A beautiful day at the hospital.

Andrew has been admitted to the hospital once again and I think that he is enjoying all the attention from the nurses. He starts his second round of chemo today as soon as they pump him full of fluids (hopefully not as badly as they did last time). We are enjoying seeing our friends again and excited to keep going with chemo so that we can just get it over. Our new concern this round is how to keep him from getting tangled his lines, now that he is more mobile.

Back in Tomorrow? Maybe?

So his ANC (Absolute Neutrophil Count) was 800 today, up from 600 on Monday. They tentatively scheduled us for Thursday in case his counts went up to the magic number of 1000. This means we may or may not go in tomorrow for his aspirate and Round #2 of chemo. What a thought!

The oncology people haven't called me yet about this. I think they're probably still trying to decide...

Still waiting

Still waiting. His counts today were at 600. Shooting for 1000.

Waiting to go back in

It's been exactly three weeks since we've been home, and we've been loving it! The reason we've been out of the hospital so long is that his ANC (or absolute neutrophil count) is, as the doctors say, "unusually slow" in coming up. That's part of the reason they did a bone marrow aspirate last week--to see if there was anything seriously wrong with his bone marrow that was keeping him from getting white blood cells. They'll do another one a week from today before they admit him for his second round. Today his count was 500, the magical number they usually go by to let you out of the hospital in the first place, and also the magical number that reprieves us of giving him an antibiotic intravenously every 8 hours.

We are anxious to get back in the hospital to get through the treatments as quickly as we can, but at the same time it's been fun to watch Andrew become more mobile. He's rolling over quite a bit now. One second he'll be smiling at me, the next, he has rolled under the Christmas tree with it most of the way in his mouth. He's starting a soldier's crawl, but doesn't really realize what he's doing yet.

Stew's parents will be up for Christmas Eve and Christmas Day. We feel so lucky that they're coming to see us, as they have other kidlets they could be visiting.

Merry Christmas to all!

He is in Remission!

We just got word today--the blasts they saw yesterday were normal lymphocytic and myeloid blasts in the marrow--they didn't find any cancer cells! We are absolutely thrilled. As far as we are aware, it isn't common for AML patients to achieve complete remission after the first round. For AML, they set a normal "remission" threshold for 5% and call that good enough. This is truly a miracle.

We're still at home and aren't going to be admitted until his counts are higher (his ANC is only 300 as of Thursday), and it's very possible we'll be admitted next week. It's actually quite probable we'll be admitted on Christmas Eve, but man, I couldn't care less. This is the most awesome Christmas EVER!

We are so grateful for all of your prayers. We know we wouldn't be here without you!!! We have so much to be thankful for. I must admit that I've been a bit of an inconsolable grump lately about everything. I've found it hard to be rock-solid in my attitude, but I've been working on it with a lot of help from friends, family, and most especially Heavenly Father. I know we're still not done--4 rounds to go--but it'll be much easier knowing that he's fighting his cancer really well.

"Some" Blasts

We went in for an LP (lumbar puncture), an aspirate (a sample of the bone marrow), an intrathecal administration of ARA-C (a chemo put into the spine), and an ECHO today (to test his heart). This is all very standard procedure, and Andrew went in and out like it was no big deal. One of the doctors said she would do a quick smear for a look-see to see how many blasts, if any, that Andrew had. A smear means that you take a sample, whether blood or marrow, and "smear" it on a slide.

Next to the cytogenetics, this has probably been the time that I've been the most anxious. The doctor called Stew on the phone and said that she saw some blasts on the slide. Some? Some, a lot? Some some? Some, just every once in a while? Man, I wish I'd had the phone...

It's probably best that I didn't get to talk to her and that I wait for pathology to give us a percentage tomorrow. Since Andrew has blasts in his marrow, he's not in full remission, but they really don't expect that with AML, and certainly not after the first round. I'm really still holding out hope that "some" means less than 5%, which is the cutoff for remission in AML patients.

Andrew has been a tad bit cranky today, but I don't blame the kid. He's cutting his first couple of teeth :).

Back to PCMC

Well today is the big day when things start up again. We go at 1:30 to get a bone marrow aspirate in order to determine what condition his bone marrow is in. Andrew still has low neutrophil counts but since it has been two weeks the doctors still want to bring him back in to figure out what is going on. Most likely he will be admitted tomorrow (Friday) for his second round of treatment. For Lizzie this time has been quite nerve racking because the results of this aspirate determine whether or not Andrew needs a bone marrow transplant. We are hoping that he has gone into remission and so he won't need a bone marrow transplant.

Thoughts on a Sunday

I love having Sundays to remind me why I keep going and that I'm really living such a happy life. Oftentimes when I'm going through a rough time, I'll bargain with God and say something to the effect of, "Okay okay, I get what this is like, now what is it you want me to learn so I can be done with this?" My mom keeps telling me that we can't pick and choose the hardships we do or don't want to deal with, and we should certainly not try to tell God what to give us. But still, the question keeps running through my mind like a broken record: what is it I'm supposed to be learning? Even from the start of everything, I feel like many little bits of spiritual insight that I've gained have slipped so quickly away from me. I continuously forget the things that I have started to learn. I suppose that's why this trial is probably going to be with me for much of the rest of my life.

