Hard

One of the hardest things for me, as a mother, is to see the tears on my little girls face and hear her plead that I be the one to take her to the doctor, then step back from the car knowing that right now I need to trust her in someone else's care and take care of myself. I need to catch up on sleep that I missed last night while caring for her. I need to get ready for my classes tonight. If it was more serious, I would be right by her side. I know she's is good hands with her Daddy, doctors, and nurses. But even after more than two years, it hasn't become any easier.

My Three Accomplishments

During this weeks class gathering on thursday evening, we were asked to write down three accomplishments that we are most proud of. When asked this I first really struggled trying to come up with something. After some thoughts jumbling around in my head it hit me really hard what they were. In my whole life I have never had such great challenges as I faced since Elizabeth was diagnosed with Leukemia, and so my greatest accomplishments happened during this time.

The first accomplishment that I am most proud of is getting shots without nearly passing out. To understand why this would be a great accomplishment for me, you have to understand how hard I used to struggle with needles. Just a couple weeks before Elizabeth was diagnosed with Leukemia, I had to get a shot. After I got my shot and was checking out, I dropped to the floor nearly just shy of blacking out. I kept trying to be brave as an adult to get shots by myself, but found that if I did I would not be able to drive home anytime soon after.When I got shots I would get extremely dizzy, pale, and clammy. Even discussions about shots would leave me feeling weak. A nurse came in to draw blood off Elizabeth's IV line the first night we were in the hospital with Elizabeth, I panicked and nearly hyperventilated while I was holding her. This is why I noticed a huge difference when I got my flu shot after Elizabeth was diagnosed.

The second accomplishment that I am most proud of is shaving off my hair. I wrote about it here http://angellezjani.blogspot.com/2013/07/operation-bald-us.html

The third accomplishment that I am most proud of is being able to stay in the room while Elizabeth gets her Lumbar Puncture (Spinal Tap). Watching others get poked is similar to my experiences with getting shots. I was able to work through holding Elizabeth when she had her port accessed and de-accessed, but it took longer for me to be able to handle her Lumbar Punctures. Lumbar Punctures (LP) are routine for Elizabeth's treatment, and in the beginning Brian was able to be there whenever she got one. But I had decided that I wanted to be strong enough to be able to stay with her because I knew Brian would not be able to go every time she had a LP, and I do not like leaving her alone (even if she is asleep through it). The last LP that Elizabeth had before we moved from Michigan last summer, I finally did it. I felt strong enough, and determined enough to do it. I stayed in the room with Elizabeth while she got her LP!

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This reflection of what I have accomplished since Elizabeth was diagnosed with Leukemia has come as we have reached two years since Elizabeth first went to the hospital with Leukemia (ER on October 18, 2012; diagnosed October 22, 2012). It's been on my mind a lot, and it has been a blessing to realize some of the good things that have come out of this for me. I have grown and done things I never thought I could do. It hasn't been easy, but I am grateful for what I have learned about myself and what I can accomplish. Through it all I know that my Heavenly Father, and my Savior has been right beside me. I know I couldn't have done it all without them. They helped me overcome my anxieties of needles enough to be able to be strong enough for Elizabeth's many 'pokies' during her treatment, gave me a purpose by giving me the idea to shave my hair, and much more. As Elizabeth says, "Jesus is in my heart!"

I thought I was beaten

After starting my classes this week, spending three days taking Elizabeth to unexpected medical appointments (three days of IV antibiotics), attending my first class gathering, Elizabeth disrupting my sleep nearly every night, & trying to keep up with my coursework (without Elizabeth at preschool like I planned for some of my coursework time), this week had me beat. Many tears were shed as I struggle with a homework question this evening. I turned to prayer and poured it all out to Heavenly Father asking for help, and after a bit I was calmed down and able to start typing an answer.

