Looking Healthy!

It has literally been 3 months since I have given you an update on Nick. We have been trying to live life, and boy is it a busy one at times. Nick still has monthly clinic appointments, occasional eye appointments and then we go in for issues or fevers as well. We have been at clinic a little more than we would care for but it is still loads better than being there multiple times a week. He also has appointments for foot zoning, physical therapy and weekly Home Health to re access his port.

In August we went on a family trip to Hawaii (the big Island)!! It was a much needed get away and good quality time together as family. My mom and dad went with us and get credit for getting us our condos. They were very roomy and our Lanai was amazing. Nick was able to not be accessed for the entire 11 days we were gone and enjoyed his time in the ocean as well as his longer, more relaxing showers. We spent some time at beaches, went to a seahorse farm, octopus farm and bee farm. We also enjoyed a beautiful botanical garden. Nick really pushed himself to do a lot there. He was having some pretty severe leg pain and refused to let it slow him down.

Nick and Kate with Henna Tattoos.. Nicks stands for Survivor!

Love these kids!

Luau Fun!!

We got home from Hawaii the Sunday morning before school started. That was a little rough but worked out ok. Kate started 6th grade and Alex is a senior. Where does the time go. We had found out the week before we left for Hawaii that Granite School District doesn't offer and online program for 7th or 8th graders, meaning Nick could either do Home Hospital School again this year or we could find another option. We found Nick an online school and he got started about a week later than the other 2 kids. He is taking a full schedule and doing very well. We are very grateful for that.

September was another full and busy month as the kids got back into the school routine. Nick turned 14 on the 9th and picked out a puppy from a rescue. He is a lab/ cattle dog mix and Nick named him Bandit. It was a little crazy at first but he is a smart dog and making lots of progress. Super cute as well. We totally need a little more crazy in our life!!

Bandit! He has grown about 3x this big so far!

Nick also had his Make-A-Wish wish declared granted in September. With the help of REAL Salt Lake we had the opportunity to take a tour of the REAL Salt Lake Stadium with Nick's soccer team. We got to go in the locker room, the room they hang out in and watch video of other teams etc, as well as some other behind the scenes parts of the building. We met Nick Rimando and Justin Glad, Nick got pictures with both as well. The following Saturday we were able to go to the game early and they read Nick his wish grant proclamation. His wish is to go to Hawaii (Oahu). We hope to go next spring or summer.

The first weekend of October we had another family wedding. It was great to see how healthy Nick is looking. It was a night and day difference compared to the wedding we attended last May. We had family staying with us and it was a fun weekend.

My Handsome Men!

In October Nick was invited to speak at a wonderful company that has provided some amazing stockings for the Oncology children that are inpatient during Christmas. He was asked to speak about his cancer journey and he did an amazing job. He wrote his talk and gave it confidently and with a perfect amount of Nick charm/humor! He was glad to be able to help encourage this company to keep supporting this cause and feel like he was giving back to the sweet kids enduring this horrible disease.

Nick is continuing to look healthier and we are so grateful for that. His hair is growing in. He is filling out and not looking so thin. He has been able to focus on his school work and is doing very good in all his classes. It is really fantastic to see. His biggest struggle right now is his legs.

Due to the continued leg pain he has been having his doctors scheduled him for an MRI last week. They wanted to check for something called AVN- Avascular Necrosis. It is death of bone tissue due to lack of blood supply and is considered chronic. The MRI verified it is not AVN but there is definitely something there. It appears to be inflammation in the bones which could be caused by a bacterial Infection or something else. Our doctors think it could either be the Fungal Infection he already has, now presenting in the bone (or may have always been there) or another condition called CRMO- Chronic Recurrent Multifocal Osteomyelitis, an auto inflammatory disorder that mostly affects children. The consensus from the doctors is to biopsy the bone in either his knee or ankle showing the inflammation and test it. That is scheduled for Thursday. We are hopeful it will provide some answers and help treat it so Nick can have less pain in his legs.

All in all we are grateful to have Nick in Maintenance. We are enjoying having him be more talkative, funny and more like himself. He is fairly frustrated by the leg issues as he has always been an active kid. He really can't do a lot of the things he LOVES, and that is hard. We pray there will be some answers to his leg pain and hopefully some relief but if not we will continue to be grateful to have him where he is, doing well in those other areas. Eating, gaining weight, HAPPY!! Loves to all of you that keep Nick in your prayers, please keep praying his legs will start to do better.

Hooray for Maintenance!

Nick completed the last of his intense chemo treatments on Monday, June 5th. He had a dose of Vincristine and Methotrexate through his port. We went back the following day for a blood transfusion due to low red blood cell count and were looking forward to his two week break before starting the Maintenance Phase. He was doing quite well and was enjoying his break until June 13th when he took a bad fall in our kitchen on the hardwood floor, it was so scary as he almost hit his head on the corner of base of our island... he landed fairly hard on his wrist and hip. On June 14th we headed up to Primary's for a wrist X-ray and were relieved to find out it wasn't broken. He ended up just being really sore for the remainder of that week.

Monday, June 19th Nick started Maintenance! The day consisted of one chemo in clinic - Vincristine, and then a Lumbar Puncture with intrathecal Methotrexate in his spinal fluid. Maintenance will consist of once monthly doctor visits, along with the IV chemo Vincristine and sometimes a Lumbar Puncture. It also consists of oral doses of a chemo called 6MP daily, oral Methotrexate weekly, and a five day pulse of a dose of steroids. This will be Nick's general treatment protocol for the next 2 and 1/2 years until Dec. 19,2019 - his end of treatment date.

