Enjoy the little things, for one day you may look back and realize the little things were the big things. ~Robert Brault

Sunday, March 13, 2011

The Phone Call You Never Want to Get

**Friendly reminder: I'm the mom. I get to put in as much detail and as many useless facts as I want. My journal. :) **

Carter is our oldest son (and only son, actually), a sweet 5 1/2 year old boy. A few weeks ago, we noticed that Carter was getting tired really easily and was starting to look pale (which is really saying something since his complexion is normally already very Casper-the-Friendly-Ghost like). He was also complaining of stomach aches and random pains in different parts of his body. His doctor thought that they might be Abdominal Migraines (we hadn't ever heard of them either) and started him on some medication. The medication (at least we thought it was the meds) were making him even MORE tired. It was ridiculous. His teacher talked to me about how he was always so sluggish, he was falling asleep at his friends houses (SO unlike him), he couldn't wait for bed time, he wouldn't join in on my dance parties with the kids... things like that.
His doctor asked to see him immediately, gave him an exam (a quite thorough one) and ordered some tests. During the exam he was asking us some very random questions ("Has he been waking up in the middle of the night?" Ummm... a little bit which IS strange for him. "Have his lips been fuller than normal?" Actually, yes. I had even commented to Bryan about that.) The doctor, who we just adore, assured us it was more than likely anemia and nothing more. While examining Carter he had spent WAY too long feeling around his arm pits. Of course the first thing we think is "lumps". I asked him why he was lingering there and he said he felt some VERY small masses. They were small and kinda squishy so they were more than likely nothing. He said if he wasn't looking for them specifically he wouldn't even have felt them. But he did have some reason for concern so he ordered tons of tests. We, of course, worried of the worst case scenario. After a lot of time waiting (it was only 6 or so hours but that's a LONG time when you're scared) we had to take Carter to get MORE blood drawn.
By this point it was 4 in the afternoon and we were very worried we would have to wait through the weekend to find out what was going on since the pediatrician closed at 5. We were worried it was something serious... you know, like mono or pneumonia. (If only!!) Dr Kim (the ped) called a little after 5:00 and said he should know within the hour what the results were but that they had crossed off bone cancer and liver problems. That's good, but scary they were looking at things so serious. He had given the lab his cell phone number and had my number in his phone.
About 6:30 the doctor texted me and said the lab was rechecking something but he should know within the next 30 minutes or so. I, once again, started to cry. Why on earth would they need to recheck normal lab results. Obviously something wasn't right. He finally called me a VERY long hour later (while Bryan was at Costco of course) with the news. He was 98% sure. He was SO sweet while talking to me. (What a HORRIBLE call to give!) He had been on the phone with the oncologist (whom he kept calling the hematologist- she's both- I think as to not further scare me) and with the hospitals all over Colorado Springs trying to find a bed. He sent us immediately to the closest one with an open bed and told us to cancel our trip to California next week. He then asked me if I was religious and prayed with me over the phone. It made me love that doctor that much more. (He had BIG shoes to fill after my super awesome doctor in AZ.) The fact that he didn't care if it was breaking doctor rules was so great to me. He just wanted to comfort a crying mother who had just received some very heartbreaking news.
After being a human pin-cushion over the next 24 hours, Carter was officially diagnosed with leukemia, specifically pre-B cell Acute Lymphoniblastic Leukemia. (A.L.L.) Of all the kinds of cancers, this is the "best" one. We were obviously devastated, as all of the worst-case scenarios flooded our minds. It was the beginning of a very scary journey. Thanks to some wonderful doctors and nurses, our minds were put a little at ease as they informed us that of all the types of leukemias, Carter has the most treatable and curable form.
They taught us that leukemia, unlike solid cancers, is cancer of the blood. That means it is everywhere almost immediately (they think he's only had it two weeks or so), which makes early diagnosing and treatment very important. Carter's bone marrow, which usually makes all of his blood cells, was malfunctioning and only creating a type of white blood cell, B-cell, at a very rapid rate. So rapid in fact, that those types of cells took over the blood producing marrow and Carter was unable to produce oxygen carrying red blood cells, platelets that help with clotting, infection fighting white blood cells, etc.
After a few platelet and blood transfusions, (and a formal diagnosing) Carter was taken to surgery where he was given a spinal tap, had a bone marrow biopsy (NOT transplant) from his little hip, and had a port placed in the left upper part of his chest, that will remain there for easy chemo treatments for the next few (2-3) years. This is the point we are at now. (It is SO strange to think that a little over 48 hours ago our lives were 100% different. 48 hours ago I couldn't even spell leukemia.-- although I bet Bryan could. He's quite the smarty pants.) The chemotherapy should begin to work immediately, and in the next week most of the cancer cells should be dead or dying. However, because leukemia goes wherever there is blood, which is just about every square millimeter of your body, it is very difficult to get rid of it completely without lengthy chemo treatments. So, the next 6 months will be a very intensive chemo regimen (during which Carter will lose his hair- hat time!!) followed by 2-3 years of maintenance chemotherapy. He will start losing his hair in a few weeks and be pretty darn miserable for the next 6 months. (And we hear we will too with the steroids they will be giving him. Turns him into a major crank, I guess.) But, obviously this will all be worth it to have our healthy little boy back. It's strange to think that when he finally gets this port out of his body he will be preparing to be baptized... that seems SO far away.
Carter has been a real trooper. Aside from a few rough hours after surgery, he's been in good spirits and has been soaking up all the cute nurses and TONS of attention he's getting. He has borrowed a DS, watched movies on the iPad, watched Star Wars with Daddy late at night, gotten shakes, cookies, treats (as well as healthy food), and played countless games with Mom or Dad- one of which is always with him. This has obviously not been a fun experience for him, and will only get worse before it gets better, but he has had a pretty good attitude through it all, at least for a 5 year old with cancer. :) We are so blessed to have in our family. We know that this will be a learning experience for us all, and that we will grow closer as a family and closer to our Savior and Father in Heaven through this.
We are absolutely amazed and blown away by the amount of support, prayers, thoughts, and fasting we have received the past two days. Our inboxes are literally busting at the seams.
Our prayers are FULL of things to be thankful for. We are SO grateful my girls and Bryan and I are healthy. We are so grateful Carter is getting the help he needs. We are SO grateful for those kind souls that donate blood and platelets. We are so thankful for modern medicine. If this was 40 years ago there would have been NO hope. We are so grateful for perfect strangers that are praying and fasting for a little 5 year old boy they have never and more than likely will never meet. We are grateful for facebook! The word spread so fast through facebook which allowed so many more people to keep our little fighter in their prayers.
We have definitely asked the question "Why?" through this. But not with anger. We wonder why the Lord has given us this challenge. What are we suppose to learn here? How are we suppose to grow in order to learn what the Lord wants us to learn. One thing we know for sure is that the Lord will NOT give us something we cannot handle. We are going to kick the crap out of this cancer! A few weeks ago I was listening to an old friend tell me about her 5 year old nephew with cancer. I said to her, "I don't know how your brother and sister-in-law do it. That would literally kill me... watching my 5 year old suffer through cancer." (should have knocked on wood, I guess.) But, with the Lord's help, all is possible. I've been taking pictures (some are on facebook) and when I have a chance to get home for longer than a few hours sleep and an occasional shower, I'll upload some.

