A Year Later

I'm having trouble sleeping, which is putting it mildly. I'm not sleeping much at all these days. Being on strict bedrest is exhausting, but not in the "fun" I could sleep forever exhaustion that you get after putting in a hard day's work, it's the mind racing, restless legs and body type of exhausted that just leaves you mentally spent and physically tired, but not tired enough...anyways, needless to say, bedrest hasn't been nearly as much fun as I always thought it must be for those who have had the "opportunity" to experience it. Tonight, after turning off the TV in a vain attempt to go to sleep, after tossing and turning for what seems like forever, trying to massage my own legs to calm them down, I just decided to get up and look at a bigger screen than my smart phone. Then I remembered that people blog and that I have a blog too, so I should blog...but where to start when you left off almost an entire year ago? I think where we start is here, today, right this minute. I think that would be a good idea. So right this minute, I am sitting here, enjoying feeling my baby girl move and stretch inside me. The kicks are few since she just simply doesn't have the room anymore in there, so it's more like really painful rolling and sometimes she stretches a limb so far that I can actually make it out through my belly. That really hurts when she does that, but it's way cool. I am so grateful she is so active for me at night so that those REALLY loooong night hours where the worry and anxiety and all the cares of the world can become overwhelming, I am reassured that she is ok. I miss the boys so much, but they are having a blast being spoiled by grandparents and great grandparents. Frankly, I am more than a little worried about how they will do coming home. I know Garth Le will do ok since he has more of a grasp on the situation and knows that it is temporary until his baby sister is born, but I'm fairly certain that Gavin is convinced he is moved out and he will never have to have a bedtime ever again. I know it will be a hard transition back to "normal", or rather our new normal with our new addition, but I am anxious to get them home and to feel like I am their mom again. Tomorrow, March 18th, I will be going into the hospital bright and early to induce labor and close the book on this very difficult pregnancy. GraceLyn will finally get to meet her big brothers and lots of others that have loved her and prayed for her for so long. She is one lucky girl. I haven't even met her yet, but I do know one thing about her already and that is that she is a very special daughter of our Heavenly Father that was sent to our family at this exact time for very sacred reasons. Her coming into this world has been a precious gift for our family in many ways. I'm not sure if we will ever fully understand how special she is, but I am looking forward to meeting this very special girl.

Living Proof

I had an amazing trip this weekend to unwind and put some much needed resources into myself.  I got to meet my favorite singer/songwriter in her home with her beautiful family.  It was an experience I will always cherish and I walked away very uplifted, knowing that if I focus on the things that lift me up, then I will be bouyed and then, in turn, I will be able to help others.  My outlook has somewhat changed from a state of fear, just surviving the torment surrounding me and I am now looking more towards the motivating force of love. Thanks to everyone, my friends, my family, and total strangers that have done more for us than you could ever imagine and for that you will be supremely blessed.  Thank you.  Please watch this video I made with Hilary Weeks' beautiful voice and message.  Gavin is LIVING PROOF and we can't deny that. Whatch the video and turn your sound up!
Living Proof

Updates

On February 23, we had our first MRI without chemo and it showed no evidence of tumor growth. Gavin weighs 31 pounds and is holding his own. On February 25, he turned 2 years old and he is definitely in the "terrible twos". He is exhausting, but soooooo adorable. He calls me "Mommy" but if he is feeling silly, he calls me "Brut" (Brooke) or "Feethar" (Sweetheart) and he calls Daddy "Honey". He sleeps almost every night all night in his bed now that we got bunk beds for the boys' bedroom. Garth Lee has the top bunk and Gavin has the bottom. We lay down with him until he goes to sleep. He likes to have his back scratched and he will tell you "up, up, down, down, yea, ri dere". He is all boy with scars or bruises on his chin, forehead and eye from falling into walls, doors, tables and fireplaces...the boy has no fear.

Garth Lee is doing so well in school. He still has straight A's, but his true love right now is the PS3 game, Skylanders. That kid can talk about that game for hours and he loves to play, especially with Daddy. They recently beat the whole game, but he doesn't mind starting over, plus some harder levels are coming out in August which is just in time for his 8th birthday so he can hardly stand it. He does Jiu-Jitsu 2 nights a week and karate 2 nights a week. It is pretty intense for him, it gives him a good work-out and he likes it. He is getting much better, right now he is still a white belt, but he has 3 stripes and should get his next belt after the next competition.

Garth is still working nights in Pediatrics at the hospital and he really enjoys it. He also likes playing Skylanders with Garth Lee. When I am working, Garth is the caretaker of the kiddos and he does such a great job. He really is impressive with the kids and they respond very well to him. I notice they are more well behaved, but that just may be because I haven't spent the whole day nagging them. Yesterday, Garth decided for some reason to shave his head. Grandma is livid with him for doing it. He has the thickest, nicest head of hair but he just got aggravated with it being in his face and he was trimming his facial hair and just went wild with the trimmers and now has about a millimeter of hair all over his head. I'll have to get a picture and post it. At least he has a nice shaped head and thankfully his hair grows fast.

I recently went back to work 3 days a week instead of on call like I have been for the past 2 years. I only work on days that Garth is off so we will always have one of us home with the boys. I have still been struggling to get back into the groove of life and living it since Gavin's diagnosis and this cancer roller coaster. I think having work to ground me is going to be a really good thing for me and help me move on. I really enjoy working and I enjoy the people I work with.

