Hans "out of the woods" with line infection!

As of Friday morning we found out that Hans' line infection has officially cleared - 72 hours with no growth in his blood cultures! This is great because now he can keep the line and won't have to go through the additional procedures of removing and replacing a line, and then using additional IV's in the interim. I am very relieved about this!

Hans is really doing pretty well - but he has been restricted to his room and he is itching to get out and go for his walks around the floor and go up to the 16th floor vending machines.

He is still due to go into Bone Marrow Transplant on April 5th. Our doctor said he may or may not be able to go home on Monday for a few days. However, if he went home he'd be on several IV antibiotics each day and IV nutrition. It might be easier to keep him in the hospital until Thursday.

Grandma Kathy went home on Wednesday. She sure got a lot done around here. She wound up repainting our downstairs living and dining rooms!! Kathy - Thank you! Thank you! You were a great help.

My mom, 'Grandma Stephanie', got in on Tuesday and she'll be here to help with Elle for now! We are so fortunate to have so much help and support from our families. Elle has been busy with soccer and girl scouts. She loved sleeping over at the Houston Museum of Natural Science with her troop last weekend. A slumber party this weekend gives her another overnight adventure to look forward to.

Thanks to you all for your prayers for Hans. They are working! He's a trooper. It's been fun to read all the ecards. We've been getting a bunch of them.

Lara

Hans Feeling Better Today

I spoke to Lara as she was on a walk today (go Lara-great job getting your walks in!). She said Hans was perking up a lot today. He has been yelling at the t.v., which tells them that he's feeling much better and plus he's doing a lot less sleeping. Unfortunately for now, Hans has to stay in his room. So, let's give it to Hans for being a real trooper, since he's really anxious to take a walk and visit the family room. They will know tomorrow morning after the 72 hour cultures come back, regarding how the infection is clearing up in his main line. Pray that the antibiotics are working and the tests are negative so he won't have to have his main line replaced. The Bone Marrow Transplant has been moved to next Thursday, April 5th. Even though they would love to go home before then, Lara says it's probably best for them to stay in the hospital up until the BMT. It's a lot less of a risk to him of catching a bug at the hospital than in his home probably as well. And, it's much easier giving him the antibiotics and fluids that he needs right there in the hospital room versus at home. The staff on the 9th floor are really keeping a very close eye on him which comforts Lara and Kevin. Hansie has to be all recuperated as he begins his BMT.

Please continue sending encouragement by going to www.texaschildrenshospital.org, clicking on: Parent Resource Center (icon listed on left side of screen), then: Send Patient a Greeting (on left side as well) and follow the remaining instructions. Hans is in room no. 934. It really gives them a boost having the cards come their way. It feels nice when the volunteer from the hospital makes an important stop at Hansie's room to make a delivery!

Carmen

Hans is out of ICU

Hans was moved from ICU to the 9th floor this evening. His blood pressure has improved and his temp is down. The cultures showed that he had an infection in his direct line which they will continue treating with antibiotics.

His new room is #934. Feel free to send him an e-card. The whole family enjoys getting them while they are passing their days in the hospital!

Kathy

Hans moved to ICU

Hans was moved to ICU this morning at about 9:30. He spiked a fever of 105.5 so they quickly moved him up to ICU and have started fluids and antibiotics. They suspect that he may have another infection in his direct line but will know more later today.

He had been doing great and was his playful self up until this set back. Say your prayers that they have jumped on the infection early enough that Hans will quickly resume his way to recovery.

Kathy

Finally on the 9th floor!

Hans finally got moved up to the 9th floor (oncology) at about 9:00 this evening. He had a good day today. He got the nasogastric (ng) tube removed today and was able to take clear liquids. Hopefully he will be able to start on soft foods tomorrow. Hans has even consented to taking a walk tomorrow. I know that he has boxes of girl scout cookies to hand out to the floor - maybe that will be the force behind him!

Kathy

Hans Looks Great!

Elle and I got to see Hans yesterday afternoon and he looks great! Lara has had him sitting up on her lap. The doctors would like to see him start to eat and maybe take a walk. Of course Hans says "no walking" but we'll see. They are also getting the necessary information regarding the medications, things to be watchful for, etc. due to Hans not having any adrenal glands. It's a lot to take in.

They are hoping to move to the 9th floor today, which will be more stimulating to Hans as he has so many friends amongst all of the staff up there. We'll let you know the room number just as soon as they get settled in.

It was nice for Elle to see mom and dad too. She filled them in on her very busy week. Tonight she going to spend a night with her girl scout troop at the Houston Natural Science Museum, Then on Saturday she will be busy with her soccer game and school carnival. Lara's going to try to come home to enjoy Elle's busy day while dad holds things down at the hospital.

