Still Holding Up Okay...

Hans is still holding up "okay". His fever got a bit higher last night, it did hit 102.5, so the doctors are broadening the spectrum of anti-fungal preventative meds he's getting. He is also receiving broad-spectrum IV antibiotics. The name of the game is heading off infection now that his white counts will hover at 0 for several days. We just have to pray that the preventative meds do their trick and Hans can avoid battling a nasty infection! Thank you so much for keeping us in your thoughts and prayers through this difficult week.

Hans is getting platelets today. I just went to give him his Tylenol, a standard "pre-med" that he gets along with Benadryl when he gets blood products. Hans still has a bit of spunk, he shook his head vigorously no and said, "Just go work on your 'puter." It does hurt for him to swallow, so he'd do anything to avoid taking oral meds. Fortunately, we're still at the point where he can tolerate Tylenol.

Up here on the 8th floor, Hans' buddy Patrick continues to improve. Other new friends are starting BMT this week including Nathan (pictured with Hans in the newspaper), Ketti and Elizabeth. We are keeping them in our prayers too.

Stem Cells 2

Here's a photo of the actual stem cells themselves, FYI!

Stem Cell Infusion 1

This is a shot of the stem cells being infused. (Sorry about the poor quality.) It just looks like a normal blood transfusion. I was surprised at how quickly it went.

Things are going "As well as you could hope,"

Said Dr. Krance today. Hans continues to sleep it off. His temperature stabilized overnight and now is up to about 99.4. Dr. Krance said that his body is just fighting off bacteria present in his mouth now. His ANC is now officially 0.00. The doctor just told us to expect him to be at his low point in a day or two. They kind of parcel the information out to us very gradually.

He actually looks pretty good, he has rested all morning except for one reading of Curious George, and now he is alert enough to watch Thomas the Tank Engine.

He can hardly take a thing by mouth, so it's good he's on IV Nutrition. He is tolerating the mouth care and they just upped his morphine dosing. He'll start getting doses of GCSF tomorrow, this is to promote cell growth, and it's the same drug he took prior to his Stem Cell Harvest.

My aunt Pati is flying in today from Seattle. She has been planning this trip since last summer when Elle invited her (she's her godmother) to her first communion. Everyone's looking forward to that event next Sunday the 6th of May. Elle will receive her first communion with many friends including Michael, Taylor, Kelly and Toni.

Saturday the 28th

The Mucositis has finally hit! It's actually pretty heartbreaking. Hans is now just completely wiped out and sleeping most of the day. He has a lowgrade fever of about 99.0 - 100.0, which is normal at his stage in treatment, and his mouth is completely full of mucous. He has a continuous morphine drip, and also the self control feature. We are supposed to clean his mouth out four times a day, and it seems like it is just going to get harder and harder to get him to cooperate with us as it starts to hurt.

Today the doctor said he still thinks Hans looks pretty good, all things considered. It's just a "brutal" protocol that these kids have to go through. From what I've read researchers are looking into medications that would combat the mucositis, but it isn't standard treatment protocol yet.

Hans got platelets yesterday and he'll get Red Blood Cells today. Today his ANC was 1.

On a lighter note...My mom has been making Hans the coolest shirts! When he switched from the central line to the PIC line, he couldn't even take a shirt on and off without being unhooked from the IV. During the 4 straight day Chemo the nurses hated to unhook him. So, my mom has made about a dozen white t-shirts that open with velcro tabs under the arm. The nurses were totally excited that they never have to unhook him now. I'm happy that they work and match with everything. (He mostly wears PJ's in the hospital.)

Elle just had her last soccer game today. She just called me to say she got to play forward in two quarters and scored a goal in the first. Go Cheetahs! I went home last night to see our new carpet. It looks great. We put it in b/c it was recommended in the Bone Marrow Treatment Protocol. Hans will have such a nice cozy home to come back to. Can't wait!

I feel so strange leaving the hospital without Hans, but I know that Kevin takes good care of him. I got back the other day and the nurse was commenting on what a sweet and caring daddy Kevin has been through all this...

"Day plus one"

Hans is still holding up alright one day after transplant. From here on out they refer to his time line as day plus...however many. I guess tomorrow is the mark of the start of the "worst" of the side effects. His ANC was 5 today. It still feels as if we are somehow skating through this and bypassing the worst of the worst. Today Hans is very quiet and solemn. He isn't drinking or eating at all, but they did start him on TPN last night and said that he could stay on that for up to six weeks.

