Happy Snailsgiving!

We have so much to be thankful for on this Thanksgiving! We have had so many small and huge miracles in the past 3 months, defying all odds and shocking the country's experts is hard to do. In order to make the transplant a success Vanessa had to donate 11 million stem cells. This is hard to do and usually takes 2 days. Vanessa donated 21 million stem cells in 1 day! The doctors said that the stem cells were "magnificent" and that Vanessa and Valerie were a perfect match! They do not know of that many cells ever being donated in one process.
Vanessa and Valerie exchanged gifts just before the transplant. A penguin webkin for Vanessa and a Pocket Dragon for Valerie.
Valerie was very nervous but still her sweet self during the transplant telling the stems cells "Go Stems, Go!" and even helping one along that had found its way into the wrong tube. "This way guys" she told them. A comfort from her angels, the tubing for this is very long and somehow it curled itself into a perfect heart shape and since it was hot pink, it was very pretty. It was very quick only taking about 20 minutes to give her 5 million stem cells. There were jokes made about selling the rest on eBay but for now the other 16 million are frozen but we know we will never need them. Her blood pressure returned to normal in about 20 minutes after and her nurse told her that her heart said, "Ok, I'll take them." So sweet!

The last couple of days have been back to the roller coaster ride we had before. She will be just fine and then 3 minutes later is in horrific pain or sick. They have pretty much figured out her tummy and pain meds because each person is different so it takes a while to get the cocktail just right. The doctors think her body is responding to the transplant already which is amazing but we will not know for sure for 2-3 weeks. Merry Christmas to us! She had Mom's homemade Thanksgiving food yesterday and loved the stuffing ball as usual. Stuffing Balls? Oh yes! Do you love the crunchy of stuffing? You would love these!
Have a Happy Thanksgiving! We are thankful for all of you!

Hot Pink Day! -1

Today was incredible! Vanessa's production of stem cells must have been in overdrive!
They were hoping to harvest 11 million, they got close to 19 million and the quality was great so no need for more shots or another harvest (called apheresis).

Michelle's note- In true Vanessa fashion her stem cells were hot pink not just regular pink! So Vanessa! Somehow I envision hot pink stilettos going in there to kick some ass! Ok so I could not find the right stilettos but these are so Vanessa and even her favorite designer!

Valerie rested today. Found out best to take meds to head off nausea so then she can get a little food down. It's 9:30 now. Valerie is sleeping, Vanessa icing her arms, Sherry and Craig relaxing. I will stay the night at hospital. It is a privileged to be part of this and to see all of the miracles first hand. The big day is tomorrow. Please pray for acceptance and that the new baby stem cells get busy making bone marrow and then blood ready to fight and kill the leukemia. Usually takes 2-3 weeks before results start to show up.
God bless us all!
GayLynn

3 Days for Team Snail

Team Snail Light the Night in SD

Fundraiser Night in Colorado

Calling all Colorado Team Snail Members! On the Border at Southlands Mall in Aurora is having a fund raising night for The Valerie Seastrom Foundation on December 3rd from 5-close. Please come have a bite to eat to support our little snail. 10% of your bill (before taxes) will go to Valerie to help her with the enormous costs. Mexican food happens to be one of her favorites and I have never seen the girl turn down a margarita (she gets that from me) so come have one and toast Valerie with us!

You must have this flyer!!! Please print it out by clicking on it and it will open in a tab for you or email me to have it sent direct. If you are on the email distro it is being sent to your email box already.
Thank you for the amazing support you are giving my baby sister and our family in this crazy time!

