Technical Difficulties

Sorry for the lack in post updates! We are currently having technical difficulties with our Internet and will be having someone come by tomorrow to see what is wrong. Thank you for your patience and I hope to post a regular post soon!!!

Anna Needs a Little Help Folks....

Anna is in quite a quandary! She needs YOUR help choosing the "perfect" wig! She really LOVES the patriotic theme, but then again, maybe a nice dread lock would be better? Hmmm... decisions, decisions...

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Okay, as you may have guessed, that was all in fun, here is the one Anna chose. Daddy surprised her on Friday with an appointment at the SCCA boutique, Shine, to be fitted for a wig! This wig in particular put a "shine" in her eyes each time she put it on! She had the opportunity to order a wig, but trying them on is much more helpful when deciding on style, and the color is easier to decide on when you can see it in person. Also, the fit was easier. Anyway, we all know she doesn't need a wig to be beautiful, but it is nice when you don't want to be "noticed" while you're out and about.

The chosen one...front

.....And back

Home Sweet Home

 Home sweet home....what can I say? There really is no place like home, especially when you've been in a hospital for a month and a half. Saturday Anna was given a four hour pass to go home. The day was sunny and the air a bit stuffy, but for Anna it was nectar to her lungs!! To the right you'll see Anna taking her first step into the fresh air since May!! She was so excited to get home and be with the family! We, too, were excited to get to have our Anna home for a bit of time! Monday, Anna was given another four hour pass and it just so happened that we had already made plans for our dear friends, the Smith's, to come over for dinner. Anna got to hold her little name's sake for the first time. Isabella ANNA Smith! Little Isabella was born on the day that Anna was admitted at Children's. Being told that her middle name was after Anna-Renee brought tears to all of our eyes!! What a sweet gift!

During rounds on Monday, we were informed that Anna would get to come home.....not on a pass, but actually discharged, on Wednesday instead of Thursday!!! This brought smiles to many faces!

 Tuesday, Craig and I went over to SCCA to take a class on how to use Anna's pump. This will be used each night to administer magnesium through her Hickman line until she is ready to take it orally.

Wednesday came, Anna's numbers were........AMAZING!
ANC: 7,275!!! Her white blood cells: 9.7 (9,700...if you remember way back in October, we had a little lesson in white cell counts. Top of normal range is between 13,000 and 15,000. Anna's were at 75,000 and the very next day were at 95,000)
Red cell count: 3.42, Platelets: 129, and her hematocrit: 30.8 (these all without any red cell transfusions! and her platelets came up on their own without another transfusion before her bone marrow aspiration!)
The doctors, PA's, and nurses are all very pleased with Anna's progress. They have been thrilled at Anna's physical activity that has helped in her recovery. They even told her they'd love it if she could give a motivational speech to all of the patients on exercising through even the toughest of days! As many patients get sick and weak because they just lay there.

 It is amazing at how bitter sweet the day we've been waiting for can be. You come to love those who've been there for you and your family for the past six weeks! You build relationships with them. Patty was our first nurse. We had hoped she could be our "last" nurse, however, she was training another nurse in a different area of expertise. But she came in to give hugs and say goodbye anyway. She is a sweet Christian lady that we very much grew to love!!! We will miss all of the wonderful people at Children's!!

Now it's on to another phase. We had thought Anna would have daily appointments at SCCA, but it turns out, she is scheduled for Mondays and Thursdays.

 Some patients do have daily appointments, when they are reliant on transfusions. Anna is not so she will only have extra appointments if her levels drop and she starts taking a downward turn, of course if she takes a bad enough downward turn, she'll end up back at Children's...we may miss the folks there, but we'd rather not have to go back!! Now we are home. We are finishing up on getting the supplies needed for an immune suppressed patient. Bleach, paper towels, hand sanitizer, all necessary for our new way of life. I didn't take a picture, but the line up of meds was a bit overwhelming as I distributed the pills into containers for the week. Though we were assured by one of the PA's that that amount was really nothing! He should know, he not only treats BMT patients, he was one eleven years ago!

