Friday, July 12, 2019

Lily's Journey- Part 2: The Biopsy


There is so much to share with Lily’s journey so I am writing them in parts. You can read Part 1 here.

PART 2

Once we found out Lily’s MIR showed a tumor, things started to happen pretty fast. We found out on May 8th on a Wednesday.  I don’t think I slept at all that night because my heart was hurting for our little girl and my mind was racing with the worst thoughts that she could have cancer. I mean, that is why we were meeting with an oncologist the next day, right? We share the news with our close family members and all of us felt the same way- a mix between sadness and fear of the unknown.

The next morning (May 9th), we had an early appointment with Dr. Brown, the pediatric oncologist at Memorial University Medical Center.

I really didn’t know how the appointment was going to go. I think I got ahead of myself and was thinking she would tell us about stages, survival rate, etc.  Scary stuff.  However, the first thing she told us is that we needed to find out whether the tumor was benign or malignant. To identify it, a biopsy would need to be performed. Also, we needed to find out whether the tumor was contained to one area or if it had spread so we were scheduled for a PET scan and CT scan.

According to the initial MRI results, the tumor was favored to be cancerous in nature. But only pathology could correctly identify it.  The next step was to determine who would perform the biopsy and how it would be done since the tumor was both behind the eye and extended into the base of the skull. 

It was decided the best surgeon for the task was Dr. Petruzelli, an ENT (Ear, Nose and Throat) surgeon. We made an appointment with him as well as scheduled the PET scan the following Monday.

Throughout our time in the clinic, everyone at Memorial was wonderful. The child-life specialists were great with Lily offering her support in case she had any questions and guiding her through scary blood draws and IVs. They also helped her to understand every procedure she was about to have done making her feel so much more comfortable about it all. It was very helpful for us too as this was a whole new world to navigate. At this point, Lily only knew we were just trying to figure out what was wrong with her eye. We didn't even know how to tell her she had a tumor.

Monday, May 13th: Our day was booked. We were to have our PET scan (full body scan) at 9 am, break for lunch and come back for the results, then meet with Dr. Petruzelli in the afternoon. We were happy things were happening fast because we were anxious to have some answers, but at the same time I felt really overwhelmed. We had seen so many doctors over the past few weeks and I really had no time to process what was going on. But still, there was no time for a pause. 

Lily did great with the PET scan and the wait seemed like forever for the results. Finally, the results were in and Dr. Brown came into the patient room with a smile. The PET scan showed the tumor was contained to one area. It was instant relief to know, even if the tumor was malignant, it had not spread. We were just very grateful for the positive news.

Lily in the clinic getting poked

Our next appointment of the day was with Dr. Petruzelli.  He was excellent with Lily. He explained her tumor and biopsy procedure in a way she could understand. He told her there was an unwanted visitor in her head. He was going to check on the visitor and we would have to ask him/her to leave because it doesn’t belong there. I thought it was a great way to explain this for her.

I figured the meeting would be to discuss an upcoming biopsy to be scheduled in the near future. I didn’t realize it meant the very next day. He wanted Lily to have a CT scan and be admitted to the hospital that night. The biopsy would be performed first thing the following morning on Tuesday. Again, things were happening fast.  That’s the crazy part. We really take time for granted. I think that was the hardest part of this whole situation.  I wasn’t allowed time to feel things, to release them, and/or accept what was going on. 

She was resting while the "glowing medicine" spread through her body.

Going through the PET scan
Admitted to the hospital


Neither Lily nor I were prepared we would be staying at the hospital that night. However, we got settled into our room, Lily had the CT scan and then we tried to get some rest.  I didn’t rest all that night but I prayed. I prayed for Dr. Petruzelli, I prayed the biopsy would yield positive news and I prayed for strength; Both for me and for Lily.

The day of the biopsy. Still smiling :)


The biopsy was at 7 am. Lily was nervous, but we both smiled and then she was taken away. Noah and I then waited. It took two hours, but Dr. Petruzelli came out with a big smile on his face. He was happy with the samples he collected for pathology and from the look of the tumor, he believed it to be benign! It was nothing concrete until the pathology results but we were elated.  We were hanging on to every bit of positive that we could. 


Recovering from the biopsy and reading get well cards

Thursday, July 11, 2019

Lily's Journey- Part 1: Lily Has A Tumor

Lily at Dr. Devaro's office
I treated Lily to ice cream for being so good for the MRI

It's funny how certain dates stay with you. They mark the important dates in your life. Most of them are joyous occasions. Some of them are not. I will remember May 8, 2019 forever. That is the day I got the call that Lily had a tumor. 

