Tuesday, July 31, 2007

Do Any of Us?

The port does not have to be removed! Anya was scheduled for surgery yesterday and had even started the necessary fast. But the culture results came back negative again yesterday morning so they cancelled it and she was allowed to start eating...yeah!

She was also scheduled to start chemo yesterday and to come home yesterday or this morning (Tuesday) but we weren't able to do either of these. Anya's healthy counts aren't quite where they need to be to start chemo (which depletes the healthy cells along with the leukemia cells). And they needed to keep her in the hospital to do some more IV antibiotics. So we are now hoping to start the chemo on Thursday or Monday and to go home on Thursday night or Friday morning.

Although we are disappointed about both of these things we praise God that the port did not have to be removed. And we praise Him because Anya is doing better emotionally in the hospital and in relationship to the nurses and doctors. She has been laughing and playing with Israel & I and even smiling at the nurses! She still doesn't like when they draw blood or when they wake her at night...but do any of us? :)

Thursday, July 26, 2007

To Whom Shall We Go?

The doctors have determined that Anya had a viral infection that did get in her lungs and a bacterial infection that originated in her port. The viral infection is under control; she has been fever free for a couple days now. However the bacterial infection that is in her port and therefore entering into her blood stream has not been eradicated.

The doctors know that the bacteria respond to the antibiotic in the lab so they are assuming that the med is just having difficulty clinging in the port and therefore not killing the source of the infection. They are now making a special effort to keep the antibiotics in the port for longer periods of time with the hope that it will kill the source of the infection. The doctors are willing to try this for a few more days but if it is not successful the port will have to be removed. We desperately do not want to have the port removed because it would require several additional procedures and extra "pokes" for a little girl who is already terrified & uncomfortable.

The second phase of treatment was scheduled to start this past Monday. Because Anya was ill with fever it has been postponed until this Monday. We are also hoping that the infection can be cleared with the new steps the doctors are taking so we can move on with her treatment. We are also hoping that Anya's body will respond well to the new drugs once they do begin, that she will be comfortable, and that she will not have to return to the hospital until she needs to do so for the portion of her chemo that requires it.

Thank you so much to those of you who have been praying for Anya. I know that it could be discouraging that seemingly God is not answering so many of the specific prayers that we are praying. No one wants Anya to be healed more than Israel or me. But like Peter I say, "Lord, to whom shall we go? You have the words of eternal life...we have come to believe and know that You are the Christ, the Son of the living God" (John 6:68)! Jesus is our comfort, our shield, our fortress, and our hope - without Him we are nothing! And while I trust that Anya will survive this I know that if even if she doesn't we have an even greater hope. We don't have to face death like those who do not know God for we would one day be reunited with Anya in eternity. And so I implore you to continue to stand with us, to beseech the Creator of heaven and earth on Anya's behalf for complete healing, and to come to know Jesus more with us as we all make this journey together.

Sunday, July 22, 2007

Anya & Esther

Well we found out earlier today that Anya does have a bacterial infection. We are now hoping that the infection is not in her lungs or in her port. She had a chest x-ray a few hours ago and has a procedure tomorrow; both should tell the doctors if the infection is in the chest.

She continues to have a fever, cough, & her breathing is shallow and somewhat rapid. We need her temperature to return to normal, her cough to clear, & her breathing to become normal.

The doctor now says we will be in the hospital for at least 4 days...maybe longer. As the doctor said, "Anya is smart". She understands what is going on and it makes things difficult for her. She becomes upset when the doctors come in the room and her overall demeanor is one of sadness while we are here. Please pray for her physical & emotional health.

Also, please pray for Esther. During the day she is usually cheery and energetic. But most nights she is up for several hours crying & upset - perhaps waking from bad dreams. The ER doctor said that leukemia treatment has made great strides in the past several years but it still takes a difficult toll on the whole family. Thus he was not surprised by her reaction; but we pray that God would give Esther and the rest of us comfort & peace.

(Also wanted to say thanks to my dad who has made trips to the hospital for the past two nights to bring food & other extras...I appreciate you!)

