Eevie is VERY restless and fussy. Probably from stomach pain or agitation from steroids. However, she continues to recover and has not had a fever or vomiting. Feel better soon eevie!!
Eevie is slowly beginning to recover. She has not had a fever in about 20 hours. Whew! However...she threw up so hard she threw up her feeding tube. The nurse had to place a new one today. It looks like Eevie will continue to be hospitalized for a few days.
Eevie had an awful night! Fever went up and throwing up and diarrhea constantly. I'm holding her now and she's finally in a deep sleep. No fever for 8 hrs now. Hopefully through the worst. Looks like it's neutropenic fever from the chemo and not an infection. Continuing to covet your thoughts and prayers! Thank you!
Spent the afternoon at Wesley with Eevie...she finally slept for a few hours...woke up happy but had diarrhea and 20 minutes later started vomiting again! Poor Eevie! Feel better precious girl!!!
Full update: Eevie has spiked a fever and it is going up and up. Mommie is getting nervous. Eevie is now inpatient once again. She has been vomiting and is very lethargic. Her counts are near zero. Infections are very dangerous at this point in her treatment. Please stay strong and recover eevs!
Fever and vomiting...every illness is serious when the immune system is compromised, especially for an infant. Please keep Eevie in your healing thoughts and prayers.
Eevie had spiked a fever and is being admitted to Wesley hospital. Will update more soon.
Eevie has been working with her OT/PT therapist today. She is sitting up much better and has enjoyed sucking on pretzels! She continues to receive meds to make her bone marrow recover more quickly as well as her experimental chemo and anti nausea meds. Roar on Eevie!!
Today eevie received both blood and platelets at the hospital today. The blood has given her a small boost of energy. She continues to be sore from the GCSF (medication that stimulates her bone marrow) and is still somewhat nauseated from the experimental chemo. Here she is taking a bath with her new rubber ducky!
Side effects of this round of chemo are starting to show their ugly faces...eevie has been restless and has been vomiting frequently. She is starting to feel achy. However, she continues to talk a lot and occasionally rolls around on her favorite play mat.
Eevie's just chillin'...watching Mickey Mouse Clubhouse...chemos been making her feel icky but Micky helps distract from the bad feelings! Love you Eevie!!!
Eevie is doing well so far at home. She has had trouble with vomiting but has been taking the edge off with high dose anti nauseas and Popsicles! She has been babbling and making some crawling motions. Keep strong eevs!! Mommy's missing her friend Anna's bridal shower but Eeves is wishing you well today too Anna!!!
Eevie's home from KC. She has a rash on her face likely from chemo and is throwing up quite a bit but is doing well considering:)). Here she is on her way to see the dr. She's in her plastic bubble to protect her from germs!
Eevie has been very nauseous from chemo...throwing up frequently. Here she is watching the music video for Eye of the Tiger for inspiration! We love you Eevie! You can do this!!!
Eevie just began her next round of high dose chemo. She receives four doses and an injection. This med can make her have high fevers and rashes. Eevie must also receive eye drops to prevent the chemo from burning her eyes. Stay strong eevie!!!!
Happy 9 month birthday Eevie! Look at you...sitting up all by yourself!
Eevie is making lots of progress with her physical therapy and sat up on her own a lot today!! Mommie is so proud of her! She also licked a ranch potato chip and liked it:) still on for chemo on Tuesday.
Eevie went to her oncologist today. Her counts are still looking ready for chemo on Tuesday. Eevies central line in her chest would not draw but her doctor fixed it. Keep on keepin on eevs!!
Eevie is doing great! She's almost ready for the next round of heavy duty chemo! Looks like the family will return to kc onTuesday for the next round. She also passed her hearing test with flying colors! Here she is playing with some of her favorite toys!
Eevies counts looked good today. She may be ready for high dose chemo on Thursday. If her counts aren't ready Thursday, she will go for treatment on Tuesday next week. Roar on eevs!!
Tomorrow Eevie goes to her local oncologist to see if her counts are ready for her next round of intensive chemotherapy. If she is ready...the family heads to KC for a very high dose treatment.
It's taco night at the Mulloy's so here's Eevie in her taco shirt!
Eevie's having a happy healthy week just continuing to gain strength after her illness last week. Here she is all decked out in summer pink!
I got to play with Eevie today! She was all smiles and laughter! Here she is in her high chair laughing at mommy and just looking beautiful!!!
Eevie's all tuckered out after visiting grandmama and papa Jon's this afternoon! She played and enjoyed being with her great grandparents today!
Eevie's counts are rising again after her heavy chemo...go Eevie go! Here she is with Gammy at the drs office!
Despite pulling out her feeding tube in the night and not sleeping....Eevie's doing much better today and is heading home! Hopefully the family can finally REST!
Eevie is still very sick with vomiting diarrhea and fever. Drs aren't sure yet what it is. Brynne Ryan and Gammy have not had much sleep for three days now. Please pray for all four of them! Thank you!
Eevie is still at Wesley hospital and will likely be there a few days. Fever of 102.5 and vomiting. She's on antibiotics and we're waiting on blood cultures.
Eevie was taken to Wesley Hospital today as she has petechiae (bleeding into her skin) which is a side effect of her last chemo treatment. Her blood is unable to clot properly and they must give her platelets.
Eevie has started to feel some of the effects of chemo and is somewhat agitated and fussy but not too bad! Here she is working on one of her brilliant cures to leukemia...at least the pic looks like it!
Eevie has been nauseated from her experimental chemo. However, she continues to be happy to be home!!
Eevie continues to be all smiles this week! The family is now back home after five full days of chemo in KC. They have been interviewed by Ronald McDonald house charities and are the featured family for the RM Red Shoe Event on Saturday September 13th, 2014 at 7pm at Arrowhead Stadium in KC! So excited for Eevie and her family!!!
Eevie still hasn't gotten sick from chemo this week...fingers crossed it continues! Tomorrow the family has the Ronald McDonald Red Shoe interview. They will represent RM at the Red Shoe event in KC in September.
Eevie continues to do well during her inpatient stay. She has only vomited once and her kidneys are tolerating the chemo. Despite her treatment she has been giggling and smiling. Day 3 of 5 chemo is complete. Roar on Eevs!!!
Today Eevie received her 3rd and 4th dose of chemo. So far, her medication has kept nausea at bay. Mommie and Grammie continue to worry that she will have trouble with vomiting (as she has in the past with these chemos). Her blood pressure and bladder can be affected by these meds. These meds can cause low blood pressure (they have to check it every 15 minutes) and can burn her bladder (she receives a bladder rescue med and diapers are checked for blood and PH level). Despite treatment, Eevie has been laughing and smiling a lot and has giggled at her Mickey Mouse Clubhouse show. Stay strong Eevie!!
Eevie's back in KC for 5 days getting chemo. A hospital stay is even worse after you've gotten to be at home for awhile...sigh! Go Eevie!!! You can do it!!!
Happy 8th month birthday Eevie Elouise!!!
I'm thinking someone is feeling better....
Eevie has been recovering from what doctors believe is a virus. She has been congested and coughing. Mommie and gammie have been at the doctor everyday in the last week and spent the night in the ER and another night in the hospital. Despite her cold, eevie has been smiling a lot and laughs on occasion.
Eevie's mom Brynne has posted in her blog again after a long hiatus. Beautiful take on the 4th of July...
Round 6 Day ?
Independence Day. Always loved it. The hotdogs, the sparklers, the sound of America the Beautiful playing faintly in the background.
About mid-afternoon on the day before the fourth, I sat and watched the kids across the lake from us run around the yard. They were chasing each other around and…as most kids do…were shooting off fireworks a smidgen too close to the house. The whole family plus friends (a total of about 30 people) were grilling out, swimming, and playing volleyball. A picture perfect “country living magazine” type of holiday.
About 30 minutes into my observation, I felt my heart sink. A craving built up inside of me. I realized… I WANTED that. I suddenly wanted “normal” more then ever. I found myself thinking “I can’t put Eevie in the water because of the central line in her chest.” The thoughts kept coming…”I can’t have my extended family over here because Eevie doesn’t have enough white cells.” I thought “I can’t go to the lake house with MY family (a tradition we do every 4th) because a major hospital isn’t close enough.”
I began scanning my surroundings. I thought “everyone over at that house looks so healthy…” I was practically talking to myself…”look at those kids in the pool…look how alive and healthy they are….no tubes…no central lines…no nothing!!” Parents weren’t carrying feeding tube backpacks or administering medications. On their obviously large invitation list…cancer was NOT invited to the party.
A few hours later, the husband and I decided to tootle over to the firework stand to get Eevie some sparklers. My stomach hurt. I started feeling like I’ll never have “normal” ever, ever again. I wanted to cry….maybe I did…I can’t remember. I realized that I had lost my motivation to celebrate. I kept thinking about all the things that I was missing. I went over and over in my head the things that were wrong and what was different about my 4th. I thought about how all of my holiday plans had changed. About how unfair it all was…that I had somehow been cheated. I felt jealous of those people across the lake. I felt angry.
