Last chemo treatment

Hello dear friends! I am so sorry that it has taken me so long to update you all in regards to Elliot's last chemo treatment. As many of you know, I started writing this blog first and foremost as a form of therapy for myself, and secondly as a way to keep everyone informed, and thirdly as a means of documentation for Elliot when he gets older. Well, lets just say this...the "therapy" part has become less necessary, so my writing has become less frequent. To that, I say THANK GOD!!!!!!! That's a good thing! :) Nonetheless, I haven't forgotten about all of you who care about us so deeply and want to keep updated on Elliot's current health. SO, lets get to it!

On April 7th, Elliot received his last treatment! He, of course, didn't understand the concept of it being his last one, but daddy and mommy sure did. I'm pretty sure we walked around with a smile painted on our faces ALL DAY!

Everything went as expected, and there weren't any surprises, which is always a plus! Instead of writing a ton about the day, I will take you for a "picture-walk", one that shows you a very typical chemo day for Elliot. Enjoy! :)

Some pictures are sad, but I will still share them anyway as I want Elliot to know all the details of what he conquered.

Another early chemo morning

Waiting...always lots of waiting

 Julia, the mother hen, trying to get Elliot to smile and stand still. :)

Accessing the port and blood work :(  Always the toughest part.

Check weight, height and blood pressure (Thankfully the only times he lost weight throughout this entire process was when he was hospitalized and couldn't eat due to surgery prep. Such a huge relief that he never had to have a feeding tube.)

Entertaining themselves as we wait to see the doctor

Elliot's favorite doctor, Dr. Warad

Receiving chemo

After deactivation of his port, which is another very sad moment, we hit the road smiling!

 AND...some ice cream to celebrate!

We scheduled Elliot's follow-up CT scan and blood work for April 29th, but unfortunately we had to reschedule the appointments due to our household being hit by the flu this past week. YUCK! We are now scheduled to do these appointments next Friday, May 8th. At that point, if everything looks good, we will schedule surgery to remove Elliot's port (AKA: tubey) and will return every three months for scans and blood work!

Needless to say, the Sundblad household is one of great joy these days! I have said it before, and I'll say it again, I have NEVER believed in the power of prayer as much as I do right now. THANK YOU FOR YOUR PRAYERS! We will never know just how many of you have prayed for us throughout this journey, but please know that we felt them each and every day. Please continue to pray that his health will continue to improve and that his immune system will be back to full strength even sooner than expected (one year). 

I will leave you with a facebook post that I put on my page earlier this month. It is an example of the love we have felt from the community that surrounds us and the immeasurable support that has kept us moving forward with gratitude! 

"Ball for Blad"...that was the title of the event. It was a fundraiser put on for Elliot and our family by some amazing Cedar Falls students and teachers. I have no words besides THANK YOU! So many colleagues and students gave up their Saturday night to support our family. Please know that we are grateful!

Elliot update

February 25, 2015

Greetings! Sorry for the long period of silence. Take that as a good sign...all is going great with Elliot. I guess we've been too busy having fun and have forgotten that so many of our dear friends would appreciate an update! :)

As of my last update, we had just completed radiation and were gearing up for another 9 weeks of chemo. However, at our chemo appointment on Tuesday, February 3rd, we were informed that his post-surgery chemo regimen would be once every three weeks rather than once a week. Obviously, we were pleasantly surprised and quite thrilled. Also, on that day, February 3rd, and yesterday, he received half the dose of chemo that he normally receives due to his recent completion of radiation and potential toxicity of putting too much chemo in his body within six weeks of completing radiation. All that said, the side-effects of the chemo have been minimal, and our little man has been much happier and has had more energy than during his pre-surgery chemo regimen. We feel like our fun-loving, silly, two-year-old boy is beginning to return after a long absence! It's so much fun!

If you're interested in seeing what I'm talking about, feel free to click on the following links. Recently, KWWL did a story on the two young ladies who have raised over $5000 for our family by selling TEAM ELLIOT bracelets. In the story, you'll see a happy little boy full of life, love and song!

