tag:blogger.com,1999:blog-21315492305834247902024-02-19T18:53:58.552-08:00Shoshana: LeukemiaThe chronicles of our family's journey with our daughter's Acute Lymphoblastic Leukemia (ALL)burndivehttp://www.blogger.com/profile/05133129688998029494noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-2131549230583424790.post-45569370648548979692014-12-18T21:59:00.000-08:002014-12-18T22:32:20.674-08:00Done with Chemo!<h3>
She's Done!</h3>
Yesterday I gave Shoshana her last dose of chemo! I don't think it's hit me yet. Maybe it will hit me the first time we take an overnight trip and I realize that we don't need to pack any meds. Maybe it will be the next time she's in an especially cranky funk, and I'll have to remember that it can't be the steroids, because she won't be on them.<br />
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It's been such a regular part of our morning and evening routine for so long that I hardly think it's strange anymore to be donning protective gloves to hand my daughter poisonous pills out of a bottle, which she then proceeds to put into her body.<br />
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Nope, it really hasn't hit me yet.<br />
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It took a long time to wean Shoshana off of Gabapentin, which she had been taking for nerve pain. The wean was slow, but a few weeks ago, we finally were able to ditch it altogether.<br />
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<h3>
School</h3>
Shoshana started kindergarten in the fall. We were initially hesitant about her stamina, since being on chemo means that she needs naps on most days. She seems to be doing fine, although she's only going three days a week (but that's another story, which doesn't belong on this blog.)<br />
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Anyway, Shoshana absolutely loves school. Elizabeth and I might possibly want to homeschool at some point, and if we did, we would definitely need to be connected to a co-op so that Shoshana could connect with friends. She has always been super social. I remember when she was a baby, if it had been too long since she had been out among other people Elizabeth would ask me to take her to the grocery store or something so that she would get some social interaction. She always came back in a better mood.<br />
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<h3>
The Past</h3>
The past seven months have been kind of a blur for me. Losing Judah at the end of an especially difficult pregnancy was only the beginning of the whirlwind of family drama and disruption. We were hoping to sell our home at the end of November, and the buyer had to back out, and we learned that my job will be moving out of the state (without me) in the next year or so.<br />
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In all this, the Lord has been faithful, and there have been many little blessings along the way.<br />
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Shoshana had a bone marrow biopsy this November. They did not find any leukemia in her bone marrow.<br />
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<h3>
The Future</h3>
As I mentioned in a <a href="http://shoshana.burndive.com/2014/08/camp-agape-nw-2014.html">previous post</a>, Shoshana is done taking chemo, but she is not out of danger of relapse. The training wheels are off. This next period of time she will be regularly monitored for any sign of the cancer coming back. If there is still a cancerous white blood cell anywhere in her body, it could go right back to multiplying out of control, and we would essentially be back at square one.<br />
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Our hope and prayer is that this doesn't happen, but we will have to proceed into the future, and take each day as it comes, trusting that enough grace will also be given to overcome whatever trials are in store.<br />
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Shoshana's hair is now long enough that she can have ponytails! And despite the stress of chemo on her body she has been growing like a weed in the night the whole time. Abigail is three, and the girls have been interacting so well together (overall). I'm so happy that they have each other as sisters, and I'm so happy that we get to be their Daddy and Mommy. <br />
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<h3>
Prayer Points</h3>
<ul>
<li>Please give thanks that Shoshana has made it this far, and that she is doing so well.</li>
<li>Pray that her treatment will have been successful, and she will not relapse.</li>
<li>Ask for encouragement and grace for our family as we move forward together.</li>
<li>Please also pray that we will be able to sell our house soon.</li>
</ul>
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<br />burndivehttp://www.blogger.com/profile/05133129688998029494noreply@blogger.com2tag:blogger.com,1999:blog-2131549230583424790.post-3857680375382426422014-09-30T22:41:00.002-07:002014-10-15T17:49:16.871-07:00AwarenessSeptember is <a href="http://bit.ly/1qh77gP">National Childhood Cancer Awareness Month</a>. Now you're aware.<br />
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The more people that are aware of a problem, the more potential for fund raising, and the more funds there are available for research, the better the chances that successful treatments are developed.<br />
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Of course, every month, I am hyper-aware of childhood cancer. Here's one choice I have made year-round that I believe will make a small but real difference in the big-picture scope of childhood cancer.<br />
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I choose to have a portion of the money I spend at <a href="http://smile.amazon.com/">Amazon.com</a> donated to the <a href="http://bentownefoundation.org/whatwedo/">Ben Towne Foundation</a>. <br />
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I changed the bookmarks in my browser that link to www.amazon.com to link instead to smile.amazon.com. It's a simple change, but this change means that a small percentage of the money I spend on things I would buy anyway go towards pediatric cancer research. (We have an <a href="http://bit.ly/bd-azpvideo">Amazon Prime</a> account, so we use it to buy every-day things all of the time with free 2-day shipping.)<br />
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You can point Amazon Smile at any one of thousands of charitable organizations. I chose Ben Towne Foundation because I believe in their vision.<br />
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What they do is to extract T-cells from a patient, and reprogram them to recognize cancer cells and kill them [Update: I have <a href="http://bit.ly/1zbW1UZ">since learned</a> that they target all B cells, not just cancerous ones]. (They do this using neutered HIV virus, since it can infect T-cells.) The patient's own modified T-cells are multiplied in the lab, and then re-introduced into the body. Once back in the body, they do what T-cells do, except that now they have the special ability to seek out and destroy cancer.<br />
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This sounds so futuristic, and yet they are doing it in clinical trials with real patients right now. And they are succeeding! These patients are the kind with multiple relapses; the otherwise hopeless cases: now suddenly cured (hopefully in perpetuity, since the reprogrammed cells will stay with them). The future is now, or at least, it is nearer than we thought.<br />
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Would you like to do the same? It's easy. Just go to <a href="https://smile.amazon.com/">smile.amazon.com</a>. Once you sign in to your account, you can search for and pick your charity. Remember to change your bookmarks (or type it in manually). <br />
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That's it. You're done. The future will arrive ever-so-slightly sooner.<br />
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I'll take a cure for cancer over flying cars any day.<br />
<br />burndivehttp://www.blogger.com/profile/05133129688998029494noreply@blogger.com0tag:blogger.com,1999:blog-2131549230583424790.post-91115866827116957622014-08-07T23:22:00.000-07:002014-08-07T23:22:56.728-07:00Camp Agape NW 2014No news is good news, and Shoshana has been doing great!<br />
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She's almost weaned off of Gabapentin (for her neuropathic pain), and she will be finished (!!!) with chemo on December 17th of this year.<br />
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<h3>
Camp Agape </h3>
A few weeks ago, the whole family (including Elizabeth's parents) got to go to Camp Agape Northwest. Camp Agape is hosted by the <a href="http://www.philoptochos.org/">Philoptochos Society</a>, and is designed to support families with kids battling cancer, and give them a break. Both of our girls had a blast. They are paired with one-on-one counselors who engage with them, and play with them all day, all week, doing whatever the kid wants to do, among the camp's various activities and crafts, or in some cases, supporting the imaginative whims of the child. <br />
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The parents are given somewhat of a break from the kids, and from the daily grind. I (Tim) found it a bit hard to simply let our girls go off and play without me. The girls and I love to be with one another, and so we were able to spend some time together. I brought some board games and card games, and of course I introduced some of the counselors to Dominion after the kids were in bed.<br />
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The camp was a great time to get to know some of the other local families with kids battling cancer. There were a lot of kids with leukemia, but also some with other cancers. Most of the kids were in maintenance or monitoring, since you can't really go to a camp like this if you're in the middle of intense treatment, so we also had that in common. Some of them we had seen or met while at Seattle Children's Hospital at one time or another, but of course when we were there we had a lot to worry about, and not too much time to slow down and connect.<br />
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There was a little bit of sharing. The moms got to go out together one day, and the dads another. I felt like it would have been better if the parents had been able to spend more time together in a structured way earlier in the week, since the guys dinner was on Thursday, and after that there was only one more full day of camp, but it was good nonetheless. We'll need to put together a barbecue or something, in our copious amount of free time this summer (Ha!).<br />
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I think that the camp was well named. Agape is unconditional love, and that was the love that we felt from the organizers, staff, and counselors. No matter what situation we were in, we were showered with love, and nothing was expected of us, other than to receive it in blessing. <br />
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<h3>
Going Forward</h3>
Stopping chemo in December will be wonderful and at the same time the thought of it makes my stomach turn into knots. Chemo is dreadful, but it is also what is killing the cancer if/when it pops up from one of its indeterminate number of hiding spots in Shoshana's body. Chemo is the training wheels. Are there still leukemia cells lurking about, waiting to multiply in a few months? In a few years? We don't know. We can't know. We can only wait, and watch, and hope, and quietly put the matter in God's capable and loving hands. <br />
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The worst part is, that if she does relapse, the standard response would be to attempt a bone marrow transplant. The preparation for a bone marrow transplant is a month of chemo to completely wipe out the immune system. The best tool available to accomplish this is (you guessed it) vincristine, the very drug that almost killed Shoshana, and devastated her nervous system. We do not think that she would survive.<br />
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<h3>
Hope </h3>
Trust can be a difficult thing. We have no promise that Shoshana will be with us in five years. Of course, none of us have a promise that we will ever draw another breath. That's the way the world works, and that's how our lives have worked lately. We thought that we would have a healthy baby boy in our arms in a matter of days, and then suddenly, <a href="http://bit.ly/Judah-Daniel">he was gone</a>.<br />
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The rule of this world belongs to one who is out to kill, steal, and destroy, and in it we have known death, loss, and brokenness. We choose to put our hope in a God who in the ages to come will show us the riches of his grace in his kindness toward us in Christ Jesus, who has defeated sin and death. Someday, when He makes all things new, we will have our baby Judah. I hope and pray that regardless of how long she is with us in this life, Shoshana will come to share in the everlasting <a href="http://bit.ly/lewis-offer">life of Christ</a>. <br />
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<h3>
Pray With Us</h3>
<ol>
<li>Thank the Lord for his church, who has shown us love throughout our difficult times, including the Philoptochos Society at Camp Agape.</li>
<li>Praise the Lord that Shoshana has been doing so well this summer, and ask specifically for her continued health, healing, and protection from leukemia relapse. </li>
<li>Lift up our whole family in grieving for our baby boy <a href="http://bit.ly/Judah-Daniel">Judah Daniel</a> who died during early labor in May.</li>
</ol>
<h3>
Pictures</h3>
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<br />burndivehttp://www.blogger.com/profile/05133129688998029494noreply@blogger.com1tag:blogger.com,1999:blog-2131549230583424790.post-16800714014315078042014-04-27T00:10:00.000-07:002014-04-28T15:56:15.817-07:00Spring UpdateIt seems like it has been forever since I (Tim) updated this blog last November. It feels like we're living in a different world.<br />
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<h4>
Tracheostomy</h4>
Shoshana's trach tube came out last September, but there was still a hole in her neck leading to her trachea. It was supposed to close up on its own, but I think she had gotten into the habit of pushing air (and whatnot) through the hole, so it seemed whenever she breathed hard, or coughed, or got upset, it would gurgle a little bit. <br />
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Since it wasn't closing all the way on its own, they finally stitched it shut. I think that was in March. Anyway, it's gone now. All that's left is a little scar at the bottom of her neck.<br />
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<h4>
Meds & Chemo </h4>
