Delayed Intensification Complete!!

As of about an hour ago..... we are done with Delayed Intensification!!!!  Can I say that again??  We are DONE D-O-N-E with Delayed Intensification!  Wow, that feels so good!!  Abbey just took her last oral chemo tonight for this phase and she is now on a two week break from chemo.  

She is feeling good and today we even went out for the day as a family to some outdoor outlets.  There is a pond with birds there so the kids loved feeding the birds (actually Jacob and Abbey loved feeding the birds.... Micah wasn't willing to share his piece of bread with them so he enjoyed watching the birds while snacking :).    

Monday was fine at the clinic.  They were pretty positive when we were there last Thursday that she would need a blood transfusion by Monday, but she was just above the number that they would give a transfusion.  So, we have to go back tomorrow and they said they are confident that she will need blood by tomorrow.  She has been feeling great though.  Better than she's felt in a long time.  Her numbers were all pretty low as of Monday though and they expect them to continue to drop now as she got some pretty tough stuff during this phase and the medication usually takes 7-10 days to fully take it's effect on her body.

We are so thankful though that we can check this phase off.  The first week of this phase was filled with many tears (and on and off since we started it), and I can't tell you how many times I said to Jim that I wish we could just fast forward to the end.  So the fact that we're here is a huge burden off our shoulders.  Although we still have a long road of treatments ahead, we can now officially say that the worst is behind us!  As always, thanks for praying and for being our cheerleaders through all of this!  And to follow up from the last post.... here is the first huge blessing.....done with Delayed Intensification!!... more to come soon :)     

Almost There!... and some beautiful jewelry!!

Tomorrow (Sunday) is the very last day that Abbey will get ARA-C (the chemo that she is getting right now for 4 days in a row) and we are so excited to almost be done with it! We decided for her needle in her port to be left in on Thursday instead of doing the shots and so far everyday has gone smoothly with her getting her chemo here at home by the home health care nurse.  She will be on an oral chemo until Wednesday and then we will be done with Delayed Intensification!!  We are counting down the days (actually more like the hours) and we are so ready to be done with this intense stuff and to get into maintenance.

Abbey has been feeling much better this week then she did last week and has been handling the ARA-C much better this time around.  We're not sure why that is, but whatever the reason, we are happy.  We think the beautiful weather that we've had here the last couple days has definitely helped.  We have been outside from sun up to sun down (except coming in for potty breaks and meals (and chemo...) on these nice days and it has been a breath of fresh air for all of us... literally!  Abbey has been keeping up with her brothers and you'd never even know she's sick these last few days, let alone in the last intense part of this phase with chemo everyday.  Each day that the nurse has been here, she comes in, sits with her shirt up for her chemo, and then five minutes later, she's ready to get back out and play.  It has been amazing.

On Monday we will go back to the clinic for Abbey's blood to be checked.  Her red blood cells were low on Thursday and they are pretty sure she will need a blood transfusion by Monday since her numbers are still on their way down from all this intense stuff that she's been getting.  We are going Monday, prepared to be there all day (the transfusion alone usually takes about 4 hours) and then when it's done they will take her needle out and homebound we will be with only 2 days left of the phase.  

Last night we went to a park near our house and we walked and talked about almost being done with the worst.  We were talking about how we are going to celebrate on Thursday when Delayed Intensification is complete and Jim and I both agreed that we will start with taking a deep breath!  God is so good and I can't even believe that we've made it this far.  Not by our own strength.... we are so weak without Him, but His strength has filled us in our weakness and has carried us to this point.  

Isn't this necklace beautiful??!!  My dear friend Kendra called me today and asked if she could drop something off this evening.  She came with tears in her eyes (I had tears in mine too!) and this beautiful gift to me (thank you so much Kendra!!).  The picture on the necklace is of me kissing Abbey's head and we are both wearing hats with orange ribbons on them.  It was taken right around Christmas (it was one of the pictures on our Christmas card and she used the picture off there to surprise me) and it is very special to me.  On the back is a picture of our whole family, which I love so much too.  I love, love, love it and will treasure it for the rest of my life!

