SURGERY....Monday 8:30 a.m.

The Next Step

Well, I'm sure most of you have guessed by now that we didn't get the news we had hoped for on Grace's MRI. The tumor is unchanged so it seems that the chemotherapy is not working for her. Friday was, of course, not a good day and I just didn't feel like blogging more bad news. Argh. Today was tumor board meeting and the surgeons and oncologists all met today to discuss Grace's case. There were about 20 doctors in the room I am told and they basically all came to the same consensus - the tumor must come out. Given her high blood pressures, they just don't see continuing on with treatment as a viable option. I was expecting that and I guess in some way I am relieved although scared. This week they are going to get an MRA which will outline the arteries and veins. They are going to review all of her films and make a plan on how to get the tumor out. This time around hopefully they will be a little more prepared for all of the blood loss that will likely occur. They are alerting the blood bank now. She will likely have to have several transfusions. They said all of the pediatric surgeons will be there - there are 3 of them along with a transplant surgeon. So it's a pretty big deal for such a tiny little person. Please pray for Grace! We don't know when the surgery will take place but it is likely going to be after Thanksgiving sometime next week. We'll report more when we know. Maybe we can bring our little girl home soon.

Hopefully this will cure her, but maybe it will only just buy her time. I don't really know. I'm sure it could go either way. You never imagine petitioning with Heavenly Father to just give you a little more time with your child. I think we could be happy though even if it just gave us time to know her.

As far as scheduling goes, we're planning on being in Portland this weekend, and then most likely I will be staying through the week.

Grace's favorite position

That doesn't apply....

to me. Those are words I used to say. You never really think much about cancer or Ronald McDonald or the strength required by those who face it, until you find yourself in that situation and then the world changes. Perspective shifts, and suddenly you are inspired and can relate and commiserate with those facing it. I find strength from a little girl about my Twinkle Toe's age who is facing cancer. Her name just happens to be Grace too. She is a special little girl. And sweet, sweet Lucy. She is just one of the cutest things ever and she is so lucky to have such an amazingly strong family. Today I ran into some of our friends here at the Ronald McDonald house who have been here for I don't how long. Maybe a year? Their son has a very rare brain tumor that doesn't carry a very positive prognosis and they have gotten some bad news today. His tumor is coming back. I ran into his Dad and was very heartbroken to hear that. On top of all that, Ronald McDonald is full so they can't get in. When I was at the Temple today, Brian's name was running through my head so I added him to the prayer roll. I am praying he gets a miracle too. I asked Brian's Mom how she did it, meaning how she handled everything so well. She told me that she didn't think about the future anymore. She just takes it one day at a time. I can totally relate to that. Being up here, going day to day, it's hard to think about the small details, the ins and outs, the plans. Life becomes very simple. And we take it one day at a time and it's impossible to make plans. So if I'm a little flaky, you know why! We'll know more on Friday and take things from there.

Week 6 Chemotherapy

So today I got up super early and actually went to the Temple. A friend of mine had suggested it to me awhile back and at the time, there was no way I could even get myself going in the morning much less make it to the Temple. But I have gotten myself to a better place now and so I decided since I was here, I better take advantage. It was a nice way to start the day and helped me remember the eternal perspective of things.

So this morning, quite early in fact, Grace had her 6th round of chemotherapy. I got to hold her the whole time and cuddle her. It only took about 15-30 minutes this time. She just gets the one round of vincristine and it's not so bad.

She gained 2 ounces yesterday. She weighs 10 lbs 2.3 oz.

So the plan for this week is that they want to re-image her on Friday, with another MRI and see where her tumor is. That's the so-called plan, but it's not for sure yet. The NICU docs need to pow-wow with the Hemoc docs, and nothing ever gets done fast around here. SO - Friday may or may not be a "big day for Gracie", as Albert likes to say. We'll see. So I am moving nowhere fast.

The good news is that my Mom is coming back! She's actually flying to Portland this Friday and she is going to stay through Christmas. Can you believe it? I can't. Actually, we have a complete stranger to thank for that. A lady we have never even met is flying my mom out here to be with us. Just another amazing blessing in this ordeal that we are so grateful for. So we are super excited to have her help and to steal her away for the holidays, which will be a bright spot for us all. So my angel friends will be off duty for awhile, although I may have to see if they will help me from time to time, just so we don't drive Nana completely insane. A month with my kids is likely to drive her over the edge, and we want her to want to come back and see us rather than running back to TN screaming.

