Back Home!

Just a quick update - Christen and Debbie arrived home Sunday evening at around 9:00 PM. We are all so glad to be back together and are thankful for all the support and encouragement we have received through you.

Please pray that Christen will be able to get through the nausea and low blood counts without getting another line infection.

Steve & Debbie for the family

Home Sunday?

We are hopeful that Christen will be able to come home from CHOP Sunday afternoon. I am driving up in the morning to pick them up. Please pray that all goes well at the hospital and that we will all be re-united tomorrow evening. It will have been two weeks since we have been together as a family. All the other kids and I have been home since Friday evening, but though we enjoy being together it is of course not the same with 2 family members still away.

It has been amazing to see how Jesus continues to be at work for our good, even though it has been very difficult. It does provide an amazing sense of peace to know that our Savior has us all in His loving Hands, and He will do whatever is best for us. Thank you so much for the encouragements and the many ways that you each have been a blessing to us.

Steve & Debbie for the family

First Chemo in Philadelphia

The last few days were spent getting ready for chemo---various tests, hearing, heart, kidneys, etc.; and getting moved down to the oncology floor all the while still being seen by the orthopedic doctors and physical therapists. Christen was settled into her new room last night; and after being given preliminary anti-nausea drugs today, slept most of the afternoon and evening. We finally started chemo around 6pm. I hope she will be able to sleep through the nausea though she did just have to ask for a dose of medicine to help with it (10:30pm). Maybe we could leave here Sunday afternoon???????

Thank you for all of your encouraging comments. Yes, it's wonderful to have a Savior, to know God and to be able to rest in His plans whatever they may be. We do hope and pray that Christen will live a long and full life for God's glory; and yet really, none of us know that we will be alive tomorrow.
To not have to fear death is a wonderful thing. To be able to know that God, in His great love, died to take our punishment; so that we could be set free, ALL of our sins erased--past, present, and future--able to enter heaven. I don't deserve such goodness!!!!

Well, I really must go and catch some sleep--not always easy to do.

Love to all of you,
Debbie

Tuesday Evening

Christen received her Continuous Passive Motion machine yesterday and is doing very well using it. She remains pleasant, going with the flow of things (which are almost always uncertain). We are blessed to meet many wonderful care givers and staff here while also missing our UVA group. I won't even get into how much we miss being at home with our immediate family and all of you!!!!!!! However, we rest in knowing that this is God's plan for now.

We still do not have the complete results back yet. The preliminary results are that 1/3 of the tumor cells have died. (No word yet on the possible skip lesion.) This puts Christen into the poor response group which has a 60% event-free survival rate. Only one-fourth to one-third of osteosarcoma patients do get a good response as the cancer is very aggressive. We all would have wanted to have heard of much better results, but we know that our true hope is in the Lord who made heaven and earth. His ways and plans are better than our own. He is working out His purposes for our good. We are all learning more about placing our joy in Him, and being more grateful for each blessing and gift He has given. Christen and I will be staying here in Philadelphia for her next chemo treatment which most likely will start tomorrow. This seemed to be the best choice with the least amount of upheaval, since we are still here. This is the really tough chemo which knocks her counts down to around 0. Pray that she'll be able to handle it well and that good healing will take place. Her surgery site looks beautiful---not to mention her smile :-).

Many thanks for your love and prayers.

Trusting in God's goodness,
Steve & Debbie

Monday Update

Christen is thankfully still sleeping soundly this morning. She is improving steadily, and the fact that she is able to sleep so well indicates that her pain is under control. She should receive the CPM (Continuous Passive Motion) machine today to move her knee back and forth so that she will have good range of motion in her knee when fully recovered. You can read here about it. http://en.wikipedia.org/wiki/Continuous_passive_motion

Thanks for the continued prayers and encouragement. Hopefully we will find out more today about when we will get to go home.

Also, to answer a couple of questions that have arisen from recent posts, yes, she did eat the donut :-), and yes she was a little nauseous but not too bad (the Monday April 14th post) , and yes they did remove the suspected skip lesion. They have removed all known tumor from her body. We should find out if was indeed a skip lesion when we get the pathology report this week.

