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.

Its that time again...

I just can’t believe it’s this time again...MRI time, that is. I’m so horrible about updating, and at this point, probably have no more readers left…in which I could totally understand why!!

OK…before I get any further, I’m just going to be completely honest here…I’ve started this post over about 10 times for fear that I was “venting” too much or coming across as too negative, but sometimes I think its ok to just “be real.” Actually, I think we always need to be real, but maybe its just that our vulnerability often reveals issues of the heart that we don’t always want “exposed”…and yet, the only way God can truly continue to mold our hearts is to be honest, right? God has blessed our little family beyond words and I by ALL MEANS DO NOT want to come across as ungrateful for all that He has done and IS DOING in our lives. And even despite the many challenges and testing of our faith, God continues to reveal his amazing love for us. I just don’t understand why God gives us so many chances. I’m so thankful for a God that never gives up on us…I’m so underserving. God is good - all the time!

Sooooo, anyway…where do I start?!? I truly have had full intentions of updating this long ago, but we lost our camera…which in turn has most of the pictures I want to share. I’m absolutely sick about it. We’ve looked everywhere, and I think I’m in denial because I’ve put off writing this post in hopes it would show up. It hasn’t. I’m to the point now that I don’t even care about the actual camera (that we’ve only had 4 mos.), I just so desperately want all the pictures. Who knows, tonight I found a pair of Claudia’s pants neatly tucked away in the pantry with all the food. I don’t remember doing it, but know I’m clearly the one who did because I had them ready to put on her the other night and (thought) I just laid them down to go to the bathroom. When I was done, I couldn’t find them. (No, Claudia didn’t do it…she could never have reached the spot they were!) I thought I was just losing my mind at the time, actually, I obviously am! Can I blame this one on pregnancy? Or stress? Or both?!

With each passing day, my heart grows a bit more heavy …This next Tuesday, June 26th, Claudia will have another MRI. At this point, she will continue to have them every 12 weeks. (Lord, will I ever get used to this? Will I ever get rid of this pit in my stomach?) She will also undergo surgery to remove her port-a-cath. This will involve opening her up in the same place they inserted it and then cutting it away from the muscle that it is attached to. Since she’s had it inserted, we’ve tried to make it a big deal…that she’s really special for having one in hopes that she would let the dr.’s and nurses “mess” with it more easily, and believe me, it worked. She is VERY proud of it. In fact, when we first started putting the idea in her head that the dr. was going to take it out, she likes it so much she would cry. Now when we talk about it she just gets real serious and says, “and it won’t hurt, right, Mommy?” I don’t ever go into detail but it breaks my heart because I know that it will. They originally had these procedures (MRI and port removal surgery) scheduled for different days, but since they both require anesthesia, we begged them to do both at the same time. It seems to becoming more traumatic each time she’s put to sleep because she’s starting to understand what’s going on…and she HATES it. She’s had all this done way too many times and she knows the routine…all the pre-op stuff. So the tears start earlier and earlier each time. And on Tuesday, its only going to get a lot worse. Up until now, she’s had her port, so we always arrive with it accessed and they can put her to sleep through it while in our arms in the MRI room. However, now they’re going to have to start putting her to sleep with the gas mask and putting IV's in her little arms (which BTW, she has VERY bad veins and her arms and legs look like a pin cushion after trying to get a vein to work). They’ve only had to use this method (gas mask) 3 other times and every time it took several people to hold her down as she screamed hysterically until the drugs kicked in. And on top of it all, they won’t do the MRI first so we won’t be able to be with her when they put her to sleep with the mask. One of the absolute worst memories I have of her first surgery is seeing her little face as the dr. walked away with her. I still have nightmares about it. Ok, I really need to stop talking about this because I’m getting myself all worked up. I’m sure I am making this worse in my head than it actually will be on her, but this is the emotional mess I put myself through every time we get closer to an MRI. The only comfort is in knowing that God is completely in control and never leaves her…even after I have to hand her over. In fact, I think God has been reminding me of this even through Claudia...lately she’s been waking up in the middle of the night, crying real hard with bad dreams (I think they call them night tremors) and it seems to be a reoccurring dream she's having because she always talks about not liking/being afraid of the lions. When she wakes up crying, we pray and tell her that Jesus is always with her and that she can talk/pray to him whenever she is scared. Well, the past few days after telling me she’s “scared of the lions” she says, “ but we pray to Jesus and he help me!” Another cute story…At bedtime after our prayer time, she always asks me where Jesus is. I try my best to explain that He’s in Heaven (and sometimes go into the whole thing about how He can also live in our hearts…..etc, etc.) And lately, she’s been asking me randomly throughout (almost every) day if she can have Jesus over. Its sooo cute and precious. Anyway, I’m asking you all once again to please pray for her upcoming MRI and surgery. In the midst of everything going on right now (or ever, for that matter), I can’t even fathom what a bad report would mean…so I’m just refusing to even go down that road. I’m hoping, praying and BELIEVING in this miracle. HE IS ABLE!