Amazing Snail Hats

http://crochetandappliquesboutique.com/
Cathryn found this amazingly talented lady on Etsy to make a hat for Valerie and turns out she barely takes it off. The original hat is black and has 2 flowers that can be removed so she can wear none, one or both depending on her mood. This is the new set that Valerie has not even seen yet because Jen just finished them and they are being sent as I am typing this. The snail was a custom order (of course) and can be removed as well so that she can use it on any of her hats and the blue star the same. Valerie picked the colors of the new hats so she can be cheery and if you notice she chose the colors of Team Snail out of Jen's rainbow of choices. I don't even think she realized she was doing that but I think it is cute. Jen normally makes kids clothes, hats, mittens etc with all of the popular characters but she makes hats for people going thru chemo in honor of her friend that went thru the same. The hats are so soft and made with such care and love that we just wanted to thank her from all of Team Snail!

Chemo Grad Snail

Never Again!

-2 days until a new Snail

This is Valerie ringing the bell to celebrate her radiation completion! This is a tradition that we thought was very appropriate and signals a round of applause and cheers from everyone within ear shot of the bell.
Valerie has since completed 1/2 of her chemo and as I type is finishing her last bag. Tomorrow is a day of rest, much deserved after this crazy week. Tomorrow, Vanessa will also start the apheresis which will last for 6 hours Monday and 6 hours Tuesday. Vanessa has been having bone pain like Valerie did with the neupogen shots but is taking it like a champ. Of course, Valerie is worried about Vanessa in true Valerie form. -2 days left!
This website had a pretty good simple description of the process if you would like to read it. http://www.mayoclinic.com/health/bone-marrow/MY00525

A message from Momma Snail

The last couple of days have been so full of emotion I wanted to send a post from Momma Snail;

As Michelle has already explained Valerie was delayed in getting her room at UCSD and had to start her radiation treatments as an out patient. So when she finally was admitted around noon the next day she was pretty beat up emotionally and tired from the first all body radiation. She had a hard time forcing herself to walk into the hospital knowing it was the last "outside and fresh air" for at least a month. It tore our hearts out to watch her pull every bit of toughness (fangs out) and make herself go in to fight the biggest battle yet. She did it with her head held high in true Snail Snail fashion! It was the right room however with a big tree just outside her window that is full of honey bees and humming birds (her favorite) for her to see and a west view so she can see every sunset! Just as she got settled into her new room was just in time to be rushed off for her next radiation treatment. These treatments played a hard toll on her late day yesterday and she had a hard time, but thankfully by morning they had her meds figured out and she was feeling ok. Today she started at 8 am with radiation, then surgery to implant her new "port line" in her chest at 1:00 just out of recovery she was taken back to radiation at 3:00 finally at 4:30 when she returned she settled in and could rest. The old stand by mac and cheese (rice noodles of course) worked again being the first thing she was able to eat in 20 hours followed by fruit snacks and a couple M&M's and she was "so full"! We then had to tear ourselves away to return to my place to start Vanessa's shots, she looked into my eyes and said "but Mommy I hardly saw you today", I told her, no honey I was here looking at the back of doors waiting for you to be given back to us. I delayed as long as I could (they have a timed schedule on when Vanessa has to take shots and they cant come to hospital because they are "out patient"). Just as we started to leave I was telling her Brent was due to be here any minute and she said are you sure is he coming soon, low and behold he walked in the door focused right on her eyes and said, "Hi sweetheart, how are you doin'", feeewwww great timing Brent!!!!! So we left knowing she was happy. She had a heck of a hard day! Vanessa had her first two shots tonight and she said they were "very painful", again showing us how brave Valerie has been having many of them already. Vanessa is getting lots of rest and trying to be as strong going into this process as possible. She is waiting for her hubby to arrive at midnight tonight! He is coming to stand by her and support her through this scary week. GayLynn has been my rock since Sunday, putting up with tears and lack of patience (I am wearing pretty thin), she has been cooking, cleaning, giving shots!!!!! and being as terrific as always for Valerie and Vanessa and of course, (thank God), being my big sister!!!!!!!!!! The typical schedule is counted in negative days prior to transplant and positive days after transplant with the transplant day being day 0 and often called her second birthday. Valerie is at -4 tomorrow, one more day of radiation then two days of chemo followed by one day of rest prior to transplant. When all goes as planned Vanessa donates Monday and Tuesday and Valerie gets transplant Tuesday!!!!! Live transplants are traditionally more successful so we are on the right path to success for both girls and "100% healing for forever" for Valerie. Please remember to pray for her everyday but also and especially for Valerie for Tuesday and Vanessa for Monday and Tuesday that everything goes as planned, smoothly without complications!!!!!!!! WE are believing for a miracle!!!!!!! Valerie continues to empress me everyday (I see so much of my Daddy in her her fangs must be German), but the last two days she was amazing!!!!!! She is my hero today and every day for the rest of my life! Fighting on..... Momma Snail 11-19-09

