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.     

Beautiful Inside and Out :)

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.  

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.  

  

    

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....

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...

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!

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.     

   

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.    

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...

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.      

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

Friday

This Friday is a big day for us.  Abbey will have her bone marrow biopsy and spinal tap. They want the cancer cells in her marrow to be less that 0.1%.  Her scheduled time for the procedures was set for 1 p.m. which is late since she can't eat until it's over so we talked to our nurse last week to see if she could try to move it up.  This morning I was praying that the time would be moved up to 11 a.m.  We have to be at the clinic two hours before the procedures for them to check her blood and for the doctors to do a complete physical on her so 11 was the best time we could have gotten since the clinic doesn't open until 9.  Well, this afternoon our nurse called and said that Abbey's procedure time was moved up to 11 a.m.  I thanked her and told her that I had been praying for that exact time.  That was one of those moments where we were comforted by how intimately involved God is in this situation.

Friday is her last day of this first phase of her treatment which is called 'Induction Therapy'.  Friday will also be her last day of the steroids so we are very much looking forward to her being off of those.  The nurse told us last week that Abbey will start to feel much better once she is off the steroids.  We are so excited for her to feel a little more like herself.  Saturday morning couldn't come soon enough.  The next phase of her treatment is called the 'Consolidation Therapy'.  We are so thankful that this first, most intensive phase is over.  The cancer cells in her body have been aggressively attacked and she has been through a lot.  It has been hard, but we are so thankful that her body has responded so well and that her cancer cells have gone down significantly (and hopefully they will find none in her marrow on Friday).  It's also been amazing that she has had no fevers or other serious issues up to this point.  We feel blessed.

We're not exactly sure what the next month is going to look like for her.  The doctor told us last Friday that they would be able to tell us what medications she will be on and what her chemo will be like once the test results come back.  We feel pretty confident that she will be under 0.1% so if that's the case then next month looks easier than this month, but until we know for sure we are trying to not look too far ahead. Jim asked if we will know the test results Friday night or if we might have to wait again until Monday.  The doctor said that it is out of his control so we might know Friday night, but we may have to wait over the weekend.

Please pray with us for the following things...

*  For Abbey on Friday morning that she will be o.k. without eating before her procedures.

*  For her blood to look the best it's looked so far.

*  That the procedures would go perfectly smoothly and it would all be routine.

*  That she would come out of the sedation easily and feeling good.

*  That her bone marrow would have 0% cancer cells.

*  That we would get the results Friday.

*  That she would start feeling better on Saturday after stopping the steroids.

*  For a good week next week.  For her to feel good and have more energy and for her to be happy and comfortable.

Thank you guys for praying specifically for her and us this Friday and next week.  We feel so blessed to have so many of you asking for us to give you specific prayer requests.  We know you all are praying with us and God has been faithful and has answered (one of these days we are going to post a list of all the answered prayers so far :)  It's amazing!

Here is a verse that we have been reading often:

Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen.  For what is seen is temporary, but what is unseen is eternal.  

2 Corinthians 4:16-18

We will post the results once we know...

Our Weekend

Friday was our clinic day.  Abbey was a trooper and did a really good job getting her port accessed.  Her blood looked good so she didn't need any blood or platelets.  Her platelets were on the low end of normal.  They haven't been that high since she was diagnosed so we know her bone marrow is starting to produce healthier blood on its own.  She had her chemo and seemed o.k. with it while we were there. Jim ran into another family that was on the floor in the hospital when we were there and they have a three year old little girl named Leah who was diagnosed with ALL one week before Abbey was.  Jim saw Leah and he said she is very swollen and sick like Abbey is.  Her mom said one thing to Jim.  She said "we just want our little girl back."  It's so hard to see how sick these medications make them, but we need to continually remind ourselves that being this sick will eventually make them well again.  Please pray for Leah and her family too as they are on their own difficult journey with leukemia.  

 When we got home Abbey started complaining of stomach pain.  She would fall asleep for a while and then wake up crying of stomach pain.  This went on for a few hours.  We were concerned so I called the doctor and he said it can be normal to have stomach pain after having that kind of chemo.  At around midnight she woke up and started throwing up.  We both got really nervous so Jim called the doctor again. He told us to take her to the ER so my mom came over to be with the boys and we headed to the hospital.  By the time we got there, she was o.k. Very tired, but not throwing up anymore.  After monitoring her for a while, they sent us home.  We didn't get home until after 3a.m. so we were exhausted.  We're not really sure what caused her to get so sick.  It could have been the chemo, but she's had that chemo four times before and never had that reaction.  They thought she might of had some sort of infection, but she had no other signs of infection since then so we are just thankful that she's feeling better.

