Tired Sunny Snail

The prestigious (we are told he is famous!) Dr Gonzalo Ballon-Landa, Diplomat of the Subspecialty Board of Infectious Diseases came into Valerie's room today and said, “Your still smiling, where ever you are its sunny. You bring Sunshine to everyone around you Valerie!” That is the single best compliment I think she could receive considering everything! He went on to say, “You have something so special, we love to see your smile”. WOW! Our Dad and Mom were so proud of her, she just humbly said thank you and smiled. He asked for us to request him when we check her back in he wants to continue with her, that is a blessing and a big deal we are told. Wt count 6.7 Red10 (just got blood) and platelet’s, 132k wow.

Valerie had another bone marrow biopsy today but her reward was getting to go home for a few days! She had a hard time when she left the hospital, getting over stimulated by everything and crying most of the way home. She says she is just completely drained of emotional and physical strength. Please pray that she stays well enough to stay home until the 13th, she can be rejuvenated and the upcoming appointments with the transplant team go well.

She still can't have a lot of visitors because her immune system is not up to snuff. She still has to have 24 hour help and now watched even more carefully by whoever is watching her. Hopefully she will be able to have some peace and relaxation this week. She cannot be in direct sunlight but if she is covered up she can go sit on her favorite spot on the beach.

Snail On The Move, Slowly Of Course

Valerie gets to go home tomorrow! The doctors continue to be giddy with Valerie's amazing results and is giving her a little reward. She gets to go home for about 6 days before her next round of chemo starts. She will have lots of doctors appointments still with her oncologist and the transplant team but hopefully she will have some time to relax and sleep without being poked too much. If she is up to it she is looking forward to going to her favorite spot in La Jolla to look at the seals and the water. The snail will have her freedom soon!

Peek-A-Boo Snail

Valerie had a great day today! A little peek of the Valerie we know came out. Her numbers are still making the doctors positively giddy and her side-effects were much better today. She is doing so well that the doctors are probably going to let her go home for a few days before she starts her next round of chemo! A beach trip is mandatory of course and I am pretty sure she would sleep outside if we let her because she has been inside for a month. She felt good enough today to take several walks, eat well and tell everyone how she wanted her room rearranged and cleaned up. Please pray that her numbers hold and her side-effects stay tolerable!My friend Laura is such a wonderful supportive friend, after walking in the Light the Night Walk for Valerie earlier this week, she walked in the Denver Race for the Cure this morning and said that she saw a young girl with Team Snail and a note about Valerie on her back. She said she was probably about 11 years old and with a group of women. I would love to know who this sweet young person was! Of course I would love a picture if there is one but mostly I would love to say THANK YOU! THANK YOU! I am so thrilled that my baby sister is being represented so proudly even when I take the morning off (nasty migraine today)and I am so proud of our family and friends that have supported us in this time of need. Please send me an email if you were part of this amazing group.When I was in San Diego last I went and got a internet thing so Valerie could have real internet and not the wireless issues the hospital has so, you can start sending emails directly to her now. It may take her a while to get to them and she may not respond to every single one but she loves the notes.

Snail-effects

The Yo-Yo continues! Because of the massive amount of drugs Valerie is on her body is trying to kick them out. Who can blame it but this means more high fevers, shakes and itches that are hardly bearable. On Saturday she was up all night with the shakes and during the day her fever spiked up to 104ish again and they had to ice her down because the Tylenol was not working fast enough. Clinically the doctors are very happy because her WBC's, platelets and RBC's are continuing to go up on their own but the side effects are making her miserable. Please pray for the numbers to continue but for the side effects to calm down!

Yo-Yo Goes the Snail!

