Liam's Fight with Cancer-Chemo #3

The day had finally arrived. Thursday they came to check labs just to make sure everything was still within range and shortly after we were given the go ahead to plan on Friday. Originally we were supposed to have scans at 11am but we received a call from the procedure center that said they were able to get him in at 8:30am instead. Luckily my parents were already planning on being her Thursday night so I didn’t have to worry about shuffling the kids. Only issue was Matt was in Denver for a business trip and wouldn’t be back in time but we decided it would be best for Liam to do scans earlier so he wouldn’t have to be hungry for so long. As a side note can I just say that sometimes it is the small things that make all the difference. This is the first scan that Liam has had both outpatient and since we started chemo so I had a lot of questions. The nurse that called to give me all the information was so wonderful. She spent probably 20 minutes on the phone with me explaining all of the details so I knew what to expect. As a parent things like that make all the difference in a situation like this.

Friday morning Liam and I along with a giant suitcase, 2 pillows, and a basket with a foam mattress and a bunch of snacks/activities headed for Primary Children’s at 5:30 am. I'm always grateful that time of the morning when the roads are clear. It is almost exactly 1 hour to get from our house to the hospital front door. We got checked in and waited our turn. They called us back and got us the contrast that Liam had to drink for his CT scan. Because he had not had anything since 8pm the night before he was totally ok with drinking the contrast that was mixed with apple juice. He made quick work of it and once he drank all of it we had to wait 1 hour for the contrast to get where it needed to be and for it to be safe for him to be sedated for the scan. The tech from CT for some reason thought he would hold still and we should try it without sedation. In my opinion he did really well and held still but he still cried and she said he couldn’t even cry so we needed to wait for sedation. What 1 year old holds still without crying for a procedure unless they’re sedated? A few minutes later they came and we quickly got him sedated and the scan completed.

At that point we were supposed to be admitted for chemo upstairs but there was one problem. The procedure center had forgotten to let the unit know they had moved Liam’s scans up. There were a few minutes of confusion but then they were able to get us a bed. I think it may have worked out in our favor because we got the last bed in the entire unit! Matt arrived from the airport shortly after we got to our room. We landed on K pod for another round except this time it was packed unlike last time where there were only 2 patients on the unit. We waited for a bit while the nurse practitioner got everything ready since we were a few hours earlier than they expected. We met with Kaitlin the NP….we love her. She has been phenomenal. While we were talking she mentioned the CT results were complete and that LIam’s tumor had shrunk significantly!! She pulled the report from the CT scan and we stood and did some math only to find that his tumor has shrunk 61%!!! We were ecstatic. So here’s where the confusion enters. Originally when we were diagnosed we were told we were shooting for over 50% shrinkage and from what we understood that would be the end of treatment and we would then fall into the observation category. So I asked if we would be doing chemo even though it had shrunk that much. Kaitlin said yes and then we were even more confused.

Kaitlin ordered his chemo and went to do some more searching to make sure we were following the right plan. Unfortunately our attending Dr. Verma was out of town and hadn’t left any information to pass on to us. In the meantime they got Liam hooked up to fluids to get him good and hydrated. Fun fact...certain chemos are harder on different organs. With the chemo he would be receiving this round it could be damaging to his kidneys and bladder so keeping things as hydrated as possible is super important. Also once they hook him up to fluids everything changes. He is on less than a 2 foot tether. This go around he is fully mobile and this made it more tricky to keep him busy without pulling on the lines. He quickly decided he liked the car in the hall and we took several walks to keep us and LIam sane. The bummer about K pod is that there isn’t far to go without wearing a mask since it is shared with medical and surgical. Liam was really good at wearing his mask. I think he is sadly learning that when he wears it his world gets much bigger. After a couple walks and some lunch chemo arrived.

