Scott McDermott and his Wife, Bethany

This is Scott McDermott and Bethany on the day of their Fundraiser for Hans! Thanks again, guys!

Prayers for Serenity

Today our little friend, Serenity, is going through her third and final Bone Marrow Transplant. She is an amazing little girl with a lot of spunk. She has managed to befriend and endear herself to every single soul on the BMT Unit. She has been taken care of by the nicest lady in the world, Leigh Ann, who has become her legal guardian and is out on FMLA to get Serenity through this tough step. She has leukemia and her marrow is hard to match, so she will be using cord blood today. Thank you for saying an extra prayer for this little girl today. (Expecting Mamas: Donating cord blood can save lives!)

Other NB kiddo updates: Our friend Patrick gets to return home to Lake Charles, LA now, and just come back to Houston for weekly check ups! I am praying that they will still see improvement in his hearing. Carlie and Will continue to do well, and Roman is doing his Radiation Treatment. Another little girl, Chloe, was expected to undergo a 12-16 hour surgery several weeks ago, but it was complete in just three hours! If you're available - save the date of July 14th for a big fundraiser for her family. Their insurance will cover only 300K of the estimated 700K cost of transplant. It's in Webester, TX!

Hans seems to be improving over the course of the weekend. He had been pretty low-energy all weekend, but yesterday he just seemed a little bit better. It was the first day that I felt like we'd make it all the way to Thursday without an extra Clinic Visit. He is eating well - his requests have included smoothies, lemonade, eggs, spaghetti, milk, juice and chips, as well as more chicken wings. He doesn't eat large volumes of food, but does eat all day long. He is very thin now, so I'm pretty much getting him whatever he asks for. He's starting to be more and more active. I took him in the bike seat and we had gone ten miles and were almost home before he started complaining! I am hoping and praying for good counts at our visit tomorrow.

We got the nicest surprise in the world on Friday. We got a letter from Kevin's old buddy from growing up in Ellensburg, Scott McDermott. He and his wife Bethany and her study group at WWU had done a fundraiser for Hans! They sold concessions at a little league tournament in Lake Stevens, WA for him. I think Kevin scanned in the photos, maybe I can post them tonight. It was heartwarming and surprising! Thanks guys.

It's 85 and getting humid in Houston. This is the last day of school for Elle! And, yes, mom, she did pass second grade! Ha Ha.

Lara

Saturday Morning

Hi,
Hans' visit to the clinic yesterday went pretty well. His platelets are actually starting to come up and his Hemoglobin and white count/ANC are holding their own. This all means that his stem cells have "engrafted" - the ultimate goal of transplant. Awesome news! So now Hans will go back to the regular Cancer Center Clinic to his Oncologist for future visits. We've "graduated" from the Bone Marrow Transplant Unit. His electrolytes were sort of okay as well, his sodium was outside the normal range by only one point and his potassium was perfect. The only numbers that aren't totally cooperating are his liver panel, they're a bit high. I've been instructed not to worry about this. So I'm not! The high numbers might be reflecting all the meds and TPN Hans has been on. Now Hans is totally off TPN, and the Fentanyl patch will not be replaced. He is down to his maintenance dose of his steroids and is not on any additional medications! We have an office visit with Dr. Russell on Thursday (no clinic 'til Thursday), and hopefully the liver panel will look more normal. That's my current prayer. Thanks again to so many of you how have kept Hans in your thoughts and prayers. All I can say is, it's working!

Socially, Hans is making slow strides. I tried to take him to the lunch date on Thursday, but he wasn't up for it. He was, however, up for part of the outdoor birthday party. I know some of his old buds were happy to see him out and about again. He stayed at the party for over an hour, and then he was ready to return home. I was pleasantly surprised, I wasn't sure if he'd even get out of the car. We'll just try to give him lots of opportunities and be supportive of whatever he's comfortable trying to do. This is a major adjustment for him, and I'm not sure he knows what to do. He told me this morning that he wanted to go to the clinic.

Have a Happy Safe and Fun Memorial Day Weekend!

Lara

Another Good Check-Up

Hi,


Hans went into the clinic again for counts. Everything was okay. His platelets aren't kicking in and really taking off yet, but I think that's pretty common, at least he hasn't needed any transfusions. His elctrolytes were actually normal for the first time in many many visits. That was awesome. He has another visit at the clinic on Friday; hopefully we'll be able to stop TPN completely and that may be the end of the Fentanyl patch as well.





