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News, Inspiration and Insight as we pray for Mary Evelyn
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for the Akathist to the Queen of All and listen here to the Akathist
sung.
Also check out the Kings home page as well:
http://caringbridge.org/visit/maryevelynking
Tuesday, May 16, 2006...this is Mary Evelyns' last day of Kemo therapy........
Tuesday, April 18, 2006
Dear Father Jacob,
Remember the day when Mary Evelyn blew a dandelion and made a wish that she could have a "pony" of her own one day (meaning her own baby)? This morning Dr. Natia told me that because of the change in plans, they will be mostly focusing on the chest area and don't expect to damage the ovaries after all. There might be some slight damage, but nothing like they thought before.
Isn't that a little miracle? I do realize that there probably already has been some damage due to the intense chemo, but this is an answer to prayer and a relief to me. God is so merciful to us all, we can't always see it, but here is a quick and direct answer to prayer! We had asked for your prayers about this and also brought her to Father Jacob one night after Vespers. He annointed her tummy with Holy Oil, wrapped her in St. John the Wonderworker's cloak and prayed for protection for her.
Our appointment went very well and it was also nice to find out that the doctor in charge of Mary Evelyn's radiation is Orthodox and goes to St. Mary of Egypt.
I know they pray for Mary Evelyn in each service there and here one of their members is directly helping God heal Mary Evelyn.
Mary Evelyn continues to feel fine and is very active.
She is looking forward to Pascha, just like the rest of us. She will begin her radiation on Bright Monday.
Love, Edna
Tuesday, April 4, 2006
Dear Father,
Mary Evelyn's radiation has been postponed because they have decided to radiate a larger area and give her a more aggressive treatment. Mary Evelyn needs time to to build up her strength so she can withstand the treatment. The plan has been to aim the radiation at the pelvic area where the main tumor was as well as the spine. The new plan is to also get her chest where there had been large fingers of the tumor near her aorta. The radiation wil hit a large portion of her spine. The risk of relapse outweighs the potential
side effects to her heart and spine. The radiologist
has just returned from a conference where they discussed new findings and she and her colleagues feel this will be the best way to proceed. Mary Evelyn will see her oncologist for weekly count checks until her levels are normal. That may take several weeks.
We appreciate everyone's prayers and wanted to let you know that treatment is on hold for now.
Mary Evelyn can just enjoy her life for a little while and get back into the fight when she is stronger. In the meantime, I've noticed that she is much more active than any time in the last year and it is a great joy to see her lively personality blooming.
In Christ, Edna
Monday, March 27, 2006
Dear Father,
Mark and Mary Evelyn are on their way back from her visit to the AFLAC clinic. Dr. Katzenstein told Mark that Mary Evelyn came through the BMT like a superstar and looks great. Her counts are still low, as would be expected, but they are not critically low. He will see her once a week during the radiation process just to keep an eye on her counts as she goes through this.
Her tubies will be removed when the radiation is all done.
Mark asked him if there will be another scan and the doctor said they will do one after the radiation is finished. Mark asked him if she would be likely to be in remission at that point and he said you can consider her to be in remission now. Apparently, they don't think there should be any live cancer in there right now, but the radiation will make sure it's all gone.
I wish it were possible to just skip this part, but it's not. He also said that the radiation will damage her ovaries and that she will probably need hormone therapy when she is a teenager. We'll be lucky if she makes it to that point, but it is hard to see a little girl lose the chance of having babies. We will anoint her with holy oil from the Queen of All icon of Mary each night on her abdomen and pray that God will protect the good cells. (We'll wash her little belly each morning before radiation because the skin must be perfectly clean.)
Mark asked also if her statistical chances are better now that she's made it this far. Doctors don't seem to like questions like that- they always say every case is unique- but he did say that 20% of the children with her diagnosis don't make it to transplant and that the milestone they look for is making it two years after transplant without a relapse. Then you can begin to feel that you're out of the woods.
I'm very excited that we can consider her to be in remission. I think I'd be more excited if there had been a perfectly clear scan and a big remission announcement, but I'm glad I can think of her this way. She certainly looks and acts like a "regular girl without cancer!"
Thanks, Edna
__________________________________________________
Friday, March 24, 2006
Dear Father Jacob,
Mary Evelyn's blood counts have risen and now she is finished with the BMT restrictions! We are so thankful. It is a great joy to be able to take her places and for her to be able to leave our house without a mask on. She went to preschool this morning and had a wonderful time. She told me she wanted to be a regular girl without cancer. A regular girl who goes to preschool and doesn't wear a mask. Tonight we are planning to bring her to church for the Annunciation Vigil and Sunday we'll bring strawberries for everyone because Mary Evelyn wants to share stawberries with the whole church now that she is allowed to eat them again!
The next step in her treatment will be three weeks of daily radiation to kill any remaining cancer. They will target the area in her pelvis where the tumor originally was and also a spot near her spine which the surgeon wasn't able to get to when he removed the tumor. There may still be a small spot of cancer near her heart, but it is too dangerous to use radiation in that area so we will pray that the chemo already got that spot. The radiologist expects to be able to protect Mary Evelyn's kidneys, but not her ovaries. Radiation, like everything else, can have a lot of nasty side effects including causing her spine to grow differently in the area they radiate and also causing a new kind of cancer.
I was very upset after meeting with the radiologist because it is so hard to think of Mary Evelyn still having cancer inside her. Of course, they don't know if she does or not, it's just based on experiences with other children with the same diagnosis. I think the meeting reminded me of how slim her chances are, medically speaking. But we know that she also has incredible prayer support and we trust that God will protect her in the way He sees fit.