I've been trying to slow down a bit, reading church talks here and there about hardship. Two talks that have particularly stuck out to me that I think about every day, and sometimes many times a day are: "Come What May, and Love It" (the title of this blog) http://lds.org/conference/talk/display/0,5232,49-1-947-9,00.html and the talk "But if Not" http://lds.org/conference/talk/display/0,5232,49-1-439-25,00.html.

As I've struggled with the question of what it is I'm supposed to learn from all of this, I've realized from Elder Wirthlin's talk that I've learned at least two important things. The first is that I've come to understand, at least to some degree, what it's like to have a child that is really really sick. In other words, when I meet parents whose children are sick, I can at least partially empathize with their anxiety and feelings of helplessness. The second is that I've been a witness firsthand to other people's generosity to a huge extent. People close to us as well as complete strangers have gone above and beyond in reaching out to us. I'm trying hard to work on the faith to leave it in God's hands and trust that he knows exactly what he's doing. I'm trying hard to cope with the long-term implications of everything.

A lot of the issues I've had boil down to trust. Knowing that there's absolutely nothing I can do, and that's it's all in God's hands requires a great deal of trust and faith. Elder Simmons' talk "But if Not" has been particularly helpful on this point. Putting it in our own situation: Andrew's going to respond well to chemo, but if not... Andrew won't need a transplant, but if not... Andrew's going to be a healthy happy boy, but if not... We'll still have faith that everything will be just fine, that we're sealed to him, and that we'll have the patience and experiences that make us grateful for the many many blessings that we have. That we are doing this because we know it's the only way we'll get back to our Heavenly Father. How much trust Heavenly Father must be putting in us--trusting us to take care of one of his children!

We have so much to be grateful for! I really wish I had a picture of his eye when it was at its worst, but here are some pictures for comparison:

(at about 4 months)

(right after his biopsy)

And now his eye just looks fantastic:

Anyway, it's been super fun to see him this last week with more energy than he's probably had his entire life. Since his hematocrit has been in the 30s (a measure of the amount of blood that is made up of red blood cells), he's had so much energy. His motor skills and physical development have just skyrocketed since we've been home. Instead of holding his head up for 10 or 15 seconds, he's been doing it for minutes at a time. He's making huge strides with rolling over and crawling (which he kind of does--backwards and in circles). Anyway, so much to be grateful for, as always, and thanks again for your prayers.

We have an ANC!

It's been a week since they sent us home, and we're still here! It's great being home, and I'm so glad they didn't make us wait until he had an ANC(absolute neutrophil count), because we would still be in that little room at Primary's... They had scheduled an LP (lumbar puncture) and a bone marrow aspirate for today, but since he had no ANC on Monday and a pithy ANC of 100 today, they have bumped the surgeries until next Thursday. This means that we'll be admitted at the earliest on the 20th of December for his second round of chemo.

I know it sounds crazy, but I really wanted to have his surgeries today for two reasons--one, that prognosis is better when chemo regimens are spaced closer together, and secondly, because I really really really want to know if he's in remission. If he's in remission, it is unlikely he'll need a bone marrow transplant and all the complications that come along with it. We'll be hoping and praying that's the case.

In the meantime, we've felt a bit hypocritical by telling sick people and little kids to keep their distance while Stew and I have both gotten a pretty nasty cold. Andrew seems just fine, though. Stew has a whole heck of a lot of schoolwork to catch up on (2 finals and a huge paper), and even though we've been sick, we're just so happy to be home.

We are going home today instead!!! We will report back in a week for his next round.

Might come home...tomorrow!

So we've been doing what everyone here does after chemo's been done for a while... nothing! Just waiting for his counts to go up. Even though his ANC is still zero, his monocytes and bands (immature neutrophils) are picking up pretty rapidly. The attending this week mentioned in passing that if Andrew keeps it up, they'll probably let us go home on Friday. I knew we would probably head home soon, even without an ANC because the other 5-month old in here was gone splickity-split on Monday without an ANC.

So Andrew's scrotum is shrinking again. No one here seems to have a good explanation, so I'm going to say it's on a lunar calendar. A couple of nights ago, I kept missing urology: I went out lunch, and they ran after me and didn't catch me. I ate a can of soup for a late dinner in the parent's room down the hall as the resident stood outside my door waiting for me for 10 minutes. I finally had the nurse call her and transfer it in my room and Andrew pulls the cord out. Someone didn't want me to talk to urology! She eventually said they wouldn't do anything now or even between treatments, but they might go in after all this is over and do some work.... Oh geesh. Talk about a million dollar baby. I'm so glad they said he could resolve it on his own, though, so I'm hoping that between now and then, that's what will happen.

I go through cycles of being okay with Andrew having cancer and feeling okay, but then when I see other really sick kids that are in much worse straights than Andrew or think much about the long-term implications of everything, I get pretty down. So I went over to the Steele's room the other night. Can I just say that I love the families here? Fantastic, really. It's just great having another mom around even if it's not my mom. It's so funny to be sad when people leave the hospital because you miss the company, and the Steeles were almost out of here last Friday, but they're back again--and hopefully not for long. They have such a different set of challenges than we do even though it's basically the same disease. They have the advantage of being able to talk to their kid and assess pain or discomfort that way, but then again, I feel like Andrew doesn't mind being nauseated as much. I've seen him many a time have a huge grin on his face even while he's upchucking breakfast. He just must not feel it like he would if he were a teenager.

