Lacey - Melanoma

From the beginning. I want to start by sharing a bit of Lacey’s heart:

Lacey will forever be beautiful to me. Not just in the superficial but in who she was. Even in her most darkest time she always wanted to know how you were. She would spend endless time comforting others. She spent time getting to know other children like her from her hospital bed and truly cared about them and wanted to provide for them and see them smile. When she was in the middle of her whole brain radiation treatment someone she cared about was going through their own medical journey and she made sure to let them know they were brave and she cheered them on both the day before and day of their operation. Lacey always gave the best hugs and meant every squeeze she gave. She wanted others to be happy and enjoyed making them laugh. Lacey was offered a make-a-wish and she wanted them to use the money to make other children’s wishes come true. She was a very special child who loved with her whole heart. 

I feel beyond blessed that I got to love her.

Okay….

There are so many barriers which we had to knockdown that come from a health care system that we experienced as fractured at every level. It required so much pushing back and advocating by us. The parents. The ones that know our children the best. We know their nuances, what makes them tick, and what brings pleasure and pain to them. We know when they are “off” and when they are asking for us to be their big voices in a scary situation.

Lacey developed a freckle between her ring and pinky knuckles on her left hand early on. I want to say around 1.5 years of age. We didn’t think much of it in the beginning as it was a freckle. Over the next 3-4 years it changed slowly. 

Lacey became more aware of her mole around SK, and it gradually continued to change. At first the changes were subtle. At this point it was larger in size and turning more mole like. 

This is where it began. 

What came next was challenging.

There were so many barriers which we experienced which included requests for physicians to slow down during appointments so that they are present enough to hear what we were asking.

Over the next months we would ask questions of our pediatrician while at appointments regarding the changes within the freckle/mole. Every time he would brush it off and not give much concern. 

Lacey would come home tearful from school as classmates started to make comments about the mole out of curiosity. Such comments she would share included classmates being grossed out by it, “eww what’s that?” was a common one we heard. Lacey shared she would respond saying it was permanent marker and that she drew on herself. 

After discussions at home to prepare her about what her hand may look like after it is removed and that it may hurt etc Lacey was adamant that she wanted it removed. So we pushed back. I made an appointment with her pediatrician and asked him to have it removed. He again said it didn’t look sinister and that removal wasn’t necessary. We advocated for removal anyhow and said we’d pay if necessary. A referral to a pediatric dermatologist was made. 

In April 2018 we finally saw the pediatric dermatologist who also didn’t seem too concerned about it. He took a photo and some measurements stating we would watch it over the next 6 months or so. This momma said nope to that plan. After discussion with him about him not being comfortable removing it based on location and him not agreeing that a 6 year old was making the decision for herself, we went on our way with a new referral to a pediatric general surgeon at Children’s Hospital. 

In June 2018 Lacey and I met with a surgeon. She immediately agreed to remove it and by the end of the appointment we had a surgery date.

August 2018 Lacey’s mole was removed. She did amazing that day. No complaints at all. She was a champ! Post op was quick and we were on our way home. All was well. Her incision healed well and she started grade 2 with a few limitations on movement due to the stitches over her knuckle. 

Fast forward three months I get a call…what could they possibly want to see us for? 

November 2018. I can remember like it was yesterday. I was at work and got a call from the surgeon’s office requesting I meet with the surgeon immediately. I was so confused and did not understand what their office was calling about. However, I agreed to be at the surgeon’s office the next day. When leaving work for the day I stopped in my supervisors office to share the weird request and talk through the call with her. At one point I clearly remember stating the only thing we hadn’t received from them was the pathology of the mole. It was like a lightbulb turned on and I’m sure I went white. I left work after getting both the approval to be off the following day and the added strength from my supervisor telling me basically not to spin out of control lol. 

It’s the next day. I am trying to be cool as a cucumber as Lacey and I drive to Children’s Hospital. We get into the parking lot of the hospital only to be called by the surgeon’s office. She has been pulled into a trauma surgery and needed to reschedule. I remember asking the surgeon’s assistant so many questions. There is no way they can now expect me to hold myself together with no further information for weeks. It had to be weeks as we were leaving in 2 days for family vacation. I pleaded with her for any information she could give. She couldn’t give me anything. Apparently the file was locked and she didn’t have access. We scheduled for a date in December. 

