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.

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

Feb 13th, 2008

We just returned from Hopkins. Today was a good day. We received good news from our doctors (as much as "good cancer news" can be). As far as they can tell, the tumor next to the spine is not intertwined with the spine itself! This is very good news. As we sat in the doctors office this morning, looking at MRI images, he showed us a picture that shows the 2 cm tumor. Next to the tumor was a slim, narrow black line, which he believes to be a "separation" between the spine and the tumor!
The other great news was that there were no other tumors visable on any of the other MRIs. The presence of other tumors will be officially ruled out next week after a MIGB scan (next Thurs/Fri), but for now, they are working with this being the only tumor! This is also very good news.

We are still waiting on an official surgery date...could be Friday or next Tuesday. Thank you for your prayers for us and for Sarah!

We spent Tuesday afternoon in pediatric post op after Sarah had her MRI. It took her a while to wake up from the heavy drugs they gave her...so she slept on her mommy for a few hours. She got sick a couple times from the anesthesia, but all in all, the procedure went well. She was in the MRI area for 3 hrs, while they did multiple MRIs checking for the existence of any other tumors.

We will be meeting with the Pediatric surgeon this morning at 9am to discuss the results of the MRI. We are praying for a good report!

Monday, February 11th

Jen, Sarah and I went to Hopkins today to meet with our Oncology Pediatric Doctor. We were once again grateful for the team of men and women there. Our doctor sat and talked with us for over 2 hrs, answering all our questions...of which we had plenty of them!

We talked with him and he gave us what the week will look like:
Today was just blood work
Tomorrow - Sarah will have an zoomed in MRI on the tumor so the surgeon will know if the tumor is intertwined with the spinal cord. He will use this MRI to figure out his course of attack during surgery.
Wednesday - We will meet with our Pediatric surgeon to review the results of the MRI, and to map out the plan for the surgery.
Friday - Surgery...hopefully. I say hopefully because if the tumor has intertwined itself with her spine, then a pediatric neurosurgeon will need to be brought in to participate in the surgery. Hence, the surgery will be much longer of a surgery. If this is the case, the surgery might not happen til early next week, because they need to line up the surgery room and the doctor's schedules. During surgery, they will perform a spinal tap, and draw bone marrow to determine if the cancer has spread to the bone marrow (which can happen with this type of cancer).

In all this craziness, we are comforted. As Charles Spurgeon says, "In losses, crosses, and troubles, you realize God's presence more conspicuously than ever. The Bible does not say that when you walk along the flowery path or rest on the soft green bank, "I will be with you." It does not say that when you walk on the close cut grass, which feels like carpet under your feet, "I will be with you." I do not remember reading a Scripture promise like that. But God does say, "When you pass through the waters I will be with you" Is 43:2 He gives a special promise for a special time of trial. To meet the doubts of His troubled child, He says, "Fear not, for I have redeemed you; I have called you by your name; you are Mine."

Dave

Friends

We are being blown away by the support and love we are receiving on a daily basis by friends near and far. Our family is caring for us well, and our friends are caring for us well. I am very privileged to work at a place where all my best friends are. These men (and their wives for Jen) are our closest friends. They care not only for our physical needs, but our spiritual needs as well. They are caring for our souls during this difficult time.

The senior pastor of our church, Joshua Harris, and one of my best friends, recently sent Jen and I an email that encouraged our souls. A portion of the emails reads as follows:

I just wanted to remind you that God loves you and your girl with an everlasting love--and these circumstances don't change that. Even though we don't have answers the cross shows us God's heart for us and his purpose and power to redeem all suffering.

I wanted to pass on two questions from the Heidelberg Catechism that encouraged me recently. I hope they encourage your soul...

27. Q. What do you understand by the providence of God?

A. God's providence is His almighty and ever present power,[1] whereby, as with His hand, He still upholds heaven and earth and all creatures,[2] and so governs them that leaf and blade, rain and drought, fruitful and barren years, food and drink, health and sickness, riches and poverty,[3] indeed, all things, come not by chance[4] but by His fatherly hand.[5]

[1] Jer. 23:23, 24; Acts 17:24-28. [2] Heb. 1:3. [3] Jer. 5:24; Acts 14:15-17; John 9:3; Prov. 22:2. [4] Prov. 16:33. [5] Matt. 10:29.