I also wanted to mention two other very special pieces of jewelry that were given to us since Abbey was diagnosed.  A friend of mine from college that has been an amazing support to us as we've gone through this (thanks Laurel!!) sent Abbey and I these matching "Hope Bracelets" and they are so special to us.  Abbey has a tiny, little wrist and it fits her just perfectly and it's so precious on her. We love wearing them and matching!  When she's grown we will be able to look back at her bracelet in amazement as to what a little peanut she was when she went through all this.  And maybe someday I will be able to give Abbey mine to wear and her daughter can wear her little one.      

The other piece of jewelry is Abbey's "Journey Necklace."  My very close friend Marcie (thanks Marcie!!) thought of this great idea of a charm necklace and putting a new charm on it each time we have a milestone through her treatment.  We have a journal to write down specifics about each charm so we will forever be able to remember each thing that she overcame.  In the picture you can see a few of the charms that we've added so far.  Isn't that a great idea?!  It hangs in Abbey's room and is a constant reminder of all the obstacles that she's made it past :)!

We have been blessed in so many ways... people praying like crazy for Abbey and us, meals, house cleaning, gift cards for gas, groceries, toys and date nights for Jim and I (someday we will go on some of those :), help with our kids, cards, notes and poster boards of encouragement, comments on our blogs, e-mails, beautiful handmade hats, people shaving their heads to support Abbey, gifts to Abbey, "Praying for Abbey" bracelets, gifts to us, Abbey's bedroom makeover,... to name a few.... we have been loved on in so many ways and we will never forget the outpouring of love that you've shown us through these last 6 (almost 7) months.  I know I can't mention every one on here, but each one has been like a huge hug to us and we are overwhelmed and thankful!!  And we pray for God's blessings to pour out on you as they have on us through you all.  Thank You!!    

I will keep you posted on how Monday goes and I will be sure to tell you when we are completely done with this phase :).  We also have some fun things to share with you next week and we are excited to celebrate some other blessings and gifts that God has given us with you all then (yes even more blessings on top of all that! :).  

Home

We are home and we are happy!  We got home yesterday afternoon.  These last couple weeks have been crazy and exhausting, haven't they?!  

So first, how is Abbey doing?  She is doing better today.  She has been more active today and is eating a little better.  Her appetite has been pretty non-existent since Friday, but today it seems a little better.  She hasn't complained of a headache all day and the nausea is gone.  She has been loving on Micah since we got home and her and Jacob have jumped right back into being best buds.  

We really think that ARA-C chemo that she had to get four days in a row last week (and will also get 4 more days starting this Thursday) is what makes her sick to her stomach and not want to eat.  It is so nice to have her needle out (she had it in from Thursday through Monday) and to give her body this few day break from that ARA-C.  I gave her a really good bath yesterday when we got home and plan to give her one everyday until she has to get accessed again.

I don't think we told you all the drama that we had last week with her being accessed at home and the home health care nurses coming to our house, but she had to be accessed three days in a row (which means they had to keep putting a big needle in her chest) and it wasn't fun.  She does way better then me and sits still and doesn't get too upset, but it was really frustrating b/c the whole point of leaving her accessed for four days is so the nurse could just come to our house each day, give her the chemo and then leave with no poking or pain.  Well, for some reason we had two 'faulty' needles in a row and each day they had to re-access her.  We are throwing around the possibility of having this next round of ARA-C given by shot, but are not sure which will be easier for her.  She will either need to have her needle in again for 4 days in a row and I will be stressed each time the nurse comes here or she will get a quick poke and then it will be over with, but that too would be four days in a row.  We are going to talk more with our nurse practitioner about it later today by phone to weigh our options.  I think we would do the shot for sure if she wasn't already getting poked twice a day from her lovenox for the blood clot.  Three shots a day will be a lot, but that needle in when we're home is no fun either... we'll see.

