A whole year gone by

Exactly one year ago today, Andrew left the hospital for the last time.  When I re-read posts I've made on here, it still surprises me how easily the tears come.  I'm still not quite able to put myself back where we were a year ago, but I am so grateful we've made it this far.  Every milestone since one year ago has put cancer further and further in the back of our minds.

He had his one year post-treatment ECHO last Thursday to see if he had any heart damage from the chemo--a well-documented side effect of taking anthracyclines.  There is a lifetime limit of anthracyclines you can take, and the damage can appear years after treatment.  Other than relapse or a secondary cancer, this is our biggest worry.  Andrew took daunorubicin and mitoxantrone (also known as the red devil and the blue devil).  They really are very effective drugs--when they work, that is.  For some reason, I always felt like the other chemos in his cocktail were just seasoning.


Andrew did so well during the ECHO.  I was so worried the whole week that he would need to be sedated, which I absolutely hate watching, but he didn't have to!  The fellow was telling me that he would almost surely need to be sedated at his age so he could sit still, but after asking some other cancer moms and the technician who did it, it seemed silly to worry about.  I was reminded again why I love Primary Children's so much--we had a very compassionate and competent tech who, instead of just sticking wires on his chest and holding him down, took the time to talk him through it and show him exactly what he was going to do before he did it.  I'm guessing the sucker and the movie in the background helped a bit, too.  When I was watching his heart--the first time I have really seen it since I was pregnant with him--I just wanted to say 'Keep going!  Keep going!' hoping that that little pump would listen and keep working hard.  I don't know what the results were (they haven't called me), but his heart just looked so perfect I can't imagine any other outcome...  It's amazing--as horrible as this whole cancer thing is, it has made it  impossible to not turn to the Lord almost daily for reassurance that everything will be okay.

St Louis

I would post Andrew's numbers here for his 8-month CBC, but I have no idea what they were anyway. I've gone from breathing down our nurse's neck until I got my printout to assuring them that no, I don't need another printout, thank you. Our visits to the oncologist have become,well... boring. "Boring is good, we like boring," they always say. I think that despite the uselessness of seeing a doctor for a blood test, for them, seeing old patients that are healthy again probably makes their day. I've got to admit, though, when I look on my calendar and see that we have an appointment coming up, I still get something. The closest thing I can think of is an itch. We feel like Andrew's in the clear, but then we think hmm, he did have a lot of bruises on his leg the other day... and he's been pretty crabby lately, and kind of a bad napper... he's been sick, too... The itch just doesn't go away until we get that CBC.

I think that it really is true that gratitude and happiness go hand in hand because I've been feeling a lot of both lately. We still thank Heavenly Father every day that Andrew is healthy and that we get to keep him. It took me a while, but I finally buzzed his hair. It was starting to get out of control and in his eyes.

Stew and I spoke at a Red Cross dinner where we got to thank platelet donors for what they do. These were people that donated more than 12 times last year.When we asked them why they did it, it was humbling to hear the responses "I've been given such good health, I just wanted to share" or "It's just become a habit for me," etc. It was amazing for us to just think of how many lives were saved just by people in that room.

So, I went out to St. Louis to help out my sister with her new baby girl for a week and a half. Things were going pretty well until 3 days in when Andrew quit eating entirely and got a fever. He also had a ton of bruises on his leg, which I could partially explain away from being in a new place, but still... We hopped in the car and drove to Saint Louis Children's hospital and got his blood drawn for a CBC. He was still in the clear, we found out, and I was just kicking myself for having a hair-trigger response to a normal infection.

The fever didn't go away though. After a few all-nighters (and a few days where I was totally useless to my sister), I finally called the hem/onc people again, and asked them what I should do. Things were getting worse--his respirations were quickening and until the tylenol kicked in, he was even gaspy, and the fever had just been going on for 5 days by that time. Some poor resident told me (at about 2:30am her time) that sometimes kids just get stuck in a cycle where fever and dehydration just feed each other and they just need to be rehydrated. She told me to go to the ER where they'd have the proper equipment to rehydrate.