Saturday, July 21, 2007

Back in the Hospital

This afternoon (Saturday) Anya was readmitted to the hospital with a cough and low-grade fever. After some initial tests the doctors are still trying to determine whether she has a virus that her body can fight off or a bacterial infection that will require antibiotics. As a precaution they have started her on antibiotics and will need to keep her at least 48 hours, perhaps longer if it is bacterial. Please pray that the problem would be viral and Anya would be released as soon as possible. She was improving so dramatically this week at home but truly hates being in the hospital. Please pray that her time there would be as short as possible and that Anna and I would have the strength to stay with her there again. I have been in Kansas City for a few days to gather some things and will be driving back to KC all day tomorrow (Sunday). Praise God for a wonderful visit here with our church family. We covet your prayers!

Wednesday, July 18, 2007


The results of Anya's bone marrow aspirate from yesterday showed that the number of leukemia blasts in her bone marrow is under 5%, which means she has entered remission! Praise the Lord! While this is wonderful news and definitely an answer to prayers it is by no means the end of the road, nor is it a surprise to the doctors. The goal all along has been for Anya to enter remission by the end of the Induction Phase (scheduled to last 4-6 weeks). Monday completed the fourth week of treatment, so Anya is on schedule and can begin her second phase of treatment. This transition to the next phase is marked by some very encouraging developments.
Ever since Anya came home the two hardest things have been keeping up with her constant and frequently changing needs and administering her medicines. Now that she has finished week four of treatment she no longer needs to take the steroid that she was on (Dexamethasone). This steroid (2 pills taken by mouth twice a day) was the cause of Anya's moodiness, irritability, and incredible appetite/craving for salt, carbs, and protein. As a result of this steroid she also had to take Miralax (a laxative), and Lactulose (a stool softener) to keep her bowels moving, and Prevacid to reduce heartburn. Provided she does not have any problems with bowel movements and heartburn the next few days we can phase out of these meds. The other meds she was on can also be phased out this week. Fluconazole is being taken to avoid infection, but with Anya's healthy white blood cell counts way up her risk of infection has significantly decreased, so the Fluconazole can be discontinued this week as well. Anya was recieving Atarax to keep a rash from spreading, but the rash has disappeared (praise God!) and she can go off of the Atarax this week as long as it does not return.
We have already noticed a significant difference in Anya after being off the steroid for a day. Her moods have become more even and she has laughed quite a bit more. Her appetite has reduced significantly, although she is still eating quite a bit more than she did before she was sick. Although she is more mobile/active than before she is still in bed most of the day watching TV. We make her walk from room to room throughout the day, but she cries each time she walks, partly from fear and partly from the muscular atrophy throughout her body as a result of laying in bed for the past month. We are excited each time we see a little bit of Anya's personality return, and it seems that she is becoming herself a little more each day.
Unless the Lord heals Anya we still have a LONG road ahead of us. The goal is to keep the leukemia in remission for the next 3-5 years. If that can be done then Anya's chance of relapsing will be almost nill. However, at any time in the next 3-5 years Anya could relapse which would be a serious setback to her recovery. She still requires almost constant attention and care and is making weekly trips to the clinic and hospital. We still desparately need your love and prayers and are so grateful for all you have done. We will continue to keep you updated as we learn new things.

Sunday, July 15, 2007

Monday is a Big Day

This has been a fairly uneventful week. Anya continues to be fever free, yeah! Yet she is still uncomfortable, her fingers & toes tingle as a side effect from a medicine, and she is very unhappy most of the time.

The other day while I was in the kitchen washing dishes I overheard Anya & Israel in the living room talking on the couch. She was giggling at the silly things he was saying and it was like sweet music to my ears. I stopped working and stood in the doorway crying silently in thanksgiving for her laughter but also heartbroken that it isn't more common.

This morning started out well for her. She had an uninterrupted night's sleep and was able to talk with Israel some about leukemia and the future. However later she was very disappointed when she wasn't able to go to church with the rest of the family. She cried for a while after everyone else left and it took work for me to distract her from thinking about her daddy being gone. I think she is ready for life to be back to normal.

