Quick Update

This morning at about 7:15 the nurse came into our room to get Clara prepped for surgery. Fortunately, there weren't any delays and they got her right in to the OR. While we were in surgery prep, the anesthesiology nurse asked Clara if she wanted to go blow up a balloon (code word for inhale laughing gas). Clara jumped out of my arms and into hers, thrilled at the chance to get a balloon. It was perfect.

An hour later the surgery was done and Clara had her line back in, albeit in a new location - more scars, ugh! She came out of sedation with an atypical "I sleeped good." Very cheery and happy, which isn't normal for someone who has just had her insides explored.

We brought her back to her room, got her situated, and dressed, and she's been sleeping ever since. Poor little girl needs to make up about 12 hours of missing sleep from the last 2 days.

respite

Chandler, Carson, Baden, Kate and I rolled into our driveway at about 11 last night. It took awhile for the boys to settle in after we unpacked the car. They had to check everything out. Carson's banana pepper plant died, there was a big hole to hold our trampoline (our planned summer project done thanks to the service of many), the house was a sweltering 86 degrees and there were 15 messages waiting on the answering machine. It was nice to be home. But, we all felt a little empty that Brian and Clara were still in Spokane in the hospital. I now know how Brian felt when Clara and I were away. Baden said it best the first few minutes after we got home last night, "I wish Clara's cancer would go away so we could have a normal life again." 

On the go.
I love this normal picture from a year ago.
I can't wait to take before church pictures in front of the red door again. 

Isn’t that what we all desire: to be the heroes and heroines of our own stories; to triumph over adversity; to experience life in all its beauty; and, in the end, to live happily ever after? DIETER F. UCHTDORF

post edit: I started this post this morning. This has been an emotionally draining day and I am ready to put it to bed! Because of the drama in Spokane we are heading back to Clara and Brian sooner than expected so I can be there when she wakes up from the anesthesia in the morning. Based on the past 2 trips I've made home in the last 9 weeks I am beginning to wonder if they are worth it. 

Understanding

Wisdom is the principal thing; therefore get wisdom: and with all thy getting get understanding. Proverbs 4:7

Since Clara first entered the hospital over 2 months ago, I have had a lot of time to read, to think, and to contemplate life and it's many challenges and opportunities. Just this morning, while Clara was sleeping, I finished reading Charles Dickens' Great Expectations, the story of a boy (Pip) who lived a contented life, but wanted more and was blessed/cursed with almost everything he thought he wanted. At the end of the book, the boy (now a grown man) returns to his roots and realizes there is goodness in contentment and in living a good and honest life. People he once loathed because of their lowly station in life become the boy's heroes and greatest source of admiration.

I hope that Clara's cancer has helped me to get wisdom and understanding, much like the boy Pip received. Most of all, today I am thinking about motivation. Why do I do the things I do? Is it to be seen and admired of others, to have something to be proud of? Is it because I expect something in return? Do I do the things I do because I am trying to be more Christlike and truly care for my fellow man? Oftentimes, the answer is "I don't know." I hope that I have pure motives for my actions, but sometimes I question myself.

Natasha and I have certainly reexamined our priorities since Clara's diagnosis. Time is our most valuable asset, and it must be spent with our family, particularly with our children. Even if that means the seven of us spend most of the summer in a one-bedroom apartment. We will spend more quality time with our children because we love them and because we want the best for them.



Many of this blogs' readers (probably all of you) are particularly interested in Clara and how she is doing. We came back to the hospital on Wednesday for round 4 of her chemotherapy. She began Wednesday evening around 6:00 with 3 different drugs, which I will likely misspell. Vincristine is injected into her line in about 30 seconds. She gets this 3 times, once per day. Cyclophosphamide goes in via IV drip over about 6 hours. She gets this twice (done with this now). Doxorubicin is also injected via IV drip over a 72 hour period. All this means is that Clara is constantly hooked up to her "robot." No running, jumping, or scootering for Clara this time.