Anyway, I just really appreciate so many people who have said comforting words or sent prayers our way. We love you!

Need a Place to Stay...

So we have some good friends up here whose son has AML. He is 6 months old, and has 3 older siblings (all girls). They live in Provo right now, but they need to find a place to stay in Salt Lake while their son undergoes chemo treatments. They're looking for a basement or as little as a studio apartment to sublet for 4 weeks at a time for about the next six months. There is the Ronald McDonald House in Salt Lake City that a lot of parents stay in, but they would need to move out at the end of every cancer treatment (they're on just about the same schedule as we are, so that would be about 5 treatments). Also, if one of their girls got as little as a runny nose, they would need to move out, which would be a huge headache logistically.

I realize this is a really large request and a huge commitment, but if any of you know of a cheap place for her husband and their children to sublet (she, like I, mostly stays at the hospital), please send an email on ASAP.

Thanks!!!!

This Week

So Andrew has been doing really well this week. He's had another platelet and another RBC transfusion (making 4 total platelet, 3 total RBC), which both went smoothly. Even though his ANC is still zero, his total white count is creeping up slowly and his energy level is starting to really pick up. His diaper rash is finally almost gone (yay!), but he has had some intermittent diarrhea from the slough of antibiotics he's been on.

I just loved having Thanksgiving this week. We've had so much to be thankful for these last few weeks, and it's hard to express to people here or to God how we feel. I'm so grateful that Andrew doesn't seem to be in pain. It was so hard to watch him at the beginning and we are so grateful that has passed. We owe so much to the doctors and nurses who have been so cheerful and personable that being in the hospital isn't so much of a chore. The doctors are really up to date in academia, but at the same time, they're very much involved in our care and have his welfare is their highest priority. I'm so grateful for a little bed to sleep next to Andrew so I can be with him when he needs me in the middle of the night. I'm grateful for the other parents in here who are just there for us and know what it's like. I'm so grateful for the thoughts and help from friends, family, and coworkers who have come together to help feed us while we stay in the hospital. I'm so grateful for Stew's patience and strength as we go through this together. Most of all, I'm thankful for my Heavenly Father and the knowledge that no matter what happens, He'll be with us.

My thoughts are constantly on my cousin, Heather, and her sweet daughter, Charlotte, who is in the hospital in Washington (state). Charlotte has had a hard time breathing since Thanksgiving and as I understand it, the doctors are still looking for a cause while giving her respiratory support. One of my first thoughts when I went through this is that I wouldn't wish this on anyone else, and to hear them going through this right now just really hit home. We love them so much and will keep praying for them to feel peace and for Charlotte to recover soon.

Love to all!

Lizzie

There goes the hair

We have some friends in here who have a girl that is 9 days older than Andrew and 5 days ahead in chemo. Last week, she started to lose handfuls of her hair and her mother decided it was time for the buzzer. I noticed a few days ago some stray hairs on Andrew's bouncer, but I really didn't think much of it until yesterday when I ran my hand through his hair and got several hairs, each time. Hair loss and cancer are almost inseparable, and I guess I'm not quite ready to see his go; it was almost his trademark when he was born when he was known as "The White Kid with Hair." I guess now he'll just look like everybody else. I'm just so glad this is the only external manifestation of his cancer treatment, even though I know there's a lot going on inside.

We talked to the bone marrow people for about an hour and a half today. This is a conversation I really didn't want to have, and it ended up being just about the most depressing conversation I've had in a while. They say any extramedullary involvement doesn't bode well for prognosis, which I knew, but I was gearing up for the next big bout of information in a few weeks. Like the oncology people, the bone marrow people are great, they're just people that I hope I never have to work with. It was a very informative talk, and I learned that even had I found a way to save Andrew's cord blood, they wouldn't use it.

We went down for an ultrasound today because Andrew's scrotum has swollen up a ton in the last day or two. At first we were worried it was his actual testicle (which his last ultrasound showed had increased in size), but it was getting big enough that we were pretty sure there was fluid. According to the radiologist, his testicle is .47 now rather than .8 somethings!!! (I was too excited to remember the units). This is a good sign. We knew his eye looked much better, but we had attributed a lot of that to the surgeon debulking his tumor during the biopsy of his eye. Maybe, just maybe he's responding well to chemotherapy.

Andrew's been such a good kid through all this. The nurses keep asking me, is he always this happy? I've seen him countless times during "tummy time" get up on his elbows and do a face-plant because he's so tired, but still with a huge gaping grin on his face.

The Chemotherapeutics

In case you were wondering what chemo Andrew was on for his first round, he had:

An intrathecal (in the spine) dose of cytarabine (Ara-C) the first day, then cytarabine via his central line every twelve hours for ten days. He also had Daunorubicin given to him on days 1, 3, and 5. The daunorubicin was also administered via his central line over a 6 hour stretch, and on days 1-5, he received etoposide over a 4 hour stretch.