A little back story. About two years ago, we noticed Lily's right eye slightly wandered when she was tired or not focused. We took her for an eye exam and we were told she had strabismus, an eye condition which the eyes do not align with each other and a slight astigmatism. She was prescribed glasses. 

After the first year, we didn't really notice an improvement in her eye but the doctor didn't seem too concerned. We had also had others in my family ask me about her eye. There was just something that wasn't sitting well with me. Call it mother's intuition. 

Fast forward to May of this year. I decided to seek another eye doctor's opinion and he recommended me to a pediatric ophthalmologist. We had our appointment with Dr. Devaro on May 7th. We were in his office for a couple of hours doing various tests. From what he could see, her vision was good and her optic nerve was healthy. But he was concerned about the bulging (proptosis) and ordered a MRI. I asked him what could be causing her condition and he just told me "we won't know until the MRI results". 

Up until this point I still wasn't alarmed. I still didn't think it was a tumor. I didn't know what it could be to be honest. Dr. Devaro's office called me the very next day and asked if we could bring Lily in for the MRI. I think the sense of urgency for the MRI alarmed me because I figured we would just schedule one the following week. 

May 8, 2019. I took Lily for her MIR at 10 am. It took about 45 minutes. Lily wasn't a huge fan of laying super still and definitely didn't like when the nurse had to poke her to inject the dye. After it was done I figured we would get the results in a couple of days at the earliest. I dropped Lily off at the house and drove back to work. It was around 2:00 pm . I was just getting settled back at my desk when my my phone rang. 

Dr. Devaro was on the other line. I was not prepared for what he told me. I felt like he was talking so fast and then the call was over. He told me he appreciated me taking Lily to get her MRI so soon and then he broke the news. The MRI showed Lily had a large tumor behind her eye. It was pretty concerning and that he wanted us to come into the hospital the next day to meet with Dr. Brown, an oncologist. He said it was serious and that he was sorry. The next step was to get more scans and to get a biopsy done so we could identify what kind of tumor this was and if it was contained or not. I don't even remember if he said anything else.

After I got off the phone, I immediately broke down in tears. The ugly crying ensued and I was inconsolable. TUMOR? ONCOLOGIST? 

My mind started to think for the first time, does Lily have CANCER? 

Wednesday, July 10, 2019

DIY Thank You Gift for Doctors: Prescription Strength Candy Jars

I recently posted on my Instagram account (@glitterandjuls) about a fun DIY project - Prescription Strength candy jars. Since I received some great feedback, I thought I would share how I put them together. 

We have follow-up appointments with Lily's doctors and I wanted to express our gratitude with a small token of appreciation (along with a handwritten thank you note). 

During the week in the hospitals, we showered the nurses and staff with donuts, macarons, and chocolates from our favorite local shops. I wanted to also present something to the doctors and their teams from Lily. 

Insert the prescription strength candy jar idea! These candy jars were so easy and fun to make. I hope doctors and their offices enjoy them! Who doesn't like a sweet treat? 

Here's what you need:
Glass Jar(s) (I found these jars from Hobby Lobby - they were on sale for 50% off too!)
Copy Paper
Printer
Scissors
 Double-sided tape
Candy 

Feel free to download the label I created in Word HERE

These would make great teacher appreciation gifts too! 

Sunday, April 14, 2019

Helpful Tips for Spending One Day at The Wizarding World of Harry Potter


I had so much I wanted to share after our mother-daughter trip to Harry Potter World that I had to split it into two posts! In case you missed it, you can read the first post here, where I share my thoughts on spending one-on-one time and ideas to help inspire you. 

I also wanted to share some helpful tips I learned after visiting the park. It's my third time to Harry Potter World and I was able to do the most during this trip. Since it was just me and Ava on the trip, we could easily cover more of the park and stay there all day.
Look for the telephone booth in "London" and call the Ministry of Magic! 

If you're planning a trip soon, this post is definitely worth a read! 

First thing you need to know, the marketing geniuses split Harry Potter World in two parks. To fully experience The Wizarding World of Harry Potter, you'll need to purchase the park-to-park pass. I definitely think it is worth it and you can totally do it in one day. 

To ensure you do, I'm spilling my secrets! So let's get to it! 

1) Download the Universal Orlando Resort App on your phone. The app comes in really handy when checking wait times for rides, when you need to quickly look at a map and also to reserve a ride time using Virtual Line. 

