Tuesday

Well, you've probably been wondering all day what's been going on......us too.

There's not much new here. We saw the surgeons this morning and they are very happy with Julia's progress. However we are still waiting on pathology. Our hope is to hear something definite tomorrow, but that might not happen. The surgical resident tonight told me he has seen it take as much as 5 days. We trust in God's perfect timing. We did have a great nurse overnight who took some time to really answer my questions about how all this works. It's tough when you're part of surgery's rotation because they don't have as much face time or availability as the other doctors. She gave me some of her experiences with similar children and everything she shared was good news. We'll wait to see what our case will be.

Julia had her last dose of morphine overnight and toradol at lunchtime. She seems to be doing well, though without morphine she is much calmer and more sedate. She spent most of the day in bed. It must have been the morphine making her want to play, climb, sing, and dance....for now. She had a quiet day. Daddy was able to get some work done here while she rested. Mimi and Carter came by this afternoon and she had some time to just play with her brother which was good to see.
Diana B brought us lunch and had some fun playing with JuJu. Pastor Bob came and talked and prayed with all of us. Shana came by to hang out and give us our daily supplies. Leann S brought some fun Easter goodies that Julia really enjoyed (note the ears). And Pastor Chris and Anna Ritchie came by tonight to encourage us, laugh with us, and swap hospital stories. It really makes the days go by faster to see the people we love.

It was a fun ttreat to have Linda, the art lady come by to make crafts with JuJu. She was really great with her and Julia was talking to her so comfortably. It really makes a difference to the kids when not everyone they meet here is 'medical'.

We had a fun game of fooz ball this afternoon. Mommy actually beat Carter, but he turned around and beat Shana who had come from behind and was only down by one.....
They decided to check on Julia's bladder function with a monitor in her room. Every four hours during the night they will scan her bladder to see how much fluid it is retaining. This should give us a good picture (without being super-invasive) of how well her bladder empties. Based on the first scan- so far so good :) Hopefully she will still get decent sleep.

Unfortunately Julia chose not to nap today. I think it was a mix of getting off pain meds and not getting out of bed. By evening she was kind of a mess. She now has diarrhea and diaper rash. Please pray that this is just the normal kid kind and not a new problem. We did finally decide to give her a sponge bath and wash her hair. It was good for all of us. She got a nice clean pink gown and was all ready for bed. She didn't seem to mind being washed until I started trying to take off bandaids and random pieces of tape left on her. Apparently she is very attached to these because we had to put fresh ones in their places. And as much as we've all dreaded the ultra- sticky tape around here, Julia appears to like it. The nurses gave her two rolls and she carries them around in her basket with her pacifiers. Your so funny JuJu!

When I put her in bed she said, "Mommy, I just love my new hair!" (It needed to be washed so bad!)

God bless, sweet dreams little one!

Out of the Mouths of Babes

When I was brushing Julia's hair this morning (part of our very limited personal hygiene routine), I said, "Hopefully we can wash you soon and get you clean." (she hasn't had a bath since last Wednesday)

She answered, "Mommy, I don't want to go in the dryer."

She thought 'wash' meant the washer and dryer :)

Though that might be what it takes to get all this sticky tape residue off of her!

A Happy Monday

Not much to report today, but around here that's usually a good thing. The surgeon didn't make it in until early evening because of an extra long surgery. I have a new up close and personal respect for what these people are able to do. It takes a very special person to work at the edge of life and death and keep their cool about them. The hours they put in, the case load they juggle, just the ability to be on their feet that long and at the same time be on top of their game- wow! We didn't get much in the way of 'news'. I did get 'reprimanded' for having let her eat. Turns out the surgeon on call for the weekend who said this was a good idea was not in agreement with Julia's surgeon- whoops. Julia is doing well. Everything working as it should be. Today she only had drinks, goldfish, and dry cereal. She doesn't seem very hungry. Which is good because now that Dr. Pranikoff is back in the house, he said her liquid diet starts, for the first time, tonight. Hopefully he'll forgive me. I didn't realize it was a different doctor that had said it until after he had already left.

He reiterated that surgery was successful, tumor was contained and early stages, her activity is limited only by her own discomfort, and they are still going to consult with urology about checking into her bladder function. He said we should exepct results Tuesday or Wednesday. Again please pray for this meeting- that we are prepared to hear all that is said and that we are peaceful about decisions that may need to be made. We are very comfortable with our oncology doctor and working through all of this with her, but we are not released back to her care until surgery diagnoses her officially and signs off.

Julia has been comfortable all day and had great nurses. She didn't wake up until 9am, so she got her normal 12 hours. She has been playful and chatty all day and out of bed quite a bit. She napped this afternoon from 2-4:30 just like a normal day and was in bed at 9pm. She did mention for the first time today about wanting to go home, so we pray this does not become a big issue. She is definitely not bored. We have crates full of activities and games that she is loving. It has been nice to spend so much undivided time with her, with no other cares besides her well-being.

For all you curious ones out there, I am eating regular meals every day and sleeping well as of yesterday. And every night I get a nice hot shower with lots of pampering while Julia is loved on by family and friends- so yes, I am taking care of myself. Don't worry :)

Please say a special prayer tonight for all of Julia's little friends (and Carter). Some are too young to really grasp what is going on, but for the older ones, this is a lot for them to handle right now, and as time goes on. A part of their innocence was lost with all of this and we pray that they grow in their faith. We pray that their parents have wisdom in talking with them and that they are drawn closer to an understanding of God's love and grace through this process.

