tag:blogger.com,1999:blog-79433632826694291912024-03-24T06:33:16.323-07:00A CERTAIN KIDNEYA CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.comBlogger50125tag:blogger.com,1999:blog-7943363282669429191.post-92229312848115917582023-10-09T13:14:00.004-07:002023-10-09T18:46:11.354-07:00THE COMEBACK KID<div class="separator" style="clear: both; text-align: center;"><span style="font-family: verdana; font-size: medium;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOBHLu3L77JXX6CpC_Y7x25xZ-Dzz-1xPtBrXCZ0bjNh7S7W8l9J8HRY20c2aLlTWXttejqfofSJSYew_iTooTyW4jSuekQXj7SuJ811BoapAvalAs7XaXoOYrdGpNfXDY_Yaey-n_etze99vsjWY2442zJ2iw1vJ6veLKdScJIPl9l8Gr1LPABsxWhh4/s2048/IMG_2288.jpg" style="font-family: -webkit-standard; margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1365" data-original-width="2048" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOBHLu3L77JXX6CpC_Y7x25xZ-Dzz-1xPtBrXCZ0bjNh7S7W8l9J8HRY20c2aLlTWXttejqfofSJSYew_iTooTyW4jSuekQXj7SuJ811BoapAvalAs7XaXoOYrdGpNfXDY_Yaey-n_etze99vsjWY2442zJ2iw1vJ6veLKdScJIPl9l8Gr1LPABsxWhh4/w400-h266/IMG_2288.jpg" width="400" /></a></span></div><div class="separator" style="clear: both; text-align: center;"><br /></div><span style="font-family: verdana; font-size: medium;">Two full months have passed since Jack went into remission for PTLD (post-transplant lymphoproliferative disorder), a type of lymphoma tied back to his anti-rejection medication for his transplanted kidney. In our rawness, we have unfurled and emerged slowly from our cocoon with more wisdom and discernment. We have been surrounded by great support that has allowed us to do so. My nervous system feels ready to digest and release which is why I come to this final post. </span><div><span style="font-family: verdana; font-size: medium;"><br /></span><div><div><span style="font-family: verdana; font-size: medium;"><span>Life expands and contracts - every cell, each breath, blink, beat of the heart and so on. For me, this pulse came to a near halt Dec 22nd, 2022. We learned a softball size mass was seated deeply in Jack's abdomen, wrapped around the vena cava and attached to his bowel. Awaiting results for his spinal tap and bone marrow biopsy, we were now pulling him off all anti-rejection medications that we had been dosing like clockwork for 16 years to protect his transplanted kidney. My cellular body and bones could not release the 8am and 8pm alarms for these meds. </span>The gravity of the situation, the multiple misdiagnoses, the miss on MRI 3 months prior and aggressive stage of cancer we landed in had left me paralyzed in grief and anger. Guilt settled in quite nicely afterwards. How dare I mourn my child, when he is still right here. How human of me. <br /><br /></span></div><div><span style="font-family: verdana; font-size: medium;">Jack chose to quietly embrace his diagnosis, carrying on with school until the day he lost his hair. Reality carved into our landscape more deeply and confidence waned for all of us, including his oncologist. "I feel like I'm letting you down, Jack" as she walked into the room after a pet scan in July. This was one of the most compassionate and gut-wrenching things I had to accept. We were not out of options yet, but dosing more of the same chemo did not make sense. Three surgeons had previously turned us down in December. The pedal was down full blast these weeks as we consulted with surgeons and experts around the country (Dana Farber, Mayo, and Harvard Medical) thanks to the most wondrous, generous humans. I had glimmers of hope and clear moments that felt like the universe had his back. The quiet rally for Jack was huge. The boundary of protection that our dear friends held us in is indescribable. The nourishment at our front door, the care for our home, the rides, the love bombs. I truly don't think words are sufficed here. </span></div><div><p><span style="font-family: verdana; font-size: medium;">On August 8, Jack unexpectedly came out of surgery and right into remission. We were fully prepped for more treatment after surgery and had stopped mentioning the other "C" word in our home, college.</span></p><p><span style="font-family: verdana; font-size: medium;">Grab a tissue now and take in more joy. Last Tuesday, Jack suited up for senior night and got back on the field (with his twin bro) and mom quietly balling and gushing underneath rain gear. While he missed the opportunity to score a goal that night by a hair (pun intended), he did remind us all that his spunk is back by getting kicked out of the game with a yellow card. He's a fighter, my greatest teacher (along with Sam and Lucy), and now considering a future in sports management or sports marketing. Transcripts and senior essay available for review. (wink, wink)</span></p><p><span style="font-family: verdana; font-size: medium;">As he promised, THE COMEBACK WAS F*ING HUGE!!! </span></p><p><span style="font-family: verdana; font-size: medium;">J - I love you. Thank you for letting me share your story in this space. It is now yours to continue. You have shaped us and most importantly yourself into a sturdy, resilient, (stubborn) being capable of holding tremendous power and light. Thank you for showing us how it's done. </span></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKjurFPPTG3M6br1vbWrX6rNxZnO_HYXmFrJltkAth35zCjL4DRJBn5356h2IQw9eBxAglSKIkf50xsnExdfWFyvSU5Mp5DQBo_1NtCMk9_PuKzQ6vvV5Fa_jBFsT2V3ESugooX-wFFQbQovR63LSkN4FWSqOFQfJjKJvSmO2wUV8oEJBAhViWASyBPtU/s1297/IMG_2274.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1297" data-original-width="1038" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKjurFPPTG3M6br1vbWrX6rNxZnO_HYXmFrJltkAth35zCjL4DRJBn5356h2IQw9eBxAglSKIkf50xsnExdfWFyvSU5Mp5DQBo_1NtCMk9_PuKzQ6vvV5Fa_jBFsT2V3ESugooX-wFFQbQovR63LSkN4FWSqOFQfJjKJvSmO2wUV8oEJBAhViWASyBPtU/w320-h400/IMG_2274.jpg" width="320" /></a></div><br /><div class="separator" style="clear: both; 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text-align: center;">* photos (the good ones) are courtesy of Caty Mawing photography. </div><br /><p><br /></p><p><br /></p></div></div></div>A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com11tag:blogger.com,1999:blog-7943363282669429191.post-48905574421392414592023-05-02T05:52:00.000-07:002023-05-02T05:52:12.497-07:00CEREMONY <p><span style="font-family: courier; font-size: large;"></span></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><span style="font-family: courier; font-size: large;"><br /></span></div></div><div class="separator" style="clear: both; text-align: center;"><span style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfQXAKXkiRx19n5L1rhZgYnW6a0Y6ZB8DxN6cKX0Ip9p064ahNjCeIiC-zPq67QAza1tt03mhKu6JcGZ8uwWjYrRvK5dgNP-IyoB3gWKAqw_jNR5XizmNaJfwsYyiPSIHHX0fmmXMgB08ELtRG3P4g0qerEFkngzDSFvwPhnV-PSkW2jwRDRvEnGlQ/w300-h400/IMG_9340.jpeg" width="300" /></span><div class="separator" style="clear: both; margin-left: 1em; margin-right: 1em; text-align: center;"><br /></div></div><p></p><p><span style="font-family: courier; font-size: large;">On Sunday Dec 18<sup>th</sup>, I noticed the swirl of uncertainty coursing through as I questioned whether or not to teach my Monday morning yoga class. Jack had been in struggleville for weeks with unexplained abdominal pain, sleepless nights, and missing important days of his junior year of high school. He was scheduled for a procedure during my class and it was silly for both my husband and I to hover over the next test result. The week before, he received a new diagnosis and another medication. Neither left us confident we had resolution, nor did the medication provide any relief.</span></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><span><span style="font-family: courier; font-size: large;">I ate my own words that morning, choosing love over fear, and carried on. I taught my class. I spoke about setting up tiny altars, ceremonies, little moments of holy. By the end of <a href="https://youtu.be/nsF0sstE-ro" target="_blank">class</a>, a text arrived. A moment of brief knowing, a seemingly tidy ending. He received another diagnosis, another medication, but he was going to be okay. They were on their way home.</span></span></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><o:p><span style="font-family: courier; font-size: large;"> </span></o:p></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><span style="font-family: courier; font-size: large;"><span>We ran</span> hope through our system for another sleepless night. Jack declared the pain would never leave. As my faith tanked again, I urgently called Mayo Clinic in Rochester Dec 21. By 6am, I managed to get on the schedule for the next day with a GI doc. The winter solstice arrived today, the darkest day, (max tilt away from the light) affirming THIS might yield an answer. </span></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><o:p><span style="font-family: courier; font-size: large;"> </span></o:p></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><span style="font-family: courier; font-size: large;">We never made it to Mayo. We landed back in the ER in Minneapolis at 5am and finally learned that Jack had a large mass in his abdomen, a diagnosis of PTLD (a type of lymphoma in the organ transplant world). We learned the mass was present on scan just 3 months prior, half the size. </span></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><span style="font-family: courier; font-size: large;"><br /></span></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><span style="font-family: courier; font-size: large;">Jack and dad spent the next 8 days in the hospital undergoing a surgical biopsy, bone marrow biopsy and spinal tap to understand the depth of disease. Alarms reverberated inside and out again. We learned it was aggressive, but contained. Amen. There was a path forward. <o:p></o:p></span></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><o:p><span style="font-family: courier; font-size: large;"> </span></o:p></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><span style="font-family: courier; font-size: large;"><span>This energy, this dance, is not unfamiliar to us raising a boy with chronic kidney disease. Covert coping mechanisms intact. This crisis was different though. I also had two teens at home who were deeply present to our new reality. There was no hiding. Christmas was 2 days away. I was frozen, literally. Both my nervous system and the furnace came to a halt. The blizzard MN was making national news for, had left air temps lingering around -25F this day. Resolving the furnace quickly, (Perfection Heating!) and narrowing the gap between holiday expectations and Truth was the task at hand. Harry and I brainstormed over Facetime in the hospital. Sadness swept through. It was so clear to me </span>how all the accumulated "little t” traumas had silently piled up for each one of us, just before it topples over. </span></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><span face="Merriweather-Regular" style="color: #131313; font-size: 14pt;"> </span><span face="Merriweather-Regular" style="color: #131313; font-size: 14pt;"> </span></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><span style="color: #181818; font-family: courier; font-size: large;">We are now allowing space for phase 2 of treatment. The mass continues to be active, contained, and still unreachable via surgery. Jack will begin 4 rounds of chemotherapy, every 3 weeks. We will continue to meet the moment, as gracefully as possible.</span></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><br /></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><span style="font-size: large;"><span style="font-family: courier;">There is much unknown ahead, but Jack's team is cautiously optimistic this treatment will work. </span></span></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><br /></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiizLskFGrk1CeH7_WOf2Jx11j606rTwxoWZ97wg7DmpOXjQZcadNBUtj8DkUF6K3QUp-ujTFG4f2Do3dYw588G3Cw7SoW4rOm8iyO_H5LsfsUJY-U44fSDuTgzeRnEQ6plMm5xGo43yJSUFrfR2FPo2oAQUI-yEKE6NekFPl0Y7ABpcJGSR5Hm4Qwy" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="2316" data-original-width="3088" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEiizLskFGrk1CeH7_WOf2Jx11j606rTwxoWZ97wg7DmpOXjQZcadNBUtj8DkUF6K3QUp-ujTFG4f2Do3dYw588G3Cw7SoW4rOm8iyO_H5LsfsUJY-U44fSDuTgzeRnEQ6plMm5xGo43yJSUFrfR2FPo2oAQUI-yEKE6NekFPl0Y7ABpcJGSR5Hm4Qwy" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><span style="font-family: courier; font-size: large;">Mark the moment. Make it sacred. Dance it out. Light some fireworks. This is how we do it. Thank you for keeping us in a circle of love. </span></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><br /></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><span style="font-family: courier; font-size: large;">Ali </span></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><br /></p><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEg36tuAjYWDgrGPXKoFjZwiT0agoX31mPRu2J32rEfgxC9DFpYqw2_d2Yg-VWWx70LSkdzomJk9ZVGPhbe9MjGqNbzrd13t1BNP49xIOigH7gJu4MspZk1bRKuSO_QIXLm8R7rG2DzxSgIXbt44UWY1rv69-JA9465z9RNOXTdKHDijEaQYEldT5pXc" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="4032" data-original-width="3024" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEg36tuAjYWDgrGPXKoFjZwiT0agoX31mPRu2J32rEfgxC9DFpYqw2_d2Yg-VWWx70LSkdzomJk9ZVGPhbe9MjGqNbzrd13t1BNP49xIOigH7gJu4MspZk1bRKuSO_QIXLm8R7rG2DzxSgIXbt44UWY1rv69-JA9465z9RNOXTdKHDijEaQYEldT5pXc" width="180" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjN2gHqDC1rnFfJTUolvxYSH_xT5Jtq_M6FQGR9qssaHKW53RskQeET9h1cOTWzU5jRlCYNo2jRsLk-4P9o0ur0A8MNDjaPiIcmmS7SxNJTlRsrzVSWlrlobf9QsdTF-X_e5nMq0uASXFDr-sQIui3sAl-RYbIXNG8RRzLF6WctOtvZE6VFLUb6uYjd" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEjN2gHqDC1rnFfJTUolvxYSH_xT5Jtq_M6FQGR9qssaHKW53RskQeET9h1cOTWzU5jRlCYNo2jRsLk-4P9o0ur0A8MNDjaPiIcmmS7SxNJTlRsrzVSWlrlobf9QsdTF-X_e5nMq0uASXFDr-sQIui3sAl-RYbIXNG8RRzLF6WctOtvZE6VFLUb6uYjd" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEi1a02NqtHZL1-MtEEOvtf2kbfNrnolaIEym2q5tuiENqO-8-xjX8Uu7cEUtCobSk16omD9xGZvx7tFmvLNijno9MvVz3pUq3DXs015TYnTdq-iM8dK0nIo37JqiXbyZOI9TX_LiITgkqFtYb-mgPrChIUAQndVcJVEikzMG46KtfAQcX9G17BOVAkE" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEi1a02NqtHZL1-MtEEOvtf2kbfNrnolaIEym2q5tuiENqO-8-xjX8Uu7cEUtCobSk16omD9xGZvx7tFmvLNijno9MvVz3pUq3DXs015TYnTdq-iM8dK0nIo37JqiXbyZOI9TX_LiITgkqFtYb-mgPrChIUAQndVcJVEikzMG46KtfAQcX9G17BOVAkE" width="320" /></a></div></div><p class="MsoNormal" style="margin: 0in 0in 0.0001pt;"><br /></p><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyZ_iv7ZDKzhrb0Pk0kKBjjhk6U6qb4IbWwl974AuZ6-dTbRVgu1TmNPGzeaG8rQ0Pp-VlpnI3XjxApoJhZ4Q' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div><br />A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com9tag:blogger.com,1999:blog-7943363282669429191.post-16515571681130010902023-02-16T17:54:00.008-08:002023-02-16T18:02:37.218-08:00WINNING. <div class="separator" style="clear: both; font-family: courier; font-size: x-large; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgN_5danwHyVC8cv9k6mukxYSoEJaQcst9mGYawIE4Xcji-t8krrmO2ljuXkOLC9bn65-EMolZcZDsIThcMa2-Ow0Qlg7Lwm9xDidsK1Bde_wgC5abyozFNYlqPpvCKbp-Afq_eR-kOFc8hsjL3CrcKomRFsSGso8VwerKGgTnaFO11YiKb-zVsFvVZ" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="3023" data-original-width="3637" height="332" src="https://blogger.googleusercontent.com/img/a/AVvXsEgN_5danwHyVC8cv9k6mukxYSoEJaQcst9mGYawIE4Xcji-t8krrmO2ljuXkOLC9bn65-EMolZcZDsIThcMa2-Ow0Qlg7Lwm9xDidsK1Bde_wgC5abyozFNYlqPpvCKbp-Afq_eR-kOFc8hsjL3CrcKomRFsSGso8VwerKGgTnaFO11YiKb-zVsFvVZ=w400-h332" width="400" /></a></div><br style="font-family: courier; font-size: x-large;" /><div><br /></div><div><span style="font-family: courier; font-size: large;"><span>Let's start with the Hoosiers. Jack could not be more thrilled with their current success. C</span>ertainly, it would make sense that Jack's oncologist is an Indiana grad, similar time frame to mom (me) and Uncle Jeff. Dad rocks the candy stripes just to keep a low profile around here. Things are lining up very well. </span></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEih1NKBilZY_e6qNFHXqx2tsrvMWGmjid6nc5y-H84pjVZ88KSWhcQvSSjmLAQw2vhoHC9bebjI_H16nvOR9jRNIhVKiOYDBDQ-CwqwcGqeoXpLilA1Q2sMKUcd7d06fWutHstZccBEdDzf9TTjMqXNx5ipRw52sqg0Pkmsg_3hiXwqfRbryH9yDq0X" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="1024" data-original-width="535" height="400" src="https://blogger.googleusercontent.com/img/a/AVvXsEih1NKBilZY_e6qNFHXqx2tsrvMWGmjid6nc5y-H84pjVZ88KSWhcQvSSjmLAQw2vhoHC9bebjI_H16nvOR9jRNIhVKiOYDBDQ-CwqwcGqeoXpLilA1Q2sMKUcd7d06fWutHstZccBEdDzf9TTjMqXNx5ipRw52sqg0Pkmsg_3hiXwqfRbryH9yDq0X=w208-h400" width="208" /></a></div></div><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhNELvWP9voA8QKpnGWxhKU0jUnvHozXDJDlXGfyQ9pCqNuZxoE41P3lul-ouh9gFRb-_b16eiF5bkNf6jlLJFEz3b9j_oxMqgUvoXInfBA5AG91a3fJ0rBUVg1HGqDobcTmhrZufTzELG8BNfQ1B6Hi7LqTljNjuc_gOByQ7Nz-7d9IdH1X2Qdg9gz" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="3088" data-original-width="2316" height="400" src="https://blogger.googleusercontent.com/img/a/AVvXsEhNELvWP9voA8QKpnGWxhKU0jUnvHozXDJDlXGfyQ9pCqNuZxoE41P3lul-ouh9gFRb-_b16eiF5bkNf6jlLJFEz3b9j_oxMqgUvoXInfBA5AG91a3fJ0rBUVg1HGqDobcTmhrZufTzELG8BNfQ1B6Hi7LqTljNjuc_gOByQ7Nz-7d9IdH1X2Qdg9gz=w300-h400" width="300" /></a></div><br /></div><div><span style="font-family: courier; font-size: large;">Aside from healing and making the <a href="https://twitter.com/IndianaMBB/status/1618428463261835264">Twitter</a> Indiana Hoosiers page, Jack is focused on being an academic weapon (dad joke) at school. He is also making good headway with treatment. </span></div><div><span style="font-family: courier; font-size: large;"><br /></span></div><div><span style="font-family: courier; font-size: large;"><br /></span><div class="separator" style="clear: both; font-family: courier; font-size: x-large;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhE_v2rnIa8EDsNuXWokWOmfkBmPZ90DQ02MnsKtWkbvz5Vvt9LxA2X6W-oGjAHji80xHcyloMgBqN5rMkCU07qVt1zU08TbQYC0YDii2Q6mYV9OgQXt-3XxEs5ERvrnfWy7hj7niKJJ47d7bWHe_PinmlKNfS1ATI6M2XUplaNuJPEkeMJ20aSVhDq" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="2532" data-original-width="1170" height="640" src="https://blogger.googleusercontent.com/img/a/AVvXsEhE_v2rnIa8EDsNuXWokWOmfkBmPZ90DQ02MnsKtWkbvz5Vvt9LxA2X6W-oGjAHji80xHcyloMgBqN5rMkCU07qVt1zU08TbQYC0YDii2Q6mYV9OgQXt-3XxEs5ERvrnfWy7hj7niKJJ47d7bWHe_PinmlKNfS1ATI6M2XUplaNuJPEkeMJ20aSVhDq=w296-h640" width="296" /></a></div></div><div><span><span style="font-family: courier; font-size: large;">Pet scan this week indicates the mass has shrunk substantially but still shows metabolic activity (active disease). </span></span><span style="font-family: courier; font-size: large;">A creatinine jump and fever landed him back in the hospital, for just a night. Familiar chemistry and covert coping mechanisms intact by all. Check, check. </span></div><div><span style="font-family: courier;"><span style="font-size: large;"><br /></span></span></div><div style="text-align: left;"><span style="font-family: courier; font-size: large;"><span><span>We will stay the course with</span></span><span><span> a 2nd round of Rituximab (4 more i</span><span>nfusions, 1 x wk) and repeat pet scan April 11. If there is still metabolic activity, they will reconsider removing remaining mass. Good news here. </span></span></span></div><div style="text-align: left;"><span><span style="font-family: courier; font-size: large;"><br /></span></span></div><div style="text-align: left;"><span style="font-family: courier; font-size: large;"><span>In other news </span>he/we managed to strap on<br /> skis at Whistler/Blackcomb in-between infusion #4 and #5. Along with that bold move, came a virus for mom and Jack. The view and fresh air were worth it. </span></div><div style="text-align: left;"><span style="font-family: courier; font-size: large;"><br /></span><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjOeNpbo2cWlyRgWDzlPbqSHRvsR8r1wD_GQlgLPNH6TZ7cI9hnfgUzQXCJAXASPFjdPlIwFkhiV6LiakcZzKmpxigKNM_vSm85-LBfLi80-qggNF7Eh7XDP55oyqF4yzonwy3csV19kN9PbYuSNfqjdBgJKzLFAD2gtO7PlHuJnCmrB79efukh4y7C" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: courier; font-size: large;"><img alt="" data-original-height="1200" data-original-width="1600" height="480" src="https://blogger.googleusercontent.com/img/a/AVvXsEjOeNpbo2cWlyRgWDzlPbqSHRvsR8r1wD_GQlgLPNH6TZ7cI9hnfgUzQXCJAXASPFjdPlIwFkhiV6LiakcZzKmpxigKNM_vSm85-LBfLi80-qggNF7Eh7XDP55oyqF4yzonwy3csV19kN9PbYuSNfqjdBgJKzLFAD2gtO7PlHuJnCmrB79efukh4y7C=w640-h480" width="640" /></span></a></div></div><div style="text-align: left;"><span style="font-family: courier; font-size: large;"><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;">Annnnnd, we now have 3 teenagers in the house. Lucy is 13. So proud to be her mom.</span></div></span></div><div style="text-align: left;"><span style="font-family: courier; font-size: large;"><br /></span></div><div style="text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgbvStSxGgl_tWTaSgMyEonez4nuST8NcFBwHS96l6cwB5M9kR6RT-SWq-GrAyVlVvdVS9x7JXYC9hzfV4ViaLXNIEKps7Q-_LzTffgOy8pdiUcctvkaNHo-ZJP5nainTeoqMukxuK96PLA3j_C5TNuHS_fGaVsVKvTDD86AatrgpjhhKZWXE2CRc7c" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEgbvStSxGgl_tWTaSgMyEonez4nuST8NcFBwHS96l6cwB5M9kR6RT-SWq-GrAyVlVvdVS9x7JXYC9hzfV4ViaLXNIEKps7Q-_LzTffgOy8pdiUcctvkaNHo-ZJP5nainTeoqMukxuK96PLA3j_C5TNuHS_fGaVsVKvTDD86AatrgpjhhKZWXE2CRc7c" width="320" /></a><br /><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /></div><div style="text-align: left;"><span style="font-family: courier; font-size: x-large;">Go IU! </span></div><div><span style="font-family: courier; font-size: large;"><br /></span></div><div><span style="font-family: courier; font-size: large;"> </span></div><div><span style="font-family: courier; font-size: large;"><br /></span></div><div><span style="font-family: courier; font-size: large;"><br /></span></div>A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com3tag:blogger.com,1999:blog-7943363282669429191.post-7842405334361597202023-01-24T17:46:00.000-08:002023-01-24T17:46:28.411-08:00MAGIC HANDS<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgttBfVsi0G8gTo5UUAHScKMDB0c37sSnGCbVEWr55u0Ua45iv-gKwfaZK04VSqVf0-KlQvoefzbknDvVIfMywyKDe6P6A4P8_B01X4JFndhsIyNNJQOrTMkLqF0Ptsy2EK-BiYWobefQ8MRNe09aq_vvRYvnDs6pX_ixdTdDegCD--nsxEu_IEivYG/s1024/IMG_8639_jpg.heic" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="768" data-original-width="1024" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgttBfVsi0G8gTo5UUAHScKMDB0c37sSnGCbVEWr55u0Ua45iv-gKwfaZK04VSqVf0-KlQvoefzbknDvVIfMywyKDe6P6A4P8_B01X4JFndhsIyNNJQOrTMkLqF0Ptsy2EK-BiYWobefQ8MRNe09aq_vvRYvnDs6pX_ixdTdDegCD--nsxEu_IEivYG/s320/IMG_8639_jpg.heic" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: courier;"><span style="text-align: left;"><span style="font-size: large;"> </span></span><span style="font-size: large;"><span style="text-align: left;">I splurged in November purchasing this print, "Magic Hands" by Jen Arment. </span><span style="text-align: left;"><span>It felt indulgent for the moment we were in and I had no specific place in mind for it at the time. How convenient that we need them right now. </span></span></span></span><span style="font-size: large;"><span><span style="text-align: left;"><span style="font-family: courier;">Being proficient and curious about movement, I just love hands. They are instruments of the heart. </span></span><span style="text-align: left;"><span style="font-family: courier;">Jewel beautifully describes them as "thought cooled down into action". </span></span></span><span><span style="text-align: left;"><span style="font-family: courier;">Like the hands, o</span></span></span><span style="font-family: courier; text-align: left;">ur bodies say so much. Jack's intui</span><span style="font-family: courier; text-align: left;">tion was way high this season and I continue to be very proud.</span></span></div><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;"><span style="font-family: courier; font-size: large;"><br /></span></span></div><span style="font-family: courier; font-size: large;"><div style="text-align: center;"><span>#4th infusion complete. You could say this is halftime, midway through cancer season. Next p</span><span>et scan is Feb 7th. Assuming favorable results, we will continue with 4 more infusions.</span></div></span><p></p><p style="text-align: center;"><span style="font-size: large;"><span style="font-family: courier;">Jack is looking good, feeling good. </span><span style="font-family: courier;">Thanks for the loving, healing hands all around. </span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-size: large;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: courier;"><span style="font-size: large;">Love, A</span></span></div><p></p>A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com11tag:blogger.com,1999:blog-7943363282669429191.post-91606344358165192672023-01-01T09:33:00.000-08:002023-01-01T09:33:06.002-08:00THE COMEBACK IS GONNA BE HUGE<p><span style="font-family: verdana; font-size: medium;"><br /></span></p><p></p><div class="separator" style="clear: both; text-align: center;"><img border="0" data-original-height="1280" data-original-width="1792" height="286" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKKpWhvBdcZuGZ7diZWR1-n_jLIp8ehL1QyD7T1BNHPAokC6ioO0BaEfrW_n7sFtSOVVKyhkbiONFXkYr6SU7NjDXGhUJOEKwKNkS-aYwrviFYdZWef_QucEdZNjOZKtHpENIeLQL_nwgk4wKl0wbCCT5OMiuA7GWFDrtVKsYQV0Rh26wpuOTx5wxC/w400-h286/IMG_8072.heic" width="400" /></div><p></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;">If you are new here, you'll learn quickly that the Certains have a strong game face and highly dramatic life. We keep it cool here, most days. We also share here, because without you, we wouldn't be here. Community helped Jack find a kidney twice, so far. (age 2 and 13) </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;">If you've been around the block with us awhile longer, you know we like to go at it alone sometimes, too often. We don't need any of your support because we have two 17 year old boys who know every thing about everything. We also have a soon to be 13 yr old lady who is on the accelerated emotional intelligence path. Thank God, Harry and I can finally take a rest. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;">You may recall my grammar is fair and if you are really keen you'll appreciate the bigger font. Don't expect a news feed with daily updates. For now, I simply intend to use this space to clarify, integrate, and to lead.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;">Be assured details will not be overshared here. Mad respect for the boundaries for this fine young man. I intend to engage with what is and help navigate the task of staying present. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;">Jack was diagnosed with PTLD Post-transplant lymphoproliferative disorder, a type of lymphoma, well known in the transplant world as a complication to avoid. He has a size-able mass in his abdomen that will need treatment. We also have a transplanted kidney to continue to protect. He will have 4 weeks of immunotherapy, evaluate, and continue another 4 weeks. He has a 75% chance of this treatment plan working. We will reroute to other less pleasant options at that time if he is not responding well. He will return to school, a nice change given he missed all of December.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;">The last several weeks have been difficult. The details don't really matter. You have your own version of a similar story. To witness one's suffering is harrowing, unthinkable. Little by little, we learn to stand tall and engage with what is. Choice. Choice with what is.</span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;">Our world came into focus so fast everything else outside got blurry. A weird gift that comes with a diagnosis and more waiting. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;">Jack got knocked down pretty hard, proving again to be the hardest working player in the room. Your composure, grit and bravery are undeniable. Your words, not mine "The comeback is gonna be huge". We are with you every step of the way. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;">To the people that experienced us in the raw the last two weeks, I am lucky to be known and loved so well.</span></span></p><p></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="font-family: courier; font-size: large;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Surrendering, softening is hard. We are programmed to close off and protect (each other, ourselves). </span><span style="white-space: pre-wrap;">We are also not blind to the grace that sweeps through at exactly the right time and cracks our heart and arms wide open. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;">It will take time to reset. Be assured we feel equipped, well loved, respected and supported. We are better at asking for help. We are better at surrendering when it is time. We are better at clarifying our needs. Oddly, we get better. We will use our voice for the good. For now, all healing hands and light on Jack. </span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;"><br /></span></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: courier; font-size: large;"><br /></span></span></p><span style="font-family: verdana; font-size: medium;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfJG7MyyQwnLQO027I7w0WyF1_h9zfwpEo6JtocUM7yxcMxODX1U0Vf9UZHDcEhedEVbBvdOV8Zs0QlLBUlG8vWXrN-0mDedS2p_4lYtAkxDTbaOwH2OAMz1JzTb-Ofvmyc98ahv2eVPgppeOu6OqwwAgtsT5Iabwpd-NFpnPj8wybTJJRpDCPd7uI/s4032/IMG_8357.heic" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfJG7MyyQwnLQO027I7w0WyF1_h9zfwpEo6JtocUM7yxcMxODX1U0Vf9UZHDcEhedEVbBvdOV8Zs0QlLBUlG8vWXrN-0mDedS2p_4lYtAkxDTbaOwH2OAMz1JzTb-Ofvmyc98ahv2eVPgppeOu6OqwwAgtsT5Iabwpd-NFpnPj8wybTJJRpDCPd7uI/s320/IMG_8357.heic" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwG20Thg2XQSp81rcp3iNlnzUsUmKpv5p0G3dsWjwqsZ2ADs3baWwljVK-Txux9J5QqmR13oO6HwwHj52m-I97ErGwnomiwRgZAJID5sxaEh6ie0sGGbG-WJNGMbRMDVke6G6jVRAybx9kHY0kviIiU8DFPHStlYJHyO4lFIBeh4mjcR47ZpF_vuXb/s4032/IMG_8354.heic" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwG20Thg2XQSp81rcp3iNlnzUsUmKpv5p0G3dsWjwqsZ2ADs3baWwljVK-Txux9J5QqmR13oO6HwwHj52m-I97ErGwnomiwRgZAJID5sxaEh6ie0sGGbG-WJNGMbRMDVke6G6jVRAybx9kHY0kviIiU8DFPHStlYJHyO4lFIBeh4mjcR47ZpF_vuXb/s320/IMG_8354.heic" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzWp8DPZ5qYzU3UI2D1kNflNB2w_tGFXLKfaU3_M_a6qrIZeAjdqoyw6FuFkchkwkbJsfhn8FuIw_C6HlaBpt23x7e8Amm-z54WyCTmTB4RaoGQ8dFr-6gfqq2ZHvIJNXmzG1WiPwwFWp_GqUIVrMtE0QLsqlAjTl2CsGuPiV6tw_2KFyCkdCWZ5Bc/s4032/IMG_8349.heic" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzWp8DPZ5qYzU3UI2D1kNflNB2w_tGFXLKfaU3_M_a6qrIZeAjdqoyw6FuFkchkwkbJsfhn8FuIw_C6HlaBpt23x7e8Amm-z54WyCTmTB4RaoGQ8dFr-6gfqq2ZHvIJNXmzG1WiPwwFWp_GqUIVrMtE0QLsqlAjTl2CsGuPiV6tw_2KFyCkdCWZ5Bc/s320/IMG_8349.heic" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg098Tt2s74zRfITX8W528aSIzxfKWntZXyaBHFJ9J7aVdqJNikAyQCFxmwNR3ipyUEr_gjYIFvKwSNufODAGtK4eCTZiWjnk_ygY8XrNIcC46rCEk6bEEFnr_fZYol2m8eO7iu2vsrecAqDAGlbNc5ZqkOrU-CrfFtaj_mix4fvhW9ZssWsewpI-So/s3088/IMG_8381.heic" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2316" data-original-width="3088" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg098Tt2s74zRfITX8W528aSIzxfKWntZXyaBHFJ9J7aVdqJNikAyQCFxmwNR3ipyUEr_gjYIFvKwSNufODAGtK4eCTZiWjnk_ygY8XrNIcC46rCEk6bEEFnr_fZYol2m8eO7iu2vsrecAqDAGlbNc5ZqkOrU-CrfFtaj_mix4fvhW9ZssWsewpI-So/s320/IMG_8381.heic" width="320" /></a></div></span><p><br /></p><p></p><div class="separator" style="clear: both; text-align: center;"><br /></div><p><br /></p><p><span style="font-family: verdana; font-size: medium;"><br /></span></p><p><span style="font-family: verdana; font-size: medium;"><br /></span></p>A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com12tag:blogger.com,1999:blog-7943363282669429191.post-52541223586984066092018-04-05T20:00:00.002-07:002018-04-05T20:00:34.535-07:00a drop in the ocean<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYHQsZm5K7H6RYK-tFONFffKF7hMxX7rBQWhv1aWcuImApQeORFUY09tSX7dGC_wVm3-6ERcg15rE7sWx7miIX_SZ1QhGL15Nmv9ZyRJha61xGpi2E_nFChOG2ku6cjnVExiYQsf-ydMY/s1600/IMG_2191.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-size: large;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYHQsZm5K7H6RYK-tFONFffKF7hMxX7rBQWhv1aWcuImApQeORFUY09tSX7dGC_wVm3-6ERcg15rE7sWx7miIX_SZ1QhGL15Nmv9ZyRJha61xGpi2E_nFChOG2ku6cjnVExiYQsf-ydMY/s320/IMG_2191.jpg" width="240" /></span></a></div>
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<span style="color: black;"><span style="font-family: inherit; font-size: large;">"I am not you. I am something like you. I am nothing but
you."<o:p></o:p></span></span></div>
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<span style="color: black;"><span style="font-family: inherit; font-size: large;"> - Dr. Douglas Brooks<o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: large;"><span style="color: black;">About 6 months after Jack</span><span style="color: black;">’</span><span style="color: black;">s second kidney transplant, I went on a two-week pilgrimage to
southern India with Dr. Douglas Brooks. It was indeed an arduous journey traveling
through 20 temples (in 12 days, at all hours of the night), two schools, poverty stricken villages and cities. The </span><span style="color: black;">“</span><span style="color: black;">How was
India?!</span><span style="color: black;">”</span><span style="color: black;"> question was always a hard one to answer. It
wasn</span><span style="color: black;">’</span><span style="color: black;">t necessarily a fun kind of trip (stuffed into 5 yards of a silk sari, safety and bobby pins poking out of me) although it would be a privilege to do it all over again. It was complicated,
uncomfortable, demanding and depressing. It was eye opening and heart-warming. It
was a world of contrast and paradox</span><span style="color: black;"> - poverty and abundance, chaos and
contentment</span><span style="color: black;">. I could go on. </span><span style="color: black;"> Douglas best
describes the trip as a </span><span style="color: black;">“</span><span style="color: black;">house of mirrors</span><span style="color: black;">”</span><span style="color: black;">. <span style="mso-spacerun: yes;"> </span>Reflection available in
every moment. <span style="mso-spacerun: yes;"> </span>While the context was
entirely different, the mere two-day pilgrimage we took to Mayo Clinic last week
