The Next Phase

Hi,
I haven't written in a couple of days because I wanted to make sure the plan was in effect before I updated everyone.


Since Hans has no evidence of disease he can now go into what is called the Maintenance Phase. Typically for Neuroblastoma, a child would go on 6 months of Accutane to prevent relapse. However, Accutane is pretty rough on the kidneys and since Hans had a poor kidney function test, we had to find an alternative. Hans was given a prescription for Etoposide, a chemotherapy, he should be able to take it in pill form. Over the weekend though, we found out that it's hard to dose Etoposide right for someone Hans' size. The docs are working on it - hopefully by the end of the day we'll have the medicine in hand and we'll get him started. Our neighbor, Carlie, also took Etoposide for her maintenance phase. Her mom, Charon, said that Carlie had to work through a couple of problems with Etoposide. At first, the dose was too strong and her blood counts dropped low and she went back into the hospital with fever. I'm sure we're not "up" for that again. But, here we go! One thing we've learned is that all kids are different. The idea is to find a low dose of Etoposide so that the kid can go about normal life. Our Dr. told us that Hans' hair should still come back in, but Charon said that Carlie's hair initially fell out with Etoposide. I suppose we shall see!


The good news is that Kevin and I have been amazed with Hans. His energy level seems to have soared back up to where it was at last summer. He's funny and amazing. Four years old has always been one of my favorite ages. The kids just say funny things and have such magical thinking. I am happy to be able to enjoy the charms of this age here at home and not from the confines of the hospital. Hans has gained some weight now, he's up to about 27 pounds (from 23 pounds just out of transplant)! He appears to be growing a bit too. He's just over 93 centimeters - throughout this whole treatment period he has measured anything from 89 to 92.5 centimeters. It's really nice to see some growth since he hasn't grown at all this whole year. He's pretty tiny for a four year old. But, somehow it just enhances his cuteness and lovability for us.


Other good news: We get our Elle back tomorrow! Yay! My mom and Elle are coming in on Tuesday afternoon. Elle has been having such fun up in Washington seeing all our family and old friends that I'm not at all sure she is ready to come home. My mom will stay a week, and I'm grateful that her trip coincides with the Renal Appointment on Wednesday. It's always helpful for me to have another set of ears when getting a lot of new information.


Thanks for all your comments! It was really fun to read them all! PL - I think Hansie's hair is looking either dishwater blond or light brown - it's sort of hard to tell when there is so little of it. Even less of it showed up in the sun. I think I did a little overkill - I wanted to take a photo in natural light so you could see hair and eye color (Elle's request), but it's pretty washed out.


Lara

Hans is Cancer Free! - No Evidence of Disease!

Wow - we got the good news in an email from our doctor last night. Hansie is Disease free!!!! Yesterday's Bone Scan and Friday's Bone Marrow Biopsy came back "lovely". I was so thrilled last night when I got the news that I found myself running into the back yard to tell Kevin. It was the news we have expected to hear, but to actually hear it was such sweet relief. Whoo hoo, yipee and hallelujah!



As we are learning though, Hans keeps us on our toes. Yesterday Kevin saved him with his hpyervigilance. Hans was extra sleepy waking up - and I just took advantage of the opportunity to unload the dishwasher and get the day going. Kevin, though, realized that Hans wasn't quite"with it". Hans was fully awake and conscious, but really on the verge - a bit cold and clammy and nodding off. Normally, he wakes up raring to go/hungry in the mornings. So, I took his blood sugar and, sure enough, it was very low at 26 (normal is 80 - 120). We did everything we were instructed to do and luckily he was awake enough to drink and eat and cooperate. We got the fellow-on-call on the phone and once again reached Dr. Rainusso! Kevin gave Hans his emergency injection of solu-cortef, and Dr. Rainusso instructed us to come right in. This time at least it wasn't in an ambulance! And, at least we were already planning to be there for the Bone Scan. We both went in, I rode in the back seat next to Hans encouraging him to drink juice and suck on a lollipop the whole way down so he'd stay with us.

