Liam's Fight with Cancer-New York Here We Come & Getting Settled

 

 

 

 

Hello all we made it to New York! We flew out Saturday about 1pm and had a short layover in Denver before getting to New York. Liam did great on the flight and slept for the 2 hours of the longer leg of our flights. Our bag of trick aka diaper bag with new and random toys and treats worked well the remainder of the time. We were very happy we purchased Liam his own seat so he could be strapped into his carseat for parts of the flight and I think he enjoyed having some of his own space too. We landed Saturday night about 9pm and by the time we got our bags and hiked to where our Uber could pick us up it was just about 10pm. Strangely we were exhausted, even though in our heads it should have felt like 8pm since that’s what time it was in Utah. Regardless we got to the Ronald Mcdonald House just after 10pm. Guys I love New York, mostly in pictures. The traffic, how small everything is here, and the inflated cost is just too much for this simple girl who likes her space. Our Uber from the airport was over $50 and then we ordered burgers for dinner and they were $40 but at this point we didn’t care we were exhausted and starving.
The Ronald is nice and we’re grateful to have an inexpensive place to stay. In our room, which was extremely clean by the way. I brought an entire container of Clorox wipes and wiped everything down and was pleasantly pleased with how spotless it was. Anyways there is a dresser, tv, desk, chair, and 2 twin beds. Luckily I had done some research and knew this so I bought king size sheets and a mattress cover so I wouldn’t have to sleep in a twin bed with my hubby. They said they would provide a crib for Liam but when we got here they were unable to lock the room with the cribs in it...strange. So we made him a bed on the floor with about 6 blankets, a mattress cover and a crib sheet. He didn’t love it so he ended up sleeping with us for most of the night. This was a first for us and one that I hope to not frequently repeat. I did get him to sleep in his bed for a couple of hours before he woke up and was probably terrified not knowing where he was. Tonight, after making some adjustments, I'm happy to report he is asleep in his bed. I'm hoping it will stay that way so we can all get some good sleep tonight. Hopefully tomorrow they’ll be able to get the crib closet unlocked so he doesn’t have to sleep on the floor anymore.
Today was a very relaxed day. We slept in, met up with Erica from Candlelighters to get a stroller for Liam and she graciously gave us some gift cards for a local grocery store and restaurant. After a short nap and a tour of the Ronald(we were too tired to do it yesterday) we headed out to get some groceries. Although the Ronald provides dinner 6 nights a week they have 5 kitchens for all the guests staying here for other meals. Each room has an assigned kitchen and a bin in the fridge and freezer for our stuff. We had a little bit of sticker shock as we picked out groceries...another reason to only visit here. We bought a pound of organic strawberries and they were $9.99! Thanks heavens for the generosity of Candlelighters in helping us get settled. Since Matt and I were fasting today, we came back and fed Liam and then it was naptime again. Matt and I were happy to join him and we all got another good rest in. I'm not sure if we are making up for lack of sleep or trying to bank it for the coming days. Either way it was nice.
The weather here is beautiful. As we went for several walks today we saw people bundled like they were freezing and laughed to ourselves when the girl at the front desk asked if we were freezing. It was about 55 degrees here today and that’s 10-15 degrees warmer than we’re used to. We’re looking forward to a few more days of sunshine before the rain comes here. They have a sundeck on the 7th floor and a wellness center on the 11th where you can take in the sun. It has felt so nice to be outside again. I’ve missed the sun. Oh and to make things even sweeter the Ronald has an ice cream chest that gets filled daily with lots of yummy ice cream bars/sandwiches...this could be trouble. What better to put your mind at ease than eating ice cream in the sunshine?
Originally tomorrow was supposed to be full of hospital stuff but due to a scheduling issue everything has been moved to Tuesday. Honestly, this hospital is amazing...let me explain. Liam had a Ct scan after chemo round #2 at Primary Children’s but since having chemo #3 has had no further scans. So before surgery Dr. Gerstle wants a new scan. Unfortunately due to the short notice they were unable to fit him in Monday but could get him in Tuesday. At that point they decided to move all of his appointments to Tuesday to make it so he wouldn’t have to not eat for so many days in a row. As a parent I find this extremely considerate and I appreciate that. So tomorrow we will probably venture out and do some sightseeing and then Tuesday we will go in for blood work, Dr consultations(both surgeon and oncologist), CT scan, and do his bowel prep for surgery Wed.
Thank you Liam’s Amy for being here for us. I can’t explain to you how much strength you give us.

