Three Day Weekend!

Things are going really well. Kelby is so happy. She likes have a "special tube" that comes out for the weekend. I don't know if she'll have a hard time on Tuesday when it is time to get a new one. She was pretty upset on Monday when she got it accessed. There isn't much to tell you about her health right now. We are just doing this radiation and then it will be wait and see again. That's why we have to find fun things to keep us busy. I wish the weather were going to be better for this three day weekend. I guess we'll have to find fun things to do inside to keep out of the rain. I took Kelby and Tegan to a Tea Cottage today. We dressed up and met Gramma Debbie there. The girls got to pick out their own cups and had tea sandwiches and goodies. I think they had fun. I took about a million pictures and had a great time myself. Speaking of the rain, Mike is going to be canoeing in a race for 3 hours tomorrow. I hope the river they'll be on isn't too swollen and dangerous. He'll be cold and tired when he gets home tomorrow. His friend and him did this last year too. It is part of a big relay race in Bellingham called the "Ski to Sea". My girlfriend moved into a house down the street this week. I helped her unpack a bit yesterday. We seem to have no problem finding things to fill our time. I really want to work on some scrapbooking that I've put off for a while, so that's what I'm up to next! Hope everyone is having a great weekend.

At the Tea Cottage

Good Weekend

We had a wonderful weekend. After only three treatments, Kelby's arm is feeling so much better. She still doesn't use it much, but it doesn't make her scream when bumped. We haven't had to give her the pain medicine except at night. We are so thankful that she is feeling better. Life would feel almost normal but for the driving to Seattle everyday. At least we get the weekends off. It looks like we'll be going for two more full weeks and then three more days. It takes us about 1 1/2 hours to get there in the morning and about 1 hour to get home. It's a lot of driving, but Kelby watches movies, so she isn't too bothered by it. The hardest part is that she has to be hungry until after the treatment because she has anesthesia every day. At least the treatments are early each day. Each treatment takes about 15 minutes. Then they bring her back to me asleep and I hold her until she wakes up. After each of last week's treatments she woke up cranky. Today they gave her something different and she woke up perfectly happy. This will be so much easier. Once she's awake we head home. We've been getting home around noon. Since Mom has been here, she watched Anika and Tegan while I was gone. Otherwise Debbie has done it. I'm so thankful for them. It has been nice to have my mom here. She did my laundry and the dishes! Thanks Mom! And I just want to say thank you to everyone for all your support, help, and prayers. Kelby is set now with button up shirts that make it so much easier to get her dressed. We've gotten money for gas and meals from our church and friends. We appreciate it so much. God is taking care of us through you. It looks like life will settle in again to a new norm. The daily treks to the hospital will be just a part of life...and soon they'll be done...only 11 more treatments after today. We'll again be worried about every little fever, pain, or cry...but otherwise we'll try to live as normal as possible. Life would be too tough to handle otherwise. Hopefully we'll get to do a lot of fun stuff together. Mom and I took the girls to a movie on Saturday. We saw Shrek 2...which was probably more fun for Mom and I, but it was just fun to do something, especially since it was a rainy day. Yesterday we packed a dinner and went to the beach. The girls has a blast combing the beach and watching kids dig for clams. These are the things I want to fill my time with this summer. We will try to keep worry and fear far from our minds while we enjoy life. I hope that you all will try to enjoy your lives too this summer. Don't forget to make your own moments and appreciate them. Don't be fearful for our future...please just pray for us and then trust us to God's care. He's shown Himself to be trustworthy. God bless you all.

Peeking Under the Picnic Table Combing the Beach

A New Port

Today Kelby and I are at Children's getting her new port. She is very brave. The only thing that bothers her is having to put on a hospital gown instead of her own clothes. Today they let her not change, so she was happier. She has learned how to whistle and wants to show everyone how she does it. Also. She can't get enough bubbles it seems. She'll while away hours just blowing and catching bubbles. Good thing I brought some today. It always involves a lot of waiting when we come down here.

