Holy cow... we just had an inch of hail dumped on us in less than 5 minutes. It actually was a little scary. I have a "drift" of hail a 6" deep outside my office door. I was trapped in my office and couldn't get in the house. The kids were terrified, then wondered where all the "snow" came from.
Inch of hail dumped in about 3-4 minutes with window
rattling lighting and thunder. Thrilling and scary.
I am sorry it has taken me so long to update you. Things have been tough for Abby, Brent and I, but they are improving for Abby. I love and appreciate the prayers and encouragement we receive when we are struggling and honestly I have needed your prayers this last week and now.
Unfortunately when I talk about the harder things that are happening with Abby, I get numerous emails, questions and comments about how we need to just put her on hospice and let her die. Of course the word "die" isn't used but nicer phrases like "let her go". Most are written out of genuine concern for Abby just not really understanding the whole situation and where we are at, but others were just being mean.
This is an example of one comment that we went ahead and posted. I took off any identifying info, because I believe that even though it was hard for me to read, she was just saying what she believed was best for Abby, out of concern for her:
- Okay, this just breaks my heart seeing poor Abby in that video begging to go to the beach. Awww she is too adorable! Have you ever considered taking her off all of this painful treatment and bringing her home , letting her enjoy the beach and be a happy kid for the little time she has remaining? I think that would be good for Abby. I know sometimes as parents we can be kinda selfish wanting to do anything to prolong our child's life yet when the quality of life is diminished and the child is suffering, sometimes its time to make some serious decisions and let our children be happy.
I know it is hard to read about a child who is hurting. Imagine how hard it is to hold them, care for them and watch them endure all this. We don't want Abby to suffer and we have to continually balance the potential for cure against the price of treatment.
The chemo Abby is doing now is to KEEP HER IN REMISSION. If we were to simply stop the treatments, Abby is not going to "die from cancer". Abby doesn't technically "have cancer" at this point. The chemo eradicated it, and the continued chemo is meant to give her the greatest possible chance of never getting it again.
Now, having said that, yes, Abby has been close to dying 3 or 4 times during her treatment. There was no way to foresee that, so there was no chance to even consider "not" treating her. Each time was from different compiling chemo effects.
In the end, we want our friends and family to know this: WE have seen her through every step of this. As you know, we are NOT hopeless or desperate, and in fact, we know that Abby will be quite happy waiting for us in heaven should she graduate early. If and when the time comes that we need to seriously consider "is the treatment worth the possible cure?", we will face that question and are quite able to do so. WE will know when it is time to say "enough!", and WE will know when comfort and quality time during her "last days or weeks" is more important than enduring further treatment. We do not FEAR that decision, though it would sadden us.
It hurts to have people leave comments implying or directly stating we are selfish and desperate, and will let Abby suffer any amount just so we can keep her around a little longer. I guess anyone who really knows us very well (personally, or by reading our blogs) will probably already know that... but these comments caused me a quite a bit of heartache and I wanted to write this, even though Brent's advice was to just move and on ignore it all.
The next treatment planned for Abby, is the LAST phase of chemo call "maintenance". It is usually an easier course of chemo, but it will last for 2 years, once a month clinic visit typically, daily chemo. The goal will be to keep her immune system suppressed enough to keep the cancerous white blood cells from coming back, without compromising her immune system to the point where it will be dangerous to her.
Because Abby has a history of handling chemo poorly, they are starting with lower doses and only giving her higher doses if her counts are too high, and she seems to be handling it. She will have weekly appointments until the right dose is found, then go to monthly most likely.
For the next two years Abby will receive 4 different kinds of chemo. The tougher ones will be at most once a month and the other chemo will be a daily pill. Daily chemo for 2 years sounds like a hard long road, and it is, but it will be easier than what she has done in the past. If we choose not to give it to her, then everything she went through for the last 9 months would probably be for nothing. If we stop, barring a miracle, the cancer will come back with a vengeance.
We have already let Abby go out to church and shopping, with a mask on, because her WBC (ANC 740) was adequate. She was very excited and enjoyed it. We would appreciate your prayers as we are making decisions for Abby.
We are shooting for a more "normal" family life, while still remembering that Abby needs to be protected from germs. It will take several months to find the exact doses that are best for Abby. Once we do that, she will have more freedom.
