Andrew was diagnosed with Erythroid (M6) Acute Myeloid Leukemia on November 4th, 2010 when he was almost 5 months old. Andrew is currently in remission from his cancer, after finishing his 5 rounds of chemotherapy. He is a healthy, happy toddler.

Saturday, April 30, 2011

In and Out

We came in yesterday around noon and started his chemo at 3pm. He gets 4 doses of very high-dose cytarabine every 12 hours with a shot of L-asparaginase to top it off. Then, amazingly enough, they send us home for 5 days while his counts drop! That means we'll be back home on Sunday morning until Friday when they do the same regimen again. I was curious about the cytarabine this time because I heard there was a national shortage of it, but it turns out Primary's bought theirs ahead of time, so they won't have to ration any. (for those of you who are curious, I asked about the PEGylated version of asparaginase, and they said it varies for which protocol they use, and it's sometimes better tolerated than L-asparaginase).

I think it's been as low-key as it could possibly be in a hospital. The only thing is that Andrew's pretty wiped from being woken up every three hours for diaper changes and eye drops (they mercifully spaced the diaper changes from 2 hours to 3 hours for my sake). He gets really upset with both diaper changes and eye drops, and needs to be comforted for a while each time. As usual, his first night in the hospital is pretty scary for him, so he's been waking up an hour after I put him down each time. He's sleeping great now, though, and he's still eating like a champ.

I asked about the criteria for his central line removal, and they say as long as his counts recover and he's eating, they'll pull it. So, that means that probably 5 or 6 weeks from now, he'll have his bone marrow aspirate (he didn't have one between the last two rounds), and then he'll be a free man. Yay! They've really been concerned about his blue lumen not working, but I really don't think we'll need it. As long as his yellow one stays in tact, we won't need to re-place his broviac or get any PICCs. We're really hoping that is the case and praying it will hold on for just another couple of weeks.

I got to talk to a couple of moms here last night. One of them is a new AML diagnosis that lives just down the interstate a few miles (the same mutation as Aubree! Monosomy 7! I couldn't believe it), and the other was a lady whose son's T regulatory cells went haywire and started attacking his organs. Whoever heard of a Treg disease? I sure haven't, and apparently, no one else has, so they named the disease after him. Anyway, I love talking to other moms because I get to hear amazing stories like how one kid puts in his NG (nasogastric) tube himself (it's a tube that goes through your nose down to your stomach), or how this 6-year old wanted to go to a sleepover, so he flushed his own lines that night. Stuff like this continually amazes me.

For those of you living in Utah, you can understand why I feel like I live in a snowglobe (since it was snowing yesterday). I thought it was funny that the weatherman was saying he felt like he had cabin-fever, and I was just thinking, Oh, Mr. Weatherman, you have no idea.

We're really hoping and praying Tanner is clear of his cancer and can be ready for transplant. He's had a few setbacks, but he and his family have been so strong. Thanks, everyone, for your continued support.

Thursday, April 28, 2011

Final round starts tomorrow!!!

Andrew's neutrophil count rose to 800 today! This means that we get to start the final round of chemo tomorrow! We are soooooo excited to get in and get it done with. Hopefully we will be home for good before the end of May. Andrew should be able to spend his first birthday at home June 10th. :D

Sunday, April 24, 2011

Christ is Resurrected, Truly, Resurrected

It's been such a great Easter. I got to go to my wonderful Aunt's house in South Jordan, and Stew even hid eggs for me around the house. It's amazing how much freedom we feel like we have between rounds sometimes. It's been so fun to be home, start a garden, cook, play piano again, etc. We're excited for an easier round this next time (hopefully), where they let us go home at the beginning for a whole five days! Andrew's ANC was 300 as of last Thursday, so I expect we'll either be in late this week or early next week. I'm betting on next week, though.


I talked to my mom this morning. She's in Ukraine right now, serving a mission in the eastern part (the more Russian part) called Dnepropetrovsk. I told her Happy Easter, and she told me that in Ukraine, they say it a little differently--instead of 'Happy Easter', one person will say "Christ is Resurrected" and the other person will respond "Truly, Resurrected." I love it that they really keep the meaning of the holiday so central. I'm so grateful for the Atonement of Christ and his willingness to take upon Himself our sins and our pains. "God be thanked for the matchless gift of His divine Son!"

Thursday, April 21, 2011

Line Break!

Andrew normally gets his blood drawn on Mondays and Thursdays when we're at home, but when the home health nurse came on Monday, she pushed in saline and pulled back blood, then air. I looked at the line and saw a break at the same place it has broken twice before. Thankfully, we were only at Primary Children's for about 3 hours (I wasn't sure if they'd make us wait the full 4 hours after they repaired it until the glue dried), but our home health nurse (for nights) came and de-clotted it for us. I'm so glad the yellow lumen de-clotted (the blue lumen is completely clotted off), because I really don't want to pull his line right before he's done. I really hope it lasts us until we're done. Not a fan of PICCs.

