Liam's Cancer Fight Day 6-MRI

Day 6 (Wednesday Dec 11th):
The first night of chemo was complete. Everything went well and there were no complications. Liam was a little tired from being woken up every few hours but otherwise he was doing great. Mom and Dad also slept pretty good. A few people had brought some super soft blankets and we slept with those. Definitely an upgrade from the things the hospital call "blankets".

The team informed us last night that rather than do his MRI on Friday with another scan (called MIBG scan) which was the original plan, they didn't want to sedate him that long so they were going to do his MRI today at 1:30. The reason for the MRI was the staff felt like previous imaging showed the tumor was pressed up against the spinal chord and they wanted to make sure the tumor wasn't intertwined anywhere along the spine. If it was, things would be much more complicated. The other scan (the MIBG scan) is a nuclear medicine imaging test. It combines a small amount of radioactive material with a substance called metaiodobenzylguanidine (MIBG) to find certain types of tumors in the body. We nicknamed this one the glow in the dark scan because anything cancerous would essentially "glow" on the screen. This scan was another scan to make sure the cancer hadn't spread to anywhere else in the body. Since his MRI was today he was yet again NPO until he got back.

After taking our morning stroll in the hall, at about 10:15a the nurse came in to inform us that there was an opening in the MRI schedule and they were ready to take Liam for his MRI. We liked that plan since it meant that Liam would be able to eat sooner. We took Liam down to his Imaging and prepped for his MRI. The onesie he was wearing had the metal snaps on it so they found an extra onesie in the unit and cut the bottom off to turn it into a T-shirt so he could stay warm while they did the scan. The anesthesiologist had us hold Liam while they administered the anesthesia. The anesthesia was supposed to make him feel just like he fell asleep. It took a few minutes to kick in and then the immediately took him into the MRI room. 

 

We grabbed some lunch in the cafeteria on the way back upstairs and when we got up to the unit, we ran into Bryan (Indie's dad) again and he said his wife was there so we dropped our food off in the room and headed to their room. We had a great conversation with them where we learned more about Indie's story and how they were doing. They also filled us in on some tricks to make the stay better including what room was the best room.
We were just getting back to the room when some other friends showed up (Breanna, Amy, & Perry). They had brought some food and snacks, a blanket for us, and some cars for Liam to play with. We caught up with them for a while and then Liam was brought back to the room. He was a little groggy still but otherwise was doing great. We started feeding him a bottle and the anesthesia he had made it so his oxygen levels dropped when he ate so we had to do blow-by (like a mask in front of his face) while he ate. He did much better after that.

Not long after our friends had left, Grandma and Papa brought the girls to the Unit for the first time so they could see Liam. They were so excited to see all of us and were all just a little hyper. I couldn't tell if it was because they really missed us that much or because they were going to get to pick something out of the prize bag. One of the things we felt was important was making sure the girls felt just as important as Liam so we decided to have a bag of prizes (toys, candy, etc.) that the girls could pick from when they visit so they didn't feel left out since Liam was getting so many gifts. Once we got them settled down, we started to explain to them why Liam had a port in his chest, what everything was for, and then we explained that Liam had cancer. We expected them to react WAY differently than what they did. We thought that they would get emotional and worry that he wasn't going to be ok. Hallie asked "Is it treatable?" and we explained that there were many types of cancer and this one was very treatable. We asked if they had any other questions and they were like "Can we pick a prize out of the bag now?".

One of the biggest concerns Natalie and I have had through this was not only how it was going to impact Liam, but what kind of an effect it would have on the other 3 girls. Would they need therapy? Would they resent Liam? Would they be worried for him? We wanted to make sure they stayed a priority as well. When someone in the family get's cancer, the whole family does, because it impacts everyone. Seeing that the girls took the news well, Natalie and I felt much better about things. Another answer to our prayers. Every day we saw small miracles happen and this was just another one. This was going to make things a little easier.

