I'm pretty worn out from the past couple of days, so I'm just going to put a quick update up. Clinic went well yesterday, though it did take several hours. Benjamin really hasn't shown very many side effects, which is good. :) Benjamin's white blood count did drop this week, but the Hem/Onc nurse said it wasn't anything to be concerned about. We have now completed round 5 of 6 treatments this cycle. (Yay!!) I can't tell you how excited we are to finish up our last course of chemo next week!
Please continue to pray! You have no idea how much your support means to our family!!
My goodness, what a week! I'm sorry I haven't posted, it's quite chaotic over here.
First things, first. Benjamin update. This weeks chemo went really well! He didn't seem to react nearly as badly this go around...we didn't have any diarrhea, headaches, or the like. I will say that as the treatments have progressed, Benjamin has been getting weaker each time. I suppose that is to be expected, but it's hard to watch. On the bright side, we only have 2 more chemo treatments to go in order to finish out our first 6 week installment. Yay! I was able to get an appointment with the Opth., and she said that as far as they can tell, the reason Benjamin can't close his eyelid is because they removed such a large mass that they essentially did a major lid lift (my words). She also thinks that as the scar is forming on his lid, it is also pulling it up. The hope is that over time, the muscles will relax and the lid will go down on its own. In the meantime, they recommended using over the counter drops to prevent his eye from drying out.
As for the rest of the family, it has been a busy, busy week! Grandma and Grandpa were running around like chickens with their heads cut off, trying to make sure they wrapped up all the myriad of last minute projects before they left. I can't begin to tell you what a blessing it was to have them here with us this past month!! Dad has fixed just about everything in my house, including, but not limited to: my car's AC, the icemaker on the refrigerator, and my house AC. It's really true....Grandpa CAN fix anything except a broken heart! And Mom...wow, what a trooper she's been! Even while she was struggling through the Cold of Death, Mom spent her time building up the girls by playing with them, reading to them, taking them shopping (woohooo!!!) and generally spoiling them rotten! I'm sure it will take weeks to reprogram them, but heck, that's why God gave us Grandparents!! (On that note, I am sooooo looking forward to the day I become a Grandma!!) Both girls now have a small large army of dolls and animals that Grandma made for them on the Cricut. I can't begin to tell you the hours of fun they have had designing and playing with Grandma's creations! Both of them are now firmly convinced that they need a Cricut for Christmas! Snicker...yet another electronic item for the Tech Weenie to conquer! ;)
There really aren't enough words in our English language to describe the range of emotions that the Knotts Clan has gone through this past month. There have been some very dark days where it seemed like a swirling vortex had sucked the world from beneath our feet. There were days when life was the way it should be...a blessing from God filled with wonder and beauty. But through everything that has happened, we have had a constant security blanket of family and church family wrapped firmly around us, holding us together (sometimes literally!)...loving and reassuring...and sometimes kicking us in the pants when we needed it! :) I have done a lot of thinking in the quiet hours (roughly between 1 and 2 am in this household!!) and I have come to the conclusion that one of God's greatest blessings to humans is the family...both biological and church. Oh sure, there are times in any relationship that you find yourselves having a, shall we say, less than loving attitude toward each other. Even that very tension is a sign of the closeness of the relationship. People very rarely get frustrated with total strangers (unless you're driving down the freeway....but I digress!) because there are no expectations...no relationship. This life that God has given us can be difficult at times, and trying to navigate the potholes of life is downright difficult, if not impossible, without a support group! In his infinite wisdom, God set up a natural support system...the family. Like it or not, unless you are in a very unique situation, God has given you a family. God has specially designed your family to give you love, support and guidance. Naturally, as humans, we sometimes corrupt his gifts, but at the core, families are an amazing units...true blessings from God! But sometimes things are so big that it takes more than a biological family to tend to. Enter the church family. If you don't have a church family, then I urge you to find one! Note that I did not advice you to find a church, but a church family. There is a difference, and I have found that is can be worth an extra 30 minutes drive to find a family.
Looking back, I see that I have gotten a bit long winded, but I feel that it was important to write it all down. Somethings just need to be said. Besides, I've got a captive audience! ;)
This weeks chemo treatments were a little harder than last week. About an hour after his treatment, Benjamin apparently had a very bad headache. He was better once I got him home, but he still had diarrhea and loss of appetite that night. Then, to top it all off, he started developing a nasty little yeast infection in his diaper region last night. Our wonderful nurse B. at the clinic called in a cream for him last night, and it appears to be wiping out the infection. Yay!! B. also called in an oral version of the antifungal/yeast medicine as a preventative, just to make sure that Benjamin doesn't develop thrush. It looks like Benjamin's GI system is back in working order today, so I'm hoping that the rest of the week will be better. :)
I wrote Benjamin a letter today...I don't know why, I just seemed important to write down.
