Hans and Dr. Framberg

Hans loved Dr. Framberg and the team at Methodist for Radiation!

Hans With His Nurses

This is a photo of Hans with Maggie, Belinda and Cynthia, all nurses at the clinic.

Hans starting BMT

Hans has actually been in a great mood this past week. It's been nice because even though he was in the hospital he hasn't really been sick. They just needed to sit on him and keep him in place until they were ready to start the transplant process. Now that his PIC line is in and is working well, and Hans has taken another complete ten-day course of antibiotics he can begin. He'll get four straight days of chemo, then two days rest and he'll get his stem cells back. Since these are his own cells, there isn't a risk of Host-Graft disease. However, his blood counts will be very low and he'll be at risk for general infections. They expect his counts to start coming back up within two weeks. Best case scenario, we'll be heading home in about three weeks!

Thanks for keeping Hans in your prayers. He has been such a little trooper! He's lucky to have all of you in his corner.

Lara

HANS TO START BMT ON THURSDAY

Just spoke with Lara and Hans' got his PIC Line this morning and everything went fine. He should probably just sleep his way through today.

Kev and Lara were also told that the doctors are ready to start Hans' bone marrow transplant this Thursday. It's nice to finally have a new start date. Hans will have four days of continuous chemo, then a few days break, before they are able to re-introduce the stem cells that were previously harvested from him. We're hoping for a 'short' hospital stay of 4 weeks or so if everything goes well.

Hans is going to have a rough time of it for a little while here, so be sure to keep him in your heart and prayers.

Kathy

Hans is in Room #844

Lara said that the removal of Hans' central line went well. He has a temporary IV until they can insert the PIC line early next week. They also heard that Hans will not be discharged from the hospital. The doctors want him to remain in the hospital while he is on the antibiotics prior to the BMT. So for the next 6 or 7 weeks, room #844 will be home.

Kathy

Cultures came back positive

I spoke with Lara this morning and Hans' latest cultures came back with the same bacteria that put him into ICU right after surgery. It is a 'sticky' kind of bacteria that clings to the inside of his central line making it very hard to treat with antibiotics.

The plan is to remove his central line Friday morning and put a PIC line in his arm. Hans will be on antibiotics for another 10 days so that he is infection free entering into his BMT. Right now, they are looking at either April 20th or 23rd as a new start date for the BMT. The doctors haven't mentioned discharging Hans in the interim so they are just in the 'wait and see' mode.

Hans is in his 'hospital mode' - just sort of relaxing, watching his videos, playing with some toys, and doing his little art projects and puzzles. He has learned to get around his room, pushing his own IV pole, so that he isn't having to spend all of his days in bed. He's been enjoying all of the e-cards - so keep them coming!

It is so comforting to know that so many people have them all in their prayers and positive thoughts. The compassion of everyone is amazing!

Kathy

Thought you all might enjoy a recent picture of Elle and Hans. It was taken at Hans' last radiation visit in March. I love Elle's protective hug and their smiling faces.

Grandma Kathy

Hans Admitted to TCH

After a quiet Easter at home, on Monday Hans went to the BMT clinic for a pre-transplant check in. His blood work showed his central line infection is still present, and so, he was admitted to the 8th floor (room 844). The plan now is that he will remain in the hospital until the infection is gone (whether or not the central line has to be replaced is still undecided) and then they will go ahead with the transplant.
He has settled into his room and is looking very cute with a little bit of soft brown hair.
Thanks for keeping him and his family in your thoughts and prayers as they move into this important step in Hans' journey!

Stephanie
G'ma from Seattle

Please send letter of support Today!

There is pending legsilation in congress called the Conquer Childhood Cancer Act. This bill was put together by a senator and a legislator whose adopted daughter died of Neuroblastoma. The legislation would increase pediatric cancer funding, among other things. Our doctor has explained to us that this funding has been dwindling over the past four years.
Please click http://olpa.od.nih.gov/legislation/109/pendinglegislation/childhoodcancer.asp to read more.
I think we all need to send letters of support to our congresspeople and our senators. It is fairly easy to send your congressperson an email. Just click: http://www.house.gov/writerep/.
Don't forget your Senators, just click here: http://www.senate.gov/general/contact_information/senators_cfm.cfm.

I am going to send them all a letter today.

Thank you so much!

Lara

Bone Scan Normal!

Just a very quick note to say that Hans' bone scan was normal!

We had a brief meeting with Dr. Russell and she said that Hans is still on track to go into BMT next week, we just have to make sure no bacteria grow in his blood cultures and we're good to go.

Hans is doing well at home. He's eating well and having fun with his kitties. And, he has actually done okay taking his oral steriods!

My mom is going to check out of her hotel tomorrow - she's getting better.

Good night!

Lara

Chillin' with Orange

Hans is chillin on the futon with his favorite kitty, Orange! A huge thanks to Jim Smiley. He volunteered to drive this kitty into Houston for a specialty surgery. We weren't able to commit to a day we could take the kitty with our crazy schedule. Jim really helped out and Hans appreciates it very much. Hans and Orange haven't really left each other's side this evening.

Change of plans means home for now

Hello,
We learned yesterday that Hans's stay in the hospital would end sooner than we had thought!
Once the Attending Physician on the Bone Marrow Unit reviewed Hans's chart yesterday, he decided he'd rather be safe than sorry regarding Hans's infected line. He gave our Oncologist the choice of pulling out his central line, or waiting til Hans had negative blood cultures after receiving a full course of antibiotics before putting him through BMT. She opted for the latter. We are home and are waiting for his IV antibiotics to come via courier. He'll be getting 6 doses a day - plus his steroids. I might as well go to nursing school! Ha. I'm really not cut out for nursing. The new plan is that we know by Tuesday if his cultures stay negative, and then we can go ahead with transplant next Thursday, the 12th! What a roller coaster we are riding!

Hans also had a bone scan today - our doctor just wanted to be sure he was starting with a clean slate for the BMT. I pray that the results come back normal. We should know in a day or two...

Needless to say - if there is a postive result on the blood cultures, or if there is something on the Bone Scan the Plan will change. I generally do better when we're working on a well-established plan - so all these changes take their toll. But the bottom line is that Hans is handling everything beautifully. Every single one of the kids we have met going through this experience is pretty amazing!

On the bright side, we're home for Easter! Hans will only be that much stronger before we do go into Bone Marrow. And, Hans' little buddy, Patrick, is going into Bone Marrow Transplant on that same day. It'll be quite an experience - amazing to be going through it with a friend.

On the down side... my poor mom just checked into a hotel with Elle! She just started antibiotics for bronchitis and Elle was showing symptoms of a cold. They're just playing it safe, but I feel for them. Hopefully they'll only be away a night or two...

That's "all" for now...
Lara