Chemo

Well, we've moved past the 1st round of chemo and we're on to the 2nd. The 1st round was both awful and not so bad all at the same time. I am constantly being reminded that we must take this journey one day at a time and sometimes one moment at a time. Cherish the good ones and get through the bad. Planning ahead is the enemy, because you'll usually be disappointed. I'm learning, but it's still pretty hard...I like to plan.

The first round of chemo was given in the hospital because the drugs Nate has to get are pretty harsh and they have to monitor him to make sure he handles them ok. He had a central line surgically placed in his chest when he was hospitalized the first time. It is a single tube that comes out if the center if his chest and splits in to 2 tubes. The hole in his chest has to be covered with a dressing that has to be changed once a week and the tubes have to be flushed daily. It's a little bit if a pain because he can't swim and has to bathe very carefully and because of the maintenance and annoyance it causes. Really though, it is a blessing because it means that he doesn't have to be poked very often. They are able to deliver his chemo and other meds through this line and also draw blood.

He handled the first round of chemo like a champ. We spent the days in the hospital playing in the playroom, eating meals in front of the TV and having lots of visitors. The hardest part of being in the hospital is juggling all 3 kids and our jobs. We are only able to do any of this with the love and help of our family and friends. My mom, Linde, MaryLou, David and Liz have taken a huge burden from us in many ways but mostly by helping to care for Wes, Nate and Ellie. As well as our other friends, family and sometimes strangers who have taken the time to cook us a meal, send a gift, write a note, give a hug and say a prayer. We will only be able to begin repaying everyone one day by, of course, being there whenever you need us but also by extending the same hand to families in need, in the future. We really can never thank you all enough.

The first round of chemo caused Nate a lot of nausea and vomiting, which started a few hours after the end of the first infusion and continued for 9 days (4 days after the end of chemo). In between the vomiting Nate was his normal, happy, playful self. Really, I think, it was hardest on the rest of us. He started getting skinny. He had lost enough weight that his ribs and backbone were protruding. We tried everything we could to get the antinausea medication down him without it making him gag and throw up. Not to mention the fact that we had completely abandoned "mouth care" (which is the mouth ritual we are supposed to do with him three times a day to prevent and teat mouth sores) because he would throw up the second we even got close to him with
the mouth wash. Eventually, we decided to stop giving him the antinausea medication at all because we thought it would be better for him to throw up 1 time a day with no medicine than to throw up 3 times a day because we were gagging him with the medicine. I don't know if it was a coincidence, but it worked! The first day of no medicine and he didn't throw up at all! We felt like we were finally at the top of a tall, frustrating hill.

Then, the next day, I was getting Nate dressed to go to clinic and get his blood checked when I felt a fever. My fear was confirmed at the clinic. After only being home for 4 days (and vomiting for 3 of those), Nate had to check back in to the hospital for IV antibiotics because his immune system was zero and he had a fever (we also learned that this is something that will probably happen with every round of chemo). The fever only took one day to disappear and all his cultures came back negative. Now we had to wait...and wait for his ANC (measure of immune system) to get above 250. He was totally fine, but it was too dangerous to take him off of IV antibiotics and take him home...just in case. So, Nate spent 6 long days in isolation in his room. He could have visitors as long as they were well, but he couldn't even wander the halls or go to the playroom (his favorite thing to do).

While in the hospital, he started to lose his hair. This was way harder on me than I thought it would be. While I loved his sweet, red hair that EVERYBODY complimented, I don't consider myself a vain person at all and didn't think it would bother me too much when it fell out. I think it was the quickness that really took me by surprise. That and the fact that he went from a completely healthy little boy to now a boy who "looked" sick, and only because we were giving him poison. It went from a couple hairs on his pillow to only a few wisps left in 2 DAYS!! I guess I thought it would take weeks and we would have time to plan a shaving party at our leisure. Instead, I planned an impromptu shaving party at the hospital. Wes helped me find a few fun hats and we picked up a Thomas cupcake cake at the store. Wes even came up with the idea to play "pin the hat on Caillou". Daddy, Adam and Wes shaved their heads first so that Nate wouldn't be scared of us shaving his last few wispy hairs. It was a fun night that I think lifted all of our spirits a bit.

That previous morning, Nate's ANC had gone from 0 to 70 and the Dr said it would
take another 2 to 3 days for it to get above 250. Then, sure enough the next morning it jumped all the way to 255 and Nate could go home!!! We were all SO excited! There's no place like home! Once home, I realized that out of the last month, we had only been together at home for 1 week! No wonder we missed home so much.

We enjoyed being at home, fattening Nate up with his favorite foods and playing, playing, playing. Two days later (last Friday) we headed to clinic for a blood test and found out that Nate's ANC was 11,000!! I looked at the nurse and excitedly asked, "can we do fun things this weekend?". "Yes", she said, "have fun". Nate had not been anywhere other than the hospital or home for 3 weeks. He had been asking to go to the children's museum, so that's where we headed Saturday morning. We had a SUPER fun weekend which means that none of us have clean clothes this week because we didn't do any laundry, but the laundry can wait, Nate's immune system will not. I refuse to waste these moments with my family, doing laundry.

Yesterday, Nate started chemo round 2, outpatient this time. He is getting the same exact drugs this round that he did the 1st round and since he did pretty well, he's allowed to do it outpatient. This is awesome!! We have to spend 6 to 8 hours in the clinic Monday through Friday this week, but we get to go home and eat dinner together and sleep in out beds and I can even go run some errands after the kids go to sleep. This all seems like such a luxury now. We won't be able to do outpatient for rounds 3 or 4 but possibly we could do it again for 5 and/or 6. Nate's doing really well. We play and play and play at the clinic all day, while the medicine is infused. He hasn't really thrown up yet...just a little tiny bit this morning when we tried to give him his antifungal medicine. So, we aren't going to give him any antinausea medicine by mouth at home (he gets some IV at the clinic) and see how he does. So far, so good!

The only reason I have time to write this right now is because he conked out for a little nap. Otherwise, he is still his lively 2 year old, red headed temper (even without the hair) self and he's keeping everyone on our toes. Oh yeah...he ate like a hog this weekend and put back on all his weight! He really is incredible! I was changing his diaper and marveling at the fact that he had put some meat back on his bones in the matter of only a couple days. I looked at him and said, "Nate, you're amazing". He said, "yes, I'm are...I'm super Nate."