The kids hung out for a while, played with Liam in his walker, played in the toy room on the unit, and then we took them on a tour of the Ronald McDonald room and the Kids Zone area so they could see where they could play IF they were healthy. When we got back upstairs, one of our doctors grabbed us and said they got the results back on the MRI and everything looked amazing. The tumor was completely self encased and was not impacting the spinal chord!! Fantastic news!!

Liam: 1
Cancer: 0

The doctor pulled up the images and showed us that there was a clear and distinct separation between his spine and the tumor. We also got a great view of how big the tumor actually was. It really was an avocado sized tumor sitting right in his gut. It's almost unbelievable that we didn't notice anything sooner. It was great news though. Another blessing. Another answer to our prayers.

After a few hours of playing, the girls headed home. It was good to spend time with them and for them to see Liam as his happy little self. We think seeing him that way made it easier to be away from him. There have been a few times this week where the girls have called at night to check in on him or Hallie has called from school at recess to make sure things were ok. We could tell they were worried about him but tonight was good for all of us.

We cruised the halls a little more that night and saw Birdie (Indie's little sister) come strolling down the hall in a remote control Mercedes Benz convertible. When we were with them earlier security came to grab him and said they had a delivery. Someone had donated the car for Indie. It was pretty cool to see people stepping up and helping these guys with the gifts.

We got to bed at a good time again and Liam was ready for another night of Chemo. Tonight would only be 1 bag and it would only take an hour. 2 nights down, 1 night to go.

Liam's Cancer Fight Day 5

Day 5 (Tuesday Dec 10):

After the exhausting day yesterday, we were looking forward to a nice calm day today. Liam slept well and so did Natalie and I. As much as we love to cuddle, Natalie sleeping on the couch and me sleeping on the floor seemed to help us sleep better. When Liam first woke up he was still a little tired so he laid down by Natalie and I. Today would be a good day though. No poking, no scans, and best of all, the IV in his hand would be removed so he could have both hands back! Chemo would start tonight and we could start trying to get rid of the tumor.

Where he wasn't NPO we ordered him breakfast and then headed out to run the halls while we waited for the food. We made some new friends who were also battling cancer. Crew was about 5 years old and was battling Leukemia (ALL) and loved playing with the toys. Indie (3 yr old with Down Syndrome) and her dad Bryan were also out in the hall sharing their yummy strawberry smoothies with everyone. Indie was also battling leukemia (for the 2nd time) but had just received a bone marrow transplant and was almost ready to go home after a month in the hospital. Unfortunately, they had been there so long that they knew all of the in's and out's of the hospital and considered the staff family.

We went back to the room and ate breakfast and finally had his IV removed. Freedom!! We talked to the doctors about what the chemo process would look like and took it easy. I hadn't been home since Friday so I decided I would go home and spend the day with Emery and then be home to take the kids to dance so Grandma and Papa could have a break and run errands. I was going to stay the night at home but with chemo starting we decided it would be best if I came back to sleep in the hospital. Just as I was leaving the hospital, Hillary Evan's, a friend from our ward, stopped by to visit Natalie. I showed her the room and then headed home.

I didn't realize how much I missed the girls until I got home. I travel frequently and so it wasn't unusual for me to leave the girls for several days, but this time it was different. Life was different. Being a dad felt different, but in a good way. I showered and cleaned up and then spent the afternoon playing with Emery. When the girls got home from school, we headed to Ogden to do dinner and go to dance. We went to Wendy's and sat inside so we could talk. I asked the kids if they understood what was going on and if they had any questions. They were concerned about Liam and wanted to know when we would be coming home, but didn't seem to bothered by things. I think for them it was fun to have Grandma and Papa there. Hallie did mention that a kid on her bus had told her Liam had cancer and asked if it was true. We hadn't told them he had cancer yet because we wanted to wait until tomorrow when they came to visit him. We wanted to make sure we were both there to help talk them through what was going on. A few years ago, Gracie had a girl in her class die from cancer and we were concerned with how they would take the news. I gave Hallie a non answer and told her they were still waiting for some tests to come back. They finished their nuggets and we headed to dance.

