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.