The Other Side of the Rainbow

This is the Israel Kamakawiwo Ole version. It should be playing now. I want those who have not heard this version to experience it and those who have to enjoy it again. I heard it today and for the first time listened to the lyrics. I feel like we are approaching the other side of the rainbow and I wanted you all to read these lyrics. Feel them. Wish for them in your life. Look to the other side of the rainbow.
Somewhere over the rainbow
Way up high
And the dreams that you dreamed of Once in a lullaby
Somewhere over the rainbow
Blue birds fly
And the dreams that you dreamed of
Dreams really do come true ooh oooohSomeday I'll wish upon a star
Wake up where the clouds are far behind me ee ee eeh
Where trouble melts like lemon drops
High above the chimney tops thats where you'll find me ohSomewhere over the rainbow bluebirds fly
And the dream that you dare to,why, oh why can't I? i iiii

Well I see trees of green and
Red roses too,
I'll watch them bloom for me and you
And I think to myselfWhat a wonderful world
Well I see skies of blue and I see clouds of white
And the brightness of day
I like the dark and I think to myself
What a wonderful world
The colors of the rainbow so pretty in the sky
Are also on the faces of people passing by
I see friends shaking handsSaying, "How do you do?"
They're really saying, I...I love you
I hear babies cry and I watch them grow,
They'll learn much moreThan we'll know
And I think to myself
What a wonderful world (w)oohoorld
Someday I'll wish upon a star,
Wake up where the clouds are far behind me
Where trouble melts like lemon drops
High above the chimney top that's where you'll find me
Oh, Somewhere over the rainbow way up high
And the dream that you dare to, why, oh why can't I? I hiii ?

So we just got back the video our friend put together from Spencer's fundraiser, ironically, we were looking through pictures of the beginning of this journey. Man. It is still amazing to me to think about all the support we get from everyone, even strangers. It is seriously overwhelming. I wish you could see this video. Click HERE for the Fundraiser blog post. I wish that you all who were not able to experience this fundraiser could fathom the intensity of it. All of the hours and brain work put into this for our family. For us, for Spencer. Although it seems so long ago lots of emotions and memories came rushing back. Spencer had been very ill. Very, very sick. It was our first sick stay and it was horrible. I did not know if my baby was going to make it out alive. The reality of cancer, of chemo and it's effects became ours. There were many agonizing nights, lots of prayers and many tears on my part shed. He was not able to make it to the fundraiser and I had to leave him at the hospital screaming that it was not fair, that he NEEDED to be there. I screamed and I cried and I pounded the steering wheel the whole way there. I felt an urgency to get there. It took watching the video to remember and even see for the first time what happened when I first arrived. I turned onto the street where the church was and all I saw were lines and lines of cars. Friends were acting as parking attendants and I could not help but cry. I was in shock. These people, all of these people were here for us. I walked in and was overwhelmed and I broke down. I couldn't help it. The Jazz Bear came up to me and kissed my head and gave me a hug, I believe he was sincerely caring. He knew how much Spencer wanted to be there. I had been agonizing over leaving Spencer but knew I needed to be there. MY friends did this for us and I needed to be there. I thought I was in shock when I saw all of the events going on outside until I walked inside to see the silent auction. Hundreds of people crowded around bidding on items to help our family out. It took me weeks to recover from the overwhelming emotion of tangible love that we felt that day. I wish that I was able to personally thank each one of you who were there. It touches my heart so very deeply to think about that day. I do indeed Well I see skies of blue and I see clouds of white
And the brightness of day I like the dark and I think to myself What a wonderful world. I wish upon the stars every night and know that soon we will wake up to the clouds far behind us.

We have come a long way from the scared little boy waiting for his fate, not knowing what his life is going to bring him to a confident bald kid, with faith bigger than the universe who has gone through surgeries, chemo, radiation, pokes, and near death experiences. We are thankful for our trials and and our blessings (although thinking of it all kind of makes me sick to my stomach).

