Wednesday, December 31, 2008

Please Keep Praying

Today has been an emotionally exhausting day for us.  Her numbers again were too low to continue on in her treatment and they decided that they want to do a bone marrow biopsy this Friday to make sure nothing else is going on there.  We have to be at the clinic at 8:30 and her procedure is at 10.  She had four of these the first month, but after her fourth one we were so thankful to be done with them (they said she shouldn't need anymore bone marrow tests) so it is hard to be going back to sedation, knowing they again will be looking at her marrow.  They said today that they would be surprised if they see something bad (it is rare that there's a relapse), but they have to do this since her numbers have been down for so long to know for sure.  There are many ways this could go Friday, but we just need to pray like crazy that they see no leukemia cells in her marrow. We know God is sovereign and we continue to trust in Him as we go through this uncertain time. We are trusting that they will find nothing bad and that her body is just taking a little longer than normal to recover from the last phase. Please get everyone you know to pray with us, that her marrow would look great and that her numbers would by themselves sky rocket these next few days.  Thank you...

Sunday, December 28, 2008

Please Pray

Hope you all had a wonderful Christmas.  We had a very relaxing, low key Christmas at our house and it was nice.  The kids were super excited when they woke up to see their stockings full and lots of presents under the tree.  We enjoyed lots of good food, opening gifts and most of all being together.  We are so thankful for God's great love for us, that He would send His son to earth as a baby to be our Savior.  Jesus truly is the best gift of all.  

Last Friday we were back at the clinic first thing in the morning to see where Abbey's numbers were and to see if the next phase could start.  Unfortunately, her numbers were low again (they were the same as they were the week before) so it was very upsetting when we found that out.  Her neutraphils are the number that they look at to see if treatment can continue and they need to be 750.  They were around 200 so it continues to be a waiting game.  We were encouraged by her monocytes (these turn into neutraphils) because they were much higher than they were last week.  The doctor is having us come back on Wednesday to again check her numbers and if they continue to be low on Wed. then they will do a bone marrow biopsy on Friday to make sure there is nothing else going on in her marrow that they don't know about.  Please pray that her numbers will go way up by Wednesday so they don't have to do the bone marrow biopsy and more importantly, that nothing else is going on in her body.  Of course we asked the doctor what they would be looking for in her marrow if they had to do the biopsy and it was very hard to hear.  I have been struggling these last few days with several things and it is so scary for us to think about the possibility of a problem.  Please pray for us as we have this setback and pray that they would not need to proceed with any testing.  So far Abbey's leukemia has been pretty textbook with the way she is responding to treatment so the fact that her numbers have been too low to continue on to the next phase for three weeks is scary.  The doctor told us this can be normal, but the longer it goes on the less normal it becomes.  I would write more, but my heart is so heavy as I write tonight.  Please pray...    

Monday, December 22, 2008

Merry Christmas

This is how God showed his love among us: He sent his one and only Son into the world that we might live through him.  This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins.  I John 4:9&10

With much love from our home to yours, have a very Merry Christmas as we celebrate our Savior's birth :)

Love, Jim, Shelley, Jacob, Abigail & Micah

Saturday, December 20, 2008

Clinic Day

Our day at the clinic was o.k.  She was a trooper like normal in all that happens on our days there.  I added a picture of her in the stroller while we were checking in yesterday.  The ICC is in the hospital and we have to walk through the hospital to get there so she has to wear a mask since we come in contact with many people on the way up to the floor.  She never complains about it and knows that once we are on our floor she can take it off.  The one (and only) time Jim and I have been back to church since she was diagnosed (Jim's parents stayed home with Abbey), she wanted to go with us to church. I explained to her how she couldn't go out yet since we have to be careful that she doesn't get anyone else's germies.  She said "mommy, I can just wear my mask to church."  It was was sweet that she was willing to wear it so she could go to church.  She has been incredibly good about not being able to leave the house though and God has really given her an understanding and acceptance of why she can't go in public.  

So, yesterday at the clinic, they again found that her numbers were too low to continue on in her treatment.  They were up some from last week, but not up enough.  The doctor again said that he isn't too concerned about it and feels they should be up enough by next week.  They are giving her a break from her Bactrim this week (it's a preventative medicine so she doesn't develop pneumonia) because they said that can sometimes cause her numbers to have a harder time coming up.  She will start up on a similar medicine next week.  Please pray that by next Friday her blood would look great.  If it goes on too long they will start to run more tests to see if there is something going on that they don't know about.  Please pray that we don't get to that point.  She has been feeling good though and looks great. Her coloring has been beautiful and we have had a pretty uneventful couple of weeks.  We are thankful that she will be feeling good again all week and especially on Christmas.  We are praying for a very special Christmas for our peanuts.  Jim and I got a little extra this year for them since they've been through so much. 

Although our clinic visit wasn't 'bad' it was overall a very emotionally draining day for us.  I had to fight back tears the whole way home.  Sometimes the reality that we will be making these trips for the next 2 + years is hard to accept.  Jim always has off on Abbey's clinic day, but then usually only has one other day a week off so it made me sad yesterday as I was thinking about how hard it is to spend one of his two days a week off at the hospital.  He had to go back to work this morning and it hardly felt like he was off.  The police department has been wonderful though and very flexible with his schedule so we are truly thankful for that.  He has been able to change his days off so he can have clinic days off and he was supposed to be on afternoon shift for Jan. and Feb., but they are allowing him to be on day shift for those months.  That is a huge praise so I am trying to focus on these things.  After six months, her treatments will be much less intensive and the doctor actually said the kids forget his name those last two years of maintenance.  That's hard to believe, but yesterday I had to keep telling myself that this isn't forever.  We know this is a chapter in our lives and someday we will look back and it will all be over.  Please pray for us to get back on track next week and for them to be able to start the next phase so we can get these first six months behind us.  Also, please keep praying that she wouldn't be sick from the one new chemo that she will be starting in the next phase.  Thank you much....  


