Elliott Can Beat it ALL

Just a little update on Elliott since I haven’t done that in a while ☺️

Miraculously we haven’t had any hospital admissions yet this cold season! Elliott has been fighting off several bugs since fall, but he’s come out of them quickly and healed up just fine.

At every appointment his doctors say how smoothly Elliott has sailed through treatment. Especially this last maintenance phase. 🙌

He’s getting stronger and smarter every day! In fact, he counted to three last night using his words and fingers 🥲 he’s also been taking a few unassisted steps that I have yet to catch on video. He was so close to walking before his diagnoses, so I’m really happy to see him going through this milestone with so much strength and confidence.

September 2024 will be here before we know it! We can’t wait to see Elliott ring that bell 🤍🙏🏻

What a crazy year it’s been since El’s diagnoses! We’ve been soaking up every bit of sun outside this summer and Elliott is doing amazing. His hair has come back, and this boy has all the energy!

He started the Maintenance phase of chemotherapy a few months ago and now only has to go to the hospital once a month. He will continue on this phase until September of 2024, then hopefully will be done with chemotherapy forever!

We’ve all grown so much this past year and I’m happy to say that we’re all doing great. Evie starts kindergarten tomorrow and Elliott is going into his second year of preschool, leaving me with some time during the day to figure out what I want to do with my days now that I have two kiddos in school! And most importantly, time to myself. This year has been full of trial and error, but it’s finally feeling like things are coming together in the best way.

As always thank you all for caring so much and continuing on this journey with us. 🤍

Our little vampire boy getting blood today 🩸

We all had a great Christmas at home, but jumped right back into chemo tues-fri last week and this week. Momma is exhausted, but Elliott has been a trooper as he’s been finishing this last bit before we enter the final phase of treatment 🙌🏻 this phase has definitely been hard, but we’re so happy to see some light at the end of the tunnel. All of Elliott’s labs have looked great until yesterday his hemoglobin was right on the line of needing a transfusion, so we’re getting that done today and should hopefully have quick visits the rest of the week before we get a bit of a break the next couple weeks.

They expect Elliott’s numbers to drop during that time, so we’ll be praying he stays healthy and doesn’t have to do anymore overnight stays. Also as you can see his rash is completely healed! He’s been so happy and energetic since he finished his antibiotics for pneumonia and we are loving every minute of it. Here he is doing his version of “I love you” in sign language 🤟🏻🤍

Our family was blessed with some extra Christmas gifts this year all thanks to Clayton’s Gift of Hope. Clayton’s mom Jessica has been so supportive throughout Elliotts journey, from checking in on us periodically, to helping put together gift baskets for our family, and now sponsoring us through their christmas program in memory of their son Clayton. If you’d like to follow their page you can find it under Clayton’s Gift of Hope here on Facebook to see what they’re doing for others during Christmas, and help raise awareness for motorcycle safety.

We were also blessed with a very generous donation from the Mackey Children’s Cancer Foundation. Joseph and his wife have put this together in memory of their two children, Claire and Patrick, who passed away in their teenage years from cancer. You can find their page The Claire E. and Patrick G. Mackey Children Cancer Foundation here on Facebook. Both of these families have been such an inspiration to us, and we will be forever grateful.

Last but not least, thank you to our long time friend Chelsey for surprising us with a gift bag today including one of her lovely candles. If you haven’t got a candle from Little Brown Bird you must! You can find them on Facebook and Instagram. They’re heavenly, and the absolute best quality for the best price.

We hope to one day be able to give to others the way so many have given to us during this hard time. But until then all we can say is thank you, thank you, thank you 🤍

Sincerely,
Kayla, Levi, Evie, & Elliott

Finally some good news! They put in the discharge order and we are busting out of this place to spend Christmas at home 🙏🏻💕💚🎄

They talked about finishing the IVIG infusion today while there could be more eyes on him, and adding hydrocortisone to the pre-med list, but they decided the risk outweighed the benefit so Elliott didn’t end up finishing that today and isn’t going to. His O2 is hanging out at 98-100 and he’s drinking fluids on his own so they are okay with him going home. They’re sending him home with a pharmacy of drugs to keep him comfortable and get him healed up. They pushed back chemo to next Tuesday and he will do another week of steroids starting then 😣 I thought we were done with those, but I guess not.

