Hard Chemo and Lots of Love

Nick has had a couple busy weeks of chemo followed by one week off! Yay for a week off!

Nick spent two weeks getting two shots (one in each thigh) of chemotherapy every Monday, Wednesday and Friday. This particular chemotherapy is the substitute for the one he had the allergic reaction to on Halloween. I was dreading how bad the shots were going to be and have been sideswiped by how hard the chemo has been on instead. Nick has generally handled the majority of his chemo well. Some have made him fairly nauseous but he had never thrown up.

This chemo really knocked him down. He vomited after every chemo shot within about 16 hours. As we moved into this second week of the same treatment the vomiting has become worse and he was sick for a longer duration each time. He threw up his feeding tube and had to have it reinserted. It was really hard to watch him feel so miserable and know he had to do it again 1-2 days later. He has lost part of the weight he had gained which is frustrating but he should be able to gain it back. His next phase will consist of inpatient chemo and we have been told most kids tolerate it fairly well.

In the middle of these 2 weeks of hard chemo there was a bright spot. We were able to surprise Nick with some t-shirts my niece had made to support Nick in his fight against Leukemia. We had a family gathering to surprise Nick with the shirts and I think it really boosted his spirits. It has been so fun to get pictures sent to me from all the friends and family that ordered shirts. They sent us pictures in their shirts for me to share with Nick and I hope to make something with all of them. The love and support from that has been humbling and really helped. It has been super fun for us to see so many people cheering Nick on!

We also had the privilege to attend a Taylorsville High Assembly last Friday to help them Kick off their Charity Week. The SBO choose to benefit Nick for their Charity Week thru Millie's Princess Foundation.  Millie's Princess Foundation is a foundation set up to raise hope, funds and awareness for childhood cancer. We have been overwhelmed by the support and love. The students at Taylorsville were so excited to help Nick because Alex is a junior there. The students we have interacted with so far have been so compassionate and sweet with Nick. The Assembly last week was very emotional. It was very uplifting to be there and feel all that love and support.

Nick had this past week off Chemo and it was good for him. He is frustrated daily by his lack of energy and not feeling great. It makes him sad. Fortunately, he has 4 people in this house that love him very much and will spend all their energy trying to boost his spirits. We love him and are so proud of him.

We are so grateful for everyone's love and support! I would like to ask at this time for you to pray for Nick to feel better and be able to get stronger.

An Attitude of Gratitude

We have so much to be grateful for. Nick's illness is very challenging and difficult but we are still blessed daily and I see lots of things we can be grateful for every day. A few years  back I did a gratitude Journal for the year, everyday reflecting on something that I was grateful for. It was a very rewarding experience. For even on hard days or in times of trial there is always something to be grateful for. The past week or so I have been reflecting on the many things I can be grateful for now.

• We are grateful that Nick has been home 25 days in a row. This is the longest time, by double, that Nick has been home since being diagnosed. We have loved having him here and a grateful for that every day.
• We are grateful that Bryan has a job that is flexible enough that he can be at the hospital with us for appointments and when Nick has been hospitalized. 
• We are grateful my parents live here and are able to help with anything and everything we need.
• We are grateful to live so close to a great hospital like Primary Children's for Nick's treatments.
• We are grateful for sweet texts, cards, treats, meals and everything else that so many people have sent and brought to us. We feel so loved!
• I am so grateful for my niece, Whitney, who took up a huge project and got some t-shirts made for Nick's fight against cancer. I am so excited to see almost 300 people sporting the Nick's Kicks t-shirts. I just know that it is going to mean so much to Nicklas and I just know it is going to be huge in lifting his spirits. I am beyond excited for him to see all the love! I am so appreciative for all those who made donations as well. I am truly touched and humbled by the generosity of so many! There is so much good in the world and I have witnessed it beyond imagination in the last 3 months.
• I am grateful to witness Alex trying to cheer Nick up. Alex has made Nick laugh so hard Nick had to ask him to stop because it was making him sick.
• I am grateful for Kate and the special relationship she has with Nick. She has sat with him compassionately for hours and has helped comfort him while he gets his daily shots in his tummy. Her love for him is so sweet and pure.
• I am so grateful for Bryan. He is my rock. I have had a few serious breakdown on this journey and without Bryan I do not know what I would do. Some days are unbearably hard for me and I am so grateful he lifts me up and comforts me. I could not do it without him.
• I am grateful every time we convince Nick to go on an outing. He easily tires and rarely feels really good. When we can get him out of the house even for an hour, it lifts his spirits as well as the rest of ours. That is a blessing for the entire family!
• I am grateful for the special times I have had with Nick. He is a sweet, loving 13 year old that tells me several times daily that he loves me. He says it with sincerity and gentleness that fills my heart. I never want to forget how much I have felt his love for me over the past few months. 
• I am grateful for our Heavenly Father and the comfort and peace he gives us at night when Nick and I pray together. 

