Dark and twisty thoughts

Only the Grey’s Anatomy fans are going to get that title.

I found the most amazing discovery! At Chick Fil A, they now carry packets of Tabasco….travel size, put in your pocket, have some in your glove compartment, always have one in your purse packets of Tabasco! I don’t particularly like Tabasco, but most of you know that it is my weapon of choice when battling sassy mouths and lies. A couple of drops on the tongue will take care of any and all attitudes problems.

Now available in handy dandy travel packets! Joy!!!

Tuesday was clinic day for Peyton and her finger poke produced GREAT results. Her ANC was at 2000, her hemoglobin was 10.5 and her platelets were over 270K!! Best numbers in over a month now. She has color in her cheeks and lips and she is back to about 90%…she’s still a little fatigued, but overall a HUGE improvement.

Today was the last day of school for my kids!!! They piled into the van singing “Summer break, no school, summer break, so COOL!”

Ok, so Rogers and Hammerstein they’re not, but they were pretty thrilled with themselves and I’m so glad we are done and can just have some lazy fun now. We got home and I fed them dinner and shoved them all back in the van with a suitcase and we headed for Daytona! Spur of the moment, no big plans, just get in the car and go…which we can do because it’s “summer break, no school, summer break, so cool!” See? It’s catchy!

We’re here with my mom and dad who we don’t get to see often enough, between their schedules and ours, the visits are far too few. So, it’s nice to be here and letting the kids enjoy these grandparents too. They are very blessed to have so much grandparent love from both sides of the family.

Here we are, crashed out at Casa de Grandparents and have a couple of days to spend at the beach and with friends. We are heading back to Brandon on Saturday because I have evening plans with a group of cancer moms. We’re going out to dinner and then off to see the “Sex and the City” movie! Amazingly enough, there were no arguments from any of the husbands, wonder why?

This morning I had the chance to go up to the hospital and visit some friends who are inpatient. It’s so long and boring being stuck in the hospital and although it isn’t much, just a quick visit from a friendly face can make the day. I know that personally. Unfortunately, I have a lot of sweet friends who are stuck in some very emotionally and physically draining situations and I wish from the bottom of my heart that there was something I could do. But this is it, I pray and I visit and that’s all I got.

Jimmy Reichert needs our prayers. He was just about to leave St. Joseph’s hospital and head over to All Children’s for his bone marrow transplant when a CT scan showed a fungal infection in his lungs. No official word on the specific fungus, but the fear is that it is Aspergillis, a fungus that was involved in the many recent deaths of our young friends. He’s lucky in that they caught it very early, not even suspecting it might be there, but a pre-transplant CT showed it and they were able to start treating it quickly. His transplant is now on hold as they figure out the best way to deal with the infection. There are so many answers uncertain right now…surgery to remove the infection or no surgery….chemo plan for the interim while waiting for the infection solution…what’s most risky for him right now. Please pray for wisdom and guidance in the hearts and hands of these doctors who carry such a heavy burden of responsibility. Pray for Jimmy and his family, they have been apart for so long, unable to live in their home because of his prolonged hospital stays and they are feeling the strain of missing each other and just wanting to be together.

Connor Hernandez is in a very critical situation. He has Aspergillis as well, and it spread, causing them to have to have to remove his port. When I saw him this morning, he looked so sad and he broke my heart because he was on a vent from surgery and you could just see that he was miserable. Besides the Aspergillis, he has a severe infection in his arm that requires some action, what action is not decided yet, but pray for the right answers to come. He is struggling to breathe and requires oxygen when not on the vent and they are going to be deciding whether or not to leave him on a vent to give his lungs and heart some recuperation time. His mom told me very honestly that every change in his condition right now is for the worse and it is all going to be dependent on how much fight and strength Connor’s body has left.

I cannot tell you how hard it is to walk in there and see these kids…Jimmy, who was in such great spirits, full of laughter and life and sass…Conner, who is fighting with every bit of tired strength he still has…and to know how WRONG WRONG WRONG this all is. How the treatments are failing, when failure is not an option. Jimmy and Conner were diagnosed at the same time 6 years ago and relapsed within just weeks of each other, and they just found out another boy who was in treatment at the same with them has relapsed as well.

It’s discouraging and it’s hard to find the purpose in it all. It’s so difficult to turn to God and say, “I know this is part of your plan, but HOW can it be? How can it be the plan for these children, any child, my child, to suffer through this? What good is coming from THIS plan?” I can’t wait for the day that I am able to ask God that question face to face, and for Him to show me the purpose that is so far from my understanding right now. I know it’s there, I just wish it was obvious to me, so that I could not be frustrated and angry and scared and discouraged.

A friend and I were talking about how it all builds and builds and then comes out in these horrible ways and I admitted that I’ve had a reoccurring dream….a nightmare really. It’s not all the time, and although it leaves me shaken, I, in some way, feel better afterwards…almost like my sleeping mind allows me to voice the fears that my waking mind refuses to let come to the surface. I dream that I’m at the funeral of one of the sweet children who has passed in the recent weeks. I’m walking up to the casket, with it’s toys and memorial pictures and loving reminders of how they were treasured…and when I get up to the casket, I look down and it’s Peyton’s little face there. It’s awful. And I am afraid that it could happen to us. I’ve told myself over and over, it won’t happen to us, each child is different, you can’t compare one to another, it won’t happen to us. But I’m sure every family who has suffered this loss has said the same thing to themselves at some point. It won’t be us. It won’t be my child. It can’t happen.

I didn’t really intend this to be so depressing and maudlin….I’m sorry. I’m sure everyone who reads this should immediately run and have a drink and watch a rerun of Friends to perk themselves up. Some days it’s just easier to face the reality than others. Those days are generally the ones where I’m able to just give it to the Lord and humble myself to realize that it’s not in my power or my right to question how He gets it done. Days like today when I come away angry and frustrated at it all, when I rant and pray impatiently, are the days I don’t have the peace.

Tomorrow morning I’m taking the kids to eat breakfast on the pier that overlooks a beautiful stretch of beach. We’re going to throw bread to the seagulls and love the day. Tomorrow will be a much better day and then I’ll be ready to take it all on again.

f.r.o.G…fully relying on God
–Anissa