Shoshana's care is so insanely simple now! Her only pain medication is Gabapentin (twice a day, for neuropathic pain), and she is still on Maintenance chemo, which means she takes a pill or two each weeknight in order to keep her immune system suppressed within a certain range of lab-based values. She also has a 5-day course of steroids once every month. Two days a week she takes and antibiotic in order to prevent lung infections that kids in her situation are prone to.<br />
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Yes, that probably sounds like a lot to most of you, but from our perspective, this is a cake walk.<br />
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Shoshana is scheduled to be done with Maintenance in December. After that, she gets no more chemo! This is both amazingly awesome, and nerve-wrackingly scary for me. There either is or is not cancer hiding away in Shoshana's body somewhere, waiting to come back, or there isn't (or rather, there will or won't be in December). The only way we will know is to take off the training wheels and see what happens.<br />
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Shoshana hasn't been able to have as aggressive a regimen of chemo as the protocols typically provide, given her extreme reactions to some of the chemo drugs. On the other hand, since her body doesn't seem to clear out those drugs very quickly, she may have had more exposure to them than is typical.<br />
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Either way, the situation, and we ourselves, are in the Lord's hands. That is comforting, but lately it's been more of a struggle for me to <a href="http://adam4d.com/better/">die to myself</a> and let God give me new life, day by day. <br />
<h4>
Minor Complication</h4>
At the moment, Shoshana's only issue is her digestive system. Her stool is almost always very soft, which means her digestive system is having trouble. We have been giving her various supplements and vitamins to help her out, but so far there is no magic bullet. She's not putting on much weight, but she keeps growing taller. Considering her genetics, this is not surprising at all.<br />
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<h4>
Family Matters</h4>
Shoshana is getting a little brother any day now! Elizabeth's due date is May 20th, which, given her previous track record means that she could go into labor any day now.<br />
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Elizabeth is ready to be done being pregnant. She's had a particularly rough go of it this time. Depression hit her particularly hard, and in her present state her body is prone to injury, uncomfortable, and very often in pain.<br />
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<h4>
Please be lifting us up in prayer:</h4>
<ul>
<li>For complete healing of Shoshana's leukemia</li>
<li>For resolution of Shoshana's present gastrointestinal difficulties</li>
<li>For a safe and healthy delivery of our baby boy</li>
<li>For day-by-day grace, which we need in order to rely on the Lord in every situation rather than trying to wrest it into our own control</li>
</ul>
<h4>
Pictures</h4>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAnIb2oLMT7pzODBfAM9kLLO8TZe_1fuOLKQcqMWvdLfZLQSGEjAm93vHhgTGYAAu82noTqYXx11zqEetOuTArYR6BYVdynkj_bGnn_BTbua8rJHhMaQjYhQ37IqiE1bVHdXw51I_FUE02/s1600/20140101_142101.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAnIb2oLMT7pzODBfAM9kLLO8TZe_1fuOLKQcqMWvdLfZLQSGEjAm93vHhgTGYAAu82noTqYXx11zqEetOuTArYR6BYVdynkj_bGnn_BTbua8rJHhMaQjYhQ37IqiE1bVHdXw51I_FUE02/s1600/20140101_142101.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Swinging with Daddy</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_s23ZFWvzpmtl3bZUUrMa0Yht0n5A__-gAs38_h5byDKLW9PTDvsI7jRXd69joxDCDbZ64Tlx3ySauMmVzR48iH54pIahVNYA-3lDPH96VLs25Z29gVScb8pR3y4VZeThdWRt1oPE-LI_/s1600/20140101_142054.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_s23ZFWvzpmtl3bZUUrMa0Yht0n5A__-gAs38_h5byDKLW9PTDvsI7jRXd69joxDCDbZ64Tlx3ySauMmVzR48iH54pIahVNYA-3lDPH96VLs25Z29gVScb8pR3y4VZeThdWRt1oPE-LI_/s1600/20140101_142054.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Silly Daddy</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPNgOMuEuqgr4tPF8UTTJoTr-OA6bp41mXIlrPo8ceZYyGnn-kj8dlPEWXWWsyDdACLZzUcNY7LvLuiWeKV5jbPtH0WRAi7RnV2kD0pvaNi32wG7N3D51dDFPfsPDoKxhfycQDzc9p6R2g/s1600/20140111_174623.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPNgOMuEuqgr4tPF8UTTJoTr-OA6bp41mXIlrPo8ceZYyGnn-kj8dlPEWXWWsyDdACLZzUcNY7LvLuiWeKV5jbPtH0WRAi7RnV2kD0pvaNi32wG7N3D51dDFPfsPDoKxhfycQDzc9p6R2g/s1600/20140111_174623.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With Grandpa Harris</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmhVIaA9hbo6uXA3WQlGrooHv3mdJ1-tA-eVdQldwM5fDE-1R_douo1uzM7V54upGx_UX7Clr7_pWtUokFySp_3UaAndNTiFlGZvG6GN1DpWE-qKjG0w6Z7c06X4aF9xogJEfKMoCdejYG/s1600/20140112_195809.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmhVIaA9hbo6uXA3WQlGrooHv3mdJ1-tA-eVdQldwM5fDE-1R_douo1uzM7V54upGx_UX7Clr7_pWtUokFySp_3UaAndNTiFlGZvG6GN1DpWE-qKjG0w6Z7c06X4aF9xogJEfKMoCdejYG/s1600/20140112_195809.jpg" height="180" width="320" /></a></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/AVvXsEjC0CIbVHBFNH51_KqupXV9RJ9LbzIz1nF22niGJsfGDv6jW-RKzZLvo73KWI08t6SmGebZsad3n6rTYhZhL_-SeEuol_faKVGnCwMtLYaSCwLbxsD5VtuN48JKjF2UdIj9yGh7nHQi7ZjP/s1600/20140112_195746.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC0CIbVHBFNH51_KqupXV9RJ9LbzIz1nF22niGJsfGDv6jW-RKzZLvo73KWI08t6SmGebZsad3n6rTYhZhL_-SeEuol_faKVGnCwMtLYaSCwLbxsD5VtuN48JKjF2UdIj9yGh7nHQi7ZjP/s1600/20140112_195746.jpg" height="180" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Silly Faces</td></tr>
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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/AVvXsEj79_eehzmuHvMK8NS1dJWv8NIQIEdjtIjxSD59ux5ZpH9m3Mx08B0EX7MkzsY0QN_Z71tJeZCV4CebbVZ7YDNWe1EBu9uE-S3hE6gR81RITErMWDP9xXbXgLiGtQgTLx_7aeD96tEFCsdR/s1600/20140118_095501.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj79_eehzmuHvMK8NS1dJWv8NIQIEdjtIjxSD59ux5ZpH9m3Mx08B0EX7MkzsY0QN_Z71tJeZCV4CebbVZ7YDNWe1EBu9uE-S3hE6gR81RITErMWDP9xXbXgLiGtQgTLx_7aeD96tEFCsdR/s1600/20140118_095501.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Video chatting with Grandma and Grandpa Zwicker in a box</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw48113IIbc3lF1WPBzhvxieJsfD1TrBjStDi2_rBubS69yf2vyd3FYagPLcStfSeDBHqZpjPYJJla6Mn0oY_7NrBKEkJyauwtkBzeyegVL93YGdeRwmhuKekssvnW8WsSS3b1sggD1QKA/s1600/20140128_194606.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw48113IIbc3lF1WPBzhvxieJsfD1TrBjStDi2_rBubS69yf2vyd3FYagPLcStfSeDBHqZpjPYJJla6Mn0oY_7NrBKEkJyauwtkBzeyegVL93YGdeRwmhuKekssvnW8WsSS3b1sggD1QKA/s1600/20140128_194606.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Coloring with Mommy</td></tr>
</tbody></table>
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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/AVvXsEgj7iwYZOJIGuicOUq0vRkOTZLBz10xVVQUvWewaHPnhSK8DvoucJsSnBoqrR_D9zXqnETreh9cUVKxr3C-3ylGs5DOKplbdEPD6g_KjBCkSioGwWLFoTq4kpjfssUW3JmvzTNwBbxTlMr_/s1600/20140202_133553.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj7iwYZOJIGuicOUq0vRkOTZLBz10xVVQUvWewaHPnhSK8DvoucJsSnBoqrR_D9zXqnETreh9cUVKxr3C-3ylGs5DOKplbdEPD6g_KjBCkSioGwWLFoTq4kpjfssUW3JmvzTNwBbxTlMr_/s1600/20140202_133553.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sampling the Superbowl Guacamole</td></tr>
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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/AVvXsEg36Fu3WBMj7z8d8tj5N1N3ECFPKZyATzDKFKT9TbUMWYuahqytbHWseFKwS5uzimRkNK6xDjVoHwpf9qekJ5ClFSJnaEt3GXg2iI8lmP-QYW2hCvsxkL5MmQ5uS1rvL4ncCCap_D8Rmnlg/s1600/20140209_121226.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg36Fu3WBMj7z8d8tj5N1N3ECFPKZyATzDKFKT9TbUMWYuahqytbHWseFKwS5uzimRkNK6xDjVoHwpf9qekJ5ClFSJnaEt3GXg2iI8lmP-QYW2hCvsxkL5MmQ5uS1rvL4ncCCap_D8Rmnlg/s1600/20140209_121226.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sledding</td></tr>
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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/AVvXsEhr6Jnjbfx2y60UW_dRwhkeBoW0L_NfFkvWGEN1bCaCP8O5QRZbxi8OLWoYhp7ATCMv5fkxiVx-HqGOzEkkJvu5FoVPKnBdjZQ9FdJXU3mGyKHf_AsfdtU08W1tirshGa3SNHd13GLxqHr4/s1600/20140212_202631.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr6Jnjbfx2y60UW_dRwhkeBoW0L_NfFkvWGEN1bCaCP8O5QRZbxi8OLWoYhp7ATCMv5fkxiVx-HqGOzEkkJvu5FoVPKnBdjZQ9FdJXU3mGyKHf_AsfdtU08W1tirshGa3SNHd13GLxqHr4/s1600/20140212_202631.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Feeling the baby move</td></tr>
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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/AVvXsEiFexireEW4H8_UJ3dTWVOTpbmoeSAYFUbA8H_itSqtDE9tt-kWEieuXsaRAXYj68LceZ_P0I4i5hTX7nfG5HlHgX1R_ocJr2NPSKfzOtgqPXhIGnDCwrhw4ZZzAu_7_HXG3l1aVKRkFW61/s1600/20140305_190017.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFexireEW4H8_UJ3dTWVOTpbmoeSAYFUbA8H_itSqtDE9tt-kWEieuXsaRAXYj68LceZ_P0I4i5hTX7nfG5HlHgX1R_ocJr2NPSKfzOtgqPXhIGnDCwrhw4ZZzAu_7_HXG3l1aVKRkFW61/s1600/20140305_190017.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hoberman Sphere</td></tr>
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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/AVvXsEjBbcgVKknx3cONF2_J7FN4Wc86n8mu0X18XCJoYL7Dk4_nwOMHirWIrwh22pxP22SQrxApDS_MJ1Wz7sZZC7fRtVNuUdLiW2Z7EAwjFgDvv8NIxWRUvm8PkItIMMCkh8fYTDA8HKb_XPxG/s1600/20140308_102123.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBbcgVKknx3cONF2_J7FN4Wc86n8mu0X18XCJoYL7Dk4_nwOMHirWIrwh22pxP22SQrxApDS_MJ1Wz7sZZC7fRtVNuUdLiW2Z7EAwjFgDvv8NIxWRUvm8PkItIMMCkh8fYTDA8HKb_XPxG/s1600/20140308_102123.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bath time!</td></tr>
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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/AVvXsEgfO4eM8RqvfBbfy8wC8CwSvWUFeqJt1WwLo8fzB_TwuqnBnxbTxY_wN1zLHkPKGJl7WYXBPpIQ5MhyoOhWX_g-HTrW7jRfgQ3vjRV3MQaSoPwKYMj7L3vJ_XDK-81v5hrlwW8WWhPsVETz/s1600/20140314_144909.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfO4eM8RqvfBbfy8wC8CwSvWUFeqJt1WwLo8fzB_TwuqnBnxbTxY_wN1zLHkPKGJl7WYXBPpIQ5MhyoOhWX_g-HTrW7jRfgQ3vjRV3MQaSoPwKYMj7L3vJ_XDK-81v5hrlwW8WWhPsVETz/s1600/20140314_144909.jpg" height="180" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She really likes soup with noodles</td></tr>
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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/AVvXsEhSHD1kDZZqC38R4nSjiFtN7t8l4_oPDx1HpacYIHu8gCVTE0Ovl0I7WMOIOeLmNeXijBBrhQqViYTLkwhCr0HeIgiB6GHRCra8bR_AS2vd_9L5MroCDjNPqQuzMU1l4ohmbAwsUr4SH9Ud/s1600/20140315_164412.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSHD1kDZZqC38R4nSjiFtN7t8l4_oPDx1HpacYIHu8gCVTE0Ovl0I7WMOIOeLmNeXijBBrhQqViYTLkwhCr0HeIgiB6GHRCra8bR_AS2vd_9L5MroCDjNPqQuzMU1l4ohmbAwsUr4SH9Ud/s1600/20140315_164412.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Swings</td></tr>
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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/AVvXsEi-YoBkmp_7-ouN4qvYYcty-REGFt1Ql6XUV66bSbM9vZS20YybxPr4SzEPVwp_E8Z02yKZk4pvBHjxSe5Q7smnD4m2E3fVlJ21XQhM3xEdrey44Ng6NRWCuCfUB6rSKoH1YHquxL80ZFjm/s1600/20140316_170218.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-YoBkmp_7-ouN4qvYYcty-REGFt1Ql6XUV66bSbM9vZS20YybxPr4SzEPVwp_E8Z02yKZk4pvBHjxSe5Q7smnD4m2E3fVlJ21XQhM3xEdrey44Ng6NRWCuCfUB6rSKoH1YHquxL80ZFjm/s1600/20140316_170218.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Enjoying the fruits of having 'helped' make cookies</td></tr>
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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/AVvXsEjre3T1lN6fkBBncS7rrnCL-Bu64iCBFg7SSsUplk6XpXf-_0DkJ_Ga93VzFFk3_WI6QXc_0n6ehwNDLt4MB4wtLFWEpYvY2h81Or4Uz7x7Us4x_ejcJ17Cb47CyyCHRJs081mUzZzwTmuK/s1600/20140321_113908.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjre3T1lN6fkBBncS7rrnCL-Bu64iCBFg7SSsUplk6XpXf-_0DkJ_Ga93VzFFk3_WI6QXc_0n6ehwNDLt4MB4wtLFWEpYvY2h81Or4Uz7x7Us4x_ejcJ17Cb47CyyCHRJs081mUzZzwTmuK/s1600/20140321_113908.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Visiting the Reading Boy statue at the Renton Library</td></tr>
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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/AVvXsEgDWuh6Z4rlnO32opLlFXboONU6ALELfUjkH4x2Ti9TTlejYbDBfL6FYhyphenhyphenjj0N_yE8woZ4fwUYRZTZN7HDKD_yo8f7BSHkvrtygK_od2_fUx74ZvmQ6t_B9KPYgnP1jVKHqHLyqBkOdPme-/s1600/20140321_115514.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDWuh6Z4rlnO32opLlFXboONU6ALELfUjkH4x2Ti9TTlejYbDBfL6FYhyphenhyphenjj0N_yE8woZ4fwUYRZTZN7HDKD_yo8f7BSHkvrtygK_od2_fUx74ZvmQ6t_B9KPYgnP1jVKHqHLyqBkOdPme-/s1600/20140321_115514.jpg" height="180" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Reading with Daddy</td></tr>
</tbody></table>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeY-DEdx-nmSbTOPdHR1oD1nxWcMAm6o3Z0GV9WYT8VG3sWKgktQ0ruLf_fgva7KReU8waB8e5901IBRKC_MJ5Q52Ec1gB4u95WCc9gn_mSvPma_u-KPVIsg6NpATHj3MhcT51oLcxJTwC/s1600/20140321_124430.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeY-DEdx-nmSbTOPdHR1oD1nxWcMAm6o3Z0GV9WYT8VG3sWKgktQ0ruLf_fgva7KReU8waB8e5901IBRKC_MJ5Q52Ec1gB4u95WCc9gn_mSvPma_u-KPVIsg6NpATHj3MhcT51oLcxJTwC/s1600/20140321_124430.jpg" height="240" width="320" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFYLoCZLYZenBzBs6y4gSalb-hY_ZZSKFrWelMbt_Nshwenz_nOlzn6k_xUSYAPXROsfI1Vf373WGByIaHkn4eLAg2Lg9pnarWk4O_wTtThPGrIy01YIMjnMHihlv72IZS0HlZlpFR5QvH/s1600/20140329_123621.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFYLoCZLYZenBzBs6y4gSalb-hY_ZZSKFrWelMbt_Nshwenz_nOlzn6k_xUSYAPXROsfI1Vf373WGByIaHkn4eLAg2Lg9pnarWk4O_wTtThPGrIy01YIMjnMHihlv72IZS0HlZlpFR5QvH/s1600/20140329_123621.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our goat gave birth to two kids</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The girls got a bunk bed</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Dancing!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Stylish umbrellas and matching raincoats</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Twirling in a dress</td></tr>
