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Stay updated with little bean


November 1,  2022

here for his stem cell infusion! should just be a couple hours and we'll be on our way home.


October 30, 2022

special thank you to the Lakeville Volunteer Fire Department for this incredible and heart warming surprise for our little guy last week!! he had an awesome time pushing all the buttons in the fire truck, as well as in his own little truck given to him from the guys at the station! you guys are so kind and we're so thankful for you thinking about him like this. he loves that truck and hasn't stopped playing with it! thank you!


October 22, 2022

mibg therapy went well! he slept through most of wednesday once he was sedated, and today has been up and down in regards to him being alert. we've had to bump up his sedation a few times because he's getting too fiesty and trying to rip chords and tubes out. when he's awake we can talk to him and he talks back and plays with his toys and watches tv. but then he starts wanting to get up and gets himself super worked up. but tomorrow by this time we should be home! 


he started with a radiation level of 28 mrem/h from a meter away. this was yesterday around 2pm. today at 4pm, he was at 8.7. he has to be 7 or below to go get his mibg scan and be discharged. so they're confident he will be ready by morning! and thank god because we could not do this for an entire weekend. he would be miserable. 


grateful he was able to have this treatment, and i'm hoping to see it help his chances of staying in remission in the long run. a lot of kids have a lot of success with mibg! 


next month he will have another round of chemo, and then decide on surgery. after that, one more round, and then diagnostic tests again to see where his disease is at (this will include marrow aspirations, ct, mibg, and probably a petscan)


after that, it'll be time for stem cell transplant. this has been increasingly on my mind and while i know we have time (probably end of january), i'm terrified. i know the tandum transplant has great success in curing these kiddos of cancer but the risks involved are scary. 


just trying to take it a day at a time. excited to be home tomorrow! 


October 20, 2022

mibg therapy went well! he slept through most of wednesday once he was sedated, and today has been up and down in regards to him being alert. we've had to bump up his sedation a few times because he's getting too fiesty and trying to rip chords and tubes out. when he's awake we can talk to him and he talks back and plays with his toys and watches tv. but then he starts wanting to get up and gets himself super worked up. but tomorrow by this time we should be home! 


he started with a radiation level of 28 mrem/h from a meter away. this was yesterday around 2pm. today at 4pm, he was at 8.7. he has to be 7 or below to go get his mibg scan and be discharged. so they're confident he will be ready by morning! and thank god because we could not do this for an entire weekend. he would be miserable. 


grateful he was able to have this treatment, and i'm hoping to see it help his chances of staying in remission in the long run. a lot of kids have a lot of success with mibg! 


next month he will have another round of chemo, and then decide on surgery. after that, one more round, and then diagnostic tests again to see where his disease is at (this will include marrow aspirations, ct, mibg, and probably a petscan)


after that, it'll be time for stem cell transplant. this has been increasingly on my mind and while i know we have time (probably end of january), i'm terrified. i know the tandum transplant has great success in curing these kiddos of cancer but the risks involved are scary. 


just trying to take it a day at a time. excited to be home tomorrow! 


October 18, 2022

we are in chicago at comer children's for mibg therapy! we are up in the PICU because he has to be on sedation, but everyone has been very nice. it's not our home hospital but they're making us feel at home as much as they can! 


before we got here, we came up a day early to hang out with gaga, aunt kiki, and uncle jake. we went to the science museum, and then the cheesecake factory. he had a ball!


tomorrow he starts his therapy. hopefully we will be out of here by friday, but they're guessing probably monday. he has to have a scan, and they only do those on the week days 😅 so fingers crossed his radiation level drops quick so we can get home asap! 


we're nervous but grateful for the opportunity to both help him and kiddos in the future. it's getting tiring having to even do these things, though. it gets overwhelming. nobody wants to be dragging their kid to hospitals all the

time. he should be out enjoying everything other than a hospital. but it is what it is. we're lucky to be near so many excellent children's hospitals!


