Some Fun Times

The girls love being outside!!!

A headache on this beautiful Sunday

Second Update: This morning the fever is gone!! We are relieved. If it is viral, it may return this afternoon/evening. But, maybe it is gone for good.

Update: Now she has a fever of 99.8. Please pray it doesn't go above 100.4. She is fussy, and we are hoping it is nothing serious like an infection of her port that was accessed on Thursday.


Annabelle has a post infusion headache today. I thought we were clear of it, but it came on this morning. Please pray that it will respond to Tylenol. The first dose helped a little, but she has been fussy and not herself all day. She doesn't have a fever, but she randomly grabs her head and cries. We are a bit surprised. Normally, when she is pretreated with meds, she doesn't have any reactions later. I guess reactions happen on a case-by-case basis. Thanks for your prayers.

Monthly Infusion Tomorrow

Update: The infusion went very smoothly. Yay!! It was the best one yet (no known exposures to anything, no ripping out the IV line, no negative reactions, started by 9:00, home by 4:45pm). We are thankful for the helpful nurses there; they really try to help in anyway possible. Thanks for your prayers.

Tomorrow is our IVIG infusion, and we are hopeful that the day will go smoothly. We were able to work out some of the details of Dr. Pranzetelli's protocol that have been a struggle with our Neurologist and the clinic here.

Praises:
- Annabelle didn't get chicken pox from the last infusion.
- She has been completely healthy despite some colds and a small fever in the house.
- Her well-check up showed her height and weight were completely on target for her age at the 45 and 5o percentiles. There doesn't seem to be any growth suppression or weight gain from the steroids she is on. Praise the Lord.
- Developmentally she she is also doing very well. We praise God for his protection over her little body.

Please pray for:
- safety from germs.
- Annabelle to tolerate the infusion and the medications they give her to help her body accept the blood product without a reaction.

Thank you for your prayers and interest. I'll update you on how it goes.

Romans 8: 35
"Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution
or famine, or nakedness, or peril or sword"

Teacher Appreciation Week

Today, the women's ministry at my church delivered adorable cookie bouquets to teachers for Teacher Appreciation Week. They even delivered them to homeschool teachers! My bouquet had a tag that read:

"Thank you for following God's leading, and for all you put into your children each day!
"Let us not become weary in doing good..." Gal. 6:9

One of my loving students piped up and said, "Why are they giving you one? You're not a teacher." After I rearranged her teeth and she cried a bit ;), I gently explained that I AM a teacher even though my degree isn't in elementary ed. You see, I can even think sometimes that because I don't hold a degree in education that I am not a teacher. But when I became a mother, I became a teacher. And when my children were old enough, we added academics. Do I have great methods or delivery? Do they always get what I'm saying? Do they perfectly obey or get along? No, No and No. As I thought about being a "teacher" today, it humbled me to think that God has given me this responsibility and privilege. I don't feel very qualified or deserving, but I love to make an effort, pray for the outcome, and watch the Lord bless.

Thanks to the Maranatha Women's Ministry for the cookies and the reminder of Gal. 6:9! My "students" and I enjoyed the treat.

Fever In the House

Update - Wednsday, 2:30pm:
Alexandra came home last night. Thankfully, her fever was very mild and short lived. The rest of us seem to have minor cold symptoms - except for Annabelle!!! She is well. Amazing huh! Thanks for the prayers. God is so good.

Update - Monday, 2:00pm:
My mom came and took Alexandra to the doctor's for a strep test (Thanks Mom!). It was negative. She probably just has a virus. So, she will stay away until the fever is gone. Thank you for your prayers - we appreciate each one of them.

Sunday night:
Tonight Alexandra has come down with a fever 100.6. This amazes me - first because she has been out VERY little, and we are so careful about germ control at home. And second, of all people to get sick, I would think it would be Annabelle first with her low immune system. The bottom line is God in is in control, and we trust his plan. Alexandra is home tonight, and we will evaluate her in the morning and possibly take her to the doctor.