Thursday, December 18, 2008

Back to the Clinic

Tomorrow (Friday) we are headed back to the clinic to see if Abbey's neutraphils (infection fighting part of white blood cells) are high enough to start the next phase of her treatment.  Last Friday they were low and they said that she had no monocytes (these turn into neutraphils) so they said they would be surprised if her numbers would go up enough in one week.  If they again are too low, then she will not get any chemo for another week.  It will be nice for her to continue to have this break and not have these new chemos right before Christmas, but it's not good for her numbers to be low because her immune system is low and her body is for some reason not recuperating from the last phase as quickly as it should be (or her body is fighting something off).  We know this is one of those things that's out of our hands so we will just wait and see and trust in God's plan for her this week and accept whatever happens.  

A few days ago I got some new sweatshirts for leukemia awareness.  There's something about wearing an orange ribbon or something to support our Abbey that makes us feel better.  It's almost like I just want to scream on a mountaintop how amazing I think my little girl is and how much I adore her.  She is a trooper and continues to amaze us.  Tonight we told her we were going back to the clinic tomorrow and she actually seemed excited.  We are taking Jacob and Micah with us and Abbey always likes it when Jacob is there to play games with her and make trips back and forth to the toy closet. 

I also wanted to post a couple new pics of the boys.  Before Abbey got sick we used our blog to write about what's new with our family and sometimes I feel bad that I don't mention the boys nearly as much as we talk about Abbey.  As you know we now use our blog to update you all on her progress, but we want you to know that we adore our boys too with all our hearts.  Each of our kids are equally special to us and they each bring us so much joy.  Jacob and Micah truly have been troopers and we are so proud of our little guys.  We have said so many times that we are so thankful that we have three kids as we go through this because we are home so much and it is nice that they have each other to play with.  We have always wanted a large family and we pray that down the road, we can add at least one more Colbert kid to the mix.  For now we are just so thankful for the three amazing kids that we have.  We truly are a blessed family.  

Tuesday, December 16, 2008

Women's Christmas Gala

Last Saturday evening I attended a Women's Christmas Gala at my sister's church.  It was a lovely evening with dinner, live music and special testimony.  The event was sold out and there were 200+ women there.  The whole evening was a lot of fun, but what made this evening extra special was that my sister was the speaker.  She did an amazing job and God is really using her and continues to use our Abbey's story.  Stacey talked on peace and she used three situations/times in her life where she felt and saw God's peace in a powerful way.  The second story that she talked about was Abbey.  She read several portions of the blog and just talked about the incredible peace that God has given us in this situation since day one.  She gave a very accurate description of me and talked about how anyone that knows me, knows that I would be the last person that could handle something like this.  She explained it much better, but her message was clear that it is only by God's grace and peace that passes understanding, that we are getting through this and still able to have joy through this trial.  At the end of the night, the lady in charge of the night had my sister and I, along with my mom and Stacey's mother in law stand up and we all (all 200+ of us) prayed for Abbey.  It was very powerful and I really felt God's presence there that night.  There were so many women that came up to me and told me that they are praying for us.  It was an encouraging night and I was so proud of my sister for allowing God to use her.  I also once again saw how God is using our baby to bring glory to Himself and know it wasn't an accident that they asked Stacey to be the speaker this year while our family is going through this.  

My sister is in the red and the others at our table were some of our dear friends.  As you can kind of see, it was beautifully decorated and a very relaxing atmosphere.  Men from the church served us and my sister's husband Joey took care of our table.  It was a wonderful evening!

Saturday, December 13, 2008

Flashes of Hope

When we got to the clinic today we were excited to see that our pictures from 'Flashes of Hope' had come in.  Flashes of Hope is a non profit organization, dedicated to taking powerful, uplifting portraits of children fighting cancer or other life threatening illnesses.  A few days after Abbey was diagnosed, they came to the children's oncology floor with a few women from a beauty salon and they made Abbey feel like she was a princess by curling her hair and even putting lip gloss on her :). They then took a bunch of beautiful, professional pictures of her and our family.  Today we got a holder with two 8x10 pictures displayed in it and all the proofs.  They also gave us a disc with all the pictures on it and there was a note in there that says we can get copies made from the disc and use the pictures to put on personal websites.  This organization is unbelievable because they give each family this at no cost to the family.  It was such a blessing to be able to have these pictures done of Abbey right after she was diagnosed and when she still had all of her hair and these pictures will continue to be a blessing as we continue going through this.  

These pictures were taken on Monday and she was diagnosed the Thursday before.  She had been through so much already by this point as they began aggressively attacking the cancer the morning after she was diagnosed and look at her face in these pictures.  It brings tears to my eyes to think about what she had experienced those first few days.  She had surgery the morning after she was diagnosed to put her port in, 2 procedures and she was immediately on so much medication.  Doctors and nurses were continually examining her and she was hooked up to an IV 24/7, yet you can just see a peace in that little face. You can't see her port under her shirt with a large needle in it, or the big IV pole that we had to take everywhere with us for almost two weeks, yet she is smiling and looks like any other happy little girl.  It's amazing to me.  Another testament to God's comfort for her and another reminder of His power and love for her.  Those first few weeks are such a blur to us and it is so hard to remember much about them.  It is so comforting for us to see her face in these pictures though and to know now that she was at peace with all that she was going through.  

The other night I spent some time looking back at old e-mails that were sent to us those first few days after she was diagnosed and it was hard for me to read them as my eyes were so blurry from the tears.  I don't remember reading most of them and the outpouring of love that we got during that time was even more amazing then I knew.  I eventually had to stop reading because it was so hard to go back to that time.  Someday I will be able to finish them, but we will keep them for a long time (at least until this chapter of our lives is over) and when needed will look back at them to be reminded of how God comforted us through all of you.  