We have a few trips planned in the next month and this summer. Next week is spring break for Garth Lee and we wanted to get out of town. We are going camping in the Guadalupe mountains for a few days and one of the days we are going to drive the 45 minutes to Carlsbad Caverns. We have all been there before but we haven't done it together. The Grahams are going camping with us too and we are all really looking forward to it. At the end of the month, Garth and I are taking Garth Lee with us and we are making a flying trip to Salt Lake City, UT to see a session of General Conference live. We are going to the Sunday morning session which means we will also get to enjoy the Mormon Tabernacle Choir special live too. I'm really looking forward to it and the time that I will get to spend with my husband and oldest son while we drive. I actually love road trips...minus little kids, those road trips really stink! Also, in late July/early August, we are all heading to Hawaii to help Sarah G and her kiddos move and settle in and say goodbye (for a little while). We are all going out for a week and after one week, when Garth has to go back to work, he is going to fly home with Gavin but Garth Lee and I are going to stay for another week to help them get settled. It will be all of our first time to Hawaii and we are all really excited to experience it together. I'm trying to just think about the fun of it and not focus on the saying bye part of it, but the closer it gets, the harder that is. I will really miss my friend very much but I'm going to do my best not to dwell on it and enjoy the time we have left! I'm grateful for the opportunity to be able to go on all these trips and that my family is healthy enough for us all to experience them together.

Beautiful Heartbreak

Gavin's tumor is gone and his bone scan was negative for bone metastases. Officially, "The mass in the right supraclavicular region partially surrounding the right vertebral artery is no longer evident." He's bald as a cue ball, but for the moment at least, cancer free.

It's no secret that I am a fan of touching music. My latest favorite tear-jerker is by Hilary Weeks, Beautiful Heartbreak. It has touched me, almost defined me recently. I hope I continue to move forward and do all that I can with the gifts that Heavenly Father has given me. He's given me yet another chance, but he has, with this chance, also given me some valuable perspective and motivation backed by good old-fashioned hardship.

Although I would not hesitate to (obviously since I do it for free), I am not a paid endorser of Mrs. Weeks, I just love her music and how it touches me and her voice is so beautiful, even more so in person. I'm sure it won't get around to her with my 2 or 3 readers, so I don't think I'll get sued, but I've included credits below, just in case because I don't need the lawyer fees on top of the medical bills!

Please watch the video AND read the words. We've all had hardships, some so much harder than others and mine may be miniscule next to someone else's, but I'm trying to look at the view that I have on this side, having faced something I never thought I would be able to survive. I'm trying to make sure that I don't just run away from the trials that have gotten me where I am. We are where we are in life not in spite of the things we have been through but because of them. I'm not saying a trial or hardship has to define us. I just want for myself to be able to use whatever part of what I've experienced that will make me a better tool for Heavenly Father to be what defines and shapes me, not the bad stuff. Then, I want to use that to help me shape my children into people that can do the same thing.

Music and Lyrics by Tyler Castleton and Hilary Weeks:

"I had it all mapped out in front of me,
Knew just where I wanted to go;
But life decided to change my plans,
And I found a mountain in the middle of my road.

I knew there was no way to move it,
So I searched for a way around;
Brokenhearted I started climbin',
And at the top I found...

Every fear, every doubt,
All the pain I went through;
Was the price that I paid to see this view;
And now that I'm here I would never trade...

The grace that I feel,
And the faith that I find;
Through the bitter-sweet tears,
And the sleepless nights;

I used to pray he'd take it all away,
But instead it became a beautiful heartbreak.

I never dreamed my heart would make it,
I thought about turning around;
But heaven has shown me miracles,
I never would have seen from the ground.

Now I take the rain with the sunshine,
Cause there's one thing that I know;
He picks up the pieces,
Along each broken road.

Every fear, every doubt,
All the pain I went through;
Was the price that I paid to see this view;
And now that I'm here I would never trade...

The grace that I feel,
And the faith that I find;
Through the bitter-sweet tears,
And the sleepless nights.

I used to pray he'd take it all away,
But instead it became a beautiful heartbreak.

I would never trade...

The grace that I feel,
And the faith that I find;
Through the bitter-sweet tears,
And the sleepless nights.

I used to pray he'd take it all away,
But instead it became a beautiful heartbreak."

I hope to use Heavenly Father and Jesus Christ as examples as I raise my sons into men. I hope to live a good life to set a good example for them. I want them to want their own families to be like ours. I hope they make good choices and also set good examples for those around them. I will always give them lots of chances, but there will be some consequences that will be impossible for me to shield them from. No matter how much I try to protect them, I won't be able to protect them from everything, of this I am sure. I want them to use what they learn from me and their father, from church, from friends and other family, from life, to use everything for good. Not just for themselves, but also for those around them. I want them to learn and realize that knowledge is not just important but essential and to never stop learning. Mostly, I want them to know that their mother knows that she is so blessed to be their mother and that I thank the Lord every chance I have that he has entrusted me with them both. I am so blessed in so many ways, too many to count, and I want them to feel the same and that when they try and count their countless blessings that they count me in there somewhere.

So Here We Are

Where is here, you ask? It's here, just here. Everyone asks about Gavin, how he's doing. The general answer is "good", the real answer is that we are the same, so were trucking on any way we know how, but here we are still. We've made some changes, done some things the same, waited, waited, and waited some more.

We're here, still working (Garth mostly), still going to the doctor, hospital, etc. One of the things we have changed is that we are not taking Gavin to church anymore through the worst of the flu/RSV season. Gavin is free to do mostly all normal things about 70% of the time depending on his numbers and his overall feelings of wellness. Although if he were in day care, he would not be able to attend at all, if he were school-aged, he would have been able to attend approximately 50% of the time based on our tests and numbers since school has started.

We are very regular church-goers and we don't take this next decision lightly. Even for the "Bible Belt", we get impressive eyebrow raises at 3 hour church every Sunday. One wonderful and dangerous thing about church for us now is all of the little children that are there...and their wonderful parents who know that they should be at church because that is where they should be, to worship and to learn and to feel The Spirit...weather or not their kid has green boogers running down to their knees and a wet cough from a 2 year old who doesn't quite have handwashing down yet, much less the sneezing/coughing into their elbows thing to help reduce the spread of germs. I also have a very solid stance on immunizations including flu shots which I am going to just leave at this: I think we should all have both, not just for the good of your children, but also for the lives of mine and vice versa. I'm sure this will sound very preachy or blown out of proportiion (mostly for those who do not vaccinate their children), but my immunocompromized baby could die from the exact same "cold" that just gives your kid the sniffles. So here we are...I guess I should change the name of this post to "My Soapbox", although it was totally unintended initially, but HERE is where I will end it. I'm not in the mood to debate the issue, I just was going to say, we will make sure we are at church...all 3 hours...minus one or two of us for a while...just wanted everyone to know we are ok and that Gavin is not struggling with his testimony, he's just trying to do his best to get better. Loves!



