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!!!

Home Sweet ICS

Andrew keeps getting better and better. His ANC was 3500 today with a white count of 5.3 (I think)!!!!! This is amazing news. His platelets are coming up, and his hematocrit is stable at 30. They starting weaning him off the oxygen about 2 days ago, bit by bit, going down a liter of oxygen/hr every 4-8 hours or so. He is back on room air for the most part (which is 21% oxygen), except when he sleeps. We are waiting for a room to open up in the ICS to finish out the last little bit of monitoring. Hopefully, early next week, we will head home for good!!!

ANC climbing

Andrew's white blood cell count is at 3.5 (normal 6-17) and his ANC is at 1700(normal 1500-8500)!!! He has stopped Tylenol and only has a fever of 100.5F. He still has fluid on his lungs and around his heart, so he is still in the PICU for the next day or so.

Update

I was cautious to say that things were better yesterday because we've been let down just about every day, but things are definitely getting better. We're weaning him off the oxygen bit by bit, and although the process is very gradual and slow, at least we're getting somewhere. They expect we'll be out of here in 2-3 days and we'll be back in the ICS for monitoring.

He still is getting high fevers every so often. They seem to be less and less common, so maybe once or twice a day he'll spike. His ANC is now 400 and his white count is 1.5!! We are super excited.

We were sad to hear that our liver transplant friend, Ashley, didn't make it through her surgery. Ashley was a little angel who would write cute notes to Andrew. She was always wanting to make people happy and comfortable. Our prayers are with her family.

Improvements

Today Andrew had a CT scan to check for invasive fungus in his lungs and/or sinuses as well as any abcesses that may be causing his symptoms. Before the scan seemed like a usual day in here, but after the scan, Andrew got quite a bit of energy and played with some toys for a while. The great news is that he has and ANC (absolute neutrophil count) of 200!!! The neupogen is definitely doing its job. The platelet bolus he got on Saturday bumped his platelets from 18,000 to 140,000, and they are still high. Hematocrit is still reasonable. The only thing that's still not great are his fevers and continued difficulty breathing. Both seem to be slowly (very slowly) improving.

Andrew had his NJ (naso-jejunum) tube placed. Actually, it should probably be called an ND tube (naso-duodenum) because that's actually where it ended up. They didn't want to do a nasogastric tube. He gets medicine and milk through it. This means that he doesn't have to have a lot of meds through i.v. like Tylenol, and ondansetron.

We were able to see the CT scans. The results were negative for anything bad. The neat thing was that we were able to see where Andrew's cancer was under his eye and compare it to the CT scan done back in October. The bone that was missing from the original tumor before now has filled in. His cheek bones and eye sockets aren't perfectly symmetrical but at least there is bone there!

Sunday

We're starting to get the hang of the PICU and why they've set up the rules as they have. At first we didn't understand the rule not allowing parents in the unit from 7-8pm, or the food rules, etc, but considering the kind of patients and situations they have, it makes total sense to us now. Andrew stats-wise isn't getting better, but then again, he's not getting worse. His white count is just about the same as yesterday (the bands turned into neutrophils). The bad news is they found some fungal proteins in his blood (not necessarily indicating an infection, but evidence that he's been dealing with one), which is concerning. So far, that makes one detectable bacterial infection (Strep), one viral (Rhinovirus again), and now some fungal protein. They let us move another CT scan they wanted to do until tomorrow as well as placement of his NJ tube (they can thread a tube down his nose past his stomach to give him food, and it's less risky than an NG tube because he has less time to throw it up). They're letting us rest today.

Andrew is sleeping a lot. He seems to be unhappy when he's awake (no duh, right?), but I'm hoping and praying that things will get much better tomorrow so the docs will intervene less and Andrew can just continue to heal.

