Thursday, March 29, 2012
Tuesday, March 27, 2012
When she has felt well, Elena has enjoyed some Just Dance in PT, a walk outside to the newly reopened koi pond area, and a little schoolwork. She is currently at a pizza and makeover party for teens here at the hospital. Praise God that she is feeling better so she can enjoy a little social time with girls her own age.
Please continue to storm the heavens for us!
"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13
Monday, March 26, 2012
Visiting with friends, going outside, and chatting with the wonderful nurses are definitely things Elena loves to do. They boost her mood and help rejuvenate all of us!
Thank you for continuing to call, email, or text if you would like to come and visit. We have to continue to take every precaution necessary to keep Elena away from any germs and viruses. This means keeping visitors to a minimum. It also means that visitors must be well and can not have been sick or have been exposed to anyone who has been sick in the last week.
Thank you for continuing to shower us with your love and prayers!
Please continue to pray:
"But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not grow faint." Isaiah 40:31
Saturday, March 24, 2012
We are so very thankful that we were all able to spend some much needed family time together. We enjoyed a picnic lunch outside, giggles, a little TV watching, a visit with some friends and dogs from Canine Assistants.
We also thank God for a pain free, nausea free day for Elena!
We are so very grateful for days like these!
To quote a favorite devotion, "Today has been filled with life. The life you (God) have given (us) to cope with, and to contribute to. And (we) wouldn't want to have missed it, not a single moment of it. Thank you, God, for this good day!"
Even in the midst of this, we are so very blessed! Thank you for blessing us with your prayers! We feel them! They fill us!
"Be joyful in hope. patient in affliction, faithful in prayer." Romans 12:12
Friday, March 23, 2012
Elena had a busy day today doing all of the things required to try and stay on top of things. She is still receiving fluids, IV antibiotics and oral medications. She is doing physical therapy to try to help prevent the side effects from the chemo from becoming worse. And she is keeping up with her school work all the while trying to remain a well rounded, fun-loving, happy-go-lucky, soon-to-be teenager! We think she is doing a wonderful job!!
We found out today, Day 9, that Elena is right on schedule for where the doctors thought that she would be. Her ANC has dropped to 10. This is the number that tells how well her body can fight infection. Normal is 1500 or above and safe is 500 or higher. Needless to say with an ANC of 10 and falling to 0, we need to take every precaution to keep Elena away from any germs or viruses. A fever now would not be good at all. We are sorry for those of you who would like to come visit Elena in the hospital, and for Elena because she loves visitors, but unfortunately, we have to keep visits to a minimum for now.
Thank you for understanding.
Thank you for your prayers and for your words of encouragement!
“But blessed is the one who trusts in the Lord, whose confidence is in him.” Jeremiah 17:7
Thursday, March 22, 2012
Elena's lumbar puncture went very smoothly. She was originally scheduled for 1pm but was able to be taken earlier. Everything went according to plan and she is back in her room having a well-deserved, and much anticipated lunch. She had not eaten since around 7:30 last night and woke up pretty hungry, so this was a long wait.
Thank you all for continuing to pray for all of the details connecting to make the big picture. We all know who is in the details and that God has it covered.
"Nothing in all creation is hidden from God's sight."
Wednesday, March 21, 2012
Praise God from whom all blessings flow!
Elena had a great afternoon yesterday! She had an hour of school instruction followed by crafts and games in "The Zone" and was even able to spend time with some puppies from the Happy Tails group who bring their dogs to the hospital to visit with the patients. After dinner she and I spent some good quality time just being together. And for those of you lucky enough to have someone willing to spend time with you, hopefully everyone, you know how special that time is.
Elena had as good a night of sleep as one can have being woken up every two hours. The nausea and soreness are still present, but manageable. The staff here has been wonderful at making sure that all of her needs are being met and even going above and beyond any of our requests to ensure that our stay here is pleasant. So far, other than the reason we are here, it has been.
Elena will have a lumbar puncture to receive chemo in her spine sometime tomorrow. Please pray for the procedure to go well and for Elena to handle the sedation without incident. Please also continue to pray for Elena's chemotherapy to perform its intended function, the removal of all cancer cells from her body, with minimal adverse reactions.
Last, but certainly not least, a big "Thank You" goes out to everyone for helping us remember that we do not have to go through this alone. That is not the case with all of the families we come into contact with around the hospital, and we are constantly reminded of how truly blessed we really are!! We love You!!
" I can do all things through Christ who strengthens me."
Tuesday, March 20, 2012
Please continue to pray for Elena's side effects to remain low and for her spirits to remain high.
"Rejoice in the Lord always; again I will say, Rejoice."
