The kids hunted for eggs filled with treats as well as a special dozen filled with a different kind of treasure.
We couldn't have asked for a better day- perfect weather, precious fellowship, and sweet playtime!
Wednesday, March 31, 2010
Resurrection Egg Hunt
We've been having fun enjoying the beauty of spring, the gorgeous weather, and the celebration of Easter week. One of the highlights this past week was a Resurrection Egg Hunt with some of our fellow homeschooling families. We have been so fortunate to know so many other families making this choice. This week we had the chance to get to know even more. Such a blessing!
The kids hunted for eggs filled with treats as well as a special dozen filled with a different kind of treasure.
After all the eggs were found, the kids gathered round to listen to Ms. Jenna share the Easter story. She used the resurrection eggs to help tell the story. Each egg contains a different item symbolic of Christ's last week. The kids listened intently and participated in the retelling.
We couldn't have asked for a better day- perfect weather, precious fellowship, and sweet playtime!
The kids hunted for eggs filled with treats as well as a special dozen filled with a different kind of treasure.
We couldn't have asked for a better day- perfect weather, precious fellowship, and sweet playtime!
Sunday, March 28, 2010
Looking Back
It's so hard to believe just a year ago, Julia had major surgery. It was by far one of the most trying days for all of us. She had been NPO since the night before and they woke us at 6am to prep her for surgery at 8am. The OR schedule had changed due to overnight cases and she wasn't actually taken back until 1:30pm. Our time together was sweet and she was playful and happy. We all doted on her, played games, and enjoyed the gift of time.
They took her from us to go back to the OR. She was peaceful and happy as ever. Handing her over with so many unknowns was a feeling I will never forget. As my heart and mind went into overdrive, I found myself in a constant state of prayer. Our time in the waiting room seemed to last for days. I had no real concept of time or place. I knew I should eat and sleep and rest. I just wanted to know she was okay.
The OR nurse called us every few hours with progress reports. It was actually one of her calls that confirmed the cancer, when she casually reported that her portacath was being installed. It all became sickeningly real in an instant. We all cried and prayed through our tears as we listened to David Crowder Band's Remedy CD. We had such a sweet time of worship in the midst of our pain, knowing that God had all of this in His plan. Everything is for His glory and He has already given us the Remedy for everything that happens in this world.
A few hours later, Dr. Pranikoff came out to take us back to see her. It was so late at night, the pediatric recovery dept was closed so he wound us through a maze of halls to the adult hospital.
I will never forget his tender words and understanding tone, mixed with giddy enthusiasm. He could not emphasize enough how nasty, irregular, and unusual the tumor was when he removed it. He could not believe how fortunate she was to have had it found by accident. We told him God showed it to us on purpose. He reminded us it likely saved her tremendous suffering and possibly her life. Because in the Wilms' world, this is considered a really small tumor! I know that seems so crazy. We recently learned that these tumors double in size about every 2 weeks, so you can only imagine where it was headed and the saving grace of God's divine intervention in Julia's life...
We felt so grateful and indebted to him. I know God is the one who gives him the skill and ability, but you can't help but feel appreciation for the person who made it happen. He removed and examined all the organs in her abdomen, removed the tumor without leaking any cancer cells, removed the left side of her urinary tract and lymph nodes, and avoided all her major arteries.
When she went in for her port removal surgery this past February, I found myself in the same waiting room again. This time I was alone with my thoughts. As I sat down I found I couldn't sit in the same place, the feelings were too raw. As I sat across from that couch I relived that day.
March 27, 2009...
...and this year..... March 27, 2010....
Thursday, March 25, 2010
The Day
It was one year ago today that time stood still for a moment and our lives were hurled down a completely new path. I had no idea that the words I had written the night before were a foreshadow of our life to come and the foundation that God had laid in my heart for a time such as this.
It is hard to believe a full year has gone by. I can still remember every detail of that day in vivid detail, as if it just happened yesterday. I remember every event, every thought, every feeling. It was like it was all happening in slow motion. As the world continued status quo around us, everything we knew was changed in an instant. God had ordained a path for us that we never imagined, but He was already going down it ahead of us. Every step would be in blind faith. We had no idea what to expect.
There are so many moments of the past year that have been life-changing for us...
The end of treatment in October and her first round of clear scans in January ushered us into a new world. It was a tough adjustment. Another cancer mom described it as being kicked out of the nest. When your child has cancer your schedule is not your own. As parents we are at the mercy of the doctors, hospitals and their plans. We wait to be told where to go and what to do. The idea of planning ahead or deciding when things will happen is a foreign concept. I laughed the other week at the peds office when I heard a parent arguing about when they could fit their child's next appointment into their schedule. In the cancer world we just nod and put the card in our bag. We are not in the driver's seat of our lives anymore.