***Late addition: Since this entry took an interesting turn, I recalled a rather appropriate picture I have from last winter that goes very well with the "substance" of the post.

P.S. I know at least 5 people who will actually gag and possibly vomit when they look REALLY closely at this picture of Gavin sleeping in his carseat...sorry to those of you...sort of ;-)

A Choice

Lots of my posts lately have been about Gavin and his neuroblastoma. I'm going to veer away from that topic, if only for a few short moments.

Garth and I got in a fight today. A really stupid one (like most), that I can actually remember how it started, but it's just really not worth it and although we both feel very strongly about the arguement, it's still stupid, no matter how you slice it.

While he was mad at me and pulling some pretty petty punches, I was really mad at him trying to think of even more petty punches that would hurt him way worse than anything he could say to me...luckily, before any came out of my mouth, I paused for one fleeting second and made an astonishing discovery about myself and my relationship with Garth and also with other people I love in my life.

I understand now why many marriages fail and people part ways because they get mad over something stupid or even over something not so stupid. The key is in the CHOICE. I make a choice every single day weather I am aware of it or not to be with my husband. I choose him, every single second of the day, I choose him. He chooses me too (thank goodness) and not in spite of our shortcomings, but because of them because they are what make us who we are are and without them we wouldn't be ourselves.

Thank you Garth for choosing me, every single day, especially the days it would be so much easier to choose otherwise like so many people do today.

I choose forever, every single day. And that's all I have to say about that.

On the road again...

Friday, we had a very long day at the doctor's office getting Gavin's port accessed and then we had a long wait at the Childrens' Hospital for day surgery to prepare Gavin for his alomost 2 hour MRI where he was under asethetic the entire time. We had to wait the entire weekend for the call with the results. Although we did find out right away that his Harlequin syndrome was legit as a result of the anesthetic. Good news is it only lasts a few hours.

I wish I had a goose pimple inducing announcement that miraculously Gavin's reisdual tumor was completely, miraculously gone...but I don't have an announcement like that. We got a call around 4 PM from the oncologist's office telling us to be prepared the next morning at 7:30 to be admitted to the hospital for the next 3-4 days for his next round of chemo. The report stated that:

**Warning....VERY technical talk to follow, skip to Impression, if you feel impressed to do so**
"Compared to the MIBG scan of 07/30/11 showing increased uptake at the right supraclavivular area, MRI of the thoracocerviacal spine of 07/27/11, and the preoperative MRI chest of 07/25/11 what is likely port of right jugular catheter results in metalsusceptibility artifact. This and HASTE imaging hampers evaluation. Minor atelectatic change is seen at the posterior lung bases. Previously demonstrated right chest tube has been removed. Small residual area of soft tissue with abmormal enhancement post contrast in the right supraclavivular area incompletely encasing the proximal right vertebral artery just caudal to the thyroid level correlates with the abnormal focus of uptake on MIBG and is similar in apearance since MRI of C-spine on 07/27/11 but more clearly demonstrated on the previous study. The soft tissue thickening along the lateral margin of the right vertebral artery at this level is improved since 07/27/11, but this is difficult to certain. Ultrasound may prove clarification. The area of abmormal enhancement is best demonstrated on T1 axial postcontrast view, page 18 of 20. This measures about 8mm. No further abnormal enhancement is seen. Visualized liver and spleen are unremarkable. Adrenals are not clearly imaged. Normal bone marrow pattern"

**Impression: Small focus of soft tissue thickening with enhancement in the right supraclavicular space partially encompassing the right proximal vertebral artery. This is likely residual neuroblastoma. Appearance is similar or slightly improved since 07/27/11.

So we learned 3 things" 1) The tumor is still there and pretty big. 2) Hospital food really isn't all that bad when Mickey Mouse Clubhouse is on. 3) For us at least, the more chemos you get, the more vomit Mommy gets to clean up!
Luckily, I have a doctorate degree in and therefore speak mumbojumbo, so the first part gives me a bit more information than the impression, but suffice it to say: The tumor is still there, and it is about the same size as before (following the surgery to remove most of the tumor).
The good news is, it is not growing. We will do 2 more rounds of chemo (one more since we just finished one yesterday) and then we will do the MIBG scan that will show if the residual tumor is actually active tumor. As you can see, the tumor that was left was not removed because of it's placement surrounding the vertebral artery and it's proximity to the right carotid artery.
We are all doing fine. Garth Lee is doing well in school and he won his first Jiu Jitsu match! He really likes it and I hope that he sticks with it. Garth is still working like crazy and we are trying to get some maintenance stuff done around the house that has fallen by the wayside. I work this weekend, but we will be getting busy Monday! Isn't it RUDE that people still want to get paid when your kid is sick! Like the bank and the electric company. RUDE! [that is sarcasm for you sensitive folks...sort of]

Thank you everyone for all of your kind gifts and words, and prayers. They are all what have gotten us through this trial. Gavin is so strong and he helps me see the good in everything, but sometimes you seem to believe grown ups more. Thank you all from the bottom of my heart!

Life's A Beach

Wow! So why didn't anyone tell me that 30 was going to be so rough? I just read my "Over The Hill" post and that seems like 2 lifetimes ago now.

In July, Garth and I went on an anniversary trip to St. Thomas to celebrate 10 years of marriage. While we were there, we were able to see so many beautiful things and we had so much fun just being together.