yielded many similar feelings and reflection was no doubt available
everywhere.<span style="mso-spacerun: yes;"> </span></span></span></div>
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<span style="color: black;"><span style="font-family: inherit; font-size: large;">Our road trip to Rochester was intended
to seek clarity, a second opinion, and a plan for the two tumors in Jack's
transplanted kidney. The 2 days at Mayo Clinic were long and daunting but as
you walk through you are reminded you are but a small drop in the ocean. The
elevator corridor and the valet entrance were bustling with diversity and urgency.
Despite the lack of familiarity, I ran into dear friend who was receiving
chemo for breast cancer. We rarely have time back in the twin cities to
connect and yet we lunched together at Mayo- peculiar indeed. We were newbies
to Mayo on day one, but by day two we walked through standing up straight with
our shoulders back, embracing our reality as it was.<o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: large;"><span style="color: black;">The MRI was the highlight of the trip (for me).
I went into the room with Jack and held onto his non slip socks as he was
inside the MRI tunnel. I was intentional about gently changing my grip and often
to remind him I was close. He was nervous but playing cool which makes
you proud and breaks your heart in the same moment. We were prepped to be in
there for 40 minutes. I sat there with nothing to read, no phone, no one
to talk to (I know, poor me). I found it entertaining to read every label on
the cabinets... "linens", "soiled linens", and so on.
I found every label on the MRI machine to read "Seimens",
"danger - don't look at this red laser</span><span style="color: black;">”, etc.</span><span style="color: black;"> until finally I had nothing left to do except close my
eyes. Calm sank in immediately. I surrendered into the silence beneath the MRI
clamor in meditation, in prayer. I silently asked for courage, hope,
guidance and clarity. I asked for health. I repeated mantra. I dug deep for all
the tools I have been given. Things seemed to be going well for me... I had a
steady stream of grandparents, family friends, students and loved ones - all of
whom passed way too soon, that flooded my mind. I thanked and honored them all.
I felt assured everything was going to be ok. <span style="mso-spacerun: yes;"> </span>Since I had the attention it seemed of many
and the powers that be, I extended my lofty request to all my friends and
family who struggle with something physically, emotional or mental. (Yes, if
you are wondering, you made the list). Again, the list was long. Too
long. Another reminder of what a drop in the ocean we are. I've always
felt the details of Jack's story are unique and yet, not at all. There is
something universal in all of this otherwise I wouldn't share it here in this
space. <span style="mso-spacerun: yes;"> </span>Different details and different
characters are in your story, but surely you can relate in some way. Soon the
40 minutes was up and I felt refreshed and oddly Jack did too. <o:p></o:p></span></span></div>
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<span style="color: black;"><span style="font-family: inherit; font-size: large;">We learned a lot at Mayo. We also affirmed
what a great team we have at the U of MN where our care has been for 12+
years. We stand mostly in a similar stance as before. We have 2 cysts, no
one likes them, no one will say for certain (no pun intended. at all. not
funny. ha.) what they are or are not without more tissue. <o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: large;"><span style="color: black;">The most likely next step to retrieve more
tissue is either another biopsy or possible removal of the cysts (partial nephrectomy).
Mayo would like to remove them. They assure us this is </span><span style="color: black;">“</span><span style="color: black;">easy</span><span style="color: black;">”</span><span style="color: black;"> and won</span><span style="color: black;">’</span><span style="color: black;">t compromise
his kidney function. <span style="mso-spacerun: yes;"> </span>Our team at the U
of MN previously felt this was too risky given the lack of reserve in his
kidney and would most likely land him back on dialysis in 2018. Hmmpf. <o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: large;"><span style="color: black;">Unfortunately, the last biopsy we had in Dec could
only reach one of the cysts - the one that both parties agree looks </span><span style="color: black;">“</span><span style="color: black;">normal/simple</span><span style="color: black;">”</span><span style="color: black;">. Conclusions had to be drawn based on the
limited tissue at hand that <i style="mso-bidi-font-style: normal;">both</i>
cysts presumably were the same. <span style="mso-spacerun: yes;"> </span>We now
know that the bigger concern is on the cyst that they couldn</span><span style="color: black;">’</span><span style="color: black;">t reach via needle biopsy. (You may recall the great debate about
an open vs. needle biopsy). An open biopsy would have been far more invasive
and conclusive. Our team opted for the less invasive approach but we were
unable to gather all the facts. The second cyst, which is tucked in near
other organs and hard to reach, looks more complex and shows change since the
last ultrasound. We all are smart enough to know that first cyst could likely
change into something more complex and concerning.<o:p></o:p></span></span></div>
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<span style="color: black;"><span style="font-family: inherit; font-size: large;">The ball is in our court now. We will reconvene
with our team at the U of M Childrens Masonic Hospital next week and decide where to go from here.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></span></div>
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<span style="font-size: large;"><span style="color: black;"><span style="font-family: inherit;"><span style="font-family: inherit;">For now, all is well. </span><span style="font-family: inherit;"> </span><span style="font-family: inherit;">Jack feels great. Nothing is urgent. His is
healthy within his illness. However, he is without a doubt the elephant in the
room. In India, Ganesha, the powerful and wise elephant headed little boy is
the first deity that meets you in the threshold of any temple. Ganesa is the
lord of beginnings and thresholds. He is known as the remover of obstacles. However,
he often puts the obstacles there. As Douglas </span>says<span style="font-family: inherit;"> "For without the pebble in our shoe, we might
not ever act." Ganesha invites you to mark your boundaries, step into your
possibilities. He invites you to see more. He invites you to </span></span></span>see yourself as him. <span style="font-family: inherit;">The elephant is unmistakable,
obvious. He wants to make things clear. One of the few treasures I brought home from India was a statue or a murti of Ganesha. </span></span></div>
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<span style="font-family: inherit; font-size: large;"><span style="color: black;">So, </span><span style="color: black;">“</span><span style="color: black;">How was
Mayo?</span><span style="color: black;">”… </span><span style="color: black;">(thank you for asking/reading). The answer is complicated,
confusing and yet we feel calm. While the journey we are on is arduous, it</span><span style="color: black;">’</span><span style="color: black;">s an absolute privilege to take Jack through it, and I would do it all again. <o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: large;"><span style="color: black;">When it</span><span style="color: black;">’</span><span style="color: black;">s time
for this to again be the focal point of our family, we will let it be. For now, back to laundry, dishes, homework, chaos, and uncertainty. <span style="mso-spacerun: yes;"> </span>Thank you near and wide for your continued
support and presence.</span></span></div>
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<span style="font-family: inherit; font-size: large;">Love,</span></div>
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<span style="color: black;"><span style="font-family: inherit; font-size: large;">Ali</span></span></div>
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<span style="color: black;"><span style="font-family: inherit; font-size: large;"><br /></span></span></div>
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<span style="color: #181818; font-size: large; text-align: center;">“You are not a drop in the ocean. You are the entire ocean in a drop.” - Rumi</span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Southern India, Dec 2014</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Ganesha </span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjss8WBcgVcxh-5sj9WV0VcGjM46ryUQRr9EelkPjsgfp725FCioDa8PEzG4_XNV8-GkC7F9K-WaGmRPPGzy0ysFI6tkShFCftKlJqZiPehpqXEuC8kVh5dNrQGtZdeySPM1QBHuqP1KgQ/s1600/IMG_4288.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-size: large;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjss8WBcgVcxh-5sj9WV0VcGjM46ryUQRr9EelkPjsgfp725FCioDa8PEzG4_XNV8-GkC7F9K-WaGmRPPGzy0ysFI6tkShFCftKlJqZiPehpqXEuC8kVh5dNrQGtZdeySPM1QBHuqP1KgQ/s400/IMG_4288.JPG" width="400" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;">Lucy, Sam, Harry, Ali, Jack<br />Approx 12 hours after Mayo pilgrimage, we boarded a plane to CO for spring break.<br />Another arduous and humbling journey - this time into the mountains. <br /><br /><span style="font-family: inherit;"> </span></span></td></tr>
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A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com12tag:blogger.com,1999:blog-7943363282669429191.post-38559689323534618202018-01-14T17:29:00.000-08:002018-01-14T17:46:28.117-08:00pause<span style="font-family: inherit; font-size: large;">A long and necessary pause was had since my last post...</span><br />
<span style="font-family: inherit; font-size: large;"><br /></span>
<span style="font-family: inherit; font-size: large;">We were all thrust into high gear when Jack's biopsy in late November came to a halt after finding two tumors on his transplanted kidney. Fortunately, Jack's team was relieved and yet baffled to discover that these tumors were not as they suspected, PTLD (post transplant proliferative disorder) which often points towards cancer. It was advised that we still meet with Oncology and that we would regroup after the holiday giving everyone a chance to pause and consider our options.</span><br />
<span style="font-family: inherit; font-size: large;"><br /></span>
<span style="font-family: inherit; font-size: large;">Oncology has since suggested two mixed epithelial and stromal tumors, related to cystic nephroma. We understand this scenario to be very obscure, less than 200 reported cases (typically only expressing on an adult kidney in it's 4- 6th decade). Jack is the only patient in the pediatric nephrology group with this condition. Oncology's solution is to remove the tumors to eliminate the possibility of this becoming cancer. This would be a significant, complicated surgery due to the location of the tumors being near other organs. The Nephrology team advised against this plan as Jack would presumably land back on dialysis this year as it involves removing too much kidney tissue. Hence, the conundrum and the pause.</span><br />
<span style="font-family: inherit; font-size: large;"><br /></span>
<span style="font-family: inherit; font-size: large;">We head back to U of M on Jan 23 to repeat MRI and Ultrasound and hopefully work our way towards an answer. Our hope is that these tumors are not growing. Really, my hope is that they are shrinking. Is that possible? I don't know... but it seems to me that a n y t h i n g is possible. So, I'm throwing that out there into the universe. Keep your thoughts, good vibes and prayers around this possibility. </span><br />
<span style="font-family: inherit; font-size: large;"><br /></span>
<span style="font-family: inherit; font-size: large;">"How is Jack?" you ask. I always take that question to heart and think to myself... "well, what part of him?" I think the same thing when someone asks me this question. Our mind, our heart, our body all send off different signals. The beauty, the peace, the balance is when they all converge. (This is my daily, moment-to-moment project). So, he is amazing, outstanding, a perfectly healthy 12 year old boy who is doing every single thing he wants to do (minus unloading the dishwasher, taking 20 pills a day and + getting blood draws). However, on the inside, his labs are at times unnerving and there are two tumors on his kidney that don't belong. So, he's great.. but, he's vulnerable as we all are in any given day. I choose, most days, to set the lab results and tumors aside until there is something actionable I can do. Fear or love, it's a choice - a daily one.</span><br />
<span style="font-family: inherit; font-size: large;"><br /></span>
<span style="font-family: inherit; font-size: large;">I choose love.</span><br />
<span style="font-family: inherit; font-size: large;"><br /></span>
<span style="font-family: inherit; font-size: large;">He would want me to add "Go Vikings!" (whew!)</span><br />
<span style="font-family: inherit; font-size: large;"><br /></span>
<span style="font-family: inherit; font-size: large;">(and obviously he gets his moves from me. duh)</span><br />
<span style="font-family: inherit; font-size: large;"><br /></span>
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A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com4tag:blogger.com,1999:blog-7943363282669429191.post-90966197101592347072017-12-05T09:40:00.002-08:002017-12-05T09:43:47.552-08:00"You will get tired, but not the road..."<span style="font-family: "verdana" , sans-serif; font-size: large;">Read this part S L O W.... "Problems will from time to time occur; this should not be surprising. When they do you will need to remind yourself you’re in for the long term, plodding forward, moving inexorably ahead. You can lie down in the path and throw a tantrum if you like, but when you are finished you will need to get up and start moving again. As my mentor was fond of saying “If you are walking down the road it is good to remember that the road is not going to get tired. You will get tired, but not the road.” The road is there, has always been there, will always be there. You will have to walk it, slow or fast, now or later. So p l e a s e p a c e yourself, determine how fast you can move in order to sustain that movement for however long you will need to sustain it. "</span><br />
<span style="font-family: "verdana" , sans-serif; font-size: large;">- Robert Svoboda </span><br />
<span style="font-size: large;"><span style="font-family: Futura-Bold; font-size: 12px;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">(Maybe read that above all over again)</span></span><br />
<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;"><br />Smack - right into my being these words arrive at me on day 3 of a yoga intensive in Tucson. These events for me are SO beyond physical - I was sore, but mostly from sitting in good company and conversing about consciousness and "The Work" of being a human. I felt like I had pretty good experience thus far and certainly the last two weeks shed light on every nook and cranny of my mind. These trainings come less often for me these days as the real teachers and teachings stare at me right in the face every day of my life in the form of my family. Yet, to be back in the room at Yoga Oasis and in Tucson were I have spent hours and hours over the last 18 years feels like balm to my heart. It wasn’t three days of glory and as balmy as a yoga intensive may sound. Any amount of work and any road traveled has bumps, sharp turns, and so on.<br /><br />Earlier in the week, I had pretty much resolved in my heart that I would need to cancel this trip. We were told with 90% certainty that Jack had PTLD (post transplant lymphproliferative disorder) which is on the spectrum of lymphoma. We were booked with oncology last Thurs @ 8am to discuss his chemo plan. My flight to Tuscon was at 8:45am for this same day. I was just getting over my tantrum and beginning to get with the program. Cancer. We are not the first to walk this road. It will be a long road but if anyone gets to hold that boys hand down this road, let it be me. Let it be us. </span><br />
<span style="font-family: "trebuchet ms" , sans-serif; font-size: large;"><br />Things were normalizing. A new norm of course. Jack went back to school. Harry and I went back to work with the oncology appointment looming in the morning. To everyone’s surprise, oncology calls and says that preliminary results show this is <u>NOT</u> PTLD. Oncology passed it back to the renal team for more study while we waited for final results over the next few days. Our appointment to discuss a chemo treatment plan that is in just 15 hours has been canceled. Every emotion passed through me and yet part of me went numb. The road was bright, unclear still, and I was tired. </span><br />
