Please join me in prayer for the Butcher family. We were informed that the doctors are giving JR four to six weeks to live. He is not feeling any pain because they have him on a bunch of medication to help him rest. Unfortunately his brain cancer has consumed his body, and the doctors have done everything they can to keep it under control. JR has always been a fighter, and there is no doubt in my mind that he will continue to fight until he takes his last breath.
Pray that God will continue to hold him close. If the time must come that JR has to leave us, I pray that his spirit leaves his body in a peaceful and painless manner. Even though we may lose him in the physical being, he will never leave our hearts. I am still praying for a miracle because God can do the impossible! A part of me knows that I have to come to terms with JR living out his last days, and it definitely pulls at my heart.
Thank you for all your prayers!
Sunday, January 25, 2009
LATEST MRI RESULTS
We have been patiently waiting on the results of the MRI Kennedy had a few weeks ago. The surgeon called us a few days ago and left us a message with good news! Now, we have yet to speak to him...but the voicemail he left said that the tumor is getting smaller!! WOOHOO! Praise God!
I will update the blog as soon as we are able to speak with the doctor more and get all the details. He mentioned that he met with the Tumor Board at Children's and they have created plan on how to monitor the tumor....and it doesn't involve anymore MRI's!!!
I will update the blog as soon as we are able to speak with the doctor more and get all the details. He mentioned that he met with the Tumor Board at Children's and they have created plan on how to monitor the tumor....and it doesn't involve anymore MRI's!!!
Saturday, December 27, 2008
Busy Busy Busy
Wow, I don't know about you...but our lives have been so busy the past couple of months!!! I barely remember the month of December because things were so hectic and I was too busy running around like a crazy woman. Today was the first day I have been able to sit down, stare at the walls, and do absolutely nothing since probably the week before Thanksgiving!!
Kennedy ended up catching a cold the Tuesday before Thanksgiving, and we have been at the pediatrician's office at least 10-15 times since then. From antibiotic injections, double ear infections, to drawing blood for possible blood poisoning, to breathing treatments....you name it, she has been through it. To add to it, everyone in the house ended up getting sick from her! Kennedy just could not shake the sickness and the doctors were baffled. Larry figured it up, and we spent over $300 in her medication and co pays in less than a month! She just had a follow up appointment on Christmas Eve and they said she needs to see an ear, nose, and throat specialist because she still has fluid behind her ears after a month of treatment.
Kaylee and I were involved with our church's Christmas production, and that seemed to engulf so much of our time. So while we were tending to a very sick baby, fighting off our own colds, and trying to prepare for Christmas at our home....we were also memorizing lyrics, shopping for stage attire, learning choreography, and making sure everything was ready for the production. Kaylee and I ended up getting really sick the week before the show, and the doctor put me on 5 different medications. We were both holding on to the little bit of voices we had left...and I think we did the best we could with our performances (considering our health). The Christmas Experience was a huge success, and the community packed the Apollo to share in the joy that Christmas brings to us. Kaylee rocked her solo in the kids choir with her scratchy voice, and I cried every time she sang it. I was so proud of her!!
We finally had the time to put our tree up two days before Christmas, and even went to get family pictures taken on Christmas Eve...lol. Talk about last minute, but we fit it all in just in time! Yeah it was way too crazy, and at times I was very stressed out...but we were still able to enjoy family time on Christmas day. I will not let our lives get that crazy again, because I had a pretty bad meltdown in front of some friends...and I can't let myself get to that point again. I think it was just everything hitting us at once, and then dealing with all of us being sick really wore our bodies out.
We feel better now, and we are eager to see what 2009 has for us! I am confident that God has so many wonderful things planned and we are excited to live out everyday the way He wants us to! Kennedy will be getting another MRI on January 7th at Children's Hospital to check the status of her tumor, and we know that we will have great results. So help us in prayer for the tumor to be either the same size or shrinking. Heck, pray that it has disappeared because we know all things are possible with God!!!
