Getting Back in the Swing

Wednesday was our first real break from the hospital in a month. We are happy to have made it through and are looking forward to some normalcy around here. Carter and I had a long day as we both found our roles again. Mine involves taking back the power and his giving it up. Both were tough yesterday.

He is a bright kid and a typical oldest child. He likes to run the show and I'm sure will make a fabulous camp director/referee/CEO/umpire/commanding officer/coach (maybe all of the above) one day, but for know he needs to master being five. He's the type of kid who always needs to have the last word and we have had to really working on 'obedience first, discussion later'. We had made great progress and hopefully he will remember soon. We are also getting back into schoolwork. Julia was very excited, Carter not so much; but we've been here before and he comes around after the battle is over.

We made it through the day (it felt SO long, but we were both still alive at the end). I was talking to him in bed after we said his prayers. I said 'Carter, I really hope tomorrow goes a lot more smoothly. I don't like when I have to get upset and discipline you so much.' He said, 'I don't like it either. I don't know why you do it so much. I hear what you say, but in my head I hear myself wanting to do something else and I listen to that.' Bingo. That would be our problem.

Our church's focus this year is simple obedience. Isn't that truly what we all struggle with?! The Christian life is not difficult to understand. We often complicate it or convince ourselves we can't do it, but we can (with God's grace) if we just go back to the basics. How often to we struggle and strive to do things our way and wonder why its not working? I looked at Carter so many times yesterday and thought, 'Why don't you just obey? This would be so much easier!' How many millions of times a day do you think that very thought goes through God's head when he looks at us? He has given us the perfect plan for how to live in the Bible, clearly laid it out, put it in writing; yet we all have better ideas of how, when or why we should do things. I guess we all need to learn the same lesson. Simply obey first and discuss it later.

Well fortunately today was much better. We actually went somewhere....with people!!! Our playgroup took advantage of the cool spring weather and headed to the zoo! 8 moms, 17 kids, and a caravan of strollers. We were a sight! We had a great day though. Here's most of them...
The kids were all well-behaved and had a good time with each other. We saw the zebras, giraffes, chimps, gorillas, baboons, rhinos, and elephants.

The kids got to ride their favorite carousel after lunch. Julia has been talking about this for a long time...There was also lots of climbing in between which the kids really enjoyed.
It was such a treat for us to be with our friends again. Our playgroup has been meeting every Thursday for almost 5 years and today was the first time we've seen them all since March. It was a simple blessing that touched us all :) Thanks for all the memories and smiles guys! We've missed you!

On the way home I took Julia to the pediatrician because she's been holding her pee the past few days and having a lot of lower abdominal pain. They wanted to check her urine. Simple enough. We'll swing by on our way home. Well, it turns out the pain has gotten so bad, she doesn't want to go. We tried for 2 hours. Finally I told them to just catheterize her because we needed to get the results and get her treated. We got her ready and they couldn't get it because of her intense ability to hold it in. When they finally made contact, she exploded soaking two nurses, the wall, me, her, the table, and the floor. Fortunately the sweet, seasoned nurse got the cap off the tube with one hand and caught what she needed in mid-air, while getting a shower! Now that's talent! After everyone changed their clothes, they started her back on bactrim. We're guessing the infection was caused by Monday's VCUG cathing. We pray now for quick pain relief and complete healing before she starts her stronger chemo drug on Monday. And I thought we'd go all day without seeing a doctor for once, guess that's our goal for May :)

A Sunny Tuesday

Today was a much brighter day :)

Thank you all for your kind words yesterday. I wrestled a lot with my emotions all day. I think it just touches a nerve with parents when people taking care of your child start to say things don't matter. Deep down in the dark places of your heart it makes you think they might have given up. I know its not true and a lie I can't listen to and I am touched by the compassion and love of most people I have met. You just don't want anyone to ever think of your child as less deserving of something because of their cancer. I imagine its similar for parents of kids with any special needs, too. You just want them treated like everyone else because they are. In their minds, the young one's especially, they are not at all defined by their cancer and I love that about them. They are just kids who happen to visit the hospital a lot.

Just when we needed a hug, one came through email- actually dozens. Forty-five of our friends at church have committed to wear 'Hope' bracelets until the end of Julia's cancer treatment as a reminder to pray for her and to bring awareness to childhood cancer. After all, it all comes down to hope. It is what makes us human and unites us with our God. It is the source of my joy everyday, no matter what life brings my way. It is the reason for living.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

There are so many special people in the hospital who are totally devoted to these kids. We had the privilege of spending some time with one yesterday. Betsy is such an angel, I couldn't include her in my frustrated post yesterday, so I saved her for today. Betsy works for Arts for Life and everyday is in the clinic providing art for the kids. She has some planned activities, but mostly just follows the kids wishes. If they sit down and want to paint, she makes it happen in seconds. Julia had a great time painting with watercolors.
And then Betsy asked if she wanted to paint a box- which she whipped up with a glue gun in a matter of minutes. She had a blast painting and getting to pick out all her own colors. Here is her finished box. It came out really pretty :)
It was a great morning with our oncology family. We had several hours between the VCUG and radiation yesterday. There are very few 'NPO zones' in the hospital and safe places for chemo patients so we headed to the clinic floor. It still hits me sometimes how quickly this has become our home away from home. It was our shelter from the storms of yesterday for the few hours we were up there. Even Julia feels at ease as soon as she's there.

Four kids were at the art table- all creating in a different way- all with different cancers and in various stages of treatment. Betsy knows each one of them by name and gives them such personalized attention. As we were sitting at the table, Dr. McMullen (Dr. Hot Dog) came out of the clinic. He immediately walked over to say hello to Julia and asked how she was feeling. He had heard that she was throwing up on Friday afternoon and wanted to make sure she was okay. It amazes me how well these doctors get to know their patients.

We went back to follow up with Dr. Hodges, the urologist today. I wondered what was happening when he wasn't coming in the room. Then he poked his head in to ask if we had done the VCUG. A few minutes later he came back to confirm exactly where at Brenner's it was done. I'm starting to get a little nervous. Her results were not showing up in any of the computers. Let me just go on record saying we will not be doing it again. I will make something up if I have to. He paged the resident to call him and we waited half an hour. He finally came in and said, "Great news, everything looks perfect :) " We haven't heard a report like that in months. Thank you God!! So now we don't have to do the prophylactic Bactrim- yay! And he will follow her with ultrasounds every 6 months to be sure that right kidney is doing its job and is tumor free- yay!