Mary Evelyn enjoyed meeting the radiologist, who was very sweet to her and a lovely person. She explained that we will come in Monday through Friday at 7 am. She will be strapped to a table near a huge machine. Mary Evelyn thought the radiation machine looked like a space ship. She will be left alone in the room and the table is programmed to move her around so the radiation will hit the correct spots. If she can be brave enough to do this awake, it will be very fast and she'll feel pretty good for the day. If she has to be sedated each time, it will take hours and she'll be grouchy and feel a little sick later. Mary Evelyn says she is brave enough to do it and I hope she can. I thought she could bring in a little icon of the Theotokos to help her. Mary Evelyn was so comfortable with it all, she held hands with the radiologist and hugged her goodbye! I wondered if Mary Evelyn was already getting a little extra grace to help her be brave during this last ordeal.
Please continue to pray for her healing, courage and for the doctors to have wisdom when they select the spots to radiate. We'd better pray that she doesn't wiggle at all if she tries go through this awake, too!
Yesterday was a very special day for Mary Evelyn. Sheila Aldridge brought over a special surprise for her. It is a portrait of Mary Evelyn as Belle from Beauty and the Beast. That is Mary Evelyn's favorite movie and she was thrilled. It is a lovely painting and depicts Mary Evelyn little older than she is, with lovely Big Girl Hair! She has a joyful expression and is with the Beast, who is gazing lovingly at her.
When Mary Evelyn first saw the painting, she put her hand over her heart and said, "It's me, and the Beast is you, Daddy!" I thought that was very sweet, and actually, I’ve seen that expression on Mark’s face as he looks at Mary Evelyn. Mark, Sheila, Mary Evelyn and I celebrated with a little tea party and Mary Evelyn played hostess. She kept refilling our plates and offering us tea. She was glowing.
It is a great blessing to see her feeling so well and being so sweet and happy around the house. We know that God has shown great mercy to her. I think back to the beautiful unction service last fall when she was annointed by seven priests and I know that whatever happens, she can rest in His hands. Mary Evelyn has a lot of faith that she will be healed and frequently tells me not to worry. She'll kiss me and say, "I'm getting all better, mommy, don't worry".
In Christ,
Edna
Tuesday, March 20, 2006
Mary Evelyn is home from the hospital and improves daily. She is still on the BMT diet and must wear a mask when she leaves the house. Thankfully, she is not on any medications anymore except one antibiotic she is finishing up. Her immune system will be weak for a long time but we hope she'll be able to play with her friends, go back to church, and attend preschool soon.
Two of the foods she's not been allowed to eat are "grapies" and strawberries and she wants to have a party at coffee hour and bring them to share with everyone when she can eat them again. She is looking forward to church and has cried because she couldn't go.
You can see from the photos that she is joyful and ready to play. We are so thankful to have this time with her as she recovers. It's exciting to watch her growing, gaining weight and maturing as her body rebuilds those bone marrow with those precious cancer free stem cells. Lent is an especially beautiful time of year to watch her come through this time of suffering into the joy of a new life.
Mary Evelyn will be finishing her treatment with two weeks of daily radiation and six months of drug therapy. We are still waiting for the MIBG scan to be scheduled. This test will show if any live cancer remains in her body. As I watch her thriving, I'm hopeful that it will be clear and she will finally be in remission.
We thank you and everyone for your loving, faithful prayers. Praise God for bringing Mary Evelyn through this treatment so far and for her current health and recovery!
Tuesday, February 21, 2006
Dear Father Jacob,
You would have loved seeing the joy on our nurse's face this morning when she told me that Mary Evelyn's white blood cell count has tripled since yesterday!
This is very good because it shows her little body is doing a great job of building the new cancer-free cells that will restore her health.
She is still feeling sick and spitting up mucus, unable to eat or drink, but that should all improve very soon. They are also reducing her medications.
She only has four pumps on her IV pole now. She spends most of her time sleeping while the miracle happens inside her, but when she's awake, she can go out for her laps around the nurses' station, watch movies and smile a little. She is expected to leave the hospital to go stay in Meg's nearby apartment Thursday evening!
The photo shows her doing her laps on her tricycle.
She had a fever of 103 that afternoon, but she isn't stopped by that! I'm so thankful that God has blessed her with the strength and fortitude that she needs to fight this illness.
We are so thankful for God's mercy as He has answered our prayers and blessed Mary Evelyn with healthy new cancer free blood cells. It's amazing to think of what is happening inside of her, even now. We are so grateful for God's grace and the wonderful medical care she is receiving.
love in Christ,
Edna
Saturday, February 11, 2006
6
Dear Father,
We are so thankful that Mary Evelyn has had her transplant. She has suffered through a week of intense chemo. She had felt very sick but has still maintained her sweet disposition and has worked hard to do her "Jobs". Her hardest jobs are taking laps and taking medicine. To make the laps fun, we've created all kinds of scavenger hunts. Yesterday I hid lollipops for her to find. She feels so weak, it's hard to convince her to get up and walk but that will keep her lungs clearer. Throughout each day, we have been busy with throwing up, changing clothes and bedding, lots of diaper changing because she gets lots of liquids through the IV, seeing doctors and nurses, and getting medicine through her central line. She has six separate pumps on her IV pole. Every time she leaves her room, she must wear a mask and she can only leave to take laps. Her skin is also itchy and looks sunburnt. She is very uncomfortable, but she is getting the best possible care and I can tell that the doctors and nurses love her.
I remind her that the angels are taking care of her too. She trusts God to heal her and wanted to wear a necklace that has a gold icon of the Theotokos and the medal of Saint John the Wonderworker on it. The Icon of the Theotokos came from a sweet woman who met us at the Healing Unction service last October. The woman said it was her mother's but wanted to give it to Mary Evelyn. She said the icon had been blessed in many monasteries in Russia. We are sure that the Saints are interceding for her and that God's taking care of her.
It is wonderful to have reached the second transplant because we know we only have a couple more weeks of watching her suffer like this and then we pray she will never have chemo again.
The transplant itself is very simple. The chemo has killed off her blood cells to the point that without the transplant, she would die. The transplant is simple injecting her with her own stem cells. The stem cells were collected last November and frozen. The chemo she was given this fall helped the stem cells be free of cancer so that her body can use them to create new blood. It takes about 10 days for that to begin so this is a critical time. Sometimes, the body rejects the new stem cells and that is dire, but usually when they use the child's own cells, that is not a problem.
