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Plan C - A Happy Ending

2/19/2014

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Saturday morning before our night nurse left, she stopped in our room to share some news. Faith's ANC had skyrocketed to over 1300! Hallelujah! She hadn't registered a fever since Friday morning, so there didn't seem to be a reason to stay. Her platelets were fairly low, so they transfused her, but we were still discharged Saturday afternoon by 2pm. Faith was cleared to go to the concert and she was thrilled! I was cleared to enjoy my 40th birthday with my friends and my husband.

The light at the end of the tunnel is getting closer and brighter. Faith has 4 out-patient chemo treatments remaining. We hope that she will be done by the end of April. Her surgeon will clear her to bear weight shortly after chemo is completed and the bone has begun to grow again. For now, Faith has been cleared to sleep on her side, sit on the floor to pet Saki, and take a bath. What seems like little things are all big deals to her.

Thank you for all of your prayers and positive thoughts. They mean so much to our family and they really make a difference! Life is good!

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Not what I expected

2/15/2014

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I certainly didn't expect to be here again so soon. Niavete or wishful thinking, who knows, but one thing's for sure, I came with a bad attitude. A mixture of sadness, anger, guilt, and fear had me fighting back tears from the moment I read the thermometer last night.

Believe it or not, we don't always have major events planned, but this weekend we did. Faith was looking forward to a sleepover birthday party at one of her bff's tonight, Valentine's Night. Chandler, Kady and I were invited to a gourmet dinner party at our dear friends house for a group family Valentine's feast. Tomorrow, well, tomorrow is my 40th birthday. Hmmm. Chandler (honestly, Chandler and I) had planned a party to welcome my official old age status with friends and with style. The girls had a special evening planned for tomorrow. See, Wednesday morning, I got a call from Bridget at Hopekids. She was complimentary of my latest blog about Kady and wanted to share tickets to Saturday nights Demi Lovato concert...in a suite...with parking passes. Too good to pass up. Kady has a friend who is being teased at school for a rash she recently developed and could maybe use a special night out, so I reached out to her mom to help. She was planning to take my two girls and her daughter to enjoy the concert while we stayed home and hosted a small dinner party. Well, truthfully, Faith's counts were so low, that I'm not sure that she could have done any of it, but who knows.

So, last night at midnight when we brought Faith downstairs in preparation for our emergency trip to PCH and I looked over at the kitchen table to see the Valentine's baskets Chandler and I thoughtfully put out before we went to bed, I struggled to hold it together. I thought back to the busy day we'd had. I had gotten careless with lockdown protocol and taken Faith to Target, a doctors appointment, and lunch on day 11. I knew better than that! Faith, who rarely cries, was sobbing at the realization that her fun weekend was no more. Her tears were my responsibility and I was mad at myself and guilty for being so wreckless with her health. A fever is a big deal in a neutropenic kid. I remember when this first started the doc explaining to me that it's not usually cancer that kills, but the infection that results from a compromised immune system. Shit! I needed to hold it together for Faith.

By the time we got from the ER to the room it was 4am and we were exhausted. By the time we got settled, met with several 7th floor docs, switched nurses, and got to a point where the door wouldn't open every 5 minutes it was almost 9am so we went into cave mode and slept. When we woke up several hours later , it was like Christmas in pink! Quietly, while we slept, Valentine's balloons, cards, candy, etc had found their way to Faith. The pink shower contined all day with a party in the family room by Children's Cancer Network and people dropping off gifts, nice gifts, like a beautiful Silpada necklace, tee shirt and blingy cup from Hopekids. Kelly even snuck in a little Valentine's Vino for happy hour. It was hard to maintain a poor outlook when there was so much good around us. That's just not us, either. We aren't mopers, we're the Moore's!

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Plan B. Chandler and Kady went on the Valentine's date and Faith and I hung out at the hospital and to watch a chick flick. Not bad. We cancelled the party. I'll go to the concert with Kady, Tatum and Linda and Chandler will stay here Saturday night. We will pray Faith comes home Sunday. So far, she has been fever free since early Friday morning.

So, this is not the way I expected to celebrate my 40th birthday. Ironically, Faith was sick on my 30th birthday and Chandler was out of town. Not really what I expected back then. Turning 40 is not what I expected either. In my mid-thirties I had planned a big party for this day. I had a facility in mind that I wanted to rent out to throw a bash big enough to celebrate what I though back then was a big deal. Turns out, as I got closer to 40, it became less and less significant. I'm sure Faith's illness has impacted my outlook, but I think it's more than that. I've changed. I really do feel more at peace within myself.