September 30, 2022

i used to be awful around puke. ive been terrified for this stage of treatment because puking is like, par for the course for chemo. i think i'm over that fear after the past 5 days 😅


all things considered, he is doing great. the first three days home were rough (starting as soon as we pulled into the garage and his stomach decided that was it) when we stayed on top of the nausea meds (and he didn't hurl after taking them) he did better.


tuesday he was wiped. barely ate, fell asleep by 6 and slept in the next morning. i was sure he was gonna need a transfusion. but wednesday he was better, actually had an appetite, and thursday's blood results were amazing. so either his ANC dropped quickly and rebounded, or it hasn't dropped yet. time will tell. 😅


but good numbers means we've been around everyone else hanging out. he got to hang out at the barn today with everyone (after momentarily freaking out thinking he was going to get a shot or messed with), he's hanging out with his gaga tonight and grandpa tomorrow. he feels great and is abusing the word "no". he thinks he's hilarious. i'm exhausted. 


we go to comer in chicago on october 18th, so we've got some time. we're hoping to hit up the zoo bash at the fairgrounds next weekend (as long as his thursday numbers are good). 


you may be wondering what his costume is. if you know me, it's no surprise. neil got to pick last year and he picked pikachu. this year riley is being flynn rider. no i'm not taking criticism. this is the moment ive been waiting for. he's gonna make a cute little eugene. 😂❤️


thank you to everyone who is supporting us, whether it be through donations, prayers, favors, or reaching out just to name a few. it is the end of childhood cancer awareness month and i hope many of you are more aware of it now than you were before september started. remember, only 4% of government funding goes to childhood cancer - 4%! and all childhood cancers are grouped together. and a statistic for riley's specifically, only about 700 are diagnosed with it yearly. so i guess he's special? 😅❤️


September 25, 2022

round #3 is done! this one was rough and continues to be. the nausea started yesterday and has been awful today. the car ride home was hard. and this evening he's puked back up anything he's had, even when he's just been around certain smells. we know it's normal, and we've been expecting it. it should only last a few days, but it's hard. it's hard because now he actually seems sick, and it makes us really remember what disease we're dealing with. 


thankfully he's still got a positive attitude. before bed he wanted to snuggle and watch funny cat videos. those are his favorites. 


he also got his flu and covid vaccine today, so that helps us feel better knowing he's going into flu season with a little bit of protection. ive been nervous about covid coming around again. 


thankfully, the next part, the mibg therapy, should be pretty painless for him. round 4 will be near his birthday, and it can be rough too but it's not as long. 


September 22, 2022

we are officially starting round 3! well, the hydration, at least. probably gonna start actual chemo around 630/7. 


this stuff is known to be big on making him nauseous and sick so...not looking forward to this one. three days then we can go home. hoping he takes it in stride like he has everything else!


we didn't think we'd see dr. bear today, so that was a surprise. and when we got to our room, we found out we had our favorite nurse from the beginning, amelia! 


hoping this round goes easily and he recovers well. three weeks and then we do mibg therapy. just keeping on the path we're on! 


September 19, 2022

we have had an AMAZING website created for Riley's journey and his #beanstrong merch! here you can read updates, make donations, and share pictures of you showing your support for our little guy! 


Click here for the page! 


Shoutout to Kamryn for the amazing work and love she's put into this for him! ❤️ 


September 19, 2022

riley has officially had his stem cells collected!


i will get a final count tomorrow, but they got more than enough. they won't use many of them for his two transplants, but they will at other times and it's good to have them in case he relapses down the road. it was pretty easy, he slept through most of it. the hardest part was keeping him still and chill. he only had a few meltdowns. our apheresis nurse was amazing and helped keep him entertained by letting him shoot the cap off the thermometer for like a half an hour. 


he was also filmed! well, his lines and the process was. they are making an informative video for parents and kids in the future going through this procedure and asked to use riley! they were awesome! 


today we also talked to dr. bear, who is his oncologist at riley. i say this all the time but we are so lucky to have her. she came in and talked to us for nearly an hour. we found out that riley does not have the ALK gene, which means that he won't have a maintenance phase of treatment. any less medication he has to take is a win with us. 