We are excited because my mom, Kelbys Gramma DeeDee, is coming tomorrow. We'll be picking her up at the airport after Kelby's radiation treatment on Wednesday. The distraction will be fun.

Kelby's arm didn't seem to get worse over the weekend. She only needed her medication at night. We didn't do too much this weekend except do a little shopping and movie watching. Yesterday I put up the tent in the backyard for the girls. They had fun pretending to sleep in there.

Kelby has been the best big sister lately. She always brings stickers home for Tegan and saves the last cookies for her. Cookies!! Can you believe she wants to share cookies? I said, "Here Hun, you can have the last cookie." She said, ''No way! That one's for Tegan." Tegan doesn't understand anything except that Kelby is very sick and her arm hurts. Tegan has been enjoying hanging out with Gramma Debbie though! I miss those other two girls when I'm gone, but I don't worry about them because they are in good hands.

For awhile there I was feeling pretty mopey..a little blah...numb. I felt like everyone should know that my daughter has terminal cancer and feel sorry for me. But...most people we come across don't know and so I had to feel sorry...for myself. Well, forget it. I don't have time to be sad and feel sorry for myself. One of my favorite quotes from my high school years is: ''Life is 10% what happens to you and 90% what you do with it." Before I can ejoy every minute, I have to change my attitude. Funny thing is that this all hit me the other day when I was shopping by myself at Wal-Mart. I was in a good mood and was nice to people. I forgot to feel sorry for myself and it felt good. The emotions are a rollercoaster, but I haven't been letting myself feel anything. Instead now I want to let myself feel happy. That way, I figure that I can feel sad when I need to...but I don't need to yet.

Radiation Getting Started Soon

It is hard to find the time to sit down and write updates, but I really want to keep you all updated. We didn't find out the results of the Tuesday bone scan until Thursday. It looks like her arm is the only spot right now and her bone marrow is clear too. We are sure thankful for that!

They had put a special IV in her arm on Tuesday called a Pic line. It was supposed to make it so she wouldn't have to get any more pokes. On Wednesday night I had to flush it with Heparin to keep it open, but it didn't work…it really hurt her. So, yesterday we had to go to the hospital early to see what was the problem. They took an x-ray and decided it wasn't in a good vein. That line will have to come out now. After discussing it with her doctor, I decided to let them put in a regular port. Before, she had central lines that were tubes that stuck out of her chest. This ''port" is something that is just under her skin and can be accessed easier than and IV can be started. I guess she'll still have to get a poke on occasion, but only once a week at the most. They will basically set up an IV hanging from that ''port" in her chest whenever they'll be using it. They will have us put numbing cream on it before they poke her so it shouldn't hurt and she should get used to it. The benefit is that when they don't need it, she won't have anything sticking out of her. It won't keep her from swimming or be a danger of infection and I won't have to change her dressing every day.

These have been long days at the hospital. On Tuesday I didn’t make it home until 7:00pm. After resolving the pic line problem, an appointment with her oncologist, and another appointment with a radiation oncologist at another hospital we finally made it home at about 5:00pm yesterday. While we waited in the afternoon for them to place another temporary IV in her hand, the child life specialist from the oncology ward came and talked with Kelby and I. She helped Kelby to not be afraid of the IV by using a puppet and letting Kelby “place the IV” for the puppet. They will be doing the same thing for us with the port as well. She seemed to respond well with that lady’s help although she was still upset when they put in the IV in her hand. She needed the IV so they could give her anesthesia today for the radiation simulation. I am going to keep that IV working over the weekend by flushing it every 8 hours with heparin so she doesn’t have to get any more pokes before they put in the port.

We got the simulation done today and were home before noon. Simulation is the first thing they do before starting treatment. They tattooed her to mark exactly where they need to radiate. It looks like we will be starting radiation next Wednesday. Treatment will be every weekday for about 3 weeks.

Hopefully we can have a fun weekend before things start getting crazy next Tuesday.

Before the Relapse...

