Swirly Snail or Soggy Snail

I am headed into the storm tomorrow to visit our little snail! The weather in California has been insane with rain so heavy Valerie cannot see across the street, snow in feet expected tomorrow in the mountains and yes, even a tornado in Newport Beach and a tornado warning in San Diego. It sounds more like Denver than San Diego! Cannot wait to give you a full report after my trip. Stay safe and dry!

Rash, Rash Go Away. Don't Come Again Another Day!

Unfortunately Valerie's rash went from horrible to ridiculous to "out of control" per the doctors. The details of the rash are not important but it reached a point that it was keeping her from sleeping and starting to really mess with her mental state. Towards the end of the week the doctors increased her steriods and anti-rejection drugs to try to combat the rash. The skin biopsy results came back but they were not really clear so it is possible the rash is a small amount of GVH or antibiotic reaction or both so, they are treating it accordingly. Finally on Friday night the rash calmed down a bit and Valerie slept for 10 hours! Please keep praying for this nasty side effect to go away.
Some praises!!!
The little bit of GVH they are seeing is actually a good thing. A tiny bit means that Vanessa's cells were different enough some how that Valerie's system knows they are there. A lot of GVH is horrible but we will take the tiny bit.
Valerie sounds more like herself and is gaining a bit of strength every day!
She took a walk around the whole block (with Brent's supervision of course)
She can make herself breakfast and lunch.
She has made my to-do list for when I come to visit on Thursday.

Amlavi loves Snail

Our dear friends Dayn and John have a AMAZING company called Amlavi. They have a boutique in Denver that is like walking into a little bit of heaven. Pampering, relaxation, fabulous products and coffee of course. The product line is unlike any other ranging from lotions, shampoo, tea and my favorite sunscreen. The truly wonderful part about this is that the company is run with the highest of ethics toward the environment, ingredients and humanity. The ingredients are so pure and work so well even my Dad endorses them (if you know my Dad you know that is a miracle!)

Amlavi meaning Love, Laughter and Life would like to spread a bit of their Love to Team Snail! Either stop by the boutique or take a peek online, any member of Team Snail will receive 10% off their order and 10% of their total will be donated to Valerie. Please remember to put the discount code "Snail" in the online order form or when you stop in!

Trust me, a little bit and you will be hooked!

www.amlavi.com or 2240 Clay Street, Denver CO 80211 303-999-0609

Snail on Steroids

I am sort of kidding of course. The doctors have given Valerie a steroid for her rash that is helping slowly but what can you expect from a snail. Her health continues to improve and she is gaining bits of strength every day. I spoke with her today and she said she is so grateful to be doing so well and to have stayed out of the hospital since her transplant. The doctor told her that she could even take a walk around the block (with Brent's help of course)! For our outside girl that has been cooped up for months, this is a tiny light at the end of a very long tunnel!

Great Snaily News!

Fabulous Snail News today! Valerie's biopsy results came back and there was no leukemia and good bone marrow growth! This means that there was no bad leukemic cells and that the transplant is working because she is making new bone marrow from Vanessa's fabulous hot pink stiletto's. The next biopsy will probably be at the 100 day mark. You can keep track with the snail ticker on the front top right of the blog. This is what I felt like when I heard the news!

They also decided she could go to 2 days a week for her outpatient visits. This is great news because it will give her less exposure and more time to rest.
Please pray for Valerie's rash and feet. They did the tests today to figure out what is causing it but it will take 2 weeks to get the results and that will be a full month of this agony.
I am proud to say that this is my 100th post and what a amazing thing to report to all of Team Snail! Valerie is in remission!

Mom is home!

After 4 long months our Mom has made the long journey back to the arctic we call Colorado. It was horribly hard for her to leave our little Snail but time to come home. Greg flew out to SD to spend Christmas with Valerie and Mom and then drove Mom home. Yeah Greg! Mom is spending this week resting, unpacking and getting used to being a Mile High again!

Snail's Silent Language

Every week it gets harder and harder to write about our little Snail. I think it is partly because I have been away from her for what seems like forever (9 weeks) and the silent language of sisters is faint. The language that has no real words and yet is something we understand so clearly with only one look or touch. It is also because it is hard to understand all of the medical terms and what is normal or not. I am an extremely visual person so hearing the latest update is often Greek to me. I also am left to wonder if she is really ok or if my Team Snail informants are sparing me details because there is nothing I can do to help her. I apologize for my delay, here is the update you have all waited patiently to read...

Currently Valerie visits the infusion center (outpatient clinic) 3 times each week and an appointment with her transplant doctor or her NP, Carrie. Her appointment is usually around 9 am and then her blood is drawn to check her blood component levels which include her white blood cells, platelets, red blood cells, etc. They are also checking for her chemistry such as magnesium and potassium in particular. She is on meds that deplete her magnesium and potassium. If there is no wait and her levels look good she can be finished in an hour and a half. This has only happened once so far and the more common appointment keeps her there until 4 or 5 pm. Keep in mind Valerie is very much like an infant in that she has to sleep a lot and of course her delicate immune system. This long day is physically and emotionally hard on our little Snail.

Going back to Tuesday, December 15th, Valerie started another anti-biotic, Dapsone, an oral capsule. She needs to take an anti-biotic that targets a particular type of pneumonia called PCP which she is suseptable to. Within 2 hours of taking the Dapsone, she started to get nauseous. Her doctor stopped the Dapsone on the 18th and substituted it for an IV version of another anti-biotic. True to form, she had a reaction to this anti-biotic as well. This time she began to rash even before the IV was finished. She was immediately put on IV Benadryl to calm the rash. She continued to take Benadryl over the weekend and through the next week. The nausea from the Dapsone has continued since, but has been subsiding little by little. Today she can eat fairly well with the help of some meds and she is so much better than 2 weeks ago when literally a cup of food would have been a good amount for a whole day.

The rash is running its course and just when we think it is almost gone it comes charging back today. It started on her ears, moved to her hands, then feet and over the rest of her body. Her feet have been bright red, hot to the touch and felt like "walking on nails that were on fire". Mom and Dad packed her feet in ice at first then moved onto gel cold packs. Rotating several packs from the freezer to her feet, it is the only thing that helped at all. She could literally turn the packs from frozen to warm to the touch within a few minutes. This lasted from the 24th until the 28th. Finally Snail was given a different anti-histamine much stronger than Benadryl and her usual Pepcid was changed to Zantac. Apparently there are 2 different kinds of histamine receptors. The H1 receptors respond well to the super strong Benadryl stuff and Zantac contains an ingredient that blocks the H2 receptors. (See, Greek) All I know for sure is that this combo seemed to help.

Brent took this week off from work so he and Valerie were able to spend some much needed time together. She is finally feeling somewhat better enough that they can go see the beach after her appointments or go see the sunset. This is the one they saw tonight.
On New Years Day, Brent took Valerie to Sunset Cliffs to ring in their new year and San Diego's gorgeous horizon did not disappoint. My Dad took these pictures from the bay. I can't help but think that it is a sort of promise for things to come. It is horrible for a big sister or any other member of Team Snail to hear what our little Snail is having to endure. She is stronger than all of us and amazes us daily! In this we can take comfort and joy, she is really doing well by transplant standards and after all of the chemo and radiation. To us it is horrible but to the doctors she is great! Keep going Snail! We are in front, side and behind you all the way.