They had already given him Amend(long lasting anti-nausea) and a dose of Zofran before we started and the plan was to give him something every 2 hours for the duration of our stay. We rotate between. Ativan, Zofran, and Benadryl. We feel so blessed that so far he has handled chemo like a boss and has had no issues with nausea or even acting like he doesn’t feel terrible. We started Cyclophosphamide and Etoposide about 3:30 pm each ran for an hour with some time for the flushes after. Liam did sleep for a little bit. We also took several walks and found the “library” on the unit with some books and toys we could play with to stay busy. What can one person do in a small room with a busy 1 year old and stay busy and sane. I always pack games, coloring stuff, snack, ect but it all gets old really fast. That night our fellow, Dr Et Atoum, stopped by and she made things more confusing than ever. She said that the scans didn't mean anything and that they hadn’t ruled out surgery or bone marrow transplant. I understand that Primary’s is a teaching and learning hospital but could we please get everyone or anyone on the same page. Both our attending and fellow both speak English as a second language and they can be very hard to understand and to follow what they are saying. Matt and I collectively decided not to freak out and to take what the majority of the other doctors and nurse practitioners had said throughout the day.

That night we did our usual bedtime routine. We did bath time around 7pm then got settled in for the night about 8pm. Each night while Matt got Liam to sleep I would head down to the Ronald McDonald room to shower and just have a minute. The people there are so wonderful. When I got back Matt would usually be working on house plans and watching the Jazz play. We came up with a new design this time where we would put blankets around Liam’s entire crib so he would feel more “normal” in his crib rather than like he was sharing his room with 2 other adults and it also made it more quiet so he didn’t wake up every time the door opened. I would go to be about 9pm while Matt would stay up getting stuff. For the most part we slept pretty well considering the hospital couch and them coming in every 2 hours to change his bum and do vitals. Liam did great and pretty much slept through all the cares until they had to draw labs at 4am but after a quick bottle and cuddle he went back to sleep.

Saturday and Sunday brought a little more clarification when the on call attending for the weekend(Dr. Bruggers) checked in. We expressed our concerns, especially the lack of communication and the conversation on Friday night with the fellow. She seemed a little shocked and explained they were very impressed with how his tumor had responded but per the chart they needed it to shrink more before they completed treatment. Although we were still confused we fully understood that there could have been some issues with how we heard the information or how it was presented because of how much information we were getting and the fog we felt like we were in at the time. The attending promised she was going to correct the communication issues and that there was a neuroblastoma meeting Monday in which Liam would be discussed and we would get a phone call to update us. She did say if that didn’t happen to call Tuesday morning first thing. We did get more good news when they decided they could shorten the 24 hours wait between Liam’s chemo 3 hours each day meaning we would be able to possibly go home sooner if he tolerated it. So Saturday we started it at 12:30pm and Sunday at 9:30am. Sat and Sun he would only get the Etoposide. The rest of our stay was pretty uneventful. Lots of hall walking, napping, and just hanging out. Sunday about 1pm we finally got all the papers signed and everything ready to go home.

We anxiously waited for a phone call but as the day came to a close we weren’t surprised but disappointed that we didn’t hear anything. Tuesday morning after getting Emy off to preschool I called Polly, the nurse coordinator, and asked for an update. She let me know that they had cancelled the neuroblastoma meeting due to the terrible snow storm. She also assured me that she would contact our attending and have her call me before noon. And finally someone that was giving us a realistic timeline. Within a few hours I received a call from Dr. Verma. We talked for 15-20 minutes. She explained further in detail the algorithm that we had been given at the hospital. Although they are thrilled with Liam’s response with the first 2 rounds of chemo he had a good partial response(50-79%) and in order to be moved over to observation and be done with chemo he needed to have a great partial response(80-100%). The next step would be 2 more rounds of chemo and then repeat scans, MIBG(glow in the dark test), as well as the LOEch(another aggressiveness test done with the biopsy previously taken). The combination of these tests/scans will give us the answers we really want. How long will this battle be. No matter what those answers are and what comes we will fight for however long it takes. We are going to do this. I can’t wait to think back years from now to these uncertain times when I sit on the sideline watching our sweet little blonde haired blue eyed boy running the field playing soccer(or whatever sport he wants to play). Waving to me to ask if I saw him score the goal. Daydreaming moments like this are what keep me together some days.

