Liam's Fight with Cancer-Establishing A New "Normal"

Coming home from New York and now knowing we are in a watch and wait phase with Liam's cancer comes with lots of emotions but mostly disbelief and the feeling of what do we do now? I guess we attempt to establish a new normal? Hallie has been asking for more one on one time with Matt and I so we decided now was as good of time as ever to start. I have been wanting to go to the exercise classes at the library for some time and so that what we did. Neither of us had ever been to a Zumba class and Hallie felt a little silly but we had a good time and it was so fun to do something "normal." It is something I think we will continue to do more frequently. I really enjoyed getting to have some one on one time with Hallie. She's getting to an age where she is more of an equal than a child in a few ways. The conversation is definitely more in depth and she asks more grown up questions.

When we got back from New York Liam was so excited to see and play with his sisters and his toys. It was so cute. I think we're all pretty happy to be back together.

Emy really wants to be helpful so I let her help as much as possible. She asked Liam if she could help put his shoes on and he went and sat down so she could help. I love seeing the kids get a long and helping each other.

Laundry basket rides have been a favorite of all of my kids. Liam is no exception. Watching his face light up as she pushed him around was a dream that kept us going those days in the hospital.

The school is celebrating Dr. Seuss's birthday this week by having fun dress up days. Hallie was the only one who wanted to participate in the mustache day and I think I did a pretty good job painting it on there. As we have gone throughout this week it is strange to think we are supposed to still be in New York with Liam recovering from surgery. Im grateful for so many things but a little one is that Im home to be able to participate in the fun dress up days like this with the girls.

I also feel more energy and desire to do things I don't think I had mental shelf space for while Liam was in active treatment. The girls and I have been trying new hair styles. This is Emmy...look how long her hair is getting.

I have learned through this cancer process that it really is the little things in life that make us happy and life worth living. Im so grateful to be home and spending time with all our kiddos.

Liam's Fight with Cancer-Returning to Utah & Fundraiser

Morning Liam’s Army! I wanted to give everyone a little update about what has been happening since we returned from New York. It is so nice to be home and back together. Small things that we once took for granted are much more appreciated these days. Putting Liam in the tub and allowing him to play and splash without worry of keeping his line dry is just one example. We are also very much enjoying the sunshine and being able to get outside without taking Liam out in crowds.

We arrived home late Wednesday night. Liam did great on the flight, once again, sleeping for about 3 hours of the flight from Chicago. It was nice to have a short layover in both directions so he could get out and run around and we could grab some food. We were very happy to be home, see the girls, and sleep in our own beds. Thursday the local elementary school hosted a fundraiser for Liam and a 5th grader that recently has been battling cancer. It was so fun to see several family and friends. I cried on more than one occasion. It was overwhelming to feel the love and support in that room. So thank you to any and all of you that have helped along the way. We left Liam, Gracie, and Em home with a babysitter so it was also nice to enjoy a quiet meal...it’s been awhile. 

While Liam has acted what we felt like was “normal” during his treatments we have seen a whole new side of him since returning from New York. He is so much more full of life. He loves to be chased, tickled, and played with. He has started climbing on everything but also loves still loves to be held and cuddled. There is definitely more laughter here and a feeling of contentment. I really think he is just enjoying getting to be a “normal” little boy without restrictions of active treatment life.

Many have asked where do we go from here? Well that is a really good question. We are starting to get some answers. We have appointments next week(Tuesday and Wednesday) to start the after active treatment process. On Tuesday we will be doing labs, a urine sample, and contrast injection. Then on Wednesday we will have our actual scan(MIBG-glow in the dark test) and meet with our new attending Dr. Fluchel at Primary Children’s(we asked to be reassigned). So on a tangent I'm going to attempt to explain the MIBG(I'm no expert). Liam will be given contrast roughly 24 hours before he has the scan. That contrast will be absorbed by any of the neuroblastoma cells and show us where his active cancer is. When Liam originally had his first MIBG we were hoping for only a glowing avocado and thankfully that is what we found. This go around we are hoping for no glowing….no active cancer. So if you want something specific to pray for no glowing would be a great choice. We are also curious to see where his immune system is at as far as recovering. We have been told it can take several months for his immune system to rebound from treatment. We are doing our best to keep this little guy healthy and your prayers for that would be much appreciated as well.

The war is definitely not over but we have been winning the battles. Please continue to keep Liam and us in your prayers. I will post an update next week after our appointments.