This list is probably just a start to all the things I am sure I have to be grateful for. I often lay awake at night processing in my head what should go in this blog and I am 100% certain I have forgot many of the items I had come up with in the last 2 nights. I am grateful for so much, and although this journey is long and difficult, I pray that I will continue to count my blessings. I know that by having an attitude of gratitude we will be stronger and it will lift us in times of trials!

What a Journey!

So this is quite the Journey! A journey we have been on for 10 weeks already. I still can't believe it has been 10 weeks since we found out Nick had Leukemia!

It is emotionally, physically and spiritually draining on all of us. I feel Alex and Kate getting lost in the chaos and it makes me sad. I see Nick struggling most days and it makes me sad. I have not been the best example of positivity as of late and I am being reminded of it by others. I am struggling and it makes me sad.

I am learning to have a greater appreciation for the little things again! There is joy when Nick cracks a joke and we all get a good laugh (the other night when his dad and grandpa couldn't figure something out- Nick said "give it to the kid with Leukemia- I can do it!"). There is joy when we can get Nick out of the house for an activity other than a doctors appointment. There is joy watching Kate or Alex interacting with Nick in a compassionate, loving way!

It is hard to look over Nick's journey so far but it helps me remember - we will get through it. Thus far Nick has:

• Spent 27 out of the last 70 days in the hospital ( with the longest span at home marked today at 12 days)
• Had at least 4 IV lines put in
• PICC line placement and removal
• Port placement
• 4 CT Scans
• 2 X-Rays
• 1 MRI
• Multiple ultrasounds
• 7 Lumbar Punctures
• 2 Bone Marrow Aspirates
• Shot in his left Eye
• Surgery on Left Eye
• 17 days of Chemo Treatments
• 1 Allergic Reaction to Chemo with overnight stay in ICU
• 8 times under Anesthesia
• 5 plus weeks of 2x a day shots in stomach for a blood clot

I can hardly believe he has gone thru all that in 10 weeks. He is one strong, brave young man. He has really hard days and some really sad days too! I spend a lot of my days with him trying to cheer him up, encourage him to do something or just sitting with him! School has been sporadic due to him being hospitalized, to sick to do homework and not having clear vision out of his left eye for a week after surgery. We are getting back on track with the school work and I think that will be good for him!

He has great friends, some of his soccer friends have come for visits and some of his school/neighborhood friends have brought posters, cards, banners, balloons, treats and gifts! All have brightened his day! We are so grateful for those visits because they do brighten his day and lift his spirits!

My parents have been amazing- they have sat with Nick for a few hours so Bryan and I can go somewhere just the 2 of us, they have taken Kate to gymnastics, brought us everything and anything we need when in the hospital, met me at the hospital to help get Nick in a wheelchair and then go park my car for me, been to my house early to get Alex and Kate off to school on days we have early doctors appointments and they went to Kate's last Elementary School Halloween Parade because Nick had Clinic that day!

We are so humbled and spiritually, physically and emotionally lifted by so much generosity from so many loved ones- friends, family and neighbors! 