I do need to take a few minutes and tell everyone thank you. We have felt the prayers and thoughts. We appreciate everyone who has helped us in any way. The meals, help with our girls, gift cards, money towards Liam’s medical costs. My parents have basically put their lives on hold to help us through this. I have a hard time trying to find the words to express the appreciation and relief I feel when I know they are here and holding down the fort. It is huge for the girls and for me that they keep our girls schedules as normal as possible. Love you Mom and Dad thanks for being awesome! Thanks for your love and support. You are all so great.

Hallie's Riding the Wave-Paige's Birthday Party

For Paige's 11th birthday she invited a group of girls to go to Flowrider in Ogden and to dinner. They met at Paige's house and did presents and cak before heading to surf. Hallie had a great time although she took a crash during and scrapped her shoulder up pretty good but she didn't let that ruin her fun time. They had pizza after and then headed home. I hope Hallie and Paige will always do their best to stay good friends. Paige was the first one to reach out to Hallie when we moved in and I really enjoy the friends they have become.

Baptism Weekend

It was so fun to have family around so close. We were able to find a condo just 2 down from us to rent. So my mom, dad, Kimber, and kids stayed there and Nic and her family drove up everyday to hang out and do dinner. Matt and I were able to rotate or take Liam over for short visits. It was just what I needed to not feel so isolated. I know that the kids all loved it. We were able to do dinner together every night and various other activities during the day. Saturday after the baptism we took the girls sledding at Amy & Perry's. The kids were all so goofy and excited to be together.

On another night we went hot tubing but the kids are such a handful jumping in the snow then back into the hot tub that we didn't take any pictures. We had a lot of fun until we had to get out....then it was freezing!!

Liam's Fight With Cancer-Eating Eating

We have been so blessed! When we started this journey we were talked to about how important nutrition would be for him and how many kids have to be put on a feeding tube and or appetite stimulants. So far he has been nothing but an awesome eater. He loves rice, taco soup, blueberries, pasta, and cheese. He doesn't seem to care for sugar or chocolate...which makes him totally different from my other kids but if he's going to eat one or the other I'd prefer the more nutritious option. Hopefully his appetite will continue and he will be able to avoid any other interventions to help keep his strength and weight up.

Liam's Cancer Fight-Chemo #3-Cancelled-Port Removal/PICC Placement

Last Friday (24th) Liam was scheduled to have his CT scan at 9:30a to give us a better understanding of how the tumor is reacting to the chemo and to verify the progress. This meant that we needed to be to Primary's early enough to check in, access his port, and get prepped for the CT scan. But due to some concerns we had with how Liam's port was healing, we wanted to get it looked at before they started anything. Let's back up. Here's why:
When the nurse came the day before to run labs, her accessing Liam's port caused it to bleed. After she was done she covered the port with some gauze to help with the bleeding. That night, Natalie went to get Liam ready to get in the tub and in removing the gauze, the scab stuck to the gauze tearing open the scab. It did not look good. Like, you could see the port and beyond, not good. Definitely not an ideal situation given that Liam is immunocompromised and at a greater risk for infection. It was something that needed to be fixed. Luckily, Nat is an awesome mom/nurse and got him taken care of until we could get to Primary's to have them look at it.

Back to Friday. When we got to the hospital, Natalie took Liam upstairs to the clinic to have them look at his port, and hopefully access it if they felt comfortable with how it was looking. I headed to CPC (procedure center) to get us checked in so we could be first in line for the CT scan so that hopefully we didn't have to spend too much time waiting around (this is what they called "foreshadowing") and could get Liam into CT to get it over with.