Things I never thought I would say that have come out of my mouth over the last 48 hours:
~I hope it's just pneumonia.
~My son has cancer?
~I'm so glad it's just Leukemia.
~This could be SO much worse.
~Let's dye Carter's hair blue!! It's gunna fall out anyways.
~MAKE A WISH!?!? We get to apply for that? AWESOME!
~Do you think if we took Carter to Disneyland while he's still bald that they'll let us cut in front of everyone on all the lines? We should really look into that.
~"Hey Bryan, did you ever think we would spend our 8 year anniversary in the hospital room of our little boy with Cancer?" His response "Yep. I've been imagining this day since I was a little boy." (goofball)
~Man, having a kid with cancer really helps me take off those last few pounds. (Lost 3 already.)
~Our child WILL be a cancer survivor.

Thank you everyone, once again, for the countless prayers. We can say without a shadow of a doubt, the prayers are the reason we are getting by. Our testimonies have only grown (not as fast as the cancer, but pretty darn fast!) and our Savior is near by. This is one of those times that He is carrying us, and we truly appreciate it. Our Father in Heaven loves our Carter as much as we do... and we will never ever doubt that. Hug your babies a little longer today; life changes quickly.

42 comments:

Unknown said...

Beautiful. You are all so incredible, a real example to me. I love you!

HEIDI said...

Thank you for this inspiring message...You are so strong and amazing Jen, and Carter and your whole family are in my prayers and will continue to be...Hugs to you!!