So I got a free all-expenses-paid stay at St. Louis Children's Hospital. His left-lower lobe of his lung was wet, and the X-ray confirmed pneumonia. He was saturating in the low 90s without oxygen, so that was a bit worrisome. They also did a little swabby and it came back positive for RSV. Phew! I know it sounds strange, but I was so happy to have a reason. We had some fantastic doctors both in the ER and in the catchall unit upstairs. It was funny that at one point, when the doctors and residents were rounding on us in the ER, Andrew kept on saying "Outside??? Outside??" The attending started laughing because he could tell what he wanted, and he knew that he wouldn't be able to go outside for a while. They put us in isolation for obvious reasons, but it just so happened that the room we were in was, not even joking, a "double suite" as they called it. Sadly, it rivals our apartment for size (the picture makes it look a lot smaller than it was).

I've got to admit, accommodations were a lot nicer here--my bed was a lot longer, right next to a great view, and there wasn't any bump in the middle of your back. Of course, that is where Andrew wanted to sleep.

I was grateful for the nurses at Primary Children's who scrub the hub, catch all of the pumps at night, and do accurate reporting of intake. It was a little disconcerting when I saw the ER nurse very briefly brush the end of the hub with a little alcohol swabby (you are supposed to scrub it for 15 seconds and let it dry for 15 seconds). The resident the next morning was really worried about us when she saw on the report that Andrew hadn't eaten or drunk anything. He really had perked up and started eating within an hour or two of getting fluids and his fever was completely gone. When they were rounding on us and debating whether or not to let us go, the door was slightly open, and Andrew was running back and forth all across our room squeaking and squealing and playing peekaboo with everyone rounding on him outside the room. He also grabbed a scooter toy and kept banging it into the wall, and threw other toys around the room saying "uh-oh!" I couldn't have asked Andrew for better timing to be a crazy toddler than just then. Maybe he knew that was his ticket out of there because we finally left a few hours later.

For my Saint Louis souvenirs, we now have an awesome new sippy cup, a pack of free diapers, and a stethoscope. The attending doctor, poor guy, also has an RSV souvenir, as Andrew coughed right into his face. D'oh!

6-month CBC

Our last visit was 2 weeks ago, and his counts were perfect:

Hematocrit: 36

Platelets: 356

White Count: 9.2

ANC: 3200

Andrew also got his second dose of flu vaccine that he had last month and is starting his normal vaccination schedule again this Wednesday at the pediatrician. We're going to start seeing the oncologist at 2-month intervals now, so our next checkis February.

It's incredible to watch his central line scar keep fading. I guess the smaller you are when you get it out, the more it fades.

I guess snow wasn't everything he was hoping for...

It would be about time to cut Andrew's hair, but it'll be a while before we can. It's just such a cool, novel thing for us that I want to keep it for as long as we can get away with it.

5-month CBC

It's time for a new post. I've been putting it off because there are some things I should probably say, but I hesitate to use such a public forum. First, though, is good news. Andrew's CBC from Monday looks great.

Hematocrit: 36

Platelets: 314

White Count: 7.4

ANC: 2600

He was able to get his flu shot at clinic (he'll restart the normal course of pediatric vaccines in December). Also, the Radiating Hope Marathon was a success! They'll be able to ship the particle accelerator to Senegal! There's also a bit of mixed news. I wanted to get the full story from our Primary Oncologist before I posted it on here. As many of you know, it turns out that the last round we had (round 5) was totally useless. We went into it knowing that it could either make a 5% difference on the rate of relapse, or no difference. It turns out, especially in cases such as Andrew, the latter is the case. No parent enjoys the idea of poisoning their child, but to know that I did it for no reason just about killed me. As I digested this information, I had a lot guilt about it, wondering if I would have delved a little deeper into the literature, would it have pointed that way? Or if somewhere along the line, did I just totally miss a prompting?

I wanted to know exactly what our oncologist knew at the time, but there's know way to know that. Anyway, he's required to follow the COG protocol no matter what he reads and put us all neatly into our little risk categories that determine the treatment protocol based on this risk factor tree that they all agree on. We put so much trust into our oncologists, and we always hope that they would treat our children the same way they would treat their own.

