Anya's Battle

Treatment Complete!

2010-01-01T14:27:00.003-05:00

It is strange that sometimes in life those things that seem most simple turn out to be the most difficult. Over the course of the past year as I looked forward to the day when Anya's treatment would end I always anticipated that it would be the easiest post to make on this blog. It turns out that it has been one of the most daunting. As a result it's now been several months since our last update here. It is difficult to explain why this is. All I can say is that I have been unable to find the right words to express our thoughts and feelings about what has happened in the past three months. I doubt that even now I can say what ought to be said in light of all that God has brought us through since Anya's diagnosis. But alas, a new year is upon us and I can only tell my wife, "Yeah, I'll post on the blog..." so many times. So, forgive me if I lack the words to describe what these events have meant to us, but at least I can bring everyone up to date on what has transpired since our last post.
Anya's last scheduled treatment at the clinic was in the end of October and what should have been a fairly routine appointment turned into an incredibly difficult morning as her port did not cooperate and the nurse had to draw blood from the back of her hand. Anya was terrified and cried loudly and pathetically throughout the blood draw. I held her and broke down inwardly. It seemed that my fears were materializing before my eyes...Anya's post-treatment monthly blood draws could prove more traumatic to her than the monthly treatments she had recieved via the port. I was unable to hold back tears when I strapped her in the carseat on the way home and she asked me why the pokes were harder than her treatment. I wept with her and couldn't find the words that would encourage either of us. Inside I cried out to God.

Our next trip to the clinic was a few days later for the removal of Anya's port. The procedure went very well and we returned home, taking the rest of the day to let her rest and recuperate after her surgery. But again we had experienced her fear at the prospect of being poked. We continued to pray and hope that over time she would adjust to the monthly blood draws.

We prepped Anya mentally and emotionally as much as possible before her first follow-up appointment. But with the experience of her most recent poke fresh in my memory I had little hope that this appointment would be better. But by God's grace and Anya's courage it ended up being wonderful! As I reported to Anna when we got home Anya did not even cry during the blood draw...and as Anya added, "I didn't even make a sad face!" Her counts were great and her physcial exam showed her to be in excellent health. Tears of sadness from the month before transformed to tears of joy as I thanked God for relieving Anya's fears and pain.

Words cannot express the joy, the relief, and the gratitude in our hearts to the Lord for His healing of Anya, our appreciation to the medical staff that have been loving instruments in His hands, and our love for all of you who have supported us throughout this chapter of our lives. As Anya's treatment has come to a close it is all a little surreal to look back on.

We celebrated the end of Anya's treatment with two "port-removal parties", one here in Kansas City with our church family, and one in Indianapolis with Anna's extended family. While in Indiana Anna brought out a photobook she had made that showed Anya in the various stages of treatment. I was overwhelmed by her frailty in the beginning, the drastic effects of the steroids, the physcial toll that everything took on her. It seemed like snapshots from a different life; a distant, strange life that we no longer lived. In the world we live in today Anya is so healthy, so happy, so full of LIFE...

Anya recently went back in to the clinic for her latest scheduled monthly follow-up appointment. Another blood draw, with no crying (not even a bad face!) and another excellent physical exam. Anya is now on only one medicine, a preventative antibiotic given to post-treatment patients to ward off opportunistic pneumonia that likes to strike at this point in the process. Through it all Anya continues to be one of the healthiest ones in the family.

She will continue to have monthly appointments for blood draws and physical exams for a while, and will eventually be transitioned from the hospital clinic to a "late-effects" clinic where she will have occasional appointments to watch for any future complications caused by the cancer. We continue to pray and hope for a healthy future for Anya, with no "late effects".

Life goes on here in the Steinmetz house, and thankfully relatively little of it is focused on Anya's health condition. Samantha is rolling over and trying desparately to sit up, Isaiah is putting multiple words together...a big victory in his efforts to overcome speech delays, and Anya and Esther continue to amaze and entertain with the things they say and the unique view they have of life. My wife remains the solid, steady, amazing woman that God knew our family needed to make it through the past three years. For my part I'm continuing to seek God for healing, for hope, and for wholeness, facing a deep pain and brokeness that requires His gentle, patient care.

We may make one final post on this blog to officially sign off and share our parting thoughts. For now, know that we have been forever blessed and touched by your love and we feel privileged to have shared this journey with you.

Israel

September Appointment & Good News!

2009-09-18T18:28:00.011-04:00

This morning Israel took Anya to her September appointment for chemo and the preventative antibiotic. Today her port cooperated and she didn't have to have a spinal tap or other painful treatment - so in that regard, it was a great day!

The only difficult part of her visit was how completely hectic and busy it was there. Anya was originally put in a room to have her port accessed for treatment, where she & Israel were settled watching a movie. But because of the excess of patients she had to be relocated to the playroom. This may not seem like a big deal (or it may even seem like a good break) but it was overwhelming for Anya to be with over 10 other sick patients, their beeping IVs, and their families when she's not feeling her best. Guess ya gotta take the good with the bad. BUT we were so pleased to comfort her (and ourselves) with the fact that she only has to return there for chemo treatment ONE MORE TIME!

Because we are so close to the completion of chemo treatment, Anya's nurse educated Israel on Anya's future care. Here is some of the information they received:

Anya has her final IV chemo and preventative antibiotic on Oct 16th

Oct 23rd will be her LAST DAY of oral chemotherapy

Surgery for her port removal will be scheduled at her Oct 16th visit

After that she will take an antibiotic 2x daily, 2 days a week for five months to prevent infections that often occur when patients discontinue therapy

6-7 months after she discontinues chemo treatment, she may have a major growth spurt because oftentimes the chemo prevents normal physical growth

Although Anya's last chemo treatment is next month, she will return to the clinic once every month for the next year (and every other month for a year after that) for blood work. Her doctor needs to check her blood often to confirm that she has normal levels of various components in her blood since abnormal results could mean relapse.

AND after that she will have checkups at the "Survive and Thrive" clinic where they will monitor her for possible "late effects" of cancer treatment and provide important resources for her special needs as a survivor. We're not sure how often or for how long she will have checkups there but we'll cross that bridge when we get there.

65% of childhood cancer survivors will experience at least one late effect of treatment, but we're hopeful that Anya will be spared this additional trauma. Type of treatment, age, and gender all play major roles in a patient's risk for late effects and based on these risk factors, I would guess that she is at a lower risk risk based on her particular situation and treatment. A couple of the medications she has taken are known to cause certain health conditions, so we do pray for God's mercy and healing touch on her little body - we ask for complete health!

Obviously we're really excited that Anya's chemo treatment is coming to a close. She's such a happy child now, who often feels really well and we can't wait until she's back to 100%!

At this point, Anya is still somewhat nervous about the upcoming changes. She's worried about the "pokes" she'll have to receive every month for blood work since she won't have a port anymore. And the idea of having a surgery (for her port to be removed) has caused her some anxiety. But we trust that as treatment discontinues, and she starts to feel stronger and healthier and as the "pokes" become more routine that she'll be thrilled to be finished.

Hip, hip, hooray....only one more month!!!!

August Appointment

2009-08-21T17:03:00.003-04:00

Today was Anya's August appointment which included a spinal tap to put chemo in her nervous system and regular IV chemo and preventative antibiotic.

We had intended for Israel to take her, but he has been suffering with an infection and though he shouldn't be contagious anymore, we didn't feel comfortable taking any chances of infecting any of those poor little kiddos with decreased immunity. So Samantha, Anya, and I got dressed and out the door by 8 so we could make it to Children's Mercy on time for Anya's appointment. (Super mommy to the rescue!) :)

Overall things went very smoothly - Anya was pretty upbeat before the spinal tap, her port cooperated, and the doctor said that she looked great. Unfortunately she was feeling pain again during the spinal tap - which isn't supposed to happen because they give her "sleepy medicine" - but I comforted myself with the fact that THIS IS THE LAST TIME WE HAVE TO DO THIS! It is so hard for me to watch her suffer...to feel so helpless to make things better so this reality is so exciting for me!

The other good news is that the doctors also give her a medication that doesn't allow her to remember the pain during the procedure, so if you asked her how the spinal tap went she would probably tell you "great!". Gotta love that medicine!

And I'd also like to "give a shout out" to the child life specialist at CM. She came in during the procedure today, and was such a big help - especially since I had Samantha there with me. She stroked Anya's head, spoke sweetly to her, and read a book to her that we had brought from home to make things as easy as possible on my baby. Thank you Jesus, for such loving people!

Family News

2009-08-05T19:05:00.004-04:00

On Friday, July 31st, we welcomed baby Samantha Grace to the world! She was 8 lbs, 3 oz and only 18.25 inches...so she is a sweet little chunker. Wish we could show her off to you in person! Anya, Esther & Isaiah all love her to pieces...so fun watching them with her. Thank you, Jesus, for this precious gift!

And on another lesser note, we are in the process of buying our first home! It is only 3-5 minutes from our current house, but it is a little bigger and we are excited for this change! We'll be sure to post pictures after we close in three weeks.

July Happenings

2009-08-05T18:43:00.004-04:00

July's appointment was just over two weeks ago now, and things went well. While Anya's port wasn't very cooperative, she wasn't in much discomfort and was in good spirits for most of the visit. As usual she received chemo and a preventative antibiotic through her port. And the nurse confirmed that we are still on schedule to discontinue treatment in October - so only a few more months to go!

June Appointment

2009-06-05T15:57:00.003-04:00

What a morning! Anya's monthly appointment was scheduled for this morning at 8:30am. She received her antibiotic and chemo through her port and had a spinal tap to get chemo in her nervous system. Despite the fact that she wasn't allowed to have any food or fluids since last night, things went very smoothly until the spinal tap.

Before the spinal tap the nurse administered "sleepy medicine" which is supposed to be a pain killer, sleep inducer, and temporary memory eraser - all in one! Things were going well at first, Anya started to get sleepy and lay down but as the procedure started she was roused a bit more, and obviously was experiencing pain.

