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!!

Thursday- Test Day

This is me when I first got to the hospital at 10:00 am. I had my good luck outfit on from Steph, Whit, and Delinda and I had my booties on from Jon, Linz, and his mom. I had all of my stuff given to me just for my special day.

Thought: At this point Blake and I were just fine and were very positive and strong about today. We knew that the Lord would be with her and everyone else assisting with her procedures today.

After arriving we waited in the waiting room till 10:50. We got placed in the anesthesia room where they checked her vitals, weight, height, etc. They also went over with us the schedule of her procedures. They told us she would first have her MIBG scan, then her MRI and last her bone marrow biopsy. We were also told that we would see her in recovery in the OR area because that is where her biopsy would take place.

She then started crying and screaming because she was hungry since she had not eaten since 8:00-her big day was to begin at 12:00.It was so hard to look at her sad face and tell her I can't feed you angel. She finally cried herself to sleep at 11:30. At about 11:35 they came in and said that there had been an emergency and a little boy was in the testing room,  so we won't get started until 12:30.

While we were waiting in the room we had Judy Madden from our church come to visit us. All 4 of us circled together and she began to pray for us. At that point we could feel the Lord's presence in the room!! It was so amazing and touching to have her come see us and pray with us!! It definitely helped prepare us for the day.

Well, as you well know 12:30 rolled around and we had not yet started. She began to wake up at 12:45 crying AGAIN because she was hungry. At this point we were feeling every emotion possible- sad, desperate, aggravated, mad, etc. We had to pray at that point everything is going to be OK.
It was then at 1:20 that they finally came in and said we are ready for Miss Reagan. We were told that both of us could go to the next room with her to watch her fall asleep. At that point I thought to myself- I wasn't planning on doing this but I can do it. Blake held Reagan-(still crying) and I walked beside them to the next room. Blake laid her down on the bed and stood right next to her and I stood at the end of the bed. They placed the breathing mask over her crying mouth and at that point I lost it. Just hearing her crying and it echoing inside the mask was so hard to hear. Blake stood next to her saying "I love you angel bug, it's going to be OK." It was then at 1:27 about 1 minute after they put the mask on that she fell asleep. Blake gave her a kiss and I walked over and saw her laying there still and not moving- boy was that hard to see. I saw her mouth wide open just like she does when she is sleeping. I gave her a kiss and said I love you and we both left the room. Blake and I walked out and just hugged each other and said we can do this, everything is going to be OK.

This was probably the hardest thing ever so far other than hearing the news that our sweet girl has cancer. Blake and I definately could not have gotten through this without all the prayer warriors we had reaching out to us and Reagan. We can not thank everyone enough!!


After eating lunch we arrived at the  Surgery waiting room at about 3:00. We were told at this point that the MRI had just started. I began to wonder how long she was going to be under because the MRI takes about an hour and the bone marrow takes about 30 minutes. It was scary to think that our precious girl had already been sleeping for an hour and a half.

At 4:00 we went to the receptionist and asked if she could call  to see where we were at in the process. We received a phone call at 4:15 that Reagan was about to finish up her bone marrow biopsy and she will then be sent to recovery.

It was at 4:45 that we heard the best news of the day- "parents of Reagan Herren ya'll may come on back." When we got to her room she was laying on the bed still asleep. Blake and I talked with the doctor about her day and it wasn't but 15 minutes later that she finally opened her big blues and looked at us- what an amazing sight!! She then began to show us her crying face but no cry was coming out. They explained to us that a breathing tube was down her throat which will cause her throat to be very dry. It was sad to watch her try to cry and not be able to hear anything. We knew at that point she was trying to tell us she was hungry. The nurse picked her up and handed her to me and I sat down to try and feed her. She wasn't really wanting to eat so we poured some breast-milk in a bottle and the nurse attempted to feed her. She did very well and finished  all of her bottle! Once she had eaten and she was breathing on her own, they told us we could go home. Blake and I then dressed her in her going home outfit that Aunt Lindsay bought her!!

We meet on Tuesday February 15th with the oncologist to go over her results. She will also go over with us the action plan we are going to take to help Miss Reagan fight Neuroblastoma.

Blake and I want to graciously thank everyone again for reaching out to us during these hard times. We can't thank you all enough for the words of encourgement and the prayers. We will update on Tuesday with the latest, unless we know something sooner.

Wednesday's Appt & Thursday's Schedule

After meeting with Dr. Granger we are having tons of mixed emotions. We were told that after tomorrow (Thursday Feb 10^th) results we will know more about our action plan for our little angel bug. We were told by her that there are several types of Neuroblastoma, 1, 2, 3, 4 and 4S. Type 1 Neuroblastoma is considered the low risk type and consists of cancer cells that grow to an unknown extent, shrink, die, and sometimes eventually become benign. A treatment option for type 1 is to merely observe and wait for the cells to shrink and die on their own OR surgery if it is a certain size already. Getting periodic scans, bone marrow analysis and MIBG tests done regularly.  This type of cancer is the only one in existence that the body can actually fight off and take care of on its own…SOMETIMES.  However, extensive testing is done regularly (weekly almost) to monitor the cancer.  4S Neuroblastoma is considered the high risk type and consists of cancer cells that keep growing in an aggressive way unless stopped by some form of treatment, although it normally only spreads to certain other organs, the liver is one of those.

           

We will know the answer as to which type this is after Thursday’s tests. We just don’t really understand how we could leave a cancerous tumor in our precious girl and just “watch it”. We can only look to the lord for answers as to what needs to be done for her and can only hope that the cancer is isolated in the right adrenal gland.

Today Reagan got an injection of a Radioactive Dye (liquid through an IV) for an MIBG scan she’ll be having tomorrow. The Neuroblastoma cells in her little body will soak up the dye so that the doctors will have a more accurate picture of if/where the cancer has spread to. It was hard for me to see her get an IV at such a young age and watch her cry through the process. That being said dad had to watch her go through the process while I sat with my eyes closed in a chair at the corner of the bed. I will say she did way better getting one than her mom did on the day we first met our little angel. J After the IV they came in and injected the dye which lasted about 10 minutes. We also got to meet with the anesthesiologist to discuss tomorrow’s schedule.

     

Approximate schedule for tomorrow is as follows:

            8:00- Reagan can’t eat past this time-which will be really hard to see her hungry and 
                       fussy because she can’t eat 4 hours prior to the test

            9:45- Report to registration

            10:00- Reagan will start getting prepped for anesthesia- check vitals and whatever else

11:00- Only one parent can be in the room with her while she is getting sedated. Since mom won’t be able to handle this emotionally, Blake will be in the room with her and watch her slowly fall asleep. When she falls asleep he will be asked to leave and she will then be given the IV with anesthesia.

11:45- The MIBG scan will start and will last about an hour. After this is over she will be wheeled to the next testing room for her MRI.

1:00- MRI will begin and last about an hour. After this is complete she will be wheeled to the OR for her bone marrow test.

2:00- Her bone marrow biopsy will begin and last about 20-30 min. They will take bone marrow from her hip to see if the cancer has spread to her bones.

We are praying that GOD will give us the strength to stay strong for Reagan tomorrow and that our results will be conclusive that the neuroblastoma has not invaded any other part of her precious body.  We are also begging for the strength to always view these trials as pure joy, in hope that they will result in our maturity as a couple and as a family.

Princess Reagan

Help our Princess win her fight against neuroblastoma by donating now.  We covet your prayers and thank you in advance for your support