<span style="font-size: large;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">Jack came home from school that day and we told him the great news. I began packing for Tucson. I've never packed so light. I had carried so much for two weeks straight, I wanted to be free. (Note to self for future packing endeavors that this worked quite well). My mom and step-dad jumped into the car with their super hero capes on and a second round of Thanksgiving packed in their bags and took care of my family for a few days while I took a deep dive into my perfectly, imperfect timed yoga intensive.</span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Dr. Verghese (Jack's kidney doc) called yesterday to check in after final pathology reports confirmed two benign tumors. We are rescheduled with Oncology for <i>this </i>Thursday to discuss and make a plan to either treat or monitor these tumors. They would remove them but this is not ideal on a transplanted kidney. My impression is that is the BEST possible outcome and one we did not see coming. </span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">The road ahead is there, has always been there, and will always be there. I slept 12 hours last night. </span></span><br />
<span style="font-size: large;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">Thank you for your presence and support here. We will share more as we learn but for now I'm going to return to more normal things like dig out our Elf on The Shelf, Ted, and get back to convincing my kids that his magic is real.</span></span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">[And yes, Ted is wearing a Tito's vodka sweater. This was the only souvenir I landed in Tucson. My consciousness is knocking.... I must get back to work].</span></span><br />
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A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com8tag:blogger.com,1999:blog-7943363282669429191.post-80888273138023580382017-11-27T11:10:00.001-08:002017-11-27T11:10:32.590-08:00Biopsy on TuesAll business here ... 9am needle biopsy Tuesday morning. Thanks for staying close and for the huge rally of support. <div>
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Love,</div>
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Team Certain<br /><div>
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A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com1tag:blogger.com,1999:blog-7943363282669429191.post-13853837174098091882017-11-21T07:17:00.001-08:002017-12-05T09:42:46.710-08:00Still I Rise<span style="font-size: large;">Yesterday was hard. Our little bubble of "normalcy" popped. I knew it would at some point, it has to. This is nature - everything that comes together fall apart. Stability and change are always present. If you add a tiny grain of sand to another, the sand piles up (each day, a gift) - it eventually reaches a point of criticality but then that pile of sand falls back to the ground. It' been over three years since my last blog post...someone do the math here, but at least 1200 days. If you're just jumping in here, it's been over 4 years since Jack's <i>second </i>kidney transplant.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">My mind is crazy busy. I have secrets (everyone thinks we're healthy), I have fear and panic knocking down my door. I see my husband calm as a cucumber. I look into my sons brave eyes and see his innocence and his strength. We are at the Masonic Children's Hospital. We are each falling into our familiar roles. While Jack is focused on getting last night's Indiana Hoosiers basketball game on dad's phone, I am trying to check boxes, anything to move us forward to answers. I am doing stupid things- like canceling our ortho appointment for next week and casually letting yoga students that my class will be subbed tonight. I am snapped right into the moment of what could be our new norm.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Deep breath. I've got this... I remind myself.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Dr. Verghese, Jack's primary kidney doctor, intercepted me yesterday as I was walking into the hospital to help prep him for sedation for a kidney biopsy. No, the kidney biopsy is not a routine thing. Biopsy's are invasive and are only performed when there is a red flag. Labs have been off lately and we were considering growth hormones which brought us to this moment. Dr. V pulls me into a private room and tells me to sit down. I am immediately n o t i n m y b o d y. I am witnessing someone else's story here...</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">"The ultrasound that we did in preparation for the biopsy revealed a mass. We were not expecting this at all. We need to aggressively rule out cancer. It could be anything. It could be fatty tissue, it could have been there from the beginning and we missed it, it could be benign, it could be malignant. The only way to know is to biopsy. There is minimal blood flow in the mass which is in his favor. The patchy shape of the mass is not typical and therefore in his favor. But, he does have Epstein Bar Virus, which is a marker for cancer with transplant kids". I remember hearing about the elusive EBV virus during his first transplant 10 years ago. I put that little secret in a box waaaay back in my head.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Oncology arrives shortly later. This is not happening. Oncology is here? She is lovely and I want to not like her because I need to put my anger somewhere. But she comforts me in an odd way and even makes me laugh as she sees my hands typing in "Post Transplant Lymphoproliferative Disorder" (PTLD) into the Google machine as I attempt to maintain eye contact. "Be careful which websites you go down, Mom." </span><br />
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<span style="font-size: large;">MRI follows at 4:00. The MRI confirms another mass. This is real and I'm slowing sinking in and letting the food show up at the door, trying to remember the password to this blog, and keep it cool for Jack. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Dr V. greets us and tells us that she <i>thinks</i> this is PTLD and the only way to confirm is via biopsy. She wants to know with absolute certainty what we are dealing with. She wants to do an open biopsy versus the "simple" needle in the abdomen, stick a band-aid on the wound option. The transplant surgeon does not not want to do an open biopsy for obvious reason and reasons I probably can't handle knowing at this point. So while she, our transplant surgeon, and oncology debate this overnight we go home. I make soup -- because what else do you do when soup has already been delivered?? I let myself bury my emotion in this pot of soup and listen to Sam and Lucy (Jack's sibs) carry on like any other day.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Now, we wait for the call to see who wins the biopsy plan debate. Jack goes to school, Harry and I go back to work. This biopsy will most likely happen this week but of course it's complicated because of the holiday. She wants it as soon as possible - she would do it today if there was room in the operating room and agreement amongst the team. She tells me an angel brought Jack her for this ultrasound. Part of me thinks "duh" and part of me thinks "bleepity bleep bleep bleep". Doubt trains faith, according to my previous blog post, Jan 2013.</span><br />
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<span style="font-size: large;">I don't carry secrets well so hence this post. I need to keep it real and clear this out. I also need to keep this out of my yoga studio as much as possible because you show up for you, not for me. Most importantly, I also need to protect my children and keep it "normal" for Jack, Sam (yes, Jack has a twin bro), and Lucy as long as I can. So please help us with that. And if you run into Harry, I'm sure he will tell you Jack is just fine. He exudes more confidence than maybe necessary around Jack's health. I am grateful for that.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Please keep us in your thoughts, prayers, sun salutations - however it is you "connect".</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Not sure if this is an approved website from Oncology, but this is a decent link at first glass that explains PTLD which we suspect we are dealing with: https://www.kidney.org/atoz/content/post-transplant-lymphoproliferative-disorder-ptld</span><br />
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<span style="font-size: large;">Unedited, raw, slightly over caffeinated, phone ringer on high, waiting for Dr V. to call, full of fear and hope, stabilizing and changing. Still I rise.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Love,</span><br />
<span style="font-size: large;">Ali</span><br />
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<br />A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com18tag:blogger.com,1999:blog-7943363282669429191.post-5621603321220096652014-06-25T15:58:00.002-07:002014-06-25T15:58:38.144-07:00Happy kidneyversary!<div class="separator" style="clear: both; text-align: center;">
June 7, 2014 -- one year later. pinch me. </div>
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<br /><br />A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com9tag:blogger.com,1999:blog-7943363282669429191.post-56273882693240348012013-12-21T21:46:00.000-08:002013-12-21T21:59:37.772-08:00A WORLD OF CONTRAST<div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #262626; font-family: Arial; font-size: 15.0pt; mso-bidi-font-family: Arial;"><o:p> </o:p></span><span style="color: #262626; font-family: Arial; font-size: 15pt;">I was pulling out of the U of M
Amplatz Hospital parking garage yesterday when my phone went “ting”. A text
arrived from Mekea (Jack’s donor) revealing pictures of the recent article
written in Mpls/St Paul mag by her sister, Megan Collins. I could feel my heart
accelerate and my vision blur from the tears of joy. It was sweet to revel in
such a beautiful story again. And yet, my heart was heavy, as Jack had been
admitted early that morning for a biopsy on his new kidney to determine if we
were dealing with a rejection episode. Once again, Mekea and I collide in a
moment of divine perfection.</span></div>
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<span style="color: #262626; font-family: Arial; font-size: 15.0pt; mso-bidi-font-family: Arial;">This wasn’t the first time we were
admitted for a biopsy on the new kidney. The first one was October 15th – just
after the kids were settled back in school and things were starting to feel
normal at home again. Labs had been elevated and as promised by Jack’s doctor,
they would act fast with any indication of possible rejection. He was NOT in
rejection (whew!) but days later we learned that he had the BK virus.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="color: #262626; font-family: Arial; font-size: 15.0pt; mso-bidi-font-family: Arial;">The BK virus is a common virus,
70-90% of adults are exposed to. It’s a virus that really doesn’t express
outward symptoms but nephrologists know it is a real threat to kids that are
immuno-compromised and have transplanted kidneys. Simultaneously, nephrologists
don’t yet understand BK well enough yet to deal with it with clarity and
confidence. The BK virus is known to cause scarring on the kidney – which
becomes a chronic form of rejection, something that is irreversible.<span style="mso-spacerun: yes;"> </span>The treatment for this virus is to
lower the level of immuno-suppressive drugs so that there is just enough immune
system to clear the virus but not too much so that he starts to reject the
kidney. It’s a slippery slope. The BK virus, along with our emotions, has
bounced around like a yo-yo since mid-October.<span style="mso-spacerun: yes;"> </span>However, the last 3 weeks showed we were making great
progress. The BK virus was at an all time low. <span style="mso-spacerun: yes;"> </span>The trend was favorable but we also saw an acute change in
Jack’s creatinine</span><span style="color: #262626; font-family: Arial; font-size: 15.0pt; mso-bidi-font-family: Arial;"> level. Hence,
biopsy #2 got scheduled yesterday, Dec 20th.<o:p></o:p></span></div>
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<span style="color: #262626; font-family: Arial; font-size: 15.0pt; mso-bidi-font-family: Arial;">Today, we learned that Jack is having
some cellular rejection. The shock is wearing off or perhaps just pushed to the
background to deal with at another time. For now, we just rise up, meet the
situation, and normalize it for our family as best as we can. Tonight, we dined
in bed at Amplatz Hospital and watched Polar Express. It was the best snuggle
fest I have had with the kids in awhile. His treatment of IV steroids has begun
(only 30 min/day) for the next several days and then hopefully he can be
discharged or continue with the steroid protocol at home. We caught this
rejection episode fast so we are hopeful that we can reverse it and get on our
merry way. Yes, acute rejection can be stopped. However, it is complicated
because of the BK virus that lurks in the background. If all goes well, he’ll
be home by Xmas Eve. <o:p></o:p></span></div>
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<span style="color: #262626; font-family: Arial; font-size: 15.0pt; mso-bidi-font-family: Arial;">In other news, the hems on Jack’s
uniform pants are all being let down over holiday break. He has grown
substantially.<span style="mso-spacerun: yes;"> </span>He is playing
basketball, signed up for ski lessons, rainbow looming, eating ANYTHING he
wants, and scheming a bit to make youtube videos that will show kids how to
take meds.<span style="mso-spacerun: yes;"> </span>The closets have been
cleansed of medical supplies from his feeding tube and dialysis catheters. The
blood pressure monitor no longer rules the house.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="color: #262626; font-family: Arial; font-size: 15.0pt; mso-bidi-font-family: Arial;">Coincidentally, today is the winter
solstice, the longest night of the year, our darkest day.<span style="mso-spacerun: yes;"> </span>(Would you even believe me if I told
you the dishwasher broke today and the ipad cracked!?) We are talking a seriously
dark day. No<span style="mso-spacerun: yes;"> </span>- I am kidding.<span style="mso-spacerun: yes;"> </span>I’m grateful for my journey so I have
some good, real perspective when those things happen. <span style="mso-spacerun: yes;"> </span>The truth is, we live in a world of
contrast. Darkness serves as much as light. As I see it, the solstice is the
rumbling of new beginnings, a time to steep in the dark and make our wishes for
the next cycle. <o:p></o:p></span></div>
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<span style="color: #262626; font-family: Arial; font-size: 15.0pt; mso-bidi-font-family: Arial;">Dream big. <o:p></o:p></span></div>
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<span style="color: #262626; font-family: Arial; font-size: 15.0pt; mso-bidi-font-family: Arial;">Keep us in your hearts and prayers.<o:p></o:p></span></div>
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<span style="color: #262626; font-family: Arial; font-size: 15.0pt; mso-bidi-font-family: Arial;">Love, </span></div>
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<span style="color: #262626; font-family: Arial; font-size: 15.0pt; mso-bidi-font-family: Arial;">Ali</span></div>
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<span style="color: #262626; font-family: Arial; font-size: 15.0pt; mso-bidi-font-family: Arial;">Thank you Megan for writing such a
beautiful story in Mpls/St. Paul mag. <o:p></o:p></span></div>
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<span style="color: #262626; font-family: Arial; font-size: 15.0pt; mso-bidi-font-family: Arial;">Thank you Sarah Hrudka for capturing
the magic in your photography. <o:p></o:p></span></div>
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<span style="color: #262626; font-family: Arial; font-size: 15.0pt; mso-bidi-font-family: Arial;">Thank you Mekea for giving life to my
son and awakening the hearts of our community. I hope more people follow in
your path.<o:p></o:p></span></div>
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Polar Express snuggle fest</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIkhUw9SpxrNK9_FlGaqcgmQcm_rnsE3g0pUEVYbNQrNvDlDM7LFMIhXXuKQfIxd846NyzVzdX1MZVM4pl3S55VauqGcpbCFq8qYLduqxfVi7AGhW8AXCtI_e0NFUfRhyHw8pB8bLjq2g/s1600/photo+2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIkhUw9SpxrNK9_FlGaqcgmQcm_rnsE3g0pUEVYbNQrNvDlDM7LFMIhXXuKQfIxd846NyzVzdX1MZVM4pl3S55VauqGcpbCFq8qYLduqxfVi7AGhW8AXCtI_e0NFUfRhyHw8pB8bLjq2g/s320/photo+2.JPG" width="240" /></a></div>
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Jack becoming a Wii master at Amplatz. (open for visitors. pls call me first)</div>
