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!

Small Steps Back

So the last post that I did was titled "things are on the up and up"..... well, can I take that back?. About two hours after I posted that, Abbey started to get sick and we have had some rough days here since Saturday evening.    

We spent the whole day today at the clinic and we (myself, the doctors and nurses) are trying to figure out what is causing some of these unusual side effects right now in the phase.  Some of the ways that she's feeling would be normal if she was in the middle of the steroids or if she just came off them, or if she had just had chemo, but none of that is the case now. She's actually on a break right now so she should be starting to feel better, not worse.  

So back to what's going on...  Saturday night Jim and Jacob headed out to church and when they left, things here were fine and I didn't foresee any issues with them being gone for the night.  Soon after they walked out the door Abbey started throwing up.  For some reason when any of my kids throw up, I freeze right in my tracks.  I seriously cannot move a muscle in my body. You'd think I'd run to get something for them to throw up in or move things so they don't get hit, but no, I just stand there, stare and say "you're o.k. honey" about 30 times.  Well on Saturday she was sitting on her very favorite pink blanket on the couch.  Thankfully the pink blanket was laid out on top of the couch so it was a little more manageable when cleaning it up. After getting everything out of her system I finally was able to move again and quick locked Micah in Abbey's room.  I then got Abbey cleaned up enough to get a bath.  I then spent 45 minutes getting the blanket clean enough to be able to throw in the washing machine.  I was sure she would feel better after getting all that out, but the rest of the evening didn't get better.  She laid in her bed from 6:30p.m. until the following morning at 9:30a.m.  Heartbreaking to say the least!  Not what a three year old should be doing and the tears flowed that night as I watched my baby be so sick in her bed.

The good news is that she hasn't thrown up since.  The not so good news is that she still feels pretty yucky.  Some of her other complaints that have been on and off since Saturday are headaches, neck aches, pain in her eyes, and stomach pain both inside her belly and outside to the touch.  What's odd is that she seems to have taken a step back these last couple days and we would expect her to start getting stronger right now.  She overall has been just laying on the couch much of these last days and is pretty miserable.  It's been so sad.  

I know we are at the end of the worst.  Once we start back up with the phase, we have 2 weeks and then onto maintenance.  I know in my head that we are so close.  That we've come so far and that much of the worst is behind us.  But my heart is tired of it all.  It just wants the worst to already be behind us.  My heart is in maintenance, yet my baby still has two more intense weeks of chemo that she has to get through.  If I sound like I can go from being so encouraged and feeling great (like in my last post) to feeling pretty low and discouraged... it's true.  There have been many times throughout these last six months where things can change quickly and my heart goes from being happy to being weak.  I know my God is always the same.  Regardless of if we're having a good day or rough day, He is still in control of ALL things.  I still trust Him and know that none of this is a surprise to Him.  I am just tired and ready to be past this part of the journey.  So please be patient with me and pray for my strength to be renewed.

Please pray that her eye pain/pressure would stop.  It gets severe at times and all she can do is scream.  Please pray for her body to get stronger and for her to start to feel better overall.  For her tummy pain to go away completely and for her low grade fever to just go away and never come back.  And please pray for wisdom for the doctors as they will decide Thursday whether to push ahead and start the second part of this phase, or to wait one more week to give her body more time to recover.  We so appreciate your prayers during these next couple weeks.  Thank you!

Things are on the up & up

Our day at the clinic on Thursday went fine.  She didn't get chemo so I actually didn't mind being there  :)  Her ANC is still low... even lower than last week (around 300), but that was to be expected.  By Thursday she was feeling pretty lousy from the steroids.  She slept on and off all day Thursday and was pretty wiped out.  Her last dose was Thursday night and when she went to bed that night I was so happy that we made it through those two weeks of steroids and that she was done.  I think I smiled until I feel asleep that night.  

I have had many moments lately where I just can't believe how far we've come and how well she has done with all she's had to endure, and as we approach the end of the hardest part of our journey I find myself being so amazed.  Amazed that it was 6 months ago this Thursday that she was diagnosed and amazed that we are where we are today.  Overall just amazed that we're not only still functioning, but thriving in the situation that we're in.    