And how are we doing?  When Abbey bounces back quickly, so do we.  Our minds have been put to ease as far as her headaches.  It was great news yesterday when the doctors told us that the blood flow around the clot is better (they weren't expecting that this soon) so for that we are truly thankful.  Also, the eye doctor saw some swelling in her eyes when they first found the clot and after her exam on Sunday, they no longer see the swelling so that is a huge praise!

I asked Abbey if she was feeling better today and she spread her arms out wide and said "I'm feeling this much better mommy."  My eyes filled with tears as I was reminded of how amazing this kid is.  She goes through so much, yet she keeps bouncing back.  

One week from today we will be completely done with Delayed Intensification!  We are so excited for this phase to be almost over and for maintenance to be right around the corner.  We can't wait for her to consistently be feeling good and for her to stop getting hit so hard with all these tough medications.  We are almost there!

Thanks again to you all!  As always, your encouragement and prayers are a huge blessing to us!

Update

Just a quick update here. Abbey is doing well. Her headache is gone and she underwent the MRI last night. The resident radiologist said that he felt that the clot actually looked smaller than it was originally. Shelley said that the doctors this morning weren't sure if it was smaller, but they did say that the blood flow around the clot is better and that means the shots are doing their job.
The doctors feel that the headache was a result of the spinal tap that Abbey had on Thursday. They don't think it was a result of the clot. So, we are relieved and praising God for this good news. Shelley and Abbey are coming come some time today. Thank you all for your kind words and continued prayers. You are all a blessing to us.

Jim

Back to the Hospital

This is Jim again.  Abbey is back in the hospital for some further testing today.  She actually was in the hospital yesterday for about 6 hours.  There was a problem with the needle accessing her port, and this in turn caused a clot in her port.  A dose of TPA, anti-clotting agent, was able to break up the clot and allow her to receive her dose of chemo.  Shelley and Abbey didn't get home till about midnight.  

This morning, when Abbey woke up she did not feel well at all.  I was at work and Shelley called me and said that Abbey was complaining of a headache and that her belly hurt.  The nausea is a common side effect from the chemo, but the headaches were concerning since we've recently found out about the clot in her head.  So, Shelley called the doctor and he said that we should take Abbey to Rainbow to have some further testing on her head, in order to see if the clot had moved.  

So, Shelley and her mom took Abbey to the hospital while I stayed home with Jake and Micah.  Shelley called me a little while ago and said that Abbey underwent and MRI.  Still no word on the results, but I will update you when I get an update.  Please pray that we would trust our merciful God with this continuing battle with these headaches.  Abbey only has 12 days left in this phase and it's difficult to see that the end of this phase is soooo close and we continue to hit bumps in the road.  We know that our loving God will continue to sustain Abbey through this phase... please continue to lift her up in prayer for that continued strength and mercy from our Lord.  Please pray that our minds would be protected from the evil one as it's so easy to have your mind wander.  Thanks.

Jim

Jacob, Abbey & Micah on Easter

Quick update on things here...

Our week since we've been home from the hospital has been wonderful.  Abbey has been feeling great and we've been enjoying her feeling good and things being pretty normal around here.  

The shots have been going as good as can be expected.  She is definitely getting more used to them and looks forward to picking out a special band-aid after each poke.  Jim went to the store a few days ago and bought every kind of girl band-aid that they make so that has been a little bit of a distraction for her to the actual shot.  Jacob has been helping her through each shot by sitting in front of her and breathing out with her while she gets it.  She's been so tough and seeing that she is doing o.k. with them is helping me be a little more o.k. with giving them to her.

Tomorrow we are heading back to the clinic for the next part of this phase to begin.  We have to be there at 8:30a.m. for her to get IV fluids for a couple hours before getting a chemo that can be hard on her bladder.  She then has her spinal chemo at 12 (she can't eat until this is over b/c of sedation) and then we will go back to the clinic for her to get more IV fluids to flush the chemo through her bladder.  They told us not to expect to leave until around 5p.m. so it will be a long day.  She also will get a new chemo called Ara-C starting tomorrow and will get it for 4 days in a row.  Her needle will stay in and a nurse will come to our house everyday through Sunday to give it to her and then her needle will come out on Sunday.  That will be hard b/c she doesn't like the needle staying in and often complains that it itches and just bothers her.  She then will have a break until next Thursday and then again will have the 4 day chemo again and will need to have her needle in the whole time.  

