Stella's Story (unabridged)
Updated: Oct 27, 2021
This is Stella's story, the long version. Because in all honesty, this road is long. This is not a succinct process that we breeze through and move on to the next thing. Having a child with cancer creates a whole new path for an entire family, this is our path. At the top is the most recent update we can give you, and the journey works backwards as you scroll down the page. If you would like the overview of Stella's journey you can visit this page, and if you would like a specific list of ways you can help please see here.
Monday October 25, 2021
After talking to both MD Anderson and Children's Mercy and weighing all our options, we have decided to do whole brain radiation down at MD Anderson. This seems like the best option at this point. Stella, Mom, and Aunt Gina will fly down to Houston on Tuesday to have a simulation for radiation and will return Wednesday night. We will be home for a weekoor two before returning too Houston. We will be down there for 4-6 weeks depending on what her radiation oncologist decides. Please send all your best prayers, love, vibes, and energy to the medical team.
Wednesday October 16, 2021
After the rental car breaking down (luckily, it only cost an hour to get a new one and get back on the raod). The whle family made it to Disney safely! We have done Disneyworld open to close one day, and exhausted both kids. Day 2 was Universal. Harry Potter! Michael was chosen by Ollivander for his wand, enjoyed some butterbeer, and was happier for some "big kid" rides as well.
Thursday October 7, 2021
Stella and Mom made it home! Such a long drive but she is a rockstar!
Now on to the next adventure... Our family has been graciously granted an all expense paid trip to Disney World by Elle Foundation!! This foundation is specifically for kids with relapsed cancer. They have coordinated everything and we leave on Saturday!!! We are super excited and are all first timers so it will be such an experience!
With that being said we wanted to assure everyone that any and all money that has been donated to Stella's medical fund will be used foor just that; her medical bills and care. We will not be using ANY of this money during our Disney trip.
If anyone has any questions or would like to reach out please feel free. We are forever grateful for the support everyone has shown our family yet again. We truly are in a wonderful community of people, family, and friends.
PS- Due to Covid we are driving. Please pray for our sanity.
Tuesday October 5, 2021
Stella had an MRI and lumbar puncture at MD Anderson today so the doctors can develop a battle plan. We will be driving back to Kansas City today. Please send all the prayers, good vibes, and positive thought you can muster to our girl and her cancer team.
Sunday October 3, 2021
Stella and Mom made it to Houston! Covid test tomorrow and other tests Tuesday AM. She is just happy to be out of the car and having some Sonic.
Tuesday September 28, 2021
Yesterday morning we were headed down to MD Anderson for some tests. This morning we are headed back home as they began rescheduling our appointments about 3pm yesterday. We were just north of Dallas so decided to stay the night. Now we are scheduled for appointments next Tuesday... Let's hope it goes smoother next week....
Thursday September 16, 2021
A few weeks ago Stella had her routine followup scans. Unfortunately during these scans we found 2 new tumors. We have been in touch with both Children's Mercy and MD Anderson and are waiting for a "plan" at this point. We haven't updated anyone up until now, because we really don't know much of what our next steps will look like. Once we know more we will pass it along. We are asking for thoughts, prayers, vibes, juju, whatever it is you got!!
Wednesday June 16, 2021
Today is scan day. If you have an extra prayer please pass one along.
Thursday March 11, 2021
Well after lots of driving and waiting we have results! Scans are stable and spinal tap was all clear! Best news!! We will go back down for scans in 3 months. Thank you everyone for your thoughts, prayers, good vibes, etc. They work miracles!!
Sunday March 7, 2021
Houston bound for a few days of tests and scans. Don't miss this drive- we are all done with being in the car.
Friday February 19, 2021
Getting read to rock some chemo!
Tuesday January 12, 2021
After some technical issues and lots of waiting we have heard back from MD Anderson on Stella's scans. While there was some "enhancements" they believe it is just post operative changes (scar tissue, etc.). They presented it to the tumor board yesterday and they were in agreement with what Stella's oncologist, neurosurgeon, and radiologist thought. So as of now we will continue with our last two treatments, and then go down to Houston for an MRI and spinal tap.
Tuesday December 29, 2020
Mid treatment MRI tomorrow for sassy pants. We finished up chemo this week then just 2 more rounds left!!
