment plan? Would the same thing have happened closer to home? Honestly, we are still holding strong and true to our decision to be under the care of the speciality Dr's we like and trust, as God guided us in this direction. But we could use a break, guidence, a little clarity, and a sign or 2, that we are still making the best decisions for our baby girl. Thank you for all the continued support, as we have not been able to do this alone. Prayers for clarity and a break in a positive direction, would be very appreciated at this moment in the journey we are on.
Posted by Caitlin
February 5 at 3:35pm
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2/4/19 Nora’s blood counts are high enough that we can start the 3rd round of chemo today. It’s clear her body couldn’t tolerate the big dose she received last round, so they are cutting the dose in half. We are waiting to be admitted to the hospital to start now! I’m so thankful we are only a week behind for treatment. The “side effects” usually don’t start for 7-14 days after treatment. I’m praying she responds to this dose better and we don’t have recurrent mucositis or VOD!!! 🙏🙌💗
Posted by Caitlin
February 4 at 8:53pm
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After 18 days in the hospital... we’re being discharged!!! I’m so grateful!! 🙏🙌😊❤️
Posted by Caitlin
February 4 at 8:52pm
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1/29 UPDATE We are still in the hospital. We are back at PICU now to do a glucose fast. It’s starting any time and will potentially last 8 hours. If Nora can keep her glucose above ‘60’ the entire 8 hours we pass and no more worries with her blood sugar. We test every hour... PRAY PRAY PRAY! 🙏❤️ EDIT: 2:15pm She’s at 65, so can’t start the test yet. She needs to be above 70 to start. 5:45 tested glucose 72 5:50 ate, glucose 61 7:00 glucose 71 8:00 glucose 74 9:00 glucose 73 10:00 glucose 77 11:00 glucose 79 12:00 glucose 71 1:00 glucose 73 2:00 glucose 67 ✔️😊
Posted by Caitlin
February 4 at 8:52pm
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Since the last update: Friday: We met with an endocrinologist about Nora’s glucose levels. We did a medicine with blood testing to check the adrenal gland. Everything came back normal! We did a CT scan of the lungs & abdomen. The lungs are clear. The abdomen showed an area where her kidney use to be that we are assuming is all scar tissue. The oncologist isn’t concerned with it at this time. So at this point the scans are “clear!”
Posted by Caitlin
February 4 at 8:51pm
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We placed a feeding tube and Nora pulled that out within hours. They placed another tube and she vomited that one out of her stomach. We decided to let her rest through the night. She started eating more regularly so we didn’t attempt another feeding tube! Yay Nora! Saturday: fairly uneventful at the hospital, Harry stayed with Nora while Ellie & I visited the Children’s Museum. Ellie had fun playing and running around. We ordered pizza and ate birthday cake. She passed out cake to all the nurses. She loves sharing! Thank you Jan, Arianna & Kyle for getting that worked out for her. You all have been very supportive bringing meals, delivering cake, & visiting! ❤️😊 Harry probably would say it was more eventful- lots of talking with different doctors and specialists. 😉
Posted by Caitlin
February 4 at 8:51pm
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Sunday: Harry & Ellie are back home safely after flying with Angel Flights in small private planes. ✈️ Next Steps: Nora has to be able to build her glucose reserve enough that her blood sugar is stabilized without the IV fluid. This is the last step before we can be discharged. I’m hoping it’s tomorrow but time will tell! 16+ days in the hospital is enough for this Momma! I’m just thankful for this weekend with my family. Nora LOVED having Ellie around. She gave us tons of giggles & smiles this weekend. 🥰
Posted by Caitlin
February 4 at 8:51pm
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We are out of ICU! We got released late last night. We are still in the hospital, just on the regular oncology floor now. Nora is starting to pick up eating more and her blood counts are improving daily. She did have a minor set back today, her glucose levels dropped really low and there was another swarm of doctors checking on her- giving her sugar by mouth and in her IV. I fed her a couple of ounces and she quickly recovered. Whew!
