LAST CHEMO!!!! (Week 26)

Today was a big day for us- Julia's last chemo treatment!  This journey that began almost seven months ago has hit another milestone.  We started celebrating yesterday.  I hesitate to say this is the end because there is still other legs to this journey and we still haven't had end-of-treatment scans.  But the more I thought about it, we cannot let this day go by without celebrating Julia's brave battle.  She deserves to celebrate every major step along the way.  So we did. 

Julia's appetite has been good the past few days (as usually happens at the end of every 3 week break), so we wanted to enjoy it while we could.  She and Daddy made cupcakes while Carter and I were at church and we had a yummy picnic lunch on Sunday.  The weather was absolutely gorgeous! Then we went to our favorite Japanese restaurant for dinner.  Julia devoured 4 bowls of soup and an entire steak filet.  It was definitely worth the trip!

Last night we made thank you cards for our doctors and nurses.  It was such an emotional experience.  We will still be in clinic every month for another year and then several times a year after that, but I wanted to thank them for all they do for us.  It never ceases to inspire me how well they handle everything they face.  They deliver cancer diagnoses to parents on a regular basis.  They inject kids with toxic medication on a daily basis.  They perform painful procedures regularly.  They see children truly suffering.  It takes a very special person to work in pediatric oncology and these people are angels to everyone they encounter.  They lose dear patients every single year.  I look at Nurse Nancy who has been doing this for over 35 years and just get tears in my eyes- wow.  Only by the grace of God.

This morning was a blur of activity.  Of course the one morning we have to be somewhere, everyone in the house sleeps in.  Carter gets up faithfully at 7:15am every morning, except today.  We dropped of Carter and made it to Brenner's- not too late.  It was oddly quiet.  With the flu outbreaks, they have restricted the entire hospital to no one under 18, except patients.  We got out of the elevators and the Arts for Life tables were gone.  Everything has been moved into the confines of the clinic now.

We checked in, went through triage and they called her back for port access, labs, and physical.  Everyone loved her purple hat today.  She and baby Mia dressed to match.

As soon as Ms. Diane walked in the room she said, "This part is really tough, isn't it?" She read my mind.

In the beginning chemo was such an unknown and fear for all of us.  It has been difficult, but it has become what we know.  It's been our new normal for almost seven months.  She summed it up well when she said, "While you're in treatment you feel like you are doing something.  The active drugs keep the cancer in check.  When you stop, it all becomes a waiting game and a risk."  We are taking another huge leap of faith and we can't see the next step in the staircase.  We trust where God is taking us, but we are dependent upon God's new grace for this phase of life and adjusting to another new normal.

We talked for awhile about the upcoming appointment schedule and scan options.  Protocol is a CT scan at this point to check for any spreading cancer or new tumor growth.  The oncologists are very cautious with their use of CT because of the intense radiation.  It gives them an excellent picture of everything in the body, but at the cost of high dose radiation.  One CT is the equivalent of 600 chest x-rays.  So we are going back to the previous plan of chest x-rays and chest/abdomen/pelvic ultrasound.  Everyone signed off on this after much discussion again.  I really don't like these decisions.  I so appreciate them being so careful, but I still hate these heavy decisions.  So we will return on October 29th for port flush, labs, chest x-rays, ultrasounds, and an echocardiogram to check on her heart function (from the chemo side effects).  She will be NPO so in the event anyone sees anything concerning she could be immediately sedated for CT.  It will be a full day.

The waiting is one of the hardest parts.  As much as I want to rejoice and celebrate the end, A part of me holds back.  I've thought about this a lot lately.  I have faith that her treatment has worked and am still so thankful it was found SO early.  We are truly blessed.  But I know how cancer works.  I know what anaplasia cells are capable of and have seen them rally back too may times- months later, a year later, two years later.  I feel like I have to prepare myself in my head.  I have explored all the options in my mind and had those conversations.  Ones I pray never to hear said out loud I had to say in my mind.  I think moms, especially, do this often.  We have to be prepared for whatever lies ahead and able to be strong for our children whatever happens.

Today was the first time Ms. Diane really expressed her concerns about anaplasia.  She has always been so upbeat and optimistic throughout treatment.  Today you could hear the doubts in her voice and the sentences that trailed off.  There just aren't any clean, complete answers.  We talked about her portacath, too.  They are usually left in place for at least a year.  Some kids go crazy with every port flush, so they sometimes take them out earlier in those cases.  In Julia's case, they want to leave it in at least a year.

Cancer is just so messy.  There is no finish line.  It is like a bag that stays with us.  We are starting to zip it up now, but we still must carry it with us.  In time we will adapt and even forget it's there sometimes, but it will always be.  The biggest blessing is that if we let Him, God will carry the load for us and hold our hands if we ever have to open the bag again in the future.  What an amazing gift.

We also talked about 'single kidney health' and how to manage for the rest of her life.  There are routine labs that will be checked, no contact sports or bike stunts, aggressive treatment of UTIs, pre-screenings for kidney function, lots of water consumption, limited use of pain relievers, caution with prescriptions, and no seatbelts across the waist- ever.  She goes back to the urologist on October 30th for follow up. 

