SATURDAY January 2, 2010
This is my day to sleep in. Sam came into the room with Nathan and they both had their coats on. He showed me a lump under Nathan's left ear. "Have you seen this?" I hadn't. He told me that he'd already called the doctor and that he was taking Nathan in.
I prayed because the lump looked really weird. It was huge and hard. Sam called me on the way from the doctors office saying that it was a severe ear infection and medicine was prescribed. The lump was from the infection pushing up against the ear drum causing fluid build up.
So Sam picks up the prescription and they come home. Nathan is still acting normal. Life continues.
THURSDAY January 7, 2010
Nathan had begun waking up during the night. Sam and I have never had an ear infection so we're figuring he'd been waking up from that. We talked to several people who told us they can be very painful and it just made sense.
I went into his room though early Thursday morning and it looked as though he had a stroke...it was very slight, I almost couldn't see it, but something was drooping, so I called Sam in to confirm and again the doctor was called.
Nathan was taken back to the doctor and diagnosed with Bell's Palsey. A condition where the face can become semi paralyzed due to an infection. Also his prescription was increased. We went home and of course I jumped on the internet because I'd never heard of this and I found it. Bell's Palsey can occur after an infection. Makes sense.
The new prescription given was supposed to be a 10 day prescription. I was told he should gradually begin to get better. We were told though that the Bell's Palsey would talk awhile to heal. A follow up appointment was made for January 19, 2010,
THE NEXT WEEK STARTS
Nathan slowly started acting worse. We were told that the prescription would knock out the ear infection and that we could give him tylenol for pain. The fussiness should begin to go down.
Again Sam and I have never had an ear infection and we talked to a lot of people who did that week and they said that they are excruitiating.
Over the next week Nathan quit sleeping. He quit eating. Actually he went in the cupboard and found some old baby food and begged for it and I gave it to him (I didn't even know it was in there). He was being potty trained and doing well at it but he quit wanting to do that.
TUESDAY January 12, 2010
Nathan was walking around the house begging to be carried crying almost constantly...It didn't make sense. Then he went and laid on the couch, something he NEVER does. So I called the doctor and they said to bring him in at 4:00 pm. I got off the phone and called Sam at work. While I was on the phone with Sam Nathan pops off the couch and starts walking around. Ok, I thought maybe I'm overreacting. I've never had an ear infection, maybe I should just wait until the follow up appointment. So I call back and cancel the appt.
WEDNESDAY January 13, 2010
Sam looks at Nathan late that night and questions the movement of his eye. Not sure but it looks like it's moving incorrectly on the side that has Bell's Palsey. Nathan has quit sleeping in his room and started sleeping in between us. His ear infection seemed so bad that we figured we'd let him sleep with us now and just break the habit later. It seemed to be helping him having him sleep in between us.
That night I give him some tylenol and we all go to bed.
THURSDAY January 14, 2010
Nathan is waking up every 20 minutes holding his head crying screaming "Help Baba!" Scares us half to death. We rock him and he's able to go back to sleep.
At 6:00 am we wake up (Sam's working from home this day) and we have a long talk. "Sam to me he's getting worse not better" Sam tells me "But by my understanding ear infections are pretty painful" I say "I know but I'm not comfortable" Sam says "Then we'll call again."
I call his doctor and he tells us to bring him in again, he may be resistent to the medication, which happens. So Sam takes him.
Sam said that when he got there the doctor checked his ear and said "that's funny, his ear infection actually looks better..." Sam told him about all of the personality changes we've been noticing. Then Sam said "Dr. get down in front of him and move in front of him so that his eyes follow you because it looks to us that his eye isn't moving correctly." The doctor does it and Sam said his entire demeanor changed. He said that has nothing to do with Bell's Palsey or an ear infection and he stepped out to make a few phone calls.
Sam was then sent to Marymount hospital for an emergency CT scan. He called me on the way and I started praying. After a horrible week and him saying what had happened so far, I knew in my gut that something was seriously wrong with Nathan.
About 2 hours later Sam called and said "what are you doing? Whatever it is drop it and meet me at Dr. Yeh's office right now, they found something on the CT scan" He said that the doctor doing the scan didn't even let it run for more than two minutes before he shut it down and called our doctor and then told Sam to go back to our pediatricians office because something was found.
I was hysterical. Literally. I called my neighbor and she sent her daughter to get Peyton and another little girl I was babysitting and I did 80 mph all the way to the doctors office.