Liam's Fight with Cancer-Day 2 NYC-Meeting the Drs. & Preop

This morning we were both awake before our alarms went off. I had gotten up at midnight to feed Liam and then woke him up to feed him again at 5 knowing that after 5:30 am he couldn’t eat again because of his CT scan. And although we were both exhausted we couldn’t sleep anymore. It was time to get this show on the road. We let Liam sleep as long as we could and put him in the stroller pjs and all and headed for the hospital.

We arrived just after 8 am and got checked in. Shortly after we were taken back to the procedure room where they drew a bunch of labs and checked his Picc line. Then we met with the surgical nurse practitioner who explained several things that we should expect with surgery. I have a love/hate relationship with people who explain things straight forward and like it is. She did just that. She explained that after surgery Liam would be swollen and probably not look much like himself. She explained he would likely receive blood products, have extra IV lines put in, have several drains at the surgical site, and that surgery would be about 8 hours. It wouldn’t have mattered how prepared we were for this it was a blow to the confidence and peace I had going into this day.

The CT/anesthesia was running late so we were able to get his scan done by 12:30pm. They said it would be about 30 minutes and to wait upstairs in the waiting room. As we returned to the waiting area my mind went to the worst possible cases when the 30 minutes came and went and we still had heard nothing. I went back and asked the nurse if she had heard anything. She was nice and called back and of course he was there just sleeping off his sedation. I totally broke down into tears. All of the anxiety and anticipation for the day was catching up to me. Shortly after they called to have us come because he was waking up. As we got to the recovery bay there he was sitting at the nurses desk playing with their phone. Happy as can be.

After we left recovery we were admitted for bowel prep in anticipation of surgery. Dr. Basu and Dr. Gerstle came to talk to us about the CT results, labs, and what to expect. Again they were very honest and up front. On the CT scan it once again showed that the tumor was shrinking. After going over the surgery in detail and answering all our questions they left. Now we had to get Liam to drink 18 oz of miralax mixed with apple juice….no small task. As Matt and I sat there we felt discouraged and unsure about our night and the next day. At this point I had been so emotional that I couldn’t even send our families an update without breaking into tears. Matt and I decided I would go back to the Ronald. I needed to shower, pack our suitcase for the night, get some dinner, and really just clear my head. As I walked back in the rain the tears continued and I just let them. Trying to process what I was feeling.

I hadn’t been back long when my phone rang, it was Matt. He said we had some visitors. I was confused then he continued to say the Dr. Basu, Dr. Gerstle, and Julie(the surgical NP) wanted to discuss Liam’s surgery for the next morning. After we had spoken the last time they had gotten together(impromptu meeting). From this meeting they had decided that because Liam’s tumor had shrunk another 29% now totally 90% shrinkage in 3 rounds of chemo they were now thinking that a watch and see approach was better than the risks involved with doing surgery. They went on to explain several things and they all made sense but at the same time it seemed so surreal. The surgeon said several times that this rarely happens but that they are happy when it does. They talked to us about the statistics and how there was only a 10% chance it would come back. They teased about coming to New York for only a CT scan and labs. Matt asked them what they would do if it were one of their children and they said together that they would both watch and wait. Dr. Basu apologized for having us come all this way for just some tests but it was what they felt like was in Liam’s best interest. How can you fault a Dr. for that? I don’t think you can. Dr. Basu said something that really stuck with me. She said that she knew we had come to them for an honest 2nd opinion and they wanted to maintain that trust with honest and open communication. They said they would give us some time to talk it over and to have the nurse call when we had made a decision. On my way back to the hospital I had a million thoughts...why had we come to NY? Were we making the right decision? Could this really be over? What would be best for Liam? Is this why I had been such a mess today?

Once I got to the hospital Matt and I prayed together and without even discussing it knew what we needed to do. Matt said I think all those people that fasted with us may have been part of an amazing miracle. We let the nurse know we agreed with the Dr’s recommendations and would get ready to go home. A few minutes later they took out Liam’s Picc line and just like that no more IV lines.

Once we got back to the Ronald we let Liam eat to his hearts content. He had chicken noodle soup, blueberries, and strawberries. I'm not sure what he enjoyed more that or getting to bathe without having some piece of tape and plastic on him for the first time in months. Its the simple things that really make life so great.