So I'm sure you're wondering how today at the clinic went.  We were supposed to start phase 3 today and when we got there, they checked her blood and saw that her numbers were really low and not where they need to be to continue on into the next phase.  We are going to go back again next Friday to see if her numbers went up and if they do they will start phase 3 then.  They did say that her numbers looked so low though that they would be surprised if they would come up that much in a week.  They aren't always sure why this happens to some kids, but they did say that her body may be trying to fight off a little virus.  She has had very mild cold symptoms the last week or so, but nothing that would even be considered a cold on a healthy child.  For her though it is enough where her body is really fighting hard to get rid of whatever it is.  They told us to be very careful these next couple weeks with sickness (we always are) because if she would get sick on top of this little thing with where her numbers are, it could very easily put us in the hospital.  

We were really surprised that her numbers were so low today because she has been very active and happy.  She has been seeming so normal to us and playing and running around like nothings wrong with her.  Tonight we seriously spent hours making cookies and she was happy as could be.  Please pray that her body would quickly get over this little cold or whatever it is and that her numbers would come up by Friday.  So the good side of this is that her body gets a break from all chemo (even the oral chemo), but the bad is that it puts us back at least a week (maybe two if her numbers are still low next Friday).  We trust our doctors very much though and know that they know what they're doing.  They did tell us a couple times today not to worry about this and that it is pretty common.  Dr. Bodas always talks about 'bumps in the road' and he assured us that this isn't considered a bump in the road so please continue to pray with us for a completely smooth road as we continue on....   

Tuesday, December 9, 2008

Phase 3 - Interim Maintenance

We have had an 11 day break from going to the hospital.  It has been wonderful and overall Abbey has been feeling good.  She had a few days where she was sick, but other than those days, she almost seems like a healthy little three year old girl.  We were supposed to go last Friday for a blood check, but her numbers looked really good on Monday so they said there was no need to come Friday.  

We are still homebound.  Jim is working dayshift and Jacob goes to preschool three days a week in the morning, but other than that we are home.  One thing about our family is that we are all homebodies.  When Jim and I were young, we both were the most homesick kids ever.  We never wanted to sleep away from home (when we tried to sleep at a friends house our moms would always have to come get us because we couldn't make it through the night) and we'd rather friends play at our house.  It is truly a blessing because I really think God made us this way so we could be content with being home so much during this season of our lives.  When we first got home from the hospital I remember being concerned about Jacob being home so much (we pulled him out of preschool for the first month because of germs and sickness) and Jim was going to the store one day so Jacob went with him.  After being in the store for a while Jacob said 'daddy, I want to go home'.  I was so thankful that he said that and thought it was God telling me not to worry about us not running around and doing activities this winter because our kids just love being home.  For me it has been very freeing to just be able to focus on the kids and Jim.  We have been blessed beyond words with meals and people cleaning our house so I have been so free to just be able to focus on my family.  Those of you who don't go to our church probably won't believe this, but we have gotten a meal every other day since the day Abbey was diagnosed.  We have also had friends from our church cleaning our house every other week.  We have been blessed beyond words in so many ways! 

This Friday we are going back to the clinic for her to start Phase 3 which is called Interim Maintenance.  She will be getting two doses of chemo through her port each clinic visit and we have to go 10 days apart for the next six weeks.  The one chemo is vincristine, which she has had several times before.  She hasn't had it for about a month, but had in several times during the first phase.  The second is called methotrexate.  She has had this one in her spine, but not through her port so the side effects are different.  

The main side effect to vincristine is hair loss so the little hair that she is still hanging onto will come out this phase.  It has been gradual.  Looking back at old pictures is hard for us because we are reminded of how her blonde hair was and how different she looks now.  I don't really notice that she looks sick or feel like she looks very different from before until I look at pictures from before October 2nd.  I asked my sister the other day if we took her in public, if people would be able to tell she's sick.  Stacey gently said that she hardly has any hair left.  I think I realized at that point that I just see Abbey and I don't see the sickness.  We were worried about how Jacob would handle her loosing her hair, but we really feel like he doesn't even notice and also just sees his little sister.  The way that God has worked out so many things that worried us at the beginning has been amazing.  He is so good!   

The methotrexate will also be administered through her port.  The doctor told us that nausea and vomiting is a common side effect to this one, so please, please pray that her body handles it good and that she doesn't have that side effect.  I think nausea and vomiting is the very worst side effect and when she is sick like this it's heartbreaking.  They will give her zofran before she gets this one and we also have it at home to give her if need be, but please just pray that she isn't affected like that by it.  

She will not have a spinal chemo for another month (yeah!!) so we are so happy to have a break from the sedation unit.  Last time she was put under sedation, we really felt like we couldn't go through this part of it anymore.  She had been put under sedation every Friday for 9 weeks and each time it was so emotionally exhausting for us and we were so tired of leaving her in that room while pacing the halls waiting for it to be over. She will continue to have spinal chemo throughout the treatment, but not nearly as much as she's had it in the past.

Thank you for continuing to keep up with our story and Abbey's journey.  Words cannot express how thankful we are for this amazing support system that God has given us.  Your words to us through comments, e-mails, cards and notes help us get through every day.     

Saturday, December 6, 2008

Wednesday, December 3, 2008

So last night I quickly stopped writing when Abbey woke up so I wanted to take a few minutes to update you on how she's feeling today and also finish my thoughts from my post. Abbey slept o.k.  She got up once more complaining of belly pain so I ended up sleeping with her.  She woke up this morning feeling normal (so far) and smiling.  She drank her milk like normal and was dancing to Backyardigans a little while ago so I'm not quite sure what was going on in her little body last night.  Things can change so quickly and with all the medications that she's on, it's hard to really be able to pinpoint what side effects are coming from what medications.  It's also really hard for her to communicate how she's feeling.  Sometimes she just says she feels yucky so we do our best to figure it out, but sometimes she just wants to be held and for us to stop asking her questions.  Poor baby!  No fever though and overall seeming pretty happy.