We came home to lunch and nap. Carter went to gymnastics this afternoon. While he was gone, Julia and I played dollhouse in the playroom. It is the simple things like this that I cherish so much now. When Julia woke up we had fun playing in the backyard. It was a perfect spring day. Then we headed out front where Carter took Julia riding in his truck. It is the ideal setup right now because he loves to drive and she loves to ride. One day it will change, but for now its great.
He drove her around for a long time. She just sits so sweetly with a happy smile on her face. Our own little 'driving miss daisy'.
Then we all ate dinner and left for Carter's last soccer game. I can't believe the season is over already. Sadly I've missed a lot of it. This was a great game though. His whole team played well and really went after the ball. They almost all scored and had some good passes and blocks. The weather was perfect and the game, too. A good way to end the season.
When we got home the kids went up for their bath. It was so great to hear them laughing and see them in the tub together again. It has been weeks since they could. It makes everyone feel a little more normal and routine around here. It is so nice to be able to put them both to bed at a normal time again. Here's Julia before bed giving her new fish a quick checkup. I couldn't help but smile when I walked in and saw her pressing her little stethoscope up to the side of the glass :)

Here are some joyful moments from over the weekend. Sadly I was in bed all weekend and couldn't spend time with the kids, but I tried to make the most of it and enjoy my family as a spectator for once. I love watching them laugh and play together. It was so warm and sunny they wanted to be outside which is fortunately right out my bedroom window. I love these pictures. Julia was giddy with delight, power, and joy being the one manning the hose and Carter loved being chased. Their laughter filled the room and danced around me for many hours :)

All Bets Are Off Now... but I still want to care.

Today I'm feeling annoyed, so excuse my rant, but its been a long day...

I am finally starting to feel better. I went to urgent care Saturday morning to look into the cause of my fever and body aches. I tried to see my doctor last week, but it was 4:30 when I called and they close at 5, so he wanted me to go to the ER. (I'm sorry my daughter's radiation and chemo inconveniences his time schedule. I was not about to leave her now to sit in an ER while she's at home getting sick without me.) He has sent me to the ER the past 3 times I have called him and I have waited for hours, paid $200 each time, been misdiagnosed every time, been prescribed unnecessary meds, and been told to follow up with my doctor the next day who never has appts and I have to see his PA. Is it just me or are ERs not supposed to be used as doctor's offices?! It is an absolute crime that we live in a city this big and the only medical care available after 6pm is the ER!! Anyway, I went on Saturday morning to urgent care and they ordered a CBC, but guess what their machine doesn't work anymore so they send their labs out and you get them next Tuesday- what?!

The doctor put me on antibiotics anyway because of Julia. Another reminder that everything is now different. So much for avoiding unnecessary antibiotics... Hearing all the doctors and nurses in there talk about her case just made me cry all over again. So I filled my prescription and spent the entire weekend in bed healing. It seems to be working and in the end we'll probably find out it was a virus.

Julia had her VCUG this morning to check on her urinary function in the remaining kidney. Dr. Hodges wanted her sedated if possible to save her the experience. I tried to get it arranged with no luck- 2 procedures is too long. The xray lady just kept saying we don't do that for this procedure. We arrived this morning and they started right away. It was horrible. They take off all their clothes, strap them to a board the width of a balance beam- with velcro straps from shoulders to hips. Then they catheterize them and pump their bladder with 2 bottles of contrast dye. Then they rotate the board back and forth for the next 20 minutes taking pictures. She screamed through the entire thing. Then they want them to empty their bladder on the table to be able to take pictures at the same time. So they tell you to help them relax so they will go, but the only thing you can do is talk to them and touch their head while they're strapped to a board under a moving machine 5 inches from their body. It was the longest 45 min. It was so hard not to cry, but I didn't want to upset her. I just pray she has no real trauma from it all and that God erases it from her memory. It makes me sick that they could sedate kids or at least give them something to calm them, but they don't because this is faster and easier. It was by far the most traumatic thing she's been through so far.

It just really hit me today how much changes when you have cancer. All the things that used to be a big deal and important no longer really matter. It suddenly trumps everything else. We used to worry about giving her meds and in what combination. Now they just give her whatever. She can have as much zofran as it takes to stop throwing up. It doesn't matter what other drugs she's on before we give her something. The chemo she gets weekly is toxic anyway. What's a few more xrays? she has dozens more ahead of her anyway.

Mason's mom and I were talking about sedation. We both remember when that used to be a big deal. When a healthy child is sedated, they get their vitals checked, they're on monitors, they are given a post procedure checklist, they are kept under observation until they are fully awake. None of that matters when your kid has cancer because they're doing it anyway. They do it day after day if needed. And depriving your kid of food and water for 15 hours every day is suddenly not a big deal to anyone. Dr. Sam wasn't there today, so his boss did her sedation. He gave her twice what she needs (because he went on weight, not notes and experience). They ended up sending her home with me- still sedated! Once they get one intentional movement from the kid, they're out the door, off to the next case- and the nurses say goodbye. So I drive her home monitoring her breathing the whole way. She didn't wake up for another 25 minutes. I just want to be normal again.

And seeing poor Mason so sick, neutropenic, and no extra precautions taken. They don't say much about it because I think most parents don't follow them or don't understand enough English to really know what to do. So much of what you learn to do is from reading, not from anyone telling us. I guess its true though what they say... It's going to happen anyway, you can't really prevent it.

Today the anesthesia nurse was talking about her hair. I don't know why they insist on doing this. The radiation nurse was saying how much she loved the curls and asking if it would come back that way. She said no, probably not- it comes back straight in most kids. Then she said we'll all just be so happy she has hair again it won't matter. Well, you know what it will matter to us, in a small way, but it will matter. I'm tired of people saying stuff doesn't matter!

Once cancer is the big deal, nothing else really counts anymore. I just want to still care, but it starts to feel like you can't care about anything really- just have to ride out and take whatever happens. Right now it really stinks.