By the way, if anyone has suggestions about health insurance for Andrew, input would be much appreciated. The calendar year for Andrew's current insurance (my COBRA) ends July 1st, we've paid through June, and it's ~$450/month. I can have it until Feb 2012. Stew and I are both on his (terrible) student insurance (catastrophic), which has a lifetime maximum of $250,000, which certainly wouldn't work for any sort of chemotherapy in case he relapses (as each round is about $100,000). Also, Medicaid is not an option for our situation.

They're coming to draw today. We're hoping for the magic number of 1000, but considering it was only 200 on Monday (and, knowing Andrew), we'll keep waiting.

Monday, April 18, 2011

Runny noses and other thoughts

Stew has been sick for a week. He's been a bit of a zombie most of the time, and I've been watching Andrew intently to see if he'll get sick. So far, he only has a very leaky runny nose. It's amazing how motherhood desensitizes you to so many things, like wiping goopy snot off of someone else's face. As of last Thursday, his ANC is still zero, but his platelets are right under the top of the normal range of 150-400,000 plts/uL. All of the bruises on his head are gone, so I guess his body knows what he needs better than I do, and having a low ANC does keep us home for now. I must admit, though, the hospital is looking more and more appealing because this time, it'll be the beginning of the end. The earlier we go in, the more of a summer we'll get. I always felt bad for the Steeles who got diagnosed at the beginning of the summer last year because by the time they got out, it was the middle of winter!

It's so nice to be able to talk about little things like what season it is when you get out of the hospital. I know that I should be thinking more about his weekly and monthly blood draws for the next little bit, and his potential relapse, but amazingly, I'm thinking about how much time away from Primary's we can get away with so we can go hiking down in Zion's. Or if I can go visit my sister in Missouri or my brother in California. Or heck, even if I can go visit my parents in Ukraine (or Indiana...added by Stew).

Things just seem to be getting easier every day. The lurch in my stomach that used to be there all the time is almost imperceptible. My fears of relapse haven't surfaced yet because I'm only thinking of the immediate future--that he's in remission and of course the cancer isn't coming back! It's getting hammered with myeloablative therapy every month! I don't know if I've mentioned it in this blog yet, but the overall relapse rate for AML is 50%, but since Andrew achieved complete remission (less than .1% or something like that) after the first round, the relapse rate drops down to 30%. We'll take it! Apparently, they've also done studies that compare 4 rounds of chemotherapy with the 5 rounds that we're doing, and they've found that there is either no difference in relapse rates, or there's a 5% decrease after completing a fifth round. Mmm, 5% could mean a lot. We'll do that one.

Andrew is really doing so well. He has been clingy lately, not just keeping me in his sight at all times, but not letting me move more than 2 inches away before he starts to bawl. It has gradually gotten better to the point that he'll finally let me put him down for a nap rather than having me hold him while he sleeps. He even let me go skiing for a while on Friday, but I did notice puffy eyes when I got back (our poor babysitter, Sr. Knott!). Last Sunday I was talking to the attending, and he said that Andrew is doing as well as one possibly could with an AML diagnosis. I really don't know why we've been given this enormous blessing, but I can only attribute it to a merciful God, who knows my weaknesses and exactly how much I can handle, which is not a lot. I'm really not that great at doing this whole leukemia thing. Andrew's really great at it, though.


I wonder if people know how much I treasure some of the little things they say. Things I'm not even sure they remember saying to me. Words of encouragement, things to ponder about. I remember my Mom telling me about a lady in Ukraine with cerebral palsy (which seems to be very common over there) who said she was flattered that God would think enough of her to give her that trial in life. What an incredible perspective. I've also thought a lot about what Elder Richards told us last Sunday at church (he spoke in the Saturday Morning Session of General Conference a few weeks ago: http://lds.org/general-conference/2011/04/the-atonement-covers-all-pain?lang=eng). He said that it is a sacred privilege to have a sick child at the hospital because now more than ever we can enjoy that closeness to Deity that only comes when this sort of crisis/trial is upon us. I guess for other contexts, calling our experiences a "privilege" would seem almost offensive, but it has been so true for us.

The last person whose words I've thought so much about recently has been another mother in the hospital. She wondered aloud whether other parents whose children are healthy know what they have. She quickly added with her characteristic gratitude that we do. That when our children are threatened with death and illness that we begin to understand just what we have, and that when they're taken from us sometimes we really do realize what we had. And still have. What an amazing (and at times, vital) assurance we have as members of the church about the eternal nature of families.

