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.

Sunday, April 22, 2007

Pray For Rachel

Please Pray for Rachel and her Mom Jodi, Dad Mark and brothers Blake and Lance.

Here is their latest post:
Sunday, April 22, 2007 5:15 PM CDT

Yes, yesterday was not a good day. We were quite frightened by the events that took place and it hit Mark and I quite hard with the realization that Rachel is going to die. She had such incredible pain and screamed and screamed and screamed. I had no sleep that evening (Rachel and Mark didn't get much either) and the entire family went to the hospital very early yesterday morning. Rachel finally slept at the hospital (didn't even have new pain meds started yet) but all too soon it was time to leave to go to her birthday party. As far as her party is concerned, in two words, it sucked. She was in pain, and wasn't able to interact with her friends at all. She did open her gifts and she did sit at the table and have a couple of bites of cake, but otherwise she was in Mark's or my lap. Mark and I felt horrid yet that's where she wanted to be. How do you deprive her of that???? I really don't know what her little friends thought (or their parents), but again, she so desperately wanted to be there. And so she was.

After the birthday party she went to bed. As the night wore on, Rachel's breathing became more and more shallow with periods of no breath at all. We really didn't think she was going to make it through the night. Family and friends gathered and we prayed over her, we anointed her, we were with her, and we prayed some more. She made it through the night and today her breathing is deeper, more even, and not as rapid. We've actually turned down the pain meds because we feel she's overdosed on them. Hopefully we'll be able to find that fine line between pain coverage and loopiness. She's drinking, she's communicating more, and we're seeing her fiestiness.

Some things were brought to light to us late last night. Jesus healed the sick. He made the lame to walk. He made the blind to see. He even brought Lazerus back from the dead. We know that God can perform miracles. There is absolutely no doubt about it. Miracles happen everyday. They really do. So, just because Rachel seems to be in a dire place, does that mean that we should stop believing that she's going to get a miracle??? NO!!!!!!!! We MUST believe it! It's not enough to KNOW that God can do it, we must all BELIEVE that He WILL do it!! Envision her alive, happy, healthy. Envision her riding her bike with her hair flowing behind her, in her swimsuit jumping through the lawn sprinkler, in her prom dress walking down the stairs to meet her date, driving away in her car, walking down the aisle at her wedding. POSITIVE thoughts provide positive energy. Belief in what God will do.

There are too many of us who believe that we have been told by God that although Rachel's road wasn't going to be a picnic, that in the end she would be healed. We have to hold to that now. Now is when faith is tested. Mark and I feel better today because we are believing God is going to heal her and not letting Satan take us into that dire spiral. Delusional? Faithful? We feel better. And that peace comes from God. Is that delusional? We are expecting a healing here on earth. That can only come from God. Please join us in believing. Let God know that you BELIEVE that He will heal her. Again ... with faith as small as a mustard seed, we can move mountains. We BELIEVE!!!

Specific Prayers:
~That Rachel be given the miracle of a cure on earth!!!



Friday, April 20, 2007

Rebekah Continues to be Sick

Rebekah isn't getting any better. Her fever has gone up to 102 and might drop to 100 on tylenol or motrin. She clearly doesn't feel well, and wants to lay on the couch or take a nap much of the day. Although she has spurts where she seems fine. This morning, she started coughing, too.

We decided that we should head to the doctor and that she probably needed antibiotics, so we called this morning to get an appointment and headed in this afternoon. It looks like she has an ear infection. So, she is on antibiotics again.

She's not eating, but she is at least drinking and staying hydrated. And she's drinking milk and her juice drinks so she is getting halfway decent calories. She still isn't getting enough, but some is better than none. And hopefully, once the antibiotics kick in her appetite will increase.

So far, Sarah seems to be doing ok. She does, however, want cough booboo medicine any time that Rebekah is getting any type of booboo medicine. She isn't coughing, but she seems to want the attention of medicine. They have ween waking up at 5 am when usually sleep until 6am or 7am (or on occasion 8am). Makes for a tired Mommy (and Daddy for that matter).