Posted by Caitlin
January 24 at 5:51pm
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They put her back on fluids. It’s a special IV fluid with higher glucose to help her maintain for now. She’s completely off oxygen and antibiotics. We are really trying to go home tomorrow but it’ll likely be Friday. Before we are released we will have a CT scan and an echo cardiogram to ensure everything is going well and there are no new tumors. Ellie is coming to town Friday and I’m SO excited! I haven’t seen her in 3 weeks!!! We are celebrating her 3rd birthday this weekend. I can’t wait to hug her and love on her. 💗 God is so good- thankful for everyone who has been praying for our sweet baby. He has answered our prayers!
Posted by Caitlin
January 24 at 5:51pm
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The power of prayer... Nora is making good progress in our eyes! We have: - switched her oxygen from bubble cpap, to high pressure, to low pressure. - we are working on weaning her off oxygen tomorrow - she has started to eat in small amounts again - her blood counts are starting to recover- this is the big one, once her counts recover her body can start curing the mucositis and VOD. - We have seen some smiles and occasional giggles from her again, that’s reassuring. We were supposed to have our radiation consult today at MD Anderson but she is too fragile to be transported, so we just rescheduled for now.
Posted by Caitlin
January 24 at 5:50pm
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Her chemo regimen will change either with a new drug or a smaller dose of the chemo drug known to cause VOD. We’re just giving her time to rest and recover before we dive into another round of chemo. Radiation will likely be delayed one more round (3 weeks) because it too can cause VOD. If we’re still making good progress we’ll likely be out of ICU tomorrow and back to the regular oncology floor. Also- sweet girl is 6 months old today! Happy 1/2 Birthday Nora Michelle. 💗 Thank you God for hearing our prayers!
Posted by Caitlin
January 24 at 5:50pm
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1/21 UPDATE Yesterday was another hard day. As much as I’m trying to stay positive, it seems like every day gets a little worse instead of a little better. We’ll turn the corner soon. It’s just hard to not feel a little defeated. Nora woke up with an extremely high heart-rate yesterday, eventually we got it down a bit. She started getting red blood cells again to help with the heart-rate and became splotchy, so she had a dose of Benadryl. Not too long after, her breathing became labored & her oxygen levels dropped. We quickly got an x-Ray and next thing you know rapid response was being called. After an assessment, they decided it’s best to get her to ICU. Everyone grabbed all my things and we were rushed off to another tower.
Posted by Caitlin
January 21 at 5:45pm
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She has a bubble cpap machine to help with her oxygen. She has been stable since arriving and getting this support. She’s still experiencing tachycardia so she’ll get an EKG today. She hasn’t ate hardly since Saturday 1/12. The low oxygen could be from the VOD and her liver being extremely enlarged, morphine also lowers respiratory rate so we’re working on getting her off that, or the lasixs medicine (to help get the fluid out) could’ve caused dehydration to the point her blood vessels shrunk. Another possibility is a response from the blood transfusion.
Posted by Caitlin
January 21 at 5:45pm
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It was the most scared I’ve ever been. Harry caught a quick flight out and he’s with us now. I’m hoping to get better news today, with both the VOD condition... everyone keeps saying it just takes time... and also the respiratory condition. I’m so ready to have my happy, grabby, wiggly baby back. We need prayers now more than ever.
Posted by Caitlin
January 21 at 5:44pm
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1/19 UPDATE Oh sweet Nora... we’ve been hospitalized a week at the end of today. I’ve been saying she’s puffy but the nurses always answer- “it’s just because of the fluids.” Yesterday I couldn’t take it anymore, I requested the doctor come see Nora because I felt like she was still so puffy from the waist down. And I am SO glad I did. They requested an ultrasound just to be sure everything was ok. It showed she had fluid buildup in her abdomen. The doctor then requested a more intense ultrasound of the liver. Here is what we’ve found: The high dose of chemotherapy caused Nora to develop a moderate case of VOD, a restriction of the output of the liver, causing fluid to build up in her abdomen. She’s gained over a kg this week!
