Joella In Her Own Words

Below is a short video clip that was shown in the funeral service yesterday.

(Hint: to view in fullscreen, click button in bottom right of video below)

Memorial Service Details

Services will be at 10:00 a.m. Saturday, March 19, 2011 at Lee's Summit Community Church, 1440 SW Jefferson St., Lee's Summit, MO 64081. Visitation will be 6-8:00 p.m. Friday, March 18, 2011 at the church. Burial in Lee's Summit Historical Cemetery. Memorial contributions may be made to Heartland Church, (Memo: Joella Memorial) PO Box 803, Blue Springs, MO 64013.

Online condolences may be expressed at www.speakschapel.com (Arr: Speaks Suburban Chapel 373-3600).

Goodbye

Our little Joella Grace went home to be with her Lord today.

She had a seizure last night and her brain swelled very rapidly this morning due to bacterial meningitis that had spread to her spinal fluid. She did not have any brain function and the machines were keeping her alive. We sang "Blessed Be Your Name" and let her go this evening. She was surrounded by family, many of whom got to hold her. Cameron gave her lots of goodbye kisses and held her hand. I held her body for a long time. I am thankful to have given birth to this sweet miracle and to have held her as she drifted off into the eternity of heaven.

She is no longer suffering and is experiencing wonder upon wonder in the presence of God. Our hearts are broken, but the Lord is carrying us. Thank you all for your prayers. Please continue to pray for our family. Only by His grace can we walk.

2 Corinthians 4:16-18

¹⁶ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ¹⁷ For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. ¹⁸ So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

Update

Joella has continued to spike high fevers today despite fever-reducing medications. They found a bacteria growing in her blood culture, a different type from the last bacteria they found in our previous hospital stay, but they don't know the specific type yet.

She's mostly sleeping and refuses to eat, even pizza. Whenever she wakes up she complains of having a wet or dirty diaper. I feel like I've been changing diapers almost continuously, though most of them are almost dry. She may be ultra-sensitive with the fever.

Just a week or so before her ALL diagnosis, I remember asking the ladies in my Bible study to pray for my relationship with Joella--I found it easy to connect with my son, but it's been more difficult with Joella. Well, Joella and I have certainly bonded during these hospital stays. We've had so many sweet moments, and that is an answer to prayer.

Continue to lift up prayers on her behalf to the One who made the stars, Who knows every hair on her head and every cell in her body, and to Whom nothing is ever a surprise.

And...we're back!

We're back at the hospital again. It's just soooo much fun, we can't stay away! Well, that's not exactly it, but that's what we tell the hospital staff. :)

Last night Joella's temperature was up and down, but it went down right before bed so we decided to get a good night's sleep at home. This morning her temp went up to 101.0, close to the 101.5 guideline for admittance to the hospital. She also vomited twice and was just crying and shaking. The doctor on call thought it would be a good idea for her to come in for observation, and we definitely agreed.

I had not done a good job of re-packing hospital bags last night, so it's definitely only by God's divine help that our whole family was on the road at 8 a.m.--dressed and fed with all of our bags packed.

Joella feels pretty lousy right now, not wanting to eat or drink. Her last temp was 103.8. Her blood counts came back with platelets and hemoglobin at safe levels (she received transfusions of both yesterday), but her ANC is zero. So it's no wonder she has a fever. Please pray for comfort and healing for her. We're thankful for the wisdom of her doctors and that we're here right now.

We're home!

Just a quick note to let you know that we're home from the hospital. A home health nurse came by with supplies and taught me how to administer Joella's IV antibiotic. It will only be once daily for seven days. It seemed simple enough with the nurse walking me through it...we'll see how it goes tomorrow!

It's beautiful, warm sunshine-y weather here. I hope Joella can get out and enjoy it soon. Cameron has been showering his sister with kisses. They seem happy to see each other.

Please pray that Joella will stay fever-free so we can enjoy a little break at home. I'm starting to see what a gift any amount time at home is after being in the cancer ward of Children's Mercy. We've met several families who have been there continuously for months or who come in for a month at a time for chemo...and they are still smiling. Each day is a gift.

Small steps

Joella has perked up quite a bit today. We just had a good time in the play room. Joella took several steps by herself and stood without assistance at the play centers. She's been asking for food almost continuously, but she's also still pretty picky about which foods she'll eat.

They're going to send the bacteria sample from her blood to Mayo Clinic to have it tested against various antibiotics. This process could take two weeks, so in the meantime, the doctors will send us home with an IV antibiotic similar to the one she's been taking in the hospital.

Joella also will receive platelets and a blood transfusion today or tomorrow because her counts are low.

Please pray for wisdom to know when it's safe for Joella to come home and for all the details surrounding caring for her at our house. Thank the Lord for small steps today!

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.