Overall we have to say "YES! Maintenance is better!". It is so wonderful not going up to clinic multiple times a week, we miss the nurses in clinic that have become a part of our lives but we welcome having some normalcy returning. Nick is really enjoying not being nauseous nearly all the time and has been working hard to eat better and gain some strength back. The first few weeks of maintenance this was still a real struggle. His digestion was off and his legs were still having some pain due to the neuropathy.

We are working on trying to live - really spend more time together and doing memorable things. We went to the Utah Museum of Natural History and the Living Planet Aquarium. We had a nice trip to Heber over the 4th of July and spent some time fishing on a rented Pontoon Boat on Strawberry Reservoir.

A couple of Nick's friends have done some special things for him. His friend Caleb held a blood drive in Honor of Nick for his Eagle Scout project. Nick and I helped for a couple of hours and it was humbling to see all our neighbors and friends that came out in support of Nick and Caleb.

Nick's friend Mary planned a little party for Nick and it was fun to surprise him. Many of his friends he hasn't seen much came and Nick had a fantastic time- he was truly happy and himself. Thank you to Mary for planning it and thank you to all his dear friends that were able to make it. Love you all! Did my mama heart good to see him doing something that made him so happy!!

The second week of July started out a bit rocky with Alex's car needing repair and Kate breaking her pinkie at gymnastics. Bryan and I were heading out of town on Tuesday for a little R & R and I wasn't sure it was meant to be. Lucky our luck changed and we had a wonderful time for 3 days in Vegas with some wonderful friends!!  We even go upgraded to a suite. It was amazing. Thanks Emily, Dennis, Michele and Pat for a fun and relaxing get away. So grateful for the fabulous company! I literally got home from Vegas hours before leaving with Kate for Phoenix. We went to Phoenix for a baby shower and some time with Bryan's side of the family. We had a wonderful time.

Bryan and the boys went to the REAL vs. Manchester United Game on Monday, July 17th and had a great time. Alex was in heaven as he literally LOVES Manchester United!! He got the coaches signature on his Man U jersey and it made his year!

Thursday, July 20th Nick had clinic with his monthly chemo and a Lumbar Puncture. We arrived home around 2 and he was complaining about having the chills. He had a low grade fever that quickly escalated to over 103 so after a quick call to clinic we headed back up to Primary's. In clinic they started him on antibiotics and some fluids (as he had fasted for his procedure and thus was low on fluids). They decided to admit him overnight for observation with the hope we could leave first thing in the morning. On Friday, July 21st he was discharged about 5 pm. They had to adjust his Lovenox level (blood thinning shots) and retest 4 hours later to verify they were in a therapeutic range. Before leaving, one of Nick's doctors- Dr. Ours- came in to let us know the fungal marker from the day before had come back and had escalated back up above the 500 mark. Frustrating to say the lease, they scheduled a CT scan for Tuesday the 25th.

I am relieved to say we found out from the scan that his fungus infection in his spleen is improving. The fungal marker is not always the most accurate way to measure it, so we are very relieved to hear that we are heading in the right direction.

All in all I have to say things are definitely improving. Nick is getting stronger, has gained some weight and his hair is growing in. He seems happier and more like himself, getting more comfortable and doing more. I am grateful he is seeming more like himself. He still misses stuff, mostly soccer. He has told me numerous times he wants to feel good enough to go out and kick the soccer ball around or run around the neighborhood with his friends. He will get there, but I keep reminding him it will take time. We are so grateful for the love and support of so many friends and family, so grateful that he is in remission and improving daily.

Wedding Fun and the End of Erwinia!!!

Nick with the Bride and Groom

Saturday, May 13th our niece got married and we had a great day celebrating. A beautiful sealing at the temple with a family dinner and then reception. All Bryan's family from Arizona and California were in town, we had a really great weekend. We removed Nick's feeding tube that morning and he has been doing fairly well trying to eat on his own. Some days are better than other days depending how he is feeling!

Love these sweet kids!

Alex, Nick, and Kate looked fabulous! We had a very nice day, it was nice to feel kind of normal for a day! Kate and Bryan danced the father/daughter dance and handsome Alex danced with me for the mother/son dance! We all had fun doing the photo booth! It was fun visiting with family and guests as well!

It was very nice to have a lot of family in town. Nick has especially enjoyed when family has been in town to visit. It's a nice distraction and change to his everyday life right now. Plus he gets sick of hanging with mom. Can you believe that!?







We had Bryan's nephew Dustin (who lived with us when Nick was little) and niece Danielle staying at our house with their spouses. Danylle also has two little boys - Barrett and Briggs. It was fun having little kids around. They are so cute! Barrett adores Nick and it was fun to see the two interacting! Nick was worried Barrett would be afraid of him because of how he looks but didn't phase the sweet kid. That meant a lot to Nick! Thank you Danylle for preparing him!

Nit and Bear! (their nicknames)

Sunday, May 14th was Mothers Day and it was a nice day. My cute family spoiled me and I got he kindest card from my kids. Melted my heart the nice things they wrote! Nick was pretty worn out from the day before and rested most the day. We had all my family and Bryan's family over for a BBQ that night and enjoyed everyones company! Nick also got to have the Home Health nurse access his port and do a CBC to check counts for the next days chemo!

I am so grateful to be a mother and I can't imagine my life without my kids. Its been a hard 9 months but I wouldn't trade it for anything. My kids bring me so much joy! I am so blessed to have them!

Monday, May 15th was clinic day. Nick met counts for his 3rd dose of Methotrexate and Vincristine for this phase of treatment. He also had visits on Wednesday and Friday of that week his last round of Erwinia shots. On Saturday the 20th we were able to get over to Bennion Jr. High for his soccer teams last game of the season. We were so grateful Nick felt good enough to go and it worked out. He really seemed happy there and enjoyed seeing all his friends. I can see how much he is missing soccer. It was a good day.

Razzia Rage- Team Cheer!