When the doctor first stuck in the needle (similar to an epidural needle, if you are familiar with those) Anya tensed up a bit. This made it more difficult for him to find the proper placement which made the procedure take more time and cause more discomfort. She started crying, and tears welled in her eyes, and fell down her cheeks.

There are few things that hurt a mother more than seeing their child suffer...it broke my heart. Those are the times when everything in you wants to start crying, but of course the best way to support your baby is to stay strong, and give loving gentle support.

Thankfully that was all over in about 10 minutes, and she was able to rest. She wasn't ever able to fall asleep, to "sleep off" the effects of the medication, but she did enjoy a couple episodes of "Sponge Bob" and her favorite treat - chicken noodle soup. So glad we only have one more of these type of months before treatment is over!

May Happenings

2009-05-25T16:59:00.006-04:00

Anya's May appointment was a couple weeks ago, and things went very smoothly. Immediately after her appointment, the kids and I drove up to visit my family to celebrate both of my brothers' college graduations. Adam graduated from UT with a degree in Computer Science, and Alan graduated from Case Western with a degree in Computer Science and Psychology. I am so proud of both of them for all of their hard work!!

And this weekend, Israel and I are celebrating seven years of marriage! What a full seven years it has been!

On Saturday, Israel surprised me with an overnight trip to St. Louis. We had a great time going up in St. Louis Arch and to a couple other local attractions! And today, we celebrated Memorial Day and our anniversary with the kids with a visit to Union Station here in KC which included time in the Kids Science Center and a 3-D movie. What a great weekend!

Passover

2009-04-16T13:51:00.002-04:00

Here is a picture taken of our family last Wednesday after our annual Passover Meal. In place of a traditional Easter celebration, we celebrate the Lord's death and resurrection on Passover each year. It is a very special time for us to remember the bitterness of sin and our gratitude to Jesus for His deliverance as the Passover Lamb. Thank you Lord for your sacrifice!

April Steroids

2009-04-16T13:48:00.002-04:00

The good news is that we've mostly recovered since the time of my last post! And the other good news is that Anya is done with her April steroids. She was feeling exceptionally well on the Saturday she took them, so we were able to attend church as a family and have guests over Saturday night. By Sunday morning she was feeling pretty rotten, but thankfully that is all just a memory. One more month done, only five more to go! Whoo-hoo!

2009-03-25T19:34:00.003-04:00

As I write, the rest of the family is vegging in front of the TV because everyone is sick. Esther & Isaiah seem to be on the upswing, but Anya and Israel are both miserable.

In brief:

The specialist didn't find any fluid in Anya's lungs
Anya has developed infection in her eyes so she has been prescribed antibiotic eye drops
Anya continues to take Tylenol and prescription cough medicine for her other symptoms
Anya continues to have a fever so she has not been released to continue her chemo

Anya seems to be feeling the worst she has felt for at least several months. She just lies around crying, sleeping, or even at times babbling nonsense. We're hoping she starts feeling better quickly!

Clinic Initial Results

2009-03-23T15:28:00.003-04:00

Fortunately, Anya was able to return home after her appointment this morning. Her lab work showed that her ANC has dropped since her last visit a week ago, but it is still in the safe range - praise the Lord! And the radiologist inspected her xrays, and said that it looks like there is no fluid in her lungs - yeah!

There is still a chance that Anya would have to return to the hospital sometime in the next few days if one of the following happens:

If the doctor who is also going to review Anya's xrays finds something that the radiologist missed.
If the doctors find that something is growing in the cultures they took this morning anytime within the next 72 hours.

Obviously we are glad that Anya didn't have to stay in the hospital, but we are still praying that she would get well quickly. She is pretty sad and miserable, the poor thing.

Esther also visited the doctor this morning, and was prescribed an antibiotic for her eyes because she has some type of infection in them. The doctor thinks that it is just whatever virus that is causing the rest of her symptoms but wants to treat it just in case because she is so uncomfortable.

Life is never boring with three kids, is it?!

Visit to the Clinic

2009-03-23T10:03:00.002-04:00

For a few days, Anya has had a little cough but yesterday afternoon she developed a fever, sore throat, heavy chest, and body aches. Esther, Isaiah, and I have also been feeling under the weather but because Anya is on chemo which can decrease her ability to fight infection, she has to make a trip to the clinic this morning for blood work and a chest x-ray. They are hoping to find that her white blood cell count is high enough to fight the virus and that there is no fluid in her lungs.

I'm not really sure what will happen if they do find fluid in her lungs, but she is worried that if they do, she will have to have more breathing treatments. When Anya was originally admitted to the hospital, she was very sick and simply terrified of everything that was happening to her. There were many things that were painful and extremely uncomfortable, but for some reason she has attached a lot of the memories of pain and discomfort to the breathing treatments. Whenever we talk about her first time in the hospital, she mentions how terrible those treatments were even though in and of themselves they aren't that terrible. But because she remembers them being so awful, we are praying that there would not be fluid in her lungs and that she wouldn't need breathing treatments.

Rash Update

2009-03-18T13:25:00.002-04:00

Anya's rash has now worsened and become pretty itchy. There are times when she just cries because it itches her so badly. The doctors suggested that we try Benadryl, and it seems to help - especially when we use the higher end of the allowed dosage.

While getting dressed for the day yesterday morning, Anya asked if I could put her hair in pigtails. After I finished, she asked to look in a mirror and for the first time saw the rash covering her nose and cheeks. In a frustrated tone she said, "I look ridiculous with this rash on my face!" As a mom, of course, I tried to reassure that she was beautiful and that the rash didn't distract from that.

Later I shared the experience with Israel and he said that she had also asked him if she still looked pretty with the rash on her face. Of course, he reassured her as well but was now realizing our need to try and use this and similar experiences to teach her that there are times when our external appearance is affected by things like sickness or tragedies, but that we need to keep such things in perspective because our physical appearance is really such a small part of who we are and what we are supposed to be. I was so thankful for that realization!

So later as Anya and I were laying down for an afternoon nap, I took the opportunity to discuss the values of external and internal beauty and how it directly applied to her situation. I reaffirmed that she was a beautiful girl, but that we needed not to be so focused on external appearance knowing that life experiences may negatively affect the way other people think we look but that what is most important is what is in our heart. And I had to take the opportunity to apologize for being inappropriately concerned with some of the physical changes that come with pregnancy and aging and told her that I would try to be a better example in the future. Wow, what a lot to try to explain to a little five year old girl. But I think she got it, and I'm thankful Israel saw this important opportunity!

Monday Lab Work

2009-03-18T13:17:00.003-04:00

On Sunday, we discovered a rash developing under Anya's arm on her rib cage. She was only slightly itchy so we decided to wait to report it to her doctor on Monday, during her scheduled follow-up lab work.

Once we arrived at the clinic on Monday, in order to protect the other children, Anya was placed in an isolation room and wasn't allowed to go into the playroom. And as a mom who is sometimes on the other side of the fence - I was very grateful!

After the nurse inspected Anya and the lab results came back, the nurse told us that the rash was probably a viral thing and that it was probably what caused the abnormal spike in her enzyme levels last week. They also said that her enzyme levels were now much closer to normal (only slightly elevated). All of the other numbers they check were in a safe range, so the doctors told us to put Anya back on her daily chemo meds.

March Appointment

2009-03-12T15:57:00.002-04:00

Last Friday was Anya's scheduled monthly appointment. Most of the morning before she arrived in the procedure room, she was crying because she wasn't able to eat and was tired. But thankfully she was able to fall back to sleep after she & Israel got settled in the room, and woke up feeling much better after everything was finished. And by the time she got home, she was cheerful!

Later that day we received a call from Joy, Anya's nurse. Apparently Anya's liver enzyme level was elevated which means that her liver was fighting to clear something out (which probably explains why she had been so tired the couple days previous). According to the doctor it was most likely trying to clear out whatever virus she had in the last month or so.

Because her daily chemo is filtered through her liver and the doctors don't wish to work her liver more than necessary, they asked us to discontinue her daily chemo medication (while continuing her five days of steroids). They also asked us to bring Anya back in on Monday the 16th for more lab work so they can check to see if her levels have returned to normal, and to see if they can detect a virus that may have caused the problem.

Anya completed her five days of steroids on Wednesday morning, praise the Lord! Some rounds of steroids are harder than others, and I would say that this one was more difficult than some. She was up through the night unable to sleep three different nights - poor thing! One morning she even apologized for having to wake me up in the night - what a sweet princess!

Wednesday was the first night in as long as I can remember that she didn't have to take medication. I must admit that it was kind of nice. Of course, in the big picture, we want her to be able to take as much chemo as possible to make sure that the leukemia does not return. But in the short term, the break was great! So we'll enjoy these few days of medicine free living as much as possible!

Counts Back Up!

2009-02-09T16:10:00.004-05:00

Anya's February appointment was Friday at 9:30am. She received intravenous chemo, a preventative antibiotic, and had lab work. The lab results were great! Anya's counts are back up, and the doctor has allowed her to go back onto her full prescription of chemo! Praise God!

Of course since her appointment was Friday, Anya also started her steroids on Friday. I usually prefer to keep her home from church while on steroids but Anya was persistent that she wanted to go to church...so we did. How can I say "no" to a child begging to go to church?

Overall she did really well there, though during the singing she had to lie down and she was pretty fussy and uncomfortable for the rest of the service. I offered several times to take her home, but she didn't want to go so we just toughed it out.

On Sunday afternoon Israel was able to take Anya to a friend's house to play since her counts have gone back up. But she was so tired and sensitive that I don't think she had as great a time as we had hoped. When she isn't feeling well noise and light can really bother her.

So both yesterday and today, for the most part she has wanted to rest, watch TV (more specifically "Little House on the Prairie"), eat the usual salty fatty foods, and read books. Poor thing, for her sake, I can't wait till we're done with steroids!

