Brianna’s Blog

Summer

June 11th, 2010
  • The school year has ended and the girls both had a good year.  Emma is excited to now be a 4th grader and she is looking forward to a fun-filled summer.  She will be attending several camps this summer and is having a hard time deciding what she is looking forward to most.  Brianna will go to summer school and will have one of her preschool teachers as her teacher.  Fantastic that she will know the teacher!  She will also attend ARC Summer Day Camp and will get to see Keri as her classroom teacher every day!  It will be a good summer!
  • Brianna had a fantastic year at school.  We are so thrilled with the people in her life at school.  We got a beginning of the year and end of the year picture of her and she has grown so much!  I ate lunch at school with her when she was the Star Student and Brianna passes her tray through the line like everyone else, but the lunch ladies don’t put any food on her tray.  They all said hello to her as she went through and she was thrilled to be like everyone else and put her home lunch on the school tray.  They were so sweet!  Mrs. Dirks is so motivational for Brianna.  Brianna can now write her name and is doing well.  We were so thrilled to have LaRonda to work with Brianna this year.  Brianna signs so much more now than she had been.  She is even into narrating what is happening which is a great chance for us to see her new signs.  Now if the dog could just read sign when she signs “Stay.”  Brianna came home from school on the last day with a picture of Mrs. Dirks and Brianna and LaRonda and Brianna. Brianna LOVES those pictures.  She played with them a lot that first day and told me who was in the pictures and carried them around with her. The pictures got kind of beat up, but we put them in frames in her room.  She looks at them and tells us who is in the pictures and then signs “school.”  Clearly, those pictures and those people are special to Brianna.    Brianna loves working with Mrs. Smitterbergh too and gets to copy and deliver papers at the end of the day - a fun way for her to help!  And Kelly (audiologist) and Sandy (itinerant teacher for the deaf and hard of hearing) worked with Brianna through preschool and will continue to work with her until she graduates.  We love having them on her team and Brianna looks forward to working with them too (except when Kelly helps us out by making an ear mold impression - Brianna doesn’t like that when anyone does it).  In speech, Cheryl is also seeing a more vocal side to Brianna.  Now we just need to teach her volume control!  There are so many people at school that are so sweet to Brianna.  We are thrilled to have her where she is.  We are looking forward to 1st grade too!
  • Brianna’s diet is going very well.  We have seen huge improvements with Brianna.  Still difficult sleep, but it is more intermittent than consistent - an improvement in the right direction.  She still has tantrums but they don’t seem to be as frequent.  Her therapists have noticed that she has a better attention span.
  • We got a new FM system for her hearing aids!  She has been wearing this every day at school and decided in March that her hearing aids at home were broken - and she signed once that we needed to add the “boots” like at school.  She is so used to wearing it at school that she noticed her hearing aids at home without it did not work as well.  Finally we got approval for the new at-home FM system in May (submitted the paperwork in January).   We are so excited to have it!  She didn’t want to put the aids on when we got it, but we held her aids by her ears and put the microphone next to the TV speaker with Curious George.  She started clapping and cheering and signing “fix” and now asks to have her “new hearing aids - fix” put on.  We are already noticing that she is more vocal at home!  Good things are happening for Brianna!
  • Hope you have a good summer!

Make A Wish

May 16th, 2010
  • Last week Make A Wish had their annual golf tournament fundraiser.  Doug participated with his office.  Aegon Transamerica Retirement Management (TRM) sponsored a hole on the course, provided an item for the auction, and a team for the golf tournament.  The team wore “A Wish for Brianna” shirts (and they got one for me too!).  The day before the tournament, Make a Wish called and said that they noticed that Doug was golfing and wondered if he’d speak about Brianna’s Wish because another family was unable to speak.  So, Doug got to spend a fun day golfing and then attend the dinner.  The keynote speaker for the event was Norm Parker, defensive coordinator for the Hawkeyes (who also had a son with Down syndrome).  Doug got to sit with Norm for the dinner.  Doug gave a short summary of Brianna’s health history and everyone said he did a nice job - I’m sure he did!  Doug had a fun day for a good cause!
  • Brianna is still doing well.  We see improvements in so many areas, but we are still having some of the same issues. Sleep continues to be an issue and one of my biggest issues is getting her to sit in her car seat.  She will sit fine once I get her buckled, but it is some days quite a challenge to get her buckled.  So we just keep on day to day - thankful for the cooperative days.  All in all, we are still seeing an improvement over the few months right after chemo. 
  • Brianna’s counts for the week:  Hbg 15.0, WBC 7860, ANC 4794 and Platelets 187,000 - all normal!  We saw Dr. O’Brien this week and everything is fine.  We also saw her ENT and he was disappointed that one of her tubes came out after only 2 months.  He said he’d put tubes back if she started to have problems again.  Hopefully that isn’t an issue. 