Please pray for:
- wisdom with what to do (quarantine her or send her to Gma and Gpa's).
- protection for Annabelle and the rest of us.
- healing for Alexandra.

Praise God:
- so far no Chicken Pox.
- Annabelle is doing so well (no real visible symptoms).

Stars on.... Pavement?

Olivia bought some roller blades which made everyone else interested in skating too. It is always fun to do what big sisters do:) Sometimes though, it is a little scary for the mom to watch!!

IVIG Update

Well, the day was a long (about 10 hrs) and proved trying. I keep thinking I have learned the meaning of trust, and the Lord keeps showing me there is much room to grow. We arrived at 8:00 and didn't start until almost 10:00. So in between that time was a lot of stress. I won't go into all the details, but I will share one. We forgot the lab slip from Dr. Pranzatelli at home. The blood had to be drawn before the IVIG was started, and it was going to be a seven hour infusion. If we didn't get started right away, we were going to have to be admitted to the hospital. So, since we had the special tubes for the blood draw just no orders stating what to do with the blood, the nurse went ahead and drew the blood so we could start the IVIG. She remarked, "this is a lot of blood to draw." I told her that Annabelle's blood clots FAST, and that we have had to do it twice in the past because it clotted before it could be put into the vials. She drew two large syringes and then a smaller one. As soon as she was done, I watched her put them in the special vials. The two large ones were fine, and the last little one clotted that quickly. The two large ones are what we needed to have for the research Dr. P is doing. It is a praise that the port worked, and we got all the important blood we needed. (Later the line pulled out of her port - not my fault this time - and and we were able to redraw the little vial then.)

A few more answers to prayer:
- We followed Dr. P's protocol (with a little urging).
- Her port worked well.
- We got the same room we were in last time.
- Annabelle got a little nap (in my arms - there isn't a bed).
- To date our insurance has payed for all of our treatments.

A prayer concern:
- A girl came to the clinic today (and we walked right by her) that had spots all over her that looked like chicken pox. They stuck her in a room right away, and called a doctor to come check her. This is very bad because everyone in the clinic is immune suppressed to some extent. The doctor said he didn't think she had chicken pox but probably something post viral. I am not a doctor, but when I saw her my mind screamed "chicken pox." The girl's mom thought it was chicken pox because she had been exposed at school. Either way, it scared me. I know God has every detail of our lives in His sovereign control, and I am trying to trust in Him. Please pray that God would continue to strengthen our faith.

Annabelle update

Hello and sorry it has been so long since I have updated you all. Annabelle had a doctor's appointment last Friday with her pediatric neurologist Dr. Lo. He is following Dr. Pranzetelli's protocol for treating OMS. Dr. Pranzetelli is a neurologist and the leading (there aren't many) researcher in the field of Opsoclonus-Myoclonus Syndrome and is located in Springfield, IL. Dr. P is the one who diagnosed Annabelle in early February. Anyway, Dr. Lo had not seen Annabelle since before she started treatment. He was very pleased to see her progress and admitted that he was uncertain about putting her through this treatment because his one other patient that he sent to Dr. P didn't show much improvement. Then he said, "She is lucky. Let's keep our fingers crossed." But we know that most doctors don't have much experience with OMS and each case is different depending on how severe it is and how soon and what type of treatment was prescribed. We are hopeful and trust God for whatever he has for us. We are just trying to enjoy each day and take none for granted. That being said, Annabelle had a great week last week with a slight improvement in the last 5 % of symptoms. It is very hard to "measure" improvement, but we think we see a bit of improvement. Please keep praying (not crossing fingers)! There is no luck - only providence.

