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!

In the Clear

Andrew went to see the oncologist yesterday--and he is still in remission!

Hematocrit: 39 (normal 33-39)

Platelets: 333 (normal 150-400)

White Count: 7 (normal 6-17)

ANC: 2800 (normal 1500-8000)

I am loving the numbers!

Lately

I know my posts on this blog have been scarce, but that's a good thing because it means Andrew is doing well! I'm also not the blogging type. We've had a really fun summer so far not having to worry about any restrictions. I've put my fears of cyptococcus and other germs aside and taken Andrew to a public pool and let him play with any kid who isn't sick. It has been incredible!

Andrew just recently let up on the sleeping but he's still a mini garbage disposal as far as food goes. He's definitely got a pooky tummy now and I can tell when I bring up the rear that he's definitely longer than he used to be. We have an appointment the Thursday after next for a CBC/differential, which I think will always get my nerves up no matter how far out it is. We saw a normal pediatrician recently as well, and I guess I really just don't see the point of going to one. Since Andrew has been born, we've never seen the same one more than twice. We'll see the oncologist more in the next 3 years that we live in Salt Lake than we'll see any pediatrician, our oncologist knows Andrew much much better, and as a pediatric oncologist, he's also trained in pediatrics. I mean, our new pediatrician is nice and everything, but I guess the extra well-child visits don't make a whole lot of sense in my mind. Oh well.

This last week I had the privilege of visiting the Smiths who recently lost their son, Tanner, to AML. I'm always so inspired when I get to talk to them and talk about the kind of person Tanner was. He was such a brave young man, and every time I think of him, I just feel proud. Proud of the way he dealt with his trials and the faith he had in God. I had a great sense of peace just sitting on their couch in their home. I think when you have a life-threatening illness that strikes you closely, you think a lot more about death and the afterlife. I can only imagine how that feeling amplifies itself many times over when a loved one passes away. You can't just hypothetically think about life after death anymore: your convictions are truly tested--and strengthened--by the experience. There were just so many times that we talked about Tanner and where he was and the realities of the Resurrection where I just felt the truth of what we were talking about. I didn't think it would be such a testimony-building experience to visit and talk about Tanner, but there were many times that I felt the confirmation of the spirit that what we were saying was true. I hope and pray that even though the pain of Tanner's passing is still so fresh and harsh for them that the peace from those truths can sustain them.

Worthy Causes

Being part of the cancer mom world is wonderful. You have this instant support system of amazing women who know exactly what it's like and are so eager to adopt you into their world. It comes with a staggering price--having your child diagnosed with cancer--and it is inevitable that you hear bad news on a regular basis. I recently learned that Daniel Allen, a brave 7 year-old boy of one of our cancer moms, just got an MRI that showed his cancer has returned. He has a particularly aggressive form of medulloblastoma, a cancer of the brain. They expect he won't make it to meet his little brother in the fall. His parents have decided to go to Disneyland as they only have a few weeks before Daniel will start to feel unwell. Some of the cancer moms have set up a fund for him. If you would like to donate, please send me your email and I will give you the paypal account email for them.

http://www.caringbridge.org/visit/danielallen6

Also, I was not able to make it to the inaugural curesearch walk held here in Salt Lake City last Saturday, but no one donates more to research for childhood cancers than curesearch. It supports the children's oncology group (COG) which makes the protocols and coordinates clinical trials. At least 80% of COG's funding goes to research. If you are able and so inclined, a lot of our friends on the sidebar have teams that walked last Saturday, and you can donate there, or at a general link:

https://www.kintera.org/faf/donorReg/donorPledge.asp?supId=0&ievent=452894&lis=1&kntae452894=B00B23C2BD734F5E8B076E85F2C0B34B

Love to all,

Lizzie

Still in Remission!

Andrew's still in remission!!! I'm super excited! These were his counts:

Hematocrit: 35.4 (normal 33-39)

Platelets: 313 (normal 150-400)

WBC: 5.1 (normal 6-17)

ANC: 1200 (normal 1500-8000)

I must admit that I was a tad bit worried about Andrew staying in remission these last 2 weeks. We sleep trained him at night, and then all of a sudden he was sleeping a ton more during the day. Also, there were some bruises that kept popping up on his forehead. These were things that you could easily explain as normal toddler things, like a growth spurt or more mobility, but seeing bruises will probably make me nervous for a long, long time.

