"We have to take her back in, we found something during the scan."
"What do you mean you found something?! What did you find?!"
I looked over at my husband, he had that look, that look I have only seen 3 times, all when something was wrong with one of his daughters.
"I am not sure, the radiologist was going over the scans and he saw something in her chest that he would like to go back in to get a better look at."
"Ok, well the radiologist needs to come tell us what is happening because you don't get to just take her back with out telling us what is going on!"
I looked at my husband again, he still had that look.
"Let me see if I can get him to come talk to you guys."
The nurse walked out of the recovery room to go find the radiologist and I now looked down at my baby. Maxine was laying on a giant adult size hospital bed with a little tiny nasal cannula in still fast asleep from the sedation. I stroked her curly blonde hair and kissed her forehead while a single tear fell down my cheek. This was supposed to be a routine MRI to rule out neurological conditions that would impede her scoliosis treatment and nothing about this was becoming routine.
I looked at my husband again....
"They found something in her chest?! What is in her chest?! So its not her spine"
"I think its her heart...." Arthur said staring off at the wall.
"Its not her heart!" I was more convicning myself more than anything else, I already knew that 20 percent of infantile scoliosis patients have a heart defect.
The radiologist came walking in....
"I saw a spot in her upper right lung region, since she is already out we should just go back in and get better scans of that region."
"What does that mean you found a spot?"
"Well it could be nothing, might just be a bit on pneumonia."
"If she had pneumonia don't you think I would know it?!"
"Not neccesarily."
"My daughter does not have pneumonia."
And just like that they rolled her back out to the MRI room.... The next two weeks would be like living a nightmare.
After about 40 minutes the radiologist came out to the waiting room to tell us his findings. I really felt for this poor guy, I still do, we was shaking as he informed us that he found a 2 cm by 3cm "tumor" in her right lung. The radiologist told us how sorry he was to give us this news and that a Shriners doctor would follow up with us the next week. Just like that our world crumbled around us. My 14 month old baby had a tumor in her lung?
It was a very long and quiet drive home.....
About 30 minutes after arriving home my phone rang and I immediately recognized the number as our pediatrians office.
"Hello"
"Hi Mrs. McCauley, this is Dr. ####### and I have a room waiting for you guys at Peds ICU."
"What is going on?"
"I don't know but we have cause for serious concern here and it is unacceptable to make you guys wait all weekend for answers. I would like you to head over to ###### Hospital and Dr. #### is waiting for you guys."
"Again, what is going on? They found a mass in her lung? Is this cancer? Does my baby have cancer?"
"I cant answer that but we have strong reason to believe that is a very likely possabilty."
On the drive to the hospital my husband looked into the rear view mirror so he could see me and said "I feel like we are being punished for something."
To which I replied "We are not being punished."
And we continued our painfully quiet drive back to the hospital.
We checked into Peds ICU with ease at about 10 pm....I later found out we were actually admitted to the Peds oncology unit and the ICU was across the hall.
We were met by Dr. #### who coincidentally or in a sick twist of fate was the same doctor that cared for our oldest daughter during one of her many ICU stays 2 years prior. I recognized him, he did not recognize me back. Its funny how some images, some faces remain burned into your brain in the face of tragedy, stress, or worry.
"What are we dealing with here?"
"Well I cant say for certain without more tests but this looks like Neuroblastoma."
"So cancer?"
"Yes."
I Started to sob, I have followed stories of Neuroblastoma children, I haven't seen one that survived (not that they don't but none of the stories I've seen have.) This couldn't possibly be happening, can somebody wake me up from this twisted dream now?
Dr. #### ordered a ton of labs and a CT scan and went to see if we could get a biopsy done this late on a Friday night.
We were informed that Maxine would need an IV in order to undergo the CT Scan so my husband went with her to the treatment room and I stayed behind to make phone calls to family. About 30 minutes later I came walking down the hall and I heard Maxine screaming bloody murder, every mother knows their childrens cries. I opened the door to see 3 nurses holding Maxine down on a bed while she screamed: beat red and sweaty while my husband tried to calm her by caressing her hair.