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burndivehttp://www.blogger.com/profile/05133129688998029494noreply@blogger.com0tag:blogger.com,1999:blog-2131549230583424790.post-22417157963370601162014-03-23T22:45:00.002-07:002014-03-23T22:45:55.623-07:00Deifying Food<span style="font-family: Arial, Helvetica, sans-serif;">Our journey with food continues to evolve along with Shoshana's recovery. When cancer cells were running rampant throughout her bone marrow and blood stream we did everything in our non-medical power to help her body heal itself, avoiding foods and toxins that would only make recovery more difficult. I even refused to allow her to be fed Pedialyte during recovery from a bout of diarrhea because I didn't trust the brand. Instead, we fed her a dilute orange juice concoction thanks to the dietitian on her case. For the year that she had a feeding tube we made her a homemade "formula" with whole, organic foods rather than using the whey protein and sugar (2nd ingredient!) formula provided by the hospital which caused her heart rate to slowly but steadily increase to the point which the physical therapist did not feel comfortable playing games with her and also caused severe, caustic diarrhea.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Throughout these last 18 months we have done the best we could with the resources we had. Now that things are a little calmer we have more time to contemplate our long-term lifestyle plan. One of the things that has been tumbling through my mind is "why us?" and "why her?" Many of my family members have already had experience with some form of cancer. I, myself, also dealt with a case of "pre-cancerous cells" in my thyroid which threw my body chemistry off so badly I nearly had to drop out of nursing school. For that reason, we had already implemented many of the major "anti-cancer" lifestyle changes such as removing all toxic cleaners and self care products from our home, eating a wide variety of organic vegetables, and growing as much of our own produce as possible. To have our first family case of childhood cancer is frustrating on so many levels, especially since we already have a relatively "clean" lifestyle.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Which gets me thinking: how much more can and should we do from here on out? It would be lovely to have an easy answer of "if only this then that" but life is not that straightforward. I remember being shocked to learn at the very beginning of our journey that leukemia is one of the few cancers that has virtually no links with diet. Other than pockets of incidence around nuclear disasters and heavy metals in the soil, it touches every continent, every people group, every culture, every neighborhood virtually equally. Even the Amish people have nearly the exact same amount of risk as the general U.S. population!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Recently I came across an article called "<a href="http://www.stacymakescents.com/food-is-not-your-god">Food Is Not Your God</a>" which summed up my thoughts on the whole foods movement very well. "I’ve sensed something very disturbing in the Whole Foods World…it’s something that has bothered me to my very core and I’m speaking out against it. <strong class="amzn-taggable-text">FOOD IS NOT OUR SAVIOR."</strong></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I would be nice to be able to say with confidence that if we only consume <i>these</i> things in <i>this</i> proportion, we will live long, healthy lives. But the world doesn't work that way. According to the Bible, "</span><span class="text Rom-8-20" id="en-NLT-28098" style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 16px;">Against its will, all creation was subjected to God’s curse. But with eager hope,</span><span class="text Rom-8-21" id="en-NLT-28099" style="background-color: white; font-family: Arial, Helvetica, sans-serif; font-size: 16px;"><span class="versenum" style="font-size: 0.75em; font-weight: bold; vertical-align: top;"> </span>the creation looks forward to the day when it will join God’s c</span><span style="font-family: Arial, Helvetica, sans-serif;"><span class="text Rom-8-21" style="background-color: white;">hildren in glorious freedom from death and decay (Rom. 8:20-21, NLT)." The Earth itself is cursed and the whole situation just sucks! But over time working so diligently to learn about the links between diet and cancer began to focus my focus from God to me and my efforts. "</span><span style="background-color: white; color: #333333; line-height: 25.600000381469727px;">If it were true that eating whole foods would keep you healthy and free from tragedy, then a drug addict would never carry a baby to full term…and a one-Coke-per day elderly man wouldn’t live until the ripe old age of 95. </span><strong class="amzn-taggable-text" style="background-color: white; color: #333333; line-height: 25.600000381469727px;">Food cannot save you – Jesus can save you</strong><span class="amzn-taggable-text" style="background-color: white; color: #333333; line-height: 25.600000381469727px;"> (Food Is Not Your God)</span><span style="background-color: white; color: #333333; line-height: 25.600000381469727px;">." </span></span><br />
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<span style="color: #333333; font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; line-height: 25.600000381469727px;">Besides that, there are so many contradictions! Grains are bad, grains are good, butter is bad, butter is okay as long as you know the cows it came from, all red meat is bad, take two tablespoons asparagus puree morning and night, etc. etc. ad nauseum. </span></span><span style="background-color: white; color: #333333; font-family: Arial, Helvetica, sans-serif; line-height: 25.600000381469727px;">Clearly, when we eat well with whole foods, lots of vegetables, responsibly grown meats, we feel better. We are generally healthier. But we are not always entirely healthy. Food is not the answer to all our troubles. Jesus is.</span><br />
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<span style="color: #333333; font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; line-height: 25.600000381469727px;">Much like the author of the blog I linked earlier, I will continue to learn how to live and eat responsibly for the glory of God but I need to refocus so to give Him all the credit for our good lives, not the food we eat. There are a few principles that we will continue to live by such as avoiding known toxins, eating organically when possible, making the majority of our food at home, and balancing meat and vegetable protein sources. </span></span><br />
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<span style="color: #333333; font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; line-height: 25.600000381469727px;">Thank you for continuing to walk through this journey with us. It is not over but we are finally getting to the point where we sometimes forget her appointments!</span></span><br />
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<span style="color: #333333; font-family: Arial, Helvetica, sans-serif;"><span style="background-color: white; line-height: 25.600000381469727px;">Just for fun, I'd like to share a delicious recipe I found earlier. I made plenty for leftovers as well as the freezer. In general it's hard for me to find yummy freezer meals that aren't full of meat and I want to be prepared for this baby coming up. If my previous pregnancies are any kind of a predictor, we only have about six more weeks until we get to meet little Judah!</span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.eatingwell.com/recipes/leek_asparagus_herb_soup.html">Leek Asparagus and Herb Soup</a></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I like my soup with a little more texture so I did not puree the potatoes along with everything else so it was a rich and creamy stock with small potato chunks. I also spiced it a little more with some cumin and turmeric. Even the girls loved it!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.countrycleaver.com/2012/11/irish-cream-and-chocolate-silk-pie.html">Irish Cream and Chocolate Silk Pie</a></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">And for something on the other end of the health spectrum and in recognition of the recent St. Patrick's day, this recipe is from Wanna Be A Country Cleaver created by a friend from high school. </span>Linguisticnursehttp://www.blogger.com/profile/02034864622410548219noreply@blogger.com0tag:blogger.com,1999:blog-2131549230583424790.post-25751616076304539002013-11-16T19:35:00.004-08:002013-11-16T19:39:14.355-08:00MaintenanceIt's been a while since I last posted on this blog, so I'm going to summarize without a whole lot of detail. With the reduced load of chemo, Shoshana's hair has begun to come back, to the point where she (barely) can have pigtails.<br />
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<h3>
Medical Stuff </h3>
The biggest news is that her trach came out at the beginning of September! There's still a little hole that oozes and bubbles a bit, especially when she gets upset. <br />
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With the trach out, we lost our home care nursing, but that's because her care has gotten an order of magnitude simpler. We reduced her medication schedule to three times a day, and we are in the process of weaning her off of some of the medications.<br />
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Without the trach, Shoshana has been able to eat more and more on her own. We have recently been going for as long as we can without the feeding tube. This means that she needs to swallow all of her meds on her own (even some pills, which she has gotten very good at), and also that she needs to be consistently eating enough food to get enough nutrition and calories for her growing and healing body.<br />
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We still make her formula several days a week even with the tube out, and she drinks several cup-fulls during the day, in addition to eating solid food. Since it doesn't have to go through a food pump, we can be a bit more flexible with the ingredients, which otherwise might clog the machine.<br />
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<h3>
Dexamethasone </h3>
One issue that we've had is Shoshana's steroid cycles. Once a month, she gets five days of intense dexamethazone. For the first few cycles in the maintenance phase, our night nurses noticed that Shoshana's heart rate would be dangerously low while she was sleeping, several times during the night. The nurse would rouse her, and her heart rate would go back up, but this meant that Shoshana wasn't able to complete her deep sleep cycle. Each month during her steroid cycle, it would be worse. We finally got a cardiologist appointment, and after experiencing the same symptoms again, we had to stop the cycle one day early and put her on a 24-hour heart monitor.<br />
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After that, the doctors reduced her steroid dose by 25%. In the latest cycle, we haven't see nearly the same heart rate nose dives. The issue with this is that Shoshana is already not getting one of the usual chemo meds at all (vincristine), and now she is getting a reduced dose of dexamethasone. This is a bit scary for me, because it potentially decreases the effectiveness of the maintenance chemo, the effect of which should be to tease out any cancerous cells still left in her body and then wipe them out. Our working theory is that Shoshana's body doesn't process through these classes of medications as quickly as typical people due to her particular genetic makeup, and she is therefore exposed to the drug the same amount as another person would be, since its effect on her body lasts longer. It's better for her to take this risk than for her heart to stop in the middle of the night.<br />
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My comfort is that I trust the Lord, who holds Shoshana in His hands. Not a hair falls from her head that He doesn't know about (and there have been many), and she is even more precious to Him than she is to us. Whatever happens, I know that He will not abandon us, and that His plan for Shoshana and for Elizabeth and me and Abigail is ultimately wise and kind and good. <br />
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<h3>
Other Stuff</h3>
With the trach out, we can travel! More than an hour away from Seattle Children's Hospital! We flew down to Southern California, and spent two weeks visiting friends and family (and Sea World, Disneyland, Knott's Berry Farm, and the beach). It was a blast, and Shoshana had a great time. I'm glad the girls got to spend time with my (Tim's) parents and grandmother especially, as well as their cousin Connor (who can run circles around the girls, which is saying a lot). <br />
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We also spent two days at Great Wolf Lodge (an indoor waterpark resort) as an early Christmas present to our local family (as well as some friends who got to come too).<br />
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Specific Items for Prayer:<br />
<ul>
<li>That Shoshana's treatment will be effective, despite her taking a reduced chemo regimen. </li>
<li>For the safe arrival of Shoshana and Abigail's new baby brother or sister, who is due to arrive next May!</li>
<li>On
that note, please pray for Elizabeth (and Tim!). Pregnancy makes
Elizabeth's medication for depression much less effective, which makes
things more difficult all around.</li>
</ul>
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<h3>
Photos</h3>
As it's been a while, there are lots of these.<br />
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<tr><td class="tr-caption" style="text-align: center;">Hiking!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Trach out!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2EaGjvKyJrQ1ITWdna-m9fIPAh4QmENs42IqjnD6wud0j3CqzaULO9_T7VeCqHq_6h2JadrU939lre9lcW3gU4CfvdNCiHUOxf_ACIIVPUWbYmEHh_CAq952lUCPvNp4CicwLKvy-8mtk/s1600/20130919_170623.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2EaGjvKyJrQ1ITWdna-m9fIPAh4QmENs42IqjnD6wud0j3CqzaULO9_T7VeCqHq_6h2JadrU939lre9lcW3gU4CfvdNCiHUOxf_ACIIVPUWbYmEHh_CAq952lUCPvNp4CicwLKvy-8mtk/s320/20130919_170623.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Puyallup Fair</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbgSDJgNv1GeXd3Bd-rYoYBjgcP62Nn8RJpG6NjCCsEaJC7_FvDiGIV0p82wXRPa3E34loithfQBnMcZELKsj6xmzMydGPsD1VGoT7Mk6toXzhlyZAEX48jdlRDDjjeXcdDDtLGQYcJk6L/s1600/20130921_150718.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbgSDJgNv1GeXd3Bd-rYoYBjgcP62Nn8RJpG6NjCCsEaJC7_FvDiGIV0p82wXRPa3E34loithfQBnMcZELKsj6xmzMydGPsD1VGoT7Mk6toXzhlyZAEX48jdlRDDjjeXcdDDtLGQYcJk6L/s320/20130921_150718.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tacoma Children's Museum</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZzIPjmhY2Hf3yTbZIJDikbebhJ0KbcPrqAD7gvlb4kzJbVIKCZVpz4y58mZbgYEB70pJdnSfgSr9fgF-b0xV_3ZAqnO-scmEOQ-X81lsCJhKR_xhUUy9EMX0w5xI5OZJC6s3uBQWtSSsx/s1600/20131004_140849.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZzIPjmhY2Hf3yTbZIJDikbebhJ0KbcPrqAD7gvlb4kzJbVIKCZVpz4y58mZbgYEB70pJdnSfgSr9fgF-b0xV_3ZAqnO-scmEOQ-X81lsCJhKR_xhUUy9EMX0w5xI5OZJC6s3uBQWtSSsx/s320/20131004_140849.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sea World</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeQyAr__5D4H4PdQgCqlXQN01RtBbuJNARYLDqYie4c8kAOIdaVAAcubZ_d24giu1s-QUZHtoUzSNr6iNg_kfgEMlPRAMtgsccuM6RRXJj22pbGWRP_Ez3-KLlzVCZ0Wl7JZGorYlj8sje/s1600/20131007_145250-MOTION.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeQyAr__5D4H4PdQgCqlXQN01RtBbuJNARYLDqYie4c8kAOIdaVAAcubZ_d24giu1s-QUZHtoUzSNr6iNg_kfgEMlPRAMtgsccuM6RRXJj22pbGWRP_Ez3-KLlzVCZ0Wl7JZGorYlj8sje/s320/20131007_145250-MOTION.gif" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cousin Connor</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSTofzQJvOVCAdTTgzKY08TULft1GaHy-88HP419UMPRUZpx0H4v9J7O8mLipXZQq5GrfOu7jvirCxL00dJDGAScudc1u8RcQBU0I83fg2CoyXP9BWvrCI0Ipt52WRqp_53kf9ln1gKi9a/s1600/20131008_092448.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSTofzQJvOVCAdTTgzKY08TULft1GaHy-88HP419UMPRUZpx0H4v9J7O8mLipXZQq5GrfOu7jvirCxL00dJDGAScudc1u8RcQBU0I83fg2CoyXP9BWvrCI0Ipt52WRqp_53kf9ln1gKi9a/s320/20131008_092448.jpg" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jessie Hat (to go with her boots)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-F0e1kIVXN95pjpxVpK9j6oafuUafzOtx_RLK6rpbZ2hygNlIuF74YhBAM8k_D1w_1VrXZcsOd5eoU6cUxL-ndbTFP64NiNkg1fT5YtRDqjs534z27fFwSRbkJl2pw7t-gsErIClC0P6R/s1600/20131008_191855.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-F0e1kIVXN95pjpxVpK9j6oafuUafzOtx_RLK6rpbZ2hygNlIuF74YhBAM8k_D1w_1VrXZcsOd5eoU6cUxL-ndbTFP64NiNkg1fT5YtRDqjs534z27fFwSRbkJl2pw7t-gsErIClC0P6R/s320/20131008_191855.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After Disneyland, day 1</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCVe5R7phDskcJ-k9Wr0CIwlQIZj74WGyYauYJNg9Yg3XUeY0fdPrs33ZqUF35dn61SUySK0MqFXiPcR-7UH5CYWJDZx0y0lxLdaSFG6d9XqMA69ML0sk8wp87A4dVsf0lT-449JuGoUyf/s1600/20131013_164531.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCVe5R7phDskcJ-k9Wr0CIwlQIZj74WGyYauYJNg9Yg3XUeY0fdPrs33ZqUF35dn61SUySK0MqFXiPcR-7UH5CYWJDZx0y0lxLdaSFG6d9XqMA69ML0sk8wp87A4dVsf0lT-449JuGoUyf/s320/20131013_164531.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grandma and Great Grandma</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Disneyland, day 2</td></tr>