Tomorrow we go back to the urologist for the results from today's test. Please pray everything is normal and healthy and no more tests. Her next dose of chemo will actually not be until Monday now. The next drug is the strong one and she needs to wait a full week from the end of radiation before she can start it. We are very thankful to have completed radiation now. They actually gave her a graduation certificate today and were very sad to say goodbye to her.

Finally Friday

We are so happy to have made it to Friday. This morning went very smoothly for Julia. She slept 10pm-10am and everything was running smoothly when we arrived at radiation oncology. Mason was already getting his radiation. I sat down to talk to his mom. She said the doctors decided they wanted a feeding tube put in. he's lost 4 lbs since Monday. His chemo is at the point where it gives him sores in his mouth that prevent him from eating or drinking. They typically put them in with kids awake, but his mom really wanted him sedated. Our favorite Dr.Sam, said no problem he would do it after his radiation was finished. he is truly an angel and cares so much about each one of these kids. I had the chance to pray with Mason's mom in the waiting room while Mason was getting his tube. I also gave her the tidbits I had learned from when Julia had hers in after surgery.

A short while later anesthesia showed up from surgery because they were supposed to sedate Julia today (Dr Sam had somewhere else to be.) He actually came out of the room and told them they could go because he would take care of Julia because he knew her best. I was floored. His heart is so huge. He even baked her cookies last night- himself! He's been promising her some all week and sure enough he brought them out for her. Each of the nurses gave her a gift, too. One got her a book and the other found her a curly-haired, blond doll like her. It is such an amazing gift from God to have this team caring for her.

Mason came out okay and his mom was having a really hard time. She is feeling so overwhelmed right now. She's in the hospital with him all weekend, alone. She doesn't seem to have friends she can call. She called her mom in SC to come help with her 7yr old and 1 yr old. She has never mentioned a husband. She did ask me today if I though my church friends would pray for Mason. So please, remember him in your prayers. He has 8 more months of chemo and 3 more weeks of daily radiation. She is very weary at this point and just wants to see him feeling better. Then Dr. Sam had to tell her he would not be the one sedating the kids next week and she just fell apart. I gave her a hug and said a prayer and she was wheeled back up to the oncology floor.

Julia came out of radiation fine. The first thing she asked was, 'where did my cookies go?' Unfortunately, once we got home she started throwing up. After 4 times I called the doctor and they had me give her more Zofran. That did the trick and we got her cleaned up. I was fortunate to talk them into leaving her port access in for her one last treatment Monday, but unfortunately it got thrown up on. Thankfully Dr. Tom had the supplies we needed to change it and got her cleaned up. She is now gauzed, taped, and Glad wrapped. Hopefully that will hold us until Monday.

I am feeling much better today and have eaten well all day. I am still running a low grade fever and keeping my distance from Julia as much as possible. Please pray for fast healing and protection for everyone else. Billy had this earlier in the week and sadly shared it with me.

Carter is doing well today. He was a huge help rinsing Julia's hair for us and assisting Dr. tom. He has such a heart for his sister and is happy to be able to do something to help.

To all my playgroup girls, I miss you all terribly and hate that I can't be with you at the Women's Retreat in Myrtle Beach. Have a wonderful time! Sing extra loud for me, take good notes, fellowship till the wee hours, soak up the sun (and the Son), and have lots of good laughs. I love you all!! We'll see you soon. We'll keep an eye on all the hubbies and their 'little charges' for you :)

Long and Scary Thursday (Week 3)

First off, let me say that Julia is fine.

We had a good morning. Not being at the hospital until noon made it seem like we had all the time in the world this morning. Julia went to bed around 11:30 last night and finally ate around bedtime. We had trouble finding things she would eat last night. Frozen Gogurt tubes finally worked and she had 3 before bed. She slept well until 9:45 and woke up happy. We made it to the hospital for chemo at noon, Carter and Mimi in tow. They did her chemo and explained it all to Carter. We ran into Mason and his mom in clinic. He's running a fever and feeling really bad. He will be admitted after radiation today. Please pray for his comfort and healing.

The kids had fun playing with all the toysand racing around th eroom. I love their faces in the above picture :) We squeezed in a game of fooz ball before we left. I quick ran in the bathroom to drink some water and eat my yogurt.
Then Mimi and Carter went to the cafeteria for lunch and Julia and I headed to radiation oncology for her exam with Dr. McMullen. We waited a while and he was pleased with her progress. She is not showing any ill effects and they don't suspect she will- huge praise. They are guessing the pain in the center of her abdomen is related to the hernia repair they did with her surgery. We'll watch it over time. Everything else looks great.

Then we went back to the waiting room. It was the first time I've gotten a chance to really talk to Mason's mom. They were running extremely late and we ended up talking for 2 hours. It was a great conversation. We really connected on our situations. She is on a very similar path, about a month ahead of us so it was good to get to ask questions and compare our experiences. It was amazing how many times we knew exactly what the other person was about to say. It was touching to meet someone in the same shoes- dealing with cancer in a preschooler, daily trips to the hospital, sterssed out siblings at home, kids who can't eat, etc. We both never expected to be where we are now. Mason is one of 40 kids each year diagnosed with this condition and Julia is one of 20 kids with hers. Its still hard to believe sometimes.

It turned out sedation was early today and radiation was behind. They finally took Mason at 3pm. Julia started to lose it. The hunger, thirst, and fatigue were just too much. She was screaming, hitting and throwing things- just miserable. Fifteen hours without food or drink is just cruel. The nurse came out to actually start the sedation in the waiting room so she didn't get too hysterical. They had me walk with her to calm her down. About this time I'm really feeling the need to eat and drink, too. I'm still achy from the bug I'm fighting off. We are almost there.

