tag:blogger.com,1999:blog-7039791296385469522024-03-13T23:11:28.245-05:00Brian Robert & LCHUnknownnoreply@blogger.comBlogger140125tag:blogger.com,1999:blog-703979129638546952.post-79785170677107789282015-10-26T12:22:00.002-05:002015-10-27T07:45:32.858-05:00Update Oct 2015 <br />
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<span style="color: black;"><span style="background-color: rgba(255, 255, 255, 0);">Dear friends,<br /> We are happy to announce that Brian's MRI of his brain did not show any changes from last year's imaging. This is good news as it means there is no current activity of LCH doing damage in his little body. He's been doing so well we would have been shocked by any other news! He has been growing as he should which, again, is a huge praise as the growth hormone being affected is the next symptom to watch for with Brian's CNS LCH. If interested you can read more <a href="http://www.histiocytesociety.org/document.doc?id=254" target="_blank">HERE</a><br /> This past year Langerhans Cell Histiocytosis was recognized officially as cancer. It is a rare disease that isn't that well known (even my spell check doesn't identify the words). In being labeled as a pediatric cancer we hope more pediatricians and other doctors will learn about the signs and symptoms so that diagnosis can be made and proper treatment given.<br /> While Brian will take medicine for the rest of his life because of his Diabetes Insipidus (secondary diagnosis because of LCH damaging his</span></span> <span style="color: black;"><span style="background-color: rgba(255, 255, 255, 0);">pituitary) we are so grateful to God that Brian is where he is. It could have been so much worse. God is faithful and He is good, even in the hard. We've said it before but it often needs repeating, God's sovereign hand doesn't mean everything is perfect, but He is perfectly working for our</span></span> </blockquote>
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<span style="color: black;"><span style="background-color: rgba(255, 255, 255, 0);">good and His glory.<br /> This journey with Brian's illness and treatment has given us a perspective to what is truly important. Our life here on earth is vapor. We don't want to waste it storing up treasures on earth, but we want to be investing in the kingdom and keep an eternal mindset. Some of you may have heard that we started foster parenting this past year. We've been met with mixed responses. Some are so thrilled knowing we have a strong family unit and want to share that with children that come from abuse, neglect or abandonment. Others offer the "you've already been through too much just focus on you" comment. We just don't see in scripture where we are called to a life of comfort and security where we focus on self. We are called to a life of service and love. We feel God has called us and as 1 Thessalonians 5:24 says, "he who calls you is faithful; he will surely do it." HE is the one who equips and sustains us. HE is the one that carried us through four and half years of chemo, surgeries, uncertainties, sickness, financial stress from exorbitant medical bills, etc. During a trial that can tear marriages apart God healed and knit us together. During a time that can lend itself to bitterness and anger towards God, He showed us His grace, mercy and LOVE during the hard.<br /> He is good and we want to share that love with vulnerable little ones and their family in hopes that we can be an instrument in the redeemer's hands.<br /> Thank you for your prayers and encouragement for Brian and our family. Please continue to lift us up as we seek to glorify God in all that we do.<br /> Carrie </span></span></blockquote>
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For some reason I can't get pictures to load so I will try later today. :-)<br />
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We didn't get pics this year, but here's a picture from last year's MRI. Brian's first 45 minute brain MRI without sedation. Oct 2014<br />
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<span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">Brian with Dr McClain Oct 2015 </span><br />
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<span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">SO very thankful these next images are a part of our past and not our weekly routine anymore!!! God has brought us through so much!! </span></div>
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<span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"> Getting ready for a treatment, but blood work first. 2009</span><br />
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<span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">The second port and getting ready for round 2. Fall 2010 </span></div>
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Spring 2012-Fred and Carrie responsible for home infusions.</div>
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Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-703979129638546952.post-33253403946291614752014-10-24T14:11:00.001-05:002014-10-24T14:11:43.917-05:00Update Oct. 2014<div style="-webkit-text-size-adjust: auto; font-family: UICTFontTextStyleBody; font-size: 17px;">
We saw Dr. McClain today and received GOOD news. Brian's MRI was NOT changed. This is wonderful as it means that Brian does not have to start any new treatment. Brian does have symptoms presenting, but Dr. McClain said that in their current state he would not do anything to treat them. If the lesions get as big as a thumb or if Brian starts to have balance problems, or significant drainage from the ears, then doctor McClain would want to treat. But since none of those things are going on and Brian's MRI is unchanged then we continue to watch. This is fantastic. Brian has a tremor, but he has been exposed to some harsh chemo over four and a half years of treatment. (September 2014 marked five years since diagnosis and Brian hasn't been on chemo since April 2014.) We are thankful for the blessing of today's good news and the reassurance that Dr. McClain will not be retiring for several years. And after that time he will not retire but just adjust his schedule. We are SO thrilled he will be Brian's doctor for the foreseeable future! </div>
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Thank you for your prayers for our precious Brian Robert!!!<br /><br /><div>
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Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-703979129638546952.post-14848076494490914492014-10-23T18:41:00.002-05:002014-10-23T18:54:24.279-05:00Back to Texas Children's We are in Houston to see Dr. McClain again. Brian has been off chemo since April, but just like the past several years he started showing symptoms by early fall. Truly, he has a pattern. Just a few months off treatment and symptoms come back! So, here we are. Yesterday Brian had an MRI and he did it withOUT sedation. Forty-five minutes in a loud, clanging-banging MRI tube LIKE A BOSS!!! We are so proud of him.<br />
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Today we went to the Houston Zoo for a fun family day. Thursday's the doctors and radiologists at Texas Children's Cancer Center review files and discuss treatment plans. We were told Brian's case would be one of the top studied and reviewed today. Tomorrow we meet with Dr. McClain and discuss where to go from here. Thank you for your prayers. We are carried by them. We will keep you updated.<br />
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(Trying to add pictures but can't figure it out from my phone.)Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-703979129638546952.post-16594985362689852712014-04-20T21:19:00.002-05:002014-04-20T21:25:54.735-05:00The long and picture filled version Wednesday morning we woke up and went to Brian's regular Endocrinology appointment. Everything went well and all levels are good. <span style="font-size: x-small;">(For the record when I say that levels or tests look good or are excellent it is always with the understood "for what Brian has going on". He has not had a "normal- what every other kid would look like" test result since he was two.)</span> We left from the hospital here and headed straight to Houston, TX. The first night of our trip we stayed in Fred's parent's camper at an RV park in Houston. They live in NM, but went to Houston a few days before we did and helped out with the other kids on this trip. The older three where excited to swim in the pool before dinner. Miss Olivia was saddened that she couldn't participate and was reminded how much she hates her cast.<br />
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-_DTHb-556sg/U1R46DRINzI/AAAAAAAAJoM/U2hxSMhI5vY/s1600/swimming+in+TX.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-_DTHb-556sg/U1R46DRINzI/AAAAAAAAJoM/U2hxSMhI5vY/s1600/swimming+in+TX.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">looking forward to swimming at Grandpa and Grandma's RV park </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">sitting on the bottom of the hot tub</td></tr>
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Thursday morning I woke Brian up at 5:30 AM and fed him breakfast as he was NPO from 6:00 AM onward. He went back to sleep after eating and everyone got up and we got our day moving around 6:45 AM. After a morning of playing in the camper and the exercise room at the RV park, we headed to Texas Children's. Brian was checked in for his MRI with sedation at 11:45 AM. We were called back fairly quickly, but just to sit for hours. We believe that someone was bumped ahead of Brian. Around 2:00 ish we were being moved to a different floor where they would actually do the MRI. That meant the waiting room near recovery for the MRI was in a different building then where we had started our day. Fred went in search of his parents and our other three kids in the cafeteria where they where eating lunch. They didn't know about the change and where they were currently located was closer to where we would end up. Fred wanted to catch them before they walked back to the other building where we had started our morning. He grabbed some lunch for himself and as he was doing that I called him to rush them along saying that things were happening quicker than we had thought. Fred bagged up his lunch and quick grabbed something for me and headed to the MRI waiting area. They anticipated that I would walk out within minutes saying Brian's procedure had started. It was well over an hour an a half later. Poor Brian fought getting his IV and kicked and cried, resisting the entire process. It took three of us to hold him down. Then every five to ten minutes someone would come in like "this is it" only to have something delay the process. (Apparently they draw the meds for each specific patient earlier in the day. When it was Brian's turn, one of the delays was that his propofol had expired by 45 minutes so a new syringe had to be drawn.) Brian was so worked up he fell asleep in my lap. Finally everything fell into place and he was put to sleep with propofol and I went out to the waiting room with the rest of my family only to discover that Olivia had come down with a fever and wasn't feeling well. We decided that Fred and his Dad should head over to our hotel and get checked in so Olivia could rest. About 20 minutes after they left I was called back to recovery with Brian. He was Chatty Cathy and asking to see the pictures of his brain. The nurse was super sweet and asked if she could pull them up and show Brian. She was allowed to and he loved seeing his "creepy" brain.<br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-FsMJz5rrlzM/U1R33goQNZI/AAAAAAAAJnY/jqI5htJ8rPQ/s1600/MRI+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-FsMJz5rrlzM/U1R33goQNZI/AAAAAAAAJnY/jqI5htJ8rPQ/s1600/MRI+1.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brian giving a robot an MRI or PET scan in the waiting room </td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-l4IUAlC_7jE/U1R3_KJp3SI/AAAAAAAAJno/vIHVYJdzOms/s1600/waiting.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-l4IUAlC_7jE/U1R3_KJp3SI/AAAAAAAAJno/vIHVYJdzOms/s1600/waiting.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">getting checked in</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">really scared and not looking forward to what's about to happen</td></tr>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-RYGYC7N04H8/U1R4DPfQMgI/AAAAAAAAJnw/dMmcaEvXl_0/s1600/B+sleeping.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-RYGYC7N04H8/U1R4DPfQMgI/AAAAAAAAJnw/dMmcaEvXl_0/s1600/B+sleeping.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So worked up that he fell asleep in my lap.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Olivia not feeling well as we wait for Brian's MRI to be completed. </td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-zREjP1_0INw/U1R5q7efVeI/AAAAAAAAJoc/25eTH6Mdzpo/s1600/b+chest+from+TX.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-zREjP1_0INw/U1R5q7efVeI/AAAAAAAAJoc/25eTH6Mdzpo/s1600/b+chest+from+TX.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Brian's skin is so sensitive. This is from the EKG.(scar on B's right side of chest is from port removal)</td></tr>