As for the rest of us -

Peter is doing well at the helm. He helps keep the boat afloat with God's help and throws me a life preserver when needed. I've had a couple of those "I'm sinking" moments over the last couple of weeks. I found a Yahoo group for parents who have children with OMS. I was excited to read all the information I could and ask questions of families who have gone or are going through the trial of OMS. That took a toll on me spiritually and emotionally, as I felt like I entered into each families' traumatic situation and sympathized with them. I also found myself starting to WORRY that all that I was reading about might happen to Annabelle. Spending a lot of time on the Yahoo group also ate into my time for other things like posting on my blog! So, at the urging of the captain, I stepped back from reading and interacting as much as I was, and am doing better.

The other three girls are doing well handling the isolation. Olivia and I ran out to a store for an errand for the first time since before we started treatment (Feb. 11). She was thrilled to get out a bit. Now that we are through flu season, we will try getting out a little bit here and there with caution. We are ever reminded that any illness is a potential setback in her progress. Also, Annabelle was not vaccinated for chicken pox. This kind of illness is potentially deadly to her in her current immune-suppressed state. Please continue to pray for protection from illness - for all of us.

Annabelle has another IVIG infusion this Wednesday. Last month was the first time we were in the infusion clinic for the infusion. It went much faster than when we were in the hospital. This is because the Dr. Lo didn't think it was necessary to follow Dr. P's protocol for administering the IVIG. So, I sent an email to Dr. P asking if it is alright to go by the pharmacy's book for infusing IVIG, or do we need to do it his way. He didn't give much room to change it. So, we are caught in a little struggle between doctors. Please pray that what we suggested to Dr. Lo last week will happen on Wednesday. This infusion will be approx. 7 hours. I covet your prayers during this time. There are so many little things that can give us trouble - like problems with her port clogging up with blood during the blood draw before the infusion, or her IV line getting caught on the chair and pulling it out of her port.

Please pray:
- that Dr. Lo will follow Dr. P's protocol for giving the IVIG
- that Annabelle will not have any allergic reactions to the IVIG (antibodies from 20,000 - 60,000 different people) The last time she had a terrible headache two days later.
- for no complications with her port.
- that we might be able to get one of the two rooms.
- for protection from illness.
- that we would face each day's trials with joy. (That is hard for me!! I want to do better.)

Thanks for reading this very long post and for praying.

Annabelle turned two!

Annabelle celebrated her birthday a day late because mommy and Olivia were feeling under the weather. It didn't seem to matter to her one bit!! (that is one good thing about being 2) Grandma and Grandpa came to celebrate with us. It was fun to watch Annabelle run around and enjoy life. She is very precious to us.

She looovvveed her "Melmo" cake as she called it.

















She also loved opening her presents.


















Her dad and grandpa are putting together a tricycle that she had a lot of fun riding around the house.

Lots of Easter Pictures

It is so hard to get everyone looking at the same time - not to mention getting a real smile, eyes that are open, and dresses down! This is the best I could do.









Annabelle loved wearing an Easter hat.



















This one is for the Shook family. I thought you'd like to see the expressions on their faces when they got your goody bags. Thanks!







Grandma and Grandpa came Sat. night since we couldn't go to the family gathering on Sunday. We had a nice visit, and the girls dressed up in their Easter dresses for them and had an egg hunt.






















Alexandra fell last week and scraped her nose on the pavement. Poor thing - it is finally healing.
















I love this one simply because she is walking!!

Only a blood draw this week!

Just a quick note on this great Easter Day! We had a great time worshiping our risen Savior today - at home. It was definitely a different holiday than we have had before, but still good. I'll post some pictures soon. I wanted to just give a quick update. We are only scheduled for a blood draw tomorrow. Hopefully, this will go smoothly and we will be in and out quickly and avoid germs!! Annabelle's symptoms are 95% gone. We are still seeing a little bit hanging on. Please pray that these might leave too. If she is not in 100% remission in three months, we will have to go back to the specialist in IL. We are at 1 1/2 months right now. Thanks for keeping up with our blog.