Slowly improving….

April 26th, 2010
  • We continue to see things improve for Brianna.  Last weekend she got her hair cut and she sat in the chair by herself for most of the cut.  We have been going every 2.5 weeks to get her used to going there and it is working.  The stylist was even able to cut the one long section at the back of Brianna’s neck that Brianna hasn’t allowed to be cut up to this point!
  • We went to a newer church for us this past weekend and Brianna went readily with a junior high student to Sunday school - and it sounds like she enjoyed it.  Then we all went to church and she made it through the entire service.  She played quietly and was able to stay the entire time!  Usually we end up taking her out during the sermon.  Of course, Brianna asked that same junior high student to sit by her in church (and that sweet student did sit with her) - Brianna has made a friend for life!
  • Then this afternoon Brianna had speech and her therapist commented on how Brianna has changed in that she is able to sit and concentrate on one task to completion.  She also commented that Brianna’s babbling has more sounds and sounds more like speech than it did when she started.  Fantastic that even her therapists are noticing changes.  Her OT has had the same comments.  Her teachers are also seeing that she is able to sit longer and work on one thing for a longer time.  She isn’t craving constant movement like she had been during treatment.
  • All of these are great things!  We are thrilled to be seeing improvements and hope to keep going in the same direction.  Brianna still isn’t sleeping through the night and she is grinding her teeth a lot right now - probably something going on that we haven’t figured out yet.  But one day at a  time.

Updates

April 15th, 2010

Some big exciting news - Brianna did not need to be held for the first time EVER at school for cathing this week!  This is HUGE!  It has been taking 3 people to accomplish this prior to now.  So at least things are getting better.  She isn’t consistent yet, but moving in the right direction.

A funny story - Brianna LOVES the almond flour brownies.  And once she starts eating them, she doesn’t want to stop.  After she’s had her serving of brownies, I put the rest of the pan on top of the refrigerator so she couldn’t help herself to more.  Later I heard Doug downstairs asking what had happened.  The rug was moved away from the cabinet, a chair was next to the counter that is next to the refrigerator.  And Brianna was eating a brownie.  She had climbed onto the chair, then the countertop to reach her brownies on the refrigerator.  It was a time when Doug and I went, “Wow!”  Wow - because that is so scary that Brianna got the brownies.  Wow - because we were proud of her for her motor planning to be able to figure out how to get what she wanted.  We won’t be storing the brownies on top of the refrigerator anymore!

We saw Brianna’s local doctor today and I talked to her about the diet we are trying.  She completely didn’t think I was a crazy mom.  She said it didn’t seem like a far-out diet but a healthy diet so she had no problem at all with trying it.  I told her we were seeing improvements in Brianna so she said she couldn’t argue with that.  She was willing to listen and she was fine with what we are doing.  So I’m excited to not be going to Iowa City every month.  Her local doctor can track all of Brianna’s “other” health conditions at the same time as following up for chemo.

Diet Update

April 11th, 2010
  • Well, we are almost three weeks into the diet and are seeing some positive improvements.  Over Easter Doug and I both realized that Brianna was just happier.  She had her full body giggle back and was giggling at everything.  And she isn’t dropping to the floor in a tantrum as quickly or as often as she had been.  Now if we can continue to see improvements.  She still isn’t sleeping well, her rash comes and goes, and she still says no to everything, so we still have some work to do.  She is having LOTS of poopy diapers - and I asked the doctor who is helping us with this diet about it and she said that is expected and a good thing.  To heal the digestive system, Brianna will “shed” all the bad bacteria and replace them with healthy bacteria.  She also now has a rash on her bottom - another side effect of the diet as her body works to get rid of the toxins in her system.  So I think good things are happening and the diet is working so hopefully we can continue to see that Brianna is getting better.  
  • Cooking for Brianna’s new diet is a challenge, but we are having more successes than failures.  She is getting more willing to try new things - Emma is too.  My new favorite gluten free cookbook is The Gluten Free Almond Flour cookbook by Elana Amsterdam.  Cooking with almond flour is so tasty - and healthy too - packed with protein.  We substitute honey for the agave and coconut oil for the grapeseed oil in the recipes and most recipes meet Brianna’s diet.  Brianna loves almond flour monster cookies and coconut ice cream - YUM!  Eating vegetables alone is still a challenge, but we can hide vegetables anywhere.  Fruit smoothies are a staple for Brianna.  It takes extra baking time to always have snacks for Brianna, but is worth it if we continue to see positive improvements.  
  • Life still seems to be crazy busy - guess that is just the way it is.  Doug and I still think if Brianna could sleep, lots of things would improve - and we would feel better with a good night’s sleep too.  Until then … we take one day at a time.

