Tuesday, April 7, 2009

The Great Physician

Yesterday was a whirlwind and so much happened.  My mind is all over the place and I am still trying to absorb all that is going on, but I will try to make sense in this post.  Sunday night into Monday we were so concerned about her high fevers and the possibility that she was fighting a bacterial infection in her blood.  Like I said yesterday, her fever was really high and it was hardly coming down with Tylenol.  This morning in rounds, the one doctor who was the resident the night she was really sick said she thought it quite possibly was a bacterial infection in her blood (scary!!), but as of today her blood culture is still negative.  We are almost to the point where we can put that behind us, but are definitely feeling better about that.

So Sunday morning, her fever finally broke and for a few minutes we felt some relief.  We thought she was going to start getting better and we would be free to go home soon with this behind us.  Shortly after her fever broke and things seemed a little less scary for us, our doctor came in and told us about this possibility of a blood clot in her brain.  We were told that they were going to look into this further with an MRI that was scheduled at 4p.m. so it was a long day of waiting.  I think much of the day yesterday we were pretty much in shock and were just putting one foot in front of the other and were doing our best to keep functioning.  

At 3:30 we were taken to the PICU for her to be sedated and taken for her MRI.  I had never before been on a pediatric intense care unit and I was nervous about it.  Our floor is so sad because it is all kids fighting different cancers and equally sad in the PICU as there are many kids fighting for their lives there too.  It was hard to be in there and as I held Abbey before she was sedated for her procedure, my heart was breaking for her and so many children that know hospitals all too well.  

Her MRI went well.  She was sedated in my arms and woke up with me standing right by her bed.  Although I was away from her for an hour and a half, to her it felt like a few minutes.  As I watched them wheel her away, the tears flowed and I couldn't wait until she was back in my arms again.  Once her MRI was done we knew it would take some time as we waited for the doctors to look at the findings.  

We came back to our room and ordered her dinner.  It was the first time she had eaten anything in a couple days so it was wonderful that she even had a little bit of an appetite back.  We read books, ate and snuggled with her pink blanket while we waited.

Finally, our doctor and nurse practitioner came into our room and confirmed that Abbey does have a blood clot in her brain.  They talked with us for a long time and explained exactly what that means and how we are going to go about treating it.  They feel that her one chemo that she got in the beginning of March which was the 2 shots in her legs (if you follow our blog, you remember me talking about those shots) is most likely what caused this.  She had those same shots the first week she was diagnosed and then the second set was about a month ago and she never has to get them again in her treatment.  A side effect of them though is blood clots.  As our doctor and nurse practitioner (Barb) stood in our room and confirmed this, Barb was in tears.  She said that she felt so bad because I kept telling them about her eye pain and headaches.  It would be easy at this point for me to say "I've been telling you guys about her eye pain and headaches for weeks" and to be very upset that these tests weren't done sooner, but we know and accept the fact that just like us, our doctors and nurses aren't perfect.  Like us, they make mistakes.  We also know that the Great Physician is watching over and taking care of this baby.  I think more than ever we were reminded of this these last couple days (I will elaborate on this in a minute).  So I gave Barb a hug and assured her that we found out exactly when we were supposed to.  Yes, this is hard to accept, but we are confident that Abbey is going to be just fine and get through this too!  We have seen her overcome the impossible so far and we expect nothing less in this new finding too.  

So, back to what this means and how we are going to treat it.  The blood clot is not in a vessel, but in a small space in her brain.  Children do amazingly well with these kinds of clots.  The one doctor told us today that if this clot was in an adult, they'd be in the ICU immediately (not very comforting to hear!), but they said that children usually do fine with these once they are found and the treatment almost always gets rid of them.  Now here's the yucky part.... she will have to get 2 shots a day until this is gone.  And the estimated time that they said it takes to get rid of them is 3-6 months.  :(  But, they said the shots are similar to those that people with diabetes use and they are very small and not very painful.  She already got one last night and two today and although she wasn't happy about it, she recovered quickly.  We will be learning how to give these so when we are home we will be able to give them to her.  I already feel like a nurse (and sometimes a doctor at this point) so I'm not too nervous about this new task set before me.  Of course we feel horrible that she has to get these, but we are extremely thankful that surgery was never brought up and these usually do not cause a problem.  She has gotten so used to her port being accessed with a big needle so we are praying that eventually she will get used to them.  It's heartbreaking to have to do it, but it is to make her well and we will do what we have to do.