They have generously and lovingly-

• Provided an abundance of meals
• visited us
• driven my morning carpool for me
• prayed for Nick
• Added Nick to many temple prayer rolls
• Fasted for Nick
• Brought Nick and the other kids gifts to lift their spirits
• given/sent loving cards and notes
• brought balloons
• dropped off treats
• Organized Fundraisers to help with Medical, travel and food expenses associated with Nick's illness and hospital stays.
• visits from out of state family
• I am also grateful to have a job that has granted me unlimited leave and given me the choice and flexibility to work when I can or as little as I need ( Hopefully they'll still need and want me at the end of this Journey)

Nick went to the eye doctor Friday and his eye is continuing to improve. We are very grateful for that. Today was clinic and Nick is on the same 4 week plan as the last 4 weeks minus the lumbar punctures every Monday. He has chemo 4 days on and 3 days off this week and next and then week three was the week he had the allergic reaction to a drug called PEG. Instead of that chemo once, he will have another chemo that is given by shots 3 times a week for the last 2 weeks. 

Thank you for all your continued love and support!

A Great Weekend and a Halloween Fright!

Last weekend was lots of fun. Started with the Jazz game Friday night. We only stayed till half but that was great for Nick and we really had a nice time.

On Saturday we had the pleasure of the Stake President and John C. Pingree Jr. of the Seventy visit our home for a visit Saturday. It was Stake Conference weekend and it was nice to have them come talk to us in our home and provide some spiritual comfort.

We also had fun going to a movie and carving pumpkins. We were so glad Nick was up to all that and enjoyed it!

Monday, Halloween was Nick's regular clinic visit day and so off we went to clinic and my wonderful parents went to Kate's Halloween parade! Thanks Mom and Dad! Clinic consists of blood draw, meet with doctors and then procedures and chemo depending on the schedule! 

That day Nick was scheduled for a Lumbar Puncture and two types of Chemo. He had his blood draw and then we met with his doctors and then down to the Childrens Procedure Center for the Lumbar Puncture. We got back up to clinic to start chemo around lunch time. One of the chemo's was just a push in his port the other was a 2 hour drip. The chemo for the drip was a treatment he had once before in phase one of treatment. They watch you closely when you get it the second or third time as around 10% (what we were told) of kids have and allergic reaction. Nick got thru almost the entire 2 hours and during the flush started saying he was cold and shivering uncontrollably. He had like 7 blankets on him and was just shaking and then he said his chest was hurting. A lot of doctors and nurses started coming in his room and it was decided to stop the flush for the last remaining medication and determined it was likely an allergic reaction. Nick was given a high dose of Benadryl and Steroids to help counter the reaction, and an EPI shot was prepared and ready if needed. The Rapid Response Team from ICU was called up to analyze the situation and it was agreed by all that he would stay overnight in ICU. There they could monitor him and make sure he was safe. 

It was a pretty scary experience for Bryan, Nick and myself. So glad all the doctors were there to make the right decisions for Nick and take such good care of him. We are so grateful for Kathy, the social worker at Primary's, she came up and was so great walking us through what was going on and preparing us for ICU. She is the best. We are grateful for the clinic nurse we had that day who was quick to react (despite his reaction being so unusual) and I am appreciative to her for talking so kindly to Nick when they were getting him ready to transfer to ICU. He was scared and she spoke to him calmly and kindly and told him everything was going to be ok and to just keep breathing and try to stay calm. It was amazing.

Nick was released from ICU by mid-day on Tuesday and sent up to ICS (Immunocompromised- Cancer- Transplant unit where we always stay) for another nights observation. He came home late yesterday afternoon after getting a blood transfusion to boost his red blood cell count. We are glad he is home... he has been having issues with fevering since we got home and hope he will start feeling better so he can squeeze in some more fun! Love that kid and we are so proud of him. This battle is hard and he has been so strong and brave.