Common Side effects for these drugs are:

-Nausea/Vomiting

-Hair loss

-Pink urine

-Mouth Sores

-Loss of appetite

-Diarrhea

Less Commonly:

-Heart damage

-Nail beds that may change color and texture

-Sensitive skin

-Abnormal liver function

-Irritation to eyes

-Flu-like symptoms

-Low Blood Pressure

-Allergic Reactions

We'll have to see what the long-term effects are, but what we have for now is manageable. We're so grateful for modern medicine and the wonderful staff here at Primary's!

Waiting for counts to go up

So Andrew got another RBC transfusion yesterday because his crit got down to 19 yesterday (the normal hematocrit range is from 29 to 41). This makes for a grand total of 2 RBC and 2 platelet transfusions. I'm keeping tally so I can go make it up to the Red Cross. Andrew was pretty sluggish yesterday (as sluggish as Andrew gets), but about 20 minutes after his transfusion--bam! Giggly squirmy Andrew was back, but only temporarily.

Andrew has had a couple of terrible nights lately. You wouldn't know it, since he's such a good kid during the day. It's been the same thing every night--the night nurses offer to hold him for me in the middle of the night, then about 20 minutes after his midnight vitals, they run out of ideas and hand him off to me. At one point, he would only quiet down when he was in the crook of my arm for a 3-hour stretch. I'm running out of ideas, too. The nurses keep asking me, is he in pain? I don't think so--why would he only be in pain at night? One of the fifty or so handouts they give you called "Assessing your Child's Pain" partially defines pain for infants as inconsolability. He is totally consolable when I nurse him so... I really have no idea. They offered to give him a narcotic for pain, but we settled on an anti-emetic that has a sedative effect. Geesh.

At this point, we're staying in the hospital because Andrew's immune system is so compromised. He's really only getting Ondansetron and Benadryl for nausea. I'm hoping to help as much as possible by giving him the lactoferrin, lysozyme, CCL28, and all those good IgA dimers that are in milk. It's gotta help at least somewhat in preventing infection. Hearing about cancer patients who have died from opportunistic infections has made us paranoid, so until his ANC (absolute neutrophil count) is up, we're saying no visitors in the room at this point. His bone marrow is functioning and making leukocytes, just not the neutrophils we need to go home.

Neutral News is Good News!

I talked to our oncologist today, who gave us the preliminary results for the karyotyping of Andrew's chromosomes. This basically tells us a decent chunk of Andrew's prognosis--whether or not they'll continue with chemotherapy or go straight to a bone marrow transplant. Andrew appears to have a t(7;7) translocation, which is neutral when it comes to prognoses. But hey, to us, neutral is good because neutral isn't bad!

They have yet to get results for a FLT3 mutation that also carries with it a pretty poor prognosis. Of the dozens of people that they treated for AML (or that they know about/study, I don't remember what he said), only one so far has had the FLT3 mutation, and she's recovering from a bone marrow transplant right now. So, moral of the story is that it's unlikely that Andrew has this mutation, but we still don't know.

Andrew's pretty happy these days. He's definitely more clingy and a little hoarse (with a diaper rash from el diablo), but overall, he's been doing well. His hematocrit is at a 22, which is low and on the borderline for what doctors will want to do for a transfusion. Receiving blood products is always a risky business, so they'll only do it if he keeps dropping. Doesn't seem to phase him at all, as he still refuses to nap!

I continue to be inspired. Every day, I meet someone with a different story, a different perspective, a different attitude. I think facing a life-threatening illness truly changes you, and it's amazing how social barriers just topple as you instinctively want to connect with people. I just met a sweet couple who have been here only a few days and oh how I hope that their little boy has good chromosomes and responds fantastically well to chemo!!! My old labmates also pooled together to help us out, and I am truly just overcome with gratitude.

Day of Rest

Wow, the days have just seem to run by this last week and I haven't updated on here! Stew's mom came out here to help out on Tuesday night. She's doing a deep cleaning of our apartment, which I firmly believe I will never have the time to do again :). Stew has been going back to school and work and our lives have settled into a strange sort of normalcy. We've been meeting a lot of parents whose kids have AML--a 5 month-old, a 2 1/2 year old, a 17 year-old, and we have yet to meet the parents of 4 month-old and 10 month-old who just moved into our unit. It's almost suspicious that we've had so many cases of this rare cancer affecting similarly-aged children in the same area at just about the same time.

There are basically three tracks or prognoses that the doctors tell us are possible: a good, bad, or neutral prognosis. They correspond fairly well with genetic abnormalities, which occur in about 50% of people with AML. Right now, they're doing what's called a FISH assay (Fluorescence In-Situ Hybridization) to see what kinds of mutations Andrew's chromosomes have, if any. If he has good ones and responds well to chemo, he'll be put on the "good" track and just do a few rounds of chemo. If he has neutral mutations and responds well, he'll also be on that track. However, if he has bad mutations, he'll have to have a bone marrow transplant, even if he responds well to chemo. Of the people we've met here so far with AML who have been here for several months, one had good genetics, responded well, and is leaving soon (the 2 1/2 year-old). Another had a bad FLT-3 mutation and is recovering from her bone marrow transplant (the 17 year-old).