I was talking about how well Abbey handles her treatments at the clinic.  Monday was the eighth time in two months that she has had to be put under sedation for her spinal taps.  She has had countless port accesses, thorough exams and has taken or been given through IV more medication than I can even keep track of.  In the midst of these trials, we are still finding joy, which is so amazing to me and can only be attributed to God's faithfulness to us.  Anyone that knows me, knows how protective and sensitive I am to my children.  I was in a Bible study with my dear friend Marcie about a year ago and one day in the study we talked about our biggest fears.  My number one fear was that something would happen to one of my children.  I would have never thought that I could survive going through something like this.  I seriously would have a hard time falling asleep at night if one of my kids had a cold because I would feel so bad that they couldn't breath out of their nose.  So, I say all this to say that it is amazing how not only can God carry us all through trials in our lives (sometimes the greatest fears ever), but we can still find joy during these times and we have seen good coming out of what can be an excruciating situation.  Two and a half months ago, if someone would have told me that we were going to have to go through this, I think I would have been so mad that God would do this to us, but now that we are going through it, we have learned so much about His love and comfort for us.  I am not saying it's easy by any means or that I'm glad we are going through it, but I want to encourage you to trust Him with every area of your life.  I know it's hard.  I am learning though that He truly does care for us and comfort us through what seems like the impossible.  

Tuesday, December 2, 2008

It is hard to believe that it has been two months today since Abbey was diagnosed.  I don't think there are words to describe all the emotions and ups and downs that we've experienced, but God has been faithful since day one and we know He will continue to be faithful as we continue on.    

I have been looking forward to this time all day.  I am sitting in a perfectly quiet house, in a dim room with only the lights from our Christmas tree.  Abbey fell asleep on the couch next to me so as I sit here I love being able to look at her sweet little face while she sleeps.  I just finished praying over her because she hasn't been feeling well tonight.  She was laying on the couch a good amount of the night and was complaining of belly pain and saying she felt like she was going to throw up.  I gave her some nausea medicine a little while ago and it seemed to help since she is now sleeping peacefully.  I took her temperature several times also (I get a little obsessive sometimes with it and have to make myself wait 30 minutes in between taking it) and she wasn't running a fever so I am praying that one doesn't come on as she sleeps tonight and that she would wake up in the morning feeling good.  Jim went out for a little bit tonight with our pastor and another good friend from church so I have some time to post some new things.

I first wanted to say thank you so much for all your comments a couple posts ago.  We really enjoyed reading things about you all and getting to know you.  Many of you have children that are right around the same ages as our kids so we have an instant connection and in a way we know you can kind of imagine what we're going through.  The way you have reached out and encouraged us has been amazing.  We now know that others of you are also being affected by cancer, or other serious illnesses and as I sat and read your comments I prayed for each one of you.  We feel your pain and want to be here for you guys as you've been here for us.  Please continue to share ways that we can pray for you as we continue on.  

I have been itching to post the pictures above of Abbey's Christmas tree and her with the orange ribbon.  We asked her a couple weeks ago if she'd want to do an all orange tree this year for her bedroom and she liked the idea, so we decorated it all in orange with an orange ribbon on the top (for leukemia support and awareness).  We have felt a burden to do something for leukemia awareness/support so please pray for us as we are trying to figure out what that might be.  We know God has a plan for why we are going through this and we are open to whatever He wants us to do, both now and in the future.

The last couple weeks, Abbey has been feeling really good (aside from whatever was going on tonight).  Our clinic days have been going well.  We went yesterday and the way that Abbey handles all that goes on while we're there is amazing.  It can only be by the peace that God is giving her that she can go in there with a smile and get through our days there with such grace.  While my in-laws were in town, they came with us to the clinic the one day and that day I realized once again how amazing it is to see her go through it. My mother-in-law was in tears as she expressed her disbelief in seeing how Abbey handles all that she has to go through when we're at the hospital.  It is emotionally draining and exhausting, but also a time where we feel God's presence with us and see how He is getting us through this difficult time.  

**A little while ago, while I was writing, Abbey woke up crying and feeling very sick.  She is now sleeping again so please pray that she would be feeling better tomorrow... we're not quite sure what's causing her to be feeling so sick tonight.  


Monday, December 1, 2008

I know it's been forever since we've posted anything.... Abbey has been feeling great and we had a busy week at home, enjoying our time with Jim's parents.  
Tomorrow (Monday) we are heading back to the clinic for Abbey's treatment so as much as I'd love to spend some time on here, we need to get some sleep.  There is lots I want to share, but I will have to wait until tomorrow (we loved all your comments on our last post, but I will elaborate tomorrow).  For now, I am going to leave you with a few pictures that we took of the kids tonight after finishing our Christmas decorating.  We love, love, love this time of year and are so excited that it's here....

Friday, November 21, 2008

Quick Update

We got home from the clinic this afternoon around 2:00.  It was a long day and we are all exhausted. When we got there this morning she was not running a fever.  Her heart rate was high, which it's never been so they wanted to see what was going on with that. They gave her IV fluids because they thought it could have been from dehydration (I felt pretty confident that it was that b/c she hadn't eaten or drank hardly anything yesterday).  They gave her the fluids and her heart rate came back to normal.  That was an easy fix and we were grateful that they got that taken care of quickly.

They decided not to do her spinal tap chemo today since we are still waiting on the results from her blood culture.  They need to wait to see if it's an infection in her blood, and if it would be that they would have to take care of that first before getting her spinal chemo.  They aren't thinking it is that (they told us that fevers usually end up being a viral thing), but they always have to be very careful in not missing anything so they are going to continue to watch the blood and treat her with antibiotics.  We will be going back to the hospital tomorrow at 8a.m. for her to have her second dose of antibiotics, just to cover her until we know for sure that it isn't a blood infection.  If nothing grows from the culture, then she will have her spinal chemo this Monday.
She's been through a lot these last two days and we will again be at the hospital Saturday and Monday so please pray for God to fill us all with His peace as we get through these next few days.  Please pray that nothing grows in the blood culture and for no returning fever.  She has also been having stomach pain so please pray that would subside.  She is having some issues with pain where she pees (I'll spare you the details) and she was given a medication today to clear this issue up, but as of now it hasn't kicked in and she's pretty uncomfortable and miserable.  Please pray that would be cleared up by tomorrow.  Lastly, we all need a good nights sleep, so please pray for a really good nights rest for all of us....  