Wednesday September 30, 2020
On this last day of Childhood Cancer Awareness Month here are a few of Stella's stats:
8 surgeries (2 of them brain)
19 spinal taps
183 overnight hospital stays
Over 300 clinic visits
Many children are even higher.
Friday September 18, 2020
Scans were all clear!
Wednesday September 16, 2020
Scheduled scan day! Just mid treatment scans to see how everything is looking. Only 7 more chemos to go after this!
Thursday July 30, 3030
Day 3 of chemo and we are getting stir crazy. Thank goodness these Snapchat filters will keep her busy for a while.
Friday May 8, 2020
Stella had an MRI this past week, all came back totally clear!!
Sunday March 15, 2020
This girl can't catch a break! Last Sunday we were admitted to Children's Mercy for a fever. After our mandatory 48 hour stay and 24 hour fever free we went home on Tuesday. Then tonight she came back down with another fever so we are back for another 48 hours at least. Hopefully fever stays away and we can go home Tuesday evening.
After Tylenol kicked in she perked up a bit, hopefully it stays that way!
Saturday March 7, 2020
Well a big week! Tuesday Stella finished her proton therapy treatments. She "rang" the gong (or lack thereof). We headed home Tuesday and have enjoyed a quiet week at home. We luckily can finish chemo here at Children's Mercy and will just need to travel to Houston for scans and follow up. That should be about every 3 months or so with the first one starting at the end of this month.
Monday February 24, 2020
Once again, I am struggling for words of thanks! This time its our Kansas City Royals! I arrived at home from work today and found a box to Stella from the Royals. The Royals sent several items of Royals memorabilia to both Stella and Michael!!
The Kansas City Royals are amazing!! How fortunate are we all to live in a city where both professional sports teams are so involved in the community. I love being a Royals fan and a Chiefs fan!!
Both Stella and Michael are #raisedroyal and we are so thankful to the Royals organization for their gifts and thoughtfulness- truly what a first class organization! Thank you to everyone for their love and care as Stella fights this heinous disease. All of the support from our community is beyond what we could ever ask for. We love you all!
Sunday February 19, 2020
I honestly cannot find the words to use to express my gratitude, but I'm going to do my best. I got home from work today to find a box on our front porch. It was addressed to Stella and was from the Kansas City Chiefs. I never imagined I would find what I did inside. A football signed by none other than SuperBowl MVP Patrick Mahomes!!!! A letter from Mr. Clark Hunt, and a chiefs teddy bear all for our Stella!!!!
Sports hold a very special place in our household as they are a very happy and welcome escape from the harsh reality we are facing. The Kansas City Chiefs have brought so much joy to our family and our city!! Thank you from the bottom of our hearts Mr. Mahomes and Mr. Hunt- and everyone with the Chiefs organization. Truly, a one of a kind- first class organization. We are so proud to have always been a part of the Kingdom.
I would be remiss if I did not also thank the Kingdom itself for sharing our original post about Stella's fight and her love of the Chiefs! God bless you all!
Sunday February 16, 2020
The boys got down here Thursday night (its been a month since we have seen each other!) and on Friday Stella was finally discharged from the hospital (after 2 weeks). It was a great weekend, but they headed back home about 5 this evening. They will be back in 2 weeks, and if everything goes perfect we can head home on the 2nd or 3rd of March. Stella is feeling good and happy to be out of the hospital for a few days at least. If she makes counts we will be back in for another round of chemo on Tuesday.
Tuesday February 11, 2020
Had some of the Houston Texans stop by for a visit today. They gave Stella a basket of goodies and a signed football. Once they found out we were from KC they told her to sell the ball, and get one from Mahomes and Kelce.
Friday January 31, 2020
Well we had a good run, but came down with a fever this afternoon. Got to 104, but finally came down about 7 this evening. Hopefully this is short lived and not a 2 week stay like we have had in the past. Hoping tomorrow she is feeling better after a (hopeful) good night's sleep.
Thursday January 23, 2020
Wow! What a day! Stella was spoiled by all the wonderful staff at both MD hospital and the proton center! Since we are inpatient for chemo we are transported each day by ambulance over to the proton center. The team who took us today went and got Stella balloons, and a few small gifts while for her appointment to finish. She got not one, not two, but FOUR cakes from everyone! And lots of singing and gifts. She ended the night with karaoke night (even sang 2 songs!) and some snuggles with mom. Thank you everyone for all your birthday wishes. She enjoyed hearing all of them!