Saturday and Sunday were both good days with her.  She is feeling pretty good.  She was coloring today and more interested in toys and activities that we would bring her on the couch.  She will be on the steroids until Friday and then on Friday she will have another bone marrow biopsy, and two doses of chemo, one by IV and one injected into her spine.  It will be a hard day, but after Friday, she has a one week break from all medications.  We are really looking forward to that!  On Friday they want the leukemia cells in her marrow to be less than 0.1%.  She was close to that at the last one, so we feel pretty confident that she will be where they want her to be that day.  Please pray that it is below 0.1% so they can stay on the normal schedule of treatment and not have to increase her chemo and medication.  So far everything has gone as planned (except for our one trip to the ER) so we are thankful for no big bumps in the road thus far.

Tonight Jim was reading a book to Jacob in his bedroom.  Abbey was laying on the couch just about to fall asleep and I was sitting next to her watching the baseball game (we could hear Jim reading). All of a sudden she got off the couch by herself and starting trying to walk into Jacob's room.  I helped her in there and we sat and listened to the story.  It is so hard to see her like this, but so encouraging when we see those little signs that it's still our Abbey in there.  Jim had a big smile on his face as he read the story and we all sat in Jacob's room together.  It was a few minutes of "normal" and it was good.  The nurse told us that once Abbey is off the steroids, we will see our Abbey come back.  We are very much looking forward to her feeling more herself.  

Thank you for all your encouraging words as we struggled to get through last week. Each one lifted us up and we so appreciate you all.  Some of  you are our closest friends and others we've never met, but you're all dear friends to us.  We were reminded by a book that we just started reading that our God is God of the mountaintops and Lord of the valleys.  Thanks for going through this valley with us and helping us keep our eyes up.  

The last couple days have been hard for us.  Although Abbey's numbers are good, she is getting sicker from all the medication that she is on.  The last two days it is rare for her to be off the couch or to see a smile on her face.  The medication that she is taking most is the steroid and there are many side effects.  They told us that children on this steroid have personality changes and it has been very hard for us to see our sweet, happy Abbey not be herself at all.  She is very swollen and having pain in her fingers and pressure in her eyes.  We are struggling as we watch her suffer.  Please pray as we get through one more week of the steroids.  She will be stopping that medication at the end of the month for the time being (she will be on and off it for the whole treatment), but will be starting another medication for the month of November and we are praying that it will be a little easier for her body to handle.  Her hair is also really starting to come out today.  We aren't sure exactly what our next step should be with this and are kind of just waiting until we have to take it off.  It's hard.  

We find ourselves talking about the past and longing for things to just be normal again.  We always have enjoyed going to fall festivals this time of year and bundling up on cold days to go out and play in the leaves.  Abbey had just started a tap class on Friday mornings a few weeks before she was diagnosed and it's hard on Fridays to be sitting in a clinic where she's hooked up to an I.V. instead of watching her jump around with her tap shoes on and be a three year old. We miss watching her and Jacob ride around in his jeep with big smiles on their faces.  We miss normal and it hurts. 

This is hard to write as I'm sure it's hard to read, but we need to be honest as we go through this journey and we're asking you to continue to pray for us and especially Abbey.  Our hearts are so heavy right now.    

Tomorrow is her treatment day so we will be at the Ireland Cancer Center at 10a.m. She will have her port accessed for them to draw blood to see if she needs platelets or blood and then she will get a dose of chemo.  The thought of more medication in her little body is hard to imagine right now.  Please pray for a peace for her and us as we go through our day tomorrow and strength for the remainder of this month.      

