OH boy.... what a mystery this kid is this summer. We had a great day on Sunday AND THEN... Sunday night Hans started to have some pain in his HEAD. YIKES! There were bumps on the top of his head, causing him pain enough to take Tylenol w/ Codeine. Kevin and I were up for hours worrying about what that might mean. Monday Hans slept all day on and off while Keiran chilled and I made an attempt at picking up our place, doing laundry, etc etc. I was waiting all day long for the thumbs up from CHOP. AND THEN... at about 4:30 he told me to take his temperature... 102.6! OMG - did I fall apart. Here we had poor Keiran, we're waiting to hop on a plane to start a trial and now this.
So, off to CHLA. I left Keiran with Kevin in Bakersfield and hit the highway to LA. We spent all night in the ER, and then were discharged and released to Aimee's. Come morning he started brewing another 102.0 temp. At the same time I found out they were ready for us at CHOP. Kev had sent Keiran off on an early flight! Poor kiddo - he was sure a good sport about his shortened vacay.
Anyway, we reported to urgent care in the clinic where he continued to have fever and we were admitted. Mysteriously and wonderfully, those bumps on his HEAD went away and stopped hurting. Can you believe that???
Now the 'plan' is: Get Hans cleared for air travel, get to Philly on Sunday, RE SCAN (just found this out: need to re-test marrows and MIBG) and start the trial Tuesday.
Some of our sweet friends have asked us what to pray for. Oh, that is a good question! At some points during this month I've only been able to utter the little prayer "God help us." But I think that Hans is actually just fighting some virus or infection. He actually has a very light disease burden!!!! He just needs to get better and get on a treatment plan.
If you are moved to say a little prayer for Hans, please ask that he gets well enough to get home for a couple of days, stays healthy for a safe flight to Philly on Sunday, that his MIBG scan shows no progression from the 7/14 scan, and that if there really is NB in the marrow that they catch a sample of it so that we can test it for the ALK mutation, and ultimately, that he can start the ALK trial and that it starts working a little miracle soon.
Now, is that too much to ask for??? I absoluetly think not!
About Me
- Hans Weberling
- Bakersfield, CA, United States
- Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.
9 comments:
La - I'm saying them! I'm saying them! And, you know what a prayerful person I am...... love to you and Hansie - give him a kiss from me, huh. love, pl
lots of prayers for all of you! Love to all of you...
Aunt Holly and Uncle Michael
We are praying and have been. The girls always add "Cousin Hans" in their prayers at night. We will say a special one today. Love you all,
Uncle Matt, Auntie Anna, Emma, Hailey, and Ben
Praying for you all!
Hi Lara,
Just thinking about you all and praying that Hans is feeling better and you can make your flight to Philly. I am so sorry you all are on the crazy roller coaster again!
Much love from Texas!
Charon
I live in Philly and have a small child, myself. If you ever need a friend while you are here, it would be my pleasure to treat you to coffee and support. My email is yalibanis@yahoo.com
La - Sitting here with your mom and Dean. Dean says, "I'm saying lots of prays for Hans." And, your mom says, "Hi Lara!" And, we all say, we love you guys!!! pl
Agghh, chaos. I hate it for you. I am thinking hard at the universe and wishing you safe journeys, no fevers, disappearance of bumps in the night and everything else. Love ye.
Ugh, Lara--yuck! We are praying for everything you asked for and more!! Hope Hans feels better soon and you guys are smooth sailing again in no time! He's going to do great in Philly--
love, Sarah
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