The previous paragraphs were written during Clara's nap this afternoon. Things have taken a turn for the worse since then. Clara awoke from her nap in good spirits, wanting to eat, drink, and go for a "litto walk." Her walk ended abruptly when I noticed she had pulled out her central line. With all the doctors and nurses have taught us about these lines, and knowing Clara's susceptibility to infection, I panicked, picking Clara up and running down the hall to the nurses station. In a period of a few seconds I was dripping cold sweat as my heart raced as if I'd just sprinted a mile. The charge nurse quickly ascertained the severity of the situation, calmly informed the oncologist and got to work. Within minutes Clara's wound was stabilized.

During the whole episode Clara was calm, but frustrated that we had interrupted her playing. I am hopeful that she didn't get any bright ideas about pulling her line out when she really wants to have a good time. After she was patched up, she ran and jumped up and down the hall and had to retry every toy car and scooter in the hospital. She was euphoric. This didn't last long either. Because of potential contamination with the chemo drugs which dripped into her system outside of her veins, Clara needed another IV drug. IV drug + no central line = IV in the arm/hand. Three tries, a lot of blood and tears (hers and mine) later, and she had the medication that she needed.

Ever the good-humored child, Clara looked at the work of the nurses and said, "Clara funny hand."

Because of Clara's handiwork and my inattention/inability to protect her from herself, tomorrow Clara will undergo surgery at 8:00 am to place a new Hickman line in her chest. When she is sufficiently recovered, she will resume her chemotherapy regimen - one quick drug and the other over 24 hours. After the surgeon explained this all to me, I had a small chat with Clara, 99% of which flew right over her head. She did seem to pay particular attention to the part where I told her "save the drama for your momma."

Stay tuned . . .

Hope

Today we were advised to not bring the kids with us to Seattle for Clara's stem cell transplant. I almost started to cry right there in the clinic. Disappointing for sure, but I'd been doing some reading on transplant and had pretty much come to the same conclusion. 

I know it will all work out. It has so far and always does. Not how I'd have chosen many times, but always so much better. 

We have about five more weeks of togetherness (minus the next two chemo rounds) and we are soaking it all in. The past week has been heavenly with all seven of us together under the same roof for more than 3 nights. It's also been a week doused in reality: some arguing, some timeouts, some messes, some insanity. Tonight Baden said the family prayer and closed with, "Please help us to wake up happily and play outside." Sometimes my boy is so perceptive!

Baden making styrofoam "snow". Big mess! But, look at that happy face! Totally worth it. 

Will you offer extra prayers for Clara this week before her chemo starts on Wednesday? Pray for her body to respond to the treatments she is getting. Miracles happen and we hope it is God's will that she will be healed...soon. Thank you friends for your prayers, cards, messages, packages and generosity. I can't say it enough. We are touched every single day by the kindness and love we feel from you. You are a blessing to us and not a day goes by that we don't pray you will feel our gratitude.We love you.  

Rolling along...

During transfusion...the chocolate chip cookie was just what she needed ... for lunch :)

Clara had a clinic appointment today. We had high hopes that we would get the green light to take her home before she started chemo again next Wednesday. They always draw her blood and then we wait for an hour and a half before we see the doctor. The nurse informed us after the results came back that her platelets were 6 (6,000). Normal is 120-450 (120,000-450,000 or so) Numbers under 10 usually require a platelet transfusion. The low platelets explains her easily bruising. (Like that little one on her head.)

During our visit with her oncologist he verified that she wasn't taking any medications. "None," I affirmed. "Not even the Sceptra?" he asked. "Nope." and then it dawned on the she is suppose to take the Sceptra, a weekend antibiotic twice on Saturdays and Sundays. I totally blew it this past weekend. He reassured me that "these things happen." He asked how she was feeling, how her energy level was. "Oh she is doing great! She is climbing on the playset, jumping on the trampoline...." It was then I noticed his startled expression and he informed me he wasn't suppose to be hearing those activities performed by a little girl who has such low platelet numbers. I think that was strike 2 for us. Well, now we know. But I really had no idea we were suppose to be so careful! It's impossible to keep Clara from playing when she feels like it. It might be easier if she didn't feel like it, you know? I guess I need to adopt some helicopter parenting techniques I am not good at.

We hope that we are on target for surgery the beginning of September and head to Seattle for transplant the beginning of October, but we know how timing can change. I think that with this schedule the boys will start school back home, even though they don't want to. The time after surgery we were told can be demanding. They will go with us to Seattle and the doctor told us today to expect about 3 months for that ordeal and then we will come back to Spokane for radiation and "other stuff" till May/June. And yes, I'm trying not to think about all of this.

