They don't call it "intense" for nothing

On Friday, December 21st Anya visited the clinic to confirm that her counts were high enough to proceed with the next stage of the current phase of treatment. The current 6-9 month phase she is in is called Consolidation and this new stage of it is called "Delayed Intensification".
We started Delayed Intensification on Monday, December 24th, with a trip to the hospital where Anya underwent another Lumbar Puncture (Spinal Tap), the procedure where she is placed under conscious sedation and they draw out a sample of spinal fluid (for testing) and inject chemo directly into her spine. The procedure was uneventful and Anya and I (Israel) were able to return home that afternoon.
While at the hospital Anya also recieved a dose of steroids. In addition to numerous clinic trips for chemo the Delayed Intensification stage (which is scheduled to last 21 days) has a daily regimin of steroids that we give Anya here at home. If you recall Anya took steroids early on in her treatment and they wreaked havoc on her. The steroids are both mood and appetite altering. We have seen both effects here in the first 48 hours since she recieved her first dose (she takes a dose morning and evening). Early on in the treatment Anya's doctors explained possible side effects in very factual, clinical terms. Now that we have built a friendship and great deal of familiarity with them they often accompany the technical descriptions with more direct, unguarded explanations. On Monday when Anya's doctor was consulting with me about what to expect during this stage she said, "In the next 24-48 hours [after starting the steroids] Anya will be pretty crazy. They don't call Delayed Intensification 'intense' for nothing."
Anya has been fussier, more sensitive to pain or disomfort, has outbursts of tears and frustration, is especially needy for attention (needs "company" when she's using the potty), and despises taking her medication. Last night her dosage (several tiny pills crushed up in a few tablespoons of pudding) took over 30 minutes to consume with her crying, pleading, and fighting Anna off. I just lay in the other room holding Esther, crying and praying. It made me wonder how we endured the first eight weeks where that kind of suffering in Anya seemed constant. She is such a brave girl. After she had finished taking her medicine I came out of the room and sat next to her and Anna and cried with her . At one point she said, "I just want to be done with luekemia." Of course this only made me cry harder and then out of nowhere she began tickling my chin and trying to make me laugh. That leads me to the good news.
The first time Anya took steroids she had just recently been diagnosed. Interaction with medical personnel was terrifying to her, she was in pain most of the time, confused, scared, frustrated, and trying to adjust to a life away from home that was seemingly different in every way. The steroids only compounded everything she was feeling and she was genuinely miserable most of the day with short breaks where she would be quiet and melancholy. Thus far the effects of the steroids have come in relatively small doses, with her being her usual cheerful and helpful self throughout the majority of the day. For instance, this morning she went to the sink after breakfast and "washed" dishes for about thirty minutes. Then she felt tired and lay down for a while to rest. Also, her appetite for food, which was insatiable the first time around, has only been slightly greater thus far since she started the steroids.
We are hopeful and prayerful that the effects of the steroids will remain minimal throughout the next three weeks. The doctors have repeatedly warned us that this three week stretch is often the most difficult stage of the entire 5 years of treatment. However, Anya has marched to the beat of her own drummer for most of the treatment thus far and we are hopeful that the same will be true of this stage. She has only had one delay in her treatment from sickness, something that most children her age fight with constantly. Twice she has had a fever that caused us to go to the emergency room but then disappeared within 24 hours, keeping her treatment from being delayed. She has experienced relatively few delays in her treatment as a result of her counts not recovering quickly enough and she has enjoyed good health outside of the leukemia (meanwhile everyone else in the house has fought with allergy, sinus, and seasonal cold issues!). Also, Anya has experienced relatively few side effects from the drugs and consistently amazes the doctors with her energy and cheerfulness levels. We attribute all of these things to God's miracle working power and the courage He has given Anya. We believe that He can see us through this "intense" stage with minimal problems. At the same time we covet your prayers as even the "minimal" effects are nearly devastating for us. It is so difficult to watch Anya suffer and it is exhausting to care for her and the other children while she's struggling. We are so thankful for Anna's family who continue to be a constant source of support as we live with her parents and cannot express our gratitude to those who have sent countless gifts and cards that give encouragment and joy to all three of the kids. We will keep you updated as we are able. Thank you for your prayers!

Bacteria Free!

Anya's counts were high enough on Friday to proceed with chemo, so they gave her two different chemo drugs at the clinic before sending us home for a two week break. We were also happy to hear at that time that her ANC (absolute neutropil count) was high enough to take a weekend excursion to Indiana to visit extended family and to attend a family wedding. (congratulations Andrew & Leslie Barker!)

So Saturday morning we packed our things and our kids into our "new to us" van (more about that to come) and headed off to a little town outside of Indianapolis, Indiana. The five of us spent the evening with my grandparents & my uncle and were able to attend service at their home church on Sunday morning.

Toward the end of service, Anya started getting fussy. So shortly after arriving back at my grandparents' home we decided to take her temperature & found she had a fever of almost 102 degrees. We called Anya's doctor and she advised us to take Anya to the local Children's Hospital ER for blood work and a check-up. Anya has become comfortable with the doctors and hospital rooms at St V's but between everything being unfamiliar at the new hospital and missing her nap she was pretty upset and scared throughout the whole endevour.

Fortunately because her other vitals were stable she was able to return to my grandparents' house until we could return to Toledo this morning. Once we arrived home we heard the news that Anya's bloodwork was still bacteria free - meaning NO INFECTION! We praise God that she didn't and doesn't have to stay overnight in the hospital for more antibiotics and testing! Thank you to those of you who knew about Anya's fever and were praying for her.

The plan is currently to return to the clinic on the 21st for bloodwork and then on the 24th for more chemo & to start steroids again.

Medical Bills Paid!

After several months of prayer, many hours of paperwork, and countless miles of redtape we have learned that Anya's medical bills will be paid for in full at least as of September 2007! We have qualified for two programs run by the state of Ohio that will serve as our primary and secondary insurance providers. Between the two of them they will completely cover Anya's medical expenses. We are so blessed and encouraged by this news and thank God for this incredible provision!

We also want to again thank all of those who have been so generous in giving to us since Anya's diagnosis. We have been amazed at the number of people; friends, family, and strangers who have so lavishly blessed us. These gifts are being used for our ongoing living expenses, Anya's "non-medical" care, the needs of our family, and the various opportunities we have to bless others. And we are especially thrilled to have had the opportunity to purchase a used minivan to help accomodate our growing family!

For the many who have been concerned about our needs regarding medical bills we just want to assure you that those needs have been met. Your kindness, concerns, and prayers have meant so much to us. May God bless you richly for your generosity, and may he provide all of your needs according to His riches in glory! We love and appreciate each of you.

