Round 2

Round 2 of chemo has been awesome!  Did I just actually say that?  I guess my definition of awesome has changed a bit, but it has been really great.  Nate started Round 2 on Monday, August 15th and was able to receive the medications outpatient because they were the same drugs as Round 1 and he handled those pretty well.  We went to the clinic every morning, at about 9am (after dropping off Wes and Ellie), for 5 days straight.  They would hook Nate's lines up and give him some antinausea medication, then 2 hours of fluids, 1 hour of chemo, 2 more hours of fluids, then a 1/2 hour of a different chemo med.  Then we could go home.  We would spend anywhere from 6 to 8 hours at the clinic because sometimes they had to draw blood, one day we saw the doctor first, sometimes they were busy and didn't get Nate hooked up right away, and one day we got sent on a 2 hour wild goose chase around the hospital trying to get a chest x-ray and EKG after already being at the clinic for 6 hours getting the chemo (growing pains of a new building, I hope).  We were so grateful to be able to go home at the end of the day, though.  I think it's just good for the soul to eat dinner at your kitchen table with your family, sleep in your own bed, play with your own toys and get to spend some time in the evening as a family of 5 in our own home.  All of our spirits were lighter.  It also helped that Nate was showing no signs that he had spent all day being poisoned at the clinic.  He is happy and energetic.  Nothing is keeping him down.  He would run around the clinic with me chasing him with his IV pole, hollering, "Slow down! Wait for Mommy! Don't pull on your lines!".  He would take a nap, either in the morning, after the antinausea medication made him sleepy, or in the afternoon during his normal nap time.  He would snack all day, watch DVDs and play with toys.  Thank you to Jen Laird and Bethannah for coming to hang out with us and bring me food, it made our long day a little shorter and a lot brighter!

We decided to not give Nate any antinausea medications by mouth at home (just the IV meds given at the clinic) and see how he did.  He did great!  He only threw up one time (compared to several times a day for 9 days straight).  Unfortunately, the one time he threw up was in my mom's car on the way to the clinic on Wednesday morning.  Sorry Grandma!  Grandma was nice enough to take him to clinic on Wednesday and sit with him all day while I worked my normal 12 hour shift.  I thanked her by loading his queasy belly up with milk and bacon and sending him on his way.  They made it to Lincoln and had to pull over to clean up the mess.  He had been doing so well, I didn't even think about it.  We then decided to not feed him any breakfast until we got to the clinic and he got the IV antinausea meds, which worked like a charm.  Too bad for my mom, we learned that lesson the hard way.

I want to thank all the lovely people who helped us get through that week of long clinic days.  My mom took Nate for his chemo treatment on Wednesday and picked up Wes from school the other days.  Liz and Tracy each took a couple days to take care of Ellie.  I forgot to mention in my last post that one of the people that has been taking a huge burden off of us by providing child care (besides our family) is my dear friend and our long time babysitter, Tracy.  From the moment she found out about Nate she offered her free time to watch Wes and Ellie, pick Wes up from school...whatever I needed.  Of course she said she would do this not expecting any additional pay.  She is truly an extraordinary person, sometimes I feel like I am not worthy to have these wonderful people in my life.  So, Tuesday night Ellie spiked a fever.  What was I supposed to do?  I had to work Wednesday, Chris had to work and my mom was taking Nate to the clinic.  Tracy to the rescue!  Not only did she take Ellie to the doctor, but she waited around for Ellie to pee in a bag (to check for a bladder infection).  When Ellie didn't pee, she went home to pick her son and Wes up from school (2 different schools, of course) then drove the pee back to the doctor in the afternoon!  Tracy is so awesome, I really don't know what I would do without her.  Ellie's fever stopped on it's own and a full body rash showed up the next day...a virus.  We really have to worry about Nate if Wes or Ellie gets sick, but this turned out to be no big deal, luckily.  I also want to thank the people who took time out of their busy days to bring us a meal, the Batoaoels, Mary & Dave Petroff, Papa and Lou Lou, the Thompsons and the Mobilias.  It was so nice to come home after a long day at the clinic and have a meal that we didn't have to pick up at a drive through on the way home.  Forgive me if I forgot anyone.  Every little thing every one does to make this burden lighter on us, is so greatly appreciated you will never know.

We had a nice weekend at home and returned to the clinic on Monday for blood work.  Nate had to get a blood transfusion, which is pretty normal, I just didn't know that it would take ALL DAY.  It took 3 hours to get the blood from the bank and 2 hours to infuse.  So, we didn't leave there until 5pm again.  I was pretty frustrated, because I thought I was going to have some time to catch up on housework.  Plus, I had Ellie with me because I expected a quick visit.  It was challenging to entertain both of them in the infusion room, but I made it work.  Tuesday we got to stay home, but had a scary moment when Nate had a nose bleed that wouldn't stop. Chemo wipes out his platelets which puts him at a higher risk of bleeding. Luckily, Wes had a half day at school and was home to grab things for me and call Daddy because I was holding Nate with one arm and trying to hold his nose with the other. I sort of remembered reading that I should sit him up and apply pressure to his nose for a long time...I decided on 5 minutes. He hated it and screamed and struggled the whole time, but it worked.  Wednesday, my mom took Nate in for a blood check and they were able to come home in a couple hours.  Thursday we were home.  Friday I took Nate in again for a blood check, anticipating that he may be able to begin his stem cell collection procedure after the blood check, so I left Ellie with Tracy.  I was able to pick her up after a couple hours though, because Nate's counts weren't high enough.  We are giving his body the weekend to build up his stem cell population and hope to begin collection on Monday.  We will go to the clinic first thing in the morning again and wait for the blood test results.  If they are high enough, we will check in to the hospital and Nate will be hooked up to a machine for 4 to 6 hours.  The machine will take his blood out, separate the stem cells, then put the blood back in.  We will be in the hospital until late into the evening, but will get to go home when it is done. Hopefully they will get enough stem cells with the one collection, otherwise we come back Tuesday and do it all over again.  If his numbers aren't high enough on Monday, then we go home and come back Tuesday to try again.  One day at a time.

Nate will have periodic clinic visits for blood tests, but we are hoping to get the collection over with on Monday and will be able to be mostly at home through Labor Day. After Labor Day, Nate will have a week filled with visits for a CT scan, an MIBG scan and a bone marrow biopsy. He will be put under anesthesia for these procedures, but will be able to come home at night. The bone marrow biopsy is scheduled for September 9th, then he will check in to the hospital to start chemo round 3 that evening.  Round 3 is starting a few days later than it should because of scheduling with the MIBG scan (the scan that looks specifically for neuroblastoma).  We will need lots of prayer as we hear back results of his tests.  While we expect nothing but great results, the anxiety of general anesthesia and waiting for test results is sometimes too much to handle.  We will hand it over to God.  Round 3 is also supposed to be one of the hardest of the 6 rounds of chemo, so we are bracing ourselves and remaining optimistic at the same time...if that's possible.

When Nate started Round 1 he weighed 15.8kg.  We were told that if he lost 0.8kg they would start talking about giving him a feeding tube, a nasogastric tube that goes up his nose and into his stomach.  We are trying to avoid this if at all possible because I know it will irritate him and he will probably pull it out.  After spending 9 days vomiting during Round 1, Nate had dropped one full kg down to 14.8kg.  This may not seem like a lot, but was very noticeable on his little body.  As of Friday, when he was weighed at the clinic, his weight was all the way up to 16kg!  Way to go, Super Nate!

Sometimes I still get sad and mad that this is our life now, but for the most part, it is what it is.  It is our life now, and we're doing what we have to do to get Nate through this and on to living the rest of our lives.