Annabelle is in full remission!

It is amazing to say those words... and a bit scary. I kinda feel like, "When is it coming back?" She was diagnosed in February of 08. She had her first symptoms following an ear infection in Dec. 07 at the age of 19 months. We never saw a neuroblastoma, and her Opsoclonun-Myoclonus Syndrome was called moderate to severe by Dr. P and Liz. We did the Dr. P triple therapy and successfully weaned off the ACTH about this time last year. She was on it for about 14-15 months. We have really worked hard at keeping her healthy and chose to limit almost all activity while she was on ACTH. It was quite a lifestyle change, but it was absolutely a scrifice we felt worth the cost. After she was off the ACTH, we ventured out a bit more. She made it two years without any illnesses - Praise GOD! She had her last IVIG in December and her port removed in March. So far so good.

Now that we are venturing out-and-about more (still limiting things like SundaySchool - but letting her be around some children at their homes and at our house etc), she has had a cold, minor bout of croup, and a 99.2 temp. We haven't seen any symptoms return yet. We will wait and see when the first big fever hits. It is something we will always watch and wonder about. We are so thankful to God, the doctors, and all the family, friends, and friends of friends who have prayed for us and supported us - we couldn't have done it without all of you! We are also thankful for the OMS, as scary and horrible as it was, because we learned to never, never take a normal boring day for granted. It also made us realize the preciousness of life and enjoy Annabelle all the more. God allowed this trial and provided for us at every bend and turn."God is our refuge and strength; a very present help in trouble. Therefore will not we fear."--Psalm 46:1

Hopefully, this is an encouragement to some just starting or enduring this journey with OMS and wondering if it is possible to ever get off of all meds. She is off of EVERYTHING (except vitamins and cod liver oil) and doing fabulous!!

One more thing... she has a great memory of things we have done and people we have met etc. But, when I ask her if she remembers getting shots or being in thehospital she doesn't remember any of it. I find that amazing. After getting shots every other night for 14 months she doesn't remember. We praise him for his goodness AND for the suffering that produces patience and endurance. He is faithful!

A New Baby Boy!

Hello and sorry it has been so long since I last posted. We had a great summer and enjoyed our vacations. Everyone stayed healthy except for one case of strep throat. We are very thankful for our summer.

Some big news we want to share is that we just welcomed our fifth baby home on Friday. William John Simons "Will" was born on 9/10/09 and weighed 9 lbs and was 20 in. long. Mom and baby are both doing well. Dad and sisters are thrilled and have been very helpful as mom is recovering. Here are a few pictures of our newest addition.

Praise and Prayer Request

We have been healthy and enjoying life. Annabelle is in remission, and has been off of her steroids for three months without relapsing. This is good news and hopefully means we are heading toward a permanent remission. However, she could back slide with an illness which would then go away when the illness is over. Or, she could relapse which would need further medication or treatments. OR --- our hope ---- she could breeze through without any sign of symptoms recurring. We won't know until the first illness comes.

Here is where the prayer request comes in. We just returned from vacation in UT and were around many family members. No one (of 34 people) was sick the whole week (praise God!!). However, Mary woke up this morning with a sore throat -we all are a bit sneezy and sniffly coming back to the pollen in OH. So, with no fever I didn't really get too concerned. But, tonight she started to run a low grade temp and I whisked her off to the Minute Clinic at CVS. The Lord prompts us at just the right time - we arrived 20 minutes before they closed with no wait! Anyway, she tested positive for strep throat. She has never had strep and we have been so careful to wash hands, but alas God is in control. So, I came home and put a mask on Mary and together we wiped down everything she could remember touching and spraying places she sneezed. I know God is good and will get us through each scary moment as He has so far.... it is just the unknown I don't like. If you wouldn't mind saying a little prayer of protection for the rest of us we would greatly appreciate it. We are thankful to you all.

Annabelle is Three!!!

This is Annabelle's
"pool cake" she asked for. She has great memories of going swimming last year at a neighbor's pool. So I made a pool cake. She is sooo excited to be "bigga". She is excited about having a baby brother too. Yesterday she said, "How long until I'm grown up... I want a baby in my tummy too." She is a lot of fun and keeps us laughing.

At her infusion, she got to use her new Color Wonder stamps from Aunt Steph, Uncle Dan, Em and Kaite.

Happy To Be Home - IVIG Infusion Tomorrow

We are home from Springfield and are happy that we may never have to go back again. Dr. Pranzetelli and his nurse Liz were very pleased with Annabelle's physical tests. They do all kinds of skill tests looking for levels of mastery and ability. They said that the next two months are a critical time to watch for relapses. So, we are to continue being careful and then slowly ease back into normal activities while still being careful not to go around those who are sick - easier said than done.

