Saturday, July 30, 2011
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.
Friday, July 29, 2011
|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
Wisdom is the principal thing; therefore get wisdom: and with all thy getting get understanding. Proverbs 4:7Since 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 . . .
Friday, July 22, 2011
|Baden making styrofoam "snow". Big mess! But, look at that happy face! Totally worth it.|
Wednesday, July 20, 2011
|During transfusion...the chocolate chip cookie was just what she needed ... for lunch :)|
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.
Sunday, July 17, 2011
Thursday, July 14, 2011
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.
Tuesday, July 12, 2011
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.
Monday, July 11, 2011
|Our Lybbert fan club, just missing Clara and I|