No kids, no worries. We had fun, I'm glad we went. But somehow our life fell apart while we were gone and we didn't even know it. I have felt guilty (not a new thing for me) looking back, trying to think of a time while we were there that I might have felt a motherly inkling that something wasn't quite right, or that "still small voice" whispering to me that I needed to be ready for a great trial, but there is nothing. Even when Grandma texted me about taking Gavin to the doctor on Monday, I didn't have anything tell me that it was serious. I spent the week taking pictures, snorkeling, eating, shopping and canoodling with my husband. I wasn't prepared at all for the direction our lives were about to take.

Saturday night, July 23, 2011, Garth and I landed in Lubbock after a very long day of traveling. I was very excited to come home to the kids and my mom brought Garth Lee to the airport with her to pick us up even though it was close to midnight so that we could see him. Gavin was with Grandma that day because we tried to make sure that the boys weren't too much of a handful and that they got their alone time with grandparents so they spent a lot of the time at different places while we were gone. I made sure it was ok with Grandma that I came and got Gavin even though it was late because I missed him and I had never been away from him for that long. As Mom drove us home from the airport, she talked about Gavin being sick that week and that he was pretty croupy, but that he had finished his steroids and he was still on the cough medicine that he was prescribed when Grandma took him to the doctor almost a week before. It reminded me that he was sick, I had forgotten.

As soon as we were home, Garth and Garth Lee took our luggage in and got ready for bed as I left to go get Gavin. I walked in the door and I could hear him wheezing. He was tired, but running around, just like normal. He was a little hesitant to come to me, it had been a week since he saw me and I had never been away from him for more than a weekend and that was only once. When he came to me, he put his head on my shoulder and coughed. I've never heard a cough like that. It was bad and even Grandma said it hadn't been that bad all week. I hurried home and told Garth we needed to get the nebulizer set up and give him a breathing treatment and I would take him to Urgent Care the next morning.

We couldn't find the albuterol anywhere. Now, you have to realize, my friend and I had spent and entire week organizing my whole house just before we left for St. Thomas. Every nook, every cranny in my house was cleaned and organized, including my medicine cabinet, but Gavin's breathing treatments were NOWHERE. While Garth was still looking for it, Gavin fell asleep from sheer exhaustion and was sleeping well, so I laid down beside him, wondering what I should do. Gavin coughed again and Garth came to his door and we looked at each other and I got up and got dressed and drove to the ER with Gavin while Garth stayed with our sleeping 7 year old. I got there about an hour after we landed at the airport.

Of course when we checked in, Gavin was awake and wanting down to play with the toys in the waiting room, no cough, no wheezing, another $150 copay for overreacting. I was silently hoping that he would cough, just so they could hear what we heard, but he never did. The nurses were cordial, but I could tell they were thinking "Let's just get this kid a breathing treatment to make Mom happy and send them home"...I was sort of thinking the same thing. The doctor came in and I told him the same story we had told over and over for months. Gavin had a cough. The same cough that every kid anywhere had that winter. Every time we took him to the doctor, it was an ear infection, strep throat, croup, or just a virus. One thing we never got was a chest X-ray. I could tell the doctor was a little concerned, he gave us a breathing treatment, and Gavin started coughing. The doctor wanted to get an X-ray, just to make sure it was croup and get some blood cultures just to make sure it wasn't pneumonia.

I remember the doctor coming in several times while the nurses were trying to get IV access for Gavin so they could draw labs. They had to poke him more times than I could count. At this point he was hysterical and screaming and coughing and even the nurses commented on the cough, it "didn't sound like croup". Finally, they got a little bit of blood, and the doctor made me come look at the X-ray. I'm a pharmacist, not a radiologist, but something was seriously wrong with that X-ray. All the doctor said was that he wasn't sure what it was, but that we were not going home and he was consulting Dr. Goldthorne. I remember him saying "mass" and "clean margins" and "very large". After that, everything changed. The doctor ordered a CT scan with contrast and it was done in less than and hour. Everyone was overly polite. The nurses would either avoid eye contact with me or they would put their hand on me when they spoke to me, like they were giving me their condolences. The doctor gave Gavin a dose of IV antibiotics while we were waiting for a room because he was assuming it was a pneumonia until we knew different. I held Gavin down, while he cried, all night long. I thought pneumonia was our worst case scenario.

The nurse walked us to our room at 5 in the morning. She was the one that was touching me a lot. I don't remember her name, but I remember her face when I asked her what room we were going to so I could text my husband and she told me we were going to the ICU.

The nurses in the PICU were very nice and got us all set up and asked me all of the same questions that I had been asked 100 times that night. Medical history, family history, when was his last bowel movement...After all of that, the charge nurse asked me if I had any questions. I asked her what they thought it was, to tell me the truth. The charge nurse and Gavin's ICU nurse looked at each other and said nothing. So I asked what we were hoping it was, what was the best case scenario. An infection turned out to be what we were hoping for. Our ICU nurse looked at the chart and told me that no one had read the actual CT report yet, but the preliminary results were that the mass was solid and not liquid. I had no idea what that meant. She said that if it were an infection, it would have been liquid, like pus, but that it was solid, the mass was solid, probably not an infection, but they didn't know for sure until the doctor read it. The look the nurses gave each other after that said that they knew for sure, but they couldn't officially tell me.

I texted Garth that we were in the PICU and that it was not an infection. I asked him if I should call people. At this point no one else even knew we had gone to the ER. He said to wait until 6 or 7 am, when they would be getting up, there was no reason to worry everyone if we didn't know anything.

Garth got to the hospital at around 7. Gavin had fallen asleep on the couch in his ICU room beside me so I propped him on some pillows with the stuffed turtle I had gotten him in St. Thomas and took a picture.



Dr. Goldthorne came in to talk to us at 7:30. I didn't know she was the pediatric surgeon until that morning. She was cheerful, but serious. She came in with her PA and told us that Gavin would not be going home for a while. She told us that he most likely had malignant neuroblastoma. She said that there were effective treatments, chemo and radiation, that it was something that they could "fix". She said we were going to have an MRI the next morning to show the extent of the mass and that neuroblastomas often have spinal involvement and that the MRI would tell us how invasive the surgery would be and if his spinal column was compromised.