They kept their eye on Hans all AM and he seemed to have stabilized. He sugars went up to 201, and then came down to a more normal 130. We were able to complete the Bone Scan, and head home. Hans had been coming down with the slightest symptoms of a cold this week. The doctor revised our "action plan" for Hans, as it was, we were to triple his dose of hydrocortisone in case of fever, vomiting or other severe symptoms. Now we're learning that we need to lower our threshold and increase his dose even with more innocuous symptoms, like the sniffles and a nose that's running clear. We'll be giving him triple his steroid dose for 72 hours. Hopefully, in the future we'll be able to prevent another dip in his sugars! Live and learn, I guess...

Patrick also found out yesterday that he is Cancer Free! Colby had relapsed a while back, and he found that his tumor is stable. From what I understand, stable is good, but I'm praying for that tumor to do a disappearing act. Carlie will complete scans after a family vacation. We're praying for SHRINKAGE!

You can see from the picture above that Hans' hair is coming in. He loved the cool shades he got from his auntie Anna and Uncle Matt for his Bday- he also loves the Shrek the Third soundtrack. It was perfect - Kevin and I got him a boom box for his room. He's back into "shakin' it" and dancing the bear!
Lara

Quiet Weekend

We are having well-deserved quiet weekend! We got through the Bone Marrow Aspiration. The whole process was pretty rough on little Hans - he just wasn't up for the not eating/waiting. When they put in the IV yesterday, they got a bad blood draw, so they had to re-stick him. At that point I had had it too. When the ladies from the lab came around, I told them they could sitck him, but they better be the best, because they only got one chance. They looked at each other and said, "Reggie". They went and got Reggie, he came in and drew the STAT sample in one shot. Poor Hans. He had a lot to go through last week. I am so pleased we just have one scan to go. Hans has traditionally done well for the Bone Scan, and he doesn't have to fast for it.



We have just been catching up on chores we didn't stay on top of during the week and trying to relax a bit at home and catch up on sleep. I am happy to lounge around with the new H. P. book, and Kevin is keeping up with the Tour de France.



Hans is sort of hobbling around like a little old man today. For the Bone Marrow Aspiration they insert hollow needles into his hip bones. I think he must be a little sore today. But, he doesn't complain of pain, and we haven't been able to convince him to take any Tylenol.



We'll keep you posted of what we learn next week.



Lara

So Far So Good!

We are so relieved and so pleased right now! We met with Dr. Russell and heard the good news: CT looks "beautiful"; MRI looks "fine/nothing concerning"; she had eyeballed the MIBG we went through today and it looked good to her, the radiologist will review it later. I can't yet say that Hans is NED, because the MIBG still has to be officially reviewed as well as tomorrow's Bone Marrow Aspiration, and next week's Bone Scan. Dr. Russell actually said that she didn't expect to see anything based on the information she has at hand. I asked Kevin how he felt (he's been a nervous wreck) and he said 'awesome' - for about 2 1/2 months. Ugh - we have to go through this every three months. And, the problem is that Neuroblastoma is tricky and it likes to come back, so it always could. It could have already been back TODAY. Anything goes. I feel extremely grateful for the good news we have today.



We heard that Patrick also got some good news today. Sweet!



Like Dr. Russell said, now it's just about managing all the side effects. We meet with her next week and we'll discuss Maintenance Phase, then we meet with the Kidney Specialist on Aug. 1st.



Thanks, as always, for your prayers, well wishes and support.



Love, Lara

Either "Ignorance is Bliss" or, "No News is Good News"

So far Hans has had an MRI on Monday and a CT scan today. The MRI was a little rough, but the CT Scan was a breeze, Yeah Hans! He got injected today with a shot of Radioactive Medicine for his MIBG scan tomorrow. We haven't heard anything back yet about Monday's MRI or today's CT scans. We'll meet with Dr. Russell tomorrow afternoon to go over everything thus far. Hans will then have a Bone Marrow Aspiration on Friday and a Bone Scan next week. They did push back his Bone Scan so his kidneys won't have to work so hard processing the Radioactive Medicine in his system. We saw Patrick, as well as another little guy, Colby, in Nuclear Medicine. Colby is my hero because he was diagnosed with NB one year before Hans, but he's just a month older than Hans. He has battled some of the same side effects. Thanks for your prayers for all of our boys.



