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.
No comments:
Post a Comment