Tuesday January 21, 2020
One radiation treatment down- 29 more to go.
Saturday January 11, 2020
After a week of appointments we have a plan. We will begin target proton therapy next Tuesday the 21st. We will have one treatment then a few days off as we have another round of chemo. Then start back up with radiation on the 27th. We will have a total of 30 treatments. So since we have a week of Dad flew down, and we headed home yesterday surprising Bubba. We will be back down to Houston next Saturday for 6-8 weeks.
Side note: driving in this awful weather is still better than driving in Houston traffic.
Sunday January 5, 2020
Well yesterday we made the journey back to Houston. Got in last night. Today was unpacking, store running, and enjoying every bit of the 73 degree day outside. Boys just left to head back home, and tomorrow brings a week full of appointments. Hopefully by the end of the week we will have an idea of what the next steps regarding radiation will be. Stella is happy to be back at the "hotel" at least so that makes it all a little easier.
Wednesday December 18, 2019
I'm going to Kansas City, Kansas City here I come!
Thursday December 12, 2019
Stella had an MRI today. It was a scheduled one to see where we were at in regards to treatment, and how everything was looking. The MRI showed no evidence of a tumor at all! Also her blood clot has dissolved so we no longer need to use blood thinners (shots) twice a day! We are headed back to Kansas City sometime late next week, and will be home for the week of Christmas and New Years. We will head back down to Houston after to begin prepping for radiation.
Monday December 9, 2019
Busy day! Even though counts are low still she was feeling pretty good! We had a super hero holiday party where we got some new toys, cookies, and face painting! We went for a nice long walk and played with playdoh for most of the afternoon. Bingo tonight and hopefully she sleeps well.
Sunday December 8, 2019
Still inpatient. Not feeling the best yet as white counts are still low. She gets little boosts of energy here and there. Keep busy by doing our favorite- art! This girl loves to paint and color.
Sunday December 1, 2019
We just can't stay out of this place. Fever of 103 about 5:30 tonight and pink eye in both eyes. UGGGGG. Another few days in the hospital for this girl. Boys headed back home tonight also. It was a great 5 days. They will be back in 2 weeks, then the countdown to be home for Christmas.
Monday November 25, 2019
2nd round of inpatient chemo done! We were discharged today and have a few appointments to go back to tomorrow. Hopefully fevers stay away this time, and we can be out for a while. Boys get into town tomorrow night, and we have 5 days together! Can't wait! Also, she actually GAINED 2 pounds this week!
Friday November 22, 2019
We had music therapy, PT, and OT all stop by. Busy morning.
Thursday November 21, 2019
Well luckily we made counts today. We were admitted and began receiving chemo this evening. We will be here until Saturday evening or Sunday morning.
Tuesday November 19, 2019
We were supposed to start our next round of chemo today, but her platelets were not high enough. We are "home" for a few days, and will try again Thursday. Tomorrow is supposed to be 80 degrees (sorry KC friends), so we may get to the zoo again and enjoy the day.
Sunday November 17, 2019
After 2 weeks of inpatient care, Friday we were finally discharged from MD Anderson. The boys were here this weekend so it was perfect timing. Satuday was spent just hanging out, and today we were able to get to the zoo for a while and enjoy the perfect weather. Ended the evening with a visit and delish dinner with "the nice people" (as Stella calls them). Tuesday we should be back in for our next round of chemo.
Sunday November 10, 2019
Still inpatient but we have finally narrowed down the source of the fevers. After a CT scan late Saturday evening we found two small spots on her lungs. These are fungal therefore easily treatable with antifungal meds. I could tell today she felt the best she has in weeks. We were walking, and even ate pretty decent. Not sure where we go from here, but we are just happy she is feeling better.
Tuesday November 5, 2019
We are still in the hospital. She keeps getting fevers off and on. Hopefully tonight maybe we can make it all night without a fever. We also still have no white cell count which we need to have that showing up before they lt us leave. Also this weekend she developed mouth sores so lots of pain and drooling. We have gotten pain mostly under control, I believe, which is a relief. Supposed to have our next inpatient chemo next week... We will see.