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A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com4tag:blogger.com,1999:blog-7943363282669429191.post-4920787463536856372013-06-06T15:16:00.006-07:002013-06-06T15:16:53.362-07:00no words<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: inherit;">Hearts are full and beating faster than usual. For lack of words, I share these pics + video below. Surgery will begin around 7:30 am tomorrow, June 6. Please hold these families close to your heart. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh08DqPVexilPc320lO8t7OsI21vBENMv8e8bSJfQrLsDTGuhW8L9V3sZ-_pE-sW4HA8h0Zlw4jFJEJaBPxmjaP_Lvm_PWj8EuRGx2JJEQguSh_8oekx4RUQPMp4XqiFL-IU5VUUyWS-1A/s1600/DSC_0235.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><br /></a><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/IAUH5hG5ALM?feature=player_embedded' frameborder='0'></iframe></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRaQYdfAg2645rQCvdR-GfUcrsrB1eFLVBHmEieKXePdNnLX8s9565SZzC_SwU_9ej4RDun5qufo_JJzKZMwrzrCiB7wsR4pQyOucD9R7DplFYkn4YBy3qGNpYlfEsfJjfB6Yr0dsMhcY/s1600/photo+copy+2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRaQYdfAg2645rQCvdR-GfUcrsrB1eFLVBHmEieKXePdNnLX8s9565SZzC_SwU_9ej4RDun5qufo_JJzKZMwrzrCiB7wsR4pQyOucD9R7DplFYkn4YBy3qGNpYlfEsfJjfB6Yr0dsMhcY/s400/photo+copy+2.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><span class="Apple-style-span" style="font-family: Georgia; text-align: -webkit-left;"><span style="font-family: inherit; font-size: small;">One thing that is clear to me is HOW DEEPLY we are meant to be in community. I first connected with our kidney donor, Mekea, over a random pedicure in the fall of 2012. Two mothers walk in, each with an iced latte in hand, seeking a little bit of solitude. We collided a few other times at the park, pre-school, and at Lifetime Fitness. She is my neighbor, a mother of 3, my friend, the person that gives life to my son again. When we sat down this past Sunday night to discuss the journey ahead, we glanced down at our feet and, of course, we had the exact same shade of polish on.</span></span></span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_8nQ9TM6GN-lJVcnaR7Gv3G_fUpDOIJKcGvLtxs-e0pyC5vdZoZZqRmsVG3wgjLUsEb3tFZz-0cTF_SWuXX68ot0UmBZWxgPilhYAOODtB6aNdILDcd3l-FgVpeEYOHh8Ae-FG4b7nPQ/s1600/DSC_0236.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="424" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_8nQ9TM6GN-lJVcnaR7Gv3G_fUpDOIJKcGvLtxs-e0pyC5vdZoZZqRmsVG3wgjLUsEb3tFZz-0cTF_SWuXX68ot0UmBZWxgPilhYAOODtB6aNdILDcd3l-FgVpeEYOHh8Ae-FG4b7nPQ/s640/DSC_0236.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: small;">Jack + Mekea = a perfect match</span></td></tr>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh08DqPVexilPc320lO8t7OsI21vBENMv8e8bSJfQrLsDTGuhW8L9V3sZ-_pE-sW4HA8h0Zlw4jFJEJaBPxmjaP_Lvm_PWj8EuRGx2JJEQguSh_8oekx4RUQPMp4XqiFL-IU5VUUyWS-1A/s1600/DSC_0235.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="424" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh08DqPVexilPc320lO8t7OsI21vBENMv8e8bSJfQrLsDTGuhW8L9V3sZ-_pE-sW4HA8h0Zlw4jFJEJaBPxmjaP_Lvm_PWj8EuRGx2JJEQguSh_8oekx4RUQPMp4XqiFL-IU5VUUyWS-1A/s640/DSC_0235.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption"><span style="font-family: inherit; font-size: small;">Mama bears + her babies (minus one cub)</span></td></tr>
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A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com1tag:blogger.com,1999:blog-7943363282669429191.post-9795664434799661662013-05-09T07:54:00.002-07:002013-05-09T07:54:21.241-07:00There is a crack in everything, that's how the light gets in. - Leonard Cohen
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<span style="font-family: "Century Gothic";"> </span><span style="font-family: 'Century Gothic';">“Soy or Skim? “
she asked. </span><span style="font-family: 'Century Gothic';"> </span><span style="font-family: 'Century Gothic';">And… </span><span style="font-family: 'Century Gothic';"> </span><span style="font-family: 'Century Gothic';">the tears came rolling out. </span><span style="font-family: 'Century Gothic';"> </span><span style="font-family: 'Century Gothic';">“I stopped at the coffee shop and
couldn’t remember which one you liked, so I bought both.</span></div>
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<span style="font-family: "Century Gothic";">(Silence. Gulp)<o:p></o:p></span></div>
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<span style="font-family: "Century Gothic";">“What…do you have
news!?!” she asks.<o:p></o:p></span></div>
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<span style="font-family: "Century Gothic";">“No, nothing.
Everything is the same. No news. Everyone’s fine. Oh my gosh… I’m fine, really.
Oh, wow… um, skim please”.<o:p></o:p></span></div>
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<span style="font-family: "Century Gothic";">All it took was
one more sweet little gesture and my cup overflowed. I needed the moment to release some tears and move forward
again. It was an opening that I could feel coming but I couldn’t find a convenient
place or time. As a mother, a teacher and a wife, I feel I have to be “on” all
the time. Actually, I don’t… but I
choose to. I can’t hit the snooze
button, stay in sweats, and pull the sheets over my head for the day. Well, I could, but I choose not to. While
the thought of that sounds so rebellious and delicious, I wouldn’t last more
than 10 minutes in bed. I said to Harry last night after returning from
dialysis… “I just need one of those days where I don’t have anyone depending on
me to realize that I am right where I need and want to be”. <o:p></o:p></span></div>
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<span style="font-family: "Century Gothic";">Yesterday was
just another Tuesday in dialysis except it was 80 degrees out there and we were
IN there. Jack was relatively
content, certainly more than me.
The only difference I could see is that I had an agenda and he
didn’t. I wanted to be running
around outside barefoot in shiny new blades of grass and grilling on the back
deck with the fam. (Yes, it’s a little too Norman Rockwell… but, I just craved
a “normal” night with everyone home). Instead, I was munching on animal crackers with Jack waiting for
some miraculous visit from a doc to say “we found it!”. Surely, the doc had
already gone home for the day but I still found myself fantasizing about the
possible scene. To add to my
discontentment, Jack arrived in dialysis 2 kilos over goal weight because of excess
sodium and fluid intake, which meant we earned an extra day of dialysis this
week. The only obvious choice at
this point was for me to soften, drop the expectations, and get with the
program. Freedom. <o:p></o:p></span></div>
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<span style="font-family: "Century Gothic";">I am constantly invited
to give up the notion that my highest, deepest desires lie outside of me,
outside of this hospital, outside of this chapter in our lives. I practice
being at peace with what is. Some
days… it’s easeful and other days it’s daunting. Yet, this is my work, my
dharma, my choice to stay empowered within my experience. I know that when we do get to the other
side of transplant, other challenges will meet us. It’s not meant in a Debbie Downer kind
of way – it’s just life. The waves
will keep coming. I can only hope
to find some stillness in the pulsation and get better at riding the waves. <o:p></o:p></span></div>
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<span style="font-family: "Century Gothic";">For a boy on
dialysis, Jack is doing well. However, he has had an acute change in his blood
pressure last month, which is disheartening and highly stressful. We have started
a new med that is dosed every 8 hours which adds some complexity to the
schedule here. The docs are now reconsidering a nephrectomy (kidney removal) at
the time of transplant. </span><span style="font-family: "Century Gothic";"> In other news, we conquered pneumonia last
month and Harry’s 14-day business trip to Europe. Thank god for the grandmas who came to town and carried us
through. Still bowing down to nana
(Harry’s mom) who managed to get Jack to dialysis and back in that nasty April
snowstorm. <o:p></o:p></span></div>
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<span style="font-family: "Century Gothic";">I do feel like we
are getting close on a match. However,
because of privacy issues, the docs will not share ANY information other than
“we have some good possibilities”. Having this tiny sliver of information is SO encouraging for
us, but also insanely consuming. I
assume every phone call is THE one. I wake up and say “THIS might just be the
day” and it’s not. I see pennies jumping onto my path and think they are signs telling me
we are close. I swear I even saw a kidney in the top layer of foam in my latte yesterday
on the way to dialysis. No joke…
Jack confirmed my vision. In the
event that the current “good possibilities” do not work out, Jack will be
activated on the national kidney registries for a deceased donor as well as the
kidney paired exchange program. This will give him national exposure but there
are over 90k people on this list also in line for a kidney. If activated on the
list, his team at the U of M will continue to process new calls for a living
donor as this is THE BEST possible scenario for Jack. <o:p></o:p></span></div>
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<span style="font-family: "Century Gothic";">It feels good to
have let down some tears, grieve a bit, and create new space inside myself. I know in my heart of heart, this is
where I am meant to be. I am
honored and grateful to hold Jack’s hand in this journey.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">THANK YOU for the
continued love bombs on our back porch, the meals, cards, prayers, support on
<a href="https://www.facebook.com/JackCertainKidney">facebook</a>, and contributions to Jack’s kidney fund. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Thank you to the
first graders for keeping Jack’s Saturday morning bright. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Thank you to Jeni
Shoemate for watching my daughter every Tues when I go to dialysis. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Thank you to everyone
who has called the U of M and considered donation.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Thank you to the
two donors who were nearly THE one. You know who you are and you gave us the amazing gift of knowing a match is out there.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Lastly, thank you for the
skim latte, the tears that followed, and the expansion of conciousness that I
needed to keep moving forward with confidence.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">I can only hope
to return this love back some day. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">With great love,<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Al<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com2tag:blogger.com,1999:blog-7943363282669429191.post-39402331733924105822013-03-22T16:17:00.000-07:002013-03-24T20:40:46.937-07:00 Hush the Rush<!--[if gte mso 9]><xml>
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<span style="font-family: 'Century Gothic';">We are approaching the end of month 3 on
dialysis. (You would think by now I would have the spelling down... D I A L Y S
I S. Really, try it… not so easy). I’m in such a hurry all the time
these days that every time I type that word, spell check stops me in my tracks.
Another divine smack to: slow down and hush the rush. </span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';">What was initially overwhelming,
unfamiliar and destabilizing, feels more comfortable and routine. I pick
up Jack from school at 1:45 on Tuesdays, we stop for a latte and treat at Dunn
Bros, and then haul our 3 backpacks filled with gummy bears, animal crackers,
games, books, school work, laptop, bills, and just the usual mess of papers on
my desk. </span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';">Harry (Dad) has a similar routine on
Thursdays but occasionally inserts a conference call into his drive from the
school to the hospital and cracks down on homework. We typically arrive
home with glazed eyes and tight hips around 7:30pm and are greeted by a meal
that has been prepared by a family friend. Grateful. </span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';">The 20-minute backpack unloading session
begins, lunchboxes get emptied, meds get prepped, feeding pump gets loaded,
growth hormone injection gets prepped, and search parties ensue for snow gear
and library books that have gone MIA. While backpacks and lunches begin
to get re-loaded for the next day, Jack gets wrapped in saran wrap for his
shower. Sam and Lucy jockey for their own position in the bathroom. Bedtime
negotiations and stalling tactics begin, patience levels get tested, we say
prayers, and then lights out. Whew!</span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';">The week is such a dance but we have a
good rhythm right now. Everyone is healthy and we continue to have a massive
stream of support and light shining on our family. </span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';">On Saturdays, the wondrous and brave
first-graders are now taking Jack to dialysis. (I know...can you believe that?
Sniff Sniff.) Escorted by their parents, these classmates are bringing the fun
and and an opportunity for mom and dad to focus on Sam and Lucy. This has
been enormously, fantastically, awesome for all of us. </span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';">No news yet on a kidney. The office
has some interesting possibilities I hear and many people to still consider.
Patience, patience, patience. THE GOOD NEWS…. it is looking
like Jack will NOT need a nephrectomy (kidney removal) prior to transplant! His
doc had prepped us for this possible scenario as he had such an enormous amount
of protein dumping in his urine. If dialysis didn’t shut that protein
leak off, there was no way his body would receive the next kidney. This surgery
was also very complicated and more difficult than a transplant surgery.
Fortunately, dialysis is making big improvements for him in this department and
we are hoping to go right to transplant when it is time.</span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';">The other update to share is that Jack has
started daily growth hormone injections. My little man has not grown a smidge
in 18 mos! If you miss a growth spurt, you can't make it up later on.
Additionally, kidneys do not like growth hormones so we have not had the
opportunity to use these meds until now. (I suppose the blessing of a
kidney that is already unhappy). So, we are seizing this moment to try to
help him grow. It takes 3 - 6 months for these meds to have an effect and
they will be discontinued once once he has a new kidney. If you see my
child wearing "floods" (trousers too short), please give him a
"high five". It's about time this boy's outer body catches up
to his inner body brightness.</span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';">Thank you EVERYONE for making an indelible
imprint in our hearts. While this is challenging time, I welcome the full
spectrum of life experience. For me, this is is the point of life... to live
fully. </span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';">Love + Gratitude, </span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';">Ali</span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';"><b>P.S.</b> - Save the date and stay tuned
for more details: April 13 @ <span style="color: #262626;"> 1pm
to "<b>Give, Live, Love</b>". This will be a family friendly yoga event
hosted by my friends, Nan + Jes, founders of <a href="https://www.facebook.com/GorillaYogisFun?group_id=0"><span style="color: #2a4588; text-decoration: none; text-underline: none;">Gorilla Yogis</span></a>.
This will be a donation based yoga class to raise awareness for organ donation
and support Jack's journey. Details TBA <a href="https://www.facebook.com/GorillaYogisFun?fref=ts">here</a>. </span></span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';"><b>LASTLY, </b> here is a little video that
my friends, Mary O'Brien and Kelsey Anderson, created. It's a
glimpse into our world at the hospital. </span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';"><span style="text-decoration: none;"><a href="https://www.youtube.com/watch?v=lVKVHvQJl84&hd=1">https://www.youtube.com/watch?v=lVKVHvQJl84&hd=1</a></span><o:p></o:p></span><br />
<span style="font-family: 'Century Gothic';"><br /></span>
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<br />
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<span style="font-family: 'Century Gothic';"><b>Follow our journey here @</b> <a href="https://www.facebook.com/JackCertainKidney">https://www.facebook.com/JackCertainKidney</a></span><span style="font-family: "Century Gothic"; font-size: 14.0pt; mso-bidi-font-family: Times; mso-bidi-font-size: 16.0pt;"><o:p></o:p></span></div>
<!--EndFragment--></div>
</div>
<!--EndFragment-->A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com0tag:blogger.com,1999:blog-7943363282669429191.post-38062410558509280812013-02-06T20:28:00.000-08:002013-02-06T20:36:18.371-08:00the waiting place<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';">No news yet on a suitable kidney match for Jack.