she also said after a lot of studying and asking for others opinions in radiology, it looks like there may be a little uptick of mibg in his femur. it's very faint, but this would make sense since we know it's in his marrow. nothing new, nothing bad. just something they saw upon further study. but it's tiny, and that's good! so down the road when he gets radiation, he may get a little there. which i also learned he will get two little dot tattoos to show where to get the radiation and knowing he will be tatted before the age of three? amazing. 😂


speaking of study, we found out today he has been randomized to arm B of the study. this means he will be getting MIBG therapy after round 4! to sum it up, they do an infusion of radioactive mibg that will be absorbed by just the cancer cells, wherever they may be. he will be radioactive for a few days, and we will be doing this procedure in chicago. unfortunately, he with have to be cathed and we cannot be in there with him for very long, so he will be resting and out of it for most of it to keep him calm and comfortable. dr. said chicago is good about getting them out fast, so hopefully it's just a few days. it's gonna be harder on him than us!


mibg radiation therapy is used in relapsed high risk neuroblastoma already. the study is basically seeing if introducing it earlier, within standard treatment, can help prevent relapse in more kids. we are excited to have the opportunity to both offer riley cutting edge treatment and be able to help doctors learn and help more littles like him in the future! neuroblastoma is still fairly  unknown, and while they've made so much progress in the last 20 years, there is ways to go. 


now we're home until thursday morning, when we go back for a few days of chemo. this round is going to be harder on him, and we're all nervous. but he's in good hands, and he's a tough guy. 5W will take good care of him! 


September 18, 2022

its stem cell retrieval time! we're down here in indy staying overnight, and tomorrow we show up to clinic bright and early for blood work and the retrieval! hoping it's only a few hour process. they're supposed to be filming parts of it to

make a video for parents and kids to see how the process is in the future, so that'll be exciting! 


other than that, things have been just fine. no hospital admits these last few weeks and that's a victory in our eyes! 


we stopped at the grissom air museum on the way here, and had dinner at olive garden. hoping to head home fairly early tomorrow, just to come back thursday for round 3!


September 14, 2022

bald looks pretty good on this little turd, i'm not gonna lie. no longer neutropenic! made it through the rough part without a fever this round so we are happy about that! we've been doing almost daily blood work so we've spent lots of time at the hemonc peds clinic at memorial and we love everytime we visit! everyone is so sweet. next week is back to riley for stem cell retrieval and round 3!


September 14, 2022

Ever since we got home from round 2, Kelsey has been taking Riley up to memorial for routine blood draws in preparation for Stem Cell Retrieval.  On Friday, he ended up needing a blood transfusion, so I took the afternoon off so Kelsey could take a break.  We were lucky enough to get to meet some players and Coach Freeman from the Notre Dame football team!  They brought us some lunch and sat and chatted with us for a few minutes, which was pretty awesome!


Today, Kelsey and Riley went in for his blood draw, and they found that his ANC levels are WAAAY higher than they were on Monday, up from 150 all the way to 3000, meaning he is no longer neutropenic!  We’ve received our marching orders for round 3 and the stem cell retrieval.  We leave on Sunday for Indy - we will have a blood draw Monday morning, followed by the Stem Cell retrieval later that day.  After that, depending on his levels, we may or may not get admitted immediately for round 3, but either way that should be starting by next Wednesday!


September 6, 2022

Hello, all! First off, I realized today I hadn't updated since we got admitted. Whoops. Round two went great! He had a ton of energy, vitals all were stable, and it was an easy going stay. We even got two nights away thanks to Gaga taking the night shift! We had the same nurse every night and she and Riley had a whole system down when it came to vitals and diapers. She was fantastic - you rock, Krysta! 

He got to finally visit Child Life this time. He thought that was so cool, and I hope someday we can take him when he isn't hooked up to an IV pole.

In the last post, Neil had mentioned that the social media guy for the hospital was taking pictures of him. They posted about him on their Facebook and Instagram page. We loved the pictures and all the love they gave our little guy! Even during rounds, they referred to him as "our 21 month old instagram star" 😂 

Check out the Facebook post here!

Other than that, we have just been hanging out at home and having fun with family. After Thursday, we will keep him away from people because he will be neutropenic again. We don't want him to get sick and end up back in the hospital for antibiotics! 

We are doing every other day bloodwork and a daily shot in preparation for his Stem Cell retrieval. The whole process is confusing, but basically his transplant team is watching his labs and waiting for a certain window to appear. And when it does, we double his shot dose, and we come in three days after. They've got it down to a science, I just wait and do what they tell me. 

Thank you again for everyone's support and kindness. We still can't thank you all enough for the generosity you've shown towards us and the kind words you send our way. We feel the love, especially Riley! Nothing much more to say, and we like it that way! 