When I got there the entire office was empty, cleared out for us. The receptionist sent me back to where our pediatrician was with Sam and Nathan. When I saw Sam I knew something was seriously wrong. My husband NEVER cries and tears were streaming.
Our doctor briefly explained that we were to go home and pack our bags and head out to University Hospitals where an Oncologist was waiting. ONCOLOGIST????? WHAT???? Why is an Oncologist waiting for us??? I started asking him what it was they found but he said that they didn't know other than it was a huge mass in his head. Everything else he said was a complete blur.
I remember walking out of that office crying, the receptionist grabbed me and hugged me but I didn't care.
I got in the care and called my father in tears and he said they were already on the highway.
My parents reached the house when we did and got Peyton, we packed quickly and went to the hospital.
We were admitted onto the pediatric Oncology floor.
FRIDAY January 15, 2010
Nathan is put to sleep to undergo an MRI and more detailed CT scan. Whatever this mass is, it's growing pretty fast.
We met a huge team of doctors etc. Cleveland may be known as one of the poorest cities in the country but it ranks at the top in medical care. One of the best pediatric neurosurgeon's in the world is at University Hospitals so as far as medical care went I knew we were in the best spot for this horrible situation...but I still didn't want to be here.
Later that night we sat with the Oncologist and met the Ear Nose Throat Surgeon and his team. A biopsy was going to be done in the morning on Nathan's mass and we had to be told about the risks.
The Oncologist then sat and talked to us. He told us, it's actually unethical for him to tell us this but based on the mass and the way it was pushing through Nathan's bone he's more than positive it's malignant. I broke down crying immediately. I didn't want to hear this!!!!! My son is three!!!!! Cancer!!!!!! This happens to other people! Not us! I planned this family! It's perfect! He has to be wrong!!!!
The doctor left to give us some time to digest this. When he came back he walked in with Dr. Barksdale...(Yes world renowned Dr. Barksdale). Our Oncologist introduced him to us. The reason why they were telling us tonight that they thought the tumor was malignant was because they wanted to move forward with putting in a metaport right after they did the biopsy. Dr Barksdale would do this. What they would do is take tissue samples and look under the microscope and if it was malignant they would put in the metaport (device used for chemo therapy). The reason they wanted to do this is because Nathan's mass was extremely aggressive and growing rapidly. Waiting to put in the metaport would delay chemotherapy. No matter what we had to wait until Tuesday January 19, 2010 when we got the exact name of the cancer but when they come back with a diagnosis they can immediately start chemo. If we wait on the metaport that would delay chemo because we would have to have surgery again to have the metaport put in. It was left up to us.
Believe it or not this was a hard decision for us. I knew before the biopsy that the tumor was malignant. Our Oncologist said he hopes he's wrong and we did too, but honestly I already knew in my gut he was right. But actually moving forward with a metaport was hard for me to accept. We felt like by saying yes we were accepting cancer before it was actually stated, so honestly we talked about this all night. In the end we decided to have the metaport put in. If this turned out to be cancer and if it was as bad as the doctors are saying then we'd rather not have chemo delayed by another surgery so we gave the doctors our consent to put in the metaport.
SATURDAY January 16, 2010
The morning of the biopsy. The Ear Nose Throat doctor came to talk to us before Nathan's surgery and showed us his MRI...
This mass is huge. So big that it's pushing everything in his head over to the right. When we got to the hospital one of the questions we were constantly asked was "how was Nathan breathing at home?" Now I understood why we kept being asked that. Another couple of weeks and he wouldn't have been breathing at all. EVERYTHING was being pushed over. They estimate the tumor hadn't been there long but it was growing fast which is why we saw such a change in his personality so quickly.
Nathan was then taken off to surgery. I started feeling sick. I went out into the hall and I just cried, I didn't care who saw me, it's like no one else existed. I just cried. The week, Nathan had fought me when getting his teeth brushed. I honestly thought it was a toddler being bad. It wasn't though. It was because it really really hurt him to have his teeth brushed. He had been in that amount of pain and I really as his mom didn't know it and that hurt me so bad. I'm supposed to protect him right? I'd made an appointment on Tuesday. Why did I cancel it???? I was inconsolable. Later on a nurse who'd passed me came and gave me a huge hug. She said she'd saw me earlier and didn't want to impose but she knew that I needed that...and I did.
