Sono Checkup

Just an update on our Angel Bug...She is getting so big and growing up so fast!! She has been rolling over for about a month and will be crawling before you know it...we've reached the scooting stage.
      Well she went for her 3rd sono checkup and the results came back has slightly shrinking!!! :) The adrenal mass measured at 1.4 x 2.9 x 2.7 compared to 1.9 x 2.6 x 3.2 on the prior examination. It was a slight change but we will take anything in that direction!! We have complete faith and believe that the tumor will continue to shrink. Our strong faith in the Lord and all the prayers is what is helping Reagan fight her Neuroblastoma. Her next checkup which is June 27th at 11:45 is the one that is going to be pretty tough. She will be having another MRI where she will have to be completely sedated and can not eat 4 hours prior to the procedure. This will give the doctors a more detailed image and exact measurements of the mass. We thank everyone again for the prayers and ask that you keep up is your thoughts on June 27th. We will update that day with how things went and what the results will be. Thanks to everyone for following her story!!

April 4th Sono

Sorry it has taken us a week to get back with everyone. It has been a very busy week!! Grandma Freels was called home on April 1st and we went to Arkansas this weekend for her memorial. It was very sad since she never got to see Reagan. They came here for Christmas but left right before Reagan was born.
       We did have a great week in the fact that Reagan's results came back again....GREAT!! The previous scan showed the mass measuring 3.33 cm by 3.19 cm by 2.19 cm. This most recent scan showed the massat 3.16 cm by 2.56 cm by 1.89 cm. The report stated that there was a slight decrease in size of right adrenal mass. No new abnormality noted involving the adrenal glands or adjacent abdominal viscera. It also stated that the visualized portions of the liver and spleen are normal.
    I will have to say Blake has been a big trooper the past 2 times. He has had to go by himself and has been at the hospital for at least 4 hours. I can't thank GOD enough for such an awesome husband and a great father to our daughter. I did have him is it really necessary to do the MRI and put her under since the scan did show a slight decrease. Dr. Granger said they like to do at least 1 more during  the year to get a better picture of the abdomen just to make sure nothing else is goingon. We did end up rescheduling it though to the beginning of June. So on May 5th she will just have another sono and not the MRI. Thank you again for all the wonderful support and concerns you have all shown to us. The support and prayers have done wonders for us. We will definitely keep you updated on her progress. Next time we promise it won't take us as long to get it posted!!

Neuroblastoma 5k

Yesterday Blake and I attended the 4th annual neuroblastoma 5k. We formed the team, Team Princess Reagan, and we had such a wonderful turn out. It was so great to have so many friends and family there to support Reagan's fight against neuroblastoma. It is such a great feeling for both of us to know we are not alone on this difficult journey. Our team alone helped raise over $1,800 for the cure to help increase awareness and important research funding to help fund the cure for neuroblastoma. We want to thank everyone again who joined us that day for the walk along with everyone that donated in honor of our team!!! Blake and I definitely plan on making this a family tradition and can't wait to share this experience again with everyone.
      Tomorrow is a big day for Reagan. This is her second sono since the big day that she had all her tests done. Tomorrow will really tell us what direction the tumor is going-- growing or regressing. We had an amazing prayer with Pastor Rick on Saturday and we know that we will be blessed with amazing news. We believe that our Heavenly Father is truly our rock through all of this and he is standing by us every second. We will give an update tomorrow on the news we receive. We want to thank everyone again for your continued prayers; we could not be going through this without them.  

Neuroblastoma 5K-April 2nd

Well we wanted to update everyone to say that Reagan is still doing really good!I started back to work 2 weeks ago and Reagan has been staying at Nan's (blake's mom). She has definitely been getting bigger and has been a lot of fun to play with. We can't believe she is almost 3 months old....they grow up too fast!!
    We wanted to let everyone know that we did form a team to run/walk the 5k Neuroblastoma run in Fort Worth that is on April 2nd at 8:30 am. We would love to have anyone join us that would like to participate. All the proceeds go to Cook Children's for Neuroblastoma research. If you would like to register go to http://www.nbwalk.org/. Click register now and click register as an individual. Then select as an individual for a team and then make a username and password. Then once you have done that select how many participants and the team which is Team Princess Reagan. It is $25 for adults and $15 for children. Thanks again for all the prayers and support. We look forward to the run and of course Reagan will be participating as well and  wearing her "I fight like a girl" shirt!!