Then it was time to wait for her labs to come back. We headed out to paint with Michelle and one of the other patients, sweet Lily. Her mom and I had a wonderful conversation about older siblings of cancer patients.  Her other daughter is 8 and it was great to share our ideas, concerns, and experiences.  In no time at all Ms. Diane brought out Lily's labs.  No transfusion today- YAY Lily! Then she handed us Julia's too.  This is the fastest we have ever gotten labs.  The usual wait time is close to 2 hours and today was under 30 minutes.  No one could believe it.

Her labs look good.  Her ANC has only dropped to 912 and her red blood counts are holding strong.  Nurse Tammy gave her her final chemo- zofran, vincristine, and dactinomycin.  It was all very surreal.  We said one last prayer for these 'drugs on a mission' and we were ready to go.  I couldn't believe we were out so fast.  Today was our shortest clinic visit ever- under 2 hours! It was time to go home already.  We handed out our cards and lots of hugs (and tears).

So now we have another couple weeks of feeling lousy from today's chemo.  She will have her labs checked next Thursday and then we head back to the hospital on the 29th- barring any fevers in between.  Carter is fighting off a cough and fever tonight, so hopefully we can protect her.  As long as she has a port, fevers will mean a trip to the hospital.  It takes several months for their bodies to recover from chemo and their lab counts to start to return to normal.  So until that happens, her immune system will still be compromised.

Chemo Monday (Week 23)

We were back at the hospital Monday for chemo.  Julia was not upset today which always makes things easier for all of us.  It was a long morning at the clinic.  It's funny what seems normal to us now.  Our perception of a doctor's appointment has drastically changed.  A typical oncology clinic appointment is 4-8 hours and it really doesn't feel that long, though lunch is not built in for patients and you can't leave or eat in the clinic, so you get really hungry by the end. 

The lab was really slow today and everything they do here hinges on those numbers.  Sadly Ms. Michelle is sick, so no Art for Life today.  (Good news: Ms. Betsy had a healthy baby girl!)  It really drove home how important their volunteer service is to these kids.  There were some long faces around the waiting room and the kids didn't know what to do with themselves.  The playroom is only open for two hours in the mornings and Ms. Stacy did a good job thinking on her feet to fill the gap.

We made some new friends today.  It is amazing how easily you get to know people here and how your conversation goes from "hello, what's your child's name?" to the details of their last surgery and chemo side effects.  Cancer is definitely the great leveler.  The clinic has patients from dozens of racial backgrounds, languages, and socioeconomic groups and we're all in this together.

Julia's physical went well.  She bounced right back from last week's fever and everything looks good.  We talked a lot about end of treatment protocol.  I can't believe we're that close! After chemo ends we will wait 3 weeks, then she will have her chest xrays, ultrasounds, and echo of her heart.  At that point if all is clear we move to monthly clinic visits for port flush and labs for the next year.  If she is still clear then she would have the port removal surgery.  Then clinic every 3 months for a year, then every 6 months for a year, then every year.  I'm not sure what the future scan schedule looks like, but it will fit into those appointments.  Next time we will also talk about the plan for 'one kidney health' which is vital to Julia now.

We've been given the go ahead for flu shots.  They want us all to have them, mostly for Julia's protection.  We were also told she cannot be around anyone who received Flumist because of potential viral transmission.  Several local schools have been mass innoculating with the mist. She said this is a nightmare for them because their chemo kids are in these classrooms surrounded by the flu virus- yikes! Lymphoma and leukemia patients are in treatment for 2-3 years, so school attendance is a part of life for many.

Her counts came back stable.  Her white blood count is 3000 and her ANC was 1230.  Red blood count is still low, but not too bad.  So she got the go ahead for chemo.  Today is her last round of doxirubicin! Yipee! This is our love/hate drug.  We hate what it does to her body and the potential permanent damage it is causing to her heart (they will check every 2 years for the rest of her life).  This is the drug we were so hesitant about in the beginning.  But it is also the drug that we pray is saving her life and preventing those nasty anaplasia cells from spreading anywhere else.  It works by preventing DNA from forming, therefore the cancer cells would not multiply.  As much as I hated it in the beginning I have learned to view it as our safety net and our best chance for long term health.  As hard as it was to find out we had to step up from the simple treatment plan to this one (with doxirubicin and radiation), it is nothing compared to the next step in Wilms' treatment which has intense and devastating health effects.  What often times seems overwhelming at the moment, turns out to be less devastating than the alternative.

They did Julia's syringe chemo drugs, then hooked her up to the pump.  She likes to watch the red stuff as it makes its way down.  They wrapped all the patients in heated blankets because the A/C was so cold... 

Here it comes...

 

When the blankets weren't cutting it, they passed out hats.  Here's Julia's! She loves it and had to go show it to her fish friends...

 

Bye Rainbow Puppy, see you next time...

 

...for our LAST CHEMO!!!!

I never thought much about these clinic appointment cards, but if you read the plan options- admit, chemo, lumbar puncture, bone marrow, sedation, etc.- this is heavy stuff.  These brave kids never get less than a port access or IV- (that's an easy day!) and they're all still smiling the best they can.

Julia was really tired the rest of the day.  She took a long nap and didn't do much, besides eat Monday night.

 

She slept well and is bonding with the bed today.  We pray the medicine is doing its job in there and that she rides out these last two rounds well.  We go in for labs (and flu shots) next Thursday.

Now the rest of us are off to get some school work done, hopefully...

