New York, New York

I've been trying all night to upload pictures of Nate's early birthday party for a fun post, but I'm having no luck because the internet connection is so slow here.  So, I'll save that post for another day.

We arrived in New York, yesterday evening after a pretty uneventful plane flight (uneventful plane flights are a good thing).  We were picked up by a car service, courtesy of The Corporate Angel Network, another amazing organization that we have come to know through this journey.  Unfortunately, they were unable to locate a corporate flight for us but helped me change our 7 1/2 hour long flight with two stops to a 4 1/2 flight with no stops.  We flew into a different airport that was further away, so they offered to have a car service pick us up.  I didn't even know this was an option.  Really, all of these organizations are amazing!

Speaking of amazing organizations, The Ronald McDonald House here is incredible!  It is just like a hotel, but better, in my opinion.  We have a hotel sized room with two twin beds, a pull out couch and a private bathroom.  The house has a giant play room, a dining area that has several different, shared, fully stocked (plates, pots, utensils, etc.), gourmet style, kitchens and a beautiful family room area.  We have a mail box, a cabinet in our kitchen and a giant bin in the refrigerator and freezer to keep food.  They frequently have meals brought in from generous, outside groups.  The whole house is being beautifully decorated for Christmas and Nate was handed 2 new toys within seconds of walking in the door (we've been warned that at this time of year the kids can get a little spoiled, because lots of toys are brought in from outside organizations).  We are a short walking distance from the hospital, but the RMH also has a shuttle to the hospital available.

When we were given the tour, I held it together through the whole thing, but started bawling as soon as we got back to our room.  It's just so nice here!  In college I used to take collected pop can tops to The Ronald McDonald House in Tucson and one time I helped clean up after a family meal.  I remember pitying the families.  It was so sad to me that all those families had a sick child and had to be away from their home to get care for their child.  Are we really that family now?  I guess we are...and I'm so grateful to have the opportunity to travel with our son, to the best surgeon in the nation, and to have such a beautiful place to stay.

After our tour, some lovely friends picked us up and took us for a delicious BBQ dinner. Nate was a pretty good boy at dinner, but got a little wiggly at the end, so we headed home to get some sleep. We spent all day today at the hospital meeting with doctors...but that's a post for tomorrow because I need to get to bed. Goodnight from New York. I promise to write all about our meetings, tomorrow.

Giving Thanks

I thought I was thankful last year.  I didn't even come close.  Cancer has taken many things from us, but I feel like somehow, this is a gift we have been given.  A gift I never wanted and wish I could  take back, if it meant my little boy wouldn't have cancer anymore.  It is not returnable, though, so I will enjoy it.  I feel like my super hero of a little boy has given me the super power to enjoy every, single, thing in my life.  Everything beautiful is amplified.

We are surrounded by THE most awesome people on this planet.  I know this must be the case.  People who have dropped everything, bent over backwards, and sacrificed to help our little boy and our family when we could not do it ourselves. I will never, in my life, be able to thank you all enough.  Chris and I keep joking that we are going to have to be REALLY good people after all this is over...but we are not joking.  For the rest of our lives, we will always strive to make a difference in the lives of others that you all have made in ours, because now we know what it truly means. 

So, on this day of Thanksgiving, I am brought to my knees with gratitude.  I am able to spend this day with my family, all of my family.  I now know how truly precious that is.  I thought I was grateful for my family last year.  I didn't have a clue.

One of my dreams, is that Nate will pass this grateful super power on to all of you.  That you may look around and see the beauty that is around you.  That you may really, truly appreciate your friends, family and especially your children.  I don't want any of you to ever be in the position that we are now, with a sick child.  If Nate's story can amplify the beauty in your life, without you having to suffer the pain, if cancer can give you this gift also...well, it still won't be worth it...cancer can go eff itself...but it will certainly make our journey a little bit sweeter.

Scan Day

Nate had a CT scan today to assess his tumor prior to surgery. Usually scans make me into a giant stress ball, but I was really not too worried about this one. It wasn't the full battery of tests, so he didn't have to be put under anesthesia, and we pretty much knew what the scan would show us.

