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Monday, January 31, 2011

Music to My Ears

On Saturday we went to the library here in the hospital. This hospital is so large it is like it's own island...one could literally live here and never have to leave. There is a library, book store, gift shop, cafeterias, mailboxes, and more. It is so giant that you have to walk miles each day to get where you are going. I don't see any overweight workers here, probably due to all the walking that is involved in working at a place as large as this.

I can only say that I am thrilled that there is a library here. Jacob looks forward every day to being pushed in the wheelchair to the library. I get a workout pushing the wheelchair and pulling the iv pole alongside. He picks out a pile of books and some movies to bring back to our room everyday. If there wasn't a library how much duller life would be here. As a matter of fact, I rent this laptop out from the library as well, otherwise there wouldn't be a blog life while I was here either.

On Saturday we strolled to the library and Jacob plopped down on a chair and started to browse through books. I rested in a chair, closing my eyes and trying to doze. That's when I heard it. Giggling. Hysterical giggling. I watched Jacob to see what he was doing. He was hunched over a book on the floor, giggling at what he was seeing. I asked him what was so funny and he held up the book "Curious George Goes to the Hospital". Every time he started to tell me what was so funny he burst into a fit of giggles. He pointed to a picture on a page and continued to laugh.

He was laughing at a picture of a nurse giving Curious George a shot and the look of pure terror on George's face. I have to admit, the drawing was hilarious and we both giggled at it. This is an older book, with the older illustrations of Curious George, not the "new and improved George". I think that had something to do with it being even funnier.

We checked it out and brought it back to the room. We looked through the book several times. Only later, when I was getting ready to read it to him, did I realize that the book was in Spanish. Sunday we went back and got the English version of it.

Despite all Jacob has been through, he is relatively still that happy little boy. How my soul soared to be reminded of it though, it was music to my ears.

Sunday, January 30, 2011

Suggestion Box

Dear Hospital Suggestion Box,

While I have the utmost respect for your hospital for treating my little boy, some of your practices are a bit annoying. Moving us from our room in the middle of the night to make room for a new patient? That tops the list. We were tired, comfortable, and already settled in our room. Why didn't you just put your new patient in the room that you moved us into last night? Now we stay in a double room, with a crib, and I pray that we do not get a roommate before we leave. As much as I love babies, I do not want to share a room with one. I've heard them crying all night through the thick doors of our room, I don't want one in our room.

I know that this is a teaching hospital. I get that. But having a new resident doctor come into our room every single day, introduce themselves, and never be seen again is annoying. I don't remember their names. They don't check out my child any better than the nurses do. As a matter of fact, they do the exact same thing that the nurses just did 15 minutes ago. Then leave never to be seen again. It's a bit odd, really. We could do without that.


The Grouchy Mother Who Was Woken Up One Too Many Times Last Night

Friday, January 28, 2011

A Bedtime Story

Well, not really a story so much as a "quick note before bed".

I'm all decked out in my pajamas and waiting for Jacob to finish eating so that we can brush his teeth and give him final medications before going to bed. It may be awhile before he finishes his pretzels though. This boy has been eating like it's going out of style today. I'm not sure what caused it but I'm happy, hoping that he will gain a pound or two. So far today he has eaten 3 protein bars, several handfuls of pretzels, a handful of almonds, half a hamburger, 2 1/2 small bags of chips, half a grilled cheese sandwich, cantaloupe pieces, a cookie, twizzlers, yogurt, and I know I'm forgetting something. This is amazing compared to how little he has been eating lately. I hope this continues.

The three chemo medications are finished for tonight. So far so good. The next three days will involve just two of these medications. If all goes well we will be going home early Monday afternoon and won't have to return again until February 18th, which marks another 4 day stay (and the first scans after treatment). I'm glad that 4 hours into this treatment he seems to be doing well.

The Child Life activity this evening was game night in the playroom. It was just Jacob and one other girl, along with the two activity planners but Jacob had a blast playing Candyland with them and winning! He also loved the new to us game of Headbands. He liked it so much that once game night was over we continued to play, just the two of us.

Now I'm off to deck the uncomfortable couch with sheets, a blanket, and pillows and hopefully get some sleep soon. I'm very thankful that we have our own private room this time. Goodnight.

