So far so good...

We have wireless access at Hopkins, so we can update the blog as we walk through this process. This is a picture of the little room that we'll be spending so much time in! Sarah is hooked up to the IV so we really can't do much but sit and try to entertain her as much as possible.

Sarah is 3 hours into her 1st round of treatment. She is getting something called IVIG, which is typically an 8 hr infusion. There are often side effects at the time of infusion, with typical reactions ranging from spiked fevers to high blood pressure. So, they monitor her vitals every 30 minutes to make sure her body is taking the drugs. If her body continues to accept the drugs, we may be able to get out of hear in a little less than 8 hrs.

The Chemo Journey Begins

I took Sarah to her weekly clinic visit today. The big news is that her first round of chemo will start this week. Without giving you all the long details (half of which I hardly understand), this first round will consist of treatment Thursday, Friday, and Tuesday. They told me to plan on being there all day for all three days. Wow!! If you would be so kind to pray for us on those days. All day, in one spot, with an 18 month old has potential to be challenging. They said she would be given some benadryl to help on the first day. I asked if they could give a little extra to make sure she fell asleep. (just kidding...sort of) Please pray that the side effects of all the drugs will be minimal.


Thank you for your prayers. I know we've said it before, but we really do fell carried by them. There will never be a way that we will be able to thank all of you that have so graciously served us in this season. Those that have prayed, been with us at the hospital, organized meals, fixed meals, given gift cards, money for gas and parking, sent gifts, provided child care, phone calls.....thank you. I would love to write a thank you note to everyone of you. It is really hard for me to not be able to do this, but in this season, as my friends have reminded me, that is just not a reality. So this thank you will be a start. Dave and I will never tire of thanking you for all you have done for us. One more thank you to my husband. He loves his little girl so much. He and the other three kids went out the other day and bought some materials to create a safe place for Sarah to play. Now she can try to sit up, crawl, and pull herself up without the risk of getting hurt. She loves it! Even though she cannot do all these things the way she used to, she defintely loves trying. The doctor said today that this will be a great way to help her get better. Thanks babe for loving your little girl and taking the time to do this.

Keep an eye out over the next few days when Dave will be informing you of an upcoming special event. Just mark your calendars for March 31st.

Celebrating Life

We've been doing a lot of celebrating this past week. We're trying to make the most of all our time at home. The first big event was Alethea learning to ride her bike without training wheels! It only took one ten minute lesson from Dave and she got it. She is really loving riding her bike on our street and all the neighbors driveways. Hope they don't mind!


This last weekend was filled with birthday celebrations. Mikaela's birthday was yesterday and Caleb's birthday is this Wednesday. The first party was on Friday at my parents house. We had a great dinner, a Lightening McQueen cake, and a trip to the circus. It was a blast. The kids loved every minute of it!

The next party came after church on Sunday. It was the first time the kids had been to church since all this started. And boy were they excited! After church we invited two families to join us at Pizza Hut for lunch. We had such a great time being with friends.


Last night, Dave's family came over for another celebration. More food and fun! Dave's sister made these great little car cakes and the kids spent some time decorating them. I'm not sure if they ever ate the cake, or if they were full from all the decorations!

The road ahead is a bit clearer now...

Caleb loves his little "ra" so much!



A little photo shoot from last night. What you can't see is that they were all sitting on my stomach while I was laying down on the ground.




Jen and I spent the afternoon meeting with our doctors at Johns Hopkins. We are very grateful to say that the MIBG test came back as negative!!! This is really great news that we are receiving as a gift from the Lord! We are grateful! As of now, it looks like they got all the cancer out in the surgery, and that there are no remaining cancerous areas in her body! Although cancer returning will remain a low risk for years to come (which is a slight possibility for neuroblastoma), cancer is now on the back burner...

On the front burner now is her OMA syndrome. OMA stands for Opsoclonus (abnormal eye movement) -myoclonus (muscle twitching)-ataxia (abnormal motor coordination) syndrome. Of the 600 kids diagnosed annually with neuroblastoma , only 2%-4% have OMA. I say that because the treatment ahead of us is largely new in its usage because there are simply not a lot of kids that have OMA.