Thank you all for the prayers! They’re very much appreciated.

Elliott’s rash has now started bruising (as you can see on his cheek here). I’ve told the doctors and they haven’t given me much info on that.

Last night was not fun 😔 they started Elliott’s antibody transfusion around 9pm. They told me that there is a chance that he could have an allergic reaction so they did Benadryl and Tylenol before hand and are to monitor him closely throughout. Well about an hour into it El started coughing like crazy and his oxygen dropped to 84. His face was bright red and his breathing was very rapid. The nurses called the doctor and even with all the bright lights and so many people in our room Elliott laid there with his eyes closed… which is not like him at all. He’s a very light sleeper and doesn’t like to miss anything. I was distraught and freaking out. They decided not to continue with the transfusion, gave him albuterol, and he bounced back pretty quickly. Thank God 🙏🏻 The doctor decided to add another medication to his list to help with the itching of the rash because he’s miserable and kept scratching. Luckily that medicine worked and we were able to get some sleep after that.

Waiting on the doctors to do their rounds this morning to get some info on next steps. Please pray that Elliott is healing and we get to go home soon. That his body is able to fight all of this without the antibody transfusions, and that he gets to spend Christmas at home with his family.

I’ve been waiting all day for an update and finally got one about an hour ago. They gave Elliott Benadryl last night to see if that would help with his rash, but when he woke up this morning it was significantly worse. His eyes were almost swollen shut after I got them open from being crusted shut. He’s very congested and has to do breathing treatments due to his lungs being diminished. His X-rays showed a few dark spots that are most likely pneumonia. After the breathing treatment they said he sounded much better and they may have us do these at home because he has a lot of the early signs of asthma, it’s just hard to tell right now since he has so much sickness going through him. His labs all look good and he’s not neutropenic which is a good thing, but he’s still showing positive for RSV and they think he most likely has parvovirus (fifths disease) but we won’t know for sure. There’s not much they can do about the rash and they said it could get worse before it gets better. Since he is so immunocompromised any sickness he gets can show up full force with all the symptoms. So they decided on keeping us tonight just to see what his rash does and to keep him on fluids + breathing treatments, and antibiotics for pneumonia. He will be getting a transfusion tomorrow of antibodies to help boost his immune system, so praying his body kicks all this sickness out soon and hopefully we’ll be home tomorrow after that. Thank you all for comments and messages, I see them and appreciate them so much 🤍

(Pictures to show how much the redness has went away on his face rash since yesterday. It is all pretty well evened out in color, but spread to his whole body. Hoping it gets better tonight instead of worse!)

I wish I could say I haven’t posted for awhile because we’ve been doing so great, but the opposite is true. This phase of chemotherapy mixed with virus +cold/flu season has been HARD. Elliott has had every sickness that’s going around, and just got admitted for the second time since my last post after we came for his appointment today. I had a feeling this would happen because he ran a low grade fever off and on all weekend, and has slowly developed this rash on his face. It started on his cheeks so I thought it was chapped because he does this every winter, but it has migrated to his head and body. They’re thinking either drug rash from antibiotics he was on from having RSV a couple weeks ago, or a viral rash from something else entirely. They swabbed him for all of the things so we’ll be waiting on these results while we stay to get fluids in him and make sure he does okay through the night.

Being Elliott’s momma has taught me things can always be worse, and to be thankful for right now. He was diagnosed with Down Syndrome at birth which was hard, and he had (what I thought then) was a lot of doctors appointments and surgeries. But now after his Leukemia diagnosis those times seem so much more simple. Especially with so many hospital stays since his diagnosis, sickness with both kids, worrying, crying, worrying some more. Every time things start to ease up someone is sick again, or elliott gets admitted. But things could always be worse. I’m thankful that we are only looking at a 24-48 hour stay, and we should be home with family for Christmas. Elliott got some Christmas gifts from the 5th floor (our home away from home) today, and I’m thankful for the awesome people who take care of him and are so happy to see him when he’s here. Even though we all wish he wasn’t here. I’m thankful that I always have an unexplainable peace of mind being here that makes it not feel so bad. It’s so easy to feel down about unfortunate circumstances that we have to go through, and just because it could be worse doesn’t mean that right now isn’t really hard. But it puts things into perspective for me and reminds me how much I really do have to be thankful for.