</span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';">We expect to be hanging out here for at least a
few months on dialysis waiting for THAT phone call. </span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';"> Words can't quite capture how grateful we are
for all the support and continued phone calls to help Jack out. I<span style="color: #262626;">f you or anyone you know would like to find out if you
might be a match for Jack, you can call the University of Minnesota Transplant
Office @ 612.625.5115; press option #1</span></span><span style="font-family: 'Century Gothic';"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';"><span style="color: #262626;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-family: 'Century Gothic';"> Some scenes... (notice the smiles)</span><span style="font-family: "Century Gothic";"><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";"> <o:p></o:p></span></div>
<!--EndFragment--><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgogywriu6Kr8LfxbdPct0stUeyHOLL_l26-W5HI8qwLJWBy5pGtMwgbyMTM74uRA60ApMnJc9mJWOLyE30cI3wODxsA9vC3sSTtGJL-eqpZOPO7cl7gBkla2qC7sIpLisLXHwcf2Sb1g/s1600/photo+3+copy.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgogywriu6Kr8LfxbdPct0stUeyHOLL_l26-W5HI8qwLJWBy5pGtMwgbyMTM74uRA60ApMnJc9mJWOLyE30cI3wODxsA9vC3sSTtGJL-eqpZOPO7cl7gBkla2qC7sIpLisLXHwcf2Sb1g/s640/photo+3+copy.JPG" width="478" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif; font-size: small;">Jack and his buddy Levi at dialysis</span></td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSM1CTIEB1TXPm6kuxnCEsLa6t3LG3T6tAeVOMRw6LluDByTXhd8Yr__u83B9ViJroHhq6Orgk2D0J1Rze_WGpAe-0Z_yJ5jbfjV8G9XuuGfm0PkcMLNIGUmQw4XvfdD0TddWv_cXV-Qk/s1600/photo+3.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSM1CTIEB1TXPm6kuxnCEsLa6t3LG3T6tAeVOMRw6LluDByTXhd8Yr__u83B9ViJroHhq6Orgk2D0J1Rze_WGpAe-0Z_yJ5jbfjV8G9XuuGfm0PkcMLNIGUmQw4XvfdD0TddWv_cXV-Qk/s640/photo+3.JPG" width="480" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif; font-size: small;">Jack's new buddy (angel in disguise) Heather</span></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWtk5WRCZpCBGe25nGoxB-xumF7U4YEOmei9HQ-E2cUCTNWdPqadwlLMeN3iWkxrzjUf4VuQlYHHDGy-FoFsGLxcnzCgjJhJbkqPa4b_FugKSV-1jJXCMm97tedqxA8zX8mmLIJC3qKO4/s1600/photo+1+copy.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWtk5WRCZpCBGe25nGoxB-xumF7U4YEOmei9HQ-E2cUCTNWdPqadwlLMeN3iWkxrzjUf4VuQlYHHDGy-FoFsGLxcnzCgjJhJbkqPa4b_FugKSV-1jJXCMm97tedqxA8zX8mmLIJC3qKO4/s640/photo+1+copy.JPG" width="480" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif; font-size: small;">Still smiling after 8 hrs in the hospital this day.</span></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPm-mLns08L_jDHJM6anYLwtsPsQYNZvdN1lMF9hoe65ycci2hBnXqrdF8gGS5jTVUEownA6Bfu6AQ6CyysB_7Yhv9K0brVBgSx8tXyGECe6abAobwdnIiwPYAQwh5plX3sF_4ecFASs8/s1600/photo+copy+2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPm-mLns08L_jDHJM6anYLwtsPsQYNZvdN1lMF9hoe65ycci2hBnXqrdF8gGS5jTVUEownA6Bfu6AQ6CyysB_7Yhv9K0brVBgSx8tXyGECe6abAobwdnIiwPYAQwh5plX3sF_4ecFASs8/s640/photo+copy+2.JPG" width="480" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif; font-size: small;">Dialysis starts out this way...</span></td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8KlNL6zi23tmRrlss8fYEkA1YB0WVX3DKwLYIfYC_Nhl5bV-r3oaidy90XKoxot62rAmbgeyDB-79KQdusxzoxkUAaYYJGZJl3J6DrENFqnvhfJpUXpczCKxKMAncoNhzUIOIgHdJprU/s1600/photo+2+copy+2.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8KlNL6zi23tmRrlss8fYEkA1YB0WVX3DKwLYIfYC_Nhl5bV-r3oaidy90XKoxot62rAmbgeyDB-79KQdusxzoxkUAaYYJGZJl3J6DrENFqnvhfJpUXpczCKxKMAncoNhzUIOIgHdJprU/s640/photo+2+copy+2.JPG" width="480" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif; font-size: small;">and often ends this way.</span></td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEZmbbe9VojZDCAq185Urrs-sTauMUNlYVeg4HD6nxLOM8bx80j8mrOe7p5FH9rglZ8EDFu6T0v6AgjZ3itQCuq2IE-FuCs2nZxYUQE-xEVo7qFs7X7_KQsuB0NPO9mBeKrU9_NkTO_lw/s1600/photo+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEZmbbe9VojZDCAq185Urrs-sTauMUNlYVeg4HD6nxLOM8bx80j8mrOe7p5FH9rglZ8EDFu6T0v6AgjZ3itQCuq2IE-FuCs2nZxYUQE-xEVo7qFs7X7_KQsuB0NPO9mBeKrU9_NkTO_lw/s640/photo+1.JPG" width="480" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif; font-size: x-small;">The light beaming down on his head here is pretty damn perfect.</span></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXnyWSWBXZiOjjNPsdAYXT6J6AllRDBjh-dh85sSwTA9Zj99cTXFriwpJGRSNhztQWuQiQyucV0a9EL3bm_Zf6QXIVJXi-ZXdt7v5FVyw5rfhWst68QUUe7SwACAOQvp3lMJ8uVTiTg5w/s1600/photo+2+copy.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXnyWSWBXZiOjjNPsdAYXT6J6AllRDBjh-dh85sSwTA9Zj99cTXFriwpJGRSNhztQWuQiQyucV0a9EL3bm_Zf6QXIVJXi-ZXdt7v5FVyw5rfhWst68QUUe7SwACAOQvp3lMJ8uVTiTg5w/s400/photo+2+copy.JPG" width="300" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif; font-size: x-small;">We wear these cool masks at the beginning and end of dialysis when his lines are exposed</span><span style="font-family: Verdana, sans-serif; font-size: small;">. </span></td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8KlNL6zi23tmRrlss8fYEkA1YB0WVX3DKwLYIfYC_Nhl5bV-r3oaidy90XKoxot62rAmbgeyDB-79KQdusxzoxkUAaYYJGZJl3J6DrENFqnvhfJpUXpczCKxKMAncoNhzUIOIgHdJprU/s1600/photo+2+copy+2.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Verdana, sans-serif;"><br /></span></a></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC4y-OfHaHnYX5y5y1uBjDAmjB__A3l0iDOe1ywZbkvw9CMkgd7SsaNgDuJzLlfNkuNaBecblcVRSXAJRgVx-UYbwdXlsgqvcip35QwyxMkS-f-Op6KmmSLyAP4gY4Sql4Sjku_J9GBTA/s1600/photo.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC4y-OfHaHnYX5y5y1uBjDAmjB__A3l0iDOe1ywZbkvw9CMkgd7SsaNgDuJzLlfNkuNaBecblcVRSXAJRgVx-UYbwdXlsgqvcip35QwyxMkS-f-Op6KmmSLyAP4gY4Sql4Sjku_J9GBTA/s640/photo.JPG" width="480" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif; font-size: small;">Seriously?! I didn't even pay him to do this picture. </span></td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt2sJzvY1bMgtoEDMYZUIo45Eho2OKzlVYG_vt7ajxHCpPNDK3JowGLYDxVRVv4RR0ENd33GdmbBndHcqOuFRnOdpoPErNWgWMRpyW4v8D4DssMdYMjdtFFnvLn76D77lX8Q7cGUmiDCI/s1600/photo+copy.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: Verdana, sans-serif;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt2sJzvY1bMgtoEDMYZUIo45Eho2OKzlVYG_vt7ajxHCpPNDK3JowGLYDxVRVv4RR0ENd33GdmbBndHcqOuFRnOdpoPErNWgWMRpyW4v8D4DssMdYMjdtFFnvLn76D77lX8Q7cGUmiDCI/s400/photo+copy.JPG" width="400" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Verdana, sans-serif;"><span style="font-size: small;">Team Certain<br /><br /></span></span>
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<span style="font-size: small;"><span style="font-family: 'Century Gothic';">Please "LIKE" Jack's FB page <a href="https://www.facebook.com/JackCertainKidney">https://www.facebook.com/JackCertainKidney</a> and become
a follower here on this blog by clicking "join this site". You will
receive automatic updates when posts are made. If we continue to shine light on
Jack's story, my hope is that is that the future is brighter for all those that
follow in his footsteps. </span><span style="font-family: "Century Gothic";"><o:p></o:p></span></span></div>
<!--EndFragment--><span style="font-size: small;"> </span></td></tr>
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<br />A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com7tag:blogger.com,1999:blog-7943363282669429191.post-88262394644571021092013-01-19T12:01:00.000-08:002013-01-19T12:04:33.716-08:00Doubt trains faith<!--[if gte mso 9]><xml>
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<span style="font-family: "Century Gothic";">I admit…. I lost
faith. I have always considered myself to be unshakeable in this virtue. I have always trusted in the flow of
life, the subtle ways that grace reminds me that I am deeply supported no
matter how uncertain or difficult life presents itself. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Hearing that Harry
could no longer donate (after thinking that was a slam dunk all these years),
hearing that we needed to begin dialysis after the docs were diligently trying
to avoid this scenario, and watching my son lose ground everyday – I was
slowing melting inside. I was filled with doubt. I was now beginning to explore
every possible scenario, every dark corner in my mind (including the worst
case) and it was exhausting me. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">In effort to get
my feet plugged back into the ground, I followed through with my plans to go to
Tucson for a yoga workshop between Xmas and NYE. I have attended this 3-day intensive for many years. It’s my time to be a student, to get
clarity on the year ahead, and to be in really great company. Harry assured me
that he would be fine and instilled enough confidence in me to pack my
bag. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">By the time I had
landed in Tucson, Harry was driving Jack to the ER. I was crushed. Doubt,
guilt, sadness consumed me. I
should have stayed home. After a
chest x-ray and a meeting with his doc, Jack and Dad were advised to go back
home and get better in preparation for surgery in a few days. Relieved. Somewhat.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">By the time I
landed on my mat, (day 2 of the workshop) I heard the words “doubt trains
faith” fly out of the teachers mouth. I settled. It was one of those subtle
smacks of grace where you feel like the teacher (Life) is talking directly to
you. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">The radical
affirmation of my doubt inspired me to step up, be strong again, and come back
home with a fresh set of eyes. </span><span style="font-family: 'Century Gothic';">“Re-entry” is
never easy after a yoga retreat.</span><span style="font-family: 'Century Gothic';"> </span><span style="font-family: 'Century Gothic';">The
real practice is always coming back home. Coming back home to surgery,
dialysis, and our new life was wildly intimidating but I felt ready. Scared and
anxious, but also ready.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Fast forward three
weeks to today, Jan 19….<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Jack is back in
school, adjusting to his new dialysis routine, and healthier than he has been
in months. Dialysis pulls so much
fluid (approx 3lbs!) and waste out of his body that his kidney couldn’t do on
it’s own. He still has waves of
discomfort and radical fatigue but this is SO much better than what we were
dealing with before dialysis. On his “off” days from dialysis, you can see the
fluid return to his body and the fragile place that he lives in. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">We do not yet
have a match but gain confidence daily that we will find a kidney. Harry was
also recently approved to participate in the Paired Exchange program (<a href="mailto:https://www.facebook.com/JackCertainKidney">details on Jack’s FB
page)</a> which gives Jack national exposure. We do not know how the story will unfold yet but, I am enjoying
this current chapter that seems a lot less chaotic than the previous one. There are waves of ‘normalcy’ (outside
of 15 hours in the hospital every week) that wouldn’t exist without the
enormous tapestry of people supporting us.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">There is no way I
could possible thank everyone properly for getting us through this first phase
but here it goes:<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Mom – for taking
such good care of us the 8 days that followed surgery. </span><span style="font-family: 'Century Gothic';">(I will cry if I say
anything more here)</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Jennfier Manion +
Carla Januska – for the creation and continued management of Jack’s FB page.
You have answered every inquiry with such love.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Erin + Jeff –
(Harry’s bro + wife) our local family who slept in that uncomfortable recliner overnight at the hospital
and continue to take our little man to dialysis when they can.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Sarah Cooper
& Margie Paller – for the creation of the meal registry. This has been such
an enormous help for us. Sweets and other goodies are beginning to stalk me.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Yoga community –
for your steady presence, cooking, and love. And to my sub teachers (Andrea
& Shannon) who kept us all moving. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Carondelet
community – for meals, driving, hugs, prayers, and more hugs. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Heather Corndorf–
your fierce strength and insanely soft heart. Thank you for dedicating a week
of classes at the SLP Lifetime Fitness to Jack. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">To Brian
Ehlers + the MAC group – – for
spreading Jack’s story as if it was your own.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">To the other
grandparents (Jim, Joe, Jackie, Bob) Aunts & Uncles– I know that you will
leap so fast when we tell you we need you. We feel your closeness. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">To my OM
Collective girls - for your behind the scenes, gentle support. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Jeni Shomeate +
fam – for babysitting Lucy every Tues during dialysis and those damn brownies.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Heather (our
nanny) – who has spent more time taking care of Harry and I lately than our
children </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Amanda and Kellie
– (speechless) enough said. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">To all my other
girls (yes, you) for the steady texts, phone calls, and reminders that you are
right by side. I love you more. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">And last but not
least…. to all of the courageous, brave friends of Jack here and on Facebook
who have been touched by his story and were willing to make a phone call to
save a life or share his story. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">With a love like
this, how could I not have faith. <o:p></o:p></span></div>
<!--EndFragment-->A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com0tag:blogger.com,1999:blog-7943363282669429191.post-60319440744880621792012-12-20T13:50:00.000-08:002012-12-20T13:51:44.175-08:00 Choose wisely<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Recently, I
chaperoned the 1<sup>st</sup> graders during their trip to see “ The Grinch Who Stole Christmas” at the Children’s Theatre. It was a fabulous show. The children were wide-eyed and white knuckled
as we settled into the balcony level seats. During the 75 minute spectacle, I coaxed many little ones back
to their seats, led a few to the restroom for potty breaks and sips of water, and
one young lady to the teacher who had a hungry tummy. Jack held my hand the entire time. It was perfect and
heart-warming in many ways.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">After the show,
the kids were invited to stay for a few minutes and ask questions. They were curious
about the stage, the age of the performers, and what happens behind the scenes.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">The stage manager
said… “Actually, its’ really hectic back here. People are everywhere, things
are constantly in motion. There is a humongous crew back here keeping this show
on track.”<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">I can relate to
that. So many friends tell me how our family handles all of this with such
grace. However, behind the
curtain, in the framework of our home, the interior of my mind – it is hectic,
frazzled, constant motion. The phone is ringing, meds are being delivered to
the front door, appointments are being scheduled, weekly lab draws, emails,
chocolate cakes and offerings of support and love. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">In effort to seek
a moment of normalcy, I went to Target last week with Lucy. Upon leaving, I
couldn’t remember where I parked. Furthermore, I had lost my beloved latte
inside the store. Losing my mid afternoon small skim latte is like losing my purse.
I am not proud but I confess. And yet it’s appropriate and human. I recognize the part of me in that
moment that is totally distracted, consumed with it all. In that recognition, I
am reminded again to CHOOSE. To
choose which part of myself to bring forward. Here’s a glimpse into the conversation that I had with
myself once I found my car: <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in;">
<span style="font-family: "Century Gothic";">Me:
“ok, that was funny. Now, distracted, little self—you can go away now. You are
not serving anyone here.”<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: .5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in;">
<span style="font-family: "Century Gothic";">(the
scenery broadens a little bit, my vision too)<br />
<!--[if !supportLineBreakNewLine]--><br />
<!--[endif]--><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: .5in;">
<span style="font-family: "Century Gothic";">Lucy: “mom, what are we doing?”<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: .5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in;">
<span style="font-family: "Century Gothic";">Me: …“yep, got it. Time to keep moving forward. Go home
now Ali. Choose which Self is going to lead here. Chose your highest, most expanded self”.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: .5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in;">
<span style="font-family: "Century Gothic";">And
off we go. Home.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">As chaotic as
times are for me, maybe for you, for the world <b>– we always get to choose… <o:p></o:p></b></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">which Self to
bring forward when the curtain rises? <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">which Self to
bring forward when the kids wake up? <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">which Self to
bring forward when my students show up at class?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">which Self to
bring forward when the storm comes? <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">And then, HOW DO
YOU HOLD THAT STANCE?<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">This is what I’m
working on right now. All I know is that YOU (the emails, text, cards,
offerings of support, prayers, your presence – you are my behind-the-scenes
crew that is keeping me on track. There are truly are no words to articulate my
appreciation.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">A little update
on Jack:<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";">Jack’s feeding
tube and dialysis catheters will be surgically placed on Wed, January 2<sup>nd</sup>.