Meanwhile, all of us are enjoying being together. A couple of nights ago Kate and Clara fell asleep holding hands and I couldn't keep myself from tearing up at their sweetness. It was a little sign to me that what Clara needs right now is her family to be with her. I hope these days will give her the boost she needs for the trying days she has ahead of her.

Spokane just got 7 new residents

Posing before church today. Clara was pretty devastated she had to stay behind.

All 7 of us are relieved to be in the same zip code again. The decision to stay together from here on out brings peace and contentment to all of us. We're all up for the adventure. 

The pioneers lived in one bedroom homes without electricity and running water. Surely we can do it with both of those luxuries. My sanity may be running a little low once the kids start spending more time indoors, but we'll just continue to take it a day at a time. 

Clara is on day 11 post chemo, within that 10-14 days when fevers usually come. So far so good. She is doing awesome! This morning she said to me, "I'm not gonna throw up today, mom." And she didn't. First time in a week. I think that's all behind us till the next round starts on the 26th.

She's got a week to pack in all the fun with her brothers and sister till she has to be back in the hospital. At least now they can come and visit her every day. It will be so nice. 

And the saying, "absence make the heart grow fonder"? It's totally true.

HAPPY DAYS

Clara was released from the hospital on Tuesday evening. She was ecstatic as you can see.

Before we left our friend Nettie brought Clara a doll that has a pseudo hickman line just like Clara. She knew just what to do. Washing the tubies with alcohol wipes, flushing the tubies with saline and drawing blood. She definitely needs to be a nurse some day.

I was a little apprehensive to bring her out of the hospital to our Spokane home because of the nausea and was really questioning it during the night Tuesday, if you can imagine. But, after resting the day away on Wednesday, she only had one episode today. This girl is amazing.

Brian, Baden and Kate came back from the lake Wednesday evening to be with us. Clara is on cloud nine. So am I. Brian and I decided that for the rest of the summer we will live in Spokane in this basement apartment all together. It's going to be...awesome! Brian will just commute. This is such a blessing to be able to stay here. The Rawlins' are complete angels.

Tomorrow morning she needs to go back in for labs, her counts should be on their way down, but based on her energy level today I wonder if they actually are! But, tomorrow is a new day...

As for me, I have been able to get out and get some exercise the past two days. After two months of sedentary living, it is invigorating.

Well, I better stop, I've done this with my phone and it is a pain. Thank you friends for your continued prayers and generosity. In the next day or two I'll post a video of how the prayers are being answered.

energizer bunny

The good news is Clara finally ate some normal food today. The bad news is she wasn't able to keep any of it down. One of the chemo drugs she had this last round is a rough one. The nausea side effect can last up to five days after the last dose. She bounced back mighty quick after each episode today, and there were quite a few of them. One thing is for sure, she has got a lot of energy and loves to strut her stuff. She wouldn't take a nap till 5pm and then woke up at 7pm. So tonight, while all the other children were sleeping, Clara was roaming the halls and hanging out with her nurse friends at the nurses' station. She was off her IV for most of the day today which is probably why she didn't sleep. Tonight she will get some fluids and Zofran in hopes that she can be discharged tomorrow morning. I helped her say a prayer tonight before she went to sleep (11:30!) that she can feel better so she can leave the hospital. It was completely adorable! She really wants to get out of the "hopsbitall".

Clara talked to Brian on the phone tonight while he is single-parent-vacationing at the annual week at Priest Lake. The kids are having a blast playing with cousins, tubing and playing in the frigid water. I'm glad Clara doesn't know what she is missing out on. I hope next year Clara and I will be there and this will all be but a memory.

Determination

Tonight marks 7 weeks since the beginning of Clara's fight. So far, she's winning. Clara has come so far in the last 7 weeks it's incredible. Today, as Brian and I were watching her run and play with her siblings around the hospital we both agreed that she looks and acts like she's all better and we should be able to take her home forever. If only...

The challenge this week is keeping Clara content tethered to her IV pole. The hour I've begged to keep her unhooked proves to be the happiest and fastest part of our day. She has been feeling much better than expected with this 3rd round of chemo. She just has a few sick moments each morning and then she is good to go! And that's exactly what she wants to be doing---going. We are so grateful she has that desire and ability at this point. I'm savoring these good days because I know they won't always be around. 

