Wednesday, March 26, 2008

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!!

Sunday, March 23, 2008

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.

Wednesday, March 19, 2008

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.

Tuesday, March 18, 2008

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.

Thursday, March 13, 2008

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.

Wednesday, March 12, 2008

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.

Tuesday, March 11, 2008

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!

Sunday, March 9, 2008

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!

Thursday, March 6, 2008

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.

Wednesday, March 5, 2008

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.

Sunday, March 2, 2008

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.