</tbody></table>
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<tr><td class="tr-caption" style="text-align: center;">Trick-or-treating at Pike Place Market</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Uncle Josh</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Great Wolf Lodge</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">First Ambulance ride. Shoshana was displaying some strange symptoms late one night, and was also having trouble breathing to the point where we didn't want to drive her to the hospital ourselves without oxygen equipment.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">First pigtails in over a year!</td></tr>
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burndivehttp://www.blogger.com/profile/05133129688998029494noreply@blogger.com2tag:blogger.com,1999:blog-2131549230583424790.post-37631575428700321942013-07-08T00:57:00.001-07:002013-07-08T01:02:41.327-07:00Shoshana Is FourLife continues to happen around here. Shoshana's original birthday party had to be postponed because she came down with a case of shingles and spent a week (including her birthday) in the hospital.<br />
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The "maintenance" phase of Shoshana's chemo has been otherwise blessedly uneventful. We are now working with a new home care nursing agency, and they more able to fill the shifts, although they are still spinning up the day shift, and we have had a few nights without a nurse.<br />
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We held Shoshana's party this weekend. Elizabeth wrote <a href="http://bit.ly/1d54skC">a post about the party</a> on the farm blog.<br />
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Meanwhile, the girls got to be in a friend's wedding, and their new baby cousin was born! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIT7CxT7YlQE8WSxD42J6fHQvDIAdeLC2Gh87zgy_nlaMaVKGsE-ntI9f7_kyPwsCXxpLhrlpNx7s9CQMBUmVpwLY8GKupWvYbPikt_Et-q7MWgAWZDgSW28jSX9_4JEm1PqGmAuUBbVRA/s1600/20130616_132003.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIT7CxT7YlQE8WSxD42J6fHQvDIAdeLC2Gh87zgy_nlaMaVKGsE-ntI9f7_kyPwsCXxpLhrlpNx7s9CQMBUmVpwLY8GKupWvYbPikt_Et-q7MWgAWZDgSW28jSX9_4JEm1PqGmAuUBbVRA/s320/20130616_132003.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The night nurse decorated Shoshana's room while she slept.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Mint!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqztP3uxwXcurudxNFBxtuzZEwkcTCk18PvRcqQl12brflLm8nN8_bbrdxiBRUWWOAtDG87qSt_BmNbMyLY3aMabfUVhlUjtej2RAsykhy6nZ8MN6kxIISb0CcP1XphEahHh5PiyGQj3xX/s1600/20130628_174432-MOTION.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqztP3uxwXcurudxNFBxtuzZEwkcTCk18PvRcqQl12brflLm8nN8_bbrdxiBRUWWOAtDG87qSt_BmNbMyLY3aMabfUVhlUjtej2RAsykhy6nZ8MN6kxIISb0CcP1XphEahHh5PiyGQj3xX/s320/20130628_174432-MOTION.gif" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This was the rehearsal. I was too busy to take pictures during the wedding.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfJ4desCg7nqnM6lzTeMbGDp6W_jO1DJdU_FsOXWAPgjCRFzjVdU9fQOWR7TjvVYrb0ik1_zx9PQHo4OZRq3xj_bd3__0QAX0ySxlltkhNaQ-rO3nptUCL5_SamPqGzeSOhvkHkgAM8TqC/s1600/20130628_175053-MOTION.gif" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfJ4desCg7nqnM6lzTeMbGDp6W_jO1DJdU_FsOXWAPgjCRFzjVdU9fQOWR7TjvVYrb0ik1_zx9PQHo4OZRq3xj_bd3__0QAX0ySxlltkhNaQ-rO3nptUCL5_SamPqGzeSOhvkHkgAM8TqC/s320/20130628_175053-MOTION.gif" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">There's that tongue...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7kvXjdXhj-q8TNylJsaIMzf72eConHX-q61HpNKKrwJ1D7RAco2IKAg1UTK0cp60qOKU1VWehF3L8B7MCY1CpYttGEQGkq2QcDOa_sENzkE4Q2uIocjDLo6aarngUcm7CTOoq4cCJ67oK/s1600/20130628_175114.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7kvXjdXhj-q8TNylJsaIMzf72eConHX-q61HpNKKrwJ1D7RAco2IKAg1UTK0cp60qOKU1VWehF3L8B7MCY1CpYttGEQGkq2QcDOa_sENzkE4Q2uIocjDLo6aarngUcm7CTOoq4cCJ67oK/s320/20130628_175114.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">...and then this happened.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSETfnHrliExAx7zMT3hjlt34lAY6DHWYrsOrU5-uIQO0QGxPXrzfcanxWDrdZmJYO3lgOmA91J_p8kZZHa6U6DFcKXQX26D9oNkctXnem895BDuPO_kLSQw_SfzZnVAoFbwu4601Kd58x/s1600/20130701_182012.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSETfnHrliExAx7zMT3hjlt34lAY6DHWYrsOrU5-uIQO0QGxPXrzfcanxWDrdZmJYO3lgOmA91J_p8kZZHa6U6DFcKXQX26D9oNkctXnem895BDuPO_kLSQw_SfzZnVAoFbwu4601Kd58x/s320/20130701_182012.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cousin Kora</td></tr>
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<br />burndivehttp://www.blogger.com/profile/05133129688998029494noreply@blogger.com1tag:blogger.com,1999:blog-2131549230583424790.post-78733314752175859242013-06-07T23:29:00.002-07:002013-06-07T23:44:30.988-07:00The Trach Is Staying In For NowI (Tim) haven't had a chance to post an update to this blog in a while, and I don't have a whole lot of time right now, so this will be relatively short and possibly scant on some of the details.<br />
<br />
<h3>
Vincristine </h3>
After Shoshana had received her (reduced) doses of vincristine for the delayed intensification phase, we met with the doctors and went over the possible options for vincristine in the future. The conclusion which we all reached (family and doctors alike) is that Shoshana won't be getting any more vincristine!<br />
<ul>
<li>Shoshana's neuropathy from vincristine is so severe that, if she were to take it, even at a reduced dose, it would likely delay and derail her normal course of treatment.</li>
<li>The European treatment protocols which are similar to the one she is on have eliminated vincristine from this stage of the treatment onward. The U.S. protocols are in the process of evaluating whether they can do the same thing.</li>
</ul>
Basically, vincristine is simply being dropped from her treatment schedule, since for her it is doing more harm than good, and the amount of good it could do at this stage for the entire patient population is being re-evaluated. <br />
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Praise the Lord!<br />
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<h3>
Recently</h3>
Shoshana hasn't been overnight in the hospital in quite a long time, but in the month of May we had 17 clinic visits (which means there were more days that she visited the hospital than she didn't). It's been great having her home, not only for her sake (and she does so much better at home!), but for Elizabeth and me, and also Abigail. (Not to mention Kristen, Elizabeth's mom, and the Predmore family, who have been an invaluable help.) Having her home, we are much less stretched.<br />
<br />
Even so, for the past month or so we have been struggling because the two nursing agencies have not collectively been able to provide us with daytime nursing care. We are switching to another agency (who is hiring away our night-time nursing staff), so hopefully we will get a bit of relief in that regard.<br />
<br />
<h3>
Today</h3>
This afternoon, Shoshana went in and was put under anesthesia in order for the ENT doctor to examine her vocal cords and trachea. The plan was that if everything looked OK, he would observe her overnight with a smaller trach tube, which would be blocked off, so that they could evaluate her breathing overnight, and if everything looked good, the trach would come out.<br />
<br />
Shoshana's vocal cords looked like they were functioning normally (Yay!), but unfortunately there is some scar tissue in the tissue surrounding the trachea, which is causing walls of the air passageway to constrict. (Think of a rubber band or a balloon with a glob of harder rubber that distorts how the rest of it will stretch and move.) There was some improvement from the last time, but not enough for the trach to come out now, considering the fact that she's still undergoing treatment for cancer.<br />
<br />
So, Shoshana's trach will remain in place for at least the next few months, at which point, they will take another look and re-evaluate. At some point, she will need to have surgery to deal with the scar tissue. (I wasn't there and it hasn't been explained to me, so the details on that will need to come from Liz--bug her for an update.)<br />
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<h3>
Items for prayer:</h3>
<ul>
<li>Praise that Shoshana has been doing so well, and has been able to spend so much time at home with her family! </li>
<li>Ask that Shoshana's scar tissue will be resolved soon, and her breathing pathways restored to normal</li>
<li>For our home care nursing situation, that we would once again have daytime nursing, as well as nights.</li>
<li>Thankfulness, for those who have been supporting us, and even occasionally spending "normal" time with us. </li>
</ul>
<br />
That's all I have for now. Here are some random pictures, since it's been a while:<br />
<br />
<h3>
Pictures</h3>
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burndivehttp://www.blogger.com/profile/05133129688998029494noreply@blogger.com1tag:blogger.com,1999:blog-2131549230583424790.post-6269301575090060352013-03-27T00:52:00.001-07:002013-03-27T00:53:49.043-07:00Pain Management and Elevator MusicShoshana recently started a stage of chemo called Delayed Intensification. In some ways, this stage is considered to be the most difficult, the most intense. Not only does she have four chemo drugs that she has seen before, including frequent vincristine, she gets a new one called cytarabine which causes a lot of nausea. After the first day (Friday) in which she got three chemos, including vincristine, her pain once again got out of control. We brought her back to the hospital on Monday morning because we couldn't give her any more pain medicine despite her obvious discomfort. And the pain medicine we have been using for a while wasn't working as well as it used to.<br />
<br />
I told the team that the plan had to change or she wasn't getting any more vincristine. Unfortunately, that would mean a much higher chance of relapse, but she would not be the first case that simply could not tolerate the side effects of vincristine. After many conferences with the chemo team and the pain team we decided there was another option: we increased her gabapentin sharply for three days around the second weekly dose of vincristine (and other drugs, but the big problem is vincristine).<br />
<br />
And, as we all know, she doesn't tolerate medications like most people...<br />
<br />
We realized she was "off" when she didn't sleep most of Saturday night. Thinking back she had begun shivering the night before complaining of being cold. The on-call fellow said to bring her in to the ER for possible gabapentin toxicity. Once she got there, however, they decided it might be sepsis instead. Her temperatures had been normal, labs were normal, blood cultures wouldn't come back for a few more days. Since there was very little to do at that point other than go back to the lower dosage of gabapentin they sent her home. She was pretty hyper all that day and didn't sleep from 10am to 10pm until I gave her a small dose of melatonin (per Dr.'s orders). She has been doing relatively well since then; the insomnia has resolved and the hyperactivity has made way for a more "normal," silly, super-active Shoshana. Which generally means she is feeling good.<br />
<br />
Oh, and that ER visit was the first time I was at work while anything new was going on with Shoshana. I was on my phone a lot. But I somehow still managed to see a lot of patients.<br />
<br />
Other than the gabapentin toxicity this last weekend went rather well. Her pain was generally a secondary issue to whatever else was going on. We are hopeful that with a tweak of the gabapentin dosage she will have decent pain control this weekend without going all hyper and insomnolent for a few days. By the way, the typical reaction to too much gabapentin is sleepiness. The same goes for Benadryl but she reacts to that with hyperactivity too.<br />
<br />
****<br />
Operation: Harass the Insurance Company<br />
<br />
On a related note, we have been working with a second home health agency to take our case since the first is a rather small company which is having difficulty filling our needs. I found out on Thursday that the second agency's petition to be an exception to the "in network" rule was denied. <br />
<br />
Now... why is the claim denied? Because someone didn't do their job.<br />
<br />
I was on the phone with Blue Cross Blue Shield of Illinois off and on Thursday and Friday trying to get things figured out. Bouncing around departments, many minutes on hold, lots of phone tag and I thought I understood the problem. They somehow got the idea that there were 40 other home health agencies to choose from in my network. I heard that and nearly choked. I doubt there is a 25 mile radius in the United States, let alone the world, that has that many home health agencies, let alone that will take pediatrics, let alone Shoshana's complicated case. Not only that, the request was filed several weeks ago, at least one week before our main day shift nurse put in her three weeks notice. By this time she was doing her last shift and most of the next week was not covered due to her absence. How did it take that long to be denied in the first place?<br />
<br />
I tried in vain to motivate the insurance people to make this a top priority because when I don't have a nurse I have to use an ambulance for transport and Shoshana will be admitted quicker and discharged slower without a home health nurse. This is expensive, people! How is getting a nurse on the case not a priority!<br />
<br />
They do nothing.<br />
<br />
