Viruses

Nick has had a rough 6-7 weeks. On Feb. 6th he tested positive for Influenza A and was put on Tamiflu for 5 days to hopefully alleviate the severity of the symptoms. He felt better while on the Tamiflu but once he went off he was still feeling rather crummy. He had a lot of congestion and a very runny nose. I kept calling clinic nearly everyday but they assured me it was common for immonucompromised kids to take up to 6 weeks to recover from a virus! Not what a cancer mom wants to hear as that basically confirmed I was going to worry about him for several more weeks.

February 22nd was his regular monthly clinic visit. He started phase 4 of Maintenance with a Lumbar Puncture (which he did unsedated again!- he is incredibly brave), the chemo Vincristine, and a treatment of bisphosphonates for the leg pain/ bone inflammation. His CBC (complete blood count) was fairly low. His ANC (absolute Nuetrophil count) was 600, 500 is considered neutropenic ( unable to fight off infection or virus). For Nick this is the lowest his ANC has been since the first 2-3 months of treatment. This had Bryan and I concerned but the doctors attributed it to the Flu Virus he had.

The next 2 weeks were full of worry as Nick didn't seem to be getting better and was struggling with feeling really weak and tired. One day I needed to make a quick trip to Sam's Club for a couple of items for dinner and he wanted to go with me to get out of the house. Once we got there he felt super weak and realized he was not able to walk around and get the few items we needed. We ended with me helping him walk right back out to the car to drive home. He was napping twice a day and he definitely wasn't feeling so hot. By Thursday March 8th both Nick and I felt something wasn't right. Our home health nurse Dylan was scheduled to come access his port for the week and so we emailed our care coordinator, Chelsea, at clinic to ask if we could please schedule a CBC to be drawn. As it was late afternoon we told her to just let us know the result in the morning. Friday the 9th Nick woke up with horrible stomach cramps. Chelsea emailed us to let us know his counts were very low. His ANC was down to 200, as well as his platelets and hemoglobin being low. Bryan called in and spoke with her about the counts and the stomach pain but they said if we can make him comfortable at home we could stay home. He was running a fever right around 100' but it was holding steady. They said we should hold his at home oral chemo in order to allow his ANC to recover and to call if we had any other concerns. About an hour later Nick was throwing up and Bryan and I decided we really needed to take him in. As a parent of a cancer kid, this is one of the hardest things... there are lots of times we have asked for a CBC and all is fine, there is times I just want to take him up to clinic and have them make him feel better. It is honestly SCARY and STRESSFUL being the ones to decide what to do sometimes. We are lucky Nick is 14 and can tell us when he feels horrible- he is also very good at telling us when he needs to go in and has several times.

By around 11:00 am we were in clinic. After a quick set of vitals they started him on fluids. Within a half hour of getting there his fever started to climb and before we knew it he had a fever of 102'. So glad we were there so he could get his blood cultures drawn and a quick dose of Tylenol. They ran a few tests and quickly found out he was still positive for Influenza A, between that and the fever they decided to admit him for a night or two. They started him on antibiotics and got him in a room fairly quickly which was good. We also found out he tested positive for C-Diff which is a rough virus to that affects your GI tract and explained the horrible stomach cramping. He ended up staying Friday and Saturday night. Saturday I even got him to do a couple crafts, which he has never done while inpatient (because he was always so dang sick or depressed). He made a quick little bead and pipe cleaner snake as well as a pretty cool duck tape wallet. I hung out all day and Bryan spent the nights. Friday he was able to get both a platelet transfusion as well as a blood transfusion, which gave him a some energy so that was great. Sunday morning the plan was to release him by afternoon. He ended up getting a pretty serious nose bleed that required a nose clamp and a few tampons- lucky kid. He completely hates bloody noses, seriously he has told me multiple times that he would rather have 2 shots a day than have a bloody nose. They ended up giving him another platelet transfusion and he was discharged and we got home around 5:00 pm Sunday night. Monday was scary as he woke up feeling super weak and Bryan had to carry him up the stairs- our stress levels were on overload but luckily he seemed to perk up as the day went on. Tuesday afternoon while Bryan was at Alex's soccer game and then had gone to donate platelets Nick had another bloody nose that we got under control to only have another one start about 30 minutes later that we couldn't get under control. When I say bloody nose, it is literally dripping down his face nonstop if we don't have a wad of tissues blocking it- it is not a good feeling to not be able to get it to stop. After the second one started I called the on call Oncologist and explained what was going on. She had us come up directly to ICS instead of the the ER- which was awesome (we love not having to go to the ER). We got up there about 7:30 and I am so grateful my parents were able to meet us and help park my car while I got Nick inside. Hospital time is the worst as everything literally takes forever. He got platelets and a CBC and we got home about midnight.

Nick and his cool duck tape wallet!!

