February 6th 2013

February 6th was surgery day!

We woke up early again, the neurosurgery team brought the MRI images in to show us, but we had no idea what we were looking at. She told us that the goal was resection, to remove the entire tumor. She didn't tell us what kind of tumor it was or what kind of treatment we would be looking at after surgery.

That morning was hard on Archer. He was starving. After two days of not getting to eat much, he was ready to eat and they wouldn't let him. He was really becoming Hulk at this point. The steroids were making him aggressive and grumpy too. At one point he pushed the call button and yelled at the nurse that he was starving and she needed to bring him something to eat NOW! We laughed because it was so out of character for him, but I know he was hungry too.

They came to get him for surgery around 9:00am. Just Chance and I went down with him. They showed us the waiting room we could wait in, it held about 8 people. We told them we would be staying upstairs on the 9th floor because it was roomier.

From there, we went to the holding room. We snuggled and I sang to him some more. We tried to keep the mood light and keep him happy. He picked bubble gum gas again for his gas mask. Chance went back up to let everyone know what was going on while Archer and I waited for them to come get him. He played iPad for a little bit and then they wheeled him in.

Once he was back I went upstairs so we could move all of our stuff out of the room he'd been in. We took some stuff to the car and someone took some laundry (my sister I think) so that we would have clean clothes to wear. Funnily enough, Archer had tons of clean clothes and was wearing hospital gowns. I didn't pack anything to wear for myself except a pair of yoga pants. 

Once there was nothing else to do, we waited. The waiting room was full of family and friends. You always expect your family to be there, but it was good to know that they were there to just be by our side through such a scary time. My friends who came, you know who you are, I will always appreciate you being there. And my online friends and family who I know would have been there in a heartbeat, sent a fruit basket which we all appreciated. It was perfect. 

They called from surgery around 11:00am to say that everything was going ok, he was stable and they would call again in an hour or so to update. They didn't call back again until around 2pm to tell us they were finished with surgery. The nurse was very straightforward, didn't give any details of how he was so I was petrified. They told us surgery would take around 6 hours and it was no where near that. 

We met the doctor in the waiting room and she told us that everything was great. The tumor was out, but he would need a follow up MRI the next day to be sure. I was so relieved.

After a few minutes we were allowed to go back, one at a time to see him. When I got to him, he was crying and so scared. His head was swollen and the incision and stitches were ugly in comparison to the fluffy blonde hair he had when he went back. It broke my heart to see him like that. It broke my heart to hear him crying and asking for me. He was dozing in and out of sleep, and jumped every time he fell asleep. 

The recovery time was the absolute worst for me. He was moved into an ICU room and I did not want to be in there. It was small and cold and uncomfortable. They were limiting the amount of visitors to 2-3 so I stayed in the waiting room with Foster for most of the day. He needed me too. 

Once Foster left I stayed in the ICU room with him. Chance had stayed with him most of the day, so he took a break. Once he started waking up, it was worse. He flinched every time the nurses came in, the catheter was painful and he didn't want anyone to mess with it.

We spent the night in that room, no one got any rest. Archer was sleeping, but he was waking constantly, scared to go back to sleep. They only had one chair that semi reclined and just a regular waiting room chair, so Chance and I rotated who slept in what. At one point he woke up jumping and shaking, I think from a nightmare/fear and Chance came flying up out of his chair. I think he thought it was a seizure, but he was still half asleep.

I can remember surgery day so clearly. There were some very good times, knowing my friends and family were there to support me as well as Archer. Feeling the love and prayers from everyone, both in person and online. I still say it was nearly tangible. You could almost feel the presence of prayer and love. But it was also really hard. It was the first time I'd seen him in pain and I felt so helpless. Sadly though, it got worse before it got better.

February 5th 2013

MRI day. If you've never stayed overnight in a hospital, you probably don't realize that many doctors like to wake you up to do their morning rounds. The neurosurgery team at OU Children's likes to do theirs especially early, like around 5am. Archer woke up hungry (of course) that day, and he wasn't able to eat because of the contrast dye they use for MRIs. He was so unhappy about being hungry and having to have his IV that he stayed up after the doctors left. It wasn't the greatest start to the day.