When treatment ends you feel lost for awhile. The battle phase is over and now it is time to survey the battlefield and take stock of the situation. It was a slow process for us as we all adjusted to new roles, healed physically and emotionally, found a new rhythm, and started to rejoin the world as regular participants. When you are kicked out of the nest you suddenly discover you can't fly as gracefully as you may have before. There is healing that needs to happen before these wings can flap again. Outside the security of the nest and all the caring staff, it is an ambiguous place to be. Fighting cancer is an action. We hate to have to do it but as parents we like action. Now we are in the hoping all is clear and nothing comes back stage. See, even the name... ambiguous. We have faith that she was healed. We have faith that God has cared for her every step of the way. But we are not promised complete healing. Actually just the opposite, we are promised there will be suffering in this world. I say this not to be pessimistic, but to be real. We have never had to struggle with the "why me?" In fact, just the opposite, "why not me?" We are never immune to suffering or safe from tragedy. This happens to families just like ours, just like yours, everyday. In the case of pediatric cancer, it's once every 3 1/2 minutes. This can happen to any of us and there are no guarantees, except one... Our God who loves us, created us, and sustains us has every page of our lives already written in His book. We can rest in His hands and trust His heart, no matter what happens.
As I look around at where we are right now, I am overwhelmed with gratitude. Our sweet little Julia went into a cocoon a year ago. We didn't know how or when she would emerge on the other side. It has been several months now since she began the healing process. She has had to heal physically from the chemo, the meds, and the port removal. It took several weeks to build up her endurance and stamina. Her hair is growing and she is feeling more like a little girl these days. She has been healing emotionally as she learns to be 3 again- learning to handle her emotions, follow the rules, interact with her brother, play with other children, be away from us, and process all she has experienced this year.
In the past week she has made tremendous strides. Her childish imagination is returning. We overhear her making up songs, talking to her animals, and pretending. Such a sweet sound! Her joy for life is returning. She is so excited to go places these days and is bubbling with details she can't wait to share afterwards. Her heart is healing, too. She has her sparkle back and is finding herself again. She loves to tell us she loves us in the most random moments.
She has recently been filled with amazing anticipation. We received the news that Julia's wish was being granted by the Make-A-Wish Foundation. Our little animal lover is getting her dream to go see the beluga whales, seals, sea lions, dolphins, dogs, horses, and orcas at Sea World in Orlando! We will be staying at the Give Kids the World Village and visiting several of the parks in Orlando. The kids are beyond excited and cannot wait for May to arrive. Julia has been dreaming about a family vacation for months. After everything she has been through this past year and everything they have had to give up I am brought to tears by the thought of them having a chance to get away in a child's paradise. We feel so blessed.
As spring unfolds around us, our sweet girl has emerged a butterfly and is eager to see how she can fly!
It is hard to believe a full year has gone by. I can still remember every detail of that day in vivid detail, as if it just happened yesterday. I remember every event, every thought, every feeling. It was like it was all happening in slow motion. As the world continued status quo around us, everything we knew was changed in an instant. God had ordained a path for us that we never imagined, but He was already going down it ahead of us. Every step would be in blind faith. We had no idea what to expect.
There are so many moments of the past year that have been life-changing for us...
- the moment the ultrasound tech came in the waiting room and told us the pediatrician needed to talk to us across the street
- hearing the pediatrician say, "We think she has cancer."
- standing in the rain crying as the words sunk into my soul
- meeting her pediatric oncologist an hour later
- handing her to a nurse to be taken to the OR
- hearing the OR nurse say on the phone line, "They are putting in her port now." our first confirmation it was cancer
- sitting down in the parent lounge to hear the "your child definitely has cancer" speech
- telling our children that Julia had cancer
- holding her and watching as the first round of chemo drugs went in
- laying her sedated body on the table while they mapped and marked her body for radiation
- her hair falling out in handfuls whenever I touched her head
- her first blood transfusion
- the moment I realize we felt completely at home in the oncology clinic and it had become a part of our routine
- watching what chemo does to a child
- the last day of treatment
- the first time we went out in public again without precautions
- the first time hearing the words, 'the scans are all clear'
The end of treatment in October and her first round of clear scans in January ushered us into a new world. It was a tough adjustment. Another cancer mom described it as being kicked out of the nest. When your child has cancer your schedule is not your own. As parents we are at the mercy of the doctors, hospitals and their plans. We wait to be told where to go and what to do. The idea of planning ahead or deciding when things will happen is a foreign concept. I laughed the other week at the peds office when I heard a parent arguing about when they could fit their child's next appointment into their schedule. In the cancer world we just nod and put the card in our bag. We are not in the driver's seat of our lives anymore.