I can't wait for what the future holds for us though and we're so ready to get to Maintenance.  For Abbey to start to be able to leave the house again.  For her to feel good almost all the time.  For her hair to come back.  I can't wait for her immunity to be almost back to normal.  For her body to be strong again and for her to be a normal 3 year old again.  Although we still have 20 months left of treatment, it will be so much less intense.  She will get chemo once a month instead of once a week (or more).  We even asked the doctors about going on vacation this summer and they said absolutely :)  It's hard to imagine being able to take her to church at this point, let alone on vacation, but by summer they are telling us that will be there.  We are excited!

So now what?.... well, we are on a one week break now.  She is still in delayed intensification and has the second part of the phase to get through.  This Thursday we will go back and see if her ANC is ready to continue on.  Her ANC needs to be at 750 to continue and they told us last Thursday that there's a good possibility that she won't be ready.  Her body may need an extra week to recover from all it's been through these last three weeks.  If she is ready, she will get 3 doses of chemo that day.  She will get spinal chemo (that's when she needs to be sedated) :(, and two new ones that she's never gotten before.  The one can be very hard on her bladder so she will have IV fluids that day for 5 hours to flush the strong medication through her bladder so there are no complications.  It will be a long day at the hospital, but they said kids normally don't have trouble with it since they are so careful to make sure their little bodies are completely flushed all day to prevent irritation to the bladder.  The third chemo is one that she will get four days in a row through her port (they will send a nurse to our home to administer it) and then she has three days off and on four again.  Her needle will be left in for those four day stretches while she's at home, which I'm not looking forward to, but she is usually very accepting of it so we'll just have to see.  If her ANC isn't ready Thursday, we'll get a break for another week and then will see the following Thursday if she's ready.

Today she is feeling good.  I can really tell that the steroids are coming out of her system and each day is getting better.  It's so amazing how fast she bounces back and for that we are so thankful.  Toward the beginning of her treatment, the one doctor told us that if we (as adults) were going through this same treatment, we'd be flat on our backs the whole time.  Although feeling really yucky Thursday, she's already playing and keeping up with her brothers today. She is full of smiles and hugs and oh how much we love every second of it.  Kids are amazing!  

Last night after dinner we took the kids for a walk in their wagon.  It was pretty chilly, but we saw many signs of spring on our walk and are anxiously awaiting it to arrive!

And a quick update on the rest of the crew here.  Homeschooling continues to go well.  We have been taking lots of days off these last few weeks as Abbey hasn't been feeling good, but since I started Kindergarten mid year anyways, I figure every week we get done this year is a week off during the school year next year.  Jacob is reading short stories and it has been a pleasure for me to see these kids learn so much.    

Today Jacob had his first indoor soccer practice.  This is something that he has been looking forward to for a while now so we are so excited for him.  It was fun to see Jim (my husband) pick out shoes, shin guards, socks and shorts for Jacob.  And then when the stuff came in the mail, he was so excited....  I think Jacob's almost as excited as his daddy :)  Jim loves soccer so for him to see his first born actually being able to start playing is a joy to him.  They've been practicing in the basement and Jacob is a natural.  Jim said the practice went great.  Jacob loved it and did really well.  Here's a couple pictures from his practice today.

Micah continues to keep us smiling.  He is very animated in his expressions and he's a fun little guy.  He is our late walker... still crawling quickly everywhere.  He just started walking behind those push toys so he is walking around from room to room with those, but isn't brave enough to let go.  If we just hold one of his hands he walks all over, but doesn't have the confidence to do it alone.  He's so close so we know he'll be there soon.  It's fun as he gets older to watch him start to play with the "big kids."  He thinks they're so funny and just loves to be with them.  He loves balls and says "ball, ball" on and off all day.  

Jim and I continue to hold up pretty good.  We are amazed how normal things can seem in the midst of this very un-normalness.  We have had people tell us that they could never make it through something like this.  Trust me, I thought the same thing 6 1/2 months ago.  If someone would have told me that one of my children would have cancer, I'm pretty certain I would have had a heart attack right then and there and would have been a goner.  But you do what you have to do and you stay strong for the ones you love.  We feel confident that she is going to be completely healthy when this is all over.  That she will lead a normal, happy, healthy life and that this will all be a memory someday.  And you know what?!  every second of all this will be worth it when we get to that point.  We have a lifetime of memories to make as a family and a million more days to enjoy with our Abbey.  And we are so thankful for how God has truly carried us through each and every day of this.  No, it's not easy or something that we are happy to be going through, but there have been good things that have come of this and for that we are thankful.  Thank you my blogger friends for loving us through this.  It means so very much to us.  God has used you guys to walk this road with us and be an encouragement to us.  Thank you! 