Her sedation went smoothly and they said she'd be done soon. Then they started having equipment issues and it took twice as long as usual. By now Carter is starting to lose it, too and I am feeling crummy. They finally finished after 4pm and we were headed home with two whining kids and a hungry and achy mom. I got in the car and downed a bottled water with my advil. Not a smart move. I start feeling worse and worse as I drove. I started getting tunnel vision and losing my hearing on an exit ramp between highways. I knew what was happening and prayed that I could make it around the loop to be able to pull over. I actually blacked out on the ramp getting off of 40. By the grace of God I managed to safely pull over. I told my mom she needed to drive and she was still trying to figure out what was happening. I walked around the car and collapsed on the passenger's side (thankfully not on the road!). Fortunately she caught me under the arms from behind. Within a few minutes I was feeling fine again. I came home and finally ate and drank the equivalent of 2 meals and lots of OJ. I felt much better. So I am now resting in bed. Billy had this achy feeling for 2 days earlier this week. I think the lack of sleep, fighting this achiness, crazy schedule, limited food, and the meds I take regularly got the best of me. I feel fine now and no, I will not be the one driving to the hospital tomorrow :)

I am so thankful for the Divine intervention that kept us all safe today. Julia is doing well with everything and was happy to get to play in the backyard with Mimi tonight. Carter is having a rough time tonight. I don't know if it was the hospital experience today or not, but he has been extremely difficult tonight. Please pray that we know the right words to say to him and for extra patience in dealing with his hysteria. He told us at bedtime he is tired of Julia getting all the attention and special treatment and this week really stinks. I had to agree with him it has been rough. We are giving him extra attention and keeping his schedule, but this week has been really hard on everyone. Its sucha fine balance trying to maintain schedules and discipline in the face of cancer. Parenting is hard enough. Please pray for wisdom and discernment for us. We are so thankful to only have 2 radiation treatments left.

A huge thanks to Chris for taking him to soccer practice tonight while Billy took care of me and my mom took care of Julia. I will be recupperating in my room until tomorrow and am doing nothing and being waited on. Please pray for rapid healing. Julia has radiation at 1pm tomorrow and then we will enjoy a two day break before our busy Monday of appointments and procedures. We are looking forward to a bright, healthy, and sunny weekend of family time.

Happy Wednesday

Thank you all for your love and prayers. I woke up this morning with much more energy and feeling excited about the day, despite getting the exact same amount of sleep.

I had a good time with friends last night meeting with Kate, an old friend of ours, who works with KidsPath- helping children and their siblings deal with chronic illness. She was an excellent resource for all of us and had some great tips for helping our children through all of this. Carter and Julia are so thankful to have a large circle of friends (under 5) who they are used to seeing nearly every day. It has been a difficult transition for every one.

It was kind of surreal to hear everyone talking about her cancer last night. At times I felt like it was all just a dream and I was watching it as an outsider.  It is a reality check to hear it all talked about by others, especially close friends.  It is a strange contrast. In some ways it seems like we've been in this for so long now and in others it still hits me as a surprise sometimes when I hear it. Kate had some very helpful advice for helping Carter deal with his emotions. He's had a lot of anger lately and has taken to kicking us in the shins when he reaches his breaking point (completely out of character for him). We are getting him to talk more and hope that this continues. He's very excited about going with us to chemo and radiation tomorrow and being a part of the process again. I think it will be really good for him.

Julia had a fun night with Daddy while Mommy was out. They played lots of games, puzzles, and some yummy food. She even sweet-talked Daddy into ordering her a pizza. When I came in at 11pm, she was downing her third piece! Our house is starting to feel like a dorm :)

Carter and I had some good playtime this morning before Julia woke up. He likes to play cards lately and actually learned to play rummy and speed yesterday. I'm so excited we've branched out from go fish and war :) Then we played some basketball and caught up on some of his Awana lessons. He was happy to be going back tonight after missing several weeks.

Julia woke up a little feisty and begging for goldfish, but cheered up when we got in the car and turned on the DVD. Annmarie came along to keep us company. It was nice to have someone else to play with. Our game of Dora go fish was much more entertaining with 3 :)
Our laughs attracted the little boy from the waiting room next door. I've seen them in passing every day we've been in there, but haven't had the chance to talk. (We share Dr. Sam during his time down in radiation oncology.) The boy usually sad or sleeping. Today I finally got the chance to talk to him and his mom. Sweet little Mason is almost 4. He had an earache on Feb 28th and they found a lump under it on the side of his face. They sent him in for a biopsy and discovered he had rhabdomyosarcoma. He is now in the midst of chemo and radiation. It was a blessing to connect with his mom. It really changed my perspective, too. He is in the midst of 28 straight days of sedated radiation and 10 months of chemo. He is at the point now where the chemo is making him sick and he has lost his hair. She was overwhelmed that Julia had to have major surgery and I was taken back by the duration of his treatment. It just shows you how uniquely and personally God equips us and gives us grace to handle our own particular life circumstances. He handles each one of us in such a special way.

My heart was really aching for Mason's mom, Jessica. She seems quite overwhelmed. Parenting and patience are difficult for her on a good day, much less now. I feel burdened to do what I can for her. We will continue to talk every day until we finish next week and God has actually shown me some neat, tangible ways I can bless her. Please pray for sweet little Mason and his mom, and that I have the words God needs her to hear.

Mimi is here now and the kids are having fun with a new playmate. Carter and i are both completely healed of our infections. I am actually feeling a little rundown at the moment and hope some good sleep tonight will pick me back up. Tomorrow will be chemo (1 drug) and radiation. Dr. McMullen will also check her tomorrow and we are hoping for a good report. We found out today she will actually be able to eat breakfast Friday because her treatment isn't until after 3pm. So, we are excited to resume a more normal sleeping and eating schedule on Friday, Saturday, and Sunday- hopefully. Thank you all for your prayers through this week. We can feel it and are encouraged by the process so far.

Tired Tuesday

Thankfully, the sleep plan worked again and Julia slept until 10am. She was more persistent today about asking for snacks on the way to the hospital. I kept telling her we needed to talk to Dr. Sam first. She eventually said okay, and actually apologized for asking- I had to shed a quick tear on that one- poor JuJu.