It's been a hard week, but I know Heavenly Father has given me many blessings during it all. These are some of the blessings I recognized this week. Elizabeth never ended up needing to go to the hospital. Brian bring home dinners a few nights. Brian giving Elizabeth a priesthood blessing when she got her fever Wednesday. Elizabeth so excited to go to the doctors this morning. Elizabeth being okay when she got her "pokie" out. Having fun playing checkers and My Little Pony on Elizabeth's Kindle with her. Having Elizabeth's Kindle to keep her entertained this week. Elizabeth getting to okay to go to her friends birthday party tomorrow. Lots of snuggles with Elizabeth. Brian bringing us pizza and breadsticks. An outpouring of love and support online from family and friends. Enjoying my time at my class gathering. Finding that having my phone camera set at a mirror for Elizabeth to see what is happening around her port helps calm her anxieties. And of course the help with my assignment this evening.

Rethinking our Family Home Evenings

Last month, as I was sitting in the Sunday School class trying to pay attention, I was feeling weighed down by some concerns I have about Elizabeth. I had struggled getting her to go to primary, and I didn't understand why. My thoughts turned to pondering the other concerns I have, including her focus on the negative things. As often happens as I ponder my worries, my thoughts turned to prayers asking for peace and guidance. As I was pondering I was thinking what things Elizabeth needed to do. In my mind I was starting to make a chore chart. But this felt wrong.

After more pondering and prayer I had the question come into my mind getting me to think about what kind of example Elizabeth is getting at home. This made me pause. As I thought about this I realized that Elizabeth hears the conversations when we talk about the stresses of the day. I also realize that she did not hear the gratitude that Brian and I express to each other at the end of the day, after Elizabeth is asleep. Or know what I write in my journal each night about my blessings I noticed from the day. I knew something needed to change.

For myself I have found that it takes me about a month of working on a new habit consistently for it to start to hold. I also need it to be something small so that this change isn't too overwhelming for our family. This brings to mind the scripture that says, "...by small and simple things are great things brought to pass..." (Alma 37:6). I want our family to keep changing, & working towards becoming better.

I then thought that what better time to introduce a new habit for our family, then during our Family Home Evening. The time we set aside each week to study & learn together. This is why I wanted to change the way we do our Family Home Evenings.

So here's an outline to how we are doing Family Home Evening now.

• Monthly theme for our weekly lessons in Family Home Evening: This last month we focused on gratitude & thanking Heavenly Father.
• Monthly scripture (short & simple for Elizabeth to memorize) to recite together each night as a family: Our scripture this month was D&C 58:7 "Thou shalt thank the Lord thy God in all things."
• New habit: After our family scripture reading, & reciting our monthly scripture at bedtime, we each answer the question, "How had Heavenly Father blessed you today?"

We have now reached the end of our first month, & will start a new theme during tomorrow nights Family Home Evening. I have to say that I have really loved this new way. We may tweak things as we go, but as for now this is the simple outline we plan to follow.

I have already felt a difference in our home as we have taken the time to reflect on our day, & share our blessings with each other. I also noticed that it was making a difference when Elizabeth, one afternoon a couple weeks ago, called out randomly from the other room that she was blessed to have a nice teacher. That's when I knew that things were changing for the better.

How are you?

This is a question that is asked over and over again. "How are you?" is often used in tandem with a greeting when we see someone we know. Sometimes it is said as a habit, and other times in the truest of sincerity.

A simple question, but I have come to believe that this is one of the hardest questions to answer.

Most often the reply to this question is a one word answer such as "Fine." So simple and we move on in conversing with each other, or by parting ways. But more and more often I am finding myself overwhelmed when I am asked this simple question of "How are you?"

How can I explain to someone in a few minutes, let alone one word, what is going on with me in my life and heart? I CAN'T!!!

I have so much going on in my life. Things that are agonizing, wonderful, normal, perplexing, and so on. Things that leave me feeling happy, frustrated, anxious, loved, angry, blessed, and much more.

So each time I am asked, "How are you?" I have all of these thoughts and feelings that I have experienced recently come to mind. At times it can be almost crushing in it's intensity. And because of the feeling of being overwhelmed by trying to explain how I am, I simply reply, "Fine."

