This is the Day 2 post of my baby, Serenity, being diagnosed with Leukemia. Day 1 is here.Â
It’s been a Bad news, Good news kind of day.Â
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.Â
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.Â
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.Â
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.Â
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.Â
I’ll be posting more updates tomorrow after she has been to surgery.
UPDATE: Day 3 is here.
The story of Serenity’s battle with Leukemia begins here.
19 comments
Skip to comment form ↓
Erin McMahon
May 24, 2008 at 10:57 pm (UTC -7) Link to this comment
She’s beautiful. : )
I’m very glad for your silver linings.
Sending positive thoughts out to you all.
- Erin
Karoli
May 25, 2008 at 12:15 am (UTC -7) Link to this comment
I found your posts via Robert Scoble’s shared items in Google Reader. A dear friend of ours is going through the very same thing with his Down’s syndrome son. The good news? Children are really much more adaptable to adverse events like this than we think. The bad news? It’s harder for parents to adjust, but then there’s also the silver lining, as you say, of understanding the action plan and knowing the odds are in your favor.
I will keep your beautiful child and family in my prayers. I have faith that she will come out on the other side as stronger and somehow specially blessed as a result of her battles in the next couple of years.
Elizabeth
May 25, 2008 at 12:17 am (UTC -7) Link to this comment
Hi, I heard about your daughter through Robert Scoble’s blog and I’m so glad she’s going to be okay. I sincerely wish you and your family all the best during this difficult time, and I’m sure Serenity will really appreciate the love and support you’ll give her while she goes through her treatment.
Elizabeth.
Rob and Kierra
May 25, 2008 at 12:36 am (UTC -7) Link to this comment
Hey guys. We just wanted to let you know that we are thinking of and praying for you all. We are so relieved to hear that it is ALL and not a number of worse things. If you need anything, or just feel like talking, give us a call–we didn’t want to add to the chaos by calling in the midst of this, but we love you and are here if you need us. Give that beautiful baby girl kisses from us and her cousin Ainsley.
Ryan Willis
May 25, 2008 at 12:42 am (UTC -7) Link to this comment
I’m so sorry to hear about all of this. Good on ya for keeping positive. Our prayers are with you.
Tony & Nedra Hayden-Smith
May 25, 2008 at 4:31 am (UTC -7) Link to this comment
You are all in our thoughts and prayers. God Bless You Serenity. Love from the Australian Hayden-Smith Family
Todd Gordon
May 25, 2008 at 5:51 am (UTC -7) Link to this comment
I definitely recommend getting in contact with your local chapter of the leukemia and lymphoma society.
http://www.leukemia.org/hm_lls
It’s a great organization and offers support on treatment, patient comfort, family counciling etc.
Robert B. Morshe
May 25, 2008 at 6:00 am (UTC -7) Link to this comment
My prayers are with your daughter and you. I know she will do just fine and this will be behind you all.
isle
May 25, 2008 at 6:00 am (UTC -7) Link to this comment
Your daughter is beautiful, reminds me soo much of my own. Your blogging on this difficult subject is excellent, and appreciated. Wishing you the best, and strength to you all.
(A note from another random Twitter stranger- having coffee on Sunday morning at my kitchen table here on PEI,with tears in my eyes, a smile for your baby girl and a hug in my heart for you and her mom and the bigger kids.)
Deb Dib
May 25, 2008 at 9:12 am (UTC -7) Link to this comment
What can I say? Words are never enough when your child is so very ill.
I feel a sort of kinship with you, connected by similar exxperiences. Many years ago, as the oldest of nine kids, I cared for 7 siblings for months while the 9th ( a baby sister with Downs Syndrome) was 6 months old in the hospital and my parents almost lived there. I was 19 and remember the terror of not knowing what it was, and then the fear that came with knowing what it was. Luckily, Amy survived and thrived and is a happy productive adult.
Many years later, as adults, we lost our mom to the fast-moving AML leukemia. If anything about this can be good, as you’ve said, It is so wonderful that Serenity has the treatable kind!
I feel so much for you, and your wife and children. Having come from a large family, I know the blessings that brings. I also know it’s commitment, hard work, and love all rolled in together. That love will sustain you all as you go through this. And your children, as frightened as they likely are, will rally around Serenity and each other. That’s another silver lining.
