Wow! So why didn't anyone tell me that 30 was going to be so rough? I just read my "Over The Hill" post and that seems like 2 lifetimes ago now.
In July, Garth and I went on an anniversary trip to St. Thomas to celebrate 10 years of marriage. While we were there, we were able to see so many beautiful things and we had so much fun just being together.
No kids, no worries. We had fun, I'm glad we went. But somehow our life fell apart while we were gone and we didn't even know it. I have felt guilty (not a new thing for me) looking back, trying to think of a time while we were there that I might have felt a motherly inkling that something wasn't quite right, or that "still small voice" whispering to me that I needed to be ready for a great trial, but there is nothing. Even when Grandma
texted me about taking Gavin to the doctor on Monday, I didn't have anything tell me that it was serious. I spent the week taking pictures, snorkeling, eating, shopping and
canoodling with my husband. I wasn't prepared at all for the direction our lives were about to take.
Saturday night, July 23, 2011, Garth and I landed in Lubbock after a very long day of traveling. I was very excited to come home to the kids and my mom brought Garth Lee to the airport with her to pick us up even though it was close to midnight so that we could see him. Gavin was with Grandma that day because we tried to make sure that the boys weren't too much of a handful and that they got their alone time with grandparents so they spent a lot of the time at different places while we
were gone. I made sure it was
ok with Grandma that I came and got Gavin even though it was late because I missed him and I had never been away from him for that long. As Mom drove us home from the airport, she talked about Gavin being sick that week and that he was pretty croupy, but that he had finished his steroids and he was still on the cough medicine that he was prescribed when Grandma took him to the doctor almost a week before. It reminded me that he was sick, I had forgotten.
As soon as we were home, Garth and Garth Lee took our luggage in and got ready for bed as I left to go get Gavin. I walked in the door and I could hear him wheezing. He was tired, but running around, just like normal. He was a little hesitant to come to me, it had been a week since he saw me and I had never been away from him for more than a weekend and that was only once. When he came to me, he put his head on my shoulder and coughed. I've never heard a cough like that. It was bad and even Grandma said it hadn't been that bad all week. I hurried home and told Garth we needed to get the
nebulizer set up and give him a breathing treatment and I would take him to Urgent Care the next morning.
We couldn't find the
albuterol anywhere. Now, you have to realize, my friend and I had spent and entire week organizing my whole house just before we left for St. Thomas. Every
nook, every cranny in my house was cleaned and organized, including my medicine cabinet, but Gavin's breathing treatments were NOWHERE. While Garth was still looking for it, Gavin fell asleep from sheer
exhaustion and was sleeping well, so I laid down beside him, wondering what I should do. Gavin coughed again and Garth came to his door and we looked at each other and I got up and got dressed and drove to the ER with Gavin while Garth stayed with our sleeping 7 year old. I got there about an hour after we landed at the airport.
Of course when we checked in, Gavin was awake and wanting down to play with the toys in the waiting room, no cough, no wheezing, another $150 copay for overreacting. I was silently hoping that he would cough, just so they could hear what we heard, but he never did. The nurses were cordial, but I could tell they were thinking "Let's just get this kid a breathing treatment to make Mom happy and send them home"...I was sort of thinking the same thing. The doctor came in and I told him the same story we had told over and over for months. Gavin had a cough. The same cough that every kid anywhere had that winter. Every time we took him to the doctor, it was an ear infection, strep throat, croup, or just a virus. One thing we never got was a chest X-ray. I could tell the doctor was a little concerned, he gave us a breathing treatment, and Gavin started coughing. The doctor wanted to get an X-ray, just to make sure it was croup and get some blood cultures just to make sure it wasn't pneumonia.
I remember the doctor coming in several times while the nurses were trying to get IV access for G
avin so they could draw labs. They had to poke him more times than I could count. At this point he was hysterical and screaming and coughing and even the nurses commented on the cough, it "didn't sound like croup". Finally, they got a little bit of blood, and the doctor made me come look at the X-ray. I'm a pharmacist, not a radiologist, but something was seriously wrong with that X-ray. All the doctor said was that he wasn't sure what it was, but that we were not going home and he was consulting Dr.
Goldthorne. I remember him saying "mass" and "clean margins" and "very large". After that, everything changed. The doctor ordered a CT scan with contrast and it was done in less than and hour. Everyone was overly polite. The nurses would either avoid eye contact with me or they would put their hand on me when they spoke to me, like they were giving me their condolences. The doctor gave Gavin a dose of IV antibiotics while we were waiting for a room because he was assuming it was a pneumonia until we knew different. I held Gavin down, while he cried, all night long. I thought pneumonia was our worst case scenario.
The nurse walked us to our room at 5 in the morning. She was the one that was touching me
a lot. I don't remember her name, but I remember her face when I asked her what room we were going to so I could text my husband and she told me we were going to the ICU.
The nurses in the
PICU were very nice and got us all set up and asked me all of the same questions that I had been asked 100 times that night. Medical history, family history, when was his last bowel movement...After all of that, the charge nurse asked me if I had any questions. I asked her what they thought it was, to tell me the truth. The charge nurse and Gavin's ICU nurse looked at each other and said nothing. So I asked what we were hoping it was, what was the best case scenario. An infection turned out to be what we were hoping for. Our ICU nurse looked at the chart and told me that no one had read the actual CT report yet, but the preliminary results were that the mass was solid and not liquid. I had no idea what that meant. She said that if it were an infection, it would have been liquid, like pus, but that it was solid, the mass was solid, probably not an infection, but they didn't know for sure until the doctor read it. The look the nurses gave each other after that said that they knew for sure, but they couldn't officially tell me.