September 3, 2022

Riley Koontz, 21 months, was getting his steps in quickly as he made his way around the playroom on his Riley Hospital for Children floor Thursday. In between steps and a quick vacuuming Riley was saying his favorite word – buttons. He loves buttons of all kinds, including camera buttons. It started out when he learned he could turn on the lights within an RV by pushing buttons, and his interest has grown from there. Riley is a fun kid who has an interest and fascination in all things, and an energy level that matches his enthusiasm. Everything from vacuums to stethoscopes are fun to Riley. He’s clever and entertaining, and has unique qualities for such a young kid. One of those qualities is letting his parents know when he’s about to do something he shouldn’t. He’ll wave his finger back and forth while saying, “No,no,no” prior to his mischievous acts. Most of the time though he’s just having good, clean fun like playing with his cousins or going for a ride in the golf cart at his farm. He’ll be able to go home for an interim period once he completes the second round of his chemotherapy treatment. He is receiving treatment for neuroblastoma off of his adrenal gland and within his bone marrow. The treatment is going well, and Riley continues to be his playful, energetic self. Once he heads home Riley will have plenty more buttons to push and play with. #childhoodcancerawarenessmonth #RileyHospital #childrenshospital


September 1, 2022

We got our first round of Chemo for Cycle 2 last night!  If everything goes well, round 5 should be early Sunday morning and we should be home later Sunday!


Yesterday, we went in for a PET Scan, and afterwards we sat down with Dr. Bear to go over the treatment plan again and to answer some questions that we had.  We also got to take a look at the images from the PET Scan, where we received even more optimistic news.  It appears that the tumor isn’t super active, and the PET Scan didn’t show anything in his bone marrow, so whatever is in his bone marrow isn’t active enough to show up on the scan.  So we got some positive news yesterday!


We also talked about the next steps.  At some point before Cycle 3, once his blood counts and ANC are back up, we will come back down for Stem Cell retrieval which is an outpatient procedure.  I’m hoping this lands close enough to the start of Cycle 3 that we don’t have to make 2 trips, but we will roll with whatever they need us to do.


Once they have retrieved the stem cells, they will clean them up and freeze them in preparation for Stem Cell therapy following round 5.


Before that though, following cycle 4, they will perform more tests and scans to determine how well the cancer has been responding to treatment.  If the tumor has shrunk a lot, they will move us on to cycle 5, after which they will remove what is left of the tumor.  If it hasn’t shrunk much after cycle 4, they will perform tumor removal at this point to remove as much as they can.


As I’m typing this, we are being interviewed and photographed by someone from Riley’s social media team, which is pretty awesome!


 All in all, this cycle is shaping up to be pretty routine as far as cancer treatment goes, so our spirits are pretty high!  Riley keeps running around his crib in the room like it’s a wrestling ring, and he’s been so happy the last week, which has kept us in pretty high spirits as well!

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September 1, 2022

I just wanted to take a moment in honor of Childhood Cancer Awareness month to just remind everyone to never take anything for granted. You never realize how much a few days can change your entire life and your entire perspective until you’ve had a heart stopping event like a cancer diagnosis, especially in a child as young as Riley. 


Riley is almost 2 and he has no idea why we are back at the hospital getting pumped full of chemo drugs for the second time in a month. All he knows is that his parents are right there with him and you’d never know he has cancer just from watching him run around screaming and playing. This kid has given me so much more perspective on life from the eyes of a toddler, and I am so grateful for it. 


Please remember to always take care of one another and keep in mind that your life can change in an instant and holding on to grudges or animosity against other people isn’t worth it, regardless of personal, political, or cultural differences. Never forget to tell the people you care about the most that you love them.


August 30, 2022

Today we left for Indy for round 2! The past few days at home have been awesome. Other than me being worried about Riley's central line (which, last we knew, worked), we've just been enjoying time together and with family. 


Speaking of, all the guys decided to shave their heads to be like our little guy. It was a fun night and it still blows my mind knowing we have such a good support system. They definitely make it easier! 


Riley had lots of fun playing with his cousins this past week, as well as playing at home with al his toys. Thankfully he never asked for the ipad, which we're trying to keep a hospital / medical trip thing only. 


