Infinite love for Isla

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Infinite love for Isla

Isla is a loving, silly, sassy 3 year old. On May 20, 2022, she was diagnosed with Rhabdomyosarcoma.

We are just at the start of a long journey to a healthy future. Please join us in prayer for Isla and her follow along with her journey here 💛

04/15/2026

No real health updates for you all. We saw immunology and ENT last week. She will start immunotherapy shots soon, but I’m not sure when, and we will follow up with ENT again next week for another ear clean out. She is healing, but slowwwwly and she still has a lot of the surgical packing still in her ear.

We see oncology Friday to follow up regarding her low hemoglobin from the ER. Hopefully it was just a side effect from her blood therapy and has started to recover on its own.

Other than that, we’ve been enjoying the nice weather and yesterday she decided to chop about 6 inches of hair off! I am OBSESSED!!!

04/07/2026

This kid missed the ER staff so much she just couldn’t stay away. Saturday night her ear started draining, which I brushed off as expected since she’s still not completely healed from surgery. Yesterday, she woke up crying that her ear hurt and she was miserable. She doesn’t typically complain of ear pain, so this was unusual for her. She also had a low-grade fever of 100 degrees.

She was able to enjoy her Easter, but she was clearly in pain all day. After talking with ENT today, and after she threw up from the pain, I brought her in. Her infection markers are elevated, indicating a bacterial infection, and her hemoglobin is low. The low blood counts could be because she had blood therapy on Friday, but they haven’t been this low since October 2023, when she was still in treatment. So I will follow up with oncology tomorrow to get her an appointment coming up.

She recieved IV antibiotics here and we will continue oral antibiotics and ear drops at home. Wednesday we have an appointment with immunology to figure out a plan for IVIG. I anticipate that they will not want to wait to start with another infection and round of antibiotics, but we will see what they say. Thursday we will see ENT to follow up for the ear infection.

It’s been a rough day, but I’m so thankful to the team here and the sedation/IV team for making sure she’s comfortable and taken care of. We can’t wait to get home and get some snuggles in.

No matter how awful she’s feeling and how much pain she’s in, she’s still the silliest little thing. It breaks my heart to see her in pain, but I can’t imagine how much pain she would be in if she were a “typical” kid. She’s the toughest, bravest, goofiest kid I know 💛

04/06/2026

Hoppy Easter, everyone! 🐰💐🐣

03/16/2026

Isla saw the ENT this morning and she is healing nicely! She got the all clear for gym and recess and I got the ok to start planning a trip for the 3 of us ❤️

We’re still waiting on the blood work from the genetic testing, but the immunologists think she may have, what is called, Common Variable Immunodeficency (CVID). We will talk more with them once we get the rest of her bloodwork back, but it sounds like we’re looking at long term IVIG treatments. Hopefully this is the answer to her constant illnesses and we can get it under control and keep her healthy in the long run.

She made her leprechaun trap for tonight and she has her green picked out for tomorrow! Thank you all for the continued prayers and support 🥰

03/10/2026

What better way to celebrate still being CANCER FREE than with a pedicure?!?!

We got Isla’s biopsy results back and it was BENIGN!! It feels really silly getting so worked up and worried about scar tissue, but this is our life now. Any little symptom, any weird tissue growth, anything out of the norm scares the daylights out of me.

Thank you all so much for your prayers and love!! Please continue, I know in my heart they are working 💛

Such a relief that it is not a relapse, we can handle the other stuff!

03/08/2026

Lots to share today.

Isla has been doing really well post surgery, she’s absolutely incredible. We’re still waiting on the biopsy results and continuously praying that it was benign tissue.

Wednesday we saw the immunologist. They said that they are worried with how often she is sick and on antibiotics, so they ran some tests, including a genetic panel to look for immune deficiencies that may cause her immune system to remain low. They said that typically this far off treatment we shouldn’t have this issue. We will find out in 2-3 weeks what the tests show, but it is looking like she will need long term IVIG regardless.

Friday we went to clinic for what we were hoping to be her last blood therapy. As I’ve mentioned before, we need her Ferritin (iron) levels to to be below 500 for two consecutive months before we can recheck her liver with an MRI. Last month she was 497 BEFORE they did blood therapy, so naturally I was overly optimistic that this time she would remain below 500. She was 597 this month, so we’re looking at AT LEAST two more months of blood therapy. I almost cried. I was shocked. I went down to the cafeteria to get Isla an ice cream bar because, shoot, she was bummed.

So, every time we start seeing the light at the end of the “monthly appointments” tunnel we get slapped with a “haha, just kidding!” We also graduated to every 4 month scans back in November, but only made it to 3 months before she scared us and needed to be checked out with CT and MRI.

One day we will get there. Hopefully one day soon. But for now we will continue doing whatever we have to do to keep this kid happy and healthy 💛

03/02/2026

We made it home yesterday and this kid has been keeping me laughing all day. She’s so happy to be home and have her bandages off. She’s in some pain, but overall is doing really well! This kid never ceases to amaze me.