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We got to the hotel not too long after Fred checked us in. We got our stuff set down and Fred, his parents and Ansley left to get dinner to bring back as it was past 5:30 PM by this point. While Olivia, Brian, William and I were resting we got a knock on the door. Room service delivered some treats for Olivia with a sweet card saying they hoped she felt better soon. <span style="font-size: x-small;">(We stay at the Marriott because it is across the street from Texas Children's. It is SO convenient. We get a medical discount rate and we assume they saw Olivia's cast + she obviously didn't feel well at check in and put that all together assuming we were there for her. She got something special from the staff each day we were there.) </span>While the man was in setting down the complementary tray he let me know that if we are interested in room service any time during our stay that they have several options and a 20% fee is charged, but feel free to tip above that. Brian looks at the man and asks, "Do you have cheese pizza?" The man replied with a smile and a "yes" while looking my way. I was so tired and I knew there wasn't a pizza place within walking distance and that Fred was most likely coming back with Chinese food that Brian doesn't really eat anyway. I said sure, get the boy his pizza inwardly thinking that Fred's going kill me when he hears that I just let Brian order a pizza that is going to cost us $50! It didn't cost that much, but it made Fred and I chuckled that our seven year old now likes to say that he prefers the Marriott and likes room service.<br />
After dinner Fred's parents went back to their RV park and we crashed for the night. We tried to fall asleep instantly but Brian was mister giggles and said he couldn't quiet down because, and I quote, "this is my time to giggle and be silly since I didn't get to the rest of the day!"<br />
Friday morning we headed straight over to Texas Children's and Brian's appointment with Dr. McClain. The movie Frozen was playing in the waiting room and a child life specialist was doing an Easter craft with the kids. We had a wonderful appointment with Dr. McClain. I still love the man and couldn't find a single thing to complain about. He takes time to listen to us and Brian and never acts rushed or distracted. Brian was telling Dr. McClain about the pictures of his brain and Dr. McClain offered to pull them up again so Brian could take another look. Brian really appreciated it. He likes looking at his insides.<br />
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<tr><td class="tr-caption" style="text-align: center;">making an Easter craft </td></tr>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-zQ0s6fulapE/U1R6kXNIyHI/AAAAAAAAJos/7K9O1WjZyBo/s1600/in+waiting+room+2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-zQ0s6fulapE/U1R6kXNIyHI/AAAAAAAAJos/7K9O1WjZyBo/s1600/in+waiting+room+2.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">the cheerful waiting room</td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-F_5pXLRB0iQ/U1R7CWOVteI/AAAAAAAAJo0/PU75Fhuy0eY/s1600/b+and+Dr.+McClain.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-F_5pXLRB0iQ/U1R7CWOVteI/AAAAAAAAJo0/PU75Fhuy0eY/s1600/b+and+Dr.+McClain.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. McClain showing Brian his MRI of the brain.</td></tr>
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I will finish my "journal" of our trip later, but for now here are the pictures...<br />
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-hl9Uq7BAgm8/U1R7RbCoNqI/AAAAAAAAJo8/MYryoM2t_eo/s1600/b+pet+scan.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-hl9Uq7BAgm8/U1R7RbCoNqI/AAAAAAAAJo8/MYryoM2t_eo/s1600/b+pet+scan.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">checking out the PET scan machine</td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-Ij-Wxzj_NC4/U1R7oGzyYuI/AAAAAAAAJpE/bFr0Zn5b5MY/s1600/b+waiting+PET+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-Ij-Wxzj_NC4/U1R7oGzyYuI/AAAAAAAAJpE/bFr0Zn5b5MY/s1600/b+waiting+PET+1.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">just chillin'</td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-JzaaNFu1-9E/U1R7zSNQspI/AAAAAAAAJpM/1ow5CWvsDHE/s1600/b+waiting+PET+2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-JzaaNFu1-9E/U1R7zSNQspI/AAAAAAAAJpM/1ow5CWvsDHE/s1600/b+waiting+PET+2.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">getting scared and not looking forward to propofol </td></tr>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-REqf_Z_aquM/U1R74VxuSJI/AAAAAAAAJpU/Fq1OEeH65x0/s1600/b+and+wyneth.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-REqf_Z_aquM/U1R74VxuSJI/AAAAAAAAJpU/Fq1OEeH65x0/s1600/b+and+wyneth.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wyneth, our wonderful recovery nurse two days in a row. </td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-jXFIbhz06M0/U1R8KJUO7KI/AAAAAAAAJpc/S0KABOqnE1k/s1600/throwing+away+chemo.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-jXFIbhz06M0/U1R8KJUO7KI/AAAAAAAAJpc/S0KABOqnE1k/s1600/throwing+away+chemo.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy to be throwing away the oral chemo pills!!</td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-GeON4pVUChU/U1SABY8l2YI/AAAAAAAAJpk/xMgZQKxAeMg/s1600/Easter+2014.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-GeON4pVUChU/U1SABY8l2YI/AAAAAAAAJpk/xMgZQKxAeMg/s1600/Easter+2014.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy Easter ~ HE is Risen! </td></tr>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-703979129638546952.post-33914977048951185862014-04-20T18:44:00.001-05:002014-04-20T18:52:09.057-05:00NO MORE CHEMO!! ~Take 3 As the title of the post indicates, we had a great check up with Dr. McClain at Texas Children's. I will give a long play by play with pictures for those of you interested, but the short version is this: NO MORE CHEMO!!!! Brian's MRI revealed <i>no changes</i> from last year. The two spots on his brain remained the same which would indicate that there is no new LCH activity. His growth is steady which is super encouraging and means that his growth hormone was not effected when his pituitary was damaged. Brian did outstanding on the clinical assessment this year. Remember he didn't do too well last year and it made us suspicious of neurological involvement. Since Brian did so amazing this year Dr. McClain explained to us that what we saw last year was "chemo fog" or "chemo brain". Apparently the type of chemo and the length of time that Brian was on chemotherapy affected his brain. Fortunately, it was only temporary. Now, a year later, Brian is doing outstanding. We are able to stop his oral chemotherapy. Dr. McClain said that if more symptoms appear <i>in the skin</i> then we can call him and he will give Brian a new prescription for another six months of oral chemo. Skin involvement is not the same as internal multi system involvement. We believe that Brian's LCH is no longer active and doing damage. He may present some skin symptoms, but Dr. McClain reassured us that based on his research and several factors from Brian's particular case (<i>1</i>.the specific drugs Brian has taken <i>2</i>. the length of time Brian was on those drugs <i>3.</i> the time from DI diagnosis to now with no other internal activity <i>4. </i>the MRI unchanged from last year to this, etc) that Brian should not need more infusion chemo because his disease has been managed. Obviously Dr. McClain cannot give us a 100% guarantee, but he felt pretty confident based on his research and experience with LCH. I have said it before, but I will say it again, Dr. McClain is <i>THE MAN</i> when it comes to LCH treatment and research. We are so thankful and feel very blessed that Brian is in his care. We are thrilled and do feel some relief that this chapter in our lives just might be coming to an end. While we will always look over Brian with a set of cautious eyes, we do feel a bit of reassurance that it is not likely that he will have active LCH in his body again. <br />
<br />Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-703979129638546952.post-57295760299228986082014-04-05T12:17:00.003-05:002014-04-05T14:09:40.796-05:00Update <span style="font-size: x-small;"><span style="font-family: "Trebuchet MS",sans-serif;">Well, I am absolutely the world's worst blogger, but here is an update for the three of you that still check the blog looking for updates about our sweet Brian.</span></span><br />
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We have been keeping this blog for several years now. It started out when Brian had his first recurrence in 2010 and we were so devastated that we could not physically or emotionally tell everyone that cared and loved our family "the update". I keep a family blog that is our digital scrapbook and photo album. It is locked and private. We didn't want to open it up for just anyone surfing the Internet. We didn't want some weird-o's having access to seeing our babies sing and dance in their diapers or taking a bath. But we wanted a way that we could inform all of our loved ones what was
going on without having to retell the news sixty-five times. It wasn't possible to respond to every inquiring loved one. So, we started this blog knowing we would be more discerning in what we posted. Maybe it would even help some other family searching about Langerhans Cell Histiocytosis... <br />
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It has been therapeutic to go back and read posts from the past. God has brought us through so much. We are so blessed. For those of you that follow this blog and get posts emailed to, sorry if you got some links and now they are deleted. I accidentally posted our family pictures and stories to the wrong blog. I think I have it all corrected now. :)<br />
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These lasts few months have been silent on the blog, but busy in real life. Brian has done fantastic on the oral chemo. He swallows six chemo pills every Thursday. Those six pills are in addition to his five DDAVP that he swallows three times a day. He's a champ. I remember my Dad having to wake me up at 3 AM and put Malaria Pills in my mouth and lift my chin, rubbing my throat like a dog to get me to swallow it. <span style="font-size: x-small;">(in preparation to go to Africa on a missions trip)</span> I was eighteen. Brian is seven and can swallow eight pills at one time. He's a champ! He has minimal side effects and his symptoms seem to be under control.<br />
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In October when Brian started oral chemo we went to the hospital every two weeks for blood work. In January we were allowed to move to once a month because his counts and liver function were looking so good. So, for the last three months we have been absolutely amazed at how "normal" we have felt. It has been FABULOUS!!!!!<br />
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But in true Schreiber fashion we still had some medical drama sprinkled in there. But NOT with Brian. With William and Olivia. :)<br />