Tomorrow (Monday) is going to be a hard & big day. Anya is not allowed to eat after 9am because she will be sedated in the afternoon for a spinal tap and bone marrow aspirate. Please pray that she is in remission so that we can procede with the remainder of her treatment. And please pray for her peace while she is fasting. She eats about 3 times as much as before she was on steroids so being without food all day will be a struggle for her.

Thursday, July 12, 2007


Given our situation you might think that this blog entry is titled Overwhelmed! because of the trial we're going through. But you'd be wrong!
The overwhelming part is the incredible amount of support that we have recieved from freinds, family, loved ones, and more often than you'd believe, complete strangers. Every day we wait expectantly for the mail and then open the cards, gifts, packages, and letters that arrive. Each day we are simply shocked by the love, tenderness, kindness, and generosity of so many people from across the country. We simply cannot express our gratitude to those who have sent things to us in the mail, not to mention the numerous emails we have received to encourage us. We are just amazed and humbled. Every day we sit here opening the mail and smiling, sometimes crying for joy, and looking at each other in shock.
I do not know what it would be like to endure this time without your love and support, but I know that you have all brought us a great deal of hope, joy, and life in the midst of a very difficult ordeal. We do not have words to express our gratitude, so let us simply say, Thank You. May God give treasures in heaven to each of you for the treasures you have passed on to us.

With all our love,

The Steinmetz Family

Tuesday, July 10, 2007

Yesterday (Monday) Anya had her second visit to the clinic. They accessed the port on her chest and gave her a dose of chemotherapy (Vincristine). They also withdrew blood to do lab work on and found that all of her good blood counts (healthy white cells, platelets, and hemoglobin) continue to rise and demonstrate that as the leukemia is killed the blood is replacing it with healthy cells. We will have her next bone marrow aspirate this coming Monday and the doctors fully expect for her leukemia blast count to be under 5%.

Anya continues to be very moody, frustrated, and demanding throughout the day, all of which are attributed to the steroids. It is certainly a test of patience and a challenging journey, but God is giving us the strength to continue. She does seem to improve a little each day, her mobility has increased, she's more interactive at times, and her bowels are moving regularly which is a significant answer to prayers. We were also blessed today by the arrival of some of our things from our house in Kansas City. A couple in our church that lives here in the Toledo area picked up some stuff when they were in Kansas City at the COG7 Convention this past week and brought them to us. It's so nice to have more of our things here. I (Israel) will be travelling to KC next week for a few days to pack up some more stuff and drive it up here in our other car.

We are so incredibly grateful to the many, many people who have surrounded us and lifted us up with thier prayers, cards, gifts, and support. We are still hopeful that God will work a miraculous healing in our daughter's body. Like the man who encountered Jesus we say, "Lord, we believe, heal our unbelief!" At the same time we are seeking to learn from and listen to God in the midst of this trial and trust that in all things, even this terrible thing, God will work all things for the good because we love Him and called according to His purpose. Please pray not only that Anya would be healed, but that we would come to know Jesus more intimately through this experience. Thank you again for all you have done to pass God's love on to us!

(And thank you to those who bought the hats for Anya...we appreciate it!)

Friday, July 6, 2007

Here are a few verses from Psalm 10 that communicate some of the daily struggles I go through with God. As usual with David the Psalm progresses from hopelesness and despair to a breakthrough where he is reminded of the goodness and mercy of God. I find myself cycling through like this several times each day. I trust these words will be encouraging to you as you face life's various trials.

Why, O LORD, do you stand far off?
Why do you hide yourself in times of trouble?

Arise, LORD! Lift up your hand, O God.
Do not forget the helpless.

You hear, O LORD, the desire of the afflicted;
you encourage them, and you listen to their cry

Good News!

We have good news...the bone marrow aspirate revealed that Anya has only 5-7% leukemia blasts remaining! And her good cell count has risen on its own! This demonstrates that the leukemia cells are responding to treatment and not returning. These results were what the doctors were hoping for and we are thrilled!