Abbey Update

Quick update... 

I've been busy sitting on the couch holding Abbey much of the last few days so haven't had much time to do anything else.  So, I need to get some things done now while she sleeps soundly in her bed (and hopefully watch 24 with my hubby... tivo :), but wanted to do a quick update to let you all know how our little love is doing.

Sunday she started having some issues with going potty and by the afternoon she was holding it for hours because it hurt.  At that point I knew I needed to put a call into the doctor and let them know what was going on.  They wanted her to be seen in the ER due to the possibility of an infection so sadly, we were off to the ER on Sunday early evening. Her urinalysis came back normal, but they did a culture and were going to watch it for a few days.  On Tuesday, she was still having a lot of pain and was very hesitant to go potty.  I talked to the nurse practitioner that afternoon and she checked her culture and sure enough, they saw some abnormal things.  So, she was put on an antibiotic that day.  She seems to be feeling better each day.

The steroids have really started to catch up with her at this point.  Tomorrow is her last day (can I hear a huge AMEN)!!!  I am so ready to stop giving her that poison and for it to come out of her little body.  Her poor little belly is so swollen and she is laying on the couch or on my lap much of these last few days.  Poor baby!  I had a small breakdown this morning and had to get some tears out, but am seeing the light at the end of this steroid tunnel.  It's just so hard to see her not feeling good and I'd do anything to take it all away from her.  

Tomorrow, we go to the clinic, but not for chemo... yeah!!  They will check her blood and see where her numbers are and then she has a one week break.  Her body needs it so bad and I can't wait until this weekend when she is off the steroids for a couple days and for her body to start getting some strength back.  I know she will be feeling much better soon and am just so happy that we are at the end of this round of steroids and past the first half of this tough phase!!  I talked to our nurse today and she said that the second half of this phase usually seems easier on the kids so we can almost say that the worst is behind us!!  I'll post some pictures of her smiling and playing this week (because I know she's going to bounce back quickly and be doing those things soon) :)  Thanks for checking in... 

Happy Birthday Jim!!

March 24th, 1978.... a few minutes after Jim was born (yes, that's really him!)

Dear Jim,

I wanted to share a couple things with you today (and the rest of the world :) on your special day.  First of all, I can't believe  your 31!  I still feel like we are 21 and 22 .... like we just got married and are still newlyweds (not only do I feel like we haven't aged, but you still look 22 (notice how he looks exactly the same on our wedding day, 9 years ago as he does today :).... why am I aging and he's not?!! :) )  Anyways, it's hard to believe that we have been married 9 years already this summer.  In a way it seems like we just said "i do" yesterday, but then again I can't imagine life without you.  The memories that we have made both together and as a family are the best of my life.

Our wedding day.  July 1st, 2000

A little walk down memory lane.  I will never forget our first apartment.  It was a tiny, one bedroom apartment and I remember being so content there and honestly thinking that we could live there forever.  It didn't matter that the walls and floors were paper thin and we could hear everything that went on in every apartment around us.  Not to mention it was right across the street from a crazy high school and we experienced some other really weird things happen around us the year we lived there.  We were together and that was all that mattered.  And I still remember how you willingly moved to Ohio so I could be back home.  You would do anything to make me happy.  You still are that same way.  And I have seen  how God has blessed you in many ways because of  your faithfulness to Him.  After applying at several police departments, including Cleveland, God gave you Pepper Pike.  What a blessing that was and is to both you and me.  And not a day goes by that you don't appreciate that job and do your very best at it.  You are a hard worker and you do everything to the best of your ability.  You never complain that you have to get up at 5:30a.m. everyday and you have always supported and loved the fact that I stay home and raise our kids.

And I will never forget the night our first born, Jacob came into this world.  It was magical and as I watched you hold him tight and stare at his little face, I knew you'd be the most amazing father that a child could ask for.  You are.  And then when your first girl was born.  Oh how you wanted to protect her and love her forever.  You do.  And Micah... even though he cried for 3 months straight, you never ceased to amaze me with your patience and gentleness with him. These kids adore you.  Their lives are safe and secure with you and they are each turning into these amazing little people.  It's because they have a father who not only loves them, but who invests in their lives continually and who teaches them what's really important in this life.  One who sacrifices daily and is committed to God, their mommy and them.  