Update 11/17

Thought I would update real quick before I forget. Grace is completely off the IV blood pressure medication. They are still adjusting her oral meds. The eye doctors came today and examined her and said her eyes were A-OKAY! What a relief. I was a little worried she was going to end up blind or something. It's never good when you're baby has a higher blood pressure than you, so that is always a concern. But all looks good. And I forgot to mention before that the MRI of her head is good too, no hemorhaging or bleeding, so THAT is good too. Her bottom is all healed up now. I think it's a good sign because her abdomen is a lot less distended now and so she is not constantly pooping anymore, so I think that has given her bottom a chance to heal. And her abdomen is not as tight and both sides aren't sticking out anymore. The right side stuck out from the tumor and the left side stuck out because all of her intestines were displaced, but that is SO much better now.

Shonda Rocks.........Grace at 2 Months

Blogroll 11/16

Grace is doing well. We are back into our hospital routine now. It took me about a day to adjust from taking care of a 2 and 4 year old to now back to the newborn schedule - constantly feeding, changing, rocking, etc. Grace is a lot of work. These nurses are spoiling her rotten. I have one nurse who loves her to , the night nurse, and she holds her all night long AND puts her on her tummy. See, when you have a constant heart and respiratory monitor on your chest in the hospital, you're allowed to do that. But they're like, you can't let her sleep on her belly when she goes home. So I'm thinking, okay, so they're training her to sleep on her belly and want to be held all night long. Oh boy. I'm in for it.

Grace gained 2 ounces yesterday. She is a champ. She eats so good and she seems to be taking all of her meds. They have her weaned off of her IV medication for the most part and they have her all on orals, so it's a little of a challenge to make sure she doesn't spit them up and swallows them well and so forth. One of her pressure meds I don't think tastes particularly well. I think her belly looks a ton better than when I was here just a week ago. To me, I think it is way better, but who knows. We won't know how the chemo is working until we get another MRI. On a positive note, our LDS doctor, Doug, is going the extra mile for Grace. He has been talking to some of the chief surgeons here and they are in turn talking with some specialists who are going to check out her films and see if there is anyone who might attempt a surgery on her given the difficulties with the tumor and her vessels. We will see but at least he has people talking.

So I got here on Saturday and Ronald MacDonald was all full. That is the first time that has ever happened. That was a sad day. I stayed up here on the unit but it was not fun lugging all my junk all over the hospital, waking up, not showering, etc. But thanks to Marnae's parents, I knew I wouldn't have to go through another night of that. Thank you! But, as it turned out, someone checked out of Ronald MacDonald today and yeah, I'm in!

Today my friend Shonda came and took some more pictures of Grace. She is so nice to do that. I know she is so busy but she took time out of her Sunday to come and take pictures for me. I know she stays booked up for months out and she has a life and family too, so I super thank her for doing that and I know she really wanted to do it given Grace's situation and the circumstances. I can't thank her enough. Shonda really is one of those people that is beautiful both on the inside and the out. But for now, you will just have to look at my pictures of Grace. She does look a little different than even a week ago.

Conversation 11/14

Me: "OKay guys, Mommy has to go back and be with Gracie for a few days, but I'll be back really soon."

Sweet Boy: "Mom I want you to be done with Gwacie in a few days."

Me: "Okay hon, I'll be back in a few days."

BlogRoll 11/13

Well, I'll soon be on the road again headed to see Gracie. I have been counting the days in my head until I can get back there. It's getting harder and harder to be away now that she is so big and alert. The day after I left the nurses said she was real fussy.

This week we have gotten a lot of really nice cards in the mail. One of these days I will get around to sending some thank you notes to all the nice people supporting us. I keep thinking if I wait, maybe one day we will have some better news to share.

Twinkle Toes got her preschool pictures done. For some reason she has something purple on her lips. No idea what that is. I am so grateful to my angel friends who just keep taking her to preschool when I am not around. I totally just leave it up to them about what to do with that and they just take care of it! Whew.

Grace got her 5th round of chemo this past Wednesday. The word today is that she tolerated it very well. She is a little anemic so they are supplementing her with iron. The feeding tube is gone! She is no longer needing it right now. But I'm sure it will be back at some point. This week she will be 2 MONTHS old. I realized that Grace & I have been mimicking each other all along. She is my little mini-me. When I was pregnant, my belly kept swelling up from excess amniotic fluid. Little did I know that her belly was swelling up too from the tumor. Then, I had to have a C-section so I have an abdominal scar and she had to have surgery so she has a scar too, although hers is much bigger than mine. On days when her blood pressure sky rockets from the tumor, boy you should see mine! My head about explodes when I see her monitors go up to 140/90! Is this ever going to end?

We have had several adoptive families who just take us in and treat us like family. We appreciate them SO much since we feel a little homeless sometimes being far from the Hubby's family and even farther from my own family. One of our very special friends sent us an email that I have been reading over and over because it has given me a lot of strength. So I am going to share but leave their names off. We have had so many supportive emails, cards, and comments and we do appreciate them all. It buoys me up every time I get one.