I have to share one more thing because I don't want to forget it! Nick is a sweet kid and over the last few weeks I have observed, often on the days where he is feeling his lowest that he is quick to share his gratitude. I have now observed him personally thank his nurses in the kindest and most humble tone. He thanks them by name " Thank you Meg!" or "Thank you Rachel!" It is seriously the sweetest thing I have ever witnessed. He does this also with me, often in the middle of the night when I get up with him to go to the restroom or fix his feeding tube or get him meds. Its always followed by a "Thank you Mom!"  In ICU Monday evening he and I were alone in his room- as I sat by him, I noticed him watching out the glass doors, where all the nurses and doctors were going by. He turned to me and said " see all those people, taking care of me, taking care of others- I wish I could take care of and help someone and didn't need all those people taking care of me!" It made me cry. That kid is going to grow up to do something amazing, of that I have no doubt!!

Feeling Grateful!

Friday Oct 29th was a really great day! Nick had a follow up post surgery eye appointment and it was wonderful to see that his vision had improved. The photos of his eye showed that the fungus in the eye had gotten a little smaller and we were so happy to hear they didn't need to give him another shot in his eye. YAY!

We also had the pleasure of going to the Jazz game yesterday evening. Thanks to Kathy- our social worker at Primary Children's- we went to the game as a family and it really was great for Nick's spirit. He had a fun time and even though he only lasted till half time it was a great evening. We are grateful to Guest Services at the Arena for picking up Nick in a wheelchair at the curb and getting him to his seat. He originally thought he wouldn't be able to go as he knew he wasn't strong enough to handle all the walking. As a bonus the sweet Guest Services Representative that helped us out took us over to meet Thurl Bailey while Bryan went to retrieve the car! He was so nice and gentle with Nick and it completely made my night. We all couldn't get over how tall Thurl is. What a great way to end the evening.

It was a great day overall. It was so great to see Nick happy and enjoying himself. It was fun being able to go somewhere as a family together. It was amazing. We are grateful for all our blessings and the love and support of all our family and friends.

Hope and Enduring to the End

In October 2008 General Conference, President Dieter F. Uchtdorf gave a talk titled "The Infinite Power of Hope". Hope in God, his Goodness, and His power refreshes us with courage during difficult challenges. There have been many a day in this difficult journey that I have been in despair. There have been days where we feel we simply cannot handle one more hurdle or watch Nick endure one more second of pain or misery. It is hope that carries us on. Hope that the doctors can find a way to effectively treat the fungus, hope that the chemo treatments for the Leukemia will be effective, hope that Nick will start getting some strength back and have more good days that sick days, hope that Nick will experience less pain, hope that he will stay positive and continue fighting. Most of all we hope Nick and our family can and will endure to the end.

"Hope is like the beam of sunlight rising up and above the horizon of our present circumstances It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in Heavenly Father" (President Uchtdorf, General Conference Oct. 2008)

There have definitely been days where hope has been distant and despair has reigned. We work daily to have hope and stay strong, especially for Nick. The reality is this is an emotionally and spiritually trying experience. We can't possibly expect to go through this process without experiencing some breakdowns as well as some feelings of loneliness, fear, anger and despair. I have found for me personally releasing those feelings is usually very therapeutic and allows me to pick myself up and be stronger the next day! I want and need to be strong for Nick. He needs us to build him up and help him stay positive.

Nick has been through a lot in the last 2 weeks. On Monday Oct. 10th he had a follow up visit at the Moran Eye Center with his Retinal Specialist. Due to the fungal infection being present in his left eye it needs to be monitored to make sure it doesn't start affecting his vision or the fungus get more prominent. Unfortunately, on that day it was determined that one of the fungus spots had gotten larger and the other smaller. The specialist determined that a shot in Nick's eye was needed. Nick did a great job and got the shot that day in the office with them just numbing his eye.

The remainder of the week of the 10th, Nick was on a week long break from chemo before starting his next phase of treatment. He was hoping to go to a couple movies and do some other fun things as his blood counts would be going up allowing him to not be so immune compromised. His blood counts were rebounding as expected but it is likely the increase good white blood cells which fight off infection that caused him to fever and be sick the entire week. Those good cells were likely trying to fight off the fungus infection which made Nick super tired and weak. He was sick the entire week.