There was so much that I needed to post on the website before Kelby's cancer came back. This update is for April even though I am writing it in May. Time was just getting away from me before, but now I NEED to take time to think about some of those fun things we had done lately. I NEED to write down things down because I have such a bad memory.

Anika is growing bigger and bigger. I was worried about her weight there for awhile and whether she was getting enough breast milk. I guess she's just a little girl...just like Tegan was. I don't know how I made such little girls when I come from a family of Amazon People.. :) ...you know...everyone is over 6 feet tall! Oh well, maybe they'll be cheerleaders some day. Anika is sleeping great through the night and is so easy during the day now!

We had a lovely Easter. We went over to Gramma and Grampa Wright's house after church. The cousins all had an Easter egg hunt in their woodsie back yard. The girls and I dyed some eggs together the night before. They love that part of the festivities.

Then...of all things...we got a dog. We weren't expecting to get a dog at all...though Michael and I had just started talking about it more. Kelby loves animals so much and had been asking for a pet. Mike saw this little mutt while he was working at the Burlington police department, but he already had a home. Mike told them to call him if he didn't work out with that lady...so they did. He is sooo cute. He is a little dauchshound mix dog, so he won't grow any bigger. The girls love him, I love him. It has worked out great.

I have redecorated my livingroom. It got painted, new furniture, rearranged and everything! The walls are a light green and a yellowy tan...and I will be putting in one small dusty blue accent wall. It looks great...so clean and fun. The downstairs has need something for awhile. Now my walls are a little bare because I haven't found anything to replace all my woodsie bear and moose decor. I had a garage sale the last weekend in April and made some money off it all. I guess we got a new look for a new season in our lives. I enjoy it and it make me feel peaceful.

Well, that is about all that I can remember from April. Of course at the end of the month, Kelby started not using her arm very much. That lead into our discovery that her cancer was back. I may try to update this site on occasion while I update Kelby's site. That way I can still get some pictures of Anika and Tegan online. I got a new digital camera, so I should be taking lots of pictures and video! (Don't get your hopes up too high...but I'll do my best." Here's some pictures from April to tide you over.

		April 2004 VIEW SLIDE SHOW DOWNLOAD ALL

		May 2004 VIEW SLIDE SHOW DOWNLOAD ALL

Waiting to Find Out More

We are hanging in there. We had a busy weekend. Tegan's birthday was on Saturday...and of course there was Mother's Day on Sunday. Today we had a little family party with all the cousins for Tegan. It was enough to keep us pleasantly busy while we wait for the bone scan tomorrow. This will tell us what our next steps are going to be. Kelby's pain has gotten worse over the weekend. We have a prescription for something to help with the pain. Tomorrow she'll also get a pic line with is a type of IV that can be left in for a couple weeks. That way she won't get any more pokes after tomorrow. We got a portable DVD player for our trips down to Seattle. Now Kelby can watch movies in the car and we can watch them together at the hospital during all the waiting. We had been planning to fly to Arizona this Saturday...just me and the three girls. I had to postpone that...until Kelby's arm is feeling better. She's just in too much pain to handle much. We are hanging in here...crying sometimes...and hoping other times. Kelby is sooo strong most of the time. She is amazing girl. We hope that we appreciate every second as much as we should.

Anika Tegan Opening Presents Kelby is using her left hand to eat now because her right hand is the one that hurts.

God Has Prepared, God Will Protect, God Does Provide

Thank you to everyone for your kind words by email and in the guestbook on the website. Our trip to Children's on Tuesday was a long day. Anika and Tegan stayed at Grandma Debbie and Grandpa George's while Michael and I went down. We had an appointment with Dr. Park. She had us get a CT scan of Kelby's torso & neck. That confirmed the cancer was in her arm, but they didn't find it anywhere else. On Tuesday we have an appointment for a bone scan which will tell us if there is cancer anywhere else in her bones. If it is confined to her arm, we'll have radiation done to it in the next couple weeks. That will require about 2 weeks of driving down to Seattle every weekday. It might mean she'll have to have a central line put in again, but maybe not.