Chemo Monday (Week 20)

Monday we headed back to Brenners- Carter in tow- expecting just a physical since her counts are so low. Her ANC was 360 last week and needs to be 750 to get chemo. She was fine with going today and didn't get upset.
We were very excited today to be taking a huge donation for the birthday closet. Our sweet homeschooling friend Jenna is an Usborne book consultant. God put it on her heart to help brighten the days of kids at the oncology clinic and she came up with the idea for a summer reading drive. She had 6 families of children read books for 2 weeks and raise pledges. Those children raised over $1600- amazing! We then chose kid kits from the Usborne site for boys and girls of all ages- dinosaurs, trains, jewelry, science, music, etc.- dozens of them!!
The kids were so happy to be the 'delivery men' of such an exciting gift. The nurses were thrilled to stock the new goodies :) Thank you to all who played a part in making it happen. you will put a smile on the face of a very deserving child :)

Ms. Michelle was there today to help with Arts for Life. I love that they include the siblings in everything they do. Often times the patients don't even get a chance to participate, but their siblings do which gives them a creative outlet, something fun to do, and other people in their situation to talk with. Everyone in the clinic goes out of their way to include siblings in the process of cancer treatment. They also have extensive sibling support groups and activities for older children. It really is an important part of the process.

They checked us in and did Julia's vitals (Carter's too- just to be sweet.). She has actually gained 2lbs and is now 32lbs! (Carter is holding at 40lbs, but has grown to 44 inches.) Then they did her physical, put in her port access, and drew labs. Here she is holding her 'tubie'- as everyone calls it- attached to her port access...
We waited for a little over an hour for her labs to come back. The kids had fun in the playroom playing board games and playdoh. Then the nurse came out to say her labs were back, but they were conferencing on the results. It turns out her ANC has made a huge jump- YAY! and has come up to 759! We were very excited to be out of the danger zone. However she is now only 9 pts from the line, so they had to decide whether to proceed or not. The decision was made to go ahead. She received dactinomycin and vincristine today.

As we were leaving Colin was setting up music class in the lobby. We love Colin and the gift he has for brightening these children's lives. Here's their impromptu band jammin away. It was really sweet to watch and he is so encouraging of each one of them.
If you have the chance, please say a prayer for the teenage boy in the baseball cap. I don't know his name, but God does. He is in the throws of chemo treatment right now and having horrible side effects- has barely any voice left, has to use a walker, continues to lose weight and is now down to 85lbs. He was the most gentle, loving, and generous kid. He touched my heart in the brief time we were with him and I know he could use some prayers.

It was a long day, but we are happy to be finished with another treatment. Julia came home and napped and was feeling good last night. Carter took her for a spin in the truck to make her happy. He's such a sweet brother...

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Today has been rough. Julia slept well last night, but woke up this morning throwing up. She threw up every medicine I tried to give her and finally kept down the second dose of zofran which helped. She hasn't wanted to eat for the past two days and is just feeling crummy. She has been crying and yelling most of the day. We were all very happy when she took a 4 hour nap this afternoon. I am happy to say she ate some noodles for dinner and is now outside playing with Daddy and Carter. Hopefully the worst is over for this round and she starts feeling better soon.

They will check her counts again next Thursday. She is scheduled to go back for chemo on September 14th and will also have an echo, chest xrays, and ultrasounds to see if the cancer has returned anywhere else and to check for heart damage from the doxirubicin. This is by far one of the hardest parts of all of this. It is the thing you can't get away from. It is here for life and we must find a way to live with it. It feels like a leash that holds us all down. And it never goes away.

I am so thankful we caught her cancer as early as we did, especially because it is the aggressive form. I am so thankful for a successful surgery. There are many other children whose tumors cannot be removed for a variety of reasons. I am so thankful for how well she is handling treatment.

But it is the lingering uncertainty that eats away bit by bit. Most of the time I don't even realize it. It usually hits in waves for a night and then subsides for several weeks.

The Wilms' community is rather small (thankfully) and there are many support networks for encouragement and information. These have been a huge blessing to us. But at the same time these children become a part of you- their families, their stories, their illness, their lives, their sweet faces. There are so many cases where the cancer returned a year later or three years later and the the ante is raised- more surgery, heavy chemo, radiation- and so many children lose their battles. I try not to dwell on the loss, but at the same time these children become a part of you. They are young children, just like mine and they should never be forgotten- just because its hard for us still here to remember. If it were my child, I wouldn't want people to look away, just because it hurts.

So please pray for clean scans next time and peace in our hearts as we learn to live in this cancer world we are forever a part of.

Chemo Monday (Week 17)

It is hard to believe another new month has started. August marks our fifth month in the chemo clinic and in many ways it seems we've been here for much longer, hard to believe. Julia and I have been talking, reading, and 'playing' about her chemo this weekend. She hasn't revealed anything especially surprising, but I think she is feeling more empowered in the situation and in control of her life.

When she got up this morning I put the emla and Glad wrap on her port and the tears started. Things were not looking good. She breaks into the most pitiful cry- 'hold me Mommy" It breaks my heart. We kept going and she was happy to squeeze in a quick game with Daddy before he left for a business trip. We headed off to Brenner's with the Little Einsteins' movie playing. Julia tried one last time as she climbed into the stroller, "How about you go in and I'll just wait in the car?" Doesn't hurt to ask right? She resolved herself to my answer and announced she was pushing the elevator buttons.