 

Liam's Fight With Cancer-Nixon Strong Foundation Gift Box

We were once again touched by a cancer family wanting to share some love.  Although they got Liam's name wrong we had a good laugh but really loved the gifts. There were so many things fun things in the box and what a fun surprise at our door. 

The mom even wrote me a note and sent a few things for just me.

I want to be able to give back like this someday once we get thru all of this with Liam. It has meant a lot to us and our family. Our girls loved specifically that they received something in this box.It was definitely a win.

Liam's Fight with Cancer-First ER Visit & Finally Some Answers

Answers...finally some answers! The day we have finally been waiting for. Tuesday was more exciting than we had even originally planned. At 2:30 am Liam woke up with a fever of 101.1 and although if it had been any of my other kids I would have just put them back to bed or if they acted uncomfortable give them some Tylenol and back to bed. With cancer and chemo that changes the standards and any temperature of more than 100.4 lasting more than 2 hours or anything over 101 merits a phone call to the oncologist. I called the oncologist and she told me I needed to bring him in but I could take him to McKay and she would call ahead and let them know what she needed them to do. Matt was out of town in Atlanta so I called our sweet friend Amy that has been so helpful, supportive, and present through this entire process. She answered right away and came right over. I loaded Liam up and off to McKay we went. We arrived about 3 am and got checked right in and taken to a room. They drew labs(CBC, viral panel) and cultures, took an xray, gave Liam a bolus, a dose of prophylactic Rocephin(antibiotic), and attempted to get a urine sample with a bag. Although we were there for several hours things seemed to move pretty well. In the end they found absolutely nothing! And although in some ways I was relieved I was still concerned about what might be going on with him but honestly he is 14 months old it could be teething for all I knew. About 5:30 am they sent us home and just after 6 we all got settled back in for bed. Liam continued to have a fever throughout the day. Thankfully he was eating, peeing, pooping, and acting for the most part pretty normal for him. Since all of his labs had been clear I was now able to give him Tylenol. It took care of it very well.

I was still anxious to hear from Sloan Kettering after the afternoon tumor board meeting where they would be discussing Liam. About 2:45pm I received a call from the surgeon Dr, Gerstle and a few other nurse practitioners wanting to let me know how the meeting had gone. He said they had unanimously felt like it was time for Liam’s tumor to be removed. He said they were very impressed with how it had shrunk and now would be safer to remove. He then went on to explain everything about Liam’s tumor in full detail. He explained where it was positioned, the challenges it would present with surgery but that they felt confident they could take it out safely. Dr. Gerstle is the chef of pediatric surgical services and has come very highly recommended. He only does neuroblastoma tumor resections and as you can imagine is very experienced and skilled. I was overwhelmed with all of the information but luckily had taken notes. Liam’s tumor is resting in his lower abdomen like a uterus does in a woman's body. It rests on top of some significant arteries, veins, and nerves. During the surgery a neurologist would be present and would be monitoring the nerves using intraoperative nerve monitoring. That way they can make sure not to cause any avoidable damage. This may mean they might not be able to get the entire tumor if it is wrapped around those nerves. Liam will need to do bowel prep as another precaution in case anything gets nicked it can easily be fixed with an empty bowel. Dr. Gerstle had just given me more information about Liam and his neuroblastoma then we had received in months. I was both grateful and terrified. After answering a few of my questions he closed the conversation by telling me that after the surgery they weren’t planning on any other chemo! This is what we were really hoping for and was such an amazing thing to hear. He said to call his office with any more questions but otherwise he would plan to see us Monday morning in New York for our consultation and surgery would be Wed Feb 26th.
Now the work really began we had to book flights, a place to stay, get arrangements for the girls made, update family, figure out when to leave, and of course pack. I immediately updated Matt then called my new found friend Jen, she is a God sent. She has been so wonderful! She helps answer all my questions, sends me multiple resources, but most importantly she calms my mama heart and encourages me to trust myself and the decisions and feelings we have made and had about Liam’s treatment. She is so genuine and awesome. Since she has been through it she just gets the thoughts and feelings I am having.