The injection takes about 10 seconds. It's the miracle that takes place in her body afterwards that is so dramatic.
You can see by the photos that she was feeling very sick yesterday. She spent most of the day lying in bed with that sad, suffering expression on her face.
Today she is also very sick and is now wearing an oxygen mask because her levels are low- 90% instead of 99-100 the way they usually are. The doctor just told Mark that today and the next few days are really the most critical time in this BMT. She has no immunities and is very vulnerable. She has a lot of mucus in her lungs and that is causing the low oxygen levels. They will try to correct that. The main fear is that she could develop pneumonia.
I had a nightmare Thursday before the transplant that the gram negative bacteria she has turned deadly and that the nurse told me there was no hope. I woke myself up quoting scripture- I wish I could remember which one- something about fear and love and healing.
.
I was not upset when I woke up.
It is frightening to see her like this, but we know that God is more powerful than any disease and that He is cradling our Mary Evelyn in His loving arms.
Please continue to pray fervently for our sweetie. We thank you for all that you, the nuns, the parish and the community who reads the web page have done for our family.
In Christ,
Edna
TUESDAY, January 17, 2006
Tonight we went to the kick-off meeting for the Fayette County chapter of Relay for Life. Relay for Life is a fundraiser for the American Cancer Society.
Mark was asked to give a talk about our experiences with childhood cancer and Mary Evelyn was selected to be this year's torch bearer. She was going to light the torch tonight and will carry the torch at the race in May. She had been nervous about it before we went and had asked a lot of questions such as, "Will it burn me? Is it a ghost?". We tried to explain it to her and she was excited by the time she got dressed to go. As she got dressed, she said she felt like Cinderella.
Mark was introduced along with Mary Evelyn so he held her throughout his talk. He spoke about how Mary Evelyn was diagnosed and her treatment. It was hard for me to hear the story again. It's all still too new. But, he did a great job and many people seemed touched by our story.
The people involved in the Relay for Life are very enthusiastic and dedicated to helping with cancer and it was inspirational to be around them. I especially enjoyed meeting Meghan, a twelve year old survivor who battled cancer when she was Mary Evelyn's age. You can see her in the photo holding the torch with Mary Evelyn. She actually lit this year's torch for Mary Evelyn as it was raining and just too big for our little girl. Mary Evelyn enjoyed herself and told us she wasn't scared or shy at all.
* Mary Evelyn's stunning outfit was given to her from her Godmother who brought it all the way from Las Vegas!
THURSDAY, January 12, 2006
Mary Evelyn continues to make excellent progress in her battle with cancer. Each day, she seems more healthy and content. She is joyful and full of life.
Her doctors are pleased and even surprised by her progress. We had been told that if everything went perfectly, she’d be out of the hospital fourteen days after the transplant. Instead, she left on day 11, so it was better than perfect!
However, she is not out of the woods yet. Sadly, neuroblastoma is a very aggressive cancer and even when she gets through both bone marrow transplants, it won’t mean she is cured. Most children relapse and then there is much less chance of a cure. It does giver her the best chance at being cured, and that is a lot to be thankful for. We are confident that she is in God’s loving hands and we continue to ask for His mercy in her life.
She feels surrounded by God’s love and the prayers you are praying for her. It has helped her to actually see people interceding for her when we have all prayed for her after the services. It is a lot of special attention, but she is aware that she is fighting for her life, and knowing that so many people pray for her has given her much more strength and faith. She says the saints depicted in the icons are praying for her- even the little ones in the backgrounds who I couldn’t name! Having the experience of people in church praying for her, the messages on her web site, the cards people send, and her own personal prayers with the icons which she can hold, gives her a more tangible faith. Mary Evelyn says God is healing her because of all the prayers of "her" people. A few weeks ago when she thought we were saying she wasn’t getting better she said, "Don’t take away my prayers, I am getting better!"
It is a beautiful thing to know that people are not only praying for her, and are also holding themselves to a higher standard to keep a greater degree of spiritual purity in their lives as they pray for Mary Evelyn. The night she was diagnosed, the pediatric oncologist who was called in from home to describe her cancer to us said that God would be glorified through this. He is being glorified in more ways than I can imagine. The doctor couldn’t promise us a healing, and we don’t know what will happen in the years to come, but we do know that as long as she is in God’s loving care, she will be alright- even if He takes her to heaven. That is the greatest comfort, although we’re hoping she will be cured and get to live a long and fulfilling life. In the meantime, as we fight this battle, it’s a blessing to know that she is inspiring people who don’t usually pray to pray, and inspiring others to strengthen their prayer life.
Today, I took her to the neighborhood park and she played for a little while. She tires easily and was glad to be back home. Her little body is bust rebuilding lots of cells as she gets ready for the second transplant which will be in early February.
Following that, she will have two weeks of radiation and then the scary parts of her treatment will be over! She will be taking acutane for six months to help prevent a relapse. She will have regularly scheduled scans to make sure the cancer doesn’t sneak back up on us. We ask for your continued prayers as her body heals.
Love,
Edna
WEDNESDAY, January 4, 2006
The Lamb by William Blake
Little lamb, who made thee?
Dost thou know who made thee?
Gave thee life, & bid thee feed
By the stream & o’er the mead;
Gave thee clothing of delight,
Softest clothing, woolly, bright;
Gave thee such a tender voice,
Making all the vales rejoice?
Little lamb, who made thee?
Dost thou know who made thee?
Little Lamb, I’ll tell thee,
Little Lamb, I’ll tell thee
He is called by thy name,
For He calls himself a Lamb,
He is meek and he is mild;
He became a little child.
I, a child and thou a lamb,
We are called by His name.
Little Lamb, God bless thee!
Little Lamb, God bless thee!
