Tuesday, December 28, 2010

Super Cool Story

I love to refinish furniture. My garage is full of "projects" presently. I was looking on a local classifieds site for a headboard for Isabelle. Last week as I was searching I found one that I liked and I texted the girl to ask if it was still available. She responded back that it was and I told her I was interested and would try to pick it up early this week. I forgot about it and about my busy schedule this week. She texted me this morning asking if I was still interested. I told her that I had an 8 year old son with cancer and that we had testing and chemo and I just did not think I would be able to get it in a short enough time period and told her to go ahead and sell it to someone else. I had a playdate with some friends today and I got a phone call from a number I did not recognize. I did not answer it and did not realize that there was a message. I found it a few hours later. It was the girl selling the headboard. Her message said that her son had had cancer and she wanted to give me the headboard, no charge, and she would keep as long as I needed her to hold it. I called her back and she asked me what type of cancer Spencer has. I told her. Before I could finish saying Rhabdomyosarcoma she was like "no way! my son had rhabdo too". Rhabdo is rare and so this was amazing to hear. I went on about Spence, mentioning him by name and she said "wait, your son is named Spencer? My son is named Spencer." Seriously people. What are the odds that we both have Spencer's who have had Rhabdo. She said another family whose son had Rhabdo had given her the headboard and she felt like she needed to pay it forward to us. Seriously crazy! You know sometimes Heavenly Father allows us to go through horrific times in our lives but he always lightens it up with some act of kindness, crazy connection, or fun coincidences. Her Spencer had Rhabdo when he was two and three and is now nine years old. Healthy and strong. I love this crazy train called life.

Sunday, December 26, 2010

Be Still

My last post was on my husbands friend who passed away early Thursday morning. He had the highly contagious Influenza A and it quickly took him from his sweet wife of ten years and his three and five year old sons. What a horrible beginning to the holiday season. Thankfully, for the hearts of the family, they have a firm belief in God and I am sure will be filled with overflowing peace. One of my first posts ever, almost a year ago I blogged the words to the hymn "Be Still My Soul". The lyrics, and the music has helped me through some of the toughest times and I am hope they can give comfort to this poor family in their grief. Here is there blog: http://teachingtuckandty.blogspot.com/

The music playing is to this hymn.

Be Still, My Soul:

1. Be still, my soul: The Lord is on thy side;
With patience bear thy cross of grief or pain.
Leave to thy God to order and provide;
In ev'ry change he faithful will remain.
Be still, my soul: Thy best, thy heav'nly Friend
Thru thorny ways leads to a joyful end.

2. Be still, my soul: Thy God doth undertake
To guide the future as he has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: The waves and winds still know
His voice who ruled them while he dwelt below.

3. Be still, my soul: The hour is hast'ning on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love's purest joys restored.
Be still, my soul: When change and tears are past,
All safe and blessed we shall meet at last.

Text: Katharina von Schlegel, b. 1697;
trans. by Jane Borthwick, 1813-1897

Thursday, December 23, 2010

LIfe.

Life is so short. We have no idea what it will bring to us on a second to second basis. Live your life in happiness, in gratitude and in service to the Lord. Nate is a loyal friend. He has a lot of really good friends and he treats them like gold. It is a good thing to have Nate as your friend. This morning he called me in tears. I started to freak out a little. Then he said that his good buddy, a work friend that he has talked about for years, a friend he spent all last week with during a business trip, had passed away this morning. My heart dropped into my stomach. He had been having some breathing problems, the doctors thought maybe sleep apnea and this morning his wife was not able to revive him. Two days before Christmas. He has two little boys. These are moments that you sit and think "Why Heavenly Father? Why?" It brings a deep sadness into your soul. It makes me thankful for the moments I have with my family, with Spencer. It makes me thankful to be able to appreciate the precious time I have with Spence, knowing that his life has been hanging in the balance. It would be devastating to have a child, a spouse, family die so quickly, without time to say goodbye, without time to say I love you. We are all human. We make mistakes. We get angry, we yell at our loved ones. We go to bed, to work, to school mad. What if we never had the chance to say "I am sorry" or "I love you" again. How devastating. Those little boys are so young they most likely will not remember their daddy the way they should. Life is so short. Please, please, please, be thankful for every moment, every relationship, every ounce of love you are able to feel in this life. We are so very lucky to have these things in our lives. Who cares if your husband forgot to take out the overflowing trash, or that your wife didn't hang up her towels, or that your kids didn't make their beds. Be anxious for the time they walk into the door and you can snuggle, rub footsies, give Eskimo kisses and say "i love you sooooo much". Please keep your prayers with the Williford family this Christmas holiday.

Wednesday, December 22, 2010

Silent. Holy.

There is no better time than now, this very Christmas season, for all of us to rededicate ourselves to the principles taught by Jesus the Christ.” - Thomas S. Monson

There is not another song that stirs so much emotion, and so much peace, than this one, for me. The words give me chills. My heart is filled with Christmas, true, raw Christmas. Being a mother myself, I imagine a young girl, a virgin nonetheless, delivering her child, the son of God, laying him in a troph. How lucky we are to take a moment to recreate that miraculous birth. Silent night. Holy night.