Dr. Krance took a look at him and said his mouth sores are looking a little worse. Hans was looking at him very intensely with his crossed legs, and the doctor said, "he's going to be a philosopher." His Oncologist, Dr. Russell, dropped by to check on him today. We were also touched that two special nurses from the 9th floor have dropped by as well - Natalie and Randa.

Hans perked up a bit when Grandma Stephanie brought over Tyrone, a cute little Robotic i-puppy with remote control. He seems to prefer Christmas movies, so we're watching lots of Elf and The Grinch. He is enjoying the present-a-day program Roxie has him on. It seems about all he can do to get one little gift open, you know, a deck of cards, or package of stickers, then he's kind of wiped out.

It was so sweet, last night he had fallen asleep before we had said our nightly "I'm thankful for..." prayer. He woke up at about 4am, and looked at me and gasped, "We forgot to say our prayer!" Hans is usually thankful for very sweet things like his capri suns and his cocoa puffs, but then he'll occasionally knock me out by saying something like, "my mommy and daddy are so proud of me for getting all better," or, "mommy takes such good care of me."

His favorite book these days is Curious George Goes to the Hospital. We read it at least once a day! (Thanks, Megan and Phil!)

That's the update for today. We're just hanging in there on the 8th floor!

Thanks, everyone, for all your thoughts and prayers.

Lara

Today is Hans' Big Day!

Hans received his stem cells today. The whole process was really very quick. It only took about 15 minutes to infuse the two small bags of liquid gold! They had been collected back in early December (they were his own, collected through a pheresis). They were frozen in a preservative and stored at Gulf Coast Regional Blood Center. The smell of the preservative is quite strong. We thought it smelled sort of like creamed corn, but then I realized it smells more like Twin City Foods(in Ellensburg) when they are processing corn. It had a strong taste to Hans going in. He almost immediately gagged and threw up when the infusion started. Now we just have to wait for the stem cells to find the bone marrow and set up their blood cell making factory. The doctors told us we could expect to be inpatient about 12 – 14 more days. They will closely watch his blood counts, particularly his ANC – a component of his white count. I couldn’t believe it, it dropped dramatically from 2500 yesterday to about 560 today. Generally, when his ANC is above 1000 they feel he is reasonably able to fight off infection. They expect it to drop to 0 and stay there for about a week plus. During this time Hans will be very susceptible to infection, so we have to be very careful and limit his visitors. We are told that he can go home once it has come back up to 500 or higher for 3 consecutive days. He is also expected to experience one very serious side effect of the chemotherapy - mucositis, which includes painful mouth sores and possible irritation of other mucous membranes.

Hans has still been holding up okay. He has what one doctor referred to as a chemical burn on his diaper area. This is from all the chemicals excreted in his urine. He is using a special aloe-based gel. The burn doesn’t bother him much, except for when I apply the gel. Hans got a bit of a fever yesterday – he briefly hit 101.0. We’re glad it’s back down to normal range. He’s still feeling a bit pukey and not eating much, but he should start on TPN (IV nutrition) by tomorrow. It just seems that when Hans is really sick he just gets very still and quiet – he just gets through it. It’s remarkable to me that he has already developed this effective little coping strategy. Thanks to all of you who are keeping our precious little boy in your thoughts and prayers. Hans’ buddy Patrick has been pretty sick here on the unit. He is finally starting to feel a little bit better now that he is one week out of transplant. I think he could use our prayers as well.

Lara

Hans and Petey

Here is a picture of Hans and Petey, the big dog he got from His Grace Foundation upon admission to the Bone Marrow Transplant Unit.

His Grace Foundation Taking Care of Us on the 8th Floor

I wanted to let everyone know that we, along with the 14 other families here on the Bone Marrow Transplant Unit, are being well cared for by a special foundation called His Grace Foundation. This organization was founded after a little girl named Gracie Kiltz was here with her family. Her family was so touched by the support and aid they received from their friends and family that they’ve made a commitment to provide similar support to all families going through the difficulty of receiving a Bone Marrow Transplant. The Foundation is specific to Texas Children’s Hospital.