To me it feels like this question is incomplete.  "How am I…what?"  I think it would be better if "How are you….?" was finished with something like  "…thinking you did on the test?"  "…going to get to school?"  "…feeling about the diagnosis?"  "…going to get the house cleaned while caring for your daughter at her doctors appointments all day?"

Completing the question lets us delve deeper into what is going on in a persons life, and how they are feeling about it. Completing the question means we need to listen and learn about this person we are talking to, so that we can continue to ask complete questions. Completing the question can strengthen relationships of friendship and love.

Completing the question is harder.  It is so much easier to leave the question unfinished. I do it all the time, and have been for many years. But I hope to change that. In time.

The Haircut

On the morning of March 14th Elizabeth gave me a surprise. I was tired after spending most of the night up with Elizabeth since she was having a hard time sleeping (steroid side effect). When Elizabeth got up I laid in bed longer trying to catch a bit more rest. Elizabeth then came into the room and excitedly asked me how I liked her bed head. Without my glasses on I simply glanced over and said it look great. Elizabeth then came over to my side of the bed and said she did it like mine. I sat up, put on my glasses and saw that she had a small patch of hair hanging unattached.

I felt so devastated!

I then did not react very well as I told her that she is not supposed to cut her hair, and that I would be taking the scissors away. And I did.

I then came back into the room to a sobbing Elizabeth that was telling me that I had broken her heart. Seeing this I went to Elizabeth and gathered her into my arms and apologized to her. I knew that more was going on and started talking to her about what she was feeling when I reacted the way I did. I then asked her about her reasons for cutting her hair.

Oh, my! During our talk I went from feeling so sad and angry to feeling my heart swell with such love and gratitude for Elizabeth.

The reason for Elizabeth cutting her hair was because she has been wanting to cut her hair like I did in the hospital back in July. Her hair had fallen out, but we had cut mine. She wants to do what I do and be like me.

As we talked I found that Elizabeth does not want to cut off all of her hair, and really at this time wants to grow it out with me. But we have made a plan. Elizabeth decided that she wants to grow her hair out until it reaches her wrists, and then cut it off to the length that it is at now. So that is our plan. For now.

I do have to say that it is really hard to see where she cut her hair. I actually have only been able to find the spot twice. Thankfully it wasn't much that she cut off (more like trimmed), and with the way her hair is right now it blends in beautifully.

6MP & Elizabeth

As we went through the craziness of the first phases of Elizabeth chemotherapy treatment, we kept hearing about the final phase (Maintenance) and had envisioned how it would go. Doctor visits once a month, pokies once a month, higher immune system, less concern about Elizabeth being around people, regular church including Elizabeth going to primary like other children her age, lots of play dates, and so on.

Well, we found that it was not to be just yet.

In the fall Elizabeth went to the hospital each month with fevers. Her ANC kept dropping lower than they want it to be during this phase of treatment, and they also saw that her antibodies were really low. So in October we stopped giving her chemo to let her ANC recover, and she got her first IVIG (antibody transfusion).

During this time we learned that when Elizabeth started treatment back in October 2012, the doctors had done some genetic testing and found she has one gene that likes to hold onto the 6MP (the chemo pill she takes every single day). Since she didn't have two it was possible that it wouldn't effect her, but we found that it does. All this does is hold the 6MP in her cells longer than usual. This is probably why her ANC kept going lower than wanted.

When she started chemo again she started at only getting half as much 6MP as she was  (her Methotrexate dose that she gets once a week was also halved). As we figured out how much 6MP Elizabeth's body could handle she needed to get labs checked every other week. They also keep a watch on her antibodies, and she has been needing an IVIG about every other month.

Since the changes Elizabeth has not needed to go to the hospital except for her regular LP's that just has us there for a few hours instead of a few days.