I was pretty used to little sleep since Foster was only five months old at that point, but (not hardly) sleeping upright in a chair was pretty miserable. I let Chance rest a little longer and Archer and I just sat watching cartoons. He was getting really restless about not getting to eat and I told him he was turning into the Hulk about it.

They finally came up and got him around 9am for the MRI. We went to the MRI prep room and waited. I let Chance sit with him, and go back with him while I waited in the waiting room. Once Foster arrived I took him upstairs to Archer's room for some quiet alone time.

I had asked the hospital patient care for some tips on explaining what was happening and explaining the surgery to him. She suggested we tell him there was something kind of like a ball in his brain that needed to be removed.

Most of our family came up to wait during the MRI and to see him after. His teacher came to see him that evening and brought toys, notes, and cards from his classmates and other classes. He loved seeing it all.

After getting the MRI, his stomach was upset so he was no longer hungry. He didn't eat anything but a popsicle that evening even though we pushed for him to eat, knowing he couldn't eat again in the morning because of surgery.

Eventually everyone left and we talked to him about what was happening, why he was there and what was going to happen the next day. He didn't really ask a lot of questions then either, he wanted to know if it would hurt, and we told him he would probably have pain, but we didn't know what to expect. Looking back now, I wonder if it was fear or just that the tumor was limiting his ability to think clearly, but it's surprising that he didn't ask more.

The next day was surgery day. I'm sure there's more I could add to this post, but this day was a rough one for me. Not necessarily emotionally, but there was just so much going on, with no sleep, trying to pump and nurse and love on Foster while I had him but also making sure that Archer's every need was met. I can't remember as much, everything feels foggy.

February 4th 2013, Part Three

A barrage of other doctors came through, still asking the same questions. An older (non-student) doctor came in and spoke more at length. Archer was being admitted, they would be doing an MRI in the morning.

Chance and I just sat there, staring at each other, staring at Archer. We didn't know what to do or what to think. Or what to say, how do you tell people news like that? I sent a text to some family members letting them know, and also asking them to pass the information on so I wouldn't have to tell everyone. It was so surreal and such a strange feeling to be sitting in this hospital room, hearing news like this. It was just the three of us, and I felt like it was a dream.

Archer was scared, but he wasn't really asking questions. They came and put an IV in and he was so upset. He was going through a phase where shots and pain were so scary and nearly traumatizing. It wasn't the typical fear of a shot, he was having anxiety about the pain that he thought he might feel. I sang "You Are My Sunshine" like an iPod on repeat, trying to keep him calm and happy. As calm and happy as possible anyway.

That was my goal, my job as his mother. He didn't need to know that I was scared out of my mind or that his daddy had tears in his eyes as he sat behind him. So we held it together, we accepted that this was part of God's plan and he would see us through it.

I left the hospital when they were moving him to a new room so that I could go see Foster and nurse him before he went to bed. My mind was racing in the car alone, had I done this? My grandma and all of her siblings had cancer. Were my genes causing this?

After praying and then seeing and holding Foster, I felt better. It was like a weight had been lifted. I prayed for peace and acceptance, and I got it. I went back to the hospital renewed and ready to face whatever was coming.

He could only eat until midnight because his MRI was scheduled for the next morning. At this point he'd only had a few chicken nuggets and then he fell asleep before he could eat much else. He was miserable with the IV in his arm, but he actually went to sleep and slept for a little while. He was extremely restless though, and woke up early when the doctors came in for rounds the next day.

So that was our first day, to the best of my knowledge. I'm still working on the following days posts, trying to keep the memories separated by day.

Here is the post I wrote last year after he was admitted.

February 4th 2013, Part One

And again, other posts from Archer's Journey.
February 4th 2013, Part Two: Looking Back
January 29th
The Week After
January 22nd
January 6th

February 4th 2013, Part Two: Looking Back

One year ago today. It seems like a life time ago, not just one year.

I took Archer to school and then went back to get him for his 10am appointment. He was excited and hopeful that he was going to get glasses. Once we were back, the doctor stated the his right peripheral vision was unresponsive, and that he thought we should go somewhere ASAP to get scans done. He said he wouldn't wait until the referral from children's hospital.

