Natalie Biagi Leukemia Updates

How Natalie Touches My Heart

Thu, 17 Dec 2009 09:01:17 -0800

Hello family. This is the month that Natalie’s Leukemia Treatment ends! Can you believe it?! In ten days, on December 27, 2009, she will have reached the finish line of this grueling, life-altering “marathon.”
Before I (Rob/Daddy) “go off” and say a bunch of things I do for Natalie and how she touches my heart, let me hasten to mention the amazing love, fierce dedication, and tirelessness of my sweetheart wife Kathleen through this ordeal. Kat is the one who has given daily medications for the last 730 days or so. She has taken Natalie to the clinic, the hospital, the infusion center, and the pharmacy. And she hasn’t given up, although the temptation for a loving mother to just “unhook all the tubes and take your kid outta that darn hospital” is SO strong. She did it right, and saw it through. She’s such a hero, and I admire Kathleen for that.
But as for Natalie - I’ve got some things to say about her, too. I am wiping away tears as I write this, because I am so in love with this kid. [sniff sniff]
When she climbs up stairs or goes off curbs, I stay as close as I can - to catch her if she falls. Not that she does.
When she needs to climb into my truck, I always hurry around to help her up. I’m a little over-cautious. I don’t want her falling out. I know it’s over-protectiveness, and I’m sure I’ll go back to my “pre-Leukemia” fathering style soon enough. (more like, “Suck it up. C’mon. I love you! You can make it up there! Yeah!”) But for now, I’m over-protective of little Natta.
When I come home from work or a road trip or recording, she screams out, “Daddy!” and runs to the door to give me a hug. I figured out a way to make Natalie’s hugs last longer than the two seconds she wants to give me. I tell her, “I’m going to hug you for 10 seconds... one... two.. three... four... five” [and then Natalie rushes out with ‘6-7-8-9-10!’], which makes me cry out, “No, no, no - don’t count all fast like that!” [with a little tickling at the same time]).
Sometimes while we’re driving she’ll start to sing a sweet little song in that sweet little voice of hers. I catch a glimpse of that cute little face in my rear-view mirror, and I get all choked up. I remember when she wasn’t strong enough to sing.
Sometimes when I see the beautiful curls in her hair, I get all choked up. I remember when she had no hair at all. It was so sad to see her lose the beautiful long curls she had in the summer of 2007.
When she wants to go to the park, I almost always say yes, because she used to be too weak to go. And even so, she wasn’t allowed to touch the sand back then, because of germs. Now we run around and play in the sand and wash our hands afterward.
I scrape all the toppings, cheese and sauce off her pizza because that’s how she likes it.
When she’s lying asleep, she looks so beautiful and peaceful that I get all choked up. I remember all the times she couldn’t sleep, couldn’t get comfortable, couldn’t deal with the pain of her chemo-and-steroids treatment.
So I cry a lot. But I’m so, so glad. Life has never been sweeter for me. I love God, I love my wife. She has been such a hero to Natalie and all of us. I love my son. We play ice hockey together. I love my 11-year-old daughter. She is such a joyful spirit. And I love Natalie, and, just like the rest of my family - she doesn’t need to do a single thing. She can just sit there and I get all emotional just looking at her. Actually I’m getting “all emotional” just THINKING about her (she’s upstairs asleep at this moment). Gosh, life is precious. And so good right now. I’m so grateful. And this earthly life is “a vapor,” and is so short compared to the glorious eternity that God offers each person through his Son Jesus Christ. Oh man, to God be the glory. Thank you Father for the GIFT of emotion, and pain, and struggle, and VICTORY! I am such a better man for it all.
And thank you God for our precious little Natalie. I knew all along that she was going to be all right, live or die. I knew You weren’t going to leave her or forsake her, either way. Thank You God for who Natalie is. I can’t wait to watch her grow up. Thanks for letting me.
Now I’m all choked up again...

A Day to Celebrate!

Fri, 4 Dec 2009 15:44:40 -0800

Friday, December 4, 2009. Today is a special day!
This morning at 11AM, Natalie got her FINAL chemo-and-steroids treatment! So - she’ll be “kinda down-and-out” for about a week. FOR THE LAST TIME! Then we’ll make an appointment to get the “port-a-cath” surgically removed from her little chest, and they’ll start reducing the frequency of her visits and tests. We are getting our little Natalie back - full time, and we are thrilled!
But - a little earlier today - about an hour earlier, to be exact, I (Rob/Daddy) found out that my CML Leukemia is in cytogenetic remission. Remission! I asked my doctor, “So...should I be cautiously optimistic, or...should I celebrate, or what?” And she said (in her sweet broken-English accent, “Oh - you celebrate!”) Amen. I know how to do that!
So - if you’re into celebrating anniversaries, mark December 4th on your calendar every year. That’s the day that the God of the Universe gave the Biagi Family YET ANOTHER GIFT. A doubly-good surprise.
He is good, and we give Him all the thanks and glory.
I hope you’re doing well, and sensing God’s presence as you celebrate the mountains and deal with the valleys He allows in your path.
Rob Biagi - 12/4/2009

“Are You Gonna Have Three Eyes, Mommy?”