Silent night, holy night. All is calm, all is bright round yon virgin, mother and child. Holy infant so tender and mild. Sleep in heavenly peace. Sleep in heavenly peace. Silent night, holy night! Shepherds quake at the sight. Glories stream from heaven afar. Heavenly hosts sing ALLELUIA, Christ the Savior is born. Christ the Savior is born. Silent night, holy night. Son of God, Love's pure light. Radiant beams from thy holy face, with the dawn of reedeming grace. Jesus, Lord at thy birth. Jesus, Lord, at thy birth.

Sunday, December 19, 2010

Peach Fuzz

I was rubbing Spencer's soft bald head today and I felt some prickly spots. I looked at his eyes and noticed that his cute eyelashes are growing back. They are stubby but there and his eyebrows are fuzzy. It occured to me that if these last chemos had not stopped his hair growth then his hair is most likely back on track to normal growth. That is so cool but it makes me a little nervous. I am so afraid that things will start to go back to normal and then we will back track but I just need to be thankful for normality and recovery. I need to have faith. It will be so great to have a little boy with awesome hair!

Thursday, December 16, 2010

I Have Not Forgotten You

My computer is undergoing refurbishing and I cannot post pictures. I have tons to post and am hoping to work on it. I am still here. Still busy. Still full of thoughts! I will hopefully be back up and running very shortly!

Tuesday, December 14, 2010

CALLING ALL BLANKETS!

I am trying to collect the blankets so that I can get them delivered on Christmas, especially the fleece ones. If you have fleece blankets let me know so I can set up a time to pick them up or meet you somewhere! If you have quilts I would like those as soon as possible but it is not urgent, we can continually deliver those to the hospital. Also if you have supplies for me contact me for pick up or drop off! You guys are so wonderful and will receive so many blessings for helping these sweet little kids out. A soft fuzzy blanket and a warm quilt brings smiles to these cute little bald kids faces. They are unforgettable! Email me: goochymomma@gmail.com

La Eternidad



Seven years of school (and more coming), three children, 2 apartments, 3 homes, family death, family marriage, lots of tears, lots of laughter, cancer, illness, health and strength, financial roller coasters, many jobs, weight gain, weight loss, etc, etc. and here we are TEN YEARS LATER! I knew many years ago when Nate told me he loved me for the first time that he would be my eternal companion. We have forged many battles and have fought hard to be here today. I am so thankful that my Heavenly Father has blessed me with a man who works hard for his family, honors God 5, and loves his children. 43% of marriages end by year 10 and I feel so thankful to have pushed past the statistics. I cannot wait to be the 5% of marriages that last 50 years.

Sunday, December 12, 2010

“If a man be gracious and courteous to strangers, it shows he is a citizen of the world.” ~Francis Bacon, Sr.

I love to people watch. The psychology of social behavior intrigues me and it also gives me the opportunity to be introspective to my own behavior towards others. I had to make a stop to the grocery store to pick up a few items and witness a couple of different families and their interactions with one another. As I was walking in to the store there was a family a lot like mine. They had three children about the same ages as my children and my guess is that they had been married, or atleast had been together for close to 10 years. It was raining outside and the dad was holding the youngest. The child was whining because it was cold and the dad was reprimanding him, the mom turns her head sharply and with a nasty look says to her husband, "he is only two." She said it again and the second time with more contempt. He just rolled his eyes and they continued to walk into the store. I thought to myself, how many times has this kind of scenario happened in my family and I hope that I was never that mean, although I know there have been times that I was. I also thought about how I tell my children all day long to be kind to one another, no matter what is going on. We don't have to belittle one another and speak meanly to one another. We can always use calm, pleasant voices no matter the situation. I saw a couple of quotes on Facebook this week that were appropriate for this subject. The first one says "If we cannot be clever, we can always be kind." ~Alfred Fripps How true this is. I am always so impressed by strangers who are kind, and I try to do the same, however, I think the real test is being kind, ALWAYS, to your family. I thought the husband could have snuggled his two year old closely so that he felt warm and comforted, and the wife, she could have nicely turned to her husband and said "its okay babe, he is only two, he is cold". The situation could have continued differently. The animosity that the couple displayed for one another could have been non existent and their marriage could have become strengthened. How many times have situations like this happened in our own marriages. Especially for some of us who have been together for ten years, plus? Why do we do this? Why do we do this to the people we love the most and want to spend forever with? On the other hand there was a newlywed couple, no children, who were shopping together, holding hands, deciding on what they were going to make together for dinner. They were so loving, and kind to one another. You could see the love in their eyes and feel the love just by being in the same aisle with them. We have all been there. Do you remember those days? The courting days, the newly married days, no children, just you and your love content with being poor and living on love. Kissing was often, butterflies in your heart every time you saw them or spoke to them on the phone. Just recently I thought to myself how much I miss those days, but then I decided, those days to not need to be missed, they do not need to be in the past. At this point living ten years with bad habits, being enriched a thousand fold for each addition of a new child in our family, growing in knowledge and experience together in a marriage should only make for a stronger bond. I decided, that I wanted to feel the butterflies still and smile when I get a text, an email or a phone call. This is my purpose in this life. I not only wanted to be a wife and mother I wanted to be Nate's wife, and the mother of his children. At this stage in life best friends don't come and go, they are permanent. He is my best friend and I am trying my very best to show him that he is and always will be. Last night we were able to celebrate our TEN YEAR anniversary. Ten years of marriage. We have been through school, child birth, frustrations, cancer, financial struggles, family divorce, family marriages, etc, etc. So many life experiences to make our bond stronger. I love him infinitely more than I did the day I married him and am so thankful to my Heavenly Father for sending him to me. He is an incredible man and I only hope to continue to be more kind and more loving to him as life happens and time goes on. Be the happy couple, forever grateful for one another. Be the stranger who smiles continually, brightening others lives. Be thankful for your life and make it as wonderful as you can. This life is but a little time, make the best of it.

