No MIGB test for today

The test originally scheduled for today and tomorrow has been postponed. Apparently, the radio-active stuff they need for the test wasn't able to be delivered last night because of the storm. Its kind of funny to us how the world shuts down due to a dusting of snow. Oh well...we'll take the next two days off from testing and receive that as a gift from God.

The best bad news we could have received

We had our appointment today with our oncologist to discuss the results of the tests done, as well as the pathology on the tumor removed from her back. We were immediately told that the bone marrow test came back negative, meaning that the cancer has not spread to the bone marrow. Praise God! Also, the initial pathology came back on the tumor and it is a kind of tumor called a Ganglioneuroblastoma, which is an intermediate tumor arising from nerve tissue. As our oncologist described, a ganglioneuroblastoma may be localized to one area or it may be widespread, but it is usually less aggressive than a neuroblastoma. It is most likely this tumor is mature and non-aggressive, as opposed to the immature, aggressive tumor that looks to duplicate itself. This was the best kind of bad news we could have received! Of all the kinds of tumors it could be, it looks like this one isn't the "mean kind" (as our doctor calls it).

Tomorrow is the first day of the MIGB scan. Sarah will be injected with radioactive isotopes tomorrow, and then have the scan on Friday that tracks them throughout her body to definitively determine if there are any other cancerous areas, or any cancerous cells left over from where the tumor was originally. She then has a bone scan next week.

Treatment for the Ataxia will most likely involve chemo and steroids. Our prayer is that this will not be needed. Over the next 3 weeks, the doctors will be looking to see if her body is responding in a good way to the tumor being gone. Her body getting better on her own won’t happen for a couple weeks, so we are in the waiting pattern now, praying she gets better on her own. If she does show signs of getting better on her own, then we may possibly avoid chemo. This is our hope.

Thanks again, for your prayers. We need them everyday, and we feel them everyday. We are grateful.

How are we doing?

People have been so kind to ask how we are doing. It can be a difficult question to answer at times. I’m not sure I will be able to communicate effectively how we feel, but I’m going to try. Phillipians 4:6-7 says, “…do not be anxious about anything, but in everything, through prayer and supplication let your requests be known to God, and the peace that surpasses all understanding will guard your hearts and your minds in Christ Jesus.”
First, let me say that we are so grateful for all your prayers. We keep saying we feel “carried” by them. It is a hard to adequately explain in words, but there are so many times that we say to each other, as we are being inundated with constant information, that we are so glad people are praying because we feel like we are spending so much time in meetings that we are glad others are praying when we are unable to. Prayer is the greatest thing you could do for us! And let me say, your prayers are being answered.
Second, the verse says that the peace that surpasses all understanding will guard your hearts and minds. There have been a few times that people have asked, are you guys really doing okay? I guess surprised that with the magnitude of what we are facing that we could possibly be doing okay. While there is still much grief and sadness, we are experiencing so much peace. A peace that really I cannot understand, other than it must be from God, because left to myself this would not be how I would be feeling. I also feel like the Lord has guarded our hearts and minds in the way that we have been able to process all this information in light of the cross. Even with all the information and news we receive, our hope is not in what all the doctors have to say, but rather our hope is in what Christ has already done, on the cross. He sent his son to die for our sins. So when I think in this way, I realize that Christ has already taken care of Sarah’s greatest need. Our greatest need isn't for health, or a good diagnosis, or for the meds to work (all those are great blessings from God), our GREATEST need is for a Savior. God took care of that greatest need by crushing his son in our place, and giving to us His righteousness. If he did this, won't he also give us the grace to walk through trials?
So, how are we doing? We are clinging to the truth of God's word, we are freshly grateful for the cross, and we are grateful for the all those who are carrying this burden with us.

Jen

We are home!

Sarah spent one night on the Oncology pediatric floor and was sent home. As soon as her lung x-ray came back clear, and the pain was under control with an oral medication, they said she was clear to be going home! Praise God! We are grateful to be home. The older three kiddos are still staying and "Ma and Pa's house" (Jen's parents...who have been great in taking care of the older kids), so that we can spend the night with just Sarah. As I type, Sarah is laying down on her mom in our bed. Being home is great medicine.

As we have said many, many times...thank you for your prayers! We feel them in very real ways as we fight for faith in our great Savior. As you pray, please lift up the little girl who was in the room next to us. Her name is MacKenzie. She was the sweet heart who made the crafts and pictures for our little Sarah. (see the pix) This was her second go around with a brain tumor. Her parents were a great support for us, and Jen and I have been praying for MacKenzie.