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We had planned to spend Christmas in New Mexico with Fred's family this past year. Because of having four babies in four years, moving eight times in seven years, Fred's back surgeries, Brian's port and chemo, etc, etc. we have only traveled to New Mexico like maybe seven times in the last ten years. We were all pumped and excited to play at our New Mexico Grandparents house and see our Denver cousins again.<span style="font-size: x-small;">(They had just been here to visit before school started back)</span> <b><i>THIS</i></b> was the year we were feeling "normal" and out of the woods as far as medical drama is concerned. <i>We were excited!!</i> Three days before we were to fly out to New Mexico William broke his arm. <a href="http://brianslch.blogspot.com/2013/10/pet-scan-pictures.html" target="_blank">Remember those special kitties</a>. Well, we were at the friend's house that adopted those kitties. William was outside with the boys when one of those kitties got out of the fence. William was concerned that the cat would run away and die, so he climbed the fence to go after the kitten. His foot got stuck and he somehow fell, breaking his left arm. However, he didn't stop. He continued to rescue the cat. He shoved it back through the slats of the fence and then climbed back over the wooden six foot fence with a broken arm. He is made of steel, I tell you!!! But the trauma of seeing him come in all white and then the drama of seeing his arm just dangling and crooked...It was a shocker!! I think I will post a picture of it. <i>It was traumatic for all of us!</i> Well, God also encouraged me that day because our sweet friends live 37 minutes away from the hospital. The entire way to the ER I was praising God for <a href="http://brianslch.blogspot.com/2012/05/long.html" target="_blank">where we live</a>. I cannot imagine driving that with Brian the last four years. While I sometimes hate that our house is old and still needs so many things done to it, I am SOOO thankful for its location. It has truly been a blessing. William was amazing through the entire ordeal. He is AMAZING. We ended up canceling our New Mexico trip and William had surgery and spent a couple days and one night at the hospital. He wore a cast for six weeks and still has pins in his radius and ulna. We hope he can keep them in a couple more months as his bones heal. He will have surgery to remove the pins in June if not earlier. His body is starting to not like that they are in there.<br />
Well, as if that wasn't enough, two weeks ago we were headed to church and Olivia fell out of Fred's truck and broke her arm. We went straight to the ER and got right in. There are perks to being recognized in the ER. But, ummm, do we want to be recognized in the ER?!! Anyway, the ER x-rayed her, put a splint on her and sent us home. The ER doctor said it wasn't a bad break and didn't need to be set. When we went to her appointment with Orthopedics the next day, they asked if her arm was set in the ER. We told them "NO, we were told it didn't need it." Well, it did and they did a reduction (re-aligning the bones) in the office with NO anesthesia or pain meds. Olivia screamed and wailed and cried. I cried. The PA teared up. Fred got angry that they did this to his baby girl. It was horrible. <i>Horrible</i>. <b>Horrible</b>!! They put a splint back on her and sent us home for a week so the swelling could go down before they cast her. She got her cast on last Monday (3/31) and will wear it for four weeks. Then she will get a below the elbow cast and wear it for two weeks.<br />
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We just like to give all of our money to Sacred Heart Hospital and Nemours. We should have a wing named after us. Or at least a bench dedicated to us. <b>:)</b> <br />
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OK, in all seriousness we would really appreciate your prayers over the next few weeks. We travel back to Texas in ten days for Brian's PET scan, MRI and an appointment with Dr. McClain. We are PRAYING that he can either (1)be all done with treatment or (2)if he still needs treatment that it can still be oral chemo. We will keep you posted. Thanks for hanging in there with us.<br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-DtNzBDxS9Qg/U0A_-6WH3iI/AAAAAAAAJjc/WOceenaCBws/s1600/christmas+2013.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-DtNzBDxS9Qg/U0A_-6WH3iI/AAAAAAAAJjc/WOceenaCBws/s1600/christmas+2013.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All four, growing too fast. </td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-yYGq8cZXUlQ/U0BALw8gDFI/AAAAAAAAJjk/O8vfwkOrgQ0/s1600/christmas+2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-yYGq8cZXUlQ/U0BALw8gDFI/AAAAAAAAJjk/O8vfwkOrgQ0/s1600/christmas+2.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">on the hunt for our family Christmas tree</td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-8zVorqxGwso/U0BAl2iBlUI/AAAAAAAAJjs/M949EqhYMiI/s1600/broken+arm+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-8zVorqxGwso/U0BAl2iBlUI/AAAAAAAAJjs/M949EqhYMiI/s1600/broken+arm+1.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">William's broken arm on December 17, 2013. </td></tr>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-vc5Uig6xcKk/U0BAqfRhjoI/AAAAAAAAJj0/lkFDiPycjh8/s1600/broken+arm+2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-vc5Uig6xcKk/U0BAqfRhjoI/AAAAAAAAJj0/lkFDiPycjh8/s1600/broken+arm+2.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He was sedated to have it set in the ER. We went home for 36 hours then came back for surgery on the 19th. </td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-AWUa42TGWus/U0BBQ9jZ8rI/AAAAAAAAJj8/GUi4fUi_2MA/s1600/broken+arm+3.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-AWUa42TGWus/U0BBQ9jZ8rI/AAAAAAAAJj8/GUi4fUi_2MA/s1600/broken+arm+3.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">being wheeled off for surgery</td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-nYvEEdtZV5M/U0BBuQUUfEI/AAAAAAAAJkQ/rs4CyFjpsc8/s1600/broken+arm+4.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-nYvEEdtZV5M/U0BBuQUUfEI/AAAAAAAAJkQ/rs4CyFjpsc8/s1600/broken+arm+4.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">after surgery </td></tr>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-pVwxww4WrK8/U0BCwIIUuII/AAAAAAAAJkc/OjHTNqQZwoc/s1600/broken+arm+5.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-pVwxww4WrK8/U0BCwIIUuII/AAAAAAAAJkc/OjHTNqQZwoc/s1600/broken+arm+5.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">sweet William</td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-yFkycxquLJE/U0BB_Bwq8fI/AAAAAAAAJkU/XW_F_Sae2Qw/s1600/broken+arm+6.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-yFkycxquLJE/U0BB_Bwq8fI/AAAAAAAAJkU/XW_F_Sae2Qw/s1600/broken+arm+6.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">spending some time in the hospital</td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-UpRvTijqW_8/U0BDLK65UXI/AAAAAAAAJkk/-rWmhXfIZJ8/s1600/broken+arm+7.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-UpRvTijqW_8/U0BDLK65UXI/AAAAAAAAJkk/-rWmhXfIZJ8/s1600/broken+arm+7.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">William's new hardware</td></tr>
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When Brian got restless and didn't want to be in the hospital we went for a walk to find his ceiling tile. Remember <a href="http://www.brianslch.blogspot.com/2012/06/we-are-home.html" target="_blank">he painted it</a> during one of his week long stays last summer. Well, we found it!<br />
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<a href="http://2.bp.blogspot.com/-jNs_hziuf8U/U0BDhSva9TI/AAAAAAAAJkw/N2yaSh6N5PY/s1600/Brian%2527s+tile.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-jNs_hziuf8U/U0BDhSva9TI/AAAAAAAAJkw/N2yaSh6N5PY/s1600/Brian%2527s+tile.JPG" height="400" width="300" /></a></div>
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When it got to be too much for Brian he went and hid in the closet with the iPad. He DID NOT like seeing his brother in the hospital. <br />
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<tr><td class="tr-caption" style="text-align: center;">sweet Brian hiding in the closet with the iPad </td></tr>
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Once William was released from the hospital we had a week at home before he was to get his cast. William had to keep his arm elevated and keep those fingers moving. When sleeping William had to have his arm hanging in the air. I thought of putting one of those command hook stips on the wall, but Fred was not going have William's arm fall in the middle of the night if that hook fell off the wall. He is such a good Daddy. Fred put a huge hook in the wall to ensure that William's arm was NOT going to fall.<br />
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-_4FqYLk3C-E/U0BHjlbdKoI/AAAAAAAAJlU/6gFRWDAtqxI/s1600/broken+arm+11.PNG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-_4FqYLk3C-E/U0BHjlbdKoI/AAAAAAAAJlU/6gFRWDAtqxI/s1600/broken+arm+11.PNG" height="400" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Apparently we didn't get a picture of this with a camera. This picture is of a screen shot from Instagram. </td></tr>
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-8GSUZNtu3Po/U0BEnh0TxBI/AAAAAAAAJlE/cUAUJPN6zQw/s1600/broken+arm+9.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-8GSUZNtu3Po/U0BEnh0TxBI/AAAAAAAAJlE/cUAUJPN6zQw/s1600/broken+arm+9.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Two days after Christmas William got his cast put on. </td></tr>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-uQtXTPvlC7M/U0BEvmJtgkI/AAAAAAAAJlM/k1M5r0-kR2A/s1600/broken+arm+10.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-uQtXTPvlC7M/U0BEvmJtgkI/AAAAAAAAJlM/k1M5r0-kR2A/s1600/broken+arm+10.JPG" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Six weeks later William got his cast off. </td></tr>
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Five weeks or so after William got his cast off, Olivia took her turn with the ER and Orthopedics.<br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-wzmLfCy-QLU/U0BMBny_PHI/AAAAAAAAJlo/JmI9BCsZMko/s1600/o+broken+arm+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-wzmLfCy-QLU/U0BMBny_PHI/AAAAAAAAJlo/JmI9BCsZMko/s1600/o+broken+arm+1.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In the ER after X rays after getting her arm wrapped up. 3/23/14 </td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-Lk4hQ2cuZlY/U0BMG3J8X_I/AAAAAAAAJlw/q-z4r4GTRE0/s1600/o+broken+arm+2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-Lk4hQ2cuZlY/U0BMG3J8X_I/AAAAAAAAJlw/q-z4r4GTRE0/s1600/o+broken+arm+2.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">the X rays of Olivia's arm </td></tr>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-QRso3g4VSC8/U0BM0B0wP3I/AAAAAAAAJl4/HvDS4vts4L0/s1600/o+broken+arm+3.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-QRso3g4VSC8/U0BM0B0wP3I/AAAAAAAAJl4/HvDS4vts4L0/s1600/o+broken+arm+3.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our family in the ER with Olivia's broken arm. 3/23/14</td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-AOnPPXFGrAA/U0BPXbjXwxI/AAAAAAAAJmE/iLURoBCzx18/s1600/o+broken+arm+4.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-AOnPPXFGrAA/U0BPXbjXwxI/AAAAAAAAJmE/iLURoBCzx18/s1600/o+broken+arm+4.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">getting her blood pressure taken before ortho appointment 3/24</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Getting ready for the reduction. I set my phone aside. There were no taking pictures of that horrible ordeal. </td></tr>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-455M92abWVc/U0BPluUu7HI/AAAAAAAAJmc/-d0CjkTbHWE/s1600/o+broken+arm+7.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-455M92abWVc/U0BPluUu7HI/AAAAAAAAJmc/-d0CjkTbHWE/s1600/o+broken+arm+7.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Getting X-rays after the reduction to make sure it worked. You could tell Livs had been crying.</td></tr>