Rough Clinic Visit

March 24th, 2010
  • Brianna had her monthly appointment at the University of Iowa this month.  It was a difficult visit and it made me glad we can see our local doctor for the next two months.  Dr. Staber came in and asked me how Brianna has been doing and I told her I was disappointed with how long it is taking her to come off of the medicines.  Other kids are back to “normal” within three months and Brianna still isn’t sleeping through the night and now has additional food intolerances.  Her first comment, even before I was done explaining what was going on, was that it was too far out now that these effects are NOT from the chemo.  WRONG thing to say to me today!  She was very defensive about it and I took the opportunity and get up on my soap box.  I told her I was frustrated that every symptom I mention is often met with a “that isn’t from the chemo” response.  I had talked with other families and many kids had gotten the rash coming off of treatment - the difference is that Brianna’s didn’t go away until we changed her diet and it did go away for the other kids.  I told her that a dermatologist had told us that part of Brianna’s rash WAS from steroid withdrawal so I thought they needed to step up and tell parents it was possible.  I told her I was tired of hearing that it “wasn’t caused by chemo” and that it wasn’t a “typical” reaction.  I told her that I was frustrated that Brianna has other underlying health issues and I didn’t feel they were considered through her treatment.  I told her I was frustrated because Brianna has Down syndrome and they had forgotten that she has Down syndrome and were only treating the cancer - I also said I understand that the cancer trumps the other issues, but now that she is done, I told her that I thought they needed to provide support so we can get Brianna back into good health.  Just recently a friend that had breast cancer told me she didn’t feel back to “normal” until about a year after treatment - so why would Brianna be back to “normal” within 3 months????  I told her I was frustrated that they keep sending Brianna to different specialists and then the doctors never talk to each other.  I told her I found studies that say MANY cancer patients have insomnia and it can become a chronic condition, especially for younger patients.  She said that study was done for adults so she wasn’t going to read it.  I know other parents that are concerned about how their kids are doing academically post-treatment - and we have been told that there could be long-lasting effects of the chemo.  Why could shooting poison into my daugter’s spine affect her academically, but NOT affect her sleep????  It made me SO angry today that she could tell me that Brianna’s insomnia wasn’t caused by chemo - and for that matter, that her food intolerances also were not caused by chemo.  Perhaps Brianna has had a soy intolerance for longer than the last 4 months, but Brianna was taking steroids which would have suppressed any reaction that we might have seen.  The chemo was probably eating away at her gut, making the intolerances worse - and then throw on some antibiotics and of course, Brianna develops food intolerances.  She explained to me that because we are 4 months out from treatment, these effects would “typically” not be caused by chemo so she thought the issues were from other underlying health issues - I have been reminding them for the past 2.5 years that Brianna has other health issues.  I am well aware of that and now I feel that some of her chemo has made them worse.  They just minimized everything I told them I was concerned about.  And then she told me she wanted us to come to her every month so she would be “in the loop” and know that Brianna was having these issues and that I could call or email anytime to ask her questions about these issues.  Well, it was crystal clear today that they know cancer and that is all - they don’t know the after effects of treatment and they don’t know any other system so I will do best just to tell them Brianna is “fine” and leave it at that.  I told her I would not come monthly to Iowa City - the other thing they don’t know about having a kid with a disability is that Brianna has speech Monday after school, SCL Tuesday after school, OT Wednesday after school, she sees the chiro or local doctor Thursday after school and she has music therapy and riding lessons Friday after school.  School right now is a great place for Brianna so I try to minimize her time out of school as much as possible.  Brianna is a busy girl - she doesn’t have time in her schedule to go to Iowa City once a month now that it is not required.  And we love her local doctor - she will listen to the other health issues for Brianna’s overall health picture. So we’ll dutifully go to our follow-up appointments in Iowa City as required, but they will be short visits because we’ll figure out Brianna’s health issues with a different doctor.  On one last note - I am VERY thankful that they were able to treat Brianna’s cancer.  I am just frustrated that Brianna continues to have issues. 

