Status Quo...again

It's been quite a while since I've posted - so I thought I'd make an update in the same format as my last post.  

Autoimmune Neutropenia - Morgan's neutropenia is still active but fortunately she has the type that she will probably go in remission from - we just don't know when.  Instead of three injections a week, Morgan gets daily injections now which is helping a lot with her bone pain.  Apparently, the bone marrow expands and contracts with the Neupogen and the three larger doses made her moody and we were having to do motrin/tylenol daily.  Fortunately now with the daily injections, we aren't having to do pain killers all the time.  The smaller dose also doesn't sting as much.  There have been a couple times that we have  taken Morgan off the Neupogen to see if her body could sustain normal white blood cell counts.  She was much more content and in a better mood but unfortunately her ANC went back into the severe range.  At our last hematology visit, our hematologist mentioned this could be something she could have until she is in adolescence.  I certainly hope that is not the case but its is a much better alternative than other diseases she could have.  We still do weekly blood work but we have gotten to know a lab tech that Morgan loves named Serenna.   She is a Godsend!

Neupogen - I have a love/hate relationship with Neupogen.  With it, Morgan does not get mouth sores, she is protected enough to be around other kids and goes to MDO twice a week in the spring and fall (MDO is her favorite thing and she is our little social butterfly).  On the other hand, Neupogen causes her to be nauseous or somehow causes her not to eat much.  I have talked to two pharmacists and other moms of kids with AIN that have told me nausea is a common side effect.  Unfortunately, our hematologist thinks the Neupogen has nothing to do with her eating but that's a whole other story.  >: /  Morgan still eats no fruits and vegetables and in the last two months has dropped all meats.  I'm concerned because two weeks ago she stopped eating cheese.  Fortunately, she is getting protein and fat from milk so that's good.  I have her on supplements to augment the nutritional gaps, which include a probiotic, fish oil, and a vitamin/mineral liquid supplement.  My mother-in-law Kathy has been kind enough to buy us an antioxidant juice drink which we believe is helping her levels.  All of these things are a challenge to get into her but I feel like proper nutrition is important for her to reach remission.  Also, Morgan is not a happy camper when she hasn't eaten as the case with all 2 year olds!

Spiritual Growth - God is good.  I know that Neutropenia plays a role in making Morgan who God wants her to be.  I know that with my head but at times I have trouble embracing that in my heart.    As I said in my last post, I have never been closer to God and he daily trains me to rely more him especially in my weaknesses - and there are a lot of them!    I still really enjoy writing my blog www.theupwardcall.com .


Part-Time Job - I'm still doing And Sew On's social media and love working with Jennifer.  She is such an inspiration to me.  I'm also going to start doing bows again to help with our budget a little more.

Jeremy -  My better half is doing well and puts up with me as usual.  We just celebrated our 10 year anniversary.  Hard to believe!  I don't deserve him and probably never will.  He is such a good husband and daddy.   Morgan and Daddy go to look at airplanes at the airport and also go look at puppies and kitty cats at the air port on a regular basis.


Prayer Requests - Please keep us in your prayers as Morgan's neutropenia is still a mental and financial struggle for us.  I struggle a lot with the stress of Morgan not eating.  All in all, we have come a long way since last year at this time and we are very blessed.  Thank you for your prayers and support.  Above all, pray that Morgan goes into remission soon, but that God is glorified through her neutropenia in the meantime.

Spilled Milk

It's 3 a.m. and Morgan is up because her milk spilled on her pillow.  Last March at this time, I was up because  Morgan had her first very painful neutropenic mouth sore - although we didn't understand what it was at the time.  What prompted my post at this hour was browsing over old facebook posts from last March/April and realizing how far God has brought us since that time.  Before reading those posts a few minutes ago, I was in a crummy mood about having to get up with her.  Now I realize how much better our lives are now as now those mouth sores are just small scars.  In retrospect, there is definitely no use in crying over spilled milk.  ;)