(If you have trouble viewing these links on your phone, you may need to use a computer.)

https://www.facebook.com/video.php?v=360200840830670

(You may only be able to read this story on a phone. You may need to use a computer if you want to actually watch the video)
http://www.kwwl.com/story/28170471/2015/02/22/someone-you-should-know-lyndsey-bardal-adrienne-boettger#.VOq3aOn6Krs.facebook

https://www.facebook.com/simone.sundblad/posts/10155182876085123

As we look forward, the plan as we understand it, is to have two more chemo treatments, the last one being on April 7th. Three weeks later, on April 28th, Elliot will have another CT scan, lab work, and potentially some other tests to make sure all is well in his little body! A few weeks later, assuming he is doing well, we will schedule surgery to remove his port and will have a HUGE celebration as he turns three on May 15th. :)

Once again, a huge thanks to all who have contributed financially, brought us meals, helped with Julia, prayed for us diligently, and so much more. I've said time and time again throughout this journey how amazed I have been by the overwhelming goodness and generosity of others. We feel so incredibly loved and supported every single day!

Making Valentine Cards

Bringing mommy "breakfast" in bed

Pretending we're on the beach

Dr. Elliot

Elliot rings the bell!

We had a fantastic day of celebration. Today was Elliot's last day of radiation, and he finally got to ring the bell (he has been asking every day since we started)! We are grateful to have completed this phase of the journey! Now onto only nine more weeks of chemo. WE CAN DO THIS!

A family event!

Elliot's fan club as he enters radiation

Hugs of gratitude

On-demand, cheesy smile

Presents from the fan club

Ice cream celbration

Ringing the final bell

(video does not work on mobile devices...posted to my facebook for those on mobile devices)

Radiation update

Five down and two to go! Elliot and I made a trip to Mayo Monday-Friday last week for radiation, and all went well. We will finish up with another trip tomorrow (Monday) and our final trip on Tuesday. Thankfully, the process has been quite smooth with minimal side effects, and we've only had to make two trips by ourselves, thanks to some dear friends.

Needless to say, Elliot is so brave. I am amazed each morning when I wake him up bright and early for another road trip to Mayo, and he says, "Are we going to the doctor?". Of course I answer, "yes", and he simply says, "okay". Not a single complaint. He is truly my brave little hero.

I wish I could put into words what it's like sitting in a radiation waiting room. It has been way more emotional that I ever imagined. Each person there is either receiving radiation or supporting someone who is receiving radiation. Each one represents a different stage of life ranging from as young as Elliot all the way into one's 90's. Some are clearly receiving chemo and are worn down, and others appear to be in great health and couldn't be recognized as a cancer patient to the naked eye. Because radiation is given at the same time consecutive days Monday-Friday, many of these people have become nothing short of family to each other, and it is so evident how much they love and care for each other's well-being. They sit in the same spots each day, with the same people. They discuss their treatment, how they're feeling, their families, and almost always talk about how many treatments they have left. On the day each person's final radiation treatment, the patient rings a bell in the waiting room that hangs on the wall. Everyone in the waiting room claps, cheers, and gives hugs to the outgoing patient. This description doesn't do justice to the feelings in that room. Tears stream to everyone's faces, including my own as I sit there and wait for my son's treatment to finish. My heart is full of joy each time another person rings that bell and walks out of that room with a smile on their face. On Tuesday, that will be US! Elliot can't wait to ring the bell, and neither can I!!!!

Thanks again for all your prayers, notes, messages, financial donations, meals, hugs, and so much more. Please continue to pray as we complete radiation this week and continue with chemo next week and the following eight weeks after that. Thanks to all of your support, this journey has been much more tolerable than what it otherwise could have been!

In the waiting room on his first day of radiation

 Fast asleep on our way to Mayo

Nothing like a bloody nose in the car. He managed to stuff a piece of tissue up his nose and was pretty proud of himself.

Each day after radiation, they send us home with a hospital gown to wear the next day. Of course Julia gets one too!

Walking into treatment hand-in-hand!