Abby should be able to do many more fun things, once her current wounds heal. Even though she is home, we are still administering round-the-clock antibiotics and morphine. Normally, a kid in her shape would still be hospitalized, but since we know how, we were able to bring her home and do her care and nursing at home.
(And by the way, for those two or three really nasty comments about how Brent doesn't help me, uses our blog as his own ego trip, thinks he's "god" and that we adopted Sami to use her as a slave to care for Abby.... go find another blog to read. We, and our blog friends, have no use for you here. Brent is the hardest working person I know, and cares for our entire family relentlessly, doing more than his share of house work, kids, work, ministry and helping others. Everyone that knows him, know this about him. And for those hand full of people who don't like Brent "giving his intolerant religious views" on our family blog, you can either ignore them, or join the others who need to move on. Brent has been teaching, ministering, guiding, mentoring and discipling people his whole life. It's who he is. It's an integral part of our family and relationship. To say it is an "ego trip" for him is senseless and hateful. It is an act of service that Brent freely gives his time and energy for when he could be using that time and energy out making money or pursuing leisure.)
Today, Abby is still healing. The wound on her abdomen is still red and has an open area in the middle. It is much better than it was, but it still needs to heal. We are almost finished with the IV antibiotics, but have been warned she may need another round of them. We are willing and ready of course, but Brent and I would love not to have to get up all hours of the night.
Abby's pain is pretty well controlled at this point. She is getting her energy and spunk back. Brent and I are really, really tired, but little Miss is recovering quickly and hopefully we'll get some sleep soon. Kids are amazing, aren't they?
Thank you so much for all of your prayers and encouragement. Thank you also for loving Abby enough to be concerned about her and pray for her.
In the future Brent will be moderating the comments and questions. He is able to read and delete, without giving rude comments a second thought. I love him for shielding me from comments that are written by people who say hateful things for sport. Other comments on harder subjects, but written out of caring, we will talk about and pray over before deciding how/if to respond.
Well I had to add a little to Michelle's comments. Just to many of my own thoughts to keep them quiet. For you heartless people who accused Michelle of exploiting our children, adopting Sami so we could have a "slave", and implying that we "use" our children for personal gain and labor... GO AWAY.
No really... go away. And if you think you are "getting to us" because we wrote these comments, think again. We are just letting our blog friends know you are out there in case you wander off to their blog to harass them. We'll take your harrassment first, so they can ignore you when you visit them.
I have set up approval/moderation systems on the lists, comments, questions and other reader submitted information on our blogs. From now on, your nasty comments will never make it past me. Michelle won't see them, and they will never get on the blog. They don't bother me... so don't bother wasting your time. Delete, delete, delete will be the only response a nasty comment, question or list submission will ever get from now.
Now, for our true friends on this blog, we WELCOME genuine, loving, respectful disagreement, questions and even criticism. We always want to grow, and if we make a mistake we HOPE you'll kindly tell us. If you disagree, we hope you'll tell us why, because we may be misinformed or ignorant. We WANT to learn. We really sincerely want to know why people disagree. Mature people learn MUCH by discussing disagreements. If we receive your criticism or disagreement and we still end up disagreeing, then guess what? We disagree. Big deal. We disagree. How earth-shattering... we don't question your sincerity or motivations... and hopefully you won't question ours. We just disagree. Big stinkin' deal... if we agree on everything, all the time, then I say we don't have much of REAL connection anyway. If you genuinely want to discuss a disagreement, include a name and email, even if you send it to me privately. Anonymous disagreements/criticisms will be ignored.
I plan for this to be the last post about nasty, cruel, hateful comments because they will never make it past me from now on. In reality... IT IS WASTE OF TIME AND ENERGY. Out of the hundreds of thousands of visitors we get each month, four or five are hateful jerks, another half dozen are rude and leave gutless, ugly, comments, and only 3-4 more leave any sort of genuinely negative and always anonymous responses. So why waste time on them?
If I receive a genuine criticism or correction that is accurate and needs to be heeded, I'll be the first one publicly to admit it. Being teachable and correctable is a sign of maturity, not weakness. I have no problem admitting when I'm wrong, or was ignorant about some facts or information.
Whew... glad that's over with. Someone leave us a nasty comment for wasting your time talking about our nasty comments.
The many faces of Little Miss Abby.