Encouraging news!

We received some very encouraging news this morning. The bone marrow sample taken Monday showed only .25% leukemia cells--a huge drop. Joella is definitely responding to chemotherapy. I'm not sure of her exact percentage of leukemia cells when she was first admitted, but it was at least over 25%. Her doctors are hopeful there will be no leukemia cells present by the end of this month. I had no idea the chemotherapy could be so effective so quickly, but it looks like the long-term treatment of leukemia is more about keeping the cancer cells away than continually killing them.

They have also identified the bacteria present in her blood culture--moraxella catarrhalis bacteria which is often present in the ears, nose and throat. Joella had an ear infection shortly before we ended up at Children's Mercy, so this bacteria could very well have come from her ear infection. The doctors keep telling us that Joella is her own worst enemy. With an extremely low ANC, the bacteria naturally present in her body can become a huge problem. It will take another day to determine a specific antibiotic to treat this bacteria, and then I will need to be trained on administering this IV antibiotic at home. This is a very overwhelming thought, but I keep telling myself that I can do all things through Christ who strengthens me! (Phil. 4:13)

Joella has been fever-free since yesterday noon, so her nurses finally allowed her to leave the room. The first thing she asked for was, "Car!" We borrowed a ride-on car with a parent push bar from the playroom, and we made several laps around the floor, Joella beeping her horn continuously. We played for a while in the playroom, and Joella seems to have regained some strength. She was standing on her own at several play centers but still won't take any steps on her own.

During her time in the hospital, Joella has lost over two pounds. During chemotherapy, it's very important for her to maintain her weight, so now the focus has changed to "get as many calories as possible" without being overly concerned about the "quality" of the calories. This is a huge change in thinking for me, but Joella has been enjoying some foods she doesn't get very often at home. Whenever the cafeteria tray arrives, she says, "Pizza?"

Thankfully, the steroid she's taking increases her appetite. Last night I awoke at 1:30 a.m. to Joella pleasantly jabbering to herself. I got up and she said, "Mommy, guac!" "Seriously, Joella?! It's 1 a.m.!" We didn't have guacamole, but we did have chips. Chips sounded pretty good to me too, so we had a mommy-daughter middle-of-the-night snack fest. That was fun.

We have much to be thankful for. God is clearly at work through all of your prayers.

Morning Update

This morning the doctors confirmed bacteria growing in Joella's latest blood cultures from yesterday's tests. They are still waiting for further growth in the cultures to determine what type of antibiotic to use to kill off the infection, and we will need 48 hours of "negative" blood tests for Joella to go home. Thus, we expect to be in the hospital at least a couple more days.

I stayed overnight at the hospital with Kerry for the first time last night (I don't count the night we first drove to the hospital to have her admitted). I can't say that I slept well, but it was an absolute joy to hang out with Joella and Kerry before bed. Joella's fever came down last night, and she actually started to really interact and "play" with us. While the past few days had been extremely miserable for Joella (she rarely would break a smile), last night was full of smiles and giggles and playful interactions. A month ago I would take this completely for granted, but last night it was received as a gift from God.

Ten...

The morning began with our weekly appointment at Children's Mercy, involving a lumbar puncture (extracting spinal fluid for testing and injecting chemo treatment), a bone marrow aspiration and various other treatments and bloods tests. Considering all that took place, Joella did wonderfully and actually slept during the lumbar puncture / bone marrow aspiration!

The good news of the day was that Joella's cytogenetics test results from last week (testing the genetics of the Leukemia cells) came back as "favorable", which means that her treatment will fall either in the low-risk or average-risk category. By the end of the "induction phase" of treatment we should be able to determine which specific group she falls into based on her response to the chemotherapy.

On the downside, Joella also had a fever, which meant at least 48 hours in the hospital. A few days ago Kerry mentioned the Absolute Neutrophil Count (ANC). This measurement has to do with the number of "neutrophil granulocytes" (a type of white blood cell) present in the blood, and it serves as an indicator for how well the body can fight off infections. For a healthy person, the normal level would be somewhere between 1500 to 2000. I imagine that certain conditions can bring this level down below 1500, such as lack of sleep or lack of adequate nutrition, but our bodies are well-equipped to constantly destroy germs and viruses that enter the bloodstream.

This morning Joella's ANC level was measured at 10, which explains why, despite our great efforts (and the efforts of many who came to our home and washed/disinfected everything they could find), Joella is simply going to be extremely susceptible to infections. We may see a lot of Children's Mercy these next few months...

Through all this, it has been so good to turn to the Bible and see immovable, eternal realities that do not depend on the moment-by-moment uncertainties that bombard us. May we all dig deeper and build our hope and faith on top of the immovable "Rock" (see Matthew 7:24), that we might be able to withstand the storms of life and endure to the glory of God.

"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. "

(James 1:2-4 ESV)

Will walk for guac!

Joella has been camped out on the couch at home today--still not much energy or motivation to play. I was sitting at the kitchen table eating guacamole this afternoon when suddenly Joella said, "Guac!" and got down off the couch. I ran over to help her and she (with help) walked across the room to get her own guacamole snack in the kitchen. Maybe it just takes the right motivation!