I stepped into the room....
"This is about to be over!"
The nurse looked up at me and I could see the look on her face, things were about to go downhill fast.
"We need to get an IV in to do the CT, we are trying to find the best vein so we only have to stick her once!!!!"
"I understand why you are doing this but she is not going to die if she doesn't get this IV right now... BUT THIS is traumatizing and bordering on abuse."
Right as the words came out of my mouth the nurse trying to insert the IV stuck the needle into the top of her hand and I could see her hands shaking like a leaf. It blew.... The IV was no good. I picked Maxine up and swooped her over to the corner of the room trying to console her. I overheard one of the nurses tell the other nurse to go get a different nurse to come back and try again.
About 15 minutes later after Maxine had fallen asleep in my arms from sheer exhaustion (it was past midnight at this time) the 3 prior nurses came back in with a new nurse to try again. This time I chose to hold her and prayed she slept through it. We weren't that lucky.....
It took another 30 minutes to place the IV, the entire time Maxine was crying out like something I will never forget. When they finally placed the IV and I heard the nurse say "Got It" I dropped my head and began to sob, like truly sob an ugly cry and I whispered "Now I think we are being punished...."
I went back to the room and tried to lay down while Arthur took her in for the scan. As I was laying on that crappy hospital cot I begged God for this not to be true. I begged God to take me instead.
Upon waking the next day we were met with a surgeon and an oncologist. Which even at the time it seemed so odd to me that they would bring in an oncologist talking to us about chemotherapy and protocols without a definitive diagnosis.
The surgeon came in and told us she actually thought this was Lymphoma based off of the location and the fact that the mass was actually located more towards the front of her body. The "tumor" was actually not in her lung but right next to her lung under her clavicle bone on the right side. The thing is even in my moment of complete panic none of this was making sense to me. Typically neuroblastomas are incredibly aggressive and either spread through the entire body or have one HUGE mass before they are caught. Maxine had one mass the size of a marble. Lymphoma did not make sense either because it is a cancer of the lymph nodes and we had already established that the nodes were clear.
"Is there any chance this is benign?"
"No I don't think so..."
"But we don't even have a biopsy yet, certain neuroblastomas are benign and resolve on their own."
"Yes, but that is typically seen in children under age 12 months, based on the location of the tumor and her age all of us doctors are in agreement this IS cancer, this is not a question of is or isn't but instead a question of what kind of cancer. Maxine will need treatment. We will not be able to surgically remove any of the tumor based on the location so its best to put in a central line while we are in for the biopsy so she can start the chemo immediately."
We were discharged shortly after that conversation and told someone would call us to scheduled the biopsy and central line placement. I know this may sound odd but I actually felt hopeful leaving after being told she thought it could possibly be lymphoma. The prognosis for Lymphoma is much better than that for neuroblastoma, I felt like as long as my child didn't die we could face anything that came at us.
Once I got home I immediately started researching alternative treatments. To be perfectly honest I was more scared of chemo than I was of the cancer, I could not imagine Maxine in a hospital bed sicker than a dog, getting pumped full of poison. I wasn't convinced that the cancer would kill her but I wasn't so sure that the chemo wouldn't. If Maxine was able to make it out the other side of chemo what would be the cost? Would she be sterile? Deaf? Left with serious mental and growth defecits? All of the above? We weren't talking about chemo for a strong 35 year old man, we were talking about chemo for a 14 month old baby that weighed barely 20 lbs. Just the thought of it was absolutely unbearable...
Then things got worse.
We received a phone call that Maxine biopsy and central line placement would be that coming Thursday and that the doctor would like us to come in to meet with her before hand. The next day we headed to the office to have what we thought was a standard pre op appointment; that wasn't the case.