Daddy and Jacob on the day Jacob was born... July 8th, 2003

Daddy & Abbey in the hospital.... a few days after she was diagnosed.

Daddy trying to patiently get Micah to stop crying :)

And as a husband.  You have been so good to me.  Since we were first married, you have been the steady, consistent thing in my life.  Since day 1 you have protected me and taken care of me and our family and I know you will continue to be our rock.  You are even keeled and keep me from going off the deep end at times.  You have always been the person that I can go to when things seem like they are falling apart.  And you've never amazed me more than you have these last six months.  What we are going through is something that most people will never have to endure.  We have had the most stressful of days, scariest of nights and saddest of hours.  We have walked a road that at times seems like the impossible.  Yet you have never once... ever... waivered in your faith or your commitment to continue to lead our family through this.  Over these last six months, we have been through so much.  Yet we have made some of our greatest memories as a family.  We have laughed hard together and cried hard together.  We have grown in many ways, and for that I'm thankful.  I look forward to spending forever with you Jim! 

 Thank you for being the best dad and husband to us!  Happy Birthday!!

I love you!

Shelley 

Abbey Update

First of all, let me say thank you so much for giving your favorite recipes!  I printed them all out and can't wait to start making them!  I will be going grocery shopping within the next couple days (actually Jim will be going.... he's our grocery shopper :) and once we get the stuff, I will get cooking!  Hopefully you all got some new recipes too!  Thanks for participating :)

So things here have been pretty good overall.  We went to the clinic on Thursday and her numbers dropped significantly from the week before.  A week ago Thursday, her ANC was over 5,000 and yesterday it went all the way down to 400.  Since this is the last intense phase, they continue to give her the chemo no matter where her numbers are so even though she is very susceptible to infection right now, she was hit again with some strong medications.  They expect her numbers to fall even more this week from the chemo yesterday.  We are just praying for no fevers or infections and for her ANC to make a comeback soon. 

She also started up on the steroids again today and will be on them for the next seven days.  She handled the first round of steroids like a champ so we are praying that her body does as well this week.  The difference is that her numbers are so much lower this week and I still feel that she has some built up in her body from the first week so we don't really know what to expect.  We are just taking it one day at a time and knowing that once we get past this phase, things will get easier.

Next Thursday we will go back to the clinic, but not for chemo.  They will just check her numbers and see if she needs a blood or platelet transfusion.  It's been a while since her ANC has been so low or since they talked to us about transfusions so it's hard to be back in this boat.  We knew this phase would be tough, and overall she is acting normal and continues to play and be happy, but oh how we just want her body to be strong and healthy again.  She will get there and in the meantime we will continue to trust that God has a perfect plan in this and is carrying her and the rest of us through.

So in a nutshell, we are praising God that she continues to be active and happy.  She isn't complaining about much pain or feeling sick so overall you wouldn't be able to tell that her numbers are low and that she's on so much heavy medications.  We are praying that she has no infections or fevers.  That she handles the steroids as good as the first week.  That this week would go fast and that her bone marrow would recover quickly and her numbers would go up. Please pray that her ANC would be higher this coming Thursday than it was last Thursday.  And most importantly, that every last leukemia cell would be killed and would never come back.  Thanks for checking in.  We will keep you posted as this week goes on as to how she continues to do.

Recipe Exchange

Sorry that "tomorrow" turned into a couple days for our recipe exchange.  We have had beautiful weather here for the last couple days and have been taking advantage of it to the fullest.  This morning in the middle of our homeschooling, a friend of mine called to see if she could pick up Jacob to go with them to the zoo.  At first I said yes, then thought for a minute and said "we'll all go".  It was so last minute, but so much fun!  When I told Abbey we were going she asked "I can go mommy?"  She then hugged me for about 3 minutes.  She was beaming all day as she ran around with her brother and friends as I was too as I watched her.  I will post some pictures tomorrow (or when the weather isn't so nice :) from our day.

So back to recipes...  