I feel so thankful right now, I can picture Mary Evelyn as a little lamb being lovingly cared for by God through His tender mercy in keeping her safe through this BMT and through the thoughtfulness and love of so many people in her life- the doctors, nurses, family and friends surrounding her with care and prayers.
After hours packing up the room, we left the hospital yesterday and came to my friend Meg’s apartment. We can’t go home because we have to be near the hospital in case she gets a fever. Fevers can be a sign of an infection which can be deadly if not treated right away. Mary Evelyn was so thrilled! Meg is the mother of her friend Gray and she called, "I’m coming Gray, Here I come!" I know she was disappointed that he wasn’t there, but she showed us his photos.
She ran around exploring said she was so happy to be free from the IV pole. She is playing with her aunt Cathy today and is feeling well and is back to her normal, happy sweet self. No more growling!
It is unusual for a child to go through the stem cell rescue this well, and to get to leave the hospital so early and with so few medications. The only medication she has to take is GCSF- that’s to bring up her white blood count. She also gets IV fluids at night. Her skin is no longer peeling and her appetite is returning- although she’d eat Oreos all day long if I let her! She has a lot of dietary restrictions
– I have to make her foods or she can have frozen dinners.She has to wear a mask any time she leaves the apartment- even in the car or outside. She can’t go to any public places for a long time. No fun trips to Target! She can’t even go to church. Her immune system will take six months to recover.
As I read the "instructions for going home" packet, I realized that this is much more serious than I had thought. I will have to be very careful and watchful.
I also realize more and more how blessed we are that she is feeling so well. I almost felt guilty that it has gone so well for her ( because I know others suffer so much more) but my sister reminded me that it is good for other people to see that someone can go through this without complications so they will feel hopeful about their problems, too. Maybe someone reading this also has a child with cancer and now they won’t be as frightened of the BMT. Or maybe there’s something completely different and by seeing God’s grace in Mary Evelyn’s life, you can have courage to face your own issues.
It’s good to know that ultimately, sometimes we can be like a little lamb in the arms of God.
Thursday, DECEMBER 22, 2005 11am EST
Mary Evelyn getting ready for her bone marrow transplant tomorrow...she had her hand on her heart
just like St. Seraphim of Sarov used to have when he prayed.....
MONDAY, DECEMBER 12, 2005 7PM EST
We had a special church service tonight in honor of St. Herman of Alaska and of Saint Lucy, usually called Saint Lucia. Anna Lee, one of the sweet young girls in our church, was representing Saint Lucy in a special part of the service. Anna Lee wore a wreath on top of her head with candles in it. Anna Lee called us before the service and asked if Mary Evelyn could come and be one of her attendants in the service. The girls all wore white dresses with red sashes and it was lovely. Mary Evelyn wore the lovely creamy white dress the nuns in Greece sent her. She had a sweater on top that happened to look really nice with it. There are beautiful photos of this on the church's website!
Father Jacob prayed a special prayer for Mary Evelyn's healing at the service. He prayed for Saint Lucy and Saint Herman to intercede for her healing. Anna asked Mary Evelyn to help her pass out the special sweet rolls to each person in the church.
Saint Lucia was said to bring light and bread to the poor. She became a Christian in the third century and gave all of her wealth away. She died a martyr's death under Diocletian. She is especially honored with elaborate celebrations in Sweden and Norway.
Father Jacob said tonight that the Roman government tried many times to kill Saint Lucy but her faith was so strong they couldn't kill her until she chose to let them. I liked the thought of faith like that. It made me think about the cancer trying to get our sweetheart, but through all of our prayers, faith and the mercy of God, she is getting better!
Edna
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SATURDAY, DECEMBER 03, 2005 11:29 AM, CST
What a roller coaster of a week! We were awakened at 3:00 this morning by Mary
Evelyn shaking in her sleep. We thought it was likely a nightmare, but when we
woke her up, she kept shaking, and she said she felt cold and dizzy. We took her
in to the emergency room, and by that time she had a fever as well. It looks
like she has an infection, but the good news is her blood levels are very high,
so she is well positioned to fight off whatever it is. She has been admitted,
and they are monitoring her today. The Festival of Trees is having an exclusive
event tomorrow morning for 25 invited guests from the cancer center at Egleston,
and Mary Evelyn was to be part of that event. We are hoping she may still be
released in time to go.
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BAD NEWS TURNED GOOD NEWS BY GOD BY GOD'S GRACE
(READ THURSDAY THROUGH SATURDAY)
FRIDAY, DECEMBER 02, 2005 12:07 PM, CST
We just spoke to Dr. Katzenstein. He showed yesterday's MIBG scan to severla
experts and each one said something like, "spots? What spots?"
None of them thought there was a real problem. We are proceeding with the Stem Cell Transplant. She will be admitted on December 12th to begin the high dose chemo with transplant day scheduled for the 19th. I hope she's hope for New Years, but don't know how it works. We will be here Monday for lots of test and conferences. The schedule has something different for each 1/2 hour. It's so WONDERFUL!
Thank God! Janice and Vanessa are with me and I am taking them out for lunch
to celebrate! Thank you, this is such an answer to our prayers. Thank you for
all your loving phone calls and messages. We are so blessed by all of you.
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THURSDAY, DECEMBER 01, 2005 04:30 PM, CST
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| The MIBG results
were not as good as we had hoped, but not terrible either. It showed a
few spots of live cancer, but some of the spots were questionable. Some
spots were visible on one picture, but not on the more detailed picture.
There was one big spot that they hope was just poopie. We're to give her
a laxative tonight and then she will go back tomorrow to have new
pictures taken to gather more information. Meanwhile the team of
doctors will confer and a decision should be made after the MIBG
tomorrow regarding whether she will be able to do the standard treatment
of two stem cell transplants or if she will be sent to Philadelphia for
the "Big" MIBG treatment. The MIBG therapy involves so much radioactive
fluid injected into her that we will not be able to touch her for three
days. She'd be in a room by herself and we'd only get to look at her
through a window. After that, she'd have one stem cell transplant.