Sunday November 2, 2019
Well the boys are headed home. We had a good weekend being together. Now the countdown for the next one. Stella is still inpatient at the hospital. We have been fever free, but need her white cell count to come up before they send her home. Also today we discovered she has mouth sores. We are not sure if that will affect anything or not. Hopefully tomorrow we will have a better plan of what the next few days will look like.
Friday November 1, 2019
Unfortunately Stellas was still getting fevers off and on today. So we are still in the hospital. Bubba and Dad got to Houston tonight, and Stella and mom are both so happy they are here! Dad is with Stella tonight so Mom can spend some time with Bubba, and get a full nights sleep.
Thursday October 31, 2019
Well unfortunately Stella developed a fever this afternoon. This means at least 48 hours admitted to the hospital. She needs to show her numbers are on the upward trend and be fever free for 24 hours. Dad and Bubba are headed down to Houston tomorrow afternoon so we have something to look forward to.
Monday October 27, 2019
Finally discharged today and at the "hotel" as Stella calls it. She requested french fries, and is chowing down. We are happy to be "home" and ready to watch our Chiefs tonight!
Saturday October 26, 2019
We "found" donkey. All is right in our world now.
Tuesday October 22, 2019
Full day of appointments then admitted late this afternoon. Spinal chemo is done and now we have 4 days of inpatient chemo to do. She is tired but still pretty happy tonight. Worst part of the day is we lost our beloved donkey. Found some similar online, now to distract her until it gets here and hope she doesn't realize it looks different.
Sunday October 20, 2019
Well we are in Houston settled into the apartment. Enjoying both the boys tonight as they leave Tuesday to head back home.
Friday October 11, 2019
Well we are finally all home together! Our plan was changed before we left Houston. We will be starting with 6 weeks of chemo before the 6 weeks of radiation now. They want to get Stella as close to her 3rd birthday as possible before radiation because of long term side effects. While we are happy they are looking out for Stella's best interest his does add an extra 2 or 3 months to our journey. We will be leaving next Saturday to head to Texas, and will be starting the week with tests before starting some inpatient chemo.
Tuesday October 8, 2019
Well we were cleared to go home! We have a few appointments tomorrow, then will head back to Kansas City after they are done. We should be home for a week or so before heading back down to start radiation.
Saturday October 5, 2019
Yesterday Stella was finally discharged from the hospital. We have a lot of appointments the first half of next week, but hopefully her neurologist will clear us to travel home after we meet with him. We will be home for about a week and a half before traveling back down to begin our 6 week proton therapy on October 28th.
She is doing pretty well. Slowly she is eating a bit more, walking a bit more, etc. In typical Stella fashion she isn't a fan of doing what she doesn't want to do.
Monday September 30, 2019
Long few days. While we were hopeful we would get discharged over the weekend, we had a few bumps come along. Stella's MRI on Thursday after surgery showed she has a blood clot on one of the main arteries to her brain. We have watched her since then and had a follow up MRI today. That showed nothing has changed so we just need to be sure we keep her well hydrated and hope it dissolves over time.
Tomorrow we will get her port placed then be discharged from the children's hospital. Due to the blood clot her neurologist wanted us to stay close for another week or so. Sounds like next Tuesday we may be able to head back to Kansas City. In the meantime we are happy to be leaving the hospital tomorrow, and will get as many appointments done as we can while we are down here in preparation for proton therapy.
Thursday September 26, 2019
Pretty uneventful day. Lots of sleeping. We did get moved out of ICU which is nice. She is doing as well as expected.
Wednesday September 25, 2019
Surgery went well. She is recovering now. They were able to get 2 full tumors and part of the 3rd. The 3rd one was attached to a blood vessel so complete resection was impossible. We are still happy with results, and happy to have this part behind us.
Tuesday September 17, 2019
A long day but got all the appointments done in one day. We will be headed back home tomorrow for about a week before we come back down next Tuesday. We are schedule for surgery next Wednesday the 25th. After that we will have some recovery time before starting proton therapy.
Wednesday September 11, 2019
We are so humbled and blessed for all the support and kind words we have received. We can never thank everyone enough for all you have done. We are schedule to leave Monday for Texas, and will start our appointments Tuesday morning.
