The Post of the YEAR!

Hey everyone!

I guarantee this is the post you have been waiting for...

We took William yesterday afternoon for a check up at the Children's Hospital Hematology/Oncology Clinic. Due to a merge a few months ago this was our first trip to the Minneapolis clinic...our new home away from home in some respects. We were a bit nervous about finding the place so we left early with a bit of excitement.

We arrived at the beautiful building and walked in to a spacious waiting room, our familiar face Javonn (The St. Paul Clinic's receptionist), shouting out "Hello Mr. Moeller" as she always does when we walk in. They always treat us as if they know everything about us. True friends on our journey!

William ran from us to the play area setting his sights first on "Cozy Coupe" car that looked like a fire engine. He was in heaven and we had to spend a few extra seconds promising that we'd play more when we got back from our trip to the lab. He went reluctantly but was thoroughly pleased to spot a wagon to ride in and kid chairs shaped like puppies downstairs in the lab waiting room.

We went in for his blood draw hoping he wouldn't be scared in this new place. Daddy held him on his lap as William watched the lab tech put the needle into his arm. The bravest boy I know never cried, and actually said "Thank you" to the tech as we walked out!

Oddly enough, when it was our turn to get roomed, they told us that they were very busy so they put us in a big room; one that is probably used for many cancer treatments. It was basically a hospital room, big bed, sweet TV, and an XBOX360 too! We had to wait a long time so we were thankful for the large space for William to run around, and all the toys inside for him to play with.

Finally Dr. Messinger came in to see us. (He is not our own Hematologist, but one we have seen many times before and he definitely knows William and our story). As always he came in with his huge smile and gentle accented voice that is filled with love for children. He has always taken the extra time to establish rapport with the kiddos first whether blowing soap bubbles while washing his hands or letting William play with his stethoscope and the light on the otoscope to check his ears.

This Dr. walked in to our room to catch us off guard and ROCK OUR WORLD! He told us that the numbers he sees are very pleasing to him. He said that he can now definitely diagnose William Henry with Autoimmune Neutropenia the form of his blood disorder that goes away by age 2! He said that William is on his way to normal numbers. He said that our baby is better. He said that he is healthy and PERFECT! He said that this issue or in his words "this hell you have gone through" will not have any effect on William's future in any way. He said that this will not happen to any future children we may have. He said that this will not put William at risk for any other Autoimmune disorders in life. Any the best words of all...He said that we never have to go back to see them again. He said, "Forget about us!"

He explained that testing William periodically to check his ANC (Absolute Neutrophil Count) is now pointless. He feels confident that he can fight infections on his own! He knows that we can advocate for him at any time should he have a drop in Neutrophils and an infection (which he also said is not likely). We no longer have to rush to call the on-call Hematologist at the first sign of infection or high fever. We no longer have to run down to Children's ER each time with grave worry of what we'll find. The only time that we would need to demand that Dr.'s check William's Neutrophil count is if he showed signs of a severe infection such as another abscess.

Dr. Messinger then congratulated us, kissed William and told our little guy to run after him as he went to get our FINAL print out of William's numbers. He said goodbye and that was that. We walked down the hall not fully reacting to our life changing news. We ran into Javonn again who stopped us because she "can't let us leave yet." She had to go and grab his Christmas gift from the Clinic. (If you remember from earlier posts, each child and their siblings get a gift at Christmas time because of an angel who died of cancer see her caring bridge site sometime it will inspire you! http://www.caringbridge.org/visit/princessmaddie)

William got to open his toy, got to hug Javonn, and another very special lady...his Nurse Linda who has been there for a lot of our journey too. We told them both with huge smiles and watery eyes that this was our last visit...that we aren't coming back.

We took William to the lobby, where he got the golden coin he earned for being a good boy and let him put it into the toy vending machine they have there. All kids get a prize on the way out! He picked a super ball, and had to spend 5 minutes replaying the moment he got it by stuffing it back up in the vending slot, pretending to turn the handle and letting the ball come out again. He took another spin in the fire truck "Cozy Coupe" and then we said good bye.

Nothing really set in until we got to the car. Then I lost it. I cried and cried, just as I am right now. No words can explain the way this feels! We have traveled on a journey that we didn't sign up for. We walk away now SO changed by everything. We are more knowledgeable, we are tougher, we (I) tend to worry more, we look at our child in a more thankful way and appreciate every move he makes, and we feel SO SO SO LOVED by so many people. In a way we are lucky not only for the incredible outcome we are now celebrating, but we are somehow lucky for the experience as well.

I'm sure this won't be my last blog on the subject as there is just too much to say and you all know how much I need to talk! :)

Final words for today... THANK YOU!

All the love we can squeeze into you, and a huge, wet, drooly, "Mwah" from William too!

~The Healthy Happy MoellersWilliam at St. Paul Children's Hospital on December 11th 2009 (9 months old) after surgery and a bone marrow biopsy.

William on December 12th 2010 the day after the record snowfall in MN!

An October Like No Other!

Hey all!
Did October cruise by or what? Some big things happened to us this month and it's good to share them with you.

First William started full time at his new daycare. We ended up switching because our other daycare couldn't offer us 5 days a week and we didn't want to expect my dad to keep taking William 1 day a week to make up for it. His new daycare is still in Woodbury and he goes there with one of his little buddies (Enrique who is 12 hours younger than him and a teacher friend's son) and now another teacher's daughter Rylie. He is now adjusted and VERY happy there! It was sad to leave Jan's and we still miss her though!

We REALLY had a great Halloween and totally made up for last year when all 3 of us were suffering from H1N1. Thinking back to that sometimes is mind blowing...it was the first time William was EVER sick and getting through it with Mommy and Daddy being sick was tough! (Who knew that that was just prep for what we were heading towards in that year?)

The Tuesday before Halloween, my mom and I took William trick-or-treating at Kowalski's in Woodbury. They had little stations set up all over the grocery store and I was BLOWN away to see how he knew just what to do. I realized later that he had been playing with a trick-or-treating plastic pumpkin at daycare for weeks, loading it up with little toys etc. so he'd been practicing. At the store he was so happy each time they would put something into his bucket and for the next several days he would dig through, bring us something and wait until we let him have a little taste!

Now for the crazy part of that night... If you remember that Tuesday was the first night of the huge windstorm we had. After trick-or-treating at Kowalski's William and I had to stop at my parent's house to borrow something for Paul. (He was teaching his community ed. pottery class as usual). As William and I arrived home and drove down our alley, we slowly dodged blown around garbage cans only to see our neighbor guys moving some brush near our driveway. Our nextdoor neighbor Rodger said, "You might want to park in my driveway because you are not getting into yours!" I pulled forward to see one of our greatest fears...our neighbor on the other side's enormous Silver Maple tree lost a huge limb in the storm. Of course it fell right on our garage! (If you don't know...Paul has put an enormous amount of work into the garage since we moved here...go back in our blog archives to May 2008 to see where he started from if you are bored).


The AMAZING and lucky part is that the tree fell just 15 minutes after Paul left to go teach his class. It also fell 15 minutes BEFORE William and I got home. Had we not stopped at my parent's house for a small errand, who knows what might have been. All I know is that we both park on the driveway, never in the garage, and the main part of the limb landed right where my car is normally. It also took down our neighbor's main power line, wedged it under the limb, and remained live on the ground for several days.

Immediately the fire department showed up to check out the live wire and to mark off our yeard with yellow tape. I was so in awe of everything happening that my only reaction was, "Can my son see your firetruck?" Ha ha ha! They walked me down the alley to their truck and let William
get in. He was super excited and they even turned the lights on for him. Unfortunately I set my bags and camera down in our yard and didn't get any photos.

We're still wading through that mess with insurance and getting bids for repairs but we know it will all work out.

REAL HALLOWEEN
This year we had 2 fun costumes for William. His real costume was a dragon outfit from Old Navy...it was cuddly, shiny, and adorable! We practiced wearing it a few times the week before and he had fun running around in it growling in it. On Halloween we visited my grandpa Papa Dick and William trick-or-treated there. Then my parents came over and we took William trick or treating around our block. He liked that but his favorite part of the night, was answering the door for all of the trick-or-treaters at our house. He would squeal with delight when he heard their knocks!
William' second costume was purely for Mommy and Daddy's entertainment but was a hit! This summer we found an employee name tag in the parking lot at Target. We just HAD to dress him up as "Eddie." See for yourself!


The big news of the month is that on the same day the tree fell, I took William for his latest finger poke and ANC (Absolute Neutrophil Count). We were wondering what we'd get because he had just had the Flu/H1N1 shot and at this point his system might show any complications from it (if there were any). Instead when the results came in...his ANC was 1,232 ALL ON HIS OWN! This is the first time we have seen this in nearly a year!!! Generally we have been told that 1,500 is the bottom of the normal range, but he is getting darn close! We won't see the Hematologist until late December early January but for now we can't even begin to explain how this makes us feel!

