Monday, March 21, 2011


We spent a total of one week in the hospital. It was really hard on both of us. The doctors could not seem to get her blood sugar where they wanted it. I felt so helpless because I really could do so little. I just tried to hold & comfort her. She wanted me with her every second because she was so upset & scared. Consequently I lost a few pounds from eating only one meal a day. I wasn't able to read, use the laptop etc. or she would just cry & hold her arms out to me. It was very pathetic.

Chemotherapy, or as we call it "elixir from heaven", is hard on her body, but the problems she is having are side effects to steroids. The steroids help with the chemo but cause horrible side effects for some kids. Abigail is one of them. She now has high blood pressure, diabetes, and is constantly starving. The starving part is tricky because we have to be careful what & how much she eats for the blood sugar and balance that with the insulin. Add the fact that her tastes have changed dramatically because of the chemo, and that she developed thrush and severe mouth sores. She would scream for food and then scream when we put it in her mouth because she hurt so badly. It was awful. One morning I had had it. I was up much of the night with her and could no longer take seeing her in so much pain. I finally said a prayer and asked Heavenly Father to please let the pain stop. With the next bit of oatmeal the crying stopped. I don't know if the pain stopped but she was calm and ate everything in her bowl. I was so filled with gratitude for that little recognition of her needs and mine. She was still in pain when it came time for her next meal but I was OK because she had experienced some relief earlier. Our little "tender mercies" are so much more frequent now that we are making an effort to recognize them.

We did end up having family pictures at the hospital. They have a little outdoor area on one of the upper floors that we used. Unfortunately, Abigail's ANC was 0 which meant that she had no immune system at all. We finally took pictures of our family and just left a hole for her on Josh's lap. Then we brought her down and took pictures of just she & Josh to photo shop in. Her siblings stood behind the photographer waving and singing. She had missed them so much that she just perked right up and grinned. She was our easiest child to photograph.

Abigail still won't walk and usually wants someone to feed her and even hold her cup while she drinks. She prefers to be lying down. She is sore and achy. She watches Natasha play and I wonder what she is thinking. I wish I knew how much she really understood about what was happening. Does she remember running and playing and how much fun she had? Will she be able to just jump right in where she left off when she starts feeling better or will we have to teach her again? I wish I had a way of knowing what was coming. It would sure be easier to go through if I knew everything would be great at the end. I had my first bout of severe self doubt during this hospital stay. I wondered if I should have just let her go. I know it sounds awful but when you see your baby in pain and struggling it is hard not to question your own motives. Is this what she would really want if she could tell me? It feels like such a huge responsibility to make decisions for someone else. I decided that this one was easy if I just thought of one person--Natasha. She lights up around Abigail. She talks to her and brings her toys from time to time. They came as a pair and I could not imagine them not always being together. It's like yin without yang.


  1. Your post made me smile and cry. sending you the best prayers I can pray.

  2. We are praying for you all! Lots of love from the South!!

  3. they are so sweet together! It was so fun having Natasha here the other day! Please let me know how I can help again! I can't imagine how hard it is for you to watch that little sweetheart in pain. OUr prayers are with you all!

  4. I got a sneak peek at your family pics at Katherine's last week - Abigail's sweet little face is priceless. Katherine said she cried all the way home she was so touched the way Abigail reacted to seeing her siblings!
    Do you need some chemo mom's to ask questions too? I don't know what blogs you follow, but here are a few Ds mom's blogs who have been in your shoes and would love to answer your questions :)

  5. Sweet Kristen,from above,passed on your blog to me and I was more than happy to venture over and introduce myself and give to you,what ever you might be needing now.which I expect,at this point,is mainly prayers,so consider that one done.

    Miss Zoey was diagnosed with AML M7 at 19 months of age.Today,she is a vibrant,thriving 4 year old,who shows us daily what the face of courage looks like.Leukemia is only one of many of Zoey's obstacles placed before us but the common thread has been her resilient,forgiving spirit,which in turn,allows us to follow her lead and do none other than the same.Abigail will be the same for you.she will show you the way and will be your light,even in the darkest of moments.

    This road is not easy but it is made smoother with faith and support and the ability to ask and accept help,when,if you are like me,it has always been your nature to take on the world.I am a mom to 6 so I certainly know the pull between taking care of a fragile child and balancing other little human beings and a home and a husband and on and on.But I found that it was best to go one moment at a time.Lean on those closet to you and know that it truly takes a village to raise up a child.

    I would be happy to answer any questions you might have and I know all of the mom's listed above,as they have been a constant blessing and support to myself and my family as we walked this unimaginable road and they too would be invaluable source of encouragement.Truly amazing,amazing mom's and families.

    Take and when I say take care,I literally mean,take care of you.If you are run down and sick,you will not be able to care for Abigail especially,but your other beautiful children as well.that is also where taking people up on their offers of help really needs to happen.Also,the ones' who love you,want to help,they feel helpless and unsure of what to do for you so by allowing them to do for you makes them feel as if they aren't standing idly by.

    Will keep up with your journey.Will pray for your sweet girl and please don't hesitate to call on me,anytime.Also,we started a blanket project after zoey was released from treatment.We make them for her warrior friends on the oncology floor at her Children's hospital and have sent them across the country to others battling this beast.We would love to send one to Abigail and if you are comfortable with that you can email me,with your address and I will get one right out to you.

    Peace and strength to you as you journey forward.

  6. She is so beautiful. Stay strong...there are so many praying for your family.

    We're going through thrush with our newborn and myself and have found Gentian Violet to be effective. It is an over the counter, topical solution and it's PURPLE! I put it on a q-tip and then let the baby suck on it to get it all around her mouth. I even apply it to myself before nursing and it seems to bring relief to her and definately to me. Maybe it would help Abigail?

  7. Just want you guys to know how much we are praying for Abigail and ALL of you...this is definitely a tough trial and you can hoe the road alone....we are praying everyday for you guys and asking God to provide grace and mercy for you and all of the family....if there is ANYTHING we can do to help please let us know, it would be our honor and blessing - we love you guys! galit & matt

  8. Does she like baby food at all? When Anthony had mucositis, he could only handle meat baby food. You know, those little jars of meat with gravy? It isn't good as the only source of nutrition for too long, but that was the only food that didn't hurt his mouth during those times.