Autoimmune Neutropenia - Morgan's neutropenia is still active but fortunately she has the type that she will probably go in remission from - we just don't know when.  Morgan gets injections 3 times a week and bloodwork once a week.  We are averaging about 2-3 visits to the pediatrician a week as we stay on top of bugs.  We are very blessed that she has gotten nothing more than a cold or virus since starting injections.  That is a HUGE reason to be thankful.   We are also very fortunate that Morgan has never been to the ER.  I started an AIN facebook page with over 50 AIN moms and I haven't heard of another kid that has never been to the ER - most have been over 10 times.  In April, we will do another antibody test to see what the status is.  Her last two weekly blood tests showed her ANC was 2300-2500 which is in normal range.  The Neupogen injections are a Godsend.  When we started this process, her ANC was 0, giving her no protection against the bacteria on her own body.

Spiritual Growth - My walk with the Lord has grown immensely through this trial.  He has helped us every step of the way.  I didn't expect for Morgan to be able to even do playdates with friends at this point and now she goes to MDO (Mother's Day Out) twice a week.  God is SO good.  I have started a devotional blog called The Upward Call and I love writing it.  God is faithful to give me something new each week.  I feel like I should write some sort of spiritual synopsis about how far God has brought me but its just not happening at 3am.  So, I'll sum it up by saying that God is amazingly gracious and has led us along every step and bump in the road in this journey. He is SO God.

Mother's Day Out - Morgan is quite the extrovert to the point that her self-appointed role is to be the class greeter, hugging every classmate as they arrive.  That makes me a little nervous from a neutropenic standpoint but she has done so well and the shots are doing their job.  I have a lot of faith in her teacher Brooke who is also a fellow germaphobe.  Morgan absolutely loves going to "school' and as this Spring Break has proved, she is not a happy camper when she can't go.

Women's Conference and Women's Ministry - I am planning a Women's Conference on April 20th, which interestingly enough, is a year from Morgan's diagnosis.  The conference is entitled From Fear To Faith and the theme verse that God laid on my heart is Isaiah 41:10, "Do not fear, for I am with you.  Do not be dismayed, for I am your God.  I will strengthen you, I will help you.  I will uphold you with my righteous right hand."  I'm excited to how God will use the conference and my prayer is that our speaker will be God's mouthpiece to every woman there.  A few months ago I became our church's Women's Ministry Director.  I am very excited about this role and how God is leading.  There are some amazing women on our team and I'm blessed to serve with them.

Part-Time Job - Due to the expenses of Neupogen, we came to the conclusion that I needed a part-time job.  God provided the PERFECT opportunity.  I am working at And Sew On and the owner is an amazing Christian lady that goes to Central.  I am basically doing their social media from home.  I am really enjoying it!

Jeremy -  My better half is doing well and puts up with me as usual.  He loves his job at Gessner Engineering and this year became his engineering team's lead engineer.  They are getting a lot of projects in which keeps him out of trouble.  Jeremy continues to be an amazing husband and daddy and is always a big help.

My Parents - Baaa (like the lamb) and Pop Pop have lived in their home in College Station for a year now.  It is hard to believe and I don't know what I would do without their help.  We go over there regularly and Morgan enjoys playing with their puppy Holly.  "Hotty", as Morgan calls her, is a five-month old Miniature American Eskimo puppy. She is a really sweetie but is a little stubborn when it comes to potty training!

Prayer Requests - Please keep us in your prayers as Morgan's neutropenia is still a mental and financial struggle for us.  I think I have a layer of stress that normally wouldn't be there because of her disease in general, her shots, blood draws and dr's appointments.  This puts stress on our family as a whole.  All in all, we have come a long way since last year at this time and we are very blessed.  Thank you for your prayers and support.  Above all pray that Morgan goes into remission soon, but that God is glorified through her neutropenia in the meantime.

Morgan is 27 months here.

Life's Interruptions

Well, I guess the adage that “No News is Good News” applies to our blog.  Things are going great overall and Morgan has been doing lots of fun things now that her ANC is high enough with Neupogen.   Morgan is at a really fun stage at 21 months.  She doesn’t talk a whole lot but she can repeat most words back to me.  I have caught her saying a couple of two-word phrases too like “Bye KAY EE” (Bye Katie).  She is really something else and LOVES time with her friends. 