After dance we headed to Nic's house and Grandma and Papa took the kids and I headed to the hospital. When I got there I helped get Liam settled for the night. While I was gone Natalie received a visit from the Relief Society to catch them up on what was going on. They brought a tote of snacks, lotions, toys, and all sorts of things that were so helpful. She also had a visit from our neighbor Jill. Jill brought him a stuffed animal, a sloth minky blanket, and some treats for the girls. Though Natalie was hoping to get a nap in, she was really glad she had some people to talk with and work through what was going on. This wasn't easy for either one of us but we know that we are surrounded by many people that love us and care about us and it was nice to have the visits.

Tonight would be a long night for Liam. His chemo would start at around midnight with 2 separate drugs, each about an hour a piece. He could sleep through the chemo but to avoid chemo sores on his bum, they would be coming in every two hours to change his bum. Hopefully he would sleep through it but it would still disrupt his sleep. This would be the first of 3 nights of chemo for the first round. That evening they decided to re-do the dressing on Liam's port again because the tegaderm they put on the night before was leaking and wasn't sealed off anymore. Natalie showered while we did this so she didn't have to listen to him scream. Luckily, the nurse we had was much more calm and did a way better job. We went into a separate sterile room and the nurse slowly removed the tegaderm. Liam struggled at first but calmed down as she worked her way around the port. She placed the new tegaderm on and it looked a thousand times better! We got Liam to bed and Natalie went to sleep shortly after. I couldn't sleep so I watched a show on my phone.

Would this be the first of just a few rounds of chemo, or would this be something we would have to do several more times? We still weren't sure if the cancer had spread so we were praying that it was contained to the mass. How would his body handle the chemo? Would the Liam that we've come to love and know be the same Liam or would this change him? My mind raced as I thought about all of the possibilities. Hopefully this would be over soon. I finally fell asleep. Not much later, the nurses came in and hung the chemo bags. The fight had begun. A fight we know we will win.

Day 5 (Tuesday Dec 10):

After the exhausting day yesterday, we were looking forward to a nice calm day today. Liam slept well and so did Natalie and I. As much as we love to cuddle, Natalie sleeping on the couch and me sleeping on the floor seemed to help us sleep better. When Liam first woke up he was still a little tired so he laid down by Natalie and I. Today would be a good day though. No poking, no scans, and best of all, the IV in his hand would be removed so he could have both hands back! Chemo would start tonight and we could start trying to get rid of the tumor.
Where he wasn't NPO we ordered him breakfast and then headed out to run the halls while we waited for the food. We made some new friends who were also battling cancer. Crew was about 5 years old and was battling Leukemia (ALL) and loved playing with the toys. Indie (3 yr old with Down Syndrome) and her dad Bryan were also out in the hall sharing their yummy strawberry smoothies with everyone. Indie was also battling leukemia (for the 2nd time) but had just received a bone marrow transplant and was almost ready to go home after a month in the hospital. Unfortunately, they had been there so long that they knew all of the in's and out's of the hospital and considered the staff family.

We went back to the room and ate breakfast and finally had his IV removed. Freedom!! We talked to the doctors about what the chemo process would look like and took it easy. I hadn't been home since Friday so I decided I would go home and spend the day with Emery and then be home to take the kids to dance so Grandma and Papa could have a break and run errands. I was going to stay the night at home but with chemo starting we decided it would be best if I came back to sleep in the hospital. Just as I was leaving the hospital, Hillary Evan's, a friend from our ward, stopped by to visit Natalie. I showed her the room and then headed home.

