August 30, 2015

Yesterday’s update from Joe:

Ella has been doing pretty good. It has taken a bit, but she seems to be getting used to her medications. Ella was very lethargic for the past few days, but perked up last night and all day today. Ella is on steroids to reduce swelling in her head (gives intense mood swings at times), anti seizure medicine, and morphine to control headaches. Ella seems comfortable and she has been happy. Yesterday, Ella had a great bath (it was the first in a few days). She was resistant at first, but grandma helped get her in and then she loved it. Lots of bubbles and toots (farts for the crude folk). Ella said, ” Toots are funny!!!” It was hilarious and totally Ella. It was the most alive she’s been since before the last hospitalization.

Today, I went to the KCares for Kids Walk at Sporting Park. Ella wasn’t quite ready as it took place in the morning. Ella is not quite a morning person. She likes to lounge in bed and watch cartoons, so she stayed home with Sarah. It was good to see some of the other oncology families and all of the staff from Children’s Mercy. We are proud members of the Joe Strong team headed by PJ and Mary Cucar Ludwikoski. The Joe Strong team was the largest team and raised the most money for the heme/onc department at CMH! We love us some PJ and Mary. (How phenomenal are they? They wore Positively Ella shirts today instead of Joe Strong shirts. They are absolutely the best people you’ll meet.)

Ella had a great day today. She has been feeling pretty good and seems to be herself. Laughing and doing most things she loves. Both sets of grandparents are in town and Ella loves them all. There are lots of people to keep her entertained, but nothing like a visit from Princess Elsa from Frozen! Elsa came to our place this afternoon for a special visit (thank you so much Arlene Way). Elsa played music, blew bubbles, and talked with Ella. Ella was afraid at first and kinda overwhelmed. She quickly took in the experience and had so much fun. She never left Sarah’s lap, but it was all she talked about for the rest of the evening.

We are so blessed to have wonderful people in our lives. To see the smiles on Ella’s face today….priceless. We will continue to try and make her days this special. (Still finalizing Ella’s Make-A-Wish. We will let you know when it’s done.) We are so thankful for everyone that has prayed and supported us. Thank you so so much. We are so blessed and we love you all. God bless!

 

August 27, 2015

Update from Joe:

Ella made it to Frozen on Ice! Ella’s doctors made sure to discharge us early so that we could make the 10:30 a.m. performance. Grandpa Bob was our chauffeur for the day and made sure that we had door-to-door service. So awesome! Our tickets were phenomenal, but being so close to the action was too much for Ella. Ella said it was too loud and so, we moved up to the top and watched from there. Ella snuggled Sarah the whole time. I was sent out onto the concourse multiple times for food and souvenirs. Whatever Ella wants, Ella gets!

Initially, Ella was not so into it, but we quickly saw smiles and heard her laugh. It warmed our hearts so much. We are so grateful that our CMH team made sure to get Ella to the performance on time. As we left the Sprint Center, Ella told Sarah, “I had fun at Frozen on Ice!” Thank you to everyone that reached out to us and wanted to make today even more special. We all loved it!

This afternoon, we returned home. Ella loves being home and she was signing “Let It Go” while holding one of her many Frozen wands. She truly is happy.

Reality set in when we met with our hospice nurse and officially signed paperwork to admit Ella into hospice. The general consensus of Ella’s doctors and the hospice team is that Ella has weeks-to-months. Only God truly knows, so that time will be as great as we can make it. Tomorrow, we meet with Ella’s Make A Wish wish granters. That should be fun to plan and hopefully it will happen very soon.

We don’t know what other fun stuff that we can do, but we will do our research. Thank you again for your prayers! I will update tomorrow after our Wish meeting. Love you all! Sarah and I have been brought to tears so many times reading the many posts and comments. Please keep praying. God bless!

  
  
  

August 25, 2015

Update from Joe:

Sorry to delay but good news travels fast and bad news takes forever. Well, we have received the worst possible news. Ella has shown more tumor progression despite the chemo given. Ella’s oncologist feels that we have exhausted all options. Ella’s tumors have raged on through extremely potent chemo and the doctors feel there is nothing more they can offer. They feel it would be cruel to put her through more treatment seeing that the heavy hitters didn’t work. Sarah and I are absolutely floored. We have been nothing but sobbing messes. We haven’t had talks about the upcoming days/weeks/months. We don’t know what the talks will hold. If there truly isn’t anything more to do, we are going to make Ella’s life the most exciting that we can! Please continue to pray for comfort and peace. God bless!

