Lifting Up Serenity

Diagnosis is in – she has Leukemia

This is the Day 2 post of my baby, Serenity, being diagnosed with Leukemia. Day 1 is here.
It’s been a Bad news, Good news kind of day.

The bad news – our baby has Cancer. The good news – she’s most likely not going to die.
The bad news – she’s looking at 2 1/2 years of treatments. The good […]

This is the Day 2 post of my baby, Serenity, being diagnosed with Leukemia. Day 1 is here.

It’s been a Bad news, Good news kind of day.

The bad news – our baby has Cancer. The good news – she’s most likely not going to die.

The bad news – she’s looking at 2 1/2 years of treatments. The good news – she’ll most likely be around to have them all.

The bad news – she starts chemo-therapy tomorrow. The good news – her type of Leukemia can be treated as an outpatient.

The bad news – she’ll be in the hospital for 7 more days. The good news – after that she should be pretty much back to her old self.

The bad news – she has to have blood drawn and intra-venous treatments a LOT over the next 2 years. The good news – she’s going to have a port catheter installed tomorrow so no needles after that!

The bad news – she has A.L.L. Leukemia (which has an 80-90% remission rate). The good news – she doesn’t have A.M.L. Leukemia which can kill in 24 hours to 90 days and has low success rate for treatment.

You know what? It really sucks having to accept the fact that your baby has cancer. But once that’s done, there are silver-linings to that dark, dark cloud. It makes a HUGE difference just KNOWING. I was a total wreck the first 24 hours, now that we know what it is and what the chances and options are, we’re able to build action plans. I’ll tell you what, after the last 24 hours, it’s REALLY exciting to make plans for Serenity that are 2 and a half years down the road. Making those plans for her means that hopefully she’ll still be with us. It means we can fight this thing, we can start strategizing and making battle plans to wage this war.

It feels kind of like a startup company, which I’ve been doing for the last 18 months anyway, it’s familiar territory and I feel kind of comfortable here. Just like a startup, Serenity’s plan involves risk – a lot of risk. But there’s a huge reward and it’s very much worth time, effort and money. Going into this we have no idea how much money it’s going to cost but it’s got to be done and we’ll figure that out as we go – just like an early stage startup. The point is, I feel like I can do this, I’ve been doing it for a long time.

Tomorrow marks the begining, everything so far has been about stabilizing her and getting her blood straightened out. All her counts are much, much better. We’ve been working with her potasium levels today. They were the last thing that was really out of wack. Now her blood (after two transfusions and 2 bags of platelletes) is pretty low, but it’s within functional and operatable ranges.

She was feeling a bit better today, she played baloon bounce with me and actually laughed for about 5 minutes. Then her burst of energy gave out, she laid down and went to sleep for several hours. She played around a bit more and then crashed. They tell us that once she adjusts to the chemo and steroids that she’ll be her normal self pretty quickly. That’s very exciting to me – Serenity has been my little tag-along buddy for the last year. She is VERY much a Daddy’s girl and does most of the things that I do, especially if it’s around the house or in the mountain. She’s my little buddy and traveling companion and I can’t wait to get her back out in the mountains where she is happy beyond belief. As I’ve sat with her here in the hospital, not knowing what she had or what her chances were, I reveled in knowing that in her short time with us this far, she has been very happy and has had some wonderful experiences. Now that we know she will very likely get plenty of time with us still, I plan to make sure that that happiness continues. I think I’m going to plan a wellness party for her up in the mountains, next to a big river where she’ll run and laugh and just love being alive. I think we’ll do that for sure as soon as she is up to it.

I’ve been working on this post most of the day, things are very busy here and there are lots of interuptions – many of them welcome. Several friends and family have been up to visit us and it’s been nice seeing them. Thanks to all those who have expressed love by either coming up, sending messages or commenting on the last blog post. We really do appreciate the love and support we’ve been receiving. I took a few videos of Serenity playing around today but I can’t upload them to YouTube, I think they must be blocking uploading or something. By the way, Primary Childrens Hospital has free wifi available and we’ve really appreciated being logged on most of the day.

I’ll be posting more updates tomorrow after she has been to surgery.

UPDATE: Day 3 is here.

Definitely leukemia

Acute Lymphocytic Leukemia = the “good” kind
She will start treatment tomorrow night, most likely.
She is feeling a bit better after the blood transfusions.

Acute Lymphocytic Leukemia = the “good” kind

She will start treatment tomorrow night, most likely.

She is feeling a bit better after the blood transfusions.

My baby is in the hospital

It’s funny how much life can change in 24 hours.
Yesterday we took Serenity in to see the doctor because she’s been feverish and lethargic for the past few days. She had a runny nose and a cough, and it really just seemed like a cold, but I was concerned that she didn’t seem to […]

It’s funny how much life can change in 24 hours.

