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diagnosis of aplastic anemia

David’s Story: 6 Month Post Transplant Update

June 7, 2014 by Sandra 17 Comments


David's Story: 6 Month Post Bone Marrow Transplant Update #AplasticAnemia #BoneMarrowFailure
And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose. (Romans 8:28 NASB)

As I sit here writing this post, my 5-year-old son sits next to me.

His name is David.

He had a bone marrow transplant nearly six months ago on December 11, 2013. I know that if you’ve been reading my blog for the past year, you probably know about David. You know all about how he was diagnosed with severe aplastic anemia and had to undergo a bone marrow transplant as the only means of a cure. I documented some of our painful journey here on The Sensible Mom in blog posts. Then leading up to David’s transplant and throughout his entire month-long hospital stay, I shared videos when I could.

Now more than ever, I’m thankful that even through the sorrow and the roller coaster that life was at that point, I was able to find small ways to remember David’s reality through it. We’ll never forget what he’s been through, and because of that, we’ll praise God for the rest of our lives for what He’s taken us through and for what He’s given back to us.

davids-six-month-update

To be completely truthful, looking at pictures of David before his diagnosis — from when he was sick and we had yet to realize it — is downright gut-wrenching. Β As his mom, I see those pictures and my heart aches, because I know that while the rest of us were smiling, he was suffering inside. We simply hadn’t yet connected all the dots and made that trip to the emergency room.

I have similar issues when I look back at pictures of what David went through in the hospital during his transplant. I posted a few on his Facebook page, but there are far more that I can’t share publicly. I try to prepare myself mentally to look back at those photos.

David's Story: 6 Month Post Bone Marrow Transplant Update #AplasticAnemia #BoneMarrowFailure

I know that it’ll all get easier with time and as we continue to heal as a family, but right now, it’s hard.

Living with Fear

Another thing I’m dealing with is fear. There’s this fear that lives inside of me that wasn’t there before. At times, it triggers frightening thoughts. Other times, it makes me tense up, and I feel all edgy. I know that this fear is a part of me now because of the trauma of this whole experience.

On August 3, 2013, a bomb exploded in my life, and we’re still recovering from the devastation that it caused.

I believe that my Savior is going to get me through this, and I won’t live with this type of fear forever.

Moving onto the Happy Part of this Update

Enough about how I’m doing, let’s talk about David. πŸ™‚

David's Story: 6 Month Post Bone Marrow Transplant Update #AplasticAnemia #BoneMarrowFailure

He’s just about to approach six months post transplant, and he’s doing well. He still has some issues with graft versus host disease of the skin as a result of the transplant, but we’re praying for a total healing of David’s body over time. Graft versus host disease is a very serious complication that can occur when you’ve had a bone marrow transplant, but thankfully, David’s GVHD has not spread beyond his skin.

David's Story: 6 Month Post Bone Marrow Transplant Update #AplasticAnemia #BoneMarrowFailure

Also, while it’ll be a LONG while before David truly looks like his normal self again (because of the side effects of current and past medications), he is starting to look more like himself.

David's Story: 6 Month Post Bone Marrow Transplant Update #AplasticAnemia #BoneMarrowFailure

David's Story: 6 Month Post Bone Marrow Transplant Update #AplasticAnemia #BoneMarrowFailure

Here are pictures to give you a better idea of some of the physical changes that David’s had to endure since his transplant:

ronald-mcdonald-house

graft-versus-host-disease

post-transplant-picture

on-steroids-side-effects

fifth-birthday

luigi-shirt

day-100

school

David's Story: 6 Month Post Bone Marrow Transplant Update #AplasticAnemia #BoneMarrowFailure

David's Story: 6 Month Post Bone Marrow Transplant Update #AplasticAnemia #BoneMarrowFailure

six-month-update-post-transplant

six-months-update

medieval-times

As you can see, it’s been quite a journey. But we’re here — six months since a complete stranger (whom we can’t wait to meet one day) donated his bone marrow so that our son could to do what he’d constantly talk about doing — GROW UP.

We love you, David. You’ll forever be our #1 Superhero.

Click here for more posts and videos about David’s Story.