So many things in the gospel have become more significant for me. Even simple words or phrases that I've heard my whole life, like receiving a "remission" from our sins. That word is associated with so much profound relief for me. A remission is such a release from anxiety and pain.

Anyway, I'd better post before I ramble too much.

Monday, April 11, 2011

The man likes his monocytes

Andrew is a big fan of monocytes. He's really good at making them. Those and platelets he seems to make in abundance. He made enough that they let us go today (day 22), which is certainly very early for round 4; however, he's been eating great, and he hasn't had any fevers for more than a week. For some reason, though, last week he seemed to be in pain again for a few days, so we put him back on dilaudid (again because tylenol and oxycodone weren't cutting it). We talked to the people next door (the Smiths) and apparently Tanner sometimes gets pretty bad joint and muscle pain when he recovers. It's nice to have people around who know what Andrew's going through and can give me hints as to what's going on.

Kim's funeral was beautiful. Just about everyone on the unit was asking everyone else to get time off so they could go, and I saw at least 20 nurses and techs there in Logan. I continue to be impressed with the faith of her family and inspired by her life. She leaves such a legacy behind her--one that will be hard to live up to.

I've heard of 3 more AML diagnoses this last week. It's something I'd never wish on anyone, and it's hard to see the same things happen to these people. I just want to tell them that even though things seem to be going very very badly that it really gets better, and in the end, it's really okay to have a kid with cancer. You really can be happy again. It's just so much to take in, and I think we had it easier than most because we had a whole week and a half to let it simmer in our minds before we were admitted.

Omi taking care of Andrew. You can see where he gets his pretty brown eyes from.

There was one week where it was pretty obvious that Andrew was feeling crummy. He really showed it in his face.

Andrew was getting his top two chompers down this time around. It was hard to distinguish that from chemo pain, but it was SO nice to see him feeling better.

We really just love the staff at Primary's.

Thanks so much for your faith and prayers. I've really been feeling it lately, and it's helped me get through some pretty emotional times these last few weeks.

Tuesday, April 5, 2011

Lately

Someone seriously must have spiked Andrew's line with caffeine. Every time I look over he pants, then grins, and goes back to banging his toy on the side rail. It's fun to see him excited about life. Just not as fun at 11pm :).

Andrew got a fever early yesterday morning that broke that evening. It's almost expected during round 4 and certainly not uncommon during any round up here. Nonetheless, they're crazy about prophylactic antibiotics (with reason), so they did vancomycin for 48 hours, and we're back on the fortaz (ceftazidime). Man, seems like we can never get away from that stuff. He has really been recovering well even though his counts took a nosedive yesterday and today. From Thursday to Sunday, he was on hydromorphine (which is quite a bit stronger than morphine) every 2 hours because every 4 hours just wasn't cutting it. I'm so glad that part of everything is over and he's not in any overt pain. I'm also so grateful he never stopped eating (or rather drinking--he stopped eating solids). I feel so lucky for how well he's done, and it was a huge burden that my mother-in-law lifted by taking nights at the hospital for an entire week. That woman's got stamina.

I keep thinking about Kim, and how suddenly it seems like she left us, and I still don't believe she's gone. I really feel like we lost one of our own. Just remembering how the pit of my stomach sank when my nurse came in that morning and said that I'd better go in there and say my goodbyes. Every nurse I've talked to says they're going to her funeral. Every single one I've asked. They all say the same thing--how she just took a place in their hearts and never left. They all keep saying "you can't help but love her." I feel the same way.

Sunday, April 3, 2011

Our little pterodactyl

Today Andrew has been doing much better. We have taken him off dilaudid (hydromorphine) , which is good because it completely stopped all peristalsis and he hadn't had a bowel movement for 4 days. This morning he spent about 45 minutes climbing all over his parents and this afternoon he spent about an hour running around in his walker. As far as the constipation goes, last night at about 3 am the miralax kicked in and as the nurses reported, world war 3 broke out. Not only was the cleanup quite involved but they also had to do a central line dressing change and he was a pound lighter this morning.

Andrew received platelets yesterday and so they jumped from 13,000 to 62,000. Andrew's RBC is also just about to normal levels; now its just time to wait for those neutrophils.
video

Friday, April 1, 2011

Sweet Kim

I watched out my window all day yesterday as nurses, techs, doctors--just about everybody came into Kim's room to say goodbye. What a sweet angel she is. She's endured so much. We've all learned so much from her and from her family. I feel so incredibly lucky that her parents spent a little bit of their day yesterday with me, sharing their thoughts about the situation and their feelings. I've thought a lot about the fact that she was ready to meet her Maker, and how I still feel so unprepared. How I wish I were more like her. She's taught me so much about forbearance, patience, and just humility. I'll miss her greatly.