Showing posts with label St Jude. Show all posts
Showing posts with label St Jude. Show all posts

Friday, July 31, 2009

Seperation Anxiety

Nursing Adam has allowed me to be apart from him for limited amounts of time. However, since he has become mobile, his patience to sit and nurse is almost nonexistent. It's as if he's afraid something extremely important might happen in the 5 minutes he would be eating. Plus, he's keenly aware that in the time it takes to nurse, he could have shoveled in half a pizza, so why bother? Sure, part of me is sad to say goodbye, but let's face it, Adam hasn't looked like a baby since he was 2 months old, so I've come to terms with the fact that he is growing up. But what is he exactly? A toddler...maybe. But he can't walk. So maybe he's a "special" toddler. Adam Bomb can pound 8 0z in 3-5 minutes. I'm thinking of getting him one of the hats with a can on each side and a straw. You know what I'm talking about.
Anyways, point being, I haven't been many places by myself in ages. Thanks to a wise decision made 8 years ago, I have a wonderful husband who took some time off work so I could go to Memphis alone. In actuality Lindsey isn't suppose to be around germy kids and since Adam has discovered to joys of splashing in the toilet and eating leftover cheerios from under his high chair, it was more of a necessity that I keep the kids away from my immunosurpressed sister.

I spent a little over 48 glorious hours doing everything and nothing with Lindsey. Mom had driven to Nashville to rendezvous with Dad, which meant the "kids" where home alone. So, what do you do when your parents are out of town?
1)Knit. We went down to the craft room to work on Adam's letters for his room and some sweet little ladies were teaching how to knit. In the end they were disappointed with my progress, but I'd been up since 4:30 am, driven 5 hours and was starving. My scarf is still a work in progress. 2) Attend an ice cream social were we met up with the Ivies(our old Memphis neighbors who's daughter is now a patient at St Jude and was on the transplant floor the same time as Linds).
3) Drive over to Ronald McDonald for two dinners (always tastes better when someone else cooks, doesn't it?).

4)Find a cute scrapbooking store for paper to complete Adam's letters.
5) Steal some sewing projects from my sisters house since she was out of town. We stuck around and found a cute spot for a rug she didn't know where to put. Hope you like it Mel! Oh and I owe you an Oreo pudding snack pack. Thanks, it was delicious.

6) Watch Bend it Like Beckham and countless episodes of House Hunters International (note to self, don't buy an apartment in Paris unless you have over $700K to spend)

7) Skipbo. Man am I rusty. I didn't win a single round until just before I left.
8) Love Lindsey's undivided attention. When you're with Lindsey, you know your in the presence of greatness and I like to brag that I'm related to her, because to me that means I might have a chance to having a little bit of that greatness in me.

Tuesday, June 23, 2009

Jail Break

She finally lost it and busted out.

Oh who are we kidding? This is Lindsey we are talking about; the girl who has no poker face. Yesterday the docs surprised Lindsey by granting her a pass to the outside world. She had asked for permission to go outside at night, just to walk around, but they went one step above and told her to get out and never come back. So, after more than an month in room #7 of the bone marrow floor, Lindsey finally spent the night in her own bed at the Target House; her home away from home. She'll still be under the same strict rules enforced while on the transplant floor but no more nurses checking in at all hours of the night. But best of all, this means she is progressing on the road to recovery...and surprising docs along the way.

Now the plan is to remain virus and infection free and wait for those all too important B and T cells to come in, thus ending the low bacteria diet and providing her with an immune system.

Hangin' at the Hosptial

*I wrote this post while in Memphis, but didn't finish it until today. We are LOVING our new home and will post pics when the boxes are unpacked.


We've been taking it pretty easy this week. Loads of trying to keep Lindsey from reaching her maximum boredom level. Loads of Skip Bo. Loads of pressuring Lindsey to eat the highest caloric foods we can find to ward off TPN.

My bone marrow should start popping up on labs around day 21.


Mom handed me two cards the other day. One contained tear jerking thank you notes from Mom, Dad, and Lindsey. The other was a beautiful cream envelope with a green boarder and pineapple. You know what that means...

