Lilly's battle against Kidney Cancer!

$9,630 of $10,000 goal

Raised by 185 people in 3 months
Created March 4, 2019
Lilly’s Army
on behalf of Jodi McComb
37513222_1552913922483395_r.jpegLilly McComb was a happy healthy 9 year old, she had a series of flu bugs between November and March and Mom started to become concerned that she was losing weight but Mom and doctors thought it was just due to the flu bugs and the fact that she had grown quite a bit.  Little did anyone know that she had a tumor that was growing aggressively.

On Friday March 1st Lilly was playing dodgeball in gym class at school and while she was out she was laying tummy up on the floor when another child tripped and fell on her. This began a serious of terrifying events for Lilly and her family. When she got home from school she immediately started vomiting. Mom thought it was yet again another flu bug, but was a bit concerned that her tummy was very hard. All night Lilly continued to vomit on and off and was complaining of pain in her abdomen. The next morning Saturday March 2nd she was taken in to the Almonte General Hospital and it was suspected she ruptured her spleen, she was hypertensive and in excruciating pain.

Lilly was then rushed by ambulance to CHEO where they performed blood work an ultrasound, X-rays and inserted an NG tube to help pump the contents of her stomach out. Her bowels were backing up into her stomach. It was the CT scan that confirmed a large mass approximately 20 cm in size attached to her kidney. Lilly has a condition that no one knew of until that moment. She had a horseshoe kidney, meaning her kidneys did not separate as they usually do and they remained joined. Lilly remained at CHEO as the many teams discussed her condition. On the Monday March 4th it was decided that the radiologist at CHEO did not feel confident in performing a biopsy on the mass and the teams immediately contacted the doctors at Sick Kids in Toronto where they felt confident they could help Lilly. On Monday evening Lilly and her Mom were air lifted to Sick Kids in Toronto.

Lilly was put under general anesthetic and a biopsy was performed on Wednesday March 6th. Fast forward 1 week later, Lilly’s pain was better managed with hydromorphone and Tylenol and she was feeling better every day in the meantime the family was anxiously awaiting the results of the mass. Praying it wasn’t the C word. Results were inconclusive, although they were able to tell the family that Lilly had cancer but they were unsure of what type of cancer it was. Some cells indicated Wilms with a stroma component, synovial cell carcinoma but spindle cells were present which indicates it could be sarcoma or renal cell carcinoma. There were also genetic components that were present and a gene SS18. The tissue has been sent to another lab (Hopkins) in Toronto for further testing.

On Friday March 15th the doctors felt that they could wait no longer and started chemotherapy for Lilly as they await the results on the tissue sample.  The plan at this point is to wait two weeks and they will do another CT scan to see if the tumor has shrunk. If the chemo has no effect they will do surgery to remove the tumor and try and save as much of her left kidney as possible.

Lilly is 9 years old she loves playing the piano, she loves cats especially her cat Cinder. She also has a special interest in wildlife and nature.  

Her family was not expecting this and I want to take away the worry of the financial burden this will have on their family as they continue treatment so far from home.

If you would like to email Jodi a donation directly, please do at jodimccomb@gmail.com

I honestly can't thank you enough for your support!

Thank you!

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Day 4 Post Op update
Lilly finally ate today and walked! We cheated just a bit with an increased dose of Nabilone to help her already poor appetite, but hey whatever works, right!Lilly hasn't needed any top up doses of hydromorph and was starting to feel itchy and her tummy was bothering her. The pain team felt she may not be requiring the IV hydromorph, so we've switched to an oral dose which she can have every 4 hours with top ups every 2 as needed. Which means...she lost her IV in her left hand...which also means, she can colour better now! It's important!
Today the nurse also removed her Foley, so now she has to get out of bed to pee(a little motivation!! )
Yep you counted right that's 2 tubes gone!! Her epidural is next, and then the only other tubes she will have will be her abdominal drain and the IV fluids running through her port.

Today was the happiest I have seen her, she had colour in her face again and she was smiling!! She has always been a bit shy(a bit like her Momma) and usually says no to any volunteers that try to engage her in an activity. Today she met a young lady, Leslie, that initially was told a very firm no, when asking if Lilly wanted to do anything.
A little later in the day she came into the room to help us try and figure out how to connect a Wii system. She heard Lilly listening to her ABBA music and started talking to her about the Mamma Mia movies. Chris and I needed air, but unless Lilly's napping I don't like to leave her alone, so I asked Lilly if we could have Leslie come hang out with her?
I got a very excited Yes!
They hung out for over 2 hours playing cards, colouring and singing! ❤️

When Lilly starts singing again, we know life is good!!


Day 5 post op
Today they stopped Lilly's epidural. We are still trying to find the dose of hydromorph that keeps her comfortable, but that is to be expected.
We didn't get in much walking today because of pain but we were out of the room for a big chunk of the morning and afternoon in the Samsung Space. Lilly was able to be sitting up in her wheelchair. Way better then laying in bed watching TV all day.
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Lilly kept us on our toes today (Day 2 post op) For Chris and I it was another high stress day.

It started with Lilly vomiting up her 9am medication. When she vomited it was an all too familiar green bile. Oncology team was paged, and she was given an oral laxative to hopefully help her bowels wake up. It’s common after major surgery when things in the abdomen were moved around for them to be sluggish, I’m told. She’s only been able to tolerate small sips of water anything more and she’s vomiting.