I was definitely on the fence about whether to start one day of MDO this semester.  I just wasn’t sure how she would do resistance-wise but knew she was ready socially.  So, I put an email into the MDO director the weekend before it started for Wednesdays.  She emailed me back and said she had just had one cancelation in Morgan’s class and for Morgan’s day.  Taking this as a God-thing, we went ahead and signed her and she absolutely loved it.  She even slept on her nap matt which absolutely amazed me.  Her BFF Adalyn is in her class too so that makes it even more fun and brings me peace of mind knowing she has a familiar face in her room.  I think if Morgan had it her way, everyday would be MDO day. 

Things are starting to become more normal although we aren’t completely there.  Morgan had stopped taking naps for a while and then started back up.  Then she stopped again a few days ago.  It was obvious she was exhausted but just could not sleep.  I called her hematologist and we got her blood results back that her anc was very high.  He said that she probably couldn’t sleep because of some bone pain.  So, we lowered the dosage.  Hopefully, it doesn’t go too low and this will be a better combination of a higher frequency and a lower dosage for her.  Regardless, she is going from .21 ml of Neupogen to .15 every other day.  That’s a pretty good jump and I like that we are moving in the right direction.  The Neupogen has been a God-send but it’s an awfully big drug for such a little girl.  The less we have to use the better!

I have started leading an Inneract group this week and we are doing Priscilla Shirer’s Jonah.  Mama even came and is in my group.  J I am also on the Women’s Ministry team at church.  Wanting to get back into ministry was like an itch that I really needed to scratch.  It feels get to start the process.  On the other side of regaining normalcy are some health issues of my own that we are trying to work on.

I mentioned in an earlier post that I have started a facebook page for AIN moms.  It is up to almost 30 members which isn't a lot but its provided a source of feedback and encouragement.  I have also gotten to share about how God has worked and hopefully provided some support to newly diagnosed parents.  It has made me aware of how fortunate we are.  We have never ever been to the hospital while some of those families have been been dozens of times.  I would say the average is about 6 times.  In spite of Morgan's levels being the lowest I have heard of, she has been able to mount a response somehow.  God has really protected her, especially in the six months before being diagnosed.

The whole premise of the Inneract study on Jonah is that often life’s interruptions are God’s divine interventions.  This has really hit home with me as far as Morgan’s Autoimmune Neutropenia.   As you know, I am a habitual planner and this didn’t fit very well into my plan or my plan for her.  However, I know that God has a plan for all this.  I put on a happy face most of the time and have gotten good at it.  I remind myself that fortunately, we have MUCH more freedom than we had before and I am not nearly as stressed about germs.  For example, as I write this, she is playing in the dirt with measuring cups and spoons.  I never would have let her do that 2 months ago.  Three months ago, we hardly went outside!  Because of the injections, she has also not had the recurrent MRSA infections on her skin and the deep sores in her mouth.  She even sleeps through the night most nights now(Thank you Jesus!).  In the big scheme of things, things are much better.  God has told me more than once that He knows the plans He has for her and that he will not harm her – that she will come out of this fine.  I know that in my mind but on some days my feelings don’t always come face to face with that promise – It so frustrates me that she has bone pain, I hate seeing her get injections, I can’t stand taking her get bloodwork weekly, and I’d do anything to trade places with her as a human pin cushion.  

However....I try to remember that when our emotions haven’t gotten on board with God’s plans, that is where faith comes in.  The latest statistic I heard was that 90% of children grow out of this by age 5.  That is a really good statistic and we have already come a long way.  However, I’m trying to remember that faith begins where probability ends and we might even see remission before then.  One day I will look back and see this fully as a Divine Intervention instead of an unfortunate interruption.  God has some big plans for my little girl!