3 Little Babies

I finally uploaded some pictures from a while back. These are the two other babies that were diagnosed with AML within a week of Andrew. All three of them were born within 3 weeks of each other, and diagnosed within 2 weeks:

I love these little guys! They are such champs!

We're all finally done! Yaay!

Update

It's been a while since we've written, so it's time for an update. We've been super busy getting back into normal life, including church and the grocery store! I feel like next to being in nursery at church (which I think I might let him do after next winter), being in a grocery cart has got to be one of the dirtiest places. Andrew's doing really well overall. He's still walking with furniture (which he's been doing for 6 months), and I'd say he's back to his normal cheery self. Sleeping is still an issue sometimes, but I'm sure that'll improve with time and consistency that we couldn't get in the hospital. He eats like a champ now! He went from a yogurt-only diet to eating everything but veggies, which is a HUGE improvement! I could tell that he was feeling better a week or so ago when he started jabbering constantly, which he hadn't done since before the last round of chemo. For those who are interested, I'm still nursing him because technically he doesn't get adaptive immunity (B and T cell immunities) for at least 6 more months. This means that we'll start vaccinations then as well. Also, the chemo basically fried his gut, and breastmilk helps a lot with preventing Chrohn's and necrotizing enterocolitis in certain groups of newborns, so I personally believe it will help his gut heal substantially. I know it's not socially acceptable, but whatever.

His white count is a little below normal, and his ANC has taken a drop, but that is still within normal range. We've had him play with other kids, and it's been amazing! I love seeing him interact with kids his age. His hematocrit is also (barely) within normal range. The aspirate they did a little more than a week ago was negative. This is fantastic news!

Apart from the scars on his body, Andrew is indistinguishable from a normal 1-year old. He still has some physical, social, and psychological issues, but I'm sure those will fade with time. Some kids don't get much hair until they're 2, so I figure he fits right in. A lot of people have asked me what the long-term effects of treatment are. I didn't have the heart to look any up until near the end of our treatment, but I didn't learn anything new. I asked our oncologist what they were, and he said other than relapse or a secondary cancer (the VP-16 or Etoposide that he had can cause secondary cancers), the only other major side effect was heart damage from the anthracyclines he was on (daunorubicin and mitoxantrone). One nurse I had in the PICU said that her mom died from congestive heart failure from the doxorubicin she was given. That is always a worry. There is a certain percentage of kids (it's significant, but I can't remember the number) who acquire the defect during treatment and others for whom it takes longer. Like the potential for another battle with cancer, this one will just take time for the risk to pass.

I'm trying not to dread every clinic appointment, but I do. I think about Andrew relapsing all the time. I know the worry will fade with time, but I also know that if he relapses, things will be much worse. I've gone from thinking 'I can't believe we're home' to thinking 'I can't believe we went through all that' at least 100+ times a day. I try to have faith knowing that no matter what happens, everything will be fine. Heavenly Father has always taken care of us.

Every time I finished a semester in college, I got pretty sick within 2 weeks of the semester being over. I got sick with a cold last Thursday that put me out for the count for a few days (Andrew got it, but he seemed to be okay overall). It was bad enough that I was throwing up most of the night one night, and I couldn't help but think about all the cancer kids at Primary's who throw up all the time. Thank goodness for modern anti-emetics! I know, though, that those often just don't cut it and those kids feel like I did all the time. I was feeling pretty grateful that night.

Post-treatment Aspirate

Today was Andrew's last bone marrow aspirate!! Yaay! Our oncologist told us his marrow looked good pulling it out. That doesn't necessarily mean it has no leukemia cells, but at least it looks healthy. That's half of the reason they do it. It's amazing that they can bring the marrow to the brink of death 5 times and it can recover. The human body is truly amazing! We'll find out if there are any leukemia cells (blasts) in the next day or so. They wanted to do another CBC and labwork, but I convinced them to do it after they gassed him (you can either do an IV and put in the anaesthesia medication, or you can use laughing gas). I'm glad they did, because they ended up poking him 5+ times. Glad he was under for that. In our anaesthesiologist satisfaction survey we filled out today, there really wasn't much to say about his bedside manner except that we were glad he did gas.

Andrew is doing well. He's keeping about the same weight, but he's gradually eating more foods. Unfortunately, it seems like he has an ear infection, so we're doing some amoxicillin. That might be why he's been up at night, who knows?