We had great visits today with our youth pastor Chris and his wife Traci (thanks for your love and care for us), Shana (thanks for coffee when I woke up, cleaning our room, and being my medical sounding board), Annmarie (thanks for doing our laundry everyday, sitting with me at lunch, and being my other brain in all of this), Leann (thanks for the yummy dinner), and Dean & Misty (thanks for all the yummy food and Julia adores her new bedding- you are so crafty Misty :)

Here are some of the pics from today.....

Mimi kissing her feet (just like everyone else here does :)

Julia leading a round of the Candy Land Castle Game (she tends to win)...
Storytime with Grandpa (they read the same one 10 times, Julia could get used to this)...

One of the highlights of the day- Colin comes around twice a week to do a personal music class with the kids- what a blessing! They loved playing all the instruments and singing along to his songs...

Our little drummer...

Napping happily after a busy morning...

Our medicine monkey, thanks Ally. He makes us smile everyday...

Snuggling with Daddy. So good to be out of bed.

The rest of my playgroup girls... Thank you all for your tremendous love and support and our special time of prayer. I truly could not ask for better friends. God is so good to us surrounding us with Christian families who we can share our lives with- the good, the bad, and the ugly- I think we've checked all the boxes now :)
I don't know what we'd do without our friends- us and our kids. To know that you have people there to pick up the pieces of your life when they fall and to intercede in prayer when you reach the bottom is a priceless gift. I've said it before, but I love the song that says, "We all need sheltering trees, Friends in our lives who get down on their knees, And lift us up before the King of Kings!" These are just a few of our sheltering trees. As JuJu said when you all were leaving, 'Very good.' You are all very good to us.

Monday

Julia is having a great day. She slept her normal 12 hours last night and has been chatty and playful all day. Morphine is a wonderful thing! She got out in the halls riding her car and actually walks with help. She thinks she can do it, but she's loopy and weak and would be a train wreck if she ever gets away from us :) She's been playing with us, Carter, Shana, Mimi, and Grandpa today. She spent some time sitting on the couch and standing supported on her own. She's soundly napping right now. This is the first day we've been able to keep her normal schedule. We had a great personal music class- the four of us- and the volunteer music teacher here. He brought a bunch of instruments and we were all singing and playing. We had a great visit with Pastor Chris and Traci- you guys were so sweet. Julia adores all the attention.

The surgeon- Dr. Pranikoff- is on his way up to meet with us. It is the first time we have seen him since Friday's surgery. Please pray for the consultation with him. We don't know if it will all be official today or tomorrow, but the thought of having to sit down and hear everything at once and potentially make decisions is a lot to handle at the moment. We are prepared for what we are going to hear, we just don't want to hear them say it. They also have to give you all the bad with the good, all at once. please just be in prayer for this process. We are unsure if it will actually happen today or tomorrow. I know Dr. Wofford- the oncologist- is here, but not sure if we are being released from surgery to them or not.

Sweet Sunday

What started out as an extremely trying day, really turned around yesterday. The actions by the doctors, the devotion and attention by our nurse, the new meds, and mostly the prayers from all of you, and the healing grace of God made for a wonderful evening.

(some of the dozens of balloons brightening her room)

By 5:30 pm Julia was finally consistently comfortable. Our nurse's on-the-ball, attentiveness for her meds regiment today made all the difference. She was chattering away in the bed- telling us all kinds of stories, bossing around her brother, asking to eat, saying the sweetest things, and mostly just acting like the JuJu we all know and love.

They had removed her foley catheter around 4pm and by 8pm she still hadn't peed on her own. Right before they were calling in urology she filled her diaper. Not an hour later, she asked to use the potty. I carried her in and 300cc in an instant. Yes!! Everything is working! Praise God!

The surgeon said they were beginning to hear bowel sounds yesterday morning and he wanted to see her eating and drinking in the next 24 hours. Well, Julia must have been listening. We had heard her 'toot' several times and the nurses had her rumblings in her intestines and stomach, so at 6:30pm when she full on lost it because she wanted to eat, we decided to trust her intuition. (Kids have an amazing self-monitoring, healing system).

Okay, all you medical personnel cover your ears and close your eyes for the next few lines........
Her first meal was half a piece of pizza and some pringles. We cut her off at that point which did not go over well with her, but she was happy to have had something. The poor thing has not eaten since Thursday. The nurse knew, but said she just wouldn't watch :) Then we switched back to dry cheerios and ice pops- the typical fare. She has had no problems with nausea or vomiting through this entire process which we are so thankful for- that would really make things much more unbearable.

Last night we had a wonderful visit with Billy's Bible study guys. It was great to see everyone. Julia couldn't get over so many guys in one place. Though she kept asking them all where there kids were. They brought us some beautiful banners from all our friends at church and the room is looking so festive and homey these days. They also brought a mattress topper for me to use on the couch. Can I just say, it was like sleeping on a cloud last night. Thank you!!!!
Before they left they all took a turn praying over her and us. It was a powerful experience. Though only in a pediatric oncology floor are the prayers of the men backed up by an episode of Dora the Explorer. (It's all good- we feel like God has provided that as comfort and relief to Julia as much as medicine.) Thank you all for your steadfast love for us and commitment to prayer for our family. We pray God's blessings and special protection on all of you.