His moods have been a little wild. He seems to need to throw temper tantrums that last 45 minutes. He only had two today so that's good. Any good advice out there on dealing with temper tantrums? I always look forward to age 4 as an easier age to work with. I'm hoping that plays out this summer. Hans' fourth birthday is on July 15th. His latest plan is to have his birthday party at daddy's work. It's original!





He got to hang out with Carmen at the swim practice. It was really sweet for me to see him warm up to her again. He kind of has a normal schedule this week. We're going to a restaurant with friends tomorrow for lunch, and then to a birthday party. I'm not sure how he'll do at that one, since it's a splash party and he can't swim or get wet yet, but I'm willing to give it a shot.



That's all for now! I'll try to post some pictures of my cute little baldy soon. He lost all that hair and he's as bald as a cue ball now!

Lara

Hansie's Okay!

Hans had another check up today and his counts are still okay. Even his electrolytes are okay, so that is fabulous. They are going to wean him off of his TPN! Whoopee! He really doesn't like being "hooked up" at home, so it'll be really nice for him to be free!

He actually got out of the house this weekend a little bit. We went out for part of the Sharks Swim Meet. Hans got to see his buddies Ryan and Michael. He's just a little hesitant and seems to be more in the medical realm. He was asking if he could go hang out with his "real buddy" Dr. Rainusso... He seems to be drawing a line in the sand in his mind. His is looking for his life to return to "normal" after his tubes come out. That's when I guess he feels he'll be free and ready to play with his friends, go swimming, etc. etc. Dr. Russell says that should be the end of June. Just a month away! Sweet! We also went out and picked a few blackberries last night. Hans really loved it.

He'll go back into the clinic on Wednesday and Friday of this week. They are mostly just closely monitoring his electrolytes and hoping his platelets sort of hold their own like they have been.

Lara

Good Check-Up

Hans had a good check up at the Clinic today. Most of his counts were good, it's just his electrolytes that are still a little off. Dr. Carla said that a lot of time she sees this with kids who have had several cycles of chemo, and most of the time it corrects itself. Let's hope that's the case with Hans. For now, they will address it by adjusting his TPN (IV Nutrition). So, he's still on that even though he is starting to eat. It's easier to adjust his electrolytes in his TPN than it is to get him to take oral supplements. He is slowly weaning down off the Fentanyl patch, but it seems to be doing the trick. We're happy he's weaning off high-dose steroids too. It's just a few less doses to keep track of!



That's about it for the update. Other than the exciting news that Elle did make it onto the Sharks swim team. (She was wait-listed for a while and she just got to start the team this week.) I got to go to her practice yesterday. It's pretty fun to see her out there working so hard! We ALL should be on a swim team - it's a pretty serious workout. I'm glad she made the team, because it has daily practices for the first part of the summer and gives her something of her own to go do. She is happy to join her friends Michael and Cassie on the Sharks!

Also - Happy Big 60th Birthday to Grandpa Oscar!

That's it for today - Lara

Hans is "doing dishes" at home

Yeah! We did make it home last night. After I posted my update we had a scary set of labs that showed Hans' potassium to be through the roof. He was immediately hooked up to the HR monitor and all my hopes of home were dashed. Luckily, they ran a stat Potassium lab and the second result was almost normal. There must have been some Potassium in his line that was drawn into the blood sample. It was a little scary, but we were released and home by 7 pm.

Hans is just suddenly doing really really well! He is doing dishes right now (that's one of his favorite at-home pastimes). He has started to eat and has made requests for: chicken wings, "pineapple" cheese (that's what Hans calls Cheddar for some reason...), oatmeal, pancakes, along with lots of whole milk, water and orange juice. His taste buds are still getting readjusted from that last round of chemo and his body is still healing from mucositis, so his eyes are bigger than his stomach, but it's okay.

It was indeed a happy homecoming last night.

Lara

Hans inpatient again

So - I missed a couple of days, here's the update: Sunday Hans got worse and worse and we had a very rough Sunday night with cycles of vomiting throughout the night. I was borderline about bringing Hans into the ER, but then I decided to wait since he didn't have an "official" fever and he had an appointment on Monday. Hans was very lethargic when we got to the appointment- just laying down and not really moving or talking. They drew his labs and found that his electrolytes were very out of whack. We still aren't sure exactly what had happened, but it was something of a "vicious cycle" of coming off morphine making him sick, not getting enough of his Methadone by mouth, not getting enough of his steroids by mouth (which regulate his electrolytes due to his Adrenal Deficiency), and the vomiting was making him dehydrated. Basically, he was a mess! It was a pretty sad to see and a little scary. The thing is, everything was perfectly rectified with fluids, IV Zofran for nausea, a quick Morphine dose and a patch of of phentanyl as an alternative to oral Methadone.

