Brief update: Ella and co. went home yesterday — Hooray! They haven’t decided when her next admission will be, but we might find that out tomorrow. Round 5 is up next and could take a full three weeks.
Ella is doing well. She’s tolerating her tube feeds at full speed without belly pain and even eating a tiny bit. Keep the love and prayers coming!
Update, directly from Joe:
The doctors just rounded after a semi-eventful evening. While we are in the hospital, Ella has her blood pressure and temperature taken every four hours, around-the-clock. Since our admission on Monday, Ella has had random, unexplained low blood pressures. Her BPs will be normal, normal, normal, low, normal, etc. All this came to a head last night when she had three low BPs in a row. The doctor ended up drawing blood cultures (to check for bacteria in the blood) and a lactic acid level (all looking for sepsis or bacteria in the bloodstream). With her pneumatosis, her bowel is at risk of perforation and this would release bacteria into her gut/blood and she would become “septic.” This can present with low pressures as an early symptom, hence the worry last night. Ella’s blood cultures are in the lab and will be monitored for any bacteria growth (so far, too early to tell). Ella’s lactic acid level (another blood draw, if elevated can mean sepsis) came back totally normal. The doctors agree that she does not look “clinically” sick, but we worry that she just isn’t being herself…something is off. The doctors are being cautious because sepsis is a very serious thing if not caught early enough (patients can end up in the ICU on multiple medications through the IV and even worse, it can be fatal). Ella doesn’t look to be going down that road, but we all want to find the reason behind her strange low blood pressures. This afternoon, Ella had another abdominal X-ray to check on the status of this air in her belly (the pneumatosis) AAAANNNNDDD, it has resolved! Her tube feedings were restarted at the slowest possible rate and will hopefully be increased as, we pray, she tolerates them (meaning no pain). So, best case scenario? We could be discharged home tomorrow, but most likely we will stay until Saturday. Once discharged, we will be home for about one week to let Ella’s bowels heal and then will come right back for chemo round #5 of 6. So as of now, Ella has restarted her tube feeds and we hope to get out of here in the next 24-48 hours. As for the strange low BPs? We have no idea. We may not get an answer to why it has been happening. This is so frustrating, but we are blessed that Ella is getting better and we can hopefully get a move on with treatments.
For everyone praying for us and Ella, please add someone else to your prayers. Since this nightmare began, we had not met anyone in quite the same situation as us. All of the people we had met that had children with Medulloblastoma, were older than Ella and had received radiation (the best treatment for the medullo). We unfortunately met another family facing similar circumstances. Joe is a boy that is about 3.5 months older than Ella and is also battling Medulloblastoma. It is terrible that another child is battling the same thing, but sadly, it is nice to meet others that understand what we are going through (we can gripe about the same things and we totally understand). Strength in numbers, right? Please add Joe and his awesome family to your prayers. You can follow along with Joe’s journey here: http://www.caringbridge.org/visit/josephludwikoski
Thank you, everyone, for the continued prayers and we hope the next update will be about Ella returning home!
Today’s update directly from Joe:
Soooooooo, bad news….Ella has been admitted to the hospital again. Sarah and Ella went to clinic yesterday and Ella was having what we thought were gas pains. This had happened during her last admission, so we treated it like before, but it wasn’t getting better. Poor girl had an X-ray that revealed pneumatosis intestinalis (gas trapped within the actual lining of her bowels). If left untreated, Ella’s bowel could possibly end in perforation which could mean Ella would end up with an ostomy or worse, it could even be fatal. This is unfortunate, but God blessed us with catching it early. So, Ella has been admitted for bowel rest (no food or drinks, just ice chips and sips of water), and repeat X-rays every other day to see if there’s healing. Please say prayers for Ella. She’s tough, but this was an unseen setback (pushing back her next round of chemo).
To add to this: Ella has been repeatedly asking for popsicles, suckers, and apple juice. UPDATE: Doctor just rounded on Ella AAAAAANNNNNDDDD, Ella is allowed to have popsicles and suckers today! They want to see how she tolerates just that small amount of liquid in her belly before introducing anything else into her gut. If she tolerates these things today and her X-ray is better tomorrow (less gas seen), they may start some medications through her nasogastric tube tomorrow and maybe even a small amount of tube feeds in the next day or so. It is small progress, but still progress. So, Ella has had no more pain, and she is allowed some clear liquids which she is tolerating so far. The doctors think, best case scenario, that maybe we could start chemo again in about a week or so. So, her treatment schedule wouldn’t be bumped too far off schedule, but of course, we need to be conservative and not do things too early and cause more harm just because we’re anxious to get things going. This chick has setbacks, but she still gets over them quickly. Either way, she’s a rockstar and she crushes everything in her path!