Counts Back Down

2009-01-24T17:44:00.003-05:00

Israel took Anya to the clinic on Friday morning for her follow-up lab work. Unfortunately her ANC is back down (.628 or 628) and so again she is susceptible to infection.

She has a little cold right now, and we are thankful that it has not developed into something worse. She has no fever, but if that were to change we have to call the doctors immediately so that they can determine if she needs additional medical care.

The bummer about all of this is that we have to be real cautious with where we take Anya and who she is around. We allowed her to go to church today, but she wasn't able to play with the other children or mingle around with people. During the greeting time, she had to stay in her seat and it broke her little heart...this of course, breaks ours.

And we were supposed to have people over this evening for a Young Adult Meeting, including a couple kids, but we had to change the location of the meeting since Anya shouldn't be around a lot of people. Again...bummer.

The good news is that her other counts are within the acceptable range, so we don't have to fear relapse. Her low ANC is a result of her body trying to fight off all of the seasonal colds and other infections that come around. She is still on a half dose of the chemo and will be reevaluated on Feb 6 to make sure that the ANC count is recovering, or at the very least staying above .500. Thanks again for all your prayers! And please continue to pray that her counts would be high enough that she would be able to play freely with other kids and spend time with the folks that she cares so much about.

Good news!

2009-01-15T17:45:00.003-05:00

Anya went in for bloodwork this morning and her ANC has gone back up into the normal range, confirming the doctors' suspicion that the problem was simply lowered counts as a result of fighting off infections, and nothing more serious.
We start Anya back on her chemo this week at about half the dosage and will have another appointment next week to make sure she is ready to go back to full strength. Her color and energy have returned throughout the week (she was looking pretty pale and fatigued over the weekend) and she is happy to be off of the steroids until next month.
We are so thankful for all the prayers and support this week. We are also again thankful to God that this delay was so short. So many children suffering from leukemia spend weeks at a time in the hospital with infections while their treatment is delayed. This week-long break in the treatment is the first delay we've experienced since we returned home in April and we were able to spend it at home with Anya in good health, despite the fact that she was essentially functioning without an immune system. Praise God for so many healthy months!

January Update

2009-01-09T16:13:00.004-05:00

I (Israel) took Anya in this morning for her monthly appointment and quarterly spinal tap. Thankfully the spinal tap went very smoothly! The pain medication was regulated, and Anya lay calmly throughout the whole procedure! There was none of the resistance or crying that had occurred with the first two since we returned to KC.

This was a HUGE blessing for me. While Anya does not remember any of the spinal taps, even when it hurts, it has been very difficult for me to watch her suffer while the doctors attempted to find the ideal dosage of the pain killers (which Anya refers to as her "sleepy medicine" and "silly medicine").

While the doctors said that Anya looked great overall, her Absolute Neutrophil Count (ANC) was down to almost zero (.01). This means means that she has very few white blood cells to fight infection. Since chemotherapy kills white blood cells while killing leukemia cells, the doctors instructed us to withhold her chemo for the next week. We will take her back on Thursday for blood work to see if her counts have recovered.

According to the doctors, if all of Anya's blood counts were lowered, there would be reason to believe that the leukemia had returned. Because only her ANC has been affected, they suspect that in the midst of cold and flu season Anya's body's white blood cell supply has been tapped out by the combination of chemo and fighting illness. While Anya has not been symptomatic the low count may indicate that her body is fighting something.

So for this week we're back to trying to keep things as sterile as possible and limiting Anya's exposure to public places. And we are praying that Anya is in fact still in remission, and that the white blood count will increase by her next appointment.

She begins steroids tonight for five days, so she won't be fit to go out and do a whole lot anyway, but it is disappointing in that she planned to attend church tomorrow and have friends over tomorrow night. That will have to happen another time. We had begun to forget what it was like to quarantine ourselves...this week should remind us and help us to be even more grateful when her counts go back up and she can come and go as she pleases.

As always we want to express our gratitude for your ongoing love and support, and solicit your continued prayers. This week would you join us praying specifically that Anya's lowered count is not an indication of a serious problem, and that things will be back to normal when we go in next week?

Also, I plan to travel to northern California on Friday to preach for a special service there. Please pray that God would give me safe travel and the words to speak as I minister. We love you all.

Family News

2008-12-15T17:13:00.003-05:00

For those of you who haven't heard...we are expecting a new addition to our family in early August! We are all thrilled for a new baby!

Anya has been asking for another baby for a while now, so she is finally getting her wish. She loves being a little mommy to Isaiah, and she looks forward to getting to help with another little one.

December Appointment

2008-12-15T17:07:00.003-05:00

Anya's December appointment was on Thursday morning. The roads were icy and I (Anna) wasn't comfortable driving so Israel took her to the hospital again this month.

Israel said that the appointment went really well! As usual, Anya was feeling sleepy and a little 'icky' by the end of the visit but thankfully the nurses had no problem getting a return on her port and she was able to get her regular IV chemo and preventative antibiotic.

Anya was originally scheduled to have another spinal tap this month, but there was a scheduling problem so it was rescheduled for next month.

November News

2008-11-27T07:32:00.007-05:00

Anya's November clinic went pretty smooth. Israel took her this time, and it was a pretty standard visit. The nurses did have some difficulty getting a return on her port, but they didn't get worried about it this time and were just hopeful that it would work next month.

Here are a few recent pictures:

The girls recently completed a series of swim lessons at the YMCA. They loved learning to swim!

They had an excellent instructor and we can't wait to keep practicing their skills in the pool!

Here is a picture of all the kiddos taken by a good friend at church.

Can you see Anya's hair getting longer?!

Outdoors!

2008-10-17T19:12:00.006-04:00

I love Fall! I love the changing color of the leaves, harvest decorations, Pumpkin Patches, hay rides and the cool, fresh air outside. Too bad that Winter is just a few months away!

The kids and I took advantage of a beautiful fall day yesterday out in our backyard; here are a few pictures of our time outside.

October Appointment

2008-10-17T18:58:00.006-04:00

Anya's October appointment was this morning. Everything went smoothly; she received her regular chemotherapy through her IV and had a great time playing in the playroom.

One of my (Anna) favorite things about going with Anya to her appointments is having the opportunity to meet other children who have leukemia or other forms of cancer and their families. Today we met a 13 year old girl who travels over 200 miles 4 out of every 6 Fridays for chemo treatment to fight a tumor behind her eye. On top of dealing with her own physical problems, less than two years ago she lost her mother to a cancerous brain tumor! So her now single father is responsible for her medical care, and the regular care of her younger sister while grieving over the loss of his wife. When I meet children like this, I am reminded of just how blessed we are. Thank you, Lord.

Improvement!

2008-09-25T09:28:00.002-04:00

We've seen marked improvement in the way that Anya has been feeling! She hasn't complained of feeling 'miserable inside but not out' in over a week! Praise the Lord!

Why the Spinal Taps?

2008-09-13T13:16:00.000-04:00

During the Maintenance Phase, Anya's doctors will continue give her a spinal tap once every three months to inject chemo medication directly into her spine. Thankfully, the doctors have never found leukemia blasts in her central nervous system but they give her this "intrathecal chemotherapy" to prevent it from developing/spreading there.

My understanding is that recent research has shown that without this preventative therapy, some patients later develop leukemia in their CNS which is more difficult to treat. Early in Anya's treatment, the doctors explained to us that each of us has a protective barrier between our body and our CNS. If the leukemia can break through this barrier, they find the conditions there good for growth and multiply quickly. Therefore the doctors choose to be "better safe, than sorry".

September Clinic Visit

2008-09-13T12:02:00.006-04:00

Anya's spinal tap went much better yesterday than the one she had a couple months ago! It wasn't perfectly smooth, but it was a big improvement and the doctors are confident that they can have the medications regulated for the next one. Praise the Lord!

In general the visit was a good visit. Anya didn't experience as many bad side effects from the pain medication, she recovered quickly and was able to get home by lunchtime. Hooray!

While they were at the clinic, Israel asked the doctors a couple questions. In case you are interested, here are a few of his questions and their answers.

Question: How do you know that Anya has not relapsed since you are not doing bone marrow aspirates anymore?
Answer: When a child relapses, there are several signs that would indicate the leukemia has returned. Anya doesn't have any of these symptoms. One of the first indicators of relapse is when a child's platelet count consistently decreases from month to month. Anya's platelet count fluctuates up and down and up again from one month to the next.

Question: How often after Anya finishes treatment will she have to be tested to see if the leukemia has returned?
Answer: Anya will have to be tested every month for the first year after she finishes treatment, and every two or three months for the next year. After that we'll just look for signs that she is developing properly. For example: Is she is hitting puberty at the appropriate time? Is she is generally happy and healthy and growing?

Question: For several weeks, Anya has been feeling sick more often and is generally more fussy than she usually was the past several months since she started Maintenance. What do think is causing this?
Answer: Methotrexate, one of Anya's chemo medications, can give kids an indigestion-like feeling that they usually don't know how to explain. This discomfort can be further irritated by the other medications she is on. The timing corresponds with when we increased the Methotrexate and Mercaptopurine medications. She needs to take a daily dose of Pepcid-AC.

So we've started the 'daily' Pepcid-AC. Hopefully this will help!

Miserable Inside But Not Out

2008-09-07T22:38:00.003-04:00

Off and on the past three weeks Anya has been feeling more sick than her 'usual' since she started this last phase of treatment. She frequently tells us, "I feel miserable inside but not out". We're not sure exactly what that means but we know that we hate that she feels sick!

Some days Anya seems fine, but then other times she is especially sensitive and fussy. In her previous phase of treatment, we asked her doctor about her fussiness and she just reminded us that Anya's medications take a toll on her body and that the fussiness is to be expected. I guess we hoped for some type of "make it all better" pill. But since things were better for a while, and they have recently upped her medications, we plan to ask the doctors about it again this Friday at Anya's clinic appointment. They'll probably say the same thing as before, but we always hope there will be something we can do for her.