I took him back to school and talked to Chance about what he said. I googled all of the symptoms as a whole and talked to a friend who is a nurse. I knew it wasn't something I could keep ignoring. I called the family doctor back and asked the nurse if we should go to a local hospital or wait and she said "No, go to Children's Hospital now." So after having three different medical professionals confirming my gut instinct, I packed a bag for Chance and Archer and we went.

We stopped at McDonald's to get some chicken nuggets since he skipped lunch while at his doctor's appointment. We stopped to drop Foster off at my cousin's house and then headed to the E.R.

I was expecting to sit in the E.R. waiting room for hours, but after we were checked in they called him back quickly and sent us to an exam room right away. From there we waited about 30 minutes while multiple doctors and students came through asking us the same questions over and over.

Eventually a doctor came through and told us that we were headed for a C.T. scan. It was an open machine and took less than five minutes. Then the waiting began again.

I can still clearly remember the next doctor that came in. He spoke very heavily accented English, but I could tell by the look on his face that it was serious.

"The C.T. is showing a large mass."

The one thing that I understood.
.

Vision Changes

More back story, things that were starting to fall into place and create a bigger picture than when we were just seeing individual symptoms.

Archer failed a vision screening in October of 2012. We didn't have insurance at the time so I didn't take him until November to get his eyes checked. When I went, I mentioned that he had failed a vision screening so we were just there to get his vision checked. The optometrist said that his vision was ok, within normal limits for his age.

Leading up to February, another major symptom Chance and I as well as his teacher noticed was that he was running into things. He was constantly having black eyes, but only on his right side. He ran into the living room door knob on a daily basis. He ran into the teacher's aide's finger at school and got another black eye.

Chance and I were talking a few days after the last doctor's appointment and he said, "But it's not his vision, it's peripheral vision. He can see anything in front of him, it's his peripheral vision." Lightbulb. I sent a Facebook message to a high school friend who is training to be an optometrist and he said that peripheral vision isn't typically checked in children at a routine check up. I was almost buzzing at that point. I immediately called the first optometrist again and made an appointment for Monday, February 4th.

This will be my last post until that day, and I'm hoping to have multiple posts that day, at least two parts.

Other memorable dates from Archer's Journey include:
January 29th
The Week After
January 22nd
January 6th

January 29th, 2013

After seeing one doctor on January 22nd, we went back and saw another doctor (my family doctor) on the 29th. My mom went with me because she's bossier than me and would be thinking of things that I might forget.

He started with asking why we were there and then what all was going on with him. We explained that his arm/hand had some muscle weakness and that the last doctor had noticed an issue with his gait. He marched Archer up and down the hall, had him do some push and pull exercises, and checked him all over.

Then he just stood there looking at us. He said, "Honestly, I have no idea." He refused to speculate. I think in that moment he knew, but he didn't want to say because it was outside his specialty. He set us up with a referral to Children's Hospital, but wasn't really that urgent. He said it might take a while so to keep checking with them.

He also commented that he was blown away at what the other doctor said. He just couldn't image why he would say that. But he knows the other doctor and I think he was respectful in how he handled the whole situation. I was really worried that he would just take his word for it and send us home.

We left that day with no more answers than the first doctor's appointment, but knowing that we would be getting a referral to Children's and that answers were on the horizon it really did help.

Other memorable dates from Archer's Journey include:
The Week After
January 22nd
January 6th

The Week After

We stewed on the information and diagnosis (if you could even call it that) the doctor gave us, for a few days. I knew that what he had said wasn't right. I didn't walk out of that office with an overwhelming feeling of relief and I just knew that meant it wasn't right. I didn't know what was going on with my little boy, but I knew I couldn't accept what we were told.

I didn't go to a different doctor right away. The doctor we saw had been his pediatrician since Foster was born. We liked him. He was a good doctor. He was efficient (in and out in 30 minutes at the most) and was warm and friendly. He always made jokes with Archer and it felt like we were going behind his back to talk to someone else. The other part of that was that I knew that all the doctors in the area knew each other, I wasn't sure what to do next or how to approach it.

We finally settled on seeing the doctor in our town, the family doctor I have gone to all of my life. The appointment was made for January 29th.

And while I hate to leave you here, I'm trying to stick to the dates things happened, both to keep the memories from crossing each other, but also having a specific place that the dates are recorded as well.