We have two rough weeks ahead, but we know we will make it.  We look forward to starting tomorrow so we can get it over with.  I will try to update more as we go through the rest of this phase.

Thanks for checking in on Abbey and please pray for her to handle the rest of this phase with no problems.  Please pray that the needle wouldn't bug her and that she wouldn't be sick from these new chemos that she's getting.    

   

Home :)

That's right.... We're home!!  We actually got home Thursday and it has been so wonderful to be out of the hospital.  When I told Abbey that morning that we were going to get to go home, she quickly helped me pack up our room.  She couldn't put our things in our bags fast enough and she was all smiles and hugs as we waited for daddy to come get us.

Wednesday night the doctors had to make their decision about whether or not to start the second half of this phase on Thursday, or to wait one more week before continuing on.  The doctors were split on whether to start or wait another week (stressful!), but at times like these we need to trust our doctors and remind ourselves that God truly is in control of this situation .  We were really feeling like we wanted her body to have one more week to recover.  Especially after how very sick she was just a few days earlier.  So on Wed. night they decided to wait and we felt very comfortable with that.  As much as we want to get into maintenance, we even more want her body to be strong enough to get through the rest of this phase with no issues and for her to be feeling good for a while.  On Thurs. morning her ANC was 720 anyways, so her body naturally was telling us she wasn't ready to start (it needs to be 750) so that was confirmation from God that they made the right choice. 

Our last two days in the hospital were pretty uneventful, which is always so wonderful!  It was even more refreshing after the absolutely crazy week that we had.  We went in to the hospital with our Abbey having one major health issue (leukemia) and now came home with two major health issues (blood clot in brain), so our emotions have been on a roller coaster to say the least.  We continue to be confident though that we too will get through this.

The very hardest part about this new finding is these horrible shots that I have to give her.  She has been getting them since they first found the clot, but I have been giving them to her since Thursday.  It is hard to say the least and each time it breaks my heart.  She asks me please not to give it to her and then keeps saying she's not ready.  I am so nervous doing it still so it is very new and stressful for all of us.  Once the shot is over she quickly settles down, but the anticipation for the minute or two before is the hardest.  As an adult, I hate getting a shot so for this poor baby to have to get them twice a day is sad.  Our doctor told us that when the medicine goes in, it burns.  She has little bruises on her arms and legs where she's gotten them already, which is normal because it's a blood thinner.  The thought of her having to get them for six months is overwhelming and at this point we are just taking it one day at a time.  We are praying hard that this clot would go away MUCH faster than normal so these can stop sooner. 

Yesterday at lunch we had a really good talk with Abbey (and Jacob) about the shots and the little thing in her head that has been causing headaches and her eye's to hurt.  We talked about how the shots are making that go away so she can be healthy.  We've had these talks several times before about her chemo and port and all the medications that she's on and she amazes us as she listens intently.  She trusts us and finds her comfort in us so it helps her to understand and accept all that she has to go through.  We know with time she will get used to these (and maybe I will too??) so we just need to keep taking this day by day and trusting that God will get us through this new trial set before us.  

Our last couple days home have been wonderful.  We have enjoyed every second of being out of the hospital and all together again.  Yesterday we colored Easter Eggs and today we did an egg hunt around our house with our kids and my sister's kids, Gracie and Joey.  They had a blast and we had just as much fun watching them!  We then spent some time playing outside and we are so happy that Abbey is feeling better and has been able to do normal things with the rest of the kids.  

We hope you all have a wonderful Easter as we celebrate the resurrection of our Savior.  We are so thankful for His sacrifice for us and are even more thankful that He did not stay in the grave, but that He is alive.  We pray that as you reflect on that this weekend, that you would know how very much He loves you.  Happy Easter and God bless.