MD Anderson Visit

Blake and I just got back from Houston after visiting with MD Anderson for a 3rd opinion. Even though we got an opinion from St. Jude, we felt since we were given the opportunity to go down to MD Anderson, we should go. Our appointment was at 8:00 am which started off with registration. Upon arrival we were very astonished by how enormous the facility was---it was pretty much a city within a city! When we got to the 7th floor we were greeted by very nice and personable personnel. Sitting in the waiting room really opened our eyes on how fortunate and blessed we really were to receivethe test results we did. There were several very sick children in there with their parents that made us realize how fragile life is. While sitting in the waiting room an outpatient specialist that is ahead of the child life program there introduced herself and said if there is anything we need let her know and here is a pamplet about the child life program. We definitely felt very welcomed!
     When we got called back to the room we were introduced to her clinic nurse that was assigned to her. She said how excited she was to be working with us and took Reagan around to all the nurses and showed her off. She then took us to the room and checked her vitals and went over the paperwork we filled out. The nurse practitioner, Peg, then came in and we discussed how everything started and what has been going on. She examined Reagan from head to toe to make sure she was growing like she should. Peg also gave us the opportunity to ask her any questions while we were waiting on Dr. Ater.
      When Dr. Ater arrived she introduced herself and told us that she had reviewed again over Reagan's scans and wanted to show them to us. On the computer she showed us the MRI and the MIBG and pointed out to us the tumor and the location of it. She also did tell us that she could see a small sign of calcium deposits on the tumor which could mean signs of the tumor dying off.  It was very awesome of her to show them and explain them to us. Dr. Ater also examined Reagan thoroughly for about 5 minutes. She said how she looks really well and is developing great. She then explained to us the clinical trial that started in Jan. 2001 and ended Jan. 2011 and how she feels this is the best treatment for her right now. This trial consisted of 89 kids who are all still alive today. The trial was based on a wait and watch theory which consists of monitoring the tumor and doing tests periodically to see if the tumor regresses. Of the 89 kids, 4 of the kids opted for surgery before getting started, so 85 kids did the watch and wait. We felt very relieved to get this information and to know how successful it was. It is very awesome to here that the trial had a 100% success fate. She did explain how we would follow the schedule of a 90 week investigation of her tumor. Dr. Ater did say it could take even longer then that for the tumor to be gone. Reagan will have frequent sonograms and then at least 2 more MRIs. It will be a long and stressful process on Blake and I, but we feel this is the best step to take for Reagan. We would love for anything to not have surgery.
     After hearing MD Andersons recommendation and that it matched up with our 2 other opinions, we feel very comfortable to say we are going to follow the clinical trial. We will do all our tests here at Cooks and send them to MD Anderson for them to be reviewed. If for some reason the tumor doesn't regress and we have to have surgery, it will be done at MD Anderson since Reagan is now a patient there. Again, Blake and I feel so blessed to have family, friends and people who we don't know reaching out and praying for us. Our pastor preached on Sunday how we all have to expect the unexpected and to follow GOD's playbook---we are fearing NO evil! Reagan now goes on Tuesday March 1st for her next sonogram at Cooks to see how the tumor is doing and we will let everyone know those results that day. Thanks again for all the prayers and for following Reagan's journey of conquering neuroblastoma.