Infusion Update

The infusion went well until the very end when I stood up and the line got caught on the chair and pulled the needle out of the port. Ugh! We were literally getting ready to put in an anti clotting drug so it would be ready for next month. Other than the mommy inflicted chaos, everything went smoothly. The clinic has two very small rooms for transplant patients who are immune compromised. There weren't any of those patients today, so we got one of the rooms. That enabled us to avoid much of the contact with other people in and out of the very small clinic (including a field trip of second graders). We were able to come home at 3:30, and Annabelle was able to nap in her own bed. We praise God for the little blessings He brings each day. Last night before bed we read Psalm 91. It came to mind today and was a comfort. I am including parts of the chapter.

( Ps. 91:1-4)He who dwells in the secret place of the Most High
Shall abide under the shadow of the Almighty
I will say of the Lord, "He is my refuge and my fortress;
My God, in Him I will trust."
Surely He shall deliver you from the snare of the fowler
And from the perilous pestilence.
He shall cover you with His feathers,
And under His wings you shall take refuge;
His truth shall be your buckler.....
(vs. 9-11) Because you have made the LORD who is my refuge,
Even the Most High, your dwelling place,
No evil shall befall you,
Nor shall any plague come near your dwelling;
For He shall give His angels charge over you,

To keep you in all your ways."

Thanks for the prayers! God is good.

Second IVIG infusion tomorrow

Tomorrow will be a new experience for us. Annabelle's infusion will take place in the infusion clinic (at the hospital) instead in the actual hospital. The clinic is only open from 8:00 to 5:00 - so this part sounds good. The bad part is that we don't have a room with a crib for her. Instead, it is one large room with recliners and curtains separating each one. I am not quite sure how this will work with an active toddler who will need a nap sometime during the afternoon. Also, I am a little concerned with the exposure she will have to others in her immuno-suppressed state. Well, these are more opportunities to practice trusting my Savior's sovereign control over her life. I wish that was easier.

Please pray:
- that her port will work properly and not cause her extra trauma.
- that she will be protected from the germs she is exposed to at the clinic.
- for me as Peter is planning to go to work after we get started with the infusion.
- for there to be no serious side effects from the blood product she is receiving.
- that insurance will cover these infusions.

Home again...

We are home. Wow- life is a bit unpredictable. Peter took Annabelle into the ER last night thinking that they would draw some blood for a culture and send them home. The first thing the resident told him was that they would be staying 48 hours and that is standard procedure for kids on chemo with a port. SOOO, Peter stayed overnight. My mom came this morning, and I went and relieved Peter this morning so he could go to work. Annabelle was released after 24 hours (a very nice surprise) because her counts were pretty good and the culture was negative so far. Her fever is down in the 99's. She was so calm all day and didn't feel like leaving the room. So it ended up being the easiest day in the hospital yet. She didn't eat anything all day except some strawberries for breakfast and a few sips of milk. So she isn't all better yet, but she is at least pleasant. The doctor said as long as her fever stays below 100.4 she doesn't need to come back. So that is what we are hoping and praying for.

A few praises to update you on:
- We haven't seen any signs of relapse yet (due to the illness).
- Our insurance paid for our visit to the specialist in IL (including the spinal tap)!!!
- Our blood pressure machine was covered by insurance also.
- The Lord is comforting our hearts through each trial.

More Fevers

You never know what a day (or night) will hold. I guess that is why Matthew 6:25 says, "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Annabelle woke up a few times in the night fussing. When she woke up at 8:15 am, I got her up and she didn't want to eat. She has a 99.4 temp. If it goes to 100.4, we will probably end up in the ER for a culture of blood from her port. Olivia is also running a 99.4 temp with a headache. This is exactly how Alexandra started out. They are both taking naps right now. Please pray for them. I am unsure how Annabelle will do with illness since she is immune-suppressed.

Update: Annabelle was admitted for IV antibiotics. Her fever is up to 101.2. I am not sure how long we will have to stay. They accessed her port and were able to draw blood to culture. They started antibiotics as a precaution. Hopefully, it is not an infection in the line. Peter is staying overnight and I'll be there all day. Thank you for your prayers. They are very appreciated and needed.