I didn't realize how much I missed the girls until I got home. I travel frequently and so it wasn't unusual for me to leave the girls for several days, but this time it was different. Life was different. Being a dad felt different, but in a good way. I showered and cleaned up and then spent the afternoon playing with Emery. When the girls got home from school, we headed to Ogden to do dinner and go to dance. We went to Wendy's and sat inside so we could talk. I asked the kids if they understood what was going on and if they had any questions. They were concerned about Liam and wanted to know when we would be coming home, but didn't seem to bothered by things. I think for them it was fun to have Grandma and Papa there. Hallie did mention that a kid on her bus had told her Liam had cancer and asked if it was true. We hadn't told them he had cancer yet because we wanted to wait until tomorrow when they came to visit him. We wanted to make sure we were both there to help talk them through what was going on. A few years ago, Gracie had a girl in her class die from cancer and we were concerned with how they would take the news. I gave Hallie a non answer and told her they were still waiting for some tests to come back. They finished their nuggets and we headed to dance.

After dance we headed to Nic's house and Grandma and Papa took the kids and I headed to the hospital. When I got there I helped get Liam settled for the night. While I was gone Natalie received a visit from the Relief Society to catch them up on what was going on. They brought a tote of snacks, lotions, toys, and all sorts of things that were so helpful. She also had a visit from our neighbor Jill. Jill brought him a stuffed animal, a sloth minky blanket, and some treats for the girls. Though Natalie was hoping to get a nap in, she was really glad she had some people to talk with and work through what was going on. This wasn't easy for either one of us but we know that we are surrounded by many people that love us and care about us and it was nice to have the visits.

Tonight would be a long night for Liam. His chemo would start at around midnight with 2 separate drugs, each about an hour a piece. He could sleep through the chemo but to avoid chemo sores on his bum, they would be coming in every two hours to change his bum. Hopefully he would sleep through it but it would still disrupt his sleep. This would be the first of 3 nights of chemo for the first round. That evening they decided to re-do the dressing on Liam's port again because the tegaderm they put on the night before was leaking and wasn't sealed off anymore. Natalie showered while we did this so she didn't have to listen to him scream. Luckily, the nurse we had was much more calm and did a way better job. We went into a separate sterile room and the nurse slowly removed the tegaderm. Liam struggled at first but calmed down as she worked her way around the port. She placed the new tegaderm on and it looked a thousand times better! We got Liam to bed and Natalie went to sleep shortly after. I couldn't sleep so I watched a show on my phone.

Would this be the first of just a few rounds of chemo, or would this be something we would have to do several more times? We still weren't sure if the cancer had spread so we were praying that it was contained to the mass. How would his body handle the chemo? Would the Liam that we've come to love and know be the same Liam or would this change him? My mind raced as I thought about all of the possibilities. Hopefully this would be over soon. I finally fell asleep. Not much later, the nurses came in and hung the chemo bags. The fight had begun. A fight we know we will win.

Liam's Cancer Fight Day 4-Surgery

Day 4 (Monday Dec 9):

With the anxiety of wondering what his diagnosis would be now behind us, it was time to move on to the next step; getting Liam better. Monday would be a very busy day. The full team was in the office and it was time to make things happen. To help with lab draws and chemo therapy, the medical team wanted to place a port in Liam's chest above his right pec. For those who don't know, a port is a device that sits between the skin and muscles that has a lead that goes into a vain close to the neck. There are a few advantages. One being that it is closer to the heart so the meds are delivered quicker and another is that we could cover it with clothes so that Liam wouldn't bug it (as much) and it gave him the ability to use both of his hands. The biggest advantage is that Liam wouldn't have to be poked multiple times and worry about an IV going bad. Placing the port would require surgery and for someone his age, general anesthesia. While he was under sedation, the IR (Interventional Radiology) team also wanted to biopsy the tumor to send for testing and future research and do Bone Marrow Aspirations (biopsy) to see if the cancer had spread to his bone marrow (which we didn't want). The whole procedure would take a couple of hours. This also meant another day where Liam would be NPO. We also got a visit from Aunt Brittany and Carson while they were in SLC.