Other than the radiation, there isn't a lot that we can do that doesn't have difficult, painful side effects. There is no standard of treatment for her at this point. There are experimental studies, but they aren't proven helpful, so we don't want to put her through them. If she was old enough to understand...she might be willing to put up with the extra difficulty in order to provide help for others in the future...but we just don't think she would be able to put up with that. Dr. Park said that sometimes they can chase around these bony metastases with radiation for a couple years...so maybe we have some time. At the time that there are too many spots to effectively radiate, we would have to switch to hospice care. This is just what we understand as it is now. We should know more after Tuesday's scans.

Now, you must all understand that God is taking care of us already 100%. There are things that we realize now that were preparing us for this situation. Mike just changed jobs. He went from something that didn't keep him busy enough to something that he enjoys and gives him a lot to do. This means we're not adding frustration onto frustration at work. The insurance was transferred over fine although the out-of-pocket was higher in the new plan. However, I just asked Children's Hospital about their financial aid and we qualified! That means that we won't have to pay anything out-of-pocket! Praise God for the things we didn't even think to ask him for yet! Mike's job is very flexible and the people he works for seem to be so amazing and kind. Also, we just got a dog. He is an excellent playmate for the girls and especially for Tegan when her sister isn't feeling good. Mike's mom and dad have just come to a point were they are available to watch the two girls when we need it, having just settled into their new house and finalized the sale on their other. They just got a dog too which is really fun and distracting for Tegan when she's there. I know there are even more things that God has provided for us that I can't even think of right now. It is just more evidence that He is in absolute control...and kind, faithful, and wonderful in our time of need.

Kelby learned how to pump her legs on the swing today! We are so proud and amazed since we've been working on it for some time. She is such an amazing girl. Thank you all for your prayers. We are hanging in here & I still feel that sense of peace. It must be because you all are praying for us!

Kelby's Cancer is Back

Although Kelby had scans in February that came back clear, we found out last night that her cancer is back and has spread to her upper right arm. She had stopped using that arm much this last week, so I took her into the doctor yesterday. They took an x-ray and the radiologist thinks that the boney changes to that bone are metastatic neuroblastoma. There is what he called a "pathological" fracture due to the weakness of the bone. The amazing thing is that she isn't in much pain with it at all. She still uses her arm except for certain directions...she just chooses not to move it much. They have her in a sling. Today we are going down to Children's hospital to see what we will be able to do for her.

Right now I am either in shock or feeling a great sense of God's peace. Perhaps shock is God's peace...His special mechanism to help us deal with things. So, I'm handling things okay right now. It is something that we suspected would happen...although we were just getting used to the idea of having her around for a very long time. We are truly thankful for these last two full YEARS of almost perfect health and happiness. She has lived like a normal preschooler and has been thoroughly happy.

The thing that brings me the most peace is knowing that there are always reasons for God to let us go through something like this. He knows the bigger picture and has a plan. I trust that plan more than I trust my own.

I'll lend you for a little time a child of mine, He said ...
For you to love the while she lives ... and mourn for when she's dead.
It may be six or seven years, or twenty-two and three,
But will you, till I call her back, take care of her for me?

She'll bring her charms to gladden you. And shall her stay be brief,
You'll have her lovely memories as solace for your grief.
I cannot promise she will stay, since all from Earth return.
But there are lessons, taught down there, I want this child to learn.

I've looked the wide world over in search for teachers true,
And from the throngs that crowd life's lanes, I have selected you.
Now ... will you give her all your love ... nor think the labor in vain?
Nor ... hate me when I come to call ... to take her back again?

I fancied that I heard you say ... Dear Lord, it will be done!
For all the joy Your Child shall bring, the risk of grief we'll run.
We'll shelter her with tenderness. We'll love her while we may,
And for the happiness we've known ... forever grateful stay.

But shall the angels call for her much sooner than we've planned,
We'll brave the bitter grief that comes ... and try to understand.
~Edgar Guest