Andrew was diagnosed with Erythroid (M6) Acute Myeloid Leukemia on November 4th, 2010 when he was almost 5 months old. Andrew is currently in remission from his cancer, after finishing his 5 rounds of chemotherapy. He is a healthy, happy toddler.
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.
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.
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.
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:
-Loss of appetite
-Nail beds that may change color and texture
-Abnormal liver function
-Irritation to eyes
-Low Blood Pressure
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.