We made it through!

We are home after a long difficult day. I was able to come home and let my mom leave around
8:30 pm, and Peter stayed with Annabelle until she finished the infusion. They made it home by 11:00 pm. We had many problems with Annabelle's port, but we are very greatful that at the end of the day she got all the infusion. She is doing very well with no apparent side effects from the chemo. Alexandra is also home and healthy. Thank you for your prayers - they are needed!

Second and Final Chemo Infusion

Monday Annabelle will receive her final chemo infusion (yippee!). It is another 7-8 hour infusion if there are no complications. Alexandra's fever is finally decreasing and she will come home tomorrow if it is gone. Thankfully, Peggy Green is coming for the first half of the day, and hopefully, Alexandra is fever free by noon and my mom can come reliever her in the afternoon.

A few praises are:
- no one else has gotten sick.
- we have someone to come tomorrow to fill in.
- Annabelle continues to improve.
- we are learning what it means to "trust in the Lord with all your heart."

A few prayer requests are:
- Annabelle wouldn't have any serious reactions to the chemo or problems with her port.
- that we would all be protected from illnesses in the hospital.
- that we would "consider it all joy..." as we face various trials.

Thank you for your prayers. I can't say that enough!

We have a fever in our house. Please pray!

This afternoon Alexandra came down with a fever. My heart wants to panic, but my brain says the Lord is giving me another opportunity to TRUST Him. Please pray that Annabelle will be protected from illness. We will attempt to isolate Alexandra from her to eliminate further exposure. However, they were together all morning playing. Please pray!

Update: My mom came and got Alexandra and took her to home with her. Hopefully, no one else will catch this bug.

Update: Friday morning - I just talked to my mom and Alexandra's fever was 103 this morning. No other symptoms except for a headache. So far, no one else here is sick. Thanks for your prayers.

Update: Saturday - Alexandra's fever is still 102.8. We thought Olivia was coming down with it too because she had a little 99.4 temp. But thankfully, it is now down to normal. We are praying about what to do about the chemo infusion on Mon. My mom is scheduled to watch all the girls.

A few more pictures from February

This was the last time we were in the hospital (Feb. 24) and we caught Annabelle giving one of her bears a shot with her doctor's kit from the Dipomas - Thanks again! I took a picture of this because it was the first time that she played happily in the hospital bed. She had lost most interest in playing with toys. We were ecstatic to watch her play for 30-40 minutes alone. Praise the Lord!

During our 5 day hospital stay (Feb 11-15), Annabelle regressed so much that a visit from Grandma, Grandpa, and her sissys didn't even cheer her up much. Praise the Lord that is behind us too.





















A fussy a tired girl the day before starting treatment.









Annabelle enjoyed one last cheeseburger before going low salt :)














This is in IL waiting for her spinal tap. This too was a difficult day that the Lord brought us through and heard many prayers.




This was a stop on our way to the specialist in Illinois. This was a difficult trip (Annabelle cried about half of the way there), but the Lord got us there safely.

A week off - sort of

Just wanted to give you all an update of what is happening this week. We do not have any new treatments to start- yea! We have to get blood drawn at a nearby clinic on Monday. This will come out of her arm and not her port because only a nurse can do that. I am glad not to use her port this week because it is still bruised and she still remembers last week. Today, she was looking a purse that she picked out of the toy box after they accessed her port, and Peter asked her where she got that purse? She answered, "mama." Peter then said, "mama helped you pick that out at the hospital?" She then frowned, grunted, and held her chest where her port is. She remembered that the two were associated.

Peter is planning to meet us at the clinic on lunch so we don't have to expose the other girls to the office germs. Annabelle will wear a mask. She has gotten much better with that. Pray she might keep it on the whole time we are in there.

She is still doing well with no apparent side effects. Her blood pressure is holding steady every day and she is taking her twice daily Zantac much better. We are now giving her shots every-other-day and that is a nice change. Those will continue that way for the rest of the year - slowly decreasing the dosage. She still cries for those, but she recovers very quickly.