Approximately 10 minutes later, we pulled up to the tent. I sluggishly got out of the car, slammed the door, and let out a half frustrated…half tearful sigh. We walked inside the tent… I saw the sparklers…I smelled the gunpowder…I heard the people asking “can we get a few more punks?” Suddenly…the spirit of the 4th of July HIT ME LIKE A TON OF BRICKS. My heart was racing with excitement. “Oh Ryan!” I exclaimed. “Eevie would LOVE this!” I squealed with delight as I scooped up a giant cone in my hand. “This one is called ‘victory sword,’ she needs it!” I shouted. Before I knew it I was throwing “Eevie themed” fireworks (which she loved by the way) left and right into the cart.
The spirit still hadn’t left me once we climbed back into the car. “Ryan go by Menards!” I exclaimed. “We NEED decorations!” I scampered into Menards and gathered up porch flags and red, white, and blue bows. I decorated our porch. We lit tiki torches. We dressed up Eevie in an outfit most patriotic.
And that evening it donned on me. To the people across from us…we were the people on the other side of the lake. We were having a grand ole time. Sparklers, hotdogs, patriotic music and all. And cancer was NOT invited to the party.
Eevie is being discharged from the hospital today. Fever is gone! Whew! She returns to KC on Tuesday for six days of tests and procedures.
Eevie's sleeping after starting antibiotics. Hospitals keeping her overnight since her temp keeps fluctuating. Not sure what's causing it...virus or bacteria.
Eevie spiked a fever of 101 and has been at the hospital since 2am this morning. Her fever is down now but they've started her on antibiotics. I'll update frequently.
Happy Independence Day From Eevie Elouise!!!
Thank you for your prayers! The blasts are gone...turned into mature healthy white blood cells! Eevie remains in total remission!
Prayer warriors...today 1% blasts showed up in Eevie's blood work. We don't know if this means leukemia is back but are very worried and nervous. She hasn't had blasts since 7 weeks old. Please send prayers and healing thoughts to Eevie. Thank you!
Eevie had a long day at the hospital for a transfusion to boost her immune system. She was happy and didn't cry for six hours straight until she finally got too tired and was ready to go home! Here she is reading a book to pass the time...I can almost here the elevator music in the background as she's nonchalantly reading...
Today Eevie had an appointment with a pediatric gastro specialist. She was very well behaved and played with the doctors lab coat. But for the BIG NEWS.....Eevie rolled over completely for the first time!! Mommie found her on her tummy!!
Eevie has had quite the eventful weekend. She has been hyper and has played with many of her toys. Soon she will start a new chemo compound that has not been tried yet. Eevs will be the first.
Today we had success with more bananas!! Eevie is quite the "do it myself" kiddo...grabbed spoon from Mommie and went at it!! She didn't actually swallow much but she was tolerant of the taste still! Later in the day she pulled out her feeding tube and daddy had to place one for the first time. Whew!!
Today eevie went back to Kansas City for an outpatient appointment. Her counts were too low to begin chemo this week. She has been doing well with her new feeding tube. The new tube is much smaller and more comfortable. This morning eevie swallowed a tiny bit of banana!! Yummy eevie!!
Eevie's counts were low. Spent 9 hours at hospital in Wichita yesterday getting blood. Got new feeding tube. NG rather then NJ. Its smaller and should be more comfortable. She ate some bananas today and liked it. Now she's headed to KC again for a check up. Here she is in her car seat to KC...sticking out her tongue to all of this!!!
Update: Eevie has had a difficult time. Effects of steroids are kicking in and she is quite agitated. She has been receiving medication to help her calm down. This morning, her feeding tube came loose and she has been in lots of discomfort. Nausea and vomiting have been a problem. Get better soon Eevie!!
Eevie had a decent day today. OT came by to work with her and she tried to eat some bananas. Eevie is still opposed to swallowing but seemed ok with the taste. She threw up a couple of times but was able to play quite a bit.
Eevie visited Great Grandmama Lorna today! She smiled a lot and had a wonderful time! Here they are together reading a book.
Today Eevie went to her great grandma Peggy Wood's wake. Eevie was very well behaved and barely fussed. Her great grandmother will be buried in her "Eevie's Roar Team" bracelet as she was one of Eevie's biggest fans.
Today eevie, Mommie, daddy, and Annie went to kc for eevies spinal. Eevie had a great nap on the way up and was very smily at the nurses. However, she screamed during her procedure and was very difficult to hold down. After the spinal, she was covered in sweat and nauseated. Recover fast eevie!
Eevie on her way to KC for chemo treatment....she's holding her Dolly's hand...Give our Eevie strength to continue fighting congenital leuk!! She's still currently the only baby in America fighting this awful disease!
Happy Father's Day to Eevie's daddy, Ryan Mulloy!!! You are a wonderful daddy and Eevie wants you to know she feels lucky you are hers!!!! Here she is in her police hat in honor of her daddy!
Eevie is amazing! Every day for the past week + she has been happy and having fun learning! She is cooing regularly and using her hands to grab what she wants. Here's a pic of her grabbing her foot and another of her heart melting smile! Tuesday it's back to kc for chemo and steroids unfortunately...they always make her feel so bad! We must enjoy every great moment!
Eevie had another great day and is now cooing and trying very hard to communicate! She's def going to be a talker like mommy AND daddy! Aunt Kimmy is babysitting as mommy and daddy are on a date! Here's Aunt Kimmy and Eevie on their fun night!
Our little Jayhawk is 7 months old today! She had labs yesterday and her levels are right where they should be for continuing chemo today. She also has reached a milestone in the research project. Eevie has outlived 21 of 35 babies in the project...unfortunately many have died, but Eevie our life warrior is still fighting!
Eevie has had a wonderful week! She's slept well, been to papa Jon's bday party, and gone to Sedgwick County Zoo! Tomorrow she goes for chemo again.
Eevie is still getting her blood transfusion and chemo in Wichita. It's a long process so she's been there for about 6 hours. She's doing well but this pic breaks my heart.
Correction to the last post...Eevie gets to stay in wichita for her next chemo tomorrow! Yea! No long drive to kc and back!
Eevie finally got to visit her Great Grandmama and Papa Jon's house today after her drs appt! Her levels are good so she'll go to kc tomorrow for more chemo. Papa Jon even played the piano and sang for Eevie! Every day is filled with new wonders!
Papa Jon and Great Grandmama with eevie
Papa Jon playing the puano
Eevie in Great Grandmama's arms
I finally finished Eevie's 6 mos bday present! A video collage to the lullaby I wrote her before she was even born! Happy 6 mos birthday Eevie...a few weeks late!
Eevie In Wonderland
Eevie is cranky but doing well...gets her levels checked tomorrow. So thankful I got to hold her today!
Eevie and Aunt Kimmy
Eevie had a visit from a physical therapist today. She is right on schedule for everything a six month old can do! This girl is amazing! So proud to know her!
Eevie had a good day! She's feeling more like herself...home can make you feel that way❤️
Eevie and Mommy in KC getting outpatient chemo. Will be heading home soon!
Eevie and Mommy
After a crying stint of 24 hrs, mommy daddy and Gammy took Eevie to the ER in Wichita just to be safe. She's constipated and extremely uncomfortable but everything else checked out good! Hopefully she'll get some relief soon...and so will mommy daddy and Gammy...it's off to kc again tomorrow.
Eevie is miserable...very swollen and very agitated...can't really console her right now...she's still at home...no fever or distress...just miserable!
The steroids are taking their toll in Eevie. She's very swollen and uncomfortable...not sleeping well either. She's been very fussy but luckily has just one more dose tomorrow morning.
Eevie's bone marrow aspiration test results are in...STILL IN REMISSION!!! Yea! She's a little fussy from the steroids but had a pretty good night last night.
Eevie and friends
Eevie had another good day. Visited her Wichita Dr and everything continues to look good! Go Eevie!!!
Eevie has slept most of the day after her long KC trip yesterday. She was puking quite a bit on the way home. Started her steroids last night but so far not too restless or agitated. She also started her investigative chemo drug again today.
Eevie went back to KC today to start round 5 of chemo and steroids. She also had a bone marrow aspiration to make sure no blasts are in her system. Will know the results in a few days. On way home to wichita after a hard day...here she is looking stylish in her car seat!
Don't forget to check out Brynne's blog (Eevie's mom) at Lifewarriorsmom.tumblr.com
Eevie update! Saw her Dr in Wichita and her counts are great! White count 4...platelet 90,000...and hemoglobin 4.0!!!! Eevs making platelets!! Good to start chemo:)
Great Grandmama and Eevie!