Monday, December 6, 2010

Rambling

I was reminded to day by a dear friend that I have not blogged in a week. It has not been a week, however, four days is still too long to be away from you. It is good in a lot of ways that I have not blogged because that mostly means things are good. Life seems kind of normal at the moment. Today I did lots of laundry. I cannot tell you how nice it is to stay home, not put on any make up not have to get dressed and just clean your house. Being normal feels so nice. Although every chore on my list did not get accomplished today I feel like it was a fulfilling day. Like I said before, lots of laundry was done, a nice dinner was made, lime cilantro garlic shrimp pasta, salad and rolls. I am able to go to bed nicely showered and fingers painted blogging to you all while I listen to a rainstorm or the ocean tide crashing on my iPod. Monday nights in our home are called Family Home Evening. Its a chance to be together as a family, to have little lessons about the Savior, and to plan and organize our home. We have not always been so diligent in following through weekly but we try hard and it has become an important goal in our family for this next year and beyond. Tonight we were able to learn about service and to learn about goals. We set a lot of family goals and went over our biggest priorities in our lives. It is so important now to teach your children how to become, honest, hard working , respectful people, so that they can emulate these traits in adulthood. I love watching my children grow. I love to teach them new things and watch them as they strive to implement these new things into their lives. It is one of the best things about being a parent. We also designated Fridays as our Family Fun Night. It is the night for us to watch movies, make fun dinners, eat popcorn, have treats and stay up late. I hope that they are ever excited for FFN! I am so thankful to be a part of such an incredible family. Each person is so amazing and I am just so lucky to be piece of this extraordinary group.
It is time for me to go to sleep. I have boot camp at 530 in the morning and I am determined to go everyday this week (excluding Friday because of chemo). I have finally pushed through my plateau and am heading towards a 40 lb weight loss since July. I would really like to make it 50 by the end of the year! My muscles are sore tonight from 400 squats and 220 push ups today. I still have a bazillion pictures to blog. I will try my hardest to get those up soon! Thanks for listening to my rambling about my day. I love you all.

Thursday, December 2, 2010

Reflections

I am having an emotional moment. I am not quite sure why. It may be because I have been "spring cleaning" and I was going through a lot of beginning of diagnosis papers, and it may be a little because of the easy listening music playing but I have some mixed emotions. I think about how unknown the future was for us 10 months ago TODAY. How scary things were back then. We still have moments of unsurety but with the end close and his health improving it is easier to be optimistic now. I was thinking about all of the hospital moments we have had and all of the friends we have made. We have 3 inpatient days left if he doesn't get sick before the end and it makes me emotional to leave all of the wonderful people there. We are so happy to be done and not have to stay there regularly but these people have changed our lives, they have all saved my son's life in some way or another and it makes me emotional to leave them. Spence got emotional the other day and said he was going to really miss Mike, the child life specialist in oncology. What a journey we have been on. We have gained so many things. I remember a cancer mom telling me when I first began this that I will come out of this a different person.
We are all different. This has changed us all so much. We are branded and even a little scarred but we are better. Our perspectives and priorities have changes and we are happier than we have ever been. Our family bond is strong. This will be the best Christmas of our lives because we have a love for eachother and an appreciation that is better than before.

Monday, November 29, 2010

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!

Thursday, November 25, 2010

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.

Thursday, November 18, 2010

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.

Wednesday, November 17, 2010

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.

Tuesday, November 16, 2010

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.

Monday, November 15, 2010

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!

Thursday, November 11, 2010

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!

Tuesday, November 9, 2010

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.

Monday, November 8, 2010

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.

Sunday, November 7, 2010

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.

Saturday, November 6, 2010

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

Thursday, November 4, 2010

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!

Wednesday, October 27, 2010

Foody and the Beast

Doxorubicin. Blah. 48 continuous hours of red poison. This is the chemo that put him into the hospital for two weeks. We need a lot of prayers to keep him healthy. This is thankfully his last dose of this stuff. After this week we have only 4 inpatient chemos left. Hurray! We have a clinic chemo next week and then a big evaluation the following week. Then we will begin a new chemo. But since we are focusing on the positives this week I will talk about the FOOD! Oh my holy appetite! Yesterday Spence ordered room service SIX times. I wish I had my camera cord to post the pics! He started off light with oatmeal, then moved on to some mashed potatoes with gravy, followed by some nachos and some french fries. For dinner he ordered a smothered burrito with sour cream, carrots and broccoli, a dinner roll, a garlic bread stick-which he didn't care for, and an oatmeal raisin cookie. To back track a little, in between the schload of snacks and dinner he threw up a little. As I was wiping his mouth up he says, "mom can you hand me the menu?". Oh my Spencer. After dinner he ordered buttered popcorn, skittles-they gave him two bags, regular and berry, and a Sprite. He wanted to be prepared for our movie night, Harry Potter and the Chamber of Secrets. It was a fun day watching his excitement over all of his food choices. It has been a long time since this has happened. He opted to stay here overnight on our last day instead of leaving late that night because he wanted to eat breakfast before he leaves! I love it! Thanks for all of the prayers regarding his taste buds. Please pray that this chemo does not kick his bum like it did last time!

