It's Here!!!!!

This morning, the UPS truck pulled up to our home and delivered Anna's new meds! She will begin taking it today. Many people have asked me how they should pray. Well, the answer is, I really don't know. Just pray that the Lord's will be done. It would be nice to have Anna feeling better and more "herself" for a few months, but if not, then I pray that the transplant would be expedited so as to get this lovely young lady back to health. =) Anna's blood work was perfect yesterday! We rejoice. Anna will have an appointment next Wednesday and then she will get to take a week off. We will be heading to Oregon for a much needed time away. Every other year we have the opportunity to stay, for free, at the Cannon Beach Conference Center with their "pastor's get away special". This has been a tradition that we have loved and look forward to every other year. We always enjoy our walks to the beach, yes even in February! It is amazing to me that the Lord has allowed us to have beautiful weather every time we go! We love going to Haystack Rock, getting candy from the candy shop, and eating Mo's clam chowder while looking out at the Mighty Pacific Ocean! Most of all, we love spending time together, being refreshed from the day to day stuff that tends to bog us down.

Looking from the Astor Column toward the mouth of the Columbia River

A view looking out at the place I grew up

After our time in Cannon Beach, we plan to take a few days to see family in Astoria. Please pray that all will be healthy and that our time would be the recharge that we need! We will be getting back in time for Anna's appointment and then on to couples' retreat. I am very excited about the coming weeks!

A Little Weary.....

A week ago Friday, Craig and I took Naomi out for her very belated 18th birthday dinner. We went to our favorite special place, La Fermata. Craig had 18 red roses waiting at our table for her and we enjoyed our evening immensely. We are so blessed by this beautiful and godly young woman. 

Our beautiful Naomi with her 18 roses

That night........Selah woke up sick. The next morning, I too was sick. Several of us came down with a stomach virus that put us out of commission for about four days. I am thankful not everyone got it. I was worried because we had a very busy week ahead of us. This is why I have not been on my computer at all for over a week. By Tuesday, we were all back amongst the living. Tuesday evening we had the privilege to host our beloved missionary and friend, Michael Wonser, in our home. This was our mission's conference week.

A sick Selah

Wednesday, Anna had her weekly check up in Tacoma. We didn't get her blood counts as they didn't take her labs until late in the appointment. Dr. I was able to speak with a CML expert who told him that it would be okay for Anna to be off of cancer meds for up to one month. This was a relief as we had still not heard from the insurance company concerning her new meds. We also were told that only 1% of CML patients a year experience adverse effects from the cancer drugs. We always knew our Anna was special! =) Saturday, I received a letter from Regence overturning their original decision to reject the request for the new medicine, Dasatinib. We will be getting this soon! Praise the Lord! Craig asked Dr. I what a reasonable time frame to transplant would be if she reacts badly to this one, and he said probably about six weeks. As soon as we get the meds, we will have about one to two weeks before we will know for sure if we should push forward. We are prepared for whatever the Lord desires.

Anna's beautiful smile

Wednesday evening, we had the opportunity to enjoy the teachings of another dear missionary and friend, Bro. Tom Tracht as well as Bro. Wonser in our Bible study classes. Thursday, we took the full day to spend time with these dear friends. We walked on to the ferry and then on over to the Aquarium. The children had so much fun being together and looking at all of the sea creatures on display. It was really neat as we got to be there during feeding time! On our way back, we all got a giant cookie and loaded back onto the ferry. At home, we ate dinner together and the men went over to Craig's study where they were joined by others for school of ministry. The children and I enjoyed this extra bit with Mrs. Tracht and her children. Friday evening was a wonderful beginning to our conference. Saturday started at 10 a.m. and went until 3 p.m., with a stop for lunch of soup and sandwiches. Sunday was the grand finale! All weekend we were blessed with challenges from the Word of God and our hearts were stirred by amazing testimonies from these heroes of the faith! Sunday evening we had our international dinner. The sanctuary was transformed into a banquet room, tables decked out with beautifully crafted cards with pictures of individual missionary families that we support on them. The food was amazing! Everyone went out of their way to make this a wonderful feast! While this was a busy weekend, I am sad it is over. Sad at the fact that it will be another FOUR years before we see the beautiful Tracht family again. Blessed though that we will get to see the entire Wonser family this May! And blessed that we had this moment in time.