Tuesday September 10, 2019
Stella had scans last week. Unfortunately these scans came back with 3 new tumors growing. After much thought we have decided to continue treatment at MD Anderson in Houston, Texas. Many people have asked how they can help or what we need. We are traveling to MD Anderson next week, and will have travel expenses. We are opening up our Go Fund Me again as well as the Great Southern Bank account for Stella. This journey will be a long once, and once we know more we will keep everyone updated on ways to help. As always we welcome any and all prayers.
Great Southern Bank
Stella Henry Medical Account
300 SW Ward Road
Lees Summit, MO 64081
Friday July 19, 2019
Say an extra prayer for Stella. 6 month post treatment MRI today.
Ok. So all good overall. There is a small spot right along her incision line that they believe is scar tissue, but obviously we need to watch anything. They are not very worried because she looked good and her labs have all come up. He said normally something would be off. He also said this is pretty common as stuff settles and heals scar tissue will appear. Since its right along the incision line he feels like that's this situation. As of now nothing changes and we go back at the end of September or beginning of October.
Tuesday April 16, 2019
At Children's Mercy for our first follow up scan. If you have any extra prayers we would appreciate some.
MRI totally clear!!
Friday March 15, 2019
Big day today!! Stella's numbers looks so good from last week that they went ahead and pulled her line. After 9 months no more tubes sticking out of her or having to flush a line twice a day. Now we finally feel like we are "done". This also means not having to go to the doctor 3 times a week, or even once a week for no! It also means A REAL BATH!!
Thursday January 31, 2019
GOING HOME TODAY!!!
Monday January 28, 2019
We have been trying antibiotics through IV and also locked into her line/port. Unfortunately these were unsuccessful and she kept testing positive for bacterial infection. They believe it was just in the line so this morning we took her down, and they will pull the line from her chest and put a temporary one in her arm. We are hopeful we can get away with using this for a few weeks and not have to put another one in her chest since we are so close to being done. Also since she was already being put under anesthesia they decided to go ahead with her MRI.
MRI totally clear!!!
Friday January 25, 2019
Stella spiked a fever Wednesday night and tested positive for a bacterial infection. Today's tests finally came back negative for bacteria so antibiotics are working. Unfortunately, antibiotics have to be inpatient and are for 10-15 days. So we have another 10-15 days from today in the hospital.
Thursday January 17, 2019
Well lots of lasts! Last chemo and transplant are officially done! We still have a while in the hospital because she is so immunocompromised, but now we can see the end! Luckily no sickness and lots of energy this past week. Still eating pretty well also.
Monday January 7, 2019
Well its the time we have waited fo! We will be admitted on Wednesday the 9th for our LAST round of chemo and transplant!!! This will mean another 3-4 weeks in the hospital but its our last one!!!
Thursday December 13, 2018
After 23 days we have busted out!! Happy to be home and playing with her stuff!
Friday November 30, 2018
Pretty good week. Stem cell recovery and chemo are done for this round. Only one more to go!! As of now it sounds like we might be lucky enough to be home on Christmas. Keeping our fingers crossed this stays true.
Thursday November 22, 2018
We may be stuck in the hospital but at least we are all together. Michael and Mom are watching Harry Potter while Daddy and Stella sleep. Happy turkey day everyone.
Tuesday November 13, 2018
We went into the doctor today for pre admit. While her numbers were good, they just were not good enough to be admitted to start chemo this week. So we will be home one more weekend, and try again for next Wednesday to start our second round.
Saturday November 3, 2018
After 18 days in the hospital and one round of transplant done we are all finally home for a week! Two more rounds to go then done!!
Friday October 26, 2018
Yesterday was kinda rough, just not feeling well. Some balloons and a visit from Daddy and Bubba made it better! Today we have been up playing lots, happy to be feeling better.
Friday October 19, 2018
Well her chemo is done, we have transplant on Monday. She is such a trooper. Still eating and drinking well and in good spirits. Mom came home today while Dad gets the weekend shift.
Friday September 28, 2018
We left the hospital! So great news... no residual tumor... no signs of regrowth... no signs of anything for Miss Stella. Thank you to everyone for helping and praying for her and our family. There is still a long road ahead for this little one with 3 months of chemo left.
Thursday September 27, 2018
MRI is done. Hopefully we will know results later today. They were unable to do the stem cell catheter because her counts were not high enough. So good news is we get to go home later today. Bad news is we come back next week for stem cell recovery.