Annabelle's spinal test came back within acceptable limits which was also good to hear. We hope that this is gone for good, but we won't know until we pass the next two months and the first fever and illness. Soooo, we will continue to pray for the grace to handle whatever God allows in her life knowing that He will never leave us nor forsake us. Thank you to all who follow her updates and pray for us. We are comforted by your prayers.

We have her monthly infusion tomorrow at the clinic. Please pray for protection and a good day as we were sitting in the car most of the day today and will be sitting most of the day tomorrow for the infusion. She is a trooper, and I am blessed to see that most days she handles these inconveniences with a pleasant spirit. I think that I am the one who is a bit worn out from the events this week. Only one more day and then a 4 week break. Yay!

Praises to share!

We had our follow-up appointment today with the plastic surgeon and the mole was completely removed, and the pathology was good and proved it was a benign Spitz nevis.

Second, the MRI results came back clear.

Third, Annabelle is doing well since coming off her steroids. We see no changes and pray for her immune system to continue to heal completely.

NEXT:
We have rescheduled our trip to Springfield, IL. The spinal tap will be next Tuesday, April 7th.

Please pray:
-- For Annabelle not to be afraid. She is more aware now than last year and recognizes what is coming.
-- For the coming out of the general anesthesia. She did well with the MRI, but it was a different drug than what Dr. P uses. She didn't do well back in Sept.
-- Protection from illness while in the hospital and offices the whole day.
-- Safety traveling.

Happy Days!!

Friday's MRI and mole removal went well. We were scheduled for 1:00 but didn't actually start until 2:30. Annabelle hadn't eaten anything since the night before, and amazingly she never mentioned food or being hungry once! She did seem tired, quiet, and a bit nervous the whole morning. About every half hour she'd say, "Mommy, you go with me?" It was so sweet and sad because I had to tell her that I could only go so far with her and then she had to go with the doctor. When the time came, the surgeon carried her bouncing and trying to keep her from totally losing it. She did pretty well at keeping under control. She is such a trooper. Her scar on her cheek looks pretty good. I think it will heal pretty well and not be too traumatic for her down the road.

Now, we will wait for results of the MRI and mole biopsy. Hopefully, they got it all and we won't have to repeat the process!!

On another note - we finished her shots this week and said goodbye to the blood pressure machine, calcium, and Zantac that she had to take because of the steroids!!!! We are greatly relieved to be off of the ACTH and are greatful for the prayers and protection we have recieved while on it. She did not suffer the negative side effects that were possible. We know that prayer made a difference. THANK YOU!

I'll update the blog with the results of her test when I get them both.

March Madness

Well, it has been a month since my last post. No news is good news. Annabelle continues to stay well and taper off her meds. This month marks a big milestone in her treatment. We stop her ACTH shots on March 10th!!! This is a huge blessing. We are very excited to be done with steroids for awhile - maybe forever! I wanted to give a list of events this month as it is a busy one. Here are somethings that we would appreciate prayer for:

March 3 - Monthly infusion at Children's Hospital
March 10 - Last shot!!
March 13 - MRI and mole removal on her cheek. This is always hard to have her put to sleep.
March 30 - Travel to Springfield, IL to see the specialist who diagnosed her. She will have a spinal tap to check her b-cell counts (asleep again). Hopefully they are still great.

We appreciate and covet your prayers. Thank you.

"Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword?" Romans 8:32, 35

Infusion and other happenings...

We have our monthly infusion today along with an appointment with a plastic surgeon who is advising us on a mole that needs to come off Annabelle's cheek. Please pray for wisdom, safety and all to go smoothly. I'll update more on this later. Gotta run. Thanks!!

Update:
The day went smoothly. The plastic surgeon said he was willing to try to work out scheduling the mole removal with her next MRI. Now, it is just making all the details come together. They would have to transport Annabelle from the operating room to the MRI area while under general anesthesia. SO, they are checking into the details of doing that and if it is allowed. It makes me a little nervous. Please pray that if this is supposed to work out that it will. And, if not, that two separate general anesthesia experiences wouldn't be too much on her. Thanks.

Some are probably wondering, "What is this mole that has to be removed?" Well, she has a Spitz mole on her cheek that they believe is a benign melanoma. I didn't know any melanoma could be benign, but this kind is. Even though it is benign, they like them removed so that they don't ever turn into something bad. I hate that it is on her face, but at least someday make-up can help hide a scar:) I'll update more when when we have a date scheduled and I have more details. Thanks for those who continue to check and pray!