Abbey's Treatment

After our encouraging news yesterday from the doctor, we have had many questions from people concerning Abbey's treatment and why she would need to be on chemo for 2 1/2 years if the leukemia cells in her bone marrow are already down to 0.2%.  That is an excellent question and we had the same question.  We spent some time talking with the doctor about just that the other day.  The doctor explained to us that there are still cancer cells in her blood and body (and still in her marrow at this point even though it's way down) and from past experience and research they have found that this length of treatment is necessary to make sure each and every cancer cell is gone and that not one is left to quickly multiple and invade her body again.  He explained how cells are 'hiding' all over our bodies so although we are thrilled that the cancer cells in her marrow are down to 0.2%, we still have a long journey with chemo and treatments to make sure that down the road this is gone and never comes back.  She will continue to have intensive treatment for 6 months (although the medications will change and some new ones will be introduced and others will be stopped for the time being and then re-started at a later date) and then the next two years will be less intensive, but she will still continue to be on medications and have chemo at certain times.  Another interesting thing that they mentioned to us is that if Abbey was a boy the treatment would be 3 1/2 years because of the extra boy part.  That really put it into perspective for us.  They treat with chemo and medications for a whole extra year just for that small part on a boy to be sure there is not one cancer cell left.  So, we are thrilled that her bone marrow is looking so much better, but we know we still have a long road ahead of us before we can say she is cancer free.  We know we'll get there though and we see God working in miraculous ways.

Jim and I have had some conversations (one yesterday) about what it will be like once she completely beats this and it is over.  We have wondered if for the rest of our lives, we will always be thinking that this might come back and if at each blood test that they do on her, if we will be holding our breath in fear that it is going to come back in her body.  Last night, Jim got the mail and there was a photocopied paper from a dear friend of mine down the street with a page copied out of her devotional Bible for us.  It was a story about a girl who is now a teenager, but when she was three years old just like Abbey (she had a brother who was 5 and an infant sibling... just like Abbey) she had leukemia.  She fought leukemia for a few years, but she is now completely free of cancer and it said this exactly "she is at no higher risk than those who've never had it."  Those words were a gift from God last night to us.  How awesome that my dear friend just happened to be reading exactly that on the day that we needed to hear those words so badly.  God is speaking to us through His people and giving us hope as we are on this hard journey.  The end of the story talked about how this little girls whole community rallied to pray.  They had family and friends standing by them in every way they could.  God healed her and in the process many lives were changed.  We see that happening with our Abbey and are excited to see how God used this story in many lives when this is said and done.  Those are God moments for us.  We have had many and it is so awesome for us to remember how much God is with us each step of the way.  When we get scared or overwhelmed, we talk with each other about how He is giving us these things to remind us that He is in control of all things and cares for us so intimately...  We are so thankful for these reminders and we know they are from Him to give us the strength to persevere.  

 We heard amazing things about the Church service at our church on Sunday.  It was a time of celebration for changed lives and a time to learn about God's healing power.  It also was a time as a church body to be unified through caring for some of their own (us).  They watched the video from the head shaving night and committed to pray for Abbey by going to the front and getting a bracelet that says 'Praying For Abbey'.  After church my sister dropped some of the bracelets off at our house and we got some pictures of the boys with them.  We also shaved Jacob and Micah's heads the other night.  Jacob told us that he wanted to do his head to make Abbey feel better when she looses her hair.  We are expecting her hair to start falling out this week.  We have noticed a couple very small bunches coming out and both times that happened, our hearts stopped.  Please pray that God will help us through this next difficult time and that He will give Abbey and us a peace about it.  Also, please pray that God would continue to protect her from any infections in her body.  She was having some bleeding after going potty last night and the doctors are going to be watching it closely.  Please pray for healing for her bottom and no infections or complications as a result of it. 

Here's a couple pictures of her biggest fans... her brothers, Jacob and Micah.  Jacob is wearing his orange bracelet that says 'Praying for Abbey' and Micah is trying to eat his :)  They love her dearly and have been amazing as our world has been turned upside down.  Please continue to pray for them too.  We love you guys... thanks.

  

God Is So Good!

After a long weekend of waiting we just got the results from our doctor.

They wanted the leukemia cells to be less than 5%......  The cancer cells in her marrow are at 0.2%..... that's less than 1%!  He said that is fantastic and we couldn't have asked for anything better at this point.

Clap your hands, all you nations;

shout to God with cries of joy.

How awesome is the Lord Most High, 

the great King over all the earth!

Psalm 47:1&2 

Praise God, we are so thankful!!

The pictures are some of the posters that we've received with Bible verses and words of encouragement.  Thank you!