Hans and I had five hours to kill today so we walked up to the zoo. Hans wanted to check on his elephant - baby Mac. Baby Mac is doing just fine. It looks like they are building a large new area for the elephants. This is nice, but it looks like they're taking over the alligator bayou, which I always really liked.



It was a very successful Birthday Weekend. Hans loved his party at Chuck E. Cheese. (Erin, your comment was right on the money.) He downed three pieces of Pepperoni Pizza. All of us were totally impressed with our little 8 year old buddy, Michael Smiley. He took it upon himself to very carefully escort Hans through the climbing structure, and it was like he appointed himself Hans' special buddy for the day. It was adorable. Hans has now lit candles on cake or leftovers at least half a dozen times. We just sing to him whenever he wants to hear it again. I'm a little worried about the birthday kid at the next party Hans goes to. I think he thinks he's in charge of blowing out all candles, everywhere.



Elle and Joey left late Monday. I hope she didn't cause him too much trouble, but I know she's having a blast. It was hard to say goodbye, but I know this was the perfect timing. She's just missing out on a LOT of scans down here. She's now with her Grandma Kathy/Grandpa Dale in Ellensburg. She'll also hook up with Grandpa Dean/Grandma Diana and Auntie Anna/Uncle Matt this weekend. Roxie flew out last night. It was fun to have a house full and to have so many helping hands. It's sort of quiet around here! Hans was mad at me today because I told him "no" about something. He started crying and said, "I need my sissy 'a make me feel better."



Elle - you're missed down here - but have a blast for all of us!



Lara

Birthday Weekend Pictures

GFR Results

Hi. We found out late Thursday that the GFR results weren't great. We don't know exactly what all this means yet. We are being referred to a kidney specialist and we'll just have to go from there. Little Hans is just special/complicated I guess. Our doctor assured us that it isn't horrible. It's nothing like he'll need transplant or dialysis at this point. The function could even get better. We just need more information. I dropped off our third attempt at getting them a clean urine sample yesterday, they needed one. They are also waiting on some of the blood work to come back. After this week we'll learn a lot more.

They do want him to avoid a full CT scan (the kind where he has to drink the contrast). So, they squeezed us in for an MRI on Monday morning. Roxie will still be here and will accompany me to get him through that. I guess they are going to go ahead with a head/chest CT, and the Bone Scan and MIBG scan. We'll have a ton of scans to review. Of course, I'm praying that we have just heard the worst news. Please pray with us for clean scans. Our doctor has shared that there is nothing to indicate tumor thus far. It will be HUGE if the scans are tumor-free. Patrick has his scans along with Hans next week. What a joy it would be if both boys were found to be NED/cancer free!!!!!

Meanwhile, we've been busy having a fun birthday weekend for Hans. We just let him open his packages as they arrive. It's all about Hans! He got to have his "Party" at his daddy's work yesterday. We all met Kevin for lunch and then celebrated with a small cake and candles. He now considers himself four! We're sort of surprising him with Chuck E Cheese tomorrow. He could never get on board with a birthday party plan other than "daddy's work", so we're hoping he rolls with it well tomorrow.