(signs made by her playgroup friends)

Julia started getting ornery around 9pm and difficult to appease, but it wasn't out of pain- just normal 'exhausted preschooler' behavior. I have actually found a place to be thankful for that. I can't believe I'm saying it, but its true. I laid down with her to read books, Bible stories, sing, and pray and within minutes she was asleep. We both went to bed at 9:30 and SLEPT ALL NIGHT in our own beds! She has been hanging on tightly to our shirts for the past 2 days out of fear and pain- to see her comfortable and secure in her own bed is heartwarming. It is just before 7am as I'm typing this and she is still sleeping soundly. They have a wonderful policy on this floor that sleeping children are left alone except when extremely medically necessary. Her night nurse has been an angel and brought all her meds on schedule without any thought from me. They gave her morphine every 2 hours in her portacath and she has slept soundly and peacefully. The prayers of many were answered. Last night we were no where close to this and I wondered when it would ever happen, but it did and we are grateful. Though I have a feeling she is going to wake up looking for the brunch buffet :)

(still sleeping at 7:45am!!)

Overall we are doing well. Carter had a great time with friends and family this weekend and was good while he was here yesterday. He was talking to Julia and bringing her things. They fought over a coloring book to- just like normal :) He loves the facility here and is very comfortable. We want to do as much as we can to make him feel a part of all this, too. We have not had a full conversation with either of them yet about the diagnosis and are waiting until Tuesday for that to happen. Right now this is just our new normal. It feels surreal at times, but it also just feels 'normal' too. This is where God has placed us and he doesn't put us anywhere where His grace does not sustain us and His hands do not reach.

I heard a speaker at Westover once say- when you hear of a family dealing with childhood cancer you cannot fathom being in their shoes, but that is because that's not your road. God gives you the grace to understand and cope only when you need it and He has for us. It is hard when she is in pain and we have to force her to undergo certain procedures while in pain, but overall this is just our life now and we have (crazy as it may sound) found a way to rejoice and be glad in it. We have little things to celebrate each day, we have things to be thankful for, we feel love and companionship, we laugh and play, siblings still bicker :) , and life goes on. I think the next hardest step will be leaving here because the world goes on as normal, even though our lives are forever changed. God is good...all the time.

(banner from our LifeCommunity class)

(cards and a sign from her friends and her Sunday School class)

Humor from the Hospital

We were telling knock-knock jokes to pass the time in pre-op. Julia thinks these are really funny these days. She and Daddy were taking turns. Daddy said he couldn't think of anymore. And JuJu said, "Daddy, it's not that hard. You just say 'knock, knock'."

When told she couldn't save a TV show to watch later, she screamed, "But I wan't my TIVO!"

"Excuse me. I tooted again." (She's said this at least 5 times- yay- bowel sounds again!)

"That's my job- to tell Carter what to do because I'm getting bigger than you Mommy." (Julia)

An Interesting Day

It has been a long day. Julia slept about 2 hours last night and was in a lot of pain. The decisions that were made this morning seem to be effective. It took a little while for the morphine to kick in. The anesthesiologists apologized for the lack of pain care she received the last 24 hours. They should have been called last night and weren't. The nurse she's had all day has been phenomenal- a 20 year nurse and on top of everything- making things happen. (Maureen we love you.) Once her first dose of morphine and toradol were in she was actually singing and dancing with her legs in the bed. It was really sweet. Sadly this only lasts a short time and then she was combative and miserable again. She latched herself onto me around 6am and has been attached to my shirt until 5pm. I think it's all hitting her and the lack of sleep and no food since Thursday makes for an ornery JuJu. She had some good cuddle time with Daddy when Mommy finally got to take a shower, eat something, and go up to the playground with Carter.
The surgeon was very optimistic and proactive this morning. He ordered the removal of her foley catheter, remaining IV, epidural, pulse ox monitor, and NG tube and said she could drink. This made for an interesting, but optimistic day. We are happy to be finally getting her adequate pain relief and thrilled to be unhooking her from so many things. She hasn't minded procedures up until today, but when they ripped off the epidural while she was asleep she lost it and has fought us on the removal process all day, but we have trudged through. It was worth it in the end to have her down to just a portacath by the end of the day :) !!! Yippee!
Carter came to visit and spent the whole day with us, Daddy, Mimi, and Grandpa. Thank you to all the sweet people who dropped by today- the Rendalls, Donna, Lisa, Annmarie, and Shana- your gifts were so sweet and you love and prayers are just what we needed.

Our biggest prayer right now is that she can sleep tonight. She has only had 5 hours in the past 24 hours and it is not cutting it. She will be getting Benadryl with her morphine at 9pm and we are praying that deep sleep comes quickly and easily.

Change of Plans

The anesthesia team was not pleased with her night and the fact that they were not called. They gave her an epidural bollus and rate increase and went to find the toradol she was promised 24 hours ago. When they called the surgeon- he decided to scrap it all. They took out the epidural, gave her morphine in the port, and are getting the toradol up here, too.

