Peach Fuzz

I noticed that Alex's hair is starting to grow back in. Right now, it is soft peach fuzz on his perfect little head.

As we wait for Alex's numbers to rise so he can start the last phase of treatment, I have had some time to reflect on the last 8 months. It is amazing that only 8 months ago, our life turned into a living hell. Our world was turned upside down, and our hearts felt broken beyond repair. Eight months ago, we were sitting in a hospital room, reeling from a diagnosis that no parent should ever have to hear, and no child should ever have to endure.

Eight months later, we are recovering from the most intense phase of Chemo. A phase that wrecked us emotionally, and Alex physically.

While this next phase will be more routine, we must remain vigilant in our fight against this vile disease. We cannot become complaisant, as Alex starts to regain his "normal" physical appearance. We have another 18 months of treatment, with oral Chemo *every* single day, and Chemo through his PORT or in his spinal fluid once a month. We have been told that this phase, while not as intensive, is the *most* important phase in making sure that this cancer is gone for good.

Every week that we are delayed, feels like a reprieve for the cancer. I'm not a fan of those feelings. I know that these delays are built into the "road map" used to detail his treatment, but it doesn't make me feel any better. Tuesday, we go back to the clinic to hopefully start this new phase. I hope Alex's numbers are high enough to begin. This waiting is killing me...

Counts Too Low Again - 2nd Week

Argh - Alex's counts were actually DOWN to 200 this week, from 300 last week. They have to be 750 to start. So, Alex and cancer both get another week off - I'm not a happy camper...

For My Good Friend, Alex

My good friend, Erin wrote this letter to her friends and family. I was so touched by her words, I asked if I could put it here on my blog.

Thank you Erin!

*****

I remember the day I met Alex. My own son, Erik, was only 3 months old when we walked into our first Baby Gym class...there were Alex and his mom, Sara. Alex and Erik couldn't have been more different. I had such a serious baby, with pale skin, blue eyes, and the tiniest dusting of pale blond hair that stood straight on end. Alex, though a month younger, had a full head of thick brown hair, an olive complexion, and piercing hazel-brown eyes. He smiled all the time, and was so energetic. I think it's safe to say that, from the beginning, Alex has been the one in the forefront, leading my very cautious little boy to try things he would otherwise be too fearful to do.

Sara and I (though in the beginning I knew her only as “Alex's mommy” and I think she introduced me to her husband as “Erica” the first time we met) soon became great friends. We learned that we had so much in common, from our similar experiences in trying to start our families to views on politics, parenting, and religion. I had found a kindred spirit and a lifelong friend! And it was a bonus that our little boys got along so well.

As time passed, it became obvious that Alex was going to charge headfirst into everything he could. He was the first of his friends to sit, to crawl, to walk...and then RUN! It's like he couldn't wait to get going. I remember a trip to the park when my youngest son Lukas was a baby, and Alex and Erik had just turned 2. I was the mom relaxing in the grass while my boys contentedly dug in the sandbox...as I watched Sara climbing to the top of the “big kid” jungle gym to retrieve her tiny, protesting son! Alex has always just been so adventurous and full of life.

So, when Sara called me one evening last November to tell me they had spent the afternoon in the ER, I was sure it couldn't be anything too serious. She told me that Alex had what the doctors thought was a lingering case of croup...but because his breathing wasn't getting better after several steroid treatments, they had ordered an x-ray. His thymus was enlarged and pressing on his airway. Even so, I remember “talking her down from the ledge,” thinking of all the benign possibilities. Alex was going to be fine; after all, he was the healthiest, most energetic little boy I'd ever met.

The next day, when Sara called to say they were going to the children's hospital for some more tests, I was still sure it had to be something simple. Something from which he would quickly recover. A few hours later, Sara and I cried together on the phone when she told me the results of the initial tests. I was numb and just couldn't wrap my head around his eventual diagnosis over the next couple of days: Alex has Acute Lymphoblastic Lymphoma.