We have felt God's hand in amazing ways these last few days as we've been here.  We came to the hospital this time for a fever.  She was admitted for high heart rate and then I just happened to mention (again... for the 50th time) to the first doctor that was in our room about her eye pain and headaches.  She hasn't even complained about that for a couple days and really had nothing to do with why we were here this time, but for some reason God put that in my mind to mention to him.  Without a second thought he said they'd order a CT scan for that day and then we found this.  If she wouldn't have gotten this fever and then this virus (or whatever else she's fighting right now) we wouldn't have been here and we would be home with this little clot growing in her brain.  Although very hard to accept this new challenge set before us, we know that God is taking care of her and we have been so comforted by that these last few days as we've gone through this time.  He truly is so good to us and we have been thanking Him continually for how intimately involved he is in our situation.  He's got our sweet girl in His hands and we have been resting in that.

So since we have so many amazing people out there following Abbey's situation, we are going to ask you all to continue praying for our girl.  Please pray for this new finding with the blood clot.  Pray that she would somehow get used to these shots (I know, it's sad to even think about her needing to get used to something so awful), but please pray that she would learn to accept them somehow.  Again, only something that could come from God, but we would've never thought she would be so accepting of a big needle being put in her chest through her port so often and she actually just sits, holds her shirt up for it and doesn't flinch.  Pray that this clot would clear up quicker than they are expecting.  They also told us that she would be getting weekly eye exams because when she had her eye exam yesterday there was something (I don't remember all the big words and exactly how to explain it) that they will be able to watch in her eyes to see if the clot is getting smaller.  The eye exam was less than pleasant and the doctor first had to put several drops in her eyes and then had to pry them open to look at them both with a very bright light.  Not pleasant to see her go through, but something she will have to get used to so please pray that she would start to accept this too.  Pray for her blood culture to again be negative in the morning.  At that point they will start to stop some of these endless antibiotics she's getting.  Please continue to pray for her diarrhea to stop, for her bottom to heal and for this virus to run it's course and get out of her system.  For her to start to feel better and get stronger.  And please continue to pray for her leukemia to completely go away and never come back.  For her to be able to finish this phase with no more problems and for us to be able to get into maintenance soon.  

Thank you guys for your continued support and love!  It means the world to us.

A couple more things I just thought of....  they are saying we may get to go home on Thursday or Friday :)  I also wanted to mention that this blood clot will not alter her treatment for her leukemia in any way.  They still expect her to be able to finish delayed intensification soon and be in maintenance right after (we may be pushed back one more week and not start this Thursday, but next since she's just getting over this virus), but the doctors assured us today that nothing has changed with her treatment plan.   

And if you stayed with me this whole post and are still reading... thank you!  We will continue to keep you posted on our Abbey :)

37 comments:

Beth said...

Praying for little Abbey even harder tonight...if that is possible! :)

Your attitude is just so uplifting!! How Blessed you are to feel and see how God is working in Abbey's life!! He certainly does have His hand in this and putting Abbey in the exact places she needs to be! Thank you Lord for taking such good care of the this sweet girl!!

Praying for you guys!!

Kristine said...

I'm sorry to hear that Abbey does have a clot. It is hard, but it WILL get better!

Katie came home with a blood clot in her jugular vein. We had to give her twice daily shots of Enoxaparen (Lovenox). I was VERY scared about giving her the shots and felt like a horrible mother...hurting her. It wasn't really that bad in the end.

We were told 3-6 months and I think it was just shy of 3 months when we were able to stop. I hope it's the same for Abbey! SHORT!

Also, they told us to use both arms and both legs. FYI - We found that Katie wouldn't even notice the shot in her thighs, but hated it in her little arms. (She was pretty skinny) After a while they said that as long as she wasn't covered in bruises (the shots create bruises) we could stick to just legs. It worked well.

Saying a prayer for Abbey AND you tonight. You'll figure this new twist out!

Bethany said...

Thank you for all of the details Shelley! I was excited to see the long post because I knew you'd give so much information in it. Thank you for telling us specifics on what to pray for. We definitely will. We hope that you are able to rest peacefully tonight and that things go as planned so that you can get home by the end of this week. Let us know if we can do anything to help :) Sending our love, The Vitts

Sharon Harrison said...

Hi..I just came across your blog last night and spent several hours reading your story...I will certainly pray for your precious Abbey. Your faith is amazing. Just know that someone in Memphis, TN is praying too!!

jan said...

He is at work, but man sometimes it is still tough. thanks for the faithful reminder....if you can, please read a book called 'trusting God, even when life hurts' by jerry bridges. you will love it, i promise.

love in Christ, jan :)

Keith and Jen said...

That was a long post - THANK YOU! It's so good just to get the information and know how to pray specifically. Thank you for taking the time to write it. I pray it's somewhat therapeutic for you to have a chance to sit and organize your thoughts and process a bit through the blog. Lots of us are hanging on every word of every update and praying accordingly. So glad to hear that the clot is treatable, and we trust that soon Abbey will be used to the shots and eye exams. She is one tough little sweetie pie. Thanks again for your honesty and thorough updates. Blessings to you all -
Jen Johnson (friend of BJ and Kris)

Cassie said...