December came. Our appointment day was here. As we are being brought into the exam room we can see our surgeon at a desk on the phone. We hear her say “what would you like me to tell the family? They are here now.” To this day we don’t know if she was talking about us but it felt so as she came into our room right after. Her bedside manner with Lacey was terrific. She did not want Lacey to be worried about anything. When she spoke with us she didn’t say many words about the pathology report. She had it on her clipboard and showed us while she spoke. “This case has caused quite the uproar”she said. “Lots of discussion back and forth between pathology in London and pathology in Windsor”. What came next…characteristics of spitzoid melanoma, stage 0 cancer, another surgery, larger margins. We left with a new surgery date and me googling spitzoid melanoma as we left the room. 

After the follow up surgery in January 2019 Lacey’s hand healed for the second time and life went on. No plan. No follow up. Silence.  Dave and I got really good at knowing every freckle, every mole that existed on Lacey. We watched them and made mental note of each new one. 

In June 2021 a newer freckle had morphed into a mole that looked very similar to the one removed. It was on the top of her head and when I saw the change I immediately called the pediatrician for an appointment. 

In July 2021 we met with him. I brought my concerns forward. It was like deja vu. He said it didn’t look sinister and he didn’t believe it needed to be removed. Nope not again. This momma was not having it. I respectfully let him know he’s said that about her hand and it ended up being a spitzoid melanoma. I wanted to be referred to her surgeon again. He let me know that was not possible as she had moved to Kingston ON. He let me know he would put a referral in at LHSC for a plastic surgeon after I also let him know I didn’t want another referral to the pediatric dermatologist he had sent us to before as I didn’t find him helpful. 

So the wait began. Again. 

 

Breathe in. Breathe out.

This is where the journey changed drastically. This is where all my mom guilt and what ifs and I should have done more conversations with myself play out. 

What if I fought harder, what if I wasn’t dealing with my husband’s stroke diagnosis, what if my dad hadn’t passed away at the same time, what if I called the doctor more, what if, what if. I could go on and on. 

Things were relatively ‘normal’. A few days before Labour Day Lacey asked Dave and I if it was normal for her knuckle to look how it did. Her ring finger on her left hand had a pea size lump on top of it, under her scar from her two surgeries. 

September 13th we finally saw her pediatrician. He was not too concerned. He wasn’t really sure what it was and he said he would order an ultrasound of her hand. He also used this opportunity to let me know that after our July appointment he looked into Lacey’s file and could not find any information regarding her mole pathology stating it was spitzoid melanoma. He confidently stated that was never commented on anything and that her mole was a spitzoid nevus (benign). When I respectfully disagreed saying I saw it myself, he told me there was nothing reported as such. I asked if I could take her to the Elgin imaging ultrasound place which he said no. He wanted it done at STEGH. At this appointment I also asked for her to see her initial surgeon again. I said I would go to Kingston and felt better working with her as she already knew Lacey’s history.

October 1st I called the pediatrician’s office sharing the changes I was noticing that were happening quickly. Bruising, colour change, and size difference. I was told there was nothing they could do without the ultrasound so there was no point in coming in. I asked when the ultrasound would be scheduled for and the receptionist said she would look into it. 

We had an ultrasound the following week and when we arrived the registration assistant said to me they never received an initial request, ugh. A few days later we received a call from the pediatrician’s office saying the results of the ultrasound came back and her lump was diagnosed as scar tissue. What?! That did not make sense. I tried challenging it but was told that is what it was determined to be. Her pediatrician also shared that he would put a referral in for plastic surgery at LHSC. Again. Sigh. 

November 12th Lacey’s initial surgeon called me. We chatted about what was going on and how I was struggling with the diagnosis. She asked for me to email her photos and she would get back to me in a few days. I sent photos from a few different angles. Within 10 minutes of sending it she emailed me back stating the lump needed to be removed and that she would send a referral to plastic surgery at LHSC also. Sigh. 

November 29th I had Dave take Lacey to the pediatrician as sadly I thought maybe because it was dad maybe it would be taken more seriously as it has grown bigger again, and her ability to use her hand was no longer at full capacity. The doctor again stood behind the scar tissue diagnosis…. still! The lump was now the size of a golf ball on top of her hand. It did not make sense. 