To me, Lymphoma was the disease that took my Grandma Vining's life. Lymphoma was NOT an illness I associated with a healthy, energetic, 3-year-old boy. My son's best friend. My best girlfriend's child. Just a few days earlier, our main concerns were issues with sibling rivalry and me complaining about my big, pregnant aches and pains. To say Alex's diagnosis shook me to my foundation is probably an understatement.

Almost eight months later, Alex is continuing his battle against this disease. His parents are incredibly strong people, who have maintained a semblance of normal family life for Alex and his little sister, Tessa-Lynn amid extended hospital stays and chemotherapy drugs that poison not only the cancer, but Alex's healthy cells as well. They make him feel sick. They make him feel tired. They have made him lose his hair. But they are working. The treatment phase will last 2 years, and when he has gone 5 years without any detectable cancer cells, he will be considered “cured.”

I'm happy to say that Alex's prognosis is good. Thanks to Alex's vigilant, loving parents, a team of wonderful doctors, and ongoing medical research, I look forward to celebrating more of Alex's birthdays, and watching our little boys grow up together.

When I was given the opportunity to walk on Alex's team for the upcoming Light the Night event, I was so happy to say yes! The Light the Night Walk is the Leukemia & Lymphoma Society's annual fundraising event. LLS is the world's largest voluntary health organization dedicated to finding cures for blood cancers. A full 75% of the Society's total expenses go directly to support research and patient services.

I have never done anything like this before, and I certainly don't expect all my friends and family to donate money to LLS. However, I felt compelled to explain to you all why I'm doing this; why it is so important to me. And if you happen to be looking for a good organization to donate to this year, I would love it if you would sponsor me and Alex's team in the upcoming walk.

If you'd like to make a tax-deductible donation of any amount (every little bit gets us closer to our goal), you can click “donate” on the widget on my Facebook Profile, or go directly to my fundraising page at: http://pages.lightthenight.org/or/PortlndL09/vininger (where you can also learn more about Light the Night and the great things that LLS is doing in the battle against blood cancers).

Thank you so much for taking the time to read this, and to allow me to introduce you to my good friend, Alex! To learn more about Alex and his ongoing battle against Lymphoma, please visit Sara's blog at: http://alexbattle.blogspot.com/

Counts Too Low to Start Maintenance

We had high hopes that Alex's ANC would be high enough to start the next phase of treatment. Unfortunately, his ANC was only 300 this week, so we wait another week and try again.

Home

We are home!

Tessa-Lynn and Alex were so excited to see each other - it was so sweet!

Shhhh...the children are sleeping...I don't think we'll be too far behind them.

Thanks to everyone who sent wishes/prayers/love/support our way these last few weeks. We hope to have a quiet, chemo-free week ahead.

There Is No Place Like Home

We get to go home today! Alex's ANC was up to 180! That is still really low, but on the rise, which is just what the doctor was looking for to send us home.

Now we get to wait on the hospital's slow machine to kick out Alex's discharge papers. I'm so excited!

Friendship

I had a wonderful visit with a great friend today. Erin took me out for coffee (well, it was the Starbucks on the first floor of the hospital - but it still counts!).

I was able to escape the hospital room for a few hours, and enjoy laughing with a friend. After we said good-bye, and I started walking back to the hospital room, I realized that I felt taller (hey - no short jokes!). The weight of Alex's condition was lessened - because it was shared with a friend.

I also recognized that this is not the first time I have felt this relief. Our friends and family have helped distribute the weight of our troubles throughout this whole ordeal. From the crushing load of the initial diagnosis, through the endurance race of cancer treatment, our friends and family have carried us when neither of us thought we could go on. I cannot adequately express how much this means to our family. When people say "what can I do?" The very fact that they ask, helps us more than they will ever know.

Alex is in good spirits, and still doesn't have a fever (whew!). However, he still doesn't have an ANC number, so we can't come home yet. I am so proud of Alex, and how well he is doing cooped up in this little hospital room. He's a real trouper - and my hero!

