Still waiting

It's almos 2.30, and we continue to wait for some news. We reported to the hospital at 8am this morning, and Elliot was taken to the Operating Room at 11:15am. We received news that surgery began at 12:45pm. So...we continue to wait alongside our parents and our sweet girl, Julia.

I will update you all as soon as I have a chance after surgery...perhaps this evening.

Thanks for all your thoughts, prayers, messages, and encouragement. They mean more than you will EVER know!

OUR SUPER HERO ALL READY FOR THE BIG DAY!

Chemo #10...last one before surgery

Sunday, December 14, 2014

Here we are...done with all rounds of pre-surgery chemo. Hallelujah! While it feels good to know that we have a couple weeks off from chemo, we obviously still have some anxiety about the upcoming CT scan and surgery. We are trying our best to enjoy each day of "health" and happiness, but the unknown still lingers in the back of our minds.

As of now, a CT scan is scheduled for December 29th, along with an appointment with the surgeon to discuss what she sees in the CT scan and plans for surgery. Assuming all findings from the CT scan are conducive for surgery, we will have the tumor removed the next day, December 30th, and likely the kidney as well. As I alluded to earlier, we are beyond excited to get the tumor out of his body, yet we are truly aware of the uncertainties involved. Best case scenario, the tumor is easily removed in an enclosed, safe mass, the doctors don't find any evidence of cancer cells in the blood stream or lymph-nodes, and the histology is favorable, rather than unfavorable. Each of these variables could likely change our course of action for either good or not-so-good. Nonetheless, we will not be left without hope, regardless of what happens. We continue to give thanks for our many blessings, as we know there are may, and it's likely that if you are reading this, one of those blessings is YOU! 

We will be taking the next couple weeks off from the blog beings there won't be much to share in regards to "updates". If there is a change of plans, we will certainly notify all of you, as we know you are sending prayers on our behalf.  For now, we say THANK YOU and may you all receive God's many blessing during this miraculous time of year. Merry Christmas!

All our love,
Dan, Simone, Julia and Elliot

Chemo #9 - Dan's Guest Blog

Hi everyone.  This is Dan.  Simone has temporarily relinquished the reigns of the blog this week and handed them over to me, which could prove to be an utter catastrophe.  I'll try to stick to her guidance and all should go well.  We've had a good week this week leading up to Elliot's 9th chemo treatment.  His moods and energy levels are up and down as usual, but all in all he is a really amazing and sweet little boy in wake of his cancer and treatments.  I'm continually amazed at his resiliency and adaptability.  Last weekend we went to a local Christmas tree farm to find a tree.  We had differing versions of 'the perfect' tree.  (Elliot's is in his hand if you look closely)

We didn't end up with either, but it all worked out and we had a nice time.  The kids took their turns discussing the upcoming Christmas with Santa and enjoyed some hot cider and cookies.

We also spent part of last weekend with Simone's side of the family to celebrate Thanksgiving and an early Christmas.  It was great to be with family.  The kids love their cousins, aunts and uncles, and grandparents dearly...and we do too!

As we met with the pediatric oncologist this week we got more clarity on the next steps to be taken.  Next week (Elliot's 10th chemo treatment) will be his final round before surgery.  This will give him a couple weeks to strengthen his immune system in preparation.  He will have the next CT scan shortly after Christmas day with the likelihood of surgery during the week after Christmas.  Once the tumor is removed and tested for the type of cancer, we will have a much better idea as to the schedule for radiation and further chemo treatments during the following months.  Both Simone and I are anticipating the removal of the tumor with both excitement and angst.  We want it out, but understand the invasiveness of the surgery and uncertainty of all that is to follow.  We do our best to maintain a positive outlook as the numbers are certainly in Elliot's favor. 

For those of you who have been diligently praying, thank you! Please pray for the upcoming CT scan and surgery. Poor Elliot has already been through so much and has handled it all with stride. Please pray that he continues to do so. Also, after the surgery, the doctors will finally be able to test the tumor and know the exact kind of Wilms tumor with which we are dealing. It can either be favorable, which is what we want, or unfavorable, which would likely require a more aggressive approach during the second half of chemo and during radiation. This weighs on our minds a great deal. Your prayers are so much appreciated.