Posted by Caitlin
January 21 at 5:43pm
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We are reducing the amount of fluid intake and giving a couple of new medicines- one helps her body absorb the fluid and one helps her urinate it out. It will take several days, up to a week for her to be back to “normal.” She’s also getting more red blood cells today... I’ve lost track of how many blood transfusions she’s had. And she still hasn’t ate anything. The mucositis is also a reaction of chemotherapy. But the VOD & mucositis aren’t directly related. I’m not sure how this will change her treatment plan but I’m sure Dr. Raj is thinking of a better plan for Nora since her little body just couldn’t take the high dose of one of the chemo drugs. On the positive side: her kidney function is great! Her platelets are good today! And I’m thinking those CT scans next week will be a little less scary since we haven’t seen “anything” by ultrasound or X-ray yesterday! I’m praying hard for my sweet baby Nora! Keep fighting little girl.
Posted by Caitlin
January 21 at 5:43pm
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1/17 UPDATE We may finally have an answer! The doctors are now thinking Nora has mucositis. It’s a very painful inflammation & ulceration of the mouth, throat, and digestive track, in response to chemotherapy. Do yourself a favor and not google that. Really scary! We had yet ANOTHER platelet transfusion this morning. Her other counts are low but stable. So only platelets were needed. Today’s goal is to manage her pain. We are putting Nora on a pain pump with a continuous low dose of morphine. We’re hoping with this she’ll make improvements to eat and get off the TPN machine. Mucositis is rough- Although it’s not a virus, there’s no medicine to cure it, when her body has better blood counts she’ll be able to fight this off. We should be seeing improvements soon as the low counts from chemotherapy should be over and the counts should start to climb again!
Posted by Caitlin
January 17 at 5:14pm
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On top of mucositis we’re dealing with some skin/wound issues. The back of her head has some pressure irritation, her port sight has skin breakdown from adhesive allergies, and she has the start of a fungal diaper rash (from running fevers). Lots of interventions taking place for all that. Prayers are really needed for this sweet girl- she is still so miserable.
Posted by Caitlin
January 17 at 5:13pm
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Quick update: Nora had another platelet transfusion today. She’s slept all day and is very irritable when she’s awake. She hasn’t spiked a fever today! In between sleeps she’s had about 3oz to eat. They’ve started her on nutrients and lipids through her IV instead of regular fluids. The nutritionist requested a feeding tube be placed but because her platelets are low, the doctors did the IV way instead. I’m assuming when her blood counts are better and stable that she’ll need a feeding tube placed as she isn’t getting the calories she needs and was on the small side before the diagnosis. Doctors have said we can anticipate another 48 hours in the hospital. They expect she’ll keep making small improvements. So it’s one day at a time. Well... That sums up our day. No huge changes, but hopefully getting better by the hour.💗
Posted by Caitlin
January 17 at 2:38am
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ER UPDATE Nora is still sick. She hasn’t ate much at all. Maybe an ounce a day since we’ve been here. She’s pretty junky as well. She’s also puffy from the IV fluids. She’s had multiple platelet and red blood cell transfusions- her counts go up initially but then they come back down. This isn’t related to chemo but most likely an infection. We don’t have a clear answer for what type of virus/infection she has. As far as the blood counts dropping, we’re hoping it’s all related to the virus, we do know she isn’t passing blood in her urine or stools- all good things. She is getting more red blood cells today, rest for labs, and chemo after infuse red blood cells. I’m hoping she can start making big progress to feeling better soon. She’s miserable and her Momma is miserable watching it all. She’s a tough little baby, I even got a smile last night. I know she’s got this.
Posted by Caitlin
January 15 at 9:48pm
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Another ER Visit Saturday night into Sunday Nora started refusing bottles, her wet diapers stopped, and she was either super agitated or sleeping. We could tell she just didn’t feel well. She has been pretty happy even though she’s had a cough/phlegm. Her temperature never reached 100.3 (99.8 was the highest at home) but we called anyway just based on everything else. We were instructed to head to the ER. They did labs and all her counts were low, some critically low. Her white blood cell count was 0. We got another platelet transfusion and a blood transfusion. She still hasn’t ate much at all since Saturday. She’s had a couple of attempts but she just isn’t interested or vomits. She spiked a couple of true fevers, so we started an antibiotic incase her infection is bacterial. Labs this morning showed low platelet count again so we’re getting our 3rd infusion since Friday. Her hemoglobin was actually lower, despite getting blood yesterday, so she’ll be getting hemoglobin as well.
