Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.

Tuesday, October 30, 2007

Things Are Not Getting Better

Now mommy, daddy, Rebekah and Sarah are all not feeling well. Cold medicine is definately our friend right now.

Today mommy went to say "goodbye" to her aunt. After immediate family said "goodbye" she was taken off the ventilator and passed away from Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease." She has been ill for several years. This has been particularly difficult as mommy's father also died of the same disease back in 1999. Other relatives including mommy's grandfather and great grandfather. There is a strain of ALS that is called familial ALS that appears to have genetic links and this obviously worries us.

Not exactly what we needed right now - as if anytime would be okay or as if anyone ever "needs" this. But it is really rough on mommy and we could use your thoughts and prayers.


Monday, October 29, 2007

Sick Little Girls

Saturday started the downhill spiral... Rebekah woke up not feeling well with a mild fever, so she got some tylenol. Over the weekend, she has had temperatures around 101.5 and with tylenol or motrin it will drop to 99.5 or 100 and then it will rise back up before the medication wears off. Plus, her nose is bothering her. She is sneezing and that is causing lovely blood/snot mixture. Several times, it has turned into bloody nose and once it was draining down the back of her throat and she was coughing up blood. Not a pretty sight. Her nose is pretty well crusted with blood/snot and tender to the touch. And the temperatures continue... She stayed home today and will stay home tomorrow and we'll have to see how the rest of the week turns out. I took her to the doctor today, after another bloody nose and continuing high temperatures and one spot on her face that looked questionable and just plain not feeling well. We started her on antibiotics tonight, so hopefully she will start to feel better soon. Hopefully, her nose will stop bothering her and she'll keep her fingers out of it so it can heal. If she doesn't start improving, or we start to get concerned we will take her in to have some blood counts done. One thing we always worry about with bleeding that doesn't want to stop is platelet count. However, with low platelets there are usually some other problems like bruising - since we aren't seeing the other problems, we're not as concerned but still keeping an eye on it. One day at a time...

Saturday afternoon, Sarah started puking. Never a fun adventure. She wouldn't keep anything down. She was hungry, but even bland stuff wouldn't stay down... And, her temperature was on the rise and hanging at 101.5 without medication and only dropping to 99.5 with medicine. The puking continued overnight, but finally halted by the morning. The first puke after she went to bed, she nailed all the blankets, jammies, sheets, pillow case - everything. The next one, she sat up and grabbed the yellow bin herself and didn't soil any of the linens or her jammies - wow! A little cleaning of the face and some Mommy loves and she was ready to go back to sleep. We cleaned the yellow bin and gave it back (much to her dismay). Thankfully, the puking hasn't come back and she is eating, athough not as much as normal. I thought she was doing better, but just as I was getting her ready for bed she spiked a fever again at 100.9. Ugh! So, I guess Sarah probably won't be going to school tomorrow either.

As if that isn't enough, Daddy is getting over a sore throat and cold and Mommy is coming down with a severe sore throat. That makes it difficult to care for sick kiddos - not that it is every any fun.

Daddy bought some new boots yesterday (from a place that is going out of business, so they had some really good prices). The girls had to try on Daddy's boots - so here are the girls (in their overalls and daddy's boots).

Rebekah has been drinking a lot of chocolate milk (milk with carnation instant breakfast plus extra protein powder so she gets some full nutrition and some dairy). I make it up in a Magic Bullet which has a cup that you use to do the mixing. Well usually, I measure pretty well and it fits in her sippy cup, but sometimes there is a little extra in the cup, so I let her drink it from there like a "big girl". Here is the big girl with a chocolate milk ring - big around her mouth and over her eyes.

We sent some treats to school with Rebekah to encourage the potty training a little more and it seems to be working. There are some days when she stays dry all day at school.

In the last week, Sarah has seemed to make progress with the potty training as well. In the last few days, she has told me several times that she needed to sit on the potty and go poopy and actually done it. Today, she kept her pullup dry all day (not to mention it was dry all night last night - with one bathroom break at 6 am) and she had two poopies in the potty. So today, she earned her first "dora socks or dora underwear". She chose a nice pair of dora underwear with dora holding balloons. She might even get to wear them under her pullup tomorrow. But I told her she has to keep them dry. What a big day for Sarah!


Friday, October 26, 2007

Another loss and more breaking hearts

Once again, our lives are put into perspective. Josh's mom has talked about a young lady (12 years old) at her church who was diagnosed with cancer this past May with an inoperable brain tumor. I have watched her site periodically and been praying for her. Her name is Labri Dirske.

Today, she lost her battle. She is now in heaven and cancer free, but her family is mourning. Please keep her family in your prayers. And give your kids an extra hug tonight and let them know how much you love them and appreciate them. Check out Labri's page and sign her guestbook to let her family know you are thinking of them and praying for them.

The beautiful white rose that has touched so many of us in so many ways is by and used with permission from Australian photographer Lisa Hocking. Please see her blog and thank her for its use.



Sunday, October 21, 2007

Not so good news...

We are feeling a bit down right now. Rebekah went to the eye doctor for an intensive exam of her left eye (the one that suffered the worst of the radiation) on Friday. We had been told that she would definately have cataracts in that eye and more likely would be blind in that eye. Until now her vision in that eye had roughly been 20/40 and we thought it pretty miraculous that we had avoided the "guaranteed" problems. Until now. She is deteriorating pretty bad in both vision and clarity. She did not do as well on the vision testing and her eye is pretty much clouding over. We are just not sure where this well end.