New Diet

March 23rd, 2010
  • Well, Brianna didn’t have chicken pox.  Whew!
  • Her behaviors have improved and her rash has gotten much better.  Removing eggs, dairy and soy from her diet seemed to help.  Now we just need to see if one or all of them caused the improvement.  We’ve had a few setbacks - when she eats something she is not supposed to eat, the rash comes back so we still have some issues to figure out.  Sleeping isn’t much better, but she is at least getting up once or twice and usually goes back to sleep pretty easily, which is a slight improvement.  
  • I have been working with a nutritionist to get Brianna started on the Specific Carbohydrate Diet.  The premise of this diet is to give her gut a break to allow it time to heal.  We will remove complex carbohydrates from her diet, which means she will eat no grains, and she will eat foods that contain only monoglycerides - or simple sugars found in fruits and vegetables.  These foods are readily absorbed by the gut without effort to digest them so her gut can have some time off while she is still getting the nutrition that she needs.  We should see whether this diet is going to work for Brianna within the first week or two and she should only need to be on this diet for a couple of months.  Then we will start introducing grains back to her diet one at a time to see how she tolerates them.  Parents that have tried this say it turns on a lightbulb with huge results and when we are done, we are hoping that her gut has healed to the point that she will be able to eat the foods that she has developed an intolerance to again.  All the reading I’ve done about the diet suggests that it can even help some people with celiac disease get over gluten intolerance if they stay on the diet for a year or more.  It is an extreme diet and will take a lot of effort on our part, but it really is a healthy diet - fruits, vegetables, meats and nuts.  I believe we will develop healthier habits by having to keep Brianna on this diet.  (Shhhh…Emma even ate a burger with GREEN things in it and LIKED it!)  I’m anxious to see if we will see results.  We ran out of corn chips - a staple for Brianna - and didn’t buy more because they won’t be allowed on the diet - and she asked for them a lot the first couple of days, but hasn’t wanted them since.  We’ll let you know how it works!  Of course, if it doesn’t work, we’ll stop the diet.  Stay tuned.
  • We took a short spring break trip to St. Louis this weekend to celebrate the girls’ birthdays and to get away from the tasks of daily life.  We’ve had spring fever and it was 70 degrees the first two days we were here - fantastic!  We took an idea from a friend and let the girls open presents at a few stops on the way to St. Louis.  They were anxious for the next stop!  It made the drive more fun for all of us!  We walked through Mark Twain historic sites in Hannibal, stopped at a park to play and eat cupcakes, went swimming at our hotel several times, went to the zoo (Brianna LOVED the train and carousel), went to see the Arch, did some shopping, went to the Science Center and saw a neat dinosaur exhibit, and had a great time at the Magic House Children’s Museum.  Brianna can be a bit challenging when she gets tired and no longer wants to participate.  She wanted to go to the car early a couple of times, but for the most part, she did well.  She did NOT like the dinosaur exhibit at the Science Center - we think she was scared of the dinosaurs.  We had a nice weekend - now it is home to start the new diet!

Chicken Pox???

March 3rd, 2010

The school called me today to tell me Brianna had some spots on her torso that were suspicious of chicken pox.  They didn’t want me to pick her up, but wanted us to watch them to see if things got worse.  Great.  Brianna needs one more thing.  I took her to the doctor to have him look at them and he said the spots aren’t defined as of now to be chicken pox, but that kids that get chicken pox usually feel sick prior to getting spots - headache, low grade fever, etc - and Brianna hasn’t been sick - the first time since Halloween.   I think she hasn’t been on antibiotics for 2-3 weeks now!  So, he said it was a low probability that they would turn into chicken pox, but we’ll know tomorrow.  So we wait.

