Monday, April 30, 2012
We are happy to say that Day 1 of Round Two was filled with answered prayers!
Tonight we are thanking God for:
A peaceful night's rest
An overall smooth, uneventful day at the clinic and in our travels
A great count report for Elena - her ANC was 1520!
Elena's body tolerating today's chemo very well (She was only slightly nauseous on the way home.)
The company of friends at the clinic
Having a wonderful homecooked meal to come home to and for the friend who prepared it
The strength, energy, peace and patience that can only come from Him
All of you who prayed for us throughout the day
We will go to bed tonight comforted in knowing that He will continue to be our strength and shield and that you are holding us up in prayer. We are not in this alone.
Thank you for continuing to show us that!
Looking ahead to tomorrow:
There has been a little addition to tomorrow's schedule - Elena will be having both of her knees x-rayed before her clinic appointment. She has been experiencing knee pain for about a week. There is the possibility that it is being caused by a condition called avascular necrosis. It is basically bone deterioration as a result of poor blood supply. This can happen when children are on long term treatments involving steroids as well as some
kinds of chemo.
Please continue to pray for the following:
Pray that every minute of our day, from the time we leave our house in the morning until we are all reunited in the evening, goes smoothly.
Pray that every needed drug will completely do the job it is designed to do. This week the drugs are Etoposide (designed to damage the DNA that tells the cells how to replicate) and Cyclophosphamide (Cytoxan) (designed to attack cells in their resting phase).
Pray that Elena will not suffer any further negative side effects now or long term from her treatment. These lists are overwhelming.
Pray for clear x-ray images of Elena's knees.
Pray for the doctors to know what the next step should be after seeing the x-rays.
Pray for continued rest, strength, energy, peace and patience for all.
"The Lord is my strength and my shield; my heart trusts in Him, and I am helped. My heart leaps for joy and I will give thanks to Him in song." Psalm 28:7
Sunday, April 29, 2012
Please pray for a peaceful night's rest.
Pray for Elena's body to be strong and ready for the drugs she will receive.
Pray that every needed drug will completely do the job it is designed to do.
Pray that Elena will not suffer any further negative side effects now or long term.
Pray that every minute of our day, from the time we leave our house in the morning until we are all reunited in the evening, go smoothly.
Pray for strength, patience and energy for all.
"The Lord is my strength and my shield; my heart trusts in Him, and I am helped."
Saturday, April 28, 2012
Our week has been filled with its share of ups an downs. It has been filled with work, school, cooking, cleaning, laundry - regular every day life. It has also been filled with Elena taking medications every morning and night, flushing her lines, trying to figure out how to best try to bathe when your chest can't get wet, an appointment at the clinic, Elena's hands and feet peeling, feet and knees hurting - all daily reminders that life is not normal.
The best parts of the week:
*going to church together - all four of us! - a first since Elena's treatment began
*a night spent outside, enjoying a wonderful meal prepared by a friend, playing games, and jumping on the trampoline
*both girls going to dance class - another first since Elena's treatment began
*enjoying ice cream sundaes - all of the toppings arrived in the mail - all we had to do was add ice cream - a fabulous gift from wonderful friends!
*Friday night pizza and a movie
We are thankful to say we have been busy living.
Living our life.
Next week, we will still be busy living, it will just look much different. Elena begins round two of her treatment. We will be going to the clinic every day, Monday through Friday. While there, Elena will have to receive an hour of fluids, two hours of chemo and another hour of fluids. We are prepared for each day to be a long one.
Thank you for your prayers and your love!
We'll post specific prayer requests tomorrow.
"Give thanks to the Lord, for He is good; His love endures forever."
Saturday, April 21, 2012
So, what's next? Elena will continue to receive more chemo. Her next round of treatment will began April 30th. They hope this will kill the remaining cancer cells or at least keep these cells from becoming active before starting the high dose chemo leading up to Elena's bone marrow transplant.
Please pray for our upcoming appointment on Wednesday, April 25th.
Pray that we will be prepared to ask any necessary questions.
Pray for continued protection from anything harmful to Elena while she is back at school and church and trying to live a "normal" life.
Pray for daily frustrations and aggravations from things not being "normal" to lessen and for each of us to handle these daily reminders with grace and patience.
Please continue to pray for Elena's doctors to have God’s perfect wisdom in every decision they make regarding her treatment.
Pray that God will ultimately use all of this treatment to rid her body of cancer once and for all.
"Look to the Lord and His strength, seek His face always."
1 Chronicles 16:11
Wednesday, April 18, 2012
We arrived at 9:00 am and were quickly called to the back. There, we had to wait a long time. Elena's doctor decided to give her chemo today to treat her brain and spine. That order had to be placed and prepared. Elena ended up not being sedated until 11:50 this morning!!
