Ellie Jane's Journey

Hey guys!
The quick update is that Eliie Jane is doing great!
Now for what we need your help with....
Many of you are probably aware that several of Ellie Jane's friends and family are supporting her dad, Justin in the Leukemia Lymphoma Society's Visionary of the Year Campaign as part of Team Constructing a Cure. As part of our fundraising efforts we have put together a Masters' package to raffle off. Tickets are $5 each and can be purchased through Cashapp, Venmo, PayPal, Zelle, or message us here for other options. Please note raffle or LLS when you send payments. We will post the winner here on May 12th, please purchase your tickets by May 11th. Also, because we have seen scammers on other giveaways...we will not announce the winner early, the drawing will be done on this page, we will not ask you for personal information or to follow any links. Please share this post and help us spread the word. Thanks in advance for all the support.

~Team Constructing a Cure

Ellie has been getting monthly labs and port flushes since finishing chemo. Her body has been steadily replenishing itself and everything is looking good so we got the official go ahead to move forward with port removal soon!

On another note, we have been through so much these past few years and want to help other families facing cancer now. Ellie's family is participating in the 2024 Leukemia & Lymphoma Society's Visionaries of the Year campaign to fundraiser for cancer research, advocacy, and Patient support. You have have been such a support to us over these past few years. Help us pay it forward and support others!

Kristen's Visionaries of the Year Fundraiser Our vision is a world without blood cancers. Please support The Leukemia & Lymphoma Society (LLS) by making a donation to Visionaries of the Year! Every dollar raised on behalf of a candidate or campaign team member counts as one vote. The candidate whose team tallies the most votes by the end of th

Today I'm thankful for our FIRST DAY OFF TREATMENT! That's right... after almost 2 1/2 years aka a third of her entire life... Ellie is done with cancer treatment!! We will still be followed closely by oncology including monthly labs for a year and then more spaced out but wow, what a Thanksgiving! Celebrating by casting some spells at Universal Orlando Resort.

Good news! Ellie is back home! Counts aren't back up yet but since flu symptoms are stable her team felt like she could make new cells at home just as easy as she could in the hospital. Taking Tamiflu and antibiotics just to be on the safe side while her immunity recovers. Had to cancel a few days of Disney but looks like we will make it to cheer competition later in the week! Kicked off a family evening with popcorn and Home Alone!

We are SO CLOSE to the end of treatment and it had to throw us for one more loop at the last minute. All of Ellie's counts have bottomed out (white cells, red cells, platelets) and she has the flu with a fever of 104. She got admitted to CHOG and just finished her platelet transfusion, now starting her blood transfusion. Hope we can kick this fast because we planned to go to Orlando next week for some family time and Ellie's cheer competition!

Since we got all caught up on the year yesterday, I can post yesterday's update now. Ups and downs. She was doing so well on chemo that they recently upped her doses. Turns out it was too high and her counts dropped and she is bruising a lot. We are holding oral chemo for a week until we do labs to see if things are getting back to normal. But yesterday she had her FINAL SPINAL! No more lumbar punctures and spinal chemo after this. This is a huge milestone! They always result in headaches and back pain for her and combined with the low platelets, we are taking it easy and resting this weekend. Perfect weekend to start Christmas movies!

We are way past due for an update. But that's mostly because we have been back to our regular lives! Here's whats been going on since Spring: Ellie did have one quick hospitalization over the Summer for fluids after a stomach bug. Other than that treatment was smooth sailing all Summer. Make-A-Wish Georgia granted Ellie's wish to go to Hawaii and she did everything you could do there! She went surfing, snorkled with giant sea turtles, performed at a luau, went on a sunset catamaran cruise, ate Dole Whip at the Dole Plantation, took a UTV tour of Kualoa Ranch, and more! She started second grade, is in the gifted program this year,, and is absolutely excelling. In August we made time for a quick trip to our favorite place: Universal Studios! Ellie gets tired easily so we have to build in nap times and sometimes piggyback her when her legs and feet hurt. But you wouldn't know it was a problem since she started CHEER this Fall! She has pushed so hard and put in so many hours all while still in treatment. But it's been so worth it because her team took home first place at locals and we are gearing up to compete in Regionals in a couple of weeks!!

Had to cancel our infusion today because Ellie has a fever which means automatic ER workup. Hoping counts are good and it's just a respiratory virus we can deal with at home rather than get admitted!

Big news: Ellie is the local LLS Hero of the Year! This weekend she had an opportunity to share a little of her story with 2023 LLS Visionary of the year candidates and team members.

Thought we were done with clinic for 2022 but looks like we had another visit. Did physical therapy first thing this morning, now at the clinic getting premedications and port access to start an immunoglobulin infusion. Ellie is having a great day and getting spoiled with all the snacks!!

Last clinic visit of 2022. Getting some port chemo (and maybe some immunoglobulin depending on labs) then off to the OR for spinal chemo. Got the all clear for Christmas vacation at Universal!

Ellie has been home sick with parainfluenza and low counts. Today we found out her counts have dropped even further so we are stopping chemo for the time being. She is feeling much better though. And she lost a top tooth last night and couldn't be any cuter! Here's to hoping counts rise quickly so we can resume treatment! 🤞🏼

Ellie is in the clinic getting her port flushed and running labs to make sure the levels of maintenance chemo are working enough but not too much. And everything is looking good!