After checking in I waited for a few minutes, expecting to hear from Natalie saying she was on her way. I didn't hear anything so I text Nat and asked her how things were going. She said to come up to the clinic. I worked my way upstairs and when I go there she informed me that one of the Nurse Practitioners had looked at it and felt like in the condition it was in that they couldn't access it and more than it would more than likely need to come out. She needed to get with her team to get a 2nd opinion just to make sure. Shortly after I got there, Caitlin (another NP) came in and looked it and had the same opinion. She thought that it might have been infected (locally, though, not systemically due to lack of symptoms) based on how it looked, but Natalie and I didn't think it was. She too wanted to get another opinion but also asked the surgical team to come up to look at it to see if they had an opinion. The thought was that they might have to remove the port and either try to place a new one on Friday, or have us come back the first part of the next week to have them place the new port. But before any decisions were made, they wanted more opinions.

About 9 or 9:30, the surgical team arrived and after a quick look, decided that it would be best to remove the port given the condition it was in.

A little backstory to how the port got so bad. When we first found out Liam had cancer, one of the first things they did was place the port while they did biopsies and bone marrow aspirations. The port placement was done by the IR (interventional radiology) team since they were doing the biopsies. We assumed this was normal since it was Primary's and these guys do this all the time. It wasn't until later on that we discovered that IR rarely, if EVER, places the ports, and that it was a new Dr. that came from St. Jude's that did the work. The issue was he placed the port directly under the incision. This put a lot of stress on the suture/incision area and it was never able to heal, especially since they had to access the port a few times a week. Apparently, this is how he was trained to do it, but it wasn't normal for Primary's to do it this way. But how were we supposed to know that??? (Right?!)

The surgical team was surprisingly aware of our situation and it appeared as though several people were up to speed on the port issue. They wanted to make it better so they were trying to decide what the next step would be. With the concern for the potential infection, they wanted to put Liam on antibiotics, but he would need a way to get the medicine. A suggestion was brought up that maybe in lieu of putting in a port, they could put in a PICC line (which is like an IV line that is stitched to the arm). They wanted to get Oncology's opinion because if Liam was only due to have a couple more rounds of chemo, this might be a good alternative to avoid surgery to place and remove another port. Dr Mace (Oncology) came up and looked it over as well and agreed that based on the MYE (a neuroblastoma differential test) results (confirming that the cancer was intermediate risk and not high-risk), Liam would probably need just 2 more rounds that the PICC line was a great option. Regardless of what they were doing to do, it became pretty obvious that his 3rd round of chemo was not going to happen this weekend. This was unfortunate since Natalie's parents had come up from Vegas to watch the kids all weekend. Pushing it back meant another trip.

There was still the question of the CT scan. Would we be able to perform the scan while Liam was under general anesthesia? It made sense from a timing standpoint, but as we later found out, Liam had to "drink" the contrast dye which for someone his age, they administer via an NG tube which happens after the sedation. We weren't told that the last time he had the CT so we didn't even think about it. The issue was they couldn't give him the contrast dye if he was under general anesthesia, only conscious sedation. The team was trying to coordinate to see if that was an option. The conversation became a mute point since CT wasn't able to fit Liam into the schedule because they were booked until 5:00 anyway. This just meant we would have to wait longer to see if the tumor was shrinking.

By about 11:00 we were notified that the Surgical team would be ready for us around 12:30 and that we could head down to Same Day Surgery and hopefully between 1 and 2, we could get Liam in to have the port removed and the PICC line placed. We hoped it would be 1 or 2, but Natalie said, I bet it's closer to 4. Keep in mind, this whole time, Liam was still NPO and hadn't had anything to eat or drink since 8:00p the night before. Hopefully they could get him in early so we could feed him. As we figured, chemo was going to get pushed back until the following week since they were concerned with an infection and wanted Liam on 7 days of antibiotics just to be safe, even though most of the doctors didn't think it was infected. We can't blame them for playing it safe, especially since the oncology team acted like it was no big deal to push things back, but for our own selfishness, we were anxious to get Liam treated so we could move on and put this stage of life behind us. In all reality, we would do whatever we needed to do to make sure we didn't expose Liam to any unnecessary risk and if that meant waiting a week and dealing with antibiotics, we would do it.