Thursday, October 11, 2007

Out Of The Mouths Of Babes

You have just got to love those great "kiddo-isms" that our kiddos come up with. Last night mommy was reading the girls night-night stories. They happened to be reading a book about what Dora wants to be when she grows up. At the end mommy asked them what they wanted to be when they grew up and they both said "a doctor." Then mommy asked them what mommy should be when she grew up and again they both said "a doctor." Then mommy asked them what daddy should be when he grows up and immediately Sarah shouts out "Daddy no grow up."

Both girls got more shots today as part of our attempts to get them up to date with vaccines. Other than that things are going pretty well right now and we are rejoicing.

Please keep all the kiddos, especially Kiersa and her family, and now Nicholas and his family in your prayers.


Tuesday, October 09, 2007

What would (or will) you do?

This came from Rebekah’s Aunt TT in an email today. Apparently it has been making the e-mail rounds so some of you might have seen it. We had not and thought it good to put up here as this very well could be Rebekah. Please read it carefully, all the way to the end (even when you think you get the point don't start skimming:

What would you do? Would you have made (or will you make) the same choice?

At a fundraising dinner for a school that serves learning-disabled children,the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question: "When not interfered with by outside influences, everything nature does is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?"The audience was stilled by the query.

The father continued. "I believe, that when a child like Shay, physically and mentally handicapped comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child."

Then he told the following story: Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked, "Do you think they'll let me play?" Shay's father knew that most of the boys would not want someone like Shay on their team, but the father also understood that if his son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.

Shay's father approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, "We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in to bat in the ninth inning."Shay struggled over to the team's bench and, with a broad smile, put on a team shirt. His Father watched with a small tear in his eye and warmth in his heart. The boys saw the father's joy at his son being accepted.

In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as his father waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.At this juncture, do they let Shay bat and give away their chance to win the game?

Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball. However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least make contact. The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher. The game would now be over.

The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.Instead, the pitcher threw the ball right over the first baseman's head, out of reach of all team mates. Everyone from the stands and both teams started yelling, "Shay, run to first! Run to first!" Never in his life had Shay ever run that far, but he made it to first base. He scampered down the baseline, wide-eyed and startled.

Everyone yelled, "Run to second, run to second!" Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball ... the smallest guy on their team who now had his first chance to be the hero for his team. He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions so he, too, intentionally threw the ball high and far over the third-baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home.All were screaming, "Shay, Shay, Shay, all the Way Shay"Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base, and shouted, "Run to third! Shay, run to third!" As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, "Shay, run home! Run home!" Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team.

"That day", said the father softly with tears now rolling down his face, "the boys from both teams helped bring a piece of true love and humanity into this world".Shay didn't make it to another summer. He died that winter, having never forgotten being the hero and making his father so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!


Sunday, October 07, 2007

Home Make Over

Tonight was Boey's Home Makeover on ABC. Wow. We met Boey's family at the hospital immediately after their return from their trip while thier house was being built. They were under very strict contract about what things they could tell and what things they couldn't. Watching it tonight was even more beautiful than they described. It was neat to see some positive press on kiddo cancer and the smile and strength that so many of the kiddos, like Boey, have. It is that inner strength (and your prayers and support) that has gotten Rebekah this far. Check out Boey and her video at her Blog, and let them know that Rebekah sent you!

We know many of the families that the show showed as we seem them week after week providing meals at the hospital. It was neat to see them on TV. It was also very difficult to see the ones that we have lost since the filming of that show. As many of you know, our hearts are with all the kiddos and their families, especially with the newly diagnosed.

Like always, please take an extra moment to realize that but for the Grace of God today could be the last day with our children for any one of us. Please do not let tomorrow be a day that you would regret if it turned out to be your last chance with your family.


Thursday, October 04, 2007

Thank You

Thank you to all of our regular readers. We know that you all care very much about Rebekah, our family and how things are going with us. Much of the time, however, what is going on with us is not much compared to what is going on with other kiddos who have stole our heart. Thank you for also sharing these kiddos with us.

With that in mind, let me introduce you to Kiersa.
Kiersa is a beautiful little almost three year old that has been diagnosed with Ewings, the same type of cancer as Rebekah. Although Kiersa's tumor is not in the same place as Rebekah's was, her age brings things very close to home for us. Her family has travelled from far to be treated here in Portland and they are so early on in the process that they don't know which way is up. Please join us in prayer for them, asking specifically for support, courage and miraculous healing. We all KNOW it can happen.

Please also watch Home Makeover this weekend as Boey and her family will be featured as their home (and lives) are re-done.


Tuesday, October 02, 2007

Way too close...

In Loving Memory of Angela O'Laskey

Way too close together to our last White Rose. Angela was a 14 year old diagnosed with Ewings (the same type of cancer as Rebekah) in January of this year. In March she found Rebekah's site and posted the following comment:

i was just diagnosed with ewings sarcoma 3 months ago it is in my leg and neck i am very scared i am 14 the blogs that i wrote were some of the most inspiring pieces i have read if you had time i wold like to write to you my email is
Angela O'Laskey

After that post, mommy and daddy shared some very inspiring emails with Angela and then they dropped off. We had not heard anything about her until today. She died 2 days ago. This was an extreme shock to us as she has been in the back of our mind ever since March.

Particularly touching to us today was a quote in the Rochester Democrat and Chronicle by staff writer Meaghan M. McDermott. In this article about Angela, she wrote "On Sept. 22, schoolmates and others from the community made Angela "Queen for a Day" and held a special prom just for her and her friends."
8 days later Angela was gone. We can only pray that Rebekah is able to grow up to be as beautiful a lady as Angela and gets to attend her "prom."

Please lift up your prayers and continue to support these families and groups supporting them and kiddo cancer research. Enough is enough.

The beautiful white rose that has touched so many of us in so many ways is by and used with permission from Australian photographer Lisa Hocking Please see her blog and thank her for its use.