Love, The Colberts

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 :)

Another Bump in the Road

We had a rough night.  Abbey's fever was consistently high and got up to 104.9.  They were giving her tylenol every 4 hours and that would bring it down a little, but not much.  It stayed over 102 I think the whole night.  She was the sickest we've seen her yesterday. She would only open her eyes to go potty and then for those couple minutes being out of bed, she would cry and ask to be put back in bed so she could lay down. Amazingly, this morning around 9:00a.m. her fever broke for the first time.  It was a huge answer to prayer so for the progress in this area we are thankful.  Since then her fever has come back up a little, but not as high as it was last night.  She is now around 100 so we are praying for it to come back down to normal soon and stay there.  

Last night she had her CT scan around 9:30.  They explained to us that she would have to be very still during the scan and that if she has a hard time being still they would have to sedate her today for the procedure so they could get good pictures.  The scan went great.  She was calm and still and they got great pictures.  The radiologist was gone for the night, but we were assured that we would know first thing this morning what the scan showed.  The resident came in last night and said that she took a look and that she didn't see anything alarming, but that the radiologist would give us a final opinion on what he saw in the morning.

First thing this morning the doctor came in and said that they did indeed see something on the scan.  They are thinking it's a blood clot in her head.  She is scheduled for an MRI at 4p.m. today and they will be able to know for sure what's going on.  She will be sedated for this procedure since it takes longer and can be scary for little kids.  We are nervous about the blood clot, but also thankful that they found it now if that is what it is.  They assured us that if it is a clot, there is treatment to make sure it doesn't get bigger and they said that over time her body will dissolve it.  We feel like they are confident that it is a clot so now we are trying to just stay strong until we know for sure.  We are so happy that we are here in the hospital though and not at home.  If we hadn't gotten admitted yesterday they would have no idea about this new finding in her head.

At the 24 hour check her blood culture was negative, but they will continue to watch it closely and will again see if it's showing anything at 48 hours.  Of course this is great news as of now with the bacterial infection, but we aren't completely out of the woods on this yet.  Her fevers got so high last night that it was alarming.  Yesterday they also did a nose swab to test for RSV and other viral things and it came back clear so that was kind of frustrating.  If it is a virus then there would be something to blame the fevers on so at this point we still don't know why she is having them.  They did tell us that there are many viruses though that cannot be tested for so she may have one of those.   

She did wake up this morning with diarrhea, which yes stinks, but that seems like a virus type thing so in a way it's a relief that she is having some other symptoms other than just fever to point to a virus.  Her bottom is very sore from going potty and she is bleeding there each time I clean her up.  She's having a lot of pain each time.  She also has been having belly pain (cramping and gassy) which again would go along with a viral thing.  She is more awake today and although still feeling yucky we've seen some glimpses of Abbey.  She has watched some cartoons and we've read some books.  So overall we have had some progress in some areas, but now we have this whole new issue with the blood clot which is concerning.

Thank you for the outpouring of love that you all have showed us these last couple of days.  In the midst of this scary time, we have felt loved and know that both Abbey and our family is being prayed for continually by many people.  

Back in the Hospital

We've asked you guys to pray for us many times over these last six months and right now we are needing you to pray for our sweet girl more than ever.

Last night Abbey woke up around 1:30a.m. to go potty and immediately I knew when I picked her up she was running a fever.  She was burning up so we took her temp (over 101), called the doctor and by 2:00 we were on our way to the ER.

Our experience in the Emergency Room last night was the very worst experience that we've had since we began this and we've never been more concerned for the treatment that she got than we were last night.  As I've said before, we love our oncologists and nurses that we work with both in the clinic and on Rainbow 2, but the experience that we had with the nurses and doctors in the ER last night was very concerning to us, but I won't get into what happened right now...

