Holiday DETOUR

*** Okay so I have to explain why this entry starts off with Ron and finishes with me. I constantly ask Ron if he can write an update about Staussen medical condition details and such (since I think he does a much better job :)). We get lot's of questions about details and so I would like to have it written down (for our sake to look back on) and for others who are interested in updates. Last night we were going to work on posting an update, but life happens and that never happened. Anyways at church today in sacrament meeting during announcements Bishop welcomed us back (since we were in utah at primary childrens hospital) and said to refer to our blog for more information on details... I looked at Ron and asked him if he asked Bishop to refer people to the blog? He smiled yes, then I asked him if he wrote an update (thinking maybe he did and I didn't realize it). We both have been kinda behind on everything it feels like. 

Since we didn't feel comfortable having Staussen stay at all three hours of church, Ron dropped me off and now both the kids are finally asleep so I'm just going to finish the update.

December 31:

An update has been needed for a while. We were in Utah for Russell’s wedding but scheduled to return to Virginia on Christmas day since Staussen had a scheduled chemo session the day after Christmas. Things were smooth with Staussen, health-wise, until the Monday before Christmas when he began to seem more clingy to Auna and me. We assumed it was because it was getting towards the end of the trip and his schedule had been off for a week; however, that was only partly true. His behavior was explained on Wednesday night when he came down with a fever.

It was Christmas Eve and all the relatives were coming to the house to celebrate Nanay’s 85th birthday. I was working on a surprise Jeopardy game about Nanay’s life when I felt Staussen’s skin was warm. I assumed it was because he had just recently removed his jacket. About 30 minutes later, Auna brought him to me because he was acting very fussy. Auna felt that he was warm, too, and so did our cousin, Niko. After feeling him again, it was obvious that he had an elevated temperature. We took it officially--101.6F. We took another one a few minutes later--101.0F.

Suddenly, Christmas Eve plans changed.

After talking with his primary oncology team in Maryland, we went to the Utah Valley Regional Medical Center emergency room. Good thing we had all the equipment necessary to access his port. A pediatric ICU doctor came to the emergency room to access Staussen’s port. Not to be harsh, but he wasn’t very experienced. He placed the needle three times into Staussen’s port before he was finally able to draw his blood. I had to request a tegaderm patch to secure the port because I didn’t see that one was ready to be placed. Even though we had put emla cream over his port, Staussen was still crying.

We were finally admitted to the pediatric ward around 10pm. On Staussen’s bed was a Simba pillow and a couple of wrapped presents. How thoughtful!

My parents and siblings came over to visit a little after midnight.

**** Okay now I (Auna) am writing the rest.... Sorry it won't be as technical and detailed as Ron. Maybe he will be able to contribute more details later.

When we first got to the ER and they finally drew his blood and we heard the results we were amazed that his counts were low across the board (just like when he first got diagnosed). So we had to give him a blood transfusion.

It was an interesting feeling being at the hospital Christmas Eve. But for the situation, it really was nice as far as the staff and atmosphere goes! We really loved the nurses and they were very generous!

When we first got released from the hospital the doctors told us that that would be the longest time we would spend at the hospital. They said occasionally we might have to spend a night or two there if he gets a fever or depending on occasional treatments that would make him stay a few nights. So even though we were not thrilled about being at the hospital Christmas eve/day we were expecting for Staussen to recover soon and be leaving.

I guess when the doctors said that they forgot that staussen likes to be atypical in many medical scenrios so far. So he proved this once again (in not really a great way this time). The day after Christmas a doctor came in and said that she had bad news to tell us. Ummm, okay I'm holding my breath what could it be? She said that in the blood culture (from christmas eve) they found an infection in his blood. They recommended going to primary children's hospital to remove his port and receiving the rest of his care over there.

A few hours later we were driving in an ambulance to primary childrens hospital... It wasn't with sirens or anything though. He was just in the ambulance in case something came up on the way. I was kinda confused for a while if this was an emergency or something less that just needed somewhat prompt attention. Depending on how much was in his body and how fast it was growing it could have been an emergency but we just didn't know and they said things could change quickly. But for the time being his vitals were looking decent and he seemed okay.

Once we got to primary children's hospital everyone seemed really chill when we arrived. So I was assuming they weren't overly worried. They said they were going to draw his blood and do another blood culture just to MAKE SURE it really is a yeast infection in his blood and not a contaminant. They are not super anxious to take out his port unless it really is necessary. Also since his vitals were okay they were just going to wait.