Four birthdays in two weeks!!

December was a very busy month for our family. We had four birthdays between December 22nd and Jan. 2nd not to mention two holidays. Here are a few pictures of the birthdays.

Olivia turned 11 and had a birthday pie- yum!
Alexandra had a pony cake, I had breakfast in bed, and Peter had a bunch of girls giving him cards and gifts.

Tomorrow (31st) is our last infusion for this year. Peter is taking her since I have a cold and cough. Please pray for the usual things... protection from germs in the hospital, her port to funtion properly, and a special time with daddy!

Thank you all for the prayers this past year. We feel very blessed and thankful for the year we have had to focus on Annabelle's health. It has made us appreciate every moment with her. We have also learned to appreciate each other and our friends and family more. You never know what a year will hold. We have learned to trust the Lord more, and I am learning to let the fears go.

Whatever our new year holds, His grace is sufficient for us. (2 Corinthians 12:9)

Much love and HAPPY NEW YEAR!

Monthly IVIG Infusion

We are off to our infusion today. Please pray for protection from germs and that Annabelle and I will enjoy our time "together." She did not even wimper the last time she had her port accessed. This is a huge step. She is getting used to the routine which is a blessing and makes it all easier.

Thanks you for praying and have a good day.

Where have we been????

A few different things have kept me from posting lately. First, we have a new computer with Vista that isn't very friendly (at least I have gotten comfortable using the system yet). Hence, I have not wanted to up load my pictures. Second, we have been busy with various appointments and Peter's grandad's passing away last week. Third, we have been having a smooth time with Annabelle and no sickness in our immediate family to report. That is the best reason for not posting! Life is full and we are so blessed. Here are some pictures from different events in the past month or two.

This year we dressed the girls up and delivered cookies to Grandma and Grandpa, Aunt Step and Uncle Dan, Aunt Ali and Uncle James, and Greatgrandpa and Greatgrandma Carol . It was good to get to see them for a few minutes and say "Hi" even if it was from the door.

Blogger isn't letting me upload pictures for some reason. So, I'll keep trying.

Monthly Infusion

Well, I forgot to post that Annabelle was having an infusion today. It went very well. Annabelle didn't even flinch when they accessed her port. This is a huge improvement. The infusions have gotten easier it seems. We all know what to expect, and Annabelle is used to the pokes, blood pressure readings , etc. She doesn't cry for her shots at home either. It is a relief to see her handling everything so well. God has been so gracious to us. We feel very blessed to have so many people who faithfully pray for her. Thank you all.

Enjoying the fall!

These are some photos taken at Glen Helen in Yellow Springs, Clifton Gorge, and Sharon Woods park. We had a great time.

The infusion went well.

Thank you for your prayers. We have much to be thankful for. God is so faithful to give us exactly what we need to grow and trust Him more. The day went smoothly overall. Annabelle only whimpered when they accessed her port and drew the blood. This is a big improvement from when we started in February. Also, the nurse measures and weighs her every month and she has grown 3.25 inches since March. This is great because they told us her growth would likely be stunted until she was off of ACTH (the shots she gets every other day that we are slowly tapering). We are so pleased.

A smaller praise that a only a caregiver can fully appreciate is that I am required to collect a 24 urine test from an active potty trained toddler who is used to taking herself. The praise is that I was able to do most of it while we were stuck there most of the day instead of trying to make sure I am with her at home every minute. Since she is not dry at night yet, we have to use an adhesive bag - very difficult. Please pray it stays on all night so we can be done in the morning.

The day was not any shorter because the volume of IVIG was the same even though the concentration was slightly less. So we were done at the usual 4:30. My mom had my girls and usually brings them home, but she came down with the stomach flu today while she had them. So I drove out to pick them up, and left Annabelle in the car away from illness. Please pray that she heals quickly and that no one else gets it.

Monthly Infusion

I'm wearing my mask trying to be safe coming in and out of the hospital.



Keeping busy with some fun play dough.

Snoozing on my mommy.

Annabelle has her monthly IVIG infusion tomorrow. She also has a few blood tests for her thyroid to make sure it is functioning properly. Dr. Pranzetelli said some of her lab work from our trip to IL showed some abnormal levels and we need more testing.

We are excited that she will get slightly less IVIG because the Dr. P decreased the dose due to the fact that she gets headaches afterward. So, this might mean a shorter day there.

Please pray for us tomorrow for:

- Annabelle as she is increasingly aware of what is happening and doesn't like it. She handles it pretty well, but the blood draws are a bit scary for her.

- Protection from germs.

- Strength for whatever comes our way.