Rough week

Sorry it has been so long since my last post. Gracie has had a rough week. I hate seeing her little spirit down and in pain. It just breaks my heart.

She has had very bad stomach pains this week. She will sometimes drop on the floor and grab her tummy and tell me her stomach hurts. Nothing could break a mommy's heart more especially when you cant do anything but hug her through it. She also cant sleep because of these pains. She wakes up many times during the night and her naps are always interupted. She has also stopped eating again the last two days. I hate to see her loose so much weight already. I dont know the number yet...but I can see it very clearly.

Her hair also started falling out on Saturday. She would lay with us on the couch and after we would get up we would notice all of her beautiful blonde hair all over us. She has noticed the hair falling out and it hasn't seemed to bother her. So of course, we just continue on and not make a big fuss over it until Mark and I are alone. It's just that outward sign that Gracie is actually going through all of this.

Tomorrow is round 3 of Chemo for Gracie. I really hope this week is easier for her.

On a positive note Paul and I had a "special day" out on Saturday he wanted to go see Shrek and go get ice cream. Of course mommy said yes because it was his day. He has been so wonderful through all of this. He is such a wonderful big brother!

Two down Four to go before scan.

Please continue prayers that tumors are shrinking!

Gracie did really well today. She was sooo brave. She even assisted the nurse today. She told the nurse to clean her "tubie" then to put in the water then to clean it again. It was so cute. She was so fascinated by it all. She did really well with the inserting of her "tubie" but when it came time to remove it of course she had a mini melt down. Gracie slept all the way home from from her appointment. When we got home she wanted a Fruit Roll-up...of course, mommy said yes.

Gracie only received the Vincristine today so I am hoping this will be an easier week for her. We have one more easy week and then she will receive both of her chemo meds on the following appointment.

What a wonderful evening.

Last night the whole family and I went out and supported Uncle Matt shaving his head in support of childrens cancer research. Last night was about celebrating love and life. Matt more than doubled his original fundraising goal!! What a wonderful thing he did for children like Gracie.

Gracie did pretty well last night. Of course, she did start getting tired but we did hang out until after Uncle Matt shaved off his locks! LOL. We couldn't miss that. We did get some wonderful pictures last night but I am unable to get my darn card reader to work this morning to upload. Going to try and figure all of this out today.

Gracie has been doing pretty well. I think she is having awful jaw pains which is causing her to not eat as well as she would like. Everything she eats now we celebrate! This morning she wanted a doughnut....so guess what, she got it!

Tomorrow we head back in for more chemo.....4 more rounds after tomorrow then we go in for more scans. Please everyone pray that they are shrinking!!!!

Thanks everyone again for all the support and love! Oh and Tamara thank you so much for Gracie's Baby Alive!! She was so tickled!

Ups and downs

Gracie vomited for the first time today. It was so sad because this is the first time she has EVER done that. Afterwards she fought me soooo hard not to take her anti nausea medicine. It is really funny because a minute before that she had her blood sugar checked and a shot for her hypoglycemia....but wouldn't touch that fruity flavored medicine. Hopefully she will understand soon that the medicine does make her feel better.

Gracie does really well after the initial morning nausea. She has been happy and playing. She isn't eating as much as she used to and we are really struggling with the fluids. But through this all her blood sugar is still doing well.

Keep up the prayers!

Uncle Matt needs help...

He is going to shave his head in support of children like Gracie on Saturday. It is for St Baldrick's. They raise for money for childrens cancers. If you want to support Uncle Matts efforts on Saturday please go to

http://www.stbaldricks.org/participants/mypage/participantid/408994

Crazy few days

Sorry it has been so long since I have updated...it has been really crazy here.

On Friday we met with Dr. Dome and our surgeon. Both were absolutely amazing and. It is so nice to be compforted by their amazing energy for helping Gracie. We decided to have a portecath inserted for Gracies chemotherapy. The procedure was set for Monday.

On Sunday we went to hang out with Matt. It was really nice to have the support around us Sunday. Mark and I were really having a tough time. We knew that this was the last day before all of the craziness began for Gracie. We drove to DC Childrens on Sunday night for Gracie to be admitted. The wanted to keep an eye on Gracies blood sugar during the fasting she would need for the surgery the following morning.

Gracie was an absolute hit on the Oncology floor. Everyone was just amazed by her energy. She was sooo happy to play in the toy room that was across from our room....how convenient.

We started our day very early on Monday morning. They came and got Gracie around 7 and too her to surgery. It was only a 45 minute procedure. During that time Mark and I went to go and eat breakfast and just really release all of the emotions we had been experiencing. Mark is my rock and just the most amazing husband. He was so strong for Gracie and I. He kept me positive and happy through all of this.

When we were finally reunited with Gracie she was still out from the surgery. When she finally woke up I was very surprised that she did so well. She just wanted mommy and daddy to hold her. We sat in recovery for quite some time.

