Sunday afternoon we were released from Children's. We hope for good! Anna is on insulin as we suspected, a long acting dose given each night, and a carb corrector, which means we have to count carbs and do the math to find out how many units of insulin we must give. Anna is doing well though she gets frustrated with the whole process especially when she is hungry! Our prayer is that her levels will get back to normal as her prednisone is almost done. At this point, we are looking forward to a very busy week next week as day 80 approaches (Tuesday!). Monday she still has her normal appointments with a couple of extras such as the podiatrist and a dental exam. Then on Tuesday she will have a bunch of tests, including another bone marrow aspiration and skin biopsy. After Tuesday, we will have appointments with the green team to go over the results and to discuss the plan for the future. As long as everything goes well, Anna will have her Hickman line removed on August 19!!!!! We also will have a class to take on what to expect for the next year once we move back to Bremerton.
At our last appointment, the nurse was talking about transferring Anna's information over to Dr. Irwin in Tacoma. Wow! Are we really on the tail end of Seattle?!!! Seems impossible and yet it is so close I can almost taste it!! Craig and the boys are in the process of getting our Bremerton house ready for us to move back in. We are very excited! Already, we have started bringing things back that we aren't using here.
This time has been quite educational and life altering for all of us! The family has endured and we praise God for His strength in our lives! Though we are still very human and have our moments of emotional weariness, He has proven faithful through it all. I think our family bond will be even tighter after all of this, though it was tight before. Hopefully, our relationship with Christ will also be stronger than ever before!!! The word "cancer" still brings a startling jolt to my heart, and it seems crazy to think we've been down that road, are still traveling down it. But it also brings an awareness I've never known, an urgency to pray for those traveling down the same path. A sense of oneness with those who have done this in the past, and hopefully, an ability to minister to others that have yet to go there. This brings to mind a very precious portion of Scripture. I Corinthians 1:3-7 says, "Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God. For as the sufferings of Christ abound in us, so our consolation also aboundeth by Christ. And whether we be afflicted, it is for your consolation and salvation, which is effectual in the enduring of the same sufferings which we also suffer: or whether we be comforted, it is for your consolation and salvation. And our hope of you is stedfast, knowing, that as ye are partakers of the sufferings, so shall ye be also of the consolation." What a beautiful text! Knowing we are at times allowed to suffer affliction so that we may be able to comfort others like no other could! And at the same time, we too, were comforted by those who had been there before us! God surrounded us with a great mixture of believers to minister to us and unbelievers that we might witness the Love of Christ to! We came here with the thought that we were only on a mission to see non-believers in a place of no hope and to share the hope that lies within us, but God used this as a time to also show His care for us in sending us believers who would minister to our needs as well! We have definitely felt the Love of God like no other time in our lives! I am thankful for this opportunity that He has allowed us to get through to draw us closer to His side! You truly can not know the sweetness of life without also experiencing the bitterness of it!
Thursday Anna had her normal blood draw/lab work at SCCA, but no other appointments with the green team. Later in the day, we got a call from the P.A. that Anna's blood sugar was high and we would need to go in on Friday so Anna could learn to test her own blood sugar. Okay, no problem! We know that high blood sugar is a result of the Prednisone that Anna is on as well as the Tacrolimus. Friday we went in for what we thought would be a quick little class on taking blood sugar. This would be easy as I have had to do this for my last two pregnancies. After the discussion, the nurse had Anna test her blood for a practice run. Her blood sugar was really high! It was so high they decided to wait a few minutes and try it again. Still, just four points less than the first time.....way too high. We then had to head down for more labs and we were told that the P.A. would look into a plan of action for treatment. When we got home, Craig had some news for us......Anna was to be admitted immediately at Children's. This was heartbreaking! We knew she was going to have to be on insulin, but didn't ever think she would have to go back to the hospital!!!! Thankfully, Anna's labs all proved that she does not have acidic blood which would be really bad. We caught it just in time! So, a couple of days in the hospital to monitor her blood sugar and insulin intake, a few classes on how to do all of it at home, and we should get to go home tomorrow. Another little bump in the road, but this too has not been a surprise to our Heavenly Father! Just another opportunity to give Him the praise for everything in our lives! Thank you all for your prayers! Please pray that Anna's blood sugar will go back to normal with her prednisone taper! She has a little over two weeks left on it and we are hopeful that it will end her need of insulin! To God be the glory!
