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....