Posted by Caitlin
January 14 at 5:35pm
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She’s just super sick. Hopefully these blood transfusions will turn things around quickly! 😕🙏
Posted by Caitlin
January 14 at 5:34pm
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Round 2, week 2 update I’m all set up with a furnished patient apartment. The apartment is nice. We’re less than 10min away from the hospital. Harry drove my car all the way to Houston Thursday, it took him about 11-12 hours and he did it in one long stretch! I’m so grateful! And he’s with me for a couple of days- Thank you snow storm! We went in Friday for the small dose of chemo. Harry & I expected to be there about 3 hours... we ended up being there 7 and she didn’t even get to have the chemo! 😱 Nora hadn’t pooped since Sunday... the chemo they give her causes constipation and giving her another dose before she went potty could’ve caused major issues. So no go on the chemo. Her lab work showed very low platelets so we got a dose of platelets... blood products take a LONG time to administer! We got sent home with a new laxative, put her on prune juice, and rescheduled her chemo for Monday.
Posted by Caitlin
January 13 at 11:46pm
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After 3 doses of laxatives and a little prune juice later, things are finally moving! I’ve never been so excited to see poop! And I never thought I’d create a post talking all about it. Friday we also talked to a couple of people about being involved in research studies, talked with a nutritionist, a social worker... and I feel like a million other people. By the time we left, we were both mentally drained by all the information and all of the things we need to keep track of along with changes we need to make for Nora. We bought a white board just to keep track of all the important things they ask us.
Posted by Caitlin
January 13 at 11:46pm
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Her counts are dropping and will be low for the next 4-5 days- meaning she’s at high risk of infection. So we are watching her temperature closely. If it gets to 100.4 we have to go in to be admitted for 48hrs. (Like we did Christmas) We don’t want that to happened again, so we are just hanging out at the apartment and avoiding large crowds! I miss Ellie terribly! It’s been 11 days since I’ve seen her. But she’s having fun with family this weekend and got to play in the snow. It was 65 and sunny yesterday and as silly as it sounds I’m sad to have missed the big snow storm- I love them! The next few weeks will be pretty big for us- CT scans, echo cardiogram, and radiation coming in to play late January. Lots of prayers for continued good news is appreciated!
Posted by Caitlin
January 13 at 11:45pm
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HOUSTON UPDATE: We’ve had the first round of chemo to think about which regimen to choose. After a lot of consideration, we decided to go with experience. The Houston rare tumor specialist has treated Nora’s cancer before and is publishing a new protocol for it. The Kansas City oncologist has never treated it before. After several weeks with her, we have lost confidence and trust that she knew what Nora’s best treatment plan was, nor did we feel like Nora was a priority for her. Nora was supposed to start Round 2 of the Houston treatment Thursday in Kansas City. Our KC oncologist had agreed to follow the Houston doctor’s protocol. But Wednesday evening- the.night.before.treatment she called Harry and said she would not feel comfortable doing the regimen after all. This really put us in a tough spot. Do we just submit to her and use the protocol she’s recommending in order to get Nora in to treatment on time? Or do we go to Houston and be with a specialist who’s treated this before?
Posted by Caitlin
January 5 at 9:34pm
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Lesli Gallagher Lewis — 5 years ago
Lindsay and Travis, my prayers are going up for you and Nora..and Ellie. I know God will see you through all that you are dealing with on a daily/nightly basis. Continued prayers and hugs.