Correction....Eevie starts round 5 of chemo Tuesday
Eevie took her first stroller ride in the neighborhood this morning. It was a little chilly! Her favorite distraction when cranky from meds is watching Disney movies...but she doesn't have many! Some of you have been asking what you could get her...Disney DVDs! Brynne wants to collect all the classic movies for her so if you want to contribute...she only has Finding Nemo and Beauty and the Beast. Eevie goes for blood work tomorrow and then back to KC on Tuesday for Chemo round 6. She'll be able to come right back home that day though.
Getting ready for a stroller ride
Out and about in the neighborhood
Eevie has enjoyed two days at home! Mommie and gammie have been very busy cleaning her lines and administering meds through her feeding tube. The Mulloys get two more days at home before driving to Kansas City for the start of round 5 of chemo.
Enjoying the outside deck at home!
Eevie had a wonderful night's sleep at home! She slept all night long! She met her new Dr in Wichita and he was very impressed with her. He says she looks great and she is very alert and attentive! Mommy and Daddy and Gammy are so glad to be home too!
Eevie Mommy and Daddy...home at last!!!
Eevie's all decked out in sunglasses and Dorothy's red slippers because there's no place like home!!! Leaving Children's Mercy right now...can't wait for you to be home in wichita Eevie!!!
Eevie says "there's no place like home!"
Eevie and family are scheduled to come home this Thursday!!!! She was feeling better today and all her counts are good. She will go back to KC weekly for outpatient chemo....but this Thursday...mommy daddy and Eevie finally get to go home!!!
Eevie's heartbeat has been erratic today...from 80-200. She is not going home now until next Monday. Hopefully there will be no more issues delaying her much anticipated homecoming. Eevie has never seen the darling pink polka dotted room her daddy painted for her and Brynne has not set foot in her house since Eevie's birth on November 10th.
Eevie has to remain in icu do to breathing issues. She is still requiring high flow O2. She has not been herself lately and seems a little out of it. She has been very fluid overloaded which has likely caused her continued respiratory distress.
Eevie and Mommy on MothersDay
Eevie is staying in PICU...she was overloaded with fluids so now needs Lasix and oxygen. Might have a fever...sigh...please pray it's nothing major and she will recover quickly.
Such a rollercoaster...Eevie is having a reaction to something...not sure what...no fever just uncomfortable rash all over...hopefully just a minor thing
Eevie is doing so great! Breathing on her own, her counts are all good...the doctors think she may be ready to go home as early as the end of next week!!! She will then travel once a week for seven weeks to Children's Mercy for outpatient chemo and then be in patient for a month. She will continue this kind of schedule until she is two. She still has a 17% chance of survival to 2, but look how far she's come already! She's 1/4 of the way there! Happy 6mos bday Eevie! Keep fighting! So excited for you to come home soon! Thank you prayer warriors...praying over our precious Life Warrior!
Eevie has been extubated!!! She is doing well with just a nasal cannula and they're about to remove that because she's breathing so good!
Out of surgery...found her uvula is swollen and made a few small clips but really didn't find any issues. Still a mystery as to why she's had two episodes with her throat closing off and requiring intubation. I'll update when I know more!
Eevie is in surgery right now...please pray the problem in her throat is easily and quickly fixed and for no infection to set in. Thank you...will update again soon...
Had to share Brynnes post from tumblr.com...grab a Kleenex..
Round 4 Days 39......I lost track
Precious Moments. I always hated those dolls. They look so sad. I mean"¦why do people want some pale, porcelain, weeping child hanging out in their china cabinet? Like them or not, at this point I think I could make several Precious Moments dolls of my very own"¦.
There is nothing more raw, genuine, and humble then a mother holding her child's hand while she suffers. I have watched as many mommies and daddys spend time beside their suffering children. I have watched as parents load wheelchairs (complete with sparkling princess or superhero decals) in and out of cars. I have looked as moms stop to show their severely disabled children the player piano in the lobby or the starry ceiling in the entryway. I have laughed as two dads (pretending the oncology floor was a race track) zoomed their sons around the unit (IV's and everything) in large toy cars. One time I saw a sister pull a jacket over her shivering sibling whose muscles were too deteriorated to do it herself. On the surface"¦all sad sightings. But really"¦ precious moments.
Last night, I had one of those moments myself. I was standing over Eevie's bed. Her eyes were watering from the discomfort of the intubation tube. Her heart rate monitor was screeching in my ear. I just stood there looking at her"¦watching her wiggle her little arms"¦.struggling"¦fighting"¦.scared. She looked at me as of to say "why is this happening to me?" I couldn't explain it to her (something I really, really hate).
Though in these situations I can do very little, I do have the power of touch. As she started up at me, I gently placed my hand on her balding head. I rubbed it ever so gently. Eevie just starred at me. I starred back. I looked at her as if to say "I'm here"¦it will be ok"¦and I love you." She looked back at me as if to say "ok mommie."
To the curious onlooker, a mom standing over a hospital bed, rubbing the head of her child with cancer appears very depressing. And it is. It is sad. Onlookers think "oh how awful, I'm glad that's not me!" Trust me"¦I used to be one of them. But maybe we are missing the boat here"¦maybe these sad moments are precious moments. They are raw. They are genuine. They are true. Though heartbreaking and painful"¦they are full of love"¦completely selfless"¦and very precious.
Eevie may need a surgery on her throat. This complicates everything...she is still neutropenic, has leukemia, and on chemo...so three teams are concerned about different issues...hemoc is worried Eevie may still have an infection and surgery will aggravate it...ID is worried that because she is neutropenic she can't fight off infections that she may get from the vulnerability of a surgery...PICU is worried that if she is intubated too long pneumonia will set in.
Brynne and Ryan and Nancy will be at children's mercy indefinitely when they were supposed to be going home now. Not sure what the drs will agree on but will post as soon as I know.
Eevie is doing better today...blood pressure is up and heart rate is down...CO2 is a little high but no temp for over 24 hrs...she is more alert today and no cultures are positive...her white blood cell count went up from .3 to .8. Hopefully she'll be scoped tomorrow and maybe even extubated.
Been waiting for hours for Eevie to wake up from sedation...she finally did...angry and thrashing her arms!! Thank God for her fighting Irish blood! And for your prayers! That's all I know...but for now...it's all I need!
Eevie stopped breathing twice last night so the drs intubated her again...not sure what's wrong...they want to do radiation scans but Brynne and Ryan don't want this as it can damage Eevie's organs...they think she may have an undetected mass or fungus...will update as often as there is new info...thank you for your continued prayers
From Brynne: Gave fluids and huge dose pain meds going give her heliox...heart rate 220 3 hours...I'm about ready to fall on my face no sleep haven't eaten eevs sounds terrible keeping her in picu
Eevie screamed all night in pain...struggling with breathing...rapid heart rate...rushing her at this moment to PICU...need all prayers possible at this very moment.
Eevie is miserable, crying constantly, heart rate 190 and fever of 101. Not sure if this is still from neutropenia or something else. Mommy and daddy are back with Eevie after Brynne's graduation from Roosevelt U in Chicago.
Eevie is still uncomfortable but has no fever and tests have revealed no infection. Her neutrophil count is zero which means she can't fight infections, but was expected after all the chemo. Now we wait to see if she can build back her neutrophils and grow stronger. Go Eevie go!!!
Eevie continues to struggle. Her counts are very low, causing her achy bones and occasional fever. She has been sleeping and crying most of the day. She has needed several doses of pain meds. Hang on Eevs it's almost home time!!
Bath time on oxy
Eevie has a fever of 102...doctors are running tests to see what it could be...Tylenol is working to get it down....but any infection is serious for someone without a healthy immune system. Will keep you posted!
How wonderful! Eevie continues to do well day after day! Today, Eevie drank 7 ml of milk! First time in at least 3 mos since she's had her feeding tube! I'm so thankful Eevie, Brynne, Ryan and Gammy are having some happy, "normal" days!!! Yea!!!
Another good day for Eevie! Here she is all decked out in ladybug red!
Eevie has had another good day. She received blood today but was able to keep her platelets up! She was allowed a stroller ride around the unit.
Since Eevie has been visiting the outdoors at last, Gammy bought her some shades...just call her Elton!!!
Eevie is doing great! She got to go outside again today with Daddy! Someone turn down the sun!:)
Outside with daddy
Eevie continues to amaze us with her strength! Still no severe side effects from chemo...just a little crankiness and discomfort, but overall pretty happy!
Smile of relief to have her last dose of inpatient chemo today! Hopefully she will recover quickly with no infections so she can finally go home for the first time in her precious little life! She still will have a long road of outpatient chemo with a few inpatient stays, but how exciting to go home! Hopefully this will happen within the next 4 weeks!
Smile of relief!
Eevie is enjoying her first Easter! The doctor let mommy, Gammy and Eevie go outdoors for the first time! Tulips and trees are so fascinating!
Eevie looking at her first tree!
Mommy and Eevie and tulips!!