They kept us Monday night, and then, surprisingly, they kept us overnight Tuesday as well. They just wanted to montior his electrolytes and other blood counts closely when they could easily adjust what he needed in his fluids. He is doing a thousand times better. He is starting to have some lively phone calls and making interesting food requests. He is actually eating very little, but I seem to be running around quite a bit to fill his requests (chicken nuggets, pepperoni pizza, cheesy chips, fruit snacks, and popsicles). He has managed to eat a few potato chips today. He is drinking more and more milk and juices, so I take these as good signs.

Hans just recieved red blood cells and we are just waiting for his final lab results before we get our discharge papers. I never wanted to be coming back so soon, but I was happy to be here where they could give Hans the care he needed. At home, he should only have to take his steroids orally. I'm actually quite proud of how well he does with those. It's a blessing since he'll have no alternative but taking them for the rest of his life.

Hopefully I'll write the next post with good news from home!

Lara

Hans at Home

Hans is having a bit of a rough time this weekend. He's detoxing off the morphine. It's a little scary because he's been vomiting more than he did at the hospital and so he's having a hard time keeping meds down. They actually told us we didn't have to worry about his oral antibiotics over the weekend, which is a big relief. They sent us a prescription for an alternate to a liquid for nausea. Now he's got a dissolvable pill that should be effective even if he doesn't take the whole thing. Let's hope it works so we can still get the steroids and Methadone in him.

He's been very restful, just quiet and still, and taking little sips of liquid. They say it's probably mostly coming down off the Morphine that's making him sick now, so he should be over that within the next several days. We have another clinic appointment on Monday. The clinic visit on Friday went pretty well. His counts were good enough not to need blood or platelets. Dr. Carla actually told me we could "graduate" back to the regular Hem/Onc (Hematology /Oncology) Clinic, but I gave her a freaked out look and she said I could have one more visit on the Bone Marrow Transplant Clinic. I said, "Okay." They seem to be pretty good about knowing what to expect, so I need to be weaned off of them, I guess.

Happy mother's day to all the mamas out there. Especially our moms and grandmas - Grandma Stephanie, Grandma Kathy, Grandma Diana, and Great Grandma Jean, Great Grandma Lorraine, and Great Grandma Shirley. I'm also thinking of my Gram Gram and Grammy today, Patricia Daniels and Tynne Cady.
Love, Lara

PS scroll down to see some more photos from the first communion.

Elle on her First Communion

Elle with Mom, Grandma, and Godmother

Elle on Bridge

Lara and Carmen

Home at last!

We are home at last! It is a total and complete whirlwind to transition from a 1-month hospital stay to home, but we are happy to do it. We managed to load two carts full of stuff and ourselves into Kevin's little Golf and make it home last night. The Home Health Nurse met us at home to show us how to run Hans' TPN at home. That went well and our new Home Health Nurse is great! Now we have to stay on top of Hans' medications and be sure we get the right doses in him, he'll be weaning off of Methadone this week and back to his normal doses for Hydrocortizone. Once again, a nursing degree would come in handy - but I think we'll get it down.

We came home and then found Wendy from Little Saints putting up a great Welcome Home sign for Hans. Thanks, it's really neat, and sorry we beat you home:)

Hans is actually doing better at home already. He is up and moving around a bit more, and drinking more. He doesn't seem to have an appetite for foods yet, but the TPN covers his nutritional needs for now. He was happy to see his kitties, but most of all, Elle is happy to have her family back under one roof.

Believe it or not, it's already back to the CLINIC for us, right now, for counts, a check up and possibly Platelets! Alright!

Lara

Time to let their hair down...

Next..Elle cuts the yummy cake! Fun was had by all!

During 1st Eucharist Mass/Elle on Right

It was neat, they let Elle and Michael be together.

Home Tomorrow or Friday

Hans is doing really well today. They have taken him off of all antibiotics and antifungals. The doctors said we should be able to go home tomorrow or friday. They just want to watch his electrolytes for a day to make sure we don't need anything prescription-wise to take home with us. He may need IV nutrition for a little while during the night if he isn't eating enough, but hopefully once we get home he will just pick up where he left off. Usually once he stops getting fluids at the hospital his appetite returns right away. He also will still need to be on methadone for a while since he became quite the little morphine addict. His mouth and GI tract have healed from the mucousitis so he doesn't have anymore pain. Keep your fingers crossed for a return home soon. We are SOOO ready to get out of here.