I really like our infectious disease doc. He said that a definitive diagnosis would involve a lung... he didn't even have to finish. Either a bronchial lavage or a lung biopsy would be very invasive procedures. The first one is self explanatory, but the second involves going in surgically, spreading the ribs apart, deflating the lung, then cutting out a chunk of lung. Getting back to the reason I like our infectious disease doc--he said that he really didn't care what Andrew had, just that he got rid of it on his own. He's not crazy about grabbing lung tissue, he just really wanted problems to get solved on their own as Andrew's counts go up. That was really reassuring to me because every once in a while, I've got the feeling that they just are just curious to know what it is more than being concerned for Andrew's overall welfare. I know that's not true, it's just nice to hear it.

Fevers

Andrew's fever is back. Went all the way back to 104F. But at least he is getting white blood cells back. Sometimes when they get white blood cells back they will actually get worse for a while. Also, his respiratory rate has been high today, about 110/min.

central out, PICC in

Things just move faster here in the PICU. We are constantly having to make decisions and question the necessity of various tests. With no central line Andrew had to get poked multiple times about every 3 hours last night for labs (both venous and capillary). He is really starting to be weary of other people around him, which is sad because normally he is a very social kid. We just hope that soon forgets this experience and starts to be trusting again. This morning was as unorganized as can be. Our night nurse didn't realize that she needed to start platelets a half an hour before his central line came out because his platelets were at 18,000 and surgeons prefer 50,000. This mistake almost compromised the surgery, which was done at the bedside. Our day nurse picked up the slack, in time for the surgeons, who showed up a half an hour late and started administering sedation before they were ready to do the line removal. Long story short Lizzie became a primary assistant to the surgery performed on Andrew getting things for the surgery as well as getting people like the charge nurse to draw up extra doses of ketamine and versed. Eventually the fellow came (who was more or less supposed to be directing the surgery) and Andrew was so squirmy that they needed the attending to come help. As soon as the line was out, the i.v. team was supposed to be here to place the PICC line. They were late as well and so Andrew had to be kept under sedation for a while. The I.V. team was unsuccessful after 3 tries of placing the PICC and so one of our oncologists stopped it and demanded that the radiologist do it with his special equipment. So the radiologist on call came in and placed the PICC line. Andrew's sedation, which was only supposed to last for maximum an hour, lasted from 9:30am-12:00pm then 1:30-2:00pm. The interval between the sedations he slept, and has been sleeping for the 2 hours after the final sedation. It is good to see him at peace even though they say it sets him back from recovering from his breathing issues. It's a constant toss up here whether or not more interventions will make more interventions necessary.

Good news, between doses of Tylenol, his fever only went up to 100F this morning. We don't know if this is a fluke or if his fever is actually dropping. We have had false drops in his fever before. Other good news is that his white blood cell count increased to 0.4 (normal is 6-17), and he had monocytes and bands!!! Thank goodness for neupogen.

We had a special visit from Robert, Tanner's dad. He really brightened our day and helped us feel as though things were going to turn out well soon.

We feel hopeful that Andrew's condition will continue to improve. We aren't leaving the PICU very soon, but progress is being made. We really appreciate the thoughts and prayers.

poked and prodded

Well its been a long day. His fever is still dependent on Tylenol. When the Tylenol runs out, he spikes a high fever again and his respirations as well as heart beat spike. So, when he has enough Tylenol in his system the day is pretty relaxed, but when it wears out, the whole PICU crew starts to get concerned. This afternoon however, was not relaxing. The doctors have all been discussing what to do about Andrew. It has been a week since any blood cultures came out positive and so his fevers should be going down by now. They decided to to an echocardiogram, CT scan, and pull his central line. We did the echo and were in the process of the CT when his line broke. That cemented the deal that they are pulling his central line. They eventually decided to hold off on the CT for a little longer. Anyway, the surgeon was here to remove his central line but there was no one who is able to place a PICC line. So rather than sedate him twice, we had the central line glued shut over night and we are having them remove it tomorrow when they can place the PICC line. Which brings me to the final bit of news. Andrew's breathing is still a concern and so rather than him going under general anesthesia they will have to do all of these procedures using sedation and local anesthesia. We are not looking forward to Andrew being cut open while awake. It is a small quick surgery but sill not fun.