Speaking of Anya's next clinic visit...this Friday Anya will have her second spinal tap since we've returned to Kansas City. As you may recall, the last spinal tap was very painful and overall a terrible experience: most of all for Anya (who had to go through it all) but also for Israel (who had to watch it all) and for me (who had to hear about it all). Let me tell you...I was NOT a happy momma when I heard what she went through.

In Toledo, Anya's spinal taps were always done under "conscience sedation" - basically she was asleep. However the Children's Hospital here in KC uses a different type of sedation medication and for some reason weren't able to regulate it properly during the spinal tap procedure. So we're desperately hoping that things will be better this time. Anya's new doctors make no promises, only expressions of their desire that things will work the second time around. If they don't, we'll probably make a STRONG push for them to use the type of medication for Anya that was used in Toledo unless of course, it is not in Anya's best overall health interest.

"Golden" Birthday

2008-09-07T22:28:00.002-04:00

Last Friday was Anya's fifth birthday! And as a friend said, it was her "golden" birthday because she turned five on the fifth! We did the usual birthday song and birthday "spankings" on her birthday but most of the celebration was done the weekend before. My parents and brother were in town so we all surprised Anya with a trip to Chucky Cheese on Saturday night and she opened most of her presents that night when we got home. Then on Sunday evening we had a BBQ and birthday cake with a few friends and Anya received one more present.

We're so thankful for our precious girl; she is such a joy to us - I can't imagine life without her! She is sweet, gentle, helpful, God-loving, caring, compassionate, giving and a fabulous sister.

Hard Nights

2008-08-28T07:07:00.004-04:00

Last night was a hard night. Over the course of the night Anya woke up five different times: because of a headache, stomach ache, and later vomiting on three seperate occassions. As she threw up, she was dry heaving, tired, and trembling yet she didn't really cry or fuss. She was such a trooper! I wish that she didn't have to go through such nights but I am so proud of her for how brave she is through it all...what a big girl!

August Update

2008-08-25T17:47:00.011-04:00

We're back at the steroids again as of last Friday. As usual, Anya has been tired, moody, hungry, and cold. Anya typically experiences the same side effects each month, though it seems like sometimes something may bother her more one month than the other. This month, she has been especially cold. She has been bundled with blankets and a sweatshirt for most of today.

Her monthly clinic visit went very smoothly. She received her usual preventative antibiotic, medicine to sooth her stomach, and IV chemo medication. Her ANC (absolute neutropil count, or the number of a certain type of white blood cells in her body) was still high so they increased the dose of her daily chemo medication by one pill per week.

The past few months we have taken Anya to church on Saturday morning, even though she was on steroids, because she had only had three doses by that point and we knew that she enjoys going to sing to Jesus and to see friends. But this week we decided to keep her home - she seemed to do much better all day! The stimuli of leaving the house and being around so many people must have been wearing her out. So perhaps now we'll just keep her home each month. We'll see...

Israel's mom (otherwise known as "Mammy) and step-brother came to visit about a week and a half ago and just left this afternoon. It was nice for us to get to see them again and for the girls to get to bond with them a little bit. We only get to see Israel's family on rare occasions since they all live on the West Coast so visits are a real treat! Just before Mammy left, she bought Anya & Esther some fun craft supplies - we can't wait to use them! Thanks Mammy!

Here are some pictures of their visit:

July Steroids Done!

2008-07-30T14:12:00.002-04:00

Last night was the last of Anya's steroids for the month! Nothing really new to report, as usual she has felt sick to her stomach and had a small appetite in the mornings and then melancholy, and hungry through the rest of the day. She was only up through the night once or twice this time around...yeah!

We decided we are going to have a small victory party to celebrate completing this round of steroids on Friday night - pizza and family time!

Smooth Clinic Visit

2008-07-30T14:02:00.001-04:00

Anya had her monthly clinic appointment last Friday and things went very well. The medical staff didn't have any trouble accessing her port, like they did last time, praise the Lord. She had a good time playing in the playroom and made several crafts.

Her healthy blood cell counts are higher than the doctors like them to be during this stage so they have upped one of her chemo medications. If we go back again and the counts are still higher, the doctors will up the daily chemo medication.

We also found out that Anya's last day of treatment is October 25, 2009. When the doctor told me this date, it was hard moment for me. I guess I had hoped that we were further along and that we were around the year mark. I just can't wait for all of this to be over. I feel for the mothers and fathers who have children with lifelong health problems, may God give them the strength and joy they need to endure.

July Appointment & Steroids

2008-07-08T10:46:00.003-04:00

Sorry this post is about a week late, but it's been a pretty crazy time for us the last two weeks. Anya went in for her monthly appointment about ten days ago and had her first spinal tap here in Missouri (after recieving around 15 of them in Ohio). In Ohio she was placed under conscious sedation, appeared to be asleep, felt nothing, remembered nothing, and experienced no pain and relatively little discomfort during the procedure and afterward. However, here in Missouri they use a different type of medicine to numb the pain, and she is still awake and somewhat interactive.
Apparently different children respond to different doses of the medicine and unfortunately they did not establish what Anya's ideal dosage was at any point during the procedure. As a result she experienced a great deal of pain during her spinal tap. It was extremely difficult for me (Israel) to see Anya suffering...I had grown very accustomed to her not crying about anything that happened at the hospital. Thankfully the medicine causes memory loss for the time that she was on it, so after about an hour she could no longer remember anything that hurt, or any of the other experiences she had while medicated. The doctors expressed regret for what had happened, it was not what they had anticipated. They will attempt to regulate the dosage better next time (in three months) so that Anya does not experience any pain.
The day at the hospital had a few more mishaps in addition to the problems with the spinal tap. Apparently I fed Anya too much, too fast after the procedure because she vomited. This was pretty hard on her as she had not been allowed to eat prior to the procedure and then lost everything that she had been allowed to eat afterward. She ended up having to be satisfied with small amounts of juice and crackers for a couple hours. Also, while I had packed a change of clothes for her I had not done the same for myself, and ended up walking around with puke on me the rest of the day!
To make matters worse they were unable to get a blood draw from Anya's port (they have had difficulty each of the last three times we have come in) and finally sent her to get an X-ray done on the port to see if there was a blockage. Thankfully all was well and when we got back from the X-ray room they tried again and finally got a good blood return. This allowed them to take blood labs and administer the rest of her medicine. We had arrived at the hospital at 8:15am and left around 4:30pm. Quite a bit longer day than we expected going in!
Anya held up well on this last round of steroids (which started the night of her appointment and lasted five days). Each month she has learned to manage the mood swings better, but there is still definite evidence that her emotions are subject to an outside influence. She is moody, needy, and easily upset while taking the steroids. One major change this month is that she was having stomach trouble while she was on the steroids which kept her from eating as much as she normally would. She still had an increased appetite, but because she often felt sick to her stomach she did not always want to eat. We administered a medicine to help her stomach feel better, but it has a side effect of headaches, and she has been suffering with them lately. So, we're trying to find the right balance of each of the drugs to help her deal with symptoms without creating too many side-effects.
The day Anya finished steroids (last Wednesday) I left for the weekend to preach and teach at a youth conference in Tennessee. Anna (also known as SuperMom) stayed behind and did an excellent job caring for the kids. It's been an eventful month for us as we've entertained out of town guests each of the past four weekends. I'm so thankful for my wife and her incredible homemaking abilities! I got back home Sunday morning and am happy to be reunited with my family. The past few nights Anya has struggled to fall asleep, as she has really been missing freinds and family. She just lays and cries and is difficult to console. Of course this is very heartbreaking for us and we ask that you would pray that God would bring her comfort.
Overall we are doing well, trusting the Lord and relying on the support of so many faithful friends. Esther and Isaiah continue to grow and develop, and we are thankful to see Esther becoming more and more spiritually aware. We covet your prayers for our family, especially that God would give Anna and I the strength and wisdom to be good parents and spouses. Thank you for your continued love and support.

Relay For Life

2008-06-23T19:33:00.008-04:00

On Friday, Anya and I were privileged to participate in Olathe, KS's annual "Relay for Life", sponsored by the American Cancer Society. She was honored as a "Cancer Survivor" and was given a free catered dinner for herself and a guest and was asked to walk with other survivors around the first lap. She was so proud to walk it by herself with her survivor friend that she met that night (see the third picture above). It was a very special night for both of us.

Playset

2008-06-08T21:42:00.009-04:00

We found a used wooden playset for the kids!!
Thank you to Jeff & Ken, two friends from our church, who helped Israel take it down, bring it to our house, and put everything back together. We couldn't have gotten one without you!

This playset is such a special blessing for our family; it something I have hoped for and prayed for since before we even left Ohio. The steriods cause Anya to have a sometimes insatiable appetite and to retain water, and this playset will give her plenty of opportunity to get exercise even when we aren't able to make it to a park. And it gives our family lots of fun times outside together! We have already spent much time outside.

One time when we were outside, Anya told me that her swingset reminded her of the Heidi movie. When I asked her to clarify, she said that it was like her mountains. If you've watched Heidi you'll know that the mountains were a place of hope and healing for Heidi and her cousin. It may seem dramatic, but yes, the swingset is our moutains!

June Steriods

2008-06-03T12:15:00.007-04:00

Last Friday, Anya returned to the clinic to receive her IV antibiotic and chemo. It was a special time for me (Anna) because it was the first time that I've been to the new clinic here in Kansas City. It was a much bigger clinic than the one in Toledo, with more nurses and doctors, and therefore much less of that "family" feeling that we had before. Made me miss the St. Vincent's Team! But everyone we came in contact with was very friendly and personable and I look forward to trying to build a stronger relationship with everyone at Childrens' Mercy.