Either treatment is difficult. The fact that she still has live cancer
makes her ultimate cure less likely, but not impossible. Maybe the
pictures tomorrow will be more encouraging. Nothing is impossible for God. That said, I am very sad. Mark is doing better than I am. I'm so glad he has such a positive disposition and his faith helps me. It was a great blessing for me that he was able to be with us for the meeting with the doctor because I was teary enough even with him there. She is happy, unaware of all this and I think it might be a good night to start decorating for Christmas. Or maybe not. 2 hours later: Sometimes when we're weak (like I feel now), it gives us the chance listen to other's wisdom and to lean on them in ways we can't otherwise. Each person I've talked to in the past two hours has blessed me in a different way. This is from Father Jacob: There's no bottom falling out, just paving the way to heaven and we're all going there, one way or another, now or whenever. This transformation that Mary Evelyn is going through is transforming everyone around her, all of us. We're not worried about her soul, we know she's in the arms of Christ......this is a process of healing, one way or another, and each day we'll see what God will do next ..... He said a lot more, but I couldn't write it fast enough! Angela, Mark's sister reminded me of the little ways in which God is providing for our needs, even to the use of a beautiful apartment right near Egelston. Surely if He's providing in those many ways, He is taking care of our sweetie.We sure know he hears about her all the time! Also, I remembered that after our appointment today, when we were waiting to talk to someone in nuclear medicine, a lovely woman looked at Mary Evelyn's little bald head and told me that she was in ME's shoes five years ago, and now she's fine. OK, that isn't like an audible voice from heaven, but it's nice! |
Saturday, November 26, 2005
Mary Evelyn was taken Communion today. When we arrived she and her father Mark were just getting up. Mary Evelyn was in a fine mood. We all noticed that there were no IV's in her and that she moved around very easily. Mark believes that she may be able to go home today. Here are some pictures of her in her bed and with her Dad:
Thusday, NOVEMBER 24, 2005
It is a wonderful Thanksgiving Day! Mary Evelyn continues to make good progress. The nose tube was removed yesterday and she will be allowed to start eating today! The bandage over the incision was taken off this morning. It does look like a smiley face and although it's large, it looks like it's healing well. She has been in pain( gently crying "owie, owie"), so has had more morphine, tylenol and continues with an increased dose of the epidural. Mary Evelyn also has a little fever. She has not been able to get up yet, so today will use a lung exercising machine to help her breathe deeply and help prevent pneumonia. That may sound scary, but it won't be. I expect a lot of improvement throughout the day.
We will celebrate Thanksgiving here with a dinner brought in by CURE Childhood Cancer for everyone on the AFLAC floor, and a basket sent by Mark's family.
I hope each of you have a wonderful day and may God bless you and your families.
2:46 Uncle Frank and I took Mary Evelyn to the garden in a wagon. It's a lovely, sunny day and she must have enjoyed it, although she has given me several resentful looks. I think she was afraid of getting out of bed. Her fever is gone and it turns out the lung machine is something you suck air through to make a bird go up into a little tree. It looks like a toy, but so far, she hasn't been willing to use it. I have gotten her to blow bubbles and that accomplishes the same thing- getting her to breathe deeply to prevent pnuemonia. She is napping in the wagon now.
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Wednesday, NOVEMBER 23, 2005 (after midnight) They surgeon just finished talking to us. He was able to remove about 95% of the cancer! He said it was an especially difficult operation, so thanks again for your heartfelt, faithful prayers. There were no complications and the surgeon seemed pleased. The mass he took out was about the size of a pear. She is awake, moving about a little, and telling the nurses to "quit it" as they keep doing things to her. She has an extra IV, a tube in her nose and a "smiley face" incision on her tummy. We will see her in about 45 minutes, in her room, not in ICU! The surgeon said we will be able to hold her and talk with her. Her godmother is staying with us to see her and I'm so happy I don't know what else to write. Love, Edna TUESDAY, NOVEMBER 22, 2005 02:22 PM, CST--Mary Evelyn is in surgery right now to remove the tumor and the doctors say things are going well...just received a call from Edna...
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| I
wanted to share these e-mails with you:
"I was praying for Mary Evelyn this morning and I came across a
couple of things in the Psalms. Psalm 72 is about an elderly
believer asking for God's deliverance. Something about it made me
think of Mary Evelyn..."for you are my hope, O Lord God; You are my
trust from my youth. By You have I been upheld from birth; You are
He who took me out of my mother's womb. My praise shall be
continually of you." It brought to mind that she is a miracle from
the beginning and that her trust in the Lord is exceptional.
I skipped to Psalm 92 (another Psalm of praise to God and trust in
His deliverance). I read this: "The rightous shall flourish like a
palm tree, he shall grow like a cedar in Lebanon. Those who are
planted in the house of the Lord shall flourish in the courts our
God. They shall bear fruit in old age; they shall be
fresh and flourishing, to declare that the Lord is upright."
Earlier in this psalm it says that the "wicked spring up like
grass....that they may be destroyed forever." Again, I couldn't
help but think of the cancer in her body that sprung up just like
that. It's just feeble grass....she's the cedar of Lebanon! And
she's in His hands today."
That is from my dear friend Leslie. The following prayer is from my
sister, Jennie:
"Let's pray - Dear God, thank you for being with Mary Evelyn all
through the day and evening as she undergoes surgery. We love
you and trust that you know what is best for her. Guide the
doctors and nurses with wisdom beyond their means, and direct
their hands and tools. Help them to be steadfast in their
diligence to remove the tumor. Bless them and may the hours go
smoothly. We pray for Mary Evelyn that she will enveloped in
your love and peace and calmness. Please strengthen her body and
bring complete healing. Comfort Mark and Edna and Thomas as
they wait. We thank you Lord for all that you will do today. In
Jesus' precious name, Amen."