As the scan approached, I actually started to get more worried about getting Nate to lie completely still for the scan, than I was about the scan results. We went to clinic bright and early for a blood check. All his numbers were good. He is making his own platelets again, so he doesn't have to rely on transfusions, for now, woohoo! Then, we headed over to "Nate's big hospital" for the scan. Softie got a CT scan first in the play CT machine. There are so many of these cool things out there for kids with cancer and their siblings. I have mixed feelings about these things. First, they are SO cool and totally invaluable tools to help these kids through this fight. On the other hand...how messed up is it that there has to be a toy CT machine, and books and cartoons about kids with cancer?!?! Kids should not have to be dealing with this! But they are...so, we are grateful for the play CT machine. Softie held very still, like a good boy, for his scan that Dr. Nate gave him. Then Nate held very still, like a good boy, for his scan too. We were out of there and on our way home for fun, by 10:30am!

Nate is 2...almost 3, and they really try to push putting him under anesthesia for these scans when you schedule them. I had to fight with the lady on the phone and insist that it was a short scan and I knew he could...and would hold still for it. There was NO WAY I was going to let them put him under. He did great and there was no risk of anesthesia or waking up a groggy boy afterwards. He just hopped off the table and we went on with our day.

I got a call from the doctor this evening with the exact results we were expecting. The remaining tumor that is on the edge of his liver has shrunk, a little, but still needs to be taken out...as expected. Everything else looks good. So, off to New York we go. We leave next Tuesday, 11/29 for an appointment on 11/30. Nate's surgery is then scheduled on 12/5. We are so, so thankful that it looks like we will have a Happy Thanksgiving with family and NOT in the hospital!

Nate's Blood and My Gut

I published the last post and started to head to bed when I heard a panicked, "Mommy!" coming from Nate's room. I ran down the hall, not sure what I would find, to see my sweet, little boy standing at his doorway in his one piece monster sleeper jammies and blood covering his entire face. I yelled for Chris and grabbed a baby wipe to squeeze his nose as I saw that there were several pools of blood on his pillow and bed. Chris and I took turns squeezing and cleaning. These nose bleeds are truly one of the things I hate most about this treatment...because Nate hates them too. He screams, hits, kicks, cries and begs us to stop the entire time were squeezing his nose. Some nose bleeds stop quicker than others. So, I usually start off with a 2 minute hold, then go to a 5 minute, then a 10 minute if the previous two don't work. If the 10 minute hold doesn't work, we're supposed to call the doctor and probably bring him in. It was 3am and we knew if we had to bring him to the ER, we would both have to go (one to drive and one to hold his nose) and we would have to call someone to sit with Wes and Ellie. So, I think we tried a couple 10 minute holds before we gave up and called the on call doctor. She said to try holding an ice pack to his nose while squeezing it, but if it didn't stop in the next few minutes, to go to the ER to be admitted for platelets. We had an appointment at the clinic for platelets in less than 7 hours...we just had to get this thing to stop for 7 hours. We finally, after about an hour and a half from start to finish, got it to stop and tucked Nate into his freshly cleaned bed. Literally 3 minutes later, just as I was sitting down on my bed, we heard a giant sneeze come from Nate's room. I booked it down the hall again to find Nate with a GIANT blood clot on his face. He said, "Mommy, I sneezed a strawberry!". I sat him up and the blood started flowing again. We decided to squeeze his nose with an ice pack for another 10 minutes and if it didn't work to call my mom to sit with Wes an Ellie so we could head to the ER. It didn't stop.

Chris and I took turns squeezing and getting dressed and ready to go while we waited for my mom. I was sitting at the kitchen table putting my shoes on when Nate came toddling down the hall (have I mentioned how stinking cute he is in those one piece jammies?!?!)...with no nose bleed! My mom got there and we all sat around the kitchen table, at 3:30am, and stared at Nate's nose while he went through the Target toy catalog and showed us all the things that Santa is going to bring him. We watched him for about 20 minutes and decided to send my mom home and make one more attempt at getting through the night without another nose bleed. Thankfully, we did.