"So, I just need to say it, after looking at the scans with a pediatric radiologist we are now certain that this is in fact neuroblastoma and not lymphoma. Based on the location of the tumor and the fact that we can not remove any of it surgically it makes the prognosis much more tricky."
"What does that mean?"
"Well it means that she is a very lucky little girl because this was an incidental finding. However, she will need to start chemotherapy immediately after the biopsy."
The surgeon also informed us that she was not even sure if she could get a biopsy due to the location, what then? Nobody really knew the answer to that.
Everything was spinning....
I know it doesn't seem like what I was told in that moment was that much worse than what we had already been told but it truly was. In a worst case scenario lymphomas still have a 80 percent survival rate. Neuroblastomas on the other hand can run anywhere from 20-50 percent.
I tried to digest it all...
The doctors kept giving us this really horrible news over and over and over but in my gut and apparently in my husbands gut it just wasn't all adding up. That night after returning home my husband approached me.
"Why are we putting a chemo port in when we don't have a biopsy yet?"
"Because they are certain its cancer and she needs chemo."
"But this is stupid, its a huge infection risk, its another surgery, she is 1 and is gonna yank it out.... I don't want to put it in with out a biopsy."
"Well we need to be prepared for them to call CPS if we refuse."
We both just looked at each other knowing that was a very real possibility.... I mean, that was one of my biggest fears through all of this: CPS. Would we get a CPS case for refusing the port? Asking for a second opinion? Refusing Tylenol? I was actually afraid to tell the doctors we were giving her teas and fresh raw juices. To some these things might seem asinine to loose your child over, to those that followed the case of Baby Sammy who was taken from his parents for seeking a second opinion on heart surgery you know I had every reason to be afraid.
I will spare you all the little details of the morning of the biopsy; all you need to know is I was a complete wreck. I wasn't a wreck because of the surgery, that was scary, but it was the results I was sure we would get that had me crumbling to pieces that morning. There was never a question of "IF" this was cancer, according to 5 different doctors this WAS cancer we just needed confirmation on the type. I fell apart because I feared this was just the beginning of such a long and painful road for my baby. This surgery would be the first of many, the first step in the assault on her tiny body, the first step towards loosing her.
An amazing friend was with me that morning and she kept telling me about the power of a mothers love, its ability to heal, I could send her all the calming and healing thoughts she needed.
I closed my eyes, I closed by eyes and took deep breaths. I closed my eyes and I envisioned Maxine's life. I saw light shining down on her and glistening off her blonde curly hair. I saw light shining into her and exploding this mass in her chest. I saw light shining on her as she started kindergarten holding her sisters hand. I saw light shining on her as she played soccer with mountains in the background. I saw light shining on her with my husband holding her hand on her wedding day.
I walked over to Maxine's she was being wheeled into surgery and put my hand right onto her chest where the tumor sat and I envisioned that light again...
Now we waited...
Two hours later the surgeon came into the waiting room to update us, Maxine's tribe stood up (I say tribe because at that point we had multiplied to about 15 people.)
"The surgery went great!"
I just stood there...
"So actually it went really great, the mass did not look like neuroblastoma, it looked like Thymus tissue."
"Excuse me, what?!" My mother in law now putting her arm around my waist, she may have been holding me up.
"Yah, it looked like Thymus tissue. I have never seen Thymus tissue in this spot but that is what it looked like. Neuroblastomas are typically hard, this was soft and squishy, I pushed on it a little bit and the whole thing fell apart and I was able to remove about 99% of it. We still have to send this in for biopsy but I will be very surprised if this does come back as cancer."
I let out my first real breath in 18 days...like I felt as though all the air left my body, my shoulders finally dropped, I cant even describe it.
"So its not cancer?! You were so sure before!"
"That was based off the location and the direction the mass was growing in and based off what the radiologist told me. Like I said, I have never seen Thymus tissue in this space before. After seeing the mass it actually was not growing towards the spine like the radiologist said. This is kind of a miracle we don't get to see happy endings like this."