Monday, Oct. 17th Nick got his port put in. We are grateful to have the port finally in and hope everything continues to go well with it.  It ended up being a painfully long day with us leaving our home at 7:00 am and returning home at midnight. Besides the port, he got a lumbar puncture, two bags of blood and chemo treatments.

Tuesday and Wednesday Nick was pretty droopy. We figured it was from the anesthesia and the surgery itself and he seemed to be feeling a bit better by Wednesday evening. We enjoyed watching a movie as a family before turning in for the night. Thursday morning after starting to run a fever he told me he felt like garbage and wanted to go to clinic. We called in and headed up to clinic to see if they could help him feel better. After a few hours there and some discussion with Nick and his doctor it was decided to try a feeding tube. We figured that would get him some additional nutrition as well as take the pressure off of him to eat when he wasn't feeling good. The hope was that by boosting his nutrition it will boost his energy.  They admitted him to the hospital to start the feeding tube feedings slowly and build them up a bit and see if that seemed to help him overall.

Friday Oct. 21st Nick had a scheduled eye appointment at Moran again. This time his sight was significantly worse and the fungus had progressed. It was determined by his doctor surgery needed to be done that day. It was scheduled for 5 that afternoon. The surgery was an hour long and they removed some fluid and injected a couple of anti fungal medications as well as some antibiotics. The hope is that the fluid they removed will yield some information on the fungus species so it can better be treated. The shots they gave should help treat the fungus in the eye as well and improve the vision issue. We are hopeful this will work as now we are extremely concerned about the long term affects on his vision.

Saturday it was determined another CT scan to check the fungus in his spleen and liver was needed. Their appeared to be more fungus spots but that could have been from the inflammation from the white cells attacking them as well. The weekend was spent with doctors going back and forth about if they could biopsy some the of fungus. The Liver would provide a good chance but the couple of pieces in there are apparently quite small and thus hard to obtain in a biopsy. The spleen would be more of a major surgery and given his Leukemia diagnoses not realistic in regards to the  risk vs. yield. They also changed the fungus medicine in hopes of seeing an improvement in the infection.

All  morning  today we all waited to see what the radiologist who would do the biopsy thought of it. He recommended an ultrasound to view the size of the fungus in both the liver and the spleen and it was decided not to do the biopsy. Unfortunately while we were waiting for the final decision on this we ended up having to miss our lumbar puncture time so that got rescheduled for tomorrow. The plan is for Nick to come home tomorrow. We are glad to be getting him back home, it can be extra frustrating being at the hospital. Nicks energy is definitely up since the feeding tube got placed and we are hoping he will continue to get stronger. We are praying the fungus issue gets figured out. We are hopeful the samples from his eye will yield some answers to help the doctors better treat it. We hold on to hope every day and one of these days this is going to turn for the better. We have to believe that for Nick. We are so proud of him and can't believe everything he has been through. We doubt ourselves everyday and every decision we have to make for him.  We hope and pray we are doing our best for him.

Thanks to all of you that have let me vent to you. It is sometimes a great load lightener to let it out. We are so appreciative of everyones love and support and so very grateful for all the prayers for Nick and our family.

Knocked Down and Lifted Up

WOW! It has been a rough week, full of every emotion in the book. Truly knocked down and picked up over and over again. I was given a book from a good friend titled "Love life and See the Good Days" by Emily Freeman and it is amazing. I have been trying to read it a little everyday and follow some of the advice. The first point is "To see a good day, change your perspective". It has been hard on some days to "See the Good" but I continue to work on it and pray to Heavenly Father for help in doing so. I am appreciative to all my friends and family that help me!

I started this blog to keep all our friends and love ones updated on Nicks progress but it is also for ourselves, to see how far we have come and to see the trials we have fought and learned from. I apologize in advance for the depth of detail sections of this may cover.

Nick had a lumbar punture and bone marrow aspirate last Wednesday to end his first phase of treatment (induction). Everything went fairly smooth at the hospital which was great but then due to a freeway accident and closure it took us over 2 hours to get home. Made for a fairly long day for sure, but we got home safely and all was good.