Nate and I headed to the clinic where we found out that his platelets, hemoglobin, and ANC had all tanked over the weekend, but you would've never known it by looking at him. His platelets had been 55 on Friday (normal is 150-400, but they don't usually transfuse until they get to about 10-20), Monday they were 9. So, we were at clinic all day long on Monday for Nate to get platelets and blood...it's a very long process, and the doctor said he didn't need to see Nate for a week, on this coming Monday. Now, this sounds awesome in theory but I was kind of nervous about going the through the weekend without knowing what any of his numbers were doing. I followed my gut this time and made the appointment for Thursday.

We went to clinic on Thursday and his hemoglobin and ANC were great, but his platelets had only come up to 12! He needed more platelets. I'm very thankful that I followed my Mommy gut and I have definitely learned not to second guess it. If we had waited until Monday to come in, Nate certainly would have had another bad nose bleed. They are truly horrible and we all want to avoid one at all costs.

Here are some facts about blood, platelets and donation that you may not know (I didn't, before Nate's diagnosis):
1. Platelets are yellow
2. Someone needs blood every two seconds.
3. Only 37 percent of the U.S. population is eligible to donate blood – less than 10 percent do annually.
4. One unit of blood can be separated into several components: red blood cells, plasma, platelets and cryoprecipitate.
5. Transfused platelets only last 2 to 3 days. Many cancer patients must get these transfusions every couple days until their body starts to make them again.
6. Donated platelets can only be stored for 5 days.
7. Children being treated for cancer, premature infants and children having heart surgery need blood and platelets from donors of all types, especially type O.
8. Blood centers often run short of types O and B red blood cells (Nate is O negative).
9. Shortages of all blood types happen during the summer and winter holidays.
10. If all blood donors gave three times a year, blood shortages would be a rare event.

I always knew that donating blood was a "good thing to do" and I've donated a few times in my life, but I never realized how truly important it is. Sometime soon, when things slow down (ha!) I would like to coordinate a blood drive in honor of Nate's fight. I hope you'll all help me with that. In the mean time though, there are lots of places to donate. Check out unitedbloodservices.org. Also, consider donating platelets. You can donate platelets more often than blood because they take out the platelets and put your blood back.

Ok, off my soapbox for now. Nate continues to do and be incredible! He has his appetite back and Thursday he had 3 waffle for breakfast and ate 2 lunches (one at the clinic and one with Mommy, Grandma and Linde after clinic). He's packing on the weight so he can be big and strong for surgery. He's smart and funny and so, so totally cute even when he's being naughty (which is a lot of the time). I sort of feel like I'm on a natural high all the time right now with my family home and happy. It just doesn't get any better!

Cisplatin Shmisplatin

We are still home!!! It's pretty crazy that I've started to feel like we've been home too long. This is the longest we've been home after a chemo round since the 2nd round (the outpatient round). Nate has been doing awesome! This round is the same exact drugs and doses that he got for the 3rd round. The 3rd round where he threw up so much and wouldn't eat at all and got so dehydrated that he looked like a skeleton and wouldn't walk, and barely talked or even lifted his head.

We brought him home at 1am Sunday morning. He threw up more on Sunday than we would have liked, but was happy, energetic and running all over the house. He was eating little, but drinking a ton of milk. I was nervous but knew we would be taking him to the clinic on Tuesday to make sure he wasn't getting dehydrated. After Sunday, the throwing up almost stopped. He has basically thrown up one time per day until yesterday, which is so awesome! Yesterday and today, he hasn't thrown up at all!! His appetite isn't that great but I have seen it start to improve the last couple days. He has continued to eat a bit though and has been drinking a TON of milk.

I took him to the clinic on Tuesday and Friday last week and his numbers were great each time and we were headed back HOME in about an hour. Very few of our clinic visits have not involved being there most of the day...and most of them have resulted in admission. So, it's very nice to go for a quick check and head home! His numbers (ANC and platelets) did take a dip from Tuesday to Friday...but his ANC was still good and the platelets weren't low enough to transfuse yet.