When we got up to the floor, she was happy to see Ms. Betsy and actually said she would stay at the art table while I went into the clinic to register. She's growing up.
One of the Arts for Life interns (Michelle) worked with her today. By the time I came out she had drawn her own giraffe, with just verbal direction. Pretty amazing for a 3yr old!
Soon Shea was calling us back for triage. Julia knows the drill by heart now, step by step. It's funny that at a regular pediatrician's office height and weight are to see how much they've grown. Here that's just an afterthought. They measure to see how much poison to give.
Sorry to sound so negative but its true. There is a constant hum in the clinic of 'meters squared, kilos, milliliters, dose limits...' If you listen, you hear it- every doctor, nurse, med student, and intern. They're always calculating, conferencing, and recalculating- walking the delicate line between helping and hurting- the line that's always moving. I don't know if it's reassuring that they are being so careful and consulting so many minds on each and every decision or disconcerting because there are so many variables at play.

We enjoyed playing in the playroom. the big tub of blocks was calling her name. Here's the house she built for her people...
Then Ms. Stacy broke out some brand new playdoh. Julia has been on a playdoh kick all weekend and was very excited. She's just like her mother- the thrill of new school supplies :) Her favorite activity these days is cutting off the hair- so symbolic and empowering for her...
Ms. Karen called her back for port access and I was sure she was going to resist, but she amazed me. She asked what was happening and wanted to help, but didn't get upset. She was back to being Ms. Karen's little helper.

Then Ms. Dianne came in for her physical. For the first time Julia did it by herself, with me on the other side of the room...
Everything checked out well. They want her to continue with the Miralax and pain medicine as needed. We also talked about pneumocystis pneumonia (PCP). Cancer and HIV patients are at a high risk for PCP because of their weakened immune systems. This disease is caused by a fungus present in the lungs of almost everyone, but our bodies keep it in check. Typically chemo patients are put on prophylactic bactrim. Julia was already taking bactrim the first month of chemo because of UTIs. When the urologist canceled her orders for prophylaxis, oncology debated whether or not to pick back up. The initial decision was no, but today they changed it to yes. God has protected her so far, and we intend to keep her that way. So now she will take 3 days of bactrim every week.

We also talked about the flu. They are very impressed that she did not contract H1N1 from Carter 3 weeks ago. I guess we know something about quarantine and did it somewhat effectively. She said we will all be given flu vaccines as soon as the clinic gets their supply. They have a special infectious disease team that determines the plan for these type situations. I was curious what would happen with Julia's. She said they vaccinate chemo patients in hopes it makes a small dent. It is unclear whether their immune systems are able to do anything with it, but they still try.

We went back out to paint while we waited for her labs to come back.
Things came back pretty normal for Julia. Her white blood count is back in the 2's where it's been through most of this. She is back to being neutropenic- our brief break is over. Her red blood count is holding in the normal range. They decided to go ahead.

Julia has been riding the car all over the clinic this morning. Ms. Karen was so sweet to do her treatment on the car. Did you know they have drive thru chemo?  :) She received her vincristine, zofran, and they hooked up the doxirubicin pump...

This moment really struck me this morning. It is says so much...
This cancer is so much bigger than her. (Thankfully our God is much bigger than cancer.) It also shows the burden she can't escape. As a kid she wants to run and play freely, and she should- but she remains tied to and controlled by the cancer right now.

But it also shows our little David facing her Goliath head on with strength and grace.

One more bag down...
...only a handful more to go.

Julia is resting well right now. She hasn't had much of an appetite, but she's hanging in there. Sleep well my sweet girl, sweet dreams, God bless you!

Chemo Monday (Week 14)

Our last night in DC, Carter started feeling sick. He has a fever and is very lethargic.

Coming on this trip was a calculated risk for us. But a risk that we and our doctors decided was necessary and worthwhile. We have enjoyed our time away immensely. It has been a blessing to see so many of our friends and family- some we haven't seen in a long time. It was good for all of us. It was great to see so many of the people out there following our story and praying for us on a daily basis. Some we have met before, others we saw for the first time. It is humbling to know that so many people are interceding on our behalf. I pray God blesses each and every one of you and your families. Thank you for holding us up!

But now we are suffering the consequences of breaking out of our bubble. I took Carter to the ER when we got home Sunday night. They took him right back and took full precautions. After a full work up they told us he had a virus, possibly flu. They sent us home with Tamiflu and instructions on quarantine for our household. "No contact between the kids. Everyone wearing masks and gloves. Complete cleaning and disinfecting when moving from one child to the next. etc." After they read me the list, they smiled and said it would be really difficult, near impossible, to do with preschoolers. No kidding!
So we're back where we started this whole process. Just abiding. God is in control of this, too. No amount of control or worry is going to change it, so we have to just accept it. I have to say it is almost surreal. I came home to mountains of luggage, one sick child, and one extremely vulnerable child. When it was just our family and we were all healthy I felt safe in our house. Now that has been invaded, too. We had a few moments of 'what now?!" then we just moved on. We have to just do our best for each of the kids and trust that God has all of us in His grasp.

Carter rarely if ever tells us if he doesn't feel well. But it is very easy to tell because the child that never stops moving is stopped in his tracks. He actually fell asleep Sunday afternoon. His only symptoms so far are lethargy and fever. We pray he doesn't get worse.
We have been keeping him confined to one chair in the living room and his bedroom. Billy and I will likely wash the skin off our hands and arms sometime in the near future :) and Lysol is our new best friend.