One more request would be for insurance approval for the Rituxamab (chemo) drug. Since it is not FDA approved for her condition, they do not pay. So we are working on that along with the doctor's office. We know that God will provide for all our needs as He already has every step of the way.

We appreciate all the kind words and actions that so many have expressed to us. We are amazed and blessed. Thank you all.

P.S. I'll post more pictures soon.

Thanks for your prayers.

"Through the LORD's mercies we are
not consumed,
Because His compassions fail not.
They are new every morning;
Great is Your faithfulness.
"The LORD is my portion," says my soul,
"Therefore I hope in Him."
The LORD is good to those who wait for Him,
to the soul who seeks Him.
It is good that one should hope and wait quietly
For the salvation of the LORD."
Lamentations 3:22-26

The day was long and started out roughly. We got to the hospital at 8:00 am, but didn't start the 8 hour infusion until 11:30. Annabelle's port wasn't functioning properly and had to be accessed (held down and poked with a needle) twice. Then, it still wasn't functioning correctly. To make a long story short, we had to add an hour to the end of the treatment to inject a declotting drug into her port. Thankfully, it worked and we were able to come home at 8:30 pm. Her body accepted the drug well and had zero side effects during the infusion. Also, she took a good nap during the process which helped break up the day immensely. (We even dozed while she did.)

While there, we ran into the mom of the guy we gave a Bible to (his name is Craig). We were able to chat with her for awhile, and she was very greatful and kind to us.

The day that started out not so good, ended up being smoother than others we've had. Thank you to those who prayed. The Lord protected Annabelle and gave us the patience we needed to get through the day's challenges. Tonight we feel full of thankful praise to Him!

Starting week 3 of treatment

This is a picture of the IGIV infusion process. Notice the short tether to the pole. This is a challenge because she wants to walk around or be held much of the time. (She is wearing the rubber gloves the nurses wear.)


We head back to the hospital in the morning for the third drug Rituximab. This is a chemo drug that specifically targets and destroys the b-cells. Normally, b-cells are less than 1% in a normal person's spinal fluid; Annabelle's are 8%. This is the marker that told the doctor that something is misfiring in her immune system. By eliminating the b-cells, the doctor hopes that the new b-cells that slowly begin to come back (in 6-9 months) will not be confused and attack her brain cells.

This drug has concerned me the most. However, the doctor in Illinois said that this is the drug that will treat the cause of her OMS. The two drugs she is on now are only treating the symptoms. So, as with every decision so far, we are learning to trust more completely the One who created our precious little girl and has allowed this condition in her life.

If the 7-8 hour infusion goes well, we will get to come home tomorrow night. Please pray for:
- her sleep - she woke up 4 times last night and 1-2 times the couple nights before.
- her body to handle the drug well.
- patience for us through the long infusion and possible side effects.
- protection from germs while in the hospital.

"Trust in the Lord with all your heart, and lean not on your own understanding. In all your ways acknowledge Him, and He will direct your path." Prov. 3:5,6

One of our best days in 7 weeks!

Annabelle seemed to not mind the low sodium hospital food:)



















Aunt Kathy having morning Bible time with the kids.



The IVIG infusions went well on Monday and Tuesday, and we came home late Tues. eve. Thanks for the meal Heather; we ate it at eight o'clock. Well, I have to say with a sense of relief and sadness that yesterday was the most normal day we have had in a long time. I say relief because we are seeing a definite improvement in her symptoms. I say sadness because I didn't realize how debilitating this OMS has been to her until I realized that yesterday was the first day that she walked off by herself and wanted to play with a doll and push her stroller. It was shocking to realize that she hadn't been playing for most of the past seven weeks. She is still fussier than usual, but she is walking by herself. She is a little unsteady, but she doesn't need her helmet or me with her every second. Her eye movements are improving, and she is more verbal than 2 weeks ago. She never quit talking like some kids with OMS do, but she is now showing an increase in vocabulary and doesn't require the coaxing to repeat words that she once did. These are all praises. Please pray for continued healing for her and wisdom for us as we care for her.