My 20's were fun! I was 24 when we got married and Chandler and I agreed to wait 3 years on starting a family. Good decision! We had a boat and used it. We took trips, some impromptu ones. We lived and loved our life, as people in their 20's should. In our 20's we really didn't worry about much of anything. My 30's were a decade of lessons, some harder than others. Having kids brings about a whole slew of lessons. Babies, and the resulting toddlers and children, are cute and fun and true blessings, for sure, BUT, they are also stressful. You don't know what you're doing half the time, always a little afraid you're screwing it up. I have spent a lot of time and energy in my 30's stressing about my weight and my appearance. I learned a lot about friendship in my 30's. I drifted away from my college friends, a decision I will always regret, but I'm working on rebuilding that now. I also had a painful lesson that resulted in the loss of a close friendship that took years for me to get over. From that, I now take into my 40's a true understanding that I cannot control how other people feel and act. I also am really, truly, finally ok with the fact that not everyone likes me. Life isn't a popularity contest. I don't want to waste precious time spinning my wheels and fretting over the handful of unhappy when there are so many things, so many relationships to be grateful for and to celebrate. I have a wonderful, diverse circle of friends that I know love me. This particular year I have not been able to be the friend I want to be to them, but I don't have as much to give this year as I will in coming years. Hopefully, we can take turns and I can be the kind of friend to them that they have been to me this year. Going into my 40's, I know my family loves me even though I am a real brat sometimes. And, I KNOW my husband loves me. We are best friends, we laugh together, we sneak little moments together, and we trust each other. I know this much, too. I am a good mom. I didn't start out that way, but I am striving to become better. I know that I am not perfect. Honestly, I don't really want to be perfect, perfect is boring. I'm still working on the weight thing. Some days I care less than others. By care, I mean accept. I eat reasonably well, I exercise a reasonable amount of time. Perhaps one day I'll reach my goal, but my biggest goal with my appearance is to pass along to my daughters some sort of self-love. I don't want them to think that it's alright to put so much emphasis on their physical appearance. I'm hoping to accomplish that by 50...hey, like I said, I'm not perfect! So, bring on my 40's. I'm not scared. Honestly, I'm not thrilled either. I regarded my parents as old when they turned 40. I am dubbing my 40's the decade of acceptance, until I change my mind. They are only just here now and the best part has always been that the chapter has not yet been written.

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May I have the envelope please

2/11/2014

2 Comments

 
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The award for most supportive role in a series or drama is...Kady Moore! Applause! Cheers! Kady has always been a loving, nurturing soul. From the time she was a toddler, she would place baby dolls all over the floor, face down, and cover them each with blankets. Then, she would patiently move from baby to baby and pat their backs while they fell asleep, kiss their heads, and then move on to the next one. We called them Kady's land mines.  There must have been over 20 of them at one time. At the age of 2, she successfully ran a very busy, albeit sleepy, daycare center!

That nurturing nature has only grown and blossomed in her. She is 8 now. She has matured beautifully from the hot-tempered, stubborn toddler who used to throw  herself on the floor, face down, in a fit of rage when she didn't get her way to a tender-hearted, easy-going middle-schooler.  Kady gets her temper from me, I hate to admit. She would be so visibly upset at times that her face would turn down in a sincere, non-duplicable frown that exactly resembled the front grill of a Mini Cooper, which afforded her the nickname, Cooper. "Oh uh, mom, she Coopering" Faith would say.  Thankfully, though, Chandler, who has always maintained a calm center, would be the one who could settle her down. He would hold her tightly while she thrashed about and explain, once she was calm enough to hear his words, that she needed to sit alone until such time as she was composed enough to join the rest of the family.  I, on the other hand, would just lock in her in a time-out and hide in the other room listening to her kick the door while I wondered what sort of brain damage occurred during her difficult delivery.  Over the years, it took her less and less time to compose herself, so that now, the worst she gets is a little huffy.

Kady has not yet been blessed with the wonderful circle of friends that her big sister has. I don't know why that is. She has friends, some really nice ones, but I think her favorite friend has always been Faith. Sadly, Faith usually blows her little sister off and finds Kady's admiration more of a nuisance than a blessing. I am the little sister in my family and was dealt with similarly by my own sister, so I feel like it's my mini mission in life to make Faith see all of the wonderful qualities her little sister has.  

The day we took Faith's x-ray, the day her pediatrician called to say that we needed to go right away to PCH, is a day I wish I could do over.  It all happened so suddenly and the doctor made it seem so urgent that we neglected to really think about what this was going to do to Kady. I remember it clearer than I remember most things. I ran across the street to my relatively new neighbors, the Scott's, explained what was going on and asked if Kady could spend the night. Kady enjoyed playing with their 5 year old daughter and 3 older sons, but she really didn't know them back then and had never slept over at their house.  She was scared, confused and tearful, but she sucked it up an went. The Scott's were wonderful to her. They kept her busy and fed and I am grateful to have had them, but that was the wrong decision. An epic parental failure in my eyes.  We should have taken a little more time to consider what Kady needed. I don't really know why I didn't have her go to my mom's or, better yet, have my mom go to her.  I just don't remember that part. I can't take it back, that much I know.  I used to joke around that Chandler and I weren't saving money for weddings, we were saving money for counselors because it seemed inevitable that we will screw the kids up somehow. Well, Kady, who used to enjoy sleepovers has essentially refused to go on any sleepovers since then.  Getting her to go to a play date is a struggle, too.  She just wants to be near home.  That makes me really sad for her, although I guess the alternative would be worse. What if she never wanted to be home? Truthfully, I kind of feel the same way. I just want to be home. Safe and sound in our own little family fortress.   I was so concerned about Kady's sudden abhorrence of sleepovers that I spoke with Kim, the PCH child life specialist, about possibly getting Kady some counseling. Bless that woman for reminding me that a lot of siblings of cancer patients sometimes wish that they were sick, too, so that they could stay home and have more time with mom and dad. With all of the fear and uncertainty over Faith's health, it's no wonder all Kady wants is the stability of home. If course! How simple and how true. There's nothing wrong with Kady, nothing at all.