Sat, 15 Aug 2009 22:32:49 -0700

Monday morning, August 10, 2009. Kathleen wakes Natalie up. Here’s how the conversation goes down:
Natalie: “Where are we going?”
Mommy: “...to the clinic.”
Natalie: “How come I have to go to labs every time?”
Mom puts on the “numbing cream” (so the needle poke won’t hurt Natalie), and they head out.
Natalie: “Lulu’s clinic or the new clinic?” (Lulu is the name of the receptionist at the clinic. ‘Lulu’s clinic’ is ‘labs’ [blood draws] only, ‘the new clinic’ is chemo and procedures that require general anaesthesia [conscious sedation - that stuff is freaky, my friends. Kathleen cries every time when Natalie is going under. Ew.])
Mom: “New clinic.”
Natalie: “Am I gonna have any pokies?”
Mom: “...just to access your [port-a-cath], but you have your cream on, so you won’t feel it.”
Natalie: “Are you gonna have three eyes, Mommy? (when Natalie has a procedure that requires sedation, Mommy always has “too many facial features” when Natalie is “coming out of it.”)
Then, after the procedure, when Mommy finally has two eyes, one nose, and one mouth again - Natalie can go back home, see?! So - that’s the conversation - but - only once a month now. Sigh...
SWEET NOTE: Kathleen was giving me the details as I wrote this blog entry, and Natalie was listening to us talk.
Natalie just said to Kath, “Mom, remember how when I’m waking up at the ‘new clinic’ I say, ‘Hi mom’ [in a soft, groggy voice] and you say, ‘hiiiiiiiiii...’ [in a very quiet, sweet voice]?”
Awww - “Sweet Angel Girl” (Natalie) and her sweet Mommy have been through a LOT together since September 28, 2007. (the day Natalie was first hospitalized) Lots of wild conversations, lots of wild food cravings (which were happening again all this week as Natta was on her monthly steroid treatment with ‘Dexamethasone’), and lots of wild temper tantrums (by all of us!). But - as I’ve said before, and I’ll say again as long as God allows it - WE ARE ALL STILL HERE, and ALL STILL TOGETHER. God lives, rules, and reigns. We are victorious in Christ Jesus, our Lord! Rrrghh! We rock on! When we are weak and “at the end of our ropes,” you are praying for us, and we can tell. We thank you for that. And oh yeah - F.Y.I. #1 - I (Rob) am feeling pretty strong and good these days in my battle with my (CML) Leukemia.
And thank you once again for your gifts, cards, letters, emails, and thoughtfulness (special shout-out to Denise [see photo gallery pg. 2] a young girl who created an effort called “Journey of a Friend.” She organized friends and other families and sold handmade bracelets to raise money to help our family. She is truly a treasure and a gift to her family - and ours - and God’s! Thank you, little Denise! [and her mom DeEtte, also a cancer survivor, who was ‘with’ Denise on this “Journey...”])
And “as for the rest of ya...” (I just got back from Texas), we love ya and thank God fer ya’ll!
Keep checking www.thatROBguy.com for my brand new website, coming online around January 15, 2010! New song previews, new video and audio clips EVERY WEEK, new Children’s Worship Leader Tips every week, lots of new photos, a whole new design, easier navigation than ever, and more worship and FUN!

“I’m Natalie Biagi, and Here’s a Recap...”

Wed, 24 Jun 2009 14:23:52 -0700

Natalie Christine Biagi (also known as ‘gnat,’ ‘bug-a-boo,’ ‘Sweet Angel Girl,’ ‘sunshine,’ and ‘Honest John’ [huh?]), is now being called a 4-year-old Leukemia Survivor. (okay, maybe I’m jumping the gun with the whole “survivor” thing, but she only has 6 months left of treatment [Lord willing], so it seems like she’s on schedule to be finished with ‘most-of-this’ on December 27, 2009!)
She also has a “wild-’ol-head-of-hair” growin’ back in, don’tcha think? Crazy. We usually just leave it long and messy because we’re so glad she’s able to have ‘bed head.’
But I just spent a L-O-N-G time re-reading every word of every Blog Kathleen and I have written here since Nat’s first hospitalization on Friday, September 28, 2007. I cried and cried when I was so vividly reminded of all she’s been through. For Kathleen (Mommy), too. It’s been brutal. But, as I have oft said, “we are all still here - and still together!” (and I would even go so far as to say THRIVING nowadays...) Boo-yah!
Still, as I looked back and wept, here are some of the moments which jumped out at me (which are all unimaginable experiences, but - different memories now, somehow - maybe. I dunno...I will probably always cry when I read all the Blogs and look at the pictures that tell the story of little Natalie Biagi’s battle with Leukemia.)
________________________________________________
...On February 6, 2008 I wrote these words in the ‘Blog-a-Lee,’ “I would plead to God and say ‘little girls belong on the ‘Merry Ground’ laughing and riding, not in hospital beds!’”
Natalie would look into Kathleen’s eyes as if to say to her, “My body hurts. Why can’t you make this better, Mommy?”
On April 11, 2008 we celebrated that Natalie (then 3 years old) was “going down the stairs on her own.”
Mommy/Kathleen wrote in a Blog: “I kiss her, tell her I love her, I’m proud of her, I’m sorry and that she will get better, and dance, and [she’ll] have beautiful hair. That’s usually when she looks at me with those beautiful brown eyes and says, ‘It’s okay, mommy, God is taking care of me!’”