WILLIAM & SONOMA! AHHH!
It was spent before it touched my fingers. My dream 14 cup cuisianrt food processor. Just in time to make gallons of pesto to freeze for winter and enjoy some homemade hummus with grilled pita bread this summer. My biggest challenge will be conquering pie crust.

Least you feel too sorry for me, let me tell you about some of the happenings around St Jude.
Monday = facial and visit from some crazy grown men dressed like green bugs and a queen.It's good to be KingDid I mention Adam is deep into his separation anxiety phase?
Tuesday = Bayou dinner provided (gumbo, jambalaya, banana pudding).
Wednesday = manicure and William & Sonoma dinner and carnival (karaoke, craft, and face painting). Thursday = Bingo with ALSAC. They are too good to us around here. I know it's time to go home when Shannon's starting to complain about the free stuff.

"MMMMOOOOMMMM I wanted the Holiday classic Barbie, no the Forest Princess one."
But she loves it now.

Saturday...unlimited carousel rides.
Monday...Splash Pad and catch up with old friends.
This is how we roll
(When this post was written, the rolling had just begun. Now he's crawling and I don't think it will be too long before he starts walking. Where did my baby go? Or as some of you are thinking, " Who ATE my baby?)
Tuesday...Back to The Meadows
Surreal. For those of you who don't know, we lived at the Meadows for all 3 years of law school. When we left, we never looked back (Sorry, don't miss the 40 year old aspiring singer who lived below us and would "practice" at 1:30 am or his partially deaf wife who would blare the TV until our walls shook all while she smoked 10 packs of cigarettes and filled our apartment with smoke. Good times) But we do miss the friends in our Bartlett 2 ward. Jayden and Shannon were born days apart and seem to share a special bond that only Nov 2004 babies can.
The rest of the time not spent at the hospital or playing around Memphis was spent in the Target House (half the time we were treating Shannon's constipation...again, Good Times).
Adam learned to open and unload cabinets...
While Shannon tried to convince me she was overworked by moping from floor from the couch while watching TV (although I give her props for multi tasking. Now, if she had only moped more than a 2 sq ft area...)
Spoiled! But who am I to talk as I look at my beautiful nails whilst I type this post.

Sunday, May 31, 2009

Bone Marrow Buddies

Lindsey has been on the bone marrow transplant floor for 1 week now. The rules are strictly obeyed on this floor, which means no little ones. Communication is done in a fish bowl that reminds me of methods used during prison visitations. Shannon is not a big fan of being left out, especially when it comes to Lindsey.

But the objective is to keep people out, unlike prison where we want them to stay put. I'm sure Lindsey has felt like bustin' out on more than one occasion. This one week has been jam packed with variety as well as boredom, all at the same time. Her first 2 days were high dose chemo. She went out with a bang though and will never have to get chemo again! She already says that even looking at someone walking the halls with their IV pole makes her sick. Tuesday through Friday was total body irradiation to wipe out the remainder of her bone marrow. These were her first and last radiation treatments, which means she got a small NO MO RADIATION celebration.
On the other side of the spectrum...the boredom. The same 4 walls every hour of every day. We have become masters at skip bo, but the many buses parked across the street that never leave are starting to annoy Lindsey. On the other hand, she has fellow inmate to transplant and LDS member, Emma, to drag her out of her room to the playroom for a bit of fresh air (even though you are require to wear a filtering mask when you leave your room)Or Lindsey might beat the boredom with a rousing game of I SPY.But one of the hardest changes about being under the care of the bone marrow team was saying good bye to the guidance of Dr Pui, a world renowned oncologist whose care over the past 11 years has gotten Lindsey into remission 3 times despite her bodies rebellion. He still stops in 3 times a week to keep the transplant docs on their toes (because EVERYONE is scared of Ching-hon) and visit his favorite patient. We miss you Dr Pui!



May 29, 2009
What an emotional day. The night before the transplant Steve gave me a blessing that made me breakdown after being so robotic about this whole situation. I felt the weight of the significance of the last 11 years. How hard we had fought to avoid what was about to happen, yet how at peace we were with this decision. How Lindsey is now almost the exact age I was when I first received the phone call from my parents telling me Lindsey's never ending virus was in fact leukemia. So many ups and downs; so many times thinking we were done; so many miracles. My shoulders were heavy as I felt as though we were finishing one book and immediately starting a new one with an unknown storyline. Yet here we were, staring down a new giant with new hopes and and new fears. Did we have the energy to face the new guy?