Pizza..yummy!

On Tuesday, Anya was admitted to the hospital for a spinal tap (intrathecal chemo), intravenous chemo, and her intravenous preventative antibiotic. She is not permitted to eat for several hours prior to her sedated spinal taps and this combined with the medication being "late" from the pharmacy made for a difficult morning with an unhappy, hungry Anya. But aren't we thankful things weren't much worse?!

Fortunately after she woke up she was allowed to eat. So after getting some pizza into her hungry tummy and after the "sleepy medicine" wore off, Anya was back to her normal cheerful self. We did have a little "scare" while she was receiving her antibiotic - her heartrate rose to 144! But the attentive ICU nurse responded by decreasing the speed of the infusion and Anya's heartrate returned to normal so she was able to return home after being watched for an hour.

Anya's next appointment isn't until this Friday, December 7th. If her counts are high enough, she will receive two more chemotherapy medications intravenously followed by a two week recovery period.

Following this recovery period, she is scheduled to go back on steroids (starting Dec 22nd). The time Anya was on steroids a couple months ago was the most difficult time thus far (other than her initial hospital stay). The dexamethasone steroid is the drug that made Anya moody, unreasonable, unhappy, discouraged, constantly hungry, and terribly demanding. We pray that God would spare her from these common side effects and give us the strength to care for her. We have seen God spare Anya from other terrible typical side effects and from multiple infections and we praise Him.

Life Goes On

Our apologies for not updating the blog for a while. We know that many people view this blog often for updates and it may concern some of you when there is not new news for a few weeks. Please know that on this blog no news is "good news" and we will always update you about significant changes and/or new prayer needs, etc.
Anya's treatment continues to progress without delay. She is not currently taking any meds at home (except an occasional dose of Miralax to counteract the bowel-slowing effects of the Vincristine) and gets the majority of her chemo through her port during clinic visits. On Friday she will get the two intermuscular shots in her legs and we ask that you remember her in prayer that day as she is consistently upset about getting those shots and usually cries pretty hard when they give them to her.
Anya's counts have been high for several weeks and we've taken advantage by getting her out and about a little bit. She's been able to attend church a few times and has again been a blessing to everyone as she dances and sings during the worship services. At a recent service she danced the whole time with a little ten year old girl that we later found out was at church for the first time in her life. At one point during the service Anya told Anna that she was "making a best friend." The doctors have been extremely pleased with Anya's response to the treatment and her low instance of side-effects. They are always impressed by her energy level, attitude, and resiliency against sickness. We praise God for all of these things and recognize them as direct answers to prayer. In fact, the only indication at this point that anything is wrong with Anya is that she does tire and get fussy easier than usual. The doctors say this is to be expected and attribute it to her low white blood cell count. We have started having her take an afternoon nap again each day and this has helped a great deal. After several months of exhaustion Anna and I are trying to take some time to relax and get breaks from the daily grind now that Anya's care is not so demanding.
Yesterday our whole family had a wonderful time at COSI, a local science center here in Toledo. A large group from the Owosso, MI Church of God came down for the day and invited us to join them. Anya and Esther had a blast (not to mention Anna and me!) playing with all the toys and learning cool science facts. The best part was seeing old friends and enjoying fellowship and time with some of our church family from Michigan.
The only prayer request I'll mention before signing off is to ask you to pray for all those who have been supporting us through prayer, correspondence, finances, etc. We have been overwhelmed with love and care from so many and we ask that you would pray for God's blessing and favor on them. May He supply all of their needs according to His riches and glory.

Augmented Interim Maintenance Begins

Well, Anya's counts weren't high enough on Tuesday for more chemo. So they asked us to be at the clinic again first thing this morning for blood work. Fortunately Anya's counts were high enough today to start so we were sent up to the PICU for the sedated spinal tap with intrathecal chemotherapy and the intravenous chemotherapy. As usual everything went well so we were sent home before 2pm. We praise God that Anya's counts have recovered; if it would have taken a total of three weeks, there may have been reason for concern.

So Anya has now officially started Augmented Interim Maintenance which will last for six weeks followed by a two week break for her body to recover. This phase requires at least a few clinic visits for chemo shots in the leg or intravenous chemo and one overnight visit for intravenous chemo. After that we will have one more set of chemo before starting maintenance - YEAH!

First time eating cereal...yummy! But where was his mommy...he isn't wearing a bib! :)

Sister love!

For the love of Fall!

Suffering

I wrote the blurb below in my personal blog earlier this evening and Israel asked me to share it here. It is very personal but I share it with the hope that perhaps it will encourage those of you who read the blog who are also facing trials.


Suffering

"Ask yourself this question: What kind of a following would result if the sole reason for the affection toward the leader is that he provides his followers with bread?" asks Ravi Zacharias in his Jesus Among Other Gods.

Here Zacharias specifically addresses the nature of the temptation Satan posed to Jesus when he asked Him to turn the stone into bread in Matthew 4:3. Zacharias directs us toward the idea that if Jesus turned the stone into bread or for that matter if He defeated the Roman Empire or healed every ailment and disease, what would be the real motivation behind the people's affection? Would it even truly be affection or merely a response of self-love?

This line of reasoning causes me to wonder: Has Christ allowed my suffering or perhaps even the suffering of humanity throughout history at least in part to reveal our hearts' intentions? Does our response to suffering demonstrate who our true first love is - our own selves or our Creator-Redeemer?

In that way, is suffering a type of Isaac in that like Abraham's call to sacrifice his only son to demonstrate His undying love for God, suffering exposes the object of our affection - our comfort and ease or our Savior? If so, are we able to follow in the footsteps of Abraham who chose to obey God in the face of his tremendous pain and confusion?

Desperately I want God to heal my daugher. Yet more than anything, I want my family to be a family that loves God despite the trials, in the midst of our pain. Should we accept good from God, and not accept adversity (Job 2:10)? I pray we will always echo Job's cry by saying, "Though He slay us, yet will we trust Him" (Job 13:15).

Kansas City Visit

Israel is planning to make another trip to Kansas City the weekend of the 27th and 28th. If you live in Kansas City, I'm sure he'd love to see you at service that weekend!

Augmented Interim Maintenance

Anya was scheduled to start the next phase of her chemo treatment, Augmented Interim Maintenance yesterday. She was to be admitted for a spinal tap at 3pm but her counts, especially the neutrophils at only 490, weren't high enough so it has been postponed until next Wednesday.

So for this week, rest and healing are the only things on the treatment agenda. The nurse is very confident that Anya's counts will have recovered by next week so we should be starting this next six week phase at that time.