When we arrived at the hospital she said, "I'm not going in today cause I'm not 'talking' anymore. I'll stay in the car and finish watching this... But you can go in if you want?" If only it were so simple. She did go without too much of a fight and was actually very chatty and playful. I brought a smaller load of stuff with us today because it was only a radiation appointment. Bad move. The sedation team was held up an hour in another dept. I had to get creative, especially because she wanted to eat.
Fortunately I did have the Little Einsteins playset and the Dora coloring set. All these hours of watching L.E.s must be paying off because she wowed me with her knowledge today. She recognizes all the scenes and talks about the Leaning Tower of Pisa and the 'Stynx' in Egypt like she's actually been there.
Its amazing to me how quickly (as a mom of a chronically ill kid) you have to create this alternate universe for your child. We are at the hospital every day in a variety of situations, but you find a way to make it 'feel' normal. The sad part is that after just a short time it does feel normal. At least she can be happy in the environment and not feel afraid. A lot of that has to do with the incredible hospital though who does everything in their power to make it enjoyable. Every person in radiology- nurses, secretaries, techs, support staff- greet her with huge smiles and hellos and gifts of some sort. This crowd has been ordering kids meals for lunch all week, so they have a surprise for her when they see her. Its the little things.

Dr. McMullen's resident came out to talk to me about her belly pain. They are slightly concerned that something may be going on, but not too much because she is still bright, happy, eating, voiding, etc. We pray this is true. She will see the oncologist on Thursday and Dr. McMullen has put her on his schedule on Thursday for an exam when he's back from vacation. Please pray he is having a great time wherever he is. I feel a special burden in my heart for the oncology doctors and nurses and I hope he's having a great time with family.

We got started around 12:45 and had no problems. He gave her zofran first to counteract any more vomiting. He suspects it was from the sedation. He only gave her a half dose of sedation today and it worked great. We actually had to really work to wake her up. Dr. Sam calls her his little sleeper- we knew that already :) He also told her he's going to bring her her favorite cookies for after Friday's treatment. Such a tender-hearted, talented man. She woke up much more responsive than yesterday and was talking by the time we got to the car. She told me, "Great job turning the car Mommy." As we left the parking deck- too funny.

She was quite enthusiastic by the time we arrived back home and was very resistant to nap. She finally went down around 3:30. This schedule is working for therapy, but is tough on all of us. The days are long with Carter up at 7am and Julia up until 11pm. I will be thankful when radiation is complete and we can go back to 'just chemo'. It sounds so weird to say that. It has been tough having constant shifts during the days without breaks because of the kid's weird schedules. They both need me and deserve the attention and time right now. Please just pray for energy and endurance for the rest of this treatment schedule. Carter is very excited that Mimi comes tomorrow. (Hopefully she's been eating her Wheaties :)

Radiation Monday

Fortunately my plan for Julia to sleep in worked and she didn't get up until 10:15 which made our NPO time much more manageable. She woke up happy and eager to get dressed. She brushed her own hair and asked for two pigtails. So far so good. We dropped off Carter at Lily's and applied her emla cream and Glad seal (we've gotten much better). She was happily watching a movie on the way to the hospital. When we arrived however, she did not want to get out of the car. She finally said she would, but we were only going in to 'talk'. She's on to how this whole thing works. I told her that yes, we were talking first and it was time to go.
We read books while I signed the consents with Dr. McMullen's resident. He was very encouraged that her radiation plan looks like it will miss the most sensitive areas. We still need to get absolute confirmation, but it looks good- her height is working to her advantage. Thank you all for your prayers about this issue. We would hate to see her have to deal with breast or ovarian cancer in the future as a result of this treatment. He did talk more about the bone marrow issue. The reason radiation can lower her blood counts is because if it goes through major bone dense areas, the blood cells are altered. In her case it is her lower spine that is in the field. he actually said the bigger risk is scoliosis because the bone would develop out of proportion and curve. For this reason they radiate the entire vertebrae of the ones in the field to try to ensure even growth.

Then we headed up to the 9th floor for port access. The elevators are still one of her favorite parts, which is funny because waiting form themn takes forever! It was music class day in the clinic waiting room, so we were greeted by a lively band of chemo patients. It was very exciting for Julia. Nurse Karen did a great job with her access and Julia didn't even flinch. We will now leave the access in for the entire week for radiation and chemo. Here's the fish and giraffes- her friends outside the chemo treatment rooms. She's named all the fish and loves the way they all dance around when she arrives :) and giraffes just happen to be her favorite animal (there's a family of 3)...
Then we headed back down to radiation oncology and they took her back for treatment. Dr. Sam (from the sedation team) did a great job with her. The nice part is when she tells me she only wants to talk to the doctors I can tell her okay, because they sedate her in my arms from a tube running out her shirt, as we're talking. It's easy and painless and she's off to dreamland. The drug they are using to counteract the anesthesia is a tenth of a dose of clonidine. It works wonders! The treatment didn't take too long and she came out of it fine. She picks up her conversation right where she left off. (That's Dr. Sam at her head in the picture.) Here's what the radiation setup looks like...

I was able to eat and drink something while she was under and met a very nice elderly man in the waiting room who was being treated for stage 4 lung cancer. He'd had a cough that wouldn't go away and doctors kept prescribing allergy medicine. He begged his doctor to do an xray. That's when they found it. He was very peaceful about his condition and was more concerned about Julia than anything else. He has 4 kids of his own. I pray that God continues to put people in my path who I can talk to and point to Him. I don't ever want to be too caught up in our own situation to lose sight of God's plan in all of this.

Julia woke up peacefully and we were free to go. She was still pretty groggy, especially with it being naptime. I gave her some food and water while we drove and she started to perk up. Here's her radiation field for the week and her port access securely covered on her chest. Her steri strips are now all gone and her scar looks great. Check out her new belly button...
This morning and afternoon she has been complaining a lot that her stomach hurts on the left side. It is very difficult to determine the reason. It could be the surgery, the chemo, or the radiation. I gave her tylenol before her nap and am waiting for her to wake up to really assess how she's feeling. She was starting to cry pretty hard before nap, but it was difficult to separate the tiredness from the pain. Please pray that she does not have any major internal issue and that her pain goes away. I hate to see her in pain. She is such a trooper and she has an incredibly high pain threshhold. I want to be sure I'm doing everything I can for her. It melts my heart that she just wants to be held. I am so thankful it is that easy.

She actually woke up from her nap at 7pm throwing up. After a sponge bath and sink hair wash (she can't get in the tub this week), we gave her some zofran. She's now eating goldfish and watching Little Einsteins. Hopefully we can get some good food in her in the next few hours to hold her over until tomorrow afternoon. Thank you for your prayers!