She has been amazing through it all. She is my little hero. She has not cried during any of the procedures since we've been here-except the last one when they ripped off the epidural while she was asleep. She is amazing. It broke my heart last night to see her in so much pain. I cannot fathom what her abdomen must be feeling like right now. We pray for a restful day and success with these new drugs on board.

Morning

We started our day around 5am. Julia tried to sleep, but startles a lot which is really painful. When she cries, then she coughs which also hurts. I tried holding her still, but it only worked for a little while. So we only had about 2 hours of sleep. Then she decided she wanted to watch 'Little Einsteins' which seems to be one of her most effective pain treatments so far.

The surgeons came by early and will likely start Toradol today for pain relief. Her spirit is willing to try and move more, but her body just can't. It turns out the Benadryl orders were PRN, not scheduled, so I was supposed to ask every 6 hours- unfortunately no one told me that. Hopefully we can get her some relief soon.

They are going to try to take out the foley catheter and extra IV today- leaving just the portacath- which has not been red since you all started praying. Tomorrow we hope to get rid of the epidural and NG tube.

We pray for a better schedule of pain relief and some good, peaceful sleep today.

Nightly update

Julia has been having a rough night. She finally was able to fall asleep at 3am. She is having a lot of belly pain and she is just sad. They have not been on top of her IV Benadryl and I cannot figure out why. She has orders for it, but I've had to beg for it twice in the past 24 hours. This time it was almost 12 hours between doses. It is her only pain relief on top of the localized epidural. She is sleeping peacefully now and will hopefully be able to until at least 8am.

Her portacath is working great. She has been fever free all evening. She does not seem upset about not having had food or drink. They said swallowing is still extremely painful from th elong intubation, so it hinders her desire a little. They are leaving the epidural in until Monday. The NG tube will hopefully come out soon after. We've been told to expect pathology reports on Tuesday.

I was finally able to hold her tonight. They want her upright twice a day. It was quite a production. A huge thanks to Dana W. for being here to help. It's pretty awesome to have a dear friend who's an anesthesiologist. God has had you there for my kids for all their day surgeries and now this. Thank you. It means so much. She even changed our sheets :) We love you guys. And the towels you brought us are the best I've ever used. Tonight's was a great shower :) Thank you Annmarie for holding her so I could eat and shower. God knew she was going to need two mommies and you have loved her from the start.
Carter is doing great with our family and friends and enjoying all the attention and activities. Yesterday Mimi and Grandpa took him to Carter Bros for lunch, then ice cream, and his favorite Japanese restaurant for dinner. He's loving the attention and playmates. Today he got to go swimming with Ally and had a lot of fun. Please pray for him as we get into this process. All the help and attention is wonderful, but with Julia being so young- he is going to be away from me for quite a while. We are also preparing for how to tell him everything. He is an extremely bright kid who listens to and absorbs all adult conversation he hears. He is also an internal processor and does not like to talk about or express his feelings. This will likely complicate things for us. He will hopefully get to see his sister tomorrow afternoon. He has not seen her since briefly the day before surgery. We just pray this brings him comfort and reassurance and not fear. And pray that she is comfortable and happy while he is here. We are going to be working with Childlife next week to help us know how to talk to him.

We will miss everyone at church tomorrow. We are with you in spirit.

Recovery update

Julia is finally comfortable. She took a 2 hour nap this afternoon. They decided to hold off on the narcotics and go back to IV Benadryl. She is having a lot of pain with her abdomen especially as she starts coughing. Her fever is subsiding and the port site has gone from red to pink- huge praise!! They have removed the line from her foot and switched her meds from the arm to her portacath. It is working well so far and the surgical resident is happy with what she sees. She still has her foley, epidural, and NG tube.

I also wanted to clear up that yes, she does have kidney cancer. Some people were unclear because I did not use that actual word. They are almost certain it is the Wilms' tumor type, nephroblastoma. That is what we are waiting on pathology for- to confirm the type of tumor and to stage the cancer. Yes, we do still ask God for a miracle, but we are ready to find out her treatment plan.

Thank you for all you many offers to help us out. Annmarie is coordinating all of that with our specific needs. She can be reached at amoodie1@yahoo.com

Pain update and prayer request

We are out of the PICU and back in her regular room. She is having a lot more pain today and they are going to try Toradol narcotics on top of the epidural. She is currently running a fever and is red at her port sight. Please pray for NO INFECTIONS and a working portacath. The surgeon is on his way to assess.

She Spoke

She just said her first words (post surgery).....

"turn the TV back on."

The anesthesia team came by to check on her and gave her an epidural bolus and a rate increase. Hopefully we can control some more of the pain for her.

PICU update

She has been sleeping soundly from 11pm-3am, then her arterial IV line clotted. For you medical folks out there- it only had saline running in it, so it was only a matter of time. We feel like God just knew she didn't need it any more. They felt comfortable just taking it out. The port can be used for blood draws and manual blood pressures will be fine. So now she has one of her arms back. She did start to pull out the NG tube, fortunately I was awake and caught her. It has been retaped and she hasn't touched it since. Lots of people are looking at all the stuff being suctioned out of her stomach by the NG tube. Please pray that everything is as it should be. They just gave her her second dose of IV benadryl. SInce she's not on pain meds or sedation this is her main source of relief. We pray more sleep will come soon. Her nurse and respiratory physician have been amazing. We couldn't ask for more. Thank you all for your kind words and prayers. They are life-sustaining.