The next several days were just hanging out in his small hotel room. He was on isolation because he had a fever and basically 0 immune system. His fever would persist on and off for several days. He also was developing a pretty crazy rash all over his body. His immune system was just not making any progress and so the doctors finally decided to give him a shot (sorry I don't know the name) that helps give it a boost. Several days of giving him that shot once a day his ANC started getting a lot higher! At day 5 at primary childrens hospital staussen was without a fever for longer than 24 hours and his blood culture was still negative for a yeast infection. So we were starting to get ready to go home... but then shortly before getting ready to leave we received news that the blood culture came back positive with the same infection as the one from christmas eve.

Okay the kids just woke up... I am a slow typer... Basically we had surgery the next day to remove his port and several days later he was stable enough to leave from the hospital. Hopefully Ron can get to filing in a few more details that I missed tonight.

CANCER IS SO LIMITED!!!!!!!!!!!!!!

Could this ever be more beautifully and eloquently said??? I came across this plaque the other day and obviously just LOVE IT! It's just amazing how much has been happening to our family the last two months. I am going to do a few more posts soon with pictures and what not soon. But I just needed to post this now cause it's been on my mind so much. We have had the blessing of meeting SO many amazing people. Just hearing glimpses of their stories is heartaching and humbling. Ya Staussen has cancer, it's been hard (and will be hard the next 3.5 years of treatement) and was obviously a shock when we found out. BUT it could be SO MUCH WORSE. There our kids/families we have met that have it so much harder than us. 

One single mother told me about her story. Her 13 year old daughter has a very rare and ugly cancer. She is recently divorced with 7 kids and with basically no support. As she was sharing more details with tears running down her face I couldn't hold back the tears either. I feel like crying as I'm writing this. My heart ached for her and her situation. We have the most common and treatable cancer. Her daughter is not so lucky to have that. We have so much love and support in many ways. She has hardly any at all. I hate feeling so helpless when I want to help more than I feel capable. 

I read this talk with her on my mind last night:  https://www.lds.org/general-conference/2014/10/are-we-not-all-beggars?cid=HPFR122614589&lang=eng

This gave me some comfort, direction and some ideas.

I really believe that all of us are going to be tested at times in our life more than we feel we can handle. That's of course how we get stronger. Sometimes I feel weak and pathetic thinking I can hardly handle my situations when I see other's that have it so much harder. But I am learning this is not the right way to think.  I can draw strength, perspective, and gain more humility and service when I see others that have it worse than me. I am learning though that I should NOT discount the own pain and trials I am facing and beat myself up about it. I am not trying to make excuses but I am learning that at least for myself that I need to accept my circumstances in order to handle them. This is HUGE for me. People that know me well (and how I am my own worst enemy) would probably agree that this is an important principle for me to remember and work on :). 

I feel so much love and gratitude for my patient, loving, wise, merciful and amazing Heavenly Father and His plan for me and all of us. For the the strength, love and for sweet forgiveness and healing I receive through the atonement of Jesus Christ. I feel so much gratitude for all the family and friends around us and for the continued prayers and support shown in countless ways in our behalf. 

Home SWEET home, induction is OVER and steroids are just NOT cool

This is a problem for me. I tend to overdo it or don't do it all... hence a very late blog post with way too many pictures and videos (which I really should have synthesized into highlights but that takes too much time and energy right now).

It's been SO NICE to be home. We have just so MANY amazing people in our life! In numerous ways people have reached out!!! So many wonderful thoughtful words, gifts, acts of service, prayers and love that we are extremely grateful for. It means more to us then people will ever know. I hope to be able to get back to every single person and adequately express my gratitude. However right now I feel so inadequate to do so with limited time, energy and emotional/intellectual capacity (so many logistics and priorities I'm struggling to juggle). I sincerely hope that every single person that has reached out to us in whatever form, that they know of our appreciation and love! We truly have felt strength beyond our own.

With that said though, I am not going to deny that this has been really hard. It is definitely a learning and growing time for us. This month of induction has been very rough on Staussen (and us). We refer to staussen's behavior as 'Steroid Staussen' and what gets us through the exhausting and draining moments is the fact that he will not always have intense steroids in his body. Induction is a 28 day cycle of intense treatment. The goal is to put Staussen in clinical remission (less then 1%) of leukemic cells in his body. These pictures and video's will give you a glimpse of what the steroids do, it's pretty crazy. Staussen has gained 11 pounds due to the steroids. And if you would be so kind to not judge us too harshly in some of the food we have fed him... they get intense cravings. I promise he has had healthy things too (he loves green smoothies, hummus and carrots). Any way's here a bunch of random pics and videos during this induction phase. 