Pumpkin, Pals, Parties, and Pirates!

Every year we go to Pumpkinland in Orem. It is in a fun little farm that has a corn maze, pumpkin patch, petting zoo, playground, etc. It is just so much fun. We decided we would make a day of it and celebrate Isabelle's birthday and got to Pirate Island afterwards.

Is he not just the cutest ever?!
Spencer and Betsy sitting in a....corn maze. The Sunflowers were gigantic!
He used to be so good at posing for me. No longer. But he is dang cute.
Friends and pumpkins. Notice Belle getting kissed by both Ryan and Ben, hmmmm.
Ben and Belle have the same birthday. Same day, same year. They call eachother twins. They are very best friends. They both thought it would be fun to celebrate at Pirate Island.



When my sister, Casy, came into town, we decided to have a girls night and hit up Madeleines Bakery and Hatch Family Chocolates! Deeelish!
Another celebration for Isabelle's birthday. This time with the Gooch family.

Nate was out of town on her actual birthday so we celebrated with cousins and pumpkin carving. She asked for lasagna for dinner. It was a super fun night. For some reason I did not get a picture of her with her brand new bike. It may have been because Spence barfed his feeding tube up that morning and we were a little pre-0ccupied. Fortunately, the tube has not gone back in!

My friend and her daughter made this AWESOME cake for Isabelle for her birthday! We celebrated with it when daddy got home!

Lot of Pictures Coming Your Way

Okay so I am working on blogging the 400 pictures from October to now that I have not been able to post. I found my camera but I am now having technical difficulties transferring pictures to my computer. They are not cooperating. I have a handful of them that I will start with and then try to fix the problem with the other ones. This is my pre-cautionary blog. If you do not want to look at a whole bunch of pictures over the last few month then don't check out the next like 10 blogs or so. Ha ha ha!

Grateful

There are many things to be thankful for. Today I will list a few of the most important. I am thankful for our health. I am thankful for our health insurance. I am thankful for modern medicine. I am thankful for faith. I am thankful for my beautiful family. I am thankful for all of you. I am thankful to live in a country where there is freedom of religion. I am thankful for wonderful nurses and doctors. I am thankful for our garage and our warm coats, gloves and hats. I am thankful for my sight, that I am able to see my beautiful family and the beautiful snow covered mountains around me and the beautiful ocean when I get to go home. I feel most grateful this year for all that my Heavenly Father has given me, and I am thankful for the trials that have helped me recognize all that I truly have. Thank you for being a part of my life.

Reluctant?

So...If you have not had a chance to look at Facebook or do not have a Facebook account or are not currently a Facebook friend (I would love to add you if you are not) then the results are in....kind of. After a full day of trying to patiently wait we headed back up to clinic to talk to our doctor about the results of the MRI and the bone scan. The bone scan is just what I imagined it to be showing no other spots of malignancy throughout his bones. When he was originally diagnosed he had several suspicious spots which are now gone. His MRI was the big one. It would tell us if the tumor is still there and the size and such. She let us know that the mass is still there BUT she is pretty confident that it is not a malignant tumor and now just scar tissue. The report suspected the mass to be post therapeutic meaning post chemo treatment, which obviously we are not at. So I assumed this is good. She informed us that a lot of times the mass never goes away. It turns into scar tissue and can remain there permanently. We will follow up in a couple of weeks with a PET scan which will tell us if there is any malignant activity. According to the report of the last scan there was minimal to no malignant activity. She was very positive about the results and said he is doing very well. I have to say I was kind of on the fence about my feelings about this report. I work, or worked in the medical field, I have been going to school for nursing and I just NEED to know all the details. I am a NOW person and this experience has kind of helped me to be a little more patient! On my way home I was reflecting on this result and my feelings and I got a text from a great friend who just always knows what I am thinking. Her text said "are you happy or reluctant?" Dang she nailed me! At that moment though my reluctancy had turned to happiness. I decided that there could not have been more faith and prayers pushing for our family today. I would have loved to hear that there was no mass at all but then I decided there is a reason for the mass to still be there. I don't know if it will play a part in his life somehow or if its there to make his pupils permanently uneven and googly, which he really would like to happen, funny guy. Whatever the case, there is a reason that it is still there. I am not disappointed. More than anything I want the malignancy to be gone and it sounds like we have reached that point. I also think the Lord is tortuously teaching me patience. I have to be patient until the PET scan. I feel that things are where we have wanted them to be. As I was reflecting and pondering I realized the tumor has never been my fear. It's like I always knew it would resolve itself. It's the chemo that has always been the monster for me. Although it is the main player in the destruction of the tumor it also is more commonly the reason for complications and death in a treatment plan. So....No Ally I am not reluctant. I am happy to be where we are, to be close to the end. I am so thankful to you all for your love for us, for your faith, for your tears, for your prayers. You all mean so much to me and I honestly hope to meet every single one of you. I am blessed to have you in my life.