Resting Comfortably in Him

We are settled in the PICU. Bear with me as this may jump around, but I'll try to give everything we know.....

• The surgery was a complete success. The surgeon is very 'happy' with everything and feels so blessed to see something found so early and treated so quickly. It is hard to believe we began this process only 60 hours ago- amazing.
• There were no complications, concerns, blood loss, etc. Huge praise!!! Thank you all!!
  
• They did put in a portacath as well as two good IV lines. She also has an epidural for pain (thanks Emily!) and Benadryl to help her relax and hopefully sleep. She also has an NG tube- really not a big fan- and won't be eating or drinking for a few days.
• The stitches are disolvable and internal, so no removal. She has an 8inch incision straight across her stomach and they were able to repair her umbilical hernia as an afterthought- kind of like a free gift for us and her.
  
• The surgeon and pathologist are fairly certain it is an early stage Wilms tumor- nephroblastoma. It is hard to be exact because it was found so early so presentation is not the same. The lab results will be back in 2-3 days (this may not include weekends, not sure).
  
• We will be here for at least a week. After the results come back they will discuss treatment plans and schedules.
• There is some concern that her bladder is always so large in scans. Those of you that know her know she drinks water and pees in large quantities, but they will be checking into it. They want to ensure excellent functioning to keep that right kidney strong and healthy. Please pray that this is not a concern.
• She is resting comfortably now and watching Noggin. Thank God for round the clock preschool programming. It has truly made this process much easier for her and a great distraction.
• We are in the PICU for at least a day because of the epidural and then will return to her room on the 9th floor.
• We all had a good long cry in the waiting room and are doing well now. This is the path ordained for us and we are heading down it with confidence. David Crowder's 'Remedy' CD gave us a great time of worship and affirmation through our tears. And we praise God for His faithfulness.
• Please pray for any decisions we have to make. We had to make a fast, high-pressured decision today about epidural vs. narcotics. Please just pray for God's wisdom and discernment as these arise. (some doctors give recommendations, others don't)
  

In recovery, right out of surgery. She responds to our questions by nodding her head. She is feeling some pain in her belly, or just pressure (all you moms know this 'epidural' debate- you feel something), and she is moving her legs. She is not agitated or visibly uncomfortable.

No more tears. We are so proud of her!
Back in the PICU, watching Noggin. It was so sweet that all the doctors and nurses in every department have left her feet uncovered and tape-free to be sure she can have her pacis in her toes. She's legendary around here :) The curls help, too :) It's the little things like that that mean so much to us as parents.

Surgery's almost over......

They are putting in her portacath now for future chemo. They are almost finished. Please pray this is successful and easy. The surgeon has not been out to talk to us. We will be heading to the PICU soon.....

We are in prayer, crying, and listening to David Crowder's Remedy CD (they stream it on their website so you can listen for free).

God is still good. All the time.

Sweet JuJu in preop waiting to go back this afternoon....

here's the tumor we're all praying over.....

update

The nurse just called again....

Her kidney and tumor were just sent to pathology. Please pray for a miracle if God so chooses and an accurate and quick diagnosis as they will then make decisions on how to procede.

Please lift up all the nurses as they assist and care for Julia in the OR.

from the OR

They have called us twice. She is doing well with anesthesia and they are in the midst of the surgery.......

Please pray for Dr. Pranikoff- her surgeon, the anesthesia team, and the pathologists.......

SURGERY TIME

They took Julia back at 1:30. We made the decision to have them do an epidural in place of narcotics. Please pray for no complications from this and perfect comfort for her. Julia has been happy all morning and fine without food or drink. She watched TV, played games, told stories, and in the pre-op was telling knock-knock jokes. She's tired and ready for a nap (they woke her at 6:30am), so was content with her pacis- in her mouth and toes- when they took her back. Thank you for covering her in prayer. They do not know the duration. They have a lot to do and are striving for perfection. We were told 2 to 4 hours or longer and not to be alarmed if it takes a while. They will call us every hour with updates.

....still waiting.....

We have not heard from the surgical team, yet. They have cases come in throughout the night and first thing in the morning is always unpredictable. We're just hanging out in the room. Julia's playing the Care Bear game with Annmarie right now and has only asked for food and drink twice, so far so good. So we wait. We know God's timing will be perfect and we're enjoying the time with her :)

SURGERY UPDATE

We are still waiting to be taken down. All the rescheduling shuffles things a bit. We're all doing well. She's been up since 6 and is watching Playhouse Disney and cuddling with Mommy.

His Word

Many of you are probably following this blog already. baby jonah I received it from a friend a month when she heard it was a baby at Brenner's and have followed them online and in the newspapers. It has been awesome to pray for them from within the same hospital. Her verses tonight were perfect...

He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust..." He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart... For he will command his angels concerning you to guard you in all your ways... "Because he loves me," says the LORD, "I will rescue him; I will protect him, for he acknowledges my name. - Psalm 91:1-2, 4, 11, 14

Thursday Night

It has turned out to be a good night. Julia was much more peaceful after waking up the second time. We've had a full evening of friends, family, food, and freedom out in the halls.