August 25, 2015

Last night’s update from Joe:

Ella is back in the hospital. Today has been a rough day to say the least. I was working and Sarah was home alone with Ella. Everything happens when I’m at work. Well, Ella started her morning by vomiting and saying her head hurt. This afternoon, Ella hasn’t been right at all. She hasn’t been steady on her feet, she’s been talking nonsense, and seems to be clumsy and a bit confused. Ella vomited again in the ER triage. Ella’s blood work is good and head CT is unchanged from her last. Her sodium is still in normal range at 137.

The doctors have admitted Ella for observation. Since waking up from the bit of versed (given to calm her for her CT), Ella seems just miserable. Once on the oncology floor, Ella vomited up her NG tube. She’s also complained more of her head hurting. She just seems downright miserable. Ella is restless, keeps sighing deeply, and crying out. Sarah and I are terrified because no one has a clue what’s happening. Everything just seemed to get worse so fast. We worry that her sodium will tank again and that she’s in the beginning stages of SIADH again (it’s what ended her up in the ICU 3 weeks ago). We’re also worried about disease progression. Sarah and I are pressing the doctors to try and move up her MRI. We don’t want to wait until Friday. Something is going on with Ella and it’s frightening not knowing what it is. This poor girl just can’t catch a break.

Please say extra prayers for Ella. Please pray that this is nothing serious and that the cancer is dying. Thank you and God bless. We will update as we know more. For those that don’t want to comment, we’ll take a “like” as though you’re praying.

August 21, 2015

Update from Joe!

Clinic was full of good news today. All of Ella’s blood counts were good, (and her counts have been stable for the last few weeks) which means we won’t go to clinic on Tuesday. Also, Ella is done with her sodium chloride supplements! Looks as if her SIADH has resolved!

One thing that isn’t good – Ella complained of a few headaches this morning (also had one or two on Monday and Wednesday). The headaches seem to come and go quickly. She grabs her head and says that her head hurts, but quickly returns to normal. She hasn’t been sleeping well and it seems that she complains of headaches more so when she’s tired. We’re hoping it’s nothing. Ella wasn’t herself this morning (she just looked like she felt yucky) but has returned to good ol’Ella this afternoon.

Hopefully the next week is uneventful in terms of no trips to the hospital and hopefully Ella feels good. We will enjoy a week off from clinic. On Thursday, Frozen on Ice! Friday, Ella’s MRI. Saturday, KCares For Kids Walk. Thank you all for the love, prayers, and support!

  

Fundraiser

Hi folks,

I’m posting to let you know about a fundraiser going on in support of Miss Ella, run by Ella friend and supporter Angela Mioglionico. Angela is a Jamberry Nails Independent Consultant and is hosting an online “party” where she is selling nail wraps (a creative, cost-efficient, and chip-free way to do your nails!) and will be donating her entire commission (30% of “party” sales) and half of her hostess rewards to Ella.

As you may already know, Ella is a BIG fan of fancy nails!

Angela has even created some “Ella Exclusive” wraps, in purple (Ella’s favorite color), gray (brain cancer support) and yellow (childhood cancer awareness). Check out her site and the photos below, and see how you can get a manicure AND support the Ella-cure! (Be sure to choose “Team Ella” at checkout!)

If you have questions, you can contact Angela at mioglionicojams@gmail.com. And you can access the group facebook page here.

August 18, 2015

Update from Joe!

Ella complained that her head hurt yesterday morning. She also vomited a bit on Sunday night and then again yesterday morning. It was only two quick episodes (none of the retching like in the hospital). We called the heme/onc clinic to see if we should come in for a sodium check since Ella started with headaches and vomiting. Ella’s oncologist learned of the headache and vomiting and then sent us to the emergency room for a head CT and blood work. Our ER visit took forever, but in the end, all is well. Ella’s CT showed no changes from her previous one! And her blood work is good. Her hemoglobin is stable and platelets are up! ANC is 3920!