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A week later we headed back for her cast. She wasn't thrilled to be there. They had move her bones a bit more because they weren't totally lined up anymore. It wasn't near as bad as the week before but it was still really sad to watch her go through it. <br />
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<br />Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-703979129638546952.post-82794631541100365512013-11-19T19:30:00.000-06:002014-04-05T08:36:24.840-05:00Monthly Appointment Brian's counts continue to be good (given all he has going on) and his liver function is good too. After today's appointment we went over the infusion side and said hello to one of our favorite nurses that we miss. We hate not seeing her often but we are SOOO thankful that we don't HAVE to see her often. She had to get a wheelchair for another patient so she walked with us to the elevators. We enjoyed chatting with her and getting the update on another nurse from the infusion center that we miss. <br />
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<tr><td class="tr-caption" style="text-align: center;">Brian and Nurse Sherry </td></tr>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-703979129638546952.post-63496848439254174262013-11-14T08:22:00.000-06:002014-04-05T08:26:07.016-05:00Update The PET scan was never sent to Texas Children's for Dr. McClain to view. Fred went down to Sacred Heart and got it on CD to send it Fed Ex to Texas.<br />
After Dr. McClain and the Histio review board looked at the images we heard back on the findings. Apparently they were not able to merge the images to view things like you are typically able to do. Each individual image appeared OK, but not being able to merge made it difficult to really diagnosis anything from this particular PET scan.<br />
OK, all that means nothing to me, but Dr. McClain said we could redo the PET scan in Texas, but there was no sense of urgency so we could wait until we are there in April. We are taking that as good news. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-703979129638546952.post-22883662585424761212013-10-29T21:30:00.000-05:002014-04-05T08:20:47.916-05:00The PET scan <div class="separator" style="clear: both; text-align: center;">
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Brian had his PET scan at Sacred Heart this afternoon. He attempted it
without sedation. They were fantastic and let him walk through what was going to happen and actually go
see the machine before he was given his IV and injected with dye. After given the dye Brian had to sit absolutely still for an hour. We watched Netflix on the ipad. The ipad is our constant chemo companion. Worth every penny!! </div>
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Brian "sat still" and did the entire procedure without sedation. I say "sat still" in quotes because I was in the room with him and felt like he was moving quite a lot. The tech said they got what they needed but we will see. :) </div>
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We were proud of our boy for making it through the PET scan like a champ! Here he is posing in front of the machine. Of course blankie was with Brian too. <i>Sir Blanks A Lot, Blankie, Kee-Kee</i>- it has had several names through the years, but has always been within arms reach of Brian. I often think about my Aunt Carol stitching Brian's blanket together many years ago. She had no idea that the baby blanket she was making for her precious great nephew would be such a source of comfort and stability and would travel to so many things. Well, maybe she did. She saw me love on my Aunt Carol blanket for ten years. My blanket was so loved it was really shreds of yarn. Aunt Carol made me replacement blanket when I was a teenager. I have it displayed in Olivia's bedroom and my original blanket is in a drawer. </div>
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Blankie is more than just a lovey. It kinda makes me want to learn how to knit (again) so that I can carry on the Aunt Carol tradition. She tried to teach me how to knit. My sweet Aunt Carol came over to my house a couple of weeks after Brian was born and spent a few hours with me attempting to teach me how to knit. I "got it" but being that I had a newborn and two other toddlers there wasn't much time for knitting. I don't really remember how to knit now. Anyway, Blankie and Brian made it through a PET scan without sedation!! </div>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-703979129638546952.post-25990404689012148972013-10-28T09:49:00.000-05:002013-10-28T10:10:31.652-05:00PET SCAN & picturesI am sorry it has taken me so long to get back on here and update. Thank you to the many of you at church in PC that asked my dad for an update. As he informed me yesterday, as did my mother in law, neither of them had the update. Apparently I forgot to tell them we had a date for the PET scan. I am so sorry. TOMORROW, Tuesday the 30th is the scan here in Pensacola. <br />
Please be in prayer for Brian the entire day tomorrow. It's going to be a long one. He may not eat after 4 AM. He may not have anything to drink after 10 AM. He may not take his lunch time DDAVP for his Diabetes Insipidis. We'll see how that goes. We check in at the hospital at noon. They inject him with the dye at one, then I believe his procedure is at 2. We were told the PET scan could be anywhere from an 1-2 hours. By the time he wakes up and recovers from sedation it will have been almost 24 hours since he will have eaten last. My mama's heart was so upset about that. The nurse's response to me was that I should wake him up at 3 AM and feed him breakfast. I'm just going to end this paragraph right there. I think you can tell from my tone I am not happy about it.<br />
Here are some pictures from the last couple of weeks. It's our evidence that we have been BUSY these last couple of weeks.<br />
Two weeks ago today Brian had his stitches from his biopsy removed from his head. He had two sites as two lesions were removed. One to biopsy and one for research. Fred, myself and Brian are all a part of some research that Dr. McClain's is doing for Histiocytosis. <br />
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Brian informed me that I was wrong and it did hurt worse than the biopsy. He expressed his displeasure by shutting us all out. <br />
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At dinnertime he told Daddy that Mommy lied. Brian and Daddy talked as
Daddy has also had stitches in his head. They both agreed that those of
us that haven't had it done should not comment on the level of pain. :)<br />
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On Wednesday of that same week we went to doctors visit number 2 for the week. This visit was just a regular quarterly visit with Brian's endocrinologist. It went well.<br />
Brian still enjoys pressing the hand near the elevator. He has grown a lot over the last four years. Some people have adorable growth charts on their walls, others have a door frame, we have the hand button next to the elevator on our way to chemo. <br />
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<tr><td class="tr-caption" style="text-align: center;">2013</td></tr>
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A little flash back...<br />
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<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-3kN55xbexFs/Um5sR3XoThI/AAAAAAAAJW8/eTUPZyLETEw/s1600/1+b+hand+2009.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="http://4.bp.blogspot.com/-3kN55xbexFs/Um5sR3XoThI/AAAAAAAAJW8/eTUPZyLETEw/s400/1+b+hand+2009.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">2009</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">2010</td><td class="tr-caption" style="text-align: center;"></td></tr>
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and for some reason I cannot find a 2011 and a 2012 picture near the hand. I know we have them, I'm just not sure where on my unorganized picture files on my desktop. So, instead here's a cute one I found while searching for a 2011 and 2012 hand picture. It's too cute. I had to share it. Here's a picture of Brian and William from 2008. They were riding on Thomas the Tank Engine. <br />
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Alrighty, back to 2013...<br />
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Our kids know the drill. They do such at great job at all of Brian's appointments and treatments. Here they are waiting quietly while Brian gets vitals. <br />
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The afternoon of Brian's endo appointment was quite exciting for our kiddos. Fred called and let me know that he and one of his plant guys found five kittens under one of their work trailers. We of course had to go down and see them. After a couple of days when they noticed that no mama was around we rescued the kitties. We couldn't keep them for several reasons, but they kids enjoyed the time they did have with the kittens.<br />
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<a href="http://3.bp.blogspot.com/-x68kAPSvGd0/Um50UADN3xI/AAAAAAAAJXg/xM5P0KVAw0w/s1600/1+cats.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="http://3.bp.blogspot.com/-x68kAPSvGd0/Um50UADN3xI/AAAAAAAAJXg/xM5P0KVAw0w/s400/1+cats.JPG" width="300" /></a></div>
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The weekend after the great kitty rescue (they are now at their adoptive homes) we went to the pumpkin patch with some friends from church. We had a great time. <br />
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Fred happens to be the world's best pumpkin carver. He never disappoints. Here's our 2013 pumpkin choices: a ballerina, an airplane, Batman and Robin, & Rapunzel <br />
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After our pumpkin patch weekend, we started the next week (last week, Monday Oct. 21) saying goodbye to Daddy as he headed out of town for four days for work. We stayed busy with Tumbling Tuesday...<br />
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a field trip to the Planetarium at Pensacola Christian College...<br />
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texting Daddy pictures of ourselves...<br />
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and snuggling Daddy when he got to come home one day early because bad weather canceled his fishing trip...<br />
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Throw in a couple more doctors appointments, homeschooling and keeping a house running with clean laundry and meals, and you have our last two weeks. We have stayed very busy and we are adjusting to Brian being on chemo again. He isn't getting sick, but he gets very emotional and tired. He was proud this past Thursday to show off to some friends that he could swallow all six chemo pills at one time.<br />
We are PRAYING that the PET scan does not reveal that any changes need to be made to Brian's chemo meds. His other options are all infusions. That would require him getting another port implanted. We do not want that. We are praying that he can stay on the oral chemo. Thank you for your love and support for our family. We appreciate the many believers that are lifting our family up in prayer.<br />
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<tr><td class="tr-caption" style="text-align: center;">Here is some cute art work Brian drew during church. Makes my heart smile. </td></tr>
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"Shout for joy, you heavens; rejoice, you earth; burst into song, O mountains! For the Lord comforts his people and will have compassion on them in their suffering." <br />
<i>-Isaiah 49:13</i>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-703979129638546952.post-71707078501463980262013-10-09T12:32:00.000-05:002013-10-09T12:40:22.306-05:00Our Trip in Pictures <div class="separator" style="clear: both; text-align: center;">
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Our hotel was across the street from Texas Children's hospital. It was SOOO nice to be able to walk over to hospital. We sat outside of the Starbucks by our hotel and ate breakfast. The kids enjoyed the busy downtown Houston street. </div>
