Monday, February 25, 2008

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!

Sunday, February 24, 2008

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

Friday, February 22, 2008

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.

Saturday, February 16, 2008

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.

Sunday, February 10, 2008

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."

Monday, February 4, 2008

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.

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.

Friday, February 1, 2008

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.