(I was recently looking back at old pictures and found this picture of Abbey eating Lemon Chicken.  It was taken last summer, a few months before she was diagnosed.  Isn't she sweet?!  :)

Lemon Chicken

*  4 chicken breasts (The chicken breast that we buy are always so thick and we like our chicken thinner so I always filet it all the way through to make it thinner)

*  1 egg

*  7 tbls. lemon juice 

*  3/4 cup flour

*  1/2 tsp. garlic powder

*  1/2 tsp. paprika

*  1/4 cup butter

*  6 tsp. chic bouillon granules

*  1 1/2 cup boiling water

*  1 box pasta of your choice

Beat egg and 1 tbls. lemon juice in bowl.  On plate, mix flour, garlic powder and paprika.  Dip chicken in egg/lemon mixture then coat in flour mixture.  In large skillet, melt butter and brown coated chicken on both sides (med - med-high heat).  In medium pot, dissolve chic bouillon in boiling water and then add remaining lemon juice (6 tbls.).  Pour liquid in skillet with chicken and simmer, covered for 20 minutes, turning chicken over after 10 minutes.  

Serve over hot pasta.  The juice that you cook the chicken in is delicious so be sure to pour it over the pasta and chicken.  

As a side note... it is a pretty salty dish (that's why Abbey loves this so much when on the steroids) so feel free to adjust the chic granules and lemon to your taste.  I sometimes double the liquid part of the recipe so there is more to pour over the pasta... Abbey and Jacob often ask for just the lemon juice to put over pasta, but it is definitely better when cooked with the chicken so I like to make extra just to have :)  

Now it's your turn....  Add one of your families favorite recipes in the comment section.   Everyone can use more recipes so the more people that participate, the better :)  Looking forward to seeing what  you all like and having some new things to make!!

   

Lemon Chicken

Abbey eating lemon chicken

So I'm sure you're wondering if the lack of posts means Abbey is having a rough time right now, or doing great.  Well.... she's doing amazingly great!!  She made it through her first week of steroids with minimal side effects and she continues to amaze us in how well her body is handling this tough phase.  Her appetite has been up and she is still craving lemon chicken among some other interesting things, but other than the increased appetite, we aren't seeing as many side effects as we anticipated.  She has been off the steroids since yesterday and they seem to already be coming out of her system.  

She kept us laughing last week with the things she was asking for... of course the famous lemon chicken, black olives, carrots dipped in ranch dressing and munster cheese.  Jim made a couple "Giant Eagle" trips to satisfy those cravings... anything to help make this easier for our girl!

Last Thursday we were at the clinic for her two doses of chemo in her port and we have a break until next Thursday.  She will again get the same two doses of chemo and then next Friday she starts the steroids again for a second week.  When she finishes the second week of steroids we will be past the first half of this phase.  We are getting there and have been so happy that it hasn't been too hard yet.  

We spent all morning outside and although cool, definitely nice enough for us to be out.  Abbey is still able to run around and is playing like normal.  We feel that so many prayers have been answered these last couple weeks.  Thanks for checking in and praying.  

Also, there was a comment from Jessica on the last post asking for the lemon chicken recipe :)  That gave me an idea....  on the next post I will put the recipe and then if any of you have easy, good recipes you'd like to share, you can put one in the comment section.  Then we can all get some new recipes :)  Thanks for asking Jessica.... and check back soon (hopefully by tomorrow) for our "recipe exchange". 

Another Day Down!!

Abbey & Jack

Today is over.  Yeah :)!!!  I know it's not a good thing to wish time away, but if I am going to be completely honest, we are wishing this phase to be over.  We are on day 5 and have 34 days left of the intense chemo (but who's counting?!!)

Our day started a little rocky.  I did something pretty stupid, which I learned and will never do again.  It is actually the second time I've done this (I did it right after she was diagnosed) so you'd think I would've learned my lesson the first time, but no, I had to do it once more.  We have been giving Abbey her steroids in a couple bites of ice cream and she has been taking it with no problem.  This morning we were up so early to go the clinic that I couldn't imagine talking her into eating ice cream the second she got out of bed (she always just wants a big cup of warm milk with nesquik first thing in the morning) so I decided to just put the steroids, crushed up in her milk.  Well after a few gulps, she noticed I slipped some medicine in there and refused to drink it.  The problem at this point is how much did she get, if any...

So she got extremely upset and our ride to the clinic was one that I would like to put behind us. Not only did we have the milk fiasco, but also had an itching episode.  Let me explain.  This morning I was told by our doctor to put emla cream (numbing cream) on her thighs to take the edge off the shots.  Well a few minutes into our ride the cream started REALLY bothering her and she was itching her legs and crying like crazy.  After a few minutes of wondering what was worse, the itching or the more intense pain from the needles I decided to take the cream off.  I think I made the right choice because she immediately calmed down.

