Wristbands and Other Help

In addition to the major help that many many many of you have already been, some have been asking about how to help in other ways. Let me first say that prayer and sharing the word about Rebekah so others can pray is 100x bigger than any other help you could provide.



Frances and I have been wearing some wristbands in support of Rebekah. They read "REACH THE DAY" and are from the www.curesearch.org website which is a wonderful source of knowledge and has been very important to us even in the short time we have been dealing with this. The words have double meaning; "THE DAY" is meant nationally to be the day that no child has to deal with cancer and for us personally (and for you if you would wear one) it also means the day that Rebekah becomes cancer free.

Our original pack of 10 wristbands for us and immediate family was provided to us by a wonderful, loving, long term friend back in Ohio named Suzanne - thank you Suzanne! If someone would like to order some more that we can pass them out to more local friends and family that want to help support, please let us know and we will try and organize that. If any of you would be willing to order some and pass them out to your families, churches, etc. that would be awesome too!

Finally, a few have been asking about money. I absolute hate having to think that we may actually need help in dealing with all of this but is becoming very clear that long-term this will be devastating. Frances and I are paying completely out of pocket for our medical insurance and that is covering 80% of her medical bills. That insurance is only available until October 1st. We are just now getting a realization (first bills rolling in) that the monthly insurance combined with the 20% is overwhelming. We want to make sure that things are done right and are meeting with an attorney who works in dealing with these kind things. Hopefully next week we will have an avenue for you to help, if you would like.

Again, thank you all for your continued prayers, thoughts and all the support that so many of you have provided.

Saturday Morning, April 30, 2005

It's 7:51am and all the girls are still sleeping - that is a good thing!

Rebekah finally started to get her appetite back last night and drank a couple of cups of milk, some juice and had a medium bowl of beef stew (something she never used to like). She really had not eaten anything more than a a few ounces of yogurt since Wednesday and it was getting pretty scarry. Let's hope this morning continues on the trend.

She continues to have a lot of medicines to take at home including her shot. Yesterday was the first shot and she did remarkably well - but she didn't know what was coming. Let's see how today goes. Last night she was pulling at the tubes on her central line, showing them to daddy and asking for a "drink". Her tubes are her "friends" and she likes to help take care of them. The hospital staff calls a central line a "buddy". They will get a drink this morning after she gets up. Yesterday we bought a 16" 2 tray tacklebox just to carry her daily medicines and some dressing changes if we go out; something else to go with us everywhere :)

This weekend is more of a chance to try and get things in order so that Monday we can start all over again. Hopefully this week will be just regular appointments and no over night stays. We will let you know.

Thank you so much for the wonderful comments and encouragement. They are obviously read by us and many more. Thank you Steve Sporre for the suggestion of a counter. As of midnight April 29th, there is now one counting the number of hits to this blog. If someone who knows advanced html code will help me, we can get it moved from the bottom of the page up into the left column. And most of all THANK YOU for all your wonderful help and prayers - it is all SO appreciated.

Back Home Again, Thursday

...at least we think it is Thursday :)

Yesterday, the last day of Chemo went much like the day before. Rebekah did remarkably well and was pretty chipper throughout the day. Again, she loved getting pulled around in the wagon. If you want to do anything when we are down in the hospital and you are not sick, come pull Rebekah!

Grandma C spent the night in the room with Rebekah last night while Frances, Sarah and I again slept in the trailer. We got up real early this morning and relieved Grandma C at 5:45am. Rebekah slept until 7:00.

We then started going through all of the home medical care and drugs that are going to be needed. The pharmacy bill alone was well over $300 just to make our co-pay. Many people came by today to help us learn how to do each step. We are going to have to do dressing changes that are traumatic to Rebekah as well as daily injections (some into her central line and some into her skin like a diabetic might have to inject insulin). That all starts tomorrow morning.

Rebekah stopped eating today and has started to develop even more of an attitude, kicking, hitting and just generally not being happy. All she has eaten today is about 3oz of yogurt. Grandma A is here now trying to get Rebekah to eat something but when you even ask her what she wants to eat she just screams. She screamed the whole way home in the van.