Andrew has been doing really well. Until today, I hadn't noticed any symptoms from the chemo and he's been a very smiley kid. I think he just gets a kick from having doctors and nurses come in all the time. This morning, though, he woke up with a pretty hoarse voice, which makes his cries sound pretty sad. His platelet count is pretty low (12,000 rather than the normal 150-200,000), so he'll get a transfusion again today. Makes me really wish I could donate blood, so I can add back into the pool.

(This is Joan the Grandma.) Lizzie is still nursing Andrew, so he is getting the best nutrition and the closeness to his mom that he needs probably more than anything for his general well-being. Stew and Lizzie are facing all this as an effective team. Lizzie pretty much has to live in the hospital with Andrew, and Stew keeps them both company when he can.

You would probably like to know that Andrew is finished with two of the chemotherapies of this round. He will finish his Ara-C tomorrow.

We are in debt to all of you for your prayers, cards, calls, and every other sort of support. Primary Children's Hospital provides an exceptionally positive environment with competent, caring doctors and nurses, and support staff. They disinfect this whole room every day, so we feel safe despite all the toxic chemicals going into and out of this baby. The nurses respond immediately when the signal goes off on his IV. The doctors answer questions and explain things thoroughly and kindly.

Love to All! Lizzie, Stew, and Joan

Happy Kidlet

The last day and a half or so has been a really bright spot in all of this. Andrew's appetite is back in full swing and he's jabbering at the nurses, which is fun to see. They're done testing the pH of his urine, so I don't have to remember to put cotton balls in his diaper for them to squeeze out and send to the lab. There's so much to learn with a kid on chemo. I'm going to have to become proficient at changing his central line dressing and flushing his line with low doses of heparin at home. Also, when he's on chemo, they consider every bodily fluid (especially urine) to be toxic waste (as if I didn't already know that), so I need to change his diaper with special nitrile gloves and put it in biohazard.

I'm really enjoying the people here quite a bit. Since you basically live in a public place, you're forced to be a very social person. It's like being in a freshman dorm again, except less privacy. One lady I talked to today is going home with her 6 year old on Friday. He was diagnosed with neuroblastoma when he was 5 (about a year ago), and has done the whole bit--a pretty intense chemo regimen and a bone marrow transplant. He looks fantastic now, though. Another lady I met just a few hours ago mirrors my life almost perfectly. Her kid is 9 days older than mine, diagnosed with the same cancer (2 weeks ago), and she lives on the same street (in the East Village). She's gone through almost the exact same experiences as I have, only her kid had to have a feeding tube, which sounds nasty. The nurses have been telling me that cancer types will cluster--that they see groups of about 3 types of cancers alternate in frequency--and I'm starting to really believe it.

I'm really overwhelmed with all the generosity of people in my family, in my ward, at my old work, and just in this community. So many people have written letters, called, sent emails, fasted and prayed, cooked dinner, and done a whole lot of service for us. We both feel so loved and grateful for everyone's kind thoughts and actions. I'm not used to being on the receiving end of service, and my list of personal needs is pretty short, so I don't really know what to ask for when people want to serve us. However, I really feel like I'm finally starting to reach a new normal and that everything is falling in to place. We love you all and are so thankful for your support as well as the Lord's in our lives.

Doing much better!

Andrew has been perking up quite a bit lately! He's back to his usual refusal to take a nap. At first I thought it was the chemo that has been knocking him out these last few days, but since they've taken him off the oxycontin (a narcotic pain-killer), he's been much more alert and breathing better (he's had blow-by oxygen since his surgeries on Friday). Even being on Benadryl doesn't seem to be putting him out. I guess he's just a determined guy.

So Andrew's not so much of a Michelin Man lately as he's been getting rid of a lot of fluids in the last couple of hours. He was 20 1/2 pounds this morning--so saturated with water that the tech couldn't take his blood pressure! I'm understanding the basis for the over-hydration a lot better now. The attending today told me that for kids with solid tumor cancers (not Andrew), they try to make the intake at least 2 or 3 times the output to protect against tumor lysis syndrome. It seems like Andrew's tumor lysed quite a bit on Saturday night as he was spiking fevers every few hours and having more uric acid and potassium in his blood. His labs are just awesome now--good electrolytes, good urine pH, and there aren't any blasts (cancer cells) in his peripheral blood. The true test of how well the chemotherapy has worked will be shown in his next bone marrow biospy.

Andrew has also finally started to eat again, which is so exciting for us. He's smiled and giggled, which has just been incredible. We just feel so lucky that he's doing so well at this point, although I know there are harder times ahead. I think the wait for the karyotyping, which will weigh heavily on his prognosis, is nerve-racking. Since there is such a strong correlation between chromosome translocations and outcomes for this type of cancer, they will know really well which route to take in about 2 weeks from now. They told us even if he responds really well to chemotherapy, if his genes are bad, he'll have to get a bone marrow transplant. We'll just have to see.