Steve & Debbie

Sunday Afternoon

Christen continues to improve with each day. She was able to get a very good night of rest. The Physical Therapy person came by this morning and helped Christen take a nice walk on her crutches around the hall. She is resting comfortably in her bed now doing facebook and such. She will have an ultra-sound on her leg today to make sure she doesn't have any clotting issues.

Louie, Hannah, Shaye, Jacob, and Abigail all came up to visit Christen yesterday afternoon. It was very nice to see Christen enjoying the fellowship.

Steve & Debbie for the family

Saturday AM Report

Christen continues to steadily improve. She had a reasonable nights sleep though not as good as the previous night. We are hoping to be able to come home on Monday, though we shall see. We have learned not to get our hopes up too much about a particular day. She still has few hurdles to cross before departure, but we are pleased with the progress she is making.

We have one particularly important prayer request to add to the rest: it is very important that her knee surgery area not get an infection because that could necessitate an amputation. The orthopedic team has been extremely careful to make sure that doesn't happen so we ask that you pray for that specifically and earnestly.

Thanks for your prayers and for letting us know that you are thinking about us. Your concern means so much to us.

Steve & Debbie

The Friday AM Report

Christen had a much better night. Her color is better this morning, and she is sitting up in bed acting like her usual, smiling, cheerful self. They made some changes to her pain management last night that seemed to work very well. Thank you for the prayers. It is not an easy job to make someone who has had such a large surgery feel comfortable, so we are very thankful for all the efforts that the folks here are putting into it.

We don't have a good idea yet of when Christen might be released, and where and when the chemo treatment next week will be administered. Please pray for wisdom about all that.

Steve & Debbie

Thursday PM

Another quick update: Christen has been struggling with pain all day. The staff here have settled on a plan of action which we hope will bring it down this evening and help her to sleep tonight. Please pray earnestly that will be so.

Thanks!
Steve & Debbie

Thursday AM after Surgery

Christen had another fairly difficult night. She really didn't fully get to sleep until around 4:45 AM and then they came in at 8 AM to give her more medications. She is very tired but the pain is still strong enough to keep her awake a lot of the time. They are giving her very strong medications already so that is an indication of the kind of pain she is having. We are very proud of her, though, because she really doesn't complain too much about it. She is sleeping now, and we hope she will be able to a lot this afternoon. She has only slept about 7 hours in the last 50 hours or so.

We have considered the possibility of doing Christen's next chemo treatment (cisplatin) while here if that would work better for Christen. It is due the week after surgery. Please pray that we will have wisdom about that.

On another note, we had the joy of seeing a previous very special nurse from our first time here in January, Vanessa, the first night we arrived in Christen's room. She was our nurse here last time.

The picture is of Christen and Debbie with the balloons she received from our brothers and sisters at GPC. Thanks, they brightened her day.

Steve & Debbie

Quick Update

Christen is feeling better this evening so we think she should be able to sleep. Please pray that will be so.

Thanks!
Steve & Debbie

Pain Control

Christen is still working on pain management. It is not terrible, but is still high enough that she is not really able to sleep for any extended period of time. She really needs to be able to sleep so please pray that she will get some this afternoon, evening, and tonight.

Thanks to everyone for the notes, cards, gifts, etc. On that note, since Christen's blood counts are sometimes low, the hospital has indicated that she is not allowed to have fresh flowers or greenery since they can carry bacteria which is problematic for oncology patients.

Thanks!
Steve & Debbie

Day After Surgery

Pain has been more of an issue since our last post. The "Pain Team" has been working this morning to help her manage it better. She also had a fever last night, which caused us some concern, but it has diminished this morning. It is a common occurrence after surgery but with all our recent travails it was a worrisome event. Christen has only been able to sleep 3 hours (other than surgery) since her arrival here yesterday morning, so pray that she will able to get some sleep today. She is very tired.

Thanks again for all the expressions of love, concern, and the prayer. It is a wonderful support to know that there are so many people praying and thinking about Christen.