At 5:15 P.M. Eevie started her last round of inpatient chemo. She will have this chemo twice per day for two days plus one injection of a different chemo. This chemo can go into the eyes causing painful conjunctivitis so Eevie must receive burning eye drops every six hours. This chemo also usually causes high fevers so she will be monitored. ROAR ON EEVIE GIRL!!!
Eevie on her mascot again!
To mommie and Grammy's surprise, chemo was delayed another day. The doctor said he wanted to see "what her platelets do" overnight. Hopefully chemo will be on for tomorrow. The floor had to fix the air system today so Eevie had to wear a mask...they didn't have any her size as you can see...
Eevie tried to help hold her mask on
Doctors are giving Eevie one more day to recover before chemo tomorrow! She had been doing well, tolerating feeds and sleeping during the night. Eevie has been playing a lot with mom and dad and really enjoys bouncing on laps and being lifted up in the air! Let's hope she does well with her new chemo!
Is that a smirk?
Eevie gained a few grams last night so at least she stopped losing weight. Her platelets have leveled off so doctors are giving her another day to see if she can grow some herself before starting chemo again.
Eevie in pink bow!
Eevie had another day of smiles and giggles! She enjoyed watching Winnie the Pooh for the first time with mommy!:)
Continues to have morning vomiting (unsure of exactly why). Doctors are concerned about her weight loss (has lost half pound in four days). However, she has been much better and has been smiling and enjoying watching television:) seriously...she loves cartoons.
Eevie watching cartoons!
Happy birthday Ryan...aka daddy!!!
Eevie's a happy girl this morning!!!
Here's a pic of Eevie and daddy sticking out their tongues to cancer!!!
Update Eevie continues to improve! She has been playing more with her family and is able to finally rest without feeling ill. She is no longer going through withdrawal from her pain meds (she had to have heavy addicting medication while intubated). She still has some issues with breathing and must stay on oxygen. Her pulmonary hypertension continues to improve. Docs say Eevie needs one more week to recuperate before her last inpatient chemo.
Eevie sleeping hard on mom
Eevie is ready to leave PICU....it's amazing she's looking so great! Love the headband Margo Kidd Fields!:)
Eevie's feeling better!
Update...Eevie continues to recover from pneumonia, sepsis, and pulmonary hypertension. She has been on a continual upswing but is experiencing symptoms of withdrawal from her pain meds. She has been gagging quite a bit. However, Mommie says Eevie will throw up and then smile! What an amazing little fighter!!
Eevie contemplating all that's happened
Eevie has been ex-tubated! The cardiologist said eevie had "severe" pulmonary hypertension. She has been septic for weeks. Heart still not functioning quite right but slowly improving. Lungs still having some issues.
Eevie is snuggling with sugar bear again! She's slowly improving every day and hopefully will be off the ventilator by Sunday.
Eevie continues to be critical, but is slowly improving. She is being weaned from epinephrine and may be able to receive a small amount of milk from her feeding tube. Her oxygen levels are improving as well. Results from her heart echo showed some improvement, but not total recovery. Eevie has been quite agitated and has received tons of sedatives. She tries to punch when she is messed with by staff. Eevie is quite the little Irish boxer.
Eevie is still stable but recuperating slowly. She does not like having her hands restrained or people messing with her! The drs said they like the babies with fight in them! They recover more quickly! Keep the fire in your spirit, warrior!!
Eevie is still in stable but serious condition. She is still on a ventilator but is breathing some on her own. Heal precious life warrior, keep fighting!
Eevie in picu
Eevie is stable but in serious condition. She is on a ventilator, her blood pressure dropped very low and they gave her epinephrine. The bacterial infection she has is resistant to meds. Lots of prayers healing thoughts and love needed. Thank you!
Eevie has been intubated to help breathing. She tested positive for gram negative bacteria which grew very quickly. She hasn't had fever since 11pm last night and her oxygen level is better. She is surprisingly alert for as many meds she is on and her pain level is better.
Eevie is being transferred to PICU...her breathing is labored and she's on oxygen...crying constantly. I'll update when I have more info.
Eevie continues to do poorly. She is having difficulty breathing and is in a lot of pain. The doctors increased her morphine by another 10%. She spends little time awake and when she is awake she is crying.
Pic of Eevie exhausted from chemo side effects. She is not responding to platelet transfusions anymore. This is a serious issue.
Things have gone from bad to worse. Eevie was up another 24 hours vomiting and screaming. Today she was inconsolable. The doctors decided to put her on a morphine drip for pain control. She is also back on oxygen. It has been extremely difficult for Mommie and gammy to watch eevie suffer.
Eevie had a VERY rough night last night. She threw up for nearly two straight hours. She has been screaming, crying, and gagging persistently. Here she is in one of the many bibs she has gone through in the last 24 hours. Stay strong sweet Eevie girl!!
Eevie is continuing to experience the side effects of her chemo. She tried to play in her gym today but became ill and had to stop. It is very difficult for her to get comfortable. She tosses and turns a lot and needs extra doses of anti nausea meds. Keep fighting Eevie!
Eevie has finished another set of high dose chemos. She continues to be nauseated. She will receive an experimental drug and a drug called G-CSF which will help keep her counts up for many days.
Daddy and Eevie fell asleep after play
Reminder on Brynnes blog! Lifewarriorsmom.tumbler.net
Eevie has been tolerating chemo relatively well the last few days. New anti nausea medications seem to be doing the trick. However, Eevie has been spending a little more time asleep due to the sedative effects. She received platelets this morning (a common transfusion when chemo kicks in and drops her counts). She is currently on day 4 of a 5 day regimen of chemos. One chemo can drop her blood pressure and another can burn her bladder so she is receiving preventative meds and has close monitoring. Despite it all, Mommie and Gammy have been receiving many smiles. What a trooper!
Another rough day of vomiting for Eevie. She is miserable! Please let this part of the treatment be over!
Eevie has been throwing up repeatedly through the past 24 hours...the chemo has made her very sick! Mommy and Gammy are exhausted emotionally and physically as they can do little to comfort her. There was no sleep last night...please pray for a better night!
Eevie has had a rough go of it. She has been very nauseated from her methotrexate. However, her levels are looking good and she was able to clear the chemo out of her system before damage occurred to her kidneys. Go Eevie!
Eevie has finished her 2nd round of round 4! Now she gets to recover for a few days before we start 3 of 4! Aunt Kimmy got to spend the night with Eevie to give mommy and daddy and Gammy a much needed break!
Eevie's doing well...and here's the cutest pic to date!!!
Eevie received platelets and a blood transfusion this morning. Waiting for a chemo drug to flush out of her system before we repeat the treatment on this fourth round. She loves her new Little Einsteins aquarium! Here's a pic!
Eevie continues to be strong as she is in her 4th round. She has been nauseous and throwing up a lot but still managed a smile for her four month bday!
Eevie's Methotrexate level headed in the right direction. Went from 171 to 24 overnight and is now hovering around 2. Looks like she may get cath out tomorrow. She has been irritable and restless as her feeds have been turned off. Sounds like she's like her Aunt Kimmy and gets HANGRY when she's hungry! Here's a pic of her snuggled in a comfy blankie in mommy's arms!
Doctors say Eevie's mexo (chemo) level very high 250...they are worried about damage to other cells in her body so have to push lots of fluids...worried about overloading her again (with fluids) so watching her closely....such a delicate balance every day with her treatment. Extra prayers again please and thank you!
After a lumbar puncture and failed catheter insertion, Eevie still manages to smile for Mommy and Gammy. What a trooper! Started her fourth round of chemo today. Go team Eevie!!!!
Eevie slept all night last night and had a 2 hour nap this morning. She has recovered from croup and it looks like chemo may begin tomorrow. Thank you for your prayers!
Eevie's hanging out with Gammy...still wheezy with croup so might have to have her airway scoped. She still seems to smile through all the obstacles.
Eevie's chemo is postponed because she has croup and is having trouble breathing. She's on an antibiotic that is not compatible with the chemo. Come on Eevie girl! Get over this infection so you can start your last round and come home!
Eevie had a wonderful day yesterday. She took and stroller ride around the hospital and shared a lot of smiles! Today she begins her fourth round of inpatient chemo which is the longest and strongest of the four. If all goes well, she will be able to come home end of April and make weekly visits to CM for outpatient chemo. Keep fighting Eevie and keep praying friends and family!
Eevie's still doing well! Here's a darling pic of her today...I so want to kiss those cheeks!
Fever free for 55 hours and counting! Eevie had another good day! The ct scan and MRI have been cancelled! PT says she's doing great and even a little ahead of the average 3 1/2 mos old! If all continues to go well, she will begin 4th round of chemo on Monday. What a difference a few days has made! So incredibly thankful!
Eevie's been fever free today! She's had a happy play day full of smiles with mommy! She had an X-ray of her lungs and they have a thickening around them...could still be a fungus. She's still throwing up and there was blood in it but doctors think it was from suction. Thank you for continued prayers and positive thoughts of hope! It was a better day!