Grandmom and Granpop will be here by tomorrow evening so we all have that to look forward to.  Pray for an extra special week for the kids as they get to have two of their favorite people here for a while.  We will spend Thanksgiving at my mom and stepdads house so we are looking forward to getting out of the house some and being with our families.  Then, the day after Thanksgiving, we are going to be getting our Christmas decorations out and that's always an exciting day for us.  We will be decorating our tree while listening to Amy Grants Christmas Soundtrack (that was Jim's favorite as a kid so it has become a tradition for us while Christmas decorating :) and drinking hot chocolate with marshmallows.  The kids also want to make Christmas cookies this week so we will be sure to do that one day.  We will be sure to post some pictures this week of the kids doing some of these activities. 

One more thing.... tell us who you are... Whether we know you or not, let us know that you're reading and tell us something about you and your family.  And if you have a special prayer request, let us know.  Yes, we are praying a lot (continually) for our Abbey and family as we go through this, but we also continue to pray for many other needs and want to know yours.  We look forward to learning things about you all.  Have a great weekend!    

Hi friends.  We feel so connected to you guys and when I don't write for a couple days, I'm itching to get back on and let you know what has been going on here.  We know many of  you well, but others we only know from your comments or from being a follower of our journey.  We consider you all our friends though.  Everyone with kids knows that when someone does something for one of your children, you instantly love them and think they're so great.  There's something about people investing into your kids, whether is by praying for them, or sending words of encouragement their way, that gives you this bond with them.  You just look at people differently, with this sincere appreciation when they've cared for your child in any way.  We know you guys are praying for Abbey. We love you for that.  We know your hearts have broke with ours as we've had hard days.  We have seen you praise God with us as we've had many victories over these last seven weeks. Abbey has looked at hundreds of pictures colored and drawn for her and we have read countless cards and Bible verses to her that were given to us by you guys.  We are forever grateful that you guys have carried this heavy burden with us, and have been there for us over these last seven weeks.  Thank you for loving our Abbey.  Thank you for being our friends. 

We had a small bump in the road last night.  She had a low grade fever that was hovering a little above 100.  The doctor had us take her to the ER to get her blood checked and for her to get an antibiotic in case she has an infection in her blood.  We will not know for a couple days what the blood culture shows, but we were able to come home after she got her antibiotic.  We got home at 2 a.m. last night and today is our clinic day so we basically took a nap and just got up to go right back.  We have to be there at 8:30a.m. for a blood check and then we will be off to sedation.  Her procedure is at 10:00a.m. We don't know exactly what today will look like after her procedure.  They may give her another antibiotic due to her low grade fever.  Please pray that they would find the source of it quickly and that it wouldn't end up being an infection in her blood or any big deal.  

Other than that last night, things have been going well.  She had a good week and has been feeling pretty good.  Her oral chemo is starting to kick in with some side effects, the worst at this point being that her appetite has really diminished and she isn't wanting to eat much of anything at all.  Please pray that we would at least be able to get her to eat a little at each meal and that she would continue to drink her milk in the morning and fluid throughout the day.  It's hard to see her not wanting anything to eat and are just praying for her to be feeling as normal as possible on this new medication.  

We are looking forward to this upcoming week.  On Saturday, Jim's parents are coming into town and they are staying through the following Sunday.  We are so excited for them to be here and know they are anxious to see the kids (and us too).  I know it is hard for them to be so far away as Abbey goes through this.  To not get to see her smile and play and to not be able to sit with her when she isn't feeling well.  Abbey has a very special bond with her grandmom and it is good for her when she's around. We're sure Grandmom and her will spend hours on the couch snuggling and reading books.  It is their favorite thing to do together.  Please pray for a good weekend and week for Abbey. That she would be feeling really good.  

With Thanksgiving right around the corner, we have so much to be thankful for.... of course our sweet Abbey tops the list (along with our two favorite guys).  Blessings to you and your families...

Saturday, November 15, 2008

Orange Ribbons & Liquid Gold

Our clinic day on Friday was uneventful and everything went as planned.  Her blood looked great.  Her neutraphils were well over what they needed to be and all her counts looked really good.  She had her spinal tap and chemo in her spine and then she got her chemo through her port.  She was in good spirits the whole day while at the hospital, but is always excited and ready to come home by the end of our time there.  

She started a new oral chemo that she will be taking everyday for the remainder of her treatment (the next 2 years, 5 months).  It is once a day, in the evening and she needs to take it on an empty stomach.  We have to be very careful in the handling of this medication and we need to wear gloves when holding/crushing and giving her the medicine.  They explained that since it is chemotherapy, we need to make sure that it is not being absorbed into our skin. We also cannot wash the utensils or dishes that come into contact with the medicine with any other dishes or utensils that are used for other things so it is kind of stressful right now as we get all of this down to a science.  Please pray that we would get used to this new part of our days.  It is hard to think that we have to give her this every day, yet it is so powerful that we have to wear gloves while handling it.  

On a funner note, Abbey has quite a hat collection so far.  My sister, Stacey knit the matching hats in the pictures above for Abbey and I and she also knit the orange ribbons (they're for leukemia awareness/support) on them.  A good friend of ours from church has also knit some beautiful ones for her and we have gotten several other store bought cute hats and beautiful scarves from people.  We are thinking that a 'hat tree' to put in her room would be a cute idea so her hats can be out since these will be a new important part of her wardrobe :)  

This month should be easier than last month for her body.  We will go in every Friday for her to have her spinal chemo and she will also be on her oral chemo everyday.  We are so thankful that we have not had to be admitted to the hospital even one time yet for a fever or illness. When we left the hospital, they said to expect for her to get fevers and/or infections at times during her treatment, yet she only had one very low grade fever one night that worked it's way out and she has never had to be admitted back into the hospital.  