Kennedy ended up catching a cold the Tuesday before Thanksgiving, and we have been at the pediatrician's office at least 10-15 times since then. From antibiotic injections, double ear infections, to drawing blood for possible blood poisoning, to breathing treatments....you name it, she has been through it. To add to it, everyone in the house ended up getting sick from her! Kennedy just could not shake the sickness and the doctors were baffled. Larry figured it up, and we spent over $300 in her medication and co pays in less than a month! She just had a follow up appointment on Christmas Eve and they said she needs to see an ear, nose, and throat specialist because she still has fluid behind her ears after a month of treatment.
Kaylee and I were involved with our church's Christmas production, and that seemed to engulf so much of our time. So while we were tending to a very sick baby, fighting off our own colds, and trying to prepare for Christmas at our home....we were also memorizing lyrics, shopping for stage attire, learning choreography, and making sure everything was ready for the production. Kaylee and I ended up getting really sick the week before the show, and the doctor put me on 5 different medications. We were both holding on to the little bit of voices we had left...and I think we did the best we could with our performances (considering our health). The Christmas Experience was a huge success, and the community packed the Apollo to share in the joy that Christmas brings to us. Kaylee rocked her solo in the kids choir with her scratchy voice, and I cried every time she sang it. I was so proud of her!!
We finally had the time to put our tree up two days before Christmas, and even went to get family pictures taken on Christmas Eve...lol. Talk about last minute, but we fit it all in just in time! Yeah it was way too crazy, and at times I was very stressed out...but we were still able to enjoy family time on Christmas day. I will not let our lives get that crazy again, because I had a pretty bad meltdown in front of some friends...and I can't let myself get to that point again. I think it was just everything hitting us at once, and then dealing with all of us being sick really wore our bodies out.
We feel better now, and we are eager to see what 2009 has for us! I am confident that God has so many wonderful things planned and we are excited to live out everyday the way He wants us to! Kennedy will be getting another MRI on January 7th at Children's Hospital to check the status of her tumor, and we know that we will have great results. So help us in prayer for the tumor to be either the same size or shrinking. Heck, pray that it has disappeared because we know all things are possible with God!!!
Friday, November 21, 2008
Children's Fundraiser
Check out www.babyruffner.blogspot.com to see the fundraiser that Katie's Salon is holding for Kennedy. They are doing a CUT-A-THON for children's haircuts and 100% of the proceeds go to Kennedy.
Thanks!!!
Thanks!!!
Friday, November 7, 2008
Our day at Children's Hospital
I had been waiting for November 5th to come ever since her MRI in October, and my heart was pounding the whole day in anticipation of hearing the results. We had her Cardiology appointment first before we went to see the Pediatric Surgeon. I was looking forward to seeing both departments...but I really wanted to see the surgeon.
The Cardiologist was amazing and he did a complete run through with Kennedy. Our concerns with her heart were two small ASDs and a PDA. Basically, she had two small holes in her heart and a "tube" that never closed that was allowing blood to go the wrong way in her heart. After an EKG and an ultrasound, Dr. Cockerham came back in and said that she had completely healed herself! That was the best news in the world, and we praised God for giving us the results we wanted. Of course he told me that there might be a one in a million chance that her PDA is so small and inaudible that he could've misdiagnosed her....but he was very confident that it was gone. We'll take it!
Once we went up to the 4th floor, we had to wait a long time because we were late for our scheduled appointment. Once Dr. Burd came in to talk to us...he was totally clueless on why we were there. He thought we were just doing a post surgery follow up from her surgery back in April!!! Apparently, no one from Radiology sent him up the MRI and there was no communication between the departments. He was very apologetic, and I knew it wasn't his fault. I was still upset because we left there knowing more than he did. He did give her a rectal exam, and she took it like a champ! He said that he did not feel a tumor when he did the rectal exam, but he needed to view the MRI. We did agree that she needed her AFP(alpha feta protein) levels checked, so we headed to the lab to get her blood taken. He promised me that he would track down everything and call me either Thursday or Friday. He also told us that Dr. Powell was Kennedy's surgeon, but we had always been told it was Dr. Kanard. It turns out Dr. Kanard was the fellow (resident) and Dr. Powell as the main surgeon. So Dr. Burd was going to meet with Dr. Powell and review her file with him as well.