  • I met with a chiropractor that specializes in supporting health, not just the spine, to discuss Brianna’s issues.  I first asked if eating gluten / dairy could have the effects we’ve been seeing with Brianna for a week (Her behaviors have been horrible!  Everything seems to be sensory related - it seems Brianna’s sensory system is all of a sudden too sensitive) - would it last that long?   She said, “Absolutely.”  She said she does not believe that kids with the correct guidance have behavior issues if they are healthy - she believes behavior issues frequently point to an unhealthy gut.  And with the two page health history I gave her about Brianna, she believes Brianna’s system is very inflamed and unhealthy - which leads to food intolerances.  She also said that the gut makes up an important part of the immune system.  So if we can get Brianna’s gut back to a healthy state, it will just help her to be healthy.  She thinks we are probably correct that the soy and dairy are triggers for her eczema and she thinks we should continue to keep these out of her diet for a while.  She suggested some supplements for Brianna and she is going to help me with the pace to change things for Brianna - she believes that Brianna’s system is so sensitive, that we can’t change too much because we’ll overwhelm her.  I am also going to meet with a nutritionist to look into a milder diet for a time to give her gut that time to heal - while she eats foods that are easy to digest and will give her gut some time off.  I feel so much better that we now have a plan.  And she did not make me feel at all that I’m a crazy mom.  I am just so tired of doctors not considering all of Brianna’s health issues and how they work together.  I believe this doctor will be able to help us heal Brianna’s system from the past two and a half years of attack.  

While we were at the doctor, I asked him to look in her ears because she has been so resistant to wearing her hearing aids.  He said she didn’t have an infection, but that the tube in her right ear was out and was sitting in the ear canal.  He thought it could hurt her to put the hearing aids in with the tube there.  So now we feel bad that we tried so hard to get her to wear her hearing aids, and she really had a reason to not want them, but she couldn’t tell us.   The weather is finally changing!  Good things are coming for Brianna! 