Lara

Tuesday/Wednesday at TCH

Oh Gosh - I'm tired - but I think I promised an update from yesterday and didn't get to it. Yesterday's visit was fine. Hans lost some weight - he weighed in at 11.2 kilos, but it makes sense to me. I think he was truly bloated with that last weigh-in of 12.0. At least 11.2 shows a general trend toward gaining a bit of weight - but not an unexpected amount. His counts are fabulous. His Hemoglobin is 12.7! The stem cells are fully functioning now. That's the highest I remember it since we've started this whole process. I found out my Hemoglobin is 12.8, so I think Hans is doing very well!
Good news first: the blood work they did on Friday showed absolutely no indication of tumor presence (they test for some salts, which are elevated when tumor is present and growing/dying in rapid cycles~probably a really poor version of the truth ~ but that's roughly how I understand it). They are going to start him on shots twice a day to get his diarrhea under control. Good news for me: Kevin is the shots guy. We'll probably start it tomorrow since the delivery hasn't arrived yet tonight.
So-So News: The urine sample he gave Friday was contaminated. We tried again and failed to get an adequate amount, so a urine sample is still pending. However, I guess since there is a question of what's going on with the bladder they wanted to do a STAT GFR or Kidney function test. They had me turn around and come back down this am at 8:30. I didn't handle this news so gracefully when I got it at 5pm yesterday. We had plans! But, thanks to Dana, Elle was able to stay in The Woodlands and go to Basketball Camp and hang out with Cole and baby Clay before and after. My dad always used to say, "Sometimes you need a favor from a friend". I hope there is no lifetime limit. Thanks to Carmen, too, who watched my kiddos yesterday while I spent some 'luxurious' time to myself... in the dentist's chair! UGH!
So, we have completed the GFR and will await the results. The prayer is for normal kidney function. Some of the chemos on this protocol can cause kidney damage, so we are aware of the risk. I hope they let us know the results soon. Hans was an amazingly good sport today! The test takes 5 hours and he had to have an IV inserted. I can't say how proud I was of my handsome little guy today. His hair is just starting to come in. It looks blond right now. His eyes somehow look bigger than they ever have. They change color everyday. They are pretty much a sea green, but can look grey or blue or green depending on what he's wearing.
TCH has a "Child Life" staff who helps explain things to kids and provide distraction. I must say that Breanna went above and beyond with us yesterday. She played I Spy with Hans for a long time, helped distract him through both a blood draw and a shot, and also helped me get a lot of information from both the pharmacist and the NP. Breanna- if you happen to read this - I think I would have lost it without you yesterday, thanks!
Sorry I'm rambling so. We have no appointments until Monday! We're actually really looking forward to the weekend. Roxie is coming out, and so is my cousin Joey. They're here to help celebrate Hans' big 4th Birthday! Then, Joey will escort Elle up to Seattle where she'll spend two weeks. My mom will fly her back down and stay a week.
That's "all" for now -
Lara

Another Cool Trip

Hey - we just found out that the charitable owners of the Squirrel Creek Ranch have invited the Neuroblastoma families out for a weekend in September. Our Nurse Practitioner said that historically they haven't invited the little ones, but that she pushed for it and they gave in this year. I found this site online with a news clip on the ranch from last year. It's pretty sweet! It's like Elle says, "only about one half of one percent of cancer is good...Costa Rica, Chicago and then the ranch." I guess this family has children that have been treated at TCH Cancer Center, so they dedicate four weekends of the year to hosting children and their families. Pretty generous. http://www.txccc.org/content.cfm?content_id=1385 We'll give you an update after tomorrow's office visit.
Lara

Hans and Elle...

getting wet at the cool fountain at Millennium park. You may have noticed Hans almost exclusively wears pajamas these days. We just figure - whatever works!

Lara, Elle, Hans and Cousin Erin

Here we are at the Magic Bean (??) in Chicago's Millennium Park.

The four of us at Buckingham Fountain (I think) in Chicago

Dr. Russell trying to share popcorn with Hans

We waited for 3+ hours for our flight to Chicago with Dr. Russell. Hans is always a little bit hard on her, but we know that he loves her deep down, just like we do!

Gaining Strength - Back on the Bike

This was taken just before Hans wound up back at TCH with Hypoglycemia. It is pretty encouraging to see him building up his strength. I must say - when we first brought him home from BMT it was much different than bringing him home from all the other Chemo's. It really took a lot out of him.