When we finally got back to her room it was around 11:30. Gracie was ready to play already. What a little trooper. So daddy and I got her some toys from the play room and played with her in her room.

Dr. Dome came around around 12:30 and we had our family meeting on the care of Gracie. It was soooo much information. Our plan for now is to start her on very mild forms of Chemo. After 6 weeks they will reevaluate with a ct and check progress. If her tumors have shrunk considerably they may continue for another 6 weeks...if minimal shrinking or no shrinking they will remove after 6 weeks. We still know very little about her tumors and we really wont until they get in surgery and remove them.

An interesting piece of information that was clarified. The Dr.s kept telling us the 2 tumors were on her left kidney (the smaller one)......They are actually on her right kidney. The doctor then wanted to do an EKG for future purposes. Another form of chemo that they may use in the future could cause heart damage so they basically wanted to get a good baseline and make sure that her heart is ok. Gracie had a blast walking around the hospital. During the EKG though, Gracie was so tired, her poor little eyes kept shutting....but the pain of the scan near her port was a little painful for her. When we got back to the room they gave her some tylenol to help.

Mark and I left Gracie with her wonderful nurse for a moment after that so that we could go to the gift shop and get Gracie a balloon...she had been admiring everyone elses in the hospital. She had so much fun with her nurse. They walked the halls searching for circles on the floor. Gracie was soo excited about her balloon and didn't let it go the entire time we were there.

When we finally got back to the room, Gracie took a well deserved nap. The nurses then came around with Gracies chemo. Gracie slept through the whole thing. It was really quick. Each round took about a minute. Afterwards we had to wait around for about an hour to see how she reacted. She slept the entire time. Poor baby.

Finally at around 8:30 we got released. Gracie did wonderfully all the way home.

This morning Gracie did have a bit of nausea but we gave her the anti nausea meds and she has been doing wonderfully. She is eating and playing and happy. I just hope that things continue this well for her. She is sooo strong...I am just completely amazed by her!

Finally heard from the Oncologist today

No real new news I guess. Gracie will be undergoing 6 weeks of chemo. She will be admitted next week to have a central line inserted. She will have to be admitted the night before due to her hypoglycemia. She will need to fast...and we know that isn't an option without complete medical supervision. The following day she will undergo her first round of chemo.

We will be meeting with the surgeons and Dr. Dome tomorrow. So hopefully at that point we will have definate dates for beginning all of this.

Thank you everyone for your thoughts and prayers. They have meant so much to my family and I.

Well, Here we go

It look as though there will be chemo before surgery. My Mother in Law contacted a few of her contacts at CHKD and they all seem to agree with the docs at DC Childrens. I have also been in contact with a few other families that have been through this and they have all said that we are in great hands at DC Childrens. So, we are going to have faith in the doctors for now. The doctors will meet tomorrow and hopefully we will know when this all we begin by the end of the week. We know that they will want to begin Chemo as soon as possible.

I have been trying to think of ways to help Gracie when she begins Chemo and her hair starts falling out. I have thought of those really cute flowered crochet hats. I have browsed online at a few sites and they seem really cute. Anyone have any first hand experience with really good places to get them please send me an email.

My next concern with this whole process is how are we going to manage her hypoglycemia through chemo. I am going to be in constant contact with Dr. Link and hopefully we can come up with a good game plan.

I need to go to the store and get a really large notebook. I need to take really good notes on what the doctors are telling me. I haven't always been known for the best memory! I'm sure we will be flooded with info over the next week.

Wasn't expecting that?!

We finally received a call from a surgeon today. They have decided to take Gracie's information to a "Tumor Board" for review on Wednesday. What they are wanting to do is to do 6 rounds of chemo first followed by the surgery. Their reasoning for this is because she is predisposed for getting Wilms Tumors because of Beckwith Wiedemann Syndrome, so they want to make every effort to save as much of her left kidney as possible. The chances for children with BWS to get Wilms Tumors stays elevated until they are around 8.

I am very confused on how I feel about this. I have been told that the Oncologist at DC Childrens is one of the leading doctors regarding Wilm Tumors. I just have no idea what this will mean for Gracie and her hypoglycemia. Also will it really help and are we unneccesarily putting off this surgery. I really just need some time to let this all sink in.

For all that are wondering how Gracie is doing, Gracie is still a very active, funny, loving 3 year old. She still loves her kisses and cuddle time with mommy and daddy.

Monday - YUK!

Why did Monday have to get here sooo fast!! I hated seeing Mark head off to work this morning. We had such a wonderful weekend as a family.

The doctor on Friday told us that we needed to be careful with Gracie's belly. It was ok for her to have a little fall......that's what 3 year olds do....but no pushing on her belly or jumping on trampolines and things like that! But wow that made me a mess. Try telling a 3 year old to calm down. All she wanted to do is run and climb things all weekend. We just laughed at her amount of energy. It is just very ironic. This is what everybody has told me about Wilms Tumors though.