Good Things

DANG IT! I totally left my camera USB cord at home! I will keep posting this week but I will be pictureless until I can grab it. Maybe Friday. This trip is a little emotional for Spence because he will be missing out on all of the festivities this weekend. It is hard because Halloween is a big deal in our family. He will be missing out on our church party and the school parade. He gets home on Saturday (Utah celebrates holidays on a Saturday if the real holiday is on a Sunday) and since this is the Chemo that kicked his butt last time and put him in the hospital for two weeks, I am going to be cautious and not let him go trick or treating. Sad day I know. It is one crappy year! We can do hard things. And let me tell ya, missing Halloween is a hard thing! We are compromising and sitting at home with Gramma Suzi and Grampa OK and watching Nightmare Before Christmas, eating donuts drinking hot chocolate and carving pumpkins. We will make things work. Belle and Daddy promised they will trick or treat and candy it up just for Spence. We are trying to focus on the positives. We were told that Halloween is the most fun day of all the year here at PCMC. The festivities will go on all Friday and Grampa is coming here to get all the right makeup done for Spencer's zombie costume. They also have Nightmare Before Christmas here and all of the Harry Potter's so we are going to movie it up with popcorn and hot chocolate. We will be one chemo closer to the end. And the most exciting "positive" is ROOM SERVICE! For the first time in SEVEN months Spencer will be utilizing room service! There are lots of good things about this stay! OH AND BEFORE I FORGET...Thanks for voting for Spence, he won the online costume contest!

Thursday, October 21, 2010

VOTE FOR SPENCER

Primary Children's Medical Center is having a costume contest on Facebook. Nate submitted a picture of Spence from a previous year in his mummy costume. The child with the most "likes" on his picture wins a book and a cool flashlight. Click on this link and "like" Spencer!

http://www.facebook.com/album.php?aid=212973&id=204326053387#!/photo.php?fbid=439848368387&set=a.436852658387.212973.204326053387

Voting ends on October 25th.

Wednesday, October 20, 2010

MIRACULOUS

I have MAJOR blogging to do to catch up. I have a ton of pictures from the beginning of the month to now. Before I begin on catching up I wanted to let you all of a huge miracle that took place yesterday morning. To preface, most of you know that Spence has a feeding tube. He WILL NOT put anything in his mouth. Not water, not candy, not ANYTHING. He made the decision that he will not eat until his tastes comes back after treatment because he does not want to ruin the taste of anything. Although he has made the decision to only eat with a feeding tube, he still FREAKS out when he has to get it replaced. Like 3 people have to hold him down and he screams bloody murder freak out. Needless to say, it is not a fun experience for any of us. I have been so fed up with this tube that it is only referred to as the "damn tube". Because it was moved to his stomach instead of his intestines, it has a higher chance of falling out, thus, being replaced more often. Fun. Yesterday morning he threw up tons. The tube came right out. There was frantic screaming on his end. Frantic. Screaming. Fun. It was Isabelle's birthday and I just had so much to do. Getting the tube replaced was not an invited change to our schedule. I once referred to the tube by my terms, and begged him to just eat so that we wouldn't have to keep going through this. THIS IS WHERE THE MIRACLE BEGAN! Instead of quickly responding "no way" he sat and thought about it. He didn't answer, but the hesitation was more than we have been able to get out of him thus far. So I did a little nudging, and daddy did a little bribing ($450 into Spencer's personal bank account for eating regularly). This pushed his decision. He was willing to try a bite of lasagna that night for dinner! UM WHAT? ARE YOU FREAKING SERIOUS CHILD? After all of the fighting he was ready. He drank some water that morning, had a teeny bite of a lasagna noodle that night and drank a decent amount of rootbeer. MIRACULOUS! We decided to take it slow and stick with high calorie smoothies. He decided that he was okay with the rootbeer flavor so for today he is drinking a rootbeer smoothie with vanilla ice cream, his feeding tube formula, protein powder, half and half and rootbeer. He said it tasted almost normal! YAY! I gave him an hour to drink a cup and I will give him more throughout the day. He said in the car today "dad was right, eating makes life easier!" then he said "I just said a prayer, mom, thanking Heavenly Father for helping me get my taste back a little". Sigh. Sweet boy, miracles and food. Slowly but surely. Please pray for him to continue to get his taste back and eat "real food" again!