Kevin

Tuesday the 8th

Hello! Hans is doing pretty well. As I type this Hans and Elle are actually boxing a punching bag here in the room. So, he must be feeling pretty great.

Today his counts were still up. His ANC actually grew to 12,000, and his HGB and Platelets are still good. They took him off GCSF, and in order to get him closer toward going home:

• they reduced his morphine by half and removed the self control feature,
• they added oral methodone to help him wean off of the morphine,
• they are reducing his TPN from 24-hour to 18-hour,
• they are reducing his Lasix (to drain off excess fluids),
• and they are also going to think about thinning out his antibiotics,
• he is taking sips of drinks and asking for food, if not eating.

I feel pretty good about all this. I think some other little kiddo will be needing our room by Friday, and hopefully we can oblige!

My mom and Pati made it back to Seattle okay last night, and back to work today, poor girls!

Last night the floor had the sad event of losing little Marilyn, a 10-year-old BMT patient from Oklahoma. My heart breaks for her family. I didn't even get a chance to meet her, but I wish I had. My prayers are with them all tonight.

Lara

Hans Continues to Do Well

It is now Monday afternoon and Hans continues to do well. His ANC went through the roof at 11K and they took him off his GCSF. His counts are expected to drop over the next couple of days and then level off. They'll be starting to wean him off morphine in the next couple of days. He's pretty grouchy these days, but I think it's great that at least he's letting us know he's not feeling well. I'm starting to get a bit of cabin fever, but if we really are out of here by the weekend, I think I'll do just fine.

Elle and Michael and Taylor did great at first communion yesterday. Carmen's parents hosted us all for a party afterwards. It was a lot of fun, thanks Monte and Charlie! The kids were so proud of themselves and were just adorable. I'll post pictures one of these days... His Grace Foundation found us a nice volunteer to sit with Hans during the service, but Kevin stayed just long enough to see Elle receive her communion, and then he was out the door to get back to Hans. He didn't want him feeling neglected. It worked out well.

My mom and Pati are flying back to Seattle as I type this. I think I worked them pretty hard while they were here. Thanks for everything! We had a great time with your visit.

On a happy note, Patrick went home today! Yeah!
Lara

Doctors Think Hans Has Turned a Corner...

That's what the doctor said last night, that Hans has turned a corner! He is actually looking pretty good right now. They turned up his morphine this morning, and as we speak he is coloring for the first time in days and days! He still needs oxygen, but he's okay! He hasn't had fever in days. I forgot to mention that he does have an ANC. Yesterday it was 150, and today it is 980. That's great - the GCSF is doing the trick. Dr. Krance just told us that if all goes well, and he gets off antibiotics and starts taking a couple of medications orally, he'll be home by this time next week. Whoo hoo!

Have a good weekend.

Lara

Greta with Elle Before Locks of Love

This is Greta and Elle in December at HS Musical in Seattle. Lifetime friends, their bond goes the distance...

Greta After Locks of Love! Thanks, Greta!

100th Night at TCH

Hello! Well, I pulled out my calendar today and I figured out that this will be Hans' 100th night admitted to TCH. This is overall, not just this admission. Quite a milestone! But still it pales in comparison to some kiddos we know; one new friend, Nathan, has been here since November and is just now starting transplant. Another friend, Serenity, has been here 4 months and found out her transplant didn't take. Presently there is no match for her- one reason to consider joining the registry. I know they are doing a drive next Saturday at MD Anderson in Houston. I think they are doing a nation-wide drive next weekend, in fact. Again, you can read more at www.marrow.org. I've heard all that's entailed is a cheek swab and some paperwork. I'm going to try to get down there and see if I can help. It's funny, I had heard that a lot of the donors are German. Then someone told us that you have to get swabbed there when you get your driver's license. I'm not 100% sure if that's true, but it's interesting. I heard the BMT doc's didn't mind going over to pick up the donations.

Hans is still doing okay, but they've warned us his recovery will be bumpy. He was put back on oxygen today and was taken downstairs for 2 chest x-rays. The results were 'no change'. This is good - it means they're not detecting pneumonia. He still hasn't had fever again today, but he does seem a bit uncomfortable. He is retaining fluids (he has gained about a pound in fluids, not good). So, they are giving him a diuretic to help drain it off. He is asking for specific food and drinks, like blue Kool Aid. He's not drinking or eating much, but at least he seems to have the right idea.