Thank you so much to the cleaning fairies who cleaned our house while we were at the hospital today. It was truly a breath of fresh air when we walked back in. It is so important to everyone's health, but so hard to get done in a day. I appreciate it SO much!! Thank you!

Sweet Saturday and Quiet Sunday

We were so happy to see the sun shining on Saturday and to wake up and not have to go to the hospital :) Carter woke up saying, 'Where's Julia? I want to play with her.' Such a sweet brother. I took Carter to gymnastics for the first time in a long time and Daddy got to spend some one-on-one time with Julia. Then we came home and played on the swingset. The face says it all...In the afternoon Carter went to his friend Leah's birthday party. It was great for him to see his friends again. It was a teddy bear tea party. Here he is putting on the hat he made for Elephant, so cute...

Then we all headed out to his soccer game to cheer on the Turtles. It was the perfect afternoon to be outside. There were only 5 kids today, so they all got lots of play time.

Julia was excited to see the ice cream cart when we arrived...Carter loved being the goalie and had some good saves. I love the way his tongue hangs out when he concentrates :)

When we came home, it was time for some planting. The kids have been so eager for spring to plant seeds and start a garden. We finally had the chance to plant some of those seeds they've been saving. They were so sweet and helped each other. Then we watered them and put them on the steps. Julia started jumping around saying, 'Let's watch them grow?' She's been outside several times since just to see if they've grown yet. I love the hopeful anticipation of spring.Then we played out back some more. I love spring evenings when the sun is setting and everything outside is warm and glowing, the kids included :)
Daddy made them a picnic dinner- always a big hit in our house.
Then they played in the sandbox until it was time for a bath. This is by far one of their favorite places to be- always has been. They have spent countless hours in the sandbox, every season of the year. It was the perfect ending to a great day.

It was definitely a full day. By the time everyone's heads hit the pillow, sleep came easily.

Today has been a quiet day. The kids and I stayed home from church. We can't risk Julia catching anything this week because of her daily radiation treatments. We've had fun playing, doing puzzles, playing games, watching TV, and baking cookies. Daddy and Carter took in a few rounds of putt-putt this afternoon with some friends.

We kept Miss Julia up late tonight to help her sleep in tomorrow. We have to be at the hospital at 11am. Her radiation begins at 1pm and she can't have anything to eat or drink after 7am. I debated waking her, but its unlikely she'd be hungry and then the day would be much longer. So instead we stayed up late and had lots of snacks. She happily obliged. She started with hard-boiled eggs and actually ate 4!! Then moved on to goldfish, sugar cookies, and crackers. Now she should sleep until its time to leave, hopefully :)
Tomorrow will be the first actual treatment in radiation. They said to expect it to take a while because of some additional xrays that have to be done. Please pray that the sedation goes smoothly again, that the radiation is precise and effective and that her sensitive areas are out of the radiation field (we don't know yet what was found on Friday).

Carter and I are feeling better and working hard to stay that way!

The Nicknames...

In case you're wondering...

I did a post last year about the title of our blog. Just click to see how the kids got their nicknames.

What Chemo Looks Like (Week 2)

Thought you might like to see what a day of chemo looks like for us. (It's not exactly the same for everyone, just her particular case.) We just finished Week 2 of a 25-week, 3 drug course.

We put on her emla numbing cream at home and seal it with Glad press n seal (great solution!). When we get to the 9th floor (pediatric oncology) and check in, they call her back to do basic vitals. Then we wait. They see a lot of kids each day, so you never know how long it will take, way too many variables in every case. Julia likes to watch TV and play with the toys. They have a great playroom attached to the clinic and art therapy always has lots of activities set up in the hall for kids who are interested. They welcome and cater to siblings, too so they can be a part of the process. Carter hopes to go with us next Thursday. Julia is very comfortable in the clinic which has been a huge blessing.
Then they call her back for treatment. Here's what one of Julia's chemo trays look like. The syringes are saline, zofran, and chemo drugs. The port is accessed using a large, short needle that goes through the skin and into the port. The access can be left in for a week if we need it daily (like she will for radiation), they just put gauze and tape over the top to protect it.Here's Karen, her sweet nurse who has been wonderful with us. She is very warm and motherly. God has created very special people to staff pediatric oncology clinics and you know it from the moment you meet them.  These nurses are angels on earth.
The total infusion only takes a few minutes. Then they take out the needle, put on a band-aid, and we're ready to go. She gets zofran in case she is nauseous, but so far has not gotten sick. The side effects are usually cumulative, so we are still enjoying the early stages. She doesn't have much of an appetite the first couple days, but overall seems to be feeling fine. Here she is after her bath last week, after a chemo day...

I've had people ask about our contact precautions now that we are into actual chemo and radiation. Basically this is what we are told to observe with her compromised immune system:

• Julia cannot be around anyone who has had a fever, cough, runny nose, rash, vomiting, or diarrhea in the past 48 hours.
• She cannot be around anyone with an underarm temperature of 100* or higher.
• She cannot be around anyone who has received any of the following vaccines in the past 3 weeks: MMR, varicella (chicken pox), OPV (oral polio), flumist (nasal vaccine)- or she can contract the disease because these are 'live' vaccines.
• Cannot attend crowded areas, playlands, nurseries, childcare settings, and other child-centered areas.

As you can see these require a certain degree of quarantine on our part. Especially now while this stomach virus is still wreaking havoc. This is the list they give you before telling you to try and lead a normal life for your child- a little difficult. Especially the vaccine part. Our lives are full of infants and 5 year olds who are getting these all the time. I feel like I need a flashing billboard on my head.

We are very thankful we are entering the summer season when the sick bugs are at a minimum. We hope to be able to see friends again, play at parks, go for walks, and maybe even swim- we'll see how she feels and how her body copes. (If her blood count levels drop too low, and she becomes neutropenic, then there is an even a stricter set of guidelines.) So for now we are thankful for each other and whatever days of spring sunshine we can get. We all talk about the days when we will play with our friends again and hopefully those days will come soon.

Welcome to Radiation

Well, it's been another very interesting day. I came home yesterday to a sick Carter and not feeling so well my self. I was fine all day with getting her chemo and meeting with radiation oncology, but having my other child sick was my tipping point for the day. I just ache to be there for him and haven't been able to and now he feels bad. Carter has his annual sinus infection. We totally saw this coming and he's been feeling understandably rotten the past few days, but when you've got one kid with cancer going to the hospital every day, getting the other to the pediatrician is well, pretty impossible, poor little guy :( I made him an appointment for late this afternoon so one more day and he'd get relief.