I think part of that has to do with this story that I'm going to tell you.  This is one of those 'God things' where I really feel like this was and is totally from Him.  I will try to make this short (I know I get a little wordy sometimes).  Micah was 9 months old when Abbey was diagnosed and I was still nursing him.  I had never left Micah for more than 3 hours ever in his life since he would not take a bottle so the night that Abbey was diagnosed I knew we were going to have to change that and switch him to bottles and formula since we were going to be away from him a lot (I actually thought we were going to be living in the hospital for 2 1/2 years the first night we were there and did not know that she was going to be outpatient until about 4 days into our time there..... that was an amazing blessing when I found out we were actually going to be going home in a week and a half, but that's a whole other story....).  Anyways, my sister's neighbor is a lactation consultant and Stacey called her to tell her what was going on with Abbey and to get some advice on switching Micah to a bottle.  The first thing out of the lactation consultants mouth was "that's so awesome that she is nursing the baby... breastmilk is amazing for cancer patients."  Stacey told her that the baby wasn't the one with cancer, but our middle child.  She proceeded to tell my sister that it would be so wonderful if I could pump and give Abbey some of my milk everyday.  She said that there has been a lot of research done on the positive affects of breastmilk for people with cancer.  She told her that there is some research being done in Sweden and they are finding that breastmilk kills cancer cells (we now have the article and it's pretty interesting).  So, when Stacey told us what she said, I decided to continue nursing Micah (even though it was really hard while we were in the hospital since he didn't stay there with us) so I could give my milk to Abbey (and of course Micah).  I give her 3 ounces every morning, mixed with regular milk and I add Nesquik. She has no idea it's in there, yet we truly feel that it is keeping infection and fevers away and possibly even helping in other ways that we don't know (only He knows :).  If God did not lead Stacey to call her neighbor that night, I would have probably weaned Micah (which I know I would have regretted) and would not be able to be giving Abbey 'Liquid Gold' every morning (at least that's what Jim and I call it) :)  God is healing her body, and we are so thankful....  You can be sure that when I get to Heaven I'm going to ask Him if my milk helped in any way.  One things for sure... we know it can't hurt and we'll do anything to help!

Thursday, November 13, 2008

Phase 2

Tomorrow (Friday) we are heading back to the clinic for Abbey to start phase 2 of her treatment. It is hard to go back after she's had this break for a couple weeks and since she has been feeling so good lately, but as much as we hate the chemo, we know we need to keep trucking on so she can beat this completely. What's so hard about going is that they need to make her sick for her to eventually get better.  We love that there is a treatment for leukemia and that they are able to kill cancer cells, but we hate the side effects that it has on her body.  It's a love/hate relationship and it is a ride with many ups and downs, but we are confident that one day this will all be a memory and we will all have grown in ways unimaginable.    

We have to be there at 9:30 a.m. for her port to be accessed, blood to be drawn and checked (please pray for her neutraphils to be above 750) and for her dose of chemo to be administered via IV.  We then have to be at the pediatric sedation unit by noon for her to have her spinal done to administer her dose of chemo in her spine.  She will not be able to eat anything after tonight so please pray for the morning to go quickly and for us to be able to distract her with enough things to help get her through the morning.  No matter how many times we go to sedation, it never gets easier.  Each time I hold her while they put this creamy white medicine into her port and she quickly falls asleep in my arms.  I then have to put her on a sterile table and we leave the room.  I know she is comfortable while she is having the procedure done, but it's so hard to leave her in the room and to not be by her side for that time.  Whenever I am not physically with Abbey and seeing her (which isn't much) I find myself feeling anxious and just wanting to see her face and know exactly what is going on.  Please pray for our thoughts each Friday while she has her procedures done, that our minds wouldn't start spiraling....  Once it's over and we get to see her again, we are always so relieved and she always makes us smile.  Her first words are 'I'm hungry' and she usually wants cheez-its.  

My sister Stacey has been coming with us every Friday and she has been so creative with keeping Abbey busy and happy while we wait for our time slot for her procedure each week.  Stacey is so good with kids (both hers and everyone else's) and she keeps Abbey (and Jim and I) entertained much of the time that she's with us.  She draws pictures of everything and anything you can imagine and makes up games that keep us all smiling.  I don't know what we would do without her and my mom as they truly have done so much for us.  I have called my mom in the middle of the night more then once because I either needed someone to talk with, cry with or pray with, or was nervous when Abbey was so sick and she jumped out of bed and rushed right over.  She stays with the boys each time we need to go to the clinic (along with my Aunt Patty on Fridays... thanks Patty :) and we can rest in the fact that our boys are very well taken care of when we aren't with them.  Between our family and friends, we have the most amazing support system and we truly are thankful and don't know what we would do without all of you.

Abbey has been talking a lot the last couple days about her sickness and different things that she remembers from what she has been through.  She has wanted to talk about our stay in the hospital (she says our hospital room with our bed), times when it was "owey" and times when it didn't hurt, times when she had fun and times when she felt stinky.  It is amazing how she is remembering things from our stay in the hospital and even talking about some of the days when she was really sick here at home.  She is starting to understand the difference between being in the hospital and just going to the clinic for a day to get her medicine.  It has been really good for us to hear her start to process some of this and see that she can smile while talking about it... even the hard stuff.  

God uses different things at different times to help us get through each minute, day and week of this journey.  He has used Abbey in so many ways these past couple days and it's so amazing to see a child's faith as we talk to her and ask her questions.  She knows God loves her, cares for her and is healing her and that is something that she never doubts.... even for a second.  We pray for faith like a child when we start to doubt or get scared and it's neat to see Abbey, a three year old little girl never hesitate when we ask her who made her, who cares for her and who's healing her.  Lord, help us to have faith like a child as we continue on in this journey.     


Sunday, November 9, 2008

Haven't Posted in a While...

Abbey has been feeling great.  We have been busy doing normal things around here, which has been so wonderful.  Abbey got a lot of new things (from many of you) while we were in the hospital and many packages of goodies since we have been home so we have spent much of these days looking at pictures that were made for her, playing with new toys, coloring in her new coloring books, playing new games, reading new books and snuggling on the couch while watching cartoons and videos.  