Elliott may feel terrible right now, but he’s my sweetest smiley boy as usual and I’m especially thankful for that 🤍

I took both little critters to the hospital by myself today due to their dad being sick this week. Which let me tell ya, isn’t for the weak 😅 Today was the start of the Delayed Intensification phase (two more phases after this) for Elliott where he started a new chemo medication and is back on the terrible steroids. Luckily this time he just has one week bursts of being on them a couple times, so I’m praying they don’t effect him as bad as before. They said this phase will be the hardest on his body and they expect his numbers to be pretty low throughout, which means he’s more likely to be admitted. With RSV and flu cases on the rise I’m leaning towards waiting to start Elliott at preschool until next year, but we will see how he does. The pharmacist at the hospital said that multiple drug stores and pharmacies aren’t able to order ibuprofen because they can’t keep up with demand right now, so that doesn’t exactly ease my ‘mom anxiety’.

Speaking of sickness, both kids have yet another virus. Somehow Evie has had it worse than Elliott and has had a couple trips to ER and taking antibiotics, but we are getting through and praying he doesn’t have any complications with his lungs from the virus he has. Due to him having a bad cough and “course breathing” they didn’t sedate him for his spinal tap today. We’ve done this a few times before and he usually does pretty well, but today he fought hard and the needle slipped out in the middle of the procedure. They didn’t want to stick him again so he only got 1/3 of the chemo he was suppose to get in his spine. He still hasn’t had any leukemia detected in his spine so this wasn’t a huge deal, but worries me for future spinal taps if they’re unable to sedate him due to illness then we may have to delay which will make this whole process last longer than it already does. But one day at a time… We got through today and that’s what matters.

Thank you all for continued prayers and support for Elliott and our family. We’re so grateful for you all 🤍

We’re back in the hospital 😩👎

El has been fighting a virus for the past couple weeks, had chemo and spinal tap last Monday, and just had two new teeth break through.. so sure enough he’s been running a fever. Any time he has a fever we have to come and make sure it’s not a bacterial infection, which is a super big pain. But we’re chugging along and as always, nothing keeps Elliott down as you can see.

All of his labs look great, but they did say he’s positive for the “common cold” which isn’t a big deal. The only thing keeping us here now is a pending Covid test 🙃 which I’m not sure why they would keep him here for only having Covid anyway (this would be his 3rd time having it if it were positive, and second time in 60 days) I’m assuming just to monitor him and make sure he doesn’t go downhill, but hopeful for negative results! We are really hoping to make it back in time for trick or treating with Evie tonight 🙏🏻

We’ve been MIA from this page but that’s because Elliott has been doing so well! He started the third phase of chemotherapy “Interim Maintenance 1” a couple weeks ago. This phase he goes to the hospital every 10 days for two different kinds of chemo, and he only has to take one oral med at home on Saturday and Sunday. This phase has been much easier than the first two, with less trips to Riley and way less oral meds 🙌🏻

His energy levels are way up which I believe is due to the chemo working and him feeling so much better. It’s crazy for us to see him in this new light and so much happier after being sick for so long before we actually knew what was wrong. He’s definitely a typical toddler now and getting into everything. Always on the move and has a new found need for independence. Which I am totally okay with! He’s even been feeding himself with utensils! Time is flying right before my eyes and I’m soaking in everything. I’ve been feeling a sense of peace and calm for the first time in awhile now that we are in the swing of things, and it’s been such a breath of fresh air.