We were discharged and decided to take advantage of the rest of the afternoon downtown. Since the kids are back in school already, we knew that Crown Center would be a ghost town. We took Ella to Fritz’s Railroad Restaurant where “trains” deliver your food to your table. Ella was enthralled. Next, we made it outside to check out the fountains (Kansas City is the city of fountains). Then, into Sealife which is the local aquarium. Ella had a blast checking out all of the fish! She said, “We are having so much fun in Kansas City!”

Lastly, we went back into Crown Center and did some shopping. Ella got some ruby red slippers just like Dorothy (you can see them in the photo of Sarah and Ella doing squats in our fitness center). That was enough excitement for Ella and she passed out as soon as we got in the car to head home. She woke up when we got home and wanted to go get the mail. That’s when we went to our fitness center and she did squats with momma. Today, she’s in such a great mood. She’s been eating pancakes, coloring, playing, and we’ve been dancing! We will not have to go back to clinic until Friday!

August 11, 2015

Update from Joe on all the Ella happenings over the last week. SUPER ELLLLAAAAA!

Ella was discharged from the hospital last Friday. Ella had a pretty rough round of chemo. She didn’t have many symptoms from the chemo except one BIG one…SIADH. Ella was losing sodium and it caused major swelling in her head resulting in seizures and a trip to the ICU. To prevent her sodium from dipping again, Ella’s doctors are replacing her sodium with an oral sodium supplement (hence the reason for the NG tube…Ella thought the medicine was “yucky” and refuses to take it by mouth). 

On Saturday, we returned to the hospital for a check of Ella’s sodium after having an afternoon and night at home. We wanted to see if her eating and drinking would return to normal once home and how it would effect her sodium. Well, her sodium was normal on Saturday and Ella’s eating has gone WAY up!

Due to the swelling that Ella had in her brain from the SIADH, she was put on steroids to help reduce the swelling. The steroids have also stimulated a monster appetite! Ella has a few favorite foods and can’t get enough of them. She currently loves chicken nuggets (have to be from Chick-Fil-A) and pancakes. Yesterday, Ella had 3 pancakes and 10 chicken nuggets!!! She put on almost a whole pound over the weekend! She was 12.9 kg at discharge and was 13.3 kg today in clinic. (Way to go, Ella)!

Besides eating like an athlete, Ella has been full of energy and very playful. The chemo and trip to the ICU had weakened her, but she has quickly snapped back into the Ella that we all know. Ella has been talking more, laughing, and we even danced this morning before clinic. Ella’s clinic visit today was full of very good news. First, we met with the nutritionist and she agreed that we do not have to give Ella tube feedings (Ella wasn’t eating very much before discharge and we were going to give her feedings to keep her weight up). Ella has had no problem eating and her weight is good! 

Second, Ella’s blood counts are very good. Her hemoglobin is stable at 9.0 (no need for a blood transfusion). Ella’s platelets were 20, so that bought her a bag of platelets and that’s OK because it only takes 20 minutes. Ella’s ANC is 2,000!!! Ella has been getting neupogen shots since being in the ICU last weekend (the neupogen is to help stimulate her bone marrow to start making blood cells again). The best news came from Ella’s oncologist, Dr. Ginn….no more neupogen shots! The shots are done for this round as long as her counts stay up! Ella has been dreading the shots and has asked dad to stop giving her “pinches.” Breaks your heart. 

Finally, we will back off on Ella’s sodium supplements (her sodium was 140 today). Instead of 3 times a day, we will give her sodium twice a day. We will return to clinic at the end of the week for another check of her labs. It will be interesting to see how her ANC and sodium respond the rest of the week. So, all great news. Ella is definitely healing.  

At the end of the month, we plan on taking Ella to see Frozen on Ice. We haven’t done anything in public like this since before she was diagnosed. Ella is pretty excited (she was watching a video of it on YouTube this morning). Frozen will be the day before her MRI. We expect that whole week to be fantastic. Ella’s MRI is bound to be awesome. God could have taken Ella last weekend, but He didn’t. We believe that Ella will beat this! Ella is going to crush cancer once and for all!!! 