William did make it through a Croup diagnosis which did develop into uncontrollable coughing for two nights called Reactive Airway Disease. After that though he has been doing fairly well. We always have his Nebulizer at home to help out with respiratory issues and although he hates it, we are not afraid to try it when in doublt! We are mindful of all of his sniffles, endless runny noses, coughing all night and other normal kid cold stuff, but for the most part he's been ok. He is happy, playful, and learning new things and new words every day. I'll say from now until forever that I've mistakenly blinked and he turned into a little boy!

Thanks for reading!
Love,
Katie, Paul and Sweet William

Quickie!

Hey everyone,
Here's a quick update:

We're all doing great. Healthy, happy, BUSY!!! I started Graduate school September 17th and have gone for 2 full weekends now. It is really fun, interesting and very pertinent to what I am already doing in my classroom. I am doing it with my good friend Erin too. On Sundays our husbands get together to watch football and William gets to play with his girlfriend Macie who is 6 months older than him TO THE DAY! (Older woman!) So far I am extremely happy for making this choice.

We went to our 6 week check up at the Hem/Onc clinic today. Things went very well. William's ANC (Absolute Neutrophil Count) was 632 today. This was on his own without any meds. I meant to blog 3 weeks ago when we had it checked at our clinic. That time it was 648. This is a good sign that he is slowly re-building his ANC on his own. That leads us more in the direction of Autoimmune Neutropenia. (The kind that should go away by age 2!)

Dr. Schults was happy again with how William looked and acted. She said we can space his visits out to every few months and to have his blood checked every 6 weeks now instead of every 3. This is great for him because it means less pokes, (More wondering for Mommy and Daddy though).

We talked for a while about giving him his flu shot today. This year they have mixed the flu vaccine with the H1N1 flu vaccine. Dr. Schultz and I had some concerns because deep down we have never been able to completely prove that William's Neutropenia was not caused by the H1N1 Flu in his system last year. (Paul, William and I are pretty darn sure we all had it last October). We decided that the benefits of protecting him from the regular flu outweighed the chance that it could knock out his neutrophils again so he got the shot today. Now we wait 3 weeks and get his levels checked and see what we see...

Today was sadly our last visit to the Hem/Onc clinic at the Children's Hospital building in St. Paul. In order for them to provide the same services the clinic is merging with the Minneapolis Children's clinic. We now have to cross the river for our visits, but I'm told that the building is gorgeous, and all of our people will be moving over there! We will miss the old one though.

Hope you are all enjoying the beautiful (finally) Fall weather!

~The Moeller's

Dog Days

Hey Friends and Neighbors!
Here we are at the end of the summer...ALREADY!!! We have truly had a wonderful summer. Many play dates, swimming, camping, a great trip to Montana, and much much more.

We just returned on Tuesday from Bozeman MT where my brother Ted and sister-in-law Vanessa and nephew Linden live. We went out MT with my parents and went on a great trip to Yellowstone National Park and then headed to Bozeman at the end of the week for some fabulous family time. Our whole trip was a blast minus one small set back. I ended up in the ER in Red Lodge, MT on the morning we planned to head into Yellowstone. This was my 4th trip to the ER in the last 5 or 6 years for kidney stones. Luckily the pain meds worked fairly quickly and I was able to pass the stone while at the hospital after a whole lot of fluids in a short amount of time. The next day I was fine and we were on our way! We saw many geysers, pools, mud pots, and other geologic wonders, as well as many awesome animals.

William Henry has had a great summer himself. On July 13th we visited Dr. Schultz his Hematologist. He had been doing so well on his G-CSF medicine and when we checked his Absolute Neutrophil Count (ANC) it was still in the normal range even though we had spaced his shots out to every third day. She told us that there comes a time that we need to have a trial without any meds. We decided summer was the best time to do so because we are both home and if he got sick we could be available to go in to appointments, the ER, or heaven forbid...the hospital.

We skipped the shot of G-CSF that he was due for on July 13th and haven't given him a shot now for around 6 weeks. Three weeks ago we took him in to our regular clinic to check his ANC. We were a little disappointed to see that it was down into the 900 range (1500 is bottom of the normal range), but 900 was a great little number for a guy who used to average 0 without G-CSF!

We took him in yesterday to see Dr. Schultz again and she thought he looked great. He was happy (a little "P.O.'ed" after getting poked in both arms for his blood draws), and playful. She was very happy with the William she saw overall, but we had to wait a while for his labs to come back so we could find out what his ANC was. She reminded us that we use G-CSF to raise his neutrophil counts, but our goal is not to treat the neutrophil #, but to treat William's health. We really need to give him G-CSF only if he is ill or fighting an infection.

Yesterday's ANC was...drumroll...........................120. Boooooooooo! We were bummed and Dr. Schultz was a little surprised based on how he looked overall. At this point though there is nothing wrong, it's just that his body is not yet keen on making enough neutrophils on its own. He has not grown out of his Autoimmune Neutropenia. We have plenty of G-CSF in our fridge and we can start it again if necessary at any time the Dr.'s decide he needs it(it would stink to have to start giving him shots again though). In the mean time we just watch him for signs of illness, fevers, or other signs of infection, and continue to LOVE spending time with our happy boy.

We go back to teacher workshops on Monday and he goes back to daycare. I think it will be a very sad day for a boy who has had both Mommy and Daddy every day all summer. (Not to mention how sad we will be).

We are thankful for the many many healthy days we have had this summer. We are certainly going to stretch the summer as long as we can. We will be living it up at the Fair a.s.a.p.! I am tasting Sweet Martha's cookies in my mind as we speak!

Hope you are all doing well!
Love,
The Moeller's ;)

Warm Thoughts...

Hello!
Schoooooool's out for SUMMA! School's out for eva!

Happy First day of Summer!

I hope all of you are doing well. We had a WONDERFUL summer day and we are SO lucky that we can both be home with William. We got up this morning, had a quick breakfast and headed out for our 1st successful bike ride with William in the Burley bike trailer! Last time we tried he screamed the whole time. (Now we can laugh about it). We're pretty sure it was the helmet. It kept falling over his face. Today Paul fiddled with it and finally it stayed up so he could look around and enjoy the ride. He was smiling a lot too. I can say that I was pretty tired by the time we got home (I was lucky enough to be the puller!)

After napping today, we enjoyed the heat by getting wet with Will's sand and water table and his blow up pool. He loved them both! He loves to splash and isn't afraid to get his face wet. As Paul was blowing up the pool Will climbed all over it laughing. Later as Paul was spraying the water into it, he immediately climbed in it clothes and all! We had the stereotypical kid with the HUGE white saggy diaper after a few minutes.


We got some SUPER news last week and I have been dying to sit down and blog so we could share it with you! (I need to back up though first and share a quick "Debbie Downer" moment 1st).

On Saturday June 6th, Willy woke up with a pink eye that looked puffy and swollen. As the day went on it worsened a little and worried us some so we called the on-call Hematologist. He said not to worry unless it got redder or he developed a fever. The next day he woke up and it seemed as though it had switched to the other eye. I had a crazy day running from a baby shower to a wedding shower that both started at the exact same time. One in Farmington and the second one in Woodbury. By the time I got home Paul was getting pretty worried because William had a fever of about 100.3. We called the Hematologist and they decided we needed to bring him in to the E.R. to be seen. By the time we got there the poor baby looked miserable. Both eyes were pink, half closed because they were swollen, and weepy and his nose was constantly running clear. The Dr. felt that it could be just pink eye, but it can be caused by allergies, viruses, or infection (which for William is the worry!).

They took blood samples and set him up with an IV just in case he needed it for antibiotics later. After a few hours they came to tell us something GREAT... His neutrophil count came in at 4,000 (1,500 is bottom of normal range) and this was his trough day meaning he was due for his shot of G-CSF medicine later that night. That meant he should have been at his lowest point before getting the meds. We were all astounded. The Dr. was so happy that she said, "I like these numbers so much that we get to treat him like a "Normal" kid." She sent us home with eye drops for pink eye and that's it! She asked us to follow up with his pediatrician in a few days.

He did develop a horrendous cough and cold by the time we got to his Dr. appt on Wednesday. With the stress of our last week of school and everything going on it was really tough. His fevers continued from Sunday until Wednesday and we decided on our own to start using his nebulizer to help him breathe. We had to keep him home from daycare and we were SO lucky that my dad was willing to take him since he was already busy being "Yaya" (Grandpa) with my nephew Linden who was staying with he and my mom for two weeks. DR. Warnken thought he looked pretty good and was happy with all we had done. He said the nebulizer was the right choice and he was optimistic that Will would start getting better soon. He was able to go back to day care for his last two days and we got through our final days of the school year.

Ok back to the good news:
This last Wednesday, we took William for his scheduled finger poke to check his neutrophil count. We are now taking him every 3 weeks. This has been nice, less pokes for him and less running around for us. Any way...about an hour and a half later I got an unexpected call from our hematologist Dr. Schultz. She said that she had his results from his poke. I said, "The one from last Sunday in the E.R. right?" Surprisingly she already had his counts from that day! She was so pumped to share that his ANC was 4,061! This again was a trough day. She said that because he has had two good counts in a row, we could start spacing his shots out a little more! Now instead of getting a shot every other day, he gets a shot of G-CSF every third day. We are all so happy and hopeful that he is on a slow path to growing out of his Neutropenia. We'll see and we definitely won't celebrate that yet, but at least this little bit of news is great for now!