Well, I guess I better give Morgan a bath as there is now more dirt on her than in our backyard.  At least she didn't try drinking out of the birdbath today.  :)

Social Butterfly

Now that Morgan's levels are stabilized with three 0.18 ml injections of Neupogen a week, Dr. Grayson told us, and even encouraged us, to get her around kids more.  I asked how her immunity compares to a kid without Autoimmune Neutropenia.  He said it is as good or better and explained that the poison that kills bacteria in the blood is stored in granules and with the Neupogen, supposedly her poison is more lethal to bacteria.  He said she will still get viruses like any other kid until her immune system builds up the memory in order to fight them but she should have much better immunity against bacteria than previously.  (Neutrophils' main role is to kill bacteria).  SO, our new protical  if/when she gets sick is to get her into our regular pediatrician when she has a fever over 101.  Then, they can give her antibiotics and give her a bloodtest.  That was the best news we have heard in a while!

The irony is that if her ANC (absolute neutrophil count) levels had not been so low in the beginning, she would not have been a candidate for the Neupogen.  About 1/100,000 kids have AIN and I would estimate that less than 10% have levels low enough to be on Neupogen.  The Neupogen has really been a blessing because its allowing us to do some things that we wouldn't have been able to do.  We are extremely blessed - first of all that Morgan does not have the type that can be a precursor to leukemia AND many kids with what Morgan has have already had several trips to the hospital.  Even with her extremely low numbers (0 at one point), God has kept us out of the emergency room!

Our routine every night as I give Morgan her bath is that I pray God will also wash away the antibodies that are killing her white blood cells.  We are so thankful that she has the type that she WILL go into remission.  The timing is just up to God.

I have started an Autoimmune Neutropenia facebook page for parents of kids with ain.  There are only about 20 members but my goal is to be a source of encouragement and information.  It's so hard at first because there are very few with this disorder.  Also, I have found that many moms can be very discouraging as they don't trust their child's doctor or ours for that matter.

We are both becoming more social, especially Morgan.  She has been to Inneract childcare twice.  The first week she went around giving all the other kids a hug and kiss.  Last week, a friend of mine said she heard a little girl shreaking excitedly.  Sure enough, it was Morgan shreaking for joy and clapping her hands.  She also likes to show them her dance moves.  Morgan is such a little extrovert and I'm glad she can start to get around kids again.  She has such a loving personality as she always gives us kisses and says "I-ya!" which is how she says "I love you."  She has already cut through two of her two-year molars so that hasn't been much fun but at least there are only two more to go.

I'm also enjoying my Bible study and will actually get to lead one of the women's small groups in the fall.  I have really been itching to serve in ministry again and it is something I have missed.  With that said, I'm no longer going to be selling hair bows on etsy.com or facebook.  It was a great way to earn some extra money while we are stuck in the house, but its time to move on.  Morgan will of course have the cutest hair bows in town!

My parents are officially moved into their new home in Woodcreek, just north of the new hospital.  The house is absolutely gorgeous and its pretty surreal that they are there.  Their house has probably more trees than any other in their neighborhood so the back yard is a bird sanctuary of sorts.  Of course my mom loves that!  Their yard and house has already been host to three different nests in the last couple months - barn swallow, mourning dove and wren.  Needless to say, the yard is very Lumberton-esk but not nearly as hard to mow.  God is definitely in the details.

Other than the obvious benefits of them being here to spend time with Morgan, we have also inherited some of their slightly used appliances that were either from the rental house or their new home.  It has been SO nice to get some new appliances in.  Our oven was original to our house and wouldn't even maintain temperature so now we have a much nicer one!

Due to Milk Spill 2012, we had to pull up the carpet in Morgan's room. Basically, a sippy cup of milk was left under her crib and spilled.  After lots of attempts to get the smell out, we gave up and I replaced it with the same flooring in the rest of our house.  It was definitely time to get the old carpet out of there.

So, we have lots of exciting changes in our lives.  Hopefully our next post will include details on getting Morgan out even more.  Thanks for so much for your continued prayers!

Face to Face

Black and white images streamed through my head as I tried to remember every detail of what had flashed on the screen the previous day.  The hand I would one day hold while crossing the street, the foot that I would tickle and the little back I would pat: these were all visions that I eagerly anticipated.   As telling as that moment was and as fortunate as I felt to have had it, something was missing.  I began to bite my lower lip as I always do when I get impatient but suddenly my thoughts were interrupted by a smiling nurse calling my name.  Pleased I wouldn’t have to clock anymore time in my obstetrician’s waiting room for the week, I followed her to the ultrasound room.  I was about to see the missing piece of my puzzle!