Because they did the CBC at the end we found out about 11:30 pm that his hemoglobin was pretty low and he would definitely be needing some blood as well but I wasn't wanting to stay another 4-6 hours for that.  His ANC had also tanked a little more and was now at 100.  The next morning we decided to call Chelsea and schedule us to head back up to Primary Children's for blood. We got there about 11:00 and they did his type and cross and got the blood ordered pretty quickly, but it generally takes about 2 hours to get. During what ended up being almost a 4 hour wait for the blood we saw the nurse practitioner and an Oncologist about a rash Nick was developing and an ear being clogged. After a review of his new meds he was on for the two viruses it was decided it was most likely one of 2 antibiotics he was on or had been on inpatient that was causing the rash. The one he was still on for another week was changed in hopes of improving the rash and accompanying itch. It was by far the worst rash the kid has ever had and he has had his share during chemo. This rash covered his entire body and was so red and miserable looking. They even had dermatology send a couple doctors over to look at it, they verified it looked like a medication reaction. They were able to prescribe a pill and a cream to help with the itch but in all honesty Aveeno ended up helping the most. Gratefully the rash started to go away in a couple days, he still has some itch left but it really could have been much worse.

After 5 of 6 days spent at the hospital we were blessed to have a nice, quiet weekend at home watching basketball and enjoying all the upsets in the NCAA tournament. Nick started feeling better and his appetite picked back up so it was overall a pretty great weekend! YIPPEE!

Today- Monday March 19th was our regularly scheduled visit to clinic. Nick had his Vincristine chemo and the bisphosphonates infusion again for his bone inflammation in his legs. His CBC looked a lot better. He had rebounded to 700 on his ANC and both his Hemoglobin and Platelets were much better. They went ahead and restarted his daily oral chemo dose at half of where he was and will increase it slowly while keeping watch on his ANC. His legs are still doing amazingly better pain wise and we continue to be super excited for the relief as well as the hope of gaining back some leg strength so he can be more active.

We are so grateful he is doing better, it was a reminder that these little hiccups can happen during the rest of Maintenance as he is taking chemo every day. He has been very blessed to not have many issues with viruses as some kids experience a lot of issues with them during frontline treatment. Nick has a cancer friend that he can text with that can relate to his experiences and allow them to vent to one another when going thru some difficult times, I am so grateful for that. I am grateful for the cancer moms I know primarily on social media that are so loving and supportive to one another and allow me a place to feel entirely safe and understood. This is a pretty lonesome journey at times... Nick and I spend a lot of time together, I work and he does school but other than that we don't spend a lot of time with other people, its comforting to have some contact with others in the same boat for sure. I can't believe all the amazing moms and dads out there with childhood cancer fighters, angels and survivors! You all inspire and lift me everyday!

We are very grateful for some pretty great people in our lives that were able to help on a seconds notice: my parents visited in the hospital and brought us dinner the Sunday night Nick got released, my sister in law Bonnie picked Kate up from gymnastics for me on Saturday so I could go to the hospital during the day, my neighbors/friends Krista and Kristin helped with Kate both Friday afternoon into evening and Saturday afternoon into evening. These acts of service along with lots of love and prayers mean so much to us. Thank you from the bottom of our hearts. We are super glad to have this little not so fun excitement over with and pray Nick will continue to have more good days than bad.

I have collected a few more of these inpatient parent badges than I 'd like! :p

Once a week I get this set up, Nicks meds for the week!

Learning Perspective!!

The last three months were good ones, we have been busy. Nick continues his daily oral chemo as well as monthly clinic visits for chemo with some including LP's (Lumbar Punctures). He is visited by his home health nurse Dylan every week to get his port re-accessed. After about a month break from physical therapy, while we tried to figure out the leg pain, he has restarted that this year. He continues to go to foot zoning about every 10-14 days and we have been going to the orthodontist more often in hopes of getting those braces off sooner than later. We also squeezed in a fabulous Christmas getaway to Arizona and had a wonderful Christmas with Bryan's family there.

Nick had a bone biopsy of his ankle (an area with extreme inflammation) in November that unfortunately yielded no real answers. The inflammation is not due to a bacterial infection or the fungal infection. We visited both a orthopedic specialist and pediatric rheumatologist regarding the leg pain. The orthopedic specialist felt his muscles were extremely tight in his legs and that stretching several (5) times a day would be helpful. He was slightly concerned with the inflammation in the MRI and said he really hadn't seen anything like it. A couple of days later we went to the pediatric rheumatologist who is also a CRMO expert.  She was very thorough but also a filled us all with a bit of despair. She spent over 2 hours with us, examining Nick and getting his full history from us. She was concerned he may have an autoimmune disease or an issue with his muscles as they were showing on the MRI much lighter in color than they should have. She felt possible edema in his muscles was of concern. She also admitted that due to him having cancer she would be hesitant to actually diagnose him with any of the diseases she works with, but she was eager to help us find some relief for the pain. She had our home health nurse pull about 7 vials of blood for labs! We were happy when we heard back from her that nothing was out of the ordinary minus 2 test results that were a little elevated due to his chemo (which is to be expected). Even though it was good news, at the same time it was a bit disappointment due to no real answers, yet again. When she called me she did discuss the option of trying an IV medication known to help in some CRMO cases. It is called biphosphonates and it is an IV medication they administer once a month. The rheumatologist said if he tried it she would like him to try it for 4 months and then have another MRI. Nick, Bryan and I decided it was worth trying and we would judge the results based on how Nick feels. He had his first treatment of this medication the end of January and I am excited to report it appears to have helped. Nick's legs have been feeling a lot better, no pain, only aches from stretching and physical therapy. He is walking a lot better and with a little quicker pace! YAY! This is a big step towards him being more active and able to do more of the things he wants to do. I am super excited for him and pray that we will continue to see improvement as we continue the treatments.

