Did I just write about contentment? I've already fallen off the wagon. I am longing for fall to get here. Be gone hot days of summer. Your whole state of mind changes with a Pumpkin Spice Latte in your hand.
Today has been a hard day. Lucy is really struggling with her mucositis. (Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer). She went to sleep last night around 9:00pm and didn't wake up, minus the potty trips, until 1:00pm this afternoon. Ever since then, she has done nothing but lay on the couch, vomit and well, has stayed pretty miserable. Her poor throat and stomach are so raw that she is now vomiting blood. The only silver lining that we found in our gray skies today is the doctor saying that maybe her neutrophils are coming back and that could be making her fill so crummy. That's what I'm clinging to tonight.
Cancer is horrible. It is evil and nasty. An adult suffering through cancer treatment is hard to imagine. A child suffering through it is impossible to comprehend. But I have to remember that this is just a tortuous means to a wonderful end. Last night as I talked to God I expressed my inability to grasp what has been going on in our lives for the past almost 7 months. Even now, it is as hard to get my head around as it was on February 23rd. Some days I look around this hospital and ask "How did this happen. Are we really here?" It's like I'm living in some odd parallel universe. One that you only read about in sad books or movies.
But in some strange and twisted state of acute awareness, I have been forced to look at my life from an outsider's perspective. And I have to tell you that I haven't liked what I've seen. There is too much doing and not enough living happening in the Krull household. Going, doing, busy, busy, busy. Way too little time spent playing with legos, reading books or teaching my children about God. Don't get me wrong, we didn't have all our priorities out of whack. We just need to spend a little time refocusing on the important things in life. And I do think that team sports, church activites and the like are important. They teach our children such valuable lessons. I just don't need them taking precedence over the REAL important things in our lives. If my day is so full of "to-do's" that I don't once take my babies by the hand, look them in the eyes and tell them that I love them with all my heart then I need to change some things in my life.
I've realized that I what I really miss during my time here in the hospital is time spent with my family. I've always known that Erik was my best friend. That's never changed since we met some 16 years ago. I do think, however, that I have taken our friendship for granted. Not our marriage, but our friendship. It's been so long since we've made each other a priority. And you know, I have to say with all honesty that if Lucy had not gotten sick, or if we had not gone through some equally traumatic life experience, I don't know if we would have figured that out. And I thank God for this opportunity to start over.
Lots of starting over. Husband, children, friends, God. And myself to be honest. I have such a desire to start exercising again. I want need to be in shape so that I can give my whole self to the family I love so dearly. I long to be in the kitchen cooking healthy meals for them. Date nights are going to be a monthly event for Erik and I. I appreciate the opportunity to be a better friend in the future. I also look forward to returning to church and I continue to pray that God will open my eyes to what wonderful service lies ahead for me/us.
I also think that this experience has helped me with something I have been working on for a long time. For so many years I struggled with such a materialistic worldview. It was as if I was always wanting more. I was trying to fill a hole in my life I guess. Its taken several years but I've come a long, long way. I still have my moments of relapse, don't get me wrong. I still struggle with the "wantsies" sometimes. But through lots of prayer and tons of patience from my husband I've made some serious changes. And not to sound like I'm contradicting myself from the above paragraph, but sitting in the hospital room tonight I have never felt more content in all my life.
Yes, I long for my child to be well. I desire to be home with my family. But those aren't longings for material things. Those are the yearnings of a mother desperately wanting her family to be one again. No, I am content with life. I have a husband who loves me more than I know, we have been blessed with 3 perfect children and we have the ability to pay our bills, put food on the table and have a nice roof over our heads. We are surrounded by parents, grandparents, siblings and cousins who have all served as rocks during this trial. We have wonderful friends who have supported us so much during this time and we have been blessed daily by the kindness of strangers. Lucy is receiving the best care any child could hope for in this situation and I have the freedom to worship a marvelous God without fear of retribution. Is there really anything else in the world that I need?