I am a friend of Julie Hyde's... I live in Twinsburg & go to Mount Union College with her and through her, I have gotten to know precious little Abbey. :)

Ever since last October, she's been on the prayer list at Christ the King Lutheran Church in Twinsburg. My family has also been praying for her daily.

I want to give you some inspiration! In August of 2007, at 17 years old, I too had a blood clot in my brain! 3 of them. I actually suffered 3 strokes and was in PICU at UH for 5 days. Although I was much bigger than all the other babies on my floor, I had to give myself my own shots too. But God helped me get used to them. I completely recovered on my own. God was with me and I believe that he is with Abbey too.

Hey, maybe she's in the same bed I was in when I was there... and I hope that gives her a whole lot of luck and courage. :)

dana said...

Continuing to pray for Abbey...I will especially be praying for the shots and the eye exams. My sweet girl had lots of shots and eye stuff during her first treatment, so my heart goes out to you and her. I am happy that you'll be home soon...praying for you!!!

And I stuck with you the entire post...because I am so happy to hear. I've must have checked in a million times to hear how Abbey's doing.

Keep believing...keep hanging on...the Lord is carrying you through...

Praying,
Dana

Aggie said...

Thanks for the updates.

We will continue to keep all of you in prayer - especially Abbey.

Kelli said...

Wow, so glad that this was found so that it can be dealt with. And what a relief that surgery isn't on the agenda. That's wonderful to hear. God bless Abbey and I hope she is feeling much better soon!

Lindsay Day said...

I am praying for Abbey and for you! Thank you for sharing your faith. God shines through you.

Sarah said...

Thank you for the update. I am so glad to hear that you are being taken care of so well. I will be praying for all your requests/needs. It is especially on my heart to pray for Abbey taking those shots! I had a blood clot (in my thigh) when I was pregnant with Noah and Gabriel and I had to give myself shots 2 and later three times a day. It helps if you move the shot location around - she might even be able to tell you if it is a "good": spot or not when you pinch up the skin - she will probably get little nodles at the location you give the shot - but they do go away after a few days and you can see them, you just feel them, but it just makes giving a second shot too close to the location hurt more. I was able to do them in my abdomon skin as well. The good thing about them is (unless your using a different type of drug that I did) you don't have to try to get this stuff in a vein - you just pinch up some skin and jab it in.
Also, don't be suprised if she starts bruising really easily. The drugs are thinning her blood so even a small bump might cause her to bruise more than usual.
You guys are amazing.
Thank you so much for posting your ups and downs. Your faith strengthens me.

Love in Christ,

Sarah

Julie said...

Hello, a friend of mine referred me to your blog and I am just in awe reading what you are going through... because WE ARE TOO. I am a missionary living in Hungary and I have just spent 2 weeks in a Hungarian ICU with my son sleeping on the floor and then another 3 weeks in the neurological ward with him while they are dealing with a blood clot in his vein behind his ear, this is a key vein that goes to the brain and then to the heart. The blood clot has also paralyzed one of his eyes. This all happened so fast for us to, in the matter of 3 days all from an ear infection that led to surgery, his eye being paralyzed and then the blood clot. We had a CT scan to show this. We are home from the hospital now for a couple of weeks and adjusting. I have to give him LOTS of medicine that makes his crazy angry and moody and the belly shots twice a day. We will have a follow MRI at the beginning of June and then see if the blood clot has gone away or if he will need 3 more months of shots. He kept complaining of headaches between his eyes. It was so strange. Thankfully he is doing better, but it has been a hard road. I will be praying for Abbey and I am praying for our dear son Eli. This is such a crazy place to be, isn't it? God is so gracious to provide the health care our kiddos need and I am thankful! Hugs from afar, julie

ELISABETH said...

Truly amazing. God is watching over you. I will continue to be in prayer.

Melissa said...

Isn't it amazing, how something you were so afeared of, a fever, a blood infection turns out to be a blessing, let's you be inpatient so you can finally get that CT, just on time.

For how awful this virus has been kicking Joshua, it allowed us to be inpatient, to get his scans done early, to have his contrast dye administered in a way that was the most comfortable it has ever been. Amazing, how the thing you can be worried the most about turn out to be such blessings.

Yes a blood clot in her brain is scary, but not nearly as scary as wondering why her eye pain was continuing. You have an answer now, and they can fix it. Not knowing, being unsupervised with your fear in your mind is much more formidable.