Our Lybbert fan club, just missing Clara and I

Clara and I looked at every picture from the Hope for Clara 5k on Saturday. She loves the pictures just as much as I do. I shed many tears seeing the faces of so many who walked and ran in honor of Clara. Your support does more for Brian and I than you will ever know. 

This evening while she was still unhooked before we sent off Brian and the kids she ran onto the elevator after someone got off. She was determined to push the button and go down the elevator to the car and didn't want me anywhere near her. Maybe she thinks I'm holding her captive. She put up an impressive toddler fight when I picked her up and brought her back to the room. The whole floor know how mad she was. Yes, she is definitely feeling better!

very determined

Since tonight is Clara's last dose of chemo the plan all along was for her to be discharged Monday. The only problem is, she isn't eating. At all. Besides the handful of blueberries she had today she hasn't eaten for several days. Her beloved sippy cup of milk that has always pulled us through is being refused. Tonight she took a sip and said, "Milk is gross!" She's thriving on IV fluids because she's maintaining her weight. Tomorrow morning the doctor decided to take her off of the fluids to see if she will have a desire to eat and drink. Hopefully her appetite comes back so we can be out of here until the next go round at the end of the month. Afterall, home is the best place to heal.

Cancer, go away!

Clara started round 3 chemo tonight. She is on a heavier duty combo this time around. With these next few rounds of more aggressive chemo drugs I would hope that we'd start seeing more shrinkage. The scan reports from this past week are positive in that there is no new growth and some minimal decrease in neuroblastoma. We are just glad that there isn't anything new. There's no question she is getting better simply based on her ability to walk, run and jump sans any pain medicine. She is not the little girl I brought to the ER 6 1/2 weeks ago in more ways than one. Lots and lots of miracles for Clara. 

I taught Clara two new words today: chemo and cancer. We talked about her chemo medicine and how it gets her cancer all gone. Then she said to me, "Cancer, go away! Cancer gross." Smart girl. She's blessed to have so many people praying for her. Because when it comes down to it, prayer is more powerful than any chemotherapy drug. 

Room with a view...

We are back. A day earlier than we were expecting because of some difficulties Clara had today after her 4.5 hours of sedation while she had some scans and tests, but she's is doing better. In short when she was in recovery from the anesthesia her fever quickly spiked to 105, her skin was grayish/blue and her blood pressure was too low. The rapid response team came in and did some breathing treatments for some upper respiratory congestion and stabilized her and she started showing improvement. They took her to the PICU for the afternoon and evening for observation and then we were sent to the oncology floor tonight. She is doing much better, but is very worn out as you might imagine. I attribute my ability to stay calm during the drama to my daily pleadings to my Father in Heaven for peace and comfort. Thankfully, I had a peaceful calm assurance everything would be okay. If there ever was a time to not be calm, it was today. I am grateful for the power of prayer that undoubtedly aided in helping to stabilize Clara and myself. 

The plan was for the 3rd round of chemo to start tomorrow, but that is on hold till they can determine (if possible) what the cause of her unrest was.

On to happier things...we went home for the weekend! For the first time in 6 weeks we got to go home. After being home for about 1 1/2 hours Clara got a fever which we believe to have been caused by dehydration since she had gone without food and drink till 5 pm because of sedation (another loooong story). It was pretty devastating for all of us since we had to leave and take her to the local hospital ER. The children didn't want to be separated so they went with us while she got checked in and then went back home. Six hours later at 3am Brian, Clara and I were back home.

The rest of the weekend was in short, heavenly, for all of us. My sister took some family pictures for us and I think they are just perfect (especially for an amature). Even though my boys were such stinks during the photo shoot, I look at these pictures and  forget how agonizing it was to get them to cooperate! It sure was hard to drive away from those faces yesterday...the hope of another visit home keeps me going. Clara was at her best all weekend soaking it all in. Pure joy! I haven't seen her so happy and active in 2 months. I just kept thinking and saying over and over, "I love my life!" I really have it so good. The bumps in the road help me to see more clearly how beautiful life is.   

(tomorrow hopefully I'll know the results of all these tests she has been having)