This past Friday was our clinic day and she was supposed to start the next phase of treatment.  During the next month, she will get two doses of chemo every Friday (one through her port via IV and the other by spinal tap) and she will be on a new oral medication everyday.  When we went on Friday, after checking her blood counts, they found that her neutrophils (it is the infection fighting part of our white blood cells) was too low to continue on with the next phase.  They said it was normal and not a big deal, so she got another break this week.  In the long scheme of things, it puts us back a week, but it is nice to see her get this break while she is feeling so good.  Next Friday when we go back, they will again check her blood and they are anticipating her numbers being higher so they can continue on in the treatment.  Although this break for her body is nice, please pray that her numbers come back by next Friday because if this would go on too long, they would have to do some additional testing (maybe another bone marrow biopsy) to see what is going on.  Everything has been going so smoothly so please pray that this wouldn't turn into a bump in the road.  We feel pretty confident that next month will be easier than this past month and that there are less side effects to her new oral medication.  Amazingly, she is handling the chemo really well.  We saw many more side effects from the steroids then from the chemo this past month.

Abbey's strength is slowly, but surely coming back.  She is walking better and able to get on and off the couch by herself.  She can't stand up from a squatting position or sitting position from the floor, but she calls for us when she's stuck and usually laughs as we help her up.  Her hair is very thin at this point, but she is still hanging on to some of it.  When Abbey was a baby we always thought she had the most perfectly round, beautiful head.  She had hardly any hair until 18 months and then she got this full head of beautiful, blonde hair.  Every time some of her hair comes out, we think 'God knows exactly how many strands are on her head now' and we are thankful that He knows our Abbey that intimately.  She is beautiful inside and out, and we know someday her beautiful hair will grow back.  Until then, we will just enjoy no distractions from her big eyes and joyful smile.    

We haven't talked much about the boys...  Jacob is doing well.  We have kept him home from preschool since she was diagnosed, but are thinking we may put him back in school soon.  I talked to the director of the preschool yesterday and she is going to send a letter home to his class asking parents be mindful of sickness by trying to keep their kids home if they are not feeling well.  There are 8 kids in his class so it is small and they are very diligent in hand washing and wiping things down.  We don't want Jacob to start feeling like he is being punished by this and we want some sort of normalcy back in his life right now. He loves school and has told us several times that he misses his teachers and friends. He has been amazing through this whole thing though and we are amazed at his gentleness and kindness toward Abbey.  He is quiet when he needs to be and very accepting of these changes.  We know God is using this in his life too as He is in all of our lives.  None of this will go to waste.  Micah is getting big.  He is crawling and getting around really good these days.  He is a very happy, 'go with the flow' baby who smiles a lot.  He's a joy to be around.  Jacob and Abbey continually entertain him and he too makes them smile with his contagious laugh.

Jim and I are holding up pretty well.  The other night I had a small break down.  I checked on Abbey around 11:00p.m. and noticed her head was wet with sweat (night sweats) and that was one of the things that started happening soon before she was diagnosed.  I had taken her to the doctor 3 times and kept saying "something is wrong... I know something more is wrong than a cold or virus".  At first they said it was just a virus, then a sinus infection (and that the night sweats were from that) and finally, the third time I took her in, they did blood work and found that something in her blood was wrong.  Well, when I saw the sweating the other night I physically got sick (that was the same way I felt each night when I would go in her room before we knew what it was).  After her numbers had not come up on Friday and I saw the night sweats my first thought was that the leukemia cells were coming back.  I immediately had the doctor paged and he assured us that this can be a normal sign of her body coming off the steroids.  He was not concerned and he talked us through it and calmed our nerves.  

After getting off the phone with the doctor, we went up to bed and Jim read Isaiah 40. It was so comforting to us.  The whole chapter is so good, but verse 28 says 'The Lord is the everlasting God, the Creator of the ends of the earth.  He will not grow tired or weary, and His understanding no one can fathom.'  Verse 29 'He gives strength to the weary and increases the power of the weak.'  Verse 31 talks about people who hope in the Lord will have renewed strength and they will soar on wings like eagles.  Jim and I then prayed together, cried together and felt God's presence in a powerful way that night in our room.  We were strengthened by His word and by spending that time with Him.  I love my husband so much and feel so blessed that when we are overwhelmed and worried, he immediately takes us to the only place where there's power and hope. Please continue to pray for all of us.  That we would look to Him through these ups and downs and that He would continue to carry us.    

Tuesday, November 4, 2008

Quick Update

Abbey had a great day today.  Her best in a long time.  She was smiling pretty much from the time she woke up and laughed at little things all day long.  We think she was making up for not smiling or laughing for a couple weeks because she had a lot in there that came out today.  That sparkle in her eyes was back.  It was a gift.  We will never take that smile or sparkle for granted again.

The nurse called around 4:30 to let us know that at that point they didn't see any signs of infection in her blood, but she explained to us that they will allow the blood to be in this container thing again overnight to see if anything grows by tomorrow.  I guess the earliest they look is after 24 hours, but it is better to wait longer (does that make sense?).  She has had no fevers today so we feel pretty confident that she is o.k. We're not sure what that on and off fever was for a couple days, but we are just thankful that it's gone.  The nurse will call us again tomorrow.

Abbey wanted to play today.  It is the first time that she wanted to get off the couch and go into other rooms.  She is very weak and having a really hard time walking.  She was walking a little in the morning (while holding my hands), but after a few minutes her knees starting getting weak and she would fall to her knees then bottom.  She wanted so badly to get around that at one point she was crawling.  It was sad to see her so weak, but encouraging that she was determined to play today and get off the couch.  Some of the side effects from the chemo is muscle weakness and joint pain.  She also hasn't walked at all in weeks so her muscles have just really weakened from no use. The nurse gave me some exercises to do with her legs to help strengthen them.  We did some tonight and she thought they were pretty cool.

Tonight is also the first night that she has wanted to sleep in her beautiful, new bedroom.  Jim and I have been sleeping in the living room on an air mattress and she has been on the couch, but earlier today she said she wanted to sleep in her bed tonight.  She is sound asleep in her princess bed now and we think it's pretty fitting since she's our little princess :).  We'll see if she makes it all night in there alone (or if I make it all night not being right by her side).

