September 13

Hello Everyone,

It has now been a couple of weeks since the last email update which means that it has been a fairly calm couple of weeks and that has been good and bad. Let me explain.

After Lindsey's surgery to move her ovaries she should have had a week to regain some of her strength before beginning radiation. She however had 2 weeks and that is not good for the bigger picture. The insurance decided that where she was scheduled for her radiation treatments was out of network and therefore not covered. They had to jump thru all kinds of hoops to get things in order. When things seem to be at their most difficult you know that there is always going to be one more brick thrown on the pile and it was. However, after the delay Lindsey has now begun her radiation treatments. I've mentioned to a few people who corner me about how I'm feeling that it truly feels as if we've been in the eye of the storm. We survived pain, fear, the unknown, ICU, the diagnosis and then experienced this beautiful couple of weeks of our Lindsey being happy, virtually pain free, showing signs of improvement, etc...only to hit the other side of the storm that we now need to weather. The radiologist asked Josh and Lindsey if they wanted to discuss the prognosis. They did not. Lindsey doesn't want someone to tell her how long she has, she wants to be the one to determine her own outcome. The Dr. did say that she wished they could have a couple of extra weeks of radiation but that is not possible as the radiation itself could destroy her. As of right now, after only 2 treatments, the radiation if affecting her nervous system. Her legs have begun to jerk involuntarily which makes walking too much of a challenge without assistance. Josh has purchased a wheelchair to take Lindsey on walks around the neighborhood and as I've mentioned in previous emails, it's nearly impossible to take him away from her side. We are now looking for a walker so she can make it from her bed across the hall. If anyone has one that is not being used please let me know right away.

The side effects:
Initially, we were told the radiation treatments would affect her throat, stomach, colon, which alone would have been life altering. After meeting with the Dr. they narrowed the field of radiation so that it will miss her major organs. They are treating from side to side on her throat rather than front to back. She won't have to deal with sore throats, however, as treatment progresses it will burn her esophagus and eating acidic foods or eating to quickly will be a problem (I know many of the Karrs can relate) They are radiating from above her ears to the tip of her tailbone. She will experience nausea, which she has and is vomiting again. This is detrimental as her weight is already so low. The biggest effect will be the radiation affecting her bone marrow. Once a person is fully grown bone marrow is no longer produced in the extremities, most of the red blood cells are now produced along the spine so with the radiation it can affect her production of red blood cells leaving her anemic. This will be monitored closely and medication dispensed if necessary.

As you can see, the storm is beginning again. Please continue your prayers on her behalf. I once told a close friend the circle grows with people we aren't even aware of and that has been evident in Lindseys case. Entire wards, family relatives, friends that have never met her, have been touched by her journey and are praying on her behalf. I know these prayers are being heard. If you're not a praying person, this is the perfect reason and time to start. Whatever falls from your lips is heard. Thanks to everyone for your love, faith, and concern.

With love,
Julie

August 22

Hi all,

I'm going to keep this short because I'm exhausted and things are calm for the moment.

Lindsey had her surgery on Thursday and came thru it wonderfully. It was very late by the time they even took her down and she hadn't eaten all day, which made her very weak. We didn't see her until 11:30p that night. Friday, she was very sore, hard to turn her neck because of all the manipulation implanting the shunt, but overall she did great. By the time we left that night around 12:30a she was awake and coherent. They moved to her a regular room Friday evening and she was released to come home yesterday afternoon. She is back at her parents home and doing well. She is having another surgery on Tuesday to detach the ovaries from the uterus and move them over to the side. This will give them a chance to protect them during radiation and possibly in the future be able to harvest the eggs. They will wait approx one week before beginning radiation which will consist of 5 days a week for approx 5 weeks. As I mentioned in one of the previous emails, they will not be able to re-radiate after they complete the program so we are praying that the radiation will work.

We are extremely grateful to be through this past week. It has been physically and emotionally exhausting for so many. We've witnessed many miracles from the prayers being offered. Josh has been strengthened as well.

Keep her and Josh in your prayers.

With love,
Julie