 Before, we were pretty concerned over even the slightest stuffy nose, now we are paranoid over it! We have to be for Anna's sake. She must stay away from sickness. You have a headache? Go to your room and stay completely away from Anna until we are assured you are NOT sick. Those are kind of the sad times for little people as that is the time when they want and need a mommy's snuggle, but at this point, I am unable to give that to them as I need to be healthy for Anna. I am more prone to getting sick as I am with child and I always tend to get sick many times throughout each pregnancy....so far God has protected me from it!

Today is an exciting day. Anna woke up in her own bed, in her own room, surrounded by her own things. No beeping, no nurses waking her to do vitals, just mom getting her up for her clinic appointments. I promised I'd let her sleep in until 9 tomorrow! (That's when most of her meds are due) The excitement of being home is still fresh, though it can at times be overwhelming to go from a somewhat quiet environment to the hustle and bustle of a home with eleven children...all excited that you are home! Hopefully the adjustment time will last only a couple of days. We have to remember that she is still not 100%. In fact she is far from it! Naps are a must, and taking it easy while staying a bit active will be a balancing act! We are on day +33. We have until at least day +90, but expecting to be here until day +100. This will be a long next phase before we get to go back to our Bremerton home. But we are together! We praise our Lord for such answered prayers as we have been seeing! We are so humbled and thankful that He has allowed Anna to do so well throughout this bone marrow transplant process! Please continue to pray that Anna will stay on the path of recovery! That she will only see improvements and that she will baffle the doctors at how well she is doing! So we may give God all of the praise and glory! The hymn, "To God Be the Glory" is being sung in my heart today! I pray that you, too will sing this song and truly mean it even in the midst of trial! May you count your blessings and be truly thankful for even the smallest of things! For you too can be thankful to wake up in your own bed, in your own room, surrounded by your own things, and family that loves you...even if you haven't been in a hospital for six weeks!! To God be the glory, great things He has done!

Day +26 Update

 Anna has had a couple of talented ladies who have made her gorgeous hats! This top one is from Annie M. in Moscow, ID and the Gray hat is from Rachel K. from our church. The scarf was a gift from her daddy for her birthday. Also, notice the dangly earrings....compliments of Mrs. Mandery! The boys came for a visit the other day and we all had a bunch of fun. They have all kinds of neat things for patients and their siblings! Michael rode this contraption around and around! He must've done at least 2 miles!!!

Today is day +26 and Anna does have mild GVHD. The pics of her esophagus showed some red irritation and so she has been started on methyl prednisone and another med, beclomethasone, to help. The prednisone helped boost her already climbing numbers. Yesterday her ANC was 1610 and today it's 3312! They are still hopeful for a possible discharge next Thursday (they won't discharge on a Friday as she will have to be seen in clinic the very next day), but are thinking maybe the following Monday instead. They need to see how she reacts to her new meds and the GVHD. We are getting anxious!

 Yesterday, I had the privilege of taking Naomi out for a girls' day! We wanted to get her some new outfits for her senior pictures. We had a ton of fun, looking, trying things on, making fun of some styles, and being silly! We also enjoyed time getting lunch and just catching up a bit on life together. We were both quite excited to find a beautiful dress with all of the accessories to match... and shoes! I even found some new maternity things! We both felt very spoiled! The day ended all too soon, but we look forward to getting out again soon!

The new outfit minus the jewelry..

The Ups and Downs of it....

Bringing the party to the others

 Here are the pictures I promised you all of Anna's birthday. She started the day out with delivering a bit of cheer to the other patients' rooms. Since she is not allowed to be with the patients in the patient lounge area, she decided to bring a bit of her party to each of them...she brought smiles to the faces of many! Next, the time she anticipated the most....her family walked through her door! Everyone was so excited to get the opportunity to see their Anna! She was lavished with gifts and love, and in turn, she lavished them with a special surprise of party favors! (aka candy galore!) Once the family left, Anna took a long nap. When she woke up, we had another surprise for her! You see, before Anna was ever admitted to the hospital, she had requested coconut cream pie for her birthday. I promised her that even if she couldn't eat it, I'd make sure she had her pie. So I called on the master....Paulie Howe! She makes this amazing triple coconut cream pie!! Yum! Is the only word to describe it! We invited the nurses to partake, and they did very willingly!