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Brian's first appointment was meeting with a couple of dermatologists to look over his skin. The waiting area had a mirrored room the kids enjoyed. <br />
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After meeting with the dermatology we went back out to the waiting room to wait for Brian to be called back for his biopsy. He did so amazing through the entire biopsy that the nurse handed Brian two fistfuls of treats and toys. He was quite proud. He didn't even realize he had stitches in his head. <br />
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<tr><td class="tr-caption" style="text-align: center;">The eyeball bouncy ball was a favorite.</td></tr>
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The appointment with Dr. McClain was next. Brian gave enough blood to drain his body. Obviously, not really, but it was a lot. He's a trooper!<br />
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When Dr. McClain came in the room he asked Brian several questions then decided we needed to go straight down to radiology and get some X-rays. There were some technical issues with the computer system and perhaps they had changed some codes for ordering specific images (without telling the doctors) so we sat in the room for quite some time watching Dr. McClain try to figure out how to order what he wanted to be done. Fred and I chuckled because Dr. McClain ended up writing what he wanted on a blank sheet of paper and signed it. He included his pager number and told us to head downstairs. In the meantime, Brian was getting restless so I gave him my phone. He took several pictures.<br />
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<tr><td class="tr-caption" style="text-align: center;">The view from the 14th floor.</td></tr>
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We got down to radiology and changed Brian into his gown. There was a waiting room that looked like a dressing room in a department store. Brian was goofing off and managed to run straight into a wall and bust his lip. He was upset and just wanted to get out of there. Since the day was almost over (by this time it was well after 4) and most people had cleared out, I let Brian come peek at his siblings through the glass. They were in the main lobby waiting room for the entire eighth floor. Right about that time it was Brian's turn to go back for imaging. <br />
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Again, Brian did an impressive job. We were in and out and headed back upstairs to see Dr. McClain by 5:15-5:30 PM. By this time all the office staff was out of the office. Fred flagged someone down and told them we were told to come back upstairs and see Dr. McClain. We waited in the waiting room for a few moments and the kids were totally restless by this point. I believe Brian began milking the Winnie the Pooh cow. You can tell by the decorations that we were in Texas. :-)<br />
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Dr. McClain came out and said that the report from the X-rays were not in yet (probably because it was after hours) but that from what he could see it looked good. Fred and I were a little confused and said, "Well, that's great, but what's on his head...we thought it was LCH again? What's going on?"<br />
Dr. McClain then casually stated, "Oh, yeah. I'm 100% confident that it's LCH. He'll be on chemo for six months for that...I was just talking about the bone!! As far as I can tell LCH is not in the bone right now."<br />
Picking up on our confusion and shock, Dr. McClain took us back into a room and talked with us for a little bit longer. He answered our questions, but we were so stunned that we didn't think of some of our questions until after things had processed later that evening. It was about that time that Brian's head was no longer numb and he started complaining about it itching. He got really clingy and fussy. We took the kids to the pool for a bit, but Brian couldn't get his head wet. The evening was kinda stressful as we juggled talking through everything, trying to accommodate Brian, and letting the other three burn off their pent up energy. I (Carrie) also started to feel poorly and notice a familiar rash I had earlier in the year. Yes, welcome back Shingles. The shingles virus lays dormant in your body after you've had chicken pox. I laugh because the doctor told me that it can be "brought back up" by stress.Yes, we've been <i>VERY </i>stressed the last 12 days. (I started the medicine for shingles last night and it makes me sick and dizzy. Hopefully I will be over shingles soon.) Anyway, back to Brian, Dr. McClain told us that Brian should have a PET scan soon and in April '14 a new MRI. It's really too soon to do another MRI and notice the LCH involvement in the Central Nervous System if it's there. He really needs a good year in between the two images as things change so slowly. <br />
Brian will begin his new oral chemo this week. He will need blood work every two weeks to check counts and liver function. While we are SOOO thankful that Brian doesn't need a new port and can take his six chemo pills one day a week for six months from home, we are ready to identify where LCH is active in his body and deal with it once and for all!!! We have suspicions that it is in the Central Nervous System. April of 2014 will be a telling time as we will be able to compare the two MRI images.<br />
Please keep Brian in your prayers as he begins his next chemo phase. We will keep you updated. Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-703979129638546952.post-23427306040507486882013-10-07T20:54:00.000-05:002013-10-07T20:58:42.295-05:00More Chemo for BrianWe are in Houston at Texas Children's Hospital. Brian had an appointment at 1 today to biopsy his scalp. Things were running a little behind schedule and we didn't get up to the 14th floor to see Dr. McClain until a little after 3. After talking with him for a little bit he sent us straight down to radiology to get some scans. When the x-rays were complete we headed back up to the 14th floor to talk to Dr. McClain again. At this point it was after 5:00 and the office staff had gone home. Dr. McClain talked with us more and we discovered Brian will need six more months of chemo. We are VERY thankful that he is able to do this specific chemo drug orally rather than an infusion. That means no port which is an answer to prayer, but Brian is going to require chemo that is known to lower counts. I will update more thoroughly and add pictures when we get home, but I know several of you are anxiously waiting for an update. Thank you for your faithful prayers.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-703979129638546952.post-57716659398112623172013-10-02T05:49:00.000-05:002013-10-09T11:12:24.530-05:00Prayers Appreciated Several weeks ago we found some bumps on Brian's scalp. Immediately we called the oncologist and asked to be seen. His nurse let us know that the he said we didn't need to come in, just to watch the scalp and he would see Brian at next month's appointment. Fast forward a couple of weeks and we take Brian to a well child appointment with our pediatrician, Dr. Foland. We scheduled it a couple of months ago when we decided that since Brian was done with chemo and we were moving into a more normal time period that it was time to get him back established with her. At the beginning of Brian's diagnosis she had sweetly said that if it helps Brian to have one less doctors appointment then don't bother bringing him in for well child checks. Other than the appointment back in July for Brian's eczema right before he had his port removed, he hadn't been to the Pediatrician for an appointment <i>about him</i> in four years. Last Wednesday at the well child appointment she noticed the bumps and was obviously as concerned as we were. She called the dermatologist that did Brian's biopsies both four and three years ago and set up an appointment to get another biopsy. We were devastated because we already knew what all this meant.<br />
This past Monday we took Brian to see Dr. Watson for his biopsy. When asked about Brian we told her about his eczema that wasn't really going away. She could see it and knew right away that the scalp and the "eczema" were both Histio. Dr. Watson didn't even biopsy the scalp. She was so positive it is LCH again. Her recommendation, and our desire, is to go straight to Texas Children's and see Dr. McClain. We have an appointment in Texas for next Monday, but should hear back today if we need to plan to stay for multiple days to run more tests and scans. We will keep you updated as we know more. Right now please pray specifically that maybe, just maybe we can treat Brian with something other than chemo. He is so sad at the thought of another port and more chemo. <i>It's been a very long four years. </i><br />
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Last Wednesday when the pediatrician confirmed what we had suspected, Fred and I were very upset. That evening at our church prayer and praise every song was speaking to our hurting hearts. I talked with a sweet friend, who is also dealing with her own illness and possible additional chemo, about the song All Who Are Thirsty. The chorus <i>Come, Lord Jesus, come</i> is the prayer of our heart. We have a longing and desire for our Savior that deepens with each step we take in this life. Psalm 42 is on our hearts. We do not question His love for us or His faithfulness to us, if anything it is more confirmed in our life. But our hearts still hurt for Brian. <br />
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<i> </i>Majority of our church was in tears last Wednesday evening. We have a lot of illness and pain right now. Not just in our family, but there are several families in our church with heavy burdens right now. The tears shed with our family encourage us as we know we are not alone. God reminds us of HIS presence through the body of Christ. <br />
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Our sweet small group on Sunday evening spent time in prayer for all the things going on in the lives of our church family. The children were asked to write a prayer or a praise. Brian drew this picture:<br />
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<i> </i>It's a picture of himself on a hospital bed with a doctor beside him holding his port. He said it's a praise that the doctor took his port out and he doesn't want another one. As you can imagine several of us were in tears. It's been a difficult few days and we imagine the coming days will also be a challenge. We plan on having EVERYTHING that requires the eyes of the doctor to be done in Texas. We want Dr. McClain to be the one looking at Brian and making decisions. We know how hard and how costly this experience was here in Pensacola with the hospital down the road. We get overwhelmed at the thought of going through all of it again and in Texas. One day at a time. HIS mercies are new every morning. We appreciate the prayers. Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-703979129638546952.post-24355165130802107872013-09-11T08:32:00.000-05:002013-10-02T08:33:10.848-05:00He Has An Extra Curricular Activity!!!Many of you may remember me making mention of the extra curricular activities in our house. The conversation went something like this, "Ansley has dance and piano, William has guitar and piano, Olivia has dance and piano...and I have chemo!!"<br />
Yes, Brian would happily shout that he "gets to do chemo". He just hasn't had the energy or desire to do anything. Legos and video games have been his thing. Well, getting that port out has been a life changer for Brian. He is THRILLED to run around and be rough and tumble with his friends.<br />