   

    
 
   
    
    
    
 

August 2, 2015

Update from Joe:

We have been moved out of the PICU and are back on the oncology floor! Ella has been doing well and her sodium is stable, so we are back in familiar surroundings. Ella had a rough night last night in the PICU. Yesterday afternoon, we were given some freedom and were able to wander the halls. Soon after, we were moved to another room which was a room for less critical patients. This was exciting news, but the change did not sit well with Ella. Ella was unable to settle down and was again given haldol (the same psych med as the day before) in order to sleep. Ella was then able to sleep the night away!

This morning, the doctors all felt that Ella was stable and said we would return to 4 Henson. Exciting and scary at the same time. Ella had a pancake for breakfast, and we were transferred back to the floor at 2pm today. The doctors felt that Ella’s combination of meds and the ICU were keeping her restless. They were right because the familiar surroundings of 4 Henson were immediately calming. Ella had a bath and had her mediport needle changed. This upset her again because it requires us to hold her down, but she eventually calmed down with a walk and a visit to the playroom.

This evening, we were able to magically get Ella back in her room (she likes the halls and playroom as her safe zones), get her in bed, and are now watching Toy Story. Ella has even eaten gummi bears, Cheerios, and some blueberries. She seems content and we hope for a peaceful, restful, uneventful night. We pray that her sodium stays stable.

For those who wonder how bad this weekend was, we have been learning more and more details about it. We learned that the consensus of the doctors was that she would not make it. They were fearful that she would never come off the ventilator and most likely be brain dead from all of the events. So, the medical team thought that Ella wouldn’t make it, and look at where we are now! (THIS GIRL CRUSHES EVERYTHING!) Ella is definitely a Child of God! All of our prayers have been answered and she has defied great odds. We are so grateful for the work of the doctors and nurses, and for each and every prayer offered up for Ella. We are FOREVER grateful!

We will work to be discharged this week and then Ella will have an MRI in a couple weeks. The MRI will show us if the chemo that may have helped put Ella in the ICU, worked or not. The MRI results will help us to determine our next plan of action. Stay with us everyone; we aren’t done yet! Please continue to pray for Ella because she still has some cancer crushing to do! Love you all!

(P.S. How incredible are Joe and Sarah?! Ella’s got some amazing partners in her cancer crushing corner. Please continue to send your love and support to these superhero parents).

August 1, 2015

As you may have heard by now, it has been a rough couple of days for Ella and co. We are not out of the woods yet, but Ella is stable and showing signs of progress.

Ella finished chemo and was due to be discharged from the hospital yesterday, but after a night of vomiting, she woke up and was clearly not herself. She began having seizures, which were caused by swelling in her brain. Her sodium levels also plummeted, resulting in additional swelling and seizures. Ella was intubated and put on a ventilator to help her breathe. The medical staff in the PICU wanted to take stress off her body and do anything to reduce the swelling in her head.

With an aggressive treatment, the team was able to get Ella’s levels into the 140s within 6 hours. This was scary because that aggressive treatment could cause more seizures or worse – brain damage. But the risk of more swelling and brain herniation was more urgent than the seizures. Ella started to show signs of becoming herself again early this morning. She became more feisty and was even fighting the nurses a bit during diaper changes (it was so awesome).

Around 4:00 AM this morning, Ella really started to come alive. She was starting to fight the breathing tube and  the nurses (she moved her whole body trying to kick one of the nurses). She was even mouthing that she wanted “momma!” It took FIVE people to hold her down (such a fighter!) to a). prevent her from pulling out her breathing tube and b). sedate her again. They wanted to keep her tube in until they got another head CT scan. Her CT showed improvement in the swelling on her brain, which is awesome news! She did not have any more seizures and was extubated once the sedation wore off.

Ella is still fighting this thing. She gets downright angry at times (the team thinks this could be from all the medications she’s getting). She’s starting to talk like normal Ella and has even chugged a bunch of water and juice (we have to be careful with fluids because they can lower her sodium again). Ella’s nurses are doing neurological checks every hour (checking pupils, reflexes, etc.) to make sure her brain is stable, and they are checking sodium levels every 6 hours. Ella and co. will stay in the ICU for a bit– we’re not sure how long yet. She’s stable, but they still need to be pretty cautious. 

Thank you, everyone, for rallying around Ella! We are all so thankful for all of your thoughts and prayers. Please continue to send her, Joe, and Sarah your love. They are total superstars.