There are two things that have helped me this, both of which I remembered from General Conference back in April. One is a story that President Packer shared about a rural country doctor who came in the nick of time to save a mother in a moment of crisis during the birth of her first child. Although all seemed well, the mother died of an infection a few days later that the doctor had been treating from another patient that same night. The advice that was given to this young widower was, "John, leave it alone." Only as an old man did he see the wisdom in following that advice--that the bitterness would have cankered his soul and only brought misery to himself (http://lds.org/general-conference/2011/04/guided-by-the-holy-spirit?lang=eng, about 2/3 down the page). For the unresolved questions that I have about what we went through, I just need to leave it alone.

I don't know what the direct purpose of Andrew's suffering was. I remember the PICU doctors reassuring me that when Andrew was moaning under the sheet for hours that he wouldn't remember the pain because of the versed they were giving him through a tiny vein they found in his foot. Instances like these certainly weren't for his benefit or character-building, as I am sure he has forgotten it by now. I hope in the future I will be able to see how going through all of this will benefit us, but until then, I've thought a lot about the oft-quoted story that Elder Christofferson told, also in the last April conference. It's worth it to reprint here (http://lds.org/general-conference/2011/04/as-many-as-i-love-i-rebuke-and-chasten?lang=eng):

"President Hugh B. Brown, formerly a member of the Twelve and a counselor in the First Presidency, provided a personal experience. He told of purchasing a rundown farm in Canada many years ago. As he went about cleaning up and repairing his property, he came across a currant bush that had grown over six feet (1.8 m) high and was yielding no berries, so he pruned it back drastically, leaving only small stumps. Then he saw a drop like a tear on the top of each of these little stumps, as if the currant bush were crying, and thought he heard it say:

“How could you do this to me? I was making such wonderful growth. … And now you have cut me down. Every plant in the garden will look down on me. … How could you do this to me? I thought you were the gardener here.”

President Brown replied, “Look, little currant bush, I am the gardener here, and I know what I want you to be. I didn’t intend you to be a fruit tree or a shade tree. I want you to be a currant bush, and someday, little currant bush, when you are laden with fruit, you are going to say, ‘Thank you, Mr. Gardener, for loving me enough to cut me down.’”

Years later, President Brown was a field officer in the Canadian Army serving in England. When a superior officer became a battle casualty, President Brown was in line to be promoted to general, and he was summoned to London. But even though he was fully qualified for the promotion, it was denied him because he was a Mormon. The commanding general said in essence, “You deserve the appointment, but I cannot give it to you.” What President Brown had spent 10 years hoping, praying, and preparing for slipped through his fingers in that moment because of blatant discrimination. Continuing his story, President Brown remembered:

“I got on the train and started back … with a broken heart, with bitterness in my soul. … When I got to my tent, … I threw my cap on the cot. I clenched my fists, and I shook them at heaven. I said, ‘How could you do this to me, God? I have done everything I could do to measure up. There is nothing that I could have done—that I should have done—that I haven’t done. How could you do this to me?’ I was as bitter as gall.

“And then I heard a voice, and I recognized the tone of this voice. It was my own voice, and the voice said, ‘I am the gardener here. I know what I want you to do.’ The bitterness went out of my soul, and I fell on my knees by the cot to ask forgiveness for my ungratefulness. …

“… And now, almost 50 years later, I look up to [God] and say, ‘Thank you, Mr. Gardener, for cutting me down, for loving me enough to hurt me.’”

I hope some day to be able to understand more of the reasoning, so that I can say, "Thank you, Mr. Gardener, for loving me enough to cut me down." I had been feeling really ungrateful, especially after finding out about how useless the last round was for us, but I am so, so grateful that other parents like me won't have to do what we did. We all know going into this, especially when we participate in clinical trials, that our children are the guinea pigs for the next cancer generation and that our numbers, responses, and outcomes will help increase the statistical significance of some study, somewhere that will help tweak the treatments to be more effective and less caustic. I can't imagine the sacrifice of parents in the 50s whose children were experimented on (without parental consent) for our benefit.