Monday, March 19, 2012
Each new day seems to bring with it new challenges. Whether it is a new side effect, a current side effect that worsens, or a new realization that this road is going to be a very long one. Elena has had very little energy today. She has dozed on and off for most of the day. Last night was a rough night in terms of pain, nausea, and emotions. It is scary to think that this is just the beginning.
We did have a few blessings sprinkled throughout our day.
A quick visit from friends who brought with them the currently craved food, homemade beef burritos and much needed hugs.
We also had a visit from Allison and her mom, Diona. They were the very first family we met after Elena was diagnosed. Diona helped answer many questions and calmed our fears in those first several months. Allison had an off treatment appointment today and they delivered dinner for us to enjoy here at the hospital.
Later, Sarah and her mom, Heather, came by for a visit. Sarah is our friend who also recently relapsed. Their family has ministered to us in so many ways. It was great for the girls to have a chance to talk. Sarah had many helpful tips for Elena regarding long hospital stays, dressing changes for the new external lines they both now have, and more. We are so thankful for all of these friendships! They are all blessings in our lives!
Please continue to pray for all of us!
"In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express."
Sunday, March 18, 2012
The emotional and physical needs we mentioned yesterday still continue.
Saturday, March 17, 2012
Things here have been moving steadily forward with new and familiar experiences alike. Elena's familiarity with the hospital and so many of the staff has helped to ease her transition here, but the newness or rebirth of these experiences has been a painful shock to a sweet girl who wants nothing more than just to be normal. The old and the new also applies to Elena's medications. She has received two types of chemo that she has had before along with three new ones. Unfortunately, she is experiencing some of the side effects from the 'old' chemo as well, along with the expected fatigue and nausea from both. Please pray for strength and stamina for Elena as we are in the beginning stages of a very long battle.
As I mentioned earlier, not all of Elena's struggles are physical. She is also trying to deal with the emotional side of the changes taking place, both with her body and in her life. She has made it known to us on more than one occasion that " I don't want this ", or " I just want to be home doing normal stuff ". All we can tell her is that we understand and for her to try to take things one day at a time. Sometimes those words are just not enough! Please pray for Elena's emotional well being and for the courage and determination to persevere.
Please also pray for Olivia. She is also dealing with the emotional side of living in and around different circumstances at home. She too must be wondering why things have to be the way they are right now. Your love will continue to help her hang on and move forward through this.
On a brighter note, Elena loves having visitors. It helps to break up the monotony of her day and gives her a little bit of "normal", though I use the term loosely with some of you! The only problem is that we need to make sure that she is strong enough and that her counts are high enough to protect her from any outside germs before receiving visitors, so we request that you call before stopping by.
Again, thank you for all you do for us and for storming heaven with prayers for our family!
"We are hard pressed on every side, but not crushed; perplexed, but not in despair"
2 Corinthians 4:8
Thursday, March 15, 2012
Tonight, she will receive three different kinds of chemo through her line.
While sedated for the CV line surgery, she also had a lumbar puncture. They took spinal fluid out so it can be tested for leukemia cells and she also received chemo to treat her brain and spine as a precaution.
She is now awake and has started to talk. Her voice is hoarse and her throat hurts from the tube. She still has not had anything to eat or drink since last night.
Thank you for continuing to storm the heavens for us!
Pray for there to be no complications with her newly placed line.
Pray for the incisions to heal quickly and not get infected.
Pray for all of us to stay mentally, physically, and spiritually strong.
There were definitely moments of weakness for all of us today!
Pray for Liv to stay strong too. Pray for her to be bold and ask questions when she needs to.
Pray for Liv to feel loved and cared for and not to get lost in the shuffle.
She did not go to school today as planned. She has been with us all day. We know that was the right decision for everyone!
Since we were all here, Dr. Lew went ahead and wrote lab orders for all of us. While Elena's was in surgery, we all had blood draw to be tested to see if any of us is a match to be her bone marrow donor.
Wednesday, March 14, 2012
All has gone well this afternoon. Praise God for answered prayers!
Her IV went in with no problems. She is now ready to settle into her room. She will soon begin to receive fluids and an IV drug to get her kidneys working. With chemo beginning tomorrow, they want her body to be ready to flush all of the toxins out of her system quickly.
She will also begin to receive Zofran, an anti-nausea drug.
That should be it for tonight.
Please pray for a peaceful night's rest.
Pray for her body to be strong and ready for all of the drugs she will begin to receive.
Pray that every needed drug will completely do the job it is designed to do.
Pray that Elena will not suffer any negative side effects now or long term.
Pray for strong minds and spirits for all of us.
Tomorrow's surgery is scheduled for 1:00pm.
Thank you for praying!
"We wait in hope for the Lord; He is our help and our shield."