Bad week

February 28th, 2010
  • Brianna had a horrible week, behavior-wise.  She ate gluten and dairy on Monday.  Wednesday morning she would NOT get in the car to go to school.  Then when I did get her buckled, she unbuckled every few feet as we drove to school.  I had to stop and rebuckle so many times that I thought we were almost not going to make it.  I think Emma got in right before the bell.  She had a good day at school, thankfully.  I called at noon to make sure she was ok.  More of the same on the way home from school so I switched car seats back to her 5-point harness.  She actually seemed happy to have this car seat back - of course, she is now asking for the other seat back.  Then Thursday morning she freaked out about her boots.  We so need the weather to turn so we don’t need snowboots!  I’m not sure if they are getting small or not, but I finally got her to put them on.  We got in the car to go to school and she took her boots off in the car.  At school, she wouldn’t put them on to walk into the school.  I sat in the car for so long trying to convince her to first put on her boots and second to go to school, that her teachers came out to the car to help me convince her!  Uggh!  At home she’s been fighting everything routine - getting ready in the morning, eating, wearing hearing aids - it is so exhausting and frustrating.  We don’t understand what is going on so we have no idea how to help her.  She is so stubborn and strong - today we told her she couldn’t have any popsicles and she couldn’t watch a movie until she put her hearing aids on.  Well, we went the ENTIRE day without turning the TV on (ok, Doug went to the basement to watch a little of the USA/Canada hockey game - but Brianna didn’t get to watch it).  She just would not give in.  And we tried to just put them on, but she is too strong.  Hopefully this will pass quickly.
  • I’m reading a book about thyroid issues.  Brianna has been hypothyroid since she was 1.  I’m learning so much but it will take a little time to put the pieces together and then to find a doctor that will help me sort it out.  I’m learning that immune system function is important and supplements can help - interestingly, some of the same supplements that I’ve read about regarding other issues.  A gluten free diet is recommended for individuals with thyroid issues because the gluten molecular structure is so similar to the thyroid gland and eating gluten can make thyroid issues get worse.  Another important reason to keep Brianna on the gluten-free diet.  The thyroid affects so many other systems that it is important to keep things in balance.  Brianna’s dose of Synthroid was recently increased, which is concerning to me.  The book even talks about imbalances from leaky gut affecting thyroid function and development of food intolerances.  Everything is so interrelated.  Hopefully, I can find a doctor to help us figure this out - but I think this will be an important piece.  
  • Still hoping for warmer weather….
  • We have not been very healthy at the Kelley house.  We had to take Brianna to the emergency room for croup about 4 weeks ago.  The treatment for croup is steroids - not fun to take this huge step backwards.  Brianna stepped back into her steroid rages even with one dose.  About a week later, she developed a sinus infection that required antibiotics.  Poor kid has been on antibiotics since Halloween.  Then a week later, Brianna had her first post-treatment fever.  I took her to the doctor that day and she tested negative for strep and her lungs sounded clear, so they told us to give her Tylenol and to keep her hydrated.  Very strange for us  to deal with this.  But I kept my panic mode under control.  She had a fever off and on throughout the weekend and then again early Monday morning so I took her to the doctor again.  This time she tested positive for strep.  So, more antibiotics and she missed three days of school.  Then later in the week, Emma and I both got strep and a cold so we spent two days at home together recovering.  Now a week later, Brianna has been off antibiotics for a week and she has snot running continuously out of her nose - probably a sinus infection, but I’ll hold off on antibiotics if I can.  Hopefully, this will be the end of the illness at our house.  
  • So, with all the illness, Brianna still isn’t sleeping well.  We’ve started to work on her sleeping habits and are getting her to go to bed without us and we consistently put her back in her own bed in the middle of the night.  On Supernanny it looks so easy!  Behaviorly, Brianna gets it and goes right back to bed when we get up, but she is still waking up at 1:30 am, 3:30 am and 5:00 am.  So, I think it is still medically related - it took her 2.5 years to get into this bad sleep, I guess it won’t go away overnight!
  • Brianna’s rash isn’t any better either.  She is no longer taking Bactrim and she is done with her post-treatment medications (yeah - she doesn’t need ANY medicine at night!).  She has taken so many other antibiotics that could cause the rash and strep also can cause a rash.  Don’t know what to do about this - and neither do the doctors, but we are very frustrated that it isn’t getting better.  Because we can’t control how her body handles coming off of chemo or that she needs to keep taking antibiotics, we decided to adjust what we can control.  Dairy, soy and eggs frequently cause eczema and we had Brianna on a dairy-free diet prior to starting treatment (it was just too hard to keep her on the dairy-free diet while in the hospital with her crazy eating habits).  So we have removed all of these foods from her diet to see if it helps her rash.  It is hard to keep her on this diet, especially when we aren’t always in control of what she eats, but we do think her rash is starting to look better.  We’ll keep her on this diet until her rash heals and then see if we can add those foods back one at a time to see if we can identify the problem food.  We don’t know what else to try.  We have the steroid cream from the dermatologist, but I REALLY hate using steroids to improve this - because when we take the steroids away, we’ll still have the problem.  And the cancer doctors don’t believe their medicines caused this rash.  So we are trying to figure it out on our own.
  • We have been doing lots of research and are finding lots of studies that we’ll discuss with Brianna’s doctors.  We are trying the diet changes.  Leaky gut can cause other health issues.  When we think of Brianna’s past three years, she has had chemo that clearly affects her gut (routine constipation and diarrhea), she’s had IV antibiotics any time she had a fever, she had antibiotics every time she took steroids to prevent UTIs and she had antibiotics every time she had an ear infection, a sinus infection, a sore throat, etc.  Her poor gut has been under constant attack.  When the gut is attacked, foods that are normally digested by the good bacteria in the gut can leak out because the good bacteria aren’t there to do the work - which causes antibodies to be produced and then she reacts to foods that she eats and has health issues develop.  Eczema is frequently caused by an unhealthy gut.  So we have removed the most well-known triggers in an attempt to heal her gut and heal her rash.  Brianna clearly has a weak immune system - she’s had chemo and she has Down syndrome.  I found some studies that said children with Down syndrome have lower levels of zinc and selenium.  We are giving her a multivitamin with these minerals.  We may also discuss with her doctors to see if she needs additional supplements of these minerals. While looking at immune boosters, we are also looking into EpiCor.  Don’t know yet if it is approved for children or if she would be at greater risk with her weakened immune system, but we’ll look into that.  Very frustrating and hard work - but we HAVE to find something that will help Brianna.  
  • Brianna’s counts came back this month and her white count is in the NORMAL range!!!!!  Just over 9000.  It hasn’t been normal since prior to her diagnosis in 2007.  Her platelets and ANC were also normal. Her hemoglobin was actually a little high.  Makes me nervous that her bone marrow is not functioning properly, but since I haven’t heard anything from the doctors, I’m not going to panic for now.
  • We LOVE seeing our local doctor for monthly checks!  It is so nice to take her to the doctor after school instead of taking an entire day.  And we love her doctor!  It is nice to be home.
  • Emma and I were still feeling under the weather during Dance Marathon so we didn’t get to go this year.  Doug and Brianna went for a little bit and spoke to our family representative’s morale group.  They had a bouncy house in the family room so Brianna was excited!  The University of Iowa dance marathon students are just the best - absolutely amazing!  They broke another record this year and raised over $1,058,000!!!  Thank you to all who donated and thank you, dancers!  This is such an amazing group of students and they truly participate because they want to help - they do it For The Kids!
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  • We hope you are staying warm and healthy.  We are ready to be done with snow!
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