The phlebotomist could not get a blood sample from Kennedy's arm, and my baby screamed her head off. I stood out in the hallway because I knew I wouldn't be able to watch her be upset like that. Now, Kennedy has been very congested the past few days, so I handed Larry a tissue before they sat her down. Larry said she blew snot all over the place and that tissue was covered!! They ended up getting another nurse to try to get a blood sample from her other arm, and Kennedy was hyperventilating from being held down and poked with needles so long. When Larry and Kennedy came out, I had to get more tissues out to clean off her face from the mucus. Then I looked up and saw that Larry had green snot all over his cheek! lol. She had slimed him! lol lol. She cleaned herself out, that's for sure!!
I got to see Paula and Kathy from Concierge and they gave us some meal tickets so we could eat. We had not eaten all day, and finally sat down to eat something at 5 pm. We hit major traffic once we left, and it took us 3 hours to get home. It was a long exhausting day, but we were really happy about the results we got from Cardiology.
UPDATE!
Dr. Burd called me and said that yes there is a tumor, but it is 9 mm in diameter. It is between her rectum and her sacrum and he was not able to feel it because it was so small and blended with her scar tissue. He told Dr. Powell about our visit, and Dr. Powell wanted to know why we didn't schedule to see him. We didn't know who he was, and we just went with whomever the department set us up with...but Dr. Powell wants to see us from now on.
They viewed the MRI together and weighed out our options for removal of the teratoma. There is a huge risk with removing this teratoma because of the location. If they chose to go in and remove it, they could mess up her continence and give her a lifetime of troubles. That means that they could cut or destroy her muscle structure in her rectum and she would have major difficulties with passing bowel movements.
We are tracking down her previous AFP levels to compare them to the results from Wednesday, and then we will create an action plan from there. All of us agree that the risk is too high to remove the teratoma at this time. Instead, we will be doing interval MRI's to monitor the growth of it.
So overall, we are happy with our situation right now. God is keeping an eye out for Kennedy, and he is helping us with every step. Kennedy is a really happy baby, and we know she is going to be okay.
The Cardiologist was amazing and he did a complete run through with Kennedy. Our concerns with her heart were two small ASDs and a PDA. Basically, she had two small holes in her heart and a "tube" that never closed that was allowing blood to go the wrong way in her heart. After an EKG and an ultrasound, Dr. Cockerham came back in and said that she had completely healed herself! That was the best news in the world, and we praised God for giving us the results we wanted. Of course he told me that there might be a one in a million chance that her PDA is so small and inaudible that he could've misdiagnosed her....but he was very confident that it was gone. We'll take it!
Once we went up to the 4th floor, we had to wait a long time because we were late for our scheduled appointment. Once Dr. Burd came in to talk to us...he was totally clueless on why we were there. He thought we were just doing a post surgery follow up from her surgery back in April!!! Apparently, no one from Radiology sent him up the MRI and there was no communication between the departments. He was very apologetic, and I knew it wasn't his fault. I was still upset because we left there knowing more than he did. He did give her a rectal exam, and she took it like a champ! He said that he did not feel a tumor when he did the rectal exam, but he needed to view the MRI. We did agree that she needed her AFP(alpha feta protein) levels checked, so we headed to the lab to get her blood taken. He promised me that he would track down everything and call me either Thursday or Friday. He also told us that Dr. Powell was Kennedy's surgeon, but we had always been told it was Dr. Kanard. It turns out Dr. Kanard was the fellow (resident) and Dr. Powell as the main surgeon. So Dr. Burd was going to meet with Dr. Powell and review her file with him as well.
The phlebotomist could not get a blood sample from Kennedy's arm, and my baby screamed her head off. I stood out in the hallway because I knew I wouldn't be able to watch her be upset like that. Now, Kennedy has been very congested the past few days, so I handed Larry a tissue before they sat her down. Larry said she blew snot all over the place and that tissue was covered!! They ended up getting another nurse to try to get a blood sample from her other arm, and Kennedy was hyperventilating from being held down and poked with needles so long. When Larry and Kennedy came out, I had to get more tissues out to clean off her face from the mucus. Then I looked up and saw that Larry had green snot all over his cheek! lol. She had slimed him! lol lol. She cleaned herself out, that's for sure!!