In other news, life has been pretty busy and stressful around here lately. For those of you who may not know, we’re building a new house. I know, what were we thinking?!?! We broke ground in November and were supposed to be in this past March. It is now June and they’re telling us at least August. As you can see, everything hasn’t exactly gone, um, smooth. I’m still not quite sure why I ever agreed to this endeavor, and those that know me, know I can’t make a decision to save my life…and every decision I do make, I second guess. I’ll stand in the grocery store for 10 min.’s trying to decide which flavor of yogurt to get…now, imagine me trying to make 500 decisions (many being permanent) r/e a house! It has not been pretty. We’ve been in Lowe’s so many times, I’m convinced they have a cart reserved for us with our name on it. I’m VERY thankful for this opportunity, but I will also be VERY glad when its over. So, on top of trying to make all these decisions (pure torture!), getting our house ready to sell (also, pure torture! :) ), I’m in the process of unpacking all the baby stuff I had so neatly packed away, all ready for the new house. My official due date is July 28th, but I have an ultrasound July 2nd to determine exactly how I will deliver. I won’t go into details, but we’re going to have to try something a little different with this one…Claudia was 9 lbs. 10 oz., and let’s just say, left a permanent mark on my body. Along with my recent surgery, my dr. is talking more and more like this one may arrive a little early via c-section! We’ll see! Nine ultrasounds later, we’re still unable to tell what sex we’re having! We’ve been putting off so much, in hopes we could make things a little easier by knowing what we’re having. As a result, we have SO much to do before this one arrives. I’m thinking we should probably accept the fact that we may just have to be surprised and go ahead and get going…at least start talking about names and important things like that!!!

Its been so long since I’ve updated, I feel like I could go on forever telling you cute stories about how my little girl is growing up…how God is working in our lives…and how we’re reminded of His goodness, almost, on a daily basis. In fact, I’ve got a really neat story about our last appt. with the dr. that did Claudia’s surgery, but I think I’ll save that for the next post…it will go perfectly with the good report/update I’m going to give!!!

And for the few readers I may have left, here’s some pic’s Christian managed to pull before we lost our camera…

Easter 2007

Claudia with the Dawson gang (on Easter). Getting all the kids to look AND smile would be a modern miracle, so here's the best we could do...if only you could see the 10 adults making faces and noises on the other side!
Dying eggs. Her excitement (and attention span) wore off after the first egg! Oh well, I had fun dying them, atleast! And Easter this year was so cold we couldn't get outside for the annual egg hunt so Aunt Nelle hid them inside for all the kids.

Mother's Day 2007

I am so truly blessed. Period.

Daddy and Claudia doing one of her absolute FAVORITE things. I only wish you could see the more recent pictures on the camera we can't find. :(

Memorial Day 2007

Just a few of the gang for the big picnic we had.

If you only knew how much Claudia loves frogs (or toads)! The only thing is, she won't hold them unless she is wearing gloves - definitley ALL girl!

More pictures to come next post...I promise! Thanks again for your many prayers, encouragement and support. We love you all and will keep you updated.