Thursday morning Nick woke up fairly early in a significant amount of pain. The meds we have at home were not touching it and Nick asked to go to the hospital. We called up and the clinic had us come there. We spent the day in an exam room in clinic hoping control the pain and maybe see if there was something being missed. He was sent for an X-ray and later another CT Scan but no real resolve to the pain. The pain was likely just from going off his meds from phase one and his body adjusting but it was very difficult to watch him be so uncomfortable and miserable. By early evening they decided to admit him and we were in a room by about 6:00 pm.

Friday started off well. Nick was feeling a bit better, the pain was getting more manageable and was being treated with med options we had available at home. That morning we found out that Nick's Bone Marrow aspirate test indicated the marrow was not as Leukemia free as was hoped for. It was a bit of a blow as we were expecting the best. Per his doctor he is basically in remission just not MRD (Minimal Residual Disease) remission. They will retest the marrow at the end of phase two (Consolidation) and the doctor is confident he will get to MRD remission.

After leaving for the evening I received a call once I got home from Bryan with another blow. They found out that Nick had a blood clot near his PICC line and it would need to be pulled. He was also going to need to start on a blood thinning shots that are given to him in his stomach 2 times a day for the next 3-6 weeks. It was some pretty hard news for Nick and he was very upset. I talked to him on the phone and decided I needed to head back up to the hospital. I got back there around 10 pm and both Bryan and I ended up staying the night. Huge thanks to my parents for driving to my house that night to be with our other 2 kids. They are awesome!

Saturday was frustrating simply for the fact we were told in the morning the PICC line could come out whenever it worked for us, which was great as Bryan needed to leave for a few hours. We had told them we would plan on doing it in the evening after Nick's dad got back but around 4 they came in and indicated it needed to be done ASAP. I was upset that the timeline had changed but Nick and I decided we could do this. Nick was a trooper and it went really well. The dressing for his PICC line was the most painful part and he already does that every week. The actual removal of the line was about 2 seconds and no pain. They had drawn his blood about 5 times that day so I was very grateful we kept the PICC line in as long as we did.

Saturday included a lot of being "Lifted Up". A very special family we have the pleasure of knowing held a 3 V 3 Memorial Soccer Tournament for their son Ethan who died of Leukemia 2 years ago. The Van Leuven family reached out to me days after Nick's diagnosis to ask if they could include our
family in their tournament. They wanted to collect donations for Primary Children's as well as our family.With some persuasion from Jennifer Van Leuven (Ethan's mom) I agreed to it.

The Van Leuven family has been a part of our soccer family for the last 2 years. Their son plays on the soccer team Bryan coaches and Alex is a part of. They joined our team the summer before their son Ethan passed. Ethan's viewing was on Halloween that year and we were able to assemble almost our entire team to attend the viewing together and show our support to the family and the boys teammate. It was one of the most emotional experiences I can remember. Those 14 year old boys all meeting to go support a teammate on Halloween evening. It still brings tears to my eyes to think of it. It was amazing.

Bryan went to the Soccer Tournament/ Fundraiser and was overwhelmed at the outpouring of love and support. There were many of Nick's old teammates from the years he played for Ruff Ryders and then I think almost all of his new team, Razzia Rage was there. Many of the young men from Bryan's team also came. It meant a great deal to our family to know that so many people care about us. Bryan came back to the hospital and shared what an emotional experience it was and how loved Nick and our family is. It was a wonderful reminder we are not alone and comforting to know so many people are rooting for Nick and praying for our entire family.

Bryan and Jennifer

Nick also finally got to enjoy Pet Therapy at the hospital both late Saturday afternoon and Sunday morning. He has requested it every time he has been in the hospital but they never got around to him. Then this last visit we mentioned it in passing to the nurse that we always requested it but never was fortunate enough to get it and not 30 minutes later in comes a dog. Nick had been quite down those few days and it was so wonderful seeing the huge smile that came across his face with those dogs. It was the best therapy ever!!!

Nick and Juniper

Sunday, Nick got to come back home. We are grateful for our ward and their fast for Nick and our family that day.