I got to see Paula and Kathy from Concierge and they gave us some meal tickets so we could eat. We had not eaten all day, and finally sat down to eat something at 5 pm. We hit major traffic once we left, and it took us 3 hours to get home. It was a long exhausting day, but we were really happy about the results we got from Cardiology.
UPDATE!
Dr. Burd called me and said that yes there is a tumor, but it is 9 mm in diameter. It is between her rectum and her sacrum and he was not able to feel it because it was so small and blended with her scar tissue. He told Dr. Powell about our visit, and Dr. Powell wanted to know why we didn't schedule to see him. We didn't know who he was, and we just went with whomever the department set us up with...but Dr. Powell wants to see us from now on.
They viewed the MRI together and weighed out our options for removal of the teratoma. There is a huge risk with removing this teratoma because of the location. If they chose to go in and remove it, they could mess up her continence and give her a lifetime of troubles. That means that they could cut or destroy her muscle structure in her rectum and she would have major difficulties with passing bowel movements.
We are tracking down her previous AFP levels to compare them to the results from Wednesday, and then we will create an action plan from there. All of us agree that the risk is too high to remove the teratoma at this time. Instead, we will be doing interval MRI's to monitor the growth of it.
So overall, we are happy with our situation right now. God is keeping an eye out for Kennedy, and he is helping us with every step. Kennedy is a really happy baby, and we know she is going to be okay.
Thanks for staying posted!
Tuesday, October 28, 2008
Pumpkin Patch
I surprised Kaylee and took her to Jumbo's Pumpkin Patch in Middletown on Sunday. Larry had to work, so I took both the girls out into the country to enjoy a nice evening together. The drive there was peaceful and so beautiful.
Once we got to the farm, Kaylee was completely shocked that I took her there. We have been talking about going as a family, but Larry has been working a lot of overtime and has been either working or sleeping when we had the opportunity to go. We wanted to go on Saturday, but ended up getting rained out. I really wanted to take Kaylee to a pumpkin patch and have those memories for her to hold on to. The only other time we have ever gone to a pumpkin patch was for her kindergarten field trip. That is a sad thing to admit to, and I didn't want her to miss out on the experience any longer.
I took a bunch of pictures and they both had a blast. Kennedy got cranky on the ride back to the farm from the pumpkin patch, but calmed down once she got her bottle. Over all, it was a fun-filled evening and I am so glad I made the decision to take them. Kaylee begged me to go in the corn maze, but they told me that it was not stroller friendly...and I was not going to attempt to carry Kennedy through a maze that I could get lost in. Maybe Larry and I can get a sitter one night for Kennedy and find a local corn maze to go to.
Once we got to the farm, Kaylee was completely shocked that I took her there. We have been talking about going as a family, but Larry has been working a lot of overtime and has been either working or sleeping when we had the opportunity to go. We wanted to go on Saturday, but ended up getting rained out. I really wanted to take Kaylee to a pumpkin patch and have those memories for her to hold on to. The only other time we have ever gone to a pumpkin patch was for her kindergarten field trip. That is a sad thing to admit to, and I didn't want her to miss out on the experience any longer.
I took a bunch of pictures and they both had a blast. Kennedy got cranky on the ride back to the farm from the pumpkin patch, but calmed down once she got her bottle. Over all, it was a fun-filled evening and I am so glad I made the decision to take them. Kaylee begged me to go in the corn maze, but they told me that it was not stroller friendly...and I was not going to attempt to carry Kennedy through a maze that I could get lost in. Maybe Larry and I can get a sitter one night for Kennedy and find a local corn maze to go to.
Friday, October 17, 2008
MRI at Children's Hospital in DC
Larry and I made the early drive to Children's National Medical Center on Wednesday morning for Kennedy's MRI. Neither of us could sleep the night before, and we both had horrible headaches when we woke up. Our nerves were getting the best of us, and we were just praying for the best outcome possible.