Harry, Nora, and I flew in to Houston last night- (Thanks Eichman family!) We met with Dr. Raj this morning and after talking a few things over with him we’ve decided the most realistic and best choice for Nora is if I stay in Houston with her for the duration of her treatment. So the next 12+ weeks Nora will have some sort of chemo weekly. The most intense portion being every 3 weeks. She will also be having radiation at MD Anderson in 3 weeks, after the next round of chemo is finished. Harry and/or Ellie will be traveling back and forth several times to visit. We are waiting to be admitted tonight, hopefully before the pharmacy closes at 7 so we can get day 1 of chemo tonight and day 2 tomorrow. 🙏🤞 Many more updates to follow. ❤️
Posted by Caitlin
January 5 at 9:33pm
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Quick Update: YA’LL!!! We got a Christmas miracle today- and it’s thanks to everyone’s prayers! Nora had a CT scan of her lung today- the small lung nodule is GONE!!!!!! 🙌 This doesn’t paint a clear picture as far as what the nodule was, it could’ve been a small cancer spot that cleared up with 2 weeks of treatment or it could’ve been a benign nodule that went away on its own. Either way- good news to me! We haven’t talked to the oncologist today- so we haven’t talked about how this may change her radiation portion of treatment. All I know is I am filled with so much happiness & hope! Nora’s temperature has stayed normal throughout the rest of yesterday & today. Her oxygen levels are low when she sleeps so she’s still wearing her oxygen and they’ll keep her tonight to continue monitoring her. But, we should be going home tomorrow morning. We also got week 3 of chemo tonight- which means Round 1 of chemo is finished! All things considered, we’re having a pretty great day!
Posted by Caitlin
December 28 at 4:45pm
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Shannon Rush — 5 years ago
That is such wonderful news! Prayers that the news just gets better and better from here on out and prayers to you all for continued strength on this journey you are on. God bless and Happy New Year.
Christmas Update (from the hospital): Nora had a rough day yesterday. Runny nose, coughing, lethargic... just didn’t feel well. Since around 3pm yesterday she has been unable to keep her bottles down and around 4:40am this morning she spiked a 102.4 fever. We’re supposed to call the oncologist at 101.3! I had a slight wave of panic and notified the hospital. While I was waiting for a call back, I brushed my teeth, loaded her and the diaper bag up, and started driving downtown. We arrived at Children’s Mercy ER and got labs going, took a chest X-ray, started fluids and a medicine to fight a bacterial infection (as a precaution). So far we’ve learned she doesn’t have pneumonia or the flu. We still aren’t sure what’s going on exactly until we get labs back, which takes 48hrs. As of now she still has a fever and her heart rate is high. We’ve been admitted to the oncology floor and will be here at least 48hrs. We’re bummed to not wake up with Ellie on Christmas :(
Posted by Caitlin
December 28 at 4:44pm
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Texas Children's / Week 2 Update Wednesday, we did our day trip from KC to Houston & back. It was very nice to meet the Doctor and hear his prospective on treatment. We also met with an awesome surgeon while we were there, should we need one regarding the tiny lung mass (we don’t really know what the lung nodule is yet, but with this type of cancer our oncologist is considering it disease). And, it just so happened that another patient was there that had just finished chemo for the same type of tumor (his was in his neck) and we got to talk to his Mom. It was nice to talk to another parent who has been on this journey. Sometimes talking to Doctors is hard since they’re emotionally removed and somewhat desensitized from working in the field.
Posted by Caitlin
December 21 at 9:24pm
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Texas Children's / Week 2 Update Continued 1 Surprisingly, the specialist at Texas Children’s uses a shorter, although more intense regimen; 5 rounds, 15 weeks with no bone marrow transplant, but overall less toxic and less side effects. Our Children’s Mercy oncologist recommended a 10 round, 30-week regimen with 1-2 bone marrow transplants. And when she reached out to colleagues for other recommendations, St. Jude’s responded and recommended a 9 round, 25-week regimen with a possible bone marrow transplant. No matter what we chose, we were told that the prognosis is the same (which we still are not wanting to know numbers & statistics). This type of cancer has the propensity to come back after chemo is done, but were also made aware of 1 clinical trial Nora could qualify for if for some reason it does come back.