There was a bit more small talk and I was headed back to recovery to see my baby.
Nine days later the biopsy came back: Benign Thymus Tissue.
Again, the doctor reiterated how rare this was and how it truly was a miracle, she told me " I never get to give good news so today is an amazing day."
I was still trying to take in everything that had transpired over those 18 days: The good and the bad.
I have never seen such an amazing outpouring of love in my life, the support our family received in those first days was nothing short of miraculous. We had some of the greatest minds I have ever seen come together to help find treatment options for Maxine. In the first day after returning home from the initial "diagnosis" we had an incredible group of women come together to arrange fresh cancer killing juices, chiropractic care, meal trains, fund raising and so much more. I had 5-6 care packages dropped off on my doorstep almost daily ranging from stuffed animals and blankets for the kids to essential oil care packages. I received flowers sent to me from Jamaica and one amazing woman who overnighted special grapes from Oregon for Maxine's juices. We had prayer groups, we had thousand of people stopping in silence and praying for my baby. When I say it was incredible I still cant even wrap my mind around it... I truly believe I wouldn't have made it through those 18 days if it wasn't for these woman, they didn't just save Maxine, they saved me.
And.... Then there was the bad.
I have always been good at standing tall, being strong, never letting anyone see my true emotions. These 18 days were no exception, I continued to portray publicly what I thought I needed to, I certainly couldn't fall apart. Meanwhile, in the privacy of my home, behind the internet I was crumbling.
How do you wrap your mind around your 14 month old having cancer? How do you deal with the thought of burying your baby? For 18 days I crumbled in privacy... I was unable to answer my phone, I made sure I didn't see anyone that came by to drop things for us. I didn't know if I could look at any of them and keep my composure. For 18 days I thought that my baby would die, not just die but die a slow and horrible pain filled chemotherapy death. For 18 days I thought that we would end up going to the hospital and that my baby would never come home. For 18 days I wondered how I could ever look my oldest child in the eyes and tell her that her sister and her best friend went to heaven. For 18 days I thought even if that all wasn't true she would still go through torture for the years of her life that she would have been learning to talk and stack blocks. For 18 days I slept on the floor in Maxine's room because I just needed to be close to her, if I was going to loose her I couldn't bare the thought of not having those precious moments with her as she slept.
Every day of Maxine's life I have gone in to get her from her crib and would lay her head on my shoulder and smell her hair. Maxine's hair has the most amazing smell and of all the things I think I was most upset about that. I know that might sound stupid, of all the things we were dealing with I truly was probably the most upset about her hair, the thought of not ever smell Maxine's hair again was unbearable.
It has been two weeks since the biopsy and I still don't know how I feel...
Obviously I am over the moon Maxine didn't have cancer but there is still so much to take in. As a family that has been failed by the medical establishment time and time again was this another failure? Did they speak to soon, cause all this turmoil for no reason, or did they truly believe they were doing the right thing? I am more inclined to believe that these doctors had no nefarious intent... I do not believe that they wanted to push chemo on her for no reason (some may disagree) but what I sensed from these doctors that wasn't the case. I believe what happened is what happens far to often: Tunnel Vision.
Doctors are trained in a tunnel vision type practice of medicine; to find a doctor that thinks outside the box is usually somewhat of a miracle. There is typically only one way to treat, one way to see things, the patient isn't a person but a case, if these are the symptoms then this is the diagnosis, one size fit all, shoot em up bang bang medicine.
Over the course of 18 days I must have asked these 5 doctors at least 50 times if there was any chance this was benign, every single time I was met with the same devastating answer: No.
I still do not believe they had ill intent, I do not believe they wanted to hurt my child or send me into a nervous breakdown. Nope. I simply think that this is what doctors do, they find conditions and treat them, they work in tunnel vision, Maxine got trapped in that tunnel.