On the May 13, 2008 blog I wrote: “This disease has broken our hearts, strained our family relationships, and filled us with sorrow like we’ve never known, BUT WE ARE ALL STILL HERE!”
So - we all fight on. We know YOU have battles, too. No human is exempt from suffering, loss, tragedy, and heartbreak. Still - life on earth can be wonderful, fulfilling, and meaningful, and we cherish those special moments. I actually think I’m enjoying and appreciating life on earth a little more since Natalie and I got sick. Hmmm...
Most of all, and above all, we are grateful to God - He is truly our Sustainer.
All the best to you and yours...Rob Biagi 6/24/09

Dancing Dreams Come True!

Sat, 20 Jun 2009 23:08:20 -0700

I can’t believe this look on her face! (are you surprised to hear me [Dad/Rob] say that? [I always seem to be surprised about something in this Blog!]) That heavy makeup is for the stage, by the way...
I recall writing a blog about how we wish Natalie was strong enough to stand up (the heavy chemo had made her unable to stay on her feet early on in her treatment). Then she couldn’t walk for a period of time. I remember talking with Kathleen (Mommy) and saying, “Hopefully one day this will all be behind us, and she’ll be able to dance again.” And, well - here she is - on her way to her first Dance Recital!
The dance teacher put Natalie “front and center” in the group, and she did WONDERFULLY with her ballet and tap numbers. She danced to “Baby Mine” and “When I See an Elephant Fly” (from Disney’s Dumbo).
As soon as she took the stage and the lights came up, the tears streamed down my cheeks. There she was - all dressed up, with her (ever-growing) hair in a “ballet bun,” smiling and waving to us from stage. What a joy!
I flashed back to all the nights walking the corridors of Children’s Hospital pulling my sick little Angel Girl around in a wagon, because that’s the only thing that made her comfortable.
I remember how I thought this disease might destroy all of us - our relationships, our faith, our marriage...but it didn’t, it hasn’t, and it won’t. It can’t! We have Christ, and we have YOU. (a loving family who STILL prays for Natalie and us). It seems that at least once a month I see someone who says, “my [son or daughter] prays for Natalie and your family EVERY NIGHT before he goes to sleep. He never misses...”
People also ask, “How is your daughter doing, and how are you doing?” I tell them that Natalie is getting stronger and stronger, that her hair has almost grown all the way back, and that she feels good enough to be our sweet little daughter again! Then I tell them that my Leukemia is most likely in remission, too. (I have even called myself a “Leukemia Survivor” from stage at concerts before.) I still have traces of it in my bone marrow, but my medication (Gleevec) is doing its job and my ‘numbers’ are all within normal range.
So...we have indeed ‘made it’ so far, and we REJOICED and cheered and cried at little Natalie’s first Dance Recital! We love her so, SO MUCH and we are glad she is doing well.
HOW TO PRAY NOW: Thanks to God that Kathleen is feeling better and stronger and getting more sleep than she’s had in 2 years!
Help for me (Rob): I am still undergoing spinal decompression treatments for my 1.7cm herniated disc between my L4-L5 vertebrae. (it seems to be working. I am cautiously optimistic that I’ll be able to avoid back surgery). Also, the side effects of Gleevec are kinda disappointing and frustrating. Oh well...
BUT! - more than ever, I am believing that Natalie has really whooped this Leukemia thing. She takes her pills THREE AT A TIME! We play games with meds and we ‘throw them’ into her mouth for fun. Natalie looks back-to-normal (she just has a big belly and some other swelling when she takes her monthly steroids).
The Photo Gallery is a blows my mind when I look back through all of it. The photos (and Blogs) start out so tragic and emotional, then they get disturbing and graphic, then they get a little more gentle and hopeful.
But - for today - we celebrate our little dancer, Natalie. She is a wonderful dancer, and we love to watch her spin and sway.
Enjoying the peace and joy of this moment... - Rob Biagi