Other memorable dates from Archer's Journey include:
January 22nd
January 6th

January 22, 2013

It's been one year today since we saw the first doctor, concerned about Archer's list of symptoms that continued to grow. It was easy to think a few things were unrelated but as they all started to come together, there was no avoiding the inevitable.


We were thinking all kinds of things including Bell's Palsy (which fit more than one symptom). What we were told by the doctor was not expected. The doctor was very brief, came in, looked him over and concludes it was a form of Cerebral Palsy, not something we should be too concerned about and he'll grow out of it. I'm not an expert on CP, but I was pretty sure it wasn't something someone grew out of, and he was too old to be newly diagnosed with this disorder, especially since he had been typically developing until very recently. We walked out of that doctors office with more questions than answered, completely unsatisfied with what we had been told, but still unsure about what to do next.

Part one of the Archer's Journey series can be found here.

January 6th, 2013

You might wonder what's important about that date. It was just a regular Sunday in January. There was snow on the ground, but it wasn't bitterly cold.

We slept late that day, Archer had been up several times that night and I was worn out. He came into our room around 11 and laid down for a little bit, then he said he was going back to his room because he didn't feel good. He vomited twice on his way. He said he had a headache, but I was chalking it up to not rnough sleep and maybe a little bug. 

At that time, the only other symptom was his hand. He had this weird little way of holding his hand, not using it, and almost dragging it along behind him. It wasn't that bad, just yet, but something was different. It wasn't enough of anything to really be alarmed, but we were becoming more aware of everything that was slowly unfolding. 

We definitely weren't ready for what was to come.

January 6th, 2013

The Lady in the Waiting Room

Yesterday Archer had a follow up MRI, his fourth in a year. The whole process has become pretty routine to me. The first time was a little scary and frustrating and unknown. Now I make sure my phone and iPad are charged up and I consider it a little down time. They typically schedule his in the morning since he can't eat or drink after midnight. We get there, wait our turn and then once he goes back and is sedated I'll grab some breakfast and sit in the waiting room with a book on my iPad.

Yesterday as I was getting ready for them to call me to see him afterwards, I noticed a woman who came in the radiology waiting room with tears rolling down her face. I can still remember that first MRI. I can still remember the whirl wind of everything that was happening, everything I was feeling. It was so overwhelming. I grabbed Foster and we went to Archer's room for some quiet time while everyone waited in the waiting room to hear news.

I was torn, yesterday, between reaching out to this woman and giving her space. I ended up just letting her be. She was busy texting person after person on her phone, and I know what it's like to have to get information out to concerned friends and family. I still wonder though, if maybe I should have gone to sit with her or offered to pray with her. Just let her know that she wasn't alone. I'll definitely say a prayer for her tonight, and hope that she and her family are at peace with whatever is happening in their lives. And since that's all I can offer, I pray it's enough.

Archer's Journey, One Year Later

It's been one year since we started putting pieces together and realizing that something just wasn't right. I'm going to be posting about milestone dates and just reliving some of the days and moments we went through as a family and the things my brave little boy went through. I want to remember these things but I also want to be able to tell him his story as well. He remembers somethings, and he has a little bit of insight, but he doesn't remember everything and I know his memories will fade as he gets older.

Posts about Archer's Journey:
Vision Changes
January 29th
The Week After
January 22nd
January 6th

Author's Note: The earlier posts will be short so that I'm not adding information that we didn't have at that time. I wish I had been writing this down as it happened.

Hospital Timeline

We were admitted Monday night, unsure of our future but certain that Archer would have an MRI Tuesday morning. It was a restless night for all of us, but especially him.

Tuesday morning came early, 4:30 for Archer and I and brought a neuro surgery team. There were 4 or 5 of them. They addressed Chance and I, didn't introduce themselves to Archer, and told us surgery would be at 9 the next morning. He went down for his MRI soon after, and we waited for results all day. We didn't hear anything.

Tuesday night was sleepless for me, wondering and worrying. The MRI would determine if the spinal column was clear and it was frustrating to know that someone had the answer to that question and they weren't telling us.

Wednesday morning came early again, the 4 am vitals check woke him for the second day in a row. Around 8 the neuro team came in again, after my family arrived and showed us an MRI of a very large tumor above the left ear, spinal column was clear. My first little breath.