Posted by Caitlin
December 21 at 9:24pm
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Texas Children's / Week 2 Update 1.5 For now, we are considering combining the treatment regimens; upping the dose of chemo from the Houston specialist, but doing more rounds & adding different chemo medications to the treatment as well, so we can attack the cancer cells from all angles. But when speaking to the Houston specialist about this, he did not recommend this. If we were to mix and match, we would not be following any specific protocol, meaning there could be too much toxicity, unexpected side effects could arise, and we would be doing treatment never tested before.
Posted by Caitlin
December 21 at 9:23pm
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Texas Children's / Week 2 Update Continued 2 Yesterday, Nora received her second chemo treatment. She was a little nauseous this morning, but otherwise is responding well and still in a great mood. What we need now: Specific prayers - clarity for Lindsay & I to make these decisions for Nora (we have about 2 weeks to decide) - for Nora to tolerate & respond to chemo - for the cancer cells to BE ELIMINATED & no spreading - for Ellie to not feel too disheveled during all of this Thank you for the continued support & prayers. If we haven’t responded to your comments, just know that we read them, we love them, we hang on to them when we are feeling down, and we appreciate them.
Posted by Caitlin
December 21 at 9:22pm
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Week 1 chemo update: Nora had her first week of chemo. She had 3 different kinds of chemo and a couple of medicines to protect her heart, bladder, and help avoid nausea and vomiting. She’s had no side effects so far! We’ve been told babies respond pretty well and usually don’t get the nausea/vomiting symptom as much. We got discharged this morning. Ellie is reunited with us and we are all resting up. ❤️
Posted by Caitlin
December 21 at 9:14pm
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The next steps: Monday: Nora goes back to CM for labs and a shot. (Outpatient) Wednesday: Harry, Nora, and I are heading to Houston to meet with the rare tumor specialist that by some miracle our family found and put us in connection with. It’ll be a long, one day trip- but we’re ready to meet him and hear his ideas! Thursday: Week 2 of chemo. (Outpatient) The next 2 weeks of chemo will be outpatient. We won’t need to be admitted until after the first of the year. Chemo day will be Thursday’s. But of course- I’ve learned things ALWAYS change. 😉 And because I’m a hairstylist I had to ask- when will “Nora lose her hair?” We can expect her to lose it all in a months time. Our oncologist thinks she’ll keep her eyelashes. I know these things aren’t important- but I mean- have you seen my girls’s eyelashes?! What IS important is Nora seems to be her normal self- happy, smiling, laughing, and eating well! And we’ll all be together for Christmas and New Year’s.
Posted by Caitlin
December 21 at 9:14pm
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It’s time to kick some cancer booty! Today is week 1, day 1 of chemotherapy. And while I REALLY REALLY don’t want to be here, I’m ready to heal my baby girl! Yesterday was a big day- we arrived at CM for her port placement. It was a rough start... we were sent to the wrong place and waited 30 minutes. 🤦♀️ Got to the right place... started drawing labs before her procedure... and sweet girl had to be poked 5 times. They even used an ultrasound machine and just couldn’t get it set. It was rough. Finally after they did, she went through the procedure of getting her port & everything went fine. We were admitted on 4 Henson and she was monitored. We did an echo cardiogram to get a baseline for her heart. We had the chemo talk 😖
Posted by Caitlin
December 21 at 9:13pm
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Day 1 Continued: We also decided to do a brain CT scan to ensure no cancer had spread. We attempted 2 times, Nora wasn’t having it the first time. The second attempt there was a clot by the port and we couldn’t get the contrast through. We came back to the room, got a special med to break up the clot, waited for it to work & waited for Nora to fall asleep again. Finally got her through this quick scan. She needed to hold my hand. ☺️ Nora’s platelet count is high which is what caused the clot and I’m assuming that’s also why we had a heck of a time getting labs that morning. We were originally told we’d be here 5 nights. If all goes well today, we’ll be heading home tomorrow! 🙏 We are still figuring out details on getting to Houston between appointments next week. Luckily both oncologists (the one here at CM and a rare tumor specialist in TX) are willing to collaborate together to treat baby Nora! We are feeling better to be getting this ball rolling & to have a tentative plan.