Julia and Trenton having fun at the Aquarium

By the end of the evening, I sought out my very tired children to say our tearful goodbyes and to load up into the van. As I was doing this, I was approached and told that my son, Samuel, needed me. He was sitting in the rocking chair of the nursery, white as a sheet. His eyes were dilated and he was burning up. He said he almost passed out on his way up the hill as he was running a quick errand, and then again as he came back down. He was feeling dizzy and his hands were freezing cold, he told me that his bones were aching and his spine and neck hurt with intensity. His heart was racing. I worried as I heard this~ meningitis was in my thoughts. I ran up and got our "resident" nurse, Susan. I told her what was going on and asked her opinion. I didn't want to over react or under react in my thoughts or actions. But the first thing she said was the very thing I had thought. I then ran and got my husband from a meeting. He jumped immediately into action and took Samuel to the ER. It is always concerning to me when you get brought back right away and he did. His heart rate was 104 and blood pressure was high. He had a fever of 108! I asked Sam this morning what the hospital staff said about his temp, and he told me that he knew they were really stressed about it but trying very hard to not let him know that things looked bad.....he knew. (Okay, my hubby said his temp was actually 103, this explains to me why he was released! LOL! I think Sam was a bit out of it) They gave him something for the pain and Tyelonol for his fever. It did work it's way down eventually. They did a spinal tap as they too thought meningitis. His fluids were clear! Praise the Lord! And the test results were negative for meningitis, again, praise the Lord! Around three this morning, Craig, Bro. Wonser, and Samuel were headed down the hall to come home. The doctor was passing through and took a look at Sam, then brought a wheel chair to him and brought him back to his room to observe him a bit longer. Forty-five minutes later, they were headed home. Samuel is under orders to stay in bed this week, resting and drinking plenty of fluids. His fever is gone, but he is still in pain and very worn out.  We again praise the Lord for doctors and nurses and their care for our child. Please pray he makes a full recovery soon.

Samuel

"It is good for me that I have been afflicted; that I might learn thy statutes. The law of thy mouth is better unto me than thousands of gold and silver. Thy hands have made me and fashioned me: give me understanding, that I may learn thy commandments. They that fear thee will be glad when they see me; because I have hoped in thy word. I know, O Lord, that thy judgements are right, and that thou in faithfulness hast afflicted me. Let, I pray thee, thy merciful kindness be for my comfort, according to thy word unto thy servant. Let thy tender mercies come unto me, that I may live: for thy law is my delight." Psalm 119:71-77

Just a Quick Note on Anna

We are praising the Lord today as we have all normal test results!!! Anna's jaundice has cleared up and her liver enzymes are on there way down! The doctor is having her take another week off of her cancer meds as her blood counts are all normal and we are still waiting for the next drug. He is placing another prescription order for it to see if they will go ahead with it this time. Please pray that the insurance company will not get in the way this time.

Anna's pain level is down significantly though not completely gone. We hope to see improvement in this area the longer she is off of the Gleevec/Tasigna. She is still not feeling well, but that is to be expected. It is our hope that this too will improve in the next week. We will be seen again next week to keep an eye on her white blood cell count to make sure it stays down. Thank you all for your prayers!

A Little Clarification

I spoke with Dr. Irwin today about all of the information so many of you shared. He clarified the fact that, yes, indeed liver problems can arise from use of Gleevec. But, he said that most of those cases are patients that are taking it for another problem that has to do with the stomach. Although there can be very rare reactions in CML patients. He definitely said it's still a possibility, but that it is unlikely as her liver functions had been fine while on the Gleevec (and she has been off of it for over two weeks now). If it is a drug related problem, it would be the Tasigna. That being said, he is looking into several viruses that may be causing this issue. We had more labs done today as well as an extensive ultra sound examining her liver and kidneys. These were done this evening and so we do not have any answers as of yet. We expect to be seeing a liver specialist early in the week, and hope to get some answers tomorrow at the earliest. Thank you all for your love and support in all of this. We greatly appreciate all of the prayers going up on our behalf! We are fully trusting in the Sovereign hand of God!

An Urgent Prayer Request

Please pray for Anna! We got the lab results back on her bilirubin and liver enzymes....they are really bad. Dr. Irwin is baffled at what's going on. He researched her meds to see if this could be a side effect and came up empty. He spoke with a GI doc, and Anna will have an ultra sound of her abdomen tomorrow. She also needs to get more extensive labs done to check for several things including viruses. He is in contact with a doctor at Fred Hutch who is an expert on the meds Anna has been taking and is hoping he will have some answers too. We should know more tomorrow, although some of the tests won't be ready for a couple of days.