Anya has been such a frequent source of inspiration for me. The other night Israel and I were playing a game at the kitchen table and Anya came in to tell us that she just done something that Israel had told her not to do because she forgot that she wasn't supposed to do it. I told her that I appreciated her honesty and sent her back to play. But then we decided to call her back in to tell her how proud we were of her. When she came in Israel proceeded to shower his affection on her but she was teary eyed and somber. Their conversation went as follows:

Israel: Were you afraid you were in trouble?
Anya: No.
Israel: Then why are you teary eyed?
Anya: God.
Israel: What about God?
Anya: He loves me.
Israel: You are crying because you are thinking about how much God loves you?
Anya: Yes.

I am so thankful for a little girl who knows God's love despite her struggles. I am thankful that she understands true faith - faith that is not dependent on our circumstances but on God's faithfulness.

October News

October has been a fairly uneventful month overall although last week had us spending more time in the clinic and hospital than planned. Anya was only scheduled to be in the clinic for chemo last Wednesday but her hemoglobin count was low so they had us check into the hospital for the day to get blood. We were home Wednesday night in time for dinner but due to a low platelet count they wanted us back into the clinic last Friday to make sure the platelets were recovering. Praise God they were and we were allowed to go back home from the clinic, rather than spending another day in the hospital to get platelets.
This week is scheduled for a clinic visit Wednesday to get chemo. Since Anya's counts had begun to recover as of Friday we are hopeful that they will be even higher on Wednesday and no additional visits will be necessary this week. Her ANC is still extremely low thus she is at the highest risk for infection. As a result we've kept to the house for the most part and tried to limit her exposure to anyone outside the family.
I (Israel) have been able to attend church the past few weeks, but it's been quite a while since Anna went so we are hopeful that she'll get an opportunity for fellowship soon. Anya does well most the time and is usually happy and energetic, however the past few weeks she has definitely shown a decrease in energy and a tendency to be fussy at times. She is also pickier about foods and requires extra rest throughout the day. All of this is expected with her white blood cell counts being so low- a direct result of the chemotherapy. The past few nights she's also woke up very upset and crying, apparently in her sleep. Please pray that these night terrors would stop as they are very hard on everyone in the house. Esther and Isaiah continue to do well and we are thankful for the ongoing love and support we recieve from so many across the country. We will update the blog later this week with Anya's counts from this Wednesday and give info concerning what lies ahead for next week. Thank you again for your prayers.

High Spirits and Low Counts

Esther turned 2 years old today and things are going well here at the house. All three kids are happy and smiling, currently playing with Mommy on the floor of the living room while I try to catch up on emails and other computer stuff. Anya still fights side effects (tired spells, increased fussiness, body aches, bowel trouble, and headaches) and is taking a couple oral meds each night that she's not crazy about (a chemo pill and a pill to keep her from being nauesous from the chemo) but overall is doing well and cheerful most the time. Today will be our third clinic visit of the week with one more tomorrow. At each visit they take blood and give her chemo through her port which has remained accessed all week (they'll take the exterior contraption off at the end of her visit tomorrow).
The CBC (Complete Blood Count) from Tuesday of this week showed that her hemoglobin and ANC (Absolute Neutrophil Count) had both plummeted from the latest chemo round. Throughout Anya's treatment her counts have stayed fairly high and the doctors have been very pleased with how well they recover after big chemo doses. They are not troubled by how low these two counts are currently, however the low ANC puts Anya at a very high risk of infection. We are doing our best to keep everyone in the family away from germs and limiting our trips out of the house. We are hopeful that Anya's counts will recover quickly and she'll be cleared to leave the house again soon. She was so happy to get to go to church several times, visit the library and run some errands with me the other day, including a trip to the pet store where we picked up a few more fish for Anya's aquarium (her B-Day gift from Anna and me). At our clinic visit on Tuesday Anya's doctor said that she looked very good and was doing well. I asked how Anya was doing relative to other patients at her stage of treatment and her doctor said she was doing extremely well. She is active, energetic, experiencing a minimal amount of side effects and resonding well to the chemo.
Anna and I are doing well but need your continued prayer for us to have patience, tenderness and strength. In close quarters with a lot of exhaustion, stress, and strange, new circumstances things can get tense. Pray that we'll both learn to demonstrate our love to one another and our children in a greater way during this trial. Thanks again for your love, prayers and support.

Wednesday Update

By the time Anya got to the ER Friday night she no longer had a fever. We definitely believe this was an answer to prayers. Her blood cultures have come back negative from that night so we are rejoicing that she did not have an infection. Meanwhile Anya had a routine check-in at the hospital Tuesday morning and is headed home this morning (Wednesday). The overnight stay was to give Anya chemo that she recieves via IV through the port in her chest. This particular chemo can only remain in the body for a short time or it will cause liver/kidney damage so she has to be monitored in the hospital and submit all of her urine for tests to demonstrate that she is passing the chemo. Anya is holding up EXTREMELY WELL. I spent the day with her in the hospital before Anna relieved me around 8pm and Anya was cheerful and energetic the whole day. Which is more than I can say for myself! I caught a nap while Anya painted with a lady from the playroom. Anya is quite a little charmer with all of the staff and interacts very well with them. We spent the day watching TV, reading books, playing and talking in her room, playing in the playroom, walking the halls and looking at the two aquariums on her floor. Anya's spirits are high and she continues to trust that God will heal her. We continue to be blessed by all of the prayers and concern that go out to us. I am here this morning with Isaiah and Esther enjoying some downtime around the house. Here are a list of thanksgivings and ongoing requests for all of you who are praying:
THANKSGIVINGS
- God continues to answer a lot of "little" prayers and we sense His hand and direction often although it is sometimes difficult for Anna and me to maintain a vibrant connection with God in the midst of the pain, confusion, busyness, etc. that characterize our current situation.
- One such "little miracle" was the disappearance of Anya's fever Friday night. We got conflicting readings from one thermometer so we tried another one and got the same reading of 100.5 from her underarm and under her tongue. However, when she was examined just one hour later by the nurse in the ER she had no fever at all and no other signs of infection.
- Another "small miracle" has been Anya's blood counts. Her white cell count and her absolute neutrophil count have both been high, allowing treatment to progress unimpeded throughout the first month of the Consolidation phase. It has also allowed her to attend church a few times, have freinds over and go into public places such as the library. While the doctors are not baffled by the high counts they are very pleased and consider Anya to be doing very well for her stage of treatment. Yesterday one of her doctors called her their "star patient".
- All of our children have been such a blessing to us with their joy, energy and love. We cannot imagine the difficulty of this situation if we did not have each other. We are also so grateful for the love and support of so many family members and freinds from across the country.
- I have been able to visit our home in KC a couple times and am planning another trip in mid October. Our church family there has been so generous and supportive of us and we thank God for them.

