10 years post surgery

July 8, 2015
I'm feeling very grateful today for our miraculous girl who is full of spunk and personality and adds such spice to our family. Today marks the 10 year anniversary of her surgery to remove the tumor in her neck. Instead of trying to remember all the details, I've simply copied and pasted what I already had saved on my computer.

It all started when her eye started to droop when she was 6 weeks old (May 3, 2005). I didn't think much of it and casually asked our pediatrician, Dr. Cox, about it at her well-child check up two weeks later (May 24, 2005). She thought it might be a cold and would have sent us home with a prescription except her pupils were different sizes.

Dr. Cox instead referred us to Dr. Dries at Primary Children's (May 26, 2005). He's a pediatric ophthalmologist. He suspected she might have what is called Horner's Syndrome but wasn't 100% sure, so he referred us to Dr. Warner, a neuro-ophthalmologist who diagnosed that Ashlyn for sure has Horner's Syndrome (June 21, 2005). This is where the nerve impulse telling the eyelid to open is shortened or not getting through and is usually caused by one of three things:

1. traumatic birth or traumatic head injury (that wasn't it)
2. Neuroblastoma which is a type of cancer occuring in young children which affects the nerve tissue and can spread to the bones, bone marrow, liver. Neuroblastoma RARELY occurs in children as young as Ashlyn who have Horner's Syndrome. Dr. Dries didn't think that was it.
3. It happens for no known reason.

We were hoping it was number 3 and would just end up having to do cosmetic surgery to fix the eyelid. Dr. Warner sent us to have an MRI last Thursday (June 30, 2005). The results were Ashlyn has a tumor located between the jugular vein and the carotid artery in her neck. This is what's causing her eyelid to droop. I was by myself (Tyler was working), talking with Dr. Hedlund the radiologist, as he showed me the film and the mass in her neck. I heard tumor and immediately thought cancer and even teared up at the news. I've since learned that tumor does not mean cancer. I talked to Dr. Dries about the results and he said he has never seen this before in the 8 1/2 years he's been practicing.

Friday we were at the zoo when we got a call that the oncology doctor, Dr. Afify (a-fee-fee), wanted to meet with us. 

What we thought was going to be a 1/2 hour turned into 4 hours. They are all fairly confident that Ashlyn has Neuroblastoma but we are running more tests to be sure. Next Wednesday we have a CT scan and chest xray to see if it has spread anywhere else. We've also done some blood work and urine sample which will possibly tell us if cancer is present. We'll have those results next week.

One option we have if this does turn out to be Neuroblastoma is surgery to remove it which might be tricky because it is in the neck and you're dealing with a lot of nerves and veins. Another oncology doctor seemed to think chemo might be a better option. We are also meeting with an ENT (ear, nose, throat) doctor who would do the surgery if we go that route to see it that's a likely option.

Through it all Ashlyn is still the happy, sweet, smiling baby she's always been. You'd never think there was a thing wrong with her body by the way she acts. We think if it hadn't been for the eyelid, we would never have found at all this information this early. 

Yesterday (Wednesday, July 6, 2005) we had a CT scan and chest xray done. Those came back negative meaning the tumor hasn't spread. The blood work and urine test also were negative. It was a good news day! Today (Thursday, July 7, 2005) we met with Dr. Muntz, the ENT doctor who is doing the surgery. We have surgery planned for tomorrow morning (Friday, July 8, 2005) to remove hopefully all of the tumor and do a biopsy on it. He explained the procedure where they'll do a cut in the neck along the crease to minimize a scar line. They'll look for the main nerves that go to the face and shoulder to be sure not to damage those. He said they're not too concerned with the nerves that go to the skin. The tumor is located between the jugular vein and the cartoid artery and if they have to, they can move those to get to the tumor. The whole procedure should take about an hour. We check in at 6 in the morning, and there's a possibility she'll come home tomorrow night, but more likely Saturday morning. Dad was at our home so he and Tyler gave Ash a priesthood blessing. Through all the crazy, not knowing, I have just felt peaceful and calm.