Thursday, January 27, 2011

Hi Ho, Hi Ho...Off to Chemo We Go

Tomorrow Jacob and I head back to the hospital for a 4 day in-patient chemo round. This time around he will be getting Cyclophosphamide, Etoposide, and Carboplatin. He hasn't had these three drugs yet so I pray that his body handles them well. The Carboplatin can hit the cell counts pretty hard and it takes much longer for them to rebound afterwards, compared with his other chemo drugs.

Today finds me trying to get the house ready for a four day leave. Catching up on laundry, picking up, and trying to get a bit organized. I still need to pack our bags and am just waiting for that laundry to get done to do so. Ben will be home with Becca and Joe, who do pretty well with their mommy and brother gone, even though I have never been away from them overnight before Jacob was diagnosed with cancer.

I am prepared this time for food. I went to the grocery store last night and stocked up on microwaveable soup bowls, Hormel Complete meals, and breakfast bars. The food in the cafeteria is not only crazy expensive but also greasy and gross. Not that the Hormel Completes are a whole lot better, but at least the price is! I can round out my meals with a salad from the cafe.

This time around Jacob will not have to be stuck in bed healing from a major incision to his abdomen. If he is feeling okay we can load him into a wheelchair and push his IV pole alongside and tour the hospital. Jacob loves looking around in the gift shop and loves to stop at the piano in the lobby that plays music by itself (he loves to watch the keys move and tells me it is a ghost playing). There is a playroom on the Child's ward that he likes to play in and often times there are activities for the kids to do together. He is looking forward to going to the hospital library and checking out books and movies. If possible, I will be checking out a laptop from the library and will update from the hospital.

Tuesday, January 25, 2011

Tuesday's Topic

I'm sick of cancer. I was sick of cancer before Jacob even got cancer. In the past four years I have had a Grandmother die of cancer (just three months ago), and a father, aunt, and uncle diagnosed with cancer (all are in remission now, thankfully).

My blog has focused on cancer the past month, and will continue to do so for awhile, whether I want it to or not. That's just the way cancer is. But I would like a break every now and then. Since I don't have the energy to think of other topics to write about at the moment, I'm asking you dear readers to make this blog interesting for me once a week.

Tuesdays will be "Tuesday's Topic". I will post a question and would love you all to share your opinions in the comment section. Debate away, if you so choose...anything goes as long as you are respectful of each other. If a topic holds a real interest to me I will even join in or write a post about my opinion later. Basically, Tuesday posts will be a distraction for me. Won't you join in?

Today's Topic: With shootings becoming more and more common, what is your opinion on stricter gun laws? What are your views on gun ownership?

Celebrate Life

This week marks the 38th anniversary of Roe vs. Wade. I've always been very pro-life, but feel even more so now. While I fight for my little boys life, I can't imagine how it can be legal for other mothers to take the life of their child. I pray that someday abortion will be illegal and that we will respect, honor, and celebrate all life.

Monday, January 24, 2011

This and That

Alternately titled: "In Which I Don't Mention the "C" Word Once!"

We awoke to more snow flurries this morning. January has so far proven to be a cold and snowy month. As a matter of fact, this weekend we had an overnight low of 23 degrees below zero. That was the actual air temperature, not the windchill! Brr!

The kids have been busy watching their two "pets" recently. Jacob received a frog habitat as a gift and instead of waiting for the tadpoles to be ordered and sent by mail (since they don't ship out until the weather warms) we decided to go to the pet store and pick up two Fire Belly Toads. Their food, live crickets, fascinate the kids almost as much as the frogs themselves do. I have the fun job of feeding the frogs as the kids do not want to get anywhere near the crickets!

I had to call the bank this morning and cancel our debit cards and get new ones reissued as I misplaced mine over a week ago and can not find it anywhere! Actually, Joe is the one who misplaced it and for the life of me, I can't figure out where he put it. Knowing Murphy's Law, and how it works in our life, I know that I will find it the very day that our new cards arrive. This has happened several times...like when we lost the Curious George DVD from the library and looked high and low for it. After buying a new one to replace it, we found the library copy in a "Good Times" DVD case here at home...the one case I didn't check in after looking through all the other DVD cases.

Our dog, Weezy, gets dropped off at the vet's office this evening so that she can be spayed tomorrow. Our van gets picked up tomorrow for repairs, for the brakes are rubbing and oil seems to be leaking from somewhere.