Tuesday's Meeting with Dr. Granger

 Yesterday Blake and I went to Cooks to see Dr. Granger at 9:45. She gave us the last results we were waiting on---the bone marrow biopsy. She told us that it had not spread to her bone marrow and we were in the clear. Blake and I felt a total sigh of relief- man the power of prayer is amazing!!! She reviewed with us that the tumor was just isolated in her right adrenal kidney gland and that it was the same size as it was when they first found it on the sonogram.
      Dr. Granger went over their plan that they felt was in line with her prognoses. She said that she could follow the clinical trial which is like a "watch and wait" plan. We were handed a schedule of what would happen in the next several months for Miss Reagan to conquer neuroblastoma, that is if Blake and I plan on going this route. Reagan will go on March 3rd at 7:30 for her first sonogram since we first discovered the cancer. The radiologist will look at the sonogram and determine if the tumor has grown, stayed the same, or has reduced in size. Dr. Granger  told us that neuroblastoma is like a mountain- they don't know if when they found it, if the tumor is at it's greatest size or if it's at it's lowest point and is going to continue to grow. She said that a lot of times when they discover this it might grow slightly more but then start decreasing in size and will eventually disintegrate. After that sonogram, Reagan will then go in six weeks from then to do another MRI, which means she will have to receiveanesthesia again. So basically she will continue sonograms and MRI's until the tumor is no longer seen or if surgery is needed.  According to the trial they believe that it is sufficient to do surgery if the tumor doubles in size from when they originally found it. She did say that Blake and I at any point throughout the trial could do the surgery. Blake and I can say that we feel a lot more comfortable now with this than we did at the very beginning because of our faith in the Lord. We did love at the end of our discussion with Dr. Granger that she led us in a prayer for Reagan and for us to help us make the right decision. It feels so good to have a doctor working with our precious angel to have the same beliefs as us.
    Today we also received the feedback from St. Jude. They are on the same page as Cook's, which is to do the clinical trial. We feel a lot better about the clinical trial now that our second opinion is right in line with Cook's.        
   After all of this information, Blake and I definitely have a tough decision to make because Dr. Granger said we could do either option- "watch and wait" or do surgery. It is very hard for us to fathom how to leave a cancerous tumor inside our baby girl. We are continuing to pray about it and look to GOD for our answer. We believe that the clinical trial will be very stressful and hard on us, but we have to think about what is best for Reagan, not us. The surgery is very straight to the point and she will not have to go through the long process of the trial, but she would have to face major surgery. So definitely prayer and determining what is best for her, is what will help us with our decision. We want to thank everyone again that has reached out to us and has prayed for us and Reagan. As everyone can see- Prayer is an amazing tool and is the best gift anyone could receive!! We are blessed to have received the results we did and to know that our angel bug will conquer her cancer. This is just a little bump in the road for her. We will keep you updated as to which route Blake and I choose to take.

Results

All of us finally got a good nights rest after having a LONG day from yesterday!! We had to give Reagan Tylenol for pain from her bone marrow biopsy, but other than that she had no complications from anesthesia or anything else.

This afternoon Blake did receive a call from our pediatrician-Dr. Jay Murphy. He called to say that he received the results from the MRI. He first said I'm sure you haven't heard anything, but I wanted to try to ease your mind over the weekend. Based on the MRI the cancer is just isolated in the right adrenal kidney; it hasn't spread to any other area in her chest cavity. What a blessing it was to hear that news!! Our pediatrician was just too sweet and felt we would like to at least know something. Our Heavenly Father definitely answered our prayers.

While I was typing up this journal, Blake received a call from Dr. Granger. He called me downstairs to go over with me what she had said. It was really nice of her to take time out from her evening and call us the results since it was at 9:50 when she called. She said that after looking at the MRI and the MIBG she was very happy with the results. The tumor is just in her right adrenal gland and has not spread anywhere else in her body. She didn't have the bone marrow results back, but she said that if it was not anywhere else in her body the likely hood of it being in her bone marrow is slim to none. She said that the tumor was the same size and volume as it was on the sonogram. Based on these results she believes that Reagan can go through the clinical study of "watch and wait", but if we feel we just want to remove it we can do that. She said we will go over these results again on Tuesday along with the bone marrow and discuss our action plan of whether to do surgery or the clinical trial. We also are getting a second opinion from another hospital to see if both hospital's plans match up. Blake and I now have a tough decision as to whether we want to do the clinical trial or do the surgery. We are going to pray about it and look to the Lord for our answer.

Today obviously was a GREAT day and we know that there are going to be many more to come. Everyone has definitely brought us the Lord's light during our darkest times. Our GOD is an awesome GOD!!