The dramatic process of pulling a tooth

Notice Mikaela in the back using our digital camera to take pictures? You'll hear her little voice angling for the shot...and you'll hear the click of the camera. She was hilarious, snapping about 50 pix during the whole ordeal. Actually, she took some great shots! Here are some pix from Mikaela...the 5 yr old photographer in the making...

The love of a big brother

Caleb adores Sarah...and she adores him right back! His love for her is pretty cool to observe. He is very gentle with her, and loves to play with her. She calls him "fuff" and he calls her "Sarah-bearah".
Their love for each other will certainly be put to the test though. When we move back to Gaithersburg, and back into our townhouse, these two will be sharing a room together. We'll see how much he loves her when she's waking him up at 6am in the morning!

Treatment, treatment and more treatment

Sarah has been working hard in her Occupational Therapy and Physical Therapy sessions. Jen and I always say that Sarah has the perfect personality to push through these sessions. She's a fighter, always has been. It's cool to see that, even at a young age, God is giving even her the grace to get through this.

Sarah loves her therapists. Its basically like a play time for her, with all kinds of new toys, puzzles and games. We had to get her some high top shoes for added stability for her ankles. The reason was that she may do some damage to her ankles in one of her attempts to walk because her legs are so unstable. We looked and looked for some shoes for her...and found out that high top shoes for 2 yr old girls aren't very common. Go figure. We FINALLY found some...the new Air Jordans come in purple and pink, AND in the size we wanted!! So much for #4 getting all the hand-me-downs. Now she gets to rock the new kicks.




This past week was another treatment week at Hopkins...both an IVIG injection and her chemo. The doctor decided to increase her steroids back to the full dose. We had started to decrease the amount...3.8mL, then to 1.8mL, then to 1.0mL. But because she has had a bit of a decline in progress, he wants her back up to 3.8mL, twice a day. We are praying that these drugs help her gain back the little bit of progress she had made.



The other night, Jen had a ladies meeting, so the kids and I had a little dance party in front of Sarah. She was laughing so hard, which is probably indicative of how stupid we probably looked. The song of choice for this particular dance party was "Turkish Delight" by DCB. My kids love that song! It was great to hear Sarah belly laugh. Other favorites include, Phil Joel's "When I Obey" and Kool and the Gangs "Celebration". Mikaela already told me that at her wedding, the song she wants to be our special dance is "Celebration".

Amazing friends

We have many amazing friends. When Jen goes to Hopkins for Sarah's treatment, many people have graciously taken the other three kiddos for the day. This past chemo treatment, our good friends, the Purswells, entertained our other three kids for the day. As you can see, it was quite the day!



Scooters and bikes...in the mind of a 6 yr old, it doesn't get better than this!


Brownie making with Mrs. Purswell was a hit. Mikaela had chocolate on her face for hours.




Craft time...

Seeing Clearly

Everything went great at the eye doctor yesterday. Once again Sarah was such a trooper. Between waiting to be seen and the whole appointment we were there for 3 hours. The doctor informed us that the health of her eye is fine. She is seeing fine and there is no damage that is affecting her in any way other than cosmetic. Basically he said that because of where the tumor was near her spine, it blocked some of the signals getting to her eye affecting some of the growth. Specifically, pupil size and muscles. So, the fact that her pupils are different sizes is permanent and the droopy eyelid is also permanent. We are rejoicing in the fact that there is nothing more serious wrong with her eye, and that if in the future she chooses to have her eyelid fixed, surgically that is certainly an option.

Sarah had an occupational therapy session yesterday and a physical therapy session today. Both went much better than last week. She is definitley not back to where we had seen her best growth, but definitley improved from last week. After being in contact with the doctor, we have decided to go up again on her steroid dose. In the doctor's words, "I want to maximize her recovery, and if she needs to be on a slow steroid taper to maximize her recovery, so be it. The main thing is to have her making progress in walking again like she was a few weeks ago -- regaining milestones and moving forward. I am glad that you have figured out how to get her to take the steroids. I think she needs this medicine." We totally trust him and thank God that this man is caring for our girlie.