We're trying hard to find good insurance for Andrew. It is harder than we were expecting, especially since he now has a pre-existing condition. Whoa, wait a sec, you might be thinking, doesn't Obamacare say no pre-existing conditions for children? Turns out that's not exactly true. We're weighing our options here, hoping that we'll be able to find something reasonable, or at least something at all.

A funny thing happened on the way from Walmart...

So one of our really good friends stopped by the Walmart in Salt Lake on 5300 South. Andrew's pictures were everywhere, and she saw one lady by a picture of Andrew. Their conversation went something like this:

"I know this baby" the lady says

"Oh really?"

"Yes. Sad story, very sad story"

"huh"

"When he was born, only 1 pound. One pound, can you believe it?"

"That's hard to believe. Really?"

"Yes, only one pound. But now he's healthy and home now"

"Huh, okay."

We just had to laugh. Whatever works for people, I guess.

Telethon

Andrew and his friends Brielle and Aubree (hopefully she'll make it!) will all be part of the telethon starting tomorrow night at 7pm on KSL channel 5. They told us Andrew would be on around 7pm, so yah! We're grateful to have the chance to do some publicity and give back to Primary Children's. We're so grateful for what they've done for us.

A bit of Normalcy

I've heard so much from people lately about how much they've been praying for us these last few weeks and how they continue to pray for us. We know those prayers have been heard, so thank you. We couldn't do this without your love and support. I've been overwhelmed with gratitude lately thinking about how great it is to be home, how much better I feel, how happy I am to be together as a family.

I must admit, though, that bitterness and disappointment and just plain sadness has been my unwanted companions this week as well. I go from feeling so happy to be done and so grateful that he lived through this (our oncologist tells us that we can scratch off the 10% mortality rate attributed to the therapy), but then I think of all the pain he's been through and is still going through, and it's a little overwhelming. I've made up for all the crying I couldn't do in PICU, thinking about how much pain he was in. I just think of all the times that he just wanted to be held--I didn't know why, and I could only guess. Thinking how annoyed I sometimes got and still get that he just wants to be held all the time, but then how guilty I felt for being annoyed because this is probably the only way he really knows how to cope. I know we've had help in the PICU--that we've been looked after and supported on the other side--and I'm sure Andrew was more able to cope with his pain and discomfort with that help.

Lately we've been thinking he's nauseated, or has acid reflux, or just general malaise, and in reality, it's probably a combination of all of those. He was really really sick in bed for 3 weeks, and he didn't have anything going through his gut for a week of that, so no wonder he still feels crummy. Our oncologist told us that for adults that have been through what Andrew has been through, they feel rotten for a long time and will actually do physical therapy to undo some of the atrophy that occurs very rapidly when you don't use your body. Our oncologist expects that Andrew won't be back to normal for several months, that he'll miss a few milestones, etc. It's very nice to hear what to expect because it's been frustrating to see him regress in so many ways. He's not eating or sleeping well, and he's not interested in toys very much, but oh how we've enjoyed the sun. I'm a great believer in being outdoors and enjoying actual daylight and sunshine. I think it puts me in a better mood and helps the healing process just to be outside.

I knew that a decade ago the treatment for AML was a lot harder. I didn't realize how much harder it was, though. Our oncologist told us that kids would go down to PICU 2 or 3 times per round. Now that is truly overwhelming. They've tried in the last several years to decrease overall morbidity while still keeping their remission rate as high as they've been able to get it, and it sounds like they've been successful as far as I know.

On a brighter note, all of Andrew's counts finally fall within normal ranges. Every single one of them. Most of them are on the low end of normal, but still... normalcy. It's what we've come to be grateful for, and it's something that thousands of people struggle to return to after a cancer diagnosis. So much for which to be grateful, and the blessings just keep on coming.

Pictures of the last few weeks

I have so much to write about what exactly happened these last few weeks to our family, but it's really hard to put in words. When we came home Saturday, I felt overwhelmed with gratitude that we could actually come home. That Andrew lived through that experience. If things kept going the way they were for a while there then I would probably be planning his funeral right now. I'm just amazed that he finally made the turnaround Monday before last and started breathing on his own, more slowly, and more deeply. A lot of people have asked me why we didn't stay in the ICS too long (it seems like we just went from PICU to home, but that actually does happen). They were really conservative downstairs in weaning him off the oxygen very slowly, because sometimes kids will regress when they get let off too quickly. So, we did stay down there a little after so they could monitor us (we could have probably gone to a regular cannula upstairs a day or two earlier). Also, Andrew really did just recover very quickly.