baby steps

Progress is slow and to inpatient parents seems almost non-existent. We are crossing our fingers that his fever might be breaking. This morning, an hour before his Tylenol was due, he had no fever. We aren't getting our hopes up yet because occasionally his fever will go down right before it spikes back up to 104F, but it is encouraging. Also, Andrew is learning how to sleep through a lot of noise and pokes down here in the PICU. We hope this trend continues upstairs when we make it back to the ICS.

Lizzie was able to go to Tanner's funeral today; our prayers are with his family.

We miss the ICS, its kind of like a family up there. All of the doctors, nurses, social worker, and techs know us and know Andrew. We have lived there so long that walking down to the parent room is as normal as walking out to the kitchen at home (still rather be home). Anyway, its much easier to handle trials when you are around that kind of support group. We really appreciate the ICS doctors and nurses who have come down to visit us, just to see how we were holding up.

Here are the fliers which are all over Utah:

Andrew is waking up so I have to go

More Updates

Andrew is still stable. They have gradually decreased his oxygen percentage to 40% (room oxygen is 21%), but the pressure is still at 8 liters/minute. This makes Andrew very uncomfortable. We're two steps from intubation, but it seems like although Andrew is still respiring at 60+ breaths/minute, he's kept his blood gases stable. His chest x-ray from this morning shows that his lungs are still full of fluid, but there haven't been any dramatic changes in that department.

I won't sugar coat the fact that he's pretty miserable, and so tired of breathing so fast. He has barely kept anything down, and he's maxed out on anti-emetics. Dermatology came by this morning to biopsy his rash (did I mention he developed a rash? it's more like red spots). The main hypothesis is that it is a fungal infection on his skin (which can easily happen with neutropenic kids), or it may just be a drug reaction to his antibiotics. The dermatology people say it looks more like a fungal rash than a drug reaction. They told me they were really sorry, but they'd have to do two spots instead of one because they often need 2 samples, and they really didn't want to put him through that again. Okay, sounds good. She injected him with lidocaine, took a 3mm diameter cutter thingy and went all the way down to his fat. It was a sizeable chunk of skin for a little guy, and it's deep enough and bleeds enough that they needed to put in a stitch. This is the absolute most they do without actually putting him under. It's such a sad thing to see hold him down and inflict pain because he doesn't know that it's actually a good thing, and he's not old enough that I can tell him to be brave or anything. Since then, he's cried every time someone draws from his line, changes his caps, or listens to his heart or lungs, which he has never done before. He is truly traumatized. I was glad it was all over with so we could just get answers.

He's NPO right now (nothing orally except his oral meds) because of the risk of aspiration that comes with such a high-flow nasal cannula, so I have to pump exclusively (I'm planning on nursing until he's no longer immunocompromised). It's nice to have a little break here and there and just get a breather. This afternoon I took a quick break and when I came back, Andrew was screaming his head off and the dermatologist was stitching up yet another biopsy. What the??? One of the oncologists (not the infectious disease people, or even the dermatologist) had ordered yet another biopsy. She insisted that it was necessary and it had to be done right now. Come to find out, only one of the two other samples had been analyzed, the first sample being negative for fungus. Andrew has had high fevers and has really struggled to breathe all day, and a fungal rash is truly the last thing on my mind. I still don't see why this biopsy was necessary (the first two they put in formalin, this one was supposed to grow a culture), but right now, I care a whole heck of a lot more about his comfort than a stupid sample. Even if it did come back positive for a fungus, they most likely wouldn't change his meds. I haven't gotten this angry/upset/flustered for a long, long time.