Just after lunch, Natalie and I said a prayer as Nat held Liam. I don't know that I've prayed for something with as much sincerity as I did in that prayer. After finishing the prayer, a calming feeling came over me that everything was going to work out.

At about 1:00, one of the nurses came to get Liam. We all walked him down to the procedure room as he rode in his crib. The special procedure room had a Utah Jazz theme to it with logos, player's pictures and autographs, and many other Jazz items. I may have geeked out a little. Someday Liam will appreciate it!
The team talked us through what they were going to do, instructed us on the anesthesia, and then we gave our kisses and went up to the room. It was the first time that any of our kids had been in surgery. Definitely not something we want to experience to often, if ever again.

Shortly after getting back to the room, sweet Krissy showed up with treats, Christmas decorations, and even some Dr Pepper (the most important part!!). She also brought a neighbor and friend Megan Gibson, mother of JP Gibson. Yes, the JP Gibson who has battled Leukemia multiple times and even signed a one-day contract with the Utah Jazz a few years ago. (#JPStrong). While Krissy decorated the room, Megan gave us a lot of advice about what we would be dealing with from medical terms to support groups, home life and dealing with other people (including insurance companies). It was a great conversation and really helped us navigate the process a little better. She even brought us a memory foam mattress topper and showed us how we can make a bed on the floor as well as the couch so we didn't have to squish on the couch anymore (not that there was anything wrong with sleeping that close to my wife)!

After a few hours of being in surgery, they finally came in and let us know that he was done and we could go see him. When we got to the post-op area, Liam was just starting to come to. Natalie held him as he worked through the medication. Everything went as planned and was a success. We did find out (a few days later) that the IR team isn't usually the team that places the port and that the surgical team usually does it.

That made for an interesting evening.

Shortly after getting back, Aunt Nicole came to visit and check in on us. We took some time to look over everything and the dressing and steri-strip around the incisions appeared to be leaking a little bit and just didn't look right. The Nurses helped us give him a wipe bath to help clean the iodine and dried blood off of his body and they determined that the original tegaderm (dressing that helps seal out any bacteria) wasn't sealed right so they needed to remove the original and replace it with a new one. This meant pulling the tegaderm off the skin (which was super stuck) on an area that was super tender from surgery on a tired, worn out 1 year old, who had a very long day....what could go wrong?

Of everything we had been through up to this point, this was the hardest part. When you have to pin the arms and legs down of a screaming baby who is looking at you with a look of "Dad, why are you letting this happen? Do something!!!", there isn't much more that can break a parent's heart as much as that did. After what felt like an hour of torturing poor Liam, they finally got the new tegaderm placed. Part of the problem was the surgeon placed a tegaderm between the skin and the port (which apparently wasn't normal) and the nurse had to make sure not to pull that tegaderm up when she pulled up the top tegaderm.
I think the nurse was frazzled by the screaming because the new tegaderm didn't look like it was that much better than the original, other than there was less dried blood. I think everyone involved was ready for it to be over, especially poor Liam.

We got him all settled down and he went right to sleep. Between the drugs and the torture, he was ready to call it a day.

Natalie and I made our new beds and weren't too far behind. I slept on the floor with the mattress topper over the couch cushion back, and Natalie slept on the couch. Hopefully tomorrow would be less eventful.