He continues to build strength and stamina. His moods are much better. He is returning to a much more normal life! Today he swam for an hour and a half straight. He was really taking dips and going under. He kept telling me to "get back" so that he had farther to swim to me. Also, last night at the park, he was screaming "higher" after each push. It feels like we're getting the old Hansie back. Hans has always been pretty brave and bold. We were pretty sure we had a little extreme athlete/thrill seeker on our hands. He just tends to leap before he looks. Two summers ago he got away from me at the community pool, jumped right into the deep end, and sent a lifeguard (and her mother) in after him! Last summer he took lessons and got pretty good.

good news on impromptu ultrasound

Hi - So, Kevin and I had had a growing feeling of uneasiness since Tuesday's appointment and weight gain. We were also noticing that Hans' ribs were bulging out (not unlike they were in early October). We called the clinic on-call-doc on Wednesday and got Dr. Rainusso. We were actually beginning to fear that a tumor was coming back (in a big way) in Hans' belly. Dr. Rainusso was very responsive and instantly called Dr. Russell who was attending on the 9th Floor. They arranged for us to come in for an ultrasound to get down to the bottom of the situation. We went in Friday morning. It was pretty scary. I told myself how brave I was all the way down to the clinic. I was shaking like a leaf when they got him into the scan. But, to my completely delighted surprise the tech shared with me that she couldn't see anything but excess stool and gas. So, essentially, Hans was just bloated. The Radiologist also spoke with me. She was actually the same one who had reviewed the January and February CT scans. She knew his history. I also kind of think of her as "saving" him in a way. She detected the ambiguous tumor that otherwise went undetected. She said that the stool and air obscured part of the view in this ultrasound, but that if a large tumor was causing the stomach distention, they should be able to see it. So, we don't have a "no tumor present" reading - just a "large tumor not causing presenting symptoms" reading. Which is perfectly fine with us. We then went up to the 14th floor for lab work and stool/urine samples to be done. They did detect some signs of a possible bladder or Urinary Tract Infection. We'll see what those numbers show. Sadly, Nathan lost his battle to cancer early this morning. I am shocked at how quickly everything changed for him. I think it was just three weeks ago they were looking to be sent home. They had purchased a travel trailer and it was set up not far from TCH, so that they could stay close by for the coming months of BMT check ups. It's really impressive that the medical system consented to send him home for his last three days of life, where dozens (if not hundreds) of friends and family were able to visit. Serenity will be there waiting for him in heaven. St. Simon and Jude on Glen Loch is holding a blood drive tomorrow, Sunday July 8th, until 2 pm. You need not be a member of the parish to give blood. Lara

Worth Posting Once Again, Nathan and Hans in the News

Hi guys-

Just wanted to repost this picture from the Houston Chronicle from a couple of months ago. The top picture is Nathan Cosby and the bottom picture, of course, is Hans. Nathan passed away at 5:45 am this morning.

Listen, as Lara posted earlier, Nathan was a star athelete and a star human being. Nathan wrestled up a grade from 8th to 9th grade and placed 3rd in the state of Oklahoma. When you think of future Olympians, you think of Nathan....Seriously. He was a super awesome athelete. We had the privilage of living with Nathan for a month at Texas Childrens Hospital. To watch him do his physical therapy, through a lot of pain, was inspiring. He was one of those skinny, lithe bodies that exuded strength. I can only imagine him moving and dominating on the mat.

Love you Nathan.

Kevin, Lara, Elle, Hans

Nathan's Site-Correction

http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=nathancosby



Here is the corrected site for Nathan. When I tried accessing the link it said, page not found. Hope this helps you all trying to read Nathan's story.



Carmen

Prayers for Nathan

I have been following Nathan Cosby's website. He was another buddy from the 8th flor BMT. The past weeks have taken his family through much news and many changes. He was essentially rediagnosed from his original diagnosis. He has been airlifted back to Oklahoma and he is now in the PICU in pretty serious condition. Please extend an extra prayer for him tonight. You can look at his website, or post a comment, www.caringbridge.org/visit./nathancosby
His story is amazing. A year and a half ago he wrestled up a grade level and took 3rd in OK State for 9th graders, as an 8th grader. Thanks for remembering him tonight. It is wonderful that the medical community arranged to return him to OK for the support of friends and family.
Lara