Razzia Rage 2016-2017 Season

Monday, May 22nd and Wednesday May 24th Nick went to clinic for Erwinia shots again. On Thursday the 25th he had a Lumbar Puncture and his 4th dose of Methotrexate and Vincristine. Then on Friday the 26th and Sunday the 28th Nick had his last 2 visits for Erwinia.  Five trips to Primary Children's in 7 days. Wow! On Sunday we actually checked into inpatient for the shots- we were there an hour or two but so glad to have them over with. YAY! NO MORE ERWINIA!! Per my calculations Nick has done 10 weeks of Erwinia, at 3 visits a week, 2 shots each time for a total of 60 shots in his thighs.. Not fun... so happy to have those behind us. Between those and his twice a day blood thinning shots this kid has had around 500 shots over the last 9 months.WOW! Told you he was brave!!

We also had a heartwarming experience on Friday after clinic. Nick wanted Su Casa for lunch so we drove to the location on 3rd south. Upon finishing our meal our waitress came over and said someone had paid our bill. It was deeply touching. SO many good, kind people in the world!!

We are trying to get photos with some of the nurses Nick has had the pleasure of getting to know. These are nurses we have had often inpatient and also some that have made a special connection with him. We are blessed to live so close to an outstanding children's hospital and we can not say enough about the nurses that have treated him both inpatient and in clinic. Below is a handful of our favorites from inpatient. We are missing a couple but hopefully we will catch them when we visit again.

Nurse Rachel and Nurse Andrea

Nurse Kate

Nurse Whitney

Nurse Kira

Nurse Christina

Nick has had this week off. It has been a bit of a rough week. Lots of digestive issues due to the Methotrexate and Vincristine. Hope he feels better soon and can enjoy his week. He really wants to feel good enough to do something. That has been the hardest on him, not feeling well most of the time and not being able to do more. Again, thank you for all your love and support. We are eternally grateful!

Chemo Shortage and Fly Fishing Fun!

Friday, April 28th was a trip to clinic for Nick's Erwinia shots. We have been fortunate enough to befriend another cancer family through a mutual friend. Their 12 yr. old daughter was diagnosed will ALL in January. That day she was got Erwinia shots about 10 minutes before Nick got his and we all enjoyed our hour wait time visiting. The time has never passed so quickly! Bryan had to leave early for a work appointment and this sweet family offered to help me get Nick out to the car afterwards. The daughter and her dad sat with Nick while us two moms walked out to the parking garage and pulled the cars around. It's been hard to get to know other patients and families up there, mainly because we are all on different crazy schedules. It has been very nice to get to know a family that we can both share experiences back and forth and provide some support. I have really felt blessed by them.

Later that afternoon I received a call from Nick's Oncology Care Coordinator- Chelsea. We love Chelsea, she is so helpful and nice. She graciously puts up will all my calls and emails, gives us our treatment calendars and explains every treatment phase. Chelsea called that afternoon to explain that due to a national shortage of Erwinia they would not have it available for Nick's Monday scheduled Erwinia. He had received 2 doses of the 6 he needed and at that point it was unclear if he would be able to receive his last four doses.

Monday, May 1st instead of going to clinic I took Nick out for a walk in his wheelchair and we went to the library! It was a very nice day! Tuesday, May 2nd we received another call from Chelsea saying they had managed to get some additional doses of Erwinia from another hospital and could possibly restart his shots on Wednesday. There was not enough to do all four shots that Nick would need to finish the full dosage. There were 2 other patients that needed the Erwinia as well and they were waiting to hear back what the doctors decided to do on them and then for the Pharmacy to hear back about obtaining more doses from the pharmacy company that produces it. She said they would call us as early as they knew anything on the additional doses on Wednesday. We found out that basically one company makes this chemo, it is for a very small percentage of the cancer population as it is only used to treat Leukemia and only for patients that are allergic to Pegaspargase chemotherapy! Wednesday was a wait and see day, we stayed home so we could head up for the Erwinia as soon as possible. He had another chemo scheduled on Thursday that must be administered 24 hours apart from the Erwinia. About 2:00, I received a call saying yes they were able to confirm they would have the additional doses and thus he could come up for the dose they had from the other hospital. We got to clinic just about 3:00 and he had his Erwinia shots. Home health had come that morning for labs and his CBC came back while we were in clinic. His counts were high enough for his count dependent chemo the next day but his red blood cells were quite low. It was determined they would do a type and cross for the blood match and he would get blood when we came back the next day.

Thursday, May 4th we got to clinic at 10:30. He got an infusion of 2 bags of blood. (Thank you to all of you out there that donate blood or platelets- love you all!) By around 3:30 he got his scheduled chemo of Methotrexate. They ended up holding his Vincristine and starting him on a medication for the nerve pain he was starting to experience. The Vincristine is the chemotherapy that affects the nerves at the end of his fingers and toes, to this point he has only had issues with his feet and toes. They had been numb for a while but that had been improving, he can now move them well but has nerve pain instead. We also saw our doctors that day and got some disappointing news that one fungus sample from the biopsy had been lost/ misplaced by the lab and never got sent to the University that was going to be running the DNA testing on it. The sample they have still has failed to grow any fungus for meds to be tested on either. They can see the fungal cells under a microscope and identified them as Candidiasis which was their guess from the beginning. Our hope is the samples will grow something so we can find the most effective way to treat it. Fingers crossed!

Clinic infusion room- Nick getting blood.

Friday, May 5th was a crazy busy day! I got a much needed mom/caregiver break, a nice morning at the spa for a massage and pedicure and sushi lunch with two of my dear friends! Bryan stayed home with Nick and I met them up at clinic about 2:30-3:00 for Erwinia shots. Bryan left right after the shots to go to Kate's gymnastic meet while Nick and I hung out for the required hour. We had a nice long visit with Nick's doctor- Dr. Barnette. Nick was full of stories that day and we had some good laughs. We went to leave and were practically out the door when Nick decided he wanted to go back up to the fourth floor and visit the inpatient nurses. Two that Nick really loved were there- Kate and Kiara. It was great seeing them both again.