Hope everyone had a great Father's day with family! We had a nice day together.
Tomorrow William and I are off to a playdate with his baby guy friends at a pool. Should be awesome!

Take care and wear sunscreen!
~Katie, Paul, and William

Sorry for the Lack...I'm Back!

Hey everyone who is so gracious to to keep up with our crazy lives!

I am ELATED to say that things have been going swimmingly these days! Pun intended.

Swimming lessons have been great after William's two week stint of crabbiness. Not sure where the crying came from, he was never scared of the pool but made it known that he was unhappy. We got to use life jackets last week which was fabulous! William has a super sweet one because his Godfather Cory spoiled him. He was so darn cute floating on his back and trying to get his toys in the pool. I am sad to say that tomorrow is his last lesson of this session. We'll have to sign up again, and hope that this summer is more "summery" than last year so we can hit the pools every chance we get.

Willy Poo has been wonderful in the health department lately too! YAAAAAH HOOOO! I just checked his ANC for today and it looks like it is 1,220. Last week was 1,521. (Bottom of the Normal Range is 1,500). We are taking him in for this test only once a week. We take him in on a "trough" day. A "trough" day is the day that he is due for a shot of his G-CSF. It means he should be at his lowest Neutrophil count and has the lowest level of G-CSF medicine in his system when we are checking his levels. Basically he gets a shot of the meds the same night as the test, so generally his Neutrophil levels are even higher than what we see on his tests.

He is incredibly energetic these days! Having a higher Neutrophil count will do that to a person. :) When you feel great you can learn new things and refine your gross motor skills! He is graduating from his goofy little butt scooting all over the house to crawling on carpet, rugs, and grass, and the occasional hardwood floors. He has been able to crawl for a very long time, but always chose to scoot around on his butt instead. I think he finally realized that crawling is much faster and he can get into more things. He is also "cruising" (walking while holding on to objects) EVERYWHERE! He traveled all over my parent's house today grabbing on to anything he could to keep moving. He only needs 1 finger when walking, and has tried to take a step or two away from objects he holds on to. Last weekend Paul yelled, "Oh my God Katie get in here!" I ran into the room with my heart in my throat to see that Paul discovered our boy climbing up the stairs on his own. By the time I got there he was on the 4th step. Look out Mommy and Daddy!


Our little baby doesn't look like such a baby any more which is so mind blowing. He's a pretty handsome dude though and looks a ton like his cousin Linden did at this age. One day I realized that their teeth have come in, in the exact same order so it's even harder to tell the difference in some photos. Linden and my brother and sister-in-law will be visiting MN from Bozeman,MT Memorial Day weekend. It is the first time since our wedding in '07 that all 3 will be here together; we are so excited. Can't wait for some cousin time together!

William's passions continue to be anything with wheels or things that spin. He has commandeered the neighbor's daisy whirl-a-gig so that it now resides in our grass and he will flip anything over to get at the wheels. I'm pretty sure he'll be moving on to lifting small vehicles to do this next! Anyone drive a Smart Car or Mini Cooper?

I was just talking at lunch today about the difference in our lives right now. Things have been really crazy with the end of our school years approaching fast. 14 days left with kids!!! I said though that when I start to think about a lot of the things we have been through this year I can conjure up this tightening in my throat and chest. I can feel myself tightening all over as if I am bracing my body for a physical blow. I realize now that for nearly 6 months I felt this way every second of the day, even as I slept. We were always on the alert and ready to head to Children's Hospital at any second, which we had to do many times. I know now what "Survival mode" is all about and I hope to not go back there any time soon.

I am so blessed that right now I can think about all of that, then take a deep breath and try to let it go. I think every day is a miracle for all of us. I also think it may take a long time to really come to terms with everything we have dealt with. I am finally realizing that my baby was VERY sick, that my baby has a serious blood condition that is still inexplicable... that my baby had surgery, a bone marrow biopsy, 2 hospital stays, many ER visits and trips to the Hem/Onc clinic, and countless pokes in every part of his body. Sometimes it would be so easy to be ridiculously upset about all this, and I think that would be the easiest way to react. I try to remind myself that there are people all over the world who have been through something similar, even more so there are people who have been through things way more difficult than this. It helps to pray for those people and it puts things into perspective.

I love the incredible feeling I get when people ask how William is and I get to grin and say that he is GREAT! He is great, and right now we get to see the happy little boy that was hidden inside for a while.

Thank you to everyone who continues to think of him, pray for him, and check in on us from time to time. We couldn't get here without all of you!

Love,
The Marvelous Moeller's
XOXOXOXOXO

Enjoy the beautiful weekend!

Quick Update

4/14/2010 Wednesday

Hey Everyone,
It's been a while and I have been intending to update each night...here I am finally.

Overall I am SO pleased to say that we have been doing well. We (meaning I) are continuing to give William shots of the G-CSF medicine every other day. This is to keep his neutrophil count at a nicer level so that he has more energy, is happier, and feels more like himself. (It also protects him a little more so that if he gets an infection, his body may be ready to fight it).

During my Spring Break (the last week in March), William got to stay home with me. We had lots of fun activities going on, including a trip to the Mall of America with his buddy Enrique (and his mommy Renilda) to see the Easter Bunny at Toddler Tuesday and another visit to the MN Zoo with cousins Jeanne, Brienna, Chloe, and Dalila.

He was just not himself that week, he had a cold and was tired and moody all week. He threw up a few times, which we now think may have been a gag reflex from coughing too hard. I was a neurotic mess all that week worrying about what could be wrong with him. I was also a bit gun shy to take him places because he threw up all over himself in his carseat while we were running errands on our first day of break. His ANC (Absolute Neutrophil Count) was only 50 that week when we stopped in at the Hem/Onc clinic. This was a SHOCK since we had been giving him the shots of G-CSF for a while already. Later the Hematologist said that it was quite possible it was so low because he might have been fighting a tough cold virus or something. (Fighting a virus will lower your white cells).

The good thing is that last week he started to bounce back. He was happy, but clingy, on Easter weekend and his energy slowly climbed back up. He saw the Hematologist and she thought things looked good. His ANC last week was 5,000! (Remember the bottom of the normal range is 1500 so this was a nice #!) He was a bit of a turd last week, waking up around 4:00 each weekday morning when my alarm for school goes off at 5:30. Guess he was really struggling to get off of Spring Break mode!

This week he has been a happy, smiley, boy with lots of energy. He can now stand up in his Pack-n-play and crib and he "cruises" around a lot (meaning he walks holding on to furniture or people). He still does not crawl on his knees, but is extremely skilled at scooting around on his bottom. He goes all around the house and it is pretty funny to see him try and scoot in the grass. I have noticed him pushing up on his hands and feet into the yoga pose called "Downward Facing Dog" so I think he really wants to learn to stand on his own. He has also gotten up on his knees and moved a few times before rapidly switching to his "scoot on the boot," so maybe he will learn to crawl traditionally some day. Oh and his ANC this Monday was 9,300!!!

During my Spring Break I got to visit with my friend Jen, a soon to be graduate of the U of M School of Pharmacy. For fun she looked up the cost of some of the drugs William has taken through all of his illnesses. She was telling me that the G-CSF he gets is VERY expensive. We get the G-CSF in these tiny glass vials, about the size of your pointer fingertip. We draw up 10 units of that vial which I would guess is not even 1/4 of it. Then we have to throw away the rest because they are single-use vials. We are now receiving these doses from the National Neutrophil Registry, because William is part of their studies so we get them for free. Jen revealed that EACH vial of the G-CSF he gets is around $240.00!!! She said that vials of the next level of concentration are around $1200.00! Thank you God first of all for health insurance, and second we now know that all those weeks of pokes 3X a week so that William could be in the Registry have been WELL worth it!

I hope the beautiful Spring weather is lifting your spirits and enriching your daily lives. We are enjoying walks and even tried our first bike ride with William in his Burley bike trailer. (He screamed bloody murder the whole way and kept pushing his helmet over his face, so guess who's going to be wearing a helmet during play time to get used to it?!?)

Thanks again to all of you who are keeping tabs on us in your own special ways. It won't be long and we'll be done with school and ready to rock the summer! Let us know if you're free!

Much love,
~The Moeller's

Weekend Wonders

3/28/2010 Sunday

We Moeller's had a WONDERFUL weekend and wanted to share our joy with you!

Saturday morning we had to get up early to get ready for William's first swimming lesson. We signed him up for "Tots" which is a parent and child class at Fairview Community Center. We picked this site because they have the warmest pool (I've heard from others...and it WAS warm)

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Paul watched and took pictures while I got in with William. He was already leaning head first towards the water the second he saw it! He does this at bath time too as if saying, "Get me in there NOW!" We had a blast together and I could tell the proud Papa did too from all the picture he took. We practiced floats on tummy and back and kicking. We also practiced "monkey crawling" along the wall to get a toy. We sang a few songs and splashed, splashed, splashed!

I used to teach this class when I taught swimming lessons for all those years, so this was pretty cool for me to enjoy it with my own baby! We knew he would love it as bath is one of his favorite times. I was so impressed with William as he showed no fear of the water, and seemed comfortable with me and the teachers the whole time. He wasn't scared to be on his back or to be held out away from my body.