My nervous energy is still working to my advantage, helping me get a lot done around here. I've been filling up bags for Goodwill, boxing up things for my mom's spring garage sale, and throwing a lot away. Guess I'm getting my spring cleaning started a little early.

What have you been up to lately?

Sunday, January 23, 2011

I'm a Maniac!

This morning I awoke to a lot of nervous energy. I've been having a lot of days like that and typically let it take hold but today I decided to put that energy to work and used it to my advantage. Scrubbing floors, purging closets and boxes, and keeping my hands and mind busy proved a way to keep that energy at bay.

The truth is, as the mother of a cancer patient, cancer is never far from my mind. Even when we have a few days together at home, it isn't back to normal. I'm not thinking about what to cook or how to save money. I'm not looking forward to any play dates or normal activities. My life as it was is no more. Now there are medications to keep straight. Worrying about if my son is coming down with a fever or trying to decipher if his crying is because he is tired, feeling sick, or just sick and tired of it all. It's a whole new ballgame.

But today, during some moments, I almost felt normal. It felt good to do something as normal as scrub the kitchen floor or to fill up two garbage bags of stuff for Goodwill. It's good to feel normal, if just for a moment.

Thursday, January 20, 2011

Missing Persons

I'm sure you have been noticing the lack of photos on my blog as of late. When my computer crashed in December I lost all my photos (I am kicking myself...and still hoping that my brother can find a way to recover them from the hard drive).

My aunt gave me an awesome Apple computer a few weeks ago so I'm back to owning my own computer. The computer does not recognize my camera though, so until my brother can come over and find the correct software for it I am unable to download my pictures from my camera to the computer.

I'm missing my posts with photos probably more than you are. I just had to steal one of my favorite photos of Jacob from an old blog post and re- post it.

He may be missing his hair now (yes, we finally went ahead and sheared it short) but he still has this megawatt smile!

Wednesday, January 19, 2011

One Thing Down...

Jacob finished his radiation treatments yesterday! 11 days of driving back and forth to the hospital, 11 days of being zapped of your energy and feeling nauseated from the treatment to his abdomen. He is glad to be done with that step of his journey.

When we arrived at our last appointment the receptionist greeted him with a balloon and an army helmet filled with army toys (Jacob loves anything Army!). I was greeted with a bouquet of roses. These precious gifts had been dropped off at the hospital from my mom's long time friend, who we used to live down the street from and who's daughter I used to be best friends with. My mom's friend had gone through radiation a few years ago and was presented with flowers on the last day of treatment and it meant the world to her, so she wanted to do the same for us. It was wonderful - a way to mark this milestone of one thing being done and over with. Jacob's face lit up and he dug right into his helmet of treasures!

After radiation, he had his third chemo session. It was all out patient but everything yesterday took so long. We were in the office for two hours, when the actual chemo took just 1 minute. It was crazy. Then we were told to go to the pharmacy to pick up some more G-CSF shots as his blood counts were lower so we should re-start them. It took the pharmacy 2 hours to fill that prescription. We didn't get out of there until 5pm! When I arrive home I gave him the shot before listening to my phone messages: which said the counts are a bit higher than they thought and not to restart the shots. Oops. I'm awaiting a call back this morning as the counts don't match up so I need to ask for certain whether or not I need to continue the shots (the $250 a vial shots). There is always so much waiting and checking and waiting some more at these appointments.

Jacob's next chemo round will be on the 28th of the month. This involves 3 new drugs which he hasn't had and will be a 4 day in-patient stay. I dread these hospital stays, but am glad that we have 10 days at home to be normal. He needs a few blood checks in between now and then but that can be done here at our local lab and faxed in.

Joe was sick all day yesterday while we were gone. He has a fever and is not feeling like himself. I can't tell if it is the start to something like the flu, or just one of those 24 hour illnesses that small children sometimes get and bounce back from. He was quite warm last night and had to have some Tylenol. He whimpered and moaned in his sleep. He does seem better this morning, just feeling slightly warm and tired. Jacob can not get this. Any fever of 101 degrees means he will be admitted to the hospital for three days. His counts are lower right now so his body would have to fight extra hard to get rid of this fever...which would take a toll on him. I am praying that he can avoid this bug.