Eevie's fever is still up. The Drs told Brynne they think she has a fungal infection so they aregoing to do a CT scan. This scan's radiation could cause a tumor in Eevie. Fungal infections take months to heal and her 4th round of chemo would be postponed so the leukemia could return. If it's not fungal it could be her Hickman line, which would have to come out with surgery and Eevie would be under anesthesia which is dangerous for a newborn. Please keep lifting Eevie up in your thoughts and prayers...and Brynne and Ryan and Nancy (Gammy) too. Renewed strength and hope is needed for all!
Eevie's temp is up again to 103 but her cultures remain clear. Hoping they stay clear and her temp goes down soon. She smiled today for the first time in a week!
Eevie's heart is in great shape!:)
Cautiously optimistic...Eevie's temp is slightly down...she slept better last night ...and she's enjoying her binky for the first time in 2 weeks...still not sure about the Hickman line...she had a heart test today and have not heard results yet.
Still running 102.5 temp and very swollen from steroids. Hopefully the 2 antibiotics she's on will kick in. If not, her Hickman will have to be removed and she will have to be put under anesthesia for the surgery. Chemo will be more difficult to administer as well.
Eevie's heart rate is back to normal. Her o2 level is better. She continues to run a fever over 102 and they have started a new antibiotic to fight the staph. If it doesn't work, they will have to take out her Hickman line where the chemo is administered. Hopefully the infection will clear, or this could be a set back of several weeks.
Eevie's temp is still above 102 with Tylenol. Respiration at 90. She received blood and platelets. They have determined she has a staff infection again. This is the 2nd time she has gotten staff while in oncology. She had nothing of the sort in NICU during round two. It is beyond my understanding why the one and only baby currently in the US with congenital leuk whose drs have 3 clinical breakthrough studies about is not permanently in NICU.
Eevie's heart rate is still over 200. Her fever is still 102.5. They have discovered a round purple bacteria in her blood work but haven't identified it. Her oxygen level without the cannula is 86...with it it's 98. She is still horribly swollen and has not been urinating. They finally put her on fluids after an NICU dr came to check on her and told them she needed them. She is still not in NICU. This pic is not pretty but it's how she looks today.
Eevie is swollen and has 102.5 temp. Her heart rate is 225 and they still haven't put her in NICU. Please pray the drs will get some sense. I would hate for negligence to take our Eevie.
Eevie is absolutely miserable...mucusitis has returned with a vengeance and she is swollen from head to toe. Please lift her up especially over the next few days as this 3rd round of chemo and steroids wraps up.
Mommy finally got to see her baby today after having flu since last Monday! Eevie continues to be fitful but her counts are good! Go girl go!
Mommy finally with Eevie again!
Eevie was decked out in Valentines Day attire even though she's feeling crummy on steroids and chemo. Her counts continue to look good! She's a rock star! Keep fighting Eevie! Mommy is still down with the flu...sigh...she misses being with Eevie!
Eevie has started steroids again today so she is very agitated when awake. Mommy is feeling a little better and continues to rest and Gammy is getting a good nights rest tonight. Aunt Kimmy and Eevie are having bonding time! This pic looks like the caterpillar on her binky is attacking her!
Eevie is fine today but Brynne, her mommy, is very sick with fever and is unable to be with Eevie. Gammy can't do it all on her own so I took off 2 days to help. Headed to KC in the morning...can't wait to hold our girl!
Happy 3 month birthday precious Eevie! We are so blessed to have you in our lives! Thank you for such a big smile in Gammys arms!
Eevie and Gammy all smiles!
Eevie took another stroll around the hospital today! It was Gammys bday and Gammy said it's the best one yet because she got to spend it with Eevie!
Stroller ride 2
Eevie had a good day today. She drank more milk and had her first stroller ride yesterday afternoon.
Mommy Daddy and Eevie
What a difference a day makes! Eevie felt better today! She drank 7 ml of milk and enjoyed her swing. The pt visited and said she has strength that some 9 mos olds don't have...she's above average! Here's a beautiful pic of her all in purple!
I wish I had better news to report but Eevie continues to throw up and be very uncomfortable. Here's a pic of her sleeping after hours of crying and nausea.
Eevie is still very agitated and uncomfortable and will only sleep in someone's arms. Mommy Daddy and Gammy are tag teaming it and hopefully will be able to get some sleep too! Round 3 continues...
Look who's feeling better!! Both Eevie and Mommy!!! Pic is worth a thousand words...
Eevie finally got some rest today after three horrible days! Ativan has helped. She has a UT infection from the catheter and is now on antibiotics. She actually spent a little time looking around today instead of crying, as this pic shows.
Eevie is miserable...she is crying most of the time, in inconsolable pain even with oxy and morphine. She is no longer in NICU so her care is not as good...the nurses in Onc aren't used to babies. Brynne, Ryan, and Nancy(gammy) are exhausted. Hopefully Eevie's pain will subside soon! It's torture to have your child be in pain!
Eevie had a rough day today! She had a lot of pain despite morphine and oxy and cried a lot! Her bone marrow aspiration showed that she is still in complete remission! I'm posting a pic of the lab results because reading it is so powerful!!! Go Eevie!
Day 1 round 3...Eevie is passed out after a bone marrow aspiration, lp, and 4 diff chemos. Let's hope she doesn't get mucusitis as bad as round 1!
Eevie had a very stressful day today. She was moved out of NICU to Onc with two hours notice when she starts 3 chemos tomorrow and has to have a bone marrow aspiration. She is finally sleeping peacefully in this pic.
Eevie had a much better day today. The physical therapist came by and said Eevie is actually ahead in her development! Here's a pic of her enjoying her swing!
Get more support by posting frequent update Eevie is having a so-so day. The day started off great! Counts are beginning to come up and no blasts have shown up yet. Eevie smiled all morning at her Nana and Papa! This afternoon, she started vomiting heavily again. Doctors are not quite sure what is causing it. to your page!
Eevie has had a good day! Her counts are beginning to recover and she will likely be ready for round 3 early next week. Eevie has been refusing to nap lately and today has been up 7 hours straight! She doesn't like to miss out on her good days :)
Eevie had a rough day yesterday. She slept most of the day which is unusual for her and when she was awake she was fussy and throwing up. Drs discovered something was wrong with her feeding tube so they replaced it. She's better today and even giggled!
Eevie is officially halfway through inpatient chemo!!! Yea! Here she is playing with her jungle gym, already dressed for Valentine's Day!
Eevie is feeling much better today! Her smile shows it! Mommy has been having fun putting on an Eevie fashion show!
Eevie is slowly recovering from illness. Her temperature has returned to normal and her vomiting has slowed. Doctors were concerned about her breathing and decided to do an echocardiogram. Results were normal! Whew! She continues to receive an experimental drug that is supposed to enhance the effectiveness of the chemo. Let's hope it works!
Eevie's temp is holding at 99 and she hasn't thrown up in several hours. Seems she has kicked whatever this was! Whew! Got to see her for myself today!
Eevie had another rough day with fever and excessive vomiting. The Drs haven't been able to detect whether it's a virus or bacterial infection. It's not been a happy week:(
Exhausted after nausea
Eevie had a rough day yesterday. The experimental chemo has her very nauseated. Brynne's blog is lifewarriorsmom.tumblr.com
Eevie is almost through her second of four rounds. Today is the last day she receives the nausea inducing chemos for round 2! Eevie has gained some weight and is now a whopping 7 pounds! Go Eevie!
Eevie continues to amaze us all with her strength. She enjoyed bottle feeding for the first time in weeks. She is now 7lbs 3oz and all of her counts are good. Unfortunately, the insurance company is refusing to pay for her flight to KC as well as the emergency csection. Ryan continues to fight for their cause, but if they aren't covered the entire amount that has been raised plus another $4,000 will go toward just these two things. Please keep them in mind if you are able to donate! Thank you so much for all of your prayers and support these past two months. You have and continue to make a difference!
Eevie enjoying a bottle!
Eevie and binky
Eevie's having another good day. All her counts are good. Chemo begins at noon so hopefully her anti-nausea medicine will help!
Eevie has had another rough day of chemo. However, the doctors changed her anti-nausea medication and the new one appears to be working better. Eevie has been sleeping a lot with her new meds. Fingers crossed they continue to help her through this rough time.
Eevie had an excellent morning followed by a very rough afternoon. Eevie was given 2 new chemos. They are making her extremely nauseated. She has been gagging and coughing all day. Mommie says "it's absolutely terrible to watch." Eevie has to have these chemos for the next 4 days. Stay strong eevie!
Eevie resting after antinausea medicine
Eevie had a better day today. Mommy read to her and even took her on a little "walk"...around her crib! Eevie really enjoyed the lights on her feeding tube monitor. Please continue to remember Brynne and Ryan and Eevie in your prayers. Ryan stays in wichita 4 days a week to work and is in KC the other 3 days.
Tuckered out after reading time!