Friday, October 15, 2010

Update on PROJECT SUPER QUILT

Oh my, I really did take a break from blogging. I have so many pictures to post and hope to have time this weekend to get it all up. Spence is in day three of a five day chemo! They are advancing it so hopefully he gets to come home a little bit earlier. My sister, Casy, is in town from Alaska and I have been spending the night at my dad's so that I am still able to go to boot camp while Nate is gone. It has been a party and a fun time. We had a girls night last night and it was so much fun. Spencer is doing really well and I hope that his blood counts stay up there and do not cause us any more grief. I wanted to thank everyone who has become involved in PROJECT SUPER QUILT. You guys are so incredible! I am hoping to receive the blankets by mid December but I will most certainly take them afterwards! We have a lot of fleece blankets coming which I am most thankful for but I am hoping to get more QUILTS. Tie quilts are perfect and easy! If you email me I will give you the address where to send or drop off blankets, quilts, and supplies and if you have already emailed me asking where to send them I promise I will get to you soon! Also if you have any questions regarding the project please email me! goochymomma@gmail.com

Sunday, October 10, 2010

"OH CRAP!"

I have been enjoying this little break with my family, enjoying the crisp Autumn air, enjoying life, and enjoying all the blessings that are thrown in our direction. I saw a quote today that I really wanted to blog. It is my new motto!
"Be the kind of woman that when your feet hit the floor each morning
the devil says "oh crap, she's up".

I absolute love this. Satan thought he knew what hell was until he met me! Be the woman, the man, husband, wife, mother, daughter, son, father that you were destined to be. Stand strong for who you are and what you believe in. Trust in the Lord with all your heart. Excel in the battle against your trials and be thankful at all times for the many blessings that you have.

Tuesday, October 5, 2010

Dodge

14 days, 28 nurses, 3 different infections, 1 nasal biopsy, 1 PICU visit, 3 different rooms, 2 different NG tubes, 8 medications, 30 techs, about 7 x-rays, 5 department teams of doctors, innumerous blood draws, and many cc's of urine later WE ARE GOING HOME! We are finishing up with our last dose of antibiotics and then getting the heck out of dodge! We are more than blessed to live in these days of advanced medical care. I am thankful for the life of my son and for the opportunity I get to be with my whole family (until chemo next week)! I am thankful for all of the people who have brought our family dinners and who have even come to the hospital to bring food and for the company and for sitting with Spencer while we needed to fulfill other family obligations. It has been a long emotional two weeks but thanks to the power of Faith, prayers, fasting and medicine we made it through! Spence is enjoying a game of Bingo while he gets his last dose of meds and before we skip out of this place. If you don't hear from me for a couple of days, no need to worry, just enjoying the fam. PLEASE don't forget about PROJECT SUPER QUILT.
This is real "red eye".

Horizon

I am starting to feel a little better. A little more myself. Spencer is able to go to the bathroom on his own at night, and it is not as frequent so I think we both have been sleeping better. It is amazing what sleep can do for you. We can see home on the horizon and I think that lifts both of our spirits. If things go as planned we are hoping to leave tomorrow. I was beginning to feel reclusive but now have an excitement of getting out into the real world and seeing some friends! I cannot even begin to thank all of you who have come to visit, or who have brought dinner to my family, or have joined in our fasts and prayers. We are so blessed to have you in our lives. I know I say that frequently but I want you all to know, friends, family, strangers, that we think about you constantly and feel so lucky to have you. I am so excited to go home. To be a family again. Gavin is not allowed on the unit because he is too young so Spence has gone almost two weeks without seeing him. Belle came to visit once but Spence was too drugged to remember so it will be nice to feel safe altogether once more! Here are some pics from this past weekend.


Spencer's platelets have been really low. Platelets are a clotting factor without them we bleed. Because of his low counts and his eyelashes falling out itching his eyes, they starting bleeding (gross I know) from his scratching. Cool pic, I think.
The Hymers, some of our favorite people, came to visit last night. Not only did they bring me dinner, they brought me TWO dinners to have later from Rumbi. He also got a new deck of cards (magic tricks coming soon).
We love you Noel family! Spence got a bunch of cool Silly Bandz. Isabelle is already trying to dibs them because the 100 they sent her weren't enough! These are all for Spence!
Corn dog! I was lucky to be able to spend some time with Jods, one of my really great friends on Friday. We let the kids play at Arctic Circle while we talked. It was totally what I needed.
When we were in PICU they put this cool name tag on his bed to warm things up a bit.
On our way to nasal biopsy, which by the way turned out to be negative for fungal infection.
Tired me waiting for him during the biopsy.
After biopsy, he was angry that I was trying to take a picture so he covered his face.
But I finally got one. As soon as we got back his vitals were normal, and have been since!
I forgot to blog this last time. I wish I got a picture with it all filled up but this beautiful emerald green fluid is what we suctioned from his bowels! Yummy!

Sunday, October 3, 2010

Good Report

I have not disappeared! I just took the weekend off. I don't know if I feel more rested this time though. I am pretty exhausted. These last two weeks have changed me a little bit. I feel different. I feel a little bit altered. I do, however, feel very blessed at the same time. I am thankful for the faith of friends, family and strangers. I am thankful for the power of God. I am thankful to be a mom. I am thankful to be the wife of a handsome, hard working, loving husband. I had things I wanted to say but my brain is tired tonight and cannot work out the right words to say. So I will leave you with good report. Spencer is doing so well. We are hoping to get out of here in a couple of days and have a much needed break until our next chemo stay. I love all of you and the love you have for my incredible son.