When treatment ends you feel lost for awhile. The battle phase is over and now it is time to survey the battlefield and take stock of the situation. It was a slow process for us as we all adjusted to new roles, healed physically and emotionally, found a new rhythm, and started to rejoin the world as regular participants. When you are kicked out of the nest you suddenly discover you can't fly as gracefully as you may have before. There is healing that needs to happen before these wings can flap again. Outside the security of the nest and all the caring staff, it is an ambiguous place to be. Fighting cancer is an action. We hate to have to do it but as parents we like action. Now we are in the hoping all is clear and nothing comes back stage. See, even the name... ambiguous. We have faith that she was healed. We have faith that God has cared for her every step of the way. But we are not promised complete healing. Actually just the opposite, we are promised there will be suffering in this world. I say this not to be pessimistic, but to be real. We have never had to struggle with the "why me?" In fact, just the opposite, "why not me?" We are never immune to suffering or safe from tragedy. This happens to families just like ours, just like yours, everyday. In the case of pediatric cancer, it's once every 3 1/2 minutes. This can happen to any of us and there are no guarantees, except one... Our God who loves us, created us, and sustains us has every page of our lives already written in His book. We can rest in His hands and trust His heart, no matter what happens.
As I look around at where we are right now, I am overwhelmed with gratitude. Our sweet little Julia went into a cocoon a year ago. We didn't know how or when she would emerge on the other side. It has been several months now since she began the healing process. She has had to heal physically from the chemo, the meds, and the port removal. It took several weeks to build up her endurance and stamina. Her hair is growing and she is feeling more like a little girl these days. She has been healing emotionally as she learns to be 3 again- learning to handle her emotions, follow the rules, interact with her brother, play with other children, be away from us, and process all she has experienced this year.
In the past week she has made tremendous strides. Her childish imagination is returning. We overhear her making up songs, talking to her animals, and pretending. Such a sweet sound! Her joy for life is returning. She is so excited to go places these days and is bubbling with details she can't wait to share afterwards. Her heart is healing, too. She has her sparkle back and is finding herself again. She loves to tell us she loves us in the most random moments.
She has recently been filled with amazing anticipation. We received the news that Julia's wish was being granted by the Make-A-Wish Foundation. Our little animal lover is getting her dream to go see the beluga whales, seals, sea lions, dolphins, dogs, horses, and orcas at Sea World in Orlando! We will be staying at the Give Kids the World Village and visiting several of the parks in Orlando. The kids are beyond excited and cannot wait for May to arrive. Julia has been dreaming about a family vacation for months. After everything she has been through this past year and everything they have had to give up I am brought to tears by the thought of them having a chance to get away in a child's paradise. We feel so blessed.
Thursday, March 18, 2010
Happy St. Baldrick's!
Did you wear your green on Wednesday?
We did! For St. Baldrick's, one of our favorite charities.
We first learned about St. Baldrick's last year when Billy, his brother Anthony, and his friend Brian shaved their heads to raise money for pediatric cancer. Pediatric cancer continues to be the most underfunded group of cancers, receiving only 3% of national research dollars. It is considered an 'orphan cause' because it is not as profitable as many adult cancers. That sentence makes me sick to my stomach. Unfortunately in the realm of drug research profit drives funding.
But there ARE noble exceptions out there and groups doing the hard work for these kids. St. Baldrick's is one of those few who is putting the money in the hands of the researchers on the cutting edge and the front lines of these life or death battles. You can read more about their actual research on their site. Since 2000, they have given over $69 million to pediatric cancer research!!!
Did you know that without funds for research from organizatio
Wit
Can you even imagine being in the shoes of the parents who are told, "sorry, we have no more options for your child to fight their cancer?" It happens too often. Want to help make a difference?
- In 2009, St. Baldrick’s donors and volunteers made possible over $12 million in funding for childhood cancer research! This includes 28 grants, as well as funding for 45 young doctors who will be tomorrow’s top researchers.
- The Foundation funds local institutions and cooperative research on a national scale to help doctors work together to develop the best treatments for all children with cancer.
- St. Baldrick’s adheres to the standards set forth for top rated organizations by the US Better Business Bureau and charity rating agencies.
Did you know that without funds for research from organizatio
Wit
Can you even imagine being in the shoes of the parents who are told, "sorry, we have no more options for your child to fight their cancer?" It happens too often. Want to help make a difference?
- Visit the St. Baldrick's site.
- Join an event near you and raise funds for these kids. There are hundreds of them nationwide. Don't have one? You can start one. They will walk you thru the entire process and help you with everything.
- Donate in honor of Julia or another St. Baldrick's child. Check with your company, many businesses will match funds.
- Join Team Julia 2010 and shave your head for the kids, in Winston Salem on September 11, 2010. When you sign up they will send you the pins to wear and literature to help with fundraising. A bald head is a great way to spark conversation and spread awareness :)
Tuesday, March 16, 2010
A Bigger Plan
I found this song a few months ago, through the blog of a missionary family who lives in Haiti.
When we are faced with suffering, loss, natural disasters, disease, persecution, failures,...
How do we make sense of it all? Where is God's hand in all of this? In the moment when all seems lost, what is His plan?
When we are faced with suffering, loss, natural disasters, disease, persecution, failures,...
How do we make sense of it all? Where is God's hand in all of this? In the moment when all seems lost, what is His plan?