She’ll have to miss school again this week and no gym or recess for a couple of weeks. She’s really bummed and missing her besties tremendously, but we need to promote healing and rest is so important for her right now. Right now she isn’t moving her head at all, it hurts too much to turn.

This week she will see a new immunologist to see what next steps are in that department. She’s still very immunocompromised, so hopefully we get some answers. She also has blood therapy scheduled for Friday. Hopefully we will get her biopsy results this week too.

This kid is such a trooper. Today she asked me “was I born with hair? Why did I have to go through cancer?” I don’t have answers for questions like these (but she was born with some hair). It’s not fair, at all. My heart breaks every time she asks me these questions and I can’t answer.

After surgery she wanted to walk the halls to look at the characters they have painted on all of the windows. Again, freaking trooper. We walked around a bit, grabbed a late night snack from the family room, and then went back and snuggled.

Thank you all so much for the continued prayers, please keep them coming for an easy and quick recovery 💛

02/28/2026

Isla did very well in surgery today, I will update with more once I can wrap my head around everything. She is resting with a snack, some Big Bang Theory, and of course mommy snuggles.

Thank you all so, so much for all of the prayers and love these past fews days, but really years. I truly believe they helped, this could have all been so much worse 💛

Cute pic right before she got called to surgery. She loves the remodeled playroom!

02/27/2026

Isla just went back for surgery. Please say some big prayers that surgery is smooth and successful, and that recovery is easy and uneventful.

Her CT of her lungs came back clear, which was such a shock considering she’s been sick. Her MRI is “stable”, but did show tissue and possible fluid/infection. Her doctor is not really sure what he’s going to find during surgery and is considering this an exploratory surgery. There are a couple possibilities for what he might need to do once he’s in there and a high risk of facial paralysis, especially since she’s experienced it before. Please say extra prayers that that doesn’t happen. They will also be doing a biopsy of the tissue and fluid to officially rule out recurrence and any infection.

Isla is surrounded by so much love in that operating room, I know they are treating her as if she were their own. We are truly blessed with the best care team, it helps keep me just a tiny bit calmer while I wait. She was surrounded by familiar, kind faces as she left me and I will be there waiting when she wakes up 💛

02/26/2026

UPDATE!! She’s in for the MRIs now. She will be in for about 2 hours, for her face, orbit and ear. Once she is out she will be sent to a room in the children’s hospital at least until we get the results and the ok to go home.

Please keep those prayers coming, they’re obviously working!

Well, we got to the ER at about 8:30 this morning at the advice of Isla’s care team for an MRI. They got us right into a room and seen by a doctor, our wonderful friends on the sedation team came over and put in her IV (they are the same amazing people that place her IV each month for her blood therapy). Apparently everyone feels that these scans are an urgent need except for the MRI dept.

So, unfortunately, they had to admit her and we could be waiting a long time, or until sometime tomorrow, to get the MRI. Our girl is hungry, but can’t eat incase they call that she can go down for the scans, so she’s getting a little crabby. I was really hoping for some answers today, hopefully soon!

Please keep those prayers coming, we appreciate them so much 💛

02/26/2026

Ugh.
I don’t even know where to start. A few weeks ago I shared that we’ve been going through it. Unfortunately, nothing has changed. Isla has been sick on and off, mostly on, for the last month or so. Cough, snot, high fevers, and issues with her ear, causing headache and dizziness. Antibiotics don’t seem to be helping her, so I’m at a loss. It seems she just keeps getting knocked down as soon as she starts feeling better. I know “‘Tis the season”, but this kid literally cannot catch a break. She’s been to school twice in the past week and a half.

Based on my conversations with her ENT the other day, if this is what he thinks it is she may require another big surgery sooner than later. We also talked about the possibility of recurrent cancer. Since Isla is such an unusual case nothing can be easily ruled out without updated MRI. We are scheduled for an MRI on the 11th, but her team and I don’t feel comfortable waiting that long. So, we will be going in tomorrow and will hopefully have answers soon.

She also has an appointment next week with immunology. I’m really hoping that they can figure out a way to boost her immune system, this kid is sick of being sick!

Please send up some big prayers for the best possible outcome tomorrow, that there is no cancer found, that there is an easy fix, and that my baby will be back to “normal” ASAP. We need good news, I have been a wreck all month. Thank you 💛

We had to cancel our super special Valentine’s Day date, so enjoy a picture of Isla with her homemade heart shaped pizza! I couldn’t love this kid more, she is such a trooper and goes with the flow always. I think I get more upset than her when we have to cancel plans, she’s just such a happy kid.

11/19/2025

Two years ago, on Jason’s 9th birthday, Isla took her last chemo!!

Words are escaping me at the moment, but we will be celebrating extra today! 😭💛

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Orland Park Place
Orland Park, IL
60462

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https://gofund.me/68943a03

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