I have much to be thankful for as I reflect on the past couple of months through a new lens.  I have an amazing spouse and life partner.  She's sincere, inspiring, and loving.  Those who know her know this.  I am lucky.  Julia and Elliot are my life.  Family, friends, coworkers, and anonymous folks have been supportive in ways unimaginable.  My thanks cannot express my deep sincerity!  As we travel to Mayo weekly, we meet parents and children that place our situation into perspective.  I am so thankful for where we are, what we know, and what we have.  

Chemo #8 and HAPPY THANKSGIVING!

Thanksgiving Day, 11/27/14

Happy Thanksgiving to all! We know this year, more than ever, that we have so much for which we are thankful! May we never take life, health, family or friends for granted ever again! Though we are a midst great trial in our lives, we are also keenly aware of God's many blessings. It's so easy to take details of our lives for granted when everything is going great...trust me, I KNOW! I've done it for years. Actually, I've done it much of my life. I've had a relatively seamless life in comparison to many. And even now, despite Elliot having cancer, I am absolutely aware that things could be worse. I thrive on the hope and prognosis that we currently are given. I will hope and thrive on that until I have any reason to think otherwise. However, there are many who do not have the same hope and prognosis that we have; if that happens to be you, please know that my thoughts and prayers have been with you ALL DAY! 

Today was another positive day at Mayo. Elliot's blood counts were great, and he received chemo as expected. He was a trooper, as usual, and Julia was a great support. We had a nice Thanksgiving brunch between appointments, and we were all able to get some sleep on the trip home (except for Dan of course)!

Let me be honest about this past week. It was tough. Don't get me wrong, nothing major happened, but my mommy emotions finally kicked in. Up until this point, I've been able to be a rock...strong and happy (with God's help of course) But lets be serious...it's tough watching my little boy day-in and day-out with much less energy than normal, minimal hair, pale skin and red eyes. I'm not trying to paint a sad picture because quite frankly, he does so well. I am, however, being honest, just as I have always been throughout this entire journey. Needless to say, my heart still aches, and I ask the tough questions. Why Elliot? It doesn't make sense. We've tried to do everything right, just as most parents do. I don't expect answers to my questions, but they still run through our minds...daily. I've been able to shed some much-needed tears this week and mourn a loss of our normalcy. Our new normal is good, but it's different. As a previous social worker, and sister of a therapist, I'm aware that these steps are necessary and good, but let me tell you, it's not really that fun, as many of you know!

Other than my emotions this week, things have been great. :) We continue to receive support from our amazing family and friends. Your continued prayers, cards, financial support, hugs, meals, visits, etc. bless us EVERY DAY! You seriously have no idea how much you all mean to us. We had no idea the amount of love and support that existed for our family. It has brought happiness and love to our lives every day. THANK YOU!

May you all experience the love of God, family and friends this Thanksgiving. If your day wasn't what you expected, know that you are not alone, but that different is okay. We can find love and happiness, even in the tough circumstances. I'm not pretending to understand where you are, but I'm letting you know that you're not alone. God's blessings to you!

Thanksgiving brunch after "Tubey's tail" got put on

 Killing time between labs and chemo at the hospital

 More playing at the hospital

                                                                                        

Chemo

Weekly car snooze after chemo

 Thanksgiving cuddles after chemo at home

Thanksgiving dinner at home...chicken stir fry! :)

 Snuggles with mommy

chemo #6 and CT scan

Saturday, November 15

Well, it has been an emotional day around our house this snowy Saturday. We woke this morning to the realization that Elliot's hair has begun to fall out. :(  Even though we were almost positive that this was going to happen, it still tugged at our hearts in a way we didn't expect. You see, up until now, it has been easy to forget about our circumstances. To the naked eye, Elliot has seemed like the same little 2-year-old as always...a wild, sweet, rambunctious, inquisitive, snuggly, happy, bright little boy. We know that while most of these things won't change, as of tomorrow we will have the physical reminder of his cancer.  This makes mommy and daddy feel sad. We plan to have a "hair-cutting-party" with Elliot's almost 2-year-old cousin, Arie, tomorrow. My brother, TJ, and his wife, Jodi, decided in the very beginning that they would buzz Arie's head alongside Elliot when and if the time came. Well, the time is here, and my brother and his family are making  a last-minute trip from Des Moines so that we can go through this process together. I couldn't ask for a better brother and sister-in-law. He was my best friend through all of my growing-up-years, and he and his family continue to stand along side us through every step of this journey! I'll be sure to attach some adorable pictures next week of Elliot's handsome, buzzed head!