We are headed to the clinic in the morning for another blood check...and most probably a platelet transfusion. Nate has had a nose bleed off and on ALL day today...one bad one that we weren't sure if we were going to be able to stop (but we did, after holding him kicking and screaming and pinching his nose for about a half hour). So, I will actually be glad to sit at the clinic all day to get Nate his platelets as long as he'll have less nose bleeds. I'm also interested in his ANC because sometimes when it bottoms out, kids will get a "neutropenic fever" just because they have no immune system and not because they have infection (this is what happened to Nate after the 1st round). This fever would put him in the hospital until his ANC recovered. We are all too familiar with the fact that Nate can go from being awesome one day, to being in the hospital the next, so we're trying to enjoy each moment we get at home. We keep looking at each other like, "do you believe this?!?". He was just so, so sick last time...and almost not sick at all this time!

This little boy's body is just so remarkable. The word "resilient" doesn't even begin to cover it. He is truly, Super Nate! We just HAVE to know that he will totally beat this monster. his body is just too smart for this disease. When he feels better, his body tells him to eat...and eat a TON to keep him strong and healthy (when he's feeling good I CAN NOT keep him out of the fridge and pantry...and I don't try). Once his body has experienced a set of chemo drugs, it's like it learns how to not make it so hard on him the next time. It's just miraculous to watch him. He's running around this house playing with his brother and sister and wreaking havoc like he didn't get pumped full of poison a week and a half ago.

Even on these spectacular days...cancer sucks...and Nate takes it all in stride. He starts his day with 3 yucky medicines and a shot...and ends his day with more yucky medicine. He has to lie still during the painful removal and replacement of his dressing once a week. This weekend he's also had to endure long periods of time having his nose painfully pinched to stop his nose bleeds. Then there was the 4:30am wake up call for vomit AND diarrhea all over the bed. All that...and this was a week from heaven as far as we were concerned because Nate was mischievous, sweet, goofy and spunky. Nate was Nate! Really though...it sucks that I have to be thankful that my son is still acting like himself, despite what he goes through every day.

Tonight I cleared out all of Nate's summer clothes and did some organizing in his room. I cleared out his drawer full of cloth diapers (one of the many things we had to give up when cancer took over our life) and filled it with all the medical supplies we have to use every day for Nate. It made me so sad to pack up those cloth diapers. Cloth diapering was important to us. We started when Wes was born and have continued with Nate and Ellie. We have had at least one cloth diapered baby in our house constantly for the last 5 1/2 years...until July. It makes me angry that we've had to give up so many things that were very important to us to make room for cancer. Cleaning out this drawer was a very physical expression of everything we've been giving up for the past 4 months, and replacing with "cancer stuff"...and it made me sad.

My Heroes

Any time I was asked to write about my hero as a child, I always wrote about my mom. I didn't really know the extent of her strength back then, but I knew she was heroic.

My family has been affected by a cancer before...addiction. Really, we've always been affected by it. My father was an alcoholic, probably his entire adult life, until it took his life at the age of 58. My mom was wise and brave and got us away from that situation, the best she could. Then, the cancer spread to my brother...a childhood cancer. Really, the situation we faced back then and what we are facing today are so completely similar, it's sick.

My brother was 16 years old...and he was sick. There is no known cure...only treatment. Treatment that does not have a very high success rate. Really, he had a much lower chance of survival than Nate does. My mom was brave and she was strong, when she really wanted to hide under her covers and never come out. She also used a whole lot of four letter words...I wonder where I get it from?! She found the best course of treatment she could for her baby, jumped in with both feet...and prayed.

She had to give up absolutely every idea she ever had of what my brother's path would be. His path had totally changed now. She traded in thoughts of high school proms and graduations for lots of stinky, recovering boys sleeping on our floor and sobriety anniversary chips. She let him stay out until all hours of the night forming bonds with these kids that were fighting the same fight as him. She bought him cigarettes because, crazy as it sounds, smoking is an important part of recovery for a lot of kids.

