Month: February 2016

Outpatient
Yes, we are thrilled that Ellie is now doing outpatient chemo! I’m thankful that we only have to drive a little over an hour to get to our appointments. I’m thankful that we get to go home after a short time at the hospital! We spent about 2 1/2 hours in the van this morning and right around an hour at the Pediatric Day Unit. The staff in the PDU are great just like the rest of the medical staff we’ve had, and I believe we will get to know them really well over the next couple years. I was really impressed with their child life specialist – she welcomed us and told Ellie first thing that she had Elsa waiting for her already! Sure enough, we walked in to Ellie’s chemo room with Frozen playing on a DVD player and a really fun Elsa doll for her to…

No blog post tonight except to assure everyone that… WE. ARE. HOME!!!!!

We’re praising the Lord and rejoicing in all that He’s done!

Jealousy
I’ve been trying to figure out how to write this post for a few weeks. In the beginning of all this, I kept mentioning friends, one specifically, who had gone through some hard times last year involving their kids. The testimony of Jon and Stephanie Bladine through that time was unbelievable to me. I could hear them speak God’s truth to each other and to others looking into their situation. I was watching God’s grace at work during a very hard time. I remember very clearly talking with a friend and expressing my desire to experience God’s grace like that. [I was also very quick to state that I never wished to go through anything like what they were going through.] I was a little jealous (maybe not the right word?) of the way God was holding Jon and Stephanie together. As I look back now, I can’t help but…

Knowledge
We sure are learning a lot about leukemia! We know 100% more about leukemia than we did 2 months ago. I know that we still have more to learn, but we are gaining knowledge every day.

When I think about knowledge, I always think about our pastor’s definition of knowledge and wisdom. Knowledge is knowing in your head the information about something, wisdom comes from experience. He always uses the example of a hot stove burner. You can have knowledge that it is hot and will hurt you, but having wisdom about the hot stove burner will guide your actions more.

Wisdom can often come after pain. We are gaining wisdom in a lot of different areas, and we feel that God is giving us this wisdom to help others in the future.

• We are gaining wisdom about having a child with a serious, long-lasting illness.
• We are gaining wisdom about…

Best
We got some surprising (to us) news today. We met our new oncologist since they rotate weekly starting on Mondays. He is the one who our oncologists in Tennessee talked with before we came back. I enjoyed meeting him today.

He told us we could go home if we wanted. He explained to us that Pseudomonas is the most serious gram-negative infection that Ellie could get. They take it very seriously. When a child is neutropenic (not capable of fighting diseases), they have a strict standard of care for Pseudomonas which involves dual IV antibiotics. This is what Ellie is currently receiving. He went on to explain that when a child is non-neutropenic, there isn’t a strict standard of care – the care can vary. He said Ellie could stop the IV antibiotics and we could go home with an oral antibiotic. When we asked him what would be…

Hope
If you have been following our journey from the beginning, you know that we have days that are harder than others. We have never been hopeless, though to be honest, it has felt a little hopeless once or twice. Today we wanted to take the time to share with you where our hope lies. Many of you that know us personally know we are Christians. Our hope doesn’t lie in the ability of the doctors or in the potency of the medicine. Our hope is in Christ, and in God the Father, the Great Physician and Healer. We know that He may choose to heal Ellie using doctors and medicines, but He is the One who will decide if Ellie stays sick or gets better.

Knowing God – having a relationship with Him – gives us a hopeful peace that sometimes makes others question if we’re crazy or not.

Comparison
I mentioned yesterday that one good thing about the long drive between home and the hospital is that Brooklynn can get in a good nap in the car. Another good thing is that I can listen to podcasts when I’m driving by myself. [Brooklynn and I really enjoy singing together, so we almost always have music playing when we’re riding together in the car.] I’ve been listening to Revive Our Hearts, a podcast by Nancy Leigh DeMoss (now Wolgemuth). I’m a little behind since the crazy has been happening, but I’ve been trying to get through a 10-day series on Personal Petitions.

The petition for Day 6 is, “Give me a grateful spirit.” I know we’ve already talked about gratefulness and it’s opposite (entitlement), but it’s something that’s still a struggle in my mind and heart. Ellie has another bad diaper rash and Brooklynn is staying home from the…

Contentment

But I rejoiced in the Lord greatly, that now at the last your care of me hath flourished again; wherein ye were also careful, but ye lacked opportunity. Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content.
Philippians 4:10-11

Jon and I feel like we are living this verse. It’s so good to be back near home, though we are trying hard to keep in our minds that we are not home quite yet. We are experiencing care from people who have been waiting for us to get back near them. We truly feel like their care for us is flourishing, and we are so thankful!

Jon and I are learning to choose contentment when things aren’t exactly as we hope. It’s very easy to stay in the hospital for a few more days when we choose…

Posted on Day 38

Bittersweet
We had such a wonderful day of travel. The Lord protected us. When we arrived at our first gate, the flight was already boarding. (We arrived in plenty of time to get through security, but bathroom stops and diaper fiascos added up.) We had been approved to pre-board, so we actually got to cut in line and rush onto the plane. There were still rows of seats together toward the middle of the plane, and when we got to a row we wanted, I mentioned to the flight attendant that Ellie had leukemia. She told Jon to move to the row behind and held both rows for us to help build a bubble around Ellie. The flight attendants were so kind to us during the entire flight, and Ellie only fussed a couple times. Brooklynn kept opening the window and saying, “Wooooohooooooo! This is fun!”…