Eevie just finished her evaluation with physical therapy. The therapist said that eevie is doing well and and is developmentally on track with normal babies! Eevie tracks well and is physically strong. It is a good thing because she is really going to need strength in weeks to come. As if now, levels are mostly stable. However her pain is increasing and she is receiving multiple doses of oxy. Mouth sores are really bothering her so she cries often. Keep strong eevie!
Worn out after physical therapy!
Eevie has finished her second high dose Methotrexate chemo. Her labs continue to come back in good shape. However, her mouth sores from the chemo are making her fussy. Eevie continues to enjoy her bink, but mommy and daddy believe she will refuse it soon due to mouth pain. Her Foley catheter came out today so mommy and daddy were able to put her in clothes once again!
Eevie continues to amaze us with her strength as she deals with her 2nd round of chemo. She has had some discomfort but seems to find relief in her favorite binky. Here's a pic from this morning. She looks like she's smiling underneath the binky.
Her mommy, Brynne, has started a blog to share her thoughts during this time. Eevie's fight continues to be the most heartbreaking, heartwarming, and life changing experience for all of us, and I'm so glad Brynne is ready to share her daily experiences and feelings. Follow her at Lifewarriorsmom.tumblr.com
Eevie continues to behave nonchalantly like there's nothing to worry about. She is in her eighth day of her second bout of chemo. I wish I could download video to show you how she keeps playing with her binky. You'll have to be satisfied with a pic!
Eevie endured her second lumbar puncture today. She is receiving a special chemo through this procedure that kills any leuk that might be hiding in her spine or brain. She is sleeping soundly and is doing well. This picture was taken two days ago of her precious smile!
Eevie's all smiles!:)
Eevie's vitals are stable today. She is six days into her second round of four chemos. She is in full remission but the aggressive chemo schedule must be maintained in order to keep her in remission. Sores are beginning to form in her mouth again from mucusitis. The goal is to make it through all four rounds of chemo with no infections, and stay in remission. If that happens, Eevie will be able to go home in May with mommy and daddy, and return to CMH for weekly visits.
Mommy singing to Eevie
Ryan and Brynne met with Hem/Onc just a short while ago. They said though things aren't finalized, as far as they can tell everything they said on Friday is wrong! Her blasts were not at 10% but at 2% and not only are there NOT two kinds of cancer but there was no indication of any leukemia cells present. She only has ALL. They typically analyze 200 cells and have so far analyzed 500 and found no genetic or chromosomal abnormalities! They said results are still not finalized and they will know more tomorrow or Wednesday.
As great as this is, this puts us back to 17% survival chance, she still has ALL , but seems to be in remission. Eevie is a fighter and amazing us all...even the doctors!!!
Our little Eevie continues to show her spunk despite chemo and everything! Surprisingly her hemoglobin is above 9 and platelets at 56, her heart rate and aspirations are low, and she's off oxygen and breathing strong! Her methotrexate is high so they've more than doubled her fluids to flush it out, but she's handling it well! As long as Eevie fights this I'm gonna stand with her! Go little tiger! I'm so thankful for you and your strong spirit!!! Miracles can happen!
The bone marrow tests have shown Eevie actually now has two cancers, ALL and AML. Prognosis is not good. 2nd round of chemo starting today with an experimental chemo...will last at least 6 weeks. I'll update more as I receive info. This is a terrible blow to the whole family. I received this necklace as a gift for Christmas and had Eevie's name engraved. No matter what happens, I intend to always wear it. I love you Eevie!
Eevie is done with her procedures and stable. She is on a ventilator hopefully for a short time. This was required with sedation to place the Hickman iv in her chest. Poor little girl has been through a horrible ordeal but continues to show how amazing and strong she is! Won't know results of bone marrow tests till tomorrow. Please keep praying for remission!
Eevie's blast percentage is down again to 4.something%. Her weight is now 6lbs 6oz, and we find out tomorrow if she is in remission...so probably another sleepless night for mommy and daddy. Her platelets have not stabilized on their own but round two of chemo starts tomorrow regardless. Merry Christmas Eevie! Our favorite one yet because you're in our world! Love you!
Merry Christmas Eevie!
Eevie has her Christmas Eve pajamas on and is anxiously awaiting Santa's arrival! Today was a back and forth day. The doctors stated that they could not distinguish whether or not Eevie's blasts were recovery blasts or leukemia. Later in the afternoon, a resident informed Mommie and Daddy that her blasts are looking more like recovery blasts....we will not know for sure until Thursday. Please keep Eevie in your thoughts and prayers this Christmas Eve.
Eevie's ready for Santa!
Eevie's blasts went up today to 7% and she has an infection with 102.5 temp and nausea. She had many tests today but won't know results till tomorrow morning around 10am. Extra Christmas Eve Eve prayers needed and thank you all again for remembering Eevie in your daily prayers. It means so much more than we can say.
Today Mommie and daddy went Christmas shopping for eevie and hung her very 1st stocking :) Today eevies blast percentage came down to 6! Her neutrophils jumped way up and the only thing keeping her from beginning her second round of chemo is her platelets. Come on eevie make those platelets! Tomorrow is another big day. Eevies heart and liver will be checked and her blasts may be checked for normal vs abnormal structure. Fight eevie fight!
Eevie's Christmas stocking
Hemoc came down and Dr said neutrophils ready for treatment! Said they were shocked at the big increase! All we are waiting on now is platelets :))
Tomorrow big big day...gets heart echo to make sure no damage from chemo and remaining blasts get examined for abnormality and she gets tests to c if she in remission or not....please Lord let Eevie be in remission!
Blasts down to 6.2!!! Good sign! Thank you all for continued prayers...keep it up! We have something to rejoice about! I'll post another update when I get more info!
Eevie's blasts doubled from 4.8% to 8.8% overnight. Dr said if they reach 10% it's probably leukemia. Let's hope those cells are normal! Heart rate consistently 160-180 and respiration rate jumping everywhere. She's thrown up twice in 24 hours and temp is at 100...but Dr says everything's fine. Time will tell.
Eevie is having a difficult day...blasts went up again but so far doctors think it is not the leukemia returning. Labs on Monday will tell us more. Eevies is struggling with tachycardia and we don't know the reason. Her respirations are very fast. Mommie and daddy continue to worry without many answers.
Eevie in her new Christmas hat!
Eevie's blasts have gone up 5% and her breathing is still shallow with oxygen. Heart rate is too fast for resting rate...at 200 right now. Chemo is hard on an adult body, let alone a newborn! Extra prayers needed please! Thank you in advance!
Eevie is stable and not much has changed. She needs more neutrophils and her blasts were up today, but hopefully normal blasts and not leukemia cells. She still has shallow breaths at times and her blood pressure and pulse remain higher than normal. Her color is better today and she has been awake a lot...only crying when her diaper needs changing!:). Her weight is down 20 grams but we'll see what it is at the end of the week.
Eevie's labs were good today! Her blasts dropped in half! She'll probably need platelets tonight but hopefully will start making more on her own. Her weight has gone up another 25 grams. She is able to bottle feed every three hours but hasn't really wanted to. Hopefully her appetite will increase soon.
Eevie had another good day today. The doctor said all her counts are going in the right direction, and her breathing remains stable. Go Eevie go! :)
Eevie had another good day! Her breathing is better, WBC count is good, bp normal, diaper rash almost completely gone, and she is very alert! This pic cracks me up since her sugar bear is serving as a visor from the bright lights!
Eevie with her sugar bear sun visor!
Eevie must have gotten some good sleep with her increased pain meds cause she is better this morning:) o2 flow down to 28%, blood pressure high normal, diaper rash better, respiratory rate much lower, heart rate lower. Lungs still not filling completely up but seem more stable. She is 6 lbs now, and has enjoyed her binky again so her mouth sores must be healing.
Santa visited Eevie and we managed to snap a pic! Hope he brought a cure for cancer in his bag! Here's Eevie sleeping soundly as a 'mouth breather' just like Daddy...and speaking of Daddy...here's a picture of Eevie sleeping on Daddy's chest.
Daddy and eevie
Eevie's Mommie and daddy made her a christmas window in her icu suite:) she has her very own Charlie Brown tree! Santa visited eevie this morning and now she has her very first picture with the big man himself. As for her health, eevie is somewhat stable. She is still having difficulties regulating her breathing and has a bad diaper rash and uti. First round of chemo is over. Second round will be postponed until she heals.
Eevie's Charlie Brown Tree
Eevie (and Mommie and daddy) have had a very long 2days. Eevie started having breathing problems and developed 2 infections in her urinary tract. After 2 nights of no sleep for the whole family, eevie was moved to icu again due to breathing issues. Today eevie is more alert and breathing has been stabilized. She played with Mommie for about 45 minutes and did a great job with her cognitive development activities! Overnight she developed a bad diaper rash which is being treated by wound care.
Another rough day for Eevie in oncology. She has a respiratory infection on top of a bacterial infection and is back in NICU. She is alert and breathing well with a cannula but still has a high pulse and extremely low platelets again.
