I Cry a Lot

Seriously, I do. And at the most random times too. I have been trying to figure out when I would have the time to let my thoughts spew out onto this blog of mine. It is such a good therapy for me. And it is way past the time I should be in bed, but I just felt like writing tonight. Also, seriously, when I write late at night, I sound like a whacko. You have been given fair warning.

I saw a commercial on TV tonight while I was folding laundry. It showed a little girl, about 4 or 5, being treated for cancer at Primary Children's. I burst into tears as I watched her go through treatments, watched her mom hold her and rock her while she slept, and watched her dad shave his head when she lost all her hair. I sat there and wept bitterly. Even thought those people are just actors, I know how that mom and dad would have felt if they had been experiencing all of it for real. I never in a million trillion years thought I would be the one with a kid that has cancer. But I do. 

There is nothing that can ever prepare you for those words. There is nothing anyone can say or do that will make it go away or hurt less. There is nothing that gets you out of the "club". The club you never wanted to belong to, but you will forever have a lifelong membership in. The "My Kid Has or Had Cancer Club". Because even after all of the treatments are done, after your child has been deemed "cancer free", there is always that possibility. The possibility that it might come back someday.

I was talking to a dear friend tonight that I have never even met. We were chatting through messages on Facebook. Her child had the exact same kind of cancer that Magnus does. He just had his 5 year scan and is still cancer free. But we were discussing how the fear will never quite go away. I was telling her that I am a pessimist. I always have been, to varying degrees. I feel like I have lived my life with a pessimistic attitude so I can protect myself. I don't ever want to have the blow come so hard that I can't recover. I told her that the worst was not knowing. And yet, she was inspired to give me some amazing advice. She told me it was better not to know because it would prevent me from getting on my knees through this trial and turning to Him. If we knew the outcome to every trial we ever faced, why would we need Him at all? 

I feel at times as though Heavenly Father is so near to me that He might just be sitting right on the chair next to me. I truly cannot say enough how much my faith has grown from this experience, right at a time when I needed it the very most. Would I trade that for my son to have never had cancer? I honestly don't know, because that is an extremely hard question.  It is a sweet thing to have the knowledge that I do. It is a very sweet thing indeed to absolutely know without a doubt that my Heavenly Father loves me so very much and is absolutely aware of me. It is amazing to know that my Savior has been through this with me. Nobody but He knows exactly how I am feeling. I truly believe that. 

I also believe in temples and the spirit that is felt there and only there. I had a very personal and spiritual experience while I was in the temple just over a week ago.  It spoke so surely to my heart that there is no way I can ever deny it. I know that my family is a forever family and that we will all be together after this short,blink-of-an-eye life.

I just wanted to get some thoughts down tonight about how this journey has changed me. It is far from over and I am happy to have so many amazing people along for the ride. It is hard for me to accept service (is it easy for anyone??) but our family has been so incredibly blessed by so many. I am so thankful for amazing, inspired people who come at a time that couldn't have been more perfectly planned. And I am thankful for the never-ending support. It is so very appreciated. 

Thank you, thank you.

Magnus getting his nightly flushy-flush :)

The Day After

This post is looking back at Monday August 25th, the day after M's surgery.

This is what I saw first thing on Monday morning after Magnus' surgery:

They couldn't remove his breathing tube just yet because they had to take him for an MRI to make sure they had resected all of the tumor that they thought they had. Andy and I had slept in a room in the Ronald McDonald House on Sunday night and once my head hit that pillow, I literally did not budge until my alarm went off at 7 AM. Because the stress of the surgery from the day before was gone, I was a little giddy and silly on Monday morning. I was so happy to see my boy.

This is one of our favorite PICU nurses and doctors, Erin and Kristin. They were so funny and immediately felt like old friends. After M had his MRI, they were ready to get him extubated and wake him up.

Steve, the respirator therapist came in the remove the breathing tube. It was so interesting to watch (although it would have been better to see it on someone other than my own child...)

I loved watching everyone work on my baby. They just  all spoke to him very calmly and explained what they were doing right before they did it. It was all very smooth and coordinated. They removed his catheter, several IV's, his breathing tube, and some other wires and junk that I have no idea what they're used for.

 Shortly after everything was out, Magnus let out a big cough and slowly opened his eyes. I was right by his bedside and he looked up at me and whispered in his scratchy voice, "Where's your ipad? Can I play it?" I had to laugh at this because gratefully the last thing the kid remembered was playing my ipad in the ER, before any of this traumatizing stuff had happened to him. The doctors had told me he wouldn't remember any of it, but I was skeptical. And then I was relieved when I realized that they were right.