Office Visit

Hi -
Hans' appointment today went just fine. He actually gained .9 kilos or just about 2 pounds since last week. I think this correlates well with the number of ice cream cones he has eaten over the past week. But it's a little bit freaky! We are just a bit nervous about the upcoming scans - so of course we're hoping he's not growing something else inside that belly to account for the sudden weight gain.
His counts were fine and he handled the appointment reasonably well. I guess his veins aren't "very good" despite the fact that he is very well hydrated. This does make it a little unpleasant to go in for counts, but really that is the least of our concerns.
Happy Fourth of July to you! Enjoy a well-earned day off!
Lara

Home from Chicago

Hello,
We made it to Chicago for the Children's Neuroblastoma Conference from Thursday - Sunday. At first I thought we were crazy to be traveling so quickly after Hans had an emergency ER Ambulance Ride. But, all went relatively well! First off, we wound up on the same flight as Dr. Russell and passed the three hours the flight was delayed together. We were actually seated right next to her. It was pretty cool - but I did feel for her, that despite flying alone without her kids, she was flying with mine! We were able to ask her tons of spontaneous questions and get to know her even better. It was a nice perk.

For the most part Hans went with the flow. Kevin and I took turns hanging out with Hans/Elle and going to the talks and, collectively, got to listen to everything. Mostly speakers were presenting their NB research. Our doctor was one of several doctors giving a talk. I do think it's about as early in the treatment process that we would have been ready for something like this. It was a little bit overwhelming in some ways - encouraging that there is so much being done, confusing in that we'll come to a point (like NOW) where we have to make some tough choices regarding Hans' treatment, and just extremely emotional. I guess we were really face to face with the fact that Hans just has a really rotten, really aggressive cancer. He has the most advanced stage of this cancer, and researchers still have a long way to go to find super-effective long term treatments. We met many incredibly strong "angel parents". Their children lost their fight to Neuroblastoma. They come every year for a grief workshop. I can't do justice at describing the compassion, grace, and courage each of them exhibited. I hate that I didn't get to meet each one of their beautiful children.

I felt deflated as one doctor explained to me that US Government research funds for this cancer have dropped into the single digits. I am really struggling with the fact that my government is not doing a sufficient job funding research efforts to fight this (and other) pediatric cancers. I think I'm actually taking it extremely personally. There is a grass roots parent effort called Lunch for Life to get the funds the researchers need very specifically for Neuroblastoma Research. You'll be hearing more from me about this later - on Lunch for Life - just the idea that everyone who knows Hans, or has heard of him through you, gives up their lunch money for a day to support Neuroblastoma Research. I'm looking at his diagnosis anniversary (10/07) to do a fund drive. I just keep mentally going back to that Bumper Sticker that reads something like...."It'll Be a Great Day When (fill in the blank) and the Army Has to Hold a Bake Sale to Buy Bombs." I'm not going to bake anything, but I'll be asking you for your Lunch Money this October to try to save my baby. Thank you for your support. I'll appreciate it if you get the word out to everyone you know. My goal is to have 1,000 people donate their lunch money for a day in Hans' honor. More information will follow in the coming months.

Okay - so it's a long post - but it has been a while. We actually had a little bit of FUN in Chicago. Kevin's cousin Erin lives there. She came and picked Elle up on Saturday and they went to American Girl and other stops downtown. When the conference concluded on Saturday night, we all went out and hit the town. Interestingly enough, Hans was happy as a clam to go out and about in the city. He loved dining in the bar of a crowded little Italian Restaurant. We were waiting for a table and when they called us out to a nice little patio table, he dug in his heels and refused to leave the bar. So, he stayed there and enjoyed two milks and a full meal in the bar. We had fun. Sunday we met up with Erin again and did the Taste of Chicago in Grant Park and also checked out Millennium Park. The weather was beautiful. We were all truly impressed with the City of Chicago. It's clean and pretty and compact and it has a really big lake!

Okay - I'm not usually up this late. We're going in tomorrow for labs, an office visit, and a weigh-in. I'll let you know how that goes. Also, we've got Hans' scans coming up in two weeks. We are beginning to feel the anxiety creep in.

We were in Chicago and weren't able to attend Serenity's services, but I heard they were very beautiful. Leigh Ann threw her a final Tea Party.
Lara