Friday, October 1, 2010

Miracles...Once Again.

I need to thank all of you for your fasting and your praying. Especially to our ward for the fast they held yesterday. After 9 days of fevers, they have finally broken. His ANC went from zero yesterday to 1.3 today! 1.3 is good enough to be in public! I have never seen his ANC go up so drastically. We are now just working on healing his typhlitis. His abdomen is still very tender but now that his ANC is up his body can help fight the inflammation. I am so thankful to all of you who love my son and my family and who have prayed unceasingly. There may be an end in site to this long, emotional hospital stay!

Thursday, September 30, 2010

Project Super Quilt

Okay so I am so excited about this project that I would love your help with. Usually the beds in ICS are made with super fun and super cute quilts that lighten up the room and make things feel more "homey". A lot of these kids are here for days at a time and some of them weeks, if not months. These rooms can be so sterile and it is just one more thing to make things more comfortable. I was talking to our housekeeper here, whom we love, and she said they are running out of quilts. They have small quilts that work for the babies on this unit but they are almost out of twin size quilts that they can use for the majority of the patients. These quilts are for the unit. They stay here and helpful in brightening up the rooms. My favor of you all is to help me collect AS MANY TWIN SIZE QUILTS AS POSSIBLE. The dimensions are 70 x 90. They do not have to be fancy. Just fun, colorful patterns for both boys and girls. This will be called PROJECT SUPER QUILT. If you are not the "seamstress" and/or would love to have your kids, church, family involved, I would also love to have fun fleece blankets made to give as gifts to the kids on this unit. Remember we need blankets for boys and girls. If the whole blanket thing is not your thing I am also trying to get small sized lotions, like good ones from Bath and Body works (just the small size), full sized shampoos and conditioners, face wash, laundry detergent, ironing boards, and irons, toothpaste, and all of the essential toiletries for the parents here. It is hard to be here for a long period of time and use sample sized, crappy toiletries. It is just one thing to help make the whole experience feel like home. We have washers and dryers, but no ironing boards or irons and let me tell you, suitcased clothes do not stay unwrinkled! I am really excited for this project and hope that I can get you all on board. Please get your kids, your family, your churches, your schools involved to help us make the ICS department more enjoyable for these sick kids are their tired families. My email address is goochymomma@gmail.com. email me to get on board and I can tell you where to send them etc. I am so excited for this project and know that you guys are so wonderful and will come together to help me with this project! I would like to have blankets to deliver by Christmas. I have a lot of people ask me what they can do to help...this is it!

Wednesday, September 29, 2010

Just Pictures

His poor little heart had been pumping at about 145 times a minute since we got here. Today it finally went down to 106!
Sorry this is a bad picture but 37.5 is a normal temp! It has gone up since then but has broken multiple times today! First time since we have been here!Spence and Uncle Kevin. Uncle Kevin just went through his own hellish journey with Multiple Myeloma and is now in remission! Yay!
Aunt Dale and Hillary with Spencer. They have been such a support to me through all of this. It is nice to have support from people who understand, who have gone through it too!
I wish I had a nice camera. The view is beautiful from our window especially at sunset!
Sleeping sick boy. I think this may have been the first night we were here LAST WEDNESDAY.
Going in for a CT.
Ryan, Jann and the girls came by to say hi and give him an ultra cool dragon and knight!
Still hanging in there. This was right before he got really sick.
Bedside X-ray. Can you tell how swollen he looks in this picture. My poor guy.

Updates

Okay. So I am feeling a little better. It seems as though we are getting a hold on things. I just wish we wouldn't have had to wait so long. His vitals are better and I am overwhelmed by the response of love that I received this morning only minutes after posting my last blog. I am so lucky to have each and everyone of you in my life. I hope that I get the opportunity to meet those of you who follow our story that I have not yet been privileged to know. We are going to be in this hospital for a while but I am thinking that we may have a hold on things currently. Let's just pray things continue to progress without any digression. Pretty much the verdict is that he is severely neutropenic. As a review for those of you who have forgotten, that means he has ZERO white blood cells. Our neutrophils, one type of wbc that we have, is most important in fighting off any foreign invaders. He has zero of them. None. This is caused by the chemo he had. It killed them all off. He came in here susceptible to just about everything out there and that is what he got. He started with a neutropenic fever. He then caught a bacterial infection in his line which we treated. His neutropenic fevers continued raising heart rate, lowering blood pressure. He contracted a rhinovirus (a cold) which has infected his sinuses. Most severely he has come down with Typhlitis, which is common in pediatric patients receiving chemo and who become neutropenic. The CT scan a couple of days ago showed signs of it but the xray did not. After talking to the Infectious Disease Dr. he says a CT scan is more accurate and will take that diagnosis, especially with the diarrhea and vomitting he has been having. X-rays show concentrated clumps of white blood cells, which would be where some kind of infection is, and since he does not have any white blood cells there is nothing to show. He also has a mild case of pneumonia which is being fought by some of the antibiotics already being taken. They are adding one more just to help with another form of pneumonia. So my poor guy has gone through the ringer and will just have to keep fighting a little harder. For my own documentation I am going to list all of his current meds. Antibiotics are: Flagyl, Vancomycin, Gentamicin, Septra, Zosyn, and now Azithromycin. He is also on an Anti-fungal, Caspofungin. He has been taking Ativan for anti-emetics, oxycodone for pain, Benedryl and Tylenol to bring down fevers. Our nurse today is Courtney, whom I have never had, but I L.O.V.E. her. She is fabulous. Spencer's vitals are looking good. His temp is currently 37.9 c which is about 100.0 f. 100.3 is considered a fever. So at the moment we are fever free. His heart rate is back down to 107-114 which is fabulous compared to the 140-160 it had been. His pressures are beautiful. His oxygen levels are still hanging out on the low side so he has been on oxygen all day. He has not slept well for a few days and tries to be tough and not take meds. I asked the nurse, however, to medicate him because he needs to sleep to heal. He, thankfully has been sleeping all day. Thank you for all of your prayers and fasting. Please continue to do so. I need this boy healthy! We love you all.