We are so thankful for you all and the blessings today has
already brought. First was the good news that her collected
stem cells came back cancer-free. The we just heard that Mary
Evelyn's friend here at the hospital, Taylor, who has been much
sicker than Mary Evelyn and has suffered much, just got
excellent test results. Taylor is free of cancer! It is a
miracle. Maybe today is a day for miracles.
Edna
|
|
TUESDAY, NOVEMBER 22, 2005 02:16 PM, CST
Mary Evelyn is in surgery right now.....
|
| Prayer is such an awesome thing!!! Not only are we rejoicing at the news of the stem cells being free of cancer; we're rejoicing too in the news from the surgical team that everything is looking good! They started around 2 pm and Edna will receive updates every hour. About 20-30 minutes ago the report was good |
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TUESDAY, NOVEMBER 22, 2005 12:00 PM, CST
|
| Good news! Mary Evelyn is in surgery right now
and we have a calm, hopeful spirit. We already have some good news to
share. Her stem cell test results show no cancer in the stem cells!!!!!! This opens the door for further treatment and is very important. Praise God! Edna |
Monday, November 14, 2005--No Cancer in her bones!!! (tumor still present...but now the operation for the tumor can take place!!!)
Mark and I roused a sleepy Mary Evelyn out of bed early this morning and took her to the hospital in her "jamblies". We hoped she would sleep in the car but she mostly loudly asked tearfully for something to eat or drink and kicked the back of my seat. We couldn't give her anything because she would need to be sedated later for one of the scans. So, it wasn't the best start.
When we got to the radiology department, the nurse, Miss Hilary, brought in a large drink for Mary Evelyn. It has the imaging fluids mixed with gatorade and evidently tasted disgusting. Mary Evelyn had a choice between drinking all of that or getting the fluids through a nose tube. She chose to drink it. It took over an hour. After every three ounces, Miss Hilary gave her a prize. She won: a sticker, a play watch, rubber frog, stretchy spider, squeeze ball, purple ring, noisy shaker, two bracelets and a little princess bear. She deserved every single one.
After the drink, she lay still while holding our hands for the CT scan. It took about fifteen minutes and she had to be perfectly still. Then, she was whisked over to another room for the bone scan. She had to be sedated for that because it takes an hour.
Mark and I took that time to go get lunch and talk over things. We talked about how we have to be ready to let her go. We know life is short for all of us and that this present life is not as important as what is to come. We both obviously want her to live and grow up and be with us, but we know that may not be what happens. We know we have to be grateful for whatever time we have with her and for her sweet spirit and gentle faith.
After lunch, Mark had a business call and I went to the garden to call my sister Jennie. We talked about a lot of the same things. I need to be thankful for the beautiful gift God has given me by the life ME has already had and to trust Him to take care of her now and always.
By this time, she had woken up. Not too happy. She was very hungry and the drug puts her in a rather agressive mood. We got her some lunch and went upstairs to the AFLAC clinic to wait to talk to her doctor. ME was wearing blue knit pants with a hospital gown on top and her silky tied around her neck like a cape. She was a sight! Her mood improved quickly and she was very happily playing with her new toys while waiting.
I left the room for a minute, and when I got back, Dr. Katzenstein was already talking to Mark. I walked in when he was saying something like this, " yes, it lights up at all the places where she still has cancer..." but they weren't talking about today's test. They immediately told me we had some good news.
Mary Evelyn's bone scans showed NO cancer in the hard part of her bones! He showed us the scans from June and the scans from today. In June, She had cancer in the top of her skull, behind her nose, and in sporadic places all through her skeleton. Now, she doesn't! This is what we were hoping to see. If the cancer were still in her bones, it would be a very bad sign. We are so thankful!
The CT scan showed that the tumor is still present, but much smaller and they expect to be able to remove most of it. It was very large before, so although it still looks big, it has shrunk a lot and is now below her kidneys so hopefully they will not have to remove any organs in order to get it out. We will be hearing from the surgeon, Dr. Ricketts, soon. The operation will be in the next week or so.
After the operation, she will have a MIBG scan and then the next steps will be determined from the results of the stem cell testing, the operation, and the MIBG.
Thank you for your love and faithful prayers. We would never have the strength bear this as well as we do if it weren't for you. I am so glad to share this happy news with you!
We are celebrating by having a Snow White movie party tonight, just the three of us. ME has promised to hold Daddy's hand during the scary part because, "I'm not afraid of anything."
* the Snow White party just significantly improved because my friend Karen and her sister just dropped by with a present for ME and a bottle of wine for me and Mark! I do feel like celebrating!
Sunday, November 13, 2005
Mary Evelyn points to a posted picture of herself at the healing service of the Sitka Icon. The picture is posted below....
Wednesday, November 2, 2005
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Sunday, October 30, 2005
A day and a half after her Healing Unction
Service before the Stika Icon of the Mother of God,
Mary Evelyn models her new coat and hat in church.
Friday, October 28, 2005...Sitka icon arrives at St. John...Healing Unction served...Mary Evelyn anointed 7 times...The Bible is placed over the head of Mary Evelyn as 7 priests pray for her healing.
Mary Evelyn meets the Mother of God of Sitka
Saturday, October 8, 2005...some good news!!!!
"Why does God bring thunderclouds and disaster when we want green pastures and still waters? Bit by bit we find, behind the clouds, the Father's feet; behind the lightning, an abiding day that has no night; behind the thunder, a still small voice that comforts with a comfort that is unspeakable." Oswald Chambers
Today We have some good news. Her urine test shows the chemical produced by the tumor has been cut in half again! It is almost down to normal levels!
Also, even though the bone marrow is not clear enough, it is showing progress and is expected to be clear by the next round! The cancer cells they do see are mature, which means they are benign. Nueroblastoma cells are benign if they mature.
Mary Evelyn is still throwing up a bit and then immediately asking for something to eat. She is happy to be home! She has IV fluids at night so one of us has to change a lot of diapers during the night. She is weak, but spunky.
We are so thankful. Thank you for your faithful prayers!