MRI was totally clear!!
Tuesday September 25, 2018
Feeling better this morning. Just lounging eating her yogurt and watching some Paw Patrol.
Update: she is feeling much much better this evening. Thank you everyone for your prayers! Her white blood cell count is still low so they are pushing everything back until Thursday. Hopefully we get to go home late tomorrow afternoon, then come back Thursday morning for MRI. If her counts are high enough they will do surgery for stem cell catheter then do the draw on Friday. If counts are not high enough we still have MRI, but the draw will be pushed into next week.
Monday September 24, 2018
Well, busy day. Went in to lab work and our numbers were pretty low. They decided to do a transfusion and while we were there developed a fever. So that means automatically admitted for 48 hours. Wednesday we have an MRI and surgery to place her stem cell line again. Then Thursday we try again for more stem cells. Long story short, we are now in until at least Thursday evening.
Friday September 21, 2018
Stella is doing well. We have an MRI scheduled for Wednesday.
Friday September 14, 2018
Round 3 started today. Like a trooper she is doing as well as expected.
Wednesday September 12, 2018
Well good news is after lots of crying and some serious pain meds we are happy to have the tube out of her neck. Bad news is they still didn't get enough stem cells. So we go home today and then come back Friday for round 3 of chemo. Then probably 2 weeks after that we do this whole thing over again to (hopefully) get the rest of the stem cells we need.
Tuesday September 11, 2018
Yesterday we had a small surgery to put another line in. This was to get stem cells/bone marrow for her later treatments. Unfortunately they didn't get as many as they needed so we wil have one more night in the hospital then try again tomorrow.
Monday August 27, 2018
Got to come home tonight! She was doing really well so they let us come home early! Back down tomorrow for an appointment, but everyone will sleep better in their own beds tonight.
Sunday August 26, 2018
Day 3 down! Now we have to hydrate for 24 hours and will get to go home Tuesday. Lots of smiles when big brother came to visit. She even ate a little!!
Saturday August 25, 2018
Little Miss is doing good! Day 2 down. We should be discharged Tuesday morning as long as things stay the same. She is wearing mom and dad out with all her energy.
Friday August 24, 2018
Good morning, I know we have been rather quiet, but generally no news is good news. Today we begin round 2 of inpatient chemo sessions. Please send up some prayers for our little warrior. She is battling hard and is incredibly strong. Thank you everyone for your continuous help and supports, it means more to us than we can ever describe.
Sunday August 12, 2018
We are finally home! She is doing much better and almost back to her sassy self. They did do a platelet and blood tranfusion this evening to help boost her numbers up quicker. Hopefully tomorrow with a day of rest at home we will be back to normal routine.
Friday August 10, 2018
Fever means we get to spend at least 48 hours back at Children's Mercy. Prayers that fever goes and stays away quickly! She is pretty fussy so hoping the antibiotics do their job and her mood will boost.
Saturday August 4, 2018
Still doing well. We won't get to go home until Monday due to the fact that her chemo needs to flush out for 24 hours. That process won't be finished until 11pm tomorrow night. So now home Monday morning. Lots of visitors today which kept us busy. Hopefully she will sleep well tonight.
Friday August 3, 2018
Little girl is such a trooper! She had another successful day today. No appetite but that is to be expected. We at least don't have any throwin up so I look at that as a win. Bags of Fun KC stopped in and she was thrilled with her new toys. They even brought a bag for Michael.
Thursday August 2, 2018
Stella had her first chemo treatment today! Day 1 of chemo went pretty smoothly. No real side effects from today's meds. All I noticed was not as big of an appetite. We still have 2 more days to go though. Stella was happy to have a visitor and for her new sticker book! Thank you to everyone for your support.
Wednesday August 1, 2018
Port is in. All went according to plan. Chemo will start tomorrow and we will be here until Sunday. If all goes well we will be able to go home Sunday afternoon.
Friday July 27, 2018
Spinal tap came back NEGATIVE! That means no tumors in her spinal fluid! Amazing news! Now we are just fighting any small cells that would be left in her brain from tumor or any new growth from surgery. Also means nothing has spread to any other parts of her body! One more hurdle down.