Monday rolls around and I'm on the phone from 9am to 4pm either on hold, talking to someone, bouncing around departments or waiting no more than an hour for a call back. Oh, and in the middle of this saga our case manager nurse decides to stop answering my calls or responding to my voicemails. Thanks for nothing Marie.<br />
<br />
By the time the business day is coming to a close Marie's supervisor FINALLY understands what I'm asking of her (she got hung up on a separate issue) and says I need to talk to a totally different department but now it's too late. And I snapped. What I'm trying is not working and now you're putting my daughter at risk! I had gotten the impression earlier that day that they were not interested in doing their job so I had to do their job to find out the truth about why the "out of network" claim was denied. I asked her to write this down and make sure it is forwarded to the complaints department. I also gave myself permission to use some colorful language if I thought it would help to get my point across.<br />
<br />
Did you know that there are 44 other home health agencies in my area? I
didn't. Neither did my agencies. Because they don't exist. Because
someone at your company just punched numbers into their search engine, saw there were 44
hits, and denied the claim. Never mind the fact that some of the hits
aren't even home health agencies. Never mind that there were many
entries for the same company (four for Gentiva, seven for Multicare, for
example). Never mind that THEY DON'T TAKE PEDIATRIC PATIENTS! Out of 44 hits I
made 22 phone calls. Some of them only did visiting nurse services such
as infusions or wound care, one of them no longer exists, several of the
phone numbers on the search engine were wrong so I had to find the
numbers myself, and almost all of them don't take peds. Not only that,
none of them could suggest an agency that does take peds! My search brought up two relevant hits. One agency is in Bremerton. As in, across the Puget Sound. You need a ferry. To make a two hour commute. I know this because I almost went there a few times for work. The second one is in West Seattle. But do we really have to start the process from scratch when we've already made so much progress with Alliance? They have a nurse waiting to take our case! In the meantime you are putting my daughter at risk for serious complications and you are putting your own pocketbooks at risk! How are you not motivated to fix this? Why am I doing your job?<br />
<br />
I unload my chest and took a breath. <br />
<br />
I thank her for taking that down then tell her that I expect a call from that relevant department first thing in the morning. That means 6:30am my time. I don't care. This has to be fixed!<br />
<br />
They don't call.<br />
<br />
Once the heckticness of the morning dies down I call the supervisor again. Miracle of miracles, the out of network request has been reopened and bundled with the review of "medical necessity" already scheduled with the medical director. So if the medical director decides that Shoshana does still need regular home nursing then they will automatically approve Alliance to do some of that work. Hallelujah! It's totally going to be approved, by the way. I'm sure we're going to have several of these medical necessity reviews simply because Shoshana's is a complicated, expensive case. Just for reference: by the time Shoshana came home in December from her three month inpatient saga her care cost just under $1 million. <br />
<br />
Let's summarize: Blue Cross Blue Shield of Illinois worked on a case for four weeks, came to a half-assed assessment of the situation, and didn't follow up with anyone. I called constantly for three days before finally getting to the right people, asking exactly the right questions, listening to them repeat themselves over and over again, redirecting their thought processes, and pushing our issue through to the medical director. Oh, and listening to their poor excuse for on-hold music.<br />
<br />
BCBS: 0<br />
Me: 298578384846390240<br />
<br />
After all of this I feel like I've been in a three day wrestling match and I have the worst elevator music stuck in my head. It was lame, cliche, pathetic, without pride. It looped every three minutes with three unrelated fragments. This could be used as a torture device. It nearly made me hang up from the sheer pain of it. <br />
<br />
Enough of that. Let's listen to little girls laughing. Abi had been carrying around Shoshana's "stomp shoes" most of the day and was getting very angry when it wouldn't stay on her foot. So mom put them on and the girls are super cute!... and then Shoshana throws up. This stuff happens really fast. But let's just laugh at the girls for now.<br />
<br />
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<br />Linguisticnursehttp://www.blogger.com/profile/02034864622410548219noreply@blogger.com1tag:blogger.com,1999:blog-2131549230583424790.post-74734824840516173422013-03-09T22:57:00.001-08:002014-04-28T15:56:15.820-07:00The GrindSince our last blog post Shoshana was home for seven days before once again having nausea, vomiting, diarrhea, and overall dehydration.<br />
<br />
The first day was, again, gut rest then instead of going straight to formula they proposed starting with pedialyte instead. A quick google search confirmed my suspicions that the formulation of pedialyte had ingredients that made me uncomfortable. Namely, the dyes and "natural and artificial flavors," ingredients and labeling ambiguity that are both banned in the UK. It took a bit of back and forth discussion (read: standing my ground) to get the staff to agree to a formulation that included some sort of food such as juice, water, salt, and minerals. Why does that have to be so difficult? All over the world rehydration does a good job in the majority of cases without pedialyte. Where I was in Mexico the prescription for gut issues always included <i>limonada</i> since limes were abundantly available. I managed to convince the team to allow a juice formulation once I said that if that doesn't work I'm more than willing to try dye-free pedialyte. But before we knee-jerk to the industrial formulation which only includes the base chemicals, vitamins, and minerals and "natural and artificial flavors" can we try some food? I understand there are cases in which the body needs a temporary rest from processing foods but still needs base nutrition but I was not convinced this was the time for Shoshana.<br />
<br />
The gut rest and slow rehydration had an unexpected side effect: Shoshana ate! Like, constantly! Not big amounts but she was almost always putting something in her mouth. This did not happen last time. She even ate a few things that she hadn't touched since before her diagnosis such as oranges, PB&J, and granola.<br />
<br />
As we continued to brainstorm what could be causing Shoshana's latest gut issues Dr. Labriola, our pediatric oncology naturopath, suggested a few things and the hospital nutritionist concurred: we changed the hemp milk to rice milk and we purposed to feed her with rest breaks and a few spoonfuls of yogurt at the beginning of each tube feeding to support the digestive flora. This seemed to help since she continued to want to eat even as we worked our way up to the goal calories per day. Within a few days she improved greatly and we made it home on Friday afternoon. Other than an extra dose of pain meds and going to bed early she seemed normal.<br />
<br />
Tim and I got to sleep in the same bed at the same time for the first time in a week... for one hour. The night nurse knocked and informed us that Shoshana was very uncomfortable all evening and has been mounting a fever over the last 30 minutes and the latest reading was 38.5C/101.3F. In all the time Shoshana has been neutropenic this is only the first or maybe second time since she has gone over 101F. She runs low 97's like I do and a change of two degrees is enough to make anyone feel crummy. I asked Tim to take her to the ER because I was so wiped out and sleep deprived and the weekend is usually his shift anyway.<br />
<br />
By the way, that sets a new record! Discharged at 2pm, re-admitted 12 hours later. That is not the shortest time between trips to the hospital but it is the shortest time between admits. At least she got to have a bath with little sister which they both thoroughly enjoyed. <br />
<br />
Now she tests positive for rotavirus which is known for viral respiratory sorts of infections. She is on two broad-spectrum antibiotics which put her at high risk for another round of C-diff. Once the microbiology report comes back tomorrow they will be able to change those to more specific drugs. She had a lot of pain overnight and more secretions which make the doctors think of a general tracheitis but at this point it doesn't make much difference whether it is a mid-airway infection or lower airway infection. Over the day she has improved, complaining of less pain, less secretions, and generally feeling "better" though sometimes she would say "bad".<br />
<br />
It is possible she could be discharged late tomorrow afternoon but it depends on the microbiology report. It usually takes 48 hours but sometimes more, sometimes less. It depends on her general symptoms too.<br />
<br />
We have an appointment with the clinic on Tuesday to evaluate her readiness for the next stage of chemo called Delayed Intensification with a planned start on Friday. That means adding a nasty drug called doxyrubicin, restarting steroids (yay...), methotrexate, PEG-asperaginase, and vincristine WEEKLY for FOUR WEEKS. Am I anxious about this? Guess. Please be praying for her handling of those drugs. She has gotten at least one dose of each of those in the past but in some ways this stage is even harder to handle than the first stage of treatment. A lot of hydration fluids are required on multiple days to protect the kidneys, lots of labs to monitor, white blood cells hovering around zero, and possible red blood cell or platelet transfusions. Not to mention the pain and nerve damage from the vincristine. This will be the second time she is scheduled for so much vincristine in so little time and we know how that ended. Obviously, she has a trach tube in place so, theoretically, her airway is "stable" but there has literally never been a case like Shoshana related to vincristine.<br />
<br />
In my research I've learned that there are only six other known cases of survived vincristine toxicity, one of which was a girl. Only one of them (a boy) needed a trach for a short time after extubation. None of them had the pain and nerve side effects Shoshana is experiencing. One of the reassuring things about leukemia treatment is that because it is so common and has been around for so long we have a lot of data to help us decide how to treat her. Unfortunately, all that data only goes so far.<br />
<br />
Please pray for us. For sleep. For peace. For pain relief. For protection from drug side effects.<br />
<br />
Thank you.<br />
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Playing with medical supplies</div>
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Eating more! </div>
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Making faces :) </div>
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<br />Linguisticnursehttp://www.blogger.com/profile/02034864622410548219noreply@blogger.com1tag:blogger.com,1999:blog-2131549230583424790.post-11722957305232224242013-02-27T17:19:00.000-08:002014-04-28T15:56:15.814-07:00C-Diff, Methotrexate, and PneumoniaThe title pretty much sums up the last two weeks here. Two weeks ago Shoshana started vomiting not very often, but a large amount each time. After a day and a half of this I knew she was getting dehydrated so we brought her in to the clinic for fluid bolus and evaluation. After the first fluid bolus, still no urine. So they ordered a second bolus. Well after the second fluid bolus she finally wet her diaper but not with much. The doc hemmed and hawed about whether to keep her or send her home and Shoshana finally did it: she performed in clinic! She threw up 650ml which was everything fed into her stomach since the last vomit. The nurse and I pointed out that that is how much she was regularly throwing up because, apparently, when we say "a lot" it doesn't translate into anything important until you measure it and get something ginormous like "around 600mls." The doc heard how much emesis was measured, lifted his eyebrows, and decided to keep her. Even though I was on the fence at that point I was relieved that we wouldn't be going home with an ongoing hydration problem without any answers as to why.<br />
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The next few days were a rotating trial of gut rest, slow gut trial, throwing everything back up, rinse, repeat. Finally, some watery diarrhea prompted a stool test and <i>Clostridium difficile</i> was diagnosed. It is likely the natural gut bug was allowed to grow out of control because of an earlier round of antibiotics combined with her low immune system. Once out of control it is also highly contagious and easily tips the internal balance for other patients in the healthcare setting. It was around seven days after her first symptoms that she finally started to have a little net gain through her stomach. As soon as that happened we agreed to start her fourth round of high dose Methotrexate etc. which is the last one for this phase of treatment. Her gut continued to progress and she stopped dropping weight.<br />
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Then the respiratory secretions got bad. Her pain exploded, vital signs started changing, she was cranky, her lungs didn't sound right (though they have sounded poorly in the past for various reasons) but every test we did was basically negative. Some minor signs of infection were seen under microscope from her trach secretions but not nearly enough to explain her symptoms. There was only one thing left to try before requesting transfer to the ICU. She got scoped by ENT and, lo and behold, he saw pus in her right bronchus! Hallelujah, we have a diagnosis! Apparently there is an urban legend among doctors that it is possible to diagnose pneumonia before it is visible on a chest X-ray. Well, there you go medical researchers! It is possible. And I expect to be notified in the near future of yet another case study.<br />
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But this all goes to confirm her previous patterns of having severe symptoms before something can even be diagnosed. She sure keeps us on our toes! Sometimes I sigh and wonder why she has to be so special. Can't she just be "standard" for something? That would make everyone's job easier and would probably mean a faster and easier recovery from this damn cancer.<br />