We arrived home from the hospital yesterday with quite a to-do list of meds, supplements, press n seal wrap, etc for today's adventures. By the time I finished I knew I needed to see a doctor. The kidney pain in my back was getting worse. (I know crazy irony isn't it?!) Turns out moms of chronically ill kids don't drink enough or use the bathroom enough- big surprise. Most hospital days don't even allow time for meal breaks. Crazy. Anyway, I called our dear friends to find a late urgent care in our area- there are none- bummer. Plan B: You know your true friends when they are willing to test your urine in their kitchen. You two rock in so many ways, but this truly takes the cake :) So, tests show time to get some medicine. Same awesome friends dropped off my culture at the doctor the next day. Thank you!! I'm now on cipro and hoping to feel better soon.

So this morning was hectic to say the least. Being at Brenners at 8am is no small feat. It all seemed so overwhelming. I had to wake both the kids one who needed to eat and one who couldn't eat. Carter was crying because he felt bad and I was leaving him, again. Julia was upset to learn she was going back to the hospital. We don't tell her at night because we don't want her upset at bedtime, but it breaks my heart to greet her in the morning and have her ask what we're doing today. I will cherish the days when I don't have to answer, 'going to the hospital'. At this point we are scheduled to go every day through the end of April.

I am also doing a lot of her prep meds at home now which makes getting ready a little more work. We were finally on the road, both of them crying and me on the phone with our various doctor's offices. After explaining our situation to the last one, I just lost it. This is just too much. Fortunately, I have no problem telling God that. I pray for strength and energy and endurance and peace and comfort, but I also tell Him when its enough and plead to lighten the burden. He wants us to bring it all to Him, the good, the bad, the sad, the mad- yes, yes, yes, and yes.

Carter was very happy to be dropped off at Annmarie's- finally a playdate with friends :) Seeing him happy made leaving much easier. When we arrived at Brenners God lifted a simple burden. Radiation patients are given a special access code at a private, FREE lot underneath the cancer center- so much easier than the deck and all the many elevators, with all the bags and stroller its a hike. Its the little things that matter. Then we headed up to pediatric oncology to get her portacath accessed. The press n seal wrap worked like a charm and removal was so simple. Thanks God (and Glad). Then it was down to radiation oncology. Everyone there is above and beyond helpful and sweet. It really means a lot. They offered to push the stroller and carry our bags, so I could just hold her- another burden lifted. We went back into the treatment room do meet with Dr. McMullen (Dr. Hot Dog- though today it was a bow tie instead), the radiation therapy team, and the sedation team. They were all wonderful and had gifts for julia when we sat down. The sedation team was amazing. They said the violent response coming out of anesthesia is a problem they are seeing in many children lately (same drug they've always used, no one knows exactly why), but they've found a blood pressure medication that counteracts it once you find the right dose. So today would be our experiment.

They all left the room to help Julia stay calm, then they started the meds. It took a double dose of anesthesia to put her under, but she didn't fight it. This is the point when I lose it. There is just something about seeing your child sedated, holding their lifeless body in your arms, and then laying them on the table. I am so thankful they allow parents to participate, but it just rips my heart out every time. I also find I cry the most when she's sedated. I think it's the only time I feel she's not depending on me and I need to be strong for her and it all comes out. This morning was particularly rough because of everything going on. I just want a day without treatments, a day to just play with my kids. As I was sitting there praying I remember saying, 'God, 7 days of morning like this is a lot to handle.' And almost immediately, the nurse came out and said we didn't need to come on Monday until 11am... another burden lifted.

I also feel like as hard as it was for us to receive information and plans about her treatment in such a spread out and pieced together fashion, it really has made everything much easier for us to handle. I think God knows its too much to hear all at one time. I am amazed at how comfortable we are with all of this in only a few short weeks- truly the grace of God at work. And it is a tremendous blessing to have His peace about each step of the process when it comes time to sign all the many consent forms.

The sedation team and radiologists were wonderful. They came out every 5 minutes to give me updates. She did wonderfully through all of it. The drug cocktail worked! Thank you God and thank you all for praying... another huge burden lifted. They were finished around lunchtime. They had me come in when she was waking up and take her out with me. Within 15 minutes she was ready to go home feeling calm and happy (though still slightly limp and sedate), so much better then the last time- a complete turnaround... another huge burden lifted. Here's her new radiation tattoos for precise positioning each time. (You can see how well her scar is healing, too.)
We were ready to leave the hospital and the sweet tech pushed our stroller and bags all the way to the car for us so I could carry Julia... another blessing. We left feeling much more encouraged then when we arrived. Julia was peacefully reclined in her car seat watching Little Einsteins and the sun was shining on a glorious spring day. It's so sweet to hear her in the hospital she always asks people, 'Where did spring go?' It's been so long since she played outside that she worries its left. She takes special notice whenever we're outside of the sky, clouds, flowers, trees, and birds.
When we picked up Carter he was happily riding his bike with Lily and Julia finally got to play with Claire... another prayer answered. We had a very calm afternoon with friends. It has been so long since we've been around anyone. After a few more appts this afternoon, we are all on medication now (our house is looking more like a CVS everyday!) and hoping for a healing, restful, and joyful weekend.
Her radiation simulation went well. We were not given any more details. They are still in the information gathering stages. We'll know more next week. Thank you all for your devoted prayers. They mean so much to all of us and truly carry us through our days, especially mornings like today.

The Difference a Day Makes (Week 2)

Well, I am thanking God for the joyfulness and simplicity of yesterday because today was far from it. Everything went smoothly, its all just a whole lot more complicated than we had planned. We were at the hospital for five hours today...

We met with Dr. Wofford (the oncologist) and she was wonderful. I have to tell you Julia calls her "Dr. Waffle" and either works for her :) She went through all the study information with us in extreme detail. I mean detail. We started with the 1950s treatment of Wilms' and worked our decade by decade to the present day. I really admire the fact the she respects our intellect and treats us in the manner she does. She and I both refer to studies we've read and research we've done and actually benefit from each other. Its a rapport that I value.