Posted by Caitlin
December 21 at 9:13pm
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Treatment Update #1: After reaching out to MANY different hospitals, we have decided to start care at Children's Mercy. It seems that the protocol to treat Nora's condition is very similar across all of the top children's hospitals. Thursday morning, Nora will undergo another surgery to put in a port that will be used to administer the chemo. After her procedure, we will talk with our oncologist about the treatment plan for Nora, as well as all side effects of the medications, etc. Friday we will do the first round of treatment - which is a combination of chemo and radiation. We will be in the hospital from approximately Thursday-Tuesday in order to monitor Nora and see how she responds to the treatment.
Posted by Caitlin
December 21 at 9:12pm
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Treatment Update #1 Continued: Once being sent home, we will likely go to Houston, to visit Texas Children's Hospital to meet with another oncologist that specializes in rare solid tumors. We'd like his 2nd opinion on the treatment plan and to see if there are any other options for Nora. We'd like to start treatment as soon as possible, and while it would be ideal to have his expertise before we begin, he's out of the country, and couldn't get us in until mid-next week. We CAN however modify the treatment plan as needed moving forward. He will also be making time however to speak with our oncologist in the next few days to share ideas on the best treatment options for Nora. Thanks again for all the prayers, love, and support.
Posted by Caitlin
December 21 at 9:12pm
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BIOPSY RESULTS: Before we heard the results from Nora's diagnosis today, we asked to not hear numbers/statistics associated with it, in regards to prognosis. Therefore, we do not want to read anything associated with that in comments or posts, as this group is designed to give Lindsay and I a single place to update friends and family all at once, only asking for prayers and positivity. With that said, Nora's tumor came back as a malignant rhabdoid stage 3 tumor of the kidney. This is very rare, affecting 1 in 2,000,000. Trearment will include a combination of surgery, extensive and intense chemotherapy, and/or radiation, with a bone marrow transplant over 40 weeks. We will be looking at getting some sort of port that will deliver the chemotherapy this week, with treatment starting in the next few weeks. We have forwarded these results to St. Judes for a second opinion, exploring all other treatment options, but plan to act quickly and start treatment at Children's Mercy.
Posted by Caitlin
December 21 at 9:11pm
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BIOPSY UPDATE: We got a call from Children’s Mercy today. Unfortunately, it’s not the news we were hoping for. Nora’s biopsies did come back cancerous and further treatment is needed. They did not tell us what kind of cancer it is yet, but she did confirm that it is NOT Wilms. We will be meeting tomorrow afternoon to find out the details and a treatment plan. As always, we thank you for the continued prayers. We’ll have another update tomorrow night.
Posted by Caitlin
December 21 at 9:11pm
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Guess who got to go home tonight?!? Nora girl has done so well- they let us go home! ❤️ The surgery team and nurses all agreed- Nora has done exceptionally well and her recovery has progressed quickly! They weren’t doing anything we couldn’t do ourselves for her at home and agreed that we didn’t need to stay. I truly believe because of all the encouragement, messages, and prayers we’ve received- Nora has done amazing and Harry & I have been a bit more at ease with the whole process. So we thank you all! We’re only missing 1 key thing to put this all behind us: pathology reports. We’re hoping for continued good news! 🙏
Posted by Caitlin
December 21 at 9:10pm
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Post Surgery Update #4: Nora is making great progress today with several big changes. First, she gets to eat again with no restrictions. Second, we got to remove the catheter. And last, we got her off the pain pump, switching to oral pain medicine, which she hasn't even needed! She's on Tylenol only! And no more plugs, cords, and monitors!!! When we removed the catheter, the nurse warned us that she'd cry, but Nora didn't blink. The nurse said, "Well when we take this sticker off her leg she'll cry for sure." Again, Nora proved her wrong. We have a tough girl on our hands! From the sounds of it, Nora is meeting all milestones and should be sent home tomorrow morning. We have no update on the pathology report yet. Thanks again for so much love sent our way.
