Our Superhero

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

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

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

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

Love these cute girls!

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

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

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

The Curse of the Fungal Infection

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

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

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

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

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

Rollercoaster Ride

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

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

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

Arizona Cheerleaders and Mascot

Family Fun at Top Golf

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

We seriously wanted this Border Collie!

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

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

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

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