Elizabeth is currently getting 75% of the 6MP and 50% of the Methotrexate. She's been getting this dose for a few months now, and when I asked her doctor last week if she still needed labs checked every other week she said she was okay going to once a month (really it's every four weeks). Yay!

Fire!

Brian saved a man whose truck was on fire. What did you do today?

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While driving home from the mall this afternoon I was talking to Brian about how sad I feel for the many people out there that need help (this was brought on by being asked for money a couple times at the mall). I was also feeling disappointed that we had not done some kind of service for Christmas like I had hoped to do.

A short time later, as we continued to drive down the freeway, we noticed traffic was being funny off to the right. As I looked to see what was going on I saw someone trying to get on the right shoulder since their truck was on fire. And by saying it was on fire, I mean I could see a lot of flames all along the bottom of the truck.  Brian quickly got us from the far left to the right shoulder, got out of our car and motioned for the truck to pull behind us (I then pulled forward to get Elizabeth and me some distance).  Brian then sprayed the engine down with the fire extinguisher we had in the back of our car. This fire extinguisher he had just purchased for our vehicle on Friday. THREE DAYS AGO!!!

As I watched Brian help put out the fire today, I got very emotional as I remembered those who helped me and my family years ago.  I still vividly remember the time when I was in a vehicle that caught on fire. We were just minutes away from my grandma's house when stopped at a light we saw smoke coming from under the hood of the car. My dad got out and lifted the hood to find flames I remember trying to help my dad find something to put it out with, and also getting my baby sister out of her carseat as quickly as I could then going over to a grassy area beside the road with my baby sister and younger brother as my parents dealt with the fire.  A man from the hotel across the street had brought out a fire extinguisher, and a fire truck also came after a bit.  I will never forget that while I watched and waited with my siblings there was a woman that pulled over and stood next to us. She was so nice and calming, and while we stood there she told me that her husband was a fire fighter.

So I was reminded that you don't always need to have a service all planned and scheduled, but have a serving heart when you see someone in need. I am so grateful for those people that came and helped me and my family years ago, and also grateful to have a husband that is prepared and so willing to help others in need.

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Elizabeth is still disappointed she didn't get to see the fire.

Bald no more

Today a stranger told me they liked my hair, so I guess it's time to share what me hair looks like these days.

I can now make it look like I try to make my hair stick up.

The beginning of August I stopped shaving my head, and let my hair grow back along with Elizabeth's.  Elizabeth's always looked great being baby soft and laying down so nicely.  My hair was a completely different story as it's been growing out.

I loved being bald! No maintenance at all. No washing it, drying it, styling it, or whatever.  As it started to grow it just looked like a boys buzz (which was still low maintenance so I was okay with it).  Then as it got a bit longer I started getting crazy bed head (anyone who know the Stringham family bed head knows what I am talking about). I would often go places with this bed head without realizing it.  I was so used to not having to think about my hair.  I kept thinking, any day it will start laying down, but my hair stubbornly stood straight up.  Finally, it's long enough that with a little styling wax I can play with my hair that sticks straight up.  I now love that it sticks up!

Now about the other reasons why I loved being bald. I loved the 'solidarity' that Elizabeth and I shared. I loved having Elizabeth say that we are twins. I loved that when people saw us they understood that our lives are sometimes hard, but we are in it together.  It was my way to tell the world that along side my daughter, I was fighting too!

Here's a picture to see how well Elizabeth's hair is growing.

See. Sweet, soft and silky.

Mother of the Flower Girl

I am sitting in my seat next to the grooms parents at the front, straining to see if I could catch a glimpse of Elizabeth through the other seated wedding guests. There is too much in the way so I change positions in my seat and look again. Nope. Then I hear a guest behind me laughingly ask, "I wonder who is more nervous?  The bride, or the mother of the flower girl?"  I knew the answer to that one, "The mother of the flower girl."