We will be back in out-patient pediatric oncology on Tuesday, Wednesday, Thursday and Friday. But for now, we are receiving being at home as a gift from God!
You can pray in the following ways for Sarah:
- The her Ataxic symptoms would dissipate. Although the doctors say this is unlikely, this is still our prayer. Sarah is still unable to walk, crawl, and even sit up on her own. Please pray that these abilities return.
- She would sleep and eat well, and regain strength before doing more tests next week.
- For McKenzie's healing

Recovery

Here's a more peaceful picture of Sarah. As you can see in the picture, she is sleeping with a piece of her big brother's "blue sheet", which he gave to her before surgery. Caleb's "blue sheet" is his highly coveted comfort blanket, except it's a sheet. Go figure.

He wanted to give it to Sarah to take with her, but he humorously didn't want to part ways with it either. So, Jen got out a pair of scissors to cut off a little piece for her to take with her, and Caleb covered his eyes and started dancing his feet and said, "oh, oh, oh, oh, oh...I can't watch!" We thought that was pretty funny.

Today we moved to the Pediatric Oncology floor. It is pretty sobering walking around to see so many families going through similar trials, most of them much worse than ours. Our hearts break as we see so much suffering. Being on this floor has its benefits though. For starters, we have our own private room, with a private bathroom. Since most of the kids on this floor stay for weeks and months, the hospital and staff go out of their way to make the whole family welcome. They have a family lounge, TV room, play room, bathroom, showers...they even have a washing machine and dryer for families to use whenever they want. On top of these amenities, we are also receiving great care. All we are receiving here at Hopkins has caused much gratitude to God in our hearts.

Scripture teaches us that all of creation is upheld by the power of Christ. God is intimately and directly involved in his creation. While there are many things in life we don't fully understand, what I do know is that we can trust God. We trust not only in his Sovereign power to control the universe, but we trust in his goodness and in his promise to work every situation in our lives to his own glory and for our good.

Surgery went well!

We arrived at the hospital early this morning (5:45 am) to prep for the surgery. We met with the Anesthesiologist and the surgeon in the pre-op room...and at about 8:00am, Jen walked her back to have her sedated.

After 5 hours of surgery, the surgeon came out to let us know that the surgery went "very well". We were all very relieved to hear that the "tumor came out just fine" and that none of the tumor was left over. In addition to taking out the tumor, they put in a chest port (a semi-permanant IV) and a chest tube (to drain any fluid from the deflated lung). They also did the spinal tap and drew bone marrow. Needless to say, girly will be VERY uncomfortable for a few days...in the words of the doctor, "she will be a very unhappy little puppy for the next 24 hours".

Sarah will be in the PICU until the chest tube is clear and her left lung is operational (should be sometime today). They will pull the chest tube and keep her for a couple days.

We are excited that we have now begun the road to recovery. Please pray that
- her little body recovers
- the bone marrow test comes back negative
- there is instant change in her symptoms

I will try to keep everyone updated on her progress. Thank you all for praying for our family!

Another answer to prayer

We were told the surgery to remove the tumor would most likely happen on Friday afternoon or Tuesday morning. They weren't hopeful for a time slot on Friday afternoon, because they didn't have enough time booked in the OR to complete the surgery. So, we were prepared to wait til Tuesday.

Last night our care group came over to our house, brought us dinner, we watched a basketball game and just sat and talked. It was a wonderful time of fellowship. We are grateful for each of these couples. Before they left, Brian, our care group leader, led in a time of prayer. In that prayer, he prayed something like the following, "Lord, even though we don't know all there is to know, we pray that you will expedite this surgery."

While I was out this morning with Alethea and Mikaela on a Valentine's day breakfast, Jen called me and said the Hopkins Operating Room called to say that Sarah got on the schedule for Friday (which alone was great news). But there was more. She informed Jen that they were able to secure the time slot first thing in the morning tomorrow at 7:30am. This blew us away. We received this great news as a gift from God.

The surgery is now scheduled for tomorrow morning at 7:30am. It will take about 5 hours in all, as they will insert a chest tube, a port in her chest, take bone marrow, do a spinal tap, and remove the tumor. It is an extensive surgery, as the tumor is right about the heart and right next to the spine. They will deflate her left lung, go through her ribs to get the the tumor out. Needless to say, the girl will be in some pain after surgery. We will most likely be in the hospital through the weekend in Peds post op or PICU, and then onto recovery. Please pray for God's mercy and grace on the surgeons tomorrow.

Ephesians 3:20-21
"Now to him who is able to do FAR MORE abundantly than all that we ask or think, according to the power at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen"

Dave