Treatment Complete!

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!

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

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

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

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

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

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!