After surgery Nathan was so weak. Our son is strong. He's tall for his age, handsome and he hardly ever gets sick. It was too much for Sam who cried again. I'm not used to seeing tears out of Sam, all of it was so overwhelming.
The Oncologist came and confirmed our worst fears. The Tumor in Nathan was malignant.
SUNDAY January 17, 2010
This was supposed to be a day of just waiting. But at three in the morning Nathan was up crying and I called his name from right in front of him but he wouldn't look at me. In fact it looked as if he was searching for me even though I was holding him. Sam and I called the doctors in and asked them if he was losing his sight, it'd never occurred to me before but suddenly it dawned on me that it was possible for Nathan to lose his sight and that scared me.
The doctors came in and said he could be acting that way because he was disoriented and on morphine but they weren't taking any chances and ordered an emergency CT scan at 4 am to make sure the tumore hadn't moved. There wasn't time to sedate Nathan for it and he did great. Thankfully the tumor hadn't grown.
Later that morning two Optometrist came to check Nathan's eyes. To make sure the left eye was still responding (his tumor is pushing against that nerve) and to make sure the right eye isn't being affected. So far everything checked out good. But he did tell me there is a possibility that Nathan could lose sight in his left eye.
MONDAY January 18, 2010
Nathan has to get a bone scan and a spinal tap as well as bone marrow taken to check and see if the cancer has spread. Also while he's sedated the Optometrist Oncologist is going to check his eyes.
TUESDAY January 19, 2010
Results day. Dr. Amma, Dr. Sterns, and Barb (NP) come in to tell us what kind of cancer Nathan has.
Rhabdomyosarcoma. A rare cancer that strikes only about 350 children a year, most commonlin children under the age of 6. This is a total nightmare. I began to feel so sick. I wanted to wake up. But I couldn't.
Survival rate is 65%. This isn't happening. Nathan's is in a spot that is inoperable. The plan is 43 weeks of chemo and 4 weeks of radiation. Prayerfully the radiation knocks it out or at least minimizes it so much that there's a chance to operate.
WEDNESDAY January 20, 2010
A Pet scan was done to determine if it's spread to any organs.
THURSDAY January 21, 2010
Nathan has his first day of Chemo therapy (from which he got really sick)
TODAY
And that's where we're at right now. Nathan has stage 3 Rhabdomyosarcoma. So far there isn't any evidence that it spread anywhere else, but it's in a very bad critical spot.
It's important to note that his pediatrician never mis diagnosed him in the beginning. Nathan DID have a severe ear infection, he DID have Bell's palsey and Sam and I count those two things as blessings in disguise, if that hadn't happened then who knows how much more this tumor would have grown before we caught it
So here we are. People ask how we are. Our three year old has cancer, we're horrible. It's hard to comprehend and it's hard to grasp. I'm learning what's important in life. We say we know, but trust me you really don't until that life is being compromised. Nothing else matters right now because my worst fears have already come true. Every other problem seems small right now. Nathan's speech problems...not such a big deal anymore. Half the time I don't even know what day it is. All the money in the world means nothing. I only want one thing and that's for our son to be healed. I want him to grow up and outlive me. I could care less about money, no matter how much, I don't care about a bigger house, a better school district. Absolutely nothing. I wouldn't be able to enjoy those things if Nathan isn't here to enjoy them with us.
Know this though, for those of you taking this hard as well. God is in control. Even though it may seem as if He's silent. He's in total control. No matter what He decides, whether He heals Nathan or not, He's still in control. He loves Nathan, more than Sam and I ever could and He hasn't left and He never will. I don't want anyone hearing our situation to start to doubt our faith or your faith in all of this. We serve a mighty God. Bad things happen on this earth and unfortunately they're going to continue to happen. If this hadn't happened to us it would've happened to someone else. And I'm learning there's a TON of Someone else's out there. Truthfully our son's situation can go one of two ways. But I do know that God is loving, He is gracious, He is Alpha and Omega and even though we don't understand all of this we do rest assured that He knows our pain (don't forget He watched His son suffer and die on the cross) and He hasn't left. No one enters into the Kingdom except through Him. God is the only one who can heal. We have a wonderful medical team and Cleveland leads the way with the nations best hospitals but even that doesn't matter if God decides not to heal Nathan. I pray He does. No one prays that more than Sam and I. No one wants to see our children grow up and live life more than us. But NO MATTER WHAT know that God is real, He loves us and He still hears.
God Bless