We left the class with all 3 of us beaming! Finally a milestone that wasn't changed by illness! I can't tell you how much that meant.

Paul and I then brought William to my parents house to nap while we drove to Cambridge to get a race car toddler bed for him. A co-worker of my friend Elizabeth wanted to get rid of the bed so we said we'd take it even though he won't need it for a while. He will be the coolest little boy in town when he moves into it!

Today we decided it was time to bite the mullet/bullet and get William's 1st haircut. He had a tiny trim a few months ago from my grandpa Dick who is a retired barber. He trimmed the sides which were "wings" over his ears and a little of the back but it had grown considerably since then and was officially a filthy 80's mullet! We brought him to Kid's Hair this afternoon. He screamed bloody murder when we put him in the chair. He was scared and screamed louder than he ever has for ANY of his medical stuff! Then he would stop though and watch a little Dora the Explorer...and then start it all over again. He certainly looks like a different boy now! His beautiful eyes look even more amazing now.






Later today he and I were looking at "the baby in the mirror" (his reflection) and I told him, "Wow look the baby in the mirror decided to get his hair cut too!" He smiled so big!

We have been giving William the shots of G-CSF every other day to help his neutrophil levels get to a slightly nicer number. We have been taking him in for fingersticks twice a week to see how it is going. I am pleased to share that his ANC (Absolute Neutrophil Count) was around 2300 on Wednesday! (1500 is the bottom of the normal range). So it looks like things are working. We have experienced a few worries here and there this week and I can't say that he is 100%. He's had some very weird BM's, a low grade fever one day, and he vomited last night. But we have to keep watching, praying, and hoping that they're just little things.

This evening we spent time swinging in his baby swing in our backyard and walked around the block before bed time. What a great way to end an excellent weekend. I'm on Spring break this week and will have William at home with me. It should be nice.

I have updated our photo website if you have a chance to look. There are 2 new files, for February and March. You can go to http://picasaweb.google.com/paul.c.moeller

We hope you all had a chance to enjoy the beautiful weekend weather.

All our best,
The (Mullet free) Moeller's

Home Again Home Again Jiggety Jog

3/12/2010 Friday

What a week! We got home last night from a stay at Children’s Hospital St. Paul again. Paul took Liam in for his follow up appt at the Hematology/Oncology clinic on Wednesday morning at 9:00. I called to check on them during my lunch at school and found out that they were still at the clinic. William was getting IV antibiotics and fluids at that time. He had 3 pokes before they could get the blood they wanted for tests. Paul said they were trying to decide if they wanted to admit him to the actual hospital or not.

My good friends at school convinced me to just leave and that they would take care of everything. So after 2 bites of my sandwich I scrambled to get down to the Hem/Onc clinic. I got a call on my way that they had already made the decision to admit him and that we would just be waiting for them to get everything set up for us.

It turns out that they did a test on Liam’s blood called a CRP which means a C Reactive Protein test. It serves as a marker for inflammation in one’s system. If the marker goes up they can tell that your body is fighting something. Unfortunately it does not tell you anything more, like what or where the issue is. Because the CRP came back higher than it was in the ER on Tuesday they wanted to admit him so they could monitor him more closely, and give him the IV antibiotics without us having to get up in the middle of the night and go in or something.

One positive thing they found though was that Liam’s ANC (Absolute Neutrophil Count) was in the 900 range. This means that since he is really sick, his body was actually trying to respond with some Neutrophils to fight it off. (Generally he doesn’t do this on his own). So we stayed at Children’s from around 2:00 p.m.on Wednesday until 4:30 p.m. Thursday. They have been keeping him on Tylenol, and Motrin to keep his fevers down. They have gotten as high at 103.3 degrees and he is pretty miserable when they fevers come back. They also had him on IV antibiotics, an iron supplement, and G-CSF the medicine to help raise his neutrophil count. It was nice to see him happy, playful, and feeling well when the medicine was working, but any time the fever reducers wore off he was a mess.

On Wednesday evening our Hematologist stopped by to hare some news about his Neutropenia. She decided to call “THE Neutrophil Guy” who is named Dr. Boxer. Apparently he is in Michingan and specializes more than anyone in Neutropenia. He is the head of the Neutrophil Registry (Which I will get to in a minute). She wanted to share with him the results of William’s 6 weeks of finger pokes to see if he agreed with her findings. He was quick to agree that he did not see any signs of cycling in the 6 weeks of blood tests. He felt that at this point they do not believe that Liam’s Neutropenia is “Cyclic” (which is just one form people get). This is great news as Cyclic Neutropenia is permanent and must be treated with G-CSF to keep those that have it healthy.

Dr. Boxer also agreed with Dr. Schultz that at this point they can lean pretty far away from Congenital Neutropenia! They both feel that at this time his low neutrophils may be caused by Autoimmune Neutropenia (Which usually goes away by age 2). Generally they cannot diagnose it as such until it actually goes away, so we most likely will not be sure until it’s gone (God willing). Now William is not a textbook case of Autoimmune Neutropenia though. Most kids that have it present their issues a lot later than 9 months (when he did) and generally they do not have infections as significant as he has endured. Most of the time I guess they just have low neutrophils. (It’s pretty likely that although it is very rare in general, many kids have had it and no one ever knew that they did).

Because if the fever issues William has had, Dr. Schultz was planning on doing a treatment of IVIG (see the blog from 3/8/10 for more info on that). She talked with Dr. Boxer about it to see what his opinion was. He said that he would not recommend it, as it is not all that successful, and a bit risky. Instead they came up with a new plan for Liam that I think we feel pretty good about right now. To get him well and through the next few days, we will be giving him a shot of G-CSF to get his neutrophil count to a normal level. That should help him to fight off any infection in his system (as a normal healthy person would). Then after this is over, they think we should try giving his a low dose of G-CSF every other day to keep Liam’s level at a “nicer” number. This won’t mean that he will be in the normal range most of the time, but hopefully we will get him boosted up a bit so that he has more energy than he has had in the past few months. (I was VERY pumped about that because I know there is a happier, more energetic boy hiding inside of him right now and the low neutrophil counts are keeping him down).

The next plan is that Dr. Schultz and Dr. Boxer feel that since Paul and I are very vigilant parents who really know our son, they feel that we will recognize when Liam is starting to get sick. They would like us to give him a full dose of G-CSF if that happens to get his numbers up right away. That way if we end up in the clinic or ER with another infection, we will have already power boosted his neutrophils. Then hopefully redness, warmth, and puss will show up where the infection is (That’s what neutrophils do). That way the Dr.’s can find and focus on the issue instead of just generally treating him.

Today a home care nurse will be coming to our house to teach us how to give him shots of G-CSF subcutaneously (in his chub). We will learn how to give him the shots ourselves. We decided not to go with the Insuflon catheter this time. (Last time we had one inserted into his arm so we wouldn’t have to poke him ourselves, we should just shoot the medicine into that). We learned that Liam could not take normal baths with the catheter, which he LOVES. We also will be taking him to swimming lessons in a few weeks so we don’t want to deal with keeping it dry (impossible). Hopefully we will get over our anxiety about poking him quickly and I know he will handle it well as he blows me away with everything he endures!

Now this weekend will be about fixing fevers, bringing up neutrophils, and fighting infection with antibiotics. Sounds like a blast!

Hope all of you are well. Thank you for your kindness, thoughts, prayers, and for following our saga!

Love,
~The Moeller’s

3/9/2010 Tuesday

Well we were all ready to get Liam up and ready to go to day care this morning when he felt warmer than he has in the past few days. We took his temp and found that he had a 101.7 degree fever. (101 for us means an automatic trip to the ER because he is at risk for infections). Immediately we start calling school, daycare, my dad, the hematologist on call, etc. About an hour later I had a sub in place for school, Paul was on his way to work, and my dad was on his way with me and William to Children’s ER.

By the time we got there his temperature registered at 102.2 degrees. They got us a room and some Tylenol for little man. He was pretty uncomfortable at this point so I think the Tylenol was a good idea. The Dr. came and checked him over from head to toe and could not find any visible signs of infection. His ears looked good, his chest sounded fine, and all of his skin looked good too. He ordered a chest x-ray, and a few different blood tests.

After the surviving the drama of the poke and the torture of strapping him to a board for x-rays, Liam was able to relax. The Tylenol was definitely working, as he could not stop smiling at my dad and I. For a while he was pretty playful. We watched my favorite: The Ellen Show, and then a little Elmo’s World on Sesame Street which was brought to you today by the Letter “I” and the number “6.”

The Dr. returned after talking with the Hematologist and said that they did not see anything on any of the tests, so they would give him a dose of IV antibiotics. After the IV drip was done they got ready to discharge us with directions to bring him into the Hematology/Oncology Clinic tomorrow. We brought him home and he has been sleeping soundly ever since (he did not nap this morning). Paul plans to stay home with him tomorrow and to take him in for his appointment. We’ll just have to snuggle him up tonight and see what the morning brings.

Hope everyone had a great day!
~K, P and W

What's next?