Elliotts hair has thinned significantly so we are planning on doing the full buzz this weekend. Dad and I are having a hard time with this so we’ve been putting it off for as long as possible, but we know it will come back eventually. Here’s some pictures of our chemo day yesterday and trip to Applebees after.

As always I want to thank everyone for donations and prayers, we seriously wouldnt be able to do everything we’ve done without you all. I was able to buy Elliott his very own iPad for our hospital trips to help keep him entertained during chemo, and we have been able to take him and his sister on a few fun outings like the pumpkin patch, falls festivals, and children’s museum. Doing these things has brought us happiness and a sense of normalcy through all this. We also got a special carrier to make it easier to tote Elliott around all of the different places. So from the bottom of our hearts, thank you! You’ve all helped make life so much easier during this crazy time in our lives when you didn’t have to and it truly means the world to us.

This is how Elliott (and all of us) felt about finally getting to come home today! 🙌🏻

Update:

While Elliott and I got some much needed rest this afternoon, several people including the infectious disease team, came and talked with Levi about what they found in El’s blood cultures. The bacteria is ‘moraxella nonliquifaciens’ which is commonly found in the upper respiratory tract and can sometimes cause pneumonia, or meningitis. From what I understand it’s not foreign to people with a regular immune system, but since Elliott is immunocompromised this is what made him spike such a high fever. Although it’s rare, this can be fatal for children under Elliott’s circumstances but they are not worried about him getting through this without any issues. They switched up his antibiotics to treat this particular bacteria and he is still on track for his treatment/spinal tap tomorrow as previously scheduled. This is a huge relief! Thank you so much to everyone who prayed and reached out to us today, we appreciate you all. 🤍

I got a call from Elliott’s doctor at 9pm last night regarding the blood cultures they took Saturday night when we were in the ER. They told us that it usually takes 48 hours for them to grow anything and sure enough one of them was positive. They wanted Elliott admitted asap to start antibiotics because if he has a blood infection he can get very sick, very quickly. We got here about 11pm and they told us that only one of his cultures was positive which made it questionable, because it was the one from his arm and not his port and typically if one is positive the other is too. It could be a contaminate to the sample, meaning something from Elliott’s skin or someone else’s skin could’ve gotten in the sample but they said the type of bacteria it’s positive for isn’t usually a cantimiate and more likely to be a blood infection.

Everything is all up in the air right now as we wait 48 hours for new cultures to show anything. Hopefully everything is okay and we get to go home by the weekend. I’m not sure what next steps will look like if he does have a blood infection but if everyone could please pray that all is well and he doesn’t have a blood infection we would greatly appreciate it. I know he is in good hands, but we are still very worried.

One thing I know for sure, is that nothing is for sure.

Levi and I went out of town yesterday for some time to ourselves while El and his sister stayed with Mimi and Lolo. El had been running a low grade fever since his spinal tap thurs, but that’s not unusual for him. His fever ended up spiking to 101.2 about 6pm last night which is a big red flag, and Riley wanted him to come to the ER to test for possible infection anywhere and get him started on antibiotics asap.

We loaded up and left about 7pm and didn’t make it to Riley until 10pm after picking up Elliott. They got us in nearly immediately due to El’s circumstances even though the emergency room was completely packed. By that point his fever had gone down with the help of fever reducer and he seemed okay. They had trouble accessing his port which was a complete nightmare, especially because I didn’t even think to put numbing cream on in the midst of it all before we left for the hospital, so he felt everything. They had to have another access point that wasn’t through his port to compare the blood in case he had an infection in his port, so they had to stick him twice in his hand before they finally got a vein. By this point it’s nearly midnight, Levi, Elliott, and I are all frustrated and tired and we waited nearly 4 more hours before we got answers. We were told that it’s probably a virus that’s going around and his body just trying to heal.