Sunday, January 16, 2011

"My Hair is Falling Out"

That is what Jacob told me today, in a whisper, as we lay in bed for a mid-afternoon rest. I turned towards him and saw his fist full of strands of hair.

"My hair is falling out."
It was said matter of fact, with a bit of fascination really. I had prepared him for this day. He has seen other bald children at the hospital. The first time he saw a little girl his age with no hair I brought the topic up afterwards for discussion by saying "That little girl looked kind of funny without hair, huh?" He shook his head and said "She didn't look funny." I explained how the medicine he will be getting will make his hair fall out but that it would grow back in once the medicine stopped.

And yet, while we both know that his hair is starting to fall out, we both are putting off cutting his hair short in preparation for it. I almost got the nerve up yesterday after cutting Joe's hair...but just couldn't bring myself to do it. Because I know it will be quite some time before I see hair on his head again. I asked him today after he noticed his hair falling out if he would like me to cut his hair "Maybe tomorrow" he answered.

We are both holding onto his hair for as long as we can. As long as he has hair he isn't recognized as "the kid with cancer". People glance at him in his wheelchair in the halls of the hospital but they don't know why he is in there. Soon everyone will know, just by looking at him. I think even this 5 year old boy senses this, as he puts off cutting his hair for another day.

Friday, January 14, 2011

So That's What It's Like...

Have you ever seen the headlines on magazines at the newsstands that declare "She Does It All!" about a mommy celebrity, such as Angelina Jolie or another one of the 'super mommies'? Whenever I see an article like that I just roll my eyes - after all, it's easier to be a mommy when you have someone doing all your cooking and cleaning, as well as much of your childcare for you. How can you 'do it all' when you aren't doing it all?

I was right about it being easier. While this is the most stressful time in my life, it has been made easier by the generous people filling our freezer and fridge with food. Family, neighbors, and strangers have stopped by with casseroles and soup. Ben's workplace has supplied us with enough food to feed an army. Besides heating up food, I have not had to cook in 4 weeks. This has been such an amazing blessing.

And the cleaning. Every day that my mom has watched the other two kids while Jacob and I have run to appointments and treatments, I have come home to a clean house. Not just a clean house, but an organized one. Today (as well as last Friday) my mom and a friend were busy little bees in the house...laundry was done, dishes were washed, the playroom was cleaned, the carpets were vacuumed, sheets washed, and so on. I can't tell you how relaxing it is to come home from a long day of driving and treatments to a clean and inviting place.

Because to be quite honest, if someone else wasn't doing these things for us right now they wouldn't be getting done.

I have gone to the grocery store twice in the past month - both times just to load up on things that I know that Jacob will eat as he hasn't been eating much at all. Ice cream, toaster strudels, and pizza rolls may not be very nutritious, but they are some of the only things he is hungry for right now and they at least get calories into his little body. Radiation can really change the taste of food, or even make it tasteless. Jacob seems to be hungry but once he puts food in his mouth he spits it back out and declares it "yucky". So I feed him whatever he wants right now. Those foods, along with Carnation Breakfast Essentials are keeping this boy going. I was able to rush through the grocery store and grab what he wanted without much thought. Had I needed to plan a menu, write out a list, and actually gone grocery shopping in this past month I would have failed. It is something that requires too much thought and creativity and I am not in "that place" right now. Bless my husband, but he couldn't cook to save his life and his grocery store attempts end in one bag of junk food that costs $50. Not having to think about food, but still getting fed, is awesome. One of the biggest chores for a mother is feeding the troops so having this load taken off of me at the moment is incredible.

Cleaning is the last thing on my mind. Driving close to 4 hours a day and spending an hour (on a good day) or more at appointments leaves me exhausted. The few days that we have had at home have not found me scrubbing floors or deep cleaning. Again, my husband is a great guy...but he doesn't notice the things like crayons all over the floor, or the piles of laundry needing to be put away, or the bathtub toys thrown all over the bathroom floor. These little messes pile up when you have two children and pets at home and mommy is away. Instead of cleaning I rather wanted to cuddle with my two children that I was away from for ten days. I wanted to make sure I had all of Jacob's medications administered on time. I wanted to sit by Jacob on the couch and watch his favorite cartoons. Cleaning meant nothing to me. And yet it means everything. A clean home is relaxing, inviting, comforting. So while the last thing on my mind was cleaning, one of the things I needed was a clean home.