For now, we're just learning the ropes and still praying like crazy for Andrew's health and happiness. Since Andrew hasn't been nursing much at all, I've joined a sort of informal pumping club in front of the NICU (newborn intensive care unit). It's amazing to hear about all these preemies and their parents' experiences. They basically all say the same thing--that babies are resilient. It's the same thing I've heard from doctors and nurses in this unit as well.

It really hit me today something the nurse said when they were giving Andrew his eye drops and this nasty cream for his right eye. She said that she's so glad she works with babies and kids because they forgive you for what you do to them. It's so true that forgiveness comes so easily from children. Inspiring, really.

Anyway, so much more to say, but I'd best be off to bed.

Thoughts

So things have started to slow down quite a bit in the last day or so. After Andrew's surgeries on Friday, he had a pretty rough recovery, but the pain meds and just passing time have made things a lot more comfortable for him. We were so excited last night to hear him babble again, even though he still hasn't smiled for a while.

I was hesitant to let them hit Andrew with chemo on Saturday morning just because he was still pretty weak. He had trouble clearing the fluids they had been giving him, so he went from being barely 15 pounds on Wednesday to around 19 yesterday. His conjunctiva on his right eye were still protruding between his eyelids, and he hadn't eaten for some time, but he has started to get better in all of those areas.

There is so much we're learning about the hospital experience and how life is different for Andrew when he's on chemo. It is a poison, really, so I wouldn't have even thought that I would need to glove up when I change his diaper, but it's standard practice. Also, I wouldn't have ever made the connection that they need to over-hydrate him so that when he starts the chemotherapy, they can clear it well from his system. The nurses have been absolutely incredible. Even when I was a grump at the beginning, trying to accept this new part of my life, they have been so cheery. Our oncologist in particular has been a very happy-go-lucky kind of guy as well. His name is Dr. Barnette, which is actually a very endearing name for me because of my pediatrician growing up named Dr. Barnett. He has spent hours talking with us, telling us what likely outcomes are and what to reasonably expect.

We've asked the nurses a lot about the kinds of experiences they've had treating cancer patients over the years and parents' reactions. One thing that parents have said and I agree with so far is that chemo, although physically trying, is not as bad as they thought it would be. Even though I know that most of the time Andrew is awake he's either in pain or uncomfortable, most of the time he sleeps, which is so comforting to me. It used to be so hard to get him to have just one nap in a day, but now his day is one big nap with occasional interruptions. Thankfully all the draws are through a central line, and he seems to mind his temperature and blood pressure readings less and less.

It's all still so surreal for me. I've taken a step back from my life to see where I am, and it hasn't quite registered that Andrew has leukemia and that we'll be in the hospital for a number of months. Between periods of sleep I wake up, and then I remember. I'm in a hospital. I'm in a hospital because Andrew's got cancer. Is this really happening? I break down every now and then, but then that peace from the Atonement always returns.

Sacrament Meeting today was really, really good. I think feeling sorry for yourself/your situation is a really unhealthy, damaging attitude, and it doesn't take too much looking around to see people who have it so much worse than you. On the flip side, though, it's so inspiring to hear how parents have gotten through their experiences and how much they've relied on the Lord for relief from their suffering. I must admit that having close friends since I've gotten married has been somewhat difficult, but I think friendships with these parents will come a lot easier because we have so much in common. The assessments that we make of other people seem to disappear as you think about their situation rather than appearances. A lot of them have several other children at home miles away, so I can't imagine how they juggle life at home and here at the hospital, but they do. One lady I talked to today just exuded peace. She had such a humble, accepting attitude that was very comforting to me.

Although we miss playing with Andrew, we're looking forward to his recovery at the beginning of next week when he'll have more strength.

Little Trooper

Well today was a long day. Andrew was scheduled for surgery at about 11am, but it kept getting pushed back until it was 1:45pm. The bummer part of this was that he had to fast from 7am on, which made for a long morning. During the morning they loaded him full of fluids and gave him his first of many blood platelet transfusions. We also had a visit by the ophthalmalic surgeon who let us know that the small amount of tissue in the corner of his eye from the surgery was normal and should recede soon. Unfortunately, it swelled up during surgery and is now large enough to prevent his eye from closing properly so they might have to do something about that.

So surgery time finally came around and Andrew had a plethora of procedures done to him. They did a bone marrow aspiration for biopsy, a spinal tap, a spinal injection of chemotherapy, a central line placement, and a testicular biopsy. While he was recovering they also did a heart ECHO. So he is a bit worn out and a little grump some of the time, but for all that was done he is handling it really well. The only other major procedures he has had today is a red blood cell transfusion which he is handling well so far (apparently some kids need blood transfusions every other day, so keep donating blood :) ).

We have found out a little news on his condition. He has M6 AML (it's on Wikipedia), which means that his acute myologenous leukemia has an erythroid (red blood cell precursor) origin. Essentially having M6 AML as an infant with a granulocytic sarcoma and possible testicular contribution means that Andrew is truly one of a kind.

We love him so much, and it's very hard for us to see him in pain, but it makes the times that he's interactive so much more meaningful.