Later Tuesday, thanks to Amy, Liam and I received blessings. They were just what I needed. In Liam’s blessing he was told that through faith he would be healed and his fever would go away. And sure enough his temperature never went back up after his Tylenol wore off. I went to bed that night with so many emotions. I was definitely more than ready for Matt to come home.

Wednesday Liam was back to himself minus being a little fussy and clingy. Matt made it home and we were able to set some plans and I started making some phone calls. We got our flights booked and decided to get Liam his own seat so that we had some more space and then others wouldn’t be sitting so close...I'm still terrified of him getting sick. I was on the phone most of the day. I called Rosann at Primaries to let her know we would be going to New York for surgery therefore cancelling chemo for the weekend. She seemed surprised that we had a consultation as well as a surgical date. It was a phone call I was nervous about how it would go given the bumpy road we have had with them. I got off the phone feeling good about where things were left and that we should be able to work together, if we choose, to do Liam’s follow up and scans in the future. Later in the day I got a phone call I never thought I would get. It was Dr. Verma from Primaries she wanted to discuss our plans with Liam moving forward. She was very concerned and stated that we were putting Liam’s life at unnecessary risk by doing surgery. She seemed very frustrated that we had gone looking for a 2nd opinion but what were we supposed to do. We were 2.5 months into this terrible path they call cancer and still had no concrete answers, a plan with a timeline, and the communication was terrible. She continued to explain that chemo would more than take care of the cancer and that they were hopeful that he would only need 4 rounds but wouldn’t know until they did new scans and received more test results back. She stated that surgery was very complex and unsafe at this point. That we didn’t need to endanger his life. She offered to let us talk to Primaries Neuroblastoma specialist but she reassured me he would only agree with her. She suggested getting a 3rd opinion from Seattle Children’s and once we saw that they would agree with Primaries we should then proceed. After I got off the phone I totally broke down. I had so many questions and for a few moments was questioning if what we were doing was right. No parent wants to put their child’s life at risk but we felt so strongly that we were doing the right thing for Liam. I immediately felt like I should call Jen and just like always she answered and totally called me down. She pointed out several very logical and valid points and thru that I was able to get my head back to the peace I have felt with Sloan Kettering all along. I know surgery won't be fun or easy. It's going to be scary, painful, emotional but chemo is all those things too. So the only thing we can do is go forward with faith. Following our hearts.

Thursday morning I was able to talk to Dr. Basu(his oncologist at Sloan Kettering). I explained to her what had happened the day before and asked her to explain in more detail how tumor board meeting had gone. She said the decision was unanimous. Both surgeons felt confident in removing his tumor. They all felt like his tumor had shrunk to a safe size after 2 rounds to remove it. She said that if they had felt the tumor was unsafe to remove they would have suggested just watching him and waiting to see if the tumor would continue to shrink on its own. She said he had definitely received all the chemo he needed. We talked about a few other details and discussed when we would meet in person. We talked about her 2 “kids” one a child the other a dog. I mean so far the bedside manner of these doctors is unmatched and something we have been impressed with from the beginning. They take the time to get to know us and Liam, they answer the questions and are straight forward. In all fairness I did look into Seattle Children’s. They don’t specialize in Neuroblastoma but in Leukemia. If there was ever going to be a place we would need another opinion it would be at The Philadelphia Children’s hospital.