It's true, it's easier to be a good mommy when you don't have to do the cooking or cleaning. Thanks to everyone for helping me be that good mommy. Now I know how those super mommies do it all - someone does it for them!

Wednesday, January 12, 2011

Wacky Wednesday

Yesterday Jacob had his second round of chemo. It was just one drug so we were able to be out-patient. This drug does not cause nausea so no problems there...though it can mess with the nerves so there is a lot that we need to watch out for. His white blood counts were way down but this is to be expected one week after receiving chemo...they should start to go up in a few days.

Today we head to radiation; it will be the last one of the lungs. The next three radiation appointments will be just of his abdomen. He has been doing so well on the radiation table and holding as still as possible for a 5 year old boy. I can't tell him enough how proud I am.

I better go get us ready for our appointment. Will write more later.

Monday, January 10, 2011

Manic Monday

It was wonderful to have a rest over the weekend. Jacob got some much needed rest and some normal playtime with his brother and sister. I think it left us all a bit more refreshed and ready for this week.

Jacob had radiation today, which puts us a little over the half way mark! Just two treatments left to the lungs and 5 left of the abdomen. It's good to hear the number getting smaller and smaller. He has been a champ and the anti-nausea medication is still working to keep him feeling good after treatments, though today he has had some tummy pain. It could be something totally unrelated, which I hope will go away and not return.

Tomorrow Jacob will be having radiation and chemo. It is just one chemo drug tomorrow, which takes less than 5 minutes to administer, so we will be out-patient. Lots of blood work will be needed beforehand though, so it will still be a busy day. Ben is taking tomorrow off so that he can be home with the other two and so that my parents can get a much needed break from childcare. Please pray for safe travels tomorrow (it's a 1 hour 45 minute drive to the hospital) as we are expecting snow then.

My emotions are still like a roller coaster...I have my high moments and my low moments. Sometimes I don't even know what I'm feeling. I know that we will enter a new normal soon but right now my life seems to be in limbo at times...mourning the loss of what was and hesitant to enter the "new life" of cancer. Some moments I'm almost there and okay with it and others I bounce back to wishing it away. I'll get there someday.

Friday, January 7, 2011

Welcome to Holland

In a folder full of cancer information that was handed to me at the hospital was this paper titled "Welcome to Holland" by Emily Perl Kingsley. I've already accepted that my journey of life has taken a detour. It's nice to have a reminder to enjoy the scenery regardless.

The other day in the hospital I witnessed a mother pushing her small, bald child in a wheelchair while she chatted and laughed with another woman. I thought to myself "How can she be happy?" I sat there in a hospital room, day after day, watching my son go through pain, pokes, prods, and an overwhelming sense of despair set into me. I literally felt like our life stopped.

Life did not stop. Life just changed. Our life will never be the same...and this is not a life that I would have chosen, but it is what we have been dealt. It's time to find our new normal and get back to living.

Welcome to Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thursday, January 6, 2011

Perfect Strangers

Jacob had his 4th radiation treatment today - which means he is half way through the treatments for his lungs and just 7 left for his abdomen. He gets a bit fussy when they are positioning him on the table and does not want to lie still. I think the more we tell him to lie still the more he feels as though he has to move. They don't like to sedate him as they know he can lie still and it is only about a minute or two once they get him situated. Always, with a bribe or two, we are able to get him to be still enough. He is such a sweet boy, but getting tired of it all. The nurses are great but I'll be glad once the radiation is over so that we have one less thing to deal with.

He got sick after radiation yesterday. He was sick on Monday after it as well but we didn't connect the two. Today I gave him some anti-nausea medication before the treatment and no sickness, so I hope it continues to work like that. He is tired now, but it hasn't even been 3 weeks since his invasive surgery and he is already on chemo and radiation - it's totally expected.

Running back and forth is exhausting. We are about a hour and 45 minutes from the hospital. So we have to drive a total of almost 4 hours just to spend 15 minutes in radiation. I pick up my two hyper children from my parent's house and arrive home with them and my tired 5 year old. I could literally crash on the couch and sleep for days but there is always something needing to be done. I can' t thank my mom enough for cleaning the house two days in a row so that I arrive home to a relaxing place.

