Family News

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

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

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!

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

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!

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?

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

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

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

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

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

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!

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

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

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

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

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

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

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

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

Daddy Daughter Date

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

Feeling Better

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

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

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

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

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

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?

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

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

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

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

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

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!

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

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!

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!

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

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

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"!

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

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

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

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

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)