They took us back to holding before surgery soon and our little guy was too quickly being pried off of me and taken into surgery. The wait began. It was estimated at 6 hours.

We sat in the waiting room surrounded by family and close friends. It was an amazing feeling, knowing that so many people cared so much for us to sit vigil while we waited for news.

Less than 4 hours later the nurse called. Her voice was neutral when she said, "They're closing up, if you want to go to the third floor Dr Gross will be in to talk to you." My stomach dropped. It was too soon. She didn't say anything positive. She didn't say he was stable, she didn't say it went well.

Chance and I went down stairs to wait. It was the longest 30 minutes of my life. Then the doctor walks in with a smile and I breathed in for the first time in hours. The tumor was out, my baby was fine, she believes it's benign. Relief flooded through me and Chance says I exploded verbally. I felt it happening, but I couldn't stop. I didn't know what to ask, but I wanted to make sure she wasn't going to change her mind.

We were allowed to go into recovery one at a time. He was crying when I got in there, and that was a helpless feeling. He was so afraid and I just wanted to get in bed with him and hold him. I was scared too. He looked different and had this scary incision mark and I couldn't help.

I followed him up to the PICU and then we waited again. Waited for him to wake up and be well enough to move to a regular room.

He didn't really wake until late that night. He was in pain and he was upset. He was scared of the nurses and doctors. He flinched when they came in. We got no rest.

Thursday brought another MRI and a move back to a regular room. The second MRI was clear, the doctor had gotten the entire tumor out. I breathed again.

We had more visitors that night, and he seemed to be doing ok. Then Chance decided he was running a fever and he had to go home. Archer slept very little and jumped like he was falling every time he went to sleep. I slept at the foot of his bed because he needed me close and I was afraid of hurting him.

On Friday the swelling became worse. He withdrew, his speech was affected and he was scared to pee. His pain seemed low, and he was only taking Tylenol. He had lots of visitors, but he wasn't interactive. The physical therapist came and brought a wheel chair for him to tour around in She made him walk from his chair to me and sit in my lap out of bed. He still hadn't eaten and they wanted him to eat something. He decided he would rather climb out of the chair with me than eat. It made me giggle because he said "Go away." to his tray and pushed it. Then he started sliding out of my lap in an effort to get in bed. Then he told me to go away because he didn't want me telling him to eat. The speech path came by and checked his swallow, which seemed normal. He just needed to eat. Later that day he said he was hungry, he just couldn't find the words to tell me what he wanted. I made a picture album on his iPad so he could point to some food items, still nothing. Chance's cousin came by that night with his favorite kind of apple sauce. I had tried a similar one early in the day, but it wasn't our normal brand.

Saturday Chance came back, bringing more applesauce. We had tons of visitors bring every food imaginable, but all he wanted was the GoGo Squeeze applesauce. By 6pm he had eaten a small box of them and tried a few other things. My cousin went for more. That night he was still having a hard time expressing his needs and he was still in constant fear of moving his IV arm and the nurses.

Sunday morning was the best. He ate his breakfast, drank some milk, had a few bites of eggs and biscuit. And more applesauce. When the doctors came by they said they saw no reason why he couldn't go home. We were ecstatic. We got some lunch and waited for my family to bring Foster and help us load everything we had accumulated. His speech was slowly improving and he was getting up more.

It was the end of one journey and the beginning of another.

Stay tuned tomorrow for the emotional side of this timeline.

February 4th 2013, Part One

Today the bottom of my world fell out from underneath my feet.

After weeks of him just not quite being himself, we took our oldest son to the emergency room at Children's hospital for some tests. We were triaged in quickly and within two hours had a ct scan and terrible news.

He has a large mass on the left side of his brain. We don't know anything else at this point.

I feel as though someone punched me in the stomach. Hard. I don't want this for my little guy. I want him to grow to be big and strong and not have to deal with this pain and fear. I want him to be happy and healthy.

I am so scared. How do you tell other people that your baby has something like this happening? How do you recover? I'm so heartbroken and sad, but I know more than anything he needs a strong happy momma. So that's what I'll be for him.

(Write's note: I wrote this Monday night at the hospital, I just wanted to make sure everyone knew before I shared it.)