Held by mommy
Happy 1 month birthday precious Eevie Elouise Mulloy! Keep fighting little girl! Today's a better day and Eevie's levels are steady. She has no signs of infection today.
Happy 1 month birthday Eevie!
Eevie had a very rough morning with tests and tubes and chemo. She is exhausted, but finally out of NICU and back in oncology. She's such a trooper! Precious girl!
Eevie is not doing well today. She is refusing to eat, her blood pressure is high, and her weight is down. I will update as soon as I hear the next report. Please pray!
Eevie was down 4 oz but they hardly increased her food intake to 40ml. WBC count is at .28 and everything else is still good. She may need platelets tomorrow. Her blood pressure is consistently 90/60 probably due to steroids.
Eevie had another great day! She ate a lot today and lifted her head up on daddy's chest! She's up to 5lbs 12oz and no longer needs morphine. Hoping to get her over 6 lbs before next round of chemo.
Eevie and daddy
Eevie was moved into her very own crib in icu. She is enjoying her musical mobile! Her Bilirubin down to 5.8 from 7. Doctors are impressed with eevies ability to heal and are moving her from icu in the next week. Eevie is glad to have her breathing machine completely off. Not sure if it's just because of Christmas shopping or what but donations have dropped dramatically this week! Please remember Brynne and Ryan this Christmas as their only income is his salary from police dept. They are responsible for at least 20% of the costs for Eevie's treatment over the next two years which is overwhelming to them. If your church or organization typically chooses a family to help at Christmas, please consider the Mulloy's!
Eevie gained 3 oz last night and no longer needs oxygen. She has been handling her food well so she can now have 20 ml every 3 hours. Blood sugar is good and she's producing WBC's. She needed platelets last night, but other than that, everything is going in the right direction! This pic was taken this morning as she was gazing at daddy!
Eevie loves daddy!
Eevie has had a great 4 days in a row and has now increased her milk intake to 10ml every 3 hours...she is very vocal when her bottle is empty! she's off her cpap but still has highflow oxygen which they hope to take her off by tomorrow night. They will be weaning her off of morphine slowly. Her bilirubin count is still high but with her increased eating and starting ursodiol, should come down. Hoping to get her out of NICU in a day or two and back to oncology. No chemo scheduled for today! Keep praying and please continue to get the word out for support! Thank you so much for continuing to hold Eevie in your hearts and prayers! Here she is cuddling her sugar bear!
Eevie cuddling sugar bear!
Eevie all tuckered out after second bottle feeding. They r letting her have 5ml every three hours now. She sucks it down in a few seconds and gets angry when she figures out its gone! She was alert for mommy and daddy for about an hour and is loving her binky again! Mouth sores are much better. Bilirubin still up so had to skip on dose of chemo. GI ultrasound was normal.
Best day for Eevie of the past two weeks! Eevie was allowed 5 ml from a bottle today! First time she has had real food in a week. The doctors have kept her on tpn due to worries about necrotizing enterocolitis. Eevie has been rooting the last coupe of days and throws a tantrum when she smells mom....really wants milk!! It was so wonderful watching her enjoy her tasty snack! Happy 3 week bday precious one!
Eevie finally drinking milk again!
Great article today in the Wichita Eagle!
Eevie Elouise, now 3 weeks old, was given her name before birth.
By a few hours after her delivery, she had already grown into its meaning.
"The name means "˜life warrior,'" her mother, Brynne Mulloy, said. A photograph of the pink-cheeked newborn showing the IV lines that carry her chemotherapy helped to explain. Snug under a blue hospital blanket, she appeared to rest peacefully.
Just hours after her Nov. 10 birth, doctors diagnosed Wichita infant Eevie Elouise Mulloy with congenital acute lymphoblastic leukemia, a rare childhood blood cancer that affects 1 in every 5 million newborns.
Typical onset of acute lymphoblastic leukemia in children occurs after age 2. In infant cases, the disease is undetectable in utero and is diagnosed within the first few weeks of life.
Brynne Mulloy and Eevie's father, Ryan Mulloy, who married in June 2012, say they expected a life full of quiet family moments and diaper changes at home after Eevie's birth. Cancer was not on their minds.
"It was wham, bam, total shock," Brynne said of their daughter's diagnosis. "It was a very healthy pregnancy. I had several ultrasounds. She (Eevie) passed with flying colors.
"There's no way that we could have possibly known, even with an amnio(centesis)."
The Mulloys said concern over their unborn daughter's reduced movement drew them to the Via Christi Hospital St. Joseph on Nov. 10. She usually kicked and fluttered after lunchtime, Ryan said. But even a shopping excursion for last-minute baby necessities didn't coax an unborn Eevie to move.
After some tests, doctors admitted Brynne to the hospital. Not long after, Eevie was born via emergency cesarean section. And joy replaced worry.
"We'd waited a year and a half for a baby," said Brynne, who recently completed her doctorate of psychology and was set to graduate in December, then look for work.
This year, Ryan had joined the Wichita Police Department. His police academy graduation was Nov. 22.
"She was really healthy and really responsive," Ryan said, recalling his daughter's birth.
His wife added: "Everything was just falling into place."
But then the couple noticed unexplained bruising on their newborn's body, and a test showed her blood sugar levels were low. When a count of Eevie's infection-fighting white blood cells came back nearly 38 times higher than normal "“ a tell-tale sign of leukemia "“ their excitement slipped back to worry.
"They rushed her to neonatal intensive care" at St. Joseph, Ryan said. An hour later, doctors said they were going to fly Eevie to Children's Mercy Hospital in Kansas City, Mo.
"It happened so fast," he said.
At the Missouri children's hospital, Eevie takes four kinds of chemotherapy daily. She's undergone a blood transfusion and receives donor platelets several times a week. Her kidneys failed once. Constant medications make it difficult for her to breath and swallow.
On the eve of Thanksgiving, doctors told the family Eevie's chance of surviving until age 2 was about 20 percent. When she's older, she faces a high risk of developing other cancers and brain tumors.
Treatment costs are expected in the millions.
But the couple say they are thankful.
On Saturday, for the third consecutive day, Eevie was "doing really well," her parents said.
The hospital nurses nicknamed her "Pterodactyl," they added, "because she's strong and cute and dramatic."
"She is really alert," Ryan said. "The last three days have been so much better."
It will be at least five months before doctors release Eevie from the hospital. The Mulloys are looking forward to that day.
"I'd give anything just to wash her dirty pajamas in our washing machine at home," Brynne said.
And to witness a temper tantrum. And mop up messes and spills. And to change dozens of diapers, she said.
"But every day we have her is just one more day with her."
Reach Amy Renee Leiker at 316-268-6644 or firstname.lastname@example.org. Follow her on Twitter: @amyreneeleiker.
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Read more here: http://www.kansas.com/2013/11/30/3151532_wichita-couples-infant-daughter.html#storylink=cpy
The nurses made a sign for Eevie to make her feel more at home! So sweet! Here's a sweet pic of her sleeping soundly with her Colin bear.
Snuggling with teddy
Feeling so blessed to have held my precious Eevie this morning! My arms ache for her! We all wish we could take her pain and discomfort away! Not sure if I shared this before, but Eevie is one of 20 babies worldwide with congenital acute lymphoblastic leukemia! She is the ONLY one in the US at this time. She continues to do well on chemo and her sores in her mouth and throat are slowly healing. Keep fighting little girl! I promise, there are some fun things in life we all want to experience with you!
Eevie and Great Aunt Kimmy
Eevie is sleeping peacefully with her donated teddy and her pink bow. We are so thankful for you precious little one. You are reminding so many of us all of the things we are thankful for that we normally take for granted. Sweet dreams and heal Eevie!
Thankful for eevie
From Ryan: "Eevie's platelets dropped as expected so she got a transfusion...but her blood sugar also dropped from 120 to 29 so she got those meds. Other than that everything is going as well as it can.
We met again with drs and this is pretty much what we took away...
20% at best for survival to 2.
Eevie is at higher risk due to her early onset and high initial WBC.
Even if the leukemia were to stay in remission, which is unlikely, she is at risk of developing another form of leukemia for years after remission.
Kids undergoing this treatment are at risk for developing tumors including brain tumors.
Less intense chemo treatment in older children resulted in learning disabilites and reduced IQ.
I think thats all I care to try to remember at this point."
Please continue to lift up Ryan and Brynne and Eevie in prayer. After hearing the above, today is an especially difficult day.
Eevie Elouise Mulloy, 11/27/13
From Ryan(daddy): Eevie is having another good day...WBC down to .1, platelets around 73,000, bilirubin wasn't a concern because it had been dropping so will reassess on Thursday. We're letting her sleep as much as possible and trying to keep Dr's and nurse's assessments to a minimum.
Precious Eevie in mommy's arms!