Saturday, May 6th was a great family day! Our family along with some other Primary Children Cancer patients had been invited by Tacky Fly Fishing for a fun day of fly fishing and other activities. It was at a beautiful place called Falcons Ledge in Altamont near Duchesne. They have around 8 ponds on their property. Not only was it beautiful and so nice to be outside the entire day, we all had a fantastic time. We all learned how to fly fish and everyone caught a fish or two. They had 2 fly fishing guides per family and they really did all the work. Ours were Tim and Shaun and they were awesome. They were wonderful instructors and were wonderful with the kids. We got there around 10:30 and left about 4:30. Nick unfortunately sprained his ankle toward the end of the day but he still stuck it out for a couple more hours because he was having such a great time. It was a full day and Nick was exhausted on Sunday but he said it was worth it. It was by far one of the best days we have had since Nick was diagnosed in September. Huge thank you to Tacky Fly Fishing and their sponsors for putting on such a fantastic event!! We all want to go again it was so great!

Kate holding Nick's Fish!

Great day together enjoying the outdoors!

This week Nick finished up his last 2 doses of the Erwinia shots for this round, so we were in clinic on Monday and Wednesday. He also had an X-ray of his ankle to make sure it wasn't broken or fractured. We are grateful it is just a sprain! He only has one more round of Erwinia, which is 6 days of shots left!! Yay!! We are so excited for that. He had a fever on Monday morning but not one we have caught since. We pray the fevers stay away and the fungal samples grow something.

Nick is starting to have more good days. He is still tired and doesn't get up and around great, but his spirits have been better. I think he can finally see the light at the end of the tunnel. School is almost over too, which will be good. One less thing for him to worry about.

Thanks to everyone again for the meals, treats, sweet cards, texts, etc. We are grateful for every gesture of kindness, compassion, and charity. You have helped ease our burden. Loves to you all!

Our Superhero

My last blog left off with Nick going in for his spleen biopsy (last Thursday), so I will pick up there. Bryan and I were feeling pretty good about the procedure and as the morning progressed quickly got very stressed about it. It started when we were in the pre-procedure room and the Nurse said she had worked there 15 years and never seen a spleen biopsy. Not exactly good to hear. Once the nurse and anesthesiologist had been in to see us, we walked back to the procedure room. Once back there we met the Interventional Radiologist that would be doing the procedure. He reviewed with us what they saw on the CT scan and the plan for getting the biopsy as well as some risks involved. The hardest thing about a lot of this is that Nick is right there, and understands most of it. Nick started to get upset and one of the procedure nurses suggested he take Nick out for a walk, so I went with them to help calm Nick down. The nurses name was Adam, he was awesome with Nick and I was so appreciative for it. While we were walking they had a great discussion about drawing, something they both enjoy and it was a great distraction for Nick's worries. By the time we got back in the room they were ready to go. Bryan and I walked out of there not feeling as confident as we had in the morning.

The CPC waiting room is always quite crowded and loud, so we opted to walk down to some benches near the elevators to wait. We had been told probably 45 minutes to 1  1/2 hours by the Radiologist. About 20 minutes later we see Adam done the hall... we looked at each other and said "ok, think this is either good new or bad". Adam let us know that the biopsy had gone very well, they had gotten a sample and Nick would be going back to recovery.  We were very relieved to get the good news. We also saw Nick's Oncologist Dr. Barnette a few minutes later and he seemed happy they got the sample. About 15-20 minutes later we were called back to recovery once Nick had woken up. We went from recovery directly to the fourth floor cancer unit (Nick's home away from home). They admitted him overnight to watch for complication from the procedure, primarily bleeding was the biggest concern. He did fever twice that day. That afternoon they got Nick restarted on Micafungin- his IV med that he had been on in conjunction with an oral one the first 4 months of the infection. When the fungal marker originally decreased in late January - early February it was decided to take him of the IV med as the ID (Infectious Disease) doctors had voiced all along we were simply doing unnecessary double coverage. We thought it would help improve his quality of life, not being accessed 24/7. Our hope is with the biopsy they can find another oral med that will effectively treat his fungal infection, the biopsy results could take 2-3 weeks. Thanks to restarting the IV med, he seems to have avoided restarting the fevering he experienced in the fall. So very grateful for that! We are so grateful for all of you that are praying for Nick and our family! If you can pray specifically that he will not fever and that they will be able to identify the fungus and identify an oral medication that will effectively treat it! Thank you!

Nick felt pretty icky from he anesthesia the rest of Thursday and most of Friday. Friday was a very busy day. Nick was released from inpatient shortly after 8 am and by 8:45 we were heading over to the Moran Eye Center for his eye appointment. We were a bit anxious about it but it went great. His eye was still looking good, eyesight the same and Nick doesn't have to go back for another 2 months. By 10:00 we were back at Primary Children's for Nick's Erwinia shots, and I think we were home by around 1. Nick was glad to be home and we were glad to have the week over. Four days up there was more than we care for.

Friday was "Superhero" day at Kate's school. When I picked her up from gymnastics the night before she was super excited to tell me she was wearing her "Nicks Kicks" shirt the next day for SuperHero day. I started tearing up when she told me that. What a sweet girl! She wanted to see if her friends were interested in wearing their shirts, so she texted their moms when we got home and of course her friends were thrilled to. Kate's teacher was sweet enough to get a few pics for me of the girls and I loved the sweet smile I saw on Nick's face when I shared them with him. Those three girls got a smile out of him, and made his week. Alex is an awesome support as well to Nick and wears his shirt pretty much every week to school. Nick is lucky to have two siblings that love him so much and want to help him in any way possible. Nick is our "Superhero". We are so proud of him, he has endured so much. We think he is amazing! He has gone through so much and just keeps going- somedays he doesn't want to do it anymore and we understand, but he does it anyways. I am so proud of all my kids and how amazing they have been. My heart is full!