I told my pastor the other day that so many of us go through life stuck in a horrible rut. Most of the time we don't even realize it. We've been there for so long that it has become a way of life. I compared it to driving down the interstate. Big trucks have created ruts in the road that you don't even know are there until it starts to rain. Then, you realize that driving in those ruts is where you begin to hydroplane. You know that you need to get out of the rut but it's really hard. Your tires are so used to driving on that worn path. It's the easy way to travel. It's only when the rain is so bad that you have to take both hands and literally concentrate with all your might to pull your wheels out of the rut. Then the hard part comes when you have to work to keep your care from vearing right back to those worn in ruts. But you know that driving outside of the ruts is the only safe way to get to where you are going.
That's where I was in life. Driving in the ruts. It was the easy way to do it. Not any more though. Our family is going to be making our own paths. We are going to make new roads to travel on. I know it won't be easy, but neither is kicking cancer's butt. If "we" can do that, we can do anything.
Well, another day has passed and we are still bunkered down at the Jude. We have spent the day doing a little OT, school work, playing Wii and resting. Today was the first day in more than 4 that she has actually been out of the bed for any length of time. She is clearly feeling better but far away from 100%. I asked the doctor today how long she had to be "recovered" until she was ready to start round 4. His answer was "ready is ready." That just means that one day with count recovery is the same as 100 to them. That means that just when her little body has come through 3 weeks of hell, it is officially ready to do it again. Makes me want to cry just thinking about another month of this.
One more month...doesn't seem possible. One more month, Praise God!
Here are some pictures from my phone that I took last week. My friend Allison came to visit and had as much fun visiting with Lucy as she did me :)
That same night my mom and I met my brother and father at The Flying Fish downtown while erik's parents visited with Lucy. With only 2 adults allowed in the room at a time, we have to do a lot of moving around when we have visitors. This was our view when we got back and were taking in the night air.
My baby brother and Lu.
This weekend Ella spent time with Andi and Gracen. The girls spent the night and everyone in the house was up by 6 am. We were outside playing by 7! So much for getting some rest at home. They were quite entrepreneural, selling bookmarks that they made and pet sitting services. It was so cute.
And when I needed to step inside, this is how they babysat Jack.
I went home this weekend to spend time with Ella and Jack. It was a wonderful 48 hours, but I missed Lucy more than I could ever convey. She has slept for the larger part of the last 4 days, hardly getting out of bed at all. I'm so ready for her to start feeling better....and I dread round 4. I'll update and post pictures tomorrow.
I have been smiling and snickering all day. Never mind that my baby girl is so tired she can hardly walking 10 feet. Erik and I had a wonderful morning, filled with positive encouragement and chock for of hope for the future. We met this morning with Dr. W and reviewed Lucy's MRI. We contrasted, compared, marveled, questioned and gawked. We left in sheer amazement at what God has done in Lucy's body through the help of doctors, nurses and medicine. Seeing the tumors then and now has left me speechelss.
This is not to say that we are out of the woods. We know we aren't yet. However, things are definitely headed in the right direction. Thank you all for continuing to pray for Lucy. She is so weak and tired right now, we would appreciate any extra prayers that you might can send her way.
And please don't stop praying for the other children that we know and those that we have never met here that battling their own cancers. Kellan, Justin, Lanie, Haley, George, Ivee and so many more.
And not to ever diminsh Lucy's struggle or any words that I might have written, I wanted to share an email that I received from my SIL Holly today. She is from the DC area, along with my Aunt and Uncle. This is what has made me snicker today...
Blame it on the lack of sleep, but I thought this was hilarious! Look, I'm laughing again.
Before Lucy started round 3, I took her to meet her classmates and check out her classroom. It was a hard 1.5 hours on her, as she was really tired. But she was ecstatic to be there and wanted so badly to just stay all day. These pictures are a little grainy because I had to use my phone.
These pictures were taken during our fever stay after round 2. Little Miss decidedthat she wanted some orange chips. After about 2 she vomited them all up and immediately asked for her chips back. Then began eating again.
PT on the tricycle
OT with Ms. Jordan. Coloring on the wall trying to gain neck strength.
