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.

Reflecting Back

Morgan had bloodwork done on Friday to see how well her body is responding to the Neupogen injections.  In spite of getting poked twice, she did a great job!  I think she is getting used to all the blood draws.  We got a call from the hematologist Friday evening.  Dr. Grayson said he “was very happy to say that her neutrophil level is 1580 and her overall white blood count is 9000.”  We were ecstatic to hear that especially since it was 0 a couple weeks prior.  This is exactly where he wants her neutrophil level and so we are going to stick to the same dosage for now.  She will do blood tests weekly as we watch what her levels are doing.  Hopefully in a couple more weeks , we can start having playdates again. 

This whole process has been somewhat isolating.  We haven’t been to church regularly in the last year because Morgan was getting sick every time she went to the nursery.  This is a stark contrast to my life when I was pregnant since I worked full-time at our church.  Also, we haven’t had playdates with friends in a couple months.   I think God has done that partly to force me to draw closer to Him.  I’m just sorry that my little extrovert can’t see her friends these days.   I look back and know now why I didn’t feel comfortable taking her certain places or why I have been obsessive about germs.  That’s the kind of mother Morgan needed and God is so faithful to speak to us through our “motherly instincts”.   It’s nice to now understand why she was always getting sick and that I wasn’t just an “overprotective first time mom” as someone told me.  I can even see how the milk allergy and reflux played into this because I think it was good preparation for the three of us.  Now, that I look back, I can say to God, “Oh, I get it now.”  My heart longs to serve Him in some capacity but I understand now why God has wanted me to focus all my time and energy on Morgan.  God is doing some exciting things and He has some really big plans for my little girl!


Morgan has had more energy than ever.  Her favorite activity is chasing the dogs with her lawnmower.  She starts laughing so hard she can't stand up straight.  Today she put on one of her shoes by herself and decided to walk around with one shoe on for a while.  I found out I have some thyroid issues last week, so hopefully the medicine kicks in and I can have more energy to keep up with her.  She says several words but also has her own language too.  We tell her "I love you" often and Morgan says I love you by saying "AYY-yah".  It's pretty funny and there is no doubt that is what she means.  She has also started to sleep a lot less and her nap has now moved to 3pm instead of noon.  She seems much more contented now that she feels better.

From 6 past blood draws from her old pediatrician, I calculated the ANC’s.  In August of 2011, she had an ANC  of 2500 which is outstanding.  Then, it kind of goes downhill from there.  I think she has had this since at least October of last year.  If that is the case, she has already had it 8 months.  So, I am starting to pray that Morgan goes into remission early.  I guess we would know by the weekly blood draw counts and another antibody test when the time comes.  I have tried to network with other moms of kids with Autoimmune Neutropenia.  There are about 14 active AIN moms on a Babycenter board I found and 3 of them have kids with anc’s low enough to be on Neupogen regularly.  Hopefully, I hear back from them as I have questions like “Will she get sick as often as she did before or will it just not be as severe or both?”  I guess I am interested to see what our new “normal” will be in a few weeks.   God has brought us a long way in a short time period and I’m sure He will continue to do the same.

During the past month, I don’t think I have ever heard the Lord speak more clearly to me.  It has been amazing how God has communicated to me very specifically through His Word. During the week we were waiting for her diagnosis, I literally felt as though God had a protective spotlight of his love and peace on me at all times.  I’ve spent years in seminary classes but I have learned more about His character in the last few weeks than any time in my life.  I could spatter off a whole plethora of verses that God has emphasized to me but the ones that are heaviest on my heart right now are 2 Cor. 4:16-18. “ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”  

Neupogen

On Friday morning, we went to see Dr. Grayson in Temple.  Morgan has been in a great mood this past week and has come a long way since our last visit to Temple.   She had a lot of fun playing in the exam room and looking at the animal pictures on the walls. 

Dr. Grayson explained that the Autoimmune Neutropenia is not caused by a lack of neutrophils being made in her bone marrow.  There is actually an antibody in her bloodstream that kills her neutrophils which is why her counts are so low.  Autoimmune Neutropenia occurs in 1/500,000 and there is no known cause.  Fortunately, he said she will grow out of this by the time she is school-aged and probably sooner!!! 

In the meantime, we will give her Neupogen injections three times a week.  The Neupogen causes her body to make more neutrophils to compensate.  On Fridays, she will get blood taken in town to monitor what her levels are doing.  Hopefully in a few weeks her white blood counts will be at a normal level.  Until then, she won’t be able to play with other kids and we just need to be really careful about where we take her.   We are so fortunate for the injections as her low levels can put her at a high risk for deep skin abscesses, pneumonia and mouth sores (which she already has had). 

The only negative side effect to the injections is that it can cause some bone pain and headaches.  She was irritable after her first injection but she has two incisors coming in, so it might have just been her teeth bothering her.  Pray that her levels normalize soon and that she doesn’t have any side effects.  Thank you so much!

We have a Diagnosis! :)

I was laying on my bed praying during Morgan's nap and unexpectedly, Morgan's hematologist called.  He said he already had the results of the antibody test.  He had some excitement in his voice when he said she is positive for the antibody.  That means that her bone marrow is creating antibodies that are attacking her neutrophils.  The reason her counts are so low is that she is making neutrophils but her body is killing them off before they can mature.   It is called Autoimmune Neutropenia or Chronic BENIGN Neutropenia.  The GREAT news is that she will grow out of this by the time she is school-aged.  In the meantime, Dr. Grayson said there are some injections we can give her to help her not to get sick so much.