Anyway, as we've said before Julia had a Stage 1, Favorable Histology tumor. In Wilms terms that's like a home run- surgery, 2 chemo drugs, cured. Julia fits this category except for the presence of focal (meaning contained, not everywhere) anaplasia cells which for all intents and purposes bumps you into a whole different camp regardless of stage. There are 400 kids per year diagnosed with Wilms' and around 5% are anaplastic (that's us).  Her tumor was also very unusual and covered in bumps and cysts.

The COG board, the Brenners' Tumor Board, and the Brenners' oncology team have all agreed we need to do the Regimen DD-4A (vincristine, dactinomycin, doxirubicin, and flank radiation). This recommendation is based on the most recent Wilms' tumor study of anaplasia cases NWTS-5 (2006), called 'Nitwits 5' for short (authored by Dr. Dome in DC). Unfortunately, the Focal Anaplasia study only had 9 children with stage 1 Focal Anaplasia (it is very unusual to catch it this early- again we're in the minority) and of those who were given only the 2 chemo drugs, 3 had recurrences and 2 others died. Those are not good percentages (5 out of 9). The current overall survival rates for Stage 1 Focal Anaplasia kids is actually lower than that of stage 2/3 Focal Anaplasia kids- the difference? ...Stage 2 and above cases always receive the higher level of treatment. When Stage 1 Anaplasia was treated with the DD-4A protocol these numbers are not the case.

So essentially it is the best medicine we know at this time and it is proven to work in even advanced stage Wilms' cases. We do not want a recurrence of this disease that would mean starting all over with 3 additional chemo drugs and radiation. We want to take care of this the first time. She will only receive 4 doses, low concentration of the more powerful chemo drug and the radiation will be 1100 units which is the lowest dose used in radiation oncology therapy.

So we agreed this would be our plan of attack and went ahead with this weeks chemo- only one drug this week. (The doxirubicin comes into play in 2 weeks.) Julia did well. She handles it all like its so commonplace. They used a smaller patch this week so there was less to peel off, but she still didn't like it. The doctor had a solution which made me laugh. Next week we will apply the emla at home and instead use Glad press n seal wrap- who knew?! I think this will go over much better. After chemo we were sent to the Cancer Center at Baptist to meet with the radiation oncologist. I've decided I like to stay in our tower at the hospital. Things get so much more complicated when you are sent to other towers. Yet another way our perspective changes- we are happy to just stay in pediatric oncology- never thought I'd say that.

We waited several hours and met with Dr. Kevin McMullen. His staff were all great and worked well with Julia. I have to say meeting him was interesting. He's a dynamic, warm, bald man who wears a giant hot dog on his head. He was very thorough and did a great job going over everything with us. He's obviously very experienced and has actually been studying Julia's case ever since we were diagnosed. (He said he had passed us earlier in the day in the other hospital and still remembered Julia- a really sweet guy.) Anyway, he thinks this is definitely something we need to do. Anaplasia is nothing to fool around with and in this case we know how to treat it. This is one of the highly curable childrens' cancers and we all want to cure it- the first time. He said it is assumed that when Wilms' tumors recur after treatment they were likely anaplastic and it wasn't found in pathology. Pathology actually uses tiny slivers of the tumor to look at under the micrscope- not the entire tumor, so again we are thankful to God that her small patch of anaplasia was even found in the first place. He assured us again that this is a very small dose of radiation therefore it will be unlikely to have any side effects.

So that being said we go back to Brenners tomorrow. She has to be in pediatric oncology at 8am to have her port accessed then she will go to radiation oncology at 9am to have her workup done were they measure, size, mark, etc.- a dry run. She will be sedated for this because it takes a while and needs absolute precision. Please pray about her sedation. Her last experience was not good. They are going to look in to different types of sedation as well as adding a blood pressure drug before that is supposed to counteract negative effects. All of this should take about 2 hours. Once she is set we will go back for seven days for seven treatments. He does not expect many long term effects from the radiation. They will begin her routine cancer screenings sooner than the typical adult, but that applies to being a cancer survivor anyway. He did say the field of radiation used is a predetermined area on her left side. They cannot make adjustments to this. So please if you could- pray that her breast tissues and ovary do not fall into this field because if they do, nothing can be done to prevent damage. It just depends on her unique (God-given) physiology.

And that's about it for now. Plenty we think. Please pray as we enter this new phase of treatment. We have peace about our decision and everything that happened today. We are very comfortable with Dr. Waffle and Dr. Hot Dog. Please pray for Carter, too. He is really feeling the effects of all of this, misses his friends, and is trying to figure out what to think of it all. He really wanted to come with us today, which is actually recommended, but not on days you conference with doctors. We told him he could come next time, thinking that would be next Thursday, not knowing we were going to have to go everyday in between. I'm taking her to radiation myself and having to deal with sedation, so he will have to wait until next week. I know this isn't going to go over well. A huge thanks to Carol who has taken been spending her spring break days with him. We are so appreciative- you were a lifesaver!!

A Sense of Normal

Today has been a great day.

• We went to see the doctor- at his office, not the hospital- like normal people do.
• We did our schoolwork together upstairs.
• I am typing this to the sound of clanging play dishes, clicking play shoes, and little pretending voices. They have not played together in longer than I can remember.
• The TVs in our house have been off all day! This has been Julia's primary recovery and pain comfort and she doesn't need it today! I thought I'd be sick of Little Einsteins by now, but I actually like it and find the theme song oddly comforting because it has helped her so much. It is her 'happy place'. But thankfully it can rest today.
• My kids are making get well cards for others, instead of always receiving them. Wow.
• There are games of baseball being played in our living room. It is April after all.
• I couldn't figure out why the floors were such a mess. It honestly did not occur to me that I used to vacuum them every other day. Needless to say, it's been a while. I felt like a normal person.... vacuuming :)
  
• My house is a mess of toys and you can't see the floor because my kids were playing today :)
• Julia is napping and I am cuddling on the couch with Carter just like we used to do every afternoon.

Tomorrow's a new day and more chemo, but for today, we're relishing in the normal :)


(There are lots of new posts and pictures in the entries below, so keep reading down through Easter... )