Love these cute girls!

This past Monday, April 24th, Nick started his last phase of intense chemo, called Interim Maintenance II. He will have 4 weeks of Erwinia shots and 5 doses of Methotrexate and Vincristine over the course of the next about 6-8 weeks. The phase will require us to go up to clinic a lot, up to 4 days a week,  as the Methotrexate can not be given on the same day as Erwinia. Every Methotrexate dose requires that he meet counts, if he misses then we wait four days and see if he can proceed. If he misses again he skips that dose. It should be an interesting phase. Monday was clinic at 8 for CBC, doctors at 8:30, and a nurse administered his Methotrexate and Vincristine chemo. By 9:45 we were down in the CPC for his Lumbar Puncture- the chemo injection in his spine. He doesn't have another one for a month and he is very happy about that. Nick HATES anesthesia, it doesn't agree with the kiddo and it is the saddest thing. I am happy he doesn't have one for a while. He is debating just using numbing cream and a numbing shot for the procedure. We have been told that a lot of teenagers go that route if they hate the anesthesia. Nick is going to think it over and see if he wants to try going that route!

He got his first Erwinia shots today for this phase, another not fun thing that we are anxiously counting down to be done with- NO Erwinia in Maintenance! Yippee! Nick is scheduled to start Maintenance sometime in mid to late June. Once in Maintenance he will only have to go to clinic once a month. He will still receive Chemotherapy - the Vincristine, and he will still have Lumbar Punctures but they will begin to taper off in frequency. Maintenance will end on Dec. 19, 2019. That date is set in stone.

Thank you again for all the kind texts, dinners and prayers. I started off with thank you cards in September but have sadly fallen so far behind it is embarrassing. Please know your kindness and generosity is appreciated immensely! You have all eased our burden! Loves to all!!

The Curse of the Fungal Infection

The week of April 3rd was Nick's second week of the chemo ARAC for 4 days. His blood counts were fairly low and it was pretty certain he would likely need blood by Thursday. So they did an additional blood draw for the type and cross so they could order blood quicker. When they do a blood type and cross for blood products it takes around 2 hours to get the blood than an additional hour or two to infuse into Nick. By doing the type and cross ahead of time it made it possible to get the blood ordered before we get there. We went home and Nick spent most that afternoon and the next day sleeping. Wednesday morning I called up to clinic and asked to bring up Nick for a CBC and blood that day. We arrived at clinic about 10 and spent a good portion of the day there with Nick getting 2 bags of blood. By Friday Nick decided he probably needed to get his feeding tube back in. It had been a rough 2 weeks, he had not eaten much at all and was feeling the effects. I texted our fantastic home health nurse Dylan to please come over and place the tube for us. Dylan came late in the afternoon and put it back in. Nick was amazing. Getting a feeding tube in is not Fun! That day was particularly rough, it took two times to get it over the spot in his nose to snake down to the throat, and then it took 3 more tries of pulling it partially out to get it placed correctly in his stomach.That weekend was a nice break to get over the chemo nausua.

Monday April 10th Nick went to clinic to be accessed, a CBC, meet with docs, and then downstairs for his LP. Once he was awake after his LP it was back up to clinic for Chemo. He started his 2 weeks of Erwinia shots and had a chemo pushed through his port called Vincristine. The Vincristine is a chemo he gets a lot, it is the one that causes the nerve damage in his toes. The good thing about the Vincristine is that it doesn't make him nauseous. The Erwinia shots are 1 shot in each thigh of chemo, he does them 2 weeks in a row, 3 days each week for a total of 12 shots. They are not fun, he says they sting a great deal but he handles them well and they do not make him sick anymore. His legs get pretty sore by the end of the round of shots. This day ended up being extra hard for Nick, he woke up from the anesthesia very sad and it continued the rest of the day. Wednesday April 12th we were back to clinic for shots again, it went really fast that day. Got there at 10, had shots in by 10:20. Waited our hour in clinic to monitor for allergic reaction then home by a little after noon. It was awesome.

Thursday afternoon we got some bad news that Nick's fungal marker had shot back up to over the 500 mark. We got to mull that over all night until we could talk to the doctors in clinic the next day. Friday morning Kate had a gymnastics meet at 8:00 am. My wonderful mom came and sat with Nick while Bryan, my dad and I went to Kate's gym meet. Bryan had to leave just before the last event in order to get Nick to his noon clinic appointment. My dad was kind enough to go with them as I was still with Kate at her meet. I think my dad really enjoyed going to clinic and seeing what that was all about. He had a CBC and his Erwinia shots and Bryan had a chance to talk to one of our doctors regarding the fungal marker. They had spoken with the ID (Infectious Disease) Doctors and it was determined a CT scan should be done. They scheduled him for a CT Monday afternoon after clinic.

Monday, April 17th was our regular clinic visit. Nick has his CBC, met with his doctors and his two chemo's- Vincristine and Erwinia. We then went down to the CPC for his CT scan. You spend the first hour to hour and a half drinking contrast for the scan. In Nick's case I did all the work, putting the contrast in his feeding tube a little at a time. I think he liked that way better. We went back for his scan which takes about 10 minutes and then back up to clinic for results. After a small wait, our doctor came in and said the scan showed the spleen fungal spots had gotten worse. Oddly, the spots in the liver and kidney where almost gone. He went over what he thought might happen, either a biopsy or possible removal of spleen. By Tuesday morning after the ID doctors weighed in along with a radiologist, it was determined a biopsy would be the course of action. We went in Wednesday for Erwinia at clinic and we are back here today Thursday April 20th for the biopsy.

