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