We made it home around 5am this morning. Elliott has been resting and seems to be doing better. Still no appetite and not much energy. We planned on having a fun filled weekend both by ourselves and with the kids, but reality checked us and we were reminded that nothing is for sure right now and we are at the mercy of Elliott’s health around the clock, no matter what. I cried on our way to pick him up because I’m just so exhausted of constantly worrying about him. I think I will worry about him for his and my entire life. Of course we all worry about our children, but it’s different with Elliott. It has been since the day I found out he could possibly have Down syndrome, and not a day since then have I not worried about his well-being. I just want him happy and healthy and it’s so hard watching him go through some of the things he’s been through in his short 2 years of life. I’m thankful for Levi in those vulnerable moments more than anything because he helps remind me that we will get through this, and Elliott is a fighter. No matter what obstacles we have to go through we have each other, family, and a lot of people behind us throughout this.

On our way home last night we were starving and got to Taco Bell right before they closed. We sat in the parking lot eating as Elliott slept in the back seat. I asked Levi, “do you ever have a day you feel like you’ll never forget?” And he said, “do you think today was one of those days?” I said yes and we both knew why. We finally got time to ourselves and had a blast with friends and each other, it quickly turned around and we were heading to the ER before we knew it, but everything turned out okay. It was a day so far out of our normal day, and all so unexpected. It was bittersweet, and it was most definitely a day I’ll never forget.

I’m sooo happy to say that Elliott is doing amazing. He’s back to his happy self as you can see, and I can tell he’s feeling much better. He started consolidation yesterday and everything went smoothly. We will be making weekly trips to Riley for the next month, and el started an oral chemo that I give him at home every day, on top of the two treatments he receives at the hospital weekly.

Since I haven’t shared this part of our story I thought I would- About a month before Elliott was diagnosed I noticed he just wasn’t himself. Very tired and fussy. He would be on the floor playing one minute and the next he would be laying down just staring at his toys. I thought this was unusual but he was also teething so I blamed it on that. Then the bruises started coming and I figured he’s moving around more, pulling himself up on things, and wanting to be apart of activities with other children so I thought he’s probably gotten bumped or fell down while standing. After about 2 weeks of that he started to lose his color. He had previously been on an iron supplement for his first year and a half, but he was due for new labs to see if he needed to continue that. When I went to get his labs done they couldn’t get his vein and I was suppose to take him back but things kept coming up and a month ended up going by. I was at my moms for dinner and asked her if Elliott looked like his color was off. I see him all day every day so it’s hard for me to know. She agreed his color wasn’t right and we started googling. I remember she specifically said “I don’t want you to freak out and I don’t think this is it but some of his symptoms are signs of leukemia”. I decided to take him to the ER because I knew they could get a vein and I just had a gut feeling we needed to know asap. From the ER they transported him to Riley for blood transfusions because his labs showed very low red blood and platelets. The next day our worst fear was confirmed.

Since then I have been on a roller coaster of emotions, and I don’t think I fully processed everything until Elliott was released from the hospital and we came home. I feel like the past month I was living in a dark hole with Elliott. Seeing him so emotionless and not himself was so hard on me, but now that he’s back to himself I can finally see some light. We are back on our normal routine, my house is clean, I have groceries, and catching up on laundry. I’m finally wanting to socialize and get things done that need to be done. We have plans to go to the lake this weekend as a family and I’m ready to fully enjoy what’s left of our summer without letting cancer rob us of those times together. We still have a long way to go, but we’re ready to fight our way through this with a smile on our face.

Of course as soon as Elliott gets off of the steroids and feeling better, him and his sister test positive for Covid. I feel like it’s been one thing after another and I’m mentally EXHAUSTED. If I haven’t responded to any of your messages, comments, texts, or calls please know that I see them and I’m so appreciative. I will get back to everyone eventually, but right now I’m using any free time I have to take care of me.