On Tuesday evenings Olivia has a dance class from 4-5. At the end of the class the dance teacher instructed the students staying for the tumbling class to sit against the wall. Olivia sweetly asked if she could stay because she has wanted to take gymnastics for quite some time. We haven't looked into it too seriously because we have not been able to add one more thing to our schedule. I am very protective of our time and do not over schedule us outside of our home. It's something I have had to do because of Brian's illness, but now I treasure it. Anyway, I got permission for Olivia to try the class out. While standing outside watching through the window I noticed a little boy in the class. William and Brian expressed interest and the one little boy's mom overheard. She looked at me and said, "Oh please do let them go in. My son would love to have more little boys in the class." I asked for permission to send my boys in. It was an instant hit. The teacher is a male, coach Dale. Our boys LOVED every second of the class, so much so that they have renamed our Tuesdays. Tuesday is our Classical Conversations day and it has been the highlight of our week for years. Apparently it has moved to the back burner because our three tumbling kiddos now refer to Tuesday's as our <i>Tumbling Tuesdays</i>.<br />
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The class will not be this large. Apparently several parents heard "try it out" and sent their kids in there. We are thankful that our three got to slide on in and be a part of this class. We LOVE <i>In His Steps. </i>It's not just a studio were they learn some music, dance and tumbling, but it is a ministry. (We do all of our extra curricular activities at IHS.) The teachers are pouring their hearts and their love for the Lord into our children. We love that our boys have another positive male role model. Coach Dale is also a pastor. :) <br />
So, <i>hooray!</i> for Brian being able to say he does something other than chemo!!! Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-703979129638546952.post-60940777861008832562013-08-21T07:03:00.000-05:002013-10-02T07:07:09.051-05:00Back to School 2013<div class="separator" style="clear: both; text-align: center;">
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Here's our crew posing for our back to school 2013 picture.<br />
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Ansley 4th grade, William 2nd grade, Brian 1st grade and Olivia Kindergarten<br />
Both of our boys have summer birthday's and we chose to have them be the oldest in their class rather than the youngest. I polled no less than 38 mama's of older boys and THEY ALL said the exact same thing...give your boy the extra year. We've never regretted that decision. I often get asked why it matters if we homeschool. It matters because we like to keep our children in line with tradition schools if for some reason they should have to be enrolled. We have learned from our experience with Brian's illness that you do not know what the future holds. <br />
Our kids get excited for <i>back to school</i> time. Yes, we homeschool, but we are a part of a community that meets once a week. If you ask our kids Tuesday's are our "<i>real school</i>" days.They miss our Classical Conversations community during the summer and wish we met year round. We do school year round at home. Because of life the last four years we really can't take a traditional summer break. This past year we did our school week along with Brian's chemo schedule. Three weeks of school and then one week off during the chemo week. It works for us, but I must say<i> I </i>get burn out and want to take a traditional summer break. So even though we school during the summer, it is very relaxed. Here you can see Brian working on some math during the summer. <br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-703979129638546952.post-73100557247231844332013-08-12T07:11:00.000-05:002013-10-02T07:12:03.433-05:00Best Buddies <div class="separator" style="clear: both; text-align: center;">
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William and Brian are best buddies. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-703979129638546952.post-41296335793298504262013-08-10T19:30:00.000-05:002013-10-02T09:19:04.498-05:00Brian is SEVEN <div class="separator" style="clear: both; text-align: center;">
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HAPPY BIRTHDAY BRIAN!!! Seven years old! Brian got what he wanted for his birthday this year. Twelve days ago he got his port removed!!! YAY for no more chemo!!!! <br /><div class="separator" style="clear: both; text-align: center;">
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We didn't plan a birthday party this year because we plan on having a HUGE no more chemo party. We plan to invite just about everybody we have ever met and celebrate the end of four years of chemotherapy. That's coming, but for today...HAPPY SEVENTH BIRTHDAY BRIAN ROBERT!! </div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-703979129638546952.post-37098791650263144932013-08-02T14:12:00.003-05:002013-10-02T09:04:01.822-05:00The port is OUT!!!! Monday Brian had his port removed. He is doing well and we are shifting gears to post chemo schedule. He still meets with his oncologist monthly for a few more months. Then we will move to every six weeks, then every other month, then every three months, then every six months. In five years if everything continues to go well Brian will be considered in remission. <br />
One thing that was not pleasant at this past appointment was discussing all the things to look for in Brian as we move forward. Secondary Leukemia and Wilms Tumors are possibilities based on the drugs he has received and the length of time he was on chemo. He has a road map for the next five years, much like he did on treatment. But, instead of what drugs he is to receive when and what dose, this road map says what testing he is to receive as we monitor him for chemo side effects. <br />
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We are celebrating that he is done with chemo and his port has been removed but we are still praying constantly and trusting in the Lord for Brian's future. <br />
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I<strike> will upload some pictures from Monday's surgery day and a few from Brian's appointment with Dr. Schwartz on Wednesday</strike>. (UPDATE: pictures below) <strike></strike>For right now, I want to share this picture. Brian drew it about six months ago and I meant to post it but never got around to it. It's a tear jerker. Brian was just doodling one day while I was working on some Math with William or Ansley. Here's his picture:<br />
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His little mind was thinking about the hospital and being in the ER. He was remembering a terrible night when he was super upset and we actually left the ER AMA (against medical advice). Every so often he will climb into my lap and say that he is scared of chemo. It makes me sad to see chemo in his doodling but, it's a good way for him to express what he is thinking and feeling and for us to be able to communicate and reassure him. FYI- if you aren't familiar with this picture it is the pain scale hanging on the wall in hospitals. It actually goes from one to ten. The night we left the ER Brian was crying and in pain (the nurse didn't know how to access a port but attempted...twice!) Anyway, I made them leave the room and as I was consoling Brian, he saw the sign and sadly cried, "Mommy, I'm a ten." <br />
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Last week I had a slight freak out and rushed Brian to the pediatrician. He hasn't seen her for an appointment about himself in almost four years. But I wasn't getting answers from the oncologist and I just wanted more eyes to look at Brian and reassure me that what was going on was in fact minor. I didn't want to get his port removed if he was going to need it a few months later. Brian has had what appears to be eczema on his face for seven or eight months. The steroid cream that Dr. Brown gave us back in January bleached Brian's face and didn't really heal the break out. I refused to use it after two months of it not working. Brian also said it burned really badly. I wanted our wonderful pediatrician to look at it and confirm that it was in fact eczema and not LCH. She said lots of people are experiencing eczema issues right now and to try a couple of over the counter things we hadn't tried first. She also gave me a prescription to try if the over the counter stuff didn't work. She totally understood my stress given the last four years of our lives. I LOVE our pediatrician. So, we moved forward with the port removal. <br />
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Here are some pictures about Brian's port removal:<br />
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For our Sunday night small group at church the kids were asked to write a prayer request or praise. This was Brian's request the night before his port removal surgery. We pray that it is out and he doesn't ever need another port and more chemo.<br />
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Monday morning, Brian was a little nervous. There was some major miscommunication and unnecessary drama, but long story short, Brian was NOT on the books for port removal surgery. The nurse practitioner with peds surgery was awesome and she sweetly called the surgeon to squeeze Brian in at the end of the day. It was a LONG day and poor Brian had lots of time to be anxious. <br />
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One last picture of Brian with his second port. Implanted September 24, 2010, removed July 29, 2013<br />
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<tr><td class="tr-caption" style="text-align: center;">We are praying that this is the end of surgeries and hospitals for our Brian.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Being wheeled away from us...</td></tr>
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Here's Brian a week or so after surgery. For some reason his scar is twice the size of his previous three port related surgeries. <br />
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-703979129638546952.post-88879537463484585472013-07-06T13:05:00.000-05:002013-10-02T09:59:09.168-05:00Update and Scans <br />
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<span style="background-color: rgba(255, 255, 255, 0);">Brian had X-rays yesterday to take a peek at his bones. If all is clear then he will be approved to have his port removed. We are obviously excited, but ask for continued prayers. Brian has not received chemotherapy treatment since the first week of April (2013). We believe that he is doing well. He looks great and has tons of little boy energy. That's something he hasn't had much of the last four years! So far, no new LCH symptoms. We we told by Dr. McClain that it would be a less than 20% chance of a recurrence. If LCH is active and going to do more damage it would be in the bone. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"> Brian's diabetes insipidus is being manage with several pills multiple times a day, and he is champ at swallowing his DDAVP. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"> In April of 2010 Brian had his first port removed after six and a half months of chemo. His first couple sets of scans and bloodwork looked good before he started showing symptoms again. That is when in September of 2010 he had his second, and current, port implanted. While we are thrilled to get it out of him, we remember(and so does he) Brian asking,"just two ports, right, Mommy and Daddy?" So getting his port removed is coupled with <i>both excitement and some anxiety</i>. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"> Please keep our family in your prayers. It means so much to know that we have an army of believers supporting us and standing with us! </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"> Love, the Schreibers</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">Here is a cute picture of the kids. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><br />And some pictures of Brian's X-rays</span><br />
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<tr><td class="tr-caption" style="text-align: center;">then he moves to scared and clingly. </td></tr>
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They are always so great to let Brian peek at his bones.<br />
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His cute little hands<br />