While we waited, Liam took a short nap and Nat asked the team about alternative medicine to make sure the oils we were using didn't negatively impact the chemo. After a few hours of hanging out in the clinic and letting Liam enjoy having lots of room to practice his new walking skills, we headed down to surgery and got checked in. Shortly after, they took us back to a little room, they had us give Liam a wipe bath and put him in a kids scrub set/gown for the procedure. They took his vitals and then we waited…and waited…and waited. They came in and said, it will be about another 45 minutes. So we waited some more. 45 minutes passed and they came in and said, it looks like another hour. So we waited some more. A nice nurse came in and helped keep Liam entertained by blowing bubbles and playing with him, but he was getting hungry and more tired with each passing minute. It was around 3 and they came in and said, it will probably be another hour. Are you freaking kidding me? Don't they know there is a 13 month old kid who is tired and hungry?! What a joke!! But we didn't have much choice so we waited some more. Finally 4 came around and still nothing. By now we had migrated our way to the play room so Liam had something to do. Luckily it was a Friday afternoon so the unit was very quiet and we had the halls and the playroom to ourselves essentially. They said, they got an update and that it would probably be 5:15. At this point, we were so over it that until we were actually headed to the procedure room, we weren't getting our hopes up. Luckily some neighbor friends Amy and Perry Keys stopped by to visit and brought Natalie some gluten free baked snacks so she'd have something to eat. Since Liam hadn't eaten, she wouldn't eat either, despite urges from both the Keys and from me. Mom mode had kicked in and food could wait.

For those of you who don't know Natalie, it isn't uncommon for her to focus so much on others that she forgets to take care of herself. But that's who she is. She wants to make sure everyone else is taken care of no matter what. I've always loved that about her, except when it starts to impact her well being. It shows how much she cares about others and how selfless she is.

When they told us it would be after 5, Natalie asked the nurse if it was possible to fit the CT scan in since earlier they had told us they were booked until 5. They said the could do it but they wouldn't quite be ready for us and it would be closer to 5:45. While we waited for an answer on that, the surgical team decided to start an appendectomy so we lost our slot with surgical. When 5:45 rolled around and we were still waiting for the plan on the CT but there was still the issue of conscious sedation vs general anesthesia. The surgeon came in and said she was done with the appendectomy and was ready for us to at least do the port removal no matter what but they were waiting to clear things up with Imaging. A few minutes later the nurse came in to check things. The only one we were waiting on was the anesthesiologist. Finally at just before 6:00, he showed up informed us that they would be doing the CT scan and were ready to go. We loaded everything up and handed Liam over just outside the surgical area and then we headed to find some food.

Natalie and Amy hung out in the cafeteria while Perry and I headed to find real food (Crownburger pastrami burgers…yummm!!!) and a smoothie from Jamba Juice for Liam when he woke up.

Just before we got back with the food, Natalie got a call from the nurse to let us know that because they couldn't give Liam the oral contrast dye, they actually were NOT going to be able to dot the CT scan and that we would have to do it next week. Whatever…..

We ate our dinner in the waiting room and at about 7:20, just as Natalie finally started to eat, we got a call saying Liam was done and we could head back to post-op. He had done great and everything went well. The port was removed, they cleaned up the port site, and a nurse from the PICC team placed the PICC line in his left arm on the inside near the bicep. He was groggy and hungry but we could FINALLY feed him. They tried to give him apple juice in one of their sippy's but it wasn't until we were there with HIS sippy that he finally started to drink it….and he downed it. We gave him a few minutes to make sure he tolerated the drink and then gave him some smoothie, which he loved!! It has only been 23 hours since he last ate but he was finally getting food. It took about another hour or so after to get care training on the PICC line and go over any questions. They also still had our admit orders on the computer so for a minute they thought we would be staying to do chemo but a quick phone cleared it up and by about 8:30 we were ready to go home. 13 hours later, we were finally headed home. All that for an hour and twenty minute procedure.

As big of a pain in the but that it was, there were some good things that came out of this. We wouldn't have to worry about the port anymore, when his chemo was done, the PICC line would save him 2 surgeries and be much easier to remove than the port, and it meant that we would be able to spend the weekend sleeping in our own bed, and not in the hospital (even though the patient rooms are so comfortable)!