Waiting Room

Have you ever heard the term "burning in the bosom"? That is how I feel today as I sit here in the waiting room. Is this an overwhelming feeling of faith overcoming me? Maybe partially but I want you to know that I KNOW that these are your tangible prayers. It has brought me to tears. I can feel them, quite literally. It is amazing that even though I am sitting alone in a cold, sterile hospital room I can feel you, your faith, and your love surrounding me at this moment. Thank you for being with me. We were so lucky to be greeted with familiar faces here in imaging. Our favorite nurse from the Riverton happened to be working here at PCMC today. Shortly after we arrived an old friend from church, who moved away a few years ago and is also a nurse, stopped in to say hello. And shortly after she came in one of our favorite nurses, Starla, came to say hi. It has been a day of comfort and support. Thank you all. We love you so much and will keep you updated.

Immense Faith

Deep breath in. We fasted all day today in preparation for Spencer's scans tomorrow. As we were running some errands he says "I can't wait for my scans tomorrow to tell me that I don't have a tumor anymore". Deep breath holding. Wow. What am I supposed to say to that. Logic would say that I tell him "well honey that might not really happen" but my heart and my faith interrupts and tells me to listen to my sweet little boy so filled immense faith. Where is my immense faith? What makes him so different? I want so very badly to have this kind of faith. I wish I could say to him "I know, me too!" After dinner we were all sitting together on the sofa and I was telling Nate what Spence had said and he looked at Nate and said , "I know I am not going to have a tumor." Still holding breath. Nate asked him how he knew and he replied "I just have enough faith". I pray and beg that his faith is so strong and so pure to see these miracles. That he can one day teach others through these amazing miracles happening in his life. His MRI is early in the morning, and that will tell us the size of the tumor. We should have those results before we leave the hospital, and then maybe I can let this deep breath out.

I NEED You!

I need your faith. On Thursday Spencer is having a big evaluation. It has been five months since the last one and the next one is his last day of treatment, hopefully. I am really putting myself out there by telling you that I am really hoping for a miracle. I don't know if I singly have the faith to make this happen. That is why I need the faith of all of you, our friends and family. Tomorrow we are going to have a fast. If you are not religious and do not believe in fasting, then please share all of the positive energy you have for our family tomorrow. We should have results soon after the scans and I am soooo hoping that there really is not much to see. We would love to be done with this mess as soon as we possibly can and I do not know how much more energy we have to spend if we have to continue treatment. We are so thankful for all of you and the prayers and faith you send and use for our family.

Do Not Take For Granted...