I started crying. I tried not to while she was talking, but I couldn't help it. She put her hand on my shoulder and told me that crying was "appropriate". She said we would have surgery in 2 days. That we wouldn't know what it was exactly until the tests on the "mass" came back, which could take up to a week and that we would be in the hospital at least until then. This was serious, and it was "appropriate" to cry. After she left, we called everyone. I only called my mom, Garth called everyone else. I couldn't talk. I started wandering the halls of the hospital, looking and the people walking around, laughing, smiling, like nothing was wrong. Why was the world still turning? My heart was broken, how could anyone in this world possibly be functioning? Gavin was sick, he could die.

Of course everyone came up to see us, people lined up to feed us, to do anything for us they could. Gavin slept through it all, he had been up all night, getting poked, prodded and tested. He had no idea what was coming. It just wasn't fair.

That night, Gavin started really struggling to breathe. He got several breathing treatments and medications, but he just couldn't breathe. The next morning, they put him on a ventilator and did the MRI. They left him on the ventilator because he couldn't breathe on his own. The MRI showed that the mass was completely wrapped around his esophagus and was almost completely occluding his trachea. He also had a large mass of enlarged lymph nodes in his neck. Dr. Goldthorne said if we didn't bring him in when we did, that he may not have had even a couple of days.

The surgery was the next morning. A thoracic surgeon, Dr. Raine, joined Dr. Goldthorne. Dr. Raine came out first to tell us that he was doing ok. Dr. Goldthorne told us right after the surgery that she could tell it was neurablastoma by looking at it, so we didn't have to wait a week to know what it was. She put in a port for central venous access because we were definitely going to be doing chemotherapy. She took out 27 lymph nodes that looked suspicious and she was not able to get all of the tumor because it was right by the carotid artery and it wasn't worth the risk to take it out, but the tumor they took out was the size of a tennis ball.


She told us that the rest of the tumor should respond to chemotherapy. This was when everyone started referring to the "mass" as a "tumor". The pediatric oncologist was on vacation, but she would be there to assess Gavin "soon". Of the 27 lymph nodes, 21 of them were malignant. The preliminary tests on the tumor gave Gavin a "poor" prognosis.

Until then I had tried to stay away from the Internet. I tried not to look too deeply into what we weren't sure it even was. When I started looking, it wasn't good. We were in the PICU for 12 days. I can't even remember anything in between. I do know that our family and friends were there for us, even strangers. They all picked up the pieces, even while they were falling to pieces with us. Until the day we were discharged, Gavin had about a 10% chance of survival according to the literature.

Gavin had a few priesthood blessings while we were there. Two of our church leaders came to give him a blessing, one of them has a son that almost lost his battle with leukemia as a child. He told me something important about the numbers. They are wrong. Gavin either has a 0% chance or 100%, period, that's it. There is no 10% or 30% or this or that. He's either going to make it or he's not, and he is going to make it.

As we were packing up to go home, to wait, the oncologist came in with the results from a doctor in Ohio that sees every single neuroblastoma and stages them. Gavin was stage 2B, intermediate risk, we would start chemo in 2 weeks. His prognosis went from "poor" to "favorable" in 3 seconds.

So far, we have done 2 rounds of chemo. We have an MRI this Friday to measure the residual tumor to make sure it is responding to the treatments. It could be gone. We just don't know. Realistically, we still will have 2-4 more rounds of chemo, 21 days apart, with scans after every 2 rounds. Gavin is doing great. He loses weight after the chemo, but he gains it right back. He has Horner's syndrome either from the tumor, the surgery, the port, whatever caused it, he can't open his right eye as wide as the left and his pupil is much smaller on that side...it kind of looks like he is winking at you all the time. It might go away, it might not. It's kind of cute. Gavin has no idea he is sick.

Garth Lee has been a trooper, he really has. He is jealous of the attention Gavin is getting, but he knows that we all love him the same. He impressed me most when I took him to get his flu shot. Everyone who is around Gavin has to get their flu shot, it's kids like Gavin that die from the flu, that is a FACT. Garth Lee has gotten the nasal vaccine since he was 2, but since it is live virus, he can't get it this year because Gavin could get sick from it just because he has very little immune system. It is rare, but it could happen. We weren't going to tell him that he had to get the shot because of Gavin. I didn't want him to resent his little brother even more. We were just going to tell him that they didn't make the nasal vaccine this year. At the last minute, I decided to tell him the truth. He didn't even blink. He told me he would "do anything for his baby brother". We took him to get it, I was sure he would chicken out, but that boy hopped up on the table, rolled up his sleeve and took it like only the best big brother in the world could. He is a very special boy.

I have been blessed with 2 very special boys, and I intend to keep them both.

Over The Hill

Yep...that's me, I am officially in my thirties, and it's not too bad. I mean, I didn't wake up all wrinkly and having hot flashes, I'm just one day older than I was when I was 29, but I got some instant credibility May 14, 2011. People just feel like you are allowed to be more or accomplish more if you are older. In my VERY early 20's (2 weeks after turning 20) I got married. In my early 20's, I became a mother. When I was in my mid 20's, I bought my first house, I got a doctorate degree and then bought my second (forever) house. A little bit later in my 20's, I became an administrator all the while making 6 figures...pretty good, I'd say...for a kid.

We spend the first quarter of our lives wishing we were older, or pretending or trying to look older. There is a small period of time following that when we just are what we are, and that's ok. Then we spend the next 60 or so years doing the opposite of what we did the first 20.

I am what I am, and I am 30, like it or not. I'm going to do the best I can to live as long as I can in this time that I just am.