A couple of nights ago, Andrew went to the ER (see last post), and I just couldn't handle the stress anymore, so Stew took him. I'm still trying to get out of emergency mode and it's been hard to process the emotions of the last few weeks. From losing a very good friend to coming a little too close with Andrew, we're just trying to ease our way back into normal life. Andrew's doing a little better every day--you can tell he's not as traumatized by people anymore--and he's eating a little bit now.

Here's the last L-aspar shot of chemo that Andrew had. Little did we know we were going to give him Neupogen shots every day for the next number of days. I think a cold pack helped him not feel it as much, and I really wish I'd done it sooner.

Andrew really started feeling lousy a few Saturdays ago (the day that our cancer friend, Tanner, passed away). I don't know if Andrew unknowingly mourns his friends, but for some reason, he always gets very sick when one of them passes away.

The first step to try to up his oxygen saturation (measured by a pulse-oximeter on his toe) was a blow-by. We soon realized it wasn't working well enough went we put it at 10 liters/minute right up to his face and he was still de-saturating.

The next step was the very uncomfortable nasal cannula that has never worked in the past because he always ripped it off. He still did, but eventually lost enough energy that he didn't fight it anymore. His breathing always got worse with his fever, and Tylenol every four hours only made a dent.

The next step was a non-rebreather, and then this fancy bit of equipment that the respiratory therapist had to install in our room. It didn't work well enough by this point (we went into the PICU later that night).

The next step (and thankfully, the final step) was a high-flow nasal cannula (just a lot thicker than a nasal cannula) going at 8 liters/minute straight into his nose. I can't imagine how uncomfortable this must have been for him. The point of this contraption is to force air into his lungs because he wasn't breathing deeply enough. The analogy I thought made the most sense was blowing up a small balloon (it doesn't take a lot of effort) versus a bigger one. The cannula just makes blowing up the big balloon (an infected lung) easier. If he wasn't stabilizing, the next step would have been constant sedation and a C-PAP (just about no kid can tolerate that one awake). After that is intubation, and we just didn't want to even think about that one.

They eventually added an naso-jejunal feeding tube up his nose that they snaked all the way down past his stomach. It ended up in his duodenum until my finger caught on the side of his nose and accidentally pulled it out a few days later. Whoops. Along with his cannula and NJ tube, you can see the leads on his chest, the amazing nurses downstairs who figured out his meds with only a single-lumen PICC (coming off his elbow), and one of his skin biopsies on his thigh.

Eventually they weaned us off the oxygen and sent us back upstairs for monitoring. Since his ANC was high enough, I just put him in this thing and had him run around the halls for a couple of days. He was still sluggish and clumsy, but I think he enjoyed running into walls and nurses.

Ringing the bell. No more chemo!

We love the staff at Primary's! They are the best!

Andrew's first bath in 7 months!!! We were so happy to just be able to throw him in the bath and not bother with sponge baths any more.

Busy busy busy

Well Andrew got his PICC line pulled yesterday. This is good, bad and exciting. The good part is that lines are always an infection risk, the bad is that he will need to get his blood drawn the normal way on tuesday, which is painful, and the excited is that our little Andrew is line free. Other than a lot of scars and bruises, he looks like a normal boy!!!

The first night home we expected to get no sleep. The second night home we were hoping for at least a little sleep. Didn't happen. Andrew was sweating really badly with no fever. We couldn't figure out why. After talking to an ICS NP we were told to just monitor him. Then he started gasping. The gasping continued even after we had gotten him to sleep (it took from about 8pm to 12:30 to get him to sleep). We figured it was due to pain, rather than not breathing well. Just to make sure the ICS fellow on call told us to go to the emergency room. So Andrew and I hung out in the ER until about 3:30 in the morning. They prescribed him oxycodone and we went home. Soon after we got home Andrew fell asleep and slept well until about 10am... without pain killers. Hopefully it was just a little thing that affected him for a few hours.

Home sweet home

Our little Andrew is home!!! He had his last dose of vancomycin from noon to 2, then a bit of paperwork and voila we were done. The nursing staff sang "happy last chemo to you," Andrew rang the bell, and after some hugs and pictures we were on our way home!!!