My brother had to do all the work...and still does to this day, but my mom was the strength and the backbone behind it all. We had no idea if this treatment would work for him. We operated on faith alone. Many, many kids did not make it out the other side. Addiction took many of their lives in one way or another. My brother is one of the lucky ones. Lucky that the treatment was the right one for him and that the hard work he does every day, has paid off.

My brother will have 15 years sober, next summer. He is a spectacular man, and has a beautiful wife and son. His life is different from the life I bet my mom had envisioned for him...it's better. I'm sure she never wanted her son to struggle with addiction. Yet, without the struggle, he would not be able to help all the people he is helping today that are going through the same thing. He would not have met his wife. He probably wouldn't be the amazing, honest, down to earth guy that he is. How could she ever have imagined this amazing path for her son.


I tell this story because it keeps me going on my hardest days. We LIVED through this. My son is only 2 years old and while I didn't think I had any preconceived notions about where his life was headed, I guess I did. My plan certainly didn't involve cancer. When Nate's treatments are over, cancer will never be completely out of our lives. Even after he has several years of remission and is considered "cured", he will always have to be followed for whatever effects the chemo and radiation leave behind. This was certainly never in my hopes and dreams for him. Then I remember my mom and my brother. There is no way that I can possibly foresee the beauty this will bring to all of our lives. So, I remember my heroes. My mom, my brother...and my son. I cling to their strength. For whatever reason, this is the path that God has chosen for us, I have to bravely walk along, one day at a time, and enjoy the beauty along the way.

To my mom...I'm so sorry you are having to go through this with us. I know this is as hard on you as it is on me. You have been through too much in your life already. Some things are just not fair! You deserve a much easier road than this. Thank you for standing with me in this fight. I love you more than you'll ever know.

Home Again!





Nate's home!! Yay! We love when he is home!  We checked in to the hospital at 10:30am on Tuesday and once again, chemo didn't start until 11:30pm!  There just has to be a better way to do this.  Nate got 4 days of chemo this round and his last dose was on Friday night.  Then, he had to be in the hospital for 24 hours of post hydration.  That meant that Nate would not be cleared to be released until 1am on Sunday.  Normally, we would have just let him sleep through the night and come home first thing in the morning. We are now hospital experts, though, and have learned that a "morning" release actually means afternoon by the time the doctors finish rounds and get around to discharging him.  We figured that bringing Nate home at 1am is really no different than picking up sleeping kids from Grandma's after a date night.  We're night owls anyways, so we enlisted the help of Grandma and Linde to sit at the house while Wes and Ellie slept, and I headed down to the hospital to help Chris bring our little boy home at 1am.

Chris had the doctors and nurses get everything ready for Nate's departure, so when I got there they just had to unhook him from the IV, we put his jammies on and put him in the stroller.  He woke up right as we were leaving his room and he was hilarious.  He had gotten some Ativan, for nausea, right before discharge and it made him a little loopy.  He was happy, full of life, and ready to get home.  We drove home in almost complete silence and I thought he had fallen asleep, until we passed Peter Piper Pizza and he demanded to stop for some pizza and fun.  I guess he doesn't really understand what 1am means.

He was excited to see Grandma and Linde when we got home and was geared up and ready to play.  It took a little convincing for him to go to bed, but soon we were all snuggled in to our own beds.  He did wake up vomiting at 5am, right when his next dose of anti-nausea medication was due.  We got him cleaned up and got him some medicine, but he refused to go back to sleep unless Mommy slept with him...so I crawled in.  Good thing the boys have full size beds!

He has been ok this morning.  He has thrown up much more than we would like and it's been a balancing act getting medicine in him without making him throw up, but he is happy and energetic.  Wes and Nate have been playing so incredibly nice all day...maybe they are both ill...or maybe they are starting to miss and appreciate each other.  It was definitely worth bringing him home at 1am so that he could get a full day at home playing with his brother.