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Oh, and we're not even done. The day before Shoshana came home Abi was a little extra cranky and I had a sore throat. The next day we both spiked fevers and wanted to do nothing but lay down and sleep. And the pain. OH THE PAIIIIN. I hate the flu I hate the flu I hate the flu. This is the fourth time I have ever had the flu. The first time was at the age of 22, two months after getting my first ever flu shot because it was a job requirement. Since then I've been forced to get a second flu shot (again a job requirement), again got the flu a month later, but this year I've had it twice without a preceding flu shot. I've worked in healthcare that whole time and traveled three continents before age 22. I don't think it's a coincidence. But that is a blog for a different time.<br />
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Shoshana has been home for two days and doing well. Abi is so giggly now that her sister is around and so interested in everything Shoshana does that she is rather annoying. I hope they can both learn some social norms through this. Abi, Shoshana needs space. Shoshana, Abi is so happy to see you!<br />
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We haven't taken many pictures recently so here are only two:<br />
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Still pretty wiped out but enjoying her new shipment of hats. </div>
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Beginning to feel better. Yes, she has lost weight. 2.5 kilos.</div>
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Please also keep our friends Rachel, Merle and their two boys Benton and Wilson in your prayers. Last I heard they were still stuck at Children's trying to manage Benton's pain without overdosing him. Mostly they just want to go home and be in a familiar environment during the coming transition. My heart breaks for them.</div>
Linguisticnursehttp://www.blogger.com/profile/02034864622410548219noreply@blogger.com0tag:blogger.com,1999:blog-2131549230583424790.post-31944347248060772492013-02-01T17:18:00.001-08:002013-02-04T15:04:26.877-08:00Pain and other things<div class="separator" style="clear: both; text-align: left;">
We had a follow up appointment and lab draw today to see if Shoshana's white blood cell counts were high enough to hit her with more chemo or not. Finally! We can begin her third round of inpatient heavy duty Methotrexate infusion. Since she has been taking longer and longer to "recover" from those treatments they are going to decrease her dose to 80% based on how sensitive she is to all the other chemos as well. It makes sense that she would be sensitive to more than one. </div>
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Speaking of sensitivity, she is currently on a 30% dose of Vincristine in an attempt to reduce the neuropathic pain side effect but we're not seeing a significant improvement since dropping the dose from 50%. We saw the pain team yesterday and the decision was to increase the Gabapentin beyond the recommended maximum dose since she isn't showing signs of side effects of that drug yet. After this next dose of Vincristine we will have a more in depth conversation on whether to stop the drug altogether (which would greatly increase her chances of relapse) or figure that she is one of those rare people who have severe side effects with any Vincristine whatsoever and give her a higher dose while focusing harder on managing her pain.</div>
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The pain side effect has become such an issue that we once again brought Shoshana to the ER last weekend simply because her pain was out of control and there was nothing more we could give her at home. That was while on two narcotics known as Methadone and Dilaudid as well as Gabapentin which is technically an antieleptic but is the mainstay drug for neuropathy. Besides the glottic stenosis, glottic edema, and tracheostomy, the pain itself is considered a severe side effect. Sometimes she wakes in the middle of the night with severe pain, sometimes, like this morning, she is simply grumpy for a while before admitting she has pain. The goal is that she wouldn't need Dilauded more than 4 times a week. At this point we're<span style="font-family: inherit;"> at 7-8. Unfortunately, since she is already on a pretty intense pain management regimen any increases to her pain medication will need to be really slow unless she is inpatient where they can monitor her very closely.</span></div>
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<span style="font-family: inherit;">Please also pray for a former roommate and his family. They just finished a set of full body scans this week ater their last ditch effort to stop the spread of his rare neuroblastoma. Unfortunately, the scans show cancer all over his body. The mom says they are going home for the weekend and having fun before making any more decisions about his care. They are believers with two sons and they live in Yakima. I cried and gave her a hug through she didn't cry with me. She says that she is still numb from the news last night and hasn't cried about it yet. My heart is breaking for them. She is such a sweetheart and we have a lot in common. Our kids were going through a lot of the same struggles when we met and I was encouraged by her several times. Please pray with me for them.</span></div>
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<span style="font-family: inherit;">On a lighter note, here are some pictures of what Shoshana has been busy with recently:</span></div>
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Lunch with a different former roommate (second from the right). She met their new puppy afterward.</div>
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Playing with Abi and daddy. I love Abi's expression in this picture. They sure have the best daddy in the world!</div>
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At the entrance to the Seattle Children's Museum. She had a great time.</div>
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Linguisticnursehttp://www.blogger.com/profile/02034864622410548219noreply@blogger.com0tag:blogger.com,1999:blog-2131549230583424790.post-21357735554252292372013-01-26T14:36:00.001-08:002013-02-04T15:05:09.797-08:00Normal-ish-nessOh, wow, it's been a month since I updated here last! <br />
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It's been so nice to have Shoshana at home. We have had several all-day clinic appointments, a short (scheduled!) hospital stay, and a few trips to the emergency room, but compared to the last few months, it was downright normal and relaxing. We even made it to church together a few times.<br />
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We have home nursing care at night, and during the day most days (except Sundays and every other Saturday). This enables Elizabeth and I to sleep at night (in the same bed!). It's been great to have the girls together. They love to be with each other, and Abigail especially misses Shoshana being in her room at night when she's gone. Abigail is walking now.<br />
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Shoshana's neuropathy pain is still an issue, even on the lower doses of vincristine. Over the past two weeks or so, it has been getting worse. Last night, after a clinic appointment in the morning, and a lumbar puncture in the afternoon (with a trip to the Children's Museum in between--her first trip to anywhere but the hospital or church since diagnosis!), she woke up from her evening nap in extreme pain, and spiked a fever. Liz and I brought her in to the emergency room. They are increasing her pain meds (again), and she seems to be doing okay this afternoon. <br />
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She is due to be admitted to the hospital for another round of IV chemo anyway, and would have been earlier this week, but her blood counts were not high enough to start the chemo. Her blood counts are high enough today, but with all that's going on, they want to see her sustain that for another day before staring the round. If not, we will have to go home, come in to the clinic on Monday, and then be admitted on Tuesday. Bouncing back and forth between home and the hospital is no fun for anyone.<br />
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Specific items for prayer:<br />
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<li>That Shoshana's neuropathy pain will resolve quickly. </li>
<li>That the hospital stay and IV chemo will go smoothly.</li>
<li>That Shoshana will remain in remission from cancer. Forever.</li>
<li>Please continue to pray for our family: nuclear, extended, and our much bigger family of supportive friends. I praise the Lord for all He provides!</li>
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I know you all just visit this blog for the pictures, so here you go:<br />
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<br />burndivehttp://www.blogger.com/profile/05133129688998029494noreply@blogger.com1tag:blogger.com,1999:blog-2131549230583424790.post-51428777439569130082012-12-26T23:59:00.000-08:002012-12-27T00:00:07.733-08:00Remission!Shoshana is officially in remission! Praise the Lord. We are not out of the woods yet, but this is very good news.<br />
<br />
She had a bone marrow test, and they were not able to find any leukemia blasts in the sample. Leukemia is probably still hiding away somewhere in her body, however, and she has a long road of at least two years of chemotherapy ahead of her, to ensure that all of it gets killed. In other words, now that the cancer is down, it's time to kick it in the face: over and over, for a long time.<br />
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Nevertheless, unless she goes into relapse, the worst of the treatment is behind us.<br />
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Praise the Lord again! Shoshana was able to stay home for Christmas. She was in the hospital for a round of intense chemo, came home December 20th, and is scheduled to be admitted again for another similar round on Monday, December 31st. This cycle will repeat itself a total of four times, before moving along to the next phase of chemotherapy.<br />
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<br />
Specific items for prayer:<br />
<ul>
<li>Praise for answered prayer! Shoshana is in remission, and had a very merry Christmas together at home with her family.</li>
<li>That Shoshana's leukemia will not stage a comeback; that it will be truly wiped out.</li>
<li>As she continues treatment, that she will be able to tolerate the effects of the drugs she is taking, and that they will not cause further damage. </li>
</ul>
While Shoshana is at home with us, we have been provided with nursing care for 16 hours a day. This means that Elizabeth and I can sleep during the night, without getting up to administer medication, or if equipment is alarming, or she throws up. It also enables us to care for Shoshana's trach and medications as well as her and Abigail.<br />
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Shoshana is still able to swallow only very small amounts of (soft) food, and can only drink thickened liquids, in small amounts. We continue to give her the home-made formula, as well as pumped milk from Elizabeth.<br />
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<br />burndivehttp://www.blogger.com/profile/05133129688998029494noreply@blogger.com2tag:blogger.com,1999:blog-2131549230583424790.post-89368120172102926652012-12-10T00:02:00.001-08:002013-02-04T15:06:30.742-08:00A Brief HomecomingIt's been over month with the trach.<br />
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Elizabeth, Kristen, and I had to have 10 hours of training on how to care for Shoshana's tracheostomy, both for regular maintenance and cleanings, and for emergency situations. The most common thing we do is suction mucus out of the trach (otherwise it will get gunky and clogged). We do this whenever Shoshana is gurgly, which happens a lot in the mornings, but also at any and every other time, especially if she gets upset, or if she is coughing (or especially if she's vomiting). We also clean her trach stoma and change her dressing once or twice a day, and hook her up to monitoring equipment while she's asleep.<br />
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<b>Formula</b><br />
Shoshana had been put on formula feeds in the hospital since before her trach because she hadn't been eating. The pain in her throat made it difficult to swallow, and her swallow wasn't good enough to keep some foods and liquids out of her wind pipe, so she could only eat certain consistencies of foods and specially thickened liquids.<br />
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Kristen had been reading a book called <a href="http://amzn.to/SRGZgB">The China Study</a>, which brings to light some research about the association between amount of animal protein in your diet and the growth of cancer cells, especially the type of casein (a protein) that is very high in cow's milk. The formula Shoshana was getting in the hospital was milk-based, so we asked about other options. We could go with a soy-based formula, but we weren't too thrilled with that, and it would be mostly GMO, so we instead opted for a home-made vegan recipe created by the hospital nutritionist. It's made from hemp milk, pea protein powder, oatmeal, spinach, banana, sweet potatoes, almond butter, apple sauce, flax oil, and avocado, all of which are real actual food.<br />
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Because of Shoshana's sensitivity to bacterial infection while on chemo, we have to make it fresh daily, and bring it to the hospital on ice. In order to get it fine enough so that it doesn't clog the feeding machine or her N-G tube, we bought a Vitamix blender (and borrowed one from a friend until our unit arrived).<br />
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It actually tastes quite good. When there are leftovers (she can't have it if it's over 24 hours old), we bring it home and drink it ourselves. We mix it 50/50 with goat's milk for Abigail (or give it to her straight in a sippy cup, and she devours the stuff.<br />
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As soon as we put Shoshana on it, her diarrhea resolved, and her energy returned. As soon as we put Abigail on it, her constipation resolved. Perfect miracle food? Quite possibly.<br />
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<b>Vincristine</b><br />
Vincristine is the chemo drug which caused Shoshana's vocal cord problems, making the trach necessary. She has also suffered other nerve damage. She has also suffered quite a bit of peripheral nerve damage, resulting in lack of reflexes and coordination, especially in her feet and legs. Peripheral nerve damage is normal for patients taking vincristine, and Shoshana got an extra generous helping of the normal side effects, plus a few unique to her.<br />