I have SOOOO much cleaning and organizing to do today but I wanted to take a few minutes to write down some things on my mind. My biggest point today is not taking little things, and big things for granted. I got in the car today to take Isabelle to school and it made me so happy to do this little thing. I know sometimes in the hustle and bustle of life taking our kids to school and picking them up can be annoying and monotonous. Don't take it for granted. I love being able to see Belle get into school everyday and I love seeing her smiling face when I pick her up. This is a luxury I have not been able to enjoy much this year. Another "big thing" I have been thinking about a lot lately is my husband. DON'T TAKE YOUR HUSBANDS FOR GRANTED. Every marriage begins with hopes and dreams of lasting for eternity. It takes two people to make it last that long. My husband does so much for our family and so much for me that the little flaws don't matter anymore. We all have our flaws but I feel so lucky to be blessed with a husband who loves me and a beautiful family. Not everyone gets to enjoy these blessings in life. Another thing to not take for granted is the time you get to clean your house! Mine is now a disaster because I have not been there to clean it! I am excited to be able to have the time but also overwhelmed by all that I need to do! These were just a few things on my mind. I have a bunch of pictures to blog but sadly, my laptop has died, so I have not had the opportunity to upload pictures. I will try to work on that this week!

Lucky Me

I know I blog often about friends but I am so blessed that I can never stop being grateful. I feel that I am the luckiest girl I know to be so rich in friends. In good friends. In loyal friends. Today I was able to visit with an old friend that I have not seen in probably ten years. We worked together when I first moved to Utah and have tried to keep some kind of contact throughout the years. Thankfully because of email and Facebook we have been able to keep in better connection with one another and today were able to reunite. She is a woman who has also faced challenges and sorrow in her life and has made the best of it. It was so fun to see her. I had close friends keeping me company online by chatting and then was able to visit with a new friend in the evening. It was so fun to have her visit to get to know her better. I am a lucky woman. Even later in the evening, maybe even early into the morning (I splurged on diet Dr. Pepper yesterday so sleep didn't come early) my wonderful cousin in California kept me company as we texted back and forth about a British chick flick I was watching. It is nice to always have company in some way or another. The previous night Gramma Cindy was able to stop in and our FABULOUS friends brought me dinner. Once again I say, how lucky I am to have so many people to love!
The next morning....
Temperature is totally down to normal and his ANC is back up to .700 (700). I am hoping that if he stays fever free (which I am confident of now that his ANC is rising) that he will be able to go sometime tomorrow, however, they may wait until Sunday to be extra cautious! Today is going to be a good day! I will be able to see Nate for a moment. All of the moments in passing have maybe added up to a full 15 minutes that I have seen him in the last couple of weeks. We are close to the end of these hospital stays and then maybe we can be almost normal again. I cannot wait!