December 9th Lacey shared her ring finger was numb like and felt like pins and needles. She asked for the second opinion that we had chatted a few times about. I took her to the emergency room at STEGH. I expected to wait forever. We didn’t wait at all. She went right in. The doctor stated that there wasn’t a surgeon in Elgin County who would operate on that and he would put a referral in to plastic surgery at LHSC 🤬 I shared my frustration about this response as this would be the 3rd referral regarding this lump “Bob” over the past 3 months and nothing was happening. Meanwhile it kept getting bigger and did not look like scar tissue to me. 

December 14th we got a call finally from LHSC for an appointment same day. I took her in, surgeon was anxious, photos were taken and sent to somebody and biopsy was done. Worst day. I was so naive. I had no idea what was about to come next. 

Being told you should know why the surgeon you just met couldn’t sit still while talking to you within 24-48 hours seems impossible. The remainder of that week in December felt never ending and each time my phone rang I’d jump up to answer it. 

Sadly 24-48 hours turned into the following week. I called the surgeon’s office on the Monday and waited patiently still for them to call back. 

December 20th Lacey was diagnosed with stage 3 melanoma. We were told over the phone. I can remember holding that information close to us for days and days as we did not want to upset Lacey’s Christmas. 

We knew it possibly could be her last Christmas and she was already dealing with celebrating it without her two grandfathers that we lost in 2021. We wanted her to still have her Christmas magic and we could tell her after. 

The hours of each day felt long. We did have to return to the hospital a few days that week before Christmas to have tests done and to find out our not so great options. 

Dave and I asked ourselves so many times how did we get here? How is this possible? It was scar tissue wasn’t it? That’s what we were told over and over again. Even though we didn’t buy that diagnosis we didn’t think this. Stage 3?! 

Melanoma, when caught early (stage 0-2) is 97% curable. Once you get to stage 3 and 4 those survival rates drop drastically. 

Every time I think about how much I felt guilt like I dropped the ball I can’t breathe. 

My sweet girl’s outcome would have been so different had curiosity been in the room with us and the doctor. Her trajectory would have been so different if history was reviewed. It all could be so different if we were speaking a language the doctors could understand. 

After all the tests done over the holidays of 2021 we were told her scans were clear. We were getting the best possible outcome. 

Lacey would undergo partial amputation surgery and we would be able to move forward. She would be followed very closely and scans would happened every 3 months for the first year. 

She got to live. Lacey made sure that after her surgery she loved every day so FULL. She didn’t waste one minute and she accomplished everything she wanted to.

I wish I could tell you that this is where it ended. I wish Lacey’s amputation was the end of this nightmare and where her strong will to continue being who she was and fighting to have “reborn” skills in all faucets of her life started. I wish I was telling you about all the hopes she had to stand with and for all amputees. How she shared her determination to be proud of the new her and how what she lost wasn’t going to stop anything she wanted to do. She didn’t want any physical supports or prosthetics even though they were available to her. She always said mom this is me now and I can do what I want with what I have. 

Physically, Lacey was remarkable in her recovery. She knew she had things she wanted to do and she did them. 

Emotionally,  Lacey experienced flashbacks of the trauma from surgery. She experienced nightmares and what she called busy brain. She struggled to focus and was not available for learning. 

I can remember in all the information that was told to us in December that Lacey had a team. A team of people who would walk this journey with her. Doctors, nurse case managers, social workers, psychologists, child life specialists etc etc.  I thought where are all these people? Why are we not hearing from them? Why are we left to navigate this road alone? 

What I found out later that week was shocking. We had been discharged from oncology. Discharged meant no team. No help. No follow up. No support. 

After the shock wore off that we no longer had a team supporting us I worked to create one. We met with a social worker in our community who was going to work with us to help Lacey through this really hard stuff. Thankful!

We did get a call from a social worker who worked at the hospital. Unfortunately I decided pretty quickly they were not a fit for my girl. 1. They didn’t know anything about her or what she had just endured because they had not read her information before making contact and 2. They suggested art therapy would be a good place to start. 🤔 Nope. Sorry. Lacey was working through hard stuff relating to the surgery where she had a large portion amputation of her dominant hand. I did not think art therapy would be appropriate. In fact Lacey was working really hard at gaining her fine motor skills back so let’s not put front and center what she cannot do. Thank you though. 

Lacey was always on top of everything. She knew that any lump or bump had to be brought to us. A new lump. On the back of her head. Of course my initial reaction was to sound the alarms! I talked myself down and Lacey didn’t want to go see her doctor so I told her we could watch it for a few days. 