Kathy

Hans Resting Comfortably

I spoke with Lara this morning and Hans had a good night. His vitals are all within a comfortable range and they are concentrating on managing his pain. Lara said that the staff has been great and the surgical team is in charge of all of Hans' orders. They are also beginning to research dosage for the medications that Hans will need due to the removal of the remaining adrenal gland.

Lara said that they finally got into a room late last night. He is in room #720 if you would like to send him an e-card through TCH web site.

Again, thanks for all of the thoughts and prayers for little Hans. Lets hope that he just sleeps the next couple of days away while his little body is healing for the next leg of his journey to health!

Kathy

Hans Is Out of Surgery ...And Doing Real Good

I just got off the phone with Kevin a little while ago. Hans got out of surgery a little after 6:00p. He is doing well, resting in the recovery area. He's breathing on his own, no oxygen. Kevin says, he looks very good. Evidently, the ICU is very busy and they have no beds available. But, since he's doing so well, needing no oxygen and doing well with his Morphine pump, it looks like he might be able to go to the 9th floor tomorrow if all continues to keep going well. Sister Elle and Grandma Kathy got to go in and see him. He's still very groggy from the medicines but Kevin said he did communicate with them. Their surgeons were confident that they removed everything that looked suspicious. There was an area around his adrenal gland (which produce various hormones that effects the body) that looked suspicious so they had to remove it. Fortunately, not having this gland is not life threatening. It just means Hans will have to take hormone replacements to manage this throughout his life. He will probably have to wear a medical alert tag just in case of emergencies. The Weberlings are so happy that Hans did so well. This is exactly what they needed.

Here's hoping that Hans makes it through a very speedy recovery so he'll be all set to go in for his BMT, beginning just around the corner, ... March 29th

Yeah Hans! You are truly a remarkable little guy!

Surgery Monday

The surgery is all set for Tomorrow. We check in at 6:15 am. Thank you for keeping him in your thoughts and prayers on this big day.

I'll try to have Carmen or Kathy post something after Hans get out of recovery and we have a room assignment.

I'm not as nervous about this one, but I have no idea why!!!

Radiation is Complete!

As of yesterday, Hans completed his twelve days of radiation. Whoo Hoo!

All of us were able to be there on his last day-Kevin and I, as well as Elle and Grandma Kathy. I got some pictures with the staff. I'll post them eventually! Hans did really really well with Radiation. We can't really detect any side effects yet. He is sleeping in right now, it's nice not to wake him before 6am.

Kevin's mom, Kathy, flew in on Tuesday. We now have four days completely off from the Medical Center. It's strange, it seems like a really long break.

Hans goes in for his second surgery on Monday the 19th. Please keep him in your prayers that day.


We met with the Bone Marrow Transplant people on Monday. They are planning on admitting Hans into the Bone Marrow Unit on March 29th. That's just 10 days of recovery from surgery, but they think Hans will be okay. They told us to expect a hospital stay of about four weeks on the Bone Marrow Unit. This will be our longest admission yet, but at least it's the home stretch.

If you're close by, we might appreciate your recent magazines to pass the time in the hospital (we already get Rolling Stone and National Geographic). Thanks!

Lara

Spring Break

Just a quick note to say that Elle's spring break got off to a slow start. She was diagnosed with Strep Throat yesterday! Poor thing. But, she's on a z-pack and should be great by tomorrow.
The neighbor girls, Madisen and Haleigh, and Elle did a KoolAid stand on Friday and again today. They donated 50% of their proceeds to Hans. Thanks to our generous Neighbors for buying from the girls. It was really sweet of everyone and the girls were having a great time out there! Hans can use his funds to support his latest daily indulgence - an Icee. The good thing about that is that at least we walk up to the Exxon for the Icee. It's either about a third of a mile or a mile, depending on if you take the shortcut by the pond. Tomorrow Elle is going to Schlitterbahn Galveston Island (Water Slides) with Carmen and her family. We're really glad she's gonna have some fun! Tuesday she has another playdate lined up with Kelly and her boys. I feel a little better that she's keeping busy and having some fun. Then, Grandma Kathy gets in Tuesday and they are going to do lots together - especially hit the Houston Livestock Show and Rodeo. Hans will be getting up bright and early for Day 10 of Radiation!
That's all our "news" for now - Lara