So that's where we were going into chemo today.

It feels like such a long time since we came to the hospital. Julia was happy to see everyone again and them her. She was painting in no time and driving the firetruck all over the clinic.
We were glad to have Ms. Karen back as our nurse today, though Ms. Diane stopped in to catch up. Julia had her physical with Dr. McLean before treatment. He was happy with her progress and the positive effects of the blood transfusion. She has had mostly good days. The past week she has had a lot of jaw pain and achiness, but overall has done well. Her labs today looked good. Her white blood count has come up from 1.9 to 3.7 just since the end of June! And her red blood count levels are all holding strong. Praise God!

Today she received vincristine, dactinomycin, and zofran. This week is her first of four high doses of vincristine. Because of her age jump and the higher dose she is actually receiving double the dose strength she started with. Dr. McLean spent a lot of time talking to me about this. They expect her pain to increase steadily. He said not to be surprised if it prevents her from eating and limits her ability to walk in the next weeks. The dactinomycin will also likely make her nauseous.

She cried today for the first time during treatment. When Ms. Karen started her port access, she lost it. I hate having to force her to do this. She said having the access pushed in really hurts. This is the first time she has ever talked about how all this feels. My heart aches for her having to go through this process. Julia, you are my hero.

Please pray for strength for Julia and minimal side effects. Please pray for Carter's quick healing and protection for all of us from illness. Also for strength, encouragement, and faith for all of us during the next weeks recovering at home. Thank you for your continued love and prayers during this long journey...

Oncology Update

The oncologist called this evening after reviewing Julia's weekly labs...

They are happy with the progress from her blood transfusion. Her red blood cell levels look good. Her white blood counts are holding around the same. They are not concerned about the high lymphocyte number. It is a percentage of the concentration in her total white blood count. Because she is neutropenic, her neutrophils are very low, therefore the other percentages have to increase in order to make up the difference in the total value.

Her ANC has gone down to 640 (500 is the 'danger zone', 1000 is 'free to participate in any activity without precautions'). We still have the go ahead to travel, but they want us to be very careful, limit her contact, disinfect surfaces, and avoid everyone who has been or is ill, or recently vaccinated. Please pray for protection from illness for all of us, especially these next two weeks.

Chemo Monday (Week 10)

We were back at the hospital at 9am this morning. Julia couldn't eat or drink, but never even asked. It is totally God that she handles that so well. Any other morning breakfast is the first thing she asks for downstairs, but somehow she just knows. We've become old pros at this whole process. We put on her emla and Glad wrap. She said, 'Mommy, you're really good at that lotion." We've got our hospital backpack always packed and ready. The drive is so familiar now. We know to park on the purple deck for the easiest walk to the hospital. And we're headed up. She's always excited if the elevator is empty and she gets to push the buttons...

After triage, Dr. Wofford came in to do her exam. She was pleased with how well Julia was doing. Her easier week this week lets them know her body is tolerating the higher doses of vincristine and adjusting. We talked about her scheduled scans. She said the current research shows no significant differnces in x-ray and ultrasound versus CT. The CT comes with substantial radiation which they want to avoid whenever possible. I was so happy to hear this. Survival rates in pediatric cancer have gone from less than 30% to almost 80% in the past 30 years. Now that treatment regimens are established it seems they are spending more time on long term survivor research. Every discussion we have had since her diagnosis has included the future and the impact on her long term health. It is such a delicate balance attacking the cancer with enough aggression to prevent recurrence, but at the same time minimizing permanent damage and secondary cancers.

Julia was great for her chest xrays. She sat there on that box looking so stoic and small in her ladybug apron, holding her arms abover her head. They were surprised by how cooperative and compliant she was. That's JuJu, as long as you don't have to remove surgical tape, she doesn't say a word or make a sound. Then it was on to the ultrasound.

The tech came into the hallway to take us in. When I walked in the room, time stopped for a minute. This was the very same room we were in on March 25th, just 2 hours after the tumor was initially found. We where living in a whirlpool then with no idea where or when we would stop spinning. As I laid her on the bed and sat next to her I couldn't help but reflect on how far we have come. As life-changing as cancer is, it is such a part of us now. The tech asked me her diagnosis and I rattled it off the same way I would her name. She was great with Julia. She actually has 4 kids of her own, 6, 4, 3, & 1- whew!

The scan took about 45 min. They looked at her heart, lungs, stomach, intestines, spleen, 'empty' left side, right kidney, and bladder. Julia just laid quietly on the table. Sweet girl. Everything looked good. I don't know that all the doctor's have reviewed it and signed off yet, but so far no red flags. Praise God! I feel like this was our first checkpoint to cross and we made it.


Then we headed back up to the 9th floor to wait for her labs to come back to see if she was able to have today's chemo treatment. She finally was able to eat at lunchtime...
Then we painted with Betsy for awhile and headed into the playroom to play dollhouse and kitchen.

We did a lot of waiting today. It took about 2 hours for her labs to come back after lunch. We were the last patient left in the clinic.
They finally got the go ahead at 1pm for her infusion. Her white blood counts were 2000 today. Anything above 1000 and they proceed with chemo (Normal is 6000-14000). All her counts dropped this past week and she is still neutropenic, but nothing 'dangerously' low. The cumulative affects of the past 10 weeks have taken their toll. This is the reasoning behind the spacing of these remaining treatments. She has all her strongest drugs and doses left, but will only receive treatments every 3 weeks, to allow her body the best chance to recover in between.

