Thursday, December 8, 2011

Round 7

Tuesday, December 6, 2011

So we didn't quite get through round 6 without the dreaded fever, but at least it was a quick one. All 3 of the other kids were sick at home with runny noses and coughs, so I feared that when Drew's counts dropped that he may spike a fever and sure enough at 11pm on Saturday night (November 19, 2011) it hit. The 11 o' clock fever means that we pull an all nighter in the ER before ending up checked in upstairs at 4am. The fever only lasted 12 hours and only got as high as 102.5 and he was feeling pretty good through it all. After negative blood cultures and 24 hours fever free, we were able to head out after only a 48 hour stay!

We were able to enjoy a wonderful Thanksgiving and everyone was back in good health and Drew was feeling pretty good.

We were scheduled to start Round 7 (week 19 of 53) the Monday after Thanksgiving (November 28, 2011). The day started off with an early morning trip downtown for his next scheduled MRI (6 wks post radiation) and a CT to recheck his lungs from the pneumonia and a lumbar puncture for chemo in his spinal fluid. The MRI looked good and the CT showed improvement in his lungs. Once he was up from anesthesia, he received another dose of a different chemo IV. As if this wasn't enough for the day, he was also supposed to start an oral chemo that he would take for 5 days straight.

Drew has not taken any oral meds since his first round of chemo. It had been a complete nightmare trying to get meds in him because he would refuse to take them (because he already felt like junk) and then after an extraordinary amount of emotionally exhausting coaxing he would agree and then just vomit it up. If we tried to force them down he would also throw up. So nothing was getting down anyway and we were all spent. We have since been doing all of his meds IV which still isn't easy because his line has to be flushed with each medication and he can taste the flush, so he still hates having the meds and still throws up at times while doing them, but at least we know they are getting in him this way.

So when I saw that there was oral chemo listed in the protocol, I was a little (or a lot) concerned about how we were going to get these meds in him, so I started doing some research and planning for these next 2 rounds. I found out that the chemo does now come in an IV formulation which is fairly new and rather expensive. They wanted to make sure our insurance covered the IV form before they would even consider it, but we found out that it did. Then the next issue was that if he could take it orally we could be home all week, but if he couldn't then we would have to head back to the hospital everyday to get it IV. So we tried to see if he would take it. Again after a ton of coaxing (and I mean hours), he tried. It was a capsule that was opened and the powder mixed in apple juice. He tried really hard to get it down because he knew the next option was to place a nasogastric tube and tube it in. After a big sip to try and just get it done, he puked. Next up was the NG tube, which was just awful. I held him on my lap in a bear hug as 2 nurses worked to get this tube up his nose and down his throat. He was gagging and thrashing and kicking and biting and finally projectile vomiting all over them. They finally gave up, but this still meant he had been through all this and still hadn't had his dose for the day. They had the pharmacy order and overnight the IV form and we went home to return for the next 5 days for it IV.

Tuesday he woke up with severe abdominal pain and complaining of a headache, but it seemed to subside as the day went on. We didn't have to go back to the hospital until later in the afternoon, so Brooke was able to come with for the trip. Having her along really kept his spirits up even though he was feeling pretty down.

Our appointment for Wednesday was a little bit earlier in the day, so we got up and ready and Drew and I headed out. About 20 minutes into our trip downtown in traffic on 290, he started puking. We got off as soon as I could and got cleaned up. Before we even made it back to the highway, he was puking again. This was the first time that this had happened where we were alone in the car with me driving and him puking.

He had done so well with the last 2 rounds with minimal puking and we had never done this back and forth outpatient stuff, so I was completely caught off guard and felt so unprepared. Had I had any idea that he would be so sick, I would have never gone alone. It was awful. He couldn't get comfortable strapped in his seat and was just moaning and cringing as if in pain and complaining that his head and tummy hurt. He threw up a total of 4 times on our ride and finally we just had to keep going, so that we could get there and get him feeling better.

We got to the hospital and he was able to lay down and they gave him some extra fluids and he was doing better, so after his chemo we came home. I had already called Randy on the way down to have him take the next 2 days off b/c there was no way we could make this trip alone again.

Thursday's trip was even worse, but at least this time we had help. Drew threw up the whole ride basically nonstop. It started before we even left the driveway and didn't stop until we were at the hospital and he was now throwing up blood. We ended up staying for the next 3 days to finish this round, so what was supposed to be and "easier" round with some oral chemo at home, turned into an inpatient stay (our 13th inpatient stay in 5 1/2 months to be exact) . He did do better just being at the hospital though without the back and forth. We came home Saturday (December 3, 2011) and now get back to work at getting strong again. Today his appetite was a little better and he was more active than he has been lately. We are already on week 20 of 53 and he actually gets a whole extra week off this round and next, so instead of starting after 3 weeks, he will start again after 4 which will be the day after Christmas.

The chemo that he received this round isn't supposed to be quite as hard on his counts. This weekend Drew (and all his siblings) are invited to go on a special Polar Express train ride and then a trip to the North Pole to meet Santa at his workshop! So again we are praying that his white count won't completely bottom out and that he won't get a fever or any other complications. Hopefully, all will be well and we can enjoy this special time of year as we remember the birth of our Savior and all that He has suffered and done for us and how He guides and comforts us each and every day.

Thanksgiving Day! It's a rare event these days that we actually all get to go somewhere together, so here's a shot of all the kids in the car at once.

The day after Thanksgiving was a pretty nice warm day. Drew had been wanting to go see the tanks at Cantigny, so we packed some snacks and loaded everyone up in the car. Before we left the driveway though, my mom called and said that she had just passed Cantigny and it was closed! Big, sad tears fell and Drew was very upset. Luckily, Randy remembered that there was a VFW a couple towns over that had a big tank outside of it, so we went there instead and it did the trick - they loved it!

We had fun putting up the Christmas tree.
All 4 kids in the picture and looking at the camera! And yes that is a candy cane that Drew is turning into a "shoot gun".

Last of the eyelashes.
We have talked in the past about his eyelashes and eyebrows and as they started to thin, we would count how many were left. They had been thinning, but weren't really almost gone until after round 5. He had been hanging on to 2 eyelashes on each eye for awhile and the other day one of the two on his right eye fell out and was on his cheek. I showed him and he told me to, "count them now mom," and then told me to take a picture. If you look close you can see the remaining one on his right eye and the two on his left.

And little Kelsey, just 5 1/2 months old, has started to crawl!