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Elizabeth has done a lot of research on vincristine, in order to make sure that it is indeed necessary for Shoshana's treatment (and I have read several of the studies that she turned up), and to look into other cases of unusual side-effects. Despite what it does to Shoshana, we are convinced that it is an essential part of her Leukemia treatment. Based on how it effects her, the protocol dictates that she be given half doses, instead of full strength. Different people metabolize drugs differently, and it may be that it hangs around in Shoshana's body longer than in other people. The hope is that with half doses her side effects will be manageable, while still getting the cancer-killing benefit from the drug.<br />
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<b>Home</b><br />
Shoshana was able to come home on Wednesday! ...for three days. On Saturday, her trach discharge was increased, and her skin was reddish near the stoma. In the evening, she spiked a fever, and we took her in to the hospital. By the time that we got to the emergency room, her fever had gone down, but they trust the home temperature. She was admitted to the hospital, and they took some samples. She was negative for anything viral, and they had started her on antibiotics right away. In the morning, her stoma was red and swollen--clearly infected. Once they narrow down what kind of bacteria it is, they will switch her to a more targeted antibiotic. Meanwhile, she will be in the hospital for a few days at least until it resolves.<br />
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When we have her at home, we have home nursing care to help with Shoshana, which is definitely a blessing. We were going through the process of familiarizing the nurses that will care for her with Shoshana's needs when her stay at home was interrupted.<br />
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<b>Chemo Cycle</b><br />
Shoshana is almost at the end of the Consolidation phase of her chemo. At the end of this phase, they will do a bone marrow biopsy and see how many (if any) leukemia cells they detect. (Even if they detect none, she still needs to continue the treatment, since leukemia has a habit of hiding away, and then coming back. This is why the treatment is long-term.)<br />
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She will need to be admitted to the hospital for the beginning of the next phase, since it packs a particularly potent punch. If there are no delays, however, she should be able to be home for Christmas. Please pray that that is the case.<br />
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<b>Specific items for prayer:</b><br />
<ul>
<li>Shoshana's cancer treatment - that it would be effective, and that the side-effects would not be damaging. That she would be healthy and strong during her treatment, and not get any more infections.</li>
<li>That Shoshana would be able to be at home as much as possible. It is definitely a strain on our family to be living in two places at once. All of us, especially Abigail, enjoyed having her at home very much. It would be nice to have Christmas with Shoshana at home.</li>
<li>Continued strength for our family as we manage her care: for Elizabeth, Kristen, and me especially, but also for Abigail. Please pray that we would be able to remain healthy, and be given grace to deal with the strain on our minds, bodies, and spirits.</li>
</ul>
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<br />burndivehttp://www.blogger.com/profile/05133129688998029494noreply@blogger.com1tag:blogger.com,1999:blog-2131549230583424790.post-62483137200740334522012-11-10T12:55:00.001-08:002013-02-04T15:03:55.533-08:00Tracheostomy<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/AVvXsEi97z6SS4aFlnkY13t9jtbK8ONLvLqvqNWURIob3B3DfU6GTeLTQMEji_OWgdilRFm8zyhFVI4lC_6g_KH-D8Kg00bTxkGiifKv8YkfHMw5LjFXPtM3-q1VMXnKzJeB-2IqaU3AQYngzItl/s1600/20121028_150344.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi97z6SS4aFlnkY13t9jtbK8ONLvLqvqNWURIob3B3DfU6GTeLTQMEji_OWgdilRFm8zyhFVI4lC_6g_KH-D8Kg00bTxkGiifKv8YkfHMw5LjFXPtM3-q1VMXnKzJeB-2IqaU3AQYngzItl/s1600/20121028_150344.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mommy, Abigail, and Shoshana</td></tr>
</tbody></table>
Shoshana had to wait several more days, but finally an ICU bed was available for her, and her tracheostomy procedure went forward. The procedure was successful, and the only surprise was the discovery that, though her vocal cords seem to have recovered significantly, there was unexplained swelling and scar tissue just beneath them. <br />
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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/AVvXsEjQH0KUZ_ruW2UIBh7h2am9FfnY_INVqu_sXNYJjXYau2UPIJzDdQlm2nJErk3CmH3ghUoPcQ-NY9iXEYhiqc-CftajYFkNKtHJjoTn1cuHYSGgtVTvK7A9u8k0ulB5Ma_Cwg3rr8JjXaxz/s1600/20121028_155130.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQH0KUZ_ruW2UIBh7h2am9FfnY_INVqu_sXNYJjXYau2UPIJzDdQlm2nJErk3CmH3ghUoPcQ-NY9iXEYhiqc-CftajYFkNKtHJjoTn1cuHYSGgtVTvK7A9u8k0ulB5Ma_Cwg3rr8JjXaxz/s1600/20121028_155130.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sisters playing</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5pv3mk5M3Ru8LFNRPlnpwnuwNBIm5Awl2-1t_ugPMErKvPMoCcGQljOZvGNu2HQ2ZvP8i8iyrSTHqWbkdqerGfHkhdlXhyUtVouVBMXvnG8_wJ8bXw3WpdMwHegRC9qaWcpOY9Wb9v6nW/s1600/20121028_155147.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5pv3mk5M3Ru8LFNRPlnpwnuwNBIm5Awl2-1t_ugPMErKvPMoCcGQljOZvGNu2HQ2ZvP8i8iyrSTHqWbkdqerGfHkhdlXhyUtVouVBMXvnG8_wJ8bXw3WpdMwHegRC9qaWcpOY9Wb9v6nW/s1600/20121028_155147.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She likes to hug her sister</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc7rq3uqmjcpZ8JyxgjZlRAnk9HEr9k-KOWKmCqh2Tx4RnVlTi-OOjEu_WmK677OO1tgmE3LZU1hAlHn8_Cc7kNYSdZdXv9j-w9fk4ZNPa2DH1zv3r2bjpMWiNmtGRJYalo7h6m2g1p9pV/s1600/20121031_193742.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhc7rq3uqmjcpZ8JyxgjZlRAnk9HEr9k-KOWKmCqh2Tx4RnVlTi-OOjEu_WmK677OO1tgmE3LZU1hAlHn8_Cc7kNYSdZdXv9j-w9fk4ZNPa2DH1zv3r2bjpMWiNmtGRJYalo7h6m2g1p9pV/s1600/20121031_193742.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Roughhousing (before the trach)</td></tr>
</tbody></table>
In the days leading up to the procedure, Shoshana's appetite disappeared almost completely, and she started throwing up quite a bit. She would want to eat, and hold food in her hand, but never take a bite. The nausea is still unexplained, but it may be due to an infection or irritation in her throat. She is still not eating anything, though very occasionally she will ask for food. If she were actively on chemo, it might account for the nausea, but she is not.<br />
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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/AVvXsEg0hBJ0RmUtWCYMuk_cUW2PjKu9GUgGHPF8BWcp_y4djQ8jtyk1UCHNuo-lSrNQsa2qdp3GbQyvZ0aVuche5JircQxL9NI6ymhGNFYTcJZ_MAgYMscLOKZqWWdkwHQzI_9nK0ZRV-R0pcHI/s1600/20121102_201740.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0hBJ0RmUtWCYMuk_cUW2PjKu9GUgGHPF8BWcp_y4djQ8jtyk1UCHNuo-lSrNQsa2qdp3GbQyvZ0aVuche5JircQxL9NI6ymhGNFYTcJZ_MAgYMscLOKZqWWdkwHQzI_9nK0ZRV-R0pcHI/s1600/20121102_201740.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Showing Abigail the new trach</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB1L7mrliNC3jHpuviUWgBqEahzJuEShKbKlRv9oFHCVnViFtYGIpZAsWxUtSiPwwLDcM3_KNnY9iLTsx22YgbwXKE5zGfWMj0GeoEIm7Fitt8j610rdBmmDftRmXA0keOFSR2FPtreim7/s1600/20121102_213508.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB1L7mrliNC3jHpuviUWgBqEahzJuEShKbKlRv9oFHCVnViFtYGIpZAsWxUtSiPwwLDcM3_KNnY9iLTsx22YgbwXKE5zGfWMj0GeoEIm7Fitt8j610rdBmmDftRmXA0keOFSR2FPtreim7/s1600/20121102_213508.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Abigail helping me move Shoshana's things to the ICU</td></tr>
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Shoshana was moved out of the ICU onto a medical floor, where she is able to move around quite a bit more. Her leg muscles have deteriorated again to the point where she can barely stand, and cannot walk. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3-ctVUdYwlYP8ldrJQ5YfVWEbVD9XWM3WdzQqRKvvpGiyP_U6p4s-q_wmj03FAkyxNrHU9uZEiOuYAiVTIx1obXLmt1ebk_r6Kcf2rCwUiOpwiX63DED9_9N-YkSFH6e01XJQaCJYlfP1/s1600/20121107_204927.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3-ctVUdYwlYP8ldrJQ5YfVWEbVD9XWM3WdzQqRKvvpGiyP_U6p4s-q_wmj03FAkyxNrHU9uZEiOuYAiVTIx1obXLmt1ebk_r6Kcf2rCwUiOpwiX63DED9_9N-YkSFH6e01XJQaCJYlfP1/s1600/20121107_204927.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snuggle time with Mommy</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbgpseEv_-0hGOsvwnKbZusMa55Cmhbq6nwvMlIAUEeM5Hh3xZOwbB9RL44vKIAOi6nr_uKeP2VEEsVt9NMDsIC037fRNjHtlNoQkKTJ4ZO26Gi_tcUYgi4hsRGzkP_TmpFW3XY2wHG_I3/s1600/20121107_205054.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbgpseEv_-0hGOsvwnKbZusMa55Cmhbq6nwvMlIAUEeM5Hh3xZOwbB9RL44vKIAOi6nr_uKeP2VEEsVt9NMDsIC037fRNjHtlNoQkKTJ4ZO26Gi_tcUYgi4hsRGzkP_TmpFW3XY2wHG_I3/s1600/20121107_205054.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing on Mommy's phone</td></tr>
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She is due to start chemo again this Monday or Tuesday. They are going to change her from a targeted antibiotic to a more broad spectrum one, in hopes that that will clear up whatever has been irritating her throat and causing her to spit up all of the time.<br />
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She has been on various different combinations of anti-nausea medications, but so far, nothing seems to help very much.<br />
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We have had a couple of consultations with <a href="http://www.nwnaturalhealth.com/cancer.html">Northwest Natural Health</a> regarding Shoshana's care. They have given us a few good ideas to improve her care, as well as serving as an expert eye when it comes to interactions between chemo medications and other supplements (or, in our case, antioxidant-rich fruit and veggie juices). <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia07r4jCbSCk0c22WQgvx0tl9pAoW0aPH7hmWyzn86ZxwXb29nWwGMfSQPsQDUQL3U3wf89bu9SRhaEuHasIq5JvM5oMU3VNkUHXQQSkyznBQdG7Q6gthWC5MEDOfCLV66d8BQkWmJFTPe/s1600/20121109_185958.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia07r4jCbSCk0c22WQgvx0tl9pAoW0aPH7hmWyzn86ZxwXb29nWwGMfSQPsQDUQL3U3wf89bu9SRhaEuHasIq5JvM5oMU3VNkUHXQQSkyznBQdG7Q6gthWC5MEDOfCLV66d8BQkWmJFTPe/s1600/20121109_185958.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daddy is here for the weekend</td></tr>
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Shoshana has struck up a particular rapport with the older sister of one of our previous roommates, also named Abigail. She paid her a visit last night.<br />
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<tr><td style="text-align: center;"><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvLO01eqRLHTr3Ujs9Gz69yKldRgk65yAvZOLT5YG_VZusOzczbyzy4nMReUFR2l1E8bVXwGyd2nYHZ66lWL_xHK9Ogv7PgTfFPRtY6uekcyfogP5HpG8a1sJy9fzVckjbyalPIzG4p9tK/s1600/20121110_111107.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvLO01eqRLHTr3Ujs9Gz69yKldRgk65yAvZOLT5YG_VZusOzczbyzy4nMReUFR2l1E8bVXwGyd2nYHZ66lWL_xHK9Ogv7PgTfFPRtY6uekcyfogP5HpG8a1sJy9fzVckjbyalPIzG4p9tK/s1600/20121110_111107.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Painting</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaqqy37qX6hPqtmmMp9O0GM9SYCgCvQXeb37SKGZXDTtmHcKwBNzn2PmiZNv1sokbMA3aOmVaGN2qiyvD7VAmfZH5OdHuy4QVT2xu_dR3OL5gxVtoKPiN3kbwZhJ9PREUSVmH3Bco7bses/s1600/20121110_112518.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaqqy37qX6hPqtmmMp9O0GM9SYCgCvQXeb37SKGZXDTtmHcKwBNzn2PmiZNv1sokbMA3aOmVaGN2qiyvD7VAmfZH5OdHuy4QVT2xu_dR3OL5gxVtoKPiN3kbwZhJ9PREUSVmH3Bco7bses/s1600/20121110_112518.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bubbles</td></tr>
</tbody></table>
Please continue to be praying:<br />
<ul>
<li>For Shoshana's leukemia, that it would be effectively treated, and go away, never to return. That she would recover fully and completely.</li>
<li>For Shoshana, as she deals with the nausea, recovers from her deteriorated muscles, and not being able to speak very much or very clearly with the tracheostomy. She is currently able to speak short phrases out loud if she pushes hard past her trach. Other than that, we have been lip reading, and she has learned a few signs.</li>
<li>For Elizabeth, Kristen, and me, as we care for her and Abigail, and attempt to also care for ourselves and each other.</li>
</ul>
We are so thankful for those who have been giving us meals, and volunteering to care for Abigail when the three of us can't, or to enable Elizabeth and me to go out on a date while Kristen is at the hospital with Shoshana. burndivehttp://www.blogger.com/profile/05133129688998029494noreply@blogger.com0tag:blogger.com,1999:blog-2131549230583424790.post-74796578481732655382012-10-27T19:49:00.000-07:002013-02-04T15:03:23.904-08:00Holding PatternIn the past two weeks or so since <a href="http://www.burndive.com/2012/10/shoshana-intensive-care.html">I last posted</a> an update, a lot has gone on, but not a whole lot has changed. We seem to be in a sort of limbo. Shoshana's airway is stable enough that she was moved out of the ICU onto the regular floor, but still too unstable to consider going home.<br />
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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/AVvXsEgX29puWiTkCtoAWaFDAhrmmDRleb2EhEfB24S_DtpmwK8XNMCpGI-DqKrc_PJBoWqOOFQin241tIdezZY5Fz2DWZqBLZT1HHigOd4aQyQnSAlyb9-hWBO0fdC04gnXU4p0LJp0SSMHnbAu/s1600/20121012_125415.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX29puWiTkCtoAWaFDAhrmmDRleb2EhEfB24S_DtpmwK8XNMCpGI-DqKrc_PJBoWqOOFQin241tIdezZY5Fz2DWZqBLZT1HHigOd4aQyQnSAlyb9-hWBO0fdC04gnXU4p0LJp0SSMHnbAu/s1600/20121012_125415.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Shoshana and Daddy</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
Her pain situation seems relatively well managed and stable, but this round of chemo, she has been throwing up a lot and not interested in eating or drinking enough fluids to keep herself nurtured and hydrated.<br />
<br />
Before she moved out of the ICU, they were going to give her a tracheostomy because her vocal cords were still not moving. In preparation, they did a bronchial scope, and saw her vocal cords moving well enough that they called it off.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiutwm7c6-GFFFbwtNkuAmOsV3YSB7tyVsGEvkInrRXsDkjFAfd1nvcujhSy30gJ8dF3bZ8abfDWiwBDzMDXgMUENtWJ9wjWHXIey1v5bJtedErjo7dd-A6nDeMJXZD1Z3bdYHsHR_JcU2R/s1600/20121012_132457.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiutwm7c6-GFFFbwtNkuAmOsV3YSB7tyVsGEvkInrRXsDkjFAfd1nvcujhSy30gJ8dF3bZ8abfDWiwBDzMDXgMUENtWJ9wjWHXIey1v5bJtedErjo7dd-A6nDeMJXZD1Z3bdYHsHR_JcU2R/s1600/20121012_132457.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Taking the blood pressure of the medical play bear.</td></tr>
</tbody></table>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO7rbTqHYugR4sGCBwrhi4WJNhM8mwxyrdtN_6b4w92gaqtquXPCWmm4FkePLL1PBScxqCyvf0nZKCSWorL3lTmLJf8gOmWv_nFVVppYyED3i0rBKZPVAS6BCaZhOscdDxQs-SYl-7s_SA/s1600/20121012_193016.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO7rbTqHYugR4sGCBwrhi4WJNhM8mwxyrdtN_6b4w92gaqtquXPCWmm4FkePLL1PBScxqCyvf0nZKCSWorL3lTmLJf8gOmWv_nFVVppYyED3i0rBKZPVAS6BCaZhOscdDxQs-SYl-7s_SA/s1600/20121012_193016.jpg" width="320" /></a></div>
<br />