On another note... My sister Kathy left yesterday after being here for a week. It was a blessing to have her extra set of hands. I'd love to have kept her, but her husband and big boys need to eat too! Thanks for coming to help us out. My girls had a ton of fun playing with two of their cousins. Having them here was a great distraction from all that has been going on around here. Many of you have asked how the girls are doing, and over all I'd say remarkably well. The prayers surrounding us are making a difference. I'm sure there will be difficult days and moments ahead, but so far they are trying to care for and protect their little sissy. I am including some pictures of the girls with their cousins and aunt.

Finally, while walking the halls with Annabelle on Mon., one of the nurses recognized us from the week before and said that the young guy and his mother were very touched by the Bible and note we gave them. We praise the Lord for this little bit of feedback we received. Please pray for them too. Thank you.

Home for the Weekend

Annabelle is getting her IV re-taped after becoming loose.



We made it home Friday around 3:00 pm. We are so glad to be home. Annabelle was fussy all evening. She didn't want to eat, play or do much but be held. We gave her some Tylenol and after her evening shot she perked up and laughed. We were relieved to see some joy come back. She has had so many people doing things to her that she is a bit spooked I think. A couple of nurses came this morning to watch us administer the shots. She gets two shots a day through Monday and then we drop to one a day for a week and then every other day for the rest of the year. I can't wait to be done with this already, but the Lord is helping us get through each day.

Her surgery for the central line went well, and other than being in pain she is doing well. Please pray that it doesn't get infected. This port is under her skin in her chest and won't be visible except a for a little bump. Hopefully, this port will be less traumatic than getting an IV for her IVIG infusions and blood draws. The main drawback to a port is that if she gets a fever for any reason we will have to go to the ER to have a blood culture to make sure that the port is not infected. The nurse said that any illness can send bacteria in the blood which love the plastic in the port. This is how the port can get infected. Since the port is a central line running directly to the heart, if it gets infected, it has to be treated immediately.

We will go back to the hospital on Monday for two days. She will receive a blood product called IVIG. She will get these infusions monthly for the next year. These shouldn't have many side effects. The IVIG is basically a bunch of antibodies that will help neutralize her own antibodies and help stop the attack on her brain. Please pray for these to work and that the infusion will go smoothly.

One more thing - While were delayed from leaving by about 3 hours for some unknown reason, we had an opportunity to give Peter's Bible to the 20 something year old next door to us in the hospital. He is on experimental chemo because he is terminal. I was very touched when his mom told me a little about his condition. In that time I was able to write a letter to him (I don't even know his name) and share about Julie Halsey and the hope she had. I also gave him some encouraging words that Denise Harless had given me to meditate on. Please pray for him also. I do not know if he will still be there when we go back on Monday.

One more thing really - a couple of praises here-
- Our insurance approved the very expensive steroid drug Annabelle is on.
- She is sleeping well so far.

Please pray for:
- us as we head back to the hospital on Mon. and Tues. for IVIG and possible side effects.
- Annabelle's fussiness - probably a result of the steroid.
- continued wisdom in her treatment.
- opportunities to show the love of Christ with others.
- protection from germs coming in and out of the hospital
- patience for all of us as we adjust to the lifestyle changes and Annabelle's irritability.

Thanks for my gifts!

Annabelle loved the gifts (her shirt included) from her aunts, uncles, and cousins.

We have a diagnosis.......