The day before, Jeremy and I had gone to get my 20-week ultrasound to find out the gender of the baby.  As rookie parents, we were so very relieved to hear the nurse finally tell us that everything looked as it should and our baby was healthy.  Then came the moment of truth that we had been waiting for.  To our surprise, she told us our baby was actually a “she”!  For some reason, we thought Morgan was going to be a little boy but of course we were overjoyed that in fact we I would give birth to a baby girl.  Of course, this put a kink in my plans for our son to become the next “Billy Graham” but of course God has even better plans ahead my Morgan.

As much as we had enjoyed seeing our little girl for the first time, she would never turn her little head to the correct angle to catch a glimpse of her face.  I told Jeremy how frustrated I was about missing this important “detail”.  So, my impatience got the best of me and I made another ultrasound appointment for the next day.  This time I was determined to see my daughter’s face for the first time.

                                       ___________________

In Psalm 27, David writes: “You have said, ‘Seek my face.’  My heart says to you, ‘Your face, Lord, do I seek’.”  Earlier in verse 4, he writes “One thing have I asked of the Lord, that will I seek: that I will dwell in the house of the Lord all the days of my life, to gaze upon the beauty of the Lord and to inquire in his temple.”

 I always wondered why David used the word “face” instead of just referring to the Father directly or to another part of God like his “hand”.  Why is it so important to see his face specifically?  The answer came to me as I sat in that waiting room.  I kept wondering why I was so obsessed with seeing the face of my little girl.  I certainly wouldn’t have made another appointment if I hadn’t seen her foot or an arm. However, I realized it’s a person’s face that makes them uniquely special and different from any other individual.  One notices new characteristics about someone as time is spent in their presence appreciating their very countenance.  Their specific attributes are often never detected upon first glance, but are often observed as their face becomes more familiar.  In Psalm 27, God is telling David to seek His character and favor – to seek the very essence of who God is.  There is no fault in seeking God’s hand by seeking His blessings or direction, but here God wants David to specifically seek His face, to gaze up the beauty of His Godness.  To seek God’s face means to immerse oneself in His character and to meditate on His precepts. 

John 14:21 says “Whoever has my commands and obeys them, He is the one who loves me.  Whoever loves me will be loved by my Father, and I too will love Him and show myself to Him.”  In other words, if we love God, we spend time with him and in turn God reveals more and more of Himself to us.  God must reveal himself if people are to see his face.  In Job 34:29, the Greek word for “revelation” literally means “removing a veil from one’s face”.^[1] That’s why it is so vital to make time to sit in His presence and mediate upon His Word.  Time with God can’t be rushed like every other aspect in our lives.  When we are in a hurry, our minds flutter back and forth between God and the tasks on our “To Do” list.  However, God wants us to push back the demands of life to create time to rest with Him.  He demands this time of focused attention to bless, strengthen and equip us for what is ahead.2  There is no wiser investment than making a daily appointment to spend time with God.  He faithfully rewards those who seek Him by showing them more and more of His character.

                                          __________________

The second ultrasound appointment proved that Morgan once again was not in the mood to get her picture taken.  She seemed to squirm in every possible direction but she wouldn’t lift up her head towards the “camera”.  The nurse said “Well, it looks like we just aren’t going to see her face until she is born.”  It was right then that Morgan happened to lift her head up suddenly in time for the nurse to snap the picture she needed.  Her timing was perfect and so was what I saw.  I realized I was looking at the face I would stare into for the rest of my days.  It was my first glance of what would turn into years of long gazes as I would see how God would grow her into the woman He wants her to be.

I’m sure to some that the ultrasound picture was unrecognizable.  However, as I have looked at this face over the last 18 months, it becomes clearer to me who my daughter is – a true blessing from our Creator.  The same can be said about gazing upon the face of God.  Although our first glance might not have been so clear, we grow so much closer to the One who knows us better than we know ourselves.   The Father of Abraham, Isaac and Jacob is the same yesterday, today and forever and He has immeasurable blessings for His children.  He wants them to seek a relationship with Him by making a regular appointment to seek His Face. 

