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.