The girls are on their way back from San Antonio. They took a river tour, a carriage ride, and were sprayed with saltwater by Shamu!

Thanks again for all your words of encouragement and support.

Lara

PS Email before/after photos of you, your children or grandchildren if anyone else has done Locks of Love too, I'd love to post them!

Elle Before the Locks of Love Cut

After Locks of Love

Hans, Feeling Well Enough Today to Take Dad's Call

Celebratory 'ritas... (it's not what it looks like, Elle ordered water!)

Fini

The Cut

The Hair

Hans, Grandma Stephanie and Tyrone

Hans' Decorated Door

The Banner Signed by All of the Kids and Staff at Little Saints

Sweet Baby Hans

I just had to share this old photo of Hans on the little slide at the park by our house. He's about 18 months here, and just as sweet and precious as you could imagine!

Hans potentially on the upswing

Hans is doing better today! After what, five days of fever, Hans has now been fever-free for about 14 hours! I am feeling extremely relieved. His heart rate is down, and he is off oxygen. It's wonderful! Hans has been excessively crabby and fussy today, like a little wild baby bobcat, but I am thinking that it's good he's finally okay enough to let us know that he's not feeling "great." I mean, he still has 0 for an ANC and his mouth is pretty sore and his lips are peeling pretty badly. He has a rash on his chest and his diaper area has not improved, but at least he's not febrile for the first time in days and days.

I am doing better, I was able to do some normal stuff like balance my checkbook and pay bills today. When Kevin comes back down I'm going to break out of here for a while and go on a walk and run a few errands. I'm looking forward to that. Kevin fell asleep by 7pm last night, he was so wiped out from the previous night.

Elle and Grandma Stephanie and Auntie Pati are having a good time in San Antonio. Elle said it got pretty wild last night after the Spurs won the game.

As we are experiencing our first bits of good news, our friends have just learned that they have a new challenge ahead of them. Kelly Virina, 32, my friend who helped set up this site, just learned that her cancer is 'acting up again'. She conquered breast cancer and has been done with treatment for several months. I'll be keeping her and her boys Taylor, 7, and Blaze, 4, and husband Kyle in my prayers. She'll start a new chemo regimen in the next week or two.

Lara

Wednesday

So, Hans is still struggling. Yesterday while I was out, Hans spiked his highest fever yet and the nurses started to get concerned about his high respiratory rates and heart rates. They've hooked him up to oxygen now, so at least that is making it easier for him. He's just hanging in there, still sleeping through most of the day. Today he had a chest xray and and EKG which each showed 'no change.' We got the first sign of good news, that there are some Monocytes in his blood cells. This is the first precursor to him actually having an ANC again, so we hear. So, hopefully just a few more days and things'll be getting better...

Kevin went home for the night. He had a pretty rough shift. Hans is sort of testy with me - so it's been all about daddy. Kevin only got an hour or so of sleep last night. Hope he gets some rest this evening.

Elle looks pretty beautiful with a nice bob! She did great yesterday at Brian of London. It's nice that they comp the Locks of Love cuts. She'll send her hair off with a note and picture. The girls are now on their way to an excellent adventure in San Antonio.

I've been passing time with the first season of LOST. It's amazing how many episodes you can watch in a quiet hospital room and a sleeping boy and no commercials. It's kind of fun to get wrapped up in a drama. I could never keep up with the series on TV - I'd miss episodes and I was always lost, ha ha...

"Day Plus 6"

More of the same today... Hans is still having fever. The doctors aren't surprised, they said that as the mucositis breaks down the esophogal lining, it releases bacteria that need to be attacked. He's a really good sport about all of this, he's not whining and complaining much at all. They are upping his hydrocortizone to a stress dose which should help with the fever. In just a few days his white counts should come up and things should look better and better.

I'm a little bit of a freak these days about germs. We've pretty much decided to close the room off to all other visitors. We're even sending my mom, Elle and Aunt Pati to San Antonio for three days. They'll have great fun, and Hans can just get through these days with only our germs to be exposed to! I've never washed my hands this much in my life.

I'm going back home today for Elle's hair appointment. She's donating 10" of her hair to Locks of Love today! I'll post a picture just as soon as I can. I'm pretty proud of her. This experience has been tough on her, but as her teacher, Mrs. Castro, says, "She handles her life beautifully." It's also been endearing how she has opened her heart to other patients and siblings, as well as nurses on the floor. All the time people ask, "Is Elle coming today?" Sorry - just had to take a boastful moment here to recognize Hans' 'big beautiful sissy.'