Abbey is a courageous fighter, this isn't anything she can't handle. And your right there are things I thought Josh would never cooperate for, and he does. No one ever thought we'd get a simple blood pressure on that kid, and this just yesterday he told off a nurse for not doing it on his arm and reaching for his leg. And then again for not letting him see the read out and numbers.

It's amazing what your "new normal" can be. She'll adjust, you all will. And when she is old enough, what bravery you'll have to tell her about, how proud she can be of herself and her family. What strength she will find in the faith that carried you through.

Anna said...

Colbert Family, We are praying continually for your sweet Abbey and your family. God is truly amazing and seeing Him work in your lives is such an awesome thing.

Praying for you all!

The Jordan's from TN

Anonymous said...

Shelley will also add to our prayers for God to bring you comfort and assurance while you adjust to giving Abbey her shots.
We love you guys, we absolutely believe in the power of prayer and will not stop ! We promise !

daisy2biker said...

Praying so hard for dear Abbey! Praise God the clot was found now and able to be treated. Also, it is good to hear that this will not alter Abbey's chemo treatments. Your positive spirit is so uplifting. Praying for all of you to get through this road with flying colors. Praying always...

April Swarthout said...

Praying for Abbey! And a quick recovery! Nothing is better than HOME.

Suzanne said...

Hello Colbert Family...I found your blog through another one I follow. I'm lifting up prayers for sweet Abbey as she faces taking the shots to get rid of the clot. My son Philip was diagnosed with ALL last March...he's in maintenance now and doing well...but we've had our hurdles as well.

Love and Prayers from a fellow cancer mom...

Suzanne

www.caringbridge.org/visit/philipendres

The Rosses said...

I'm so happy to see the update and the many was God is showing His hand in this situation. I've been in bed with a horrible stomach bug and the only thing I wanted to do was get down to the computer and check on Abbey. Shelley, she'll get used to those needles..they are so small and go in so easily. You may be able to get something called an Inject-ease to help make the insertion easier. I believe BD makes them. That was how I made it through my first few years of injections. We're praying for you. Thank you for changing the way we pray!

Shawna from Texas said...

Continued prayers for healing for Abbey and patience and strength as your family helps her conquer this battle!

Rebecca Louise. said...

Thank you for the update. It does all sound scary but Abbey will fight it all :) xxx.

Anonymous said...

Thank you so much for the update on Abbey. Praying that the shots quickly rid Abbey of the blood clot. She was a brave little fighter to handle everything the past few days. Praying she feels better and gets to come home soon.

Gail
Annapolis, MD

Hope said...

Wow, I'm sorry to hear about the blood clot, but so relieved to hear it's treatable! I'm praying for Abbey!

Ferrick said...

Still with you, always praying.

Anonymous said...

((Hugs))

Saying a prayer for your family.

Take care,
Amy
www.crumbsonmyfloor.com

Anonymous said...

Thank you for the updates!! Continually praying for Abbey, and your family!! I can't wait for this Leukemia and blog clot to be gone!

Praying-praying-praying...

love,

the Mobley's

JD said...

I'm new to your blog... I wanted you to know that I will be praying for Abbey. We walked this journey with close friends whose son battled PH+ ALL and won, God was with them every step of their incredible journey, and prayers helped sustain them. He is 7, has been in remission for a few years, he's doing GREAT! Hang on to hope...

jEnNy said...

Saying a prayer for your family here in the Lone Star state. God is with you.

Heather said...

Catching up on ALL the goings on with sweet Abbey, as we have been in house for 24 days for round 4.All I can say is wow and thank our amazing God for the way things fall so nicely into place sometimes.Abbey is strong and resilient.As are the two of you.You will wade through this latest and surely come to the other side before you know it.Keep up the the good fight and the the inspirational positive outlook and awe inspiring faith.With all those things on your side,there will be nothing you will not overcome together.Way to go Miss Abbey.we are proud of you.Another amazing little warrior.

Keith and Kris said...

Poor Abbey! What a horrible thing for you (and especially Abbey) to have to go through on top of everything else. You are all in my thoughts and prayers.
Kris

Jenny said...

Thanks so much for the update. Still praying for your beautiful (and very brave!) little Abbey. I have put a post on my blog to get more Aussie's praying too! Take care and bless you all!
Jenny

Janice said...

So thankful for this outcome. Praying!

Lisa Kobb said...

It is so amazing to see how God is upholding you through some of the most tremendous of trials! You are a light and an encouragement to all who are reading this more than you know. I shared Abbey's current condition with my Bible study group this morning, and they are all praying for her and your family. We will continue to lift you up in prayer as well.

Monica said...

Abbey is in my prayers! I don't have your badge displayed due to space...but I do provide a link.
I hope all is well and that you all will have a Happy Easter!

The Beaver's Family said...

We are lifting your Abbey and your family up to Jesus everyday. God bless you all.