He ate a bit of lunch and a snack and has so far kept it all down.  I am very cautious.  I seriously have post traumatic stress disorder from round 3.  I'm second guessing everything about how much he is eating and drinking and how much he is keeping down, but Chris and I agree that, so far, he is handling these drugs 100 times better than he did the last time.  We have appointments at the clinic on Tuesday and Friday.  I want to make sure they stay on top of him and if he starts to have any dips in his electrolytes he can get fluids at the clinic or at home and not hit rock bottom like he did the last time.  If, for some reason, he were to start throwing up more tonight or tomorrow, I will take him in tomorrow.  I refuse to let what happened to him last time, happen again...we know better now.

Great news!! Nate never has to have cisplatin again!!  That is so awesome!  Cisplatin is just a nasty one.  It is THE WORST chemo drug when it comes to nausea and vomiting (which we know all too well), and can cause kidney and hearing damage.  So far, his kidneys seem to be doing fine.  I'm not sure when he will have another hearing exam to see if he lost any hearing.  Many kids that have cisplatin, have to wear hearing aides.  We will find out soon enough.  I'm just happy to not have to give him that nasty drug anymore!

The Love of my Life

Fifteen years ago, I went to a punk rock show with a skinny boy I barely knew. He was too scared to go to the concert alone with me and brought along one of his friends. I drug those boys on an adventure all over the city that day to hunt down tickets for the concert, meet the band and get our CDs autographed and finally to see the show. Looking back, they probably thought I was nuts (cause I am), but apparently that skinny boy liked my kind of crazy because 10 years ago, today, he married me.

Chris and I have grown up together. We started dating when we were 18 years old. I look at 18 year olds now and they seem so young! In a couple years, we will have spent more of our lives together than we have apart. That sounds crazy...but really, I can barely remember life without him.

We fell in love driving around in my '85 Chevy Cavalier and sitting on the curb in front of our parent's houses. We talked for hours and hours and hours...we became best friends.

We have been through some crap in our 15 years together. Crap that we weren't sure we were ever going to get out of. The one thing we knew for sure, though, is that we would come out of it together. Our family is certainly being put to the test now, but once again we know we will come out of this together.

I am very proud of our marriage. We took the little bit of luck we were given in finding each other and have worked hard to make something great. My husband is a great man. He is a hard worker and he loves me and the kids very much. He is a totally "hands on", fabulous father and is truly my partner in life. We understand each other completely and we make a great team. He is a very funny guy with my same, strange sense of humor and is always making us laugh. Did I mention? He likes to do laundry! I am truly blessed.

I am in the hospital today with Nate and Chris is at home with Wes and Ellie. We don't even get to see each other on our 10th wedding anniversary. Cancer may have stolen this day from us, but it could never steal our future and that makes us strong.

Happy 10th Anniversary sweeter! I don't want to be walking down this road, but as long as you're by my side I know we can do anything. I love you more than you'll ever know.

P.S.
Enough of the mushy stuff. You want to know how Nate is doing. So far, he is doing well. He has tons of energy and still has a decent appetite. He threw up once today, but only because I had to give him some oral medication...the kid has a very strong gag reflex. Chemo will be starting soon. I am still cautiously optimistic that he will handle these drugs better than he did the last time, but last time it took a few days to really hit him. So, we shall see what tomorrow holds. Please continue to send good thoughts and prayers. Thank you!

A Fabulous Delay

I can't believe I have not written in so long. I've been so exhausted (first from stress...then from fun) that I found myself conking out on the couch every night before I got a chance to sit down at the computer. I'm starting to feel some anxiety from the build up of thoughts in my head that need to be written down. So, here's what we've been up to.

I took Nate to the clinic last Tuesday for a count check, hoping to start chemo. His ANC was not high enough, but everything else looked great so we were told to come back Thursday to try again. While I was happy for an extra couple days at home, the whole situation caused a major build up of stress for a number of reasons. The number one worry I had was that Nate may not be able to get his surgery done in New York. The further chemo gets pushed back, the closer the surgery gets to Thanksgiving and we know the surgeon isn't available around Thanksgiving. Chris and I feel very strongly about getting this surgery done in New York and would be devastated if there was a conflict. My second worry was Halloween. I just wanted Nate to be home, even if he wasn't feeling well, so that I could at least be there to take Wes trick or treating. Starting chemo on Thursday would mean Nate would be coming home late on Halloween or the next day...maybe this seems silly, but it was stressful for me. Then I remembered that I had volunteered for Wes's fall party at school on Thursday (thinking Nate would already be admitted and my mom could sit with him at the hospital for a couple hours) and now had to figure out who could take Nate to the clinic for a chemo admission appointment which is not a simple appointment. Not to mention that delaying chemo and the surgery now puts round 6 of chemo right at Christmas and we are trying to be hopeful that Nate will be home and feeling good for Christmas. I was basically a giant stress ball but decided to take our free day by the horns.