We thought we were getting a fair amount of rest but, yet again, did not realize how much things had been dragging on us until we got home and just crashed. Luckily the girls also slept for a little bit. We are really beat coming home from the hospital!

Assuming no feavers or obvious infections in the next 4 days, the next visit to the hospital is Monday where she will have blood drawn and we will get our first look into how her red cells, white cells and plasma are doing. Whether we have to stay at the hospital depends a lot on those counts. Our next chemo visit will be approx. 7 days long starting on May 16th. Until then they have told us there is a 50/50 chance that we will be at home or be at the hospital - it all depends on how Rebekah is doing.

Please pray that God continues to provide the strength for everyone to get through this and most important, that He will reach out and miraculously remove this tumor from her body.

And also please let us know in the comments or email what you want to see in these updates.

Chemo Day Two

It is absolutely wonderful to report that NOTHING of major note medically happened today!

Rebekah is tolerating day two of her Chemo very very well. So far she has no noticable effect and, other than being a little bit cranky with cabin fever, is her same old self.

Grandma C showed up very early, before work here in the hospital and brought real food, cheese and YOgurt, both Rebekah's favorites. Then mid morning Grandma A showed up and towed Rebekah in a wagon all around the hospital all day. Quite a sight with Grandma towing the wagon with Rebekah inside on blankets and an IV Pole tied to the rear axel of the wagon dragging behind them. Rebekah LOVES it. Anyone who wants to come tow Rebekah around the hospital can do so anytime. Then Grandma M showed up and helped us through the evening and is actually sleeping in the room with Rebekah while Frances, Sarah and I sleep out in the trailer in the parking lot. What a day with ALL THREE GRANDMAS!!!!!

Our friends Greg and Christine brought us dinner and played with both girls for a while. This was totally awesome and really appreciated.

Detailed results of the PET scan and MRI were both available today with nothing new. The hospital is providing speech and physical therapy when we are here. Hollywood Video donated an awesome theater room. And the nurses were all really really cool.

Like I said nothing real exciting which makes it as very best a day as we could ever imagine in this situation.

The First Day of Chemo

We started out leaving the house at a reasonable time this morning. We went to Rebekah's oncologist first who had her admitted to the hospital. In order to participate in a special treatment study Rebekah needed an MRI before Chemo could begin. There were no "normal" slots available for the MRI but apparently admitted patients get some sort of priority. It didnt seem like it, though, as we did not go into the MRI until nearly 5pm. That's nearly 24 hours for this little girl to go with nothing to eat and very little to drink. She did have continuous fluid through her central line but that did not stop her from continually asking to eat and drink. It's really tough for a parent to have to keep telling their daughter they can't eat yet.

We got out of the MRI and up to the room just before the evening shift change so we then had to wait until the new shift came on to start the Chemo. Another UGH!

At 9:15pm 3 nurses came in wearing extra tough gowns, extra tough gloves, extra eye protection and bags and syringes of drugs marked with bright yellow and bright orange tags. It truly was enough to scare mom and dad! We found out that the drugs are VERY damaging to skin, veins, etc. if not properly diluted. We even have to wear the extra thick gloves to change her diapers during and just after Chemo. All supplies, diapers, wipes, etc. need to be thrown away in a bright yellow chemical exposure bag.

It was really tough for daddy when the first syringes went in. I just held Rebekah, touched her face and continually prayed that these drugs do their job and that she is otherwise protected from their horrible unwanted effects. This is really tough.

Mommy is up in the room tonight with her and daddy is out in the camping trailer in the hospital parking lot trying to get caught up on some work. We have always liked to get away in the camping trailer so it is set up with a full office including internet connection - but we never expected it to be used this way.

We thank you all for your continued prayers and support. We have an awesome God who directs us to ask for miracles and expect them to happen. We are and we do. This will be a long haul and we ask and pray that you all continue to have the strenght to lift Rebekah, Sarah, Frances and Scott up throughout the whole process.

It's ALL gone...

I don't think this one needs much explanation.

Before:



After:


Rebekah is just fine with it...but daddy, well, that's another story...