A THOUSAND THINGS (by Christa Wells)
You’re gonna cry yourself to sleep You’re gonna soak the pillow for many weeks
You’re gonna cry Why? Why me?
But in spite of the ache that doesn’t go away
You’ll be sharing your story one rainy day
And at the next table somebody catches your words
He hears a truth that he’s never heard
He takes it back to the marriage he’d given up on
Hands it down to his daughter who writes it into song
You didn’t know
A thousand things are happening in this one thing
Like a thousand fields nourished by a single drop of rain
So honey, wrap yourself in promise while you wait the morning light
A thousand things are happening tonight
You’re gonna cry yourself to sleep
‘cause for the moment all that you can see
Is what you’ve lost, lost Why me?
But in the midst of the most exquisite pain
you’re drawn into a peace that you cannot explain
and the praises you sing of a sovereign God
reach the girl whose last hope is gone
she never thought there was purpose in anything here
now the seed has been planted and it’s taking root there
You didn’t know
A thousand things are happening tonight
You’re gonna cry yourself to sleep
A thousand miracles you’ll have to wait and see
He's working ALL things together in an amazingly, perfect way that our minds cannot see.
He's working ALL things together in an amazingly, perfect way that our minds cannot see.
Monday, March 15, 2010
Marching Through March
As we march into March, I am keenly aware of our upcoming "cancer-versary". As we come upon the one year mark, I am struck by how much our lives and we have changed. In some ways it seems like "before cancer" was a lifetime ago, but in others it seems so familiar. As the seasons roll around again we are doing many of the same things we were doing this time last year. Once again we have snow in March, soccer season has begun, the Playhouse Disney show is in town soon, the kids are eager to play outside, we are planning for this year's garden, and the bulbs are starting to peek out of the ground. Our life before seems too long ago to remember, but the deja vu of it all stops me in my tracks some times.
It still astounds me what our family has experienced the past year. I know now first hand that God gives you grace for the moment when you go through cancer. Looking back now at pictures and remembering things that happened, I often find myself overwhelmed. We were truly being carried every step of the way. When I look at Julia's pictures though treatment and read my own words, it is still like hearing some of it for the first time. Cancer is such an ugly monster.
The past few weeks we have seen so many other children suffering and dying from this cancer beast. It is heart wrenching. Some of our friends are going through grueling treatment after relapse, like Vinny and Ellie. Life becomes a daily battle. Lily who continues to bravely battle neuroblastoma with brand new drug therapies. Sweet little Kate has relapsed in treatment for her ALL. Nothing has been easy for Kate. Every treatment, side effect, complication has caused her such suffering. She was preparing for a bone marrow transplant at Duke when they discovered her marrow was still full of cancer. They were given the choice of hospice or experimental drugs. They are giving her the drugs this week and storming the gates of heaven, believing in a miracle for sweet Kate. And precious baby Layla who lived almost her entire life fighting cancer, went home to Jesus this past week after weeks of suffering- unable to eat or drink, in pain, allergic to morphine and hanging on to life.
God, we just don't understand. My heart just breaks for all these precious children and their families left behind. My mind has been swirling with so many thoughts. Our Believing God Bible study continues to challenge and encourage me in tremendous ways. It is exactly the word I need to be hearing and believing.
Our bodies are intricately and infinitely complex, beyond what our minds can grasp. God has precisely planned every detail of each one of us. And he never takes His eye or hand off the ones He loves. God, you have promised that despite disease and illness on earth, You will heal it all in Your time and perfect plan. Though we may never understand that plan while we're still here. Seeing sisters have to say goodbye and watching parents walk their two year old home to meet Jesus will never make sense in my heart.
I am learning, sometimes the hard way, not to put God in a box. He cannot be limited or defined. Whatever I perceive Him to be today, I want to aim a little higher tomorrow.
It still astounds me what our family has experienced the past year. I know now first hand that God gives you grace for the moment when you go through cancer. Looking back now at pictures and remembering things that happened, I often find myself overwhelmed. We were truly being carried every step of the way. When I look at Julia's pictures though treatment and read my own words, it is still like hearing some of it for the first time. Cancer is such an ugly monster.
The past few weeks we have seen so many other children suffering and dying from this cancer beast. It is heart wrenching. Some of our friends are going through grueling treatment after relapse, like Vinny and Ellie. Life becomes a daily battle. Lily who continues to bravely battle neuroblastoma with brand new drug therapies. Sweet little Kate has relapsed in treatment for her ALL. Nothing has been easy for Kate. Every treatment, side effect, complication has caused her such suffering. She was preparing for a bone marrow transplant at Duke when they discovered her marrow was still full of cancer. They were given the choice of hospice or experimental drugs. They are giving her the drugs this week and storming the gates of heaven, believing in a miracle for sweet Kate. And precious baby Layla who lived almost her entire life fighting cancer, went home to Jesus this past week after weeks of suffering- unable to eat or drink, in pain, allergic to morphine and hanging on to life.