So what am I, now that I am 30: I'm mostly a stay-at-home mom, which some people find refreshing while others find down right ridiculous (which I find sort of hilarious in some situations)...personally, I fall somewhere between the two, but lean toward refreshing (most days). I am "Staff" as opposed to "Administrator" at work since I work pretty much never, it's hard to really be in charge of anything. My 10th wedding anniversary is in a couple of weeks and although I don't get butterflies every time the phone rings and it is Garth on the other line anymore, I would fight to the death for him and our family and our life together.

I squeezed a lot into my 20's, and sometimes it's hard to cope with reality after your total reality for so long is getting somewhere. When you spend 8 or 10 years in college, living in apartments and shopping in your parents' pantries, you get so focused on the goal that you forget that the journey you are in is a life you are living. A few days ago, Garth (hubby) was feeling kind of down, and I asked him what was wrong. He said he felt like life was passing us by. I have to admit, that when you spend A LOT of years getting somewhere, once you get there, it's rarely as awesome as your years of build up made it look. I realized and told him to open your eyes, life isn't passing us by, it's here, right now, if front of your face, THIS is life and we are living it. We are living the American Dream baby! It made us chuckle, but it also helped us to realize that we are truly blessed in life. I just got a little plaque that says "Blessings brighten when you count them", which is so true, so I am making an effort to count mine as often as possible and they always start with the 4 small hands and 20 tiny toes that poke and kick me most nights and the 2 strong arms that hold me when I need them most.

If my next 30 years are even half as awesome as the first, I'm one lucky girl!

Updates

It seems as though I have let my blog go, so here is my feeble attempt at an update:

So I have 2 wonderful boys (well, 3 if you count by 31-year-old)...Garth Lee got Student of the Month for December. He also improved his mile time by 3 whole minutes in PE, thus qualifying him for the "Cotton Patch Relays" that he and his relay team placed 13th out of 23 teams. Each leg ran one mile and Garth Lee was the first leg...unfortunately there were some horses somewhere along that mile that caught his attention and slowed him down a bit, but he really had a great time and got a medal and is very proud of himself as am I. We took our oldest on a date for Valentine's Day. We went to Main Event and we played pool, bowled, ate, played laser tag, did mini-golf, played more laser tag...you get the idea. We had a blast with Garth Lee, especially when his foot went over the foul line in bowling and he cried when he looked at the screen because, and I quote: "It called me a fool!!!"...no honey, the u in that word says "w", it said you got a F-O-W-L, the game has not resorted to name calling. He had fun and so did we. Garth Lee is doing very well in school, making good grades. We should be getting his first report card with real number grades soon, so only time will tell, but I have a hunch we will be headed back to Main Event after we get it ;-)

Gavin is everywhere at once. He took his first steps a long time ago, at around 8 months, but he has just recently started actually walking as transportation. Garth Lee didn't take his first steps until he was 11 months, but once he did, he just took off. So now we have had to break out the baby gates! His birthday party is this week and I am looking forward to that. He is having surgery for his undescended testicle Tuesday the 1st of March. It should be relatively straight forward, but will take 2-2.5 hours, which is a bit unnerving for me, but I'm sure we will all pull through with minimal pain and scarring.

Daddy has started working nights, still is Pedi. We like it so far, we get to see a lot more of him on this schedule. He is helping coach Garth Lee's T-ball team this year. We are the White Sox, and already our team is much better than last year, so hopefully we will win some.

I'm still doing what I do, home some, work some, clean some, sleep some, scream some, smile some...pretty much status quo, which is just fine with me.

November

I can't believe that this week is Thanksgiving. Garth has Thanksgiving off this year so we will be able to hit all the festivities ;) It will be a different year for us, so much has changed in our families since last year, both gaining and losing members. I think it will still be a great day, with lots to be thankful for and if nothing else, there will be eating...lots and lots of eating, and napping (please, Gavin, let there be napping)!

Garth Lee and Gavin are competing on new teeth, Gavin has 6 teeth now, 4 on top and 2 on bottom...Garth Lee has lost 2, but has gained 6, for a net gain of 4...so I guess Gavin is still winning, but Garth Lee's teeth are WAY bigger, if that counts for anything (which, I am sure he would say counts for a lot). Who knew 6-year-olds cut molars? I'll tell you who, I did...when I was pregnant with Garth Lee, I could tell you everything that babies and kids could/should do and at what ages it would be appropriate for them to do so...now, not so much...I still love my babies very much, but I am less obsessed with their milestones and what they are 'supposed' to do when...speaking of...Gavin is 9 months Thanksgiving day and he could take those first steps any day, hopefully by Thursday so we can surprise everyone (I said I was LESS obsessed not NOT obsessed)...he is cruising like crazy and he lets go and stands a lot until he notices he's not holding onto anything then he slowly sits down.

A drug rep came by the other day and she asked about some policy that she asked me about the last time she was here...I told her that the last time she was here was probably the last time I was here so I didn't really know...she gave me the most horrified look and asked if I was ok...then before I could even answer, she said "Oh, you must have small babies at home"...I said "Nah, I'm just really lazy"...she was really embarrassed, but it was priceless, the look on that woman's face was something I think I will never forget. I, of course told her that I did, in fact, have a baby at home, but I think she also learned her lesson about what you get when you assume...

Well, anyways, HAPPY TURKEY DAY friends...I know that I have much to be thankful for and for that I am forever grateful.

Updates

I HAVE NOT FORGOTTEN ABOUT MY BLOG! I am such a hater of those that ditched blogging for Facebooking, but I am sort of guilty of that even though it's not like I have been posting on Facebook 24/7, BUT I do have a button on my phone that takes me straight to Facebook, one for email, another for scriptures, one with news updates, even sports scores (making a phone call is the hardest thing to so on my new phone)...unfortunately, there is not an "app" that will type out all that has been happening in our lives and post it to my blog (bummer).

Since it has been forever since my last post, there are lots of things that have happened. Unfortunately, my dad's parents both passed away within 2 months of one another, which, the pastor said was probably "just fine" that Grandad didn't stick around too long after Granny passed. It was also fitting, as he pointed out, that we buried Grandad in perfectly crisp fall "football weather".