We can't believe that today, 19 days after learning that Elena had indeed relapsed, we are on the front lines once again. As much as we wish things were different, they are not and we do not have a choice. We must begin this battle.
This afternoon, Elena will be admitted into the hospital.
Tomorrow, she is scheduled to have surgery to place her new central line at 1pm.
Today, we ask you to join us in praying for Elena's complete healing.
Please pray for each doctor and nurse that will touch Elena.
Pray that God will give each of them the skill, knowledge and expertise to handle every moment and decision regarding Elena's care.
Pray that God will be in charge.
Pray that every minute of our day will go smoothly and be overflowing with peace not anxiousness.
Pray that each of us will get the rest and encouragement we need, when we need it.
Thank you for praying for us, loving us and holding us up!
"So do not fear, for I am with you. Do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand." Isaiah 41:10
Tuesday, March 13, 2012
We were reminded of the story of David and Goliath. How David did not have the protection of all of the armor that traditional soldiers wore when going into battle. All he had was his stone, his sling, and the full armor of God. We know that this proved to be all David needed to defeat the giant. Everyone here was invited to take a rock as a reminder of this victory and to use to pray for Elena's victory over her leukemia. We know that we are surrounded by the full armor of God because of the love we felt from His servants who came out to let us know just that.
We are going to bed tonight with grateful hearts and with the strength that comes through your prayers from God alone.
Monday, March 12, 2012
On Friday, we headed to Unicoi State Park. There awaiting our arrival was the Yost family camper, completely set up and ready for us to move in for the weekend! Also ready for our arrival were the Vickers. They had taken care of everything else - food, snacks, drinks, firewood, glow sticks, s'mores and more!
Friday, March 9, 2012
“I am praying that God will calm those "ocean tidal waves" and provide you all with waves for boogie boarding...you know, the ones that are not too big, they can be unpredictable, they give you a good ride, and they always carry you right back to shore.
Through Him, may you be carried!”
We loved that analogy! We will be carried in this storm.
As days have passed since learning about Elena’s relapse and the plan has become clearer, the journey ahead seems extremely difficult. That same dear friend spoke these words to us:
“I talked to Elena last night. She shared all the medical plans with me. Although I had read the blog and spoken to you, I didn't say that I knew. I just let her share. I asked her if she was scared...she paused, and said "Miss Allison, I'm really not." I told her she was the bravest girl I knew and that this time they are going to get rid of that cancer. I believe that with all my heart.”
Knowing our anxiety, she went on to say:
“It feels like the tide is picking up and those boogie board waves I was praying so hard for have become more like gigantic Hawaiian coast waves. You know they still have crazy people that surf those waves, right?!? And as I said before, they are still carried back to shore. Maybe it's not exactly back where they started out (you know when the tide takes you down the beach and you have to walk all the way back to your chairs?), but as always, the waves carry you back. My ongoing prayer, may you continue to be carried by the only One that can truly carry it all.”
At times it does feel like a storm is looming. This weekend we are going to enjoy the calm before the storm. We are going camping!! Our friends made all the arrangements for us to spend the weekend in the North Georgia mountains. We will be staying in one of their fabulous campers. The girls are SO excited since when we do go camping it is usually in a tent.
Thank you friends for making this weekend happen for us and for taking care of all of the details!
Prayers for safe travel, for Elena to stay healthy and strong, and protection for all.
"Find rest, O my soul, in God alone, my hope comes from Him." Psalm 62:5
Thursday, March 8, 2012
While we are waiting for Elena to begin treatment, we thought we would share some ideas with you.
Right now, we need your prayers and friendship. Your love, support, and encouragement are a gift every day we walk this road. Once treatment begins, we will need more practical help such as meals, help with Liv, yard work and more. A friend has set up an online calendar that will allow you to sign up to help with those needs.
If you haven't received that link via email and would like it, let us know. firstname.lastname@example.org
For now, here are some things that you can do.
- PRAY! It really is the most important thing!
- Encourage her!! Just like before – cards in the mail, comments on the blog, and so on will help her fight this battle. Use your imagination for other ways to surprise her with some encouragement!!
- To Elena’s friends – she needs to know that she is still the same Elena. She’s just going through something hard. She doesn’t want to be treated differently or feel isolated because of her cancer. She wants to be normal…..to be silly, hang out, listen to music, watch movies, play games, etc… as much as possible with her friends and family. If you have questions and want to know more about things that are going on, ask her! She is very open to talking about it, and if she doesn’t want to for some reason, she will tell you and won’t be mad that you asked. If you aren’t comfortable asking her about it, that is fine too! Just be her friend!
- Travel this journey with her and the rest of us – check the blog
For Liv: No doubt about it - it is so hard to be the sister of a kid with cancer. It can often seem to the siblings that all questions and concerns are about the cancer child and not the siblings. Gifts and extra attention are sometimes poured out on the cancer child and not usually the siblings.