Steve & Debbie

Prayers Answered

We have been amazed at how well Christen has done today. Jesus has answered your prayers. Her pain is well under control, and they are willing to do more if needed. She is feeling some pain now, but it is nothing compared to what she has experienced in the past. She is feeling very well, considering what she has been through today, talking, joking, and has started taking fluids this evening. We're sure, however, she will feel very tired tomorrow. She came to her room around 6:15 PM.

We are so thankful to God for how He has answered prayers. There must have been a lot of people praying given how well things have been today! The situation could be so much worse. "Relief" or "thankful" doesn't even begin to describe how we feel.

Feeling Very Blessed,
Steve & Debbie

In Recovery

Just a quick update. Christen went into recovery at 2:35 PM, and Debbie and I got to go into the recovery room with her at 4:05 PM. She is doing quite well. She is awake, talking, smiling, and generally making her parents quite happy to see her. :-) Praise God for His mercy. They are working very hard to manage her pain but it is quite high. They will hook her up to a pain pump soon. They are currently preparing to give her a blood transfusion since she lost quite a bit during surgery (not unexpected). She should be able to get out of the recovery area and up to her room within an hour or so.

Thanks again for all your prayers! God has been so merciful to her and us!

Steve & Debbie

Knee Surgery Complete

Dr. Dormans came by at 1:15 PM to report that the knee surgery is complete and everything went very well. We give praise to God that nothing unexpected came up and the Dr. feels that he was able to remove all of the tumor, and the endoprosthesis fit very well. It will take about a week to get the pathologist report back indicating how much of the tumor was killed by the chemo, and certainty that all of it was removed with clean margins of good tissue around the tumor site. We will also find out about the possible skip lesion then.

Dr. Dormans expects her to be up with crutches in a few days, and walking without them in 6 weeks. She will be very excited to hear that! She has been very anxious to be able to walk without crutches for a while now.

Thanks to God for answering prayers! May He be glorified.

Steve & Debbie

In Surgery

They wheeled Christen back to the Operating Room at 7:55 AM. The surgery will take at least 5 hours, and probably a little longer since they plan to put the broviac central line back in.

After today, the next big event will be getting the results of the tumor response to the chemo. We should have this within the next 2 weeks. Please pray that the spot on the bone above the main tumor site will not be a skip lesion. This is the spot that showed up on the first MRI which they thought it was an "artifact", but it also showed up on the 2nd MRI here at CHOP, so an "artifact" explanation is unlikely. If it is a skip lesion, that would indicate a poorer prognosis. We know God is in control, and loves Christen with an everlasting love from before the foundation of the world.

She is having a very painful procedure today. Pray that they will be able to manage her pain well. They decided to give her two special catheter's in her leg/torso area to deliver medication to block the nerve pathways in her leg.

Steve & Debbie

"I'm going to eat a donut"

When she woke up from a nap this afternoon Christen said the following, "I'm either really nauseous or really hungry, so I'm going to eat a donut to find out." :-) Christen is sometimes really discouraged, but also still has her funny sense of humor as indicated by the quote above.

We have to be at the hospital at 6 AM Tuesday morning, and she will be in surgery by 7:20 AM. She should be out of surgery by 1:30 PM or so. Please pray specifically for Dr. Dormans and the rest of the medical staff for wisdom and skill, and for Christen for good recovery. Pray also for a restful night tonight, especially since we have to be up very early in the morning.

Steve & Debbie for the family

In Philadelphia

We arrived safely in Philadelphia last night and are staying at the Ronald McDonald House. We have a couple of doctors appointments at CHOP today and then the rest of the time Christen will spend resting in preparation for surgery first thing tomorrow. Thank you for the prayers for us. We can tell that God is answering them.

We re-connected last night with a lady here whose family has a little girl who has been in the hospital for 7 months. Her mother has been here virtually the whole time. We first met her when we were here in January.

Please pray that Christen's heart will remain calm today as the surgery approaches. May she be able to see the smiling, saving face of her Savior and remember that He intercedes on her behalf before the very throne of God.

BTW, we did add a few new pictures to the photo album (see the link on the right near the top of the page).