This time around, Anya and I were in a private room with a tv and video games. Anya was able to request snacks and we had access to the toys in the play room. For the first hour or two, Anya and I just talked and watched TV - and even tried to play Nintendo Mario Brothers! :) But after a while, Anya became ansy so I visited the playroom and found "Guess Who", a game we played together when we lived at PawPaw & Grandma's house. If you know anything about playing games with Anya, you won't be surprised to know that she won both rounds.

Everything about this visit was routine, except that the nurses were having difficulty accessing Anya's port. They assumed that since she has had it for a year now, that it must be developing a film inside making it difficult for the fluids to flow. So they gave Anya some medication through her port called TPA to try and clear the film. Fortunately, it worked!

Of course, the monthly clinic visit signals the time of the month when Anya is on steriods for five days. She suffered the same usual side effects, and as always it is hard to see her have to deal with it all. But it seems like she was able to handle things a little better this time, praise the Lord. We always tell her, "Anya fight the steriods" and she is quite the little fighter.

Songs of Love

2008-05-19T12:30:00.003-04:00

Songs of Love, a non-profit organization, made a personalized song for Anya and sent us a copy on a CD. I wish that you all could have been there that first time when we heard the song...Anya was all smiles and Israel and I were in tears, grateful that we still have our little Anya with us today. And of course, Anya has listened to it multiple times since that first time! :)

If you would like to request a "Song of Love" for a child or teen you know facing medical challenges, visit http://www.songsoflove.org/. You can also visit the website to listen to Anya's song for a donation. You have to know that her name is "Steinmetz" and the Record Number is "15121".

Anya's Note

2008-05-08T22:03:00.004-04:00

Anya wanted to write a note to "all of the people". She writes, "i love you".
And Esther is in bed.

Daddy Daughter Date

2008-05-08T21:51:00.006-04:00

Israel took Anya out on their first "Daddy Daughter Date" tonight.

Feeling Better

2008-05-08T16:50:00.003-04:00

Anya woke up yesterday morning feeling pretty well so I prepared some breakfast for her. After just a few bites, she threw up what she had eaten so we called the nurse again. The nurse said again that we could bring her in or keep her home: we decided to keep her home. The nurse also suggested a bread and water diet - which Anya was not thrilled about! :)

But shortly after she lost her breakfast, Anya was up playing and didn't have any more complaints all day. So we're guessing that either she had a little virus or that the steroids caused problems with the acidity in her stomach as they have in the past. We'll have to see if the doctors want her to go back on the stomach medicine during her next round of steroids.

But we're thankful Anya is up and playing with no more diet restrictions!

"Hair" Prayers

2008-05-06T23:30:00.007-04:00

In case you didn't get to read the last comment from a friend with two preschool age girls:

"Israel and Anna, Thank you for being vulnerable enough to share the rough times. It really touched my heart to hear Anya's sadness at not being able to have a ponytail - when I we pray at night for her - Katie & Maggie always ask for her to get her hair back."

Sometimes it seems so trivial to me to worry about such things when we have been blessed to still have Anya here. But it has really been emotionally challenging for her not to have hair, especially with the girly girl that she is. On different occasions she has cried and even wept because Esther was able to have her hair put in ponytails or bows, but she wasn't. I've bought Anya headbands & attaching bows, but to her they are not the same.

The other day we went to a garage sale and there was another little girl there with her mom. In front of Anya, the little girl said something to the effect of, "Mom, is that a little girl or a little boy because she doesn't have any hair?" On the way back to the car, I asked Anya if what the girl said had hurt her feelings. Anya replied, "No, it just made me feel funny inside." And my heart hurt for her, whose wouldn't?

And truthfully, it has been hard for me as a mom to see my little girl without hair, face swollen, and off and on out of sorts emotionally. So we will surely party when Anya has her hair back, long enough for bows, pig tails and ponytails!

Michele, Katie, & Maggie: Thanks for your "hair" prayers!

Tuesday Evening

2008-05-06T21:15:00.008-04:00

At around 5:30pm this evening, while Israel and I were preparing for dinner in the kitchen, Anya laid down on the floor and began complaining of a headache. She said that she wasn't able to sit at the table and eat, so once food was ready I sat down with her to feed her. But after just a few bites, she threw up a couple times. It is so pitiful to see her sick. After being cleaned, she asked to be alone without the lights on in the living room with a movie.

Israel called the after hours number and the nurse said that we could bring Anya into the hospital or we could wait things out. She suggested that Anya may have a viral infection or a traditional migraine headache (though we doubt the latter because she's never had one of these before). We decided to just stay here at the house, where Anya will be most comfortable.

Anya fell asleep before her movie was over, a few hours before her normal bedtime. We will keep a close eye on her and pray that she will be better before the morning. Things have gone so smoothly since we've been home. Yet times like these, or yesterday when she broke down because she couldn't have a ponytail like Esther, are hard reminders of her condition. But we also remember that things could be much worse.

Maintenance Overview

2008-05-04T22:12:00.002-04:00

Now that we have completed the first month of Maintenance we're beginning to get a fuller picture of what we can expect throughout the rest of Anya's treatment. The Maintenance phase is the last phase of Anya's treatment prior to her being pronounced "medically cured". As with all of Anya's treatments up to this point the Maintenance phase can be prolonged by delays caused by sickness or low counts. Praise God that we made it through month number one with no such delays! The Maintenance phase consists of:
-An oral chemo pill taken seven days a week (a pill and a half on weekend nights) that must be taken without food being consumed two hours before or after the pill is taken.
-An additional oral chemo drug (six tiny pills) taken every Friday night.
-A clinic visit once a month to recieve two chemo drugs through Anya's port.
-Five consecutive days of oral steroid pills each month that begin the day we go to the clinic.
-A spinal tap every other visit to the clinic (once every two months).
For the most part this is very manageable, and is definitely less intense than the previous ten months of treatment. Anya has made yet another development in the past month in that she now takes her oral meds without complaint, whining or fussing. She has always taken the pills in a tiny bite of food and her current choice is to take the pills stuffed into an olive! She gets one "yucky" olive, followed by one "yummy" one. She is really a trooper and it has been good to see her get past the displeasure of taking the pills.
So, the hardest part of Maintenance is the five days on steroids. We started steroids Wednesday night, so tomorrow (Monday) morning will be our last dose. While I believe she has dealt with them better this time around than last month the effects are still obvious. Her appetite has steadily increased and she now wants multiple snacks between meals (craves the carbs, salt, and protein). This makes her daily chemo pill hard for her as she must go several hours without eating. We try to be done with dinner by 6:30pm and then give her the meds right at bedtime. She really struggled tonight, begging for food off and on between 7:30 and 8:30pm, but she made it till bedtime and is now asleep. She was up eating in the middle of the night last night and we expect that again tonight.
Her moods have also shown the effects of the steroid. She is very fussy and needy, irritable, and much more prone to conflict with the other two kids. Again, I've seen improvement in this area even from last month's steroid run, but it is still very difficult to see her suffering. When she's not on the steroids she is so compliant, rational, sweet, and content. Seeing her change into a different person is heartbreaking for me. Thankfully we took the 9th of 10 doses tonight and the effects of the steroids will gradually wear off in the days to come.
Anya is looking forward to performing a "special" in church on Saturday, May 17th. She plans to sing and dance, although she hasn't decided between "I love you Lord" and "I have decided to follow Jesus". It is exciting to look forward to that and know that she will be in the frame of mind to do it when the time comes. She was miserable and unpredictable enough this past Saturday that Anna kept the kids home and I attended church alone.
Again, let me take an opportunity to thank each of you for your love, prayers and support. We cannot imagine a more loving and compassionate response to our situation than the one we have recieved. We are blessed beyond description as God has shown His provision through the hearts and hands of those who love us. Thank you for everything. We will do our best to keep you updated, though we are often consumed by the task of re-assimilating to life here in KC. Until next time, Good Night.

Tuesday Visit

2008-04-30T19:37:00.005-04:00

Israel took Anya yesterday to meet her new doctor and his team. Anya received intravenous chemo & a preventative antibiotic, as she will at the beginning of every month until Fall 2009.

Both agreed that her new doctor, Dr. Gamis, was fabulous and that Children's Mercy seems like a great place. We praise God for His mercy!

Tuesday

2008-04-24T09:00:00.002-04:00

Anya's nurse called yesterday and said that someone would be calling today to get more information for their records. She has also scheduled an appointment for Anya on Tuesday afternoon. Anya is "scheduled" for chemo on Friday but they decided that the few days delay wouldn't hurt and since they have more time on Tuesday to meet with us, they'd rather have us come in then.

Doctor Appointment?

2008-04-22T20:43:00.003-04:00

We called Anya's new doctor at Children's Mercy here in KC yesterday to schedule her next appointment. Unfortunately the pediatric hem-onc office hadn't received her medical records yet. The nurse here said she would try to work on things from her end.

According to this past 30 day cycle, it looks like Anya should be back in the clinic on Thursday for more intravenous chemo and perhaps for another spinal tap. I was happy to hear that they sedate kiddos for spinals here too. Praise the Lord!

Anya will also be starting another 5 days of steroids here shortly...bummer.

New Doctors

2008-04-20T12:26:00.002-04:00

Tomorrow morning we will contact Anya's new doctors to schedule her next appointment. To be honest, I am at least a little anxious about this next step. We had all really come to love and trust her team at St. Vincent's Hospital and I can't imagine how any team could compare to the genuine care and concern the team there had for our little girl.

It may seem trite to be so concerned with such things but because a great deal of Anya's wellbeing rests on her comfort and security this is a really big deal to us. We pray that her new doctor would be as thorough, caring, and sensitive as her last and that his team would really embrace Anya as a little person with a unique personality and emotions, not just another patient. And we pray that Anya would feel comfortable with everyone and everywhere she encounters at her new treatment facilities.