Lucy LOVES playing with her Trios. I highly recommend these blocks if you don't already have them. Lucy, Hyatt and Bo have spent many an afternoon creating some pretty cool things with these blocks.
Tonight we are hanging low. Listening to Lucy's playlist on Erik's Ipod. This would include the Zac Brown Band, REM, Black Eye Peas and the Beatles. She's got great taste in music!
Taking a bath, just enjoying being a family. Well, a family minus two. Trying to make the most of an unfortunate turn of events. Glad Lucy is feeling better, if only for a little while, thanks to the Morphine that she had to have tonight.
Remembering that life is good. We take the good with the bad. So fortunate we have so much to look forward to. Ready to make new beginnings. Ready to start over. Thanking God for the opportunity for a do-over in life. Reprioritizing some things. Finally figuring out what really matters.
My husband would kid and say I never admit when I'm wrong. I, on the other hand, feel as if I am actually pretty good about admitting when I'm wrong. And this time...I am wrong! In the post below I compared pictures of Jack and Ella and swore he would look like his sister.
Well, we are still here. Rocking along as well as possible. Still at the Target House. No fevers! Our days are full of doctor appointments and therapy sessions. Our down time consists of Lucy laying on the couch watching movies or sleeping and mom and I are busy catching up on emails, blog posts and a bizillion thank you notes. She is so very, very tired. I've never seen a child so worn down. Just walking to the bathroom is an all-out effort. I know this is temporary, but it is so hard to see her this way.
We remain ever grateful of God's blessings and are reminded constantly of the struggles so many families are facing everyday. Some days I am so grateful to only be dealing with the issues before us. Not so many more.
I am so behind in blog posts. I haven't even posted about my birthday, and that was over 3 weeks ago. Ella turns 8 next week. I am in denial. Jack turns 1 in 3 weeks. More denial!
I went home this past weekend and was able to get some random shots of my Jack. Ella was the social butterfly and I hardly got to see her at all!
Today was at St. Jude was Doggy Daze. Child Life has therapy dogs come in and the kids are allowed to play with them. We've never been able to enjoy Doggy Daze due to scheduling conflicts, but today it worked out perfectly. Lucy had a great time and back on the band wagon of wanting a puppy!
wonderful news. Lucy is being discharged to the Target House. She is feeling so much better. my trip home has been cut short as i neped to get down to the hospital to help Erik pack. I have to be honest though. My excitement about Lucy is, for the moment, overshadowed by the immeasurable saddness i feel about leaving Ella and Jack. Leaving Jack in the church nursery just now not only brought a flood of tears but a flood of 6 months of bad memories as well. I am ready for this hell to be over I need it to be. Lucy needs it to be. Our family needs it to be.
I am now going to try to get the image of Jack crying for me, reaching out with his hands as I was leaving, and go celebrate with Lucy her new freedom.
Lucy being discharged is such a gift on the Sunday morning. What a reminder of God's continuous blessings. Even through the highs and even through the lows, I am reminded that God has a greater plan. We WILL have a testimony to share. I pray that God will continue to provide me with the strenght to get through the next 2 months. Thank you all for you countless and ceaseless prayers.
I've been sitting in front of the computer for 5 minutes trying to come up with a catchy title for today's post, but nothing comes to mind except "the day that never seemed to end because it was full of frustration and disappointment and generally just sucked." I didn't think that was a winner, so I'm just moving on.
It was another long night last night. No fever, but lots of getting up to use the bathroom. Luckily it was really rainy and dark outside this morning, so we all slept in until around 9am. The the barrage of nurses and doctors began their exams and poking and prodding. Around noon, Dr. T came in and told me that unless something changes he didn't feel comfortable letting us leave tomorrow. In fact, he feels it is best to let Lucy stay here until her counts drop then come back up. That means we will be here for another 2 weeks. As he was talking to me and my mom big ol' elephant tears welled up in my eyes and I began to cry. I knew in my heart he was right but it was a hard pill to swallow. In his words, "Lucy is too fragile to be outside of the hospital right now." I agree. She is so frail and tired and feels so crummy. It's hard seeing her like this. She tried so hard to do PT today, but her little body wasn't able to keep up with her will. The desire was there, she just couldn't make her body cooperate. It made me mad.