We made it to Indy (and had to call 911 because when we got out of the car with the keys in it at one point, it locked for SOME reason. riley was laughing the entire 5 minutes it took me to finally get the dang app to unlock it) and went to the cheesecake factory. he's eaten his weight in bread (and salad??) and is now knocked out i. his pack n play. 


neil and i got to go back to work for a few days. i got to work out at both the gym and with the trainer. we could make normal meals, and have a normal bedtime routine, and overall just feel normal. we miss normal. 


he has a PETscan tomorrow, and then he's getting admitted for round two. hoping his levels are good and we can jump right into chemo without transfusions or anything. wanna get this done and get the heck home! 


August 25, 2022

Riley's hair started falling out last night. We hoped that it could make it to Sunday, when everyone was gonna cut theirs along with him. It didn't last that long. By nap time today, it was falling out in clumps. We decided it was more traumatic to watch it fall out (for us parents, anyway) than to just shave it. So Neil and I did it today. We definitely cried more than he did, but damn does he make a cute little bald toddler! 


The best part was him running up to the mirror, smiling and laughing, and running away. He loved it. I even got my hair cut super short (for me, anyway) I couldn't go full buzz. But I figured to go out of my comfort zone and go for that punz vibe Ive always wanted to do. Neil will buzz on Sunday with the guys!  


Other than the hair missing and his lines, you'd never know he was sick. And we are enjoying every second of that. ❤️


August 24, 2022

Seeing the way Riley has been running around yelling and screaming these past couple days, you wouldn’t know he has Cancer.  You wouldn’t even know he’s sick.  But we know.  And we can’t let him know that we know how sick he is.  But he gives us hope. He gives us the strength we need to continue not letting him know just how scary Cancer is.


Thank You Riley.  Thank you for showing us how to have hope.  Thank you for being so brave.  The bravest ever.


August 24, 2022

his anc was 490 and they let us GO! his hgb was 7.5, so we may need blood before we start round 2 of chemo next week. but his doctor will call and let me know. other than that, he's feeling great! he took his first over 3 hour nap in his bed in weeks, and had a good dinner, and played with his toys. it's the first little bit of normal we've had in what feels like forever. 


we leave next tuesday for indy, and start it all over again. hopefully we won't be too long past the original plan. pet scan, possible line fix (it's working now so who knows) and round 2 of chemo. his stem cell retrieval is after round 2, so i don't know how that's gonna work. but we will see when we get there. we miss our friends and nurses over at riley, but we're grateful to have a week of normalcy before we do it all again. 


August 23, 2022

we've been stuck here at memorial since friday. we were home for a whole 3 hours before he had a fever and we had to go back.


we've been waiting on his anc to go up. it was 0, then 10 for a few days. this morning it was 130! (first we were told 13, but then the nurse had misread it!) so it's finally moving. the doctor said tomorrow we should be good to go! which is nice because neil’s back to work and this kid's wild and i wanna let him terrorize the cats and not me. 


thankfully, saturday night grandma and gaga took the night shift, and sunday night was aunt jenn and aunt janessa, so we got two nights of being able to go to dinner and sleep in our own bed! 


apparently his line is drawing blood again, so maybe he won't need to be poked. we're hoping it fixed itself, but it may have just been the position he was laying. we will see at draws tomorrow!


August 20, 2022

Luckily, everything we needed can be accomplished here at Memorial, so for now, we just wait for discharge in a few days once the doctors are confident we are good to go home. Still glad to be close to home!  


Kelsey sent me home last night to sleep in our bed, and when I got back this morning, I did the same for her. She has been so strong these past 2 weeks.  Thank you for everything you do Kelsey ❤️


August 20, 2022

i guess the word fever can't be spoken around the house, because then one shows up. hoping they can admit us here and get him on antibiotics and send us on our way. 


cancer sucks. 


August 19, 2022

just wanted to put this here so we had it. this was his MIBG scan. that poor little kidney on the right is being squished so bad 😂 The left is the liver. This is lit up because it absorbs the dye. This is the same with the bladder below. The right is the tumor (the poor little white thing is a squished kidney lol!) you can see those little dark spots that dr bear is thinking are dead areas of blood. the rest of that little blob is tumor. that we know of, its not wrapped around anything dangerous / keeping them from removing the entire thing. but we will know more as treatment goes on.the medical world is wild! 