Thanks!
Steve & Debbie

The Surgery Plans

Here is the surgery schedule as we know it now.

We will travel to Philadelphia Sunday afternoon and stay at the Ronald McDonald House Sunday night. We will spend Monday doing pre-surgery stuff at CHOP. Tuesday morning she will go into surgery, and we will be there most of the day waiting since it is a long process (removal of the tumor and then placement of the endo-prosthesis). It is hospital policy that only the parents can be in the waiting room during surgery so for those wanting to visit, Thursday or Friday will likely be best.

We are so thankful for God's daily sustaining of us thus far. It has been really amazing to experience His gracious presence. Times like this give us an opportunity to see it in a way that doesn't normally happen. Christen seems to be taking everything with a tremendous amount of calm and peace. She is certainly more calm than I would naturally be. We ask that you all continue to lift each of us up in prayer, and we are so thankful for how you have done so for us thus far. Without Jesus gracious hand there is no way we could make it.

Steve & Debbie

At CHOP this evening

Thankfully Christen is in Philadelphia this evening rather than Charlottesville. We are waiting while she is having her MRI. We will drive back home this evening after it is complete. Thank you for the prayer. Her temperature went to 100.3 in the evening but through the night it stayed around 99.4. Thankfully it never went to the 100.4 twice within 2 hours which would have caused us to go to UVA instead. Other than a few stressful moments this morning, things have gone pretty well.

Christen is quite tired. Pray that she will rest well on the way home.

Steve & Debbie

Christen is Home!

Christen arrived home yesterday (Wednesday) about 3:30 PM, something that we are very thankful for. Just being together is a rare thing these days, so we really enjoy it when we get it. She is still very weak, and has been struggling with a low-grade fever today. Please pray that it does not go above 100.4 deg because if it does that will necessitate a trip back to UVA, which would likely be a set-back in terms of the surgery.

We are scheduled to leave here early afternoon on Friday (tomorrow) for Philadelphia so that Christen can get her pre-surgery MRI at 7 PM. The current plan is to drive back home afterwards so we can be home on Saturday and Sunday morning. Please pray that Christen will be strong enough to do that, and that if we really should stay the weekend that it will be clear. We have to be back at the hospital on Monday morning 10 AM. Surgery is likely early Tuesday morning.

Please pray that her fever does not go up any further tonight because that would really complicate matters to say the least, and it is causing us a bit of stress as it hovers near the temperature where we might have to go back to the hospital at UVA. We will need to check it hourly through the night.

Steve & Debbie for the family

Return Home Delayed

Christen is still in the hospital this evening suffering with a bacteria infection which is a side-effect of one of the strong antibiotics she has to take because of the chemo. Never a dull moment around here it seems. :-) Thankfully, however, it looks like she will be able to come home tomorrow, and she is feeling better this evening after having felt quite poor all day.

Thank you for the prayers!

Steve & Debbie for the family

Still at UVA

Christen is doing fairly well with this round of chemo, all things considered. The side effects of the methotrexate are beginning to be more of a problem, but they are managing it with pain medication.

We have to wait for the methotrexate in her bloodstream to drop to an acceptable level before she can come home. Please pray that will happen quickly since we won't have much time at home before heading to Philly this Friday afternoon to get ready for the surgery, which is scheduled for next Tuesday.

Steve & Debbie for the family

Last Chemo Before Surgery

Christen is back at UVA today to receive her last chemo treatment before her knee surgery. She was sick this morning, and still feeling the side-effects from the last treatment so please be in prayer for her. She will likely be in the hospital until Monday or Tuesday of next week.

The current plan for the knee surgery is to go up to CHOP (Children's Hospital of Philadelphia) on Friday afternoon 4/11 for an MRI, stay the weekend in Philadelphia, and then be back at CHOP on Monday morning 4/14 for pre-surgery appointments, and then surgery the morning of 4/15.

Steve & Debbie

Finally Heading Home

Just a quick update: Christen and Debbie were finally given the OK to come home this evening. We are all so much looking forward to being together as a family. Please pray for Christen's transition back home, and then back to the hospital on Friday.

Steve & Debbie