A day full of God's blessings

People are always asking me for all the details…well, if you are not one of those people, you may just want to skim over this next post and go striaght to the bottom for her MRI results because God so richly blessed us yesterday, I can’t help but give you all the details of the day!

We decided, last minute, to stay home instead of driving down and staying in a hotel the night before. (We had to be there around 6:45am.) We did this mainly because Claudia’s (HORRIBLE) sleeping schedule has been for her to wake up around 4 am, all geared up and ready to conquer the world! We figured that we might as well try to get to bed extra early and be driving instead of laying in the hotel room when she woke up. And at this point, staying in hotels the night before an MRI always seems to make us all especially “anxious” as well as making it hard to relax because Claudia thinks we need to explore the place all night; so whenever possible, we avoid it. Christian also had his last two softball games of the season the night before (at 8 and 9 PM) and really wanted to play, so that just seemed to settle it. Needless to say, it didn’t make getting up at 4 in the morning any easier, but Claudia did really well! Just like an alarm clock, by 4 she was ready to go. I was worried that she would relentlessly beg for something to eat (she couldn’t have anything past midnight), but we gave her her own big bottle of apple juice, neat straw and all (she could have liquid until 5 am) and she loved it! She thought is was pretty "cool" (this is one of her newest words/terms!) and never asked once for something to eat! Well, actually she begged to go to McDonald’s every time we passed one, but for some reason (wink wink), they were all closed! Is it wrong to lie like that? Anyway, the trip went very well and we actually made it in record time.

We opted to have these procedures done at St.Vincent's Hospital instead of Clarion North Hospital mainly because this involved surgery, not just an MRI (and for many other, various reasons that if you really want to know, I’d be more than happy to share with you) and I am sooooo glad we did. Our cancer clinic was originally out of St. Vincent's Hospital but recently moved to Clarion in order to be a part/branch of Riley Children’s Hospital. We love our dr. and decided to transfer along with them, but we definitely miss St. Vincent’s and this visit reminded us why. We were worried about the communication of the results between the two hospitals because they are in separate networks but St. Vincent's handled it perfectly in so many ways. (I’ll explain more a little later.)

As I expressed in an earlier post, because her surgery was first and parents aren’t allowed in the operating room, I was so worried about how she would handle being put to sleep with the gas mask…and alone. Every time we talked with her this past week about removing her port, she increasingly expressed her worry that we would leave her. This method (gas mask) is how she will have to be put to sleep from now on and I really didn’t want it to be a traumatic experience. In pre-op, we discussed all this with the nurses and basically begged them to, at least, let one of us be with her until she was asleep. It didn’t look promising but they kept saying they would see what they could do. Well, God answered our prayers big and they ended up letting me “suit up” and actually be with her in the operating room. I sang to her as she fell asleep in my arms. She never shed a single tear. Of course, I was fighting back my own tears the entire time and completely lost it the minute I kissed her good-bye!

The surgery went really well. They were able to use the same incision they used to insert the port. And just a little side note or, “God thing”….I know it sounds weird, but we really wanted to have her port. She was sooooo proud of it and it took awhile to convince her that it was a good thing to take it out! Until recently, she would even cry every time we mentioned it! To help with this, and not thinking it would be a problem, we began talking with her about wandering what her port looked like and that it would be fun to play with. (I know, this may sound gross or weird to you, but until you have a sick child you probably can’t understand everything that goes into trying to help them feel comfortable with all the awful procedures they have to endure. Consequently, one of her favorite things to play is pretending that she is putting in a port. She has a few of the real thing (with the needles broken off), so she pretends to put it in, inject the solution with a real, but empty syringe, close the tube off, etc. It's quite amusing, but after having her blood drawn at least once a week for almost 2 years, she has the routine down almost perfect. Every single one of her dolls has a band-aid (which is one of her absolute favorite gifts to receive…especially the fun decorative ones!) on the port area from pretending this. As I sit here and explain all of this, I realize how sad and somewhat pathetic it all is. And yet, this is her life. She knows no other. She is one, very brave girl and I am so so proud of her.) Anyway, when we mentioned wanting the port to the nurses and surgeon, they acted as though it would be impossible…this would violate every infectious disease regulation in the book! Well, our surgeon was this very skilled, old, by-the-book kind of man that had a “hard” outer shell but a big soft heart. And as we were walking down to the OR, I overheard him tell his assistant, “We’re just going to throw it away anyway…and no one needs to know about it…” So in our post-op consult, he walked in with a big smile and her port in his hand! When you’re hanging on to the end of the stress rope for dear life, its amazing how the little things can mean so much! When we showed it to her later, I don’t think she completely understood what it was, but she will someday…and it will be another emotional reminder of the miracle that she is.