REQUESTS
- Complete healing for Anya.
- That we would be a light and witness to the medical staff.
- That Anna and I would find more time to spend in prayer and Scripture reading and that God would bless those efforts with spiritual growth and strength.
- That God would richly bless all those who have been a blessing to us.

P.S. We're also thankful that Isaiah and Esther continue to learn and grow. Zeek is rolling from his back to his stomach frequently these days and Esther asked to go potty...and actually went! for the first time yesterday morning.

Friday Night ER Visit

Last night Anya complained of a headache so we took her temperature as a precaution against masking a fever before giving her Tylonol. She had a fever of 100.5 so we called her doctor who requested we take Anya to the emergency room. At the emergency room they took her vitals & did blood work.

The ER doctors did not detect any infection and her blood counts were in good shape so they sent her home at 11pm. The doctors are also doing a culture on her blood and if it comes back clear they will assume the fever is a side effect of the chemo. However if the culture comes back with growth, Anya will probably have to return to the hospital for treatment and her chemo will have to be delayed.

So we are asking God to cause the culture to come back clear and for Anya's fever to disappear.

Tuesday Update

Anya left with Israel about an hour ago to go to the hospital for her scheduled sedated spinal tap. She was fine with visiting the hospital but she was NOT fine with having to skip breakfast. But how many of US would be? :)

After receiving the good news that Anya's counts have rebounded she has been able to visit two church services & to get her pictures taken with Esther and Isaiah at JC Penney. We thank God that she has been well enough to get out of the house.

Overall Anya continues to feel alright. The past several days she has had some more headaches, stomach aches, and times when she just doesn't feel well. But we are still thankful things aren't much worse. And the rash has all but disappeared so I imagine the doctors will continue to use the Peg-Asparaginase. Praise God!

Stages of Treatment

In case it hasn't been clear in our blogs I wanted to give some information concerning Anya's treatment plan.

Anya will have three stages of chemotherapy treatment by the time she is finished: induction, consolidation, & maintenance. She is currently in consolidation and will be for about the next six months. Right now they are focusing on her nervous system (intrathecal chemotherapy) - hence the weekly spinal taps.

When Anya gets a spinal tap the doctor pulls fluid out to check for leukemia cells and pushes in a chemotherapy drug. Thankfully, thus far Anya has been leukemia free in her nervous system. This is one of the factors that has put her in a standard risk category. (According to the American Cancer Society, someone in the standard risk category has a 65-85% chance of cure.)

When consolidation is complete, Anya will begin the maintenance phase. It is my understanding that it will last for two years and will require treatment a couple days a month.

Anya is now in remission, meaning less than 5% of her cells are leukemia cells. If she would not have reached remission by the fourth week she would be considered "high risk" which brings with it higher doses of drugs and other treatment (and a lower overall chance of cure).

The doctors do not forsee that Anya will need a bone marrow transplant. Transplants are reserved for patients that are not likely to reach long-term remission with chemotherapy alone. They also do not expect that Anya will need radiation therapy. We praise God for this because radiation therapy can cause problems with growth & mental development in children.

Hope this overview helps answer some questions. If you have more, please feel free to ask!

Sources: http://www.cancer.gov/ and http://www.marrow.org/ (and of course, our wonderful doctors at St. Vincent Medical Center)

Rash

One more word about the rash: Anya's doctor said that she was unsure of the cause of the rash. She assumes that it is either an allergic reaction to one of her chemo drugs (Peg-Asparaginase) or an allergic reaction to something in the home like laundry detergent or soap. She hopes that it is the latter because if Anya is allergic to Peg-Asparaginase they will have to discontinue its use and the replacement drug is expensive and difficult to obtain. The replacement is only produced in France and of the handful of children she has treated that needed it only one of them were able to get it.

PS. Anya just woke up and I asked if anything was bothering her. She said that she was sleepy but that it was probably because she "took a long time resting". :) I love her optimism!

Friday Update

Yesterday Anya was sleepy and developed a rash on her legs. We contacted Anya's nurse and she suggested that we keep an eye on the rash and take her to the ER if it worsened. She also asked that we come in today for bloodwork for a CBC (complete blood count).

Fortunately the rash did not get worse so she just had to visit the clinic this morning. In order to do the bloodwork the nurse only had to poke Anya's finger. We are grateful that they didn't need much blood in order to run the labs but strangely it seems like the poke is more traumatic for Anya than when they access her port! Israel said that Anya cried from the minute the nurse walked in the door until they left the room.

While obviously the poke wasn't any fun for Anya we are thankful to know that Anya's blood counts have recovered some from the chemo. She now has an ANC (absolute neutrophil count) of 2.8 which is within the normal range*! This means we are free to take her in public as long as there are no noticeably sick people around her! Of course, we will still take precaution because anyone can contract an infection and for Anya an infection means an admit to the hospital and postponing chemo. But we are thrilled that she can attend a church service or visit the library.

Right now Anya is taking a nap and has been asleep for two hours. Until yesterday she seemed to be experiencing very few side effects from the chemo medications but she has become sleepy, mildly fussy, has an achy jaw and stomach, and constipated. But today the doctor said that all of this is normal and reaffirmed that it could be much worse.

*Neutrophils are a type of white blood cell that fight infection. Normal is considered between 1.5 and 8.0 and risk of infection increases when the number of neutrophils drop below this number - called neutropenia. If the number of neutrophils drop below .5 the risk for infection is especially high.

Happy Birthday!

Today is Anya's fourth birthday! We are planning to celebrate tomorrow evening at my parents' house with cupcakes with ice cream and presents. Of course it will only be our family for the party to avoid more risk for infection. But it will be a joyous celebration; we are so thankful that God has given us these four wonderful years with her!

Tuesday Spinal

Anya left a few minutes ago for her weekly spinal tap. She will be getting a different drug this week than last week and she will also get a shot with another kind of chemotherapy. We are praying that Anya's body would react as well to these drugs as the ones she was was taking the past few weeks.

She was such a trooper this morning - not complaining too much about not being able to eat and not crying when it was time to leave. We praise God for the dramatic change we've seen in her since the beginning of treatment.

Family News

As those of you in Kansas City already know, Israel went back to KC for a visit this weekend. He loved seeing everyone and attending Scott and Summer Taylor's wedding on Saturday evening. He was blessed by all the hugs, tears, & kind words that were shared with him concerning Anya and our family. We appreciate you all!

Many of you have expressed interest in how the kids are growing up and changing so I'll share a few things here: Anya has started writing her letters and she loves playing outside. Esther is such a talker! She will be two in a few weeks and talks all day long, usually in complete sentences. She is as sweet as ever and quite the jokester. Isaiah is now almost five months old. He is very content, smiley, and lovable. He just started spending time in an exersaucer and is around 15 pounds!