The family has arrived!

So happy to see Anna, but also anxious to see what's in the bags!

 Anna's birthday was a very special day filled with fun and laughter. We are all thankful we could spend that time together!

Now for updates on the last few days........

The last I wrote Anna's ANC was just over 600. Sunday her numbers had jumped to 1053. And yesterday she was up to 1196!!! All of her numbers are looking great! I got to spend the day with her and she was quite perky! A relief since she had gotten really sick on Saturday and Sunday! She was still nauseous, but had some energy to burn off nonetheless. Anna walked a whole mile, then jogged four more laps! She also went down to the first floor Starbucks...twice. She is now allowed to be unhooked from her "shadow", or her IV pole, for long periods of time...this is quite refreshing to her! During rounds, the doctors discussed her tummy issues and said that they are pretty sure it is GVHD (graft versus host disease). Anna had some scoping done today to see what's going on and to get biopsies done, we will have the results on Thursday. At that point, she will get started on prednisone and other meds to treat the GVHD, if indeed that's what it is. The team of doctors are all pleased with Anna's counts. They even said they are looking at POSSIBLY discharging her mid to late next week!!!! Of course, we know that could change very quickly, but it still made us super excited! When she is discharged, she will be allowed "home" to our Seattle house. She will then be on outpatient status with SCCA. This will mean daily (sometimes multiple times daily) appointments. But it also means we will all be together...under the SAME roof!!

Reading cards and opening gifts...always fun!

And now for Anna's surprise to her siblings! Candy!

And now to today...Anna had to have a platelet transfusion before the endoscopy. This is not because her platelet numbers were low, but rather because they are still so new and would all rush to heal the tiny little biopsy spots that it would decrease the level; therefore, they wanted to boost her numbers before lowering them with the procedure. Anna's numbers dropped off a bit today, her ANC went down to 753 and her hematocrit to 27, just above the need for a red cell transfusion. We think maybe she over did it a bit yesterday? But how do you tell someone who has been sick, "chained" to an IV pole, and has spent weeks in one room that she simply must go back to bed and rest? Yeah, exactly! I didn't have the heart! We knew she would probably rest a lot today. The doctors were not the least bit concerned over her numbers....I am thankful for that! And her liver numbers are perfect! Another praise! Just so you all know, I didn't push her, it was HER pushing me! "Mom, come on, you can do another lap!" I promised her to start bringing my walking shoes so I don't kill my feet while doing those laps! (Although tonight, I think I'll be the meanie and tell her no! I'll just sit with her and let her body work on getting those numbers back up!)

Balloons sent from the Goetsch family in Yuma

 We are still very thankful and humbled by the


prayers of many around the World! It is evident that God's hand has been and still is working a mighty work in Anna's body! We are also so thankful for the understanding from our dear church family who have sacrificed time with their Pastor so he can be where he needs to be for this season! Also, while we were getting things situated with his dad!

Our Princess!

An update on Grandpa: he is now in Astoria, living with Craig's sister, Lori, and her family. Craig and Lori were able to go to his first appt. Monday morning to go over the plan for his care. Craig is very encouraged and really liked the doctor! (on a funny note..) She asked Craig if he was in the medical field! He then quickly explained that no, he is not in the medical field, but has just been going through a daughter with leukemia and bone marrow transplant! It is interesting how much medical "lingo" you learn while going through something so major! Well, we had a wonderful two weeks with Grandpa in our home. It was a privilege to be allowed the opportunity to honor our father in this manner! And it was great for the little ones to get the chance to get to know Grandpa a little better! As well as a time to teach our children how to honor our aging parents through caring for their physical needs. I pray that even this short time will have a lasting impact on our children's minds and hearts!

Many have asked how my pregnancy is going. So far, so good. I am almost to the "half way" mark as far as normal people go....ahem. Those who know me well, know that I typically go 2 1/2-3 weeks late every time! I did the math and figured my average time is 16 days, with some going 20, 21, and 22 days late. But if we calculate the 16 days, well, that should land us right on Thanksgiving day!!!! Oh well. Maybe they'll save me some turkey! Anyway, I hope you all have a super blessed day! Thank you again for all of the love and prayers, as well as the encouraging notes! Hope I haven't bored you all to death with the long post! ;-)

The nurse crew came for the party...and pie of course!