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<tr><td class="tr-caption" style="text-align: center;">his sweet little feet</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">In this one you can see his port line </td></tr>
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<span id="role_document" style="background-color: rgba(255, 255, 255, 0);">The hallway from the waiting room to the imaging room has art from students at local schools. Brian likes these monsters the best. He wanted pictures with his favorites. We are hoping and praying that our trips down this hall are dwindling down. </span></div>
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Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-703979129638546952.post-77822652481896974612013-05-03T14:36:00.001-05:002013-05-25T06:06:25.056-05:00And we've heard...We heard from Brian's doctor in Texas. A week ago we got an e-mail from Dr. McClain that said the MRI was good but that he was out of town and wanted to look back at his notes before answering any of our questions. Our immediate response was an overwhelming emotion of HALLELUJAH! Brian's done!!! Then it shifted to wait a minute... hold everything! What if the MRI being good means that he can read it, not that it was good news but a good image to work with?! Over the weekend we waited to hear back from the doctor on Monday as he said he would respond once he was back in office. That weekend (last weekend) my Aunt Carol passed away. On Monday we were headed over to Panama City to be with family and attend her funeral. We were on the edge of our seats all weekend so on Monday afternoon we e-mailed Dr. McClain. He responded pretty quickly. Because of the funeral and traveling out of town, to immediately having a doctors appointment here at Sacred Heart, updating the blog kinda got left out. I am so sorry. <br />
<br />
Here is what we heard from Doctor McClain:<br />
<br />
Here is my plan: I recommend stopping treatment now, but wait 3 months before
taking the port out. He should have office visits with a CBC and liver function
tests every 3 months for one year, every 6 months for 2 years, then annually to
assess his neurological function and monitor for any evidence of growth delay,
hypothyroidism, hyogonadism, or hypoadrenalism. An MRI of the brain should be
done annually which we can schedule the day ahead of, or same day of your
visit.<br />
Sincerely,<br />
Ken McClain M.D. <br />
<br />
We take that as good news in that Brian is currently not taking chemo. However, because we have to leave the port in he must have it flushed every month. We did that late Wednesday afternoon and it was horrible. Brian DOES NOT understand that he is not getting chemo. If you have to access his port, he calls it chemo. He put up quite a fight and wailed and screamed. We get to do that a couple more times, once in June and once in July. Then at the beginning of August we head back to Texas for Brian to see Dr McClain and get assessed. If all is still good we will hopefully be permitted to take his port out. If not, we will cross that bridge when we get to it. We understand the delay in removing the port. Given Brian's history it would be unwise to remove it so early "off treatment". But we are SO READY to get it out of Brian's chest. <br />
Please pray that the next three months (well, and forever...) will be without LCH activity. That Brian's disease is resolved and he can live a "normal" childhood. I say normal with quotes because you saw the above. Even if everything goes great he will still frequent doctors offices, labs, radiology, etc. By the time he is done with this time table, again if all things go well, he will be over ten years old. It was one month after his third birthday that he was diagnosed. He doesn't remember anything other than chemo, ports, needles, bloodwork, scans, etc. <br />
I am not sure if I have mentioned this before or not, but not too long ago we were all chatting about extra curricular activities. The conversation went something like this, "Ansley has piano and dance; William has guitar and piano; Olivia has dance..." and then Brian piped up with, <em>"and I have chemo!"</em> <br />
That completely ripped our parents hearts out. Over the years we have repeatedly asked Brian if there was something he was interested in learning or doing. There hasn't been. He either hasn't been interested or hasn't had the energy. Legos have kinda been his happy place. We are hoping that in three months time that Brian will be able to have his port removed. Because that will feel like a real beginning of the end. :-) <br />
Thank you for continuing to pray for Brian and our family.<br />
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As of yesterday, Brian is now missing both of his front teeth. He is so adorable! Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-703979129638546952.post-26576086116882137072013-04-03T12:50:00.004-05:002013-04-03T12:50:55.372-05:00Back to TexasWe're heading back to Texas.<br />
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This week is a chemo week but we are headed back to Texas on April 15th. Brian will have an MRI at Texas Children's on April 16th. Please be in prayer for our family as we are really hoping that Brian will not need more chemo. We found out on Monday that this week is the last week of treatment for the current protocol. So, <em>drum roll please</em>... if Brian doesn't require more treatment (to be determined from the MRI done in Texas) than he will be FINISHED with chemo by the end of this week. We are really hopeful and are praying constantly that our sweet boy can finally be done with chemotherapy after a very long three and half years of treatment. <br />
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Here's this month's chemo calendar. <br />
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<tr><td class="tr-caption" style="text-align: center;">The birthday cake on April 15th is for my b-day. (Carrie) My gift this year is that I get to go the DMV and renew my drivers license that will expires on the 15th. I certainly hope they don't make me take that written exam about traffic laws and how many car lengths you should be from the car in front of you. It's been almost 20 years since I have read about all that. :-) </td></tr>
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Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-703979129638546952.post-42510222823619641902013-03-17T14:20:00.001-05:002013-04-03T12:56:04.966-05:00Back from Texas We had such a wonderful trip to Texas and thank you all for your prayers. We LOVE LOVE LOVE Dr. McClain. He was so patient with Brian and super knowledgeable. It's amazing, in the last three and a half years of doing this Fred and I have seen that we typically have to direct the doctor, point out certain things and ask LOTS of questions. With Dr. McClain, we went into the room and didn't have to open our mouths and we were able to tell that this man <em>KNOWS</em> what he is doing. He asked us questions and told us what we probably have experienced and what we can expect. <em>He was right on with everything. </em>His communication with us gave us a huge sense of comfort and peace. Dr. McClain did some clinical evaluation of Brian that assessed what Fred and I were most concerned about, and that is neurological involvement. From that clinical assessment it appears as if Brian does have some neurological involvement, but Dr. McClain commented that he really needed to see an MRI of Brian's brain. All of the scans that were sent to Dr. McClain were unreadable. He described them as an over exposed photo. We had CD's of all of Brian's MRI's, including the one from last Friday (March 8th), and we gave those to Dr. McClain. We are hoping it is a better quality than the ones that were sent to him from Sacred Heart. Dr. McClain wasn't sure if there was some technical problem in the sending of the information, that somehow things went haywire and messed up the imaging, or if the imagining that he was seeing was really the MRI imaging that Sacred Heart had taken. We are praying that the CD we gave him will be readable and not "an over exposed photo". <br />
<br />
So, here's where we are:<br />
We are waiting this week to hear back from Dr. McClain. We will either hear that<strong> a.)</strong> We need more imaging and to get a new MRI taken somewhere else<strong> b.)</strong> all is looking good and Brian can complete this protocol and be done with chemo <em>(this protocol that Brian is currently on will complete in a couple of months and was <a href="http://brianslch.blogspot.com/2012/03/everything-changes.html" target="_blank">suggested by Dr. McClain</a> last March when Brian was diagnosed with Diabetes Insipidus.) </em>or <strong>c.)</strong> Brian's MRI revealed the need for more chemo and it will be a higher dose of Cytarabine (also known as Ara-C) and will extend treatment for six more months. <br />
<br />
We are assuming that Brian will probably end up with more chemo and the higher dose of Ara-C based off what we saw with Dr. McClain in his office. However, we are hopeful that Brian will be done with chemo after this protocol in two months. We would really appreciate your prayers for Brian during this time. We kinda feel like anyway we go, even if he has a few more months of chemo, that we see the finish line. And for that, we are very excited. <br />
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We are so thrilled with Dr. McClain and the work he has done for families like ours with a little one with LCH. Brian has now been added to a study Dr. McClain is doing, and Fred and I even gave samples and filled out a questionnaire. We are happy to help with the research and treatment of LCH in any way we can.<br />
<br />
Dr. McClain is so knowledgeable that there is just a huge relief in knowing that Brian is under his care. The research and treatment of LCH is <em>what he does</em>. It's not just something he may have heard about in medical school years ago, but he has spent his life in research and treatment of LCH. HE KNOWS ALL ABOUT IT. (I cannot stress this enough. We've had several frustrating times as parents trying to convince our local doctors to hear us out, only to be given the response of "that's not related to LCH", when we <em>*know*</em> things are not right. To walk into Dr. McClain's office and get validated that what we experienced IS in fact LCH was a huge relief. Not because we want to be right, but because we can RELAX and know that our little boy is getting the best care possible for his disease.) This disease is so rare and some oncologists may never treat a child with LCH, yet Dr. McClain sees hundreds. People from all over the nation and even the world, travel to Houston for their medical expertise. We were told that a great number of people go to Texas Children's Hospital just to see Dr. McClain. We really wish that we could go back to three and half years ago when Brian was first diagnosed and have gone immediately to Dr. McClain, but we can't. Sitting and thinking about the what if's will not change anything. We are thankful that we are with Dr. McClain now. We feel so blessed that we are able to call Dr. McClain Brian's doctor.<br />
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Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-703979129638546952.post-15187717023546370712013-03-14T07:06:00.002-05:002013-03-14T07:12:08.356-05:00Texas Bound! We are headed to Houston today to see Dr. Kenneth McClain. Brian's appointment is tomorrow morning. We picked up the CD of last weeks imaging (from his MRI of the brain) and we are ready!! <br />
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Prayers appreciated. We will keep you updated. Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-703979129638546952.post-68321377453225188622013-03-08T21:00:00.000-06:002013-03-17T14:46:08.992-05:00MRI Brian had an MRI today. It was scheduled for 11:00 AM with check in at 10:00 AM. We went to chemo at 9:00 AM, then headed to check in with MRI. It was horrible scheduling for a child because Brian hadn't eaten since dinner the night before. (He can't eat or drink because he has to do his MRI's with sedation). Of course they were running an hour and a half behind schedule so the poor boy had to sit hungry and thirsty until we went back got checked in, and got his versed at around noon.<br />