Posted by Caitlin
December 21 at 9:10pm
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Post Surgery Update #3: Nora woke up about 1:00pm on Tuesday and stayed awake for about an hour, eventually smiling and reacting to our voices for the first extended time since her surgery. We cheered a few big stinky farts, since that means her bowels were waking up, and she could soon start feeding after not having anything for about 36 hours. Around 5:30pm while I was holding her, she squirted out more than a fart 💩 and again was met by cheers. Its crazy the things we applaud now, but soon after the Doctor approved an ounce of pedialyte every 4 hours to make sure she could keep it down, before moving to breast milk, and upping the amount. It was very relieving to finally feed our very hungry and thirsty daughter. (Lindsay gave her about 5ml more than an ounce....but don't tell) ;)
Posted by Caitlin
December 21 at 9:10pm
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Post Surgery Update #3 Continued: Nora woke up again about 11:45pm with a rump roar loud enough, I thought for sure the sheets would need changed. Upon checking, she was as dry as could be, which was great relief to the nurse and I. Lindsay woke up for a bit, pumped, and passed back out. I fed Nora another ounce (+ 5ml, cause we like to break the rules) and she passed back out shortly there after. As stressful as the last 48 hours have been, I needed to share a little behind the scenes humor with the world. We are so appreciative of all the comments, prayers, and generosity that has been rolling in, and we are continuing to stay positive as we wait for biopsy results, and Nora continues to recover. Usually I have Lindsay proofread / approve these before posting, so this could be my last post for a while depending on her reaction later this morning :)
Posted by Caitlin
December 21 at 9:09pm
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Post Surgery Update #2: Following surgery yesterday, often babies need to be in ICU for a few hours before going to a room, but instead they had her waiting at the top of the elevator for us about an hour after her procedure, since she was doing very well! Nora had a tough time with pain for about 2-3 hours there after, grimacing every few minutes or so. But once Lindsay was able to hold her, she was MUCH better and slept for a while. Same thing when I held her for a few hours, she was much more comfortable and stable. They came by last night about every 1-2 hours to check vitals and monitor pain, and everything has been good so far. One of the side effects of the pain medication is itchiness, so she has a few scratches from itching during the night, but they have adjusted medications this morning, and she is more comfortable now. Today we are waiting for her bowels to wake up, so we can give her fluids, and we are continuing to monitor her closely. Thank you so much for everything!
Posted by Caitlin
December 21 at 8:47pm
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Just a quick message to say thank you for the continued support and prayers. It truly means the world to us. ❤️ Our brave girl before & after surgery.
Posted by Caitlin
December 21 at 8:46pm
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Post Surgery Update #1: After about a 3.5 hour procedure, surgeons were able to remove the tumor and kidney as expected. She did fine through anesthesia, but did need a blood transfusion, as her numbers were low going into the surgery, which is typical with a 4 month old baby. Much more details to follow, managing her pain right now and need to stay focused with helping her.
Posted by Caitlin
December 21 at 8:45pm
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Surgery Update: We will be headed to Children's Mercy tomorrow morning about 5:45am to prep for Nora's 8:00am surgery. Doctors said it should last about 3-4 hours, so we will do our best to have an update probably by early afternoon. Thank you so much for all the overwhelming responses, messages, and prayers during this time, we love you all and appreciate everything.
Posted by Caitlin
December 21 at 8:44pm
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184 Supporters
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- Anonymous5 years ago
- Nancy Zielke & John Holton5 years ago In memory of Baby Nora. Our prayers and warmest thoughts continue for Lindsey, Harry, Ellie and the Travis & Deason families. May our Lord comfort you during these difficult times.
- Lee D Kahler5 years ago Hope every little bit helps.
- Corbin Reagan5 years ago
- Anonymous5 years ago
- Kaitlin Clark5 years ago Love and prayers from the Clark family
- Anonymous5 years ago
- Corby kessler5 years ago God bless
- Carol Owen5 years ago I am so sorry for your loss Nora was a beautiful baby and God must have needed her to take her so soon. So so sorry
- Carol E Owen5 years ago I am so sorry for your loss. Nora was a beautiful baby that God must have needed to have taken her so soon. So sorry
- Show 174 more supporters
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