Waiting Is No Fun

We do not have a Care Conference set up, yet. We are getting frustrated. Clinic has been really busy with new patients and one of the doctors on vacation. Today has been a week since we first asked for the Care Conference.

Rebekah’s classes started up yesterday for the year. She did really well with staying and Mommy leaving. Sarah wasn’t so fond of leaving (she really enjoys playing for a few minutes when she can). If Sarah were a year older, she could stay as a "typical peer", but she would have to be three and she’s not quite 2.

We have asked for some testing to see where Rebekah’s skills are at after her chemo treatments (to get a baseline) and the teacher and therapists are planning to do much of that this week. It will be good to see where she is at, although I know it will be somewhat difficult to hear. It is never fun to know how far behind your child is.

Our friend Genia, who has been with us for three weeks, is heading home today. It is sad to see her go. She has been a great help and the girls have loved having her around. (Mommy and Daddy have enjoyed having her here as well and she has been great!) This morning, Genia and Daddy were out the door about 6:30 to get to the airport. The girls were just waking up, so they got to say "bye bye" to Genia. They made it very clear that they didn’t want her to go. After Daddy and Genia left, the girls kept asking for Genia and didn’t want Mommy’s help.

Grandma M and Grandma A are back to school this week in preparation for the new school year. It has been great to have them available to help more, so Mommy could make appointments and not have to take both girls or just be able to get more done around the house.

Grandpa and Grandma C have been bringing out fresh veggies once a week or so for the last few weeks. It has been great! Last night’s dinner was fresh corn, tomatoes, cucumbers, fruit salad and boy was it delicious. Genia really enjoyed the fresh fruits and vegetables.

This afternoon, I’m taking Rebekah to the ENT. One of her scans, I think the MRI, showed a little bit of a sinus infection and the last few days it has been evident that she is having issues. I’m going to guess that she’ll be put on an antibiotic for it, but we’ll have to wait and see. I suspect that infections like this will be an ongoing issue for her.

Thanks so much for all the prayers and comments. It is a great encouragement to us. We are not totally freaking out at this point, but we are having trouble planning very far ahead. We just don’t like being in limbo. It’s not a fun place to be.

Not Great News - But Not Horrible Either

Well, we received the call from the doctor's office earlier this morning. It was not the great "everything disappeared overnight" news that we have been praying for, but not exactly bad either.

The tumor board reviewed the scans and apparently had a more detailed report from some more radiologists. Yes, there are areas of activity throughout different places in her body. But there is some rating system (in numbers) that assigns how much activity. What we had received earlier was just "activity." The numbers tell how active the activity is and the numbers are apparently not that high. What this means is that THEY are not that worried and want another set of scans again in a month.

What it does not do is remove a lot of concern on our part. There is still some activity. We don't know what, we don't know why, and it seems that maybe we are not going to for short while. We know we will be able to, but are not sure exactly how we are going to cope with this "unknown" for another month. Sometimes it seems like "nothing" or "everything" is better than "just a little bit let's wait and see".

We don't know what scans they are going to want in a month and we have asked for a "care conference" where WE sit down with all of the docs and case manager so we can have a little bit more of a better understanding of what has been done, what is going to be done, and what OTHER options there are.

Monday Morning

Here we are Monday morning, still waiting. We will not know anything more until tomorrow morning at the earliest and more likely end of the day tomorrow.

This weekend was a bit of a "Retreat." Genia, a friend and angel from Alaska who is staying with us for a few weeks took both Rebekah and Sarah and headed off to Grandma A's house Saturday afternoon and they did not come back until Sunday evening. They all got to play, go shopping, go to Church and go for a country drive all with Grandma and Genia. Mommy and daddy got to stay home and have a few moments without kiddos. If memory is correct that has only happened one other time in the last 18 months. Unfortunately, mommy and daddy got a lot of work done. But it was still a delightful break, especially for mommy, and more importantly, the girls seemed to have some fun.

It is hard to put our thoughts into words. We want to be faithful and expect the best tomorrow but that is not where our hearts are right now. We have a very strong base belief that whatever happens we will get through it just like we have the last few years. BUT, we are not very positive about it. More prayers and thoughts for a miraculous "nothing" from the docs tomorrow please.

A Call From The Doctor...

...and not exactly what we wanted to hear. The doctor prefaced the call with "this does not make sense" to her and told us her first thoughts were "this is going to make for a long weekend for this family". The PET scan shows a lot of activity - and activity is bad and means "these could be cancerous cells". It shows "activity" in her jaw, her spine, her lungs and her pelvis (and somewhere else I think but I can't remember).

The doctor was basically saying that this did not make sense to her because it did not fit with what they "expected" to see based on everything else that was going on including "how good Rebekah looks". The doctor wants to wait until they tumor board meets on Tuesday and review this with them while at the same time reviewing her MRI last week and her past scans. She was trying to lead us to believe that one or two areas would be concern but this many positives makes her think something is wrong with the test. We would sure like to think so but are not that confident right now. Our minds are saying "ya that's great to say but we are seeing a falacy in that logic and that falacy is that all of the areas that they mentioned are areas that ewings sarcoma is known to attack." We would like to be wrong.