Sarah seems to have leveled off in her improvements, so treatment on the OMA is needed. At this point, being 4 weeks after surgery, this means that her immune system needs to be “reset” because it is still attacking her brain. The standard protocol for treatment is a mixture of chemo (cyclophosphamide) and steroids (Prednisone). The chemo would be considered a “low dose” of chemo, and the steroids would be considered a “high dose". She will orally take steroids at home daily, and we’ll go to Hopkins for chemo treatments. She will receive those injections once a month for 6 months, with one injection lasting 28 days. Both of these treatments will suppress her immune system completely, and the goal will be to “reboot” her immune system...like a computer would need to be rebooted (our doctor's illustration, not ours!!). The chemo will certainly take its toll on her body, but we are praying that the Lord will protect her from the more serious effects of chemo. If this kind of chemo doesn’t work to improve her OMA, then they will increase the dosage and/or try different kinds of chemo.

Jen and I are doing very well with this news. We are rejoicing in the fact that the cancer has not spread. We are rejoicing in the grace of God to us in the form of medicine. We are rejoicing in the incredible care that we are receiving at JHU. We are rejoicing because our God is bigger than cancer, chemo, and steroids...and he can chose any means he wants to, to heal Sarah. If he chooses to use the next 6 months to heal her, we will take that as the incredible kindness of our Lord.

metaiodobenzylguanidine scintigraphy

So, this is the official name of what Sarah is getting today. MIBG for short. I've incorrectly called it the MIGB test on previous post, but oh well. Either one is easier to say than "metaiodobenzylguanidine scintigraphy". Today, they inject the radioactive stuff into her blood stream, and tomorrow, she will be put under and scanned to see if the radioactive isotopes have latched onto any remaining cancerous cells. Obviously, our prayer is that this test comes back negative.

More Good Bad News

Psalm 54:2,4,6-7
"O God, hear my prayer; give ear to the words of my mouth...Behold, God is my helper; the Lord is the upholder of my life...I will give thanks to your name, O Lord, for it is good. For he has delivered me fom every trouble."

Today was another visit to the clinic with our pediatric oncologist. The additional good bad news is that the remaining pathology on the tumor revealed a "favorable" prognosis. Praise God!! This is good news, but the road ahead for us will remain unknown until we have the MIGB and bone scan results to determine if there are any remaining cancerous cells or spots anywhere else in her body.

We are at a point where we need to start making some decisions on how to help Sarah with the remaining ataxia symptoms. Even though her eyes are not "dancing" as much, they are not totally back to normal, and she still can't sit, crawl, or walk on her own. The doctor suggested today that we start some physical and occupational therapy before we start any type of medication for the ataxia. If her ataxic symptoms had continued to get worse after the surgery, she would have needed chemotherapy and/or steroids for treatment. However, since she has shown slight improvement, the doctors want to try the physical and occupational therapy route first. We pray that this therapy produces some positive results so that chemo won't be needed.

The next two weeks will finish out all remaining tests, and at that point we will have all the data we need to move forward with a long term plan. Things you can pray for...
- follow up with the surgeon on Wednesday
- injection for the rescheduled MIBG on Thursday, and the actual MIBG on Friday
- the following week we have a bone scan and another visit at the clinic
- pray that the remaining tests come back negative
- wisdom for us in finding the proper therapists for Sarah
- for her ataxic symptoms to go away

Jen

We call her many names...

We call her...



"Silly girly" - as you can see she is always pushing to get what she wants...in this case, she wants in the picture!



"princess" - because she's a cutey!



"Trouble Trouble" - our most common name for Sarah because of the trouble she always gets into. In this picture (one of my favorites) the cabinet door was shut and her and Caleb were playing together. She thinks its hilarious when we catch her getting into trouble!



"Precious" - because she loves to snuggle with mom and dad



We are praying that she regains the abilities that she has lost. Her Ataxia is such that she can no longer walk, crawl, or sit up on her own, as well as the "dancing eyes" syndrome. These are the things we are praying for that get restored.