Eevie is better today after a spinal tap was clear and no more fever...she still has awful sores in her mouth and throat. After being checked by 30 different md's, do's, np's, rn's, rt's and pharmacists, an lp, four diff chemos, other shots, syringes, bag of meds, etc.....Eevie finally gets to rest with her beautiful mommy!
Ahh rest!!! Finally!
Forgot pic! Here it is!
Eevie is doing a bit better but still in icu cause of breathing and mouth deterioration. Her Bilirubin is down and her last brain ultrasound normal. This pic shows Mommy rocking Eevie to sleep last night.
Eevie is stable in NICU. Her temperature is steady and her breathing is better, she's just having trouble swallowing due to sores in her mouth and throat from the mucusitis...a side effect from chemo. This latest pic sent from Ryan breaks my heart.
Eevie is back in NICU because she was choking and gasping for air early this morning. Her oxygen level was down to 80% and her platelets are down to 20. The doctors think this is just mucusitis and she is currently waiting for a blood transfusion. I'll post her progress as I get the reports through the day. Thank you for your prayers!
Forgot to attach the pic!
Family of 3!
The doctors did another ultrasound on Eevie's organs and everything looks good! Her liver is slightly inflamed and she is holding a temperature of 100"¢ F without Tylenol. She's a fighter! Roar Eevie!!! Here's the latest pic of the precious family of three!
Eevie started a fever in the night...it is now at 104"¢ F this morning. Her bilirubin count is high and her platelets are down to 40...she has sores in her mouth from chemo and can hardly cry she is so hoarse. Today is a crucial day for Eevie and Ryan and Brynne. Please keep them in your thoughts and prayers.
Daddy, mommy, and Eevie are together again!! Eevie has some liver inflammation from chemo so the doctors are keeping a close eye on her. Daddy brought Eevie a huge stuffed tiger to help her ROAR against leukemia!
Eevie has had an eye and brain scan and both are clear...she is perfect in every way except for ALL. Many babies born with ALL have other issues such as Down syndrome or other abnormalities...Eevie does not! This pic shows she's all tuckered out after chemo and cath removal. She's still responding so well to treatment.
Please keep getting the word out to others concerning support for the family. Brynne and Ryan and Eevie will not be leaving KC anytime soon. Luckily, Ryan graduates from Police Academy tomorrow and is able to join Brynne through the holiday season. Cards can be sent to Brynne and Ryan Mulloy c/o children's mercy hospital, Henson oncology 4th floor, 2401 Gillham Rd, Kansas City, MO 64108
Gammy and Eevie!
Eevie is still responding well to chemo and is loving being in mommy's arms as much as possible. I will be in KC tomorrow evening again and my arms ache to hold her! Please keep getting the word out for prayers and financial support. Ryan's insurance is an 80/20 plan, but with estimates as high as 1 million for costs, 20% is overwhelming. Thank you so much for your care and your prayers!
Eevie and mommy
I wrote this to Katy Perry...not sure how to get it to her...maybe if everyone shares it she'll see it!
I don't know if this will ever get to you, but I had to try. My niece, Eevie Elouise Mulloy, was born on Sunday, November 10th 2013 in Wichita, KS with acute lymphoblastic leukemia...only 1 in 5,000,000 babies born have this rare condition that is undetectable until birth. She and her parents, Ryan and Brynne, are fighting for her life at Children's Mercy Hospital in KC, MO. Fittingly, her name (which was chosen long before they realized the significance) means "life warrior." Ryan and Brynne have chosen your empowering song Roar as Eevie's fight song. I have created a video of her pictures to date and put it on youtube at http://youtu.be/Pf2pyEUFSq0
but of course don't have the rights to get it out there. Will you please be an advocate for Eevie? She has started chemotherapy and only time will tell how she responds. Regardless, thank you for your inspiring song that means so much to us in such a tragic time.
Kim Noller (Aunt Kimmy)
A Youtube video has been posted with Eevie's pics to Katy Perry's song, Roar! You can find it at http://youtu.be/Pf2pyEUFSq0
or search tags Eevie Elouise, Roar, Katy Perry, ALL, or Leukemia
Roar Eevie Roar! Love you my little life warrior!
First day of chemo started off great as they were able to catheterize Eevie on the first try. Brynne was very worried about it being painful for Eevie...but she's a warrior! A cath is needed because chemo urine will severely burn skin. Eevie has now had her first dose of chemo...picture is attached.
1st day of chemotherapy
This pic was taken tonight before daddy left for wichita. He won't be there for chemo tomorrow because he has to finish his work to graduate from Police Academy.
Ryan and Brynne have decided that Katy Perry's Roar is Eevie's theme song as our little "life warrior" battles cancer. Lyrics are below:
I used to bite my tongue and hold my breath
Scared to rock the boat and make a mess
So I sat quietly, agreed politely
I guess that I forgot I had a choice
I let you push me past the breaking point
I stood for nothing, so I fell for everything
You held me down, but I got up (hey!)
Already brushing off the dust
You hear my voice, your hear that sound
Like thunder, gonna shake the ground
You held me down, but I got up
Get ready 'cause I had enough
I see it all, I see it now
I got the eye of the tiger, the fire
Dancing through the fire
'Cause I am a champion, and you're gonna hear me roar
Louder, louder than a lion
'Cause I am a champion, and you're gonna hear me roar!
Oh oh oh oh oh oh oh oh
Oh oh oh oh oh oh oh oh
Oh oh oh oh oh oh oh oh
You're gonna hear me roar!
Now I'm floating like a butterfly
Stinging like a bee I earned my stripes
I went from zero, to my own hero
You held me down, but I got up (hey!)
Already brushing off the dust
You hear my voice, your hear that sound
Like thunder, gonna shake the ground
You held me down, but I got up
Get ready 'cause I've had enough
I see it all, I see it now
I got the eye of the tiger, the fire
Dancing through the fire
'Cause I am a champion, and you're gonna hear me roar
Louder, louder than a lion
'Cause I am a champion, and you're gonna hear me roar!
Oh oh oh oh oh oh oh oh
Oh oh oh oh oh oh oh oh
Oh oh oh oh oh oh oh oh
You're gonna hear me roar!
Oh oh oh oh oh oh oh oh
Oh oh oh oh oh oh oh oh
Oh oh oh oh oh oh oh oh
You're gonna hear me roar!
Roar, roar, roar, roar, roar!
Night before chemo
One week old today! Blood levels still good, so chemo starts tomorrow. Here's a pic of Mommy and Eevie. Thank you for your continued prayers.
The odds of a newborn having congenital ALL Leukemia are 1 per 5,000,000 births. So rare...why us? Ryan and Brynne decided on Eevie Elouise's name months ago...meaning of Eevie is "life" and Elouise means "warrior." Wow...our precious little life warrior...in the battle for her own life.
Eevie wide awake! I got to sing the lullaby I wrote for her and then she stayed awake for at least 15 minutes and just gazed up at us while we talked to her!
Eevie wide awake!
Made it to KC! Here's a pic of Nana and Eevie! She hadn't been very happy that daddy had gone back to Wichita, so she saved up a big poopy for 3 days and let it loose on daddy this morning! He was covered in what he said was a mixture of "chocolate pudding and glue!" Took him 20 minutes just to clean them both up! Ha! Now, as you can see, she's sleeping soundly. Blood work is still good and chemo set for Monday.
Brynne got her staples out today and finally got 3 hours of uninterrupted sleep. Eevie's white blood cell count is staying down where it should. We are so thankful she has responded so well to the steroids! I'm heading up to KC tomorrow with my mom so I'll post more tomorrow, with another Eevie pic!
I am speechless...I checked my email this morning and saw all of these contributions from people I don't know, or barely know...and I am so touched I am just typing this with tears in my eyes. Thank you so much to each and every one of you for caring about Eevie Elouise and Brynne and Ryan so much that you would donate to their cause. It's such a humbling experience to be in need and have caring people come to the rescue, one by one. Thank you so much for not letting us do this on our own. Eevie is still stable, doing well. Brynne is exhausted and trying to recuperate from the c-section without sleep...I don't think it's working...:) I'll keep all of you updated day by day. Chemo starts next week. Love to all of you...again...thank you so much!
Eevie is improving...she has been moved from NICU to Oncology so now mother and daughter can stay in the same room! Ryan has insurance through the police dept but we don't yet know what's covered and what's not. Many things such as Ryan's trips back and forth and some of the new treatments might not be covered...this is such a chronic and serious condition with a long road of care...that's why I've created this site of financial support. Thank you so much for continuing to lift them up in prayer! Every prayer and every dollar makes a difference. We love you dear friends!
Prayers and medicines are working! Eevie's white blood cell count is now in normal range of 6000 after steroid treatments. These cost $10,000 per dose and she will get one weekly. She is fighting back...we've all seen the temper she has when she doesn't get her way!:). Ryan and Brynne have decided Katie Perry's song Roar is Eevie's theme song! Go Eevie go...roar Eevie roar!