My grandma Darlene was the first one to come and see him. He smiled at her and waved goodbye when she left.

Just a little out of it.

Mag couldn't seem to get comfortable and was rolling and moving all over the place. It made me so nervous, I didn't know if he was supposed to be moving around like that. I finally started rubbing his back and singing to him and then he finally settled down.

He had so many visitors.

Uncle Travis

Grandma Claudia

Papa Rowley (okay, so this is actually our dear friend Paul's dad, but he's like a Papa)

Aunt Suzanne

Cutest little toes ever

After spending more than half of the day in the PICU, around 5 PM the doctors decided Magnus was ready to graduate to the Neuroscience Trauma Unit (NTU). Right after we got settled in our new room, Rachel  arrived with the rest of our kiddos.

Auntie Rachel

A little smile

 Magnus had a little trouble with vomiting, a fever, and keeping his oxygen levels up that evening. He was limited to clear liquids which he had no interest in.

Later that night Grandma and Grandpa Collette came by (and brought me Ben and Jerry's Phish Food.... they're the best!)

Magnus hated this cannula. He wore it for awhile and then absolutely refused to wear it any longer.

Papa Bry and Gma Claudia came by that night as well. 

 Look at my sweet daddy watching over my baby while he sleeps. I sure love him.

Magnus was flipping out over his IV. So the nurse wrapped it up. Andy felt left out and wrapped up his head. Twinners. 

Andy kept trying to play with Magnus. It was pretty hilarious. Magnus was just so tired and pretty out of it for most of the day/night.  That sure didn't keep Andy from trying.

Overall, I'd say the day was pretty darn great. I just kept feeling this overwhelming happiness that the surgery was over. I don't think I had realized how incredibly worried I had been the day before until I felt as light as air the next day. It was so nice to talk to M and see his eyes and watch him smile. 

I love love love that baby boy of mine.

A Little of This, A Little of That

Look at this adorable hat my friend Chris made. She sent one for each member of our family.

I have over 500 hospital photos to go through. When you're told by a doctor that your child has a brain tumor, possibly cancer, and you don't know his prognosis yet.... well, you take a lot of photos of that child. And then when you find out that he does indeed have cancer and find out his actual prognosis, you take even more. And that's what I did. I want to remember every little thing about our hospital stay. Which is why I am slightly annoyed at myself for not bucking up and blogging every night while we were there. I have a sort-of-kind-of-not-great record from instagram, but the "little details" aren't on there. If you haven't noticed, I am a definitely a "little details" type of person.

(Little, kind-of funny side note: When people call to tell us news and they get a hold of Andy, he asks them to call me. Because I will sit and ask him questions that I know he doesn't know the answer to and it drives him crazy and he'll say things like, "I didn't ask questions!" which to me is absurd, but what do you do? Also, we met with our radiology oncologist on Friday and after he explained everything he said, "Do you have questions?" And Andy said, "Nope" right as I started in on my 20 minutes of questioning. See? Funny. Haha)

That's kind of why I haven't been blogging. I am overwhelmed. Not necessarily by everything going on (because I am convinced that all of the prayers on our behalf are what are, in fact, keeping me sane and normal), but by the task of trying to remember everything, going through photos, and getting it all down. I know that the longer I wait the harder it will be, but I still don't do it. Eesh. Kind of a catch-22, yeah?

That's when I sit at my computer and ramble about who-knows-what. I entertain myself.

So, I'll just give a little update.

Magnus: Magnus is starting to get back to his old self. He is walking on his own again! This is huge to me. I walked into the kitchen yesterday and he followed me. I was so shocked. He hasn't walked without help since the surgery. Apparently he is getting stronger. Go figure. They told me it would happen, but I guess after 3 weeks and no progress, I just thought it would be awhile. He is still off balance and I worry he is going to fall, but he is doing it. Happy dance. His speech is also improving every day. I am just amazed at how far he has come in 3 weeks. He is happier since coming home. He is also incredibly emotional and laughs a lot when he's happy or cries and screams a lot when he's sad. It's like we're riding a roller coaster over here.... high highs and low lows. (See what I did there? 12th grade English class ain't got nothin' on me.) He still doesn't like our home health nurse, but he is doing much better with his picc line being flushed or having the dressing changed when Andy or I do it. I am just thrilled that my boy is smiling again on a normal basis.

