Stranded in Vacaville


My apologies for not updating the blog sooner. My access to the Internet has been scare this past while. That being said, here a re-cap of our latest adventures. Kristin had a wonderful week at home. It was just what the doctor ordered. She was relaxed, content, and rejuvenated. We left for Children's last Wednesday just as Cody and Wyatt were coming down with bad colds. Consequently, that is why we have been in Vacaville until the coast is clear at home. On January 17, Kristin had another bone marrow biopsy and lunbar puncture with interthecal chemo.. the labs on both of these draws came back "clean. " Yippee! This is very good news so now she is ready to move onto the consolidation phase of treatment. This is another phase of the two and a half years of treatment she will undergo. While we have been here, we had to go back to Children's for labs and some severe stomach pains. After an x-ray, we discovered why she was in so much agony. To spare her further embarrassment, lets just say we love Senekot and Milk of Magnesia.

We have been fitted for a beautiful new head of hair. These wigs are free for children under 18 and are made from real hair. They are beautiful. She can get anything length, up to four highlights and it will attached to her head for up to 4 weeks. She was worried about it falling off. She will get a new one every 4 months. This is a great service this company provides. We hope it will get here soon!

I have enjoyed spending time with family. My parents have been good to us and we are lucky to have them so close.

We go back to Oakland tomorrow and are suppose to be admitted over night for more chemo. She will be receiving some new drugs that I still need to read up on. I hope they are kind to her. This has been a rough week for her. We are away from home, she is losing so much hair,missing school and friends and the stomach pain was horrible for her. She has gotten rather thin and hates it. I hear her soft cries in the night and it breaks my heart. We have been sharing a room and I am so glad. These are precious days, the good and the not so good. I love each one of them.

About the t-shirts.... Wonderful Amy Erger and Kristin Van Sitters have put this together to benefit Kristin. I will update this with the info for anyone who wishes to purchase one from them.

I cannot express my thanks enough for the out pouring of compassion, help, and love we have been blessed with. Our lives have been so humbled. It is hard to find the right words to say. We love you all, friends and family!

Warmly, Leslie

Comments

susieq said…
Kristin,

Sorry you can't come home yet! It is no fun to feel like you are in limbo! We pray for you to be well enough to endure the treatments you need. Don't worry about how you look! You are such an amazing young woman! So many people look up to you of all ages. Some you may not even realize! Don't lose heart!

Here's something funny Katie (our almost 8 year old said). I was going to a broadcast and kept telling the kids to be good for dad while I was gone. As I was walking out the door I said,"I'll see you after the Broadcast".
Katie says,"Broadcast? I thought you said you were going to the frog test!"

I laughed so hard!! I could barely concentrate on the "frog test" when I got there!!

We all love you!

Take care,

Sue Lee
January 24, 2008 at 2:11 PM
Becky said…
Hey Kristin,
It was good to catch up, and since today is Saturday, hope you may be close to coming home again.

We are home from our vacation and facing reality. It was a great escape. Like you, we have learned the hard way to be flexible when health issues are concerned. We had changed the tickets three times due to health. When things finally work out (and they will) it is that much sweeter. Learning to be patient may have been our biggest challenge. We kept telling each other that taking the time to get well, even with the ups and downs, was an investment in our future.

Boy, don't some of those tests stink. Sorry you have to put up with them. Craig still isn't loving them either. Hang in there.

We keep you in our hearts and prayers and hope your counts keep improving. They finally took Craig off steriods yesterday and now he's hoping his chipmunk cheeks will go down.

We appreciate your blog and your great example and faith. Thanks for sharing this amazing journey with us.
Love, Becky and Craig
January 26, 2008 at 1:57 PM
Post a Comment

Popular posts from this blog

The Beginning

Image
Hello to all from Children's Hospital Oakland, California To it still difficult to grasp that we are actually here...hearing this news...living in this new world. Kristin's official diagnosis is ACUTE LYMPHOBLASTIC LEUKEMIA precursor b. This is very treatable form of cancer. She is enrolled in a cutting edge program for treating A.L.L.. All of us here are very optimistic. She is under the care of amazing Doctors and the recipient of the miracles of modern medicine. It will be a very rough 2 years or so, but she will survive. Thus far, we have been on the fast track. This is an amazing institution and we are very, very fortunate to be here. Nothing short of kindness and compassion have been shown to us from the very beginning. Upon our arrival on Monday, she has undergone a bone marrow biopsy, 2 lunbar punctures, echo cardiogram, chest x-ray, broviac cath . placement, and numerous pokes and prods. She received her first chemo treatment; injected into the spinal fluid, Wednes...
Read more

GO GO SPECIAL K!

Our last bone marrow biopsy went great! It showed no leukemia cells. This shows that she is having a positive early response to the chemo which is a very, very good thing! All of her labs are coming back "smashing!" We are dealing with secondary complications such as situational diabetes. This is only tempoary and should resolve once we are off the strong steroids. Consequently she has to have blood sugars checked often, insulin injections, and follow a carb controlled diet. not fun! In trying to be supportive, I am counting carbs along with her. It is hard when someone has a birthday up here every other day and wants to share their cake. Keep the dang cake to yourselves! Kristin is getting very tired more often and is noticing that she can pull out clumps of hair....I am sad. Although I knew this was coming, I was taken back by the situation and caught off guard. Baldness goes hand in hand with leukemia and every parent up here would rather have a beautifully healthy, shini...
Read more

UPDATE

Kristin is currenly in room 5330 getting two units of PRBC's. Her counts are on the way down and I am hoping that this is all the drama we will see. It has been a long, difficult...two months.....seems like forever.... especially as we approach the one year mark. Our daily excursions to Berkley have been uneventful. (I decided that if I had another life, I would like it to be in Berkley. I love this area!) We are going to Alta Bates Hospital. I am taken by the compassion, charity, and warmth that the patients are treated with here. It is the same spirit you feel when you walk onto the 5th floor here at CHO. Wonderful people who truly and compassionately love what they do. Back to her radiation.....Her radiation takes all of two minutes. I call it a "lick." Thankfully she is getting a very low dose so the side effects are pretty much nil. Kristin really looks forward to returning to school on a more regular basis. I cannot begin to tell you of the hardships Kristin has ...
Read more