By noon Lilly's chest and breathing started sounding crackly. She had needed to cough earlier in the day and up came a bunch of mucus. Unfortunately for Lilly it was extremely painful with the incision. The feeling that she has mucus in her throat wouldn’t go away, she kept trying to bring something up but couldn’t muster a cough because it was too painful. It was shortly after this episode that her oxygen levels started to decrease and at first the nurse thought her monitor wasn’t giving her an accurate reading but Lilly continued to struggle to catch her breath. The nurse said I need more help, I need to push this button. She pushed the bedside emergency alarm and nurses immediately started running in the room. Long story short, and to spare you all the drama they think there is too much excess fluid in her body and it doesn’t know where to go. Her eyes were constantly watering and the fluid also went into her lungs. A bedside x-ray was done and the bottom half of her right lung has collapsed. I’ve been told this can sometimes happen after surgery. We’ve given a diuretic to reduced fluid in her body, she's on an oxygen mask and we had a consult with the physiotherapist. We will continue with breathing exercises to open up the right lung again.
They wanted to have her try and sit on the side of the bed to help open up her lungs at some point today and maybe even have her sit in a chair. The nurse and I looked at each other and I could tell by the expression on her face that we both were thinking the same thing. I said I do not think she is ready for a chair. I told her we can try getting her to sit on the side of the bed, but it’s whatever Lilly can tolerate.

So here is the positive in my day. At 7 pm Lilly said to the nurse and I, “I want to try sitting on the side of the bed now.”
I’m in shock but say, “Ok that’s amazing you want to try.”
It was a team effort, 3 nurses, Chris and myself and Lilly were able to get her at the side of the bed. So feet dangling, she tries to stand! Keep in mind she’s on hydro morph and still has an epidural. We quickly start to lower the bed so her little feet can touch the floor. And with assistance she stands and then sits in a chair next to the bed for a whole 5 minutes. We are all blown away at the strength, courage and endurance it took for her to do that after the crummy day she had.

Nurses check on her every hour and every two hours they wake her to adjust her body. She’s slowly starting to be able to wiggle up in the bed but rolling her on to her side is painful for her. It also plays on one’s emotions when you are overtired and just can’t get a decent stretch of sleep. I’ll be bringing this up with the team in the morning because tonight she’s been in tears begging the nurse to let her sleep.

It’s the strangest thing to me, you’re in the hospital to get better and one of the most important natural things to heal, is to sleep. Yet it’s the one thing you don’t get in the hospital.
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A quick update Lilly's surgery went very well as far as we can tell. Best news is the surgeons were able to save a decent size of her left kidney and from what they can see they have gotten all of the 22cm tumour. She also had her PICC line removed and a port put in. She went in at 8 am. and was out shortly after 7pm, so it felt like the day would never end for us.

Thank you for all your positive energy and prayers.

Lilly is in ICU tonight and the plan is for her to return to her room under observation in the morning.
She has an epidural still in for pain and the plan is to leave that in for a few days.
It took us a few hours to get her pain free but hydromorph again, seems to do the trick. It's just a matter of finding the right cocktail. When her tumour ruptured in March it took us quite a few weeks to get her pain under control, so I mentioned hydromorph and the nurse had it approved almost instantly and administered.
She has an NG tube in for drainage since they moved around her bowels, Foley catheter will be in for a few days, a drain from her abdomen for any excess blood and urine and an IV in her left arm for fluids.
Yes there are tubes everywhere again and we can't wait to celebrate the removal of each one.

Please continue with positive healing energy and strength sent to Lilly.
We expect to be here for a week maybe a little longer but it will all depend on Lilly. Chemo, I believe, will continue again at CHEO.
We should know a little bit more about which type of sarcoma Lilly had now that it's out, but that will take some time.

#Lillysarmy #renalsarcoma #childhoodcancerawareness #cancersucks
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Bloodwork at CHEO 8am this morning all levels were better after Fridays blood transfusion. A call from our Oncologist to the surgeon at Sick Kids, it was decided surgery would be this week.
So, then it was home, pack (honestly I never unpacked much)and off to Toronto.

Lilly has been scheduled for surgery this Wednesday and will be admitted tomorrow at noon for pre- operative care.
We were very lucky again that Ronald McDonald house literally called us at 12:30 this afternoon to tell us they had a room available. Everything seems to be falling into place. I can only hope tomorrow and Wednesday are the same.

So here I am asking our amazing army. We need positive energy, prayers, vibes, thoughts all of it sent to Lilly for Wednesday.
Her surgeon Dr. Lorenzo and his team will be removing her right kidney, the tumour, lymph nodes surrounding them and try and leave as much of her left kidney as possible and hope she can have normal kidney function afterwards. They will clean out her abdomen as much as possible of the ruptured tumour and the blood that leaked into her abdomen. Once she has healed enough from her surgery we will continue with chemotherapy and then eventually radiation back at CHEO.
It's still a long road ahead of us, but we are moving in the right direction so far.
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$9,630 of $10,000 goal

Raised by 185 people in 3 months
Created March 4, 2019
Lilly’s Army
on behalf of Jodi McComb
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