Finally a Place for Snail

So many things to talk about...
First, Wednesday the 18th-
Valerie went into the hospital for her first radiation treatment at 8 am which from what I can gather takes about an hour. If you can believe it even after this there was still no room so they went back to my Mom's apartment which was chosen because it is 4 minutes from the hospital. Soon they received a phone call that Valerie's room would be ready for her at 12 noon. God's timing yes, she has a great room at the end of the hall so she only has a neighbor on one side and her room faces west for beautiful sunset views and trees for her to look at. My Aunt GayLynn and Vanessa went to a meeting with our transplant coordinator Ursula to review shot giving technique and pick up the magic shots that will boost up Vanessa's WBC's so she has plenty for Valerie. At 3pm Valerie had another radiation round and by 6:30pm was really sick. Thankfully she is in the hospital now where they can control this and by the morning she was better.

Thursday the 19th-
Today was a busy day again of course. Valerie was not able to eat anything all day until 4pm after all of her treatments. She had radiation at 8am and had another line put in for her transplant at 1 and radiation at 3 so food finally at 4. The new line is bigger so that there is no squishing of stem cells! I was able to talk to her today and honestly her voice sounded good. I know she is feeling awful and today was scary but we are moving along. 2 more radiation treatments to go and 4 days until transplant.
Vanessa's first shots were today and of course fashionable accessorized by Hello Kitty Band-Aids. She said they feel like if you were pouring tequila on an open wound but well worth it of course. Her husband JP arrives late tonight to support her on her side of the transplant on Monday and Tuesday.

Gluten-Free
It is shocking sometimes when something so normal to us is not available. This is the 2nd hospital that does not have a gluten free menu. Shocking because gluten intolerance, allergy or Celiac is 1 out of every 120 people now. The transplant center normally has very strict rules about outside food but for Valerie there has to be some exceptions. There is a freezer/fridge on the floor that they can use which is a huge help and after meeting with the hospitals dietitian they are actually going to order in GF food for Valerie. Yeah, another hurdle down!

A message from Auntie Shrew

After much preparation yesterday and two trips to favorite spots on the shore, we were all ready to spend the morning waiting for the phone call from the hospital telling Valerie to "come on down". The waiting was stressful, especially as it stretched on and on. We drove to In and Out and Taco Bell for lunch requests, then waited some more. We went out again for frozen yogurt and another visit to Snail Beach to watch the sunset. There were several great dogs romping and playing together including a beautiful Great Dane 16 month old "puppy", a snuffley Bull Dog and a playful Golden Retriever. They were friendly and we all loved petting them especially Valerie. She will not be allowed around dogs for up to a year after the transplant. Her new immune system will be very immature at first. She will need to be very careful as she "grows up". The sunset was gorgeous complete with a crane flying off into the setting sun. We all laughed when we heard it honking. Such a graceful, elegant bird but such a horrible sound. We returned to Sherry's condo (command central) and waited some more. So we watched The Proposal. After several phone calls it was decided that if she wasn't called by 9pm she would be admitted tomorrow morning after her first round of radiation. Craig went to a pharmacy to pick up medicines she needs to take in preparation for radiation. Valerie and Vanessa went back to her apartment for one more night. It's 10:30pm now and we are all going to bed. This was a very long emotional day. Valerie is strong and she trusts in God's timing. She is such an inspiration. So sweet restful sleep to our tough little snail. God's continued blessings to her and all of Team Snail.