She actually was quite pleasant today considering our rough start.  Our clinic visit went as good as could be expected.  They last minute wanted to check her numbers so we had to quick put the emla cream on her port and let that soak in for a while before she was accessed.  I was worried that 30 minutes wouldn't be enough to fully numb it, but she didn't even flinch.  Her numbers again looked great (Go Bone Marrow!!) and we sat around and waited (I actually read at least 28 pictures books to her) a while for them to get her shots ready.  

We also had a nice, big, white, furry visitor named Jack come to our room (see picture above). Abbey loves dogs so was super excited to get to pet him and get a picture with him.  He was very gentle and it was a nice distraction as we all knew what was to come.  

Abbey took the shots like a champ.  She never ceases to amaze us and again was as brave as could be.  I think I kissed her for about 10 minutes once they were done and was just so happy they were over.  You can be sure I put a huge X over today now that those are done!  After her shots they watched her for one hour for any type of allergic reactions, but she had none so for that we were very thankful!!  Thanks all you pray-ers out there.  Keep up the great work :)  We now have a two day break and go back Thursday for two more doses of chemo through her port. We are almost done with week one of the steroids (3 more days) and so far she seems to be handling them really well.  She did request my famous lemon chicken today (which was her absolute favorite food while on the steroids the first time) so I have a feeling I will be making that everyday now for a few days.  Anything for our brave little warrior :)  Thanks for checking in and we'll keep you posted on Thursday.

Oh, and the doctor told us not to worry about the missed/smaller dose of steroids this morning.  We got back on track tonight with the ice cream and I learned my lesson once (or twice) and for all.

Signs of Spring

The last two days were beautiful here in Ohio.  We spent much of Friday and Saturday outside and enjoyed every second of it.  Every year, once March hits we start really getting the "spring itch" (probably like everyone who lives in cold, snowy, winter states).  This spring will be extra wonderful for us.  First, Abbey will be in Maintenance by the beginning of May.  Also, most winters we feel cooped up in the house, but this winter we have really been housebound and spending these last two days outside was like a breath of fresh air for us.  The kids ran and played for hours.  It was good for all of us!  

Abbey has been feeling pretty good overall.  Today is day three of the steroids and we are seeing a little of their effects, but not too much at this point.  Her appetite has picked up, which is nice because her appetite has been down lately.  It isn't to the point where she is waking up in the middle of the night screaming "chicken" yet and hopefully it won't get to that during this round of them.  The steroids effected her last time in countless ways, the worst being extreme mood swings with going days without smiling or talking to anyone, laying on the couch from morning until night, not being able to walk, obsessive eating (like nothing you've ever seen from a petite little three year old), restless sleeping, weight gain (she went from 29 to 39 lbs. in a month) and she was so swollen she was unrecognizable.  It took a while for all the things that the steroids did to her to slowly come out of her body.  All of her muscle strength came back and about three days off the steroids she was smiling and happy just like before.  She also is back down to her normal weight so all that swelling went down.  We don't anticipate the effects this time being nearly as bad because she is on them for less amount of time with a week break in between.  She is on them right now for 7 days, then off for 7, then on for 7 more.  Then done!! We anticipate the most side effects showing up toward the end of the second week as they build up in her body.  

Today she is still laughing, running around and acting happy for the most part.  We have a medicine calendar on the refrigerator and each day we get through we cross out with a big X. Tomorrow afternoon we will be half way through this first week of them and oh how we can't wait to be done.  Tomorrow we have to go back to the clinic for her to get two shots of chemo into her legs.  They then will watch her for an hour after that to make sure she has no reaction because some kids have bad reactions to this type of chemo.  She had these same shots the week she was diagnosed and she did fine with them, but the doctor said that doesn't necessarily mean she won't react differently to them this time.   Please pray that she will handle these shots well, that she wouldn't be too traumatized by getting them and that she will have no funny reactions.

See our pictures from our days outside by clicking here.

  

Delayed Intensification Has Begun

Today in a nutshell....  Tiring, but good.  

Here's the long version....When Abbey woke up this morning it seemed as if her cold was almost gone.  Her body amazingly did a 180 while sleeping last night and she woke up feeling much better.  As of last night she was so congested that I thought for sure her treatment would be off for today, but was so pleasantly surprised when I woke her up this morning and could feel and hear breath coming out of her little nose.  