Here are some ways you can help Liv:
- Let her know that she is special, loved, and supported through notes, encouraging words, spending time with her – whatever you can think of!!
- When you see her, ask her how she is doing instead of asking for updates on Elena. (We’ll keep you updated on Elena through the blog.)
- Some of you will help Liv by letting her stay with you : ) Thank you in advance for making her feel at home!
- PRAY specifically for her. She can be scared, worried, tired, and sad too.
- We love encouragement too! Your blog comments, emails, texts, cards, hugs, and more help us know that we are not fighting alone and are not forgotten! We love hearing from you, and we appreciate your understanding when we can’t answer the phone or return calls, texts, messages, etc…
- Forgive us in advance if we are slow to send thanks or even forget to thank you for anything! Between managing Elena’s care, work, school, home, and Liv, we are bound to forget some things. Please know that EVERY act of kindness is GREATLY appreciated!
- PRAY for us too! It is hard to watch Elena go through so much and not be able to fix it or take it for her.
Thank you to all who are ready and willing to help in an way possible!
Thank you for your prayers and joining us in asking for complete healing for Elena!
"But I am trusting you, O Lord, saying, "You are my God!" My future is in your hands."
Monday, March 5, 2012
Today, we found out just how much worse.
Elena's doctor made it clear that a relapse is very serious and hard to treat.
He said that Elena's bone marrow is obviously producing leukemia cells and that what we did the first time wasn't successful. This time has to be different. Today he said, "We are not backing off. We do not want to undertreat it, we want to knock it out."
Even though we have been with Elena's doctor for almost three years, we just found out today that he specializes in ALL relapse. He not only specializes in ALL relapse, but he heads the national Children's Oncology Group task force on the subject! Needless to say, we have the best in our corner! What a blessing in this seemingly dark time!
Today, he presented what he believes to be the most promising plan for Elena.
The first month will involve high dose chemo in order to get her into remission. Once in remission, Elena would continue to receive chemo for the next two months in preparation for a bone marrow transplant. This is the ultimate goal of her treatment plan.
On Wednesday, March 14th, Elena will go to the clinic. From there, she will be admitted into the hospital. Her first three months of treatment will be at Scottish Rite. At which point, she would then be transferred to the Bone Marrow Transplant Team at Egleston.
On Thursday, March 15th, Elena will have surgery to place her line.
We are told that this time Elena will have to have an external CVL (central line) rather than an internal port. An external CVL means no swimming, no showers, and saline flushes at home! When Elena found out this information, she got tears in her eyes. She said that means that she won't be having a pool party for her 13th birthday. This will also be her fourth birthday in a row on chemo!!
While sedated for the surgery, Elena will also have a spinal tap to determine if leukemia cells are present in her brain and spine.
This is an aggressive plan. We know it will not be easy on Elena. It will not be easy on any of us. Once Elena is admitted into the hospital next week, she will be there for at least three weeks.
While today's information still seems overwhelming, we are happy that we have a plan.
We have hope.
We are so thankful that our friend, Stacee, was able to be with us today, to be another set of ears and much more. We are grateful that we came home to a wonderful homecooked meal waiting in our frig, including strawberry shortcake for dessert! There were even goodies for breakfast in the morning! Packages had also been delivered that held many fun surprises for all of us!
We are counting these among our blessings on this hard day.
Please continue to pray for us.
In the days to come, we will share specific prayer requests.
"So do not fear, for I am with you. Do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand."
Sunday, March 4, 2012
We are not where we want to be.
We are on a path we do not want to be on.
Today, we feel numb.
Today, we can't think.
Since we can't think, our amazing friend, Stacee, graciously agreed to write a prayer request for us to post:
Please pray for Elena’s appointment tomorrow. She will have an EKG/echocardiogram at 9:30. She will also have her counts checked again. Pray that the EKG and echocardiogram will show a perfectly healthy heart and that her counts will be stable. We will then meet with Dr. Lew to go over the options for treatment. We need wisdom and clarity to decide the best option. Please pray that the best treatment will be clearly revealed.
“In Him and through faith in Him, we may approach God with freedom and confidence.” Ephesians 3:12
“For this reason I kneel before the Father, from whom his whole family in heaven and earth derives its name. I pray that out of his glorious riches he may strengthen you with power through his spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you , being rooted and established in love, may have the power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge – that you may be filled to the measure of all the fullness of God.” Ephesians 3:14-19
Thank you, Stacee, for thinking when we can not, for having the words to pray when we no longer know what to say, and for closing with perfect verses.
Thank you to everyone who has told us that they are here with us and for us, no matter what.