Then the weight loss. And the limp. And the pain complaints in her back and leg. Now we really needed to get on this. Wait. It’s April. We are three months out from surgery so we should be getting a scan. Right?! Dave came to our appointment this month with the surgeon. He was going to be asking why this scan had not been booked. He was going to ask for it. Well he did. He asked for it. 

Sadly, the response was that serial scans were no longer the standard practice of care. He was told that the risks of secondary cancers due to the radiation from the machine outweighed the benefits due to Lacey being a girl. He was told no. Even with us sharing all that was new this month we were told no. When Dave asked for it anyway he was told the surgeon would consult with the oncologist. 

We were hopeful. Again. 

Melanoma has a 13% chance of reappearing once removed. So if there was no spread from her initial location her chances of melanoma coming back was at least 10% higher than the secondary cancers we were told about. So, can we have the scan now?

• Don’t make a mountain out of a mole hill.
• Don’t jump to worst case scenario.
• This is all explainable.
• The doctors are not concerned so please breathe.

These are all things I have said to myself. More than once. If the people who have fiduciary duty and responsibility in regard to my daughter’s care are not concerned then I must trust them right?! If the people who hold the power to decide if my daughter’s ailments qualify for screening or scans decide she doesn’t need it I must be over reacting, right?! 

I took one week. One week after our appointment with our surgeon to do all the “mom” things I could do at home. I mean this could all be explained through what Lacey was doing. April was a busy month for her. She had 3 weekends of dance competitions in April. She had been in a fender bender in April. Her muscles could all be sore from dance. She may be more active this month which is why she is losing weight. Her lower body may be compensating for the struggles of her upper body as she relearned skills lost and regained strength lost during her recovery from surgery. 

These are the explanations I told myself after our surgeon didn’t seem concerned with what we told them. 

So I used epsom salt baths, essential oils, massage, over the counter medications, added calorie intake, and rest to try and soothe Lacey’s concerning ailments. One week. 

None of this helped. No improvements. More pain. More weight loss. Now tired frequently. Falling asleep when she wouldn’t before. 

I called her pediatrician’s office and she was seen same day. She was first seen by a medical student. They asked all the ‘normal’ questions. Then they asked if there was any history that may impact these symptoms. Yep. Stage 3 melanoma. Medical student left. They returned with a resident. Same questions. Physical exam. This resident said if we came in with same symptoms and no history they would tell us to keep doing what we are doing. Because of her history they wanted blood work done and an X-ray of her leg/hip. 

We leave the office. Lacey is not happy. She asked if she is always going to be known as the cancer kid now. Sigh.

I read the X-ray requisition. 

Reason for X-ray- metastatic melanoma, bone fractures. I can’t breathe. 

When we got the results back we were asked to go to our local hospital the same day. They were a bit concerned about Lacey’s bloodwork and wanted the doctor to review her blood work again. I took Lacey and we did the tests and we were told we had to wait for the results before we could leave. A short time later we were told we could go. They didn’t say anything regarding the reason for rerunning or what concerned them. We were just told that if her symptoms continued to return to our pediatrician. 

Five days later we left for a family trip to Disney. Lacey had been waiting for this trip since June 2020 and we kept postponing due to covid. We discussed as a family postponing again due to how Lacey was feeling however she was adamant she wanted to go still. Not known to us as the time, this trip would be our last as a family. 

There were a lot of momma tears shed this trip. Quietly, and alone with Dave I would cry. I knew something was very wrong with our girl. We had been to Disney so many times before and we knew what Lacey at Disney was like. This trip it was not the same Lacey. My heart shattered more. 

We discussed taking her to the hospital in Florida. We discussed coming home early. Lacey wanted to make the most of our trip so we did. Our trip was different than we all thought it would be but I will hold the memories from it very close to my heart always. 

The day after we returned home we saw our surgeon. Lacey and I attended the appointment and I cried something fierce that day. My poor girl watched her mom as I internally realized that nothing would ever be the same. I gave every detail of what we were experiencing to him. Again. 

The lump on her head. The limp. More weight loss. More pain. And included exactly what our trip entailed. 

There was no sense of urgency. I felt like my insides were screaming “Open Your EYES!”  I just kept saying over and over “something is really wrong”. Nothing still. 

The surgeon spoke to the oncologist and they decided that an ultrasound of Lacey’s head and abdomen would be a good place to start. It was scheduled for 4 weeks from then. Which sadly was considered an urgent turnaround. 

