Not a Fun Day

Andrew had been surprising me for how well he's been doing, but I think our luck has run out. Andrew started feeling crummy yesterday, but his pain was still manageable then with the normal tylenol and oxycodone. Today his pain has escalated a decent amount, so we decided to give morphine a try, even though Stew's side has a bad family history with it. He's responded well to it, and is now sleeping peacefully. It's made his oxygen dip, so we're back on the pulseox and the oxygen, but what a wonderful blessing to have pain medications so readily available to us.

I think the repeated stress and lack of sleep took its toll and I started to feel pretty overwhelmed with a cold on Monday. Andrew was really energetic and peppy on Monday and Tuesday, so I had a rough time keeping up with him. My mother-in-law graciously enough flew out from Indiana to come stay with him, so she has spelled me for the last two nights and has been a most wonderful gopher for us. We're so grateful she's dropped everything to come help us out.

Andrew took a long time to bottom out. He finally hit zero today, more than a week and a half since chemo began. I've noticed he's always clingy and fussy when his ANC is low--I think there's definitely a general malaise that sets in when you don't have neutrophils.

It's been a really, really hard day. So grateful to know there is a Plan of Salvation. I'll post more on Andrew soon to keep updated. I'm sorry I've been such a lousy updater, Mom.

Some pictures:

Time at home with daddy

In for round 4, and Andrew's giving us a run for our money. We were just wiped.

Andrew's line broke the first night back, and saline and blood just got everywhere

More and more and more chemo

Somehow, Andrew was so happy even a week after chemo started

Pretty sick today

Amazingly Well

Andrew is doing so well! I'm seriously floored at how well he's tolerated chemo this round. His ANC is 1000 as of yesterday--after 5 days of chemo! I know it takes a bit to go down, but it always seems like he zeroes out pretty fast. Other than crabbiness at night and waking more than usual, the last 24 hours have been just about normal for him.

For being a children's hospital, Primary's is not even close to childproof. However, I've found a way to barricade him in the more childproof half of the room so that the only thing I have to worry about is an outlet. He's been so chatty and peppy--he started waving "bye bye" consistently as of yesterday, and I think he correctly identified who dada is today for the first time. He's had momma down for quite some time :).

I'm almost done with the Emperor of All Maladies, which is quite the book to read while you're in the hospital. For being a doctor, and especially an oncologist, he gets really emotional in the book sometimes. Actually, a lot of the time. It does a great job of talking about the history of cancer and chemotherapy research. It's a fun read, and he's brave for revealing some of what he's really thinking when he says certain things to patients. Like that the sympathy is truly there, but the diagnosis speech is often rehearsed. It's a very well-researched book, and I'm not surprised it took him 6 years to write it.

I'm learning a little bit more about life after chemo, and I guess I'm surprised that I haven't read more than I actually have. I knew I had to deal with the possibility of heart damage with the use of anthracyclines (like daunorubicin and mitoxantrone), but I didn't realize that the possibility of damage was as high as it is. I hope and pray that these drugs that they've used for the decades will soon phase out and the FDA gets its act together and starts approving drugs that will work without such nasty side effects.

We have some friends in here who recently declined to go through with their bone marrow transplant, so they're on track with us, now. It was against the advice of the bone marrow team, and it's made me seriously re-think about just how much trust I put in my oncologists. Do I really trust the decisions they make? Do I believe them when they say it's the best way to achieve the greatest likelihood of a cure and an acceptable quality of life? Do I really think they have his best interests at heart? These are a lot of questions I had, especially at the beginning, but it really reminds me how much implicit trust I've put in them. That it's not just a nice thing to trust them a lot, but that I need to trust them completely. More importantly, though, I need to trust God completely, knowing that even if oncologists don't know everything and can sometimes mess up that he knows exactly what He's doing and what Andrew needs. I'm so glad that I've been able to feel peace about Andrew's diagnosis as well as his prognosis. Sometimes I wonder just what I've learned so far, and wonder why I'm not a better person because of it. I think, though, that it'll take years for me to process.

Anyway, I'll post some pictures soon. I've taken a lot of them--just haven't brought the camera cord :)

Voilà chemo symptoms

Andrew has been doing great lately, I really wondered if this round would be an easier one for him (even though we haven't gotten the mitoxantrone yet), but I think it's just started to affect him. He's been sleeping a lot (mostly on his own), so that's made things a bit easier for me, but I really would rather have him be peppy and exhausting for me than just sleepy... The reason he's exhausting in the hospital is just that I have to constantly fish his lines away from his mouth and his hands, and he's a pretty rolly polly climber man most of the time. Anyway, he's sworn off most solids as of today and is a little crabbier. Overall, we're doing great, though.

We had such a warm welcome coming back. We know all the staff really well by now, and it was almost like coming home... I have a talkative nurse today, which is always a lot of fun for me because the lack of social interaction in the hospital can be a little wearing sometimes. It's fun to hear the perspectives of people who are in the trenches of health care, what they think of decisions from doctors and patients, and what they've noticed people do when put in tough situations. My nurse today has worked here for 10 years, and has done both adult and pediatric oncology. She says that it's so interesting that in peds the parents are so much more willing to do clinical trials than the adults are. I wonder if it's because parents are so much more hopeful their children will recover? I don't know.

I'm really loving the view from my room and the book that I've been reading about the history of cancer. We're still rooting for Kim and Aubree who have been so sick and pray that they'll be more comfortable and recover. We just love the people we've met up here, and are so grateful they've been willing to share their thoughts and experiences and just be our friends.