August 19, 2022

Let me begin by saying we are home! For good? No, haha. But until August 30th at least! this is a long one folks. i probably forgot some stuff. We weren't sure if they'd let us go today. After finding out his central line was messed up (it can't draw blood, but it can have things pushed in) we were sure they were going to admit us to fix it. But when we sat down with Dr. Bear to discuss the next steps and the results of his MIBG scan, we were so happy when she said we can deal with it before cycle 2 and we could go HOME! Today he had his MIBG scan. To sum it up - some cancer cells have little doors that let in this liquid he is injected with. (its like a complex ct scan) When scanned with this in his little body, its can show where the cancer cells are in his body. While most cancer cells can do this, some are just difficult. In 10-15% of tumors, they do not allow this stuff in much. Nothing wrong with it! Just the way its chemistry is. Well guess who is part of that 10-15%? 😅 Riley's keeping Dr. Bear on her toes. While it was able to get a little in, it didn't show much. But it did show enough to see that we are pretty sure he only has the one tumor behind his spleen. That's GOOD. We know from the bone marrow biopsies that its in there (and that's what makes his cancer the high risk category). But we also know from those biopsies that its not nearly as much as they thought. That's GREAT. Does that mean it'll be easier to treat? Not really. Treatment will stay the same, but she is optimistic that this is a great place for him to start. He's doing well otherwise, took cycle 1 great, and the tumor hasn't spread. This is a great start for the rest of the road ahead. We will be doing a pet scan at the end of the month. this is the scan that will help us see if there are any cells anywhere. pet scans are a pain to get with insurance, so that's why MIBG has to be tried first. On the pet scan, it will show up as a light, bright spot where there are cancer cells(anyone remember Augustus Waters in TFIOS going "i lit up like a christmas tree, hazel grace"? yeah, that's where that idea comes from. oh man that part kills me every single time)anyway! dr. bear said that this should help us see if its any of his bones and how much, as well as if its in little spots anywhere else. she said that there could be cells in some lymph nodes and such, and that that's normal. but! there was one thing we learned about the tumor:in the scan of his tumor, we could see most of it lit up with a little of the MIBG injection. we saw three little dark spots, though. she explained that these are most likely blood pockets, and in simple terms, a dead, inactive portion of the tumor. these will not change. these will not get worse, they will not come back to life and be cancerous. seriously, knowing that there's part of that tumor that won't be growing was the best news we've heard all week. this doesn't change his diagnosis, but it's just another little piece that puts him in a good place as he takes this journey. we are still waiting on some genetic information from the tumor that we should get this week. this includes if it has a special protein that would require a specific medicine down the road, and if it has a protein that makes it harder to treat. after all of that, we talked about his busted central line. im pretty sure this was my fault, because i had to change it on monday alone and i didn't let it dry enough. it got irritated and itchy, and he ended up budging it out of place inside. its gonna have to be fixed, but thankfully she said this can wait until before his second round starts. which is when we got the ok to LEAVE! after a dressing change (shoutout to the nurses that helped and im sorry i put two pairs of pants on his dressing and made it way more difficult than it needed to be) we went to RMH, packed up our stuff, and got the heck out of indy! when we got home, we had everyone from the farm waiting in our driveway (waving the wrong way, at that) the porch was decorated with balloons and riley was so excited. he got to see all his family and wave (from a distance!) when we got inside, his kitties came right up to him, and he ran around the house to see all his fans and play with all of his toys. he quickly asked for night night, though, and he is off to sleep. (not without a panic call to the on call because we thought he had a fever 😅 )this weekend we can't wait to just exist at home. due to his ANC being a complete 0, even the slightest sneeze from someone could throw him in the ICU. his body cannot fight anything right now. this happens after every chemo round for a few days. so we unfortunately won't have visitors this weekend. not in person, anyway. we may do through the window covid style hellos 😂 so, here's the schedule for the next 12 days: saturday - wednesday: be normal human beings again thursday: memorial for his weekly bloodwork (and possible transfusions depending on his #s) friday - tuesday or wednesday: be normal and get ready for round 2then we will go down to IU north, do a pet scan. stay overnight somewhere, then the next day, go into riley for his line fix, then be admitted for round 2! WHEW. can you tell i have access to a laptop? thank you to everyone for their support these last two weeks. we have a long way to go, and not every update will feel as good writing. but we're in a good place right now, and we hope to stay that way. this week we want a normal life, and no fevers! <3 