More Pictures

Uneventful Week

This has been a fairly uneventful week. As scheduled, Anya visited the hospital on Tuesday for a sedated spinal tap and Wednesday, Thursday, & today we went to the clinic for chemotherapy. She has adapted very well to the clinic visits and has even picked some favorite nurses that she sees on a regular basis. She especially loves a nurse named Pam; Anya frequently says that she wants to be like her when she grows up!

Last Sunday we did have an unexpected visit the ER because Anya was having some diarrhea and a couple other problems. Fortunately everything was okay both on Sunday and on her follow-up visit on Monday.

We are so grateful to God for His mercy through the second phase of treatment thus far. Anya has complained of headaches after the AraC chemotherapy drug but she has not had the severe flu-like symptoms the doctors warned us about. She is often needy - for time and attention - but her emotions have evened out and she is back to her sweet, sensitive self. She is still able to be up and about, playing inside and out. Anya is not permitted to go to public places like church services or stores because of the possibility of infection but she enjoys frequent outdoor visits with her cousins and my friends' kids.

We again thank all of you for your love, prayers, & support. We are grateful for the letters and packages with gifts that so many friends have sent. They have encouraged our hearts and given Anya things to do to take her mind off her difficult circumstances. We are also grateful to be around my parents who are able to shower her and our other two children with love and attention.

Hospital Visit

Anya was admitted to the hospital at 8:30am Tuesday morning. They accessed her port for blood work and found that her counts were wonderful! They had skyrocketed through last week and so she was in great condition to start the next phase of treatment.

While in the hospital, Anya had a spinal tap (under sedation) in the afternoon, an oral chemo drug before bed, IV chemo through the night, and more chemo through the IV on Wednesday afternoon. Anya was such a brave girl & happily interacted with all the nurses and doctors. Praise God! She was released around 2pm and is back home and still feeling good.

Anya had a clinic visit for a few hours this morning to get more IV chemo & will be returning there tomorrow for more of the same. The next few weeks will look very similar to this week. The doctors do expect that the chemo will bring her counts down through the next few weeks so we pray that Anya would be protected from infection. We also ask that God would keep her from feeling severe side effects from the chemo drugs.

Several people have been interested in Esther so I'll also post a little about her here. Esther seems to be doing well. Intermittently I can tell that the stress of everything affects her; she gets fussy, has trouble sleeping, and is more aggressive than usual. But we are thankful that Israel is able to be home with us so that each of the children get attention. And of course grandparents are a BIG help too! Most of the time Esther is happy, talkative & loads of fun! I can hardly believe that she will be turning 2 next month!

Treatment to Proceed Monday

I just got off the phone with the doctor who had good news for us. The final results on Tuesday's bone marrow aspirate are in and Anya is still in remission! This means that we can go ahead and continue treatment on Tuesday. Anya will have an overnight stay at the hospital Tuesday that will begin our next phase of treatment (Consolidation). She will recieve a spinal tap in the morning and then recieve chemotherapy via IV overnight before being discharged Wednesday morning. Please pray that all would go well during the hospital stay and that Anya's spirits would remain high. It has been such a joy having her home and happy with no meds or major complications. We would also appreciate your prayers that a rash she has developed would clear up. The doctors used a bandage after Anya's bone marrow aspirate that she is allergic to and now she has a raised, itching red rash on her hip. We have been able to control the itching with Benadryl and Hydrocortisone cream but the rash has not gone away yet. Please pray that it would go away soon so that we do not need to give Anya the more powerful medicine, Atarax, which has a very unpleasant flavor. Thank you again for all of your prayers!

And a little child shall lead them...

A while back Anya said something that I intended to blog, but I got busy and didn't get around to it. Well, last night she said something else and it reminded me, so I thought I'd go ahead and tell both stories. These two stories relate moments that are hard to capture in words. I wish that all of you could see the strength and joy of this little child who brings us new hope and smiles each morning. Even now as I'm typing this she is snuggling up to me and kissing me. I cannot express what her love means to me. Okay, onto the stories!
A few weeks ago Anna and I were talking in the living room and Anya was playing a few feet away from us. We were talking about God and Anya's future, and Anna was reminded of the Hebrew children (Shadrach, Meschach, and Abednego) who made the awesome statement that they believed God could save them from the certain death of the fiery furnace, but that even if He didn't they would not bow down to the idol. In like spirit Anna said that she knew God could heal Anya, but even if He didn't she would still love and serve Him. We didn't know Anya was listening, but when Anna said this Anya looked up and said, "He will." We asked her, "He will what?" She answered simply, "He will heal me," and went back to playing.
Well, last night during our devotions I began weeping as we were singing. Anya tried to comfort me and Anna explained to her that sometimes I get overwhelmed by everything that's going on. Later Anya and I went for a walk down the street and were talking. When we were done we sat on the front step of the house and Anya asked, "Why were you crying daddy?" I said, "Well, sometimes I get sad at God for not doing the things I ask Him. Like healing you from luekemia." She said, "I don't get sad." I asked, "Why not?" She replied, "Because I know He's going to heal me...in His soon time." I started crying again and told her honestly that I wish I had her faith.
I don't know where Anya got the firm assurance that God would heal her of this disease, but I am seeking Him for the same level of trust. If it is His intention to heal her then I certainly want to pray in full confidence that He'll bring healing in His "soon time". Such a nebulous timeframe is not what I would want, but Anya seems to be content with it. Oh that we all had the faith to wait on God to do things in His "soon time". The Bible says that out of the mouths of babes and infants God has perfected praise. I used to wonder what that meant, but lately I've heard some perfect praise from my three year old daughter. May she lead us all to greater faith!

Initital Results

We received a phone call at 5pm from the nurse telling us that the initial results show that Anya's bone marrow is normal! Praise God! She expected that the final results would be back tomorrow and we are hoping for more good news.

We will post these results as soon as we get them.

Still Waiting

Anya's bone marrow aspirate was completed yesterday morning and she was released around lunchtime. The doctor thought we would hear some results yesterday afternoon but we never got a call so we are still waiting. Hopefully we will hear something this morning.

Israel was the one who took Anya yesterday and so he was able to talk with the doctor more. She seemed to think that there was a good chance that Anya's body was just taking longer to make the specific type of white blood cells that they are looking for because of the infection and the antibiotics. From his perspective it seemed like they are just taking the necessary precautions. Anya has been scheduled for chemo treatment next Tuesday with this hope that she is still in remission & will be ready to start next week.