Liam's Cancer Fight Day 3-The Diagnosis

Day 3 (Sunday Dec 8th):

Sunday morning was much more calm than the previous couple of days. With most of the activities needing to wait until the staff was there on Monday, Natalie decided to head home to pack some more clothes, shower, and spend some time with the kids. Her parents had rearranged their schedules and were able to stay and watch our girls for the next week. They had gone to our house the night before to start watching the girls so my Mom could go home.
I decided to get a tour of the unit so Liam and I toured the halls and the nurse showed us the Ronald McDonald room. It was an area in the hospital for patients and families to get lunch or dinner, shower, do laundry, take a nap, or just hang out. The room included an area similar to a family room with books, tv, fireplace, and couches. On a wall was a schedule that showed each day and what donor was bringing in lunch or dinner for that day. The entire month of December was booked! They also showed us an area called Kids Zone where they had toys, foosball, Xbox's, and other crafts and activities for the kids.
I took Liam back to the room for a nap. While he was sleeping the doctors came in and updated us on one of the tests. The levels were not elevated which didn't rule anything out, but it didn't indicate that it was a teratoma or a germ cell tumor. Still more waiting.

After Liam's nap, we headed to the Ronald McDonald Room where a nice little family brought pizza, chips, and cookies as well as a Caprisun (which Liam loved!). I had a feeling we would probably have a few meals in this room.
After lunch I called Natalie and let her know about the results from the team. She felt like that meant it was a pretty good chance he would end up having the neuroblastoma. I didn't disagree but held on the the hope that it could still be a teratoma.
Later that day, Natalie came back refreshed and ready to go. She also brought Liam's walker so he could run the halls while he had the space. He was able to run around the kitchen in our old house but the new condo doesn't have anywhere for him to go in the walker. He loved being able to run the halls and say hi to everyone. The staff loved his laugh and his smile and got a kick out of him cruising the unit.

I will never forget the smile he had on his face as he raced down the halls. He appeared as happy and healthy as ever and short of the IV in his hand you would have never known he was even a patient. It seemed a little surreal still. What if he did have cancer, would this be the Liam we would see over the next few days? Months? Years? I remember thinking to myself "How can something so precious and innocent be put in this position? Pleading to my Heavenly Father that no matter what happened that this not be the last time I see him like this.

I was standing one end of the hall, watching Natalie and Liam when the doctor approached us. She asked if we wanted to go into the room or stay in the hall and we wanted to let Liam stay in his walker so we stayed in the hall. She looked at us and said, "We got the results back from the urine test and the catecholamines were elevated so we now know for sure that he has a neuroblastoma".

Before all this, I always wondered how we would react to being told your own child has cancer. I envisioned rage, anger, sadness, despair, but surprisingly in that moment, other than a brief disappointment in the results, Natalie and I looked at each other and almost immediately knew everything was going to be ok and we were going to do whatever it took to make him better, no matter how hard, how expensive, or how long. We immediately went into "fix-it" mode. Where do we go from here? How do we make him better? When do treatments start?

People have called, sent texts, messages, and gifts letting us know we were in their thoughts and that they were praying for us. I know it was those prayers combined with our own supplications to our Heavenly Father that helped us get through that moment, otherwise, I don't know that we would have dealt with the news that well.

Natalie and I have always done things TOGETHER. Finances, chores, yardwork, it didn't matter - we are a team. When one of us is down, the other picks us up. When one of us (usually me) get's a crazy idea, the other one keeps us grounded. We went back into the room and took a minute to think about what we had just been told. We both knew that, together, we can accomplish anything and that, together, we were going to get through this. We needed to stay strong for Liam. We needed to stay strong for the girls. We needed to stay strong for each other.

We would win this fight!

After letting our friends and family know the news, we decided to get some rest. Monday would be a busy day. We cuddled up on our little couch and somehow, fell asleep.

Liam's Cancer Fight Day 2

Day 2 (Saturday Dec 7th):
Pulling into the parking lot of Primary Children's, a realization sunk in that things were serious. At the same time, I don't think we were fully aware of what to expect. We were under the impression that we were here to do surgery to remove the mass and after a few days, put the whole thing behind us.