August 18, 2022

we came to get his blood work done and his injection for tomorrow. unfortunately; his central line is messed up. they can flush, but can't pull. so they can't get blood. they were able to get him ready for his MIBG scan tomorrow, so that's nice. but they're doing blood through his veins now so i had to step out. i can't handle him screaming "all done". the one time i tried i had to leave. maybe that makes me weak. i know i'm being weaker than him because he's the strongest one here. 


the line is up against the side of the blood vessel, so when they suck, it kind of creates a block. his doctor is going to come up with w plan. if i had to guess, we will get admitted tomorrow for a few days. i hope i'm wrong. i just want to take him home for a few days. we haven't been home since august 4th. 


ive told neil that this journey is going to be a lot of one step forward, two steps back. i guess i need to remind myself of that, too. 


August 16, 2022

tuesday was the first normal day the three of us have had in almost two weeks. first, we all slept in the DARK, and quiet, and didn't have nurses waking him up every 4 hours. we slept in, we had breakfast (mostly, anyway. he's struggling to eat) then we played outside with the therapy dog mac, and then we went to target!!! and after nap time, grandma, gaga, and grandpa took him and neil and i went to DINNER. at st elmo's. we were not dressed fancy, but it was good. we used scooters to get back to the house, and that was fun. it was like austin. reminded me of when things weren't terrible. 


but this is our new normal now, and we are doing good. we will get used to it! 


wednesday is just another free day. thursday he has blood work and injections, and friday he has a scan and we meet with the doc. after that, we're going HOME. 


August 15, 2022

As we watched the little girl with the squeaky shoes be discharged for the final time, I could barely hold back my tears thinking about how we are just starting this journey, while she is just finishing hers.  It gives me hope that this will be us in a year and a half, and I understand that we have to hold onto that hope if we are to get through this.  I know it’s going to be tough, but we’ve got this.  We’ve got each other, and we’ve got our families behind us.


Thank you everyone for all the support!


August 15, 2022

we have finished cycle 1 and have bounced out that hospital! 


sadly, we can't go home. well, we could, but it's just easier to relax here until his scan this week. so we're staying at the RMH here and just enjoying letting him be normal for awhile. he will have an injection and blood work thursday, and an MIBG scan friday. this scan will help us see just how much cancer there is (in his bones, and whether there are masses anywhere else ((there weren't last week so hopefully that stays the same))) 


the grandmas are down here in the RV so we will be able to visit and be normal for a bit. neil and i are going out to dinner tomorrow while they hang out with him, so that'll be nice. 


we had a lot of information thrown at us today. what to do in an emergency and how often we will probably be in the hospital. fevers used to be a tylenol and done sort of thing. now they're emergencies. 


we also changed his dressing today. i did. neil and the nurse held him down. he hates the mask more than anything (we kept asking if he was an anti-masker) but me ruining to sterile pairs of gloves wasn't helping. 


there was a little girl on our floor with squeaky shoes. she had an end of treatment celebration today. riley was clapping and dancing. i, on the other hand, was a mess. i know they've had a hard road, and i'm so happy for them. i just hope that'll be us, too. it seems so far away. i know, i'm trying to be optimistic. think of each day and not ahead. but damn it's hard. 


currently he's tearing around the RMH like a madman now that he's free from his IV pole. now starts the worrying every second of him pulling his line out 😅 


thank you to everyone rooting for this little guy. anxious to start the next cycle, but want time to slow down so we can enjoy normalcy now. 


or at least, this new normal. 