After we got our bearings Chandler and I decided that we would work diligently to not leave Kady out and make it all about Faith. We have planned special dates with her, had lunch with her at school when we could, and, from time to time, brought her presents from the hospital. When we were spending so much time at the hospital, Kady would look forward to coming to see Faith. Now that it's RSV season she is not allowed past the 2nd floor, a fact she is most unhappy about.  Thankfully, there are no planned trips back. Faith belongs to  a program called Chemo Angels. The Chemo Angels are people who have gone through chemo and who volunteer to send Faith little packages to cheer her up along the way. The packages come about every other week and contain anything from stickers and markers, to candy and new books.  Chandler noticed that Kady would begin to slump every time Faith got another package, so he started to "mail" Kady packages. He would put a daddy love note and include some stickers, candy or gift cards for her and slip it in the mail box. She would light up when she got those. So much so, that she has voluntarily made checking the mail her responsibility!  Once again, it's the little things that truly make all the difference. And, once again, I have to say how blessed I am to have married a man that is my friend, my love and a wonderful dad!

One day while Kady and I were driving home from the hospital, I asked her what she thought about all of this.  She said that she was sad and wished her sister wasn't sick. I asked her what she REALLY thought about it.  How was it affecting her.  I gave her permission to be as honest as possible by including my feelings of anger over having to be at the hospital so much and other details.  She shocked me. She said that she was angry because the whole time that she was 7 years old all she wanted was to be 8.  She figured that 8 was going to be vastly better than being 7 and that Faith being sick was really screwing that up!  What?!? When I asked her to clarify how 8 could possibly be better than 7, she confessed that she thought her sister would want to play with her more when she was 8. That's the age that you get out of a booster seat and truly become a big girl! But now, her big sister was sick and couldn't play regardless of if Kady was 8 or not.  Heart. Break. Ing.

Kady is human and she 8 AND she is a girl, so naturally there are times when it's evident that she is tired of our little world revolving around planet C. But, really, truly, those times are few and far between. That child's heart is so full of love for her sister, for her whole family! The days leading up to Faith's surgery, Faith was as cool as a cucumber, but Kady was a wreck. She sobbed every night for sister. Tears of worry that her sister would hurt, tears of sadness that her sister had to even go through it at all, and of course, tears of fear that her sister would lose too much blood and die. I had no idea where that one came from. We would hug her tightly and console, trying to convince her that Faith would be ok. That was hard considering that I wasn't completely convinced myself. The surgery was on a Wednesday, dance day for Kady. This child, who loves her dance class and looks forward to it every week, had to sit on the side and watch because her stomach was so knotted with worry that she couldn't dance. A couple weeks later, while in the hospital with Faith during a round of chemo, Kady's teacher texted me to share that Kady was sobbing after recess because she was missing Faith. The principal had to come take her on a little walk and reassure her that everything would be ok. I cannot say enough about the gratitude I feel for both of the girls' teachers and all of the staff at their school. The days just after our diagnosis, Kady's teacher would walk her out to the crosswalk to alleviate some of Kady's anxiety about who was picking her up. She didn't have to do that, I didn't ask her to, but she did it anyway. For weeks, she took extra time out of her day to take extra care of my baby.

Kady is so much better these days. On a typical day, she wakes up in a good mood, smiling and joking around, sometimes even declaring that she's happy. When I've asked her why or what she is happy about, she just shrugs her shoulders and says she's not sure why. She makes certain to kiss her sister before she heads off to school, then she's off. Like a little Kady tornado, she swoops out the door and then the air is still, a little less enegergized for sure. I know a big part of her healing was the great group of neighbor kids she rolls with every afternoon. I thank God everyday for them. I also think she has just gotten used to the new norm and feels comfortable with her roll. She did make a point to thank Chandler and I during our celebration over our last in-patient for never letting her feel less-important!

I could go on and on about all of the selfless, wonderful ways that Kady helps out. Or, I could share a multitude of cute "Kadyisms" including the way she adorably messes up big words, but the bottom line is this...she rounds our family out. To quote Jerry Maguire, she completes us. She is the light in our dark, the sweet in our sour, just the perfect amount of spunk, tenderness, humor, and compassion all rolled into the most perfectly disheveled little 3rd grader that ever came up and held your hand at just the right moment kind of kid every family needs, and we just love her to pieces❤

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