Our hopes and prayers are that the biopsy will go smoothly, with no complications and they will get a sample. We really need a sample so they can test it and see what meds will treat it the most effectively.

Rollercoaster Ride

This journey has been a rollercoaster ride and I am not a fan of rollercoasters - never have been. The last few weeks have consisted of many ups and downs- as is to be expected. I've spent a lot of time contemplating all that I am suppose to be learning from this trial. I can't even fathom what Nick is suppose to be learning- he is 13! I have a broad range of areas I could use some growth/improvement in. Good thing I have 2 and 1/2 more years of this trial to work on them I guess. I am definitely learning patience, to be ok with having little to no control and working harder to work on staying positive. Before this trial I considered myself a fairly positive person- what I have learned with the help of others is that I am not. Bryan is the positive one. I also thought I was a pretty strong person but that is proving otherwise as well. Sorrow has crept in and seems a bit to eager to present itself now a days. My number one area I am working on is how to be strong, Nick needs me to be strong as do my other kids and there really is no allocated time for me not to be. Trials are an interesting thing, one like ours really throws your whole world into a tailspin. It really makes you reflect. The fact you are suppose to learn from your trials is a whole other tailspin, and a bit overwhelming to think we all need that much learning... I hope it will feel a bit less so when the trial is over. Lately it has just made me start to feel like I am failing at everything.

The week of March 13th ended up being a great week. We had family in town for the NCAA Tournament as well as a Bridal Shower. We enjoyed the company very much! It is nice for Nick to have company- its a great distraction! Plus the poor kiddo is so sick of Bryan and I. Many thanks to our family for the visit and I also want to thank the neighbors that have stopped by the last few weeks  as well. Thank you! It means more than you know. Nick was able to attend 2 of the NCAA sessions and see some great College Basketball. He went to the Thursday afternoon session with me and to the Saturday session with Bryan and Alex. We had awesome 16th row seats also. We also went to Top Golf that weekend with Bryan's sister and nephew who were visiting from Phoenix- Nick was even able to swing the clubs a few times! He had a great time and did a lot of walking and eating that week. It was great!

NCAA fun with Nick's cousin Dustin and his wife Susie

Arizona Cheerleaders and Mascot

Family Fun at Top Golf

Nick had the week of March 20th off. No clinic, no chemo! YAY! He loves his breaks because he is starting to feel so much better on them. It is always very hard to go back a week off though. We got out to see the Beauty and the Beast movie, to the Puppy Barn and to the Aquarium. It was a pretty good week off.

We seriously wanted this Border Collie!

Nick started his second half of this phase on Monday March 27th. This half of the phase consists of chemo called ARAC that is administered for 4 consecutive days for 2 weeks in a row with some additional chemo in clinic on Mondays. He then has two weeks of the Erwinia shots which are the shots in both legs 3 times a week for 2 weeks.  started the day at 8:00 am in clinic, doctors visit then downstairs to the Children's Procedure Center for a Lumbar Puncture ( chemo in his spine). He is never a fan of the anesthesia for the LP but he was sitting up and eating when we got called back to recovery about 30 minutes after he went back. We had never seen him look so good after an LP. Thought it was a sign it was going to be a good day. We went back up to clinic for his scheduled Chemo's- He got 3 different kinds that day and then got home about 1:30. This half of the phase consists of chemo called ARAC that is administered for 4 consecutive days for 2 weeks in a row with some additional chemo in clinic on Mondays. He then has two weeks of the Erwinia shots which are the shots in both legs 3 times a week for 2 weeks. He started feeling pretty crummy shortly after getting home and by early evening started a fever. After a quick call to the On Call Oncologist we took Nick up to the ER around 8 pm. This was Nick's 3 visit to the ER since September. They did a chest X-Ray, nose swab and CBC (complete blood count). After a few hours it was determined he had a cold virus called CoronaVirus. His blood counts were all good including his ANC. ANC stands for Absolute Neutrophil Count- it is a measure of neutrophil granulocytes present in the blood. Because his ANC was good they were able to send us home. We got home at 12:30 am. Huge thanks to my wonderful parents for picking Kate up from gymnastics and taking care of her for the evening. Nick had received tickets to the Jazz game that night from the Clinic Life Specialist and fortunately Alex and a couple of his friends were able to go enjoy a night out.

The rest of the week Nick felt pretty crummy between the Chemo and the cold virus. He was nauseous and tired through Friday and ate fairly poorly. The only real reprieve was the daily visit from Dylan our awesome Home Health Nurse. He came Tuesday, Wednesday and Thursday to give Nick his chemo and de-access his port for the weekend. Dylan is great about visiting with Nick and is always so compassionate and kind. Nick really enjoys seeing Dylan and trusts him. Dylan has been a blessing for Nick. It is nice to almost always have the same nurse come into your home, someone Nick is comfortable with and has gotten to know. I know Nick appreciates Dylan.

Fortunately, Nick felt a bit better over the weekend and got out to a movie. He is still having issues with his walking. He is experiencing a lot of pain in his left ankle and hip, we may need to start taking him to physical therapy to work on that. He is regaining some movement in his toes that he had been having issues with, so we are grateful for that. If Nick meets all his counts and stays on schedule he will be done with his intense chemo and start Maintenance on June 19th. His end date is set in stone no matter when he starts Maintenance and that is Dec. 19th, 2019.  Nick will be 16 years old. He will continue to go in for a mixture of chemo and Lumbar Punctures monthly until that date. It feels good to know that date and it bring a little sorrow with it as well. It feels like a long way away, but as people like to remind me 3 years is but a little in our lifetime. I'm sure when it over I will have a different perspective, when you are living it - it can feel like eternity.