While this is very good news we still must continue with treatment for the next couple years to prevent relapse. Anya will continue to stay at home for most of the remainder of this first stage of treatment (which ends at the end of the month). She has weekly visits to the clinic where she will receive chemotherapy, have blood work done to check her blood counts, and other various things. Several people have offered to come visit us here at home but Anya is still not able to receive visitors because she is immocompromised. However we appreciate your offers and look forward to seeing you all again soon.

It has been very nice to have Anya home - for her benefit and ours. However her care is still absolutely exhausting. Most of the time she is crying, demanding, and unable to communicate her needs clearly. The doctors say that it is because of the steroids but I know that she is also uncomfortable, scared, and obviously unsure of what she wants or needs to feel better. Please pray for her that she can be comfortable and have joy and for us to have patience and long suffering. We love her so dearly and it breaks our hearts to see her in pain, discouraged, or unhappy.

There have been moments in the past few days that give us hope and inspiration to continue with joy. One such time happened yesterday afternoon. Anya was asking to hold Isaiah; when we laid him down with her she was smiling, laughing, and playing with him. Anya was back to her old self again for a few minutes and it was like a breath of fresh air for us. And today Anya was crying and Esther walked over to her, patted her leg and said, "Shh...it okay Anya". Despite the difficulties we trust that God is good and will bring our family closer together through all of this.

Anya's next clinic visit is on Monday. And the next week she will return to the hospital for another spinal tap and bone marrow aspirate.

"He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, 'He is my refuge and my fortress, my God, in whom I trust.'"

Tuesday, July 3, 2007

Home At Last

Anya is home at last! She was released around dinner time and slept for a couple hours once she was in her new bed. It is so good to have her here where she can relax and we can all be together.

We almost had to stay another night in the hospital because her blood pressure was creeping up through the afternoon. But the doctor decided to put her on high blood pressure medicine and to send us home with a blood pressure cuff & stethoscope. We have to take her blood pressure at least 3 times daily and report high readings to the doctor.

We will be going to the clinic on Friday for blood work and a check-up. If everything is good we will be able to return home. We hope to also find out the results of the bone marrow aspirate at that time.

Anya's hair is increasingly coming out. There were strands all over her, the pillow, and the bed today. So I have started looking for scarfs, caps, & turbans for her. According to websites it looks like she needs hats that are very soft, cover the entirety of her head, & won't fall off easily. I found a couple that I think she'd like:

http://www.headcovers.com/moreinfo.php?id=394 pastel pink and $12.99
http://www.hatsscarvesandmore.com/Merchant2/merchant.mvc?Screen=PROD&Store_Code=HSAM&Product_Code=u-petite3seam&Category_Code=Chats white and $18.00

We also could really use a lamp for her room. She doesn't like bright lights even during the day but especially during the middle of the night I need a soft light to change diapers, give meds, etc. I found one at Target http://www.target.com/gp/detail.html/sr=1-1/qid=1183517107/ref=sr_1_1/601-8556162-0652148?ie=UTF8&asin=B0007G6OE8.

We appreciate those who have encouraged us to share our needs; we feel your support.

Monday, July 2, 2007

Another Night

This picture was taken just less than a month ago...Anya is such a good big sister.

Just a quick update: Anya's bone marrow aspirate was at 11am this morning and all went well. Dr. Kitchen says that the initial evidence looks good, but we won't know anything for sure until tomorrow or later.

Unfortunately Anya will be spending at least another night in the hospital. She has been constipated and the doctors won't release her until that situation improves. She desperately wants to go home; we are praying that Anya will be able to do so quickly. A good part of the past couple days, she has been withdrawn and sad. We are hoping that she will improve in this area once she is away from the hospital.

I met with Anya's advanced practice nurse today for over an hour to learn how to properly care for Anya at home. There was so much to learn! But I was happy to hear that Anya won't be getting radiation treatment and it doesn't look like she will need a bone marrow transplant. Praise the Lord!

Oh, and thanks to those that purchased the car seats! We appreciate you!