McKenna is back in the hospital with fever and low (almost non-existent) counts. I remember those days with Rebekah. Please pray that her antibiotics and blood transfusion helps her to feel better.

Today Rachel turned 7. She still needs lots of prayers.


Wednesday, April 18, 2007

Rebekah Seems to be Getting Sick - Ugh!

We started early, with a trip to the dentist so she could get a look at Rebekah's mouth and how wide she can open. She needed to determine how to proceed with filling some cavities. It looks like we'll be going to the Hospital Operating Room and she'll be having general anesthesia. We talked about either doing it the week before our Make A Wish Trip or waiting until the middle of June. Dr. Wilson thinks we can wait and I really don't want to do something like that right before vacation, so I think we'll do it in June. Also, the June date means that she won't miss school for the day because school will already be on break.

As we pulled up at the dentist office, I noticed that Rebekah's nose was full of green and blood-tinged snot. Oh, lovely... Just what I wanted.

Then we headed into Speech Therapy and then to school. After school, she didn't want to eat. She said she didn't want to eat more and I was pretty sure she had eaten something at school (based upon the crumbs around her mouth) so I didn't push her. When we got home, I took the girls in to sit on the potty and then put them down for a nap. It took a little while, but they both fell asleep.

The slept for a reasonable amount of time before starting to make noise. Rebekah played for a little while and then wanted to go back to sleep. At that point, I knew Rebekah wasn't feeling well. That is not at all like her and when you add that to the nose issues and the not wanting to eat it is clear that she isn't feeling well. I checked her temperature and it was 100.3. I gave her some tylenol and after resting for a little while she was ready to play some more and drink some juice and eat a bite or two.

Tonight, after I put her to bed, she wanted a yellow bin (that we use to throw up into). I asked if her tummy was upset and she said yes. She didn't throw up, but she took the yellow bin into bed with her. I don't know if she would actually use it, but it doesn't hurt for her to have it. I'm going to guess she won't be going to school tomorrow. That is unless she makes a remarkable recovery. One day at a time...

This afternoon and evening, I was working with the girls on not sharing food and drinks and not putting toys into mouths. I don't look forward to both girls being ill.

Please continue to pray for Rachel and her family. Things are not looking good. Check out her page for details.

Gage is out of the hospital after his transplant, but with lots of restrictions. Keep him in your prayers, too.

McKenna is at home after her chemo with low counts. Pray for no fevers, so she can stay home.


Sunday, April 15, 2007

Rebekah and Her Speech

Rebekah is making some good progress with her speech. I've noticed it in several ways. For a while she was trying to say "I help Mommy" or "I help Daddy" and she started out saying "Mommy help me" or "Daddy help me". I have been gently correcting her and then she started saying "Me help Mommy" and now she's saying "I help Mommy". What a great improvement!

The other day, as we were driving home, she said "I see my home". Wow - a four word sentence! She continues to say that periodically when we come home.

We've been talking about street lights and using the phrases "Red Stop" and "Green Go". The other day, we were stopped at a green light and just ahead of us was the traffic light ahead sign with the picture of the lights. She pointed to it and said "Green Go".

I'm hearing more sounds from her and she's starting to put more than two words together. What a difference in the last few months. I'm really kind of excited about the changes. She's got a long way to go, but the changes and improvements are good.

We've been pushing Speech pretty hard - at school, two different speech therapists, at horse back riding and at home.

Please pray for Rachel. She is in desperate need. Check out her page for details. On the positive side, Rachel got to throw out the first pitch at the Twins baseball game Saturday. Rachel is a young lady who has been exactly where we are, having been treated for Ewing's Sarcoma and then gone into remission. Unfortunately, Rachel's cancer came back. She has survived far longer than anyone said she could (watch the video link on her site) but is not doing well.

Please continue to pray for McKenna as her treatment continues.