It was ironic that this happened because I had just convinced the attending not an hour before to not do a peripheral blood culture (i.e. a venous poke) because, frankly, it doesn't make sense at this point in time (it would have made sense when he first had a fever). If he had the infection harboring in his line, a culture drawn from it will show it. If the peripheral culture and the line culture are both negative, it doesn't get us any more useful information. I'm fine with other pokes like cap gases, etc, but these two just did not make sense for trying to make him get better. As one of our friends who lost their little girl last January told me, the motto of the hospital really is the child first and always. The child's interests reign supreme. I am no longer worried about offending residents, nurses, and even seasoned doctors if it means that my child has to go through less pain. It took a while, but I have become much more assertive in asking why exactly are you doing it, and what's it going to show you? Can you wait? I need to calm him down, etc. Because these people don't know Andrew, it's even more important to ask these questions because I know his history the best.

Even with all the misery, I know that it's good that we're down here. Although I feel less comfortable with the nurses down here because they aren't as familiar with Andrew, I breathe easier knowing that he's monitored very extensively. However, I have noticed more alarm fatigue down here in the ICU than up in our ICS townhouse. I am happy they let me sleep in the same room, because even if they don't notice something, I will. After today, I am even more crazy about staying with him all the time.

The other thing that's been really upsetting to me today is that I can't go to Tanner's funeral. I really love funerals not just because of the closure aspect, but because I love the idea of gathering together and celebrating a person's life. I really wanted to be there for his parents, and learn more about the kind of person Tanner was. I can only surmise what kind of a person he was from knowing his parents, and I am sad I can't honor his memory by being there.

Thanks again for the faith and prayers. I really need them. Even with the extreme sleep deprivation and stressful times, I know I am being supported because normally I would have stopped being able to function by now. There's not much that many of you can do for us right now but what you have already been doing. Thank you.

More and more tests

There's so much to update, but the quick update is that Andrew is on a high-flow nasal cannula that has significantly helped his respirations decrease from around 100 to 70-80 per minute. Apparently 30-40% of AML patients get a Strep infection, and infectious disease tells us that he hasn't heard about any other organism in that first blood culture, so it may just be a single organism after all. It's possible that Viridian strep is causing pneumonia and the persistent fevers, but it's less likely they are causing the red spots on his arms and legs. Because of this, we're seeing the dermatology people and he got a pretty traumatic biopsy this morning. I think he finally may be developing a fear of doctors now.

Things are still touch and go, but we know we're in the right place. He's still breathing with a lot of effort, holding his breath, then catching up, but things go so much better when he's sleeping.

By the way, Andrew's famous! I'm almost positive he was the first patient in the PICU to receive intravenous tylenol (the drug I was complaining we didn't have in Round 3). It's been really nice because as of today, he won't keep anything down at all, and we really need to control his fevers.

They're challenging him with the oxygen coverage so he has to work for his air. Over-oxygenating for a few days will actually cause scar tissue in the alveoli and sometimes can increase the free-radicals in his body. He was on 100% oxygen all night long, so... sigh.

This should all be under control when his counts come up, but so far, we've seen no signs of life. His white count is still at .1 (normal is 5-17), so we're hoping the neupogen does its job.

I just went out to round with everybody. Sounds like we'll be here for at least a few days. Thanks so much for thinking of us right now. We really appreciate the love and prayers.

Time to breathe a little easier

In the PICU the respiration specialists put Andrew on a special machine. It is nasal canula (no intubation needed) which humidifies the air a bit. This allows them to bump up the liters per minute oxygen he gets by about 4 fold. Basically it pushes a little bit of extra oxygen in the lungs so that he has to use less energy to inhale. His breathing is much less labored and and his respiration went from 11o to now around 70. This is a very good thing!!! Rather than just needing to be held all the time he actually sat up (with a little help) and played with the stuff around him for a few minutes. We aren't out of the danger zone yet, but we are breathing a little easier. :)