A Bright Spot

Even in the midst of all that is going on with Sarah, the Lord provided a weekend away for Dave and I. This summer is our ten year anniversary and we had planned a week away in St. Lucia origanally scheduled for this past week. When Sarah got sick we decided to cancel our trip. (Glad we got trip insurance!) When we saw that she was doing relatively well we decided to go to Bethany Beach for the weekend. It's one of our favorite places and it's close by, so we felt comfortable leaving her for four days. We had such a great time. The weather was terrible, but in some ways it was nice because we were forced to do nothing. We slept in, watched movies, went shopping, ate lots of great food, and when it wasn't raining we were able to take a few walks. We came back refreshed and ready for whatever comes next. Thanks Mom and Dad for taking all the kids, and for giving Sarah all her medicine. I know it was hard for you, but we are so grateful!
As for Sarah, we have been watching her today. After her occupational therapist sees her tomorrow morning I will give her doctor an update. She has a treatment day on Tuesday of next week, so we'll see if he wants to wait to see her then, or if he would rather see her on Friday. We will be at Hopkins tomorrow for her to see an eye doctor there. Her left eye still seems to be affected, so we will see what they have to say.

Tuesday, May 13th

At the end of last week, we started to notice a decline in Sarah's motor skills again. Until that point, we were noticing Sarah improving as she worked hard to regain some of the things she lost. Then we noticed a decline in the improvement...to the point where, on Friday, she was having a hard time sitting up. We contacted the doctor right away.

There is a strong possibility that this set back is a direct result from the reduction of steroids. Our doctor is involved in determining if this is the case. We are watching her decline and her steroid in-take to determine if this is in fact the cause.

Either way, it is still very difficult to watch. Our doctor told us to prepare for set backs like this, saying that "relapses" are to be expected, but it is still very hard to watch. Your hopes get so high after you see improvement, then you are forced to go back to square 1. Our souls are doing well, we are still trusting God. The temptation is to think that "there's a light at the end of the tunnel", an end to all of this that is right around the corner. However, the further we get into this, the more we realize that we are in this for the long haul. This isn't going away anytime soon. The more we realize this, the more we see our need for grace for today and today only. God promises to give us grace for today. We don't know what next week or next month will look like. The only thing we know is what is right in front of us, and God has met us with every step.

Yesterday, our friend (Matt Lowe) underwent brain surgery to remove a tumor. He is married with 5 kids, 1 on the way. When I was putting the kids to bed tonight, we prayed for Mr. Lowe and for his family. Mikaela started her prayer by saying, "Jesus, please heal Mr. Lowe and help Emma (his daughter) to not be scared, and please help them know that you are near to them and helping them."

What a wonderful prayer. That is our prayer for our family as well...that we know God is near to us and is helping us.

Dave

Update

Just wanted to give you all an update. I enjoyed an entire week off from hospital visits. I don't think there has been a week that has gone by since all this started that I haven't spent at least one day at the hospital. I didn't have any visits at all last week. Boy, was that nice!! It was so great just to be home and do normal life, like school, playing outside, and just being together!


We had a clinic visit on Tuesday. Sarah continues to do well. Her counts finally dropped, which I have come to understand is a good thing. Basically, they are trying to kill some of the "bad" cells that are causing problems. When her counts go down, that signals that the medicines are doing their jobs by killing those cells. Go figure. The doctors decided that they would go ahead and taper down her steroids some more. I communicated to them that in my opinion she is getting very little, because she spits them out. Basically, by doing this, we will be able to tell whether the steroids are a necessary part of her recovery. If she continues to improve, then we can hold off, but if she relapses then we will have to revisit the topic. If you would pray that she continues to get better without the steroids. It really is a daily battle, twice a day, to get her to take these meds. The goal will be that in two weeks, she will be completely off the steroids, and as a result three other meds as well, leaving only one remaining med that she will need to take.

I am coming to realize more and more that we are in this for the long haul. I knew that Sarah would have an MRI every three months for at least a year, but as the doctor reminded me yesterday, that she really could relapse at any moment. That does not mean that the cancer necessarily has come back, but she could get a virus that could send her body into thinking that those cells are back, and begin attacking itself again. She is working so hard with all her therapists, that it would be so sad to see all that work reversed. Starting next week, we will have three different therapists coming into our home. Two physical therapist, and one occupational therapist. The girl is being worked hard. I am so grateful to all these people. I know it's their job, but they really seem to love what they do. They get as excited as I do when they see improvement in Sarah and really do seem to enjoy working with her. (How can they not, she's just too cute!)