Thursday was an eventful day with the biopsy results coming back CLEAN! We also had our Team Snail Light the Night Walk which was fabulous! All of our pictures are added to the Snail Travels slide show below!
Speaking of which, I need snail pictures please! New York and Chicago and beach people I am especially talking to you! I know you can find some clever places for the snail but you are not off the hook Texas, snails like the country too! Valerie's mood has started to take a dive and she loves nothing more than pictures and cards. Thank you so much to her work friends for the posters and video! She loves them! I have attached the snail again :)

This is the update I got from my mom in the afternoon Thursday:
Nice additions to the SD team snail Vanessa and JP arrived early bearing new gifts and GF foods she was so happy to see them, then Kim came by bearing tons of wonderful posters made by all her friends at work enough that they could have wallpapered her already covered walls so she picked her favorite three and they now grace the walls too. He “germinator Dr” came by to show her rash to interns saying it was a very angry rash and fever due to antibiotic she said it sure is angry and hot too so sweet. She has bad shakes from the fever and reaction she hates it, kept her up last night so we passed on a shower so far today hoping it will stay calmer. Great news on the biopsy however kept her going to day hoping to stay on track to the road to recovery as designed right now. Dr said he would try to get her pre-registered so we could start conversations regarding testing and timing with transplant team asap. She is all puffy from reaction and hates her swollen face and stomach she actually gained weight due to water retaining etc this is temporary but she does not like it. Seems to be coughing more but Dr says pneumonia looks the same and is ok (if it can be) Hope the walk goes well and there are lots to represent Team Snail!!!!!!

Thursday/Friday midnight:
Well, really late last night I started getting texts that the doctors were concerned because her WBC's jumped from 200 to 1,200 in one day. They said this could be the leukemia coming back already which would mean more chemo and delay the transplant. We would have to see what would happen in the morning. Overnight Valerie's temperature spiked to 104 and she had the shakes really bad. In the morning her blood tests came back showing a jump to 4.2 WBC's and the fever and shakes continued throughout the day. The doctors were saying the leukemia could be back already even though her bone marrow biopsy said clean; they would need to do another one. The doctors said the fever could be from infection, it could be from the WBC's coming back so fast or it could be her reaction to all of the meds so more tests were ordered!

Friday night:
Finally late last night we had some answers. Here is the update my dad sent me:

WBC's at 4.2 up from 1.2 yesterday

Platelets at 22 up from 16 yesterday (without a transfusion)

Hemoglobin at 8.7 up from 8.5 yesterday (without a transfusion)

Dr Belani was much happier today. With the extreme rise in WBC yesterday he was afraid the leukemia had made a roaring comeback. If this were true, the platelets and hemoglobin numbers should have fallen. Since both rose today he is more confident that the rise in WBC is due to good WBC cells being produced. He has never seen someone with such a quick rise in WBC cells before and was concerned. Another indicator was that the percentage of good to bad cells rose today (so less bad cells than yesterday). The slower rise in hemoglobin is because hemoglobin is just slower to come back.

Other news:

Neupogen injections (to promote WBC's production) stopped today.

Valerie is mostly off her neutropenic diet. She can now eat some fresh fruits and vegetables.

Studies will come back Monday to confirm if the WBC cells are good or leukemic. Val's leukemia has a very specific protein pattern so they will now be able to determine if we should be concerned about her huge rise in WBC cells.

Another bone marrow biopsy will be postponed until next week.

More answered prayers!

Ode to my Valerie- by Tali

Valerie oh Valerie
How I miss you so
I think about you everyday
and pray your white blood cells grow :)
You have shown the strength that you posses
and I am so proud of you
To be your friend and have you for a friend
Means so much to me, it's true.
So be brave and keep fighting on
We are all here for you
Sending strength and positive thoughts
For you and your family too!

Ode to the White Blood Cell

by Daisy and Jessica Mash - recovering from a stem cell transplant
Permission of Rene Marston from Contact magazine

Welcome, greetings little cell
What a wondrous sight you be.
But please go forth and multiply
For more we need to see.

You have a busy time ahead,
To fight the nasty stuff.
So just you go and find some mates
'Cuz one ain't quite enough!

Don your armor, raise your sword,
And into battle ride.
show not faint heart nor weak intent
'Cuz we're all on your side!

And then, victorious may you rise
In a host who's fit and strong.
Then send her out into the world,
She's been abed for far too long!

She just wants healthy bits and bobs,
Her arms, her legs her hooter.
So she can get right outta here,
And ride upon his scooter!