Thank you again for following our journey and for praying with us. We feel blessed beyond words by you.  We have been covered in prayer and very well taken care of by our family and friends and we couldn't be doing this without all of you.  We have seen God at work in many lives through our little Abbey's story.  She is going to have an amazing testimony to share one day.......  

Bye for now... we're off to sleep in our bed...

Monday, November 3, 2008

Abbey's Back

It has been a few days since we've posted anything so I'm going to spend some time putting my thoughts in writing and let you all know what has been going on here.  I have been looking forward to a quiet house so I can write about Abbey's amazing progress along with a couple small bumps in the road.

Friday we posted our awesome results from Abbey's bone marrow biopsy.  We still are flying high with that wonderful news.  It took her body a few days to start showing some relief from the steroids.  Friday night she was up 9 times through the night going potty (but whose counting). She had so much swelling and water retention from being on the steroids that once we stopped them there was a lot of fluid coming out of her little body.  She was pretty miserable Saturday and Sunday and her body seemed to be having a hard time adjusting.  Sunday evening I took her temperature because she felt warm.  Her temp was 100.0 and it had never been that high so I got nervous.  If it reaches 100.4 we have to call the doctor.  To make a long story short her temp was hovering around 100.  She also started acting sicker and sicker as the night went on.  She couldn't pick her head off her pillow and every time she had to go potty she would cry the whole time because she wanted to lay back down.  I called the doctor to let him know what was going on.  He told us to watch her closely through the night and if it went up to 100.4 we would have to take her in.  The night was rough.  I laid by her, pretty much looking at her all night and taking her temp often.  Jim had to go back to work Monday so he slept upstairs for the first time and Abbey and I were in the living room.  We made it through the night and first thing Monday morning we went to the clinic.  We were scheduled to go in Monday for a blood check anyways, so we just went a little earlier to address her low grade fever.  

She woke up feeling better.  We had to leave for the clinic soon after she was up.  Our day at the clinic was long, but good.  Since Jim went back to work, my sister Stacey came with us and Jacob came today too.  He started to get upset today when we were leaving to go and he told me that all he wanted to do was sit on my lap on the couch all day, so I asked him if he wanted to come and he was very excited.  It was good for him and Abbey.  My mom stayed home with Micah.  We got there at 9:30 a.m. and didn't leave until after 5 p.m.  They checked her blood right when we got there (she has been so brave with her port accessing) and saw that she needed red blood cells.  She was in such good spirits.  She was smiling and wanting to go in the play closet on the floor to bring toys and games back to our room.  She even walked the hall a little. We were amazed and thrilled at how good she was feeling.  

They hooked her up for her blood transfusion and we spent hours playing Battleship, Chutes & Ladders, reading books, drawing and watching videos.  My sister and I were so happy.  We enjoyed seeing her like this and watching her and Jacob interact.  It was wonderful to see her smiling and playing.  It is amazing how resilient kids are.  She was so sick the night before and has been through so much this month, but she is recovering and looking good.  Words cannot describe the joy it brought me to watch her today.  At one point the nurse was doing an exam on her and Abbey was willingly doing each thing the nurse asked her while smiling.  My eyes filled with tears as I watched.  For the first time in a long time, I felt like she wasn't in pain, uncomfortable or miserable.  It is refreshing and encouraging to see.  She is a brave little fighter and even though she had to sit all day hooked up to an IV drip, she was happy and playful.  

Toward the end of her blood transfusion, her temperature was hovering around 100 again so they decided to give her an antibiotic and send her blood away for a culture. At one point they were talking about admitting us to the hospital, but it went down after the antibiotic was given so they sent us home.  They will call us tomorrow and let us know if they found any infection in her blood.  If so, they will admit us tomorrow to do more antibiotics and watch her for a couple days.  

Please pray that they would find no infection in her blood and that if this fever returns, that they would find the source of it quickly.  Although we have this little bump in the road (that's what our doctor calls anything that's not 'normal') we are so thankful that she is feeling better, smiling more and even laughing easily.  

We love this girl so much, it hurts sometimes.  We need to continually give her back to God.  Sometimes I see myself holding Abbey (actually all three of my kids) so tightly in my hands and I have to close my eyes and envision God prying my hands open and telling me "Trust me Shelley".  I then will picture my hands wide open with them all in my hands, holding them up to God.  God blessed us with these amazing little people, but He didn't intend for us to do this alone.  He is longing to guide us each step of the way.  He has taught us more this month then we've ever leaned in our Christian walk and we trust Him.  At times it's hard and scary, but we trust Him.      

Friday, October 31, 2008

Abbey is in Remission!

We just got off the phone with the doctor, and we are thankful to let you all know that there were 0% cancer cells found in Abbey's bone marrow today!  Abbey is exactly where the doctors want her to be at this point.  They explained to us that although she still has a long road ahead with treatments, chemo and medications, the cancer is under control (in remission) and she is responding exactly as planned to the treatments thus far.  God answered all our prayer requests for today... every one!  

The doctor let us stop the steroids today (which was a day earlier than we expected) and she will have a break this week from most of her oral medications.  They told us that she should start feeling more herself, sleeping better and eating more normal once the steroids start to come out of her body.  We can't wait to see her smile more, hear her laugh again, watch her play, and just be our Abbey. 

The next phase called 'Consolidation' will begin next Friday.  We will be back at the clinic on Monday to check her blood and see if she needs any transfusions and then Friday she will have two more doses of chemo.  This month will be a little easier than last month.  Although she will continue to have about the same amount of chemo, she will not be on the steroids at all so she will have less day to day side effects. 

Tonight we are thanking God for how far we've come in one month and are praying for God's strength as we continue on. There are no words for Jim and I to express what it feels like to see our little girl go from 95% cancer cells in her bone marrow, down to 0%.  Our hearts are slowly being pieced back together and we are not looking back, but looking forward to see how God is going to continue to work in her body and in our lives.    

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, not lacking anything.
James 1:2-4