"You are still in our prayers and your names are put in the temple every time we go.
We are grateful that you both and Gracie keep hanging on with hope and faith.
Jodie, I really admire your strength and I have pondered a lot about what you are going through.
I have asked myself, why them?
Well, not everyone is as strong as you are. I know that our Heavenly Father will bless you through all this tribulation and that in the future you will look back and think of all the things He taught you through this trial. Please know that He is aware of you and your little one, but He knows best of the blessings that will come to you if you endure well.

I have thought of little Gracie and what a valiant spirit she must be to be fighting through all this ever since she was born. We do not know, but maybe she said, "Father, let me go through this ("Send me") instead of someone else. I know my parents will pull through no matter what."
Maybe if she could talk to you her words would be Ether's last words when he said, "Whether the Lord will that I be translated, or that I suffer the will of the Lord in the flesh, it mattereth not, if so be that I am saved in the kingdom of God." She knows where her heart is. She knows she is sealed to you and that she belongs to an eternal family, that is what really matters.

Thank you for sharing your thoughts and your faith with us. We have enjoyed the pictures of your little ones. They are so sweet!

Jodie, I am so glad you listened to your mom's advice and learned how to knit a hat for Gracie. She is so beautiful. I know she can feel your love.

We love you guys. Hang in there and please, please let us know if there is anything we can do for you."

Gracie Girl

Week 4 Chemotherapy

Just an update for today....that Grace is tolerating her 4th week of chemotherapy very well. The nurses said that she slept very well last night. I was a little worried because of the stronger drug that has been added on. It took about 3-4 hours last night just to administer all the drugs. They had to super hydrate her in order to protect the bladder from the one "hit me with your best shot" drug.

By the time this is all done, she will probably be sleeping all the way through the night, so I will probably miss out on all those midnight feedings.

Today, Grace seems her normal self. No real nausea that I can tell. She is a champion nurser, as the doctors are saying. Today she has just nursed and not had to have anything down the tube. So that is a relief that she is doing so well. We have cuddled a lot today and she seems very content to eat and then fall asleep in my arms. I kiss her a lot now. Before I was a little too afraid to get too close, but that is wearing off and we are able to snuggle more despite all the mass of spaghetti tubes attached to her. The one strong drug may compromise her immune system but we won't know for a week or so. Her nurse and I may give her a bath later on today.

Several of the nurses here have sort of endeared themselves to Grace. So that is nice that when I am gone they are giving her extra love. And the doctors too. The oncologists were teasing me that they sit around and discuss Grace quite a lot, so she is not forgotten even though they are at Doernbecher and she is one building over at OHSU in the NICU. It is so unusual for all of them to see a baby on chemotherapy - they all seem to be rooting hard for her.

Lullabyes

There is a volunteer that comes in to the NICU and plays the harp. She came in the other day and played the most beautiful, melodic music I have ever heard. It was so soothing and peaceful. She lulled Grace into quite a deep sleep. The picture of Grace in the pink outfit is right before she went in for her MRI so she was a little out of it on the morphine. The other picture is of her in her swing - yes, she has a swing too, can you believe it?

One in a Million

A million comes to mind a lot these days - like the million dollars the insurance company will pay before this is all over. Well, hopefully not but we'll see.

Being a scientist by training, I tend to like numbers, charts, graphs, statistics. With Caleb, I charted his growth at home and made detailed Excel graphs, always being bothered by the fact that he never even got on a "normal" growth chart for the typical baby. So, like the true scientist I am, I have searched the literature and read just about every article out there on mesoblastic nephroma.

So just to give you an idea of what we are dealing with, apparently, 8 in a MILLION children are born with congenital mesoblastic nephroma. There's nothing inherently genetic about it. It just happens - a random mutation. The majority of those 8 are the "classic" type. A much, much smaller percentage of the 8 will have the "atypical" or cellular variety of mesoblastic nephroma which is considered a more aggressive tumor, often recurs, and carries a poorer prognosis. So as you may have guessed, my little Gracie is quite the high achiever already - being quite possibly that ONE in a million being born with the cellular type of tumor. This explains why when I went online to find a support group for those with mesoblastic nephroma, there were no members in the group.

The chance of getting struck by lightning is also ~ ONE in a million or something like that. So I find it quite interesting that both my sister and I have had these one-in-a-million experiences - her losing a child to lightning.

Well, anyways, the results are in from today's MRI. The tumor is pretty much the same. It has shrunk just slightly but not enough to make it amenable to surgery. So tomorrow will be another chemo day for Grace. So, we have to look on the bright side of things. The bright side of things is that the tumor is not spreading. It looks to be fairly benign and slow growing and that is most likely the reason why it is not responding dramatically to the drugs. It has shrunk just a bit and to the oncologists, they say that it looks more organized, less "crazy" if you will, to use a very nonscientific term. So I think this is a good sign. They say these tumors often die from the center first and then react on the outside later and when they reorganize themselves, or become more compact so to say, they can often be pulled away more easily.