We have a diagnosis

The flow cytometry came back to us this evening confirming the suspected diagnosis of AML (Acute Myelogenous Leukemia). It's been a really rough day. He's getting a boat-load of tests done tomorrow--he's getting a bone marrow and spinal fluid biopsy tomorrow, and while he is under they will also place a central line. He will most likely start chemo tomorrow night, which means that we he will stay in the hospital for the next four weeks then will be home for a week then start another four week chunk of chemo. The chemo regimen will last for the next six months. We appreciate all the prayers in Andrew's and our behalf. We can feel them working. We know that the next 6 months will be difficult but we know that the Lord is mindful of us and we know that he will continue to bless us with strength as we need it. We will probably update the blog with more treatment information tomorrow.

Much Love,

Lizzie, Stew, and Andrew

CBC and other tests

So we're back in the hospital somewhere between oncology and inpatient services. They did a CBC and are doing some more flow to get a better handle on if the cells in his blood are cancerous so they can begin to give us a definitive diagnosis. We're waiting on that for now. His platelet and crit counts are low, so our doctors are worried that it is a leukemia of some sort. He's had some vomiting and diarrhea these last few days (probably from the antibiotic he's been on), so he's a bit dehydrated and receiving fluids. He was on amoxicillin to get rid of an infection (possibly epididymitis), so we went down for another scrotal ultrasound. The attending physician was saying that given his history of a possible cancerous tumor that it's most likely that there are WBC infiltrates in his testicle. Poor kid! We'll hear back on the flow tonight and they'll do a bone marrow biopsy tomorrow. We're holding up well despite all the hard things Andrew has already had to go through. We'll post again when we have a diagnosis.

Still no Diagnosis...

We just got a call from our pediatric surgeon. He had spoken with the pathologist, who gave a preliminary diagnosis of granulocytic sarcoma. This is a very preliminary diagnosis, and they're sending some samples to Huntsman for further analysis. In short, they didn't detect any leukemia or lymphoma surface markers via flow cytometry. He said a granulocytic sarcoma can manifest itself as a tumor when it actually has an origin in the bone, so further testing on Andrew is probably needed (more specifically, a bone marrow biopsy). He also said that the treatment for this kind of sarcoma is systemic rather than local; in other words, they would use systemic chemotherapy and radiation rather than surgery. We're still a little confused about this diagnosis but we'll let you know when they have a diagnosis set in stone.

The Biopsy

This last Thursday Andrew went under anesthesia again so that the surgeon could remove a piece of his tumor for biopsy. The actual surgery took about 20 minutes. He made an incision in the outside corner of his eye, pulled the skin back a little, and debulked a decent bit of the tumor. He said that there was very little bleeding, which means that there was not a whole lot of vasculature around the tumor (most cancers are covered with vasculature). He also told us that the tumor was whitish-yellow, firm and well-defined. Just by physical observation, the surgeon said that the tumor did not look like a normal cancer and that histiocytosis may be a more likely option.

Normally the surgeon sends the sample down to pathology during the surgery and they send back a preliminary assessment within the hour and a full diagnosis within a few days. Unfortunately, pathology had shut down their equipment for the night. Our surgeon was told that they would not analyze the sample until at least Monday, if not later. So we are just waiting and reading about what each possibility involves.

We have appreciated your prayers and support in our behalf. We’ll try to post the diagnosis as soon as we know.

The Diseases

Embryonal Rhabdomyosarcoma

What is it?

Rhabdomyosarcoma is the most common pediatric cancer of the orbit and has mesenchymal origin (muscle, fibroblast, cartilage, fat, etc). There seems to be almost no familial correlation; however, those who have inherited a general oncogene (cancer-causing gene) are more likely to get it. When associated with the orbit, the swelling that we observed can occur over a few days or weeks.¹

Prevalence:

There are about 250-340 cases per year in the United States, about 34 of which deal with the orbit. The mean age for diagnosis is about 8 years old.²,³

Methods of treatment:

Radiation, chemotherapy, surgery.

Survival rates:

Seer.cancer.gov lists children under the age of 5 as 79% survival. Others say up to 94% 5-year survival. However, one group reported that infants under the age on 1 have less than 50% survival (this may include alveolar rhabdomyosarcoma, which is more severe than embryonal).²,³,⁴

(Langerhans cell) Histiocytosis

What is it?

This is a complicated one. It is not technically a tumor or cancer but it acts a lot like one. It can grow in size and metastasize, but the difference is that it is not uncontrolled cell growth caused by a mutation. Rather, histiocytosis occurs when Langerhans cells (a type of white blood cell usually found in the skin) for an unknown reason migrate to a specific site in the body and attack the tissue. This autoimmune pseudotumor often attacks bone. There are obvious problems with this as the inflammation can destroy surrounding tissue. The biggest concern is that, similar to a cancer, it can spread to other organs and inhibit their functions. The prognosis for those with histiocytosis in one location is good while those with multiple affected organs are quite poor. However, sometimes this disease will disappear on its own.