Filed Under: David's Story Tagged With: aplastic anemia, diagnosis of aplastic anemia, life with aplastic anemia, severe aplastic anemia

David’s Story: Bone Marrow Transplant (Day +22 through Day +46)

January 26, 2014 by Sandra 4 Comments


David's Story: Journey through a bone marrow transplant for a four-year-old brave boy #AplasticAnemia #BeTheMatch

Today is “day +46” since David had his bone marrow transplant.

In the world of bone marrow transplants, it’s fair to say that David is doing okay. If you would’ve asked me a week and a half ago how David was doing, I likely would’ve said, “He’s doing great. Yes, he’s still taking six medications a day, and, yes, he still has a port in his chest, but when it comes to his blood levels, they’re looking good. For this, we are very thankful!”

Today, though? David is doing okay (not great), because on day +37 we noticed a change in David’s skin. He had a red, raised rash on different parts of his body. Ultimately, the doctors confirmed that what David has is graft versus host disease of the skin.

David's Story: Graft Versus Host Disease

GVHD (graft versus host disease) is a serious complication that can occur when you’ve had a bone marrow transplant. Essentially, it’s when the bone marrow donor’s cells start to attack their host.

David is the host in this case. πŸ™

The doctors are keeping a close eye on David, and his medications have been increased. We’re making the trip to the Children’s Hospital in Chicago twice a week, and we’re dealing with this one day at a time.

Graft versus host disease can attack a person from the inside, too. It can affect the liver and the gut, so we have to keep a close eye on David and watch for other symptoms that can signal that the GVHD is elsewhere in his body.

David's Story: Journey through a bone marrow transplant for a four-year-old who was diagnosed with Severe Aplastic Anemia

For me personally, going through all of this is depressing and scary. I already knew GVHD was serious and that it could happen. But when it did happen and I started googling late at night…

Oh, I shouldn’t have done that.

But I did.

Looking at the bright side, I’m thankful that God is in control, and He’s blessed us with many wonderful family members, friends, and even people we don’t yet know who pray regularly for David. I know that prayer works and makes a difference.

So that’s where things are at this point. I’ll try to write again in a few days and not take such a long break in-between updates. πŸ˜‰

For those of you who’d like a little more in-depth information about what life has been like for David the past 20+ days, here’s that update:

Day +22: David had a clinic visit in the hospital’s infusion center. At first, he was very uncooperative, and this was hard to handle because he’d been doing so well since he was discharged on day +19. It was like as soon as he realized that he was about to step into a hospital room, he stopped in his tracks and wouldn’t go in. It took awhile before we finally got him to agree to go into the room and have blood drawn for labs. He also ended up having a dressing and cap change on his PICC line. Overall, David’s labs are good, and he’s doing exceptionally well.

*He keeps asking why his hair is gone on an almost daily basis. I explain over and over that it’s because of the chemotherapy drug, Cytoxan, that his hair has fallen out. I reassure him that it will grow back. David notices that “Caillou is bald,” but I’m not sure if this makes him feel better or not.

Day +23: Good day. Grandma and Aunt Sarah visit us at the Ronald McDonald House where we’ve been living since David was discharged from the hospital.

Day +24 and +25: David continues to do well and take him meds. He’s on eleven doses of medication a day.

Day +26: David has severe stomach pain and diarrhea. The doctors are concerned that he may have graft versus host disease of the gut or an infection. We make a visit to the clinic where they draw blood for labs and get samples/swabs for other tests. The diarrhea lasts through the entire day but is gone the next day. David’s white blood cell count and absolute neutrophil count are elevated which signal to us that David’s body is fighting an infection.

Day +27 and +28: The stomach issues are over, and he has a couple good days.

Day +29: David has a clinic visit and is doing so well that the doctor thinks it’s okay to start slowly weaning David off of PrednisoLone, the steroid he’s been on. It’s the steroid that I hate because of all the side effects that come along with it. There’s a drastic change that happens to a person physically when they’re on this steroid. Then there’s the mood swings, anger, increased appetite…oh, it’s bad.

I realize that the steroid is necessary, but I’m ecstatic to start weaning him off.

Day +30 to +36: The days are good, and David is doing well. In fact, David is doing so well that the doctor has David’s nurse remove the PICC line in his arm, and she clears him to leave the Ronald McDonald House and go home!

Day +37: I feel like a bomb explodes in my life again. The moment that I lay eyes on David this morning, I can tell that his skin doesn’t look quite right. He has a rash, and it’s spreading. I call the hospital, and they want David to be seen that afternoon. The doctor prescribes a steroid cream for his rash, and the graft versus host of the skin continues to spread over the weekend.