Hopefully today we will here from the Oncologist on our plan of action for this week. I also need to call Dr. Link (Gracie's Endocrinologist). We need to make sure that she is informing the surgical team and the Oncologists on Gracies issues. Its funny because Dr. Link lives right down the street from Uncle Matt. He actually went to see her yesterday and tell her what is going on with Gracie. She was really on top of things from the first mention of Wilms Tumors. She said that she knew the Oncologist at DC Childrens and that she would call him first thing in morning. She has always been so wonderful to our family and to Gracie. When Gracie was in the NICU she is the one who helped Gracie get better. I just get more and more amazed by her dedication to Gracie every day.

I really appreciate all of the kind words and prayers that have been said for Gracie. It is so wonderful to see how many friends we have all over the US that really love Gracie. We definately need continued prayers this week as there may be a possible surgery on Friday. So if you have any more left please send one up for Princess Gracie.

A day of tears

Saturday, May 8th was our day of rollercoaster emotions. I think everything just hit us like a ton of bricks today. I woke up with the Oh S*^# feeling. I just couldn't believe it was real.

It is so very hard to see my husband cry. Every time he would look at her it would bring a teat to his eye. When Mark and I felt our emotions boiling over we tried to leave the room as we didn't want Gracie to see us upset. She needs us to be strong.

Looking at Gracie right now....she's just our normal happy Gracie. Its hard to believe that something so evil is growing inside her precious body. We've also had that emotion..."its just not fair." She's been through so much....why this too.

The absolute joy to our day was when Uncle Matt and Aunt Lena and our beautiful niece and nephew came to visit. They brought so much needed happiness to our day. Most of the visit I just sat back and tried to absorb it all. I watched my husband run around the yard chasing all the kids. I almost cried then. Life is good at this moment and I have to grab that by the horns.

After everyone left....I broke down like I hadn't before. After observing just a wonderful evening......I just dont wont things to change! I want my beautiful Gracie to be healthy!!

The worst day of my life

Friday May 7th I received the call that no parents ever want to receive. Dr Robertson informed us that on the prior days ultrasound they had found 2 small tumors on my daughters left kidney. As the doctor was explaining things I couldn't hold the tears back. I just wanted to scream. I immediately called Mark. We had to try and make it to DC Childrens by 2. We knew that we were cutting it close on time, but we didn't care. We needed answers. What normally should take about an 1 1/2 to tops 2 hours took us almost 3. It was Friday afternoon and the traffic was horrible, we got lost...it was just a nightmare. We finally got there at 3. We ran up to the 2nd floor. When we got there we realized we weren't given all of the information. They had wanted us to fast her for 8 hours. But we never received that information. I could feel my blood boiling at that point. We finally spoke to a nurse and she said the reason for the fasting was so that if Gracie was moving a lot they needed the option to sedate her. They said that it was our choice if we wanted to try to do the CT. We said absolutely.

They brought out the wonderful orange drink for Gracie for the contrast. She loved it......we couldn't believe it. Then another nurse came out and put some numbing cream on her arms to help when they had to insert and IV. She had an hour to drink the orange drink. So we sat in the waiting room pacing and waiting. The girls on the other hand were really enjoying the new toys.

Finally Gracie went back to have an IV inserted. I knew this was going to go horribly. I've been through so many blood draws with her and I knew how she reacted. It took myself, two nurses and her oncologist to hold her down. She is one tough fighter. It took 2 attempts to get one in but it was finally done. The doctor finally spoke with us and explained Wilms tumors to us. He explained that if Gracie is to have a tumor that this is the one to have and that the prognosis is usually really good.

We finally made our way to the CT room. This is where I had to leave my poor Gracie. Mark stayed strong beside her. A few minutes into the testing the nurse came out to get me. Unfortunately Gracie's IV and kinked and they were unable to use it. So here we go again. As I was holding Gracie she was screaming "help me mommy." I was bawling along with her. Poor Mark was about to loose it as well. Luckily this time, they got it in quickly and proceeded with the CT scan.

After the CT we made our way back to the waiting room and waited for the Dr. He finally took us to a conference room to discuss their initial review of the scan. The Dr. said that Gracie had 2 tumors. One measuring at 2 cm and one at 4 cm. One was on the upper part of the kidney and one at the base. Upon initial review it looks as if her lungs, other kidney and blood vessels were clear. He said that they would review everything more over the weekend and hopefully come up with a game plan by the end of the weekend. He was still hoping to have her in surgery by Friday.

Mark and I were truelly still in shock as we left the Hosital. We knew that inside of us our emotions were brewing. We finally got home that night around 9. All we wanted to do was snuggle our 3 beautiful children.

Please forgive me everyone if I am slow to post or post a few days late. Sometimes I need a day or two to really get my feelings out. I really want this blog to express to everyone the long road that my family and I are about to go through. So please check back regularly as Mark and I will try our best to update often.