Recovery update and upcoming treatments

Last time I updated you all, we were still in the hospital...just one short night from heading home. We were starting to see some progress and were hopeful for a smooth road to full recovery. Unfortunately, the road wasn't quite as smooth as we anticipated, but we made it this far, and I think we're FINALLY seeing glimpses of our spunky little boy again.

When we came home from the hospital, Elliot was still on some very strong pain medications which clearly have numerous side effects: constipation, tiredness, unawareness of surroundings, agitation, etc. Needless to say, we felt as though we were walking a tight rope...trying to keep him comfortable but also trying to cut back on his meds in order to eliminate some of the side effects. I had no idea it would be so difficult to balance everything...it was a complete guessing game. Though Elliot is a great communicator, and has been from an early age, he absolutely would not tell us anything about his pain. He denied any pain from the very beginning of the surgery recovery, and has been known to that prior to this whole experience as well. So, if he appeared uncomfortable, we had no idea if his incision hurt, if his tummy was uncomfortable from the constipation, if he simply didn't feel good from the medications, or if he was just frustrated that he couldn't do things that he was used to doing.

Not only was Elliot likely frustrated, we were as well. At the beginning of this past week, I felt as though I had reached an end to my strength and just wanted to be weak. I wanted to cry (and I did quite a bit). I wanted to acknowledge that this was hard. I wanted to feel sorry for myself. I wanted to stay in bed all day. I was just tired of being strong. So, at about 1:00 Monday afternoon, I called Dan and cried and told him how hard this was and that I didn't feel like I could hold up all day. In true Dan style...understanding, loving, supportive...he came home, told me to go lay down and nap with Elliot, and took care of Julia and everything else around the house. Elliot and I slept for THREE HOURS. I even slept right through my workout and woke up around dinner time. I felt like a new person...revived and ready!

On Tuesday, a friend came over and helped me out for the day. On Tuesday night, dinner was delivered by yet ANOTHER friend. On Wednesday, I was relieved for the afternoon when a friend picked up Julia and brought her to her house for the afternoon to play with her daughters, AND she brought two meals. On Thursday, my niece and her boyfriend came and played with the kids and kept me company.

Why do I tell you all these details? Because it's important to me to express how much your support means EVERY DAY! So many people tell us how strong we are...that they can't imagine going through something like this, but to be honest, we could never do it without our amazing support system. Please know that every single effort to support our family helps us get through each day with more peace and more hope. We are so grateful!

With all that said, God gave us light at the end of yet another long tunnel. Yesterday was a huge turning point around here. Elliot made it through the entire day without any medications other than Tylenol, and he was showing us his "old self"...silly, playful, and active. We rejoice in each and every moment that reminds us of the true spirit that lies beneath his pain and suffering. In those moments, we are assured that our little man will return in full force one day very soon.

As for now, we prepare for the next stage: post-surgery chemo (12 weeks) and radiation. We start chemo on Monday and radiation likely on Tuesday. We don't know specifics of radiation, but we're hoping for minimal treatments due to the amazing pathology report, which, God willing, would be around 6 radiation treatments total. Once radiation is complete, we feel that many of the unknowns will be out of the picture, and we have every intention of cruising through the remaining chemo weeks just as we did prior to surgery!

I will leave you with a video from this morning, one that hopefully puts a smile on your face and some peace regarding Elliot's current state of being!

(Video doesn't seem to play on smart phones or tablets for some reason...I've put the video on my Facebook page)

Surgery and Recovery update

First of all, I apologize that I haven't updated you all sooner, especially for those who are not on facebook to receive the brief updates there. Until now, it seemed to be too big of a task to tackle. My mind has been nowhere but with Elliot, and my heart has been very heavy the past few days as I watched my little boy struggle for comfort and peace. It has been an extremely rough few days since surgery, but I THINK we turned the corner towards recovery last night!!!!

Let me back up for those of you who haven't heard any updates since the last blog:

Most importantly, the surgery went GREAT! The tumor was completely sealed, thanks to the chemo treatments, and was easily removed without any spillage in the process along with the kidney as well. According to the naked eye, the surgeon didn't see any signs of active cancer in the surrounding tissue, the lymph nodes or any other organs. The right kidney appeared to be functioning perfectly, his heart looked great, and the adrenal gland was easily removed right along with the tumor and kidney. The post-surgery report was as good as it could possibly get! We clearly were extremely relieved and full of joy!