Unknown said...

Golly, that was AWESOME! See I told you, you should write a book! What a brave lil guy. I mean it when I say I have been consumed by this. several times throughout the day and night I tear up and cry. I KNOW Carter is going to kick the crap or if this disease, just wish the road wasn't so long for y'all. Jen, you're nothing short of extraordinary! keep up the brave fight. When you are feeling down, read all the comments again and know we all are here. We are. Natalie is right when she says speak up, you're his # 1 advocate. He's lucky to have you. 1 more thing, I cared for a woman in her 50's her name is laura. She had stage 4 leukemia when they caught it. She went thru chemo and radiation so intense it turned her skin blackish. Her hematologist/oncologist prescribed her laughter 15 to 20 mins a day, true belly laughter. Even on her darkest day. She did! She fought like heck and laughed. She's doing great today. Just wanted to share. The Dr who prescribed the laughter is Dr. Carrier UCSD cancer center. (just for reference) I am thinking of you all, so much

Jessica Simonsen Howard said...

You are an amazing woman Jen. I don't know if you remember me, but I just want you to know that your family will be in our prayers. You guys have a wonderful perspective on this whole experience.

Claydens said...

you are in our prayers. i am so glad it is the "best kind of cancer to have"hang in there Jen and Bryan you two are awesome!

Melissa said...

Hey Jen, Your strength is amazing and we are keeping you all in our prayers!!

tollestrupfamily said...

I love your raw honesty and feelings. It makes me feel like in some way we are all there in spirit with our arms around your family. We have mentioned him in every family prayer since the news. This is one lucky boy to have such an amazing Mom that has touched so many and now in return we all pray for the amazing little boy of one amazing mother. We love you all!

Kristen said...

Oh Jen! My heart just breaks every time I think about what you guys are going through. You are amazing! We are keeping you all in our prayers! Let Carter know that we love him and are cheering him on!

bethany said...

You are amazing Jen. What a wonderful positive attitude. I know there are moments of sadness, but your good attitude and the Lord will get you through this. Thanks for sharing your story and faith. It is truly inspiring. Isn't it amazing the strength that the Lord gives during trials?

Kim said...

Last night Hannah said family prayer. She asked Heavenly Father to bless Jacob. Afterwards she said, Mom, I just couldn't remember Carter's name, but I knew that Jesus would know who I was talking about and He would make sure to bless Carter. We are always here if you need anything.

Ruth P said...

You are an amazing woman. Little Carter has been in all of our family prayers since we heard. Know that Arizona is sending tons and tons of prayers your way!

The Prigmore Family said...

I love you.

Shannon said...

Jen,

Thank you so much for sharing your story. Your family is strong and can beat this! You are in our thoughts and prayers. Give Carter a hug and a kiss from us.

Love,

Shannon

Ashby said...

You are such an inspiration to me in so many ways! Carter is so lucky to have you as a mom. He's going to get through this. We're praying for you!

Jocelyn said...

I'm amazed at your strength Jen. That was beautiful and inspiring to read. Every complaint I've heard the past few days all I can think is that it could be worse...and you're also saying that?! You're incredible! Carter is a lucky little boy to have you as his mom! Keep updates coming because you're all on my mind constantly. Glad his surgery went well. Love you!

Valora Hintze said...

I just found out about your sweet little guy! You have amazing faith and are a wonderful example to me. Carter will be in the Hintze family prayers.

Valora Hintze said...

I just found out about your little guy. You have so much faith and are a great example to me. Carter and your family will be in the Hintze family prayers.

The Upchurch Family said...

I'm not on blogger very often anymore, but my mom told me you had posted. I cried when I heard the news Friday night, but I am so optimistic for Carter's outcome. We love you guys so much and have been praying for you every day. Attitude is everything, so I think it's great you guys are staying so positive. Please, please, PLEASE don't hesitate to call, text, e-mail, or facebook (or fax, ping, or tweet :o)) us if there is anything we can do for your family! We LOVE you so much and wish you the absolute best for the tough road you have ahead. Go Carter, go!!!

The Upchurch Family said...

p.s. Tell Carter "Ooh-rah!" from Uncle Mike. ;o)

KatieB said...

hey jenny, i just found out. i loved your post and my heart aches for you for this new trial you are facing. our prayers are with you guys and i know that, combined with your spunk, optimism, and sense of humor will get you through this. love you!

Smith Family said...