Ella is loving being home (and playing with her own toys), which is good because she can’t really leave the house. If she does leave, she’s required to wear a mask. (She’s been great about wearing the mask since Halloween, when the nurses told her that she had to wear one to get candy and toys).
Ella’s weakened immune system also means that Sarah and Joe have to keep their very clean house extra clean. They hired a cleaning crew and got an air purifier. It seems there are a lot of rules and it’s a bit overwhelming. They can’t even do the cleaning with Ella in the room, and as you probably know by now, Ella HATES missing out on things. But overall, she’s been doing well at home, except for some stomach issues.
Two more rounds to go. Keep it up Ella!
So serious.
“I’m a cowgirl!” – Ella Tosch
Clinic visit
Lazy Sunday.
Early morning painting session.
Crushing Cancer, Round 4: Complete!
Ella and co. are home for the next two weeks!
Ella had her hearing tested a couple days ago, and she is showing some deficits with high pitch sounds (a result of her chemo). Aside from that, all is looking OK. She was asked to do some tasks that the doctors normally reserve for three year olds, and Ella kicked butt. Yesterday, her kidneys were also tested and Sarah and Joe are still waiting on those results.
Another reason Ella got to go home (in addition to being awesome) is that Sarah and Joe can take over a lot of what the nurses have been doing. Since Sarah has been doing this for a while now, and of course, Joe does this for a living, they are able to properly give Ella her medication and flush her Hickman. It also seems that living close by helps.
Ella no longer needs to take her nausea meds and has even started nibbling on solid food. Her blood counts are totally normal and she seems to be feeling pretty well. The nurses say Ella is only experiencing mild symptoms. Apparently some children get really sick during this process. Ella has two more rounds to go, and we’re hopeful that she continues to crush it. Amazing little lady!
Knees and Toes!
Come on Dadda!
So happy to be home!
Ella received a package yesterday and immediately started kissing the stuffed animal.
Super day for Ella. Her absolute neutrophil count (ANC) is at 1040. They typically want it to be at 500 for her to be discharged. Crushing it. Neutrophils are some of the first white blood cells to fight infection, so they’re pretty important little guys. (As a precaution, though, Ella was not discharged today. They want it to stay up for a few days to make sure it isn’t a “false number” and that her bone marrow is truly making cells again).
She hasn’t had a fever for a few days, and hasn’t thrown up in over 24 hours. The doctors are pumped about her progress and hope to discharge Ella and co. by Tuesday. (The original plan was to be discharged between Wednesday and Friday). Obviously, Ella is the best at everything.
She’s been quite active today. Playing, walking, laughing, and eating suckers two at a time. She’s also had visits from grandma and grandpa Trost and aunt Barb. She got to see aunts Libby, Sally, and Debbie lately. SO popular!
Keep it up Ella!
Chugga chugga chugga…
A little suspicious of biking…
Fun with the nurses.
Superman, SuperElla.
Just chillin with Batman.
Hi guys!
Because 2 suckers > 1 sucker.
Sometimes I just need to kick back and relax, ya know?
Ella has had some interesting days. She was on isolation today because of a possible bowel infection. (Luckily this was just ruled out, and she is free to roam again).
Her main issue lately has been her feeds. Since she isn’t eating, they are trying to give her 100% of her calories through her nasogastric tube as a 24hour, constant feed. Poor girl hasn’t been able to tolerate that much tube feed and has had three bouts of vomiting. They are going to try 18hour feeds and give her 6 hours of “rest” at night hoping it will help her tolerate them and give her the calories she needs.
But beyond the not tolerating her feeds and this bowel infection “scare,” she’s rocking this. She has been playing like normal Ella and it amazes everyone because a lot of kids get lethargic and stay in bed when their blood counts are “in the toilet”. Ella hasn’t really skipped a beat this round.
Sarah and Joe just have to wait for Ella’s white blood cells to rebound, and then they can go home and hopefully enjoy some normalcy. (And round 4 will be in the books)! The doctors think that her counts should start to come up by the end of the week or early next week.
In other superstar news, Ella booked another photoshoot last week. This time for a brochure on the bone marrow transplant process. The people love her!
Also, Ella was Ariel for Halloween. Photos below!
Positively Ella 