X-Ray Update

The X-Ray came back clean - no pneumonia - whew! There was a little clouding in one of his lungs, and a little rattle when the doctors listen, so they have him on Zithromax antibiotic just to cover all bases.

ANC Unchanged

Alex's ANC is still hovering between 0 and 100 - not enough movement for the doctors to release him yet. The good news is that according to his nurse, Alex didn't have a fever all night.

When we meet with the doctors today, we'll find out about the X-Ray, and what they want the ANC number to be before we can go home.

So, we are moving in the right direction - just very, very slowly...

X-Rays

It is now official - Alex has had more X-Rays in his life than Eric and I put together (not including Dental X-Rays).

He is such a champ! No 4 year old should be as well versed in medical procedures as Alex is.

The doctors thought they heard a little rattling in his lungs this morning, and wanted a X-Ray to rule out pneumonia.

Alex is in great spirits right now, playing trains with Eric.

I'll update when I know more...

Walking the Halls at Doerenbecher

It is so easy so sink into self-pity when your child has cancer. It is so easy to say "why us?". It is so easy to get tunnel vision and forget that your heartache is not the only pain in this world.

Sometimes when I start to feel the quicksand coaxing my spirit down into that dark place, I walk the halls of the hospital.

I am reminded that I can talk with my son, I can touch him, I can hold him, I can hear his "I love you's", and I can have hope that we will beat this disease. We get to leave this place in a few days, even if we do have to return regularly for the next 18 months.

As I watched a Life Flight Helicopter land on the roof of the hospital, I was struck with a deep feeling of gratitude that my son, daughter, husband, or other family member was not on that flight. While our battle is long, we have time to build up our endurance for the long haul ahead.

The suddenness of the diagnosis, while still stinging, has become more of a dull ache in my heart. I count the days we have had our wonderful son since cancer first tried to rob Alex of his life. Each of those days is a precious gift that I would not trade for the world.

Since his diagnosis, we have celebrated another birthday, I have watched him learn to write his name, I have seen his imagination hard at work, and witnessed him catching his first fish.

Perspective is hard when your child is facing cancer. Walking the halls, and witnessing the strength of the other patients and their parents reminds me that we do not suffer alone, and that heartache comes in many different forms. It also reminds me to hug my children, and tell them I love them as often as I can . I hope this post reminds you to hug those you love too.

Fever/ANC Update

Low-grade fever today (under 100) - but with no change in his ANC, we won't be coming home on Sunday. We hope that the fever is gone for good, and that we just have to wait for the ANC to go up.

Come on White Blood Cells - grow, Grow, GROW!!!

Fever Update

102.5

Ugh... doesn't look like we will be going home on Sunday...

Dear Tessa-Lynn

Hi Sweet Cheeks, I miss you.

I'm so sorry that we have been away from you as much as we have these last 8 months. For half of your sweet life, your big brother has had cancer. We are fighting so hard to get him healthy again. We want you to grow up with him in your life. In order to make that happen, we have a whole lot of doctors appointments we have to take him to. Sometimes, he needs to stay overnight in the hospital, and Mommy and Daddy may have to stay overnight with him. Your brother wants to be home with you and us. He misses playing with you when he is here at the hospital.

I'm so glad we have your Grandma Diana and Grandpa Bob close by to take care of you when we are taking care of your brother. They, along with all the rest of your huge family love you so much!

You are quite the amazing little girl, and I hate missing even one minute of your day. Your smile is infectious, and your strong personality and independent spirit are so much fun to witness.

We still have another 18 months before your brother's treatment is done. By that time, you will be twice as old as you are now - almost 3 years old.

I want the time to fly so fast, so we can be done with Alex's treatment, but I also want it to slow down so I can enjoy watching you evolve from an adorable toddler, into a wonderful little girl.

I want you to know, that even while our hearts are aching over your brothers battle with cancer, we are loving you dearly, and missing you deeply every time we are apart.

Loving you,

Mommy & Daddy

Fever Back Up & ANC Down

101.5 Fever

0 ANC

There is nothing else to say...