We will post the results as soon as we know something.

Monday Results

We just received the results from the clinic visit today. Anya's blood counts still aren't high enough to start the second phase of chemo treatment. Therefore Anya is now scheduled for a bone marrow aspirate tomorrow morning to see if she has gone out of remission. Obviously this is very disturbing news for us. But we are fervently praying that either her blood counts are taking longer than usual to increase or that God would miraculously bring her back into remission before the test tomorrow. God, please heal our baby!

What a Week!

What a wonderful week we've had - playing with Anya, watching the two girls run around together, and seeing Anya enjoy some time void of medications and "pokes".

And while this has been a great week we're still desperately hoping to start chemo again on Tuesday. If her counts aren't up on Monday the doctors will have to do a bone marrow aspirate to check if Anya is still in remission. We'd appreciate your prayers for a good report on Monday.

Crafts

Here is a picture of Anya working on one of the crafts that a child from a church in Jasper, AR sent to her. The childrens' class teacher compiled presents from each of the children and wrapped them individually so that Anya would have presents to open for days & days! We are thankful to the teacher and the children who sent the presents! They have all been a hit!

Pictures

Here are a couple pictures of Esther & Isaiah. Esther will be two next month & Isaiah is almost four months. As I was preparing these pictures to post I was reminded how thankful I am for those who have given gifts to Esther, written her notes, & prayed for our family during this time. I know it has been difficult for Esther to see her sister sick and crying and to be away from her while she is at the hospital. Again thank you!

Chemo Postponed

Anya's nurse called yesterday to tell us that one area of Anya's counts weren't where they need to be in order to start chemo today. So we get to take the week off - and we plan to treasure it! Anya is still considered immunocompromised but she is able to go outside & visit the local park - she just can't go inside anywhere where there are a lot of people.

Next Monday we will visit the clinic again to repeat the blood tests. We really need for Anya's counts to be high enough to start chemo. This week will be a nice break but we need to start on the next phase of her treatment soon. And if her counts are not higher by Monday she will have to have another bone marrow aspirate to check to see if the leukemia has returned.

Clinic Visit

Israel and Anya left a bit ago to visit the clinic to have blood work done. The doctors are hoping that her counts will be high enough to start chemo tomorrow. If we are able to proceed, Anya will be going back to the hospital tomorrow (Tuesday) morning and will stay the night. She will also have to return to the clinic a couple times later this week for more chemo.

We covet your prayers for Anya - that she would be able to begin chemo, that she would not get another infection, that she would continue to feel well enough during this phase of chemo to play, and that God would give her comfort & joy through it all.

Home & Happy

After a week of negative blood cultures Anya was discharged from the hospital last night (Thursday) just before bedtime. It was so wonderful to see her walk into the house on her own two feet, smiling and hugging her grandparents. She is VERY happy to be home. She is playing with Esther, laughing, opening presents that people have sent and enjoying a small stretch of time where she is not on any medication. We are cherishing these moments as well as we know that it will not last forever.
As Anna explained in a previous post we completed the first phase of treatment (Induction) but the second phase (Consolidation) was postponed because of the bacterial and viral infections that landed Anya back in the hospital for the past week and a half. Now that both infections are cleared up we are just waiting for Anya's blood levels to get up within the parameters to begin the Consolidation phase. On Monday we go to the clinic for a blood draw. If all is well we'll go back in Tuesday to spend the night for Anya to get a spinal tap and recieve chemo through the IV.
Anya will recieve heavy doses of chemo and multiple spinal taps in the next two months, however she won't recieve steroids. She will spend a lot of time at the clinic and some nights in the hospital as she recieves the chemo and will have to have her port accessed multiple times for various procedures. This is very frightening for Anya because to access the port they push a large needle into her chest and then tape a contraption onto her chest that they can draw blood and give medicine through. Anya hates having this contraption put onto her, but once it is she becomes very attached and freaks out when the time comes to remove it. Although she had become very comfortable with the nurses during this last hospital stay the removal of the exterior port access was very traumatic for her. In addition to Anya not liking the various procedures she will be less energetic and much more susceptible to sickness the next few months as the chemo does its work. We are curious to see how she will react emotionally without the steroids. Even now, while she is off the meds and happy most of the time she is still emotionally fragile, has her feelings hurt easily, lonely if not given constant attention, self-conscious about her physical appearance, and very protective of the various parts of her body that were poked and prodded during this last hospital visit.
Of course we appreciate and covet your prayers for Anya's complete healing. We also would appreciate your prayers for Anya to continue to grow in confidence and comfort with the doctors and nurses and the various procedures they perform. Most of them are not painful, but many of them frighten her and naturally she does not enjoy being couped up in a hospital bed. We also need your prayers that Anya would not get another infection. Anytime she gets a fever, cough, etc. she has to go to the hospital and the cancer treatment is put on hold until the infection is completely gone. They have told us that if she gets another infection in the port they will be forced to remove it. These delays in treatment are very difficult for all of us and prolong our time away from home (Kansas City) and the time of Anya's recovery.
Thank you again for all of the gifts, cards, and support you have sent us throughout this ordeal. While Anya was on the steroids she was so emotionally distraught that she was hardly ever interested in playing with the growing stack of toys in her room. Now that she is home and happy she is starting to open presents and get very excited to play with all of the neat stuff she has recieved. It means so much to us to see her happy and we thank you for the part you've played in bringing joy to this little girl's heart. In the next few days we'll try to post some pics of Anya playing and laughing with her siblings. We love and appreciate you all.

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? :)

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.

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!)

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!

Remission!

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.

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.

Overwhelmed!

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

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!)

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.'"

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.

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!

Not Without Hope

For a small time today Anya was happy; she really enjoyed her visit from Grandma Sheryl & Isaiah. It was beautiful to see the way she smiled at him and the way he returned her smiles. She loved having him sit on her bed and holding his hand. It made me wish he could stay all night! And Anya loved having Grandma Sheryl read a Dr. Suess book or two.

As they were leaving, Dr. Kitchen and her assistants came to the room. Dr. Kitchen was pleased with Anya's progress. The plan is still on to have the bone marrow aspirate on Monday and to release her afterward, if everything goes okay. She was also alright with Anya's enormous appetite; she just wanted Anya to limit the sugar and salt intake for obvious reasons.

This morning I saw several strands of Anya's hair on the pillow. We had thought this wouldn't start yet but after speaking with the doctor we are now prepared for her hair to start coming out more at any time. It may sound trite but as I sit here and try to think about what to say, I realize I can't really describe the way the hair loss makes me feel or how Anya will feel once she experiences it. But again I just choose to trust God that He will sustain us through this part of the consequences of leukemia.