When we got to the clinic she was accessed right away to see which way today was going to go and a thorough exam was done on her.  Dr. Bodas said that if her numbers looked good and her ANC was high enough he felt very comfortable with going ahead with her treatment for today.  Her lungs sounded completely clear and he said her cold seemed very mild.  So, we sat and waited for her numbers to come back.  It usually takes about 10 minutes, but somedays it seems like an hour.  Every time someone comes in our room whether it's a doctor, nurse, family life specialist (the door opens often) we stop what we're doing and hope it's good news.  Today Kathy our nurse brought us the good news.  Her ANC was 2640 (it only needs to be 750 to start) and all her other numbers looked great too. We were cheering for Abbey's bone marrow today! :)  It did a great job in getting those numbers up so she could start this phase strong.  

So off to sedation we went.  I was sure to tell every nurse and doctor that came in our sedation room that she had a cold just so they were aware and could watch her closely during her procedure.  She breezed through it like a champ and woke up happy and wanting to be held.  There is nothing better than seeing her bright eyes open and I always gladly scoop her up and hold her tight.  Every time she has a procedure she gets to pick a prize from some bins on the sedation floor.  She always picks a beenie baby and she has quite a collection these days.  She usually picks one, then changes her mind at least five times before finally settling on the one that she wants to take home. 

The people are so wonderful to us at our hospital and they do anything and everything to help our days there be a little brighter.  Abbey has countless new toys that she gets by being such a trooper.  Our house is being crowded out by stuffed animals, but whatever helps this peanut get through what she's been through is fine with us.  We will be forever thankful for how they have held our hands through this whole thing since day one.  We can honestly say that our doctors and nurses have become our friends and we love them for helping get our Abbey better.

So, back to the clinic we went.  Today, Sherry the art therapist came to our room and set Abbey up with some water paint and a paper.  Abbey and I enjoyed painting and it made time go a little faster.  While painting, she had zofran (anti-nausea med.) and two chemos put through her port.  When we were done with our picture she said she wanted to give it to Kathy, our nurse because "she does a really good job at being a nurse".  She then got her "tubey" out and we were free to go. Overall, things went very well and we are thankful to have been able to start this phase today so we are 1 day closer to being done with it!  Tomorrow morning she starts the steroids and will be on them for 7 days.  I will keep you posted on how she does this week.  Thanks for praying for us today.  I felt so covered in prayer from the second I woke up today and can't believe how "o.k." I felt as I went through this day today.  I have been dreading this day for weeks and was so thankful again for this peace that God continues to give as we continue to move forward.  Maintenance... Here we come!!!

In Christ Alone Our Hope is Found

Tomorrow is supposed to end our break.  We will be heading to the clinic bright and early to check Abbey's blood counts and to see if her body is ready to begin this next phase.  She has a cold as of yesterday so depending on how she is feeling/doing tomorrow will also depend if we will move forward or wait a week.  She has a runny nose, is congested and has a little bit of a cough... ugh!!!  This is probably the worst time she could get a cold, but there is nothing we can do about it and have to just trust that our doctors will make the right decision tomorrow in whether she should start this phase, or wait until her body is better.  The main reason they might wait is because she has to get sedated on day 1 of this phase (tomorrow) for her spinal chemo and they may not sedate her while she's congested.    

This week has been tough.  It has been hard to keep the tears back as we think about what is to come. Tomorrow will be hard either way because in a way we just want to start it so we can get it over with.  She is scheduled to get three doses of chemo tomorrow and also should start the steroids tomorrow night.  We need to continually give her back to God.  Like this whole situation, it is out of our hands and we need to constantly remind ourselves that He is in control and there is no better place to be than being carried by Him. 

Please pray for wisdom for our doctors, that they will make the right choice in what to do considering her cold and pray for us all to have a peace no matter what happens. Pray that her body would handle this phase better than expected and for strength for us.  I feel weak in so many ways right now and just want to fast forward two months so we can get into maintenance. We know we will get there and are we are relying fully on our God to help us stay strong for our baby.  Thank you for your continued support.  We will keep you posted on what happens tomorrow.   

The new song I put on the blog is one of my favorites.  It never fails, every time I hear it I cry.  I love to listen to it around Easter, but wanted to put it on here now as our hope is in Christ alone as we go through this.  He is our strength as we continue forward and oh how glad we are that we know Him!