It is time for some major prayer between now and Tuesday. God is very capable of making it so that any follow up scan that we end up having to do is completely clear, all it takes is faith; have some with us.

But just as important, the doctor also told us that they had three more cancer diagnosis in clinic this week. While our weekend is going to be long for us, it is going to seem like eternity for these newly diagnosed families who don't know what their future holds in store for them and their kiddos. Please pray for them all.

Post Scans - Nothing New - Yet

This is the frustrating period. Scans have been done and now we are waiting on results. In fact it is even more frustrating because we have the scans in our hot little hands - we have learned not to leave any scan facility that is different than our "home" hospital without them in hand! They are on disc and we looked at them on the computer but it really is a foreign language that means nothing to us.

Yesterday, scan day, was somewhat interesting. Just as we were about to leave (literally walking out the door) we got a phone call from the hospital saying that they don't have the radioactive juice that has to be in Rebekah's body. It turns out the facility that provides it had a power outage and could not supply it. They ended up having to get a courier to deliver it from Seattle 3-4 hours away. Needless to say things started running late.

We did finally get to the hospital about 1 1/2 later than we were originally supposed to and things were still running slow. We had a really really awesome nurse named Rebecca. She was very cognizant that we knew what was going on with our Rebekah and was very willing to adapt the way they "normally did things" to a way that worked best for Rebekah. When we complimented her on it later she said "parent's know best and I listen to them right up until they prove to me that they don't know best..." Smart gal. We bet she ends up working for another hospital in town soon - and we hope it is ours!

The anesthesiologist came in and talked with us for a while. He asked Rebekah to open her mouth and when she would not/could not totally he decided he really wanted to intubate her. Now she has had close to 70 general anesthetics and NEVER needed intubated before (or at least never got it even though she did need it once or twice). This doc was being overly cautious and deciding that he did not want to have to try and intubate her IF something bad happend as a result of the anesthetic as he would not be in his own environment but rather in the radiology lab - he just didn't feel comfortable with it. As we were very much putting our daughter's life in his hands there was absolutely no argument from us - she was HIS patient and he needed to be comfortable.

After some "discussion" he did agree to let daddy go into the operating room with him and be there while Rebekah was put out and the intubation performed. Daddy had explained that this little girl ALWAYS had mommy or daddy hold her while she went to sleep and we ALWAYS were there when she woke up. It took some work, some checking with powers-that-be and some explaining to him that was OUR rules but it happened. Daddy was put in scrubbs including the hair net and booties and off daddy and Rebekah went to the operating room.

The scan itself took about an hour and she came out of the anesthesia about an hour after that. We finally got home about 6pm. Rebekah was mostly out of it until just about home and then she woke up, startled, and started asking to eat. She ate lots of "Kicks" cereal both on the way home and after we got home. After about an hour or so at home she seemed pretty much back to normal.

We don't know for sure when we will get results. The tumor board meets next Tuesday so it is possible it will not be until after that. More waiting. More resting in the Lord. Thank you all for your prayers and upkeep - you are again awesome in our times of need.

A Non-Update Update

Sorry, don't have much for you. PET Scan is tomorrow at noon and we are not even sure how long it will take to get a review after that. This waiting is always for the birds. We are, however, trusting in the MRI scan being "a mistake" and there being nothing there. That is definately how God has worked the last year and a half. It is really amazing to think back on what was happening a year ago - we were at our worst. And now we are at our best. Praise God.

Trying To Have A "Normal" Weekend

Thank you ALL so much for your prayers and concerns. Obviously this is weighing heavy on us but we have taken to the following thought: This is clearly not good news. We don't know yet if it is bad news - and that is a comforting factor.

We are at a church annual camp down on the beach with the church that Daddy and Mommy were married in and we have remained good friends with many of the people even though we don't regularly attend there. WE are enjoying the weekend regardless of what next week might hold.

Next Wednesday we will go in for a PET scan to tell us more than the MRI did last week. Then we will no more.

Prayers requested for a "mistake" on the last MRI.

Sorry for the Absence

As many of you have asked privately and suggested, yes there have been a few issues recently. But most of all is one that just kind of hit me like a big brick.

We had scans again last week (Tuesday and Friday). Mommy and Rebekah are at clinic right now getting some of the readings. There is something showing in the field where she received radiation but not in the area of the original tumor. That is odd and right now they can't exactly explain it nor do they have an idea what it is. Secondary tumors from the radiation usually occur 8-10 years out... They are trying to tell Mommy that we will "just keep an eye on it and look again in 3 months." Obviously we are not at all happy with that answer and are pushing hard to get a better answer even if that requires more aggressive testing right now.

Update 7:00pm PST. Mommy is home and apparently it did not take much pushing to have the doctors start to work on scheduling a PET scan that may be more definitive. We actually were kind of hoping they would resist a little harder. It's hard to say but their willingness to go right there might in itself be bad news. What we are trying to focus on right now is "It is not good news, but we don't know for sure if its bad news until we get more news."

Yet again the other problems in the past 10 days or so seem a little mild right now. Prayers please.