Later under anesthesia, they did a scope further down, and observed swelling just below the vocal cords. Swelling that has no explanation, and is constricting her airway such that her need for the BiPAP while asleep has not diminished.<br />
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The new plan is the old plan: tracheostomy, scheduled for Monday at 4:00 PM. They will of course do a scope immediately before the operation, and if the swelling has gone down significantly, they may call it off again. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuiL89pm4Br9h_cljm-eiILVK861nbC7TtcftzyKtdZpQclLUxdXDECEDoeUzMXpu8RLfhGmc81HguU2fyHcQ9IPHPREytF6gQiN1ydIix1joYr-nGcabvxCpaGcekNDrtxIRpTqBKH59c/s1600/20121013_095027.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuiL89pm4Br9h_cljm-eiILVK861nbC7TtcftzyKtdZpQclLUxdXDECEDoeUzMXpu8RLfhGmc81HguU2fyHcQ9IPHPREytF6gQiN1ydIix1joYr-nGcabvxCpaGcekNDrtxIRpTqBKH59c/s1600/20121013_095027.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing with her doctor and nurse toys.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihhjYzyM3k2_HI604dkHEq7t6yfc6EjTOFELLtUjRZaxLBIqkXWOUi2Ec5qzS_jF6P_meDm9CTniwUWvpFDHHmIuJ6EV8Uvi5ceeOXyhGzlTSDlId_fTar44eUswJaj49bIT83P_kCfh-e/s1600/20121013_105852.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihhjYzyM3k2_HI604dkHEq7t6yfc6EjTOFELLtUjRZaxLBIqkXWOUi2Ec5qzS_jF6P_meDm9CTniwUWvpFDHHmIuJ6EV8Uvi5ceeOXyhGzlTSDlId_fTar44eUswJaj49bIT83P_kCfh-e/s1600/20121013_105852.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Standing up. Shoshana is still very weak, and has peripheral nerve damage in her feet and legs.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim3ThAmmAr5m9hXjZITNZ2DsWV6R2amJN8BrWx36ci9GcQs6cYMp064tnuBYGYSzxT8gbJ18ajFwOoAKdJgxdqASWPHFFIN68uw6RVELjYPp7-einYAs1ofqNLw2N0E2-t_VfLXIa7FYTN/s1600/20121013_111208.jpg" style="margin-left: 1em; margin-right: 1em;"></a></div>
Here is what is currently keeping Shoshana inpatient at the hospital:<br />
<ul>
<li>Obstructed airway - She needs a BiPAP while asleep to prevent stridor. She has been fine breathing on her own during the day with the exception of her nap time.</li>
<li>Pain management - currently by IV drugs, which we could not administer at home, so she would need to be switched to oral medication.</li>
<li>Compromised immune system due to low blood counts - this is due to where she is in her cycle of chemotherapy, and is expected to improve soon. She is getting medication to increase her healthy white blood cell count in anticipation of the tracheostomy procedure.</li>
<li>Feed and fluids - Currently, Shoshana has very little appetite, is prone to nausea, and has trouble swallowing foods that are too solid or too liquid. She is still on thickened liquids as well. She is receiving formula through her feeding tube for nutrition and hydration, supplemented by IV fluids.</li>
</ul>
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<tr><td class="tr-caption" style="text-align: center;">Music room!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJXrG5gGQpXqCulvbtgECpBm1N-pXrYz1t8JpsORYc8ImJrBlYzwth92pkM9MUMYx7ttevVsK-aOVEhnLW6aSIpVrz0iCDVMyBnoLcf_1waOdH4j_xrlmKQkeTJaDkOU9TX3feaGtgJG_e/s1600/20121013_124052.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJXrG5gGQpXqCulvbtgECpBm1N-pXrYz1t8JpsORYc8ImJrBlYzwth92pkM9MUMYx7ttevVsK-aOVEhnLW6aSIpVrz0iCDVMyBnoLcf_1waOdH4j_xrlmKQkeTJaDkOU9TX3feaGtgJG_e/s1600/20121013_124052.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Doing crafts.</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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A tracheostomy comes with its own set of complications, but it is expected to immediately give her relief from her airway obstruction, and prevent future nerve damage and swelling issues from causing problems getting oxygen to her brain (and everywhere else, for that matter).<br />
<br />
She will need to be in the ICU for at least a week after the procedure, and it will be weeks before going home will even be a possibility. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnnsEBrBfUs3IEM0pBoWa7jeQB-k7zC-AajHZI3hJQuTtpr27yTT_3wzFuEyuUh9-sp88DNtTGEeGm7QR5WzAD3iQpK3wBRZp2KoC7k4bWT_RUjYX2GLT6NWVXX3SF_pj9aHRjvPpMtKWN/s1600/20121014_161334.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnnsEBrBfUs3IEM0pBoWa7jeQB-k7zC-AajHZI3hJQuTtpr27yTT_3wzFuEyuUh9-sp88DNtTGEeGm7QR5WzAD3iQpK3wBRZp2KoC7k4bWT_RUjYX2GLT6NWVXX3SF_pj9aHRjvPpMtKWN/s1600/20121014_161334.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Taking a nap, on the BiPAP</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCcSogVGJzcwKFTFVdyTigFVD_uESevBQaIoIWGAKDCUyNPx02e45VbZ8bP49xQM5pB4mnTIlmM7QukyfnLJMNyLxfqsIgGcTD3YstrwVXGDpuyJOUsdW3nUvvB6wbVjdlsmgBpqcIHsiZ/s1600/20121015_192100.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCcSogVGJzcwKFTFVdyTigFVD_uESevBQaIoIWGAKDCUyNPx02e45VbZ8bP49xQM5pB4mnTIlmM7QukyfnLJMNyLxfqsIgGcTD3YstrwVXGDpuyJOUsdW3nUvvB6wbVjdlsmgBpqcIHsiZ/s1600/20121015_192100.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Climbing on the chairs, and discovering the mural.</td></tr>
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At the hospital, Shoshana has settled into a sort of daily routine. Breakfast in the morning, followed by bike riding and playing in the music room, and then arts and crafts-type activities until lunch. After lunch, play some more, and then nap for two to three hours on average. Dinner, another bike ride or so, and then down to bed. This is of course punctuated by visits from family and friends, as well as all of the interruptions that hospital life is made of. We have been reserving DVDs for when she needs distraction from pain or discomfort (or the occasional sanity break or snuggle time).<br />
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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/AVvXsEgyEva50wrGijj3Os4lwbd05qeUclLX80YJDIb1cS2AcBs6luwDaEr_beY552nlv0AzLGActbvwjbi2kBlD5ClZ_xBlmMZ8nbfynQ53czqDdvPWdC_7GRQgoTHLNXY9Vs-01FkZposO8y5Q/s1600/20121015_192335.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyEva50wrGijj3Os4lwbd05qeUclLX80YJDIb1cS2AcBs6luwDaEr_beY552nlv0AzLGActbvwjbi2kBlD5ClZ_xBlmMZ8nbfynQ53czqDdvPWdC_7GRQgoTHLNXY9Vs-01FkZposO8y5Q/s1600/20121015_192335.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Diving on the chairs.</td></tr>
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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/AVvXsEij1VJmwEimKxE6jrh0MxDIy4X0PWRfbjG0lXA4Mo4m4NDrteT32cHlK6zBr-nwszJTRDZtAVFDTQRVWFtbKyNShgqGz_vxBO8fNJFxbayXV5SjT24uueP6fMynOZOIxDpvHr2iJIBLq96y/s1600/20121015_203147.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij1VJmwEimKxE6jrh0MxDIy4X0PWRfbjG0lXA4Mo4m4NDrteT32cHlK6zBr-nwszJTRDZtAVFDTQRVWFtbKyNShgqGz_vxBO8fNJFxbayXV5SjT24uueP6fMynOZOIxDpvHr2iJIBLq96y/s1600/20121015_203147.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing with Uncle Loren's phone</td></tr>
</tbody></table>
Now that we're out of the ICU and back on the cancer floor, we have had a series of roommates (though as I type this, we are alone). Shoshana has thoroughly enjoying the interaction, though at times, we have had to temper her enthusiasm to let, for example, her 8-year-old roommate have some big-girl time with her friends, or keep her from bossing around other patients' family and friends. Shoshana is the epitome of precocious, and we are doing our best to teach her how, and encourage her to be polite and respectful to others.<br />
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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/AVvXsEg28s60sPsrRYrjA8pI7r_idy91m56sXIcYeANbcJz2oLH7uBRCxdv6bHR-xIxSI14hKii1WJjMW9F0kuOmjjEqJkGVw3Ay8NRevWuI0CmHyBbWB0cUxYFwPdKraLYHkRDLujsPWj42iYZB/s1600/20121021_184915.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg28s60sPsrRYrjA8pI7r_idy91m56sXIcYeANbcJz2oLH7uBRCxdv6bHR-xIxSI14hKii1WJjMW9F0kuOmjjEqJkGVw3Ay8NRevWuI0CmHyBbWB0cUxYFwPdKraLYHkRDLujsPWj42iYZB/s1600/20121021_184915.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Abigail and Daddy at home</td></tr>
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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/AVvXsEiL5UcJRRg3o4nr8KuhJfWEVqZj5SlLPx0g_cFlYhWR8W8wo7u1YkpP35yOwIW1moiIciFMdQR2vFV4Fx3wwElPW4f383Z-SXmyEFmGQpoCy99hW1VkptVc6rVUAILwAy9QvvZytORHCW-o/s1600/20121021_184925.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiL5UcJRRg3o4nr8KuhJfWEVqZj5SlLPx0g_cFlYhWR8W8wo7u1YkpP35yOwIW1moiIciFMdQR2vFV4Fx3wwElPW4f383Z-SXmyEFmGQpoCy99hW1VkptVc6rVUAILwAy9QvvZytORHCW-o/s1600/20121021_184925.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Abigail and Daddy at home</td></tr>
</tbody></table>
Please pray:<br />
<ul>
<li>Shoshana has had some unusual reactions to several drugs, and some unexplained symptoms. Please pray that this pattern would not continue, and that the drugs she is on would have the desired effects without difficult complications. Shoshana's current nausea is unusually late for her phase of chemo. Please pray that it will be effectively eliminated, in view of the impending tracheostomy.</li>
<li>Our family is under a lot of stress right now, not only because one of our members is suffering, but also because her hospitalization requires us to be apart most of the time. Please pray that she would be able to come home soon, and that the Lord's grace would be supplied liberally where there is strain. We thank the Lord for his provision of family and friends who are sacrificing in order to enable Elizabeth and me to spend more time together, and enabling Elizabeth to occasionally go to work (which helps her to stay sane).</li>
<li>I have run out of paid time away from work. Any days and hours I miss at work now cut into my paycheck. Please pray that our family, especially me, Elizabeth, and Kristen, will remain healthy and able to take care of our income, and our two girls. Please pray that I would be able to get ahead in hours, rather than scrambling (or simply not able) to make them up, when I am needed elsewhere.</li>
<li>For Shoshana's treatment, that it would be effective. Elizabeth and I are looking into complementary ways to help Shoshana's body be as strong and healthy as possible as she fights cancer. The battle belongs to the Lord, however. </li>
</ul>
<blockquote class="tr_bq">
<span class="chapter-3"><span class="text Ps-127-1">"Unless the <span class="small-caps" style="font-variant: small-caps;">Lord</span> builds the house,</span></span><br />
<span class="text Ps-127-1">They labor in vain who build it;</span><br />
<span class="text Ps-127-1">Unless the <span class="small-caps" style="font-variant: small-caps;">Lord</span> guards the city,</span><br />
<span class="text Ps-127-1">The watchman keeps awake in vain."</span> <br />
- Psalm 127:1 (NASB) </blockquote>
<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/AVvXsEiTx3gNa2yDN0Qbc1Nm3I2s1njXVnixh-0JNPw0rF3q5TBZlnmtWjEthvbelzq8uuH-MLIPzCZEM1-HMcRssU8qOtz9hsxlDDW2qFA6a81H8NyAN6tR5IkgkPaPpIqMpj3plqp4kUyt0SRL/s1600/20121024_200132.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTx3gNa2yDN0Qbc1Nm3I2s1njXVnixh-0JNPw0rF3q5TBZlnmtWjEthvbelzq8uuH-MLIPzCZEM1-HMcRssU8qOtz9hsxlDDW2qFA6a81H8NyAN6tR5IkgkPaPpIqMpj3plqp4kUyt0SRL/s1600/20121024_200132.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sisters!</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/AVvXsEg54LQSzenxlJAeo5Gvv9DI9FEv-KeW91Fqi9IzCHtnvlDipBQqSw2JqA59CV9xMf-mM41ysL9SRy3eY7cSfUTz-_wnZrcRQr-QpmmafWMQjqy57IoL2-upjL7q6wjqNGkG_k6OwSYr5VQX/s1600/20121024_200039.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg54LQSzenxlJAeo5Gvv9DI9FEv-KeW91Fqi9IzCHtnvlDipBQqSw2JqA59CV9xMf-mM41ysL9SRy3eY7cSfUTz-_wnZrcRQr-QpmmafWMQjqy57IoL2-upjL7q6wjqNGkG_k6OwSYr5VQX/s1600/20121024_200039.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sisters</td></tr>
</tbody></table>
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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/AVvXsEiZMMgPFzA_z2YArkXE0KGsNNo_VUfh6P2XycjMw5QD6NzxPJhBzPqF3PutHTJDVbwJUEv45uius-EHm9ou-qUxN3NrZvoNE2iZC4U-GdxuZD2G4AdbbdV60I6nrP6DCSIZXdhHqkhyphenhyphengMsn/s1600/20121024_202037.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZMMgPFzA_z2YArkXE0KGsNNo_VUfh6P2XycjMw5QD6NzxPJhBzPqF3PutHTJDVbwJUEv45uius-EHm9ou-qUxN3NrZvoNE2iZC4U-GdxuZD2G4AdbbdV60I6nrP6DCSIZXdhHqkhyphenhyphengMsn/s1600/20121024_202037.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Showing off her sparkly, flashing shoes, and her Rapunzel dress and crown</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/AVvXsEjVVsg6L5nciJGWln_nEtjVbWSpOu11cjRIlMjYSkwpWA-jmRs5-oBnvGxRZrb7afYrLpgUk1arr4hWGTEuaUF1v8f_LXUJ526wdt43KGQPTGYF_ppWoXM9rRunxx3Y72cDDkzNmyDo1Wqe/s1600/20121027_124840.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVVsg6L5nciJGWln_nEtjVbWSpOu11cjRIlMjYSkwpWA-jmRs5-oBnvGxRZrb7afYrLpgUk1arr4hWGTEuaUF1v8f_LXUJ526wdt43KGQPTGYF_ppWoXM9rRunxx3Y72cDDkzNmyDo1Wqe/s1600/20121027_124840.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Shoshana loves to make these. Daddy helped with the lettering on this one, at her direction.</td></tr>
</tbody></table>
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<br />burndivehttp://www.blogger.com/profile/05133129688998029494noreply@blogger.com2tag:blogger.com,1999:blog-2131549230583424790.post-70080496691379114602012-10-18T20:21:00.001-07:002012-10-19T12:43:19.623-07:00Shoshana's Leukemia Journey So FarWelcome. <br />
<br />
I created this blog so that our story with Shoshana and her Leukemia diagnosis could be told uninterrupted by other life events that will inevitably occur, and be discussed on my <a href="http://www.burndive.com/">main blog</a> (or my <a href="http://tuxbox.burndive.com/">more techy blog</a>), and also as a space to allow other authors, such as my wife Elizabeth, to write posts from time to time.<br />
<br />
Here are the previous blog entries that I have posted on my other blog:<br />
<ul>
<li>[8/16/2012] <a href="http://www.burndive.com/2012/08/shoshana-leukemia-thus-far-and-ahead.html">Shoshana: Leukemia Thus Far, and Ahead</a></li>
<li>[8/22/2012] <a href="http://www.burndive.com/2012/08/shoshana-outpatient.html">Shoshana: Outpatient</a></li>
<li>[9/1/2012] <a href="http://www.burndive.com/2012/09/shoshana-induction-chemotherapy.html">Shoshana: Induction Chemotherapy</a></li>
<li>[9/10/2012] <a href="http://www.burndive.com/2012/09/still-waters.html">Still Waters</a></li>
<li>[9/22/2012] <a href="http://www.burndive.com/2012/09/shoshana-respiratory-failure.html">Shoshana: Respiratory Failure</a></li>
<li>[10/11/2012] <a href="http://www.burndive.com/2012/10/shoshana-intensive-care.html">Shoshana: Intensive Care</a></li>
</ul>
There is also a post I wrote to introduce this blog: <a href="http://www.burndive.com/2012/10/shoshana-new-blog.html">Shoshana: New Blog</a> <br />
<ul>
</ul>
As you can see, I've been posting a comprehensive summary every two weeks or so, as best I can. I intend to continue to do that, as well as fill in the gaps with shorter content. I may occasionally link from here to posts on other blogs, or content on other social networks, but I will try to maintain this as a cohesive whole.<br />
<br />burndivehttp://www.blogger.com/profile/05133129688998029494noreply@blogger.com3