Baron: Our Bear has not seemed to be affected much by all of this. The only thing I have noticed is that he is jealous of all the new toys that Magnus has received. Luckily Magnus is good at sharing so Bear has benefited. The two of them used to fight like crazy before the surgery and they fight like crazy now, soooo.... that is great news?! Just kidding, I really do wish they got along better, but I'll take any normalcy I can get ;)

Daphne: Daphne is my super-sensitive little gal. She has been there for Magnus at his every beck and call. She would do anything for that little brother of hers. And she does. She will read to him, play with him, color with him, get anything for him.... you get the idea. Daphne has been a little extra clingy lately, and professes her love for all of us on a daily basis. Hey, you don't hear me complaining. More hugs and words of affirmation from my baby girl are not something I complain about. She is a sweetie and I am so glad we have her in our family to help us through this time.

Jonah: Jonah has been great with Magnus. I mean, really great. He is ultra-attentive and will spend about an hour a day reading Magnus all of his new books. He entertains him and comforts him. It is very nice to watch. Jonah probably took the cancer-news the hardest. That was a rough night. Jo was pretty inconsolable and wept on my lap for a good 30 minutes after I told the kids. It broke my heart. Jonah has been stoic since then and has carried on with dignity. He has also been more loving and sensitive and again, I am not complaining. He has continued with school and soccer and friends as before but I have noticed that he is not as eager to leave and play as soon as he gets home from school. It's nice.

Laylah: Well, this girl.... what can I say? She has seemed the most normal and taken everything in stride. Of course she has expressed her concerns, but she has kept her head up through it all. She does what needs to be done, she helps when I ask, and she rarely complains about any of it. She gives the best hugs too, right when I need one. I say it often, but I really don't know what I did to deserve this little missy. She has carried on with grace and gets the job done. I am thankful for her.

Me: Hmmmm, me. It's easier to write about other people. But I suppose I'll give ya'll on update on how I'm doing. I am doing well, surprisingly enough. I can't tell you how much words of affirmation and gifts of service have helped calm my troubled soul. I always thought my love language lay in other areas but this experience has proven otherwise. Sometimes I have a moment where I feel incredibly grateful for this experience. I don't know what will happen in the future, and that's okay. I will always be grateful that I was able to rely more upon my Heavenly Father and feel peace in this trying time. It has been a gift, in a way. A soothing, wonderful, never-wished-for gift. But I am happy to have received it. It's not all wonderful. I have my moments. I feel crazy sometimes. But I feel as though my family has grown so close through all of this and I will be eternally grateful for that.

Andy: This guy. I sure love him. He is amazing with Magnus. It seems like right when my patience is gone, he swoops in and takes over with a fresh batch of patience for all. He has had his moments, which is fine. But overall, he has been the guy that I couldn't be more grateful to have by my side. We both came to the conclusion that we will take everything step by step, not look ahead or behind, and just keep moving forward. Our goal is to keep our family happy, close, and and loving. Our home is our safe-zone. Fears can be expressed, help can be given, peace can be felt. I love my husband and the ability he has to still make a joke and have everyone laughing. It has been good for me, especially in moments where all I feel like doing is sobbing.

So there you have it. A peek into the lives of the Collette's and how we are all coping. Life is pretty great, even when it's not. I need to remember that. Because it is hard, but it's not too hard. And

it is most definitely worth it.

Home Again, Home Again, Jiggity-Jig

Well, we are home! We got home last Thursday, in time to pick up the older four kiddos from school. It was the first time I have picked them up since school had started 2 weeks before. That definitely made me happy.

Over the past few days life has slowly started to get back to "normal". Well, at least a new "normal". I went back to work for the first time in 2 weeks yesterday. Andy goes back on Monday. After going to my classes on Friday, I felt an immense urge to drop them and felt like there was no way I could do school at this time in my life. I felt like I needed to just be available for my children and husband. So, after speaking with a counselor to make sure I wouldn't lose my financial aid, I dropped my classes. It will be so strange to not have school to worry about. Nice, but strange. Andy and I have been going to school for the last 4 semesters, and it has become a normal part of life for all of us. I thought I would feel nothing but relief once I dropped, but I feel a little bit of anxiety instead. I had a plan for getting into nursing school and my plan has been put off track. And, as stressful and busy as school can be sometimes, I have loved learning. I feel smarter than I have in years, haha :)

So now we start that new normal of doctor appointments, therapy visits, radiation therapy, and the like. Mine and Andy's classes/study time will be replaced with driving to various appointments for Magnus. This weeks alone we have 6 appointments scheduled. Therapy, neuro check-up, oncology visit, stitches removal, home health visit, and radiation consult.... I am enjoying this weekend before the storm hits.

Andy and I were able to go out on a date last night, thanks to my lovely sister watching our two little boys. The older three kids went to the Real Salt Lake soccer game; Daphne and Jonah with their soccer teams and Laylah with a friend. 