At this point everything is in place. My parents have graciously put their lives on hold, especially my sweet mom, to come and stay with our girls for the extended period of time we will be gone. The expected time frame is just over 2 weeks. It all depends on how Liam tolerates everything. We are going to be staying at the Ronald Mcdonald house just 5 blocks from the hospital. There is a group called the Candlelighters that allow us to borrow a stroller so that's one less thing we have to pack. People have been so helpful. And although our cancer journey will never technically be over. There will always be scans and tests to make sure it hasn’t returned. I'm hoping this will help to put the worst of this trial behind us.

At this time we will be having a fast for Liam. This coming Sunday the 23rd before surgery. We would appreciate your continued love, support, and prayers. For not only our family but for the doctors and other medical staff whom we will be trusting to take the best care of our sweet little Liam. We will also be praying for continued health for all of us but especially Liam as we continue.

 

Happy Love Day

This year for Valentine's we decided to do things a little different and buy activity kits from Kiwi Crate. The girls were so excited for their surprises and the activities even more. I think it may be something we continue to do. 

Gracie got a portfolio to build

Hallie got a spin art thing

Emy got to build an arcade game

We even ventured out for the first time since treatment started. The library in Huntsville is amazing and really so quiet. We were the only ones in the library other than the workers. Liam wore his mask but loved running around everywhere. It was so nice to have a little freedom and still keep everyone safe

Liam's box included several little wood toys and sorters.

It was a quiet but fun day. We did heart pizza for dinner and watched a movie. It was a great day spent with those we love the most.

Liam's Fight with Cancer-Go Jazz & Scars

We have talked about getting Liam a Jazz jersey for some time and so we finally decided to pull the trigger. It looks so cute and I wish we'd have done it sooner. Although at this point he hasn't gotten to attend a Jazz game I look forward to that day and the many memories that will come with it.

                                                

Liam's scar from surgery to remove his port is healing well and looks pretty good. I think he will have a scar that will never go away but we're just glad that he is doing so well.

This monkey was given to Liam by one of my coworkers when he was diagnosed. He has grown to love it and really no other. It is a warm pal which means it has beads inside that makes it weighted and it can go in the microwave. And although he doesn't care for it warm he loves to cuddle that thing and carry it all over the house. I finally caught some pics of him loving it. The sock on his arm is covering his PICC line.

Liam's Fight with Cancer-AJU Foundation Visit

We got a really awesome call from this foundation asking if they could come by and bring Liam some gifts. Come to find out the foundation was founded by a boy with brain cancer and has since passed away but asked for his parents to continue to spread his message of love and support. They brought over $500 of stuff for Liam. All wrapped and ready to be opened. Although Liam was interested in all the toys he really wasn't in opening them but Emy was happy to help. 

Look at this spoiled cute little guy.

It has been so humbling to see people, who don't even know us, come and do whatever they can to shed some sunshine on a crappy situation.

Liam's Fight with Cancer-Time for a 2nd Opinion

Well usually our 21 days between treatments are pretty quiet. But since our 3rd round of chemo things have been anything but quiet. After getting the run around and not really any answers we felt really uneasy after chemo #3. The Dr’s kept telling us they would have to run more and more tests but we were never given a true plan of where we are heading...a specific plan so to speak. I started doing research and reaching out to other moms with kids with Neuroblastoma. What I found made me more unsettled than I already was. I talked to Matt about how I felt like we may need to get a second opinion. Shortly after Liam was diagnosed a fellow cancer mom suggested getting a second opinion but we were still so stuck in the fog of diagnosis and were trusting that Primary Children’s had the experience we didn’t to help get our little guy better we proceeded forward. After being let down several times and Liam not getting optimal care we decided it was time for a second opinion. Originally my thought was to wait until we finished chemo #4 and had new scans then we would look for another opinion but the thought just kept coming that we needed to seek a 2nd opinion. So Sunday night I submitted a request for a consultation to Memorial Sloan Kettering hospital in New York. They are a cancer hospital and actually have a neuroblastoma team. In the research I have found they see about 300 kids a year with neuroblastoma where as Primary’s see 3 roughly. Along with several other things we decided to move forward immediately hoping we would hear back sooner than later. I