Tuesday July 24, 2018
Spinal tap went pretty well today. They said she didn't even flinch while they were doing it. We will know results tomorrow. She was completely happy the rest of the day and full of energy. This afternoon we got a "Stella sized" backpack to carry all her books, puzzles, and stuffed animals while we are at the hospital. We also got a special care package which made her (and her brothers) day.
Monday July 23, 2018
Thank you to everyone who attended the Rosary for Stella. It was so humbling to see again all the support we have. She has her spinal tap in the morning and I will meet with the doctors one more time before chemo starts.
Friday July 20, 2018
Talked to doctors today. Spinal tap on Tuesday and then her port will be placed on August 1st with 1 round of chemo (we will be doing 3 total) starting that day. After the chemo is done we will be doing an MRI to see if any new growth has occured.
Thursday July 19, 2019
Therapy today, PT says she is doing really well. We will have to go back once a week for 6 weeks, but its so nice to see her up and walking!
Still amazed and humbled by all the support. We appreciate everyone's willingness to help during this time. I have posted below ways you can help as we still have lots of people asking.
Great Southern Bank
150 SE Todd George Pkwy
Lee's Summit, MO 64063
300 SW Ward Rd
Lee's Summit, MO 64081
Tuesday July 17, 2018
We have had a great first day at home. Enjoyed a cake big brother made us, and eating everything in sight. She has been walking on her own quite a bit today also!
Monday July 16, 2018
We are home!!
Sunday July 15, 2018
No new information today. Just enjoyed watching her get the confidence to walk more and more.
Saturday July 14, 2018
Lots of walk today and a cookie made her a happy girl! Getting more confident standing on her own and took more steps today. Hopefully by the end of next week she can be walking on her own again. Still hoping to be discharged on Monday so we can get back to a somewhat normal routine.
Friday July 13, 2018
Stella's surgery for her shunt went perfect. She is in recovery now. We will get to see her soon.
No more tubes/cords!! Yea! Surgery this morning meant lots of sleep today and no therapy. We were able to get out and walk around the hospital tonight, and even went and played in the playroom.
Thursday July 12, 2018
More of the same today, OT and PT. She is feeling more and more like her old self which is good, but makes it a little challenging to keep her entertained. Surgery for her shunt is scheduled for 9:45am tomorrow.
Wednesday July 11, 2018
The tumor they removed is very aggressive looking, and the medical team would like to start chemo as soon as possible. Everyone has been beyond amazing. We are beyond blessed and thankful. People have also been asking how they can help. There are a few options. We have a gofundme page, we also have an account at Great Southern Bank designated to Stella's medical bills. You can go in and make a deposit any time. It will go directly into an account which we (Corey and Ashley) have access to so that we can pay bills as they come in. If you would rather give your help in other ways we will be needing lots of it in the upcoming months. We can always find ways for someone to help. We hope to be home by the middle of next week so that she can keep her recovery from surgery progressing before we start chemo and/or radiation. I will try to post updates regularly as I know everyone is interested in our progress.
More PT and OT today. In typical Stella fashion she was not a fan of someone making her do something she didn't want to do. We will have a shunt put in on Friday, that means another surgery. It will help speed along the recovery so we can focus on our next step which is chemo and/or radiation.
Tuesday July 10, 2018
Did some OT work and made a new friend.
Monday July 9, 2018
Finally out of ICU and on a regular floor! First time we hold to hold her since Thursday.
Sunday July 8, 2018
Getting better every day! We are in the ICU, but hopeful as long as her sodium level stays up we can move to a normal room tomorrow. We ate french fries today and macaroni tonight. She's drinking a lot and loving "bath time". Small victories.
Friday July 6, 2018
We have been at Children's Mercy in Kansas City and had two successful surgeries. They were able to remove all of the tumor (that was the size of a baseball) and it doesn't look to have spread. We don't know yet the steps from
here, but we are hopeful for a full recovery.
Thursday July 5, 2018
Monday July 2, 2018
The "ear infection" saga continues. Stella has been super off balance the past few days. We took her to the doctor to get her ears checked a week ago. The doctor said there was a little fluid but no infection. Is that why she's wobbly? What can we do at home to help her?
Sunday June 17, 2018
It all started with a little wobble. The guessing game of whether your 18 month has an ear infection or not. We've all been there.