Tuesday, April 10, 2007

The Update Promised

We had a nice Easter. We got up and went to church with Grandma A and stayed for their Easter brunch. That has become our Easter morning tradition. After that, we headed home to get ready for Easter dinner at our house. We had a great meal with all the Grandmas and Grandpa and Uncle Chuck and Aunt Molly and cousin Cole and friends Dave and Karen and their son Ian. It was a laid back lunch with everyone pitching in and helping. In many ways, it was a "typical" Easter day and for that, we are blessed. We've learned that the most important thing is spending time with family and friends and that we don't have to be stressed about having everything perfect or about having an extravagant meal. If the family is together and enjoying the time, that is what is important.

We continue to keep up with school, therapy sessions and just life in general. It keeps us busy. We have been pretty healthy over the past few weeks, so we haven't had to cancel any appointments for that. Always a good thing.

Rebekah's eating continues to be challenging. Some days she eats better than others and some days she'll eat one thing and the next day she won't touch it. It makes it difficult to know what to try to feed her. Slowly, her weight is going up. Well, right now we're still trying to gain back the weight that she lost last month while not feeling well, but at least she's improving. Little by little.

Potty training is slow going. We've started rewarding the girls with chocolate covered raisins when they have a dry pullup and go peepee or when they go poopy in the potty. That is helping, but Rebekah still isn't ready to go back to big girl underwear. One day at a time...

The girls are learning to walk like different animals. They walk like bears - on hands and feet. Sarah does a really cute frog jump, jumping up from a squat with her hands on the floor in front of her and then back to the squat position. Rebekah tries the frog jump, but doesn't quite get down to the squat position. They also try to walk like crabs - on hands and feet, but walking sideways. They are still learning that one and don't do a perfect job at it.

Sarah has really gotten excited about Mickey Mouse lately. She notices him anywhere we see him. At bedtime (and naptime) the girls can each pick one stuffed animal or baby doll to sleep with. Sarah will often choose Mickey Mouse. Rebekah will sometimes want Mickey Mouse, too, but not as often as Sarah. When we were at Costco last week, we found a Mickey Mouse DVD, which the girls had to have. Now they want to watch it all the time. We were beginning to wonder if we should change the trip to see Dora to go see Mickey Mouse instead. We asked the girls that question, and at first they said yes. Then Rebekah was quick to say she wanted to see Dora.

When we started talking more about Rebekah's Make-a-Wish trip, the girls started asking if we were going tomorrow. Mommy decided to put together a calendar to help the girls to "see" when we would be going to Ohio and what we are doing each day. We have a picture for school, one for speech therapy, one for occupational therapy, etc... There is an airplane on the day we fly to Ohio and the day we fly home from Ohio and Dora for the days that we are at King's Island.

As part of our bedtime routine, we cross off the day (Sarah makes one line of the x and Rebekah makes the other line - both with Mommy's help) and we take a look at what tomorrow looks like. The calendar seems to be working and the girls are no longer asking if we are going to see Dora tomorrow. They make sure that we cross off the day. The calendar is in their room, so they can see it whenever they want.

Please continue to pray for McKenna. She started her Chemo this week and she continues to have some concerns and could use some prayers.


Sunday, April 08, 2007

Easter Sunday w Grandma

Pics for now, story and updates to follow later:

One from Grandma Adams:

One at Church w Grandma Adams:

Compare to two years ago:


Tuesday, April 03, 2007

A well intentioned question...

Multiple times over the last week we have had people ask: "Did he get to the scissors and cut his own hair?" The tone of our answer usually changes depending on how many times it has been that day that we have heard the question, but we usually at least try to be polite when we say 'No, she is suffering the effects of chemo therapy and we are doing the best we can to help her outer beauty match her inner beauty.'

You can totally understand people asking, but it is somewhat humorous to see them try and back peddle when they learn the truth. It all goes to show you, perspective. Just when you think you "understand" about someone else's life by looking at it from the outside you learn that you many not have a clue.

Mommy just pointed this out:
for more "stupid" cancer related quotes.