<br />
Brian had a loose tooth that was ready to come out and it had to be removed before they could intubate him. The anesthesiologist said she would pull it after they gave Brian Propofol and save the tooth for us. (The anesthesiologist was super great with Brian when we checked in with her and she gave him Versed before taking him back like we requested. She was very patient and engaged Brian in conversation on his level. She even let him play Angry Birds on her phone while we waited for the Versed.)<br />
When we were taken to Brian's bed in recovery he woke up vomiting blood. It was very upsetting, but after a couple of minutes the nurse reminded us that he had a tooth taken out. It must have bled down his throat during the procedure. Since they had already de-accessed his port we were unable to get him some anti nausea medicine until he was awake enough to swallow a pill of Zofran. Brian already being de-accessed is a result of a whole other story that I will not get into on the blog. Let's just summarize it by saying that in the past I have de-accessed Brian's port in recovery, and Fred and I have an AMA (leaving the ER <strong>A</strong>gainst <strong>M</strong>edical <strong>A</strong>dvice) and a formal complaint under our belt from a recent ER experience at Sacred. We will not tolerate poor care for little Brian. Pretty sure the words we exchanged with the MRI check in nurse ruffled her feathers and she made sure he was de-accessed before we got back there. STRESS. Poor Brian continued to throw up even after we got home. He was fine by bedtime, but it is so sad to see our sweet Brian go through so much unnecessary drama. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-703979129638546952.post-18380628915747253402013-02-22T08:31:00.000-06:002013-02-22T09:14:22.881-06:00Update 2-22-13WOW, I have really neglected our blog. I am so sorry. Some of you receive e-mail updates from my dad so you are in the loop, but I will go ahead and give a quick recap of the last month. <br />
<br />
Several weeks ago I found out I had shingles. I am thankful that it was a very mild case. I was told it can be brought on by stress. We live at "stressed".<strong> :)</strong> Fred and I often talk about what life would look like if Brian didn't have LCH. We<em> cannot</em> imagine. We cannot even comprehend what life would be like without chemo, Diabetes Insipidus, blood work, MRI's, doctors appointments, several pills a day and several prescriptions a month...<br />
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I am thankful that it was a very mild case of shingles. <br />
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Brian's last treatment week was delayed one week because of his ANC being low. It stinks that his counts were low, but it was kinda an answer to Brian's prayer. God shows us HIS love for us all the time. Brian's treatment week was scheduled the week of Olivia's birthday. He was very upset about "missing" her birthday. When he has his port accessed he doesn't like to go anywhere or do anything. We stay at home and leave only to go to the hospital for treatment. Olivia's birthday was a Tuesday and while we planned her party with her friends for the following Saturday, Brian was very upset about being accessed on her actual birthday. With the low ANC, chemo was delayed and Brian was able to enjoy the birthday festivities port needle free. Brian was glad and this mama smiled at just another way God shows us that HE cares for us. <br />
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Brian's chemo week was February 4-8th. Monday and Tuesday were not good days. Brian got very upset when we had to access his port on Monday. It was horrible and both Fred and I were spent when it was all over. Tuesday Brian got sick. Not sure what it is about magical day two, but Brian always gets sick on Tuesday. Uncle James and Aunt Kasy were in town all week so Aunt Kasy went to chemo with us on Thursday. Brian really enjoys having his entourage of siblings. He prefers it and doesn't want to go to an appointment without them. Having Aunt Kasy come along was fun for all the kids. They enjoyed telling her everything she needs to know about chemo appointments. <br />
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The Friday before treatment week we went back to the lab to get Brian's ANC checked. <br />
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<tr><td class="tr-caption" style="text-align: center;">Brian upset at the lab. He didn't want to get his blood work done.</td></tr>
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After school on Monday we went to lunch at Chick Fil A with Uncle James and Aunt Kasy before we headed to chemo and they headed to the Navy Base for the week. <br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-XemIEOq0Nss/USd-5dKR5MI/AAAAAAAAIzI/lHwr2A3zxmQ/s1600/kasy.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="http://3.bp.blogspot.com/-XemIEOq0Nss/USd-5dKR5MI/AAAAAAAAIzI/lHwr2A3zxmQ/s400/kasy.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The girls with Aunt Kasy. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The boys with Uncle James.</td></tr>
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The pictures are out of order as Tuesday was PJ day because Brian didn't feel well. But, here are some pictures from treatment. <br />
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On Thursday we also finished signing all the releases and filling out all the paperwork for Brian's referral to Texas Children's in Houston to see <a href="http://txch.org/for-professionals/our-faculty/kenneth-mcclain-md-phd/" target="_blank">Dr. Kenneth McClain</a>. We don't have an appointment date yet, but when we do we will let you know. <br />
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Brian has to have another MRI in the next couple of weeks and his next chemo week is scheduled for March 4-8th. Please be in prayer for him as he doesn't like MRI's. A couple of days ago I overheard William and Brian talking to each other. They were playing "MRI." Brian was telling William all about it and explaining that "when I wake up my legs don't work for a while." <br />
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It makes this mama's heart sad to Brian's voice get shaky and scared when he tells William about a MRI. I am thankful that I was able to overhear the private moment between brothers. It lets us know what's going on inside of Brian and we can better help him process and deal with what is in front of him and what he has already endured the last three and a half years. <br />
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It has been three and a half years of battling LCH. It's been long and it's been taxing. We would change it in a heartbeat if we could, but we have seen how God has used it, and is still using it, for HIS glory and our good. We know that we are lifted up in prayer all over the world. It is such an encouragement to know that we are not alone and that other people care. The body of Christ has supported us physically as well. When our van needed more repairs, when our washing machine needed a part replaced, when I had shingles and was just exhausted, we received gifts from the Lucas family, the Wit family, and the G & J Hayes family and the Chocolate Circle Bible Study Group (headed up by K. DeVries). God provided through the generosity of others and we are so blessed. THANK YOU SO MUCH!!! <br />
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Several of you have asked us what we need and how can you help us. We never know quite how to answer that. We have never had to ask for anything, God always provides right when we need it. For example, The Wit family gave us some restaurant gift cards for Christmas. They were to be delivered by my sister. We just saw my sister for the first time since Thanksgiving at Olivia's birthday celebration. Had we received the gift cards at Christmas time we might have used them for a treat for family fun night or something like that. Instead, we received them when I had shingles. While the case of shingles was so very mild, the medicine I was taking made me so dizzy that I felt sick every time I took it. I was suppose to take it three times a day. The timing of receiving the gift cards was perfect. We were able to use the gift cards when we <em>needed</em> them. God is pretty amazing like that. Fred and I see it over and over again. <br />
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I do have an opportunity for a fundraiser that will directly help us out if anyone is interested. PLEASE DO NOT FEEL OBLIGATED. I tossed the idea of putting this on the blog around for quite some time. I don't want to come across as "give to us". The reason I put the last paragraph up was to show that we KNOW everything comes from God. HE provides. With that being said, a couple of my friends scolded me for not posting about the fundraiser. So, here it goes...<br />
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We are a part of a home school group, Classical Conversations. We LOVE it and cannot say enough wonderful things about our group. We meet on Monday's at a local church and the kids are each in a class. They get to do science projects, art projects, learn about the orchestra, classical music, timeline, history, math, Latin, science, English grammar, geography, etc. It is a non negotiable in our house. It gives me some accountability in our home school and keeps us on track. The kids LOVE it and we gain so much from being a part of this community. Just this year the kids have dissected owl pellets, drawn like El Greco and learned to play the tin whistle. All things I would not have done with just the five of us at home. There is a cost to be a part of the group. It covers registration, supply fees and tuition. Our community is currently doing a fundraiser to help each family raise money to cover their fees. So, the money we raise goes directly to my kids and my fees, not to the entire group. If you are interested you can purchase something from Mixed Bag Designs and 50% of your purchase goes directly to my kids. (If you are not local and you order online it's shipped to you and 40% of your purchase goes to my kids.) I am including a picture of the handout we received so you can follow those instructions if interested. If you have any further questions you can e-mail me. I cropped April Morgan's e-mail address off the flyer because I didn't want her to get a bunch of junk mail because I posted her address on the Internet.(She's the CC Director here in Pensacola)<br />
If you want to email me and don't know my e-mail address please post a comment on the blog and I will get with you. <br />
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Sorry, it was raining the day we got these and there is a smudge from a rain drop. The web address is <a href="http://www.mixedbagdesigns.com/">www.mixedbagdesigns.com</a> The referring participant's name to enter is <strong>SCHREIBER</strong><br />
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Thank you for your love to our family and constant prayers for Brian Robert. <br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-iXUcYn801-8/USd9slEiWeI/AAAAAAAAIyg/aVuPa7bVNM8/s1600/b+presentation+5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="http://2.bp.blogspot.com/-iXUcYn801-8/USd9slEiWeI/AAAAAAAAIyg/aVuPa7bVNM8/s400/b+presentation+5.jpg" width="400" /></a><br />
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<tr><td class="tr-caption" style="text-align: center;">Brian doing a presentation at school two weeks ago. <br />
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<tr><td style="text-align: center;"> <a href="http://2.bp.blogspot.com/-d8XuciDTCoI/USeLF_T8ZCI/AAAAAAAAIzY/hmZTjD6_feo/s1600/chemo+calendar+5.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="225" src="http://2.bp.blogspot.com/-d8XuciDTCoI/USeLF_T8ZCI/AAAAAAAAIzY/hmZTjD6_feo/s400/chemo+calendar+5.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"> chemo calendars </td></tr>
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