Tick Tock, Sign Here, Poke Here, Tick Tock Snail

Hello Team Snail!

The last week has been filled with a lot of waiting, paperwork, meetings and more tests. The short version and great news is that Vanessa will officially be Valerie's match! All T's are crossed and I's are dotted. Vanessa is such a perfect match that she too has not had a virus that 99.5% of the population has had. This means Valerie will not get it from Vanessa's cells right when her immune system is non-existent. And now we wait.
Valerie and Brent have a "normal" weekend planned with a date and everything (good job Doodle). Valerie is trying to feel as normal as possible before she checks into the hospital on the 17th again. The 18th is the day to remember our little snail more than ever and pray until after Thanksgiving and then pray some more. The 18th starts the irradiation, mega chemo and then finally transplant process. After the transplant Valerie will be in the hospital between 4 and 6 weeks. 2010 is sounding great to me!
My Aunt GayLynn is flying out to SD on the 15th to help the local team with the transition back to the hospital and the transplant itself. She has a lot of experience in hospitals and is such a helpful, calm, force to be reckoned with, I can't wait til she gets there.
Yeah Brent! The HUGE case that he and his firm has been working on for 3 years or so they won on Thursday! That means regular work days and not the crazy 16 hour days he has been working. Happier Doodle and Happier Snail!
Mom has been cooking away for the local Team Snail. I am sure they have all gained 10 pounds and I know I have lost 10 since she left! She has also been trying to cheer everyone up by decorating a little for Christmas.

Social Snail

Before Valerie returns to the hospital she had a few visitors yesterday. Her dear friend Lara flew down from San Francisco again to visit her snail. Melissa, Lara and Kristy had a great day of my Mom's food, girl talk and the healing power of laughter.

My care package arrived including the Snail bracelets.( Mom is just being careful with a mask on since she was sick last week.)

Starting Line for Shrew

Vanessa was able to go to the hospital to start her tests today! The sooner the better for our little snail. She sent me this picture when my Dad and she were waiting. It is from her phone so it is fuzzy but I still think it is great! It looks like hope to me!
Don't worry, she is wearing a mask just so she doesn't get sick, that could mean a delay of weeks for the transplant.
She had an EKG, x-rays, tons of blood drawn, vein approval, apheresis orientation and a meeting with the transplant coordinator, Ursula and it is only 3pm there!

Who is Shrew you ask? Vanessa's self given nickname. What is a Shrew? There are these creatures called Elephant Shrews and when Alex was a baby Vanessa took him to their favorite place, the zoo and they both fell in love with these animals. Alex was giggling, Vanessa just thought they were fabulous and so the Snail got a twin named Shrew. How a Chipmunk, a Snail and a Shrew are sisters is only for Vanessa to understand I suppose. :) To this day the boys and Vanessa hold their finger up to the nose and wiggle it around like an Elephant Shrew (below) at each other, it is their greeting.

Typical Snail

This is so Valerie: Our Mom has been sick and so when Valerie saw this flower on the patio of Trader Joe's she knew it would make Mom feel better. They dropped it off at Mom's apartment with a ring of the doorbell just to make Mom smile. Since we name everything, this is Sammy the pink hydrangea.

Snail's Schedule

A change in the Snail's schedule came in the last two days and we were waiting for confirmation before we told everyone. Valerie did not have to go back into Scripps Mercy to have another round of consolidation chemo on Wednesday. Her oncologist and transplant doctors met and agreed that her numbers were so good they would rather she was stronger for the irradiation and transplant chemo. We received the results of her latest bone marrow biopsy and it was CLEAN!! As an added treat she does not have to go in every day to be seen as an outpatient but only a couple times a week. This will really help her strength because just the trips to the hospital or doctor's office wear her out.