I’m looking at your pictures on your blog posts and trying hard not to cry. I’ve sent an email out to my family (some 30+ strong) — we’re all praying for Serenity, and her parents, brothers and sisters.
Corrie
May 25, 2008 at 9:47 am (UTC -7) Link to this comment
Glad to hear the good news. You might want to talk with Chad’s friend (his daughter just got done about a year ago with her own ALL treatments and is back to her darling self)
We love you both and pray for many more silver linings
Phil
May 25, 2008 at 9:52 am (UTC -7) Link to this comment
Marina Martin at Oh Twitter directed me here.
You sound like a very positive, strong & loving father. I imagine this is a difficult time for you, but it looks like you already have within you the healthy presence that your daughter deserves to have.
There’s a caring community to reach out to, so use it wisely (and make friends with the sharp nurses). I wish you, your daughter and your family every blessing.
Mary Wallace
May 25, 2008 at 2:36 pm (UTC -7) Link to this comment
Wow! Before you got diagnosis, I didn’t want to add this in to our twitter convo, but a dear friend of mine just turned 12 and ended the year long intensive part of her leukemia treatment, had a dance birthday party at her house. Single mom, two older brothers who suddenly lost family system as mom and daughter moved into and out of hospital. Lots of love around, I’ve driven the boys, brought meals or given restaurant gift cards, and the scariest year of their lives has passed. Time, my friend, just be in the moment with such a wise little angel and time will pass. She will be in her teens, looking at you sideways as though you know nothing about being cool, and you’ll realize you’ve lived thru the moment to moment fear. Love to you and your family!
Jason (Jayce^) Hall
May 25, 2008 at 4:01 pm (UTC -7) Link to this comment
If you feel like you need an out, contact your local “Team in Training” group (http://www.teamintraining.org/), they do fund raising for leukemia research. My wife did a marathon with them a few years back, and it was a great group to work with.
Also, if you ever need to go relieve a little stress yourself, we still need to go shooting
francine hardaway
May 25, 2008 at 4:04 pm (UTC -7) Link to this comment
One of my best friends is a pediatrician and treats kids with cancer. Very good chance of success with what your daughter has, and she’s young enough that she won’t be in school and marked as “different” during her treatment. You are absolutely right about your ability to handle this — it’s the uncertainly that’s the worst. There are lots of online support groups for parents of kids with cancer, too. I think one of the sites for young cancer patients is called something like tooyoungforthis.com
I’m totally in your corner. Lost two husbands to cancer, and now live every day to the fullest. But your little girl has a very treatable kind. Lots of luck and love to you.
Blake
May 25, 2008 at 6:23 pm (UTC -7) Link to this comment
Glad to hear it’s the lesser of two evils, Phil. Both my wife and I send our best to you and yours, especially Serenity.
Chris and Abby Studdert
May 30, 2008 at 11:27 am (UTC -7) Link to this comment
We are thrilled it looks like Serenity is coming home. Along with our Children we have kept you, the family and especially Serenity in our prayers – and will continue to do so. God bless!
Deanna Deutsch
June 19, 2008 at 8:14 pm (UTC -7) Link to this comment
Hi – my name is Deanna Deutsch and my 5 year old daughter Frankie was diagnosed with A.L.L. when she was 26 months old. I found your site through ALL Kids, of which I am a member. I was reading your blog and am reminded of our first horrible months of dealing with leukemia. I wanted to write and say how sorry I am that you are living this particular nightmare, and give you our website (www.caringbridge.org/wi/frankie) because when I was in your shoes, I liked reading other’s sites so I didn’t feel so alone. I know how impossible it is to believe that you will get through this, that your baby will be the same, that you will be happy again – and perhaps reading someone elses similar journey will give you hope. Frankie went off treatment in November, and is doing great. Anyway, this is all I can think of to help – to show you a family who has walked in similar shoes and come through in tact. It always gave me hope to see that so I hope it does the same for you. My prayers are with you and your family.
celestine
December 8, 2008 at 8:49 pm (UTC -7) Link to this comment
she’s so beautiful… by the way im celestine
im a nursing student… before my college
graduation this year i was diagnosed with CLL (Chronic Lymphocytic Leukemia) yeah… im only 20 years ill be having my chemotherapy soon.. ill pray for your daughter for her quick recovery.. My prayers are with you and your family. everything will be okey soon… this only a trial…