Today is day +60 post transplant! Sooooo.....what's going on right now? Well, for one thing, Anna no longer needs her fluids via her Hickman line! Each night we had to hook her up to a small pump that gave her magnesium and fluids. This took about two and a half hours to administer, and while not much of a big deal, could be a bit annoying and cumbersome. Last night we sent the pump back! Now we just have to remember to flush both of her lines each day. We continue to decrease her Prednisone levels every few days. We now only have one appointment with the team of doctors a week, with two blood draws (Mondays and Thursdays). In general, Anna is still feeling a bit crummy but better than past days. Her spirit is still positive and focused on the things of the Lord, though there are days of discouragement. Human feelings that sometimes get in the way of the main focus. Anna is maintaining her physical fitness with mild exercises that have been given the thumbs up for a slight increase.
These days are days of anticipation. Just 20 days until her extensive testing to see just where she is at physically, and just 40 days until day +100! We are well on our way to going home to Bremerton, though we keep in the back of our mind that things still could change quickly. It's hard to balance the positives and negatives of the situation at times. Thankfully, while trying to be realistic and extremely careful with Anna, the attention is mostly on our home going. Being in Bremerton doesn't make life normal yet, but it's home.
The other day, two representatives from Make-a-Wish foundation, came to our home to meet our family, bringing gifts to our children and paper work for Craig and I to sign. Anna was approved a few weeks ago for this program to which she gets to make a wish for something big....a chance of a lifetime.....something just for her. The categories to choose from include: "I would like to be...", "I would like to meet....", "I would like to have....", and "I would like to go...."
This has been very hard for her to wrap her mind around! She is leaning toward a trip somewhere with the family. They pay the expenses for everyone in the family and encourage the "wish child" to choose something that their family would not be able to do otherwise. It is because of very generous people and companies that donate to this foundation that they can do this. It is very humbling and out of character for Anna to be able to choose something for herself that it has made the decision making very difficult! She asks us for advice to which we reply, "this is YOUR wish, YOU have to choose, not us!" It truly is a big decision and I know she will enjoy whatever she does choose! If it is a trip, we will have to wait a year before we are cleared to go as her immune system should be back to a more normal state by then.
We are nearing the end of this time here in Seattle....did that sound too anxious? In preparation, we are doing a major clean up of the Bremerton home and starting to bring stuff back from the Seattle house. Much needs to be accomplished so we thought it better to do it now before we have 13 bodies living there and in the way! Things are going quite well and we are ever thankful that God has allowed such progress with Anna's health. He has proven His care over and over in concern with Anna, and with others that we have asked prayer for! Praise the Lord that little "Iron Will" is doing very well and may get to come home fairly soon, also, praise the Lord for the news on Lynsie. Lynsie is the 23 year old young lady I told you about while we were at the hospital. She was Anna's neighbor and had sent Anna a balloon as an encouragement. Since then, they sent each other notes and then greeted each other as time and health permitted. In the past few days, Lynsie has been featured in the health section of Foxnews.com for the experimental T-cell treatment that seems to have been successful in getting rid of her cancer! Again, we rejoice in answered prayer! Thank you all for your continued love, care, support, and especially prayers during this time! May you all be extra blessed today!
I am rejoicing along with others over answered prayer! Thank you all who prayed for our little Iron Will! The surgery was a success and he is recovering. Please continue to pray for his recovery time as this was such a major surgery and he is so little. What a precious and beautif little guy he is!!! Again, thank you! And Thank you Jesus!!!!