And I would like to thank Cara, Anya's friend from Virginia, for donating her hair to Locks of Love in honor of Anya. Cara was not able to dontate it for Anya specifically but I am so thankful that another little girl or boy will be able to have a wig because of Cara's unselfishness and compassion. The world would be a better place if there were more little Cara's out there.

On another note, I just got off the phone with an old, dear friend of mine. And through the course of our conversation she said something to the effect of, "It sounds like you are doing good...unless you're just covering something." And with this I was reminded again that I still have joy because I am not without hope! While I am exhausted and sorrowful for Anya...I am not without hope! I believe God is answering your prayers!

God has brought us through the miscarriage of our precious baby, Naum, and brought Israel through the loss of his father and brother many years ago. And I've had the privledge of watching God uphold another dear friend who lost her baby, Evan. And through these things God has been faithful; and though I do not fear that Anya will die I am confident that He will be faithful again through this long journey of treatment. I know that He is holding me and my daughter in His hand. He will be faithful to bring us all through this stronger and Anya will be more beautiful, more refined. Like my friend said, "It is not God's way" to do otherwise. From the depth of my heart I cry, "I trust you Lord...I trust you to uphold me, my daugther, my husband, and my family. I trust you to take care of us, to provide for our needs, and to use this for your glory."

In closing I wanted to share an old hymn, "Come Thou Fount of Every Blessing":

Come thou fount of every blessing
Tune my heart to sing thy grace
Streams of mercy never ceasing
Call for songs of loudest praise

Teach me some melodious sonnet
Sung by flaming tongues above
Praise His name, I'm fixed upon it
Name of God's redeeming love

Hither to thy love has blessed me
Thou has brought me to this place
And I know thy hand will bring me
Safely home by thy good grace

Jesus sought me when a stranger
Wandering from the throne of God
He to rescue me from danger
Bought me with His precious blood

Oh to grace how great a debtor
Daily I'm constrained to be
Let thy goodness like a fetter
Bind my wandering heart to thee

Prone to wander, Lord I feel it
Prone to leave the God I love
Here's my heart oh take and seal it
Seal it for thy courts above

Smiles Make My Day

Anya had a very good day yesterday. She woke up smiling and even played with some toys and colored in bed! I can't explain what this does for me - it made my whole day! The rash is clearing and the doctor was pleased with her progress. However because the rash is not more cleared the doctor has asked that she stay in the hospital until Monday, after the bone marrow aspirate. This gives us more time to get the house cleaned & organized but I am sorry for Anya who is ready to be home with her family and for all of us who would like to be with her at the house.

Last night Isaiah was feeling better so I brought him to Anya's room for a few minutes. She was so happy to see him; she couldn't quit smiling. But when it was time for him to leave she was heartbroken. By that time she was exhausted and very ready for bed. But the nurse still needed to do a few things (including bringing her medicine) so it was a difficult couple of hours.

Anya was awakened this morning to a nurse coming in to get her blood. She was very upset and has been upset ever since. She has an incessant appetite because of the steroids and doesn't have the patience for food to arrive. And she can't stop crying because she is worried about the nurses who are going to come in soon. I am hoping that she will be able to get back to sleep shortly so she can get the rest she needs to feel better.

Please pray for the bone marrow aspirate test on Monday - it is important that we find the leukemia cells have responded to treatment. We are hoping with Dr. Kitchen, Anya's oncologist, to find less than 5% leukemia cells. We are also asking God to give Anya peace, joy, and comfort in the midst of her discomfort and fear. And we are praying that Anya will be able to come home on Monday, instead of the date being pushed back again.

Bread of Life & Living Water

We had really hoped that Anya would be able to come home today or tomorrow but the doctor is now saying perhaps Saturday. She was pleased to see that Anya's rashes are clearing but we must see them get more under control before our "beany" can go home.

Anya has been in a cheery mood more often; praise the Lord! She had another blood transfusion yesterday and her body responded very well; praise the Lord! Her blood sugar was high but the doctors discovered that everything was okay and have made the necessary changes; praise the Lord! Her rash is clearing so the dermatologist didn't have to do a biopsy, as expected; praise the Lord! We are now able to start preparing Anya's room for her return home (to my parents' house); praise the Lord!

Reflecting on my day I realize that I got many things accomplished but I neglected to have time solely devoted to being with God, reading His Word. So I am thankful that tomorrow is another day; another day to cherish my children and my husband and to devote time to feasting on the true Bread of Life and the Living Water.

"Jesus answered, 'Everyone who drinks this water (from the well) will be thirsty again, but whoever drinks the water I give him will never thirst. Indeed, the water I give him will become in him a spring of water welling up to eternal life.'" (John 4:13, 14)

"Then Jesus declared, 'I am the Bread of Life. He who comes to me will never go hungry, and he who believes in Me will never be thirsty...I am the living bread that came down from heaven. If anyone eats of this bread, he will live forever. This bread is my flesh, which I will give for the life of the world.'" (John 6:35, 51)

Another Pic

Everyone liked the other picture that I posted so I thought I'd include another of Anya with her sister, Esther. Anya sure loves little Esther; I'm excited for when she gets to go home and see her again.

Also people have asked for specific ways to help and so I'll go ahead and list another need here. When Israel brought us up to visit my family the plan was that he was going to drop us off and then we would fly home after a week. So we decided to borrow car seats from my brother so that we wouldn't have to take the extra seats on the plane. However now that our stay is extended we really need our own car seats for the kids - especially since my brother's family has moved into their own place. Of course, we will get the car seats from KC eventually but even then it will be nice to have two seats for Anya & Esther since the childcare will be distributed between my parents and Israel & I and for late night or last minute trips to the hospital we won't want to worry about car seats.

So I've looked online for affordable seats for the kids and this is what I've found:

Babies R Us - both styles are on sale right now
Anya: Evenflo Chase Booster Dylan ($29.90) http://www.toysrus.com/product/index.jsp?productId=2476612&cp=2255983.2256187.2256193&pg=1&searchSort=TRUE&s=A-StorePrice-TRUS&parentPage=family
Esther: Graco Comfort Sport Convertible Carseat ($69.99) http://www.toysrus.com/product/index.jsp?productId=2437597&cp=2255983.2256187.2256196&pg=1&searchSort=TRUE&s=A-StorePrice-TRUS&parentPage=family

We love and appreciate you all!

Rashes, please pray

Anya awoke in the night and woke up this morning complaining of the "burning" sensation from the rash on her right upper thigh. We are trying to keep up with it with Benadryl but she is still VERY uncomfortable. She also has a rash all over her belly and lower back and perhaps another kind of rash on her hands and down her arm. The rash on her belly doesn't seem to bother her but the rash on her hands itches. The oncologist is going to ask dermatology to come look at the rashes to diagnose.