Sunday Morning, April 24, 2005

It has taken two days at home to get caught up to just being behind. Rebekah is having a hard time getting to sleep at night but sleeping quite well once she is asleep. Last night when she was screaming trying to go to bed daddy laid down with her and she stopped crying, calmed down and reached over and put her hand on his shoulder and kept repeating "da da" as if to say "it will be okay daddy." Yesterday mommy tripped and fell and Rebekah put down her toy and came running to mommy asking if she was hurt. Rebekah's mothering insticts are phenominal! During the day she is her energetic, playful, mostly normal self. We have had a few visitors this weekend and she is enjoying the attention and sharing her room and toys with anyone who will play.

We have a large box of medical supplies to help take care of her central lines at home. In that box are some syringes with saline solution. Everytime Rebekah sees a syringe now she lifts up her shirt, points to her central line tubes and uses her sign language to sign "drink" or "thirsty." She is a really smart girl and knows a lot of what is going on.

Today, Sunday, will be difficult for mom and dad as we are going to get her beautiful hair cut. Other than having her bangs trimmed, she has never had a hair cut and, when wet, her curly hair straightens out all the way down to her bottom. We are going to try and save as much as we can. Grandma is taking us to a very accomplished well-known stylist to help with this endeavor. We will try and post some pictures later this afternoon.

I very much hesitate to even start trying to thank all of the people who have been such angels in our lives but I do have to make one very special mention. Kathleen Duling from Banks Fire has been here many times, made meals and most recently spent Friday night here to help take care of the girls allowing Frances and I to get an unprecedented 7 hours of sleep. Thank you Kathleen, and thank you all of you who are helping in so many ways. I pray that God will bless you all 10x over.

And speaking of prayer, a new client just wrote to me: "Regarding your daughter, remember to pray not just asking for healing, but fully expecting his healing. Remember the lesson of the mustard seed, and James’ instruction to ask and keep asking. God does answer prayer." I can't add anything to that except Amen.

Friday Evening, April 22, 2005

We are back home after two very long grueling days. Most important, Rebekah is doing pretty well. She has two "IV" tubes coming out of her right side just "outside" her breast and under her arm. She has been leaving them alone very well. She is very tired as are we all and she is showing it with outwardly hostile and unacceptable behavior.

Thursday night we did not sleep at all and we are at our wit's end right now. If these last two days are any sign of what is coming up starting Monday (4-6 days in the hospital every 2-3 weeks) I am not sure yet how we are going to make it. We will, but I am not sure how.

It is becoming increasingly obvious that one of the biggest helps that we will need is helping to take care of the girls when we are at home. This is especially true right after coming home from the hospital so mom and dad can get some semblence of our lives put back together and then get some rest. It is also clear that we may need some help with baby Sarah while we are at the hospital (especially sleeping with her). We will have our camping trailer there so there will be at least a private place to get away if at all possible.

Many many many of you have expressed a desire to help. As I started above - taking care of the girls during and right after is one of the biggest areas that you can. Whether it be that, or anything else that you are willing to do I ask you to please contact ***Mindy Hughes, a very good friend a volunteer coordinator for us at 503-459-3523***. Update - Mindy has been overwhelmed with A LOT of work (we're thinking about you Mindy). Please now contact Robyn Rogers at 503-357-5181. Please let her know what you can do, when you can do it, and ????

And please please please keep praying for Rebekah and us.

An afternoon update...

Rebekah is out of surgery with the central line installed. They took marrow from two places on the back of her pelvis/hips. She is sitting up and eating crackers and drinking milk. She is a bit lethargic, but over all she is doing great.

Everytime someone comes in wearing a hospital coat or scrubs she starts saying and signing "all done".

24 hours of vital stats collection and we should be done on our way home.

Wednesday, April 20, 2005 - a big day and the diagnosis.

I know this post is going to change multiple times as I try and re-write it to be more concise, but for now, here goes:

We were up at 2am this morning. Sarah woke Rebekah, or was it vice-versa? Either way neither of them let the other get back to sleep until 4:00 am when we had to get up to leave at 4:45am. At 5:15am we picked up a VERY good friend Pat Johnson (thanks Pat and Steve) who spent the whole day with us. At 6:00am we were at Providence Portland hospital for the PET scan.