She has periodic spells of anger, frustration, 'get me out of here'- but in between, things are good. When she first woke up she was still loopy, but trying to get around. After a little while though she started to perk back up. She was given the bag of 'spicy chips' she was asking everyone for. This girl loves her some Doritos and Mommy can't even stand to smell them. Not to mention they turn everything orange, but we obliged before moving onto to some healthier fare. I must say it was an interesting next step up from clear liquids- but kids are unique and nurses treat them that way.
Then we decided to go for a walk around the halls for a change of scenery. Halfway down the nurses announced they would disconnect her from the IV pole for a 7 hour "pre-surgery liberty". Yipee! This really got her going. She was running up and down the halls and then she discovered all the ride on toys and we had to try them all of course. Her favorite was what she calls "the coal car". We did many spins in this thing. She likes to ride to the game room and pick out a game, come back to the room, and play it , then take it back.
We did have some great time together playing games and laughing. She was her normal gregarious self. Then the nurses broke out the popsicles, I think she had 5 at last count. She also decided tonight to start using the potty again (she's been in diapers here) and then became utterly fascinated with how far she could fill up the little bowl they put in. It didn't take long. She filled it twice just tonight! Crazy girl! I guess she is still potty-trained :)
Then she got special visits from Martha, her big brother Carter, Daddy, Mimi, Annmarie, and Shana. She was excited to see everyone. Thank you all for everything you did. My awesome playgroup girls who cleaned my whole house today, have taken Carter, and made cool banners for us- our friends who have provided food, to everyone who has sent us the things we needed to make this place feel like home, and mostly for all your love, thoughts, and prayers. It is truly manna to us right now. Knowing someone is interceding on behalf of your child when at times you can't is a priceless gift and I thank you.

To all my WOW Bible study gals, it was a powerful thing to be able to stand in that CT room and pray all the names of God over her. There is true power in His name. By the end my prayer became, "I praise You, I love You, I trust You." and that was all it needed to be. It is no coincidence that we are studying these names now. God's use of the past 3 semesters of Bible study in my life is nothing short of personal divine intervention.

She was really tired by tonight. We let her stay up later to get in one last meal before bed. By 9:45 she was asking me to turn the lights out. We have been told that the surgeons early case was cancelled, so they expect to be on our floor by 6am, take her down around 7am, and start surgery at 8am. It is hard to say how long it will take. They told us to expect 2-4 hours depending on the involvement near major arteries, cooperation with pathology, and possibility of installing a port at this time. We feel very comfortable with the surgeon and with this hospital.
Please pray for reasuurance and comfort for Julia, wisdom and precision for the surgical team, accurate decisions, easy adjustment to anesthesia (we hope to avoid repeating today's post op experience), pain control post op, and we would love for this to surprise us and be benign (God can do that!), but if it isn't we are eternally thankful that we found it so soon and God led us right to it and to these doctors. It still stuns me when I realize this has all only been happening for one day. Only through Him would all this coordination and timing be possible. It is a relief to know that tomorrow it will be out and we can move forward.

Praise God that we have a hospital like this. When I walk the halls with her and look around at the staff, facilities, patients- I am humbled to realize we are in the elite of this world who have the privilege to give our kids medical care. Thank you Lord for the opportunities here. Every once and a while I hear that tiny voice that says "I can't believe I'm in an oncology ward with my child!", but I can say I answer it back confidently with, "Thank you God that I can be!"

Thank you again for your prayers. They will carry us through these next days and I pray you grow closer in your walk with God through all of this and that His blessings fall on your obedience.

In Him.......

Time Change

Change of plans again.

The surgeon had another cancellation so surgery will be somewhere around 8am.

Surgical Schedule

We just met with the surgeons. They have scheduled Julia for surgery tomorrow- Friday (another oncology child got a fever today). Biopsy is not an option because biopsying a tumor like this in a child actually sends the tumor into its next stage. They will start sometime in the late morning, early afternoon. It is expected to take 2-4 hours. They will completely open her abdomen to visualize all her organs. They will remove the left kidney, ureter, and the tumor. They have coordinated with pathology to be on the ready to section the tumor immediately. If it is malignant they will go ahead and put the portacath in her chest at the same time for future chemo. Then they will close. She will likely have an epidural to help with the pain of recovery. The major risks are bleeding, more involvement of major arteries, etc. (your basic major surgery issues).

They are optimistic that what we are seeing is in it's earliest stages. It is not classic later-stage Wilms tumor. We are resting in the fact that God showed it to us really early. She will need to be careful in the future only having one kidney- no football in JuJu's future. And we'll need to be very proactive about UTIs and preserving the perfect health of her good kidney. We have signed the consents for tomorrow's surgery and have also given permission for her to be part of the Children's Oncology Groups studies. This will give us an international team of doctors as a second opinion. They will receive her specimens and leftover tumor for their own research, diagnosis, and treatment recommendations. This will benefit her as well as other children around the world.

She had a good nap this afternoon and woke up happy and hungry, but still very loopy. We will be watching TV, coloring, and eating until midnight. Then in the morning we will wait to find out the exact timing. She will be in the PICU for a day, then back to her room for 5-7 days of recovery.

Billy has just left to go spend time with Carter. My mom has just arrived and my dad is en route from meetings in CA.