The gravity of the situation was completely lost on both Garth Lee and his 6-year-old cousin Reese. When we got to the cemetery, as everyone filed to the grave site in reverent silence, one of them shouted "Hey, isn't that where we buried Granny right there?" and "Weren't we just here?" They did pretty well, though, better than some of the adults involved, but that is an entirely different story...

Garth Lee just learned how to ride his bike without training wheels. I knew once we took them off he would just go and I was right. He is such a big boy. Sunday night after Grandad's funeral, he lost his first tooth, the bottom left front tooth...which was also the first one that popped in for Gavin about a month ago. The tooth fairy brought him $5, which is a lot, but I'm pretty sure she just brings that for the first tooth. Garth Lee is doing very well in school, although he has gotten his "folder signed" 2 times already this year...once for not listening in science class and another time for not getting his homework signed. He reads very well, now, hardly ever pausing to even sound out words and he always makes 100+ on his spelling tests. He still thinks toots are the funniest thing ever and he still has to kiss me goodnight or he can't go to sleep. He is really into playing Batman on the Wii with Daddy and playing with his best friend Jackson who rides his bike over to play with Garth Lee at least 3 days a week...he probably comes everyday, but sometimes we are not there. It is so cute, he will just let himself in and be yelling for Garth to come play and they play until his mom or brother comes over to get him.

Gavin is 7.5 months old now...he has his 2 bottom teeth (which almost got him weaned) and is army crawling all over the place. He won't get off his belly and he looks like a salamander crawling around on the floor, but he gets where he is going which I guess is the important thing. Gavin still won't take the bottle, but we have just given up completely on trying, so when I work, Daddy just brings him to me to feed and he has mastered the sippy cup (although it does seem like he spits out more than he swallows)...if you see the kid, you can definitely tell he has not missed many meals so I think he will be fine, plus it doesn't hurt me too much that I get to see them a couple of times a day when I am working.

Speaking of working...I have to brag on Daddy a bit here...When I go to work (about 4-5 days a month--12 hr shifts), Daddy has the kids. We have worked it out where it is his days off when I am working. When he brings Gavin up to me to feed, he is always showered (yes, showered...not too sure how that works, but I'm just going to stay out of that one), hair gelled (in a mohawk), with a fresh diaper. The other night, Gavin wasn't feeling good and we both went to bed early, but I set my alarm for early to make sure that Garth Lee's lunch got packed and homework was done. Garth had a softball game at 8, so he let Garth Lee go with him. They got home after Gavin and I were asleep. I woke up in the middle of the night (par for the course) and went to make Garth Lee's lunch and go through his book bag...got down there and Daddy had packed his lunch, signed off on his homework and reading, even did a practice spelling test with Garth Lee and put a note in his lunch saying "We love you, Buddy, hope you have a great day at school. Love, Daddy". Never mind that he packed Garth Lee a totally random lunch (main course was a cinnamon roll and a fruit roll-up), he gets major Daddy points for all that!

We almost moved to Big Spring, but decided that family was more important than anything else. A great side effect of almost moving is getting the house ready to sell. It's funny the things you will do for someone else that you don't do for yourself. I have made a concerted effort to keep our house at the same level of cleanliness that we got it to put it on the marker and so far it has been 3 weeks and I have kept the house totally clean, all 4200 sq.ft. of it...and you know they say that if you do something for 3 weeks it becomes habit, so I hope that I can stay on top of it because there really is a lot to be said for having a clean and organized environment...a lot of things go better when you live in order as opposed to chaos.

We had a wonderful surprise visit from my Sis-in-law, Sarah, and the kids for the weekend and it was so great! We miss them so much, but we really look forward to seeing them next time.

A lot of things have happened lately that have made me so grateful for what I have. Most of all, I am so lucky to have a loving and supportive family that is also VERY helpful in lots of ways (too many to number or mention). Although I am rarely grateful for trials in life while I am in the midst of them, I am always grateful for the clarity that follows and I will try and bask in the good rather than be weary of the bad that may or may not lurk around the corner.

Grandad Hans

Graveside services for H. H. (Hans) Hudman, 90, of Post will be at 2:30 p.m. Sunday in Terrace Cemetery with Rev. Grady Shytles officiating. Burial will be under the direction of Hudman Funeral Home of Post.

He died Thursday, September 30, 2010 in Lubbock. Hans was born on Dec. 27, 1919 in Garza County to J. B. and Josie (Yates) Hudman. He was the youngest of eleven children. He graduated from Post High School and served in the Navy during WWII. Hans married Maurine Russell on June 3, 1941 in Garza County. She preceded him in death on August 6, 2010.

He owned and operated Hudman Texaco in Post for over 50 years.

Survivors include three sons, Bob and wife Suzanne Hudman of Post, Randy and wife DiAnne Hudman of Lubbock and Bill and wife Carolyn Hudman of Plano; one sister, Berniece Cockrum of Ballinger; four grandchildren, Jenifer Hudman, Sara Hudman and Brooke Thomas all of Lubbock and Kenny Hudman of Plano; four great-grandchildren, Rachael and Reese Roberts and Garth and Gavin Thomas all of Lubbock.

Visitation will be from 1 until 2 p.m. Sunday at the funeral home.

Granny Maurine

"Graveside services for Maurine Hudman, 90, of Post, will be at 2 p.m., Sunday, Aug. 15, 2010 with Rev. Grady Shytles officiating. Burial in Terrace Cemetery will be under the direction of Hudman Funeral Home of Post.

She died on Friday, Aug. 6, 2010 at Golden Plains Care Center. She was born April 30, 1920 in Pilot Point, Texas, to Robert and Lena (McSpadden) Russell. She was a graduate of Southland High School. She married Hansford Hudman on June 3, 1941 in Garza County. She owned and operated Maurine's Flower Shop until her retirement.