My mom, who was at our house today when Joella decided to take some steps, said it reminded her of the day Joella first rolled over. Joella was two weeks old and my mom was watching her while I worked in the kitchen. My mom said, "Kerry, I think she's going to--" and Joella flipped, surprising us all.

We're preparing to leave around 7 a.m. tomorrow for Joella's clinic day. She'll have a lumbar puncture, bone marrow aspiration and chemotherapy. We may find out additional information about her leukemia. She will be sedated, but not completely asleep for the procedures. Please pray for wisdom and skill for her doctors and for encouraging reports. Pray that all of us would experience God's strength in our weakness.

Prescription panic

We're home! Cameron and Joella are in their beds after a somewhat-normal family movie night interrupted only by Joella's five oral medications. It was sweet to cuddle as a family again.

The doctors released Joella shortly after noon, and Joel and I drove her home, stopping by a pharmacy near our house. A representative from our prescription plan told us Children's Mercy was not in our plan, but the doctors and nurses said Joella's medications would be available at our local pharmacy. Turns out, none of her medications were available, so as soon as we arrived home, I began a search to find another pharmacy in our plan that carried her medications. Many were closed on Saturday, but I found one that might be able to fill some of the prescriptions. I stopped by there, but the only prescription that could be filled today was her "as needed" pain medication.

I decided to just drive back to Children's Mercy to fill everything at the pharmacy there because Joella needed her medications tonight. When I arrived I told the pharmacist, "I know you're not in my plan, but no other pharmacies were able to fill these prescriptions..." and she said, "What plan do you have?" I told her, and she said, "We accept that! Sorry for the misinformation! We'll have everything ready in a few minutes." Thank you, Lord! I sat down and took a deep breath--I was a bit emotional and panicky up to that point. The afternoon was a bit more stressful than I would have liked, but God was my Helper through it all, and the good news made me thankful instead of taking her medications for granted.

Please pray for God's grace and help as we adjust to the extra vigilance required to monitor our daughter's health and administer medications. Thank Him that we're home tonight.

Going home?

I think this might finally be the day Joella comes home! She has been fever-free for over 24 hours, and we're also 48 hours out from her blood cultures which haven't grown anything.

She received platelets this morning because her level was borderline with the threshold for transfusion, so her level should now be safe to get her through the weekend. Her ANC is still very low, but that's to be expected with leukemia and the chemotherapy she's receiving.

We had a physical therapist come by yesterday to help encourage Joella to walk, but she just screamed. We'll see how she does at home and if there's a need for physical therapy. This morning, she started crawling around her bed and even acted like she was going to climb down, which really surprised me. This was a huge improvement. She was asking for "car" this morning--she wanted to go for a ride around the floor in a small car with a parent push bar. Unfortunately she's still confined to her room because of her possible respiratory infection.

Last night and this morning we've seen many more glimpses of the Joella we know. We've been playing a balloon game with her butterfly balloon. She shakes the ribbon to bounce around the butterfly and then releases it to float up to the ceiling. Then she says, "Oops!" and laughs and we do it again. She plays peek-a-boo with us and with the nurses to show her goofy side.

Last night we watched Happy Feet, and she would lift her arms and "dance" during all the music/dancing segments. For dinner she ate an entire personal pizza--maybe not the healthiest thing, but at least it wasn't Cheerios!

We're all excited to come together as a family again. Cameron, who's been enjoying a personal vacation with family members now admits, "I DO miss them!" We miss him, too.

Please pray for our family as we transition to a new "normal." Pray for wisdom for us as parents to do what's best for our kids physically, emotionally and spiritually. Pray that we would not make decisions out of worry or fear but out of trust and obedience to the Lord.

Dots and Kix and soggy thumbs

Joella's chemotherapy infusion went well yesterday. We will need to watch her closely because this particular chemo can cause anaphylactic shock for up to two weeks after the initial infusion. Please pray that I would not worry about this but would continue to trust and obey God. Joella spiked another fever at 8 p.m., but has been fever free all night and this morning.

Another praise is that we've found a better system for giving her oral medications. We start with the worst-tasting one and then wait half and hour between medications. That way, if she vomits, we only need to repeat one medication. She's not happy to take them, but it's quick, and she's keeping them down.

We've had a really happy morning with lots of smiles from Joella. She is wearing the pink polka dot dress as seen in her birthday picture and she likes her "dots." She ate really well for breakfast and enjoyed her first taste of Kix cereal. She likes the little balls and milk.

We've been reading lots of books, but she's still not up to playing or walking yet. She has been saying more words today, which is encouraging. Her thumb is in her mouth almost constantly here, and it's starting to change shape and get really soggy! I tell her to switch thumbs from time to time. I'm glad her thumb and bunny give her comfort during scary and painful procedures.

We're still awaiting cytogenetics results which are a big piece of the puzzle for her treatment and prognosis.

My devotion this morning was on 2 Corinthians 12:9 "...My grace is sufficient for you..." I've talked a lot and read a lot about God's all-sufficient grace, but it's very sweet to experience it in a deep way in the midst of difficult circumstances. I pray that you will see God's grace as completely sufficient for your circumstances, too. Thank you for loving and praying for us.