The PET scan went very well, anesthesia, recovery and all, and we were packing up ready to leave there at about 11:00am. We were off to Emanuel Hospital to meet more doctors.

We first met the doctor who will be putting in the central line tomorrow, Thursday. We then had a quick lunch (Grandma Carolyn was able to join us!) and to meet with the oncology team as nearly all of the test results were back.

Let me first say that she has cancer, it has matastisized throughout the head and neck (though not to the rest of the body as was determined earlier) and surgery is not an option to remove it.

The diagnosis is officially Ewings Sarcoma - a bone cancer although we have learned that a bone cancer can also live (grow in?) soft tissue as well and this has. The planned course of treatment is extensive chemotherapy on a 3 week cycle (although we may enroll in a trial group that is investigating 2 week cycles) where chemo is administered every third week. When being administered she will be hospital bound for 3-5 days depending on which drugs are being given. Then we will be home for two weeks (1 week if we get in the trial) and back for more. Any complications, infections, sicknesses, etc. will find us in the hospital during the off week(s).

This will continue for 12 weeks and surgery will be scheduled. The HOPE AND PRAYER is that the tumor will then have shrunken enough to do surgery. This is not by any means guaranteed and using the word "likely" is probably too strong. WE NEED PRAYER FOR A MIRACLE HERE PLEASE.


I won't mislead you with figures and percentages as statistics don't mean anything when its your little girl - she is the only one that matters and not the other 99/100 people.

This type of cancer is rare in small children. The very active oncology group that we are in saw one case "similar" a "few years ago". They are part of a larger consortium but it is still very rare. They are, however, very familiar with this type of cancer which is supposed to behave quite similar across the board without regard to location or age of patient.

At this point we are scheduled to be admitted to the hospital tomorrow and have surgery again to put in the central line and harvest bone marrow. They will then keep her for 24 hours to establish base line (pre-chemo) levels for heart, kidney and other organ functions. We should be able to go home over the weekend and will have to return again on Monday for chemo to start. Then we will be on the cycle I talked about above.

The final thing we had to do today was talk about money with the social worker. Wow. We are privately paying for insurance right now and that plus the deductibles and copays are going to be horrendous. Frances is not able to work hardly at all. Please pray that God provides a way for me to be with Rebekah and and the same time for my practice to pick up in a way I can handle it in order to support this.

Again, I am sorry this is rambling and I will make some changes later, but for right now this is what we know and my brain is not working totally straight.

Go home, hug your own kids a little extra longer, and be thankful for a beautiful day. And please, keep praying...

A Quick Update on Schedules

Dr's have called with some scheduling updates. Tomorrow morning we will be at another hospital (Providence, Portland) for the PET Scan. Immediately after the PET Scan we go back to Emanuel for an appointment with the surgeon who will be putting in the central line (probably a Hickman for those of you that know/care).

Surgery for putting in the central line, the bone marrow aspiration and ???? is scheduled for "probably Thursday" - but no one could tell us exactly when yet.

Still no word on an official "diagnosis".

Thank you all for everything so far - we pray this is going to be a long ordeal and will need your uplifting strength for some time to come.

A little bit of research...

Our oncologists have suggested a research site called www.curesearch.org It is quite conservative but does have a lot of good information on it.

Many of you have asked about how you can help and we don't really know right now. We came across this on the curesearch site and it does make a lot of sense to us right now:

Ideas for Family and Friends

Family members and friends often feel concern and compassion for a child with cancer and their family, but are uncertain about how best to reach out and help. A vague offer of “Call me if you need anything” may not be very useful because it requires that the overwhelmed parents consider their needs and articulate them. Parents need a lot of support, but in these situations they simply may not have the time or energy to call. The best support can be a concrete offer for a job or service. When possible, it may be useful to coordinate a group of helpers, so that tasks can be divided and the family’s needs may be covered. There are lots of ways to be truly helpful.