We're Home

2008-04-20T12:13:00.004-04:00

We're now home and working feverishly to reconnect with old friends and to get re-organized in our old house. Thank you, Dad, for driving our second vehicle to Kansas City for us and for all of your help with the kids these past few days. We are sure going to miss you!

And wow, what a whirlwind weekend we've had! On Wednesday, our eight hour trip turned into twelve and on Thursday we unpacked the vehicles and tried to get as much put away as possible before crashing. On Friday, Israel returned to work and on Saturday we attended services and ate a potluck with our church family. Today is another big work day - Israel is out mowing the backyard and I've been working steadily in the house. And there is still so much to be done!

Meanwhile, the kiddos are enjoying the nice weather today - playing outside with their chalk and running around the backyard. We are really hoping to get a swingset for them to play on in the near future if possible. Anya is still carrying extra weight from the steroids and we'd like to help her get back to herself without putting any pressure on her to exercise. A swingset would make things fun for her and our other two monkeys.

Returning to Kansas City

2008-04-15T07:22:00.002-04:00

Today is the big day...we are leaving Toledo to return to Kansas City. The plan is to drive four hours to Indianapolis to stay the night at my grandparents' house and then to drive the remaining eight hours on Wednesday.

Anya is off steroids for the rest of this 30 day cycle...yeah! She is currently on an evening dose of oral chemotherapy and a second oral chemo drug on the weekends. She is feeling well, though still easily tired. We are thankful that she has been well enough to attend church, visit friends, and play with her cousins.

Steroids

2008-03-31T19:21:00.002-04:00

Wow, what a day! As of yesterday afternoon, Anya has been feeling the full effects of the steroids. She was up several times throughout the night crying and frustrated. Today she has been needy, demanding, fussy, hungry, tired, and grouchy. Poor thing.

Add that to the fact that Esther, Isaiah, and I are sick and you've got a recipe for a hectic day!

We were hoping that Maintenance would be easy but it looks like we've got another trying year and a half ahead of us. But we are thankful for a good church family in Kansas City and know that God will give us the grace to make it through.

Anya & Esther Meet the Princesses

2008-03-31T15:33:00.004-04:00

One of the highlights of the trip to Orlando was when the girls met the Disney Princesses in Magic Kingdom. Anya was speechless and all smiles...it was priceless.

She was disappointed that she wasn't able to wear her Cinderella dress for the occassion but it was a cold, hectic day and it simply didn't work out. But she still thoroughly enjoyed the event...especially the kiss from Aurora.

See http://www.disneyphotopass.com/ and enter: annasteinmetz@yahoo.com as the username, makeawish as the password to see pictures.

Orlando!

2008-03-30T20:53:00.005-04:00

The kids are asleep and Israel is busy watching an "Andy Griffith" episode so I thought I'd take the chance to write a bit about our trip to Orlando.

We left first thing Thursday morning in style - in a white stretch limo. The girls were dressed in blue Cinderella skirts and tiaras and carried scepters. They looked like true princesses!

After about eight hours of traveling we finally arrived at "Give Kids The World Village" resort, a marvelous place exclusively for children with life threatening diseases and their families. There we were greeted with smiles and gifts - and our dream week began.

Our villa was a spacious two bedroom, two bath place with a jacuzzi tub. The resort offered free unlimited ice cream, mini-golf, train rides, carousel rides, special events, and meals. There the girls attended a Pirate & Princess Party where they were pampered and officially crowned princesses in a special ceremony. On another evening they participated in a life size Candyland Game. They also got to meet Mickey & Minnie Mouse and Sponge Bob!

Although we could have spent our entire week at GKTW, they also provided us with tickets to all the most popular Orlando theme parks and a number of lesser known attractions. We didn't even have time to use them all! In just five days we visited Magic Kingdom, Animal Kingdom, Gatorland, Island of Adventure, and Sea World. The girls met the Disney Princesses, fed dolphins, watched the Nemo musical, played in Suess Landing, and touched a baby crocodile. They played in Pooh's Playful Spot, interacted with European deer, and met the Suess characters. We couldn't have imagined a more splendid week of family fun and adventure!

But the most beautiful thing is that we were on vacation as a family, enjoying one another and relaxing after nine long, hard months of hospital visits and medications. Even Anya said that her favorite thing about our trip was, "Being together".

It was also very special to be around other families who are facing situations similar to ours - where children being bald, riding in a wheelchair, or having scars was the norm. It was wonderful to be able to share stories and hurts with other families, and even to cry with another mother or two. And I was reminded that we are not alone, that we are not abnormal, and that we are blessed.

It is simply impossible for me to describe our week in a blog. But like Israel wrote in an email to his mom, "In short we had a marvelous time, with all of our expectations being exceeded. It really was like being in a dream the whole time, like taking a break from reality for a week."

Our trip ended in style with a limo ride home from the airport and a friendly reception by my parents. And now we're back to real life, and thankful for the precious life we've been given.

Thank you to Make-A-Wish (www.wish.org), Give Kids the World Village Resort (www.gktw.org), Anya's medical team, and the numerous donors and volunteers who made our trip possible. And thank you to BabyHawk (www.babyhawk.com) for donating a baby carrier for me to use with Isaiah on the trip!

We're Back & Maintenance Begins

2008-03-28T11:50:00.011-04:00

We returned on Wednesday night at 11:30pm from the most incredible, memorable, precious vacation...it was a trip beyond our highest expectations.

Here are a few pictures...

Anya officially starts Maintenance today with a spinal tap at 2pm. This is a big day for us...we can finally say that Anya is on her last phase!

Orlando Here We Come!

2008-03-19T21:25:00.000-04:00

Tomorrow is the big day - we leave at 6:30am for Orlando, Florida and won't be back for a week!

We'll be sure to post pictures once we return.

We're Going to DisneyWorld!

2008-03-12T18:14:00.000-04:00

It's been a whirlwind 48 hours but things have fallen into place - we're going to DisneyWorld on March 20-26th! Needless to say we are extremely excited!

To make a long story short Anya's doctors have determined that we should make the trip now because they do not anticipate that Anya's counts will have recovered enough to start treatment by next week anyway. This is ideal as it means that Anya will not be on any chemo while in Orlando and won't be suffering any after effects of steroids (two of our former concerns).

The Wish Granters from the Make-A-Wish Foundation just left our house after debriefing us on the coming trip. They also brought a few goodies including a princess crown & sceptor for Anya...and of course, we'll get a set for Esther too.

Here are a few highlights of our trip:

- A limo will pick us up and take us to the airport in Detroit.
- We'll fly non-stop to Orlando and be taken via shuttle to Give Kids the World, an exclusive resort designed specifically for Make-A-Wish kids. We'll enjoy swimming pools, complimentary breakfast and dinner, and unlimited ice-cream.
- Once there we'll receive passes to all of the Disney parks and SeaWorld and shuttle transportation to get us to each location.
- We also received a generous check for spending money to cover our lunches, souvenirs, and any incidental costs that come up while we're there.
- Upon our return to Detroit a limo will bring us back home again.

Our family is so excited to be going on this trip. After the Make-A-Wish people left we all danced around the living room for a while singing, "We're going to Disney World!"

We are so thankful to God for providing this for us and working out the details. We're also thankful to all of you for your prayers and of course to those who donate to Make-A-Wish in order to help families in need to make their dreams come true. We can't wait to go on the trip and share our memories and photos with you. Until then we've got a lot of work to do to get ready for a week away. Praise the Lord!

Maintenance & Disney Delayed

2008-03-10T16:41:00.000-04:00

Anna took Anya to the clinic this morning (Monday) for blood counts. If they were high enough we were going to begin Maintenance tomorrow with a spinal tap. Unfortunately the ANC was too low to begin another round of chemo. We'll now wait and take counts again next Monday in hopes of starting Maintenance next Tuesday (March 18th).

This delay in treatment has also resulted in our trip to Orlando being delayed! The Make-A-Wish Foundation notified us yesterday that they had scheduled our trip to DisneyWorld to begin on March 20th!! But now that will be impossible, regardless of if Anya begins Maintenance next Tuesday or not because of the revised treatment schedule. We had really been looking forward to some fun in the sun as a break from this winter weather!

We're not sure what, if any, changes will need to be made to the timing of our return to Kansas City. Please continue to pray with us that Anya's treatment would resume speedily and that we'd have God's wisdom concerning the timing of our return home.

Maintenance Overview

2008-03-06T23:06:00.000-05:00

The case manager for the clinic, otherwise known as "Pam", and one of Anya's favorites, gave us an overview of treatment during Maintenance. It will include:

a spinal tap with chemo every 3 months
a clinic visit for intravenous chemo and preventative antibiotic every month
steroids for five days of every month
oral chemo everyday

We had mistakenly been under the impression that Maintenance wouldn't include quite so much treatment. But we have again been reassured that this phase is not as intense as it was during Induction, Consolidation, or Delayed Intensification but rather similar to Interim Maintenance. They have said that Anya should be feeling more like herself during this next year and a half. We have also been told that most kids return to school during this time and that their hair begins to grow back. We are praying for a smooth transition to this new line of treatment.

(Previously we had been told that there was a good chance that Anya would be delayed in starting Maintenance next week because her counts have traditionally dropped and recovered late. However on Wednesday her counts were stable so we were told than that there is a good chance that she will start Maintenance on time next week after all. She is scheduled to have blood work on Monday and at that point we'll know something more definite.)

No More "Delayed Intensification"!

2008-03-06T22:38:00.000-05:00

On Wednesday, Anya's visit to the clinic for chemo and a preventative antibiotic concluded the delayed intensification phase! Esther tagged along with us and got to see what happens when Anya goes to see the doctor. Unlike the usual quiet office, there were several other patients there for treatment so it was quite a zoo. But it was neat to talk with some of the other parents who are going through a situation similar to ours. It always helps put things in perspective.

While there, during lunchtime Anya started crying really loud because she was nauseous and embarrassed that she was going to throw up in front of everyone. Fortunately the nurse was able to give her medication after her IV finished that helped relieve her stomach discomfort.