Contradictions

I am about to contradict all of your comments to me about staying positive and strong. Well maybe I am still strong but I am now going to focus that energy on being negative and aggressive. I am angry. I am sick of this stupid cancer. I am sick of having to watch my baby suffer EVERY SINGLE DAY. I am sick of the thought that we could be here for another week or maybe even two, just to prepare to come back to get more chemo that could have the same effects on his fragile little body. I am sick of the fact that we do not know what is wrong with him. I am sick of the "oh he could have this, or maybe this or maybe this" and then getting results that say it is not one single one of those things. How can we save his little life? How can we get him better? How come nobody can figure it out? Why? Why do I have to spend so much time away from my kids? I loathe all of this. I am angry. What kind of refiners fire do I have to go through? I don't know if I can take any more of this heartache. It just makes me mad. And then it makes me mad to be feeling angry. This is not me. I want my family back. I want my healthy son back. I do not know how much more of this Everest I can climb.
Rant over. Now I will just give you the facts. Last night was ANOTHER rough night. Abdomen xrays show that Typhlitis is not the case. There are no signs of it. Chest xray shows "possible" pneumonia. He is on oxygen with a bubbler, which provides moisture so that his poor little nose does not dry out. His temp continues to fluctuate between mid grade to high grade. Diarrhea all over the bed in his sleep three times last night. This entails, stripping his poor, frail, shivering body down, scrubbing him down as he stands there exposed. How embarrassing for him. How exposed he must feel. C-diff testing which takes 24 hours, and toxin testing which could take 48 hours. Barfing all night. Mucousy, black vomit in larger than normal amounts. Rapid breathing. Normal respirations are between 18-20 a minute, his are 45 a minute. His pH are higher than safe. His CO2 levels low. He has become basic because he is breathing so fast. CO2 is acidic and since he is breathing out so much he is losing acidity causing his body to become basic. Still waiting for docs to decide what to do about that. I DO NOT want to go back down to PICU. If it means making him better or saving his life then of course it is the only option, but we feel protected down here with our "family". It is so exposed and open and germy down there for him. Blood pressures, heart rate and oxygen levels were all stable last night. Potassium is low so he is receiving more. Blood transfusion last night helped with his overall stability. I am now feeling nauseated. This is almost more than I can handle. Obviously the Lord feels like I can. Sometimes I wish we could rescind. "We decided that we don't like this trial so we are checking out, is there something better we can try to endure?" I don't think Heaven works that way. I am begging for your sincere fasting and prayers. I NEED him to get better. Please plead with us for a diagnosis of some sort so that we can get him better. I haven't seen my husband in over a week and it looks like it will be another week atleast. We NEED to be together. We NEED Spence better.

Tuesday, September 28, 2010

Breathing

Last night was a little hellish. We finally got settled in the PICU around 3:00 a.m. Then I find out that they kick parents out for an hour twice a day for shift change, so really, there was not much sleep last night, literally. The CT scans showed Typhlitis, which is an inflammation of the Cecum, part of the large intestine. In short, an inflammation of the colon. It is common in cancer patients after harsh chemo treatments. They started him on two new antibiotics and FINALLY after 6 days of fevers they broke this morning! He looks much better. I am so thankful for all of your prayers. I am breathing much better today. It has been an emotional week for all of us. Maybe I will get some pictures up in the next post!

Monday, September 27, 2010

Heart Broken

I don't know what to do anymore, or how to feel. I am sitting here next to my baby boy, his eyes glazed over, barely open, barely able to speak, as machines beep like crazy. High respirations, heart rate high, blood pressure low, fever ridiculously high. It won't stop. How am I supposed to feel? What do I do for this little boy whose life hangs in the balance. I don't know what to do for my sweet baby who is fighting hard for his life. How long can my heart do this? It is now 1 in the morning. Blood pressure was dropping, oxygen levels dropping, labored breathing. Lots of doctors in the room, worried, I can tell. My heart racing, lots of prayers going on in my head, lots of pleading in my heart. The decision was made to move him to PICU (Pediatric Intensive Care Unit) to take extra "precaution." They pumped 3 bolus' into his tired little body causing respiratory problems. When that much fluid is dumped into a body the blood cannot soak it all in so it can leak into the lungs. Being in the PICU will provide us with immediate "intensive" respiratory and blood pressure care. I think this is one of the scariest moments, aside from his first diagnosis that we have experienced, thus far. I am feeling a lot more peaceful now. He is stable and his responsive. We are having normal conversations, even at 1:30 am. I love my son.