A change of plans

Joella just bought herself another 24 to 48 hours in the hospital when she spiked a high fever this morning. In a way, it's a relief to know we won't be sent home right away, and that she's already here when she spiked a fever. Her chemo is delayed until her fever is gone, but they'd like for her to still have the chemo today.

The Absolute Neutrophil Count tells us how well her body can fight off infections. When her ANC is below 500, she is very susceptible to infections and extra precautions must be taken. Right now Joella's ANC is 10. So please do not visit the hospital or our home if you have any symptoms. Thank you!

Look at the birds

In times like this it's very easy to give in to the temptation to worry. Even last night I found myself thinking about how we will handle the process of Joella losing her hair. Of little importance, really, compared to her body and her life.

God knew I would struggle. He knows I'm prone to dwell on the details which can crowd out the truly important things. The Lord prepared me for this by studying the Sermon on the Mount in Matthew 5-7 in the Bible with my women's Bible study. There's a section in Matthew 6 subtitled, "Do Not Worry."

Matthew 6

²⁸ “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. ²⁹ Yet I tell you that not even Solomon in all his splendor was dressed like one of these. ³⁰ If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith?"

On Wednesday of last week, I went to my Mothers of Preschoolers group in the morning. Cameron came home with artwork, as he always does, and I stuffed it in my bag because I was in a hurry.

Later that night, after we saw the bleeding in Joella's mouth, I just happened to pull out his projects. He had made a beautiful flower print. At the top of the paper it said, "Don't Worry, Be Thankful." At the bottom it said, "If God clothes the fields in such splendor, won't He take care of you?" Matthew 6:28

The next night after I was awoken from sleep with the news that my daughter probably has leukemia, I had to very quickly decide what was important to bring. I instinctively grabbed Cameron's artwork, and it's now posted in Joella's room. God's reminder.

I've only been outside once since coming to the hospital, but God has brought some wildlife to us. We have a big window with a concrete ledge just outside. There is a pair of pigeons that have claimed this ledge, and we are daily entertained by their antics and amorousness.

Matthew 6

²⁶ Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? ²⁷ Can any one of you by worrying add a single hour to your life?"

God made sure I would still look at the birds and think of Him. He is good.

Last night Joella vomited all over herself and me after taking five oral medications. The last one is notoriously bad-tasting, and it just caused her to gag. It had been just long enough to not repeat some of the doses (we spaced them out), but the last one we had to repeat. It was a very helpless feeling for me, knowing my daughter needs these medicines to treat her cancer, and not knowing how much actually made it into her system. Pray for God's grace, help and peace.

We're starting to see some mood effects of the steroids. Pray for wisdom for us to know how best to love and parent Joella.

She is scheduled for an IV chemo treatment today and could possibly go home if she's doing well. I haven't seen much improvement in her energy or ability to walk, so we'll see. Thank you for your prayers.

Brief Update

Joella got "unhooked" for the first time this morning, allowing her to play with some toys in the children's playroom down the hall. She's still not walking or showing much desire to "play" yet, but overall seems to be doing well.

The big prayer request now: Pray that she poops! (I'm sure she won't mind me bringing that up) Bowel movement issues are a side-effect of some of the treatments, and it's been over 2 days now...

One last note: Anyone can "comment" now-- we didn't realize that the blog was set to require you to be a member...

Update: She pooped!

(P.S.- I promise not to post about bowel movements again unless it's a life-or-death situation)

Peace and Progress

I'm giving Kerry a chance to (hopefully) sleep in-between nurse/doctor's visits, and posting an update myself.

There's a lot to be thankful for today. As I was driving our 4-year-old son to the hospital today, I realized that I could spend the entire trip thanking God for things, not even scratching the surface of the grace that He has poured out on us. It's also been a "whirlwind" type of day, as it turns out, but here are some of the highlights:

• Joella has been fever-free for over 24 hours, which implies that she's infection-free at the moment.
• She also has been taking all of her oral medications without (much) fussing, particularly the extremely bitter steroids.
• If all goes well the next couple of days, she will come home Thursday.
• Cameron (our 4-year-old son) got to come up and see his sister and mother after more than 4 days of separation. He's actually been having a blast these last several days, spending time with friends and family.
• My parents also came up to spend some time with Joella, and then they took Cameron back to Topeka for a mini-vacation.

A definite answer to prayer is that Kerry and I had a good meeting with Joella's new primary care doctor, nurse and social worker yesterday. We really like them a lot, and we felt like we received the wisdom we needed to make some good decisions regarding the next stage of treatments. We had many more meetings today, which were also very helpful. We are pretty much on "information overload" right now, so we're excited to have some time to read, think and process all of this new information.

We are so humbled by all who have prayed/encouraged/served/fed us during this time. God is doing things far beyond my comprehension in all this, but He certainly has "built us up" through all of you. There has been much joy and peace these past few days, even amidst the whirlwind of doctors' visits, treatments and the myriad of other "interruptions" throughout the day. Glory to God, glory to God.