January 30, 2015

Crushing Cancer: Round 6 is done! Ella got home on Wednesday and is loving it. (When they walked in the door, Ella said, “We’re home…yeeaaahhhh!”)

She’s playing a ton, sleeping really well (didn’t happen for the 3.5 weeks in the hospital), and she’s even eating! She’s eating a little bit, like bites of apples and blueberries. She even put a piece of ravioli in her mouth tonight (but spit it out)! Huge step that she even attempted to eat it.

Ella’s next big day is her MRI on Tuesday. Send all your love and prayers!

Go Ella Go!

January 26, 2015

Update from Joe tonight!

Since last update, a bit has happened. Ella had her nasogastric tube reinserted on Friday and started her tube feeds. On Friday evening after receiving medication through her tube, Ella got sick and lost her 3rd tube this admission. Seriously?!? Feels like this poor girl is being tortured. Get a tube, lose a tube. We let Ella have Saturday off and she felt pretty good. Since Ella hadn’t gotten sick since Friday evening, Ella got her 4th NG tube (this one better stick) on Sunday.

The nurses are slowly increasing the speed of her tube feeds so that her gut can get used to food again. It’s been at least 2 weeks since anything has been in her belly. Because of how slow this process is, we are scheduled to be at her “goal” speed by tomorrow night.

Ella also had a “scare” with Clostridium Difficile or C.Diff. It’s a bacterial infection of the gut that can cause diarrhea and abdominal pain, and is very contagious (especially for those without an immune system like Ella). Ella was on antibiotics for her eye infection and that can kill the natural flora in her belly and predispose her even more to the C.Diff. She did develop some diarrhea for a day or two and complained of some belly pain. To be safe, the team sent for her stool to be checked for C.Diff. If she had it, it would mean more antibiotics (seems backwards, right?).

Well, after 2 days of being isolated in our room as not spread the infection, Ella is C.Diff NEGATIVE!!! She is free to roam the halls again! So, as long as all goes well with her tube feeds, Ella has leaped every hurdle and is due to be home by Wednesday!!!!!

This round has been our longest at a total of 3.5 weeks in length. Long but who cares, because we don’t plan on being admitted again?!? Ella’s all important MRI is to follow on February 3rd. Please continue all prayers!!!

Let’s go chickie! LYSM!

January 22, 2015

Update directly from Joe today!

So, good news…Ella is no longer on her pain medicine pump! Her blood counts are still great too! Only bad news is that she’s been continuing to get sick every day. The medical team believes that the pain medicine (that she was getting for bone pain from the Neupogen shots meant to stimulate her bones to make white blood cells) is what has been making her sick. So by discontinuing the pump, the hope is that Ella no longer gets sick. So far so good. Ella hasn’t gotten sick since 4am this morning.

Ella’s even in a better mood and taking her first nap in at least 3 days. We think that the pain medicine was making her sick and making her a bit crazy. She hasn’t been sleeping through the nights or taking naps. Hopefully this changes this for the better.

If Ella can go 24 hours without getting sick, the plan is for Ella to have her nasogastric tube reinserted tomorrow. Once she gets her NG tube, her tube feeds will begin at a very slow rate. Her feed rate (speed of the feeds) is increased a bit every 6 hours. This allows her gut to get used to food (she hasn’t had anything in her tummy for about 2 weeks). She has been receiving nutrition through her IV/Hickman line. It takes Ella about 2.5 days to get to her “goal” rate for her feed. Once she is at her goal rate and she isn’t getting sick (“tolerating” her feed), we can go home!!!

If all goes as planned, we’ll be home by Sunday or Monday!!! Next step and most important, is Ella’s MRI on February 3rd. This will show us how successful the treatments have been. Our prayers are for remission….aka cancer FREE!!!!

You got this Ella!

January 16, 2015

Update, directly from Joe:

As of the last update, Ella had started on a pain pump to control abdominal pain. Ella had developed mucositis (a painful inflammation and ulceration of the lining of the GI/digestive tract) from her esophagus down to her butt. The mucositis has caused vomiting, abdominal cramping, diarrhea, and skin breakdown around her butt (to be overly descriptive). The doctor had dosed her pain medication according to her weight (a continuous infusion to help keep her pain at bay), but it happened to be too much for Ella. Ella slept for about two days straight and when she was up (normally only about 15-30 minutes at a time), she was extremely irritable. When she was sleeping, her sleep was very restless as well.

By day two, we pleaded with the doctors to reduce the pain medicine dose with hopes that Ella’s pain would still be controlled, but she would become more herself too. With the dose reduction, Ella “came back to life.” She pepped up and started playing and talking like normal Ella. Her sleep was so much better too. Ella only had the pump for about three days and then they discontinued it. Ella seemed to be pain free and she also hadn’t gotten sick in a few days. It seemed that she turned a corner and was feeling better. On Thursday, Ella’s nurse even removed the PCA (pain medicine) pump from her IV pole to “lighten the load” and make it easier to chase her through the halls.

Well, last night (Thursday) Ella got sick again. It came out of nowhere it seemed. We found reasons to justify it, but then it happened again three hours later. Nausea meds didn’t matter. This was strange (Ella hadn’t gotten sick in about 4 days and now she’s doing it again? We thought she was over the worst of the mucositis). Ella fought going to sleep and finally was asleep before 11pm (way too late for her). Ella had an extremely rough night started by waking up in the 1am hour. She was awake, crying, and inconsolable. We asked her what was wrong? What hurt? Was it her belly again? Did her butt hurt? What was it? Ella just cried, her voice was hoarse from the vomiting and all the crying. Our hearts were just breaking because she wouldn’t communicate what was wrong and we couldn’t help or console her (Nothing worse than feeling helpless as a parent. We are meant to protect our children). Pain medication (a single, one-time dose of morphine) helped for about one hour, but then she was up and unhappy again. We thought, if the pain medicine didn’t work like it had in the past, what is wrong? We did everything to console her and try not to get frustrated (Sarah was better at the latter than I was).

