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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

7 Comments on “Dark and twisty thoughts”

  1. #1 Peg
    on May 28th, 2008 at 11:32 pm

    We follow your site from time to time and enjoy hearing about Peyton's progress. I am so sad to hear about the kids that you have mentioned. I don't know if it just seems like it to me but the center where your kids are treated seems to have high numbers of this fungal infection. I've never heard of that before. I wonder why the staff doesn't step back and realize what is happening and that it is a huge problem and try to correct it. I know its nothing they are doing directly, but I've never heard of that infection before where our kids are treated – it seems to be something with your location and I hope that they get to the bottom of it – soon!

    I'm glad to hear that your family is enjoying their time with their grandparents and that Petyon's counts were great. She has finally recovered from her infection and that's excellent news.

    Enjoy the week!

  2. #2 Marie
    on May 29th, 2008 at 5:33 am

    Don't apologize for the serious posts Anissa. Part of what makes your journal so special is the outrageous humor mixed with the absolute despair and horror that is cancer. I can't even begin to imagine the last few months with the losses you have suffered. When I read about Sierra all I could think was NOT ANOTHER ONE, NO! It hits you pretty hard on the other side of the computer when you haven't even met the kids, some I didn't even follow but saw you talk about so often that it still stung to hear they were gone. And to double that with the fact that you live with the possibility of it being your child…unimaginable. Looking forward to hearing about your day tomorrow, it WILL be great because you have decided it WILL be!

  3. #3 Robyn
    on May 29th, 2008 at 6:46 am

    Hey Anissa,
    I am so glad that Peyton is doing so well. It is such a scary time for all of our Tampa friends. I don't know Jimmy or Connor but they are in my prayers and thoughts. I hope you have a wonderful day with the kids and I hope to see you at Lil Tales on Tuesday.

  4. #4 Karalyn
    on May 29th, 2008 at 10:28 am

    Hugs to you Anissa.
    I hope today is a better day and you are all enjoying your vacation.

  5. #5 Angela
    on May 29th, 2008 at 1:33 pm

    Give hugs to dad and mom from us here in SC. We wish we could be there with you. Hope you enjoyed the pier, I imagined being there and hearing the waves and the "Florida Chickens". Sooo glad Peyton's counts are up, and that schools finally out. See you in June!


    p.s. We need to talk about Dad's birthday coming up.

  6. #6 Laurel
    on May 29th, 2008 at 5:22 pm

    So happy to hear how well Peyton is doing. We finally made it in to the hospital (and out) and are home. After some port drama Tuesday and again today we are all chemoed up and nauseated, so all is well (isn't that sick-that is well).
    Being in the hospital was such an eye opener. You can read about the horrible things the other families are going through and you can tuck them away in the back of your mind and keep saying that's not going to be us but when your roommate has lost a limb to cancer and you hear her throwing up…you walk down the hall and see the cribs…it just reminds you of how this is so real, so scary and so unfair. Thank you for your honest post and your fabulous blogs…I can't wait to read them.

  7. #7 Jennifer
    on May 29th, 2008 at 6:23 pm


    I follow the blog of a girl names Angie who recently lost her daughter and just a few days ago, lost her nephew. Several weeks ago she posted about the anger that surfaces sometimes and when I read your post today, I thought of her post. I went back and copy/pasted what she had to say about it. The way she worded her feelings was pretty profound and how she felt God responded to her anger really touched me. Maybe it will touch you the same way. Here is what she said:

    "He never backs down, though, and I am grateful for that love. It is the love of a Father who Himself is well-acquainted with sorrow. It is the love of a Father Who has lost His Son. He understands the ranting and the door-slamming. The emptiness that wraps around me when I think of my sweet Audrey. He knows.

    And He only has one request.

    Bring it right to me, Angie.

    Every time the anger roars in your heart. Bring it to Me.

    Every time you feel like nobody hears you. Bring it to Me.

    When you think it isn't fair. When you think it isn't true. When you can't think at all.

    Bring it to My feet, and I will make an altar from your suffering."

    Always, always, praying for you guys.