2) I found it extremely helpful to have an initial game plan. What do you want to do first? What rides do you want to ride the most? We came up with our list and mapped it out so we knew what direction to head once we got into the park. We used the map to familiarize ourselves on where things were and it was extremely helpful! Of course, you won't be able to stick to your game plan all day, but having a plan for arrival will save you confusion and precious time. 
Ava outside 12 Grimwald Place. Take a peek in the window and lookout for Kreacher! 

Stop and chat with the bus driver of the Knight Bus. The hanging head also talks!
 
3) I cannot emphasize this enough- wear comfortable shoes! You will spend most of the day walking and standing so don't try to look too cute with your brand new sneakers. Wear your tried and trues for sure! We spent 12 hours in the park and I was so grateful for my broken in Toms. They were comfortable and I didn't have one single blister to slow me down! 

4) If you're wondering what park to go to first, I say head to Diagon Alley (located at Universal Studios) first. It's the least crowded during the morning and you can take the best photos! We bought our wand first at Olivander's wand shop and then rode on Gringott's ride. Another quick tip- Olivander's is the official wand shop, but it's not the only place to purchase a wand, in fact, there is a pop-up wand shop just around the corner from Olivander's if you don't care about "The wand chooses you" experience that had no line at all! By purchasing the wand first thing, you can take advantage of all the magical spots to use your interactive wand.

5) Don't get discouraged if Harry Potter World is already crowded. There's lots of stores to explore and you can always come back. We actually left Diagon Alley to head to our other favorite rides like The Simpsons Ride and Men in Black. We walked around the loop making our way through all the rides with the least amount of wait times and ended back at Diagon Alley to hop on Hogwart's Express to the other park. The best time to come back is the golden hour- 7pm. We found there was little to no wait times in all areas of the park! People get tired and leave the park so take advantage of this by coming back to your favorite attractions or ones you missed earlier in the day.
Ava just purchased her interactive wand and it comes with a map for all the magical spots to use it!

Diagon Alley on our way to Gringotts! You can exchange your money for Gringott's gold to use throughout the park!

Knockturn Alley

Platform 9 3/4 in line for Hogwarts Express

Inside the train cart. Be sure to ride the train both ways for two different experiences!


6) Ride the Mummy! We came for Harry Potter World, but the Mummy is still my all-time favorite roller coaster at Universal! Ava was scared to at first but she loved it just as much as I did the first time I rode on it!

7) Florida rainy season is no joke. But I find it's all about attitude and preparation. If you know it will rain while you are in the park, pack your rain jackets. The ponchos in the park are over priced and are cheaply made. We didn't get rain on our trip, but I have in the past. The good thing about the rain is that is doesn't tend to last all day. It will come in waves so just have a good attitude about it and explore the shops or stop for a meal/snack until the rain stops.

8) Bring only a small back pack. If you don't have someone watching your belongings while you're on the rides, you'll have to use lockers for some of the rides. The free lockers are pretty small. We packed a back pack and just had a few essentials in it so it easily fit in the lockers.

9) If the wait times are long, take advantage of the single rider lines. I have to admit I was a bit jealous of the express pass people, but tickets for them are steep! But single rider lines cut the wait time in half! Ava is 9 and I was a little nervous at first. But, we agreed we would just wait for each other in the spot right after you get off the ride. And actually, we would end up riding at the same time just in different seats.

10) Ava and I packed some light snacks in our backpack so when we got hungry in lines we had something. We saved our money for a few fun park treats like churros and butter beer of course! We skipped lunch because wait times go down while people stop to eat, but we made a point to enjoy a nice dinner. Ava didn't care for the menu at the Leaky Cauldron (British menu) so we had dinner at The Three Broomsticks. She had chicken fingers and I had a nice rotisserie chicken meal.
Don't forget this photo op in Hogsmeade next to the butter bear cart! Frozen is my favorite way to drink it! 



11) My last tip is check to see if there is a nightly parade. During the parade, lots of people stop to watch. Use this time to go on your favorite attractions/rides! The wait time was 5-15 minutes during the parade so it was perfect!

If you're planning a trip soon, then I hope these tips are helpful! We had such a fun time and we rode all the rides and checked off everything on our Harry Potter list! I hope enjoyed reading this post and if you have other tips for us, please leave them in the comments! I know this will not be our last trip to Universal so I'll keep your pointers in mind for our future trips!
Ava outside of Hogsmeade! 


Ava and I outside Hogwarts! This is another must-have photo op!

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