They hooked her up to the IV pump and we cuddled on the couch for the next hour. Seeing this drug brings the realities of chemo to the surface. It has the telltale 'hawaiian punch' color that dyes their tears, sweat, and urine red. This is also the drug that caused her hair to fall out. This is the drug that can cause heart damage and future cancers. This is our 'insurance policy' against those nasty anaplasia cells. This is the drug we are learning to live with. Today was efinitely easier than the first time. Though as I lay with her on the couch, the nurse came to disconnect her and had to 'suit up'. The bag you see on top of the pump is all the gloves and disposal bags that have to be used by anyone who touches the bags, tubing, or patient. And we're running this into her heart?
She did great with everything. As the nurse was removing her port acess and putting on her bandaid, Julia said, "I just love this doctor's office." She makes them tear up every week! I must say though she will never look at any future doctor's office the same. Her first question will be, "What amenities and services do you provide?" and "How good is your ice cream?"
She was happy to be back home and had some play time with Allison. They were so cute! She wears her heels almost everywhere she goes these days. Even when she's a cat...
It's been a long day and we are all very tired. Julia especially...
So it's off to bed. We were actually all in bed before the sun went down tonight.

Sweet dreams!

Chemo Diet

The doctors have been intrigued that Julia has not struggled with constipation from her chemotherapy drugs. She is one of the only kids they have ever seen on vincristine without chronic constipation. They have been asking about her diet, so we decided to keep track. Don't know if it holds the secret or not, but it works for her.

She has 1-2 days a week when she doesn't eat much of anything. She has definite taste preferences from the meds and some days eats only one or 2 of these items all day long. She has had quite an appetite. Most days she's eating 6-8 small meals a day, sometimes more. We feed her whenever she's hungry and follow her lead if she doesn't want to eat. She hasn't lost any weight so far. Here's her list...

40-50oz water daily (she can't tolerate drinking anything else since chemo started)
Grape Nuts cereal
whole wheat toast
wheat waffles with maple syrup
Better Start Light english muffins with PB
crescent rolls
red peppers
raspberries
watermelon
blueberries
apples
mandarin oranges
Danimals yogurt drinks
Danactive yogurt drinks
Yoplait Gogurts (frozen)
corn
rice
Barilla Plus pasta
Campbell's kids' soups (low sodium)
pizza
hard-boiled eggs
steak (once a week)
PB Ritz Bits
Goldfish crackers
Super Pretzels
smoothies
vanilla ice cream

Daily supplements:
Centrum Kids vitamins
Calcium Gummy Bears
Coromega supplements
Primadophilus Children (probiotics), added to her water

Surprises Along the Way (Week 9)

We had a good trip to the hospital Monday. Julia was okay with going and didn't cry about the emla at all. We were excited to try out her new 'chemo shirt'. Annmarie found these tank tops at Target and Mimi cut the straps and added velcro closures, so at the hospital we only need to open the strap for treatment. They were a big hit. Ms. Diane said they would love to have those available to other patients. Kids who have been poked and prodded this much really hate having their clothes removed. So if you ever seen any shirts or sundresses that would work they would make great clinic donations. (We can modify them and add the velcro closures.)

While we were getting ready, Julia said, "Mommy, I need a bow today". Before this all started, that was part of our morning ritual- picking a bow from the ribbon hanger to match her outfit. Fortunately, Lara's bows work with little or no hair and Julia got to wear her bow :) She looked very sweet.

Ms. Betsy had a great project planned today. They made their own fishing games. Julia was quite skilled at catching these fish. It really impressed Nurse Diane. She said one of the things we needed to talk about was the effects on her fine motor skills- needless to say, none found- yay!
They are still watching her gait for the telltale 'chemo walk'. The meds can cause peripheral neuropathy and 'foot drop'. The common signs are walking on the toes and stumbling. This is really tough to identify in a 3 year old who stumbles and walks on their toes in a typical day. It can be an indicator of the meds being too strong, so we will continue to watch her and try to gently discourage the toe walking.

Her physical went well. Her side effects this week were as expected with the increase in her dosages last week. At this point her biggest trouble with vincristine is the aching (it causes jaw, back, and bone pain). She has been able to handle it so far, so we are going to wait on any more pain meds because of additional side effects. Sadly, single-kidney patients cannot take ibuprofen which would probably give her the most relief from the aches.

Ms. Diane left after her exam and came back in with her chemo tray. We were surprised to not see Ms. Karen. The nurses are now competing over who gets to give Julia her meds because she is so sweet and cooperative. Ms. Diane has found ways to assign Karen to other jobs, so that she can do it! We love them all and it is getting quite funny. I'm so proud of Julia for handling this all so well, but at the same time I still hate to see it all seem so normal to her. When I was putting her back in the car after the appointment, she said, 'Mommy I had lots of fun with you at the hospital today.' What kid says that after chemo?! God has filled her with cancer grace in an amazing way. She is truly amazing.