CT Scan results

Julia's oncologist just came in to talk with us... the wonders of modern technology. They pulled up her CT on the computer by her bed. She has a large tumor on the bottom of her left kidney. Her liver, right kidney, spleen, and lungs are all clear- huge praise!!! The best case scenario would be that it were benign. The worst case would be Wilms tumor. They said it does not present like a classic Wilms because the larger bumps appear to possibly be cysts. (In this case after removal she would begin chemo. It is a highly treatable disease.) They definitely need to remove the kidney. The surgeons are looking at the scan this afternoon and will then talk to us. Surgery will either be Friday or first thing next week. She is in no danger right now, so they will decide on the best timing.

update...

She's finally asleep :)
Please pray Carter avoids the stomach bug going around.

Julia's CT

The ride down to CT- she was pretty fascinated by the bed on wheels.....
Julia is out of her CT scan. They said they got good pictures. She didn't fight the sedation too much. They let me stay in the room and pray over her during the scan.
She is having a really hard time coming out of sedation and is screaming, combative, and inconsolable. Please pray for her to fall asleep soon and not to injure herself during this. We haven't seen the doctors yet today.

A New Road

It is 9pm and I am sitting by Julia's bedside at Brenner's Children's Hopspital. This is not how I thought this day would go at all.

My morning started praying for Timothy and Stellan, whom God has done some amazing things for today. Julia had an appointment for an ultrasound and VCUG to check on the back-to-back UTIs she's had this month. Carter was being picked up by Emily to go to Bible study with his friends. I figured we all be home after lunch in time for nap and school. Not exactly...

They did Julia's ultrasound and when the tech finished she brought in a radiologist who repeated the scan. I could tell they were looking for something, but they said her kidney was hard to picture on one side. They sent us to the waiting room, then came out to say she didn't need the second, more invasive test. Part of me was relieved, but cautious. They sent us across the street to the pediatrician's office. When the doctor walked in, he told us they had found a tumor on her left side. He was on the phone with Brenner's to find out the plan. In seconds we were handed her chart, told to pick up her scan CD, and head to the 9th floor to be admitted to Brenner's oncology. It was a surreal moment. You hear it and I knew what they were saying, but when I walked out I felt my arms go weak. I put her in her carseat and stood in the rain and cried. This was really happening. I feel peace about her and this situation, I just ache for what she will now go through. It's a burden we carry as moms. We feel our kids pain for them.

I am so thankful for the ways I have already seen God's hand in this. After diagnosing her first ever UTI the doctor wanted to schedule the ultrasound and VCUG. I have to say I was hesitant to do something so involved for one infection. Can't we just wait. I seriously considered telling them 'no' when they called us to set it up. Last Friday she came to me and said her stomach hurt again and it hurt to pee. I took her in for what turned out to be her second UTI and the tests were scheduled on the spot. God gave me His definite answer. Had we not had the scan today this would not have been found. They didn't feel it in the exam and she is acting completely normal. But we did and we found it and now we're right where we need to be.

Billy and I packed all our things and headed to Brenner's this afternoon. They took us right in to her room and the doctor came in to talk to us. They wanted to repeat the ultrasound to explore more and take their own pictures. They explained to us what they were seeing. There is a round bumpy mass, 7cm wide, on her left kidney. They scheduled her for a full, sedated CT scan tomorrow of her chest andomen, and pelvis. This way they will have a complete picture to work with as they plan for likely surgery.

We have had complete peace since arriving here. It is an amazing place and I have total confidence in the medical care she receives, but more importantly- we have been completely covered in prayer by so many since literally the second we received the news. Intercessory prayer is a force you must feel to fully understand. We have been living in 'the zone' as I call it. There are no what ifs or worries, just right now. We color, we play, we eat, we watch our favorite shows- and we face things one step at a time. I have not shed a tear since we arrived. Thank you all! I know I need to do this for her and I couldn't do it woithout the love, support, and prayers from all of you.
Julia is comfortable and happy. She got to take a bath before they started the IV and was swimming and singing in the tub like always. It was really hard to get her out.
She has been so cooperative through it all, though. When they took her labs and started the IV she laid completely still with her arm out on the bed, never even flinched! The nurses couldn't believe it. They said they've never seen anything like it.
She is really enjoying the food in bed, coloring on her tray, and TV all in one place. Though tonight she said, "I don't really like going to the doctor. I'd rather be home with you and Daddy and Carter. But I love you Mommy. You're the best." (Okay maybe I did cry once tonight.) I never dreamed this morning that our day would go like this either. So far, we've told her she has a lump in her belly that shouldn't be there and the doctors are taking pictures to find out how to get it out. So far she seems okay with that. So please continue to pray for her comfort and reassurance during all of this. Pray for the scan tomorrow that they are able to see what they need to and make wise decisions. Pray for the sedation and process tomorrow.

Thank you we love you all and thank you for your love for our family!

Abide With Me

I have had lots of people asking recently how my recovery is going. (For those new to this... I was diagnosed with Graves' disease last October, had my thyroid removed in November, and am now riding the roller coaster of thyroid replacement meds.) I can finally say with more confidence that things are getting better. My diagnosis in itself was a huge blessing because my years of symptoms and the physical trials of this past year. We finally had an answer and it put so many pieces together. I finally felt listened to. My surgery went great and I felt almost immediate relief from the multitude of symptoms, like they had just been shut off. Things stayed that way through the holidays.