Thank you again to the friends and family that have offered support. I had a couple neighbors/ward members bring us in a meal in the last few weeks. They were very helpful and appreciated. We ask you continue to pray for Nick to gain strength, to be able to keep eating and to have less pain- right now primarily in the right ankle and hip. Thank you all!

Making Strides!

Its been a while since I posted but things are going well. The journey has many ups and downs and we still experience that but overall I feel we are having more ups, FINALLY!

Nick had the week of February 20th off and as usual did well. He is starting to cherish those weeks off. No chemo means he feels good and can get stronger. The hard part is going back. The weekend before he went back to start his new phase we had a little party with some dear friends. It was a lip sync party and it was a blast. Special thanks to our dear friends for participating and coming together on some short notice to make it a special evening for Nick. Nick even participated with a number. It was awesome! He also managed to finish his huge Boba Fett Lego Ship.

Nick started his next phase of chemo on Monday Feb. 27th. This phase is a repeat of his first and second month of chemo treatments. The chemo is the same with the exception of the alternative chemo for PEG (the chemo he had the allergic reaction to). For the week of the 27th and the week of March 6th we had the pleasure of going to the hospital for clinic 3 days a week! UGH! He had 2 types of chemo on Monday and then started his Erwinia shots (PEG substitute) on Wednesday. The Erwinia shots are not fun, last time he had them he got so violently sick the following day but he did much better on them this time around. Unlike all his other chemo that is administered through an IV into his port the Erwinia shots are a shot in each thigh. His thighs are usually pretty sore by the 6th day of them. He did very well on them this time, he didn't feel great but did better. The beginning of this treatment also had him go back on a steroid regime, its a week on and then a week off  then one more week one. The first week he was on them his appetite improved immensely. He ate a Firehouse Sub for 5 days in a row, he had to call his grandparents on day 4 as we said "no more subs". He gained some weight that week and proceeded to lose it the next week when he couldn't sleep for 5 days in a row. He was extra nauseous from being so tired which led to some problems eating. He ended up losing the weight he gained the week before but we think we are headed in the right direction.

He was having issues with his feeding tube this past Saturday - it was moving around in his throat and making him nauseous so we decided to pull it out and see how he does. So far he has been eating like a champ! We are hopeful that he will continue to maintain his weight so he can keep the tube out. He had set a goal to have it out by the beginning of May for his cousins wedding and I think he is right on track for that.

He gets a cute video from his Sunday School class almost every week and this week he finally sent one back. It was a win - he has been a little on the shy side, not happy with how he looks etc. I was pretty happy he wanted to do it! Alex made the Taylorsville High Soccer team again and picked number 18 as his number. That is Nick's number, it is super sweet that he did that in honor of Nick. Alex really has been great with Nick and I am really proud of him!

We see this wonderful quote every week at clinic. Nick and I love it!

Nick is such a strong kid, I am super proud of him. He has gone through some terribly hard and painful things. Things no one should have to experience. But he is getting stronger, feeling better and it makes me so happy! Every day is different and there are lots of ups and downs still but he is going to beat this and be an even more amazing young man than he already is.

Again, I can't tell you how extremely grateful we are for everyone's love, support and prayers. Keep praying Nick keeps getting stronger and keeps "Giving Cancer the Boot"!

An Abundance of Love

We are overwhelmed with the outpouring of love we have experienced in the last 2 weeks. Thank you to everyone who have thought of us, prayed for us, texted me, or dropped something by. Our hearts are overflowing with love and appreciation for all of you.

We had a couple different people do 14 days of Valentine's for us. It was so fun to receive a treat and/or little something special everyday to remind us we have an army of people who love Nick and our family and are cheering us on. It was humbling to have such an abundance of love shown to us.

In addition to the 14 days of Valentine's, we had a surprise last night- Valentine's night! We live in an incredible neighborhood and it is divided into 2 wards ( the 8th ward and our ward the 9th ward). The youth and leaders from the 8th ward surprised us last night with a visit. They brought LEO the Lion from REAL Salt Lake Soccer and gift baskets for everyone. It was awesome to see some of Nick and Alex's friends in that group and it was great to feel the love and concern they had for Nick. WOW! They sang the REAL Song and it was a really special experience. Nick has had a couple fairly rough days, a pretty bad tummy ache and nausea and the visit was really great. He needed it! Heck- we all needed it!

I can't even begin to express our appreciation and love for you all. I tear up thinking of all the acts of charity that we have been the recipient of over the course of the last 5 months. It is so overwhelming. They are all appreciated, whether it was a meal, a card, a treat, a fundraiser, a gift - we LOVE and appreciate every act, we LOVE and appreciate everyone of you! Thank you for  lifting us up as we traverse this difficult path. Thank you for helping, caring, loving and praying. We could not have made it this far without you- THANK YOU!

Nick's Last Inpatient Chemo- YAY!

Nick checked in to Primary Children's last Monday February 6th for his last Inpatient Chemo. We started the day by checking in at admission then going up to the fourth floor cancer unit for his port to be reaccessed before going to his room in the third floor overflow (he was one of two patients on in that pod for the majority of the four days there). The Chemo this time around made him nauseous almost immediately which is never great, but he hung in there like a trooper. The chemo ran from Monday afternoon to Tuesday afternoon. Then we wait it out to clear his bloodstream. The last couple Inpatient Chemo have been really hard on Nick emotionally. He strongly dislikes having to stay at the hospital for the chemo and between the sleep deprivation and feeling crummy he was struggling. We took Alex up on Tuesday night and went down to the Kid Zone for some video gaming. It is always good to get him out of his room, and it was nice for him to see Alex. He really misses Alex, Kate and the dog when he isn't home. He was able to clear the chemo well again and was released from the hospital on Thursday night.

