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!!