Day +38: The GVHD is worse, and now it’s itchy, too.

Day +39: The GVHD continues to spread and bother David. πŸ™

Day +40: David has a clinic appointment, and the doctor confirms that the rash is indeed GVHD. She doesn’t want to put David through a skin biopsy, because she knows that at this point there’s no real need for it. This makes my heart glad, because I don’t want David to have to go through that painful little procedure.

In order to try to stop the GVHD, David is given a dose of IV steroids in the infusion center. This day, he also has a 2-hour infusion of Pentamidine to prevent pneumonia. His oral dose of steroids is tripled. πŸ™

Ruben and I continue to apply steroid cream to David’s body twice a day.

Day +41 to +46: The GVHD gets worse but then starts to look better in some areas. Today (day +46), it looks a lot better. Praise the Lord! We’re supposed to visit the clinic for an appointment in the morning, but because of dangerous weather conditions, I’m going to call and reschedule for Tuesday.

More to come. I’m planning on sharing updates until David reaches his day +100 milestone.

Click here for more posts and videos sharing David’s Story.

Click here to visit David’s Facebook page. I update that space often.


Filed Under: David's Story Tagged With: aplastic anemia, bone marrow transplant videos, diagnosis of aplastic anemia, life with aplastic anemia, severe aplastic anemia, video

David’s Story: Bone Marrow Transplant (Day +19 through Day +21)

January 1, 2014 by Sandra 4 Comments


Bone Marrow Transplant (Day +19 through Day +21)

Click here for more posts and videos about David’s Story.


Filed Under: David's Story Tagged With: aplastic anemia, bone marrow transplant videos, diagnosis of aplastic anemia, life with aplastic anemia, severe aplastic anemia, video

David’s Story: Bone Marrow Transplant (Day +16 through Day +18)

December 29, 2013 by Sandra 1 Comment


Bone Marrow Transplant (Day +16 through Day +18)

Click here for more posts and videos about David’s Story.


Filed Under: David's Story Tagged With: aplastic anemia, bone marrow transplant videos, diagnosis of aplastic anemia, life with aplastic anemia, severe aplastic anemia, video

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My name is Sandra and I’m the author of this blog. I’m also a Christian, wife, home schooling mom of five, pro blogger, vlogger, and YouTube video creator. It's nice to have you here. Read More…

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I can only have these Costco praline pecans in the I can only have these Costco praline pecans in the house once or twice a year because it's so hard to be self-controlled when they're around. They're so sweet and delicious that I can't eat just one or a couple. 😱 Lol - Hubby knows this so he bought me some for Valentine's Day and the container is already halfway empty.😳 Oh well! I'm enjoying them! 😁 Do you have a favorite food you can't keep in the house much? #pecans #delicious #snacks #sweets #sogood #yum #selfcontrol #valentines #valentinesday #love #praline #nuts #momlife #snack #delish #delicioso #eatsandtreats #treat #eats #costco #kirkland #good #foodstagram #pecan
Homemade m&m cookies 😁 My daughter, Breanna, ma Homemade m&m cookies 😁 My daughter, Breanna, made these for homeschool this week. I found the m&ms on clearance after Christmas hence the red and green πŸ˜‰ #cookies #homemade #homeschool #homeschooling #baking #inthekitchen #sweet #treats #delicious #delish #delicioso #yum #eatsandtreats #momlife #homeschoollife #home #simpleliving #simplelife #sweets #christmas
I did my taxes this week and I'm so happy to have I did my taxes this week and I'm so happy to have that task done! I was pretty happy to see that we finally didn't owe the State this year and instead we're getting back $1. Lol πŸ˜‚ I'll take it! I love doing my taxes using @turbotax It's super easy and not intimidating because the TurboTax program is so intuitive and walks you through everythingπŸ‘ Seriously, I've used TurboTax MANY times and it keeps getting better. Do you use TurboTax? πŸ€“ Thanks to @influenster for a #complimentary code they sent me to try out #TurboTaxLiveExperts #contest #taxes #momlife #selfemployed #tax #taxtime #turbotax #money #todolist #refund #taxseason #simpleliving #simplelife #breakfast #done #coffee #taxrefund
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