We have also noticed an increasing tiredness in Elliot's legs. By the end of each day, he struggles to be as active as usual. Tonight, his legs appeared to be more stiff, and he has been wanting me to carry him everywhere. So...I do! :)

Please keep both of these challenging hurdles in your prayers...emotional strength for mommy and daddy, and physical strength for Elliot's legs!

Our appointments this week were on Thursday due to scheduling issues with the surgeon. It was a LONG day. From the time we pulled out of the driveway on Thursday to the time we returned back home, 13 hours had passed. Needless to say, we were exhausted. Apparently, I was a bit crabby according to my husband :) Thankfully, Dan's parents were able to be here with Julia that day. What a blessing!

The first appointment was his CT scan. We assumed that they would give Elliot some type of gas to help him relax and lay still during the scan. Much to our surprise, that was not the plan. Nonetheless, the little champ pulled through with a scan...minimal tears, a still body, and proud parents are some ways to describe the moment. We were in shock. Elliot is not known for his ability to lay still and cooperate in seemingly scary situations, but he amazed us all during the scan. The nurses and staff did a great job preparing him for the scan and were clearly very amazed themselves by his performance.

Though the results didn't turn out exactly as I had prayed for, we still received great news. First of all, his tumor is SHRINKING! Unfortunately, it's not small enough to remove sooner than we expected, but it IS getting smaller and appears to be on schedule to remove after another six weeks of chemo. You see, I was hoping and praying for a tiny little tumor that could be removed perhaps the next day! :) I even packed an overnight bag in case that was the situation. I know my hopes were high, but I was not let down. My other prayers were answered: there appears to be no more bleeding; the blood spillage that was there initially seems to be reabsorbing, which is good; and there weren't any other abnormalities in the scan (nothing in the lungs, which was a concern since they couldn't see the lungs in their entirety from the first scan). So, in the end, we are so grateful for the results. Nothing wrong with hoping and praying for small miracles here and there, even if they don't happen, right?

The rest of our day was fantastic. Thanks to so many of you who have sent gift cards for restaurants, we were able to spend some downtime together over a nice lunch and dinner without spending a ton of money. Also, thanks to the many gas cards you all have provided, we have been able to fill up our gas tank time and time again without gouging into our own funds. THANK YOU!

To those of you who have sent cards, gifts, money, and so much more but have not yet heard from us, please know how much you have lifted our spirits day-in and day-out. It seems that every trip to the mailbox turns into feelings of joy and love, and sometimes tears of gratitude. For those who have been anonymously helping us in different ways, THANK YOU! We may NEVER thank you face-to-face, but your love and thoughtfulness has helped get us through this journey with a positive outlook.

Finally, please keep praying! As I mentioned earlier, pray for emotional strength for Dan and I, for physical strength for Elliot, for peace and understanding for Julia, for continued shrinking of the tumor, for no spreading of tumor cells, and finally, for God's peace to continue filling our home!

Passing time as we wait for the scan

Elliot insists on wearing these gloves when the nurses wear them

Crabby and tired :) (Elliot, not daddy)

Practicing some "skipping"...we have a long ways to go!

first week home and chemo #5

This was my first full week home with Elliot. All went well! One of the first mornings I stayed home, he looked at me and said in his pitifully sweet voice, "Mommy, I don't want you to go!" It warmed my heart to be able to say, "Honey, mommy's not going anywhere. I get to stay home with you every day." His eyes were brighter than I had seen them in a long time. Needless to say, I've been feeling grateful.