These kids are AMAZING!!

July 2016

I am so proud of my kids this week. They all deserve some kudos, they have been all going through more than they should have to, but I know they are being blessed.

Nick has been doing well. He has been busy unfortunately with doctors appointments. Due to the fungus infection they found in his spleen he had the pleasure of going to the eye doctor 3 times in the last week in addition to his day at clinic for Chemo. The eye doctors did find fungus in his left eye that is able to be treated with the IV meds he is currently receiving. He will get to go to the eye doctor, most likely, weekly to keep an eye on it. Nick is not thrilled about that! We are trying to see the bright side and at least it isn't in both eyes and the two spots in the left eye are fairly small. His chemo last Wednesday was his 4th and last chemo in the first stage of his treatment. Tomorrow he has to go in for two procedures: a lumbar puncture and a bone marrow aspirate. These will help determine the next stage of treatment as well as determine if the treatment is working the way doctors planned.

In Nick's little bit of spare time he finished his Millennium Falcon that was a gift from some neighborhood friends, started his home hospital schooling and had a fantastic time with a visit from his Aunt Debera (Bryan's oldest sister who lives in Arizona). It was great having Aunt Debera here, she lifted everyones spirits and was a great help. We love her!!

Alex has been busy with soccer and work. The weekend that Nick got sick Alex attended a Soccer Referring Clinic for Utah Youth Soccer. He has been working 2-3 games a week and seems to be really liking it. I had the pleasure of going and watching him play last week at my alma mater -Highland High School. That was fun! Alex played awesome... I love watching him play soccer. He plays midfield and is great at it. He is a smart player and reads the field well.
Alex has been a great helper at home and has graciously taken Kate to gymnastics for me a time or two. He is keeping up great grades and I think he is one awesome young man. I am so proud to be his mom!

Kate, well where do you begin. Any of you that personally know my Kate, happen to know she has a spunky and confident attitude. I often joke that Heavenly Father crammed about all the personality he could manage into the little bitty girl. Kate has been having a hard time with Nick being sick... she cries when Nick is sad or in pain and it is heartbreaking! She has had the pleasure of speaking to the Feelings Lady at her school on a weekly basis and it has really helped her deal with everything, she loves going to see the Feelings Lady and says she always feels better afterwards.
Kate is also working very hard at her gymnastics. She just moved up to Level 5 last week and she is so EXCITED!!! I am so proud of her for working so hard and for knowing what she wants and giving it her all. She inspires me to be a better person!

All in all the last about 10 days have been good, we are getting into a little bit of a routine at home and the kids are adjusting to what is now our new normal (as normal as we can be given the circumstances). I am so proud of all of them. Nick is teaching me to be brave, Alex is teaching me to be strong and Kate is teaching me to be fearless. I love them all for the lessons they teach me and the love they give me. They are my sunshine and I thank Heavenly Father every day for the gift of being their mother!

To all of you that have brought meals, treats, gifts or prayed for us- Thank you so much! I can not express enough the gratitude I have for all of you! It has been a very humbling experience to receive such an outpouring of love from so many wonderful people.

Moving Along!

Nick got to come home today!! YAY!

It was a big weekend. Nicklas was losing a lot of hair the last couple days.. shedding all over himself. You couldn't really tell by looking at him but it was not pleasant for him having hair everywhere so he decided to shave it all off. Last night his nurse shaved his head for him. He isn't keen on me posting a picture of him so you will all have to wait to see his handsome self with no hair at a later date!

He is really happy to be home and we are so happy to all be together. Thanks again for your love and support!

Hospital Again!

Nick has been in the hospital since last Sunday. He ran a fever pretty constantly every evening and morning Monday through Thursday with nothing showing up on the blood cultures or virus checks. He gets pretty miserable when he runs a fever so it is good he is here in the hospital where they can make him so much more comfortable.
The doctors decided to do a CT scan Thursday night and found out he has a fungal infection on his spleen. The good news is they can treat it! He went all day Friday without a fever and we are hoping it will stay at bay. They are hopeful he may be able to go home in a few more days!