By then, she was pretty hungry and tired of waiting. While sedated, they performed a bone marrow aspirate and the lumbar puncture to administer the chemo.
We will not know the results from today's bone marrow test for about a week. We were told that the marrow is sent to a lab in Seattle. This lab has very sensitive equipment and will be able to identify any MRD down to .01 % - pretty amazing!
Elena was also told that she can resume all regular activities including going to school!! She will have to continue to practice really good health habits to protect herself. Please join us in praying for a hedge of protection to surround Elena as she goes about her everyday life. She's thrilled, we're nervous!!
Elena's next appointment will be next Wednesday at 1pm. We will hopefully find out the results from today's test, as well as hear what our next steps are in terms of Elena's treatment.
So as we wait, we will enjoy each moment, each day and we ask for you to continue to pray for peace, patience, and joy to fill our hearts and home!
"But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me." 2 Corinthians 12:9
Tuesday, April 17, 2012
Saturday, April 14, 2012
Every minute, every hour, every day.
Wednesday, April 11, 2012
Tomorrow morning we will meet with the bone marrow transplant team at Egelston to discuss the next steps on this journey. Please pray for Elena's counts to continue to rise as she is still very susceptible to infection. Please also pray for calm hearts and clear minds for each of us as we hear and process all of the information forthcoming. Pray for the wisdom needed to make right decisions and for peace throughout the coming weeks so that we may find joy in every day.
"May He give you the desire of your heart and make all your plans succeed. May we shout for joy over your victory and lift up our banners in the name of our God. May the Lord grant all your requests."
Thank you for storming heaven on our behalf and for covering us in prayer!
"May He give you the desire of your heart and make all your plans succeed. May we shout for joy over your victory and lift up our banners in the name of our God. May the LORD grant all your requests." Psalm 20:4-5
Tuesday, April 10, 2012
"I have told you all this so you may have peace in me. Here on Earth you will have many trials and sorrows. But take heart, because I have overcome the world."
Monday, April 9, 2012
Thursday morning, we brushed out about 90% of Elena's hair! Crazy!
Friday morning, more hair.
Saturday night, Elena wanted to shave her head.
Here we are cutting her tiny ponytail.
Getting started - notice the laptop set up -
Uncle Steve in Colorado, decided to shave his head too.
They did it at the same time!
Elena and Uncle Steve
Elena and Melissa cutting Alyssa's hair
After watching Elena's ANC drop down to zero and remain there for a few days, it is so good to see it go back up. It was 70 this morning!
While this is still very low, we are hopeful that it is the beginning of the steady rise we need to see for Elena to be released from the hospital. We are being told that there is no magic number to reach, but it is more important that we see a steady trend upward.
Please join us in praying for this very event to take place as soon as possible so we can end our now 27 day stay at Chateau Scottish Rite.
"Be strong and take heart, all you who hope in the Lord."
Sunday, April 8, 2012
We do not understand why this is happening again to Elena, why we are spending yet another Easter in the hospital, why three out of the last four Spring Breaks have been spent here in the hospital, why must our family live apart for so long, why so much heartache and pain.
While listening to worship and praise music this morning, Elena started to cry. She said she wanted to be at church.
Thanks to the reminder from our friend, Stacee, here's what we do know:
We can experience the hope and joy His promises bring. Because Jesus died and rose again, we know this life is not all there is. We have the hope of heaven and that indeed is something to look forward to!
We are grateful for this reassurance!
The lyrics below are from a song by Casting Crowns.
They tell the amazing story of Christ and remind us of His sacrifice for all.
Glorious Day (Living He Loved Me)
One day when Heaven was filled with His praises
One day when sin was as black as could be
Jesus came forth to be born of a virgin
Dwelt among men, my example is He
Word became flesh and the light shined among us
His glory revealed
Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day
One day they led Him up Calvary’s mountain
One day they nailed Him to die on a tree
Suffering anguish, despised and rejected
Bearing our sins, my Redeemer is He
Hands that healed nations, stretched out on a tree
And took the nails for me
One day the grave could conceal Him no longer
One day the stone rolled away from the door
Then He arose, over death He had conquered
Now He’s ascended, my Lord evermore
Death could not hold Him, the grave could not keep Him
From rising again
One day the trumpet will sound for His coming
One day the skies with His glories will shine
Wonderful day, my Beloved One, bringing
My Savior, Jesus, is mine
Oh, glorious day
Wishing you all a wonderful Easter! Praising God for His son!
OH GLORIOUS DAY!!