Here is the tentative schedule. The dates (starting Nov 14) may be moved up a day or two if possible.

Nov. 6 or 9 Valerie and Vanessa sign paperwork at UCSD

Nov. 9 Vanessa preps at UCSD

Nov 14 Valerie preps at UCSD (CTI and body mapping)

Nov 15 or 16 Valerie is inpatient at UCSD

Nov 18 Valerie starts total body irridiation (2x daily for 3 days)

Nov 20 Vanessa starts Neupogen shots

Nov 21 Valerie starts Chemo for 2 days

Nov 23 Valerie gets to rest

Nov 24 & 25 Vanessa gets Stem Cells harvested
(Cells are counted by the lab and immediately put into Valerie)

Nov 26 Valerie has a brand new immune system!

Two prayer requests (besides the obvious):
My Mom is really sick with a nasty cold and cannot be around Valerie or Vanessa AT ALL! Please pray she gets better right away so she can see Valerie and help with her care. The transplant will be here before we know it and we need her to be well. Here is the wonderful photo she sent me from the beach yesterday. A walk on the beach between naps and Kleenex is great medicine!
Valerie is still weak from the last chemo round. She has really bad days and some days that are pretty good. Please pray for strength, her pain, her poor upset tummy and now a new problem has emerged. She is having a problem with her hip, it just doesn't want to work. The doctors have confirmed that it is not neurological and must be bone or muscle related. This is painful and reduces her independence which we all know she cherishes. Please pray this resolves itself quickly!

The Snail Bracelets Are Here!

If you specifically requested a bracelet they are on the way today! If you would like a bracelet and are in SD please let me know, extras where sent to Brent's house for the SD part of Team Snail. If you would like a bracelet and did not specifically tell me please let me know, more are ordered and I will be happy to send you one in the next batch. All I expect in return is some snail pictures or snail bracelet pictures!

Please remember we are wearing these until Valerie is cured!

Walk with Team Snail!

The Light the Night Walk we did in Denver is going to be in San Diego on November 20th at Qualcomm. I have started a team for everyone who wants to walk for our little Snail! Please visit this link to join Team Snail or donate in Valerie's honor.

http://pages.lightthenight.org/sd/SanDiego09/TeamSnail

Sad Snail

Yesterday Valerie had her bone marrow biopsy and the rest of her tests which are never fun but they went very well. It is nice to have everything done that they need from her in order to go forward with the transplant. Soon they will be able to start on Vanessa's tests.
The Snail is sad today because last night she found out that she does indeed have to go back into the hospital for another round of consolidation chemo while the transplant tests and such are being done. Her oncologist and transplant doctors had a conference yesterday about our little Snail and agreed that there was too much time in between chemo rounds for her to wait for the transplant preparation mega chemo which should be just after Thanksgiving. So here is the new time line:
Valerie back to Scripps Mercy on the 4th of November
Vanessa will start her transplant tests on the 10th of November
Valerie will be out of Scripps on the 11th of November
Vanessa will start the Neupogen shots to build up her WBC's on the 19th of November
Vanessa will have her blood draw for the transplant on the 23rd-24th of November
Valerie will start her mega transplant chemo and transplant sometime this week but we are not sure of the details.

Please pray for pain still, her spirit and great results from all of these tests!

In like a lion, not a Snail

Well this month decided to come in like a lion, hopefully it will go out like a lamb with a smooth transplant. Valerie had another bad day of pain and the meds are just not as effective anymore. Frankly this baffles me because she is a smallish type person and I am sure they have things that can take down an elephant much less a Snail!

Prayer for the pain but also for the rest of her tests tomorrow. She has yet another bone marrow biopsy and the final set of tests that the transplant team needs. Please pray she can have calm thoughts during the biopsy and that the rest of the tests go smoothly as well.