I couldn't help but think about when two weeks before we had been on a date and decided to go home and check on the kids. Instead of continuing on our date to go get ice cream, we ended up in the ER and staying at the hospital for nearly two weeks, our lives changed forever.

So last night, I finally got my ice cream. And it was delicious.

12 Days In

Today is the twelfth day Magnus has been in the hospital. On the one hand it feels like it has been forever. I feel like it's been so long that I don't even remember our normal home routine. On the other hand the days fly by with treatments, procedures, feedings, therapy, tests, and nurses and doctors coming in and out of our room all the live long day. I thought I would have plenty of time to do homework and keep this blog updated while staying in the hospital, but Andy and I are exhausted and every waking moment is spent trying to keep Magnus happy and occupied. 

I cannot wait to go home. But at the same time I'm scared for what will come next. Like I said, all we do is try to keep Magnus content. He needs help with everything. He can't even walk on his own yet. His motor skills were greatly affected by the surgery. But when we go home the next stage of this journey will begin. And i am not looking forward to having a little boy who is miserable and exhausted and sick all of the time because of radiation therapy.

Once we get home I want to update more on our stay. Magnus had another surgery yesterday because his drain just wasn't cutting it anymore and he needed something more permanent. Disappointing, but I am glad that something can be done at least. I am hoping (maybe it is a completely false hope, but I am trying for optimism here) that life will calm down just a bit. Andy dropped all of his classes this semester in an attempt to calm our life down a little. I have cut down to 2 days of work a week. The older 4 are in school and while Magnus is having his treatment every day for the next 6 weeks I will be able to study since he will be sedated. I have a hope that we will be blessed to feel the calm after the storm. 

I am so thankful for my testimony of my Savior, Jesus Christ. I have felt His calming presence so many times over the last few weeks. I would not have been able to get through this time without my faith. I am so thankful for wonderful, thoughtful people who don't ask and just do. It feels so good to know Magnus is loved and prayed for by hundreds. It feels so good to know our family is taken care of. Thank you, my friends.

The Longest Day of My Life

I finally added photos to this post. They are in chronological order starting with after they had taken Magnus for surgery when our children came to the hospital to see us.

Telling the kids about Magnus and learning about tumors

Trying out all of the gear that doctors and nurses wear

 When we came up to see him they were taking an x-ray to make sure the breathing tube was placed properly because M had tried to pull it out yet again.

 Nurse Beau... best nurse ever.

 Daddy and his boy

 Swollen little eyes and face

 They had to go in from two different locations because the tumor was so large and difficult to remove

 Jean and Matt

 I had been awake for way longer than anyone should be at this point

 I spy a sweet baby face

 Our home for the next couple weeks

It's been a crazy week, obviously. The days fly by here at the hospital with procedures and therapy and just making sure Magnus is happy and taken care of. I need to hurry and catch up on this here blog before I forget too much because the days are already running together.

So, we are to Sunday morning/early afternoon. They took my baby away and told us where we could wait. Because it was a Sunday and semi-emergent surgery, nobody else was in the OR waiting room. I loved it. No one was really even in the hospital besides doctors and nurses. Andy and his parents went into the waiting room and I decided to go for a walk around the hospital. Like I said, nobody was there. It was empty and quiet and perfect. I called and updated my mom so she could update everyone else. Andy's parents were keeping his side of the family in the loop. I found the Child/Life Specialist and spoke with her about talking to my other children and explaining what was going on in simpler terms. I had arranged for Rachel to bring them to the hospital before the surgery so they could see Magnus but they had moved his surgery up unexpectedly, so they didn't get to see him beforehand.

Rachel brought my 4 kiddos to the hospital a little bit later and it was so good to see them. I went and got them at the hospital entrance and led them to the OR waiting room where Rochelle (The CLS) met us. She had little cloth dolls dressed in hospital gowns that had blank faces so the kids could color them with markers. She also had a bag full of hospital stuff like hair caps, face masks, gloves, bandages, and other stuff. We explained in very simple terms what was wrong with Magnus and what was being done to fix it. We showed them the photos that we had taken beforehand of Magnus and explained what all the tubes and wires were for. We asked if they had questions and they didn't really say much. At one point Daphne had to go to the bathroom and I walked away from everyone with her to take her there. She looked up at me with very sad eyes and asked, "Is Magnus going to die?" I just about lost it but kept it together and told her that everybody dies sometimes and we would just have to see how Magnus was doing and we would find out more later. Kind of a crappy answer, but she seemed pacified, so I didn't press it.