And one more little “God thing”…There is a big, beautiful player-grand-piano in the surgical waiting area that I had always seen but never heard play. If fact, I didn’t think it did play. But, the entire time we waited for her to come through surgery, it was playing beautifully arranged hymns. God so perfectly orchestrated this for such an incredibly stressful time. I felt His presence and comfort so strong. Even Christian (who wouldn’t normally “appreciate” this type of music) commented how peaceful it made him feel and how much it calmed his nerves.

We had to get a copy of the MRI on CD for our dr. to view before we were able to get the results and we were worried this may take awhile. The last time we needed this, there was a lot of confusion and it took several hours to get the copy in hand. Not this time. An MRI tech hand-delivered it to us in the waiting room before Claudia had even reached the recovery room! Amazing! Christian immediately ran it over to our dr. at the other hospital so they would have the results before we even arrived at Clarion for her post-op consult/results after recovery.

We have found that she wakes up best from the anesthesia the sooner we are able to be with her…sometimes we can even avoid tears. As a result, we asked that they come get us as soon as possible post-op. Often times, the nurses don’t want parents in the way and will wait to come get us until she is more awake. This time, they definitely got us ASAP! In fact, she hadn’t even been there 2 min.’s before I got back there! However, she woke up pretty hard this time. She was obviously in pain from her incision and was visibly “irritated” with her IV in her little arm, but all things considered, did so well. (In fact, she did so well, the nurse gave her TWO picks from the treasure chest on our way out!!!!) Furthermore, we obviously had a very good anesthesiologist because he got a good vein on his very first try…no bruises on every limb, like we are used to! Again, PRAISE GOD!

And the best part of the day…HER TUMOR IS NOT GROWING!!!! Our dr. said we had one of the best radiologists from St. Vincent’s to read her MRI. This MRI marks the two year mark for no growth of the tumor!

Thank you Lord for answering our many prayers! This day was clearly full of your Hands at work. May you receive ALL glory, honor and credit for these results and all the so-called “coincidences” of the day! Thank you for reminding me that you are in and even care about the little things. My heart overflows with joy, thanksgiving and love to you. May your name be praised! Amen.

So, she’ll continue to go back every 12 weeks for MRI’s. Her next one is scheduled for the end of September. If they continue to look good, she will eventually go for scans every four months. Because of the nature of this type of tumor, our dr. said she probably won’t begin to feel “comfortable” with the no growth results until it has been 20 yrs. (or so). I told her to just wait…its going to disappear! This is my prayer and I BELIEVE He is more than able!

Thank you so much for your faithful prayer on our behalf. God does hear each prayer and clearly chose to answer all (or at least most :) )of them yesterday! PRAISE HIM!

And as I promised, a few pic’s from yesterday. (Also, this post got a little long…and its 3 am, Claudia will be up in less than an hour… so check back in few days or so and I’ll update with LOTS of pictures on everything else going on in our lives!)

Waiting for surgery and showing us her port....one last time.

Still waiting. She doesn't like the hospital outfits they give her and this time in particular, she complained that they were "so scratchy" so we just left the top off and wrapped her up in her beloved blankie! Also, Aunt Kimmie & Cousin NaeNae gave her this little, talking piggie for the surgery and she loved it. Thanks Kim & Lynae!

Her pain today seems to be pretty minimal. She has only complained a few times but whenever we pick her up she says "be careful with me, my port's owie." She has also said to me about 20 times today, "Look mommy, my port's all gone!"

Thanks again to you all. You just don't know how much your faithful prayers mean to us...I hope this post may give you a little idea. We love and appreciate you so much.