This is such an answer to prayer that she does not have the more serious kinds that can lead to cancer.  We have SO much to be thankful for and God has been so faithful to us!  We are also overjoyed that we do not have to do the blood draws.  We go to Temple on Friday at 10:30 to find out about the injections and to find out more about the Autoimmune Neutropenia.  We are so relieved!!!  Thank you so much for your prayers.  This is a huge weight that has been lifted off our shoulders.  We can't thank you enough for your prayers, love and support!

Rough Morning

 I just found out her bloodwork still has not changed (0-70).  

  I'm so frustrated and upset.  I found old bloodwork that said that she had neutrofils levels at 2500 at nine months.  Also it said her levels were 700 just two weeks ago - april 12.  There was another set I found from several months ago that said her levels were 900.

Morgan's new blood draws have all shown so far that there has been no change in her neutrophil levels.  I just got a call them saying that yesterday's blood draw was 64.

I got copies of the old cbc's from upa and found out that there are at least three occasions that Morgan has had neutrophil levels over 500 in the past.  In August of last year (at 9 months) her counts were 2500, which is well in the normal range.  It also shows that her level was at 793 on April 12, 2012.  I told the hematologist this yesterday and he said "At this point we can probably  assume she doesn't have the congenital and that we are looking at AIN, cyclic or transient."  He said we just need to see what all the results show in the next few weeks.

I'm having a rough morning for some reason.  These low levels this week make me keep wondering if it is congenital. 

We find out at by the end of this week what the results of her antibody tests are.  A possible explanation for the low levels is that she has the Autoimmune type.  This is where the body kind of has an allergy to her neutrophils and are killing them.  This is actually not such a bad thing bc it always goes away by the time they are 5 years old at the latest.  Also, the injections can help in the meantime.  The antibody test might tell us this.  It has a high rate of false negatives.

Morgan has been on bactrim a lot in the past and I was on it a lot when I was nursing her.  This can also cause neutropenia.  I gave her two doses last weekend for the sore in her mouth because I was desperate.  I am wondering if that has anything to do with this.

Pray that I have a peace about this and that I can rest in what the doctor said.  We are so thankful that Morgan is in a great mood and eating well.

Neutropenia 101

I didn't find out a specific number for Morgan's neutrophil level on Friday but the nurse said the percentage indicated no change.  HOWEVER, I talked to Morgan's previous pediatrician yesterday afternoon.  It turns out that Morgan has had normal neutraphil levels in the past from previous bloodwork on at least 3 different occasions (over 500). She said it seemed to go up and down.  On Tuesday, the hematologist said that the Severe Congenital Neutropenia is when her levels from birth are not capable of going over 500.  So, he hasn't confirmed it, but from what he told us Tuesday, and everything I have read, it is pretty safe to assume that Morgan does not have the severe neutropenia since she has had normal levels in the past.  This is of course a HUGE answer to prayer and I definitely am breathing easier!

I would be remiss to tell you about this experience so far if I didn't tell you how God has embraced us as we wait on test results.  The morning after we came back from Temple, I felt like the wind had been knocked out of me.  I spent some time in the Word and God was faithful to show me that Morgan will make it through this ok, that he has big plans for her and that good things will come of this!  He didn't need to tell me that but He has been so faithful to comfort me through this process.

Please continue to keep us in your prayers.  Pray that Morgan does not get sick during the next four weeks of blood draws, bc if her fever goes over 101.0, she has to go to the hospital in Temple.  Pray that God comforts Morgan during the blood draws which are going to be in her arm, instead of doing the finger prick.  Also, keep Jeremy and I in your prayers as we need to be strong for her and trust in Him.  Thank you so much for lifting us up!

Here is a summary of the different kinds of neutropenia by most common first:

1.  Transient Neutropenia - Not Inherited. The neutrophil levels stay low for a certain amount of time and can be treated with injections before it goes away on its own.

2.  Autoimmune Neutropenia or Benign Chronic Neutropenia - Not Inherited.  This is where the blood's antibodies are actually attacking each other.  The neutrophil levels stay low for a certain amount of time and can be treated with injections before it goes away on its own, usually before age 3-5.

3.  Cyclic Neutropenia - Happens in 1-2/million.  Inherited.  My understanding is that she has it all her life but it tapers significantly at puberty.  This is where every 21 days she will have a 3-7 day drop in her neutrophil level where she will be susceptible to infection.  The injections make the amplitude of the sin wave higher and the waves shorter and more frequent.  With the injections, she would still have lows but she would recover faster than if she didn't have injections.  This is the one think she has based on her symptoms and the fact that my mom and I were in the hospital a lot as kids. http://www.medicine.wisc.edu/~williams/cyclicneutropenia.pdf

4.  Severe Congenital Neutropenia - Inherited. 1/million. Neutrophils don't go over 500 from birth.  We don't need to worry about this one.  :)

Blood Draw 1

Today is Morgan's first time to draw blood after the initial testing.  Basically, she will have her finger pricked today and then every Monday, Wednesday and Friday for the next 4 weeks.  We go at 2:30 today and Grammy and Pop Pop are coming along.  It probably won't be much higher than Tuesday because it hasn't been long enough.  However, if it jumps over 500, it automatically eliminates the most severe kind.  So, we are prepared for it to stay the same since it hasn't been long but God told me to be brazen in my prayers so we are praying for it to be over 500.  We will get the result back this evening or tomorrow.  If the level stays low, we still have to just hurry up and wait.