Overall, Elliot has had a good week. Despite his additional dose of chemo last week, he has been in pretty good spirits. He obviously gets more tired, and is much more moody, but compared to how we adults would deal with it, he's truly a superstar! His moods are becoming much more difficult to deal with, as it can be very challenging to know if he's misbehaving based on not feeling well or if he's simply being a 2-year-old little boy. Dan and I both struggle with this. The last thing we want in the end of all of this is a spoiled, whiny little boy, but quite frankly, that could happen. Nonetheless, we remind ourselves that we're doing the best we can and that we completely expect to do some "re-training" for both our kids when this is all said and done! :)

Friday went well. Julia joined us for the day and was able to observe everything that her little brother experiences each Friday. She was nothing less than encouraging and sweet. She even "took one for the team" and got her flu shot. Of course she had to name her "owie" just like Elliot named his "tubey". For the record, her little "friend's" name is Eely. :) I think it was comforting for Elliot to have his sister there with him, and hopefully it helped Julia comprehend, to the extent that a 4-year-old can, what this "cancer thing" is all about. She has displayed some signs of confusion recently in regards to her brother being "sick". To her, he's pretty normal. They still draw together, do puzzles together, chase each other and fight with each other, so this "sick" thing is a bit confusing. She knows he can't go to "school" because he's "sick", but her poor little mind can't quite grasp the reasoning behind it all. The strange thing is that in the end, she will most likely recollect this stage of life and Elliot will not. We're hoping that over the next few months, we can help her understand better. Friday was a good step towards that goal. 

Elliot's blood work turned out great again on Friday! We hope and pray for that every week. He was able to receive chemo as usual and there weren't any unexpected instances throughout the day.  The nurses and doctors all seemed to be surprised that he has not yet lost his hair. Not only has he not LOST his hair, his hair is long, thick and "rockstarish-looking" if you ask me. I'm completely opposed to cutting it unless absolutely necessary due to his utter dislike for the hair-cutting process. Therefore, we could really have some amazing hair by the end of this journey if he doesn't end up losing it! :)

Week after week, the doctors have asked us about Elliot's legs. In the beginning, they told us to keep an eye on his walking and possible stumbling from time to time. We never thought too much of it due to the fact that it was always mentioned in passing. Well, once again they asked this week, and we said that he continues to walk, and even run, quite normal. I asked the doctor what the chances of having issues with his legs are throughout the chemo. She explained that it is quite common and that they're a bit surprised that he hasn't struggled with it at this point. She explained this his chemo impacts the nervous system, which results in things like constipation and leg functioning. If he does experience problems walking, we will need to add a physical therapy appointment to our already vast array of doctors appointments on Fridays. Many kids his age end up using walking boots to assist them while they are on chemo. So far, there aren't any signs of this for Elliot, and our prayer is that he will continue to beat the odds. One of his favorite past-times is playing "chase", and it would break my heart if we weren't able to do this together anymore. Please keep this in your prayers!

Our appointments for next week are scheduled on Thursday rather than Friday due to scheduling conflicts with the urologist. We are scheduled to have a CT scan at 10am on Thursday to check on the progress of the tumor. According to physical examination, the tumor is shrinking quite rapidly, and our hope is that they find nothing different on the CT scan. Please pray for peace for Elliot and ourselves as we go through this process once again. No matter how many times you experience procedures such as this, it's never easy...especially for a 2-year-old who has no idea why he has to go through it!

Once again, our hearts are full this week! The number of people who have gone out of their way to make our lives easier...sent cards, sent gifts, brought meals, offered assistance, given hugs, sent emails and messages, and so much more...please know that YOU ARE TRULY APPRECIATED! Our community of friends and family continues to amaze us and bless our lives! THANK YOU!

Peace and love to you all as you experience your own challenges throughout this week. We know we're not alone and want you all to know that our hearts are with you, just as yours are with us!

Halloween and chemo #4

Here I am...another Sunday evening, the house is quiet, the kids are sleeping, AND...I GET TO BE HOME WITH ELLIOT ALL DAY TOMORROW! We have some great news! Mommy will be staying home with Elliot throughout the rest of this journey. Thanks to the the generosity of a lovely family who offered to help us financially, I will be able to stay home with Elliot throughout the rest of his treatments. We couldn't have asked for a greater gift. We are truly feeling blessed!