Please pray for relief from the burning, itching and for healing for the rashes. On top of the pain and discomfort it is hard for her when all the doctors come in to touch and look at her to treat the rashes. And she is not able to get home until they get the rashes under control.

Anya is also extremely emotional and sensitive as a result of the pain and the steroid drugs. She gets really upset easily and is hard to console. Please pray for peace and strength for both of us.

And thank you to those of you who mailed DVDs; they are really helping to distract her from everything here at the hospital.

Angelina, our pet pig

Today was a good day for Anya - she was awake most of the day, was able to walk about 10 feet with assistance, reduced swelling, had a normal temp, and didn't have any new procedures or "pokes". It was encouraging for me to see her feed herself pizza and smile a few times. She even let me in on the running joke she has with Israel - that there is a pig, named Angelina, who likes to roll in the mud and is currently staying in the hospital's shower...nice to see her being an imaginative, playful kid again if only for a few minutes.

This evening brought more difficulty as it was nearing bedtime. The rash on her hip began to bother her very badly. She couldn't get comfortable and she spent at least an hour and a half trying to fall asleep. And she kept repeating, "All I can think about is the creme (the medicene they use for her rash) and Esther" while crying. I thought maybe a picture of Esther would help but when I showed it to her she only cried more and said that it made her miss Esther more.

I spoke with the doctor this afternoon and she confirmed that Anya still had leukemia blasts in her marrow as of the test yesterday and so she would have another bone marrow aspirate on Monday to check for more progress. The doctors are hoping that she will be in remission (in the technical sense) by the end of the month but they will continue chemo and other treatment for the next few years (or the leukemia would return).

The doctor also said that she hoped Anya could go home to my parents' house on Thursday or Friday so she could be more comfortable. Of course Anya would have to return on Monday for the test but if all goes well she could return home after that as well.

Thank you all again for your prayers, cards, gifts, and meals...they are very much appreciated! And for those of you who have offered support but we have not taken you up on your offers yet: please keep offering and know that we appreciate you and fully intend to accept your help in the future. We just realize that this is going to be a very long road and we are trying to conserve resources. The doctors expect things to be very intense for at least the next month or so and then to be semi intense for the next 6-9 months so we will need you for the long haul.

Be thou my vision

This has been an eventful and exhausting weekend here at the hospital where I have been since Friday morning. Anna got you up to speed on Saturday. I had hoped to make a post Saturday night but the wireless access in the room wasn't working. Anya began developing a rash on Sunday on her buttocks and right hip. Initially the doctors thought it was a heat rash from laying on that spot too much but as it has spread over her belly, back, groin and thighs they now believe that it is possibly a reaction to one of the antibiotics they are giving her. Please pray that she would be relieved of the itching and burning sensation from the rash and that they would determine its cause. Anya slept well last night; much better than me. I was unable to sleep past 3:00am so I've had about eight hours of sleep since Friday morning. Attempts at napping during Anya's naps today have been unsuccesful. Please pray that I would be able to sleep well tonight and wake up tomorrow refreshed.

As Anna mentioned today Anya had a spinal tap, bone marrow aspirate, and "permanent" port placed in her chest. The port placement was successful and now Anya will recieve IV's and have blood drawn from a single central line with only one "poke" per hospital visit. This central line remains in her, under the skin on the center of her chest, throughout the course of her treatment. Initial test results on the bone marrow aspirate indicate that there are still leukemia blasts in the bone marrow. Best case scenario would have been that there were no visible blasts today, but the doctor is not surprised at Anya's test results because the amount of swelling in Anya's liver and spleen last week indicated a large number of leukemia blasts. Due to these bone marrow test results Anya will need another bone marrow aspirate next Monday, which means she will not be released that day. I have not been told when they expect to release her. Anya's moods continue to swing severely. One moment she will be joking with me and the next she will be crying out about missing Esther or her rash. The "emotional roller-coaster" is wearing me down and I need God's strength to stand strong through this. I am able to provide Anya with gentle care but I am becoming irritable with the nurses, certain situations that arise, and any noise from outside the room that interferes with Anya or I sleeping. I need patience, and I need it right now! The doctor's main hopes for Anya right now are that she will have a bowel movement, get rest, and move around in the room a little bit.


In the midst of all this God continues to speak gently to me through my pain and exhaustion. There is one CD that I play frequently for Anya to fall asleep and one of the songs is the hymn Be Thou My Vision. God has spoken powerfully to me through the words of this song. May they be an encouragement to you as we seek to keep our eyes focused on Jesus regardless of our circumstances. May He be our vision, no matter what we see.

Be thou my vision, O Lord of my heart
Naught be all else to me save that thou art
Thou my best thought by day or by night
Waking or sleeping thy presence my light.

Be thou my wisdom, thou my true word
I ever with thee, thou with me, Lord
Thou my great Father, I thy true Son
Thou in me dwelling, and I with thee one.

Be thou my battle shield, sword for the fight
Be thou my dignity, thou my delight
Thou my soul's shelter, thou my high tower
Raise thou me heavenward, O power of my power.

Riches I heed not, nor man's empty praise
Thou mine inheritance, now and always
Thou and thou only, first in my heart
High King of heaven, my treasure thou art.

High King of heaven, after victory won
May I reach heaven's joys, O bright heaven's sun
Heart of my own heart, whatever befall
Still be my vision, O ruler of all.

Ruler of the Waves

Israel planned to get online sometime today to give an update but he is still at the hospital with Anya and hasn't had much of a break. There are still six of us in my parents' house who are sick, including myself, so I am not able to relieve him.

Anya had a very difficult night last night. It started when the nurse changed the dressing on her pic line as it has been a constant source of pain for her. Then after a series of events, at 3am the doctor decided the pic needed to be removed and ordered a sonogram of her leg to check for a blood clot. Fortunately the sonogram revealed that there was no blood clot but as a result of the above, overall she (& Israel) got very little sleep.

Israel also reported that Anya had some good moments today - she was even able to joke with a nurse! But she was also having very dramatic mood swings - one moment joking and the next weeping. We were told this could be a side effect of the steroids.

Tomorrow is going to be a big day for Anya...she will be sedated for a spinal tap, a bone marrow aspirate, and to get a port placed in her chest. We are petitioning God for all of this to go well.

A friend encouraged me with Ps 89:8-9 "O Lord God of hosts, Who is mighty like You O Lord? Your faithfulness also surrounds You. You rule the raging of the sea; when its waves rise You still them." It is good to know that we serve the God who rules the waves and the sea for it gives me confidence that He is in control of the waves in my life and the life of my family.