"Jesus said to her, 'I am the resurrection and the life. The one who believes in me will live, even though they die;and whoever lives by believing in me will never die. Do you believe this?' "
Thursday, April 5, 2012
Elena's MRI results were clear! Praise God! No signs of blood clots!
Also, no headaches today either! Another praise!
As for our HLA typing results, we found out that Liv is only a 50% match.
We are also only 50% matches. So, the bone marrow transplant team will now look at the national bone marrow donor lists to find a suitable match for Elena. The search will take about a week. Once potential donors are identified, other confirmatory tests will have to be run. That process takes about 4-6 weeks. That would keep us right on track for the transplant to take place some time in June.
We also talked about Elena's counts. Currently, they are more up and down, rather than on a steady rise. Elena's ANC has gone from 0 to 20 to 50 to 20 over the past four days. We were told that this is normal. This afternoon, Elena received her final dose of chemo for this treatment round. We now need a steady upward trend in count recovery. This may take another week. Elena's ANC will need to be in the hundreds before she can go home.
We also looked ahead to our next steps. Now that Elena has completed her first round of treatment, she will have another bone marrow test in the next week or two in order to determine if she is in remission. Also, in the next couple of weeks, we will meet the bone marrow transplant team at Egleston for the first time.
Thank you for continuing to be a part of this journey!
Please continue to pray:
for Elena's counts to show a strong steady recovery
for the right person to determine the right time for Elena to go home
for the perfect donor match for Elena
for peace and patience in the waiting
for joy and contentment to be found in each hour and in each day
for sadness and frustration to not take hold of our hearts
for worry and fear to not creep in
for Elena to be in remission and for complete healing!
" We wait in hope for the Lord; He is our help and our shield. In Him our hearts rejoice, for we trust His holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in you. " Psalm 33:20-22
Wednesday, April 4, 2012
We do not know when we will hear the results from this evening's MRI. Hopefully in the morning when the doctors do their rounds.
Thank you for lifting us up in prayer today and every day!
We can feel them!
"God is our refuge and strength, an ever present help in trouble."
We are thankful that today is indeed a brighter day!
Elena got plenty of rest last night, her counts are beginning to rise - praise God! and her MRI has been scheduled for 4pm today.
Our sadness, frustration, fear, and disappointment are gradually being replaced with peace.
Today is Elena's 22nd day in the hospital. It is easy to see why these emotions were being felt.
Once again, it is a busy day here at the hospital.
Physical therapy this morning
a meeting with the child life specialist at 1pm
school at 2pm
an MRI at 4pm
Please continue to pray for peace and joy to be felt by all of us.
Please pray for today's MRI and for clear results.
"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12
Tuesday, April 3, 2012
They can't make room for her to have it done today.
They will try again tomorrow.
Please continue to pray:
for peace in the waiting
for Elena's anxiety - it is diminishing
for clear MRI results
for there to be no blood clots in Elena's brain
for joy and contentment to replace our sadness, fear, disappointment, and frustration - this is slowly happening this afternoon - Praise God!
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."
2 Corinthians 4:16-18
Due to Elena's continued headaches, her medical team has ordered an MRI to be done today.
One of the chemo drugs that Elena has received twice in the last thirteen days can cause blood clots. The doctors want to make sure that this is not the cause of the headaches Elena has been having.
for peace in the waiting - we do not have a
scheduled time for the MRI yet
for Elena's anxiety about having an MRI to end
for clear MRI results
for there to be no blood clots in Elena's brain
for joy and contentment to replace our sadness, fear, disappointment, and frustration
Proverbs 16:9 – “In his heart a man plans his course, but the Lord determines his steps.”
Monday, April 2, 2012
"Because of the Lord's great love we are not consumed,
Sunday, April 1, 2012
APRIL FOOL !!!!
While we didn't get to make it out of the parking garage, we did get to enjoy being outside and seeing all of the Lord's splendor! Elena commented on how green everything was and in seeing the beauty of "real" flowers growing on trees. It is amazing what you see when you just take the time to look. What started out as the beginning of a little April fool silliness turned out to be a pretty neat experience admiring God's handiwork.
Elena is almost done with day 4 of her second round of chemo and is doing very well. She is still experiencing some of the side effects of the chemo, but we are able to react in time and help ease her discomfort. Her counts are still low and her ANC remains at 0 which means we need to continue to monitor her potential exposure to germs.
Please pray for no fevers and for counts to rise so we may be released from this wonderful place as soon as possible following the completion of this round of therapy. Hopefully we can be home and reunited as a family by Easter! What a gift that would be!
"Rejoice in the Lord always, again I will say, Rejoice."