I never imagined that Monday morning just shortly after 8am I would receive a call from Maria, the neuroblastoma coordinator). I was kinda in shock as she ran through a list of questions about Liam and his medical history. She let me know that she would pass the information on to one of the five neuroblastoma oncologists and that they would call me back….personally. You guys I didn’t even know how to respond. Maria also asked that I let Primary’s know we were seeking an 2nd opinion so they wouldn’t be surprised. After I got off the phone with her I called the nurse coordinator(Rosann) at Primaries and let her know that MSK would be reaching out for Liam’s medical record along with all of his scans. She was nice on the phone and told me she’d let Dr. Verma know to expect a call. Then I called Matt. I was a little freaked out that this ball had started rolling so quickly. Matt called me down by saying, “Isn’t this what we were looking for?” And he was exactly right. I reached out to the cancer mom that had originally suggested a 2nd opinion and asked if she had anyone with experience directly with MSK. She gave me a couple suggestions and was reassuring that I was doing the best thing by being Liam’s advocate. I just didn’t want anyone to be offended but have lost some faith in his current medical providers. I was able to contact Jen, a neuroblastoma mom, she was a God sent and so helpful.

Tuesday morning I received a call from Dr Basu at MSK. She apologized that she hadn’t called the afternoon before. I guess there was a transcription error with my phone number. She let me know that she had reached out to our attending at Primary’s but hadn’t heard back. She asked a few clarification questions about Liam but her first question was the one that really hit me. She asked, “When surgery was discussed why had they decided against it?” I told her that from the beginning we had been told that surgery was off the table. Initially they wanted to make sure they got any cancer “spores” that weren’t picked up on scans and secondly that with the position of the tumor so large and in between the bladder and rectum as well as rested against his spine they wouldn't suggest surgery. Since then we have asked about what treatment looked like and they always said surgery wasn’t necessary that chemo would take care of it. She said she was surprised because under 18 months of age, with no metastasis, and Liam’s other biopsy results. Surgery for the primary tumor is the first line of treatment and only if margins are still positive for cancer would they do chemo. I was in shock..did I hear that right?! Our little guy may not have even needed the 3 rounds of chemo he received? I asked and she said it was hard to tell at this point but that now that the tumor was smaller it would be much easier to remove. Honestly there was no reason to focus on this. It wouldn’t do Liam any good the only path now was to look forward. She said she would call the nurse coordinator personally and request his scans so we could get things going before he was schedule for any more(possibly unnecessary) chem. About 90 minutes later I received a call from Dr. Basu again letting me know that the scans were on their way to them and would arrive Thursday morning. I wasn’t sure if I should laugh or cry. I felt hope for the first time on this journey! I was gitty. We have been searching for answers for someone who truly seems to care about our child. Our current attending has never even put her hands on Liam to assess him! And I felt so validated for questioning and wondering if we were doing what was best. She said they had seen the radiology report with the 61% shrinkage and how phenomenal that was. She said...word for word the safest course would be to take the cancer out before it did something crazy.

I then called Jen (neuroblastoma mom friend) to tell her the great news. She is so awesome and said she would send me all the contacts I would need to get flights, line up a place to stay, and things to do while we’re there. It’s so nice to have someone that truly understands the fight we’re in. She reassured me that everything was going to be ok and that we would figure it all out. I'm so grateful for everyone's encouraging and loving words and support. They keep us going

This hospital has their crap together. They are so organized and their communication is amazing thus far. Two things we have struggled with at Primary’s. The way MSK operates all 5 neuroblastoma oncologists meet weekly along with the neuroblastoma surgical team to discuss the patients. They collectively have to agree on the treatment of the child and then they proceed forward. They meet officially on Tuesday so we should have an answer officially by Tuesday if not sooner. Dr Basu mentioned surgery before the end of the month! I am overcome with the Lord’s love and direction for each of his children. He is aware of Liam and his struggles. We will figure this out. Right now going to New York feels so right. We are trying to take the time and space to think through all of this. Just like chemo surgery has its pros and cons. Please continue to keep us in your prayers. We may need them now more than ever as we make these huge decisions for Liam and our family.