Dear Benjamin,
My dear, sweet, wonderful little man! I am so sorry that you had to be saddled with such a tremendous burden so early in your little life! In so many ways, it is cosmically unfair that you have to be tested and poked and prodded in a time in your life when you should be running and exploring and learning all about the world you live in. Believe me when I say that if I knew of any other way to make you healthy I would do it in a heartbeat! If I could, I would take this burden from you, but I can't. And so I have to watch as people cause you pain in order to save your life. I know you don't understand what is going on. I'm sorry sweet little man!
Oh Benjamin, you are so spectacular! Time after time I have had endless nurses and chemo Moms tell me how amazed they are at the way you react to your treatments. You are such a trooper! You hardley ever cry, and you always bounce back so quickly! You are such a sweet little boy that I know it is hard for the nurses to give you your treatments. The only thing that makes it easier for us is knowing that we are doing the best we can to help you live a long, healthy life. Just remember that when things get hard for you, it's ok to cry! Mommy is always ready to grab you up in my arms and cuddle and love you! Day or night, I am here for you.
My son, I have absolutely no doubt that God has something amazing in mind for you! I don't exactly understand all of His plans right now or why this is happening. But I know that He is good and that He loves you very much! Have faith in Him and you will be blessed!
It is my prayer that you will be completely healed while you are still young and that you will not remember any of this. If not, I would hope that you remember all the love that was poured out on you by your family, your church, and even total strangers!
With All of My Heart,
Mom
I've been a little distracted lately, and I just discovered tonight that September is Histiocytosis Awareness month. Head on over to www.histio.org to see what you can do to raise awareness for this "orphan disease". Beep....end of message. :)
Since it was a holiday and Autumn was off of school, we decided to get out there and have some fun today! Mom and I went down to EdVenture and had a royally good time! It was really neat to see the boy having such a great time at the kitchen making food for his Grandma! And the girls and I had a blast crawling around the middle of Ed. It was funny seeing Benjamin buzzing from one activity to the next, not even necessarily waiting for us to follow him (which was a little bit of an issue when we lost him once!!). I'm sorry that this post is not as verbious as I usually make them, but we have chemo again tomorrow, and I need to get some rest. In the meantime, please enjoy a sample of the pictures from today. :)
My apologies for the long pause in updates. Things have been going VERY well, and we have been enjoying ourselves down here. It is soooo nice having Mom and Dad home to help me get things done! What a blessing!!
Chemo started last Wednesday, and for the most part, things have been smooth sailing. We had a bit of a hang up waiting for Benjamin's meds to come in (4 hour wait with a toddler...not fun...not fun!) to the Hem/Onc clinic, but the chemo itself was a really simple process. Since he had his needle left in, it was literally a in and out kind of process. The only thing Benjamin fussed about was when they took off the tape that was holding it down. :) Benjamin also started prednisone last week, and we had a little snaffu when they gave us tablets instead of syrup, but after that, things have been going fairly smoothly. We have been having some behavioral issues lately (big time temper tantrum last night...general crankiness), but so far, it hasn't been horrible yet. We go back to Hem/Onc for his chemo again on Tuesday. I am hoping that they are able to see us promptly, and that the chemo goes as well as it did last week.
I don't think I can say it enough. Please, please keep praying. The prayers are definitely making a difference! :)
Phew...another set of chaotic days!! Due to a scheduling conflict, Benjamin's port had to be scheduled for Tuesday instead of Monday. What I didn't know was that they would keep Benjamin all day in the hospital. So, I got to surgery and was told that we were being admitted. Sigh...had to do some pretty major schedule shuffling for the girls, but thanks to God, my friend K. was there! Oh,and did I mention that my cell phone had died?!! Again,I am sooo thankful that K. was there, because I literaly couldn't have done it without her!! (K. and D. and the rest of my church...YOU ROCK OUT LOUD!!!!)
Sooo...once we got that stuff out of the way, things went much smoother. Benjamin's port placement went very well, and the AWESOME staff here at the CMC treated us like we were family! (BTW...big shout out to ALL of the nursing staff here at CMC. You guys are so fantastic at loving and caring for your patients!! Special hugs to K. and N. In the OR. Your loving words made everything so much easier!! And to Benjamin's girlfriends/nurses on the 5th floor...I love you ladies!!)
We're supposed to start chemo today, which I am a little anxious about. I know it will be ok, it's just the first time. I also get to meet B., who I've been told can answer a lot of my questions. I'm really looking forward to that!!
Mom and Dad get here today too! I know they're going to be exhausted from the drive, but I'm sooo glad to have them here!!!
There is so much more I could write, but at the risk of developing "Blackberry thumb", I should probably wrap it up.
Please keep the prayers flowing...more than anything they are keeping things flowing in the right direction!!!