The surgeon informed us that the pathology report would take about 48 hours, so until then, we wouldn't know any specifics in regards to the histology being favorable or unfavorable, nor would we know if there were any microscopic cancer cells in the surrounding tissue or lymph nodes. Nonetheless, we still knew that regardless of the outcome, we would have treatment options that would likely be successful.

After meeting with the surgeon, we headed to the recovery room to see our sweet boy's face. Upon arrival, he heard our voices and quietly whispered in a fearful voice, "Mom?". My heart melted, my eyes filled with tears, and I put my cheek next to his. Poor boy was completely out of it...couldn't see our faces, rarely opened his eyes, and was obviously confused and scared. I hope I never witness such a sight again in my life.

Shortly after, we made our way up to our room, hand-in-hand with our sweet little man. Needless to say, he slept most of the day and night. He didn't fully wake up to the world around him until mid-day on Wednesday (the day after surgery). Once he woke up, the challenges began...nausea, vomiting, constipation, inability to urinate, abdominal pain, and so much more. I am aware that this is all in the realm of "normal" for such an invasive surgery, but after three days of what seemed to be minimal progress, we were emotionally and physically exhausted. I had "kept it together" until day three of cleaning up puke, changing sheets, sleepless nights for all, painful moans, etc. ect. ect. Finally on Friday, I struggled to hold back my tears (not in front of Elliot though). I started feeling like this was never going to change, no matter how many different medicines they tried or how many various "tricks" they pulled out of their hats to aid in each step of recovery. One step forward always seemed to lead to another step backwards. Everyone kept saying, "He's gonna turn the corner soon", but it didn't seem to be happening UNTIL last night (Friday).

After numerous times of forcing Elliot to get out of bed, take a few steps, ride in a wagon, ect., Elliot looked at me, pointed to the hallway and said, "I wanna go out there." Shocked, I immediately unplugged his IV pole, wrapped him up, got him in my arms, and pushed the pole into the hallway (Dan was out running errands, and I was afraid the opportunity would pass if I waited for his help). Just as I stepped into the hallway, I saw Dan walking towards our room. He quickly put his things in the room and helped me get Elliot into the wagon. To make a long story short, within an hour, Elliot was walking independently, was excited to play with toys, was talking in complete sentences, and was working on a bowel movement. YAY!!!!!! We were SHOCKED! Everyone was right...he was ready to turn a corner, but in true Elliot style, he did it in his own, abrupt fashion.

From the moment I spotted Elliot in the recovery room, I started anxiously anticipating the warmth of his amazing smile. Well, last night I knelt down next to him in the playroom, and said, "Elliot, can mommy see your big smile." He immediately gave me one of his cheesy smiles and continued playing. In that moment, I knew we were headed in the right direction and that everything was going to be okay.

To add to our joy, we also met with the oncologist yesterday and received news of a fantastic pathology report. The cancer has a favorable histology and there were no signs of any microscopic cancer cells anywhere. Praise God!

Philippians 4:6
Do not be anxious about anything, but in every situation, by prayer and petition, WITH THANKSGIVING, present your requests to God.

We are definitely in the "thanksgiving" stage. I will forever be grateful for my babies, regardless of the journey we need to take with them. I know in my heart God never wanted this for my baby boy, and I also know that His strength has carried us every step of the way. For that, I will be eternally grateful.

As for today, we are laying low, waiting for more bowel movements :) and enjoying our time together. If all goes well today, we will likely go home tomorrow and be reunited with our sweet Julia.

Again, thank you for your overwhelming support! We have felt loved each and every day because of all of you. We realize that we still have a long journey of recovery, radiation and chemo ahead of us, but we choose to rejoice in our blessings today and let tomorrow worry about itself.

We love you all!!!

Pics...in order of time:

Always wants to hold our hand

Cozy sleeping :)

Taking off bandage

Friday: finally walking and playing