All is Well

Thank you for your prayers.They are definitely being answered. Sarah continues to do well. We haven't seen any negative side effects from the chemo or any of the other drugs yet. Her appetite does seem to be increasing a bit, which is to be expected. We are enjoying some time off from the hospital with our next visit not scheduled until next Friday.

Caleb has been enjoying lots of playtime with his buddy "Ra- Ra" I love watching them together. It brings so much joy to my heart to see how much they love each other already.

The girls have been enjoying going to the play put on by the youth at our church. They went to the dress rehearsal last week, and are at the show tonight, seeing for the third time already. They plan to go next weekend too! They really love it!!! They also started a dance class this morning. My parents graciously gave this gift to Mikaela for her birthday, and are also providing babysitting or taking them to class. It's so good for them to be able to do fun stuff during this time.


We would love to see many of you at the fundraiser in honor of Sarah on Monday. Here is a look at the flier that Dave's brother and his wife put together. If you need more details, check back a few posts and you can see more there. Hope you can make it!

So far...

so good. Sarah did great again today. She didn't fall asleep until the very end, but for the most part the day went well. We came home with some Zofran to try to help keep any nausea at bay. Up to this point, she seems to be tolerating everything pretty well. We got a new kind of steroid tonight to try. She was not having any part of the other one. We have so many different kinds of medicines already, we're calling it a pharmacy!!

Anything for our little girlie.....

Another Day

Lamentations 3:21-25
"But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases, his mercies never come to an end; they are new every morning; great is your faithfulness. "The Lord is my portion," says my soul, "therefore I will hope in him. The Lord is good to those who wait for him."

Today starts another day. This day we start chemo. It will be another long day because in order to protect Sarah's body she has to be well hydrated. So, they will check her when we get there and won't start the injection until she is sufficiently hydrated. Once she is hydrated, the actual injection is only 1 hour, but they need to hydrate her afterwards as well for 4 HOURS!!

If you would once again pray that the side affects would be minimal. After the treatment on Friday she spent much of the evening throwing up. She was such a trooper. Also, would you pray for us as we are trying to give her three other medicines twice a day. They all taste pretty bad and she is putting up quite a fight. Can't say that I blame her. Thank you once again for praying for us.

Green Turtle fundraiser

My brother and his wife, work at the Greene Turtle Sports Bar and Grille in Columbia, MD. On their own initiative, they had the idea of putting together a fundraiser for our family and for Neuroblastoma research at the restaurant! It is going to be a fun time!

There will be a number of different things going that day. First, throughout the day, there will be a raffle going on. There are a number of really cools things that will be raffled off. You simply buy some raffle tickets (as many as you want) and stick them in the jar to possibly win the prize! The more tickets you put in, the greater your chances of winning! The prizes range: gift certificates, DC/Balt area sports team tickets, Terps gear, weekend getaways, Restaurant gift certificates, vacation packages, golf for a foursome at a local golf course, etc. If anyone would like to donate a prize to be raffled off, please let us know!

In addition to the money raised during the raffle, the owners of the Greene Turtle will VERY generously donate 10% of all the food and drink purchases to the overall pot of money collected! So, just coming in, hanging out, and having lunch or dinner as a family will support the cause! In addition, we'll be selling Neuroblastoma bracelets to raise awareness and money for research.



Our whole family will be there for as much of the day as possible. We are hoping to have Sarah there as well, depending on how she is doing with her chemo. Bring the whole fam and come hang out with us! So, mark your calendar for March 31st and join us at the Greene Turtle in Columbia, MD!

Strength

Deuteronomy 33
....and as your days, so shall your strength be....the eternal God is your dwelling place, and underneath are the everlasting arms.

As I prepare for another long day, this time by myself, I am trusting in the strength that I know God will provide. So grateful that Dave was able to go with me yesterday. It's so nice to have him with me for the "firsts".

Just wanted to clarify a the treatment schedule for everyone. We're new at this, so I feel like we are stumbling our way through this. The drug that Sarah got yesterday and will get again today, is called IVIG. It is not chemo. I can't tell exactly what it does without looking it up, but what I do know is that half of the drugs she is getting are used to help counteract all the bad stuff from other drugs, or from bad stuff her body is doing to itself. After today, we have the weekend off, because our doctor knew that trying to get to church on Sunday was important to us. Monday, we start steroids, and a few other drugs from home. Those will be everyday. Tuesday we will start chemo, and Friday, and for the next three Fridays after that, we will give her a drug call Rituximab, all which have to be done from the clinic. So we went from the once a month idea I had in my mind to a very full schedule. All the days at the clinic are basically 8 hour days. So, if you would pray for Sarah and I at the clinic we would be grateful. Also, would you pray for the other kids and the wonderful people that have so graciously offered to watch them for entire days. It is humbling that someone would take in another three kids for an entire day. We are grateful.

Round 1 is over

Seven hours later...this is the result! Thanks for all your prayers for us today, God has answered them! Sarah's body accepted the treatment perfectly, with no adverse side affects! Round 1 is over. Round 2 begins again tomorrow morning. God is good!

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.