   

---

^[1] Manser, M. H. (1999). Zondervan Dictionary of Bible Themes. The Accessible and Comprehensive Tool for Topical Studies. Grand Rapids, MI: ZondervanPublishingHouse.

² Young, Sarah. (2010),  Jesus Calling, Grand Rapids, MI: Thomas Nelson, May 30.

Looking Up!

Morgan just turned 18 months and is a real ham.  The other day Morgan had  so much fun playing in the dirt and with sticks outside.  Then she wanted to play in the dog water.  I got her to come in and she went straight to my makeup table.  She sat there and opened my blush compact and put blush on both cheeks by herself!  So, I guess she is a girly girl and a tomboy.  My Morgan has quite the extroverted personality.  When we go to our weekly blood drawers, her game is to wave at as many people as possible as they walk by.  She also has a temper and I can't imagine where she got it from.  :)  When she gets mad she pulls her bow out of her hair and throws it on the floor.  If I don't see her throw it on the floor, she picks it up and throws it again to get her point across.  She is really something else and I just do my best not to laugh in those moments.

Morgan’s ANC went down to 200 last Friday which is not good.  However, we did injections three days in a week this week and now it is 17,000!  It is great to know that her body is very receptive to the injections.  Her hematologist switched her to getting four injections a week but hopefully we will get down to 3 again soon.  He said it is just a process of trial and error to get the proper dosage.

Our new protocol for her getting sick is that if her fever gets to 100.4, we are to call the hematologist.  Depending on her levels at the time and other symptoms, they may tell us to either wait a few minutes to see if it goes down, go to our pediatrician, go to see them in Temple, or go to the ER.  So, we just take her getting sick on a case by case basis.  This is much better than before she was on Neupogen where we had to go straight to the hospital in Temple if she ever got over 101.  However, I’m pretty much scared to death about her getting sick.  I know it seems silly but my biggest fear about her going to the ER is the IV splint.  They have to put an arm splint on toddlers when they get an iv.  Morgan goes BALLISTIC with even a band aid so I don’t think she will handle an IV well. 

For now, we are keeping playdates to one-on-one and only one or maybe two a week.  Also, she can’t be in any enclosed areas with a lot of kids so the church nursery is not an option.   This new careful lifestyle definitely adds a new level of stress to most things we do but all in all we are SOOO fortunate that she doesn’t have one of the other forms of neutropenia.  I always tell myself that Autoimmune Neutropenia is merely an inconvenience considering what some other families are going through.  This has been a very eye-opening experience.  Every time we go to the hematologist, we see a child getting chemo.  We are SO fortunate!

Overall, things are looking up and we have come a long way in the last couple months.  Kristy and I are meeting once a week and it’s nice to talk with someone that can relate.  We were sitting at Jason’s Deli last week and I heard a kid behind me with a horrible cough.  I gave her a look like “oh crap!” and she started to laugh.  Then we started talking about lifespans and incubation periods for various bacteria.  It was nice to converse with someone that is as OCD as I am these days.

Also, I started a Facebook page for Autoimmune Neutropenia.  It only has 9 members but I’m hoping that I can be encouraging to some moms that are just now finding out about their children having this. 

Jeremy also likes to remind me that since Morgan has been on the Neupogen, she has never slept so well!  This is the first time ever that she has slept through the night consistently.  It’s pretty stinkin’ amazing to get some real sleep!  Also, Morgan is obviously going to feel better when she gets more sleep.

Here are some recent pictures of my baby.  Enjoy!