In the middle of August I was getting ready to leave the bridal shower and the bride takes me aside to ask me if Elizabeth would be a flower girl for her wedding.  The bride is Miriam, who is the fiancé of Dan, who is the cousin of Brian (who is Elizabeth's Daddy, of course).  Elizabeth has never met Miriam and only met Dan once as a baby. But this Dan is the one who upon hearing of Elizabeth's diagnosis last fall, sent Elizabeth a Kindle Fire to help during all the doctor, hospital, and what-not that was to come in the time ahead as she fought the leukemia.

I got so excited by the question of Elizabeth being apart of the wedding party, but didn't want to say yes without talking to Brian and asking Elizabeth.  Since it was going to be Elizabeth's birthday the next day, I thought that would be a perfect day to ask her.  So I checked with Brian the night before, and waited anxiously to ask Elizabeth during her Birthday breakfast the next morning.

Morning came with it's lovely pink birthday celebrations for Elizabeth. I worked to get her birthday breakfast all pink and perfect, and then we settled down to eat.  As we ate I asked Elizabeth if she would like to be a flower girl in the wedding for Miriam and Dan (mentioning to her that Dan was the one that gave her the Kindle Fire).  I then also described what a flower girl did.  She surprised me with her answer.

After my description of what she would do as a flower girl, she quickly responded that I could be the flower girl, and she would be the photographer to take pictures.  After a bit more talking with her she decided to be the flower girl, and I could take pictures of her in her flower girl dress.  That sounded perfect to me.

During the next month talk of the wedding and flower girl stuff was plentiful.  Elizabeth loved going dress shopping, quickly choosing her accessories, and then finding a dress to go with them.  She was especially excited about her 'high heels.'  She was constantly asking, "Is today the wedding?"  "Is [Grandma, Bapa, etc.] going to the wedding?"  She loved talking about her 'cinderella dress,' 'high heels,' head wreath, and purse.  She was looking for rose petals and cutting up paper to throw on the ground as she walked to practice for the wedding.  And then the day before the wedding she woke up with this question, "Is today the wedding?" And was so disappointed that it wasn't, but it was the day of the rehearsal.

At the rehearsal that afternoon Elizabeth was shy, and I was getting nervous.  She did not want to rehearse, and instead clung to Daddy's neck for comfort.  I really wanted this to work for her since she spent all month talking about it in great anticipation, but there wasn't nearly as many people at the rehearsal as there would be at the wedding.  Luckily, she did have the opportunity later that night to warm up to the wedding party.

After the rehearsal, the wedding party headed to a restaurant.  While here Elizabeth was able to fill her belly, and then make friends.  The best thing that loosened her up was when she joined into the little game that was going around the tables.  Throughout the night the wedding party were throwing sugar packets at each other.  Elizabeth caught on quickly, and had a great time making friends with those she threw sugar packets at.  I think we are doomed for now on if we take her to a restaurant that has any sugar packets on the tables.  If you get pelted by a stray sugar packet at a restaurant someday, you may find us at a table nearby.

The next thing I know, it is the day of the wedding.  We had a relaxing morning, I made sure Elizabeth takes a nap, and then it's time to get her dressed.  She is so excited that as soon as she can she rushes down to find Daddy to show off her dress.  Then it is time to get in place.

I quickly run upstairs to grab one last accessory for Elizabeth.  This was a special pearl necklace that Brian gave to me on our wedding day.  As I put it around Elizabeth's neck I tell her how special it is, and then add that it would help her to be brave while she was the flower girl.  I then had to leave her with Brian and rush off to find my seat.

When it was Elizabeth's turn to come down the aisle she did beautifully.  I felt a little teary as I watched her walk purposefully down the aisle and followed my instructions.  She took her duty as the flower girl seriously as she gently grabbed petals and watched them fall to the ground.  Towards the end she turned back to find out were the bride was.  She knew that she was throwing the petals for the bride to walk on.

It was so sweet to see my little girl once again tackle something new and intimidating. I had nothing to be nervous about.  Not only did Elizabeth do her duties as a flower girl, she did it better and more beautifully than I could have every imagined.  She once again showed me her bravery, persistence, and love of the experiences life has to offer.