Great news today. Ellie's counts have rebounded amazingly and she gets to go back to school and dance and other in-person activities after having to stay out for a week. Also, her counts are high enough to start maintenance treatment next week! This means less in person visits, less counts dropping, and living a little more normally.

Ellie had a celebratory lunch and her fave~peanut butter pie @ Doc's Porchside - Grovetown!

Ellie's platelets were too low to get chemo last week so we are at the clinic trying again. They are high enough now but her neutrophils have dropped so we are getting one chemo instead of two. Last treatment before we hit maintenance treatment. This is a huge milestone for us! Unfortunately with her immunity being so low her Doctors have asked us to stay out of school until her counts are back up. We come back next Thursday to see where we are.

Ellie had chemo today. The flushes make her gag and she had just eaten a bag of cheetos 🤢 but thankfully the clinic keeps extra tee shirts just in case! Overall it went well though. Counts are still good and she got the thumbs up to go to the beach for a few days next week!

Ellie Janes counts are up and she was able to start her next phase of chemo today.

Update: Went to the clinic to try to start chemo again and counts still weren't up so we go home and try again in another week.

Ellie didn't meet counts this morning so no chemo today and tomorrow as planned. We go back next Thursday to try again and see if we can get this next phase started. In the meantime we are doing some painting!

Went in for labs today. Didn't need blood or platelets so it was a quick one! Neutrophils are still low but rising. Should hopefully be high enough to start our next phase of chemo later this week. We are getting close to the end of front line treatment!
Induction ✅
Consolidation✅
Blina block 1✅
Interim Maintenance 1✅
Blina block 2✅
Delayed Intensification ✅

Interim Maintenance 2

Maintenance

Wednesday update: Ellie got discharged around bedtime last night. She's feeling so much better! Her hemoglobin and platelets bottomed out again so she had both transfused before going home. She goes back to check labs again in the morning. In the meantime, she is enjoying sleeping all night with no vital signs taken and no pumps beeping.

Friday update: The shots to stimulate white blood cell production are starting to work. Inflammatory markers went up a couple of days ago which worried her Doctors but today they have started to come down. We have changed antibiotic regimen for about the fourth time. A CT showed Ellie has a severe f***l impaction so we are fighting to get her to drink Miralax and Mag Citrate. You can guess how well that's going. She has barely eaten in a week so tonight we started TPN and lipids (IV nutrition). She did feel like getting up and playing some games today so seems to be starting to feel better!

Tuesday update: Last night Ellie had an MRI on her shoulder. They saw a couple of small fluid collections and took her to the OR to aspirate but they were too small to get anything out, which is good. Ortho thinks just staying on antibiotics is enough. She spiked a fever again this evening so we have had another set of blood cultures drawn. Overall Ellie is becoming a little more herself though. Still feeling rough but was up doing nails and playing games today which is a big improvement. Also, we have at least a 2 week stay here on IV antibiotics if all goes well. She gets more chemo this week and they don't expect her ANC (immunity/white cells) to come up very much on their own so we are starting daily shots of a medication to stimulate her marrow to make more. Can't totally get rid of the infection with antibiotics alone- need some white blood cells too!

Update:
A little bit of maybe bad news but overall good news. Ellie's infection is manifesting as infected spots on her skin in a couple of areas but thankfully they are small and manageable and the antibiotics she is currently on should take care of them. She has had excruciating pain in her right shoulder all weekend so her oncology team has consulted ortho and infectious disease to make sure we aren't looking at a septic joint. Because of blood in her urine they are scanning for kidney stones today but she doesn't have any pain so it could be something else due to her low platelets here lately. She got her third round of platelets for the week yesterday and labs already look better this morning. The good news? The antibiotics seem to be working. Vitals have been stable and labs for inflammatory markers are moving closer to normal. Another blood culture was drawn and sent to the lab and so far hasn't grown anything so bacterial count is decreasing!!!

Ellie Jane update:
Got confirmation last night that Ellie does have a bacterial infection in her bloodstream. They have already started multiple antibiotics. She will also be getting steroids to boost her blood pressure and will be getting a blood transfusion shortly.

Topping off our rough week with a fever of 103 this morning which means automatic hospital admission. Hoping that her fever is from her chemo and neutropenia and not an infection 🤞🏼

Back in the clinic for a couple of scheduled chemo infusions today. ALL of Ellie's counts are dropping now. She got another infusion of platelets today and barely missed needing red blood cells. White cells have bottomed out too so back to isolating amd sanitizing everything, and back to the clinic early next week to see if we need more red blood cells or platelets before Thursday's chemo appointment.

Today was a rough one. Ellie has been having spinal headaches following last week's lumbar punctures. She has been having excruciating pain when sitting or standing up and only gets relief lying down. We had to go to the clinic this morning which meant sitting up for about 45 minutes in the car. She threw up nonstop the entire way there. But seatbelt safety trumps comfort. Thankfully our awesome peds heme-onc team got her port accessed and gave her meds and fluids to get her feeling better. Unfortunately her labs showed her platelets hit a record low today at 10k (normal is 150k-450k) so we immediately had a bag of those transfused as well. We snagged a quiet room in the clinic, turned the lights off, and just let Ellie sleep through all of it. We got home this afternoon and laid down for an hour and then she felt good enough to sit upright and eat dinner. After a long day she says she feels much better and like always wants to know if she can go to Grandma's tomorrow haha.

Came in for spinal chemo today but found out Ellie's hemoglobin is really low. So getting some blood before heading to the OR this afternoon. Have to be back Monday to see if we need more blood or not.