The surgery was scheduled to take 45 minutes to an hour. It ended up taking 2 hours which made us very nervous. Dr. Muntz finally came out and told us she did very well, but the reason it took so long was he couldn't find the tumor. All he saw was a concentrated mass of lymph nodes which he removed, and scraped the area clean. He and two residents spent extra time really looking to make sure they hadn't missed anything. What an answer to prayer . . . to my prayers . . . to all the prayers that have been offered for her. Prayers really do get answered.

Dr. Muntz sent the lymph nodes to the pathologists for review and we should know sometime this week what the results are. Ashlyn and Ty spent the night Friday at the hospital. She has recovered so quickly and we are so grateful for that. Ty brought the other three kids up Friday night to switch shifts with me, and when Ashlyn saw them she gave them all the biggest smile.

She still has the Horner's Syndrome; this surgery didn't fix her eye. So that is all still a mystery and it's possible it was the lymph nodes that caused it, but Dr. Muntz said he's seen kids with enlarged lymph nodes that have never caused Horner's Syndrome. I'm not sure where we'll go from here; we're just very relieved to have the surgery over and to have found no tumor. This entire experience has made Tyler and I realize how short and precious life is. It has helped us to enjoy our kids a little more not knowing how long they might be with us.

On Wednesday, July 13, 2005, Dr. Afify from the oncology department at Primary Children's called to tell us the results of the biopsy. They found Neuroblastoma in one of the lymph nodes Dr. Muntz removed during surgery. She wants to do several more tests and possibly another MRI (she wants to talk to the radiologist, Dr. Hedlund, first to see if it would even make sense to do another). She mentioned she also wants to discuss this case with other Neuroblastoma specialists to get their view on whether or not we would still have to do chemo. She's not going to advise us on that yet until she's talked to the other doctors. We are meeting with Dr. Afify next Monday or Tuesday.

Tyler met with Dr. Afify yesterday (Monday, July 18, 2005). The pathologists are still studying the lymph node and I guess the tumor was inside of that. The Neuroblastoma has a favorable histology which means that it isn't fast spreading. That's good. She wants Ashlyn to participate in some kind of national study to learn more about what she has. She also wants to do a bone marrow biopsy in addition to the other two tests. Dr. Afify thinks she has either a stage 1 or stage 2 cancer, and if that's the case after doing all these tests than we may not have to do chemo. We'd probably just wait it out and see if the cancer and tumor take care of themselves which is the weird thing about Neuroblastoma. It's the one cancer that can fix itself especially in children under a year. We're keeping our fingers crossed that we don't have to do chemo. Anyway, that's the news. We meet tomorrow with the eye doctor to decide what to do about her eye.

We met with Dr. Dries, the eye doctor, on July 20, 2005. He says her vision is fine and she has no problem seeing things. I asked about the color of her eyes. He said the same nerve that affects the eyelid also affects the color. The left, droopy eye will take longer to get color and it’s possible she will have two different colored eyes. I asked if her eye could possibly fix itself. He’s never dealt with Neuroblastoma and isn’t sure what the outcome will be. He said he is willing to ask the medical field through a listserv that goes around the world and could possible find someone who has dealt with this before to get some answers about the long term outcome on her eye. He explained how the tumor could have just been pushing on the nerve and in that case the nerve cells/endings would grow back and the eye would get better. The other scenario was that the tumor actually infiltrated the nerve and in that case the nerve endings don’t regenerate. He’s also of the opinion to wait and see about cosmetic surgery. If Ashlyn’s eye doesn’t bother her, we won’t do anything.

On Thursday, July 28, 2005, Ashlyn went in for a bone marrow biopsy. Ashlyn has acted like a normal baby other than being a little tired yesterday. They also did a bone morrow aspiration. This is where they take a small needle and insert it into the bone marrow and draw up the fluid. For the bone marrow biospy they took a larger needle and corkscrewed it into the hip bone on both sides in the front got a piece of the actual bone/marrow. That sounds painful, but she was sedated and has been doing just fine. She actually had the same anesthesiologist she had for her neck surgery. He was asking what they found out about the surgery and asked if I remembered him. I guess they have about 20 anesthesiologists up there, so that was unusual that we would end up with the same one.

