For anyone that doesn’t already know… My oldest child, Julia, has Ewing Sarcoma cancer. She has a tumor on her pelvis that was 6 inches when she was diagnosed on August 11th of this year.

She’s been going through chemotherapy for the past 3.5 months and so far has had 6 rounds of chemo. Last week she had a bunch of scans — CT, MRI, XYZ? 🤷‍♂️ — to see how things are coming along. From that, they were able to see that the tumor is only 13% of it’s original size!.. also that it’s necrotic (dead) and cystic (fluid filled) — this is great news! 😊

Two days ago, Julia had an interview with 3TV (our channel 3 news in Arizona). They shared her story on the news that night. Here’s a link to their post, which also includes a video of the segment they shared on the news.

Well, yesterday (12/2/21) was the big day that she’s having surgery to remove the tumor. Long story short, they needed to remove a good portion of her pelvis (on the right side, where the tumor is). They’re also removing most of her fibula bone in her right leg to be attached to her pelvis, basically to be a support/brace for her pelvis.

Below are rough time estimates for what happened yesterday…

We got to PCH (Phoenix Children’s Hospital) to start checking in. The next couple hours were checking in, speaking with nurses and doctors, and prepping Julia for surgery.

The nurse rolled her (and her bed) back for surgery. Of course Julia was very nervous for the months, weeks, days, hours, and minutes leading up to this point, but she became very emotional as they started taking her back. This breaks mama’s and my hearts — to see our little girl so afraid. 😭

The urologist came out to tell us his portion is done (that part was quick!). He inserted a catheter/stent or something to keep things open, but also visible for the surgeons doing the major surgery (don’t want to cut the wrong places 😳).

The nurse that’s with her all day today just called me. Everything is going as planned so far. They put an IV in each hand, a line in her wrist, and a bunch of padding everywhere. The cancer surgeon made her incision a few minutes ago. The nurse reminded us there’s a high likelyhood of needing blood during this surgery. They got Julia to sleep nice and quick after they got into the OR. The nurse said she’ll call me back at 10:45 for another update.

The nurse called. They’re continuing to work. They’re currently still dissecting the tumor out — it’s not out yet (taking time getting there). Julia’s vital signs remain stable and she hasn’t gotten blood at this point. They put a different gown on her to keep her warm. Probably around 12:15 for the next call from the nurse. She’ll be calling every 1.5 hours or so with an update, even if it’s “still working back here”.

The nurse called. A little early this time because the tumor is out now and taken over to pathology. The cancer surgeon is coming out to talk to us and the plastic surgeon is going to start his part. The nurse is resetting the “every 1.5 hours call timer to now”.

The cancer surgeon came out to talk to us. Everything’s going well so far. Julia hasn’t needed blood yet, but she still expects that it will be needed. She showed us pictures of the cut out portion of Julia’s pelvis (and the tumor). She let us know the plastic surgeon is just starting to “harvest” (taking the “donor” fibula bone from Julia’s right leg). This next part will probably take a couple hours, so we shouldn’t be seeing or hearing from the plastic surgeon until 2 pm or later.

The nurse called. The plastic surgeon is working on Julia’s right lower leg to get her fibula out — still not out yet. Her vital signs are stable and she’s nice and warm. They’ve given her one unit of blood.

The nurse called. Everything is going as planned — it’s a slow, tedious process — still going on her right leg. She said the cancer surgeon asked her (the nurse) for an estimated time shortly after our last call. She’s estimating they’ll start putting Julia’s fibula into her pelvis in next half hour or so (but she doesn’t like giving time estimates, because they never really know until it happens). By the next call, they should be well into connecting it to her pelvis. No more blood yet and vitals are stable. For pain, the current plan is to have a catheter in her lower leg and another in her hip area, each with a pressurized ball (roughly the size of a men’s league softball). The plastic surgeon will put that in. Julia can’t overdose with it — it’ll release a certain amount of medicine automatically, but Julia/we will also be able to release more, if needed.

The nurse called. Graft is out of her lower leg and put up into her pelvis now. They’re stabilizing it with some screws right now. Once done, the plastic surgeon and his PA (physician assistant) will go under the microscope to start re-vascularization (to reconnect the blood flow). Vitals are stable and they did give her more blood. She mentioned it’s “a big big surgery, so it’s not uncommon”. She’ll go to the ICU (intensive care unit) after the surgery (just reminding us, we already knew this), so they can keep a close eye on everything. It’ll be a private room with a couch and we’re able to spend the night in there with Julia. They’ll probably be “under scope” the next time she calls.

The cancer surgeon finished her part putting plates and screws and is ready to come out to talk with us. Everything is fine. We’re heading upstairs to chat (we were eating dinner in the cafeteria).

We talked with the cancer surgeon after she completed her part of the surgery. She connected the fibula to Julia’s pelvis. It’s a “double barrel”, so they basically snapped the fibula in half (while keeping the blood flow vessels connected). It’s connecting the open area of her pelvis in an “A” (or “V”) shape, sort of like an easel. Screws and a plate are holding each end of the fibula to her pelvis (6 screws and a plate in her pelvis, 1 screw in her lower leg to help support it). The plastic surgeon is connecting all the veins/arteries back up now — probably another 3-4 hours to go for that. She’s had 2 units of blood so far and will likely need a few more before the surgery is over. She’s stable and everything’s going as planned so far.

The nurse called — her final call for the day, since she’s done with her shift now. She said the next nurse, who’s been with her since 9 this morning, will call us in 1.5 hours (her shift is 9am-9pm). They’ve been under the microscope, since about 6 pm, to connect blood vessels (which are veins and arteries, to get blood flow). No further blood products have been needed for most of the later part of the afternoon. Vitals are good and she’s staying warm.

The nurse called. Out of microscope now, just connecting everything together. Should be finished in the next hour, if not less. We need to wait on the 4th floor (or be nearby), so the plastic surgeon can come out to talk to us when finished. She’s stable. No more blood was given, just the 3 units, platelets, and frozen plasma. Julia doesn’t need anymore as of right now.

The next nurse called, since the previous nurse’s shift just ended. They’re just about finishing up and the plastic surgeon will be out soon to talk to us.

14.5 hours of surgery! 🥺 The plastic surgeon came out to talk to us. Everything went well. She’s stable and the breathing tube is out. They had to take out a nerve that gives her feeling in the outer portion of the upper part of her right leg (outer thigh). They put in a donor nerve (from a cadaver) and expect feeling should come back to that area in about 8 months. As far as they can tell, they got “clear margins” (meaning no cancer cells seen at the outer edge of tissue that was removed). We can go up to her ICU room in about 15 mins.

Finally going in to see Julia!

I’m leaving for the night. 🥱 I should be back in the morning. Mama is staying the night with Julia in the ICU.

- Jason