The doctor said that Anya shouldn't be continuing to feel so sick to her stomach as a side effect from her last chemo drug and therefore the steroids must have caused some repairable damage to her acid levels. She has put Anya on a medication to decrease the amount of acid produced in her stomach and we are hoping that it will decrease the nausea and sensitivity to smell.

Uneventful Week

2008-03-04T07:44:00.000-05:00

This has been a very uneventful week since Anya isn't scheduled for another chemo treatment until tomorrow. Anya has continued to be nauseous off and on and is more fussy than usual but overall she is feeling good.

Israel took advantage of this break and left last Wednesday night for another visit to Kansas City. I spoke with him last night and it sounds like he's had a great time visiting with the families of our church. He was planning to spend his last night of his visit going out with a few friends to Buffalo Wild Wings to take the "Blazing Fire" Challenge. (We all have to have a little fun!) Israel plans to drive back today and should be here by later this evening.

My brother Alan, who goes to school in Cleveland, visited us this weekend. The girls ate up his attention...it was nice to have him around.

One More Week

2008-02-28T12:29:00.000-05:00

Anya's overnight stay at the hospital went smoothly and she is quickly progressing through the rest of this phase. In the past two weeks she has finished thirteen days of Thioguinine, six outpatient visits for Ara-C, an outpatient visit for Peg-Asparaginase shots and Vincristine, and a spinal tap. Through all it she has continued to be up and playing despite some nausea, headaches, and fatigue. We have even been able to make a trip to Owosso, MI and to a friend's house here in Oregon for a playdate!

Next Wednesday Anya will return to the clinic for Vincristine, the last chemo treatment in this phase!

(In response to requests to post comments, I believe that we have finally figured out how to allow comments on the blogs. Simply click the "comments" link at the bottom of a post for the pop up window where you can type a note to us and other blog readers. We'd love to hear from you!)

Back on Track

2008-02-12T08:01:00.000-05:00

Anya went into the clinic yesterday where we discovered that her counts have fully recovered! So she will be starting her next phase of chemo this afternoon! She will be admitted to the hospital for an overnight visit for chemo infusion and a spinal tap.

We'll share more about these next four weeks of delayed intensification after we get the schedule from Anya's nurse today. Please pray that God would give us strength and energy to finish out this last month before we enter Maintenance. Also, you can praise God with us that Esther and Isaiah are both feeling MUCH better, making life a lot easier on everybody. Pray for wisdom regarding the possibility of Israel making one more solo trip to KC on account of this most recent delay in Anya's treatment. Thanks again for all the love, prayers and support- we're definitely feeling the effects!

One More Week

2008-02-04T19:50:00.001-05:00

Israel took Anya into the clinic today, as promised. Her blood work showed that her counts had actually dropped again since last week so she is not able to start her chemo tomorrow after all. The nurse said that there was no reason for concern, that the effects of chemo are cumulative and so especially in young kids it can cause delayed responses. So we'll take Anya back in on Monday to try again.

Over the weekend we took advantage of the time because all three kids were feeling well and we thought Anya's counts were high enough to be in public. On Saturday we drove to Owosso, MI to attend church where Israel attended when he was in high school. We really enjoyed seeing old friends and Anya loved getting to play with kids again. Thank you to all of you who were there for your love and hospitality...we left "all loved up"! And we sure didn't get to visit with everyone that we would have liked to so we hope to make it there at least one more time before we leave Ohio.

On Sunday we visited the Family Center at the Toledo Museum of Art. The girls loved playing with all of the pretend play toys and painting using the miniature easels. If you live in the area and have kids, I highly suggest that you visit there sometime (http://www.toledomuseum.org/)!

And just one more thing...the other day the girls and I were sitting at the table. The old hymn, "His Eye Is On The Sparrow" came to mind and singing with the gusto an adult free house deserves I belted out "I sing because I'm happy, I sing because I'm free, For His eye is on the sparrow and I know He watches over me" and at that moment it became real to me! God's eye is on the sparrow and He is watching over me, over us. We are not alone, God is not unaware of our circumstances or yours! And He is not merely a passive spectator; He is working on our behalf and if we acknowledge Him, He is directing our paths. If you haven't already, I encourage you to surrender yourself and your problems to the One who rules the universe, who is BIG enough to care for each and every sparrow, who numbers every hair on our heads. (see Matthew 10:29-31)

No More Chemo Yet

2008-02-01T19:55:00.000-05:00

Well, Anya's counts weren't high enough on Wednesday to start chemo on Thursday. So her doctor has asked that we come back in on Monday, February 4th to try again. She is fairly confident that the counts will be high enough by that time to start on Tuesday.

The doctors weren't concerned that Anya's counts hadn't recovered yet since she has been traditionally late in dropping and recovering. And they were thankful for the break so that Anya's bottom will have more time to heal. She is still waking in the night with pain and discomfort from it.

If we start on Tuesday, this phase will be completed in four weeks bar any infections. After that Anya will be able to start Maintenance once her counts recover again after this final part of delayed intensification. The next few weeks will include clinic visits for intravenous chemo, oral chemo, spinal taps, and a stay or two at the hospital.

Also wanted to share one story: In keeping with Israel's side of the family's tradition of giving each other lots of nicknames, we call Anya 'bean' and Esther 'pie'. Last night we were sitting at the table eating chili (we make ours similar to goulash). Anya picked through her bowl and ate everything except the beans. She asked for more pasta and I told her that she needed to eat two beans before she could get anything else. To encourage her my dad said, "You need to eat beans because after all your mommy calls you 'beany'." Anya sat and thought for a moment and then said, "Then I would prefer to be called 'pie'." Wouldn't we all?!

Esther & Isaiah - Our Other Little Fighters

2008-01-28T13:19:00.001-05:00

While this blog was mainly created to keep everyone updated on Anya's condition, it has also become a great place for us to document our thoughts and feelings throughout this difficult journey. Since leukemia takes a toll on the whole family I'd like to give a little update on Esther & Isaiah specifically.

In the previous post I mentioned that Isaiah wasn't feeling well. He is now teething and fighting whatever "bug" got him this time. He is still having trouble sleeping and cries after he coughs. He is pretty needy and is sleeping more than usual.

The day following the last post Esther had a fever and cough. Since that time she developed a moderate to severe case of croup and has been put on oral steroids and albuterol treatments. She has difficulty sleeping at night and has a harsh raspy sound when she breathes. She has lost her appetite and along with it a few pounds.

My heart just breaks for Esther. She is such a tender-hearted ball of energy that has been through a lot these past few months, just like the rest of us. But unlike the rest of us she doesn't have the ability to communicate her feelings or understand why Anya is crying and hurting. And she usually doesn't get the extra attention and special treats that Anya often does. Yet she still has to stay couped up in the house like the rest of us.

So many of you have committed to praying for Anya's health and for our family in general. Thank you. Would some of you also "stand in the gap" with us specifically for little Esther & Isaiah? They could use a touch from the Healer and Comforter.

2008-01-24T16:08:00.000-05:00

The past few nights Isaiah has had trouble sleeping and since Israel was leaving for Kansas City, we decided to take Isaiah to the doctor to check for an ear infection. Things didn't look bad at the time, but the doctor decided to give us an antibiotic, just in case things worsened. And am I thankful that she did! He got a fever, decreased appetite, and looked just plain miserable (not to mention that he is still not sleeping well). So we started the antiobiotic and he is improving.

Meanwhile, Anya is also improving day by day. Her moods are evened out, she is losing weight, her bottom is healing, and her appetite is returning to normal. She still has weight to lose and her bottom needs to get better but we are thankful for the improvements.

Anya went in for a checkup today and the doctor is happy with her progress. Anya has a cough but no fever and the doc said her lungs are clear! Yeah! Anya will return to the clinic on Wednesday for blood work because they'd like to start her next round of chemo on Thursday.

Just a note: A precious little girl from Arizona, who has fought bone marrow cancer in the past, wrote Anya a letter a few months ago to encourage her. It was really quite tender. We just received word that this little girl has relapsed. As a mom with a child that is remission and looking forward to the close of treatment, I can say that the possibility of relapse is frightening. If you are reading this blog, would you please take a moment to pray for this little girl and her family? Please pray that God would be their strength and that she would have a speedy healing.

Tuesday

2008-01-22T10:04:00.000-05:00

Well, today was supposed to be Anya's overnight in the hospital but the clinic visit yesterday revealed that her counts (especially her ANC) are too low for her to recieve the meds they wanted to give her during the overnight stay. The doctors aren't overly concerned about the low counts, we all just wished they had recovered faster so that this overnight admit would not be delayed. We'll check counts again Friday and see if Anya is ready for the admit early next week.
The big concern with her ANC being low is that she is more susceptible to infection. So we're back to really limiting our exposure to people and keeping Anya couped up here at the house where we try to wash hands constantly and keep Anya as safe as possible. The low ANC also makes Anya feel tired, sickly, and a little grumpy, but she's been a trooper and it's still an improvement from when she was on the steroids. She's been pretty cheerful this morning and is getting more and more active. Last night she was comfortable staying with Anna's mom so we left the kids with her and Anna and I had a much needed dinner date. Anya's bottom is steadily improving from the various meds and for the most part she is a lot more comfortable throughout the day. She has a little cough and a very low grade fever this morning but the nurse just encouraged us to get her rest and fluids. As long as there aren't more serious symptoms or a higher fever we won't need to take her in to the hospital.
With these latest developments my intentions of returning to KC for the weekend are up in the air. I had intended to begin the drive late Wednesday afternoon. We'll go ahead and prepare like I'm still going and then if Anya deteriorates at all between now and then I'll need to postpone the trip. Of course your prayers are greatly appreciated. God is good and faithful and we continue to put our trust in Him.

So much for a week without meds!