Prevalence:

Histiocytosis accounts for about 1-3% of pediatric orbital tumors.¹

Methods of treatment:

An Australian paper used about 50% surgery alone, sometimes with methotrexate, vinblastine, and or prednisone. Radiation is also used, but less often for fear of secondary tumorogenesis.⁵

Survival rates:

The same Australian paper surveyed 34 patients 6 of whom had a relapse following primary treatment, 2 of those 6 had multi-organ relapse. 30 out of the 34 were alive and disease free, 2 were unknown, and the 2 were the multi-organ relapse, still with disease. The moral of the story is that this disease seems to be the easiest to treat and has the best survival. ⁵

Neuroblastoma

What is it?

Neuroblastoma is an embryonal cancer, which originates from the sympathetic nervous system.

Prevalence:

There are about 650 neuroblastomas diagnosed each year; however most of those are located at sites such as the adrenal gland.

Methods of treatment:

Surgery, chemotherapy

Survival rates:

Seer.cancer.gov lists children under the age of 1 as 83%³

Citations

1. Castillo BV, Kaufman L. Pediatric tumors of the eye and orbit. Pediatr Clin N Am. 2003;50(1):149–172.

2. Shields JA, Shields CL. Rhabdomyosarcoma:: Review for the Ophthalmologist**. Survey of ophthalmology. 2003;48(1):39–57.

3. SEER Web Site. Available at: http://seer.cancer.gov/ [Accessed October 29, 2010].

4. Kodet R, Newton WA, Hamoudi AB, et al. Orbital rhabdomyosarcomas and related tumors in childhood: relationship of morphology to prognosis--an Intergroup Rhabdomyosarcoma study. Med Pediatr Oncol. 1997;29(1):51-60.

5. Maccheron LJ, McNab AA, Elder J, et al. Ocular adnexal Langerhans cell histiocytosis clinical features and management. Orbit. 2006;25(3):169–177.

Monday

As many of you know, Andrew has had a swollen eye since he was three months old. After a number of doctors and several diagnoses crossed off the list, we went in for an MRI and a CT scan this last Monday and were shocked with the news that there is a sizeable tumor covering a large area of his face.

We initially thought he was having an allergic reaction or a blocked tear duct. We were referred from a nurse practitioner to a pediatrician to a pediatric ophthalmologist to another ophthalmologist specializing in ultrasounds and finally to the radiologist who did the scans. For at least a month, we were sure it was a vascular lesion or hemangioma, which is a very treatable condition that usually goes away on its own or can be treated with a laser and/or steroidal injections. Our ophthalmologist told us that an ultrasound on his eye would pretty definitively show us a hemangioma if that was the problem. Andrew was the right age, he had the right presentation, and even the ultrasound seemed to initially point that way. We knew something was wrong when the day after the ultrasound, we got a call from our ophthalmologist's colleague who told me they would schedule the extra scans right away and gave me his pager number.

After the scans, the ophthalmologist told us it looked like one of three things: rhabdomyosarcoma, histiocytosis, or neuroblastoma. We asked him which disease was the most likely candidate. Rhabdomyosarcoma. He gave us his pager number again and told us we should talk to the radiologist. Stew had his computer handy, so he googled 'Rhabdomyosarcoma'. Fast-growing. Highly malignant. 50% 5-year mortality rate. Needless to say, we got pretty emotional after that.

The radiologist showed us the tumor, which extended from near the inside corner of Andrew's eye to the outside corner of his eyebrow and down through his zygomatic (cheek) bone. It reached back into his head past the length of his eye. He also showed us the CT scan showing the bone destruction from the tumor. There was no evidence of it in his brain, and Stew remembers someone saying that the local lymph nodes weren't enlarged. After explaining the extent of the tumor and his observations, he asked where our family was. We told him Ukraine and Indiana, but we had extended family close by. "Do you want to be part of our family?" We thanked him for his kindness. We told him that no matter what happens, Andrew is sealed to us.

Soon after, an Asian man walked in the room followed by a few residents. This was Dr. Kim, the man who was going to do a biopsy to figure out what exactly Andrew has. The radiologist did a quick run-down with this surgeon, who said it would be a simple procedure that he had done before. He took a look at Andrew and told us that the incision would be small, almost unnoticeable, minimal scarring. This was honestly the last thing on our minds. He soon left and we were left with Andrew.

Even a few days later, the details of the next few hours are fuzzy. We did a lot of praying, singing hymns, and Stew began his fast. We started to read in Alma 2 where the sons of Mosiah are teaching King Lamoni's father about God. We came upon one of my very favorite verses where his Father is praying, "O God, Aaron hath told me that there is a God; and if there is a God, and if thou art God, wilt thou make thyself known unto me, and I will give away all my sins to know thee." We realized that we had two choices--that we could either curse God, lose our testimonies and become embittered by this experience or we could turn to God and repent and find peace despite our adversity. We would certainly need to repent in this experience by turning our minds and wills toward God.

We know that we as his parents are able to do very little against cancer. We would need to put Andrew into the doctor’s hands, but really, we would need to put him in God’s hands. It was a comforting thought, imagining Andrew being taken care of by much more capable hands, as he is so close to God. We thought a lot about how much God loves Andrew, so much more than we do. After many hours of prayer and a priesthood blessing from the bishop, we both eventually felt and have clinged to the peace that comes only from the Atonement of Jesus Christ. We don’t know what will happen next, but we know that if we put our trust in God, things will work out.