God, we just don't understand. My heart just breaks for all these precious children and their families left behind. My mind has been swirling with so many thoughts. Our Believing God Bible study continues to challenge and encourage me in tremendous ways. It is exactly the word I need to be hearing and believing.
Our bodies are intricately and infinitely complex, beyond what our minds can grasp. God has precisely planned every detail of each one of us. And he never takes His eye or hand off the ones He loves. God, you have promised that despite disease and illness on earth, You will heal it all in Your time and perfect plan. Though we may never understand that plan while we're still here. Seeing sisters have to say goodbye and watching parents walk their two year old home to meet Jesus will never make sense in my heart.
"God is too wise to be mistaken.
God is too good to be unkind.
When you don't understand,
When you can't see His Plan,
When you can't trace His hand,
Trust His heart."
-NewSong
God is too good to be unkind.
When you don't understand,
When you can't see His Plan,
When you can't trace His hand,
Trust His heart."
-NewSong
I am learning, sometimes the hard way, not to put God in a box. He cannot be limited or defined. Whatever I perceive Him to be today, I want to aim a little higher tomorrow.
Thursday, March 11, 2010
Tuesday, March 9, 2010
It Will Always Be There
We have been loving the arrival of spring weather and fun in the sun. Julia continues to enjoy her world of firsts. Last week we ate at Chick-fil-A and she got to play in the playland. She didn't remember what it even was. She never warmed up completely, but had fun with what she did try.
We also went back to playgroup. For five years we have opened our home every Thursday to our friends. It was one of the hardest things to let go when all this happened a year ago. They are our best friends and chosen family. They have done so much for our family this past year and everyone of those sweet little ones has unfortunately had to learn about cancer, too. They have continued to meet at others' homes and we were thrilled to join them. It was like going back home. We all had our love tanks filled. We are much better people all around when we spend time with friends. Julia is doing well assimilating socially, after just a few weeks. She warms up much easier than she was before. When she feels overwhelmed she runs over and wants to be held. I am so proud of her for all she has had the courage to do.
She had the chance to do something big last week. Can you guess?
She rode one of the rides outside the store. I have said no every time for the past year, not wanting her to pick up anything. She couldn't believe my offer to ride it. She asked, "Really?" twice. It's the simple things to a three year old.
We couldn't get enough of the amazing weather this weekend. Sunday we were outside after church from lunch until dark. The warm sunshine felt so good. And in our house the first thing to go is the shoes. We all love to be barefoot in the backyard (all except for Daddy, he's a 'socks and shoes' boy). The kids said it felt like the beach being in the sandbox. I love seeing those bare little toes. Summer can't be too far off!
We all came down with colds our first week of freedom. Welcome back to the germs! The cold and sinus issues lingered for a good two weeks. Crazy enough, Julia was able to fight it off after only two days!! And she's the one with the low WBC and ANC! Last week, we were all remarking how we couldn't wait to breathe through our noses again. Carter laughed that Julia was better first. Her reply, "It's because I go to the hospital so much. Don't you remember I'm a superhero now?" Apparently she is right. I guess after your body fights cancer, a cold is no big deal :)
We are continuing with the bowel retraining. The miralax is still doing it's thing and we are just working through the six weeks till her next appointment. She did start asking next week when she can wear her underwear. At this point it would be difficult with the effects of the miralax. I'm wondering if being back around her peers is making her want to be potty trained again. I hope this interest leads to success in the future.
A few weeks ago one of Julia's right ear was draining a blood-tinged fluid. She had ear tubes put in when she was two because of her antibiotic allergies, a few rounds with ear infections, and a ruptured ear drum from strep. They have done their job beautifully and we knew the one in her right ear was on its way out. She was not sick, feverish, or in pain so we assumed the draining was from the tube falling out. We have drops to use and decided to wait and see.
Over the past couple months, Julia has fallen into the habit of saying, "what?" to everything we say. Carter did a similar thing at 3yrs, so we figured it was just a stage. But it continued to get worse. She asked us to repeat everything 3-4 times. Try this, just for a little while. Preschoolers require enough talking as it is, the repetition was making me nuts. It is exhausting to do and so hard to talk loud in a cheerful tone. I was really struggling to keep my patience. We started watching our interactions more closely and realized she was still asking 'what?' even when there was no background noise and we were face to face. Definitely a concern.
Last week I was reading to them and she was sitting on my lap. She looked at me and said, "Mommy, I can't hear you when you are reading." Huge red flag. I called our wonderful ear doctor, Dr. Krauss. He was concerned. They were closed the next day, but promised to see her Monday.
Last night as I gathered her medical binder, I went over all the drugs she's been given over the past year...