Nate and I went to pick Ellie up from Liz's and Nate got a rare (these days) chance to play with his cousins. I also made a quick call to the kid's pediatrician. They still needed flu shots and Ellie was due for her one year check up...she CAN NOT get behind on her immunizations with a brother with cancer in the house. Usually, the office requires you to make "well visits" weeks ahead of time but were nice enough to squeeze us in. I called my mom in for back up (thank God), got Wes out of school early and lugged all three kids to the doctor. Ellie is a big healthy girl as predicted and everyone was super brave for their shots. Wes really didn't want to get a shot but when I reminded him how brave Nate has to be EVERY day...he didn't even blink an eye. As I was putting Ellie's diaper back on after her weight check, I noticed some spots that were forming blisters on her legs! We had also learned a couple days earlier that Jaime's sister had been diagnosed with chicken pox. Ellie hadn't had any contact with her, but Johnny had...and Ellie had contact with Johnny. It was a long shot but when a brother with cancer is involved, you have to be sure. I then had to hold down my poor screaming, kicking baby girl while they tried to take her blood for a chicken pox test...they never did get the blood. I did remember that she had been playing in the grass the day before and I had to rescue her out of an ant hill....we prayed for ant bites. Can you see why I was a little stressed?

Wednesday I worked and Nate was super excited to go to the babysitter. Funny how the little "normal" things we took for granted can now make us so incredibly happy. We made a plan for Thursday that included Daddy and Grandma taking Nate for his chemo admission appointment and I took Ellie to Tracy's so I could help at Wes's school party then head to the hospital. I was sitting in Tracy's driveway ready to drop Ellie off when I got the text from Chris that Nate's counts still were not high enough and we'd have to come back on Monday...Halloween. I kind of lost it. All the worries of Nate's surgery and the upcoming holidays and trying to make them as normal as possible for my family came flooding in. Once again, what would I do without Tracy. She hugged me, listened to and understood my fears and reassured me without preaching. I really feel like I left the weight of the world I'd been carrying around, on her driveway and left ready to tackle a "free" weekend. I also told Chris that we would not be going to check counts at the clinic on Monday...they could see us Tuesday. They were fine with that. I was off to Wes's school party with the good news that Nater was going to be HOME for Halloween!

Boy, I guess Nate's bone marrow knows what we need more than we do. We all really needed the fun weekend we had. We all needed a break...desperately...after rounds 3 and 4...so did Nate's bone marrow apparently. So, we got the break we so desperately needed. We did our normal Thursday mall lunch with Grandma, complete with a carousel ride. Wes had Friday off of school, so we went to the aquarium and Nate ate his way through Arizona Mills. We took the kids out to dinner and a movie Friday night. Saturday, while Daddy worked, we gathered last minute details for our family Halloween costume then met Daddy for lunch. Everyone got a good nap and got ready for a fun night at Grandma and Linde's house while Chris and I went on a date for an early anniversary celebration. Sunday we got up bright and early and headed to Tolmachoff Farms with my friend Jen and her family for some corn maze and pumpkin fun. We grabbed some lunch, went home for naps and then Jen and family and Grandma and Linde came over for pumpkin carving. Each kid got their own jack-o-lantern and Nate insisted on a Super Nate pumpkin. Monday, while Wes was in school, we met friends at the park for lunch and playing. When Wes got home from school we all got our costumes on and went to my store to grab a couple groceries and show off our costumes. We got home in time to eat a quick dinner before Daddy got home to man the fort while I took the kids out trick or treating around the neighborhood. After an hour or so, we headed over to Grandma's house for some fun with cousins until everyone started to melt down from too much candy and too little sleep. Whew! Now, that's what I call a fun filled, make the most of every moment, weekend!