Friday, October 31st

Well, it's Halloween. It's the day that most parents are trying to get the costumes ready and the candy in the the infamous bowl. Thanks to the Brown's, Julia will know nothing different. I brought her costume (her fairy princes costume) in a plastic bag to preschool this morning so Toni could pick it up when she picked up her daughters and Julia from preschool. Obviously it was a relief to have Julia going to a fun place with her best friend for Halloween, but I still felt sad that we couldn't be with her. Thankfully, she most likely won't remember!

As far as Elliot goes, he was ready to greet the day with his super hero powers!

He ran through the Mayo hospital with his fist in front of him and his super hero voice screaming aloud. Dan and I couldn't stop laughing. Others seemed to enjoy it as well, but quite frankly, we didn't care! :)

The day went very well! Elliot seems to be getting more and more used to the situation and seems to be less and less distracted by the nurses and doctors. We are so proud of his bravery and couldn't ask for a stronger, happier little man!

He received two types of chemo this week rather than the one that he has been getting for the last couple of weeks. Apparently, the additional chemo has a tendency to cause more side effects, specifically mouth sores and nausea. Please pray that he does not experience these side effects as expected. So far, he is doing quite well. He appears to be more tired than normal, and we have noticed a tiredness about his eyes...red and watery. Other than that, the boy is a champ. We are grateful!

Please continue to pray for strength as he moves through this journey. He is doing so well! I can't imagine a greater blessing than to continue seeing his daily smile and to hear his precious, happy voice. 

Julia is doing great as well. I was able to join her on her preschool field trip to a farm this week. We had a blast. She is such a happy, compliant, inquisitive little girl. I was proud to all her mine! :)

Thanks again for your many prayers, financial support, gifts, hugs, meals, and so much more. We are truly grateful for such a loving community of friends and family!

A great week and chemo #3

After our scare last weekend with Elliot's fever, we had a GREAT week. The labs came back showing no bacteria, which is what we wanted, and his fever declined. We're grateful to have had the ER experience here in Waverly to have broken the ice and to made our situation known. They are now aware of Elliot and know who we are (by first name unfortunately). This gives both Dan and I a sense of peace.

As of Monday, Dan's parents were here for the week. According to Joan, Dan's mom, Elliot was an "angel". For some reason, he rarely shows that side to us these days, but he seems to charm everyone else when mommy and daddy are away. From what I hear, that's pretty typical? :)

As far as today goes, we made it through chemo #3. Elliot was strong and brave, nothing less than normal for him. We had less tears today than last week, so we consider today to be a success. He's starting to understand the process a bit and is slightly less frightened when nurses and doctors walk in the room. Tubey was a champ, and Elliot still considers him a friend!

We are grateful for such a wonderful day together. We are also grateful for Toni and Jake Brown. This week and last week, Toni picked up Julia from preschool along with her daughter, who happens to be Julia's best friend, and played all afternoon with her. This a gift Toni will never truly understand. Knowing that Julia is happy and having fun provides a peace in our hearts all day long!

To add to our blessings, a couple of wonderful students of mine (Adrienne and Lyndsey) started a fundraiser for our family. They are selling "Team Elliot" bracelets. The wisdom and compassion of my students, across the board, never ceases to amaze me. I am grateful.

I clearly haven't mentioned all of the blessings that have come our way this week, but we are truly feeling the love. I told my dad earlier this week, "I feel like God is front-loading us with blessings in order to give us the drive and strength we need to get us through the next 6-9 months". 

Thank you to everyone who has donated money to help with medical expenses, those who have brought meals, those who have spent time with Julia, those who have brought fire wood and encouraged my husband, those who have hugged us, those who have sent cards and gifts, those who have supported us in other ways financially and last but not least, those who have prayed without ceasing. THANK YOU! May blessings shower upon you all in ways you never expected.

Some pictures from toady at May of our strong little man...

Checking out the view

In between appointments...trying to fill the time!

Watching Frozen in the waiting room

Brave little man getting chemo...