Among other things, His Grace provided us with an enormous welcoming basket filled with useful items during our stay here, they cater two brunches and one dinner for the families on the unit each month, they cater a meal on the day of transplant, they provide us with a parking pass that allows for in/out privileges (parking here at TCH is $10 per day), they give us a shopping list and shop for items we need up to $25/week, they also provide us with an 800 minute phone card each week. Additionally, trained volunteers are able to provide childcare in order for families to take a break or attend important family/sibling events. On top of all that, there is a massage therapist who volunteers his time to the unit on a weekly basis.

The Foundation has really impressed me with its committed volunteers. I wanted everyone to know it’s here in the event that you or your service group are considering a new place to share your “time, talent and treasure.” Or, perhaps you can get your company to sponsor you for their major fundraising event – the golf tournament. This year’s event just happened and they raised about 95K, you can always join ‘em next year. Hopefully Kevin will be out there!

You can find out more about His Grace at www.hisgracefoundation.org. The website is really worth checking out! It automatically pulls up a video filled with families going through BMT. One of the kids on the video is Carlie, our neighbor in Indian Springs who is also battling Neuroblastoma. Her dad is on the video, too.

His Grace Foundation has made our stay on the Bone Marrow Transplant Unit notably more comfortable and bearable. These volunteers are amazing!

Lara

PS We are here on the unit with children who have yet to find an acceptable Bone Marrow match. You can find out more about becoming a possible Bone Marrow Donor and saving a life at www.marrow.org, or by calling 1-800-MARROW-2! (I just read about that in His Grace Foundation website.)

Chemo is Complete!

Hans has completed his 96 hour chemo drip. It was pretty exciting that they just took down the last of four 24-hour bags!

Hans is set to get his stem cells in two days, on Wednesday April 25th. He is still coping with all of this okay. He is feeling a little pukey, and is having trouble keeping things down. But for the most part he's not that interested in food, just taking sips of his drinks. They'll start him on the IV nutrition in a day or two.

He has had a bit of fever, but so far that hasn't even made it past 99.6, so he's doing good that way too! Way to go, Hansie!

Hans in the news

Hans loved the visit with Race Driver and his fireproof suit! You can double click on the picture and it should get big enough to read. This is from the April 20th Houston Chronicle page B1.

So far, so good!

Hi all,
Just a quick note to say that we're almost 36 hours into the 96-hour continuous run of High Dose Chemo. So far so good. Hans is eating pepperoni pizza as we speak. His appetite has been as good as usual, if not better, and he's holding out just fine. The doctors are giving me looks of warning, as if to say, he'll be hurtin' soon enough. But we just figure each hour he continues to feel well is a bonus blessing.

I'll keep you posted!

That's all for now!
Lara

Hans Yesterday

Here is a cute shot of Hans yesterday, while watching SpongeBob SquarePants. He's pointing at the TV saying, "Look mom, he's a girl." SpongeBob was dressing up like a French Maid...

Anyway, he's been relaxed and fairly healthy this past hospital stay. You can see his hair coming in. It'll all fall out again, but will grow back quickly.

Bernie, thanks for meeting up with us Yesterday, and brining the huge banner from Little Saints. (Each student at Hans' preschool did a piece of art and their names are all on it!) I think I can hang it up across the top of his windows. It's neat!

Hans with PBJ

This is Hans in the recovery area of radiation. As soon as he'd wake up he'd eat two PBJ's. Here he is with Dr. Framberg and Nurse Peggy. They were somewhat surprised that Hans wouldn't wake up cranky.

Hans with feet up

Here's Grandma Stephanie admiring the kicked-back, relaxed hospital Hansie.

Hans and daddy at the fire

It was very chilly here Easter weekend. Kevin lit the fire on Saturday night and Hans had to give him a big hug of appreciation.

Elle at the art show

Last Thursday, I was able to sneak away from the hospital to go to Elle's school art show. Here she is with her Texas Longhorn!

Me and Hans on the train in Hermann Park

We went to the zoo on Good Friday. Hans was a little pooped out, but it turned out to be the perfect day for an outing. Good timing too, we didn't know he'd be getting admitted the following Monday. We rode the train through Hermann Park. We weren't the only ones with the idea of going to the zoo that day. We ran into the Pelletier's and the Jenks from The Woodlands!

Hans and Grandma Kathy this March

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