I can't even tell you how much we all needed this weekend. Personally, I feel ready to tackle this cancer again...I was just so weary. Nate really made the most of his time home. He is a total fire ball! He had SO MUCH freaking fun, it was insane! I love that fiery little boy so much and I hate when the chemo makes him go in to hiding. All day Monday he insisted I call him Charlie Brown and he called Chris and I, Linus and Lucy. He's 2!! How funny is that?! After our first couple trick or treating houses, Chris asked if he was done and he said, "No! I need to fill it [his pumpkin bucket] to the top!". He just really "got it" this year and had so much fun. I am so grateful that he wasn't sick in a hospital bed. Nate also used his time home to eat us out of house and home and put all his weight back on. I'm telling you, we don't call him Super Nate for nothing!

Tuesday morning (yesterday) we were at the clinic bright and early for his count check. We expected him to make his counts...and he did. So, he got checked in and started round 5 late last night. So far, he is doing pretty well. He did throw up this morning at 5am, right before his next dose of anti-nausea medication was due. Chris and I made a plan to make sure Nate is getting some sort of anti-nausea medication every 3 hours with another medication to be used if he still throws up. We are just trying to stay on top of it. The more food he keeps down, the better off he is. So far, so good. He hasn't thrown up again and has been eating well all day.

We also now have a new plan for New York. We have a consultation appointment scheduled for November 30th and surgery December 5th. As we well know, things can always change but these dates will probably stick. This also gives Nate's body some good time to recover from this round of chemo before surgery. I will start making some travel plans tomorrow.

Unfortunately, the timing of all this, seriously puts our hope to not spend Christmas in the hospital in jeopardy. The one thing I know though, is that we have very little control over this. We will take control over what we can and give the rest to God. Fair warning...I don't want any pep talks if we have to spend Nate's birthday or Christmas in the hospital. I don't want to hear, "It's ok...you can celebrate another day" or "It's just one birthday/Christmas". I know all these things and if it comes down to it, you can be damn sure that I will make the best of it and make it as special as possible for my kids. But, starting sometime this month (when RSV season starts), Wes and Ellie will no longer be allowed at the hospital (because children are germ factories). So if Nate is in the hospital, our family will be separated. We will make the best of it, but we will not be together on Christmas Day...the first real Christmas that Nate "gets it". We will figure it out, because we have no choice, but if you try and give me a pep talk about how it's not that big of a deal, I am thinking in my head (on a good day), "Then why don't we trade. I will be at home with my healthy, happy family and you can sit in the hospital with your son who has cancer.". On a bad day, I might just scream this in your face and run away crying. None of us want that...so you've been warned.

When I took Nate to the grocery store in his Charlie Brown costume, three people thought that I had shaved his head for Halloween! This is why we must raise awareness for childhood cancer. The fact that someone (3 someones) would think that it was more likely that I would shave my 2 year old's head bald (and this is no buzz cut...he is B-A-L-D) for a Halloween costume than it is likely that he has CANCER, is totally ridiculous. These people did not automatically think cancer because childhood cancer doesn't come into their neighborhood...it doesn't dare enter their grocery store. Childhood cancer stays on the TV in those sad St. Jude commercials. It stays far away, in the hospital where it can't touch their family...except when it comes crashing into your family like a Mack truck. I felt a little bad "ruining" these people's day when I told them that "No, I did not shave my son's head...he has cancer". They got a scared look on their face, mumbled "I'm sorry", and walked away quickly...all 3 of them. I could have just let it slide, but I didn't. They need to know the truth. Childhood cancer does come into their grocery store. Hopefully they went home and thought about Nate for just a minute. Hugged their family a little tighter. Maybe they will donate some money this year to childhood cancer research. Maybe they will turn off the effing Kardashians and go volunteer at the Children's hospital. Maybe not...but I'm going to keep telling people and I know Nate and his beautiful bald head will make a difference to someone.