...vincristine, dactinomycin, doxirubicin, zofran, miralax, codeine, morphine, tylenol, bactrim, clonidine, propofol, versed, toradol, rocephin, tamiflu...
to name a few. Then I went over the pages and pages of side effects- immediate, short term, and long term. In the midst of treatment the doctors go over all of these and you listen, halfheartedly. They have to read the list, your child needs the drugs, and you have to sign. The rest is just a formality. But signing on that line is a lifelong enrollment in the cancer club. Not only are their immediate horrible side effects, there are scores more than can pop up at any time. Every health issue Julia has from this point forward will be viewed through the cancer lens.
And these don't include the radiation. Her abdominal radiation was 11Gy to her abdomen, the equivalent of something crazy like 40,000 chest xrays a day. I try not to think about it. Reading all those risks again was almost too much...
Both sides of the spine are radiated to prevent spinal curvature, since height will be lost on both sides. The muscles supporting the spine will not grow as well as before. The liver is in the field and can be affected. The breast tissue may or may not be affected, begin early screening in late 20s. The intestines are a direct hit and form scar tissue which may cause bowel obstruction at any time in the future. The reproductive organs are a question mark, only time will tell if fertility was impacted. The risk for all types of secondary cancers is a factor in the future.
This is one of the hardest things about cancer. It is like a leech you cannot remove. It will always be present. Every procedure, treatment, surgery, drug, scan brings with it its own file full of side effects. Such a lifelong burden on these young little ones.
We experienced that firsthand today. Dr. Kraus was wonderful. We caught him up to speed and he too reviewed all the drugs and treatments. Fortunately none of these classes of drugs affect the ears. I think it may be the only safe body part in her case (and maybe pinky toes?) There are several chemo classes that cause hearing loss, but none of hers qualify. Phew, deep breath. So now we trudge on to figure out what is happening. I really had no idea what to expect.
He laid her back in the chair and looked in her ears. The right one was bad news. Not only was there bloody drainage, pus, and ear wax- he also found a mass. After cleaning out everything he could, he worked for a good while digging out what remained. What he finally removed was the size of a pebble. Apparently her compromised immune system allowed the growth of a tissue covered polyp in her ear. He also found the tube that had fallen out. Her eardrum has healed completely already. So essentially she could not hear out of her right ear at all. The left ear looked good and the tube is still intact. We will now do antibiotic drops in the right ear for a week to be sure it is clear and healthy.
He also wanted to test her hearing. He was concerned there may be some issues from the challenges to her immune system. She was such a cooperative participant and did a great job with the testing. They were able to do the full school-age exam. They sent us back in the room to wait. As we sat Julia said, "Mommy, I can hear you breathing." and "I can hear my shoes when they walk on the floor." Apparently, she is seeing improvement already. Good news.
Dr. Kraus brought us the results a few minutes later. Her right ear (had the polyp) scored 9/10 and her left ear (with the tube) was 8/10. So with the two issues combined he said she would have had a very difficult time hearing. Mystery solved! Lots of thank yous and high-fives and we were on our way out a few minutes later. As we waited in the hall for the elevator, Julia could hear the 'elevator music' in the background :) and started dancing to the jazz. I think we're making progress. So we've cleared another hurdle and Julia has come out ahead again. She is facing every hurdle with eager determination and excitement as she charges ahead and finds her way...
...ready to face any obstacle in her path, with a smile and a little dance.
We also went back to playgroup. For five years we have opened our home every Thursday to our friends. It was one of the hardest things to let go when all this happened a year ago. They are our best friends and chosen family. They have done so much for our family this past year and everyone of those sweet little ones has unfortunately had to learn about cancer, too. They have continued to meet at others' homes and we were thrilled to join them. It was like going back home. We all had our love tanks filled. We are much better people all around when we spend time with friends. Julia is doing well assimilating socially, after just a few weeks. She warms up much easier than she was before. When she feels overwhelmed she runs over and wants to be held. I am so proud of her for all she has had the courage to do.
She had the chance to do something big last week. Can you guess?
We couldn't get enough of the amazing weather this weekend. Sunday we were outside after church from lunch until dark. The warm sunshine felt so good. And in our house the first thing to go is the shoes. We all love to be barefoot in the backyard (all except for Daddy, he's a 'socks and shoes' boy). The kids said it felt like the beach being in the sandbox. I love seeing those bare little toes. Summer can't be too far off!
And now for a health update...
We all came down with colds our first week of freedom. Welcome back to the germs! The cold and sinus issues lingered for a good two weeks. Crazy enough, Julia was able to fight it off after only two days!! And she's the one with the low WBC and ANC! Last week, we were all remarking how we couldn't wait to breathe through our noses again. Carter laughed that Julia was better first. Her reply, "It's because I go to the hospital so much. Don't you remember I'm a superhero now?" Apparently she is right. I guess after your body fights cancer, a cold is no big deal :)
We are continuing with the bowel retraining. The miralax is still doing it's thing and we are just working through the six weeks till her next appointment. She did start asking next week when she can wear her underwear. At this point it would be difficult with the effects of the miralax. I'm wondering if being back around her peers is making her want to be potty trained again. I hope this interest leads to success in the future.