And although there are no guarantees the plan is now to watch and wait. They will watch him closely for the next several months and make sure the tumor doesn’t start to regrow. Then we’ll be able to go longer between scans. But won't officially be clear for at least 2 years. We are hoping that when we return to Utah we will be able to switch attendings and work with one that has proven to be willing to work with MSK in a joint effort for Liam’s best interests. I do understand we aren’t necessarily in the clear. I'm hopeful that this is the beginning of the end for this cancer journey. And just as quickly as the decision came to come to NY we are making the decision to go home. We miss our girls and can’t wait to be together as our family of six again.

 

Liam's Cancer Fight-Day 1 NYC- Sightseeing

Monday I could definitely feel then anxiousness in me building. Before we left to come to New York I had a “dream” of sorts. A couple weeks ago a friend invited me to come to the adult session of stake conference. She was speaking and said every time she sat down to work on her talk she thought about me. I wasn’t sure if I should be terrified or flattered but I decided I was going to make sure I went to the meeting. The night came and Matt stayed home with the kids so I could go. As I walked into the chapel I felt a familiar peace like I was home. As the meeting started the stake president welcomed everyone and said he felt like there were several there that night looking for peace and comfort. I immediately had the overwhelming feeling of God’s awareness of us in our daily lives and in Liam’s fight with cancer. I felt like God was so proud of me both as a daughter of God and as a mother to his sweet spirits. As I sobbed quietly in the seats I realized I hadn’t even gotten through the first talk and already felt so filled with gratitude for this meeting. As my friend stood up to speak she talked about her trial having cancer as a young mom. She talked about how she had envisioned him having a conversation with Christ before coming to this Earth and he explained all that would be expected of her. She said they both laughed and cried as they went through her life. I felt like I could relate to so many things she was saying. As I left the meeting later that night I felt so touched and grateful that my friend had followed that prompting and invited me to come to a meeting I probably otherwise wouldn’t have attended.
Later in the week I had a similar experience. Some days I really worry about Liam and other days I feel so overwhelmed with peace. On this particular day I was worried about our upcoming New York trip. As I stood there doing dishes I saw Christ in this “daydream,” he and I were talking. As the conversation went on we talked about how I was chosen to be Liam’s mom and how he would have to endure this trial and it would be my job as his mom to protect and take care of him. But in the end we would be able to see him regain his full strength and grow up. I couldn’t hold back the tears. It was one of those tender mercy moments that has carried me through days like Monday.
With that in mind Matt and I both decided we needed to get out of our room and do something to keep our mind occupied. We found a local tour group with an open air bus(to avoid germs for Liam)that would take us around the city. It allowed us to hop on and off as we wanted. Off we went to Central park where we would catch the bus. The weather was perfect and you could even see some of the plants just starting to come out of the ground. We got to see several of your usual New York sites but I think my favorite was the 9-11 memorial. It was beautiful and there’s a peace there like I have experienced anywhere else in the city. But what really made it fun was watching Liam with his head off the side of the bus, like a puppy out a car window, letting the wind blow through his hair. He would wave at anyone that would look his way. He was just taking it all in. I’m sure it’s been hard for him to be cooped up in our condo too. As we got to the Statue of Liberty the hospital called to give us our appointment times for Tuesday morning. We needed to be there at 8 am for lab draws and to meet the surgical nurse practitioners, then the anesthesiologist at 9 am, drink contrast for his CT by 9:30, and then meet with Dr. Gerstle (surgeon) and Dr. Basu (oncologist) sometime in between.

 

 

 

   

 

We got back to the Ronald for dinner and then got ready for bed knowing it was going to be an early morning. I was grateful we had gotten out and that we were one day closer to why we were here. I'm also grateful for the several sweet tender mercies that have kept me going during this trial.

6462 Summit Cove-Getting Out & House Planning

We were in serious need of getting out of the house and doing something and we also need to start making some decisions for the house. We called Lighting Design in Layton to see if they were busy and no one was there but the sales people so we loaded up and headed to pick out some lights. We decided after New York to forward face Liam's carseat. He was getting more and more frustrated when he couldn't see the movie that he could hear. Now he looks so grown up.

For some reason the choices seem harder to make this time here are some of the lights we like..for now at least

After looking at lighting everyone was hungry so we grabbed some Wendy's and decided to head to Floor and Decor to look for flooring. It was a little less successful than the lighting store. Liam was getting frustrated wearing his mask and all the girls wanted to ride int he cart while Liam wanted to run all over. These are the days a babysitter would have been a much better idea. But we found a couple things we like and we'll go back another day...probably without the kids.