Love, Mark and Edna
Thursday, October 6, 2005
Mary Evelyn is getting her fifth round of chemo this week. It is a powerful one and very hard on her body.
But, it's also very hard on those cancer cells!
She had a bone marrow test on Tuesday. They were testing to se if it is free of cancer enough to harvest for the stem cell transplant.
The results of the bone marrow test were disappointing-it's not clear enough. We are not too discouraged, we still have more chances. But is is not the news we wanted.
I read something powerful last night in 2 Chronicles 20. King Jehosaphat is being attacked by many powerful armies. He can't possibly win on his own so he turns to the Lord for help. He decrees a fast throughout the land. All the men, women and children of Judah stood before the Lord. The spirit of the Lord came upon Zechariah and he said "Do not be afraid or discouraged because of this vast army. For this battle is not yours, but the Lord's..." When the army goes out, they lead with a large group of people singing praises to God. The army of Judah never has to fight. The other armies argue among themselves and kill each other.
They win a dramatic victory.
Sometimes I feel so helpless in the face of cancer. I can try to make her feel more cheerful, a little more comfortabe, cute, strengthened and all those really importaant things, but I can't make it go away.
Ultimately, only God can do that and it is a great way to see our true reliance upon Him. It also reminds me of the importance of being joyful in this time- being able to praise God even when a huge army is coming at you. Oh, and fasting...
The battle is really His.
Mary Evelyn has had a rough two days but is feeling better this evening. She woke up about an hour ago and threw up. Then she asked for goldfish crackers. She ate some crackers and drank some water. Now she is drawing in the playroom and listening to the Disney Princess CD. We will be here in the hospital at least until Saturday, probably Sunday.
Thank you for your continued prayers. We pray that the next test will bring better news. That test will be at the end of October, when she has her last round of chemo.
Love, Edna and Mark
Wednesday, September 28, 2005
Sunday, September 25, 2005 Prayers for Mary Evelyn with a piece of shirt worn by St. Nectarios.
Sunday, September 18, 2005 Prayers for Mary Evelyn when we wrapped the cord touched to the Mother of Gods' belt.
Sunday, September 18, 2005
Friday, September 16: We got up early to take a sleepy
Mary Evelyn to Egleston this morning. She wasn't too happy about it and covered
her face with her hands in the hallway. Once we were up on the third floor AFLAC
clinic, she brightened up. It always helps to see people she knows and today a
woman from the group Faith's Crossing was there giving out cookies and doing art
projects with the kids who were waiting.
Mary Evelyn had very low blood counts so she had a tranfusion and will need
another week of shots. This is not unusual for children in her condition. Her
next appointment is next Friday for routine blood work and the next chemo will
be the first week in October.
We had a longer than usual talk with the doctor. He specializes in nueroblastoma
and we are so grateful to have him working with us. He explained several things
to us, including the order of her treatment: she has two more rounds of chemo
during which time they will continue to monitor her bone marrow, looking for it
be essentially free of cancer. Once that is achieved, they can collect her stem
cells for reimplantation later. If the bone marrow cannot be cleared, they
can't continue with the normal course of treatment, and her chances are
diminished.
After the chemo rounds and stem cell collection are done, she will rest two
weeks and then come in for scans which will show where/if the cancer still
remains; the goal is for her to be in remission at that point. Once she is in
remission, surgery to remove what remains of the tumor would be the next step.
If all goes according to schedule, this would happen in mid-November. After she
recovers from the operation and her levels are strong enough, she will undergo
two proceedures to reinsert her stem cells which will replenish her bone marrow.
Each proceedure take at least 21 days with a few weeks rest in between. After
this, she will have two weeks of radiation. When that is finished, she will be
treated with acutane for six months. Acutane is a drug that lowers the chance of
relapse.
So far, she has made good progress. The latest test, taken after round 3 of her
chemo, shows her bone marrow 80% clearer than after round 2. That was very
encouraging to us. She needs to continue to improve, but according to our
doctor, we're looking good so far.
Relapse is one of the big worries. 30-40% of the children with her cancer who
are treated with her same protocol are free of relapses for five years after the
treament ends. The others either don't make it that far or have relapses. Those
with relapses have greatly diminished chances of ultimate survival. A relapse
can happen at any time but is most likely in the first two years after the
treatment ends.
We know that Mary Evelyn is God's gift to us, and each day we are thankful for
her. Just as He gave her to us against all odds the first time, if it is His
will, He will give her to us again at the end of this ordeal. This is teaching
us to live in the present, to appreciate each day as it comes and try to make
the most of it. Of course, there are times when you just try to have a normal
life and not think these kinds of thoughts at all. Living with a three year old
keeps us from becoming too intense about it because she's always being so silly-
like humming the theme from Beauty and the Beast while gliding down the stairs
in a pretty nightgown which she is holding out with one hand like it's a ball
gown or pretending she's her friend Orla. "I'm Orla," she will say as though you
have mistaken her for someone else.
Please continue to pray that the chemo is effective and that her bone marrow
will continue to clear up enough so that everything can proceed. Or an instant
miracle would be fine, too!
Monday, September 12, 2005
(from a member of our church sent to us today)
I wanted to tell you about two really good things that I think happened because of the Akathist to the Mother of God Healer of Cancer. Since you put it one the website, I have been trying to pray it everyday during the week at work for Mary Evelyn. The first time I read it, though, was when we were driving over to Birmingham for Danny's cousin's funeral last July. I had just read it as we were driving, and the last words, "deliver from afflictions those run to Thee; from all dangers do Thou guard Thy flock, who ever call upon Thine intercession" were still running through my head. Suddenly, on a part of the interstate was undergoing major construction, a big rig veered into out lane. Because of the construction, there was no median at all, only a cement wall. Despite Danny's honking, the truck continued to pull over. I remember closing my eyes, waiting for the impact, and the words from the Akathist were going through my head. All of a sudden, we came to about a twenty foot patch of median where the third lane that was being built had been completed. We were able to pull onto that isolated patch and let the truck pass. It was really amazing because it really was a small patch of completed interstate surrounded by miles of concrete walls.