The site goes on to provide lots of really helpful things. You can go directly to this part of the site by cutting and pasting the following into your browser (it seemed too long to include here):

http://tinyurl.com/acqgx

Monday Afternoon - Good News (or at least something positive in what seems like a sea of negatives)

We just received a phone call from the Doctor's office. She had the scan results from Friday's CT and Bone Scans. They show that the tumor has NOT spread beyond the head and neck. This is absolutely GREAT news and the start of a miraculous showing! It truly was NOT what we expected.

We are still waiting on results of the biopsy for an official diagnosis however the Doctor has enough information now to start planning therapy. We are scheduled for a PET Scan on Wednesday- Cut and paste http://www.radiologyinfo.org/content/petomography.htm into your browser for more info.

In addition the Doctor has requested surgery time as soon as possible to put in a central line (a permanent access IV line sewn into a main vein) and to harvest bone marrow. Assuming the bioposy results come back consistent with the "preliminary results" that the Doctor got today, she will want to start her planned therapy immediately.

PLEASE continue to pray for a miracle. If it is in God's Will, this CAN have some positive outcomes!

Monday Morning

It is now 10:45 am on Monday morning and we don't know anything new. Waiting for results and to be told what to do next is the most difficult thing in the world.

We had a tough time when Rebekah came home on Saturday. She continued to bleed A LOT from the surgery site (inside her mouth by her left lower wisdom tooth). They went from the "inside out" to take parts of the tumor around her jaw bone and the muscle. It took lots of ice packs and gauze to keep the bleeding under control. When she was calm, which thankfully was most of the time, she would be okay. She spent most of Saturday afternoon on Mom's lap. She went to bed about 9pm as a very tired, worn out little girl. She ate/drank pretty much nothing on Saturday.

At 3am Sunday she woke up crying and wanted to drink. She drank 2 sippy cups of milk and wanted more. She got more water and it took about 1/2 hour of consoling to get her back to bed.

Sunday was pretty uneventful. The picture on her "profile" was taken Sunday morning. Compare this to the Easter picture on our family website and you can see what is happening to the side of her face.

She was getting close to being back to her playful little self but it is obvious that things are dragging on with her. She liked the company she got, especially the cute little "bekah bear" that her friend Emma made for her at build-a-bear (she slept with him in her arms Sunday night). Sunday she drank almost a 1/2 gallon of milk but did not eat much until Sunday evening when Uncle Charlie made some really great cookies (thank you to Daryl and Ginger and kids for the cookie dough!). Rebekah could not get enough and we let her have all she wanted!

This morning she is up and doing okay. She is pretty tired but doesnt know that much is wrong. Mom and Dad, on the other hand, are on pins and needles waiting for results and directions. Again, waiting seems to be the hardest part.

PLEASE PLEASE PLEASE continue your prayers for all of us. We desire a miracle.

Saturday April 16, 2005

Ok - the first update post on the blog - and a little bit of history.

This all started about a month ago shortly after Rebekah fell. A small bump appeared just outside of her left eye. After a week or so the doctor said it was a bruise (hematoma) and would go away. It didn't.

On Monday, April 11th, her teachers said they were concerned about the increase in the size. When she came home from school it was definately larger and her eye was starting to be distorted. We took her to the doctor that day and he scheduled a CT Scan for the next day.

On Tuesday, April 12th we went to the hospital for a CT Scan. The result was a tumor of pretty large size around her face and neck.

Wed - more tests and doctors. Thur - more doctors. Fri - more tests. Today (Saturday) - biopsy. So far Rebekah has had 3 General Anesthesias in 5 days. She now starts crying when we approach the hospital.

So far we have no results back and we won't have any diagnosis until next week some time. We are, however, extremely concerned and absolutely require prayer.

Welcome

First of all, GREAT THANKS to Robyn and Jason Rogers for getting this set up for Rebekah.

This blog is where we will try and keep updated information about Rebekah and where you, our family and friends, can come and see how things are going with Rebekah. (Hit your "refresh" button each time you come back.

Please feel free to leave comments (anyone can see them) and send us Rebekah specific email at rebekah@attorneyadams.com We might not be able to get back to you, but things will get read.

And, please pray, it is what we need most of all.

-Scott, Frances, Rebekah and Sarah