Ups and Downs

Here is an overview of Morgan’s ANC (absolute neutrophil count) with the Neupogen injections.  For those of you that just tuned in, neutrophils are the most prominent white blood cells that serve as the front line of defense against bacteria.  Severe neutropenia is 0-500, 500-1000 is moderate and 1000-1500 is mild.  A child under 2 has a normal count when it is over 1500.  Neupogen is a drug that causes her bone marrow to work in overdrive to make more neutrophils to compensate for the ones that her antibodies are killing off.  Morgan gets injections on Monday, Wednesdays and Friday evenings and we do bloodwork every Friday morning.  Dr. Grayson wants to keep her counts between 1000-1500.  Here are her counts from the first weeks of Neupogen:

Friday before Neupogen - 220

Week 1 – 1581

Week 2 – 2500

Week 3 – 300  (last Friday)

Wednesday morning of this past week – 600 and she was very irritable

Wednesday evening– started new vial of Neupogen   

Thursday – great mood and very content!

Friday(yesterday) – 4500 and very irritable

Needless to say, we were very discouraged on Monday when we found out her ANC was only 300.  We think she had a little stomach bug which could have lowered it.  She was really irritable Wednesday morning so I took her to the pediatrician to have her checked out and to have bloodwork done.  She checked out fine and her ANC was 600 something.  Dr. Grayson said this isn’t where we want it but fortunately it is moving in the right direction. 

I was so encouraged when she was in a wonderful mood this Thursday.  However, she was in a horrible mood on Friday so I thought her ANC had dropped again.  We were very happy to hear last night that it was actually very high at 4500!!!  This is actually too high but at least we know the Neupogen is working.  The high number also explains her recent irritability because Neupogen can cause bone pain and headaches.  We are giving her motrin to help with this.

Obviously that is an extreme jump from 600 on Wednesday to 4500 on Friday and we think we know why.  I found a new friend in College Station whose toddler has tested positive for AIN also.  Actually, she found me through the Baby Center neutropenia board.  It is really a God thing that we connected.  We had dinner on Tuesday and are going to get together once a week.  Kristy is very well-read and has a good understanding about the latest research and challenges concerning kids with Autoimmune Neutropenia.  She told me that there is some controversy over whether to use the 1ml vials of Neupogen more than once.  The nurse at the hematologist’s office told us to use the 1ml vials over and over until each is gone and showed us how to use it “sterilely”.  However, Kristy showed me how the company clearly states that they are “one-time use” vials since they contain no preservatives.  My question was then if the reasoning was to prevent bacteria from entering the vial or because the Neupogen becomes less effective.  I called the same nurse the next day and she assured me it was only for sanity reasons and said the way she showed us to administer the medicine would keep things sterile.  

However, I talked to Dr. Grayson that evening who said that using the vial multiple times could actually decrease the effectiveness of the drug.  For Monday’s dose we were at the end of a vial, so we started a new vial on Wednesday and that explains the high number on Friday.  Therefore, the nurse was incorrect which caused several of Morgan’s injections to be ineffective or not as effective.  If Kristy hadn’t pointed that out to us, we would have kept wondering why her numbers were going up and down for no reason!  I’m so grateful to her because I would have been such a basket case.

The drug is very expensive which is why wasting the rest of a vial is an issue for a lot of people, especially for those without insurance.  In Morgan’s case, she only gets 0.17 of a 1ml vial.  A box of 12 vials (4 weeks worth using 3 a week) was $3400.  That comes to $283 an injection.  Fortunately, our insurance is paying most and we’ll of course do whatever we need to for our baby girl to be healthy and happy.

It is SOOO good to know that the Neupogen is doing its job.  We go to Temple on Tuesday for our monthly appointment.  He will probably tell us to lower her dosage or at least that is what we are hoping.  J  He also told us that as long as we fill up three syringes at once on Mondays, they will be effective for Wednesday and Friday’s dose.  I’m not completely sold on that idea since the Neupogen company clearly gives other instructions, but I will ask him more on Tuesday.

Jeremy just said to me how far we have come in the last few months.  We figured out why she was sick all the time.  We got a diagnosis.  We found an effective treatment and as of a few weeks ago.  Morgan is sleeping through the night. And more importantly, we know that she will spontaneously go into remission.  We know that this will come to an end.  God has been so faithful to assure me through this process – through His Word, through people, through songs, etc.  He is so faithful and He has brought us a long way.  One thing is for sure, our little girl is so special and he has some amazing plans ahead for our Morgan!  Please pray she goes into remission soon, and that we find the right dosage so she feels better.