That wasn't the only thing that made me mad. I stayed in a general state of emotional instability today. I cried a lot. I even yelled a couple of times. I am mad today. I hate this life we are living. I hate that my child has cancer and will have to deal with the horrible side effects of chemo and radiation the rest of her life. I am mad that like my friend Cammie and her daughter Emily, we will still be riding to Memphis when Lucy is 20 with knots in our stomachs praying for God's grace as Lucy has an MRI. I hate being away from my other children. I hate that our family hasn't really been a family in 6 months and we still have 2 more months to go. I hate cancer.
We'll get through the next few weeks. We always do. I'm dreading it though. Mainly for Lucy. She is going to be stir crazy until we get out. Right now she feels bad enough not to care. But eventually she will perk up and will want to get out of her room. And that's whats so maddening. When we are on the BMT floor, she can't leave at all. I went to Target today and bought a few board games and grabbed some of her art things from the Target House. Hopefully we can find enough to do during our days to keep her distracted.
Thank you all for your continued prayers. They mean the world to us.
I wanted to share these pictures of today. Lucy and her new baby doll that was made by Erik's friend Suzanne. She sent Lucy a letter telling her to draw what she wanted her doll to look like and she would make it. At the time, Lucy wasn't up to drawing so Grandma helped draw and describe what Lucy wanted her doll to look like. Thank you Suzanne for this sweet keepsake that we will cherish forever.
My "Aunt" Jill came to visit, too. She's really my 2nd cousin, but I've called her Aunt for my whole life. I'm not sure how that started, but she will always be my sweet Aunt Jill. It was great to hug her neck and tell her I love her. I don't see her very often at all, but we've always had a special bond.
Last night was bad. Around 11:00pm Lucy spiked a fever. Erik went on to bed (he was on morning duty) and I sat on the potty chair by her bedside until 1:00am until her 104.3 fever came down. I think I went to bed, I don't remember. I might have just slept on the potty chair. I just know that I woke up at 6am in my own bed. She shook with chills for what seemed like an eternity and her breathing was so erratic. There was no way I could sleep with her in that shape. The docs started her on Vancomycin and gave her some Tylenol and she began to settle down.
This morning she spiked another low temp. She had an EKG early this morning, which is mandatory before they start Cycloposphamide on days 2 and 3. She screamed through all of that (she hates those sticky probes) and then passed out asleep. I know she has to be exhausted. She slept so restlessly, we woke her every 2 hours to pee and then was woken up to an EKG. Just now she had to have a nasal rinse to culture for an infection in her sinus cavity. She has had some colored mucus, so it was a mandatory test. She was so big and brave, but it really scared her. Scared me, too.
I'm happy to see her resting right now, watching a little TV. Our goal is to make it through this last day of chemo without any major hiccups. If the fever doesn't subside, there is no way we will get to leave on Friday. That would be so disappointing for all of us.
I'll make this short and sweet. Erik and I are going to try to get some rest since we will be up every 2 hours making Lucy go potty. It's a fun 48 hours for us all, let me just tell ya! Lucy has felt like crap all day long. Groggy from anti-nausea medication, nauseated from chemo, tired from vomiting so much and now she has a fever of 102. All around it has been a not-so-good day.
I will give her credit to the fact that she just won't let this keep her down. She worked through OT and PT even though she felt horrible. She visited with her grandparents and sister, even though she would rather curl up in a ball and sleep. She's such a fighter. She makes me want to be a better person. I love her so much!
OT with Miss Jordan
Color time with Daddy
Ok, this gift falls into the "Crazy Aunt Holly" category. We love our new Crocs and we love you Holly and Sada!
Lucy asleep tonight. Resting peacefully after a rough day. She loves the new Buzz blanket she received in the mail.