It's Official!

Princess Anna...on her birthday

This morning my husband called to tell me that Anna did NOT make 500.....she made 612!!!!!!! She is officially engrafted! Okay, even with sleeping babies, I just about shouted for joy! Also, her other counts have gone up on their own (well, we know that it's actually because of God). Her white cell count is at 1000, her hematacrit (which tells us if she will need a red cell transfusion if it gets to 26 or lower) was up from 28.6 to 30 something..oops forgot the actual number! God is definitely working a miracle in Anna's body! Day +21 is a very happy day!

Simply Amazing! Day +20!

Anna's transplant poster

Love and Support

Today is day +20. The morning started rather early with a baby who needed comfort as she could not breathe through her nose! I rubbed her down with vapor rub, gave her some cough medicine, and rocked her for quite some time before attempting to put her back into her own bed....eh....try again. She ended up at my side, the left side, because Zeke was already on my right side. So we squished but we finally fell asleep...on my part, only sort of. Fast forward a couple of hours...to 7:22 a.m., I woke with a start to a buzzing cell phone. I grabbed it quickly and noticed it was my husband's phone number. I answered a bit groggily and heard Anna's voice on the other end. "Mom? I'm sorry to wake you, but we have some news." I asked if we had gotten to 500. Anna answered, "532!" If it weren't for the two sleeping babies at my sides, I'm sure all of Washington State would've heard me shoutin' Hallelujah!! We praised the Lord together and then Craig led the three of us in a prayer of thanksgiving for the good news and for continued and complete healing for our dear daughter. If her numbers stay 500 or more tomorrow, she will officially be considered fully "grafted"!!!! What an exciting day! What a blessing to have such answers to all of our many prayers! And still, no need for a red cell transfusion!

During rounds, the doctors and staff discussed the goals from here on out. Not wanting to rush things too quickly, we understand that some things need to happen before Anna will be able to get short breaks from the hospital. They will start weaning Anna from IV meds to oral. She also must start eating food. We need her to be as healthy as possible! She has, of course, already done a great job of remaining physically active and this is very good. I look forward to the day we can walk hand in hand out into the warm sunshine of the day!!

Daddy's little girl

Love

Being grafted does not mean that we are out of the woods yet. It just means that Anna's body is now producing cells from Daniel's. We still must pray that her body will accept them as her own and that his cells will accept her body as their own. The graft will soon begin to do it's job and work on healing the sores throughout Anna's digestive tract. This will likely cause a bit more pain before it gets better. Swelling will also be an issue as the damaged tissues heal. Our biggest concern from this point on is GVH (graft versus host disease). This is where Daniel's cells recognize Anna's body as not their own and thus begin to attack her body as a foreign object. This is the point when lung and/or liver failure is most common as the cells attack those vital organs. Also, as she still has zero immune system, any kind of illness could cause major setbacks. We are, however, hopeful that with all of the good news, Anna will get to come home in a couple of weeks. We are preparing for her return, I am needing to brush up on the manual that teaches how to care for the immune suppressed patient. Bleach will become our new best friend. That and paper towels! Our complete thought process on life has to change for the next year! With all of that, I am so anxious to get my girl back in our home! Amongst her family!! I miss her terribly!! We miss her terribly!

The above picture is of Anna's transplant day poster. These posters are hand made by a husband of a nurse at Children's. Actually, I believe there are two husbands that work on them. At the beginning of Anna's treatment, she was given a sheet to fill out, telling about her interests and things she's done. These men then take that info and create these beautiful posters, using everything the patient has written about themselves. And then all of the nurses sign it. It now hangs on her door. The next picture is a precious one to me. Anna and Daniel both sporting their new looks. I love the bond that these two will always have with one another! And these pictures, I might add, were posted with a bit of a reluctant permission. It is a hard thing to be a beautiful young lady and to lose your hair! Very emotional, and I waited until Anna was ready. All I have to say is, she is still beautiful! No matter what! Cancer has not been able to take that from her! She is beautiful inside and out! Thank you Lord for this young woman that I have the privilege to call daughter! Lord, continue to give her strength, continue to use her for your honor and glory! May the light shine no matter what should come our way. Thank you for Anna's sweet spirit, her desire to share you with others, and for her precious smile! Thank you for answering our prayers!