3/8/2010 Monday

Boy time flies! I have been a little tired lately and couldn’t muster the effort to head upstairs to blog blog blog (Paul’s laptop from school which I normally use is on hiatus). Poor me right? ;)

William and I stayed home a week ago today to rest as he had so graciously kept us up from 1:00 am until he fell asleep just as my alarm went off for school at 5:30 am that Sunday night to Monday morning. Since about February 27th he has been having really low grade fevers of about 99.5 degrees and has not been sleeping trough the night as he typically does. We felt that he was most likely teething, but as always we worry and want to make sure that it is not anything more. Last Monday after waiting all day to hear back, I talked with our Hematologist and she thought I should take him in to see our normal peds Dr. to get him checked for ear infections and pneumonia.

Luckily our clinic took him at the very last minute and the Dr. felt that we were probably right, just teething with a bad cold to boot. He said once again, that if one didn’t know that William has something serious going on with his white blood cells, he appears to be a perfectly normal 1 year old with 3+ cutting teeth and a killer cold. “Beautiful ears and clear lungs!”

We have kept an eagle eye on him since and luckily our daycare has allowed him to come even with the low grade temps. Each day at daycare he has done very well, playing, eating, and talking up a storm. Often the temp subsides as the morning goes on and he seems fine the rest of the day. This continued through this past weekend as well. (So despite a lot more waking up at night, a nasty runny nose, and crankiness here and there…he has been doing ok.)

Today Paul took Liam to a scheduled appointment at Children’s Hematology clinic to check in on how things are going with him. The Hematologist wants to see him approx. 1 X a month and she wanted to run some more labs like she did last time to see what is happening with his blood cells. Last time she found that signs of Roseola showed up in his blood stream. It showed that he had had a past exposure, (Makes sense since that was what he had when all of this Neutropenia drama FIRST began back in December) but also showed that there may be more of something live in his system. She wanted to keep an eye on that and so that was part of the need for the lab draws today. She also wanted to check to see if the antibody that kills off his neutrophils is still present in his system or not. The last time they checked it did not show up, however the error factor in this particular test usually falls on the side of saying it is not present when it really is.

Liam did have a 99.5 degree temp at the Hematology clinic today and so upon further examination she thought she may have seen some fluid build up in one of his ears. To be on the safe side she put him on an antibiotic. Hopefully this will help with the temps he keeps experiencing. I was lucky enough that Dr. Schultz had Paul put me on speaker phone so she could explain things and talk with me during their appointment. (I work a lot later and would not have been able to make it in time so after my students left I got a call and could be a part of the visit. She is SUCH an amazing Dr. and a wonderful person as well).

Dr. Schultz also mentioned that her next preferred move would be to give Liam a round of IVIG treatment sometime in the near future. I have blogged a bit before about IVIG but I think I may be able to explain it a bit better. Basically this is an antibody product from many different people’s plasma. She said ideally Paul and I could just give him our antibodies, but unfortunately one or two people’s bodies cannot make enough it takes MANY people to get enough antibodies. The good thing is that this product can be fully “Scrubbed” with detergents so it is a lot safer and the risk could then be comparable to getting a blood product from an anonymous donor. What they will possibly do is give him this antibody product to see if his immune system will attack. In the mean time his system may “forget” to continue attacking his neutrophils. (Apparently before GCSF the drug they have given him to raise his neutrophils they used to use IVIG). If it works, it would tell us that this neutropenia he has is caused by something viral or possibly could still be Autoimmune Neutropenia (the childhood version that goes away). If the IVIG treatment does not respond the way they are hoping, then there is more of a chance that Liam’s neutropenia is congenital (and more permanent). In that case our next move would be to do another bone marrow biopsy, but we’ll wait on that until it is necessary.

Dr. Schultz is willing to wait for this treatment/test until my spring break (last week in March) so that we don’t have to miss as much work. She explained that we would have to plan on spending a whole day at their clinic (with the hope that we would get out much sooner). Apparently the IVIG is administered through an IV very slowly. Some of the side effects or concerns (Which is why they only administer this in a clinic or hospital setting) would be: an allergic like reaction, a severe headache due to Aseptic Meningitis (NOT anything more than an irritation of the tissues and is NOT an infection like typical meningitis), danger to kidneys if not well hydrated (don’t worry they check 1st), and possibly a few other issues. This sounds scary, but Dr. Schultz said that they administer IVIG in their clinic every day and rarely has she seen any of these side effects. She explained how fully prepared they are to handle them though.

When I talked with her last Monday over the phone she had a good handful of positives for us. At this point we get to stop the finger sticks to check his blood 3x per week. YAAAAAAAAYYYYY! We will now take him to check his neutrophil levels 1x a week! I keep saying, “What will I do with all of my free time???” She said that thus far she has not seen any cycling patterns in the blood study that we have been doing over the last 6+ weeks. This is great news as a cycling pattern would make us lean towards Cyclic Neutropenia which is a permanent condition.

She also said that in the last few weeks she thinks that although very minute, she has seen an upward trend in his ANC (Absolute Neutrophil Count). Typically in the beginning his counts would be around 0 to maybe 100. (Remember 1500 is the BOTTOM of the normal range). Lately his averages are more in the 200 range. Dr. Schultz hopes that this could mean that, ever so slowly, his condition is improving.

Right now it seems that her ultimate hope is that we find that Liam’s neutropenia is being caused by some sort of VIRUS in his system that is not going away and has not allowed his system to let mature neutrophils out into his bloodstream. She feels suspicious of the Roseola that showed up on a recent test, and she again has not ruled out the possible H1N1 he experienced in October. There are more possibilities, one being Autoimmune Neutropenia which should go away by age 2. There is still the possibility of something permanent but it seems that each time we talk with Dr. Schultz she leans ever so slightly further away from that. It helps us to keep our sights on the positive things we experience and to be patient while things slowly get weeded out.

Thank you to all of the many people (many we don’t even realize or know about) that pray for us and our little guy. We know he is SO loved, and his beautiful smile and tight little hugs around our necks tell us all how much love he has to give. We’ll get there!

Love,
~Katie, Paul and Liam Moeller

The BIG Birthday!!!

2/14/2010 Sunday

Happy Valentine’s Day to you all! I am so excited to say that we survived a wonderful year with our incredible son. William Henry turned 1 yesterday and we had a BIG party! Of course though everything was done William style, which lately seems to occur with no less than a handful of drama. ;)

We have been planning William’s party for months actually…gathering ideas and items if I saw them along the way. (I have to admit my dark secret that I actually bought a party kit on clearance during Black Friday shopping when I was still PREGNANT with him…but hey it was on clearance and I had a 40% off coupon on top of it, so I’ve had the monkey theme picked out since then). We’ve been looking forward to a big celebration since many of the most recent holidays have been a little crazy with all of the medical issues popping up at the most wonderful times.

This week was pretty hectic for us as Paul’s bowling schedule kicked back in, he started a new session of community ed pottery classes, and I had both parent/teacher conferences Thursday night, and an Autism conference to attend all day Friday which meant sub plans for one of the craziest days for first graders: Valentine’s Party Day!!! Dun dun dun!

Wednesday afternoon I was nearing the end of my school day when I got a phone call from our Daycare lady Jan. She called to let me know that Will had vomited while napping in his bed and was laying in it. This was a surprise as she said he had been doing fine all day. After cleaning him up she said he sat and played happily until I came to pick him up. He also popped his first tooth on top (which makes for 3 teeth now) so it made us feel pretty unsure if he was sick or if perhaps it was the tooth coming through that made him feel ill.

Wednesday had been our scheduled day to run a few errands, including a trip to buy Will’s birthday presents. Paul and I decided to meet up in Woodbury after Will’s finger poke. We got his gift and then went to dinner at Noodles and Co. where they were doing a fundraising night for my school. Will ate the mild baby food I had picked up very hungrily, but a few minutes later vomited it all up at our table. We packed up our meals and everything else so we could take him home. In the mean time he puked all over Paul’s black jacket and through his two shirts. We got home and put him to bed.

Paul stayed home with him Thursday and they had a very typical day, playing, napping, and carefully eating. He did fine until he vomited around 4:30 pm. Paul put him to bed that night while I was at conferences and just like the night before he slept soundly and never had any issues.

Friday I dropped him off at my Dad’s house pretty early. The plan was for Mimi (my mom) to leave work early and spend the day with Will and Yaya (my dad) getting the last things from the store for the big birthday party. Unfortunately Will vomited up his whole breakfast and spent a lot of the day being sick. I was at my wits end by the time I made it to my parent’s house after my conference in River Falls. We continued to get everything ready for the party, but I was worried sick that Will wouldn’t recover and we’d have to cancel his 1st Birthday party.

We brought William home and tried to give him his antibiotics (from last weeks ER trip for the fingertip infection) right before bed. He was coughing and gagged a bit on the medicine and then proceeded to puke up everything, all over himself, the white carpet in his room, and Mommy and Daddy. During the night he slept well again and nursed well in the morning. We had planned to let Paul and William stay home in the morning to nap normally while I went to my parent’s house to decorate and set up everything left for the party. I guess the morning at home went ok, and his breakfast stayed down. When they arrived at my parent’s he was very clingy and attached to me. I again felt extremely nervous that he was going to be sick for his party. (I can’t discount the fact that there were almost 40 people there, but generally he is friendly and happy to be around most anyone). We fed him carefully but soon enough he vomited all of the baby rice cereal back up!