Dialysis will follow soon after
and continue until we find a kidney.
If you haven’t already, please “LIKE” J<a href="https://www.facebook.com/JackCertainKidney">ack’s facebook page</a> “find a
kidney for jack Certain”.
Unfortunately, Jack’s docs do believe he will need to have his current
kidney removed but we have to “tune him up” with feeding and dialysis first. This next surgery will most likely happen about 4+ weeks after beginning dialysis. Once we have an approved donor, Jack’s
transplant will most likely take place 6 weeks after his kidney is
removed. So, we are looking at
March or April… possibly longer for transplant.
There are too many unknowns to have a tidy plan at this point. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Century Gothic";"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: Century Gothic;">With great love,</span></div>
<div class="MsoNormal">
<span style="font-family: Century Gothic;">Ali</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com5tag:blogger.com,1999:blog-7943363282669429191.post-45524127227900195792012-12-12T14:26:00.000-08:002012-12-12T16:25:10.484-08:00<span style="font-family: Georgia, Times New Roman, serif;">And so it begins AGAIN. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The last time I posted here was Dec 4, 2008 - 8 months after Jack received his first kidney transplant. I was hoping it would be at least another 20 years before I was back here writing, connecting, and reminding myself on how to navigate this journey our family is on.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Yoga Sutra 1.1 <span style="background-color: white; color: #222222; line-height: 16px;"> </span><span style="background-color: white; line-height: 16px; text-align: -webkit-left;">Atha yoga anushasanam.</span><span style="font-size: 7pt; text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">“Now, let us begin the study of yoga”. </span><span style="font-size: 7pt; text-indent: -0.25in;"> </span><span style="text-indent: -0.25in;">The first word, of the first verse of Patanjalis Yoga Sutras is "atha" which means NOW. </span><span style="text-indent: -0.25in;">We are called together for this practice. US,
we, plural, community. This moment. Atha: it is a call to action. In implies urgency, a sense of immediacy. </span></span><br />
<div style="text-indent: -24px;">
<br /></div>
<span style="text-indent: -0.25in;"><span style="font-family: Georgia, Times New Roman, serif;">This sutra guides me daily. It helps me rise when I would rather not. It helps me get to my mat when I would rather not. It helps me stay strong for my family. It reminds me </span></span><span style="text-indent: -0.25in;"><span style="font-family: Georgia, Times New Roman, serif;">of how deeply supported our family has been and how we now must open our arms and hearts again to receive help. Jack's situation is urgent. His kidney is failing and we learned a few weeks ago that dad (Harry) is no longer a good match due to the high level of antibody in Jack's body. </span></span><br />
<span style="text-indent: -0.25in;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span>
<span style="text-indent: -0.25in;"><span style="font-family: Georgia, Times New Roman, serif;">Jack will have a feeding tube placed and begin dialysis in the next week or two. Dialysis will most likely entail 3 -4 visits a week to the hospital for 4 hours. (Or 12 hours a day, 7 days a week in home). Dialysis will continue until we find a kidney. It is also possible that Jack will have his (my) current kidney removed while we find a new one as it causing more harm than good right now. I am told this type of procedure is even more difficult than a transplant because this kidney is so deeply embedded in his body. While I am flattered, it is painful and beyond words scary. I have been told it could by years before we find our kidney because of the level of antibody he has, but it could be tomorrow too. </span></span><br />
<br />
<span style="text-indent: -0.25in;"><span style="font-family: Georgia, Times New Roman, serif;">We have 3 eligible uncles that are being evaluated for possible donation. I am grateful beyond words. However, there is a slim chance of them being a good match for the same reasons why dad + Jack don't match. While I choose to be hopeful instead of fearful, we have been advised to look outside the family. Jack has also been listed nationally but is on "hold" as he is not healthy enough to have surgery right now. The feeding tube and diaylsis will hopefully position him for surgery. Whenever we get that call -- we must act fast. (There it is again.. Atha). </span></span><br />
<span style="text-indent: -0.25in;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span>
<span style="text-indent: -0.25in;"><span style="font-family: Georgia, Times New Roman, serif;">So, I write here to process my own matters of the heart. I write here to ask for your prayers and to hold us in your heart. I write here to hold myself accountable for all that I teach and live by. I write here to remind myself that we are not alone. </span></span><br />
<span style="text-indent: -0.25in;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span>
<span style="text-indent: -0.25in;"><span style="font-family: Georgia, Times New Roman, serif;">Many have asked about the donation process and how to help. I have quickly dodged that conversation in the past several months as it is uncomfortable for me. I mean really, what do I say ... "thank you". Thank you doesn't quite capture someone offering to donate a kidney to my son. But, as the sutra reminds me, we are meant to be in community, together, plural. And the time is now. I will share that process here for those that are truly interested:</span></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">- call the University of MN transplant office at 612.625.5115 and push option #1 for new referrals. You will be screened over the phone for obvious things (HIV, diabetes, etc.) You will be sent out information on how to send blood in for testing. If you are local you can also ask to come in to speed up the process. Even after having blood testing, it can take up to 2 weeks to determine if there is a match. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"> - Jack needs a blood type "O" donor. (Even if you don't know your blood type, you can call the number to get started. You must be 18 to call :).</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">ok. end of discussion on that topic.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Thoughts are stirring already about how to incorporate dialysis into our life, school, and work. I have visions of Jack being able to take his grandparents, aunts, uncles, friends on that adventure instead of mom and dad carrying that burden every other day. </span><span style="font-family: Georgia, 'Times New Roman', serif;">I think it will keep Jack in his best stance and empower him to share his journey. For now, I'll just focus on dinner and picking up the boys from school. </span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">With great love,</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Ali</span><br />
<span style="text-indent: -0.25in;"><span style="font-family: Georgia, Times New Roman, serif;">12.12.12</span></span><br />
<span style="text-indent: -0.25in;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span>
<span style="text-indent: -0.25in;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span>
<span style="text-indent: -0.25in;"><span style="font-family: Georgia, Times New Roman, serif;"><br /></span></span>A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com11tag:blogger.com,1999:blog-7943363282669429191.post-76410325118057418682008-12-04T12:22:00.001-08:002008-12-04T13:02:56.357-08:00Aligning with what the world offers to us<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwm5_yFG_yhO2iYfQ_-YoQmGF_IDiXI_5UcTBKtTUIecPzBFfeK-B-Rg466KrsUD3U1y3RHmNdvehI_641K-4Eb_3iHYnYyFTRa0sSXoFXFLmiDz7Ue5_CMpTxJ9Nmud2ZE0bpa13-rpc/s1600-h/IMG_0219.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwm5_yFG_yhO2iYfQ_-YoQmGF_IDiXI_5UcTBKtTUIecPzBFfeK-B-Rg466KrsUD3U1y3RHmNdvehI_641K-4Eb_3iHYnYyFTRa0sSXoFXFLmiDz7Ue5_CMpTxJ9Nmud2ZE0bpa13-rpc/s320/IMG_0219.JPG" alt="" id="BLOGGER_PHOTO_ID_5276040481144198194" border="0" /></a><br /><div style="text-align: center;"> <span style="font-size:85%;">Victory - we are potty trained! </span><br /></div><div><br /></div><div>Here's a <a href="http://flyfishingmidwest.com/">link</a> to my bro-in law's own blog... which is geared for the midwest fly-fisherman, BUT his most recent post on 12/3 contains the most heart-warming story about Jack that also reminds me about the gift contained in each moment. I also understand now why jack answered with "FISH" when the teacher at preschool asked what he was grateful for last month.<br /><br /></div><div>Jack is doing really well. He's busy casting webs like spiderman and opening the chocolate in his advent calendar. He and Sam had a fist fight over who saw Santa out which window in the car this morning. So, all in all I have to say things are 'normal' around here. We have our next visit to the kidney doc at the end of the month. </div><div><br /></div><div>Sadly, we had to say goodbye to our home care nurse this morning. Our insurance changed with Harry's new job and as a result this service is no longer provided. We had VERY tearful goodbye this morning and hope to have a new plan in place soon. We still need to have biweekly labs and an assessment for Jack. So, I trust in the grand plan but hope that we can rebuild a new relationship in a clinic where Jack feels safe. (I'm not jazzed about hauling both boys out in the snow and sitting in a clinic with a child that is immuno-suppressed all before 8am). His blood draws are complicated as his veins are so small. This morning it took 3 venal punctures, strong arms, lots of yogic breathing, and finally a finger poke to get the job done. Thank GOD for spiderman band-aids and for our amazing nurse Lynn.<br /><br />And yet, .... we remain humbled and grateful for today, for fish, for uncle jeff's unwaivering support around here.<br /><br />Some pics...<br /><br /><br /></div><div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaBRhKbvmCg36YQkGNedjg5_8_X4iYXoS2H8JwL9vKSa9vgdmGYlUGM_Nceyo9V6xx9xCdGklLNle5dbSOwD226b9aCHQHnNcGC3AE36GJsxIfAr1feEgNnjjgvpj-h35__id1ObL6u-o/s1600-h/IMG_0254.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaBRhKbvmCg36YQkGNedjg5_8_X4iYXoS2H8JwL9vKSa9vgdmGYlUGM_Nceyo9V6xx9xCdGklLNle5dbSOwD226b9aCHQHnNcGC3AE36GJsxIfAr1feEgNnjjgvpj-h35__id1ObL6u-o/s320/IMG_0254.JPG" alt="" id="BLOGGER_PHOTO_ID_5276040504666101138" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj4qe11yssLmKA61o718V2RVv9z8Vjadh3hEKGqlR0Cwt4tqhjzuGvWtGac_kgi4BtfpTAlP2CRO9QJK9udpp7es7URvyvpeXDt_1fuMt2j0AkBoPxGpc_qeaK7GGFkzpLV1DDl8aOv9A/s1600-h/IMG_0262.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj4qe11yssLmKA61o718V2RVv9z8Vjadh3hEKGqlR0Cwt4tqhjzuGvWtGac_kgi4BtfpTAlP2CRO9QJK9udpp7es7URvyvpeXDt_1fuMt2j0AkBoPxGpc_qeaK7GGFkzpLV1DDl8aOv9A/s320/IMG_0262.JPG" alt="" id="BLOGGER_PHOTO_ID_5276040514601099954" border="0" /><br /></a><div style="text-align: center;"><span style="font-size:85%;">on a hunt for a xmas tree in st. croix valley with uncle chad and pop<br /></span></div></div><div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2SqCina9Tqegq9UwQxIDTTmcwV01ei9zyT8RCP4SwbQ22J85sS3y5yYjEN8CuHgv5XOzP4uExR5HtPS0pcvVIRnpcX4B3QbrhWS5pd9tuXHEUJ-MNRAD8wppSSmuzQtJYgmw4JXvFUf4/s1600-h/IMG_0200.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2SqCina9Tqegq9UwQxIDTTmcwV01ei9zyT8RCP4SwbQ22J85sS3y5yYjEN8CuHgv5XOzP4uExR5HtPS0pcvVIRnpcX4B3QbrhWS5pd9tuXHEUJ-MNRAD8wppSSmuzQtJYgmw4JXvFUf4/s320/IMG_0200.JPG" alt="" id="BLOGGER_PHOTO_ID_5276040494608271522" border="0" /></a><span style="font-size:85%;"><br /></span><div style="text-align: center;"><span style="font-size:85%;">superciliousness</span><br /></div></div>A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com1tag:blogger.com,1999:blog-7943363282669429191.post-43361472443993570942008-10-06T21:31:00.000-07:002008-10-07T09:23:55.629-07:00Cherry Margaritas<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG3TS0sw2ZSCIGoUzU_H5_jnj42cXclQ5UYAIWX01OuMmvYimyBtwW7gCilaabMBKPGXvFEGb_RT96gU-Yn9ueBxMYloBog3_dMeooioCUO_-YJ443K5orChEk33YD1dARsuoT6EkzdAU/s1600-h/IMG_0071.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG3TS0sw2ZSCIGoUzU_H5_jnj42cXclQ5UYAIWX01OuMmvYimyBtwW7gCilaabMBKPGXvFEGb_RT96gU-Yn9ueBxMYloBog3_dMeooioCUO_-YJ443K5orChEk33YD1dARsuoT6EkzdAU/s320/IMG_0071.JPG" alt="" id="BLOGGER_PHOTO_ID_5254448431571477474" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhultAbK8ZWAQ59KtukwuQKiQbPzdqO8PbeQfEAV47eBCX0FcbsTqqCeIrHtZ5OQ0OWfDm_64IaBslc7dphQCoNJxYqtcqSYdx63lecbsPnbVMe2qsEGauw_jPRn6shQdjH5Ok6ofOCZIs/s1600-h/IMG_0066.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhultAbK8ZWAQ59KtukwuQKiQbPzdqO8PbeQfEAV47eBCX0FcbsTqqCeIrHtZ5OQ0OWfDm_64IaBslc7dphQCoNJxYqtcqSYdx63lecbsPnbVMe2qsEGauw_jPRn6shQdjH5Ok6ofOCZIs/s320/IMG_0066.JPG" alt="" id="BLOGGER_PHOTO_ID_5254265189793296354" border="0" /></a> Two weary parents in celebration of 7 years of marital bliss escape to Door County, WI and sip cherry margaritas in 40 degree temps watching the sun set on the horizon. Woo HOO! <div><br /></div><div>Meanwhile, back at the ranch... Sue Sue and Pop take over the Certain household and pharmacy. Chocolate milkshakes and googly eyes noted below.<br /><br /></div><div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8sMgtPrOuQIO0D_02CJBNpFoZW-ZAZnIVgdKN3VjCz6VKQmkDUObCKlQWANvM21dPHDnEoZKLfRkiLOlDQfg6XESMGZsiBoV50IY9J7Wl7D9oVQJ-ikjD5l98KBOZPVnmIbuLE9WovDU/s1600-h/IMG_2433.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8sMgtPrOuQIO0D_02CJBNpFoZW-ZAZnIVgdKN3VjCz6VKQmkDUObCKlQWANvM21dPHDnEoZKLfRkiLOlDQfg6XESMGZsiBoV50IY9J7Wl7D9oVQJ-ikjD5l98KBOZPVnmIbuLE9WovDU/s320/IMG_2433.JPG" alt="" id="BLOGGER_PHOTO_ID_5254268463466925826" border="0" /></a></div><div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhultAbK8ZWAQ59KtukwuQKiQbPzdqO8PbeQfEAV47eBCX0FcbsTqqCeIrHtZ5OQ0OWfDm_64IaBslc7dphQCoNJxYqtcqSYdx63lecbsPnbVMe2qsEGauw_jPRn6shQdjH5Ok6ofOCZIs/s1600-h/IMG_0066.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixZudZ8Wi2qJ_EFgVD-eqwIY6zsjL_3i-SbXgX2qnkyKUGqBGo-j7QTIYiNzfS3S0lz8UrV8r1f8n19JpQrXgCpI_xB5jzEhlxf8maCp27zYtqhVlsF6vh86U84TD5BQ8LZlMPWOWMPKI/s320/IMG_2432.JPG" alt="" id="BLOGGER_PHOTO_ID_5254266553262383266" border="0" /></a><br />A visit to the Orchard for donuts + blue sky.