A few weeks ago one of Julia's right ear was draining a blood-tinged fluid. She had ear tubes put in when she was two because of her antibiotic allergies, a few rounds with ear infections, and a ruptured ear drum from strep. They have done their job beautifully and we knew the one in her right ear was on its way out. She was not sick, feverish, or in pain so we assumed the draining was from the tube falling out. We have drops to use and decided to wait and see.
Over the past couple months, Julia has fallen into the habit of saying, "what?" to everything we say. Carter did a similar thing at 3yrs, so we figured it was just a stage. But it continued to get worse. She asked us to repeat everything 3-4 times. Try this, just for a little while. Preschoolers require enough talking as it is, the repetition was making me nuts. It is exhausting to do and so hard to talk loud in a cheerful tone. I was really struggling to keep my patience. We started watching our interactions more closely and realized she was still asking 'what?' even when there was no background noise and we were face to face. Definitely a concern.
Last week I was reading to them and she was sitting on my lap. She looked at me and said, "Mommy, I can't hear you when you are reading." Huge red flag. I called our wonderful ear doctor, Dr. Krauss. He was concerned. They were closed the next day, but promised to see her Monday.
Last night as I gathered her medical binder, I went over all the drugs she's been given over the past year...
...vincristine, dactinomycin, doxirubicin, zofran, miralax, codeine, morphine, tylenol, bactrim, clonidine, propofol, versed, toradol, rocephin, tamiflu...
to name a few. Then I went over the pages and pages of side effects- immediate, short term, and long term. In the midst of treatment the doctors go over all of these and you listen, halfheartedly. They have to read the list, your child needs the drugs, and you have to sign. The rest is just a formality. But signing on that line is a lifelong enrollment in the cancer club. Not only are their immediate horrible side effects, there are scores more than can pop up at any time. Every health issue Julia has from this point forward will be viewed through the cancer lens.
And these don't include the radiation. Her abdominal radiation was 11Gy to her abdomen, the equivalent of something crazy like 40,000 chest xrays a day. I try not to think about it. Reading all those risks again was almost too much...
Both sides of the spine are radiated to prevent spinal curvature, since height will be lost on both sides. The muscles supporting the spine will not grow as well as before. The liver is in the field and can be affected. The breast tissue may or may not be affected, begin early screening in late 20s. The intestines are a direct hit and form scar tissue which may cause bowel obstruction at any time in the future. The reproductive organs are a question mark, only time will tell if fertility was impacted. The risk for all types of secondary cancers is a factor in the future.
This is one of the hardest things about cancer. It is like a leech you cannot remove. It will always be present. Every procedure, treatment, surgery, drug, scan brings with it its own file full of side effects. Such a lifelong burden on these young little ones.
We experienced that firsthand today. Dr. Kraus was wonderful. We caught him up to speed and he too reviewed all the drugs and treatments. Fortunately none of these classes of drugs affect the ears. I think it may be the only safe body part in her case (and maybe pinky toes?) There are several chemo classes that cause hearing loss, but none of hers qualify. Phew, deep breath. So now we trudge on to figure out what is happening. I really had no idea what to expect.
He laid her back in the chair and looked in her ears. The right one was bad news. Not only was there bloody drainage, pus, and ear wax- he also found a mass. After cleaning out everything he could, he worked for a good while digging out what remained. What he finally removed was the size of a pebble. Apparently her compromised immune system allowed the growth of a tissue covered polyp in her ear. He also found the tube that had fallen out. Her eardrum has healed completely already. So essentially she could not hear out of her right ear at all. The left ear looked good and the tube is still intact. We will now do antibiotic drops in the right ear for a week to be sure it is clear and healthy.
He also wanted to test her hearing. He was concerned there may be some issues from the challenges to her immune system. She was such a cooperative participant and did a great job with the testing. They were able to do the full school-age exam. They sent us back in the room to wait. As we sat Julia said, "Mommy, I can hear you breathing." and "I can hear my shoes when they walk on the floor." Apparently, she is seeing improvement already. Good news.
Dr. Kraus brought us the results a few minutes later. Her right ear (had the polyp) scored 9/10 and her left ear (with the tube) was 8/10. So with the two issues combined he said she would have had a very difficult time hearing. Mystery solved! Lots of thank yous and high-fives and we were on our way out a few minutes later. As we waited in the hall for the elevator, Julia could hear the 'elevator music' in the background :) and started dancing to the jazz. I think we're making progress. So we've cleared another hurdle and Julia has come out ahead again. She is facing every hurdle with eager determination and excitement as she charges ahead and finds her way...
Saturday, March 6, 2010
Confession Time
I try to keep my words on this blog real and give a realistic picture of what we experience, but despite good intentions, it doesn't always happen. It's just not human nature to regularly publish our failures, insecurities, weaknesses, and sins, but that doesn't make them any less real. I have showed my sink full of dishes and messes on the floor, revealed my doubts and fears, and ranted a little. I just feel this pressing need to shatter the image that it's possible to get it all together. Here are some of the frustrations I struggle with on a regular basis...