She finally got admitted at 9:30 this morning (after spending 7 hours in the ER....).  We are now on the children's oncology floor (Rainbow 2) and are feeling much more comfortable with the care that she's getting here.  We are scared though and have many uncertainties as they try to figure out what's going on with her little body.  She has been consistently running a high fever and her body is definitely working hard to beat whatever is going on right now.  They are treating her as if she has a bacterial infection in her blood with lots of antibiotics, which if that's what's going on, it is very serious.  A bacterial infection can be life threatening.  She's had fevers in the past and we have been through this same drill, but this time is different.  She is showing many signs that this really may be what is going on.  She has been flat on her back in bed since the middle of the night, her fever has been consistently high and she is overall very sick.  She isn't eating, drinking and the couple times we've taken her potty she gets so sick that she throws up (or dry heaves) and just wants to lay back down.  We're concerned.  They're being very cautious.  

Please, please pray that this is not a bacterial infection.  We are praying that it's just a virus that will run it's course.  They are going to do some tests here soon to see if she could have RSV or some other flu bug.  We are praying that it's just something like that.  I'd be shocked if it's something like that though because  nobody in our house is sick and she never leaves the house and isn't exposed to many other people. It of course is possible though that she picked something like that up at the hospital when we were here before so we will just wait and see. 

We also are also waiting for them to do a CT scan on her head at some point today.  Her eye pain and pressure in her eyes is still bad and they are going to look into this more.  She should have the scan at some point today and although we are glad that they are looking into this further, it scares us to think about what they are looking for.  Please pray that her CT scan looks perfect and that there is nothing abnormal on the scan.  

If I'm going to be completely honest, this has been the hardest week for us since she was diagnosed.  Today has been the hardest day.  I am struggling to keep in together and feel like this situation could get bad and it scares me.

Thank you for praying hard right now for Abbey.  We are so close to maintenance so these setbacks right now are hard.  We are also asking that at this time we have NO VISITORS (Jim made me write it that way) to the hospital.  At this point, she is feeling so sick that we feel that it should just be Jim and I here with her.  We will keep you posted on her CT scan and what's going on with the blood culture.   

Home Sweet Home

Abbey was busy today playing with all her toys and played more today then she has in a few weeks.  

Yes.... it's good to be home!  When we pulled up yesterday Micah was sitting by the door waiting patiently for us to pull up and oh how good it was for us to see our boys and be back together again.  Jim held down the fort great while us girls were gone and even cleaned the bathroom so it was freshly clean when we got home.  He knew that I would jump in the shower and then give Abbey a bath right when we got home so it was nice for it to be sparkling for us.

After Abbey and I got cleaned up we all went right outside to enjoy the beautiful weather.  It was in the low 60's and just a perfect homecoming day for us.  Friends of ours just gave Abbey a jeep that their girls grew out of (thanks Gamads!!) so she spent some time learning to drive around.  She loved it!  We also went over to our neighbors house who have a swing set in their backyard and the kids loved being over there.  It was so wonderful to see Abbey playing, laughing and running around with other kids after the very rough week that we had.  She sure was sick, but she sure did bounce back quickly. 

  

Today I was busy washing, sterilizing and wiping everything down that went to the hospital with us.  For those of you that know me well, know that I have some germaphobe issues, so that's the hardest part about being in the hospital.  Although the whole floor is constantly being cleaned by people that work there and everything gets wiped down a lot, it's still a hospital with more germs then I want to think about.   

I can't complain about our hospital stay though.  Like when she was first diagnosed, the staff was amazing on our floor and I felt that Abbey was very well taken care of.  We learned early on that people who work with children that have cancer are amazing.  It isn't just a job for them, but a passion to help these children and their families.  I've said it before, but we have grown to love our doctors and nurses that we see weekly at the clinic, and it didn't take long to think very highly of the people that took care of our Abbey over the last few days.  

We saw many of the same nurses that took care of us back in October when she was diagnosed and there were definitely some moments where the memories of just six months ago were hard to think about. It was like de ja vu when we first got on the floor, but I was so thankful that we are where we are in her treatment now and aren't at the very beginning.  It is surreal to see many little kids walking around with bald little heads and tubes hanging from their shirts while their mommy's and daddy's walk with a poll filled with things dripping into their bodies next to them.  It is nothing that you get used to or can be prepared for and it's sad.  Yet the tone on the floor and the people that work there somehow make it a little easier to get through.  They love these kids and do everything and anything to make them feel comfortable and even smile and have fun while going through what they go through.      