This, too, is in God's loving hands! There are of course many concerns, but we will strive to be careful for nothing!!

The Latest on Anna

Anna's new meds are still not in. Tonight she took her last "left over" Gleevec pill (from when she switched over to the Tasigna). Dr. Irwin really didn't want her to have to take the Gleevec anymore, but it looks like she'll be on it until the other meds are approved. I must pick up a month's supply tomorrow.  I just love it when health insurance companies get to decide what's best for your child rather than just trusting your child's doctor! I am thankful for a husband who knows how to handle it! And I'm thankful that God is in control!

Because we have to go in tomorrow to pick up the Gleevec, Dr. I said we could just wait and see him next week. They let us get her labs done at our local physician's office. Since her eyes have been a bit yellow, they are testing her bilirubin as well as her liver enzymes. We should hear back from those tests in a couple of days.

I am thankful for God's grace that is sustaining our sweet Anna in this time of pain. I am thankful for family and friends as well as complete strangers that are lifting up prayers on her behalf!

Rewinding the Clock a bit

We are rewinding to October 6, 2012 as I attempt to "catch up" a bit on my posts!

What do you get when you cross tea, dainty treats, presents, games, and little girls? A birthday party! Here are some pictures of Lydia's 7th birthday party. She chose to invite a small group of friends and have a tea party. It was a bunch of fun!

The table, all decked out

lemon cake balls

strawberry cake balls

Belgian cookies

fresh fruit

scones with jam and butter

Let the party begin!

Playing "pin the handle on the teacup"

So much fun!

The birthday girl!

So many presents!

The Latest on Anna-Renee

Friends at the Pt. Defiance Zoolights

 Anna started her new medicine, Tansigna (nilotinib), on Christmas morning. The Gleevec was giving her debilitating side effects. Anna's body was in much pain and the doctor knew this wasn't going to be a good thing to endure for six months. So, with hope, he put her on the Tansigna. Well, the side effects were just as bad for her, along with the pain, she was experiencing a rash and itching all over as well as dizziness and terrible abdominal pain. Though these drugs are keeping her blood counts normal, the stuff that comes along with it is just not worth it. We are all concerned that they are wearing her down so she will have no strength left when it comes time for transplant. Dr. Irwin has decided to try something that he's not sure if anyone has tried before, and that is trying a third drug. He said that we should know pretty quickly if it is helping her feel better as well as combat the cancer. We should be getting it within a few days and she will begin taking it immediately. If however, this does NOT improve her quality of life, he will be calling the transplant team and scheduling the transplant. This could all be taking place within the next month or two. We pray that God will continue to make our path clear throughout this journey.

My mother's heart is torn. After the whirlwind of the diagnosis and expecting to go into transplant right away, the brakes were slammed and we all were thrown for a loop as we were told by the docs at SCCA that we would be waiting until late spring/early summer. Of course, we knew that if the meds didn't work that we'd go straight to transplant, but when her blood counts went to normal, we all settled into life again. Plans were made for the upcoming months. Things we were wanting to do first. I am thankful though that our doctor has wisdom to know that wearing Anna down before the transplant isn't the preferred way and that we'd rather move forward and get Anna better. He told Anna that this was not supposed to be the game plan. The plan was for the Gleevec to work and that she would be feeling better by Christmas. We were definitely looking forward to her having energy again and being her "old self" for a while. Well, that was not to be. We will see if this new drug will do what the other two did not....3rd times the charm, right? ;-) But if this too gives her debilitating side effects, we are prepared for the next step. We know that God's plan is best and He will guide our steps. We will praise Him no matter what.

Thank you all for your continued support and prayers! Please continue to pray that she will gain weight...it was down and she really needs about 18 pounds put back on! At this point, we are ready for the inevitable and so what ever that entails in the next month(s) so be it. Just pray for strength as well as the souls we are to encounter on this path. Pray their hearts will be ready for the gospel!!!

Many blessings to you all!

Happy New Year!

Happy New Year from our home to yours! I am way behind in blog posts and I plan on doing some major catching up now that the holidays are over and we can all take a collective sigh of (relief?). I hope you all had a wonderful Christmas and New Year's celebrations! We truly enjoyed our time spent with our family at home. Though the time was fun, we are happily returning to our "normal" daily schedule. School is back in session, decorations are put away, the goodies are (almost) gone, and life is good! So, stay tuned for more frequent updates right here!