After the kids talked to the CLS and were tired of coloring their dolls, Rachel and I took them up to the playroom. I left them there since Rachel was going to take them home afterwards. Rachel gave me a big hug before I walked out and I started crying again. I said goodbye to my cute kiddos who were already enthralled in the things they were playing with and I walked slowly back down to the OR waiting room.

The doctor had told us that he would call in updates every couple hours. When I got back Andy was sleeping in one of the rooms off of the waiting room and his parents told me the nurse had called. She said that they had just started the surgery about 20 minutes before and they had already given him a blood transfusion, but that he was doing well. I was hoping to get away without a blood transfusion, but apparently that wasn't going to be the case.

I took some pillows and went into another quiet, dark room and tried to sleep. I just lay there, wishing for sleep to come (it had been about 32 hours since I had slept (minus a short nap I had taken during the day on Saturday) and I was just beyond the point of tired by now) but it didn't happen. Every time I closed my eyes I just imagined Magnus on the operating room table with the back of his head cut open and it made it impossible for me to even feel tired.

After about an hour of wishing for sleep to come I got up and went out to where Andy's parents were. We started talking and it was nice because the time passed a little more quickly. Another phone call came from the nurse and she said they had just reached the tumor and sent a piece off to pathology for a biopsy. They had to give Magnus another blood transfusion, but he was still doing really well. Other people came in to see us... the hospital chaplain, a social worker, and others. I didn't really feel like talking and they didn't stay too long.

Nurse Beau came down to the OR waiting room and brought us a soda. He sat and chatted with us. Did I mention how much I loved him? Because he was the best. Andy woke up a little later and joined us and we passed the time by talking and talking and talking about whatever. Finally it had been about 5 1/2 hours and the update phone rang again. It was the nurse saying that they were just cleaning up and making sure everything was okay inside M's head and then they would close Magnus up. She said he was doing really well and while it was a very difficult surgery, they had gotten as much of the tumor as they possibly could without damaging Magnus' brain. She said it would be about another hour and then the surgeon would be in tot talk with us.

We decided we better grab a bite to eat since we wouldn't want to leave him once he was back in the PICU. I was slightly relieved but wouldn't be completely relieved until I saw my boy again. We headed out and grabbed some Rubio's and came back to the waiting room to eat it. We had just settled in and started eating when the surgeon walked into the room.

Dr. Brockmeyer looked exhausted and a little down. He explained how the surgery had gone. He said on a scale of 1 to 10 (10 being the most difficult) it was a 10. It was one of the hardest resections he had ever done (hence the reason the surgery took nearly 7 hours). He told us that he removed about 90% of the tumor, but that there was a tiny nub that was so attached to the brain stem that he didn't dare touch it for fear of damaging Magnus beyond repair. He went over how Magnus had done (fabulously) and he would come talk with us more in the morning after they did the follow-up MRI to make sure they removed all that they thought they had.

Relief filled me at that point and I could finally eat without feeling like I was choking down sawdust. My food tasted so good. I was starving at that point, having hardly eaten anything since the night before. The doctor had told us he would be in recovery for a little while and then we could head back up to the PICU to see him.

We went up after we ate and he had just arrived in our room. He looked so swollen, but so beautiful. He still had marks on his face from being facedown for so long. I just wanted to hold him so much that my arms ached. I settled for tickling his arm and touching his face. I was just so happy that the surgery was over.

Andy's parents left shortly after that and Andy and I just settled down to stare at our child sleeping peacefully.... well, as peacefully as you can with an 8 inch incision on the back of your head/neck, a breathing tube down your throat, IV's in every limb of your body (including neck), and a foley cath up your you-know-what. He was just so beautiful.

Around 7 my dear, dear friend from Virginia arrived for a visit. Jean had just arrived in Utah to bring her son to BYU and when she walked in we both just started crying. It was so great to see her, and Matt (her son). He had left on his mission right before we moved back to Utah, and it was so wonderful to chat and catch-up with them. They were our family out east and I love them dearly. Magnus was a little bit like her surrogate grandson, since her grandbabies lived far away. She used to babysit him and take care of him at church when I was teaching primary.

After our visitors had to go, Andy and I packed up and said goodbye to Magnus for the night. We had to run home and shower (we had been wearing the same clothes for going on 36.... 37.... 38 hours?) and pack up for our stay at the hospital, then we would be back. As we walked out of the hospital around 10 PM, we lamented how incredibly weird it was that we had only arrived 24 hours before, completely oblivious that our life was about to change forever. How had it only been one day?! It had been the longest day of my entire life. I was relieved that it was finally over.