The fungal infection continues to be an interesting complication. His Fungitel (blood Test) level is now <31 which is considered negative for fungus. The infectious disease doctors prefer to keep pediatric cancer patients on fungal medication until the end of treatment as their immune system is being suppressed. For Nick this is a little more complicated as he only shows progress when using the IV fungal medication which complicates the matter as he has to have his port accessed all the time for the medication. A part of me is relieved that the doctors have finally admitted to us that he may have to continue on that medication till the end of treatment rather than give us false hope that is may only be a few more months every time we discuss it. Yet another part of me is frustrated with the thought of him having to deal with that for another 2 years. It is trivial in the big picture but it is something I have a hard time with.

In December Nick also opted to try his lumbar puncture without anesthesia. Anesthesia has not been Nick's friend! He doesn't like fasting prior to the procedure nor does he like how crappy he feels upon waking up and through the following day. A lumbar puncture consists of a poke into his spinal cord to pull out a little sample of spinal fluid and then a injection of a chemo called Methotrexate into the spinal fluid. Nick had the procedure done on the 4th floor in the Cancer Inpatient unit where they have a procedure room. The doctor comes in and they have already numbed the site with the same numbing cream they use when they access his port. They then do a shot to numb him more and then the procedure literally takes about 5 minutes. Bryan watched the whole thing, I am not good with those type of things so I opted for a seat where I could not view the procedure. Nick said it was a little uncomfortable but way better than doing anesthesia, he is opting to do the rest of his LP's un-sedated. He loved how much better he felt afterwards and the fact we didn't have to go to the Children's Procedure Center. He is one brave young man and continues to amaze me.

Nick has a new love. Soccer was his love before his diagnoses. This kid played some amazing and beautiful soccer. He was truly a talented soccer player, smart, could picture the entire field and make the most amazing plays. I may be a bit biased but he was an amazing player. Nick's new love is JAZZ Basketball! He loves to watch the Jazz, follow them on Instagram, and thinks Donovan Mitchell is awesome. It is awesome, he knows more about the Jazz than his brother and dad! That is saying a lot! I am so glad he has a passion for something again, he needs that in his life. It has been really good for him.

I was extremely concerned about school this year as Nick really did almost no school last year. He has been keeping pace and I am so proud of how responsible he is about doing his work.  He does online school and takes full responsibility for it himself. I never have to ask him to do it or anything, and he is such a perfectionist he expects the best from himself. Only A's make him happy, preferably 100% in every class. Just today I was reminding him that he just spent last year fighting cancer and to not be so hard on himself. I am really proud of him for exceeding my expectations for the year and pushing himself even on days when he is not feeling his best. This kid is a fighter and hard worker.

Many things have happened over the last few months that have given us some "perspective" regarding our trial and the trials of friends and loved ones. A cancer family lost their little boy to cancer a few days before Christmas, a good friend injured his spinal cord on a family vacation and is now a quadriplegic. Many other neighbors/friends having some big trials and losses as well. "Perspective" is something hard to come by sometimes in the midst of a trial, everyones trials are difficult and hard in their own respect. Last year my perspective was so focused on Nick, and his emotional state usually rubbed off on me. Some of these people have amazed me with their strength and positivity, I have a lot of room for growth there still. Faith that it will all work out is something I need to tell myself everyday. I also have a strong urge to find a way to help other childhood cancer families. I have been contemplating since the new year where I am suppose to be making a difference, I feel strongly there is something I have to give to this cause. I have another 2 years to take care of Nick but I believe as he gets stronger I will be presented with an opportunity to help others, to ease the burden of this journey for some other families out there. I pray I will be able to make a difference in some small way.

I realize how blessed we are to have Nick here with us. I also realize the time I have worried about his quality of life, what he may never be able to do again, if he will get to go back to school before he is done with treatment at the end of 2019- all of these things don't really matter, he is here, with our family, where he belongs and we will take it a day at a time. Life is good, we are cherishing our time together!

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!!