I was more concerned about the anesthesia than I was of the results. Looking back on it now, I think that was something I didn't really need to worry about. Kennedy was a trooper the whole morning. She was smiling at everyone and kicking her little legs with excitement. Her cheerful mood helped us keep our spirits high and kept us laughing while we were waiting on the anesthesiologist.
They gave her a little orange medical gown that was so cute on her. The doctor made her as comfortable as possible and we were able to hold her hands and talk to her until the laughing gas kicked in. They had us leave before they put the IV in her foot and told us that she would be done in about an hour.
We were able to go back into the recovery room and hold her while she woke up. She had to fast before the test, so she was crying for some food as soon as she woke up. Our friends from Concierge came in to check on her and it was so great being able to share that moment with them. Once Kennedy ate a little, she did her best to give everyone a groggy smile. You could tell she was still very loopy, and it made her smiles even more special.
Children's hospital told us that we would not know anything for about a week and someone would call us with the results. They gave us a CD of the pictures they took, so we popped it in our computer as soon as we got home to see if we could find a tumor. Needless to say, we didn't have a clue what we were doing...and we weren't sure what was scar tissue and what was a tumor. They used contrast during the MRI, which is a dye that helps the test be read, so the colors were different as well.
Yesterday, Paula from Concierge called me and she said she spoke to the doctor that read Kennedy's MRI. The doctor told her that there is definitely something there, but there is still more analysis that needs to be done. They want us to go back to DC so the doctors can explain things in more detail. I'm not going to lie, my heart dropped when Paula told me that she still has a tumor; however, we are thankful that she is going to set us up with the best doctors there. Kennedy also needs to see a cardiologist about her heart issues and lower body circulation problems, so Paula is going to cancel our appointment that we already have set up and move all the appointments to one day so Larry doesn't have to miss a whole lot of work.
Larry is worrying himself to death, and I reminded him to stay calm and to keep his trust in God. We have come so far in this adventure, and this is just a little bump in the road. She is a warrior and I know she will continue to win these battles.
Psalm 119:50 says "Your promise revives me; it comforts me in all my troubles"
I was more concerned about the anesthesia than I was of the results. Looking back on it now, I think that was something I didn't really need to worry about. Kennedy was a trooper the whole morning. She was smiling at everyone and kicking her little legs with excitement. Her cheerful mood helped us keep our spirits high and kept us laughing while we were waiting on the anesthesiologist.
They gave her a little orange medical gown that was so cute on her. The doctor made her as comfortable as possible and we were able to hold her hands and talk to her until the laughing gas kicked in. They had us leave before they put the IV in her foot and told us that she would be done in about an hour.
We were able to go back into the recovery room and hold her while she woke up. She had to fast before the test, so she was crying for some food as soon as she woke up. Our friends from Concierge came in to check on her and it was so great being able to share that moment with them. Once Kennedy ate a little, she did her best to give everyone a groggy smile. You could tell she was still very loopy, and it made her smiles even more special.
Children's hospital told us that we would not know anything for about a week and someone would call us with the results. They gave us a CD of the pictures they took, so we popped it in our computer as soon as we got home to see if we could find a tumor. Needless to say, we didn't have a clue what we were doing...and we weren't sure what was scar tissue and what was a tumor. They used contrast during the MRI, which is a dye that helps the test be read, so the colors were different as well.
Yesterday, Paula from Concierge called me and she said she spoke to the doctor that read Kennedy's MRI. The doctor told her that there is definitely something there, but there is still more analysis that needs to be done. They want us to go back to DC so the doctors can explain things in more detail. I'm not going to lie, my heart dropped when Paula told me that she still has a tumor; however, we are thankful that she is going to set us up with the best doctors there. Kennedy also needs to see a cardiologist about her heart issues and lower body circulation problems, so Paula is going to cancel our appointment that we already have set up and move all the appointments to one day so Larry doesn't have to miss a whole lot of work.
Larry is worrying himself to death, and I reminded him to stay calm and to keep his trust in God. We have come so far in this adventure, and this is just a little bump in the road. She is a warrior and I know she will continue to win these battles.
Psalm 119:50 says "Your promise revives me; it comforts me in all my troubles"
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