As we were wrapping up her appointment today they handed me her appointment card for next week and it had several additional items on it. It turns out next week she is scanned to check her progress. We had no idea this happened already. I know scans are now a part of her future indefinitely and she will be scanned at the end of chemo treatment, but today we found out there is also a scan at the end of the first 10 weeks. Because cancer cells are fast-growing and invasive, they need to check for any remaining tumors and also check to see if any cells spread to new locations in her body. Since she has the rare and aggressive form of Wilms' tumor (nephroblastoma)- focal anaplasia, they need to take extra precautions in her treatment.

It really shook me to hear this. Kind of like the feeling when you get knocked over in the ocean- you are on your feet again, but a little uneasy. I knew we would face this at some point, but didn't think it would be so soon in the process. So as you can imagine, our biggest prayer request now is for clear scans next week. The doctors on consulting about what kind of scans will be done. Most likely it will be a sedated CT scan, but we are waiting to hear from them. We pray that the right decision is made and that her scans are conclusive.

I also discovered a new organization while we were at the clinic today... Candlelighters Foundation:

Our mission is to provide information and awareness for children and adolescents with cancer and their families, to advocate for their needs, and to support research so every child survives and leads a long and healthy life.We are the largest publisher and distributor of free childhood cancer books in the country. We host the largest national childhood cancer awareness event each December holiday season. We represent childhood cancer on numerous cancer organizations and to members of Congress on Capitol Hill; and we support cutting edge research that leads to new and better treatments for our nation’s littlest cancer patients. As the largest childhood cancer grassroots organization in the country, we know first hand that "kids can't fight cancer alone!"

In addition to many other services, Candlelighters supplies many of the books available in the parents' resource library at the clinic. I found one today called Childhood Cancer: A Parent's Guide to Solid Tumor Cancer. (This includes neuroblastoma, nephroblastoma (Wilms' tumor), liver cancer, soft tissue sarcomas, bone sarcomas, and retinoblastoma.) I brought it home to look over and had a chance to read the first chapter before dinner. Two pages in and I was crying. It was exactly what we were living and feeling. It was written by two mothers who have been down this road with their own children. Their mission was to compile all the practical and medical information parents needed in one place as well as the resources and advice they would need. It is interspersed with the emotional experiences of over 100 parents, patients, and siblings. Every page rung so true. If you ever have the unfortunate experience of walking this road with your own child or someone you know, get them this book, (they are free!). I went to bed early last night and could not put it down. 465 pages later, I felt a mix of relief, empowerment, encouragement, sadness, and hope. Candleighters provides these guides for free and in my opinion it should be put in the hands of every family with cancer to read when they are ready. It is a part of the Patient-Center Guides series which includes many other conditions, too. They are wonderful.

This afternoon, Lara called to say she was bringing over a surprise for Julia. Lara has made all the bows Julia has ever worn and we are happy to say that hasn't changed. Today she brought over 3 new headband bows for her to wear. Thank you!! She loved them...

Julia has been doing well so far. She enjoyed playing with friends yesterday and today. It is truly the highlight of her days right now.

On a side note, I finally got back to the doctor to follow up on my CBC. When I was sick during Julia's radiation they found I had very low platelets in addition to a bad virus. (Ironically, page 3 of the Childhood Cancer book was the physical response of parents to a cancer diagnosis. Apparently this is very typical.) I am happy to report they are back to normal! Huge praise!! I am feeling good overall, but still adjusting to the thyroid replacement meds (from my thyroid removal for Graves' disease last November). My levels are in the low range of normal. I have an appointment on June 29th and will discuss with the doctor going up a little higher. It would really help to feel as normal as possible during all of this.

Thank you all for the continued love and support. The meals, prayers, emails, comments, babysitting, cards, gifts, and balloons we have received from all over the country are amazing and a loving testament to my children about the support of their Christian family. We love you guys!!

Chemo and Waffles (Week 8)

We were back at the hospital today, after I ended up driving in circles on the way there. I don't know what I was thinking, but apparently it wasn't about where I was going. Fortunately our 'out of the way' was also 'on the way' and we made it (not too late). Betsy had lots of fun art projects today. Julia made a butterfly to hang from her ceiling and a stand up house and tree.
We saw Ms. Diane (the chemo nurse guru, with like 12 initials after her name) for her physical today. Julia has had an excellent week and they are surprised how many of her side effects have eased as time goes on. Praise God for his grace in these trials and the prayers of so many. We are seeing the reality of God's protection despite our worldly understanding. My dear friend Lara said in an email after Julia's initial diagnosis that she prayed we would emerge from this fire and not be burned, not even smell like smoke (like Shadrach, Meshach, and Abednego) and Julia is a testament that that can happen!

We realized as we were talking today that Julia has crossed the threshold for her chemo med doses. I hated to bring it up, but on her treatment plan the doses are given for 1-3 yrs and 3yrs+. Julia has now crossed that line. They use an equation to compute dosing that has something to do with 'meters squared'. She and Dr. McLean 'pow-wowed' about it for awhile and decided she did indeed need a stronger dose. So today's meds went from 0.6 to 0.88. Ms. Diane said this is quite a jump (almost 50%) and was hoping for something incremental, but the doctor vetoed that. So our prayer is now that her body is prepared to handle these stronger doses. I felt I had to ask because I don't want to have any regrets or what-ifs when we reach the end of this process. We want to be confident that we did everything the best we knew how.