Stuck in a Hospital Room

I woke up this morning in a hospital room with my son. My husband and daughter woke up at home without us.

CANCER SUCKS.

Alex received a blood transfusion last night in order to keep enough blood pumping through his veins to continue this battle.

GO TO HELL CANCER.

Alex's fever is low (99.6), but still too high to start the clock for us to go home (48 hours fever-free, and counts on the rise)

WE WILL FIGHT YOU CANCER.

The doctor's have told us we will be here until at least Sunday, robbing us of any chance to have a nice summer weekend as a family.

WE WILL WIN THIS BATTLE, CANCER.

Alex started to cry when I told him that I would go home to be with Tessa-Lynn tonight, and only Daddy would be here to sleep with him. He wants us both to be here with him.

HE IS STRONGER THAN YOU, CANCER.

Because of Alex's counts, fever, and cough, we are stuck in a room the size of a one car garage. There are only so many movies, books, and games to keep an active, smart 4 year old engaged. Boredom should begin in 5, 4, 3, 2, 1...there it is!

ALEX WILL SURVIVE, AND OUR FAMILY WILL BE STRONGER IN SPITE OF YOU, CANCER.

I haven't heard yet what his counts are this morning - I'll post again when I know more.

CANCER SUCKS.

Murphy's Law

I knew I shouldn't have written that last post. Whether it was Murphy's Law, superstition, bad luck, or coincidence, we are here at the Emergency Department, getting Alex admitted for a fever with neutropenia (ANC=100) tonight.

So, while cancer didn't invade our home life yesterday, it was waiting for the right moment to pounce, and rear it's ugly head.

The frustrating part is that Alex is in a relatively good mood, and doesn't seem as "sick" as he did last week.

It's 9:45pm, and the doctors are now trying to coordinate with the Oncologists to see what bed to put him in tonight.

Tomorrow is scheduled for Alex's last Chemo in this phase before he starts Maintenance - I think that they will continue with the Chemo if his fever isn't too bad - but I can't say for sure.

I would think that I would get used to these admissions, but I don't - riding in a wheelchair with my son in my arms to the place where this all began is the last thing I want to do. Alex isn't too happy about it either...

A Normal Day

Today was good. The household was acting like a normal home with a 4 year old boy and 17 month old girl. That means: "Alex, stop tackling your sister...Alex, that's a little rough...Alex, give that toy back...Tessa-Lynn, don't hit your brother...Mommmm, look what your daughter did (my new personal favorite)..., and LOOK, LOOK (said at a high pitched 17 month old squeal)".

It is also filled with "Alex, that was very sweet...Tessa, kisses for Mommy?...Nice hugs...Thank You...Please...Your Welcome!"

The really, really nice part? Cancer didn't invade our home today. No medicine, no pokes, no aches, no nausea, no intestinal issues, no exhaustion, no fevers, no crying, no worries.

A really good day...

The Last PEG Shots!!!

Today, Alex just received his last two PEG Shots - EVER! There were some tears as the nurses readied the needles, and plunged them into his thighs. Afterwards, Alex bounced right back and went to the playroom to play while we wait the hour to see if he has an allergic reaction to the shots.

That's where he is now. Playing with other kids who are afflicted with a cancer or blood disorder. It's a pretty small club - we have seen many of these faces before. There is a certain kinship they all share, a bravery that comes from within, and a strength I will never be able to master.

When the nurses checked his counts today, his ANC was 300...yes 300... it was 5,100 on Tuesday afternoon. His counts have plummeted as expected - which means the chemo is doing it's job. His counts were just high enough to not need a transfusion this week, so the likelihood of a transfusion next week is pretty high.

I am so very proud of my boy today, and every day. We are only one treatment away from the Maintenance stage - a huge milestone in his cancer treatment!

No Fever!

Alex woke up without a fever today! He is playing "Star Wars" with his sister and his Gampa Pat and Gammma Carol.

It's a really good day!