That last week in May was the last time my daughter danced. It was the last week I got to see her do something that she loved so dearly. Thursday June 2nd was the last day she attended classes and that was cut short due to pain. Horseback riding?! Cancelled. We had to cancel her upcoming lessons and she was never able to return. 

We had no way to prepare for what was about to happen. 

Lacey’s pain intensified daily at the beginning of June. Newly prescribed pain medications were not helping. I felt helpless and thrusted into trying to manage dosages and timing of medications to try and provide any relief to Lacey that I could. There was an appointment that was scheduled with us to go over research project results for Lacey with oncology. I hijacked that appointment to use the opportunity to bring all Lacey’s ailments to their attention. Brain CT and chest X-ray were tasked and they looked good. The plan for the ultrasound at the end of the month remained.  Three days later she was admitted to the hospital for pain management. While inpatient it was decided Lacey should have a petscan. It got booked for two weeks later. We remember hearing doctors talk about melanoma reoccurrence. With that we knew time mattered. Melanoma is quick. 

We had an opportunity to go to the US for the scan the next day. All we needed was her doctor in Canada to write down that Lacey needed a petscan. Nothing formal. The clinic in the US just needed to justify why they were scanning her. We were told by more than one doctor “no”. The reason given was that they wanted the same machine, the same contrast dye, and the same radiologist as before to read the results. If we went to the US Lacey’s disc with her scan images that we brought back would be considered a consultation and would not be a priority. We were beside ourselves! All we wanted to provide was the facilitation of a scan she needed in a quicker manner so we knew what was going on and we could start helping her quicker. We heard many “no’s” throughout Lacey’s journey but this one was difficult to comprehend. 

By mid June our sweet girl’s symptoms were so significant that she could no longer walk. How was she dancing two weeks ago and now bedridden?! 

We learned in mid June that Lacey’s cancer had spread. Widespread throughout many areas of her body, mostly impacting bones. She had multiple fractures in different areas of her body. 

We were told that Lacey’s cancer spread was much worst than initially anticipated by the doctor based on how Lacey presented. We were told she must have a very high tolerance for pain. 

Broken. My heart was devastated for what my girl must have been feeling.

My heart will forever feel devastation when I think of what my girl had to experience during the final 5 months of her life. The pain that came because NOONE cared enough to read reports, offer treatment to her or follow treatment plans laid out to us will haunt me forever. When we received reports 7 months after they were written it showed the lack of importance she had to them. Reports that stated known progressive and yet nothing was offered to treat it was maddening. Discharging her from care and refusing imaging when necessary cost Lacey the ultimate price. She paid dearly in the last 5 months of her life. 

Lacey gained her wings November 19th 2022. 

The End.

#laceystrong

#pediatricmelanoma 

#childhoodcancer 

#forevereleven

 

Something we were always asked:

 

Why not go to the US? 

I can promise you that Dave and I tried with everything we have to do just that. The problem lies in bureaucratic processes. It is not as easy in what we experienced to just go there as we were international patients.

Yes they have many more solid tumor clinical trials available. Yes they understood solid tumors better as they have more research dollars and are less conservative in what they approve for trial. Health Canada’s approval process for medications and procedural trials is much more difficult and lengthy. 

First- there needs to be an identified problem. You will see that there were many struggles in getting our doctors to identify a problem.

Second- our medical team had to be the one to reach out and make referrals to hospitals running clinical trials for solid tumors in the US. It was only us doing this.

Third- Lacey’s cancer became too far advanced by the time it was investigated that she no longer met the qualifying requirements.

On my own I spoke with the primary physicians running trials in the US. When you call their numbers they answer typically the first time. Themselves. It was quite a shock to me honestly. We requested her tumor tissue to be sent to specific hospitals that asked for it. It took over two months for them to receive what they requested from our hospitals here. It was a very frustrating process as we were already so far behind due to late detection and then to be told Lacey’s cancer had advanced too far for them to do anything was shattering. 

I tell you all this because we have received many queries into why didn’t we do this. We did. I spoke to doctors in four different states. All of them said the same thing. If she had been referred to them sooner she would have been a candidate. The last doctor I spoke to in October said if her doctor here would refer her he could have her in the trial she needed by March or April 2023, and if they had received her information before it had advanced to her central nervous system. Unfortunately by the time I found out about the trial, and contacted myself it was too late. Lacey did not have until the spring of 2023.