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjapW-z7KBgddMrhYlGbvNP1iZ5EYHtir6t4QVuDbh6V5-VHLF6k5aeCjMAfHMpe4PFa4FSNLHnRr6059f0abDQ_KOg6wJTkMEYrobCx3R79j7dzlm4StYWP7xgmwoIuzPwckMTD67U3aU/s1600-h/IMG_2461.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjapW-z7KBgddMrhYlGbvNP1iZ5EYHtir6t4QVuDbh6V5-VHLF6k5aeCjMAfHMpe4PFa4FSNLHnRr6059f0abDQ_KOg6wJTkMEYrobCx3R79j7dzlm4StYWP7xgmwoIuzPwckMTD67U3aU/s320/IMG_2461.JPG" alt="" id="BLOGGER_PHOTO_ID_5254268900479377666" border="0" /></a><br />And here's some pics from the archives of September. It was a really full month. The boys turned 3! (holy batman) We had visits from the Grandpa Bob and our dear friend Kellie who is an amazing <a href="http://www.nestphotography.com/Site/HOME.html">photographer.</a>The first few pics were taken by Kellie...<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWbbSDnhC2c_h0EgL9ROvtUDByFF_mx1_KOUaESyjQ5Nkjvk72SdENIsFx2JiAlbVWvNpP3HB3HLkRGHCdfD4DCA5KKn-OvGfRHQXHinjwNdOTKtGqyciwQoztzObqiO9_9bP2sz06D6U/s1600-h/IMG_9162.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWbbSDnhC2c_h0EgL9ROvtUDByFF_mx1_KOUaESyjQ5Nkjvk72SdENIsFx2JiAlbVWvNpP3HB3HLkRGHCdfD4DCA5KKn-OvGfRHQXHinjwNdOTKtGqyciwQoztzObqiO9_9bP2sz06D6U/s320/IMG_9162.JPG" alt="" id="BLOGGER_PHOTO_ID_5254279775272827986" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHNSELioxkrB09LLj1Y7CTFubSkWJFlhk5xV2AcBo-ZU0rslF0cUU9kWSTcaQCqGhyphenhyphenhhD0PgGeyj2_zJP3P3mmavFQGUrsYDjzeYqD31YvrRKHwux6X2uA66IexWxsdtbQ9xx4HVNL__g/s1600-h/IMG_9229.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHNSELioxkrB09LLj1Y7CTFubSkWJFlhk5xV2AcBo-ZU0rslF0cUU9kWSTcaQCqGhyphenhyphenhhD0PgGeyj2_zJP3P3mmavFQGUrsYDjzeYqD31YvrRKHwux6X2uA66IexWxsdtbQ9xx4HVNL__g/s320/IMG_9229.JPG" alt="" id="BLOGGER_PHOTO_ID_5254278482727607906" border="0" /></a><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS-TVXbaIzF2ZLhVyaIlevs2ot4oprArIuwCeS_Nxd5g7Lz_8y-R4Q7ak6LUI2sIBBt6nq2bG3Q34gxzkjpqvajH_i3kGujMQElPeaNwnTwcPJxePqNlwQxrMHqSM-ReaSnSNG0jv5uqE/s1600-h/IMG_9211.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS-TVXbaIzF2ZLhVyaIlevs2ot4oprArIuwCeS_Nxd5g7Lz_8y-R4Q7ak6LUI2sIBBt6nq2bG3Q34gxzkjpqvajH_i3kGujMQElPeaNwnTwcPJxePqNlwQxrMHqSM-ReaSnSNG0jv5uqE/s320/IMG_9211.JPG" alt="" id="BLOGGER_PHOTO_ID_5254278491911343362" border="0" /></a><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFiANsq9pCa26TQla_aaP0a32QQw7hNdUX1cjgq6HzpWW06qQKL7iQLmj-8HZ1fBZvapgReXvSJvmOCLrbA4JVW0PG2pYwDWgUVT1ntODq6nboM7NNdP6HRdjy7RdshzTyV_79ViFuM6g/s1600-h/IMG_0933.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFiANsq9pCa26TQla_aaP0a32QQw7hNdUX1cjgq6HzpWW06qQKL7iQLmj-8HZ1fBZvapgReXvSJvmOCLrbA4JVW0PG2pYwDWgUVT1ntODq6nboM7NNdP6HRdjy7RdshzTyV_79ViFuM6g/s320/IMG_0933.JPG" alt="" id="BLOGGER_PHOTO_ID_5254271144752182754" border="0" /></a><br />The boys working on handstands during the debate!<br /><img src="file:///Users/alicertain/Pictures/iPhoto%20Library/2008/09/14/Sam%20&%20Jacks%203rd%20BD%20wkend001_edited.JPG" alt="" /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbG4a9ZqBO9goFwtogpvpH_u8dx-8LQeNLTeA-JM2r9X_ce4KlHCSikOqjsUMgRL-e6YMvCz9MXANmG8Md-VVT48dgOU8C6HccPkzpVrDdhUBf_SBeyQ4zoCxFpTa6RN-r06vmRNP0EVI/s1600-h/Sam+%26+Jacks+3rd+BD+wkend001_edited.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbG4a9ZqBO9goFwtogpvpH_u8dx-8LQeNLTeA-JM2r9X_ce4KlHCSikOqjsUMgRL-e6YMvCz9MXANmG8Md-VVT48dgOU8C6HccPkzpVrDdhUBf_SBeyQ4zoCxFpTa6RN-r06vmRNP0EVI/s320/Sam+%26+Jacks+3rd+BD+wkend001_edited.JPG" alt="" id="BLOGGER_PHOTO_ID_5254277104010731266" border="0" /></a><br />A mother's love (batman cake) or insanity.<br /><br /></div><div><br /></div><div><br /></div><div>oh... and by the way, the cherry margaritas were over-the-top fantastic. Seriously. Thanks mom + jim, uncle jeff, our nanny christie, and grace for allowing us to slip away, sleep, and play. Thanks dad for running to the store at the last minute when I realized I didn't have black food coloring for that damn (whoops) birthday cake! And thanks to all to continue to be entertained by our adventures.<br /><br />OH.... and most of all.... Jack is great! If it is any indication that I nearly forgot to mention his health in this post, let it be known he is super fantastic. We continue to have home visits from our nurse and watch his labs each week.<br /><br />Much Love,<br />Ali<br /></div>A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com0tag:blogger.com,1999:blog-7943363282669429191.post-17890298696931034882008-09-10T19:54:00.000-07:002008-09-12T05:59:41.775-07:00First Day of School!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiUoY22Ncc06_hGVgXOpXAoa837ivCIt3j22OnSVNgdIksSKlC464ILDFRuNurX1l9gOqpcY4Ur2x8u9iJTai-3Kvd4qj_xk2WnFNsWNrDfD_8q0guY0nCbwhqJKp0wVimr-WWpZ4utPQ/s1600-h/IMG_0917.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiUoY22Ncc06_hGVgXOpXAoa837ivCIt3j22OnSVNgdIksSKlC464ILDFRuNurX1l9gOqpcY4Ur2x8u9iJTai-3Kvd4qj_xk2WnFNsWNrDfD_8q0guY0nCbwhqJKp0wVimr-WWpZ4utPQ/s320/IMG_0917.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5244596887262136610" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYcB0PEZT_s4cxEdEw9zUj-7x-nhXeNePMOcyW3whflBUZYTBnqOmtbprLv279AVQ_2GGc7GcHGyOptaE2mESwuJ9TR843WTwTzVpY8tl3y_d-FdXN8qyHOU1OI7ThfmNr1zRvg5kUps8/s1600-h/IMG_0913.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYcB0PEZT_s4cxEdEw9zUj-7x-nhXeNePMOcyW3whflBUZYTBnqOmtbprLv279AVQ_2GGc7GcHGyOptaE2mESwuJ9TR843WTwTzVpY8tl3y_d-FdXN8qyHOU1OI7ThfmNr1zRvg5kUps8/s320/IMG_0913.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5244596402470294978" /></a><br /><div>The boys above are happily modeling their backpacks in preparation for school! We only had a few heated arguments over who would get to have the blue one. </div><div><br /></div><div>The last month for Jack has been the best ever. I'm still in awe when I see his cheeks every morning without the tube and tape attached. The meds have been going well although a degree in child psych would serve me at sometimes. For Jack, the need to be in control and have choices in this process is important. </div><div><br /></div><div>Jack's labs indicated yesterday he might be preparing to fight his first cold or infection. (White blood cells and other lab results were extremely low). The nurse indicated his 'first line of defense' is very weak so we have to be very cautious and protective right now. My hope is that he can have the strength to fight through this and stay in preschool as he LOVES it already. We'll learn as time unfolds. </div><div><br /></div><div>The boys turn 3 on Sunday. Of course, we're having blue cake. That should be a good pic for the next blog update. </div><div><br /></div><div>Stay tuned.... </div><div><br /></div><div>Ali</div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><div><span class="Apple-style-span" style="color: rgb(0, 0, 238); "><div style="text-align: left; "><span class="Apple-style-span" style="color: rgb(0, 0, 0);"> </span></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div><div style="text-decoration: underline;text-align: center; "><br /></div></span></div></div>A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com1tag:blogger.com,1999:blog-7943363282669429191.post-76412388635714629712008-08-20T13:01:00.000-07:002008-08-20T13:11:37.300-07:00FREE!The feeding tube is out! Applesauce + meds + courage + trust + patience was all it took. <div><div> <br /><div><br /></div><div><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxlzmLaNfRDDVVlQbM4qiQF9K25FS7Cqcl8BOCd0Y3ErXCOUZkPIw8UtWs6Qr8FKvSvQwTyTjwkJRFFM1aT0i3gPiPwDJW7hpnXD8e8OeOuNV2THEa2s5-p8OCuJyir2sOaargqBqPYR8/s320/IMG_0881.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5236692965644554498" /><br /></div></div></div>A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com3tag:blogger.com,1999:blog-7943363282669429191.post-20010840019556771972008-07-17T20:56:00.000-07:002008-12-09T00:14:06.686-08:00Summer<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn-a7iFah412RBUZq5xFpffjXFOXNu6uJCsdgex-npeX-cwMqxJlz3sxE8syBv6OxYk5lo7pW0k79rf0eCgo8tt_bc_tML2CjPl1H8woMWBua4QLmyASn46mrL2jIPzhqJC58s3Udjcjk/s1600-h/IMG_0726.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn-a7iFah412RBUZq5xFpffjXFOXNu6uJCsdgex-npeX-cwMqxJlz3sxE8syBv6OxYk5lo7pW0k79rf0eCgo8tt_bc_tML2CjPl1H8woMWBua4QLmyASn46mrL2jIPzhqJC58s3Udjcjk/s320/IMG_0726.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5228949032794189314" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglgUSGy0xyaorSe_zogg961oUrzAOwf0Vr_XKeoWv7g-AES9cC8dfv23YmJXUMPNI4vJ2Ln9kg8fLPsbDS7lXmRZXzVpLer_Xi0QpiqHWiqh0mx0jMQqlQojUYZmcMUwI7OuioiCGl7O8/s1600-h/IMG_0667.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglgUSGy0xyaorSe_zogg961oUrzAOwf0Vr_XKeoWv7g-AES9cC8dfv23YmJXUMPNI4vJ2Ln9kg8fLPsbDS7lXmRZXzVpLer_Xi0QpiqHWiqh0mx0jMQqlQojUYZmcMUwI7OuioiCGl7O8/s320/IMG_0667.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5224205011266695282" /></a><div>A full month has passed since my last post. (Those of you with blog addiction are surely aware of that.) So, Jack continues to make great strides. The last month has been very steady and it is truly amazing to see my kidney in action in his body. His muscle tone is significantly greater, he can jump, talk back (thanks again to steroids), and could potentially win a hot dog eating contest for toddlers.</div><div><br /></div><div>His only medical intervention in the last 30 days has been from our home nurse who has come 3 x's a week to draw blood and change the dressing on his central line. (The central line is high maintenance and often the culprit for an infection but the advantage is that Jack doesn't feel a thing when the nurse draws blood). Since his labs have been so consistent and very favorable we are removing the central line this Friday which is a big milestone! Of course, the downside is that he will have a venal puncture 1 x per week which will dramatically change his relationship with his home care nurse. It's a quick poke to draw blood and Jack is a tough patient because he his veins are very small. Overall, very good news that lab frequency is spreading out and the the central line is coming out. The first thing we will do to celebrate is take a bath and go to the swimming pool (both of which are restricted with a line).</div><div><br /></div><div>We are currently planning an exit strategy for the feeding tube that Jack has managed to keep in since December '07. He is interested in foods but not so interested in liquids. The kidney requires a certain amount of hydration (+25 oz / day) so the feeding tube acts as an insurance</div><div> policy to keep him hydrated as well as administer his meds. We are working with a nutritionist for support and hope to be down with this by September assuming he will take his meds orally. It is not uncommon for us to wake up 3-4 x's an evening to deal with a feeding tube related issue (i.e. kink in the line, tube has come out, leaked, or the pump is finished and the alarm needs to be turned off). This is by far our biggest stress and frustration right now. I remind myself how far we've come thus far and that I'm not the one with the tube in my nose and throat. </div><div><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5yzONAtyPnp_7DVBao1N5l6J3fuixrEGkwnu6nS87OVma928QEM7jdkwzGZcQIRi6fPigNPgqr3PpliZ_4T1xJdr18hgT02GkMV80MHIs8UEaxXvb45jnrBFPubQPRoj_HZQYilN0flE/s320/IMG_0705.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5228949018623567682" /></div><div><br /></div><div><br /></div><div><br /></div><div><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPApXIwTVssorW6GQYWSkFJ5XljvsdoBVYJ0hesoqF3mRESN2bdlfSrzYqWZ6ogFMmGqwovG1vNZF7Wer72pipDlZlsefnfdEqfs-MWHEEvAknIenAQeTzMOUfXpsvk08ZxFwkFPI1lIc/s320/IMG_0746.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5228947724353119506" /></div><div><br /></div><div><br /></div><div><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib2kBEMdtjZBf4RN_DwrWAawSSP9u67VBDZgtA6C1HllZ10ujj0zCPmtc4UV09mJn66W3R3-FjgoIo5w3jWjAnkbZQtiJXnEiDemR7vZ-bpzo9PJHK909oUHxKdtT3BtUdGmghwHzgcZE/s320/IMG_0738.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5224198566023885538" /></div><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJJmgVecINDBkVChMEepJlPalm8TRNHV1_B-mcWZ1ItEhaNQjjlTrE_W9M7Gj99uMSxvkbTd66Ck7JfQ-0pvwIsg3Q07qPNhQXPgi9Bkj9Ot4t2aiqdGecttBB_6THe4WjhkF3VtpBOhk/s320/IMG_0704.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5228947689263097746" />Sam + Harry+ Jack+ Gpa Joe<div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div>(yes, those are my salad spinners)</div>A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com0tag:blogger.com,1999:blog-7943363282669429191.post-54517352134119880202008-06-30T13:06:00.000-07:002008-12-09T00:14:06.851-08:00The Tide Turns<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjybdFEvBDAwB1SBYOuYj5z4XtJM28iy7N59AZWUtmEySjEQzQ0jyTToT4w1RcfWmTem7v9rY_4LSSGLoVhd7JaGjlQbI_D6u7b_BovQZyaLwrjeb1MF7lt2_Xmg_5B4fGbWmxMbKViinw/s1600-h/IMG_0653.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjybdFEvBDAwB1SBYOuYj5z4XtJM28iy7N59AZWUtmEySjEQzQ0jyTToT4w1RcfWmTem7v9rY_4LSSGLoVhd7JaGjlQbI_D6u7b_BovQZyaLwrjeb1MF7lt2_Xmg_5B4fGbWmxMbKViinw/s320/IMG_0653.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5217781099932233842" /></a><div>Sam makes the headline this week: on the 'injured' list with high fevers, covered with cold washcloths and a rash. "Everything hurts and I need a special treat" - Sammy 11pm.</div><div><br /></div><div><br /></div><div><br /></div><div><br /></div>Meanwhile, Jack had a <span class="Apple-style-span" style="font-weight: bold;">fabulous</span> week! Harry pointed out to me that I wasn't really acknowledging this fact when people would ask. Cautiously optimistic, I would say "he's pretty good" when in reality he's never been better. I suppose I was just too afraid to admit it, in fear that it wouldn't last. Then again,... the only constant is change. <div><br /></div><div>The kidney biopsy did not happen last week as his labs steadily improved (although still a work in progress) and his blood pressure has stabilized. The fevers have been banished! In his radically apparent new experience of freedom, confidence, and health he is an official wild man - running his mouth 24/7 , growing hair in odd places (thanks to steroids), and recklessly practicing his baseball swing. OH... and eating like a truck driver. (I thought the day would never come!)</div><div> </div><div><div><div><div><br /></div></div></div></div>A CERTAIN KIDNEYhttp://www.blogger.com/profile/00510742415576788502noreply@blogger.com4