Fragile

Today in the elevator was a fragile little boy sitting in his wheelchair. He had a N95 mask on that was too big for his face. He was hunched over and bald and his head was lowered. He was being pumped full of antibiotics and fluids and he just looked so sick . His little body could have brought anyone to tears. As a took a step back, it almost brought me to tears, and then I realized this little boy was my son. Even 9 months later I wonder how we got here. It is hard for me when is completely strong and sarcastic and the next moment he is so beaten down by chemo. Currently, things are a blur. I haven't slept, my back hurts from the joke of a bed I sleep in and I want to cuddle my other babies too. It is always so hard to kiss them goodby when I know I will most likely be gone all week from them. I miss my husband. Between out of town business trips and back and forth stays in the hospital we haven't seen eachother for a month or so, just in passing. How is that good for anyone? Gavin was 9 months old when Spence was diagnosed and it has been 9 months since diagnosis. Half of his life he has been dragged back and forth and he has spent days apart from me. This has been such a drag through the mud, run over by a hundred Mack Trucks kind of year.
I am going to move on from my sadness and get frustrated and mad for a minute. Bear with me. Spencers fever is not going down or away. It is not fair. It just really sucks, for a better lack of words, to have one thing after another go wrong. He is not in as much physical pain as he was last time but he has horrible mucositis (mouth sores that can go from the mouth all the way down to the bum). Usually they stay in his mouth but this time they are going all the way down, impeding his eating. He had a standard ct scan today. After 5 days of a high fever they need to make sure that the brain is functioning properly. Well the ct scan showed abnormal impaction in his sinuses. Because he has no white blood count they are very concerned about a fungal infection and decided that he would have to go in for an immediate if not emergent nasal biopsy. We had this happen last time on a not so immediate but precautionary measure and found nothing but this time it will be a little more invasive. This is going to give us a handful of more days in this place. I am sooo thankful to have the healthcare we need to keep him healthy but I want to be home. I want all of us to be home. {Deep breath, we only have 3 months left of inpatient hospital stays}. it is hard to keep positive when you are so tired and so sad from watching your baby cry because of all the crappy procedures and poking and prodding. This is not a glamorous life.
An hour or so later....
Deep breath out. Our beloved ENT Dr. Grimmer, came in to do a quick and shallow scope of his sinus. He assured us that it is not a fungal infection and a nasal biopsy is not needed. He diagnosed him with a regular, normal sinus infection, which all of us in the family have been suffering from, and said it will just take a little longer than normal to recover since he has a zero ANC. So I am wrong to say that things keep going wrong because this is all right for the moment. I will not jinx us. Also, Dr. Fluchel, the attending here this week, and our oncologist had a good talk with us too. He thinks he is doing well considering and is guessing that we will most likely have to reschedule his next chemo but reassured us we wouldn't have to be here for Thanksgiving. Phew. Today I have a headache and am ready for a good sleep in a good bed.

Sad Face

"Mom (said in a sad, groggy voice) mom, I feel really miserable". I thought this was sad until a few minutes later he starts crying and I ask him what is wrong and he again replies "I just feel so miserable, and I miss Sammy". Sammy is his stuffed polar bear that he has had since he was 4. He was misplaced in the last hospital stay and I was not able to find him before this last trip. He is sobbing because he doesn't have him. So many things that I cannot do for him, things that I cannot control. Let's all pray tonight that Sammy will be found. He is just so sad. He told me that even the funniest commercial (random) wouldn't make him happy. That is how sad he is. He still has fevers and I am crossing my fingers that his counts will start coming up tomorrow and that his fever goes away. It has been five full days here. I want to go. I want to cuddle with Nate and my babes, at home.

Life Is Beautiful

Today I had a "moment". It has been awhile since I had a good cry. I have been going, going, going non-stop. Driving to my inlaws for dinner tonight, gave me a little time to breathe and think and I just had to let it all out. It's easy to be in survival mode when you are too busy to think. I think I make myself busy on purpose, subconsciously. I was dragging my feet to come back to the hospital. I have so much I wish I could be doing at home and I just don't want to be here. I am indifferent about this stay. I am not super frustrated because the end is in sight, but I just want to be home. It is Fall. Winter is approaching and we should all be at home snuggled up in blankets watching television and making candy cane hot chocolate. So in my "moment" I began to reflect on how beautiful life is. In front of me were these majestic mountains, the tops being filled with a pink light from the setting sun. It was so incredibly beautiful. Every day, especially as winter hits for the eleven years that I have lived here in Utah I have daydreamed about living in California again. This year is different. I have noticed that I have become quite content living here and have enjoyed watching the seasons change. I only realized this contentment today. I am not quite sure when it began but I believe it is from my new perspective on life. I decided that life is beautiful. Life is full of beautiful people. The mountains are beautiful. The changing leaves are beautiful. My children, my family, my friends are beautiful. There are just too many beautiful things in this life to worry about the bad. Birth, and death, the changing seasons, beauty all around us. I also realized how lucky I am to know such great happiness. I think that when we have felt such heart wrenching pain we appreciate joy so much more. How lucky I am to know such joy. I still miss my beloved ocean but I am finally learning to appreciate the now. I have decided to bring the ocean to me and have been redecorating my house to a "beach cottage". It makes me happy. My life is beautiful.