Yesterday we took Serenity in to see the doctor because she’s been feverish and lethargic for the past few days. She had a runny nose and a cough, and it really just seemed like a cold, but I was concerned that she didn’t seem to be getting better quickly. While we were there we mentioned to the doctor that she has had a lot of bruises over the past month or two. Her bruises are mostly gone but at one point she had dozens of them and it appeared that they had been caused by the pressure from our fingers picking her up and lifting her, which seemed unusual. I didn’t really think it was anything but wanted to be sure. The doctor ordered a complete blood panel and said that while it wouldn’t check for everything, it was a good place to start to rule out something like leukemia.

Just as we’d debated the necessity of taking her in to see the doctor, we discussed whether to do the lab work that day or put it off until a later time. We decided to go ahead and get it done while we were there (about 30 minutes from home). We were on our way home from the appointment, on the freeway, when we got a call from our pediatrician that Serenity’s lab work was starting to come back and she wanted us to turn around so that Serenity could be admitted to the hospital. The doctor said she would meet us at the ER so that Serenity could start getting fluids while we waited for the rest of the lab work to come back, and then we would discuss further plans.

When we arrived she told us that they would be transferring us to Primary Children’s Medical Center in Salt Lake City. It’s a great hospital, but it is about an hour and a half from home. I rode in the ambulance with Serenity and Phil went home to pack a bag for our stay and arrange for someone to take our other children. Before we left the doctor said that Serenity’s lab results looked like there was a possibility of leukemia.

When they were loading her into the ambulance the paramedics informed me that I couldn’t ride in back with her. I got a little bit hysterical because I thought she might die all alone and I couldn’t bear the thought of not saying goodbye. There were quite a few moments yesterday when I panicked a bit at the thought of her dying without me being prepared for that. But she did ok in the ambulance and so did I.

Yesterday was a whirlwhind of blood draws and tests and doctors and numbers. I started hearing the word Leukemia more and more, and although they haven’t given us a definitive diagnosis yet, that’s what everything is pointing to, and that feels like it fits. My close friend followed me up in the ambulance and spent most of the day with me yesterday, explaining procedures and answering my questions. She is the office manager for our pediatrician and has several medically fragile children and has just about earned herself a permanent parking spot at Primary’s, so her help and support was invaluable to me yesterday. If I had been alone I know it would have been much harder to process.

The doctor here has started Serenity on two medications, an antibiotic for her pneumonia and ear infection, and a drug that helps break up the uric acid in her system so as not to put a strain on her kidneys. The nurses have been drawing blood every 8 hours and we’ve been very fortunate that so far they’ve been able to do it through Serenity’s IV lock so she has only been poked a few times.

She is very unhappy with the situation. If anyone tries to touch her or lift her arms she screams, “All done!” to let us know she doesn’t want to be touched. As heartbreaking as it is, she is learning what to expect when they come in to do her vitals and she is sick enough that she is sleeping any time she’s not being poked or prodded. Last night she was given platelets and blood over the course of several hours and her numbers have come back up, better than expected, so if her flow cytometry results come back with the expected result the doctors expect that this afternoon she will have a bone marrow biopsy, a spinal tap to check her cerebral spinal fluid, and put in a central line of some sort to assist in blood draws.

So, here we sit waiting in her room on the Immuno Compromised Ward, waiting for the flow results so we know what the next step is. The biopsy will give the definitive diagnosis and then we will be told about treatment options.

Very sick baby

Some day soon I will type out my version of Serenity’s story, but you can read Phil’s version here.

My baby might have Leukemia

CANCER: One of the words no parent ever wants to hear from their child’s doctor.

CANCER: One of the words no parent ever wants to hear from their child’s doctor.

Well, we heard it today. Our baby, Serenity, who is 22 months old (she’ll be 2 in July) probably has Leukemia – and if it’s not Leukemia the doctors say it is something just as bad, if not worse. The last 12 hours have been an intense and crazy whirlwind of events, emotion and travel. Here’s the story:

The background: About 3 weeks ago, we noticed that Serenity was covered with bruises. They were all up and down her spine and her legs were covered with them. It looked like someone had jabbed her with a stick, really hard and over and over. Needless to say, we were concerned and we were very upset as we believed at first that one of our 7 other children (we have 8 kids) had done something to her. They all vehemently denied doing anything and that night as I was changing her diaper and holding her legs, I noticed that my fingers were covering many of the bruises on her legs. Further examination showed that most of her bruises mapped to finger placement when holding her. We realized that Serenity bruised very easily, this was the first time this had happened. We watched closely to see if new bruises showed up, none did. In fact, the bruises she had cleared up over the next week. We decided it might be a fluke and have kept careful watch, no new bruises have shown up.