Survivors include her husband of 69 years, Hansford Hudman of Post; three sons, Bob Hudman of Post, Randy Hudman of Lubbock and Bill Hudman of Plano; four grandchildren, Jenny Hudman, Sara Hudman, Brooke Thomas and Kenny Hudman; and four great-grandchildren, Rachael Roberts, Reese Roberts, Garth Thomas and Gavin Thomas."

Long Time, No Blog

Pictures first for those of you who lose interest quickly and don't really want to read about our summer:

We stated at National Harbor, right on the Potomac River for our D.C. trip, this is a picture of the walk from our hotel to the river. Those teeny people are Garth Lee in between Mimi and Papa Randy.

There was a "buried" sculpture on the shore called "The Awakening" and Garth Lee had fun playing in/on it.

Garth Lee's signature pose on one of the docks.

One of Gavin's naps with Garth wearing the wrap, a nice break for Mama.

He was OUT...so cute!

Our reason for going...Garth Lee decided he wanted to go to Washington, D.C. to see the "original" flag, and here was the exhibit. (No photos were allowed of the actual flag)

Smithsonian Air and Space Museum

"The lawn"

The famous ruby slippers at the National Museum of American History...periodically, someone has to clean each individual sequin (not actual rubies) of the slippers.

Each state has 2 statues in the Capitol and here we are with Mr. Stephen F. Austin himself. An interesting tidbit of info is that the other states made their statues very large and grandiose, that Texas is actually the only state that made their statues life sized, which is very interesting considering everything is supposed to be bigger here.

Washington Monument

The oldest existing statue of the Father of Our Country, located in the Capitol building.

Love Garth Lee's face here

Lincoln Memorial...there are A LOT more steps than it looks like in this picture...This was the one time that Papa volunteered to stay at the bottom with Gavin in the stroller.

Arlington National Cemetery

Mimi and Gavin having a conversation on our river cruise

Gavin giving Mimi kisses

Bad angle?

Mommy, you did not seriously just post that picture of my thighs, did you?

Well, at least get a picture of my good side :-)

Gettysburg reenactment soldiers

So one of my friends threatened to delete me from her favorites (literally and figuratively) if I didn't update my blog, so I better get to it! We have had quite the eventful summer, we took 3 major trips: In June we went to Washington D.C., in July we went to Utah and a couple of weeks ago we went to San Antonio.

Of course all my pictures have yet to be downloaded, but I do hope to get them on here ASAP.

Gavin is 6 months old now, which is hard to believe. He is sitting up very well and I think he will probably be crawling in a couple of weeks. His biggest loves are his jumper/exersaucer and to nurse. I just came back to work after having close to 2 months off and he is now on a bottle strike, so Daddy is having to bring him up to work to nurse. Luckily, he is a good eater of pretty much any baby food and he also loves baked potatoes and little baby crunchy snacks, so I'm pretty sure he will survive one more day "without" me (I'm sure I will see him at least 2 more times today to nurse ;-). Gavin hasn't met a food he doesn't like, he loves his garden veggies and he hoovers squash, of course he also loves the fruits. He is such a well mannered baby, always quick to smile at anyone willing to look. His only issue is sleep and probably according to everyone but me, his sleeping issue is actually my sleeping issue, he does exactly what I've trained him to do...sleeps right next to me nursing on and off all night long. Go ahead, judge me, at least I am a little more confident now since I can at least argue back that this isn't my first 'rodeo' and yes, I do know EXACTLY what I have created because I already have a 6-year-old version :-)

Speaking of the 6-year-old...Garth Lee is now officially a first grader (and no longer sleeping right next to me nursing on and off, thank you very much). He just finished his first week of school and he is doing a little better at getting up in the mornings. After the first day he said he had fun BUT he didn't like that they didn't get nap time or recess anymore. They still have P.E., but not the same recess they had in kindergarten. He always got in trouble during nap time last year because he never slept and was disruptive so I really didn't get the longing for that except that he was just tired from not being used to getting up in the morning. He likes his teacher and has some of his old friends with him from last year, so I'm pretty sure he will do great.

Our Washington, D.C. trip was AWESOME! We went almost everywhere we could. Gavin traveled great, never cried on the plane. He was a good little travel companion. He didn't love the stroller, but he still rode in it a little and other times was either carried or in my wrap (on me or my mom, and even on Garth some). My parents went with us and it was truly an awesome trip, everyone had a great time and we learned a lot too. I never would have attempted this trip with a 4 month old with just Garth, me and the kids, so I am sooooo grateful for my parents for going, making it not only possible, but actually VERY enjoyable.

We went to Utah in July for Garth's Dad's wedding in Logan. It was a 21 hour trip to Clarkston, UT and there was less than half an hour of crying and at least half of that was me ;). Gavin and Garth Lee did so great on the looooong trip. We met a lot of nice people up there as Betty Ann's family was having a reunion/baptism/blessing/wedding so everyone was there and they were so welcoming and nice, it was so great. Clarkston is a teeny town, but it was so beautiful! We drove to Highland, UT after the reception and stayed the night with Garth's cousin Michelle in their new 12k sq.ft. house, it was AMAZING and we had soooo much fun with them, even seeing one of my missionary friends from 10+ years ago. When we left there, we went south to St. George, UT to stay with Garth's Aunt Tammy for a couple of days. It was HOT!!! We had a great time with the family there and it was sad to leave. We took 2 days coming back and it was also enjoyable, even the kids did fine, but we were so glad to get home.

We went to San Antonio to visit Kelton and his family and to see their newest addition, Auva Mae, be blessed and to celebrate Garth lee's 6th birthday with his cousins there. Garth Lee got to go to Six Flags with Autumn and Daddy and to Schlitterbahn with everyone but me and Sarah and the babies. It was so great to see them and to meet baby Auva. We had such a great time and we can't wait to see them again when they come visit us, hopefully soon!

Thanks everyone for such a great summer that I will never forget :-)