Acute Lymphoblastic Leukemia

Nick was diagnosed with Acute Lymphoblastic Leukemia on Tuesday September 6th, 2016. As you can imagine we are still digesting all the information involving both the cancer itself as well as the treatment. In the last 2 weeks we have all learned what Leukemia is, as well how it had been affecting him. "Childhood acute lymphoblastic leukemia (ALL) is a type of cancer in which the bone marrow makes too many immature lymphocytes (a type of white blood cells)."

Nick had been having issues with fatigue beginning in July and began experiencing dizziness and lightheadedness at soccer practice in early August. We had been to a range of doctors to have him checked out but they don't routinely do blood work on kids unless other things warrant it. The pediatrician had checked his iron and that is what raised the red flag on the day he was diagnosed. They had checked his iron 2 weeks previously at an appointment with the pediatrician. It was a bit low and the pediatrician asked him to eat a little more red meat as well as spinach. He went back to the pediatrician the Tuesday morning he was diagnosed due to a high fever. He started getting sick Saturday night and we thought it was a flu bug that his soccer team had been passing around. By Tuesday morning he had been running a fever off and on as high as 104'. The Nurse Practitioner tested him for strep and it came back positive but was concerned by how pale he looked and decided to test his iron again. His iron was almost half of what it was 2 weeks prior so he was sent to Primary Children's Hospital for full blood work. The blood work showed all his blood counts were really low and he was immediately admitted to Primary Children's!

On Wednesday Sept. 7th he went to the Operating Room for a Picc Line for his treatments and blood draws, a Lumbar Puncture as well as a Bone Marrow Aspirate. Good news was that there was no Leukemia cells in his spinal fluid. He had his first chemo that evening.

Friday Sept. 9th was Nick's 13th Birthday. Primary Children's knows how to make you feel better on your birthday - He had an awesome nurse (Racheal) who made an awesome Happy Birthday Nick banner with the coolest soccer players on it - Rinaldo, Beckerman, Beckham and Messi!! It was awesome and we loved the little arms. They provided laughs the whole weekend.

Fun birthday banner from his nurse!

The nursing staff came in and sang "Happy Birthday" and showered him with gifts- the favorite of which I believe was his U of U quilt that both myself and Alex are a bit jealous about! He had many visitors that day and he was feeling good as well! It was a good day. He did get an iPad Pro 9.7 inch so that was a pretty sweet birthday!

Him and Kate enjoying the iPad!

The weekend in the hospital was pretty quiet which was nice, but Nick was itching to get out. He was released on Wednesday Sept. 14th after another Lumbar puncture and his weekly chemo treatment. We were so glad to get him home and he was glad to leave the hospital.

Our sweet neighbor hung up this banner for us and we all loved it. Nick also had some very sweet friends bring over a welcome home poster. This kiddo has a lot of people who love him and are cheering him on.

Nick had a couple really good days at home hanging with his momma! We watched a movie or two and he built some Legos. It was wonderful! Saturday night he started getting sores in his mouth from the chemo. He had a rough night trying to sleep and Sunday morning he still wasn't feeling good. He wasn't drinking enough because of some sores in his mouth and began to get dehydrated. Spent the morning trying to keep him comfortable, trying to get him to drink and making sure he didn't have a temperature. About 4:00 he had started a temperature of about 101'. Due to his inability to fight infections or viruses of any fever requires him to go back to the hospital.

Sunday September 18th Nick was re-admitted to the hospital. The sores in his mouth are caused by Mucositis: "a painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer". At the hospital they can give him more meds to make him more comfortable and give him liquids when needed. That leaves us at today Monday, Sept. 19th.... Nick is still at the hospital, his fever is doing better but is still there. Doctors say that lots of kids can develop fevers just from the chemo itself and the bodies reaction to it. They have not found any other reason for the fever such as a virus or a infection so that is promising. 

We are so appreciative of all our family and friends that have shown us so much love an support. Nick is a fighter and will get through this. We are grateful for all the prayers on our families behalf!