This past Sunday she came down with a fever and a slight cough. While we were at my Mother’s on Sunday, several people (including us) noticed that she looked pretty pale. We chalked it up to her fever and being sick. Monday she wasn’t much better, her fever hit around 103 but once we gave her Motrin it went down. Over the next two days we were able to control her fever with Motrin but on Tuesday night we started talking about taking her to the doctor. Wednesday morning she seemed like she was doing better – and we called off the visit to the doctor. By Wednesday evening she was having it a bit rough again and the discussion of the previous day was repeated – as was seeming a bit better on Thursday morning. So on Thursday, we put off going to the doctor again. Thursday night was rough and Friday morning (this morning) she wasn’t any better, in fact she seemed worse. We noticed marks showing up on her face – they weren’t bruises but were rather strange. We called the doctor and got an appointment for 11:20.

11:20 – We go to the doctor’s office and they check her out. After discussing the bruising and looking at the new marks, the doctor orders a CBP – Complete Blood Panel. He gives us a prescription for anit-biotics because he finds she also has an ear infection. He then tells us that one of the things he wants to rule out with the CBP is Leukemia, things become worrisome.

~12:15 – We go to the blood lab at American Fork Hospital and have blood drawn, this doesn’t take long and we head home to Mapleton.

~1:20 – We’re between the Center St and University Ave exits on southbound I-15 and the doctor calls. She says that she has half the blood work back and it is EXTREMELY abnormal. We need to immediately turn around, bring Serenity back and have her admitted to the ER.

~1:40 – We’re back at the ER and the doc has already admitted her. They start explaining what’s going on. Her blood is BAD. Her platellete count should be 200, it’s 5. Her white blood cells are made up of all the wrong things, her red blood count is really low. They tell us they are going to medi-vac her to Primary Childrens Hospital in Salt Lake via ambulance and they will be monitoring her vitals, if the drop they will call in a helicopter.

~1:42 – I’m scared to death and freaking out, so’s my wife. The Doctors tell us that if we had waited through the weekend, she probably would have been near death.

~2:00 – Serenity is loaded into the ambulance, in her car seat which they have strapped to a stretcher. They will only allow one person to go and they have to sit in the front. Adria rides with them. I’m told to go home and pack bags for Adria and I – for 3 to 5 days. I also need to get the kids farmed out.

~2:15 – My Mom is coming over, so’s my sister. I’ve talked on the phone to several family members and they’re springing into action. I’m totally losing my composure by now. My Mom shows up with my sister and they start confusing me with a simple discussion of what to do with my kids. I tell my sister to please deal with it, I’m going home to pack.

3:30 – I’m home, I explain to the other kids what is going on. I tell the 3 older kids about the possibility of Leukemia. Adria’s sister shows up to take the kids to their farmout assignments and leaves. I get packed and head to the hospital.

6:00 – I get a phone call that the Cancer ward at Primary Childrens has said that there is a 90% chance it’s Leukemia. They’re planning several tests and they have to give her all new blood.

7:30 – I get to the hospital.

Since then, they’ve given her a bag of platelletes, a bag of new blood (it’s almost finished) and broad spectrum antibiotics and something to keep Leukemia blood from destroying her kidneys. We’ve pretty much accepted that it is Leukemia. We’ve cried a lot and learned a lot. There are 2 main types, one has an 80% recovery rate, the other is much lower. We’re hoping for the one with 80% recovery. They rattled off a list of what it could be if it’s not Leukemia. I don’t remember any of them but they sound nasty.

Tomorrow morning they are going to do several tests that they can’t do tonight. Depending on the results of those, she’ll have to have a bone marrow biopsy tomorrow night for which they’ll give her general anesthesia. By tomorrow night we should know for sure whether she has Leukemia and if she does, what strain it is. Once they know, they can start treatment. Treatment (as most people know) is going to be ugly. It’s going to be a rough weekend.

I Twittered most of what went on today. There was a huge outpouring of support, committment to pray, and love. I saw them coming in but didn’t have time to read them all until just recently. After the events of the day, it was really nice to sit down and read through all the well-wishes. Thank you to all of you from the bottom of my heart. I’ve also received several emails of support, some from people I don’t even know but who know what we’re going through. Thanks to them as well, I’ll try to respond to all those in the next day or two.

The staff here at Primary Children’s has been great! They’ve been extremely helpful and accomidating. It’s been an exhausting day and I’m sure it will just continue through the weekend. I’ll be blogging more as things develop. Thanks again to everyone who has offered support and expressed concern. We truly appreciate it.

I’ve been and will continue to post pictures to my flickr stream – you can see it here.

UPDATE: Day 2 is posted here