This morning I just learned that one of our bone marrow transplant friends (not on the sidebar) has a cancerous tumor on her arm. Haven't heard yet whether this is a secondary or a relapse AML, but they're going in for a bone marrow aspirate today to see if there's any disease in the marrow. They say that she'll have to go through transplant again. I love and admire these people who were inpatient when we were and am still reeling from the news. Please keep them in your prayers.

Radiating Hope 5k

I'm sorry for such late notice (October is zooming right on by), but this Saturday is the Radiating Hope 5k at 9am at Liberty Park in Salt Lake City:

http://www.radiatinghope.org/get-involved/5k/

Some of our good friends have organized this to ship some radiology equipment off to Senegal so that more kids can get treated for cancer over there. You can run in memory of or in behalf of someone who had cancer, and we'll have a team Andrew Low going. Stew can't be there (he's got a conference), but I'll be walking it with Andrew.

Today is the last day to pre-register if you want to have a guaranteed t-shirt. I'm sorry for such late notice!

4-month CBC

And the numbers are:

Hematocrit: 35.3

Platelets: 235

White Blood Count: 9.4

ANC: 5500

I'm almost positive that I'll see signs of his relapse before it shows in his blood, but it still wigs me out every time. His ANC is probably a little high because he's had a minor GI bug these last couple of days that neither I nor the oncologist is very concerned about.

We've been outside all day every day (except for this last week that they put down fertilizer) and have just been loving the outdoors. Aubree and Mikhail (Andrew's two other cancer buddies) came to visit a couple of weeks ago just for a get together. Unfortunately, Aubree got her thumb caught in my bathroom door jamb and almost took it off, so they went to the emergency room :(. Poor girl has gone through so much in that short life of hers. I think when Stew and I have little kids around, we're always going to want to be within 10 minutes of a hospital for reasons like that.

I was hoping to get pictures of the three of them, but since Aubree had to go to the hospital, I only got ones of Andrew and Mikhail:

3-Month CBC/differential

We went to see the oncologist on Thursday, and the numbers are:

Hematocrit: 39.3 (normal 33-39)

Platelets: 326 (normal 150-400)

White Count: 7 (normal 5-17)

ANC: 2300 (normal 1500-8000)

No blasts! Yay! Each month that he stays in remission decreases the chance that he'll relapse. His relapse chances will drop precipitously after the one year post-treatment mark (next June), and will drop significantly again at the 18-month post-treatment mark (December 2012). I always get a bit nervous a couple of days before the blood draw, and our oncologist tells us that even people years off of treatment where the cancer almost certainly won't come back often get jittery the day before the draw. I guess I'm not alone, then. This is one little graph we've been going by ever since he got diagnosed. This is mortality for AMLs <20 years and the x axis is years since diagnosis.

It's always funny because when we mention numbers, oncologists will always tell us that numbers are better now because of the time lag for improvements in treatment and how long it takes to compile years worth of data. He'll have to redo all of his vaccinations because they assume his adaptive immune memory has been wiped. His ECHO that will hopefully not show heart damage is scheduled for next June. I'm hoping he'll develop the maturity required to sit still so we won't have to sedate him. We tried it once without sedation and he lasted about 30 seconds.

Also, September is National Childhood Cancer Awareness month. It's amazing how far they've come with treatment with overall mortality at around 20%, but the incidence of childhood cancers per capita is increasing every year and AML mortality hovers around 50%. All of the chemotherapeutics used in the standard treatment protocol for AML were discovered before 1980, and most were discovered before 1970. That's kind of pathetic. Oncologists over the years have been able to tweak dosages and combinations for optimal effect, but AML mortality hasn't really improved much for 20 years. With such a small piece of the funding pie (childhood cancer gets 3% of all cancer funding) and the suffocating regulation from the FDA, it's no wonder we're not progressing very fast.

I'm so grateful, though, that the standard treatment protocol worked for Andrew and that he didn't have to have a bone marrow transplant. Not having to deal with the side effects of a transplant has made recovery so much quicker and we've been able to have such a fun summer. As of 2 weeks ago, Andrew doesn't have to take his anti-pneumonia med (Septra), so he is off all his medications!!! Yaay! I'm having more and more fun with Andrew. He's gotten tons of hair and has been walking now for almost a month!