With all that being said I got a call today about Elliotts results from his bone marrow they took last Friday and he is NEGATIVE for leukemia at this time, which means he’s in remission 🙏🏻🙌🏻🙏🏻 remission doesn’t mean cancer free, but it does mean that the chemo is working and he won’t need to be treated as high risk. The next month he will be in the consolidation phase which will consist of us going to Riley once a week for intravenous chemo, lumbar punctures, and an oral chemo. This phase is where Elliott will most likely lose his hair, and possibly his appetite which could lead to him having to get a G-tube. One step at a time though, and we will cross that bridge if/when we have to. Thank you for everyone who has prayed this far, this news was most definitely a prayer answered. 🤍

Elliott is officially done with the first phase (induction) of treatment, and we are on to the second (consolidation). He has had two appointments since I’ve last updated, but life has been crazy and I’m just now finding time to get on here. Long story short, he’s doing really well! His numbers have all looked great, and his body is making platelets again. He had a spinal tap and bone marrow check last Friday and we will hear back about results tomorrow or Wednesday.

The results will let us know what next steps will look like depending on if they find any leukemia in his bone marrow or not. If so it will be a more extensive treatment lasting two months, and if not then he will do standard treatment lasting a month. Praying for no cancer detected. 🙏🏻 He had his last dose of steroids on Friday and his personality is already coming back, which we’ve all been so happy to see.

I’ll post results and next steps when we find out. As always thank you for the continued prayers and support. 🤍

One of the hardest parts of all of this is Elliotts lack of interest and personality. He was always the most happy and smiling boy, but now he’s just so void of emotion. I know it’s because of the steroids, and I know he will be back. I have my child in my arms, but I still miss him so much. I just want life to be normal again. I spend my spare time looking at my camera roll to feel a little piece of the old him. Looking forward to seeing these smiles, and hearing his sweet laugh again soon.

Backstory- Elliott absolutely hates taking his meds. I have to wrap him up in a blanket to pin his arms down and hold his mouth shut after I force the medication in bit by bit. I know it sounds terrible and it feels like it too. Both of us despise it and it gives me terrible anxiety having to do that to him. In the middle of me doing all of that and him crying yesterday morning, he aspirated one of his medications. It was only a little bit, but he had a really hard time breathing after. I won’t get into all the details, but it was bad enough for me to call an ambulance for help. Luckily he’s okay, but with Elliott having past choking spells, I’m absolutely terrified of anything like that happening again, so I called his oncologist and decided on a different route.

Today we went and got an NG tube at Riley for Elliott to only take medicine through. It sounds scary, but he will still be able to eat and drink regularly, and the nurses actually had me put it in him after practicing on a doll. Surprisingly it’s pretty simple and now I know how to do it if he pulls it out (which has already happened once before we even got back from the hospital). But it’s not a one person task because he is definitely a fighter. Hopefully this makes things easier, and I’m just thankful this was only a minor bump in the road.

HUGE thank you to everyone who went to Attica Pizza King yesterday to support my sweet boy and our family. I got several messages from people telling me how busy it was all day, and I’m just amazed by how you’ve all come together for us during such a scary and difficult time in our lives. We are so blessed to have such caring people behind us throughout this. Thank you! 🤍

Today we traveled to Indy for another round of chemo and big sister joined us! They had to access his port which was not fun, then he had a 5 min chemo session. Elliott ate snacks and watched his favorite shows throughout and was much happier after the port access.

Riley has child life specialists who come talk to siblings about what is going on with their brother/sister in a way that a young child will understand. Because it’s not only hard on the patient but the entire family as I’m sure you can imagine. They take siblings to play with toys, and today Evie got her own “chemo duck”. The duck has a bump in its chest to resemble Elliott’s port and they taught her how it works, how to clean, and dress it. She got a bag full of bandages, dressings, and medication syringes so she is now a pro at it. She also now wants to be a nurse when she grows up.

All of Elliott’s labs came back great, and his port incision is healed up well. The last spinal tap results were in and still no Leukemia in his spine which is awesome and we hope that’s what they find every time. We go back next Friday for the same thing, then the week after he will have a spinal tap to see if/how well the chemo is working. Praying for all good news in the next few weeks, and that Elliott starts getting his strength back to be able to play like he use to. The steroids make them achy and all around not well, so once he’s off of those that will hopefully be when we see more activity out of him.

As always thank you for the continued prayers and support. A special thanks to our friends at Attica Pizza King for going above and beyond to support Elliott through this. I’m blown away nearly every day by the love that has been and is continuously shown to our family.