Christmas in March

I just wanted to say thanks to Karen Boyd and Sheri Henderson and their Fellowship of the Woodlands Bible Group. They just "adopted" us as I call it, or actually did a nice project for us. They set us up with a dozen big snack bags to take to the clinic or, as inpatients in the hospital. They are really nice and well balanced snack bags. There are so many of them I hardly knew where to put them. They also brought over nice gift cards and a cool little cooler. It was touching especially since we don't even attend that church. This whole community just continues to amaze me. We're still on St. Anne's dinner list. We have been recieving beautiful meals three days a week. It's really perfect since there are days, like yesterday, when we get home from TCH at about 6pm and we're just beat. It's so sweet, three days a week some cute lady shows up with her perfectly balanced meal. What a gift! The Woodlands has been so incredible throughout our crisis. If I ever get it together - I'm writing a letter to Oprah. A lot of you should be on her Angel Network!
Thanks!
Lara

Scans are Complete

Today we have wrapped up this round of scans. Kevin took Hans in early this morning for Radiation treatment #9 (three to go on M, T, W, next week) and then they came home. Later in the afternoon I took Hans back down for his Echocardiogram. I think it went well. For me it was a good sign that the radiologist didn't make an appearance. The tech isn't supposed to tell you too much, but as long as she's not alerted enough to go get the radiologist, I think we're okay. Hans did his audiogram last week and they did find some hi-frequency hearing loss in his left ear (from the chemo). But, the official report read that no amplification is recommended at this time. Basically he lost a few sounds s, f, ch at low decibels in that ear. Another mom of a child with neuroblastoma shared that her daughter had similar hearing loss and that all she has to do is sit near the front of the classroom. I felt better learning that. Kevin and I haven't detected any sign of a hearing problem. But he's so cute, he'll point at his left ear and say, "yeah, there's some damage..." He must have heard me telling someone that...
We are looking forward to another weekend AT HOME! Kevin's mom, Kathy, gets in next Tuesday, so she'll get to come with us to the last day of radiation, then we get four days off before Hans' second surgery on March 19th.

Fabulous News

Hello!
We just got back from TCH and our meeting with Hans' Oncologist, Dr. Heidi Russell, and Hans' surgeon, Dr. Jed Nechturn. the great news is that the Bone Marrow sample was FREE OF TUMOR! I'm so excited about this - I can hardly believe it! Originally there were "clumps of tumor" present in the bone marrow samples. Now they are free. This means that Hans' body is responding well to his treatment protocol. This also means we can go ahead with the Bone Marrow Transplant.

However, first, we will go in for a second surgery. A very small, pancake-shaped piece of tumor was still present on the latest CT scan between the aorta and the right kidney. This isn't new tumor, it was missed during the initial surgery. It will be another day-long surgery, but Dr. Nuchtern really thinks he can get it and we trust him a lot. Going into bone marrow transplant with a clean slate is key to a good long-term outcome for Hans. The good thing is that Hans is much healthier now than he was going into the last surgery, so he shouldn't have as difficult of recovery. Should be about a week of recovery before going into transplant.

Monday's news...

Hans was a pretty darn good sport on Friday for his Dental Work and Bone Marrow Aspiration. They didn't get him into the OR until 1:15 pm, but he didn't complain too much about not being able to eat beforehand. He wound up getting one tooth capped and needing one other filling. You can definately spot the cap. The Bone Marrow Aspiration was done in the back, so he was a little sore for a couple of nights and he slept on his side.

We had a pretty good weekend at home. Hans was able to go to Elle's first soccer game of the season. He didn't seem to like it that Kevin was just sitting with us on the sidelines, (he usually coaches her soccer, but took this season off while Coach Jim Flynn and Coach John Sweebe are doing a great job)! Hans kept telling his dad to "get out there and coach the girls". It was pretty cute.

Tomorrow we'll go back in for an office visit. We should get to meet with the Radiologist, and then the Oncologist and the Surgeon to discuss the best approach to deal with this spot from the CT scan. We'll also get the Bone Marrow Results.

CT Scan results

Well, we got the bummer news yesterday that there was a spot on the CT Scan. The thinking is that it is a little bit of tumor that was somehow missed in surgery. We're not sure, but it appears on the original CT scans and is still there now. It was a little shocking since the MIBG scan was clear. Now we are figuring out the best approach. The good news is that it doesn't appear to be a new tumor growing. Our plan now is to increase the radiation and the re-scan before we go ahead with the Bone Marrow Transplant. We may even be able to consider a second surgery. It has been a bit hard to absorb this over the past 24 hours. We were all just starting to feel so great. It was nice to have the plan all figured out. But, I guess things can just change so quickly!
Tomorrow is the bone marrow aspiration and the dental work. Keep little Hans in your prayers and thoughts, please, for the best possible outcome for tomorrow!
Thank you all.
Lara