Day +18

This will truly be a short post! Anna's ANC today is 403!!!! Up 200 from yesterday! I have a feeling that we are now hitting the explosion upward! Still no need for any transfusions. Tomorrow marks four weeks since she was admitted to the hospital. It's hard to believe, but time really is flying! Today I will be bringing the family to visit. It's been since her birthday due to her having been in isolation and then having some that weren't feeling too well. We are all excited to get some time together! Another beautiful day in Seattle!

Grandpa has an appointment today and we will learn more of what's going on with him! Options he will have and decisions to make. Thank you all for your continued prayers!

Day +17

Today is day +17. Please forgive the delinquent posting! We have juggled between Children's, S.C.C.A., and home...needless to say, I am exhausted! Yesterday I came home from Children's and crashed on the couch, today I came home from S.C.C.A. and discovered a few errands I needed to run, so no crashing but a quick post will do! Grandpa is doing considerably well as he hasn't needed any blood transfusions since getting here. He has had several appointments and is going to be a part of a research study for his treatment of AML MDS. His spirit is good and I think he is enjoying getting to be around these grandchildren and getting acquainted with them. Selah, bless her heart, calls him, "MeeMaw"! Zeke follows him around like his shadow and all of the children like to "take Grandpa for a walk"! We are very much enjoying our time with...."MeeMaw?"...ahem. Speaking of AML MDS...we just received word that Grandpa does NOT have AML...not yet anyway. He has MDS which is the precursor to AML. This means that he will end up with AML in the future but that could take a year!!! We had originally been told that he had 40% blast cells (considered similar to a stage 4 cancer) and after his bone marrow aspiration discovered that he only has 8%!!! We are rejoicing in some good news for Grandpa!! His prognosis wasn't looking good but now it seems we have more time to enjoy Grandpa than expected! Of course we KNOW that each of our lives is in God's hands and He knows the day and hour in which He will call His children home, but humanly speaking, we are taking a collective sigh of relief! So now, he no longer even qualifies for the research study! His treatment plan is looking much different than it did just moments ago!

Anna is doing considerably well for being on day +17. To date, she STILL has had NO red cell transfusions!!!!! The nurses and doctors are all amazed! This is very unusual, but then again, we do serve a God who does things His way and not always the "usual" way!! It seems her red cells are dying at the same rate that the new ones are thriving! The nurses said if she doesn't need a red cell transfusion, she will be the first they know of to go through this type of treatment without one! She has had two platelet transfusions, but her numbers were still looking pretty good. Anna's ANC (neutraphil) is at 208 today! We praise the Lord! Those numbers have fluctuated a bit each day which is totally normal, but are steadily increasing. You may remember that she must have a number of 500 for two days straight before being considered grafted.  Anna is still astonishing the team with her jogging and jumping jacks, and now her laps around the 8th floor. The other day Anna did 100 jumping jacks! The P.A., Darren, has challenged her to a jumping jack competition for when she is preparing to go home. This has spurred her on! (as if she needed a challenge!)

The 8th floor is looking pretty empty these days. Since Monday, there have been 13 discharges total from the 7th and 8th floors. That leaves our floor with just six patients and an over abundance of nurses. Because of this, we have had short shifts as nurses are sent home. (at least for them it's during an amazing week weather wise!!!)

On the home front, Daniel decided to get into the spirit of supporting Anna.....by shaving his head! Yes, you read that correctly!

And yes, we had a little fun with it. Hope you do too! He may not be too happy with me for sharing these....but it's all in fun! Enjoy! And please, if you all live in the NorthWest, ENJOY the SUNSHINE!!!! Yes! It's true! Seattle DOES get sun and even warmth!! At 79 today, we could get comfortably toasty! May God bless each of you this beautiful day!!!

The finished product!