2008-01-18T22:25:00.000-05:00

We were supposed to be off of medication this week but after an unplanned clinic visit this morning Anya is now on four medications. If you recall when Anya was on the steroids she experienced constipation that we treated with several meds and prune juice. Once she started going again she went several times a day (because of her increased food consumption) and this irritated her poor little bottom. She has a rash, irritation, and a few small lesions, all of which are extremely painful when she uses the potty and potentially very dangerous because open sores in the diaper area can quickly lead to blood-borne infections that could land Anya in the hospital and possibly compromise her port. The doctors are taking the risk seriously and have placed Anya on meds that should treat the problem and guard against infection. Three of the meds are liquids taken orally and the fourth is a cream for her bottom, used in addition to the diaper rash cream we've been using. It is frustrating and embarrasing for Anya to have to use this stuff as she was completely potty trained during the day and only wet herself at night prior to going onto the steroids. It is very difficult for her emotionally to have to deal with getting her diapers changed, especially when they're poopy.
Despite all of this she continues to improve as the steroids work their way out of her system. Her moods have become brighter and more stable, although they are still prone to swing on occasion and she cries much easier than normal. Her appetite for food has decreased significantly, but she still wants several snacks between each meal. Her mobility/activity has increased and she has begun to lose the weight and water retention, although this process will take a few weeks. A few days ago she looked nine months pregnant, now it is closer to seven or eight.
In the midst of all of this we still have many moments that give us cause for reflection on our blessings and opportunities to laugh and experience joy. I'll share just a few stories with you before I go.
As a family we celebrate Hanukkah as a way of remembering God's deliverance and salvation of His covenant people throughout history, especially in the salvation that is available in Jesus Christ. We started celebrating about a month late because of Anya's treatment, but lit the third candle on the menorah tonight. Each night we tell a different story of God's deliverance of His people. Tonight I asked the kids if they wanted to tell the story and Anya said that she would tell it. She chose the story of David and Goliath and talked about how God gave David the strength to kill Goliath. She is such a thoughtful little girl with incredible spiritual sensitivity. She teaches and blesses us frequently.
Something else that happened tonight gave us a much needed dose of laughter. Anna has taught Anya that part of being a little lady means not using certain words that other people, including her father, use. Among the taboo words is "butt", which Anya and Anna replace with "bottom". Well, we customarily use Desitin to treat the kids' diaper rash, but the doctor recommended that for Anya's situation we switch to another product with the unlikely moniker of "Boudreaux's Butt Paste". As Anna was applying it to Anya today Anya just lay there laughing and saying "Boudreaux's Butt Paste". Anna and I just sat and laughed along with her as she kept repeating the name and blushing and laughing. Anna asked her and Anya confirmed that a great deal of the humor came from the fun of getting to say the word "butt" over and over!
Last story for the night. A game that I play with the girls sometimes is to sit them on my lap and pretend that I'm interrogating them (which always gets a good laugh from them). The questions I ask are usually basic personal and family information (e.g. What's your mommy's name?) or ridiculous questions with no real answers (e.g. What noise does red make?). Well, I was interrogating Esther and started asking her questions about her dad. When I asked her, "Does your daddy have a job?" She said "yes". I said, "What is his job?" and she replied, "He does the laundry." Anya overheard and said, "Yeah, he does the laundry and cooks and does dishes" and laughed because, unlike Esther, she knew that wasn't my "real" job. She then explained to Esther that I actually pastor a church in Kansas City. I was thankful for the reminder myself, since a lot of days I feel like all I do is cooking, cleaning and laundry! Being an at home caregiver is an incredibly high calling that requires more humility, patience, courage, energy, creativity, and determination than I personally have. I have nothing but respect and appreciation for my wife and all the ladies (and the occasional dad) out there who devote themselves entirely to the ministry of the home.

Family Pictures

2008-01-15T12:02:00.000-05:00

Isaiah is still all smiles & full of love. He can sit up on his own and has started crawling!

Esther is full of energy! She tells us, "Me love chocolate" and "Me want to play"!

#1 One thing that has helped Anya to take her medicine is for us to "take them with her".
#2 Anya gets really sleepy at night and fell asleep before I could give her the medicine.
#3 Here is the a picture of Anya taken yesterday, on her first day off steroids.
#4 Anya visits a clinic where they give her infusions of antibiotics or chemo in a playroom with comfy chairs and televisions.

Done With Steroids!

2008-01-15T11:17:00.001-05:00

Victory...Anya has now finished her steroids! As the doctors predicted, she is still feeling the effects from them. But we are hoping that she will be feeling better by tomorrow or the next day. She has already started to smile more, we are just waiting for her to have more energy, a decrease in appetite and to be able to sleep through the night.

Anya went in to the clinic yesterday for a preventative antibiotic but other than that she will have a break from treatment until early next week. At that time she will have blood work and if her counts are high enough she will be admitted for an overnight visit for chemotherapy. The drug they will give her can cause immediate complications so they like to keep her in the hospital to monitor her vitals, etc.

She also has developed some complications as a result of her digestive problems. It is very painful for her to use the restroom and the doctor is concerned about infection. Please pray for her healing in this area and for protection from infection.

Heartbreaking

2008-01-12T21:20:00.000-05:00

Hmmm...as I lay in bed with Anya a few minutes ago I wished I could communicate what it is like to have a sick child, what it is like to watch your child moan, whimper, and cry throughout the day and night for weeks on end. I wish I was a better writer so that I could capture in a few words the experiences we have with her, watching her suffer. And while I continue to remind myself that things could be much worse, that she could be gone or that could be sicker, for longer, it is still heartbreaking to see my daughter suffer so.

There have been times in these past few weeks when Anya was so constipated that all she could do was wander around the room, waddling and moaning. Other times she has had diarrhea until her little bottom was raw and she cried from the pain and from the embarrassment of having gone to the bathroom in her pants again. She often lays around for hours throughout the day exhausted and weak yet wakes two or three times every night, asking for food and movies, because she cannot sleep. She has gained a lot of weight, increasing a couple of clothing sizes. She has difficulty completing simple tasks like climbing up on the couch because she is so bloated. Just minutes ago she woke up, calling for me. When I lay down with her she asked for a story and as I spoke she whimpered and shook until she fell back asleep. And all of this is caused by the drugs that we expect to save her life.

Yes, things are better than they were in the beginning. And yes, things are better than they could be but we still mourn over the pain our little girl must endure and desperately pray for more of God's mercy on her young life.

Only five doses left!

2008-01-11T13:25:00.000-05:00

After taking her steroid dose this morning we let Anya know that she only has five doses left (tonight, and morning and night doses this weekend). I'm not sure who needed the encouragment more, her or us!
The past few weeks have been pretty grueling for everyone as the steroids have taken their toll on Anya's emotions and appetite. She is hungry almost constantly and her moods swing from playful to melancholy to fussing and crying in a matter of seconds. The steroids cause water retention and weight gain (because of increased appetite and decreased activity) so we have tried to limit Anya's food consumption as much as possible. However, "limiting" her means making her wait 30-45 minutes between refrigerator raids! It honestly seems as though she would eat without stopping if it weren't for our limitations. This resulted in some early trouble with constipation but we've got her regular again which has helped ease some of her discomfort. She still moves around and hurts in ways similar to a woman in her 9th month of pregnancy and manages relatively little activity and few smiles throughout the day.
But we are THANKFUL for the smiles and activity when they come and are glad that she seems to be resting better at night and throughout the day. We are also grateful that we have been spared from what could have been a much harder three weeks. The doctors have warned us repeatedly that this three week stage (Delayed Intensification) is often the hardest part of the treatment. While it has been very difficult and demanding it has not been nearly as hard as our first eight weeks. We are blessed that God has relieved her suffering and continue to trust and seek Him in the midst of this situation. We are definitely looking forward to next week when she will have a seven day break from medication and should get back to her own self and size again.
It's amazing for us to think that this ordeal has only been going on for seven months. It seems like much longer to us, our extended family, and our church family back in KC. We hope to be reunited with them very soon, probably in the neighborhood of March. I (Israel) intend to make one more solo trip home before our family goes back together and that trip should take place sometime in the next three weeks. I plan to drive in our minivan loaded down with stuff that we've accumulated here in order to not have to rent a moving truck when we go back as a family. Please continue to keep us and all those affected by our situation in your prayers. And please be sure to thank God for His provision and care for us, as we are unable to thank Him enough ourselves.

They don't call it "intense" for nothing

2007-12-26T08:24:00.000-05:00

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!

2007-12-10T17:49:00.001-05:00

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!

2007-12-06T15:00:00.000-05:00

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!

2007-11-29T22:36:00.000-05:00

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

2007-11-10T14:14:00.000-05:00

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

2007-10-25T21:59:00.000-04:00

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!

2007-10-22T09:06:00.000-04:00

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

Sister love!

For the love of Fall!

Suffering

2007-10-21T23:10:00.000-04:00

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

2007-10-17T09:47:00.000-04:00

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

2007-10-17T09:32:00.000-04:00

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

2007-10-08T23:24:00.000-04:00

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

2007-09-27T09:47:00.001-04:00

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

2007-09-19T10:42:00.001-04:00

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

2007-09-16T07:33:00.000-04:00

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

2007-09-11T09:59:00.000-04:00

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

2007-09-07T15:36:00.000-04:00

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

2007-09-07T13:49:00.000-04:00

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

2007-09-07T13:10:00.000-04:00

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!

2007-09-05T07:59:00.000-04:00

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

2007-09-04T09:41:00.000-04:00

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

2007-09-03T09:07:00.000-04:00

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

2007-09-03T08:57:00.001-04:00

Uneventful Week

2007-08-31T13:41:00.001-04:00

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

2007-08-23T11:20:00.000-04:00

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

2007-08-17T10:40:00.000-04:00

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...

2007-08-16T10:21:00.000-04:00

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

2007-08-15T18:34:00.001-04:00

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

2007-08-15T07:49:00.000-04:00

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.