Round 4: A very wiggly baby

We were admitted today for round 4. I've heard from just about everyone that this round is the hardest, so I've been preparing myself mentally for the challenge, although I don't think it's done much. Days 1-4 are a higher dose of ARA-C (Cytarabine), which Andrew has had before along with a new drug, Mitoxantrone (on days 3-6). Mitoxantrone is an anthracycline that I'm not totally excited about--it's bright blue and makes their urine turn blue or green (depending). I've also heard their tears can be a tinge blue as well.

Andrew's been SO wiggly. So very, very wiggly. The first few days are always pretty exhausting for me trying to make sure Andrew doesn't get completely lost in his lines, but mostly, that he doesn't chew on them. It is oh so tempting for a kid his age. I guess he wiggled around a little too much because his line just broke, so IV team is coordinating to come fix it any minute now. I'm glad I noticed his bandage looked a bit darker, because the saline and the backed-up blood had been soaking through his bandage onto his top, and if they hadn't noticed, they might not have been able to repair it by 1:30AM, which is the deadline that they need to make because he gets his ARA-C at 5:30AM (the glue needs 4 hours to dry). Worst case scenario they wouldn't have noticed at all and 60 mLs of ARA-C would get all over him.

Anyway, best be off to help the nurses--but thanks so much for the encouragement, everyone. I really was feeling so much support yesterday. Just hearing from people really does lift me up, so thanks.

LP, Aspirate, IT, ECHO

There were a lot of procedures today for our little munchkin. He's been pretty cranky today with no food and no nap, but now he's sleeping peacefully. We got a PA to do his procedures for us who came highly recommended (some doctors/PAs/NPs have better aim than others). For such a little guy, I wanted it done right the first time so he could just recover, and we could maximize our last few days at home. Something I learned from a mother who used to be here--as gracious as you want to be in letting people touch your child, it really should always be 'the child first and always.' We asked if we could be put in tomorrow to start round 4--but they're pretty booked upstairs--so for sure we'll be in this next Monday. I'm just now starting to get anxious to go back in.

It's so weird wanting to go back in for another round. I think of it almost literally as a boxing match where I get put in the ring for a fight, but I'm not allowed to punch back. I just have to endure it until it's over, then they take me out for a little break, and I get put back in for another round. It'll be nice when we can go home for good and be done with inpatient stays. We'll have to go to clinic for a long time after that--first every week, then every other week, then every month and so on until they call him "cured." It will also be nice when we can stop asking everyone that comes within 3 feet of Andrew their recent medical histories.

(one of my favorites pics of Stew and Andrew between rounds 2 & 3)

Scheduling Issues

I just got a call today from oncology saying that Andrew's ANC is now 1400. They seemed surprised he zigzagged upwards, but it seems pretty normal considering he's done it before. They usually like to get an aspirate at a bit above 500 and then admit around 1000, so we'll be a bit late getting in this time, but that's okay. He's getting an aspirate, LP (lumbar puncture), IT (intrathecal) chemo, and an ECHO tomorrow. The plan is to go back on Monday, but we'll see if we can't wink and get them to get us in earlier.

More time at Home

So as of Wednesday, Andrew has an ANC (absolute neutrophil count) of 400. On Monday, it was 600, so they had scheduled an aspirate and LP (lumbar puncture) for Thursday, but since his neutrophils took a dip, they're postponing it for a week. This means another week and a half at home! Yaay! It's so funny that for the last 2 rounds I've been itching to get back in the hospital and get her done, but for some reason this time I'm in denial of having to go live at Primary's for another month. This next round (also called Intensification 2, or round 4) is considered to be the hardest round with an average stay of 35 days. Yuck.

I have just been loving my time at home. I've been spoiled because round 3 was only 17 days long for us--we really just squeaked out of there with an ANC of zero and just a couple of neutrophils. One day when Andrew just had 1 neutrophil, they said, "Yeah, he had one neutrophil, and we took it," but I guess he passed their test of being able to go home. The doctor who let us go was one of the more liberal ones, and I know they were hurting for beds, but hey, I'm not complaining :). Even though we're still antisocial and we can't quite go outside all the time just yet, I have almost forgotten that Andrew had cancer.

Last night I was able to go to a cancer mom's dinner with 16 other ladies whose children are in treatment or who recently completed treatment for cancer. With the exception of 2 people, all of them had kids with ALL (also known as "the good leukemia"), and most of their kids are around 3 or 4 years old. I learned so much about the disease--it really is a whole different basket when it comes to treatment. Totally different protocol with different chemos, different precautions, different medications... Although the remission rate and overall cure rate is much higher for ALL than AML, they really have it tough having to go to clinic over a 3-year period. I was pretty overwhelmed with all of the collective wisdom in the room, and I really felt like each one of them really was my hero. I honestly can't imagine myself in any of their shoes. One of them was told 3 nights in a row that her daughter wouldn't live through the night. Geesh! Talk about stressful... Anyway, I think we should all regroup in about 5 years and rename the group "Hypochondriacs Anonymous" because it seems that when we see that anything is slightly out of the ordinary, we all tend to diagnose friends and family with leukemia.

Even though we've left the hospital, I can't help but check our other friends' blogs many times a day to see if anything has changed. We're hoping and praying Aubree will just breeze right through transplant and that Kim will finally achieve remission and be able to go to transplant.

Love you all, and thanks so much for your continued support and prayers!

We have an ANC!

Andrew's absolute neutrophil count was 200 yesterday. It always makes us breathe a little easier when he has neutrophils. Interestingly enough, he has a whoppin 980,000 platelets/uL. The usual range is 150,000-400,000. Go baby!

In other news, Andrew learned that he can crawl around the apartment. He has been crawling for almost 2 months now but has always stayed on this little patch of carpet in our living room, I think because we keep him on a similar sized gym mat in the hospital. Anyway, he likes to crawl down the hallway and look back and grin at us.... then he proceeds to get into anything that he can reach (just like a good little 9mo old should ;) ).