August 13, 2022

treatment #3 is done! it started around 5pm today, which means tomorrow it'll be around 1pm. Hoping to be ready to go to the RMH on monday and be normal for a few days!! 


his hgb is 7.1, so he will be getting a blood transfusion tomorrow. today he's been happy, but a little run down. but still his crazy little self! just a little more sleepy. 


i can't believe it's been a week since we went to the ER. it feels like it's been a month. definitely been the longest week of our lives. 


grateful for everyone we have in our village who has been with us, thinking of us, and doing things for us back at home. we've got people thinking of us all around the world, and we can feel it! 


the nurses here are angels, and they prove that daily. today we've had lidia, who has been awesome in letting him play with her pager. we've been told that during their daily floor meetings, he is known as the kid who loves buttons. 🙃😂


August 12, 2022

riley's first round of chemo went well! he slept through it and has been completely fine today. if anything, he's been insane. very grumpy, or very excited and happy. he's eaten well, and is now relaxing and about to take a nap. 


his chemo is going to be moved up a couple hours each day, and they are hoping to have it finished by monday. if all goes well, we will be discharged to the ronald mcdonald house across the street. we will be close, but be able to be out of a hospital and free to go to parks and run and play without a pole attached to him. then next thursday, we will come in for some outpatient stuff, as well as friday, and then we should be able to come home until the 1st of september when we'd start cycle 2!


hopefully the rest of his treatment goes well and we can get out of here for a little bit! 


August 11, 2022

today, riley was officially diagnosed with high risk neuroblastoma. and tonight, he starts his first round of chemotherapy. we're hoping he responds well to this first section of treatment. over the next five/six months, he will go through five cycles of chemo, stem cell collection, and tumor removal surgery. and that's just section one out of a possible 4.

we're hoping it responds well to chemo and shrinks it good so the surgery can get the rest out. but that's awhile away, we still have four cycles before that. but tonight is day 1. a week ago we were convinced he was doing better and had beat whatever virus he was dealing with. and now, we're about to start treatment for one of the more aggressive childhood cancers. life can change drastically in an instant, so please live each day to the fullest!

we are ready to fight this thing! riley is tough and cancer messed with the wrong toddler! #Beanstrong


August 11, 2022

it's 9pm, and in an hour, riley will start his first round of chemo. he's playing on my ipad, which was something we swore wouldn't happen until he was three. i guess having cancer gives you some perks. 😅 


it's still hard to wrap our heads around the fact that he's got cancer. that he's got this brand (brand? that's probably not right lol) of cancer. you always hear about stories and think "wow, i couldn't even imagine. that couldn't be my kid."


but then it is your kid, and you're sitting eating hospital food while he's getting poked for the third time today and it's like you can't even remember what it felt like a week ago when things felt normal. 


but!!! here we are. we have treatment starting, and we are in the best place. his nurses are fantastic, his doctors are wonderful, and the people were meeting as our current neighbors make us not feel so alone. we've had the grandmas down here being awesome helps and giving us the love and support when need when things get hard. not to mention, our awesome support group from afar, from family, to friends, to people we haven't met from all over the world. 


riley's got a long, hard road ahead of him. they aren't sugarcoating it for us, and we won't for you. but if anyone has got this, it's this little dude. (who is currently replaying the beginning of a coco melon video over and over again so much i might lose it) 


thank you to everyone who has been thinking of us and this little dude. if anyones got this, it's him! ❤️


August 9, 2022

a little update now that we've been here a few days: the doctors are pretty sure that we're working with high risk neuroblastoma. not the news we wanted to hear, but we're in the best place for the road ahead. he is doing very well all things considered and does not really even seem sick from the outside. he's been through lots of bloodwork, a blood transfusion, a platelet transfusion, and today, a marrow biopsy, tumor biopsy, and central line placement. now that that's in, we won't have to draw blood from his arms anymore, so no more pokes! we should be starting treatment soon once the official diagnosis comes in through some testing. but he's doing good! the doctors are impressed and the nurses all love him. we're feeling right at home here in 5W. neil and i finally got a room at the RMH so we will have a bed to lay in for the first time in almost a week. but things are ok right now. riley's a little warrior! #beanstrong


August 9, 2022

"I figured now that we know, everyone who has been worried and following should, too. since thursday, we have been on a rollercoaster of up and downs. first, we thought he had a virus he couldn't shake after a week of fever. then we spent 24 hours thinking that riley had leukemia. today we found out he didn't, and that he had a bad case of mono. they wanted to do a CT scan just to cover all our bases. and unfortunately, the floor dropped out from under us. riley has a mass behind his spleen. it's 10-15cm big. thankfully, it has not spread. he is going to be taken down to riley in indy tomorrow to get this thing looked at and figure out what it is and where we go from here. this kid does not deserve this, but he is the bravest little guy i've ever seen. he's got this. and we've got this."

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