Running Low

The weekend is over and I am back in the hospital. My wonderful husband who I haven't seen in I don't even know how long stayed the long sick weekend with Spence. It is hard to get any rest away from the hospital when Spencer's temp spikes to 105.4 and is so sickly he won't talk. I am so tired. The extreme fatigue is setting in again. It was good to get some house scrubbing done and enjoy time with the kids. I am just kind of blah. I feel relieved to be back here with Spence, sad to leave my kids, and I miss Nate. All of these conflicting emotions make me tired, so tired. Spencer's fever is low grade at the moment, until the Tylenol wears off. The doctor just left the room. We are planning on a CT since we are on day 5 of high fevers, to make sure brain and vital organs are functioning correctly and to see if we are dealing with a fungal infection. His stomach has really been bothering him so they will CT his tummy too. They are still hoping to save his line, and his bacteria cultures are negative but if he is not getting better it still might be an option. At this point I am not sure if we will be leaving at all this week. I am thankful that they have washing machines and dryers for us and that I can bring my Scentsy. It makes things a little bit better. I don't have much to say today. I don't have the energy to say much of anything. I am trying my hardest today to do hard things.

Saturday, September 25, 2010

Insights

I have so much to blog but I am so disorganized without my computer, which is in the hospital with Nate and Spence. Plus I don't like taking away from the little time I have to spend with Belle and Gavs. I just wanted to blog a few insights that I had. On Friday afternoon, I was walking down the stairs at the hospital and a sweet little boy about 4 years old was walking slowly in front of me. He was blind. His mom was helping him count steps down the stairs and count steps down the hall. At that moment I felt blessed. Although my sons life hangs in the balance he has been able to partake of this incredible world that God has created for us. He can see it. He can see me. When I tell him I love him or beg him to get better he can see the sincerity in my eyes. He can see the ocean, and the mountains, sharks, and pizza. Spencer will not always have cancer. That little boy will most likely, always be blind, never really being able to enjoy the magnitude of beauty around him, or see his moms sweet smile.
Today I was reminded of how wonderful my friends are. I was able to attend a church meeting with my friends today and I am amazed at how lucky I am. I feel safe with them and I know that they love me and my family. I may have had many trials in my life but the Lord has overcompensated by giving my, quite literally, the very best friends in the whole entire world.
Today was not only a day of recognizing friendship, but the extreme love I have for my family. Not only am I blessed with great "blood" siblings, I have been blessed with an incredible "step" family. I almost hate (this is not a word I use lightly) using the word "step" because I feel such a great love for these people. My brother Logan sat with Spencer all day at the hospital yesterday so that I could be with Isabelle at her FunRun. My dad, Suzi, Arza, Logan, and Raynee all showed up to cheer at Belle's soccer game today. Tonight Arza (who is 13), had a friend over and let Isabelle tag a long, and I think he honestly enjoyed it. My family is so great. They are supportive and positive and love my kids with all of their hearts. How lucky we are.
These are just a few of the positive things I have been able to take out of my day.
Spence is still pretty sick. His fever has been pretty high all day but is definitely dropping. His blood pressure is kind of low, and he has been throwing up and sleeping more than usual. I think it is better for him to sleep through the hard times. It will help with the healing of body and mind. The doctors are hoping to save his line by running antibiotcs through them. If they can clear the infection then the will not have to replace the line. If in a couple of days the fevers do not cease then the line will be pulled, infection has to clear, and then line replaced. I don't know if we are ever getting out of this hospital. Keeping a positive attitude totally helps make the situation tons better. I can do hard things.

Friday, September 24, 2010

Glass Box

Quite honestly, I am much too exhausted to blog. My feelings, however, are much too raw to let them go. Today was sucky. Plain and simple, sucky. Spencer's fevers are not going down. In fact it has been doing the opposite. On my way home from the hospital today Nate calls me to tell me that his temp is now 104.9. Um, excuse me? 105? It has been awhile since I have been hit with these realities. I have become so comfortable to a normal, healthy boy and here I am again mentally preparing myself. What would I do if I lost my son? If I lost my first born baby? How do you move on from that? Have you ever been surrounded by so many people but felt so lonely. I feel like I am in a different dimension. It is like I can see what is going on but I have no connection, no communication. I am stuck in this glass box and I cannot get out. I am screaming but no one can understand me. They can hear me, but the words do not make sense. It was so nice to have a break from it all this summer but the normality of it all has made the real life situation a lot harder to accept again. Tears are hard to come by these days but today I haven't been able to turn them off. What if's and anxieties keeping me awake and distract my thoughts. We have been through this before and we can do it again. My guess is that his line will have to be replaced once again. Please pray for my Spence that his fever will break, his heart rate will go down and that the bacteria will clear up. A few moments ago a friend commented to me "may you feel the presence of Angels surrounding you", and I feel them. " Peace I leave with you, my peace I give unto you, not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." John 14:27. We can do hard things and with God we can do impossible things.