So the plan, I like to call it the "hit me with your best shot" plan - is that Grace will get the same drugs - vincristine and Actinomycin (in slightly higher doses) along with a new drug, cyclophosphamide. I like to call that one the "hit me with your best shot" drug. It will probably make her a little sicker, but only for a day or two.

Other good news - Grace is looking well. Her blood pressures seem to be under control, I think. She is stable, feeding well.

Patience, it's a virtue right? I guess they did say it might take 6-8 weeks. Let's hope it's 6. Let's hope dramatic changes are soon to come.

Not a Big Day for Gracie

So, just letting everyone know that they probably aren't going to get the MRI done today. Just scheduling difficulties with the sedation team so it is probably going to be tomorrow and we may not get the results back right away. Gracie is looking good though. This morning she took almost her full feeding breastfeeding. She prefers that over the bottle so it looks like I am on duty while I am here. She is a good eater, I think because she has such chubby cheeks, which is such an odd thing to see for me. She is quite strong too. She can almost hold her head up on her own a little and she pulled her feeding tube out twice already this morning. I put Nana's little bunny in her crib for this week and she has been staring at it as you can see. Maybe it will be her good luck bunny.

11/2/08

A Poem

Okay, I did not write this poem. I actually found it on someone else's blog with a similar but different story, but it really struck a cord with me...

Twas the night that you joined us...all eyes were on earth.
Awaiting with joy for a most special birth.
The angel's stood ready...for each need and care,
But all of them knew... that the Lord would be there,
And I labored on... and daddy was scared,
We waited...and wondered... and hoped we'd prepared.
We knew you were special...but so very sick,
Yet hope had grown in me... with every kick.
And soon it was time...into this world you came,
I heard a soft cry... then I called out your name....
And God held your hands...while the angels stood by,
Since I could not hold you...they hushed your soft cries.
One small angel looked to the father and smiled,
"Can you truly teach hope... through such a small child"?
"An infant so helpless...a baby so new...
"Oh please tell me Lord...is this what you will do"?
God looked from the angel...to the baby's sweet face,
"Through her my young charge... they will learn about grace".
"I penned this child's journey...quite a long time ago,
"And through her great courage...such true love will grow".
"Every hair on her head has been numbered you see.."
"It's my hope that through her... they will learn to see me.
"Oh my little one with a special heart..." "Great love will see you through.."
"See look that is your family..""They've been waiting for you.."
"I send you to their waiting arms...for a time we'll be apart.."
"But I'll always be with you...for I live within your heart.
And so we held you in our arms...And thanked our Lord above..
In you...we see the miracle,of His undying love.
So when it's Christmas morning, And I watch my children play,
I'll need no great reminders, For I see my gifts each day.

Room 201

I'm back in Portland now for the week. So my angel friends are back on duty this week if they can, taking care of my kiddos and keeping my husband in line (j/k). I got to spend all afternoon with Grace. The nurses have moved her back into a crib instead of a warmer and she has a fun little mobile that plays music and she really likes to watch it. They also put a CD player in her crib so she can rock out to lullabyes. After not having seen her for a week and a half my first impression was that she looks really good! Better than when I was here last. She is growing of course. She is about 9 pounds, 10 ounces. They have her on full breast milk now and they are giving it to her bolus instead of continuously. They give her what she wants from a bottle and then what she doesn't take goes down her nose through the feeding tube, so she gets it whether she wants it or not. Finally, I have a child that eats. So today she was wide awake when I got there. She just listened and listened as Mommy told her all about what has been going on and also about Mackenzie and Caleb on Halloween and how Caleb told me to "go bwing Gwacie home." Then she gave me the biggest smile. Then, I got to breastfeed her and after we finally got all her burps out, she laid on Mommy and was out like a light. The skin on her bottom is broken up a bit, we're not sure if it's from chemo poops or just the fact that she poops a lot and sometimes I don't think the nurses get to the diaper changes as fast as I would like, so her bottom is still very red and sore with some blisters. They keep putting barrier creme on but it doesn't seem to help that much I'm afraid.

I brought my cooler full of milk in, sorry if that is TMI (too much information). I have always doubted that I ever have enough milk, but after filling my freezer, our garage freezer, and my neighbor's freezer full of milk(sorry Dan), it is clear that that is not the problem. My kids just really don't like to eat.

Anyhoo, the MRI is scheduled for Monday, to see how the chemo is working. The doctors don't seem to think it is working based on the girth of her abdomen, so we are probably looking at more weeks of chemo (but I am still praying for a miracle and hoping to be back at the Maple Leaf (Doernbecher lingo for surgery) later this week.

Here's Grace staring at her mobile....

BTW, Room 201 is my room # not Grace's. She really doesn't have her own room yet. I think she is still too young for that.