I
texted Garth that we were in the
PICU and that it was not an infection. I asked him if I should call people. At this point no one else even knew we had gone to the ER. He said to wait until 6 or 7 am, when they would be getting up, there was no reason to worry everyone if we didn't know anything.
Garth got to the hospital at around 7. Gavin had fallen asleep on the couch in his ICU room beside me so I propped him on some pillows with the stuffed turtle I had gotten him in St. Thomas and took a picture.
Dr.
Goldthorne came in to talk to us at 7:30. I didn't know she was the pediatric surgeon until that morning. She was cheerful, but serious. She came in with her PA and told us that Gavin would not
be going home for a while. She told us that he most likely had malignant
neuroblastoma. She said that there were effective treatments, chemo and radiation, that it was something that they could "fix". She said we were going to have an MRI the next morning to show the extent of the mass and that
neuroblastomas often have spinal involvement and that the MRI would tell us how invasive the surgery would be and if his spinal column was compromised.
I started crying. I tried not to while she was talking, but I couldn't help it. She put her hand on my shoulder and told me that crying was "appropriate". She said we would have surgery in 2 days. That we wouldn't know what it was exactly until the tests on the "mass" came back, which could take up to a week and that we would be in the hospital at least until then. This was serious, and it was "appropriate" to cry. After she left, we called everyone. I only called my mom, Garth called everyone else. I couldn't talk. I started wandering the halls of the hospital, looking and the people walking around, laughing, smiling, like nothing was wrong. Why was the world still turning? My heart was broken, how could anyone in this world possibly be functioning? Gavin was sick, he could die.
Of course everyone came up to see us, people lined up to feed us, to do anything for us they could. Gavin slept through it all, he had been up all night, getting poked, prodded and tested. He had no idea what was coming. It just wasn't fair.
That night, Gavin started really struggling to breathe. He got several breathing treatments and medications, but he just couldn't breathe. The next morning, they put him on a
ventilator and did the MRI. They left him on the
ventilator because he couldn't breathe on his own. The MRI showed that the mass was completely wrapped around his esophagus and was almost completely occluding his trachea. He also had a large mass of enlarged lymph nodes in his neck. Dr.
Goldthorne said if we didn't bring him in when we did, that he may not have had even a couple of days.
The surgery was the next morning. A thoracic surgeon, Dr. Raine, joined Dr.
Goldthorne. Dr. Raine came out first to tell us that he was doing
ok. Dr.
Goldthorne told us right after the surgery that she could tell it was
neurablastoma by looking at it, so we didn't have to wait a week to know what it was. She put in a port for central venous access because we were
definitely going to be doing chemotherapy. She took out 27 lymph nodes that looked suspicious and she was not able to get all of the tumor because it was right by the carotid artery and it wasn't worth the risk to take it out, but the tumor they took out was the size of a tennis ball.
She told us that the rest of the tumor should respond to chemotherapy. This was when everyone started referring to the "mass" as a "tumor". The pediatric oncologist was on vacation, but she would be there to assess Gavin "soon". Of the 27 lymph nodes, 21 of them were malignant. The preliminary tests on the tumor gave Gavin a "poor" prognosis.
Until then I had tried to stay away from the
Internet. I tried not to look too deeply into what we weren't sure it even was. When I started looking, it wasn't good. We were in the
PICU for 12 days. I can't even remember anything in between. I do know that our family and friends were there for us, even strangers. They all picked up the pieces, even while they were falling to pieces with us. Until the day we were discharged, Gavin had about a 10% chance of survival according to the literature.
Gavin had a few priesthood blessings while we were there. Two of our church leaders came to give him a blessing, one of them has a son that
almost lost his battle with leukemia as a child. He told me something important about the numbers. They are wrong. Gavin either has a 0% chance or 100%, period, that's it. There is no 10% or 30% or this or that. He's either going to make it or he's not, and he is going to make it.
As we were packing up to go home, to wait, the oncologist came in with the results from a doctor in Ohio that sees every single
neuroblastoma and stages them. Gavin was stage 2B, intermediate risk, we would start chemo in 2 weeks. His prognosis went from "poor" to "favorable" in 3 seconds.
So far, we have done 2 rounds of chemo. We have an MRI this Friday to measure the
residual tumor to make sure it is responding to the treatments. It could be gone. We just don't know. Realistically, we still will have 2-4 more rounds of chemo, 21 days apart, with scans after every 2 rounds. Gavin is doing great. He loses weight after the chemo, but he gains it right back. He has
Horner's syndrome either from the tumor, the surgery, the port, whatever caused it, he can't open his right eye as wide as the left and his pupil is much smaller on that side...it kind of looks like he is winking at you all the time. It might go away, it might not. It's kind of cute. Gavin has no idea he is sick.
Garth Lee has been a trooper, he really has. He is jealous of the attention Gavin is getting, but he knows that we all love him the same. He impressed me most when I took him to get his flu shot. Everyone who is around Gavin has to get their flu shot, it's kids like Gavin that die from the flu, that is a FACT. Garth Lee has gotten the nasal vaccine since he was 2, but since it is live virus, he can't get it this year because Gavin could get sick from it just because he has very little immune system. It is rare, but it could happen. We weren't going to tell him that he had to get the shot because of Gavin. I didn't want him to resent his little brother even more. We were just going to tell him that they didn't make the nasal vaccine this year. At the last minute, I decided to tell him the truth. He didn't even blink. He told me he would "do anything for his baby brother". We took him to get it, I was sure he would chicken out, but that boy hopped up on the table, rolled up his sleeve and took it like only the best big brother in the world could. He is a very special boy.
I have been blessed with 2 very special boys, and I intend to keep them both.