We are all very happy to have that phase of chemo behind us and Nick is happy to go back to clinic for chemo from here on out. He has this week and next off before starting his next phase of chemo on Feb. 27th. The next phase runs approximately 60 days and consists of an array of chemotherapies he has already had. After this phase is one more that is approximately 60 days as well. That means we are a little past half way through his intense therapy. Once he completes those phases he will be in Maintanence and go monthly for chemo and continue an oral chemo at home daily for the course of 2 more years. Although we have a long road ahead we are lookin forward to Maintenance and for Nick to be able to go back to school, friends, soccer and all the other things he loves.

Nick got some good news last week while inpatient. His fungal infection marker dropped to 91 from the previous mark in the 200's. The best part about that is that he was allowed to be taken off his IV fungal medication which means... He doesn't have to be accessed all the time! YAY! This means the cute boy can get real hugs, shower without an aqua guard covering most his chest, sleep in whatever position he wants and move more freely. When his port is accessed ( which has primarily been 24/7 since it was placed in October) he had a 3/4 inch needle sticking out of his chest. Not having it accessed all the time is allowing him to feel more normal and be more comfortable. We are working on improving his quality of life - YES!

We are grateful for everyone's love, support and prayers. Keep praying our boy keeps getting stronger and keeps "Giving Cancer the Boot"!

Home Sweet Home

We have had three pretty good weeks. Nick missed his count requirements to restart chemo on Monday Jan. 16th and was blessed with an extra week off, which was wonderful. He got to be home for Kate's birthday which was important to him and he saw a couple movies. "Hidden Figures" being his favorite. We all really needed that week off, it was a blessing.

Nick started his 3rd inpatient chemo on Monday January 23rd. He started the day in clinic to be reaccessed, visit with his doctors and then down to the Children's Procedure Center for his lumbar puncture. We got some good news regarding his fungal infection in his spleen. It has always been so high it couldn't be measured as it was above the 500 mark. We found out it is improving as it is now within the measurable perimeter at 280. So EXCITING! So good to know that is improving, we felt it must be with his fevers decreasing, but more reassuring to get the marker to reflect it.

We had a great time in the Children's Procedure Center recovery that day as well. Nick's neighbor was very entertaining. Nick had a teenage girl next to him coming out of anesthesia and boy was she hilarious. She was talking so loud everyone in recovery could hear. Nick, Bryan and I couldn't stop laughing. It was so funny. Her mom kept offering her a drink in hopes of getting her to settle down and talk less. It was a no go! I think every person in the recovery area was busting a gut. Oh my!! It was the best. We seriously talked about it for days and you all must hear Bryan's imitation of it!

After his procedure we were sent back to clinic to get Nick started on fluids before his chemo. We hung out there a few hours til a room became available in the cancer unit. He got into a room and started chemo about 5 that night. Nick really struggled this stay. The more time he is at home, the less  he tolerates the hospital stays. Home is always better!! To help boost his spirits we took him to some new areas of the hospital. He visited the Ronald McDonald Room and sat in a recliner for a bit. We also ventured into the Kid Zone for the first time and he played Xbox for a while and got a bucket full of stuff to entertain him in his room. It was a nice change of scenery. He cleared the chemo great that week, got released about 7:30pm Thursday night! Yippee!!

Last week was a very nice week off minus a couple bouts of nausea and throwing up his feeding tube.  Nick woke up Friday feeling the best he had all week, he even went and sat at Kate's gymnastics meet, which was several hours long. Saturday he got out with Bryan and Alex to Target, Team Gear (a favorite soccer store) and a movie. It was a good day. Yesterday Nick had his labs drawn for his admission today, all counts were met so Nick will be starting his last round of inpatient chemo today(YAY!!!). We are very excited to get the inpatient chemo done and go back to getting his treatments at clinic.

Nick's strength seems to be improving and for this we are extremely grateful. He got a wonderful gift from a neighbor that we have placed in the family room so he can see it everyday. It is a plaque that reads " Tough times never last, tough people do". It's a good reminder for him every day! As his strength is improving we are seeing more of our playful, funny Nick. He seriously says some funny things. One night last week when I was saying good night, he said to me all seriously " Mom, I've been thinking. In my next life I want to be an elephant!" I started laughing so hard. Just a little background on that- there is a doctor up here who has been studying Elephants. Elephants are the largest animal and have the most cells thus it would seem they would have the highest rate of cancer. Yet they do not, they have overall the lowest rate and this doctor is researching a better way to treat cancer. It may lead to some new ways to treat cancer rather than the poison that chemo is.

Another couple funnies from Nick is him telling Kate he could perform her gymnastics bar routine better than her. This morning when the nurse told Nick his port was so good she could access it with her eyes closed. He said "well lets not try that" and laughed. The kids been cracking me up all week. There was another night I went down to say goodnight and Bryan, Alex and Nick were all laying in Nick's bed watching something on the iPad and laughing, I could hear them laughing from upstairs while I got ready for bed, it was awesome. I would have taken a picture if they'd let me! These are the things I LOVE!

Our family has been so blessed this month with love! I have received loving messages of support and thoughts and prayers for Nick and our family. Some special friends we Love have been giving us tokens of love for the 14 days to Valentines! Kate has loved running to the door and bringing in the surprise. One of my favorite parts is the quote attached to each one- uplifting and inspiring!

Another anonymous friend has been dropping a treat off daily, we feel so loved by these sweet acts of kindness. So many have brought much needed meals, thoughtful gifts and other tokens of generosity. The love we have received from each one of you is truly incredible! We could not have made it this far without your love, prayers, acts of kindness, generosity, and support! We feel your love daily and have been lifted up! Thank you! It feels inadequate to just say thank you, please know it is greater than that. It's a huge sincere hug from me to each and everyone of you! My heart is full!❤️