We just got news that Hans will be admitted at UCSF for MIBG therapy tomorrow.
At present, I'm a real disaster. We've been put through a horrible emotional ringer the past 24 hours.
- at first we were under the impression that we made counts to go
- we were then told Hans was excluded due to his platelets (Which were 83 yesterday)
We were desperately confused as we'd been told that Hans had to have Platelets of 20. Hans said, "Do they need to hire me to do their math for them? I made counts by 63!" I guess they didn't like a downward trend and wanted Hans' platelets to be "his own".
-UCSF suggested hans get MIBG therapy there on 1/26/12
- Our doc is currently in India - she was pleading via email, along with the rest of our CHLA team, to take Hans NOW.
- CHOP was put on call. We were looking into an MIBG opening there next week as an alternate.
-Hans went in for a re-check of labs today and his platelets came back at 72.
- The UCSF team reconsidered and we werejust told we could be taken.
- At one point in the past 24 hours we were told IF we went, it'd be on Friday, not Thursday.
- We were just told to be here at 10 tomorrow for intake.
My nerves are shot. We've been through a really unpleasant emotional experience. We've lost a day of planning and packing. We've lost a hold on whatever emotional grip on reality we had. But now we've gotta scoop ourselves up and hit the road in the morning with the conviction that it has to be the best choice. I know I'll shake off all this negative energy but I also know it'll take a while. It's hard not to be able to tell Hans what to expect. Now he's upset that we're back to the plan of leaving early Weds when we'd all been told we got an extra day.
I just talked to the NP and she has ativan orders on board to keep Hans relaxed.
I'll update you from SF. Maybe this will be one of those surprises and the worst of it is just getting there??? Please pray for this MIBG therapy to reduce or erase Hans' disease burden!
15 comments:
We are praying!! I am so sorry to hear of the emotional roller coaster you are dealing with. But, I know you will be able to shake this off and do what needs to be done to get Hans through this next hurdle...it's just the kind of great mom you are! Safe travels.
Ugh. I'm sorry to hear about the plans up in the air. I hate that unsettled feeling. Hope that MIBG kicks the crap out of Hans's disease burden and that you and he are sitting on the dock of the bay in no time.
Margot
I know that the uncertainties and mixed messages have wrecked havoc with the emotional well-being of your dear family!
Take a DEEP breath...and be ready to GO!
HANS...your math skills are excellent, as are your strategies for cleaning car windows! You are a future business entrepreneur! Love that photo!!
Cheering you on with loving thoughts thoughts and prayers while visualizing Hans with absolutely no burden of disease!
Love, hugs, AND smooches...
Aunt Susy
Praying for the best! Some wrapped goodies and gift cards on their way to Roxie's...should be there tomorrow or Thursday from the AZ gang. Let Hans know that KK did the picking of goodies - and I think she did a good job!
Prays for success and a safe trip!
Love,
Aunt Holly and Uncle Michael
Absolutely praying for Hans' health & all of your emotional well being. Hang in there & drive safely to SF. On a lighter note, that is one of the best pics I have ever seen. Hans is totally adorable & takes his window cleaning responsibilities seriously!
Love you, Weberlings. Keep the faith, I have a good feeling about this round at SF. You are an amazing woman and your love for this little guy is so incredible! Roller coaster...what a great analogy! Hang in there, girl. Huge hugs to you all! Got the circle in full prayer mode and that's all I need to know! Much love & grace your way! Love, Wendi from E'burg.
Oh Lara, I am so sorry about all the confusion! That has to gnaw at your last nerve!! But one thing I know is God has given you amazing ability as a Mom, He will NOT fail you now! Praying the MIBG does it's job quickly! Love, Cindy
Praying for your family. You and Hans are both AMAZING people. I wish I could be half the mom you are. After reading your blog for several years you are awesome w/ handling life for Hans while trying to still keep things "normal" for Elle. I know you will make it through this. My heart just breaks for Hans. Praying things get better.
I hope that you can all feel the love and prayers that will deliver you safely to your destination as you ride this wild coaster. You are all so much stronger than you will ever know! Praying for a safe trip, a smooth hospital stay, and loads of healing!
Sending all our love and positive thoughts and prayer to you.
love
Tanja & the Texas clan
Lots of prayers coming your way! Hopefully the drive up there gave you time to get mentally settled and ready to go. Hans is going to do great!! You're an amazing mom and I know you're doing everything you can to make it go as smoothly as possible.
Love,
Sarah
How stressful! Good luck to you - the whole thing is very stressful until it begins and it ends up being surprisingly easy. We did give Will IV meds to chill him out so that the foley wasn't too uncomfortable. Also, unlike most kids Will did vomit both times he did MIBG therapy about 4 hours after the infusion for about an hour. However, compared to everything else it is about as easy a treatment as possible given the lead shields, Geiger counters, plastic coating everything, radioactive urine, and that fact that they keep everything he touches. It does not sound very reassuring to read/type but it is surprisingly 'chill'. Good luck - LOVE the picture!
hope the trip is easy and that the MIBG wipes out the spots.
I'm chuckling at Hans washing the windshield! Good job!
prayers and hugs,
You are such an amazingly strong Mama & women. I wish you a safe journey & Big POSITIVE results from this trip.
I Love the picture & Hans's declaration of his superior math skills. The boy has the 'tude' he needs to beat this disease burden. bless you all & love to Elle too. I hope she had an amazing cruise. <3
Lots of Love & positive Energy,
Cousin Jenny
great picture - sorry for the confusion/stress.......... thanks for keeping us informed.... have I ever said that Hans is my hero!?
Post a Comment