We have an urgent and very special prayer request. Our dear friends, the Heinz family, have a very precious baby boy, born March 7, 2013, with Down Syndrome, who is, at this very moment, undergoing open heart surgery. Please pray that The Lord will guide the surgeon's hands and that the surgery will be successful. Pray for the great peace of God to encompass his Daddy and Mommy as well as his 9 brothers and sisters. We know that little Will (William Tyndale Heinz) is completely in God's hands! Thank you for committing to pray for this sweet baby boy...Iron Will...as my husband affectionately calls him!
(The picture above is the meds I put together every Monday and Thursday as doses change on those days, for Anna to take each and every day....just a few)
A very over due update on Anna. Today is day +52....over half way to day +100!!! And how is our dear one doing??? Well, upon getting the results of her bone marrow aspiration, we were informed that she still has cancer cells, for which all were disappointed. The percentage (0.03% or so) is small though and not much to be concerned about at this time. In six months if she still has cancer, than we will discuss more treatment options. We trust that her new cells are fighting the cancer cells and that the GVHD is a good sign of this happening. The cancer is not visible with the regular blood samples taken, only through the extensive tests with the actual bone marrow. All of Anna's numbers are fabulous! She is doing quite well. Sunday, Anna had a slight fever that we monitored closely, and she did not feel well. By the end of the day her temp was normal. During Monday's appointment, the doctor said that this was probably a GVHD flair up due to the tapering of her prednisone and that it should ease up in a couple of days. She still doesn't feel too well, but her temp is stable. At this point in time, Anna has two days a week that she has to go to SCCA for blood draws and appointments.
The jumping jack competition......
As you may remember, Anna had a jumping jack competition planned with one of the PAs (physician's assistant), Darrin. Darrin was one of our favorites with his good nature and fun spirit. He had a bone marrow transplant eleven years ago so he totally understands his patients' needs physically and emotionally. Well, we found out that he had had to have a double hip replacement due to the high dose prednisone for extended period of time. We asked him if he should even be doing a j.j. competition. He said, "no, probably not, but I'll still do it!" Unfortunately, Anna is under strict orders to NOT jog, or do jumping jacks. Only light exercise, also due to the prednisone and how hard it is on joints and bones. So no competition ever took place...don't worry, we all know who would have won!!! ;-) Go Anna!
We are very much enjoying having Anna in our home and can not wait to really get her HOME... In Bremerton! Day +80 will be a huge day of extreme tests much like she had prior to being admitted to Children's for the transplant. After day 80 we will have a better idea of when we might get to go back to Bremerton. City life has it's perks, but country life has soooo many more! Sunday I sat in our van, windows open, baby sleeping.....the peaceful sound of the breeze was something I hadn't realized I had missed so much! You don't realize how quiet Bremerton is until you've lived in Seattle. Sorry, folks, I'm still a country girl! You might be able to take the girl out of the country, but you can never take the country out of the girl! I miss home very much! I miss being able to have my windows open for a breeze and not have cigarette smoke to smell! Oh, there is much to be thankful for here... don't get me wrong! I am very blessed to have had this place to live in! But I'm ready to get back to life at home again. I am thankful that God has allowed us to stay together throughout this ordeal! It also makes me more thankful for things at home that I may have become unthankful for before. Well, I hope you all have a fantastic day today! Thank you for your continued prayers! God has been faithful and good!
Congratulations, my sweet daughter, on your accomplishment of hard work and diligence! I am so proud of you! You have done a great job throughout the years of education and I'm thankful you have the heart that desires to continue learning, for life is a constant field to learn from. You love books, this will carry you far! I trust that you will one day pass this love of reading on to your own children.
CONGRATULATIONS, GRADUATES...CONGRATULATIONS, NAOMI!!!!
we've cried, we've laughed, we've grown. The many trials have brought us closer together, the many joys have brought bliss. Nineteen years have also brought 12 children as fruit of our love. We've had so many amazing opportunities and blessings. I look forward to seeing what more God has for us in the many years ahead!
I am a very blessed woman.......