Monday, December 15, 2008
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.
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.
Thursday, November 27, 2008
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?!
Friday, October 17, 2008
Thursday, September 25, 2008
Saturday, September 13, 2008
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".
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!
Sunday, September 7, 2008
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.
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.
Thursday, August 28, 2008
Monday, August 25, 2008
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:
Wednesday, July 30, 2008
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!
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.
Tuesday, July 8, 2008
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.
Monday, June 23, 2008
Sunday, June 8, 2008
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!
Tuesday, June 3, 2008
Monday, May 19, 2008
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".
Thursday, May 8, 2008
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!
Tuesday, May 6, 2008
"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!
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.
Sunday, May 4, 2008
-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.
Wednesday, April 30, 2008
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!
Thursday, April 24, 2008
Tuesday, April 22, 2008
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.
Sunday, April 20, 2008
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.
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.
Tuesday, April 15, 2008
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.
Monday, March 31, 2008
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.
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: firstname.lastname@example.org as the username, makeawish as the password to see pictures.
Sunday, March 30, 2008
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!
Friday, March 28, 2008
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!
Wednesday, March 19, 2008
Wednesday, March 12, 2008
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!
Monday, March 10, 2008
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.
Thursday, March 6, 2008
- 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
(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.)
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.
Tuesday, March 4, 2008
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.
Thursday, February 28, 2008
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!)
Tuesday, February 12, 2008
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!