The second thing happened just yesterday. My dad called me from Baltimore and said that two weeks ago he was told that his PSA was so high that there was a 90% chance that he had prostate cancer. They did a biopsy, though, and just last Friday, he was told that he didn't have cancer! I immediately thanked God for this news, but it wasn't until this morning that I realized that maybe the Akathist to the Healer of Cancer was helping him, too!
Being a scientist, I've thought a lot about your sermon of several weeks ago in which you implored us to be scientific as we pray. I think that this Akathist really works and will surely help cure Mary Evelyn.
Thursday , September 1, 2005
Queen of All Healer of Cancer Icon in Russia (picture taken by Elena Myers)
Hand Painted copy of the icon QUEEN OF ALL, HEALER OF CANCER bought in Russia and touched to the original icon in Russia and now in St. John the Wonderworker Orthodox Church
Update: On August 28, our Church received from Russia a hand painted copy of the icon the Queen of All the Healer of Cancer which was touched to the healing icon in Russia that has been so responsible for so many healings of cancer. Today the icon was placed in the Shrine near the Iconastasis. We also received oil from the oil lamp over the icon in Russia. Mary Evelyn unveiled the icon and received a blessing with the oil....The icon is above this note.
Monday , August 22, 2005 (afternoon)
We had some good news today. The urine test that she had last week came back with good results. This is the test that measures a chemical that is secreted by the tumor. This test was done last Monday, before the third round of chemo. It showed that the secretions have gone down by two thirds or more. There are two kinds. The VMA was 438 on 6/23, 273 on 7/25 and is now 112 as of 8/17! The HVA was 335 on 6/23, 263 on 7/25 and 100 on 8/17.
There are both in
the moderately elevated range which makes me happy because one of them used to
be massively elevated. We are so encouraged. This shows the chemo is effectively
fighting the caner so there is a lot to be happy about and the side effects like
throwing up are well worth it. So we are praying thankful prayers.
We are still in the hospital. We have to stay until Mary Evelyn can keep
something down. She is not able to do that right now. I'm sure she'll be better
soon.
At least she feels better. Thanks for your prayers.
In Christ, Edna
Friday, August 19, 2005 (afternoon)
Shortly after I e-mailed you this morning, I was
watching Mary Evelyn sleep and the cleaning lady came in the room. I've spoken
to her on most days of our visits and am always uplifted by her. She is one of
the blessings of being there. She asked me how Mary Evelyn was doing and I told
her about the throwing up and said she couldn't go home unless she felt better
and was able to keep something down. I added that being sick was to be expected
with this chemo. She said that I shouldn't expect Mary Evelyn to be sick, I
should expect her to be fine. After all, we know Who's
in charge. I agreed with her and felt much better.
When ME woke up, we
encouraged her to get dressed and take a walk. She wanted to sit on the AFLAC
duck again. So she walked down the hall to the radio broadcasting room. When
she walked in, Neil Boortz was on the air and he
said, "you should see the cutie walking in right
now, what's her name? Mary Evelyn".
So she got her 15 seconds of fame.
There was a delicious catered lunch from "Loving
Spoonfuls" and ME ate bread, strawberries and drank a big glass of iced
tea. She made a lot of friends today. She even sang "Happy Birthday"
with a group of people on air to Belinda, one of the the
co-hosts.
Belinda is very sweet and gave a piece of cake to Mary
Evelyn. I thought it was a remarkable recovery, but then, we know Who's in charge!
In Christ, Edna
Friday, August 19, 2005
I just saw the church's website- thanks for putting up
the photos.
I'm not sure if she'll go home today. She was throwing
up blood from the sores in her GI track and the nurse seemed worried. She's
sleeping now, and I hope she'll feel better. This chemo has a delayed reaction
so they expect her to be sick for a few days.
Thanks, Edna
Ps: Please tell everyone who sent meals how much we
loved them. They were such treats.
Friday, August 19, 2005
This has been a fun week to be at the hospital because
the WSB care-a-thon is being broadcast live from this floor and so there are a
lot of interesting people around and great food!
Mary Evelyn has done well with the chemo. This is the
intense round. She slept a lot on Tuesday, played a lot on Wednesday, slept and
threw up a lot on Thursday and maybe we'll go home today on Friday. Her doctor
said yesterday that she was doing well with the chemo, that
being sick is to be expected so I try not to get worried. She is on four
different medications to fight nausea. So we are thankful for the medicines and
hoping the tumor is getting hit hard. She has lost weight and so we can see it
again.
She had her bone marrow tested to see if it still has
cancer and the results showed that there still is cancer in it but it is
"different" and "better". They do not expect the bone
marrow to be free of cancer, it just needs to be at a
lower level than it is right now. They will test again in a few weeks and we'll
pray it continues to improve.This is normal for
children like her so we are not worried. The plan is to harvest stem cells from
her bone marrow/ blood and use them after radiation to bring her cells back.
It is also important that the tumor continues to
shrink. The children who survive this are the children for whom chemo is
effective. If the chemo doesn't shrink the tumor, they won't be able to remove
it and we'll have problems. So far, they believe it is shrinking.
Thank for your continued love and prayers. This week
has been a little harder for her and she has needed your prayers. It's
difficult to bring her in feeling fine and then watch her suffer, but we know it's well worth it. God will give her the grace she needs to
get through this.
Love, Edna
Thursday, August 18, 2005
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Sunday, August 7th, 2005
Yesterday as we were leaving the hospital we met a woman who was holding her tiny infant grandson. She started talking to us and told us what happened to him. She said that he was in the hospital because he had been unable to digest his food. She said that his life was in danger and that he was supposed to have an operation to remove all or part of his intestines. She was waiting for the operation in his room when she started to pray. She said that she asked God to heal him. She said that she wouldn't let Satan have her grandson. She said she was praying when the baby's belly started to shake. She said she didn't know what happened but that afterwