Rest

Thursday24th of March the was the last day of steroids and Friday the 25th our little Jekyl & Hyde went in for another bone marrow biopsy and spinal chemo. Here she is wanting to go home before it even started. We should have the results tomorrow. The hope is that there is no trace of cancer. We know of course that it would still be there but we don't want to see it. Her hair was looking so scrappy that we finally cut it short. I didn't want to shave it because I was afraid it would make her too cold. She is still shedding but it isn't in her mouth, itching her neck etc.

Saturday and Sunday were pretty hard because Abigial doesn't do well after the lumbar punctures anyway, but the biopsies seem to really bother her. In fact neither she or either of her parents got any sleep at all on Saturday night. It was really miserable. Luckily, her initial treatment phase called "induction" is over now. We are being given a week off. Fortunately, they are changing our chemo day, so we get 10 days off. As luck would have it, those days coincide with my kids' spring break.

The icing on the cake is that her "blood numbers" as we have come to call them, look fantastic! All but one of the values looks normal. Meaning that they are just like our other kids right now. We can go out in public and take her places again.

*I wrote this over a week ago and forgot to post it. My goal today is updating so I hope to add more posts. Unfortunately, that was yesterday's goal and we ended up with 7 hours of screaming and pain and a brief ER visit. Hopefully today will go better.

Hair

While Abigail was in the hospital we decided to cut her hair. It was knotting up terribly in the back and looking more like dread locks than pretty hair. Neither of us liked combing through it. So, my sweet sister Cassie brought her hair cutting scissors up to the hospital and went to work. She even gave her a bath first. She was really happy to see her aunt.I can't believe how long it was! She has never had a real haircut since birth and it was getting really long. I had recently been able to do french braids with it. They were so cute! But, so was her cut. She looks like such a 'little chub' (an affectionate term in our family) with her bloated stomach & chipmunk cheeks from the steroids. Short hair just looks so cute on her. In many ways the haircut has been a blessing. Her hair is not as matted in the back and it seems to stay out of her eyes better. It is also much easier to wash. Last Thursday when I was giving her a bath I took out her elastic and then started to undo her braid. Hair came off into my hands. It was just a little, but I knew it was starting. We were told it would most likely come out in clumps but that is not how it is happening. It's just coming out one piece at a time all over her pillow, her shirt, the couch and us. I gave her a bath Tuesday and my mom found me sobbing over the tub. I would massage the shampoo into her head and then watch in horror as hair stuck to my hands when I pulled them away. I pulled a ball of hair out of the drain and then a small one from the pic that I used on her after the bath. Since then it has only gotten worse.

I don't know what it is about losing hair that makes it feel so final. She still has a "normal" look to her now. Sure, she just sits or lays, has a pale face with huge cheeks & stomach from the steroids, but normal-ish. But as the hair falls I keep thinking about how real it feels now that she is fighting cancer. The thought of seeing her bald just seems to take the "little girl" away somehow. There are no pigtails and ribbons, no bangs needing cut, no hair to fill with mud & spaghetti. Don't get me wrong, her Aunt Sally is on a campaign to make sure she has the cutest hats around in every color (thanks Emily too!) and some loving friends & family are knitting her hats as well. Its just hard for me. I love to do my girls' hair. It's like a source of pride that I take the time to make them look good--especially Abigail & Natasha. I think it is my way of telling the world that they are really loved and cared for. Isn't that so dumb? When I really think about it, it sounds shallow. But, it's how I feel.

Yet, right now when we are dealing with so much it is also somewhat of a relief that soon "there are no pigtails and ribbons, no bangs needing cut, no hair to fill with mud & spaghetti." Her head will be cold but she has been pulling out all barrettes & bows we have put in to keep hair out of her eyes. Of course, today they have come out with a chunk of hair attached.

I wonder how she will respond to seeing herself bald. I am really curious to see her reaction. She has been such a trooper. Smiling when she can even though we know how sick she must feel. Each of the side effects she is battling right now are "rare but not unheard of" according to the oncology nurse. But having them all is very rare. Like I have said many times before, we do rare in our family.

Here is our sweet little angel as she is sleeping next to me tonight:

I have this same Buddy Walk T-shirt and she was so funny when I wore it too. She kept smiling and pointing to me & then her. It is amazing how much I love her. There are just those moments that hit sometimes when words cannot explain how much you love someone. Tonight I am having one of those. I would never say that I was happy she has cancer but I can truly say that I have loved many of the learning moments it has brought. I have had a lot of mind numbing, girl holding, cartoon watching moments. I have also had some soul searching realizations and life lessons that I will never forget. It's amazing how you can find some of your biggest blessings amongst your greatest trials.

Time

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.

Inpatient Again

The volunteer that showed up to help feed her while I left for a few minutes was a good looking young guy. My little flirt ate almost everything for him.

Sometimes it is a blessing to have nurses to help clean her up!

I wanted to write every night and I already messed up! In all fairness, Tuesday & Wednesday were really busy. Abigail had been awful on Mon night/Tues. morning. She was up most of the night hitting me every 20-30 min. for a drink of water and filling 4 diapers in 1 night. I finally called the clinic when I saw the condition of her diaper area--it looked awful. When I called the clinic they wanted her to go to the children's hospital right away. I should have packed a bag but I was still thinking that Abigail was my normal little girl. OOPS!

I knew within a few minutes that she was being admitted. Her yeast infection had gone wild due to the massive antibiotics she had taken and she had severe thrush in her mouth. The worst was the side effect of the steroids given with the chemo. They have turned her into a diabetic. Normal glucose levels should be somewhere in the 90-125 range. Her glucose was 639 when she was admitted. Every day for the rest of the month, she will get a minimum of 5 finger pricks and 5 glucose shots. It's killing me to see her fingers & toes so black & blue. Because her body doesn't have the ability to clot really well a tiny prick turns into a big ol' bruise. Her little legs look like she's a heroine addict and it hurts me just to look.

The great thing is that it doesn't seem to bother her that much. She hates the pricks and cries when she sees it coming but she forgets quickly and is easily distracted. So really, the only one struggling is ME:) I will have to give the shots at home and I am not looking forward to it. Fortunately, the nurses will still be giving them for a while. Her blood sugar is terribly erratic and they are having a hard time controlling it. That, plus her incredibly low blood scores making her open to any illness, are keeping her in here. We have even arranged to have family photos in a hospital conference room. Any port in a storm, right?

Today I took the boys to the hospital kid's area and ran into a good friend from Michigan. It was so great to see her again. It has been almost 2 years. It really brightened my day. She is always such a happy person. It helped me to rise out of the slump I was in. I feel like I am abusing my little girl lately. There is no way to explain my "the end justifies the means" view to her. She doesn't understand why people are messing with her and hurting her--and her mom holds her down for it. I wish there was a way to help her to understand what her parents are fighting for. We want more years of antics & teasing from her. She has been such a fun part of our family. Tonight while we were watching "Finding Nemo" together she stole the remote from me and hid it behind her back. I loved that she was feeling like the fiesty little stinker we have been missing for the last 2 weeks.

Preparation

Part of my desire to document all that goes on with Abigail's leukemia is to be able to keep track of all the positive things that will come from this new adventure. It's funny how you can hear statistics and see things happening around you without ever believing that it could happen to you. Having a child with a disability certainly never entered my mind. I guess I thought that since I wasn't considering it as an option that it just wouldn't happen. I felt that way about Leukemia. I read the statistics after their births--20 times more likely to have Leukemia. That certainly didn't mean they would right?

Over the last few months I kept having some strange thoughts enter my mind (I only wish this was unusual). When I had some quiet moments thoughts would come to me on how I would handle a child who was very ill or hospitalized. Everyone does things differently when they ponder on their ideas. I plan. I don't know if I am just a control freak or what but I actually planned what I would do in this situation. Who I would need to call, how I would talk with the kids, what I would change to accommodate the situation etc. (I know I'm a geek because I have also mentally planned several talks, funerals, and lectures). Looking back I feel like God sent me these thoughts to help me know what needed to be done when the diagnosis came. Managing a family of 9 requires some preparation. I am so grateful that I already knew what I needed to do at home so that I could make a few calls and then focus on Abigail's needs.

I was also blessed to have remembered a story an acquaintance told me about 8 years ago. She knew a boy who complained that his legs hurt and he turned out to have Leukemia. Of all the random things I have heard, this one seemed to stick and came into my mind on Wed. the 23rd. My sister watched my 4 youngest while I helped out at a school activity for my 9 yr old. When I returned I hung out with her for a while and had lunch there. Abigail was acting tired and wouldn't stand up. I had just taken her to the pediatrician the day before for her lethargy and he said she just had a virus. That had been the 3rd time that month she had been in to him. I had taken her for an ear infection and a rash which he called dry skin. (turns out it is called petechiae and my doctor should have caught it). Anyway, Cassie said that I mentioned I was concerned about Leukemia. I didn't remember this. I did remember mentioning it to my mom when Abigail woke up screaming inconsolably after her nap. I called and took her in AGAIN to my pediatrician and mentioned to him that I was concerned about Leukemia and relayed that same story. Finally he send me to the local hospital for x-rays and blood work.