Eventually Ella wore herself out around 5:30a, but we were woken up at about 7:30a for Ella’s CT (“cat”) scan. Oh yeah, on Monday, Ella’s left eye became blood-shot. We had the doctor and nurse practitioners look at and they were going to “watch it.” By Wednesday, ophthalmology was consulted and an eye doctor came to look at Ella’s eye. He pressed on and around her eye and when done, warned us that her eye make become black-and-blue soon after. He was right. That night, Ella had developed a black eye. Ella’s doctors had ordered blood tests and even test of her tears to rule out infections. On Thursday, the doctors wanted to go one step further and do an x-ray. Radiology felt a CT scan was better and so, that was scheduled instead. Problem is, Ella won’t sit still for a CT and she needs to be sedated….actually, put out or “to sleep” so they can get a good “picture.” Never good to know your child is being sedated though she’s done great every time it’s happened.

So, this morning we were taken to CT by 8am for her scan. By 9am, the scan was done and she was snoozing from the sedation. It has been determined that she has cellulitis (a bacterial skin infection) around her left eye. She is being treated with antibiotics and we will see how her eye responds over the next few days. If it gets better, antibiotics will continue for a few weeks. If not, the eye doctors and ENT (ear/nose/throat) doctors will have to figure out some other intervention. Infectious disease doctors (always consulted for ANY infection) think she’ll respond when her immune system is back and the antibiotics are in full force.

Good news for today? Ella’s white blood cells have finally come back(the important cells that fight infections)! 0.72 is the level…low, but at least they’re making an appearance again. Progress. The doctors put Ella back on a pain medicine pump again to control her pain (bone pain similar to “growing pains” but way worse) while her bone marrow is making WBCs again. Once her counts recover (to a more normal level), the pain and the pain pump will go away, Ella will get her nasogastric tube reinserted, and we will restart her tube feeds again.

Hopefully we will be home by end of next week. We won’t rush it though. Ella will respond when her body is good and ready. We will be patient and wait. We want to go home when the time is right because we don’t plan on coming back. We pray for remission (a cure) and we believe that this is Ella’s FINAL hospitalization. She WILL be cancer FREE!!!

January 11, 2015

Ella is still in the hospital recovering from Round 6. She’s had a tough go this round. She threw up her NG tube last night (2nd one this round). So, another tube won’t be reinserted until she starts to feel better and stops getting sick. This afternoon, she started getting IV nutrition (called TPN) in place of her tube. The nausea medication hasn’t been helping. All of the mucus that she swallows is getting thick and the irritation of the mucositis is causing her to get sick. She also started having belly pain last night (most likely from the mucositis), requiring pain medicine. She’s having a rougher go than before, so we are all hoping it doesn’t get worse. She’s still being silly and wanting to play, but she looks tired. She’s not getting restful sleep and you can tell she feels crummy. Her white blood cell count is zero, so her symptoms could worsen. Until her counts recover, her body can’t fix the mucositis.

The doctors started Ella on a morphine (pain medicine) drip tonight. It will be a continuous infusion in order to try and give her constant relief. (They have given her pain medicine but it doesn’t last. She seems comfortable for about 5 hours or so, but then just gets really irritable. Of course, she doesn’t say she’s having pain, so they are “chasing” her pain with medicine. By the time they realize she’s having pain, she’s in a lot. So this is a chance to keep her pain control). They say as soon as her numbers come up, she should start to feel better.

Occupational therapy had Ella playing with shaving cream to help her get used to different textures. The thought is that if she likes it in her hands, she won’t mind food that feels similar. Photos of that, Ella Crayonhands, and everything that’s been added to her pole below.

Tonight, Joe asked Ella if the medicine was making her feel better and she responded, “Yeah.” Hopefully her counts will start to go up and she’ll feel better each day. You got this, Ella!

January 7, 2015

Round 6 is done, friends! Ella has finished her chemo, is done with the baths and dressing changes that happened every six hours, and is done with the stem cell transplant. She is free to roam the halls and dominate the playroom again.

Ella has her nasogastric tube back in and her feeds have resumed. Sarah, Joe, and Ella will be at Children’s Mercy until Ella’s immune system returns, which should be about two weeks. They’ll return home, and Ella will get an MRI in about four weeks. This will tell us how the chemo has worked. They are, of course, so happy to be done. Let’s hope this was the last round! Let’s go Ella!

And, Ella’s t-shirt campaign continues until Saturday! Get your shirt here: http://www.booster.com/positivelyellatosch

Chilling with dad.

Puzzle time!

Roamin’ the halls.

January 3, 2015

CRUSHING CANCER: Round 6.
Round 6 is on, friends! The nurses removed Ella’s dressings and nasogastric tube last night, and she got the first of many baths. (You can see her tube-free face in some photos below. Poor girl has such fair skin that the tape pulled a bit of skin). Chemo started this morning, and she’ll continue to get the super-fun every-6-hour-baths and dressing changes.

She will get 2 days of chemo, 2 days of nothing or “rest” and then her stem cell transplant on Wednesday. Ella and co. should be at the hospital for about 2.5-3 weeks. They’ll be back for clinic visits afterwards and more importantly, 4 weeks after the transplant, Ella will get her MRI.

Many hopes and prayers for a good round and for a LAST round. Go Ella Go!