28. Q. What does it benefit us to know that God has created all things and still upholds them by His providence?

A. We can be patient in adversity,[1] thankful in prosperity,[2] and with a view to the future we can have a firm confidence in our faithful God and Father that no creature shall separate us from His love;[3] for all creatures are so completely in His hand that without His will they cannot so much as move.[4]

[1] Job. 1:21, 22; Ps. 39:10; James 1:3. [2] Deut. 8:10; I Thess. 5:18. [3] Ps. 55:22; Rom. 5:3-5; 8:38, 39. [4] Job 1:12; 2:6; Prov. 21:1; Acts 17:24-28.

Our great God is governing every cell in this universe. Be patient in this adversity, brother. Be strong in the Lord. He will sustain you day by day. And we’re going to walk this road with you. You’re not alone.

The truth of who God is and how he relates to this created world are sustaining us everyday. We are headed to Hopkins in a few hours to begin preparatory treatment for surgery. We should learn more today about what this week will look.

Dave

Sarah Faith

We wanted to keep as many of you up to date as we can, and will continue to do so through the blog as we are able. Here is an email that Dave sent out last night.

Some of this news you may already know, and some you may just be hearing of. Jen, Sarah and I just returned from Pediatric Oncology at Johns Hopkins in Baltimore. We were referred there immediately after an MRI at Shady Grove Adventist hospital revealed 2 tumors in Sarah. We went to SG earlier this week because Sarah was showing symptoms of digression in her motor skills, like walking and balance. We went right from SGAH to JHU. The doctors at JHU are some of the finest in the world. And despite being in high demand, we sat at length this evening with three doctors who specialize in pediatric oncology and they showed absolutely no sense of hurry, making us feel like we were the only cancer patients in the whole place. We left very grateful to God for the gift of medicine and very grateful for the oncology department at JHU.

It is most likely that our little girl has cancer, a form known as neuroblastoma. This is cancer of the peripheral nervous system. One of the tumors is right next to her spinal cord, which is why she is experiencing the odd side affects she has been experiencing. From the MRI readings they received from SGH, they were not able to detect the second tumor near the liver and at this time are limiting it to the one tumor near the spinal cord. They will do further MRIs to confirm this.

We will be home for the weekend for some much needed family time, and on Monday at 1pm, we will return to Hopkins to begin days of more testing: blood, urine, bone marrow, bone scan, another MRI and CT scans, all designed to learn more about the tumor before surgery can occur. The doctors are trying to get the surgery done by the end of next week. After surgery, we will begin treatment of some sort. The type and length of the treatment will be determined by what they find during surgery.

At this point, we have been told by our doctors to be preparing ourselves for the likelihood of a treatment and recovery process that will take no less than six months.

Please pray that the tumor is not intertwined with the spinal cord. If it is, we will have to have a neurosurgeon do the surgery with oncology surgeons. And please pray for a full healing from her all cancer and ataxia.

Jen and I are so grateful for your friendship and ongoing prayers. We have been carried along by them. We are also being very well cared for by our care group and family, from visits in the hospital to simply being there with us in the down times. We are grieving a lot, but we are aware of God’s grace. He loves our little girl more than we do, and we trust him.

Sarah

We've had quite a week. On Sunday we noticed that Sarah was having trouble walking and falling down quite a bit. On Monday we took her to our pediatrician, and he called a neurologist who wanted to see us right away, who then after seeing him, sent us right away to the hospital. On Tuesday morning she had an MRI and a spinal tap, and had tons of blood and urine work done. We are grateful that after all that, the result is nothing terrible. She actually has some sort of virus which is affecting the cerebellum, which is the part of the brain that controls balance and coordination, which would be why she has lots of shaking and is unable to walk normally. It is amazing to watch just a fraction of how the brain works. Other than the way this is affecting her physically, she is otherwise unaffected. She is her normal fiesty self, and was amazing during her time in the hospital. We were well cared for in the hospital by some friends and once again our family helped out heroically with the other kids, which allowed Dave to stay with me the entire time in the hospital. More importantly our friends cared for our souls as well. Helping us to see God's grace even in the most difficult circumstances. We are trusting in the Lord with the continual unknowns, what kind of virus is this, how long will it last, have the physical symptoms peaked at their worst yet? We are doing well and grateful that it is nothing worse. Thanks for all of you who have prayed for us, and expressed your care for us. We are grateful to not have to do this alone.