Ms. Diane was impressed with how well she does with the chemo process. She even helps hold all the vials and tubing in between steps. She told her she could pick a toy from the toy chest, but Julia said no thank you she just wanted a sticker. Diane told her she could have 3 and she said, "No, just one. Save the rest for the other kids." She has everyone of them wrapped around her finger.
Catching a quick bite to eat in the treatment room...

After two hours in the chemo clinic, we headed to radiation oncology for her follow up with Dr. McMullen. He was happy to see her and impressed with how well her body is handling everything. She never showed signs of skin burning and deterioration often seen with radiation. He said we need to watch her closely though because radiation causes 'cell suicide' which happens slowly and progressively over time. The side effects often occur much later. He also reiterated that she needs to have sunblock on that area at all times, everyday. We need to by stock in zinc oxide- anyone figured out how to grow it in the yard, yet?!

Then he reviewed her scan maps from her chart. They radiated her left flank. They avoided her right kidney. Her ovaries were definitely out of the field (good news!). The were able to radiate both halves of the spine to hopefully prevent any faulty growth and malalignment in the future. They were unable to tell for sure if they avoided all breast tissue- hard to determine in a toddler. She will begin preventative breast MRIs at age 25. He said we shouldn't need to see him again for now. They like to reduce the number of doctors seen whenever possible to not cause undue stress on the kids. If the oncologists see any concerns they will call him upstairs to consult. He was very thorough and easy to talk to. I really admire his approach and bedside manner. He is truly one of the best.

Here's the 'rock star look' Julia was sporting around the hospital today...

Today really made me think about what lies ahead for us and ultimately for her. Our preliminary information binder includes schedules in the back of biannual CT scans, MRIs, labs, etc. And as she gets older they add more screenings of her breasts, colon, etc. This never really ends.

We are in this weird place now. After the full-out crisis part ends, the real battle and work begins. This is the part no one has a name for and there are fuzzy expectations. Most days we feel we can handle the big things in life, its the little irritablities that leave us fumbling and overly emotional. I find myself caught off guard by my feelings at simple things and the daily stresses of life with preschoolers, a husband, and people in general. You hear people say that you have to take care of yourself first. But in reality, how do caregivers make regular time for themselves? You have the weight of the cancer you carry and all the little things of daily living, combined with the need to be ever-vigilant and attentive to the patient and their environment. In some ways living in the crisis mode is easier. This is so abstract. It all goes back to abiding in Christ and living in the moment with His strength. I do, but at times I just want to feel our old life again for just a day.

I miss our friends. I miss running around on errands and trips with the kids. I miss my brain without the thoughts of cancer. I miss a life that didn't revolve around chemo, appointments, temperatures, blood counts, and the next scan. I miss worrying at every ill feeling that I might be getting sick and become contagious. I miss my body without adrenalin and all the ways it changes your immune, circulatory, and digestive systems. I miss JuJu's curls and it makes me sad that I'm so used to her wispy baldness already. I miss going to the grocery store and planning meals. I miss life without germophobia. i miss our life before this isolation moved in. I miss simplicity. I miss spontanaiety.

I feel like I am mourning our past life, accepting our present state, and preparing myself for what comes after treatment. Right now we are battling this cancer. We are 8 weeks into 25 weeks of chemo which seems like a long time. But it will end. After September 28th we will enter the waiting period. After her treatment ends, we will wait 5 years to see if the cancer returns in her kidneys or has spread anywhere else. After 5 years, they will declare her cured and in remission. Five years is a long time.

As I mulled all this over today in the car on the ride home from the hospital, my brain was swirling with all these thoughts. Julia's DVD was over and we were almost home, so I turned on the radio. The song, Voice of Truth, by Casting Crowns was playing and I started to sing without thinking much about it. I love the way God uses songs and verses you've heard countless times before and opens your eyes and heart to a completely fresh meaning. That's what happened today with this song. As I sang the words from memory, God's truth sunk in deep...

Oh what I would do to have
The kind of strength it takes to stand before a giant
With just a sling and a stone
Surrounded by the sound of a thousand warriors
Shaking in their armor
Wishing they'd have had the strength to stand...

But the stone was just the right size
To put the giant on the ground
And the waves they don't seem so high
From on top of them looking down
I will soar with the wings of eagles
When I stop and listen to the sound of Jesus
Singing over me
I will choose to listen and believe the voice of truth

Cancer is the giant in our lives right now. We are facing an evil with a mind of its own. Seeing a child take on cancer is our modern day 'David and Goliath'. She doesn't need the world's armor, just the strength and protection of her God. When they changed her chemo dosage today, I hesitate for a moment about whether this was the right decision? should we have been using stronger doses sooner? what if? And hearing this song I said, no the stone was just the right size because God's timing is perfect and He is her Great Physician. The waves we are riding now and will for the coming years aren't so high when we soar on God's truth. I will choose to listen and believe. I will.

A huge praise...Matheson completed his chemo treatments today! YAY!!!! He is finished! This little David has fought his Giant. We pray that his battle is complete and he and his mom are able to return to their family soon. What a joyous homecoming that will be!

I rest in His Truth in a way I never have before in my life. We had a good night playing together. the kids have been getting along so well lately. I had time with just Carter while Julia napped and tonight after he was in bed, it was just us girls. (Billy is in PA working this week.) We played games, colored, cuddled, and of course ate waffles :) Sweet dreams JuJu, sleep well, and God bless...