We want to thank you all for your prayers. To say we covet your prayers right now is an understatement. It has been a huge comfort to know so many are praying. We also have seen some answers to prayers. For one, we are home from Springfield with a diagnosis of Opsoclonus Myoclonus Syndrome (OMS). This is a rare autoimmune disease (1:10,000,000) which will require a very aggressive protocol. While we were extremely sad to hear this conformation, we were also glad to be talking to a doctor who has seen and treated OMS. No one else we have seen has treated it. The prognosis is uncertain. The goal is to "reboot" the immune system and stop the attack on her brain before permanent damage is done (we hope there hasn't been any yet). The doctor told us that he believes that OMS is always a result of a neuroblatoma. Despite our negative tests for neuroblastoma, he believes that the immune system can fight them off before they are detected. The tumor cells mimic the the cells in the protein on the brain and the immune system seeks to eradicate them both; hence, her balance and eye movements are affected. They think the ear infection she had at the onset of the symptoms some how was the "spike" that started the immune system's reaction.

So tomorrow morning we head to the hospital to start the first of three drugs -ACTH. This is a hormone that causes the body to produce the steroid Cortisol. Please pray for Annabelle as this can have many side effects - weight gain, irritability, sleeplessness, and lower immunity are just a few. She will start on a high dose and gradually taper over the next year. Yes - year. This is another matter of prayer. We will have to use extreme caution to keep her from getting sick. That means that we will have to greatly limit our exposure to people. This seems like a mountain to me... actually much of what we face seems like a mountain to me. So with the love of our heavenly father, we will start climbing one step at a time. We are also probably facing a central line being placed in Annabelle's chest this week while we are in the hospital. This will be "more humane" the doctor told us than sicking her tiny veins over and over. Please pray that it will go smoothly as well. She will be under anestheisa again, which her body doesn't like. Also, it can get infected as her immune system is lowered. I will share the next steps as I can. There will be more next week.
Please pray for:
- Our girls (and Grandma and Grandpa Keller) that they will enjoy their home away from home.
- The uncertainty of Annabelle's reaction to this powerful drug.
- Wisdom for us in managing her care ( it feels like such a responsibility)
- Insurance approval of the ACTH protocol.
- God to be glorified through this trial.

This passage has been an encouragement to us:
Psalm 57:1,2
"Be merciful to me, O God, be merciful to me!
For my soul trusts in You;
And in the shadow of Your wings I will make my refuge,
Until these calamities have passed by.
I will cry out to God Most High,
To God who performs all things for me."

Here we go...

Okay, I'll start with a praise - we are headed to Springfield on Wednesday for a Thursday apt. starting at 7:45 pre testing, 9:00 Doctor. apt and 11:00 sedation and spinal tap. This is good because originally they couldn't see us until Feb.12th. They will be looking very specifically for elevated cell counts. If she has elevated counts, they will assume that some tumor is present (dispite all of our negative tests) or has been eradicated by her immune system. If they find what they are looking for, her treatment plan will be quite extensive. I will explain all of that if we have to go down that path. The place we are heading to specializes in Opsoclonus Myoclonus Syndrome. It is a rare disease that strikes healthy children. I am giving the link for those interested in learning more.
We are hopeful that, as scary as this all is, we might find an answer that will help our little girl.
http://www.omsusa.org/

Please pray for :
- our insurance to approve us tomorrow for this trip and the necessary drugs which are very expensive.
- our health - so we wouldn't expose Annabelle to anything during immune suppression.
- our minds - that we would trust our Sovereign God's plan for her life no matter what.

Thank you all for the support, encouragement, and prayers - we have been so blessed to have friends and family like you all. I will try to update my blog regularly to keep you all informed.

Some sweet moments from the last month.

Everyone decided to help Annabelle get lots of fluids before her big test Wednesday. Her arm is wrapped up b/c she had an IV.




We thank the Lord for the small windows of time to work on Olivia's Grand Prix car. It is a flower box on wheels.

































Some VERY cold fun in the snow.










These are some pictures hooked up to EEG electrodes. She is a very sweet space monster isn't she?




She enjoyed eating Kim Anderson's
special flower pot dessert! Thanks Kim.















Happy to be home from the hospital with her sissys watching Sesame Street like old times.


Trying to keep busy in the ER. Waiting for CT scan results.