On Tuesday night, the night we were admitted it was about 11p.m. by the time we were in our room.  She was accessed right away and blood drawn for a blood culture and a numbers check.  They then gave her antibiotics to kill off any infection going on in her body that could have been causing the fever.  They wanted to keep us for two nights to make sure nothing grew in the culture and to make sure her fever was gone and she would start feeling better.  She also got antibiotics through her port every 8 hours the whole time we were there.  The first 24 hours we had to stay in our room because of her fever.  They do that to protect the other kids on the floor in case they have some kind of sickness that could be 'catchy'.  By day three (in the morning) her fever had been gone for 24 hours so we were able to leave the room to go to the play room and walk the halls.  And then by late that afternoon they gave us the go ahead to go home.

We don't know what caused her fever, but nothing grew in her blood culture and she is feeling much better.  Today was the best she's felt in quite a while and it is so refreshing.  Yesterday she was supposed to be starting day 29 of her treatment which is the all day chemo, and spinal tap.  As of yesterday morning her ANC was 430 and it needs to be 750 to start, so she is delayed for a week and hopefully she'll be ready next Thursday.  As much as we want to get this phase over with, we were relieved that her numbers weren't ready because she is just starting to feel better and her body really needs this break to get stronger. 

Thank you so much for all the encouraging comments on our blog this week.  We can't tell you how encouraging it is to see so many people tell us that they're praying for Abbey and us when we hit these bumps in the road.  We truly felt covered in prayer and once again we were carried through.        

They're On Their Way!!!

They're on their way home!  We can't wait for our girls to get here!  Micah is anxiously awaiting his "Mama".  I'm sure Shelley will post something later with more specifics about Abbey... she's much better at this than I am! 

Still Not Home... Yet?

Yes, Abbey is still in the hospital as of this morning.  Shelley said that Abbey is doing pretty well.  Her temp was still hovering near 100 yesterday, but other than that she seems ok.  She is confined to her room because of the original fever, and this has made it hard on the both of them just staying cooped up in the room.  Hopefully today they'll be able to go for a walk to the play room on the floor.  Abbey's ANC is at 430 as of this morning.  We were supposed to start the second part of Delayed Intensification today, but since her ANC is so low, we are going to wait.  Shelley and I both are somewhat glad about this, we think Abbey needs a week break to recover from the first round, but we would also like to get this phase over with. 

She's not sure if they are coming home today.  I REALLY hope they are.  Micah can't stop saying "Mama", and Jacob told Shelley on the phone last night that he "really misses her a lot."  Even though it's been fun just hanging out with the boys, we need our girls back.  Thank you for your continued prayers.    I'll keep you posted on any news.  

In the Hospital

From Jim:

After Shelley and Abbey got back from the clinic yesterday, Abbey seemed to be ok.  She took a 2 hour nap and nothing seemed too out of the ordinary.  Later on after her bath, Shelley thought she felt warm and took her temperature.  It was 101.7 under her tongue... we've found this is the most accurate place.  Anyway, Shelley called the doctor and she said that they would just directly admit her into the hospital so they could give her antibiotics and monitor her.  So, around 10:30pm, they headed off to the hospital.  This is the first time in Abbey's treatment that she's actually been admitted into the hospital for an overnight stay.  

Shelley called me this morning and said that they are doing fine.  Abbey fell asleep almost immediately when they got there, and she was still sleeping as of 9:15am.  Shelley said that she is going to check with the doctors when they do their rounds and see what their plan is.  Abbey's nurse told Shelley that they will give her another antibiotic at 11am and then another at 7pm.  So, most likely they will be there another night.  I will keep you all posted on what's going on with my 2 girls.  Please continue to keep our family in your prayers.  Thanks!