Security was expecting us and we were quickly taken to the 4th floor. Whether it was the lack of sleep or complete denial, I found it odd that they were taking us to the "Cancer/Transplant" unit and not the surgery unit. I just thought to myself, "well, I guess that unit must be full". It was about 5:30a by the time we got to the room. There was a little crib, a small couch, and a small chair that rocked. We were told our doctors would meet with us in the morning and that the surgical team would be by later to discuss the plan. They also wanted to do another CT scan, this time of the chest area since the one from McKay was just of his lower gut. This meant NPO (no food) for Liam, who was already drained from the long day, and an IV. Natalie asked if they could put in a longer term IV and the nurse said they would probably put in a port so they could administer the chemo that way in lieu of the IV. Chemo? Wait, what? Nobody said anything about Chemo!! Assuming she was talking about generalities, it was decided that for the night an IV would be ok. The IV that was placed at McKay had already gone bad so this meant that yet another IV would need to be placed. Would we have another traumatic episode getting the IV placed? We weren't sure we could do that again. The IV team arrived and, like the pro's they are, quickly placed the new IV without any problems at all. Maybe we were in the right place after all.
At this point, we were all exhausted. Poor Liam had been through the worst of it. I sat in the chair and held little Liam in my arms, hoping he would sleep better. My neck hurt, my back was sore, and I couldn't find a way to get comfortable, but it didn't matter. I had to be strong. As a Dad and a husband, that's what I needed to be because that's what they needed at that moment. Natalie laid on the couch and did her best to find a few minutes where she could feel well enough to close her eyes. The stress, anxiety, and lack of sleep mixed with her recovery from her fever had started to take their toll.

As the sun came up, we started getting visits from the medical team. They started to explain to us that based on the labs drawn and the CT results, they anticipated the Tumor to be one of 3 types: A teratoma, which is a benign tumor that would have required surgury for removal (best case scenario), a neuroblastoma (a malignant cancer) that would require chemo, and a germ cell tumor which they said was a cousin to a teratoma but it is a more agressive growth which would require surgery and a follow up with chemo. The team was optimistic that it would be a teratoma but needed to draw more labs and wait for what the catecholamine levels were. If one of the blood tests came back elevated, it would be a good sign for a teratoma or germ cell tumor. Alternatively, increased catecholamines meant neuroblastoma. Without those results, the team couldn't be certain for sure. There was still discussion of surgery but we still didn't have a time of when that would be.
Just after that my best friend Tyler showed up to give us some support and his usual comedic relief. By about 10 or so, Natalie's parents arrived and we brought them up to speed on what was going on. Krissy (my little brother's wife) was super sweet and brought us lunch and a few clothes to change into. She had just spent the night watching our girls and had left them with my Mom in Huntsville.
During lunch I had a hard time keeping my eyes open so the staff took me to a dark room where I could take a "quick" nap. As soon as I hit the bed I passed out. A few hours later I headed back to the room, not realizing it was nearly 3:30. While I slept they did the full CT scan around 2:00 and at about 3:00 finally informed Natalie that they wouldn't be doing surgery until Monday. Finally we could feed Liam! Poor guy hadn't eaten all day.

The rest of the afternoon was much more calm and we were left to ourselves to digest what was going on. 24 hrs earlier we had rented a movie hoping for a nice quiet Friday night. Now we were in room 4417 of the Cancer Transplant Unit at Primary Children's hospital just praying for the mass to be a teratoma and not cancer. Only time would tell.
That night, Natalie and I cuddled up on the less than Twin sized couch, too exhausted to care, and too worried to want to leave Liam. We were going to be there for our #LittleLiam.

 

Liam's Cancer Fight Day 1

It's one of the scariest things a parent can ever hear.

"Your child has cancer".

Numb. Disbelief. Pain. Sadness. Anger. Just a few of the emotions we experienced in that moment. Not sure how to respond, we just sat and listened - tried to take it all in, not knowing what the future had in store for us.

So many questions went through our minds. Why Liam? What did we do wrong? What could we have done to prevent this? Should we have caught this sooner? Is he going to be ok? What do we need to do to cure him? How did we get here???

How did we get here?