Abundance

I know it is late. I am extremely tired but I feel like I would be totally ungrateful if I did not mention a handful of things in my heart. Things that need to be blogged. First off, I am sooooooooooo thankful for my girlfriends. I have been abundantly blessed with incredible friends. Friends who you can laugh with, cry with, stay up late with. Friends who listen and friends who do not judge. One of the many blessings I received when marrying Nate was wonderful friends. All of Nate's best friends from high school and college ended up marrying exceptional woman and I love them all so deeply. We were able to get together for a girls night tonight. After dinner four of us were able to talk and laugh and cry. It has always been like that for us. I think we were friends long before this life and it feels so comfortable, so refreshing to be with them. Every single one of these woman has touched my life more deeply than they will ever know. Thank you for tonight girls, it was just what I needed.
I would also like to touch on the fact that people are good. There are definitely exceptions out there but there is so much good in the world. Sometimes it is hard to find it but we have been lucky enough to see it. At dinner tonight I was able to meet a friend of a friend who has become special to our family. I won't go into the details right now but she and her family have made some awesome sacrifices to support our family during our crazy trial. How wonderful it is to associate with and be in the presence of such wonderful people. Last week a woman came up to me in Walmart with tears in her eyes and told me she reads our blog. Spence was with me and so she recognized us. It meant so much to me to have her come over to us and hug me and let us know. I am so thankful for all of you good people out there. I am so lucky to have you in my life.
And the last thing I would like to touch on is my gratitude for my own trials. I am so thankful that I don't have anyone else's trials. I am thankful that the Lord has personalized these for me. That He knows what I can handle. We all have trials. Never underestimate the baggage of those around you. Even your friends. It is so important to be kind to all those around you because you never know what burdens they carry. We can learn so much from eachother

Once Again

Here we are again. Again. I cannot decide if I care. I miss being at home and I like being together as a family but this just happens way to often to get all worked up over it. I want to be with all of my kids but there really is not another option. I think that maybe I am just so "whatever" about this stay I think because we really are getting close to the end of all of this. I think I am feeling that we can just push through this and sacrifice for three more months. His fever has only broken with Tylenol but creeps back up to about 102 degrees when it wears off. He is feeling just fine but has this stupid fever. It may just be a neutropenic fever but we cannot leave until his temperature is down. His platelets are really low even after his transfusion yesterday but that is not factor in us staying here. Platelets can be given in the ER or in clinic. We will pretty much be sitting here, waiting around to find out about blood cultures (bacterial infection)and for his fever to go down. I also want to thank everyone who has been actively involved with Project Super Quilt. I am going to try to get back to the emails today and with the talents and mastermind of Super Jena I am working on a Project Super Quilt blog! If you have any questions about the quilt project email me goochymomma@gmail.com

The Cancer Baby (NO it is not what you are thinking)

I AM SOOOO SORRY! I didn't fall off the face of the planet. I have been EXTREMELY busy. I still have tons going on but I will work on pumping some posts out! I have been working on some blogs in my head and hope to get them here soon. Today I wanted to finally blog on what we are calling "the cancer baby". NO NO NO. It is not a real baby. I am not pregnant (Heaven knows I am not THAT crazy!). What I mean is that 9 months ago on Tuesday, November 2nd Spencer was diagnosed with Rhadbdomyosarcoma. NINE MONTHS AGO! We could have been pregnant and had a baby in this time frame of insanity. It is our cancer baby. Pregnancy is LONG, but let me tell you being "pregnant" with cancer is a whole heck of a lot longer and I never thought we would get to this point. I can actually see the finish line from here. I am not even standing on top of the mountain any more I can see it straight ahead. There may be a few more obstacles to dodge before we get there but we will get there! We have chemo today. Just a clinic chemo. His ANC is great but his platelets are low. I am almost certain they will transfuse today because they are so low. We need to take off but I will work on some more posts!