As I look back, it's funny how things work. I remember sitting in the hospital praying that the phlebotamists would be able to hit her veins on the first try. She is a tough stick for a lot of reasons and as they were digging for a vein I was begging God to let them hit it. I had some things I really wanted to do that night and driving 25 min. to the local Children's hospital wasn't one of them. I am embarrassed to admit that I was angry when my prayer wasn't answered. Why couldn't he just extend a little mercy to a situation that was not a big deal? When I got home to make arrangements to go up, Abigail's fever broke 101. The doctor had told me to call if that happened. He sent me to the ER at the children's hospital anyway.

Leukemia would have been discovered with the blood tests at either hospital. The difference is that one would have been over the phone the next morning to just me, and instead my husband and I were able to hear it together and Abigail was admitted right away. That led to her being available for the cancellation that afternoon that expedited her much needed treatment. I need to remember that God's view is greater than mine. If I am going to believe in Him I have to believe that He knows what He is doing. Except for my breakdown at her first visit to the chemo clinic (sleep deprivation probably) I have just felt an overwhelming sense of peace. I wish I knew the outcome or the challenges we will face with this trial, but I know that we can learn so much from it if we choose to.

We have already begun to see why we are here in Utah at my parents' home. Having extra adult hands have been essential. This neighborhood has been amazing to our family and they act as if they were just waiting for a big service project. I have never eaten better or had a cleaner home to live in (let's face it--housekeeping has never been my thing). Josh's new job is filled with some incredibly compassionate individuals. We were visited in the hospital, given a generous collection, and Josh was hired on full time. (He was previously a contract employee for his first 90 days.) If they hadn't offered to hire him on we would have gone April, May & June with no medical insurance. The tender mercies of the Lord have been astonishing and we have seen His had in so many places we had never recognized.

Hospital Stay

Abigail was in the hospital until late Monday night. I was impressed at how well things went. There was a cancellation and surgery was earlier than expected. She had to have her bone marrow biopsy in both hips because her bone marrow was so crowded they struggled to get what they needed in just one side. It turned out (if I understand this correctly) that about 70% of her bone marrow cells were cancer. It is a really high percentage. Her bones hurt because of all the crowding. She looked so awful for that first 24 hours that it was hard to believe she was the same girl that was playing just a few days before. I tried to find photos to show the progression over the 5 days. It took 2 platelet & 2 blood transfusions to get some color back into her face--even then it is still pale. She got her first dose of chemo during the surgery. They did a spinal tap to see if the cancer was in the fluid and then added some chemo back in for good measure.With the chemo comes steroids which cause her to swell & retain water. She came home from the hospital about 4 pounds heavier than when she went in.

We were so impressed with the care that she was given. It is hard to force needles & meds into a child who is so young and does not understand. They were able to do it in the kindest way possible. It has been so hard as a parent to watch and hope she doesn't hate us for putting her through this so we have more time with her. Josh and I don't think she would have lasted more than a couple of weeks because she was fighting a horrible virus and her body didn't have much immunity left to fight with. It is amazing how advanced our modern medicine is. I love that we have as much hope as we do.

I find that I want to be with all our kids even more now. It is so easy to take what I have for granted. We cherish every smile from Abigail and every time she perks up a bit. We try to hold her as much as she wants even though it is impossible. She is probably being held and cuddled about 20 hours a day already. Since her twin and baby brother are sick she even sleeps between us at night. According to the cancer clinic, she will probably be this clinic for at least this month and then some. The hardest part of the process is the beginning month, so we are just trying to hang in there until the next round.

Leukemia

Our 2 1/2 year old daughter Abigail was diagnosed at 2 a.m. Thursay morning, Feb. 24 with Leukemia. We had taken her in to the doctor and then the hospital because her leg hurt and she wouldn't walk. We went from probable toddler fracture to Leukemia in 2 hours. 13 hours later she was in surgery getting a permanant port, spinal puncture with chemo, and a bone marrow biopsy. Tomorrow or Sat. she starts 2+ years of cancer treatments. The success rate is roughly 80%.

One of the most unique things about Abigail is that she is an identical twin. Both twins have Down Syndrome. Because of this her twin Natasha has a 50-75% chance of getting it. If not now, eventually.

I wanted to start a blog that followed her cancer treatments and pointed out all of the positive things that can and will come from this experience. It has only been about 5 days since the diagnosis now and I can already see so many amazing things we have learned and little small miracles that have taken place. This blog is here to help me recognize and remember these experiences. Also, sometimes I need a little encouragement to look for the silver lining.