We were leery about giving him cake, but he dug right in to his carrot birthday cake and even got his face right in there to suck off a lot of the frosting! He did his job as a one year old and it felt good to have that special moment. Amazingly he seemed to feel a little better after that. He got on the floor and played with the kids at his party. He smiled and was held by people. Then he survived the storm of presents that everyone spoiled him with! (THANK YOU EVERYONE!!!) Not long after that he fell asleep on my grandma’s lap and stayed on the couch with she and my grandpa for maybe 45 mins.

After he woke up he acted very hungry again (throughout all this he has had the DESIRE to continue eating and I think he has been truly hungry for days). We decided to give him a bottle of breast milk, which he drank right up. Unfortunately he sat up after that and vomited it all over me! This sort of started an off and on cycle for the rest of the evening. We’d feed him broth or other clear liquids, and as soon as he would cough, up it all came! After everyone left the party, his sweet daycare lady Jan, and her husband Mark stopped by to bring him his gift. He did ok while they visited but threw up a lot after they left. We decided that this could not continue. He was not keeping anything down and we were worried that he was getting very dehydrated. Paul called the on-call Hematologist and then we decided it was best for us to just take him to Children’s ER. In fact I was on my 3rd outfit for the day by the time we made it to the ER!

So yes, poor baby got to spend his memorable first birthday visiting the ER… ☹

The Dr. there decided that since he was coughing, sneezing, and also had diarrhea it was probably not just the antibiotics irritating his stomach. He felt that it must be some sort of virus. They said that they would give him a medicine called Zofran which is an anti nausea medication which would hopefully get him to stop the gag reflex which occurred every time he coughed. Since William was dehydrated their plan was to give him an IV, and at the same time take a little blood to check his hydration levels.

The nurses used something on him that we had not seen before. They called it a “J tip” which I guess is a pressurized tube which shoots air into his skin, pokes a hole with the air pressure, and injects Lidocaine to numb he skin instantly. They said that he wouldn’t feel any of the pokes after that. He still cried very hard, but the nurse explained that kids often get really scared of the sound the “J tip” makes. After 2 attempts, the 2 nurses could not get a vein in his arm. I think it was due to being dehydrated. They were able to get enough blood to “check his chemistry”, meaning that they would see how dehydrated he had become. The Dr. said that level 20 was pretty normal, 12 was admission to the hospital for dehydration, and Will was about a 15 at that time.

We decided against another poke attempt to get an IV started and instead gave him an oral dose of the Zofran. Will then nursed very well and we got to try and give him his first popsicle. They were pleased to see that he nursed so well and kept the milk down. They sent us home with instructions on how to try and re-hydrate him and with a little bit more of the oral Zofran.

Today (Sunday) he has gagged and burped off and on but has not vomited any of the liquids we’ve been giving him. Now we just have to hope that he is on the upswing!

Thank you to EVERYONE for the different ways that you helped to celebrate William’s birthday! Despite the drama, he had a wonderful day with lots of smiles here and there. We are SO lucky to know so many amazing people. We are proud of ourselves for surviving the first year, but so immensely proud of what a tough little boy we have! He is incredible…

Love,
Katie, Paul, and our Birthday Boy

It's been a while...

2/8/2010 Monday

We’re FINALLY updating the blog! A little and a lot has happened since our last update…I decided to wait until today as we just came from an appointment with the hematologist.

Backing up a bit, things have been going very well in the last 2 weeks. William was healthy and as always has been handling his 3X per week finger pokes like a champ! No tears as usual. We got up early on Saturday and had Sarah our wedding photographer over to take some 1 year photos of him. We had some cute ideas and had a great visit. (She is a teacher in Paul’s district as well). We did have to work a bit to get William to smile though and he tired easily.

We noticed after William’s morning nap that his fingertip (the one that was poked on Wednesday) was red, swollen, and the poke site was turning white. Basically bad news, he had an infection! We called the on-call hematologist and he recommended putting some antibiotic ointment on it and waiting a while to see if that helped. He said to wait maybe 6 hours, then go to the ER if it had not improved.

I was lucky enough to get to go to a movie with my friend Elizabeth that afternoon and I was really excited. After I got back from my movie we checked his finger again. Of course it had not improved, we felt that it looked worse. (The only good thing about that is: William has low neutrophils, the white cells that fight bacteria and make pus…in this case it was a good thing that his body was able to make this reaction happen). We packed up a diaper bag and headed off yet again for Children’s ER.

We were anticipating I.V. antibiotics and a possible dose of GCSF (the drug to raise his neutrophils). We were pleasantly surprised to be sent home quickly with 2 oral antibiotics and instructions to let him play in warm water to soak his finger. Yay! (They also knew we’d be going in for our appointment in 2 days so they were satisfied by that.

The plan for today’s appointment was to find out about the genetic testing results. (We have been waiting on these for about 8 weeks). It turns out that the results are STILL not officially written up and reported to our hematologist, but she was able to call and talk to someone who told her that all of them came back negative.

His means 2 things on the surface… 1. We still don’t know why William has neutropenia and 2. There were no genetic mutations that showed up on the tests, which is a GOOD thing!

Digging deeper, there is a lot to explain. Think of the issues he could have in two categories: Production and Circulation of the Neutrophils. Production meaning: how his bone marrow makes the neutrophils. Circulation meaning: how his body takes the produced neutrophils and sends them out into his blood stream.

On the production side, the genetic testing could not find issues with ELA2 and Hax1 genes. Often when they find a mutation on one of these two genes they see that the person has something called Kostmann’s disorder, more commonly referred to as Congenital Neutropenia. This is permanent and the patient has to be treated with high doses of GCSF to keep them healthy. The uncertainty remains though, as some people will still have this form of neutropenia and will not show the genetic mutations.

The other production issue could be Cyclic Neturopenia, where your neutrophil leves cycle from low to nearly normal and back again over a few weeks time. So far Will’s fingersticks 3x a week have not shown any signs of cycling, but at this time we need to keep watching just to make sure.

On the circulation side, the potential issue would still be Autoimmune Neutropenia, sometimes called Chronic Benign Neutropenia of Childhood. (I blogged about this form of Neutropenia explaining it more on 12/18/09). This is something that most children grow out of by age 2 and would be our ultimate diagnosis. There are things that point towards this, but other things that point away from it.

First William has an antibody present in his bloodstream that seems to be killing off the produced neutrophils as they enter. (Autoimmune neutropenia has/does this, which points us towards it). William’s neutropiena has presented itself a lot sooner than the average child who has this though, which points us away from it. Also William has had a few infections through all this…most kids with autoimmune neutropenia do not have many health issues other than low neutrophils, another thing that points away. The interesting thing is that if he does get a diagnosis of autoimmune neutropenia, it CAN be caused by a virus…ahem H1N1 anyone??? (Dr. Schultz is not discounting this theory either).

Dr. Schultz has decided to stay on our course right now. William is staying generally healthy and she does not see any reason at this moment to put him through more tests to narrow these options. Some of the tests could involve another bone marrow biopsy, and/or putting him on something called IVIG Intravenous immune globulin (IVIG). IVIG is a mixture of plasma parts taken from thousands of people’s blood antibodies. Putting these into William’s bloodstream would cause what I would call a windstorm. His body would kick into high gear to fight off all of the antibodies introduced and would then hopefully “forget” to keep producing the antibody he makes that kills off his neutrophils. There is some risk involved as there is potential to cause temporary allergic reactions and to infect him with viruses that could mistakenly be present in the blood plasma. (I took that as he could get infected the same way anyone who gets a blood transfusion could). The IVIG could confirm for us though if William really has Autoimmune neutropenia or not.

To sum it up, we still don’t know why he is neutropenic and it seems like we may not know any time soon. Maybe another year will pass and this will all be over. Who knows! In the meantime we have to finish his 6 week course of finger sticks 3x a week and continue to watch him for infections and take care of them. We will meet with the hematologist once a month to stay on top of everything. Dr. Schultz did send out a blood test today to see if the neutrophil killing antibody is still present and I think we’ll hear back on that one sometime soon.

Paul and I think we can handle all this for now. We’re so lucky for the bits of good news and thankful that things are not worse. The only thing that saddens me is that throughout all of this drama we feel like William has not been his normal perky, smiley, self. He tires more easily too. I asked Dr. Schultz if there is a correlation between low neutrophil counts and lower energy levels. She said, “Absolutely!” I just feel like we’re missing out on a little piece of the boy inside. It makes remember how precious every smile, every giggle, and every moment he acts like crazy man are!

We will celebrate like mad this weekend as our sweet little boy turns 1!