(And this makes me feel much better and reminds me of my goal.)
- I like to take my time getting started in the mornings. We are generally awake a good 1-2 hours before we get out of bed for the day.
- When I am stressed, overwhelmed, hungry, tired, or sad- I yell. It breaks my heart that I do and I feel convicted as soon as I do it and see the look in my kids faces, but I still yell. I have also thrown things (never at the kids), slammed doors, and rolled my eyes. Not the best role model.
- I am a people person and am energized by being around others. When we don't get out, I slip very quickly into depression and become less available to my kids. I then crave the social interaction and connection from emails, blogs, and facebook and ignore my children.
- I do not regularly clean my house. I do like to organize and have a touch of OCD that keeps things relatively neat. However, clean is a whole other ballgame. Aside from vacuuming, some lysol, and wiping counters, the rest is rare.
- I am a horrible procrastinator! But also a type A perfectionist and over-achiever. I was already pulling all-nighters in middle school working on big projects and papers. And it only got worse. In college I could do a 3pg paper in an hour, 5pgs overnight and 20pgs in a weekend. Unfortunately I am still the same way. I do my best work under pressure and don't plan ahead well at all. Sadly my desire to do things well, makes me not want to even attempt it if I can't give it my full attention. I have left so many things undone.
- There are weeks we homeschool everyday and weeks we don't do even one day. A consistent schedule has definitely not been our strong suit lately.
- I have found myself at times encouraging my kids to watch something on TV even if they were happily doing something else because I wanted a break or nap.
- At my best I exercise 3 times a week, but more often once every 3 weeks. I'm optimistic it will improve when the weather gets warmer. I really want to be able to wear all the clothes in my closet.
- I hate that it takes me forever to get back to people by email, phone, mail, etc. It is not unusual to be weeks or months. I think about it and often plan out everything I want to say, but my follow through stinks. I am often late or miss special events because of my own disorganization. There is no excuse. Good intentions are not enough.
- I suffer from the same 'mommy guilt' every mom feels. I really think it's the enemy's way of keeping us ineffective. After all, when your home for long periods with lots of small children, you will falter... repeatedly. We can't keep all these balls in the air. At least one will always fall, sometimes more, sometimes all of them. And we are all human.
(And this makes me feel much better and reminds me of my goal.)
Friday, March 5, 2010
Token Time
The kids have so many fun things to do that involve screen time- DVDs, Tivo, Wii, computer games, iPod touch games, etc. There is so much great stuff available, it is easy to lose track of all the technology. We have worked hard to wean Julia off of TV after her chemo days. With winter dragging on and the amount of time we spend at home, I wanted an easy way to regulate how much they were watching. We made these after an idea from Kelley...
It was very simple to do. We used foam door hangers, a bag of magnets from WalMart (they are self-adhesive) and I let the kids each paint 4 wooden shapes. Paint, peel, and stick and we were ready to go. Each token is for 30 min of screen time. (Computer time assigned by mom during school doesn't count.) They cannot earn additional tokens. At this point we do not take away their tokens as a consequence, but I could see that potentially being used in the future.
Initially I imagined this was going to be one more thing for me to keep up with, but at least I wouldn't have to remember in my head. I was completely wrong. The kids both monitor themselves independently. They didn't resist the new rules at all. I was reminded how well they respond to structured limits. Everyone knows the rules and there is no need to debate. The best part is it has made them more discriminating in their choices and helped them with time management. They now plan ahead for shows they may want to watch later or a game they want to play with Daddy in the evenings. At night they put their tokens back. We have been impressed by their maturity.
It has also led to an interesting addition. Occasionally we want to have a family movie night or watch a sporting event on TV (basketball, Olympics, etc.) For these circumstances we offer them "TV grace". It has helped them to understand what grace means. It's not something they can ask us for. It's not something they can earn or deserve. It must be given as a gift and received humbly.
Initially I imagined this was going to be one more thing for me to keep up with, but at least I wouldn't have to remember in my head. I was completely wrong. The kids both monitor themselves independently. They didn't resist the new rules at all. I was reminded how well they respond to structured limits. Everyone knows the rules and there is no need to debate. The best part is it has made them more discriminating in their choices and helped them with time management. They now plan ahead for shows they may want to watch later or a game they want to play with Daddy in the evenings. At night they put their tokens back. We have been impressed by their maturity.
It has also led to an interesting addition. Occasionally we want to have a family movie night or watch a sporting event on TV (basketball, Olympics, etc.) For these circumstances we offer them "TV grace". It has helped them to understand what grace means. It's not something they can ask us for. It's not something they can earn or deserve. It must be given as a gift and received humbly.
Tuesday, March 2, 2010
Too Much of a Good Thing
We ordered our water park passes today, so as we watch the snow fall we'll be dreaming of splashing, sliding, and sunshine :)
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