Day1:
On Friday December 6th, our little Liam was struggling to get comfortable due to pressure in his stomach area. Earlier that morning he started acting like he didn't feel well, and given that Natalie had just been sick with flu-like symptoms, we thought he might just getting what she had. As the day went on, his pain and discomfort gradually worsened. He wasn't eating and wasn't peeing or pooping. Something was wrong. After hours of trying everything we could think of, both Natalie and I decided it was time to go to the ER. After getting admitted around 8pm, they could tell that something was wrong and we weren't just being over reactive parents. The team started doing x-ray's and an ultrasound and it was in the ultrasound that we discovered that his bladder was very full due to something blocking his ability to discharge. To relieve the pressure, they inserted a catheter and after draining 300ml of fluid, he was finally able to relax and fall asleep. So the pain was now gone, but we needed to determine what was causing the blockage. At first glance, we thought it was a solid stool that was causing the blockage. The doctors tried an enema but that didn't seem to effect anything. After some manual inspection that didn't produce any results, the doctor felt it best to run a CT scan to get a better image of what was happening.
This meant placing a bigger IV to allow the contrast dye to enter his blood stream. In what was probably the hardest part for Natalie and I (at the time) to witness was watching them try to get a 22ga needle into his little veins (that were small due to him not eating all day). After several blown veins and what felt like hours of them poking him, they finally got an IV in just enough to get the procedure done.

Exhausted, tired, and still waiting for answers we finally got the CT scan at 2am (Saturday morning). Luckily after two doses of Fentynl, Liam was finally able to fall asleep while we waited for the scan to come back. At about 3:30am, the doctor came in and informed us that the CT scan showed a mass between the spine and his bladder and colon. His next sentence was "We think you need to go to Primary Children's Hospital, and probably right now."

Heart drop.

After determining whether he would need to be life flighted, transported by ambulance, or taken by car the team informed us that we could drive him down on our own and they would do direct admit (no waiting). It was a little comforting to us to know that it wasn't urgent enough that we could drive him down on our own. A small blessing.
At about 4am, exhausted and overwhelmed, we left McKay and headed to Salt Lake to Primary Children's Medical Center. Just a 45 minute drive.

The longest, hardest, and most painful 45 minute drive we'd ever taken. There wasn't any traffic and the fog was thick. The speedometer was working a little harder than normal. Natalie tried to sleep in the front seat while I focused on those white lines and tried to work through what the doctor just told us. Was this really happening? I just wanted to close my eyes and wake up to Liam jumping in his crib with a big smile on his face.

Liam was sound asleep in his car-seat, oblivious to what his world was about to turn into. If only it could stay that way.

Happy Birthday Liam

This picture on the last night before he turned one. I love how he sleeps...on his tummy, with arms above his head, sometimes with bum in the air, or on his side. He is moving all over the place. How did this even happen? I remember last year at this time being so ready to meet him and hold him rather than being pregnant. His birthday was a fun but pretty normal day. We got up and got all the girls off to school and preschool. The girls and I sang to him probably a dozen times and he would just look at us wonder what we were doing. He opened a few gifts mostly the touch and feel books he loves. Matt was out of town so we planned to celebrate over the coming weekend. The girl had dress rehearsal so afterwards we stopped for dinner at IHOP because I wasn't feeling well, We quickly ate and headed home to get ready for bed. After singing a few more times we called it a night. 

He is getting to the fun interactive stage. He waves, crawls a hundred miles and hour, and walks on furniture. He loves to take things in and out of the tree, empty drawers, and explore all spaces. He loves blueberries, pasta, fruit loops, yogurt melts, flavor puffs, taco soup, beans, eggs, sausage, and his bottle. He is still a great sleeping clocking more than 12 hours on average at night and about 3 hours during the day. He loves touch and feel books and climbing in his little leather chair to hang out. He still doesn't seem interested in tv or movies but loves music and has some really cute dance moves. Were looking forward to celebrating more once our daddy gets home. We love you little buddy.