Answer: HECK YEAH!


I woke up at 4 am on May 29th; was to Methodist University Hospital by 5 am and doing this by 6 am.

"Yes, Dad...we're at the hospital. Go back to bed."


The first of many sticks, but I was too excited to feel any pain.

I had only one moment of heart racing, sudden rush of heat, fear. It came when I was being wheeled to the OR suite, watching the rectangular lights above whirling past me. I turned to see the blaring lights of an OR, you know, the huge circular ones they move around to focus on the site. That's when it hit me that I was actually having surgery. But then I remember the conversations of surrounding patients in the pre-op room...one lady screaming for a pastor, another saying it was her birthday, and another asking what the biopsy revealed. Sadly enough, this was calming as I realized that only good could come out of this experience.


The Results = 800 cc of precious bone marrowThe actual transplant. Kinda looks like a blood transfustion, except with heart monitors and epi taped to the window.Why I had to stay an extra few hours (too much drainage)A Perfect 10! 10 sticks to get the max amount of bone marrow. Either my right side was more giving or the surgeon on the right worked a bit more quickly than his partner on the left. Lindsey's holding up like a pro but the next couple weeks are critical. We especially need prayers that the graft will take and that her B and T cells will start producing like wild fire. Thank you for all your support.

Thursday, May 21, 2009

Memphis in May

Memphis in May is a world wide BBQ championship, but for me it equals transplant time.

Lindsey is in remission and we're both getting our testing to prepare for the big event. The kids and I arrived in Memphis Tuesday night. After meeting with the transplant surgeon and almost donating blood(a story for another time), my week is done.

Lindsey will be admitted to the transplant floor Saturday, get chemo for a few days, radiation for a few days, then on Friday I'll go in bright and early for my donation and she'll be transfused later that day. They asked me to stay put until then, which means spending lots of time with the newest Memphisians (the Pitchers) and revisiting all of our favorite former spots.

We ask for your prayers during this crazy and critical time.

Wednesday, April 1, 2009

One more time around

I appreciate all the calls and voices of concern on behalf of my youngest sister Lindsey. For those of you who haven't had the privilege of meeting Lindsey, she's amazing.


At age 9 she was first diagnosed with leukemia. At age 14 she relapsed. This past week she entered St Jude hospital for her 3rd, and final relapse. Once we get this kid into remissions, she's going straight to bone marrow transplant. While the shock and sadness hasn't worn off, Lindsey's attitude has rallied us all. We can't wait to get in, beat this thing, and be done forever!


We went to Memphis as soon as we could and thought you'd like to see some pics of how Lindsey is doing. Also, Lindsey has a blog so you can track her progress and leave her words of encouragement.


http://lindseyatstjude.blogspot.com/


Here's her new address


Target House 1
Lindsey Gruwell
Room 200
1811 Poplar Ave
Memphis, TN 38104

Lindsey's the best Aunt ever, even when she getting chemo



I made Lindsey take this pic as an ode to Twilight. The girl received blood products for 3 days straight. Hopefully she will transition from this "newborn" state soon and start draining other forms of nutrients.

Bracelet Buddies!

With my medical record number and bracelet, I'm now and official St Jude patient. I'm so honored and humbled to be her bone marrow donor.

Shannon was able to play with an old Memphis buddy, who is now fighting her own battle with neuroblastoma. We can't wait to see them again on our next visit. Keep up the good work Emma (and Kerie).

St Jude is such an amazing place. It's one of the few places that you feel the spirit. Everything is 100% geared towards the kids. They have these cute wagons for them to ride in, which was a big help not to have to carry around 25 pounds of pure Adam love.


Check out this cafeteria. I didn't even get a shot of the ice cream parlor. I'll have save that for the next visit.


Adam ate enough mac and cheese and baked beans to last a lifetime. I'm going through BBQ withdrawals. Thank goodness we're heading back in 9 days.