And then there are the "warm hugs" that I get upon arriving home - through e-mail and the mailbox. Friends, family, neighbors, co-workers and strangers are sending notes, gifts, and money and they all mean so much to me. We have been blowing through the gas cards people have given us, and have been so thankful to have them. The money is flowing right now too - food for trips, food for the hospital, parking costs, and endless other things. It's crazy.

And the food. People have been so helpful with food. Neighbors, friends, family, and co-workers have been so generous with feeding us. I have not had to think about a meal since this whole ordeal has happened, and once again, I couldn't be more thankful. Food is one of the last things on my mind right now. Not having to grocery shop, think of meals, or cook has been a blessing. Taking this small thing off my overflowing plate of things to do is a tremendous help.

So to everyone who has offered a prayer or kind word, sent an e-mail or card, wrapped a gift or tucked a little something into an envelope, or brought a meal to our 5 hungry mouths...thank you so much. Your support is helping these battle grounds become a little less steep.

Tuesday, January 4, 2011

Cancer Sucks

My brain is mush tonight. We just arrived home after having been gone since yesterday morning. We decided on the UH-1 study for Jacob's treatment, which should hit this cancer fast and hard (with extra radiation and higher doses of chemo and one added chemo drug) but doesn't seem so experimental.

Jacob had his first radiation treatment yesterday and his second today, which means he has just 6 treatments left for the lungs and 9 left for the abdomen. He had his first dose of chemo last night and we stayed in the hospital overnight to keep him hydrated enough, since many of these drugs can do lots of damage without the right hydration. Next week and the week after we won't have to stay overnight for the chemo but in week 4 we will need to stay 4 days. One chemo treatment down, 29 weeks to go.

I learned a lot today. A lot about blood counts and infections. How to give my son a shot (he will be needing a daily shot, which helps improve his blood counts...and I'm the one to do it), and loaded up at the Pharmacy. I couldn't believe it when I went to get his medications and they brought what looked like a grocery bag to the counter...filled with what he will be taking. The shot alone costs $250 for just two days, and he will be needing this almost daily for a year. Luckily, insurance will be covering much of these expenses. There is also several good hospital programs so it was a relief to have a chat with the social worker today and find out several options that will be of help to us.

Jacob has done so well through everything. No throwing up after chemo, so I hope it will stay that way. He was a bit more whiny today but it has to be from the fact that they made him get up every two hours last night to monitor his urine (not fun!). You know what else isn't fun? Watching my little boy go through so much and still try to put on a brave face. Hearing him utter "I have cancer?!" in disbelief when he realized what was going on, because the only experience he has with cancer is his great grandma who passed away just two months ago (it was heartbreaking having to explain to him that he does indeed have this but that this situation is totally different). Being in a double room (I didn't even know they had those anymore!) and having a roommate. Or trying to sleep in a recliner for several hours before giving up and crawling into bed with a 5 year old who is hooked up to different iv lines. Or only eating three pieces of bacon and a chocolate chip cookie that I scrounged from Jacob's meal because it was just too busy with meetings and appointments and caring for a little boy to even find time to run to the cafeteria. I sure scarfed that McDonald's Value Meal down on the way home this evening! You know the motto "Cancer Sucks"...it's completely true.

It's good to be home. We will be heading back three more times this week for radiation and meeting with the oncologist nurses again, but shouldn't have to be inpatient again for a few weeks (knock on wood). There's no place like home.

Sunday, January 2, 2011

Nothing Much

There isn't much to report here as we are in limbo, waiting until tomorrow to start treatments. We are still researching the clinical trials and leaning towards one which is much like the standard treatment, but may give him a boost that he desperately needs. I don't like to talk statistics, because Jacob is not a statistic, but the Wilm's unfavorable histology tumor at stage 4 does not have good statistics. So using a trial that may boost the treatment sucess could be a very good thing. Please continue to pray for our direction in this matter. Tomorrow we must decide the final decision so we have lots of questions to ask the doctors.

Jacob is still thriving being at home. Unless you were to notice all the incisions on his body, or the lump on his chest that is the metal port, or his paleness...you wouldn't even realize that this boy went through surgery just two weeks ago. He isn't eating as much as I'd like so I'm giving him nutrional shakes between meals and feeding him all the foods that I know he likes. I worry about his small little body withstanding all this treatment. He is a fighter though.

I'm amazed with all the help and support that we have been getting from friends, family, and even strangers. Thank you all.


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