I am in tears right now and my heart just aches for you! What amazing faith you have. We'll keep praying for your little Carter and the rest of your family!

Amber said...

Jen-

Hey it's Amber (Cannon's mom). I heard the news this weekend and I have been so worried about your little family. I am glad you updated your blog and wanted you to know that our family is praying for you guys. Cannon keeps asking about Carter and wants to send him some kind of present so you need to get me your address :)

Cannon actually has stomach migraines (CVS) and I had never heard of it before either. I think it's amazing you guys noticed a change and got him into a doctor right away... 2 weeks is all he had it? That is crazy how fast things can change. It's amazing they caught it so early... I told Cam (my husband) if there were anyone that I could envision conquering this it would be you and Carter.

We love you guys!

Amber

amberr_7 at yahoo dot com

Jon and Sarah said...

We are keeping you in our prayers. We wish you and your family all the best as you go through this together.

Elise said...

Oh, honey. You are such an incredible mother-- hang in there! We'll be praying for you here, too. Love you!

sara said...

my mom is putting you guys on the nauvoo temple prayer roll tomorrow. we're thinking about and praying for you every day over here.

The Dobrons said...

Our family prays for him by name. We love you guys! I can already see your strength and it strengthens me!

Amber said...

Love you Jen. Thanks for sharing your story. I love you flat out honesty about the things you never thought you would say! You crack me up. Love it! Be strong.

Anonymous said...

(((prayers)))
Kick the crap out of it! ;)

Mandy and Matt Kinsley said...

Jennifer, wow! You have brought me to my knees in prayer and my face barried in scripture! My desire to do this is only do to you and the leadership of your family. You are truly an amazing women. There is not anyone that I think deserves this less than you!! Your humor, tremendous strength, and amazing faith will pull carter through this. My eyes will continue to weep for you but most of all my lord will guide you and heal little carter. You will be in my prayers all of the time until he heals him. I love you for the leader that you have always been to me now and before. You are a true inspiration!!!!

Courtney said...

You guys are AMAZING!! What a whirlwind of a weekend!! I'm so sorry who are going through all of this... we are praying for you guys!! Love ya Carter! :)

Emily Ferrell said...

We are praying for your family. I was so heartbroken for you when I heard the news and I still can't believe it. I know you are strong and are just the right mommy for Carter to help him through this.

Karmann said...

My thoughts and prayers are constantly going out to you, Carter and your family! Sweetie I am so sorry that your little boy has to go through this! I cant even begin to imagine! My heart goes out to you and I pray that through this whole experience you will constantly feel the comfort of the Holy Ghost and you will feel peace. I love you darling!!

Aaron & Michelle said...

Our thoughts and prayers are with you. Fasting was pretty darn easy this past Sunday as we thought of Carter and your sweet family. Keep in touch. You guys are so strong. Aaron and Michelle Christensen

Chalonn said...

We love you Jen...from the Redd family up here in Seattle. We will continue to keep your family in our prayers...you are a wonderful mama and if anyone can do this you guys can....

Kaleb said...

I've been so worried about you guys and wondering how you are "handling things". After reading your post, I don't need to worry anymore! We love you and are constantly praying for your family-hang in there!! Love, Shane & Sherri Merkley Family

Jill said...

Hugs to you sister. And the boy too. And I guess the rest of the family since I'm doling them out.

Jessica said...

We are praying morn, noon, night and in between. We love you guys!

Mat, Chenae & Jackson said...

Jen, it's good to know how you are all doing. We've been praying for Carter and you guys. Thanks for sharing! We love you guys.

San Tan Bullies--Johnson Family said...

Jen and Bryan, I am so sorry to hear this news. We will keep Carter and your family in our prayers and put his name in the temple. May you continue to see the Lord's blessings all around you! Love, Ryan and Jennifer Johnson

Janelle said...

We will be praying for Carter and your family!

Blake, Jamie & Samantha Holiday said...

apparently, i have been hiding under a rock and just found out about carter. blake was reading through facebook and told me. i am sitting here reading your updates and bawling. my heart is with you, my sweet jen. i love you and your family and most especially carter. although, i've never met your cute kiddos, i've been able to watch them grow through your blog. he will kick the crap outta cancer!

Two friends and exercise professionals hoping to inspire the world to fitness! said...

You and your family are such an inspiration. I pray that he will recover fully and as quickly as possible. I don't know you, but you seem like you could be one of the best moms ever.