We also had a follow up visit on the same day with Dr. Muntz, the surgeon (July 28). We talked about the surgery again. He said he got in there didn't see the tumor and removed the two large lymph nodes and sent them over to be examined. They came back fine. He said he actually stepped away from the surgery to look at the MRI films again and decided to scrape all the lymph nodes along the jugular vein and carotid artery. And it was in one of these little lymph nodes that the Neuroblastoma was found. I'm grateful he made that decision to do that. He told me how he felt the surgery went wonderful, that everything was going to turn out fine and was quite shocked to hear about the Neuroblastoma. He told me how they talked about it and the consensus was that it either was a very, very small PRIMARY tumor or it has spread from some other area, probably the adrenal gland. This seems the most probable. He also said how the tumor probably infiltrated the nerve that controls the eyelid and that caused the eyelid to droop. Anyway, a little bit of new information that I learned.

On July 28 she had a bone marrow biopsy and bone marrow aspiration done. This came back okay. :)

This week she had a bone scan on Monday, August 8 which came back okay also. :)

On Tuesday, August 9 and Wednesday, August 10 she had an MIBG test done. Dr. Afify our oncologist said there was a small abnormality on the other side of the neck. Her next words were she is "likely fine, without evidence of tumor elsewhere." An MIBG test entails having nuclear medicine injected into her and waiting a day for it to travel throughout the body. Any abnormalities will take up the nuclear medicine and show up in the scan. This was an area that took up the medicine but the technician thinks it is just her salivary gland. So this all looks like good news. :)

Dr. Afify's other comments were that the biology and histology of the tumor were good. They are doing further testing on the lymph node itself. Up to this point all testing has been done just on the tumor. She calls it a stage 2B cancer where there is a primary tumor that has metastasized (spread) locally. She said, "I can find the B, but not the 2," meaning you can see it has spread but they can't really find the tumor. She talked with her other colleagues about Ashlyn and they are all a little baffled by her. Every cancer patient is different but Ashlyn has been just a little more different. Dr. Afify is recommending no chemo, and we will just be doing follow-up care. Another MRI of the neck is scheduled in a month and then probably a CT scan every 2 to 3 months thereafter. She now seems a little more concerned about the Horner's Syndrome (droopy eyelid) than the Neuroblastoma.

I think our little Ashlyn has made us (at least me) slow down and just enjoy life and how precious it is. It doesn't matter so much anymore whether every dish is put in the dishwasher and the bathrooms are clean and the toys are all neatly put away and the floors are vacuumed. Today I just sat and watched my kids enjoy running through the sprinklers, clothes and all, and it made me remember back to those joyful days of being a kid. Before all this I'd probably have been in the house cleaning up something or doing those last few things on my "to do list." We have surely all enjoyed our little baby.

On Tuesday, September 13, Ashlyn had another MRI of the neck. It came back good meaning nothing out of the ordinary. We are now scheduled to do MRIs every 2 to 3 months until June.
We met with Dr. Dries, the eye doctor. He said her vision is unremarkable. She sees just fine. He also commented that she has classic Horner’s Syndrome from the two different colored eyes. Her right eye is very brown while the left is kind of gray. I thought the left might catch up to the right and be a little lighter. But he said they will only get more distinct. I hope they won’t bother her.

On Tuesday, November 8, Ashlyn had yet another MRI. The results were good. I talked to Dr. Hedlund, the radiologist performing the MRI who also found the mass in the initial MRI. He commented that about a month after Ashlyn, they had another case come in that was almost identical to hers -- presenting with a Horners resulting in Neuroblastoma. Very interesting. We go back in three months instead of two.

*Ashlyn hit the 5 year clean mark for cancer. We haven't been to see the oncologist in about 5 years. What a crazy time of life as I reflect on that today.

--blessed her

--moved

--camping

--Seamons reunion

--swim lessons

--birthday for Nate

--family photos

--funeral for Ma  (my great-grandma)

Sometimes when you're faced with circumstances so out of your control, the only thing you can do is turn those things over to a higher power and pray for miracles. Knowing God was in charge of something I could not control left me feeling peaceful. I knew things were going to turn out okay. And they did.

Good things
smell of the rain
doctors with intuition
compost