After Christmas, though, my levels tanked. No one told me to expect it to happen quite like this. As it turns out your thyroid releases hormones that control basically all your body's functions and these hormones stay in your blood for a month. So I did not feel the full effects of losing my thyroid until January. I felt a little more tired and lethargic, my digestive system slowed way down, I started gaining weight, and just felt generally blah. Then, suddenly, it was like being beat up and thrown in a pit. The lows hit hard. I felt like I was in a drugged state. I was exhausted, sleeping 15 hours a day, falling asleep sitting up, and twice while driving. I started to really get scared by it all. I felt unable to function, like I just couldn't will my body to do anything. It was a humbling feeling. After they tested my blood again and found out just how low my levels were they started to slowly increase it. They can only test and every 6 weeks because of the residual effects, so it was time to wait. So I just had to live in it and wait.

I really tried to focus on what God was teaching me through this. I've always felt like God gifted me with a pretty large dose of patience, but now it was being put to the test. I felt useless, I was short with my husband, my poor children didn't know what was happening, and I don't know when it would end. I told someone in conversation, "I feel like I'm getting the graduate course in patience and I probably don't want to know why right now. I trust God."

I also felt God showing me that I can depend fully on Him and not on my own strength. As believers, we know this, we say, it, we believe it, but how often to we fully trust it. Especially all you moms out there like me. We are the doers in our lives. We are always in motion helping, feeding, cleaning, loving, building, teaching, making, healing, fixing, moving, carrying.......but how often do we remember Whose strength is in our hands. It is not our own. He gets the glory for all things. I can do nothing apart from Him. We have to remember Our Source. It really taught me not to depend on how I felt each day, but to depend on God to give me what I needed and maybe nothing more, but that would be enough. It will always be enough. I felt God asking me who controlled my time. I was starting to feel like it was my agenda we were working on each day, but now I am recommitting my time to Him. Each day brings it's own needs and plans and I have to trust Him to determine our focus. Am I willing and open when I feel Him nudging my heart to call someone, help someone, stop to do something with my kids, totally change my plans for the day? Not only willing, but joyfully obedient? This is the essence of accomplishing His will for our lives while we're hear is being willing to walk with Him and change direction as it comes.

I was listening to the radio one night and they were talking about abiding and what it really means. The definition they were giving means 'to walk face to face". Imagine this with me. Are you walking facing Your Savior? I imagine myself walking backwards while looking into someone's face. This it was it is 'to abide'. In order to do this I have to.....

• trust that He knows where we're going
• look only toward God and not compare my life to those around me
• know Him intimately and talk to Him constantly
• reflect His glory in my eyes
  
• walk with confidence, knowing he sees exactly what lies ahead

This has been my prayer during this time, to learn to abide. Simple obedience.

I am happy to say I am feeling better these past two weeks. The meds boost is taking affect and we are closer to normal range. But even if it hadn't change I would still be okay with it, because I trust His plan and His refining.

Teaching Tray Tuesday

I was curious what the kids would think of this one. We bought the funnels on our most recent trip to IKEA and Carter has been begging to use them. I took 4 empty glass baby food jars (same size). Then I cut a piece of electrical tape into strips and marked off fill lines at varying heights. They use a small pitcher to fill the jars and a wooden mallet to tap them. After his first try Carter put them in order from highest to lowest, which he said was also loudest to softest. We also have a sponge for spills. Julia loved it just as much when she tried it after her nap.
This idea came from a preschool teacher we know. We have been saving the foam for a long time and I let Carter play with it when Daddy is working in the garage. I never thought to move it indoors until I saw it on someone's blog. This was a big hit. The kids loved getting their Handy Manny tools in on the action :)
We pulled out the bean tray again this week after we got new set of child-size kitchen tools at IKEA. One of their favorites is actually the tea pincer spoon infuser. (I looked that one up. I just knew you put tea leaves in it.) They love to squeeze the handles and scoop almost anything- beans, toys, dinner...

Sweet Spring :)

We're so happy soccer season has started again and today was the first game of the season for the Green Turtles. They had kind of a slow start as they all got used to playing on a team again. In the end Carter scored 2 goals and defended 2 as goalie. They won 5-4 and did a great job cheering each other on and celebrating their progress. It's going to be a great season!
Then it was time for some yard work. Carter and Daddy swung by Home Depot for some mulch. Okay, a whole truck full. We got it spread amazingly fast and the yard looks clean and fresh again. I love new mulch, it's like a fresh coat of paint. I can't wait for the flowers to bloom.
Carter was a huge help in his pickup truck. He loves being our delivery man and at times it's really handy. Hauling 40 lb bags of sand is no easy task. He carried 120lbs in one trip! Nice!
All this work makes a girl tired and dirty. Julia's new favorite past time is lounging with the bathtub all to herself. I love listening to her sing and make up stories while she's in there, so sweet.
Sunday, after church we all went out for pizza- then Daddy and Carter had some guy time and went to see the Harlem Globetrotters. Carter was amazed! He loves to watch the high school and college slam dunk and 3 point contests we have recorded. Then he tries the tricks on his little hoop in the backyard. It's so funny to see just how closely he pays attention to every little move they make. Now he has a head full of new ideas.
This is the first time he's seen someone slam dunk in person.
He brought home a new basketball with him and it has not left his side. He eats with it, plays with it, does his schoolwork with it, and even sleeps with it.
(I love spring when we can have school outside!!)

This little boy has some big hoop dreams.