This is a block of cheese... hence my face expression... it was also 3 am in the morning and he was desperate for "cheese and crackers"

This is a Steroid Staussen face. 

                                      

Staussen's medicine for induction.

One of the few times he wanted to walk (this was at the beginning of treatment) most of the month his bones were in too much pain. 

It came time to part with his beloved Dino pinata.

Getting ready to leave the hospital!

And this was only the beginning. 

This was only 1/3 of the things we brought from our room! We did two big loads before that. GOODBYE HOSPITAL, HELLO HOME :)!!!

My wonderful mother! Dropped everything to come help us for a month!!! She is a master cleaner/organizer. I'm so grateful for her!

Thank you so much to my amazing friends for the warm welcome and clean house :)!

I think being outside has been therapy for him. He often wants to be outside. Simba decided to come along.

Eating, eating and more eating! This really sums up the last month :). 

My wonderful Mother in law coming out to help and play with sweet Daisy!

SEE! Something healthy, he loves hummus. 

Before Staussen was diagnosed with cancer, him and his sister were two peas in a pod. Once treatment started he just kinda sank into his own miserable/depressed/emotional and painful world. BUT a FEW rare moments we saw glimpses of the Staussen we are use to. Staussen wanted to hold Daisy, it melted my heart. Especially since the last few weeks he has completely ignored her. 

THIS MADE MY MONTH! This was a very rare occurrence this month.

ya.....

Was about to fall asleep on the ground :)

Sorry these are not in perfect order... you can probably tell by how his weight looks. This is Staussen stuffing fries and a wendy's frosty in his mouth. 

This was a VERY COMMON face expression from Staussen during induction.

He probably should have the genius world record for a 2 year old eating the most cheese sticks in the world during a three week period. I'm not sure I want to reveal how many he ate.

Steroids can cause you to get extra sweaty... if you were wondering about his hair.

So great to have my mom here for daisy, so she could have extra love and attention :)! 

Okay so this was pretty classic, it would happen at all times of day or night.

I love my cubby cheeks boy :)

Ron is very tired of me taking pictures :). The kids obviously could care less.

I'm not sure why he is dressed like this ha ha... his position and face expression remind me of a zombie... a cute one :)

Got green smoothie?

Bruising/scarring from his port placement.

So at first he was obsessed with salsa and chips... then we ran out. But we had spaghetti sauce?? We asked him, he tried it and was hooked. Kinda gross :) but he loved it. 

He has been a BIG daddy's boy during this time!

He always did this. He didn't like it when I took pictures, recorded him, smiled, talked and tried to make him laugh. 

ANOTHER RARE AND WONDERFUL MOMENT of staussen smiling. :)

These pictures and videos I took for my sanity. I already tried everything I could think of to do so I recorded him for my sake to keep calm. So most people would agree that being two is a hard time of learning how to deal with emotions and all that... now add cancer treatment to the mix. Of course he had moments and tantrums before this happened but so many great happy ones too. Now it was  just whining, depression, desperate crying and OFTEN not knowing what he wants. The relentless consistency of it was very draining. We have been trying and learning to do our best at giving him comfort and love but also trying to set small but reasonable expectations/options for him. He will not always be sick with cancer and still needs to learn things, but this has made parenting even more complicated for us. Staussen has required a lot more energy and time then his 4 month old sister. It's the two year old keeping us up at all hours. So thank you Daisy for being an angel baby and not making this even harder :). And we love you too Staussen, I know all these things happening to your poor little/big body is super hard :(

About to CRACK a smile.... hold on to these MOMENTS :)

We love this little flower!

Family Home Evening FUN!

My awesome sister :)!

My talkative little princess

Classic moment. Dad studying while holding staussen. 

We went to the hospital this friday for a bone marrow procedure and lumbure puncture. It was a long day. I'll ask ron to give more medical details of all that. But I saw this chair and had to take a pic.

Listen to the nurses comments.. I love her, she is awesome!!! This is him coming out of the anesthesia... the nurse has worked here for 7 years and has never given the dosage she gave for Staussen. She said he had a really high tolerance. Also she has never seen a kid sit up and eat so soon after the procedure. She was amazed. 

Super BRAVE Simba came to the hospital to help Super brave Staussen out with all the prodding that needed to be done :(.