Love,
The Moeller’s and our Little Monkey

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1/25/2010 Monday

Hey everyone! It’s been a while since I have updated. In a way no news is good news. We have been mainly going about our daily lives, and heading to finer sticks 3X a week. I just spent some time charting the info I receive from his test results. It is my job to keep track of it all as a back up in case the faxes don’t go through from clinic to clinic. As of today William has gone through AT LEAST 26 finger sticks to track his blood counts! Wow does that hit home. He is a pretty amazing kid. We had a new lab tech today who asked me how he would handle the poke… before I could answer, another tech came in and said “Oh that sweet little boy handles everything very well!” Last Friday the tech said, “Oh I finally get the famous little guy who everyone talks about.” Is it good to be famous for being such a sweetie, even though you’re famous because you are a medical lab frequent flyer?

After stopping the GCSF drug on the 11th of January William’s ANC has dropped pretty significantly. With someone who has neutropenia like he does this is not a surprising result. His average ANC (Absolute Neutrophil Count) for the past week or so has been around 400. (1500 is the bottom of the normal range).

Will has been seemingly healthy and happy as always. He is STILL not crawling, but has learned to move a little by kicking his feet on the floor as he sits up. He spins in all directions this way and for the most part seems happy with his new “mobility.” He is starting to pull up on everything and I think that in his mind he can just lurch forward and magically get anywhere he wants. We have to watch as he pulls up so he won’t smack his head on things, or get stuck in his new favorite cart that my parents got him!
Last night and today he felt a little bit warm which send off all alarms in my head. My paranoia sets in at any trace of a fever. (Remember any fever of 101 degrees, we have to take him to the Hematology/Oncology clinic or the ER if the clinic is closed). They want us to be extremely vigilant about signs of infection. We’re hoping he’s teething but you never can tell. So far he has only made it to 99.7, which is good, but I’m keeping a close eye on him.

Today there was no school in my district so William and I had a play date with some teacher friends and their sweet baby boys! We got together every other week this past summer and we had a great time today as well. One of the boys was born the day after Will and the other is about 4 months older. I think they will continue to be good friends.

I called to check in with the Hematology clinic on Friday and talked with our Hematologist. She is hoping that the results of our genetic testing will be in sometime the first week of February. We are going to make an appointment to go in and have William checked and to talk about anything they have found out. She said that it will be great to have those results, but our biggest hope is that the tests don’t find anything. (That would mean that he would not have a genetic disorder that is causing the Neutropenia, or low neutrophils). That COULD mean that his condition is not permanent, but we won’t think about all that till it comes. Whatever we find out, we will decide our course of action from there.

The bummer thing is that I asked how many more weeks we need to take him to get his finger poked. Dr. Schultz was sad to say that we really need to see William’s norms without any GCSF in the mix. That could mean that we may have to continue pokes 3X a week until the end of February. She said that if the genetic testing shows something though, we could/would stop the pokes then. So it’s a one or the other sort of situation: 1. If he has a genetic disorder, we’ll stop poking (BOO genetic disorder, YAY no more finger sticks) 2. If there is no found genetic disorder we’ll have to continue pokes to watch for any cycling with his levels (YAY no genetic disorder, BOO more poking!)

In the mean time we are preparing ourselves for reality…our baby will be turning 1 on the 13th! Ahhhhhhhhhhhhh!

Hope you had a good start to your week.

Love,
The Moeller’s

WOWSERS!

1/12/2009 Tuesday

Quick update since last Saturday…We continued to give William his GCSF (Granulocyte Stimulation Factor, the medicine to raise his neutrophils) through the catheter in his arm until last night. The nurse from the Hem/Onc clinic said that his catheter had to come out Monday night (as it has to be replaced every 7 days). She said if his counts from yesterday looked good, we could remove it and possibly skip his does of GCSF today.

We pulled the catheter out last night, which turned out to be very easy. I was slowly pulling off the adhesive around it (it hurt him like a band-aid being pulled off) when I realized the catheter had already come out! We were so excited to let William take a normal bath again and he LIVED IT UP! Splashing, kicking, clapping, trying to drink the water, and anything else an 11 month old boy can manage. (Yes he is turning 11 months tomorrow sniff sniff!)

Today I was able to see the counts from yesterday's finger stick CBC (Complete Blood Count). SHOCKINGLY his ANC (Absolute Neutrophil Count) today was 28,000! I hope I calculated that right…but I did it 5X and compared it with the other counts to make sure. Can you believe it? A little over a week ago he was only at 150!

We’ll be checking in with the Hem/Onc clinic soon, as the Dr. wants to continue to keep close tabs on William, but at this point he seems very healthy! Hopefully we can keep him off of the GCSF now to continue the blood study to find his true baseline ANC. We will continue to wait for our genetic testing results as well. Maybe 2 more weeks???

William is getting more physical with his play. He loves wheels more than anything right now. He explores the different toys he has that make sounds and have lights, but he always ends up spending a lot of his day spinning wheels and trying to see how things work. We saw him try to pull up on his Radio Flyer pushcart a little today and he is moving his body from sitting to tummy. With a little help he got from tummy to sitting as well. He pivots on slippery floors on his tummy and acts like he wants to move all of the time! Now he’s got to crawl, crawl, crawl!

Here’s a BIG HOORAY for GCSF and our little boy for all he endures!

Thanks again everyone! XOXOXO

~Katie, Paul, and William

Movin' on Uuuuup!

1/9/2009 Saturday

So we have been giving Will daily doses of GCSF through his Insuflon Catheter in his arm. On Tuesday I took Will to the Hem/Onc clinic where the nurse had me administer the GCSF into his Insuflon Catheter by myself for the first time. It was a little scary, but I didn’t have to poke him so that was good!

We had a home care nurse come out to our house on Wednesday to set us up and make sure that we were able to administer the medicine on our own. Of course there were a few snags first…

I called the nurse to set up a time for her visit and told her that we needed to take Will to get his CBC finger stick first. She was very nice and said that she was very flexible with her time for the evening. She said to call her when we arrived at home (so we could make sure the GCSF medicine had been delivered to our house).

We got home and OF COURSE there were no meds here! Paul started calling numbers and found that the order was prepared by some form of Walgreen’s Pharmaceuticals. They said that the package had been sent to FedEx and should have been delivered to us. Paul then called FedEx and started trying to track down the box. It turns out that the package was addressed with White Bear Lake’s zip code (similar to ours) and so the package went to White Bear, was then shipped back to St. Paul, and sat there for the rest of the day because all of the trucks had already gone out for the day. They basically said “Sorry but you won’t be getting your package today.” Paul made it clear that thanks to them we would be packing our bags for a trip to the ER so our son could get the drug they were supposed to deliver. Luckily the office was still open and so he drove to downtown St. Paul and picked it up himself and SAVED THE DAY!

The nurse was wonderful at checking on us, answering questions, and making sure we knew what we were doing as far as the GCSF goes. We had a nice visit with her and she was wonderful with Will. She brought him a froggy stuffed animal donated by a patient’s foundation for kids who are sick during the Holidays. She even pretended to try and climb in his Johnny Jump Up while we gave him his dose of meds to distract him. Will thought it was really funny!

So now for the good news!!!

On Wednesday we took Will for his CBC, but I didn’t get the results until Thursday. It turns out that the GCSF (Granulocyte Stimulation Factor…meds that raise Will’s Neutrophils…which are the white blood cells that are low in his system) is WORKING, especially now that he has been getting it in subcutaneous form (under the skin instead of through an I.V.)! His ANC (Absolute Neutrophil Count) was 3,606! Remember that 1,500 is the bottom of the normal range.

Today we calculated the results of his CBC that was taken yesterday. His ANC is now 8,606!!! The drugs are working and his body has Neutrophils right now so he is able to fight any remnants of the infection that would remain from last weekend’s drama.

I got a message from the Hem/Onc clinic saying that they would like us to continue the GCSF until Tuesday and then hopefully we can stop it for a while to get back to the blood study where we poke Will 3X a week to find a baseline of his typical neutrophil counts (ANC). They also told us that hopefully we will get the results of our genetic testing by the end of the next 3 weeks.

Will's abscess seems to have healed nicely. The swelling is down, the redness gone, and the would looks closed again. He still has has no fevers (HOORAY!), and he seems overall very healthy right now.

It is fun to type a blog entry that ends on a positive note. Especially when I don’t have to start any sentences with “At least…” or “On the bright side…” We will continue to think positively and believe that the end is in sight. Thank you for all the wonderful things you do for us and for others. It is amazing to see what great people are in our lives.

(Oh and I don’t want to jinx ourselves about Will’s sleeping patterns so I WON’T say that things have been going much better right now!)

All our love,

Mr. Mrs. and Mini Moeller

Monday Monday...Blah Blah...Blah Blah Blah

1/4/2010 Monday

We survived our first day back and little boy slept last night too! He woke up as we were going to bed at 10:00 but Paul had the magic touch because he went back to sleep and slept until 6:30! Boy was it hard to wake up at 5:30 today and face reality though. I think I heard the groan of every MN teacher as we headed off to a brand new day.

Paul picked up Will and brought him down to the Hem/Onc clinic for his appt. I was able to join then as soon as I could leave school. They sent William for a CBC (Complete Blood Count) finger stick and I ran into my boys as I came off the elevator. We headed back to the room to wait, and wait, and wait.

They were waiting for his counts to come back and his ANC (Absolute Neutrophil Count) always takes longer. They wanted to see what the GCSF (Granulocyte Stimulation Factor) medicine has done to raise his neutrophil level in the past two days. A nurse practitioner looked at his abscess site on his bottom and thought it was looking better. It is less swollen and red.

The Hematologist came in to share that his neutrophil count was only around 150 today. BUMMER since we have been giving him GCSF for the last 2 days. She was disappointed as well since her goal right now was to help him fight the infection with GCSF and then hopefully take him off of it so we would get on our merry way with the 3x a week finger sticks to find a baseline of his neutrophil levels. She said now she would like him to continue GCSF for 10 days or so and we’ll wait to see what our next move is.
We had to make a choice today on how we will administer the GCSF. We can learn to give baby shots subcutaneously (in his chub like insulin) or they could insert a catheter into his arm and then we would poke the needle into the catheter instead of poking him ourselves every day. For now we chose the catheter. It is called an Insuflon® Subcutaneous Catheter. They put some numbing cream on his arm for a while and then came to “papoose” style wrap him up and put in the catheter. Even though they numbed his arm, it hurt him and he cried hard for a few minutes. Then they administered the GCSF through the catheter.
We thought this was the best choice for now but afterward we learned that we can’t give him a full bath with this catheter as we can’t get it wet. Also the catheter would need to be changed each week, which would require office visits or a home care nurse to come and do it. It would be nice to avoid having to poke our own baby but we’ll see which route works best as time goes on. (We can change our minds at any time).

Unfortunately the GCSF will not arrive from overnight shipment in time for us to learn how to administer it tomorrow so I will have to take William straight to the Hem/Onc clinic after school to get him another dose. Then Wednesday a Home Care nurse will come and work with us to learn how to start giving it to him ourselves at home.
We finally got to leave the clinic at 6:00 tonight and brought our very hungry boy home. The up side to today is that he seemed to do very well back at daycare. Paul said he was playful and happy when he picked him up and Jan said he ate well all day. He again could nap a lot more but hey 1 thing at a time! The cool thing was that William was clapping his hands on his own several times this evening. They have been doing that at daycare a lot and I know being back with his friends helped him to share his new trick. (I’ve seen him clap a little before, but not without prompting him).

Maybe tomorrow will be a little smoother. :)
I think I’ll go to bed at 9:15!

Take Care!
~K, P, and W

ER Day 2

1/3/2010 Sunday

Paul and I are getting ready to go back to school today, vacation is OVER…dun dun dun!
We got up and too William to Children’s ER again to get his bottom checked and another does of GCSF. We were lucky to arrive when we did because it wasn’t busy yet and we got right in.

Right before we left home, I changed a poopy diaper and found that William’s abscess had turned into something resembling a whitehead. (Gross I know!) As I wiped his bottom it broke open and started to weep. We were a little nervous, as we weren’t sure if this was a good thing or not.

We showed this to the ER Dr. and he said that he was very happy to hear that it broke open on its own and was draining. He said to continue to help it drain when possible. He thought the infection site looked worse though today but later said that we might attribute that to William’s higher neutrophil levels from the GCSF medicine. (Remember neutrophils make pus, and redness when you have an infection to help fight it).

The main purpose of today’s visit was to get William another dose of GCSF. They were planning on giving this to him in a shot today. The ER Dr. came though and said that the pharmacy was telling him that due to the concentration they had, it would take 3 shots to get all of the GCSF into the poor baby. The ER Dr. recommended giving it to him in an IV instead. He really wanted to avoid poking William as much as possible. The Dr. said that since we were going ahead with the I.V. he and his team of Dr.’s would like to give William a does of I.V. antibiotics as well to hit the infection hard one more time. We agreed and got ready to start all that.

Our nurse was really great, she was the same one we had yesterday and she was the same nurse who treated William when we first brought him to the ER on December 4th. It was nice to know she really cared about William. We’re so lucky to get all the compliments we do about what a cute, happy, and well-behaved baby we have! Our nurse Holly was no exception. She loved flirting and teasing William and she was very gentle with him. Her first attempt at his I.V. didn’t work out though so she had to try his other arm. (So 2 pokes today).

While his I.V. meds dripped, our Hematologist Dr. Schultz popped in to visit and see how everything was going. She apologized for the GCSF mix up, as there was a misunderstanding with the doses. She explained that it IS totally possible to give him the right dose in just one shot and that they do it every day with cancer patients in the Hem/Onc clinic. It’s just that the ER Dr.’s weren’t as familiar with this drug and so they decided to go the I.V. route. It’s funny how things work out though because I felt better in the end giving him the I.V. antibiotics so we can really fight this infection.

William handled everything very well yet again. He deserves a pony for sure!

He did not sleep at all last night and we spent hours dealing with him whimpering and being inconsolable. (I think it was a combo of no good naps and 3 nasty pokes at the ER yesterday). He continued to be a little clingy once we got home today, but I gave him a nice warm bath to soak his bottom (And to wash off the poop he managed to get all over him from a diaper blow-out!) and he has been taking a VERY long afternoon nap.

Tomorrow afternoon we have to take William back to the Hematology/Oncology clinic for a check up and the last scheduled shot of GCSF. We will do a CBC to see what his neutrophil levels are and try to decide if we can discontinue GCSF for a while. Then we’ll see where we go from there. We have plenty of creams and ointments and oral antibiotics to tide us over till then!

Hope we get some sleep tonight or it will be a long first day back at school.
~Katie, Paul and William

ER Visit

1/2/2010 Saturday

We came home this afternoon from a 5 hour stint in Children’s Hospital ER. There was NO emergency so you can breathe a little easier! We woke up and made an appt. to take Liam to his 3rd finger stick of the week. Right before leaving we changed his diaper and saw that the area where his peri-rectal abscess had been was red and the incision site from his surgery looked like a wet scab. (It has been fine up until today).

We took him for the finger stick anyhow, thinking we’d give his bottom a little time to get better in case it was just irritated from poop. We checked his bottom as we were ready to leave our normal clinic and decided it looked the same.

Our only option today was to take him right to the ER since the Hem/Onc clinic is closed on the weekends. We knew that any sign of infection is VERY serious for someone with low or no neutrophils. We were very lucky when we arrived because they were not busy and we got right in. We saw a few doctors who agreed that our concerns were very valid. They ended up deciding that Liam’s abscess is infected again, but that we caught it extremely early. The actual infection seemed to be the size of a pea. Otherwise he looked VERY healthy to everyone there. He has been in a great mood today and was acting like himself!

We got a surprise as our regular pediatrician came into our ER room. It turned out that he was at the ER for his own granddaughter and found out we were there as well so he came to say hi and check on William. Then our own Hematologist who has been treating Liam since he was staying in the hospital happened to be the one on call so she came to see Liam. We were really happy that she could come and sort of take over his treatment. (Not that the other Dr.’s weren’t doing a great job, but she has been through everything else with us and it was good to have her help make the important care decisions).

She said that his ANC (Absolute Neutrophil Count) was around 150 today. It was nice to hear that they had gone up from 0 on Wednesday but the change is not that significant when dealing with infection. We had a few options to consider. We ended up agreeing to I.V. antibiotics in the ER today with an I.V. dose of GCSF (Granulocyte Stimulation Factor) which helps to raise his Neutrophil count. Liam needed I.V. antibiotics to hit the infection hard, and they decided that since he was looking so healthy otherwise, he did not have to be admitted and stay in the hospital. He got those 2 I.V. doses and then a prescription for an oral antibiotic for the next 10 days.

We were a little bummed to have to give the GCSF because synthetically raising his neutrophil count will now mess with our attempts to see a general baseline of Liam’s natural neutrophil levels. (Our 6 weeks of pricking his finger 3x a week will now be stretched out even longer). We decided it was important to give the GCSF despite that issue because we wanted to get him healthy ASAP.

Now because the GCSF raises his Neutrophils, it could actually make the abscess worsen before it gets better. Sounds crazy, but as your body makes more puss cells (Neutrophils) it will start to act as a normal body would and make the infection site swell, get redder and make puss. We will need to watch this to see if he will have to have the abscess drained again like he did in the hospital. (Hopefuly NOT!)

We will have to bring Liam back to the ER tomorrow for his second dose of GCSF which should be just a quick check of his abscess and then a shot. Then we will take him into the Hem/Onc clinic on Monday for a check in and a third dose of GCSF. We will then talk about if we should continue the GCSF or take a break to continue watching his typical levels.

Now we have to think happy thoughts about William getting past this infection quickly. We handled everything well today, especially the little man who just whimpered when they put in the IV and was a perfect angel the rest of the time. He even flirted and smiled at the nurses after they finished poking him! He played a few mean games of Peek-A-Boo today and started to push up on his knees in our bed this morning. We just want him to have time to be a normal boy so he can catch up on things like learning to crawl.

I don’t want to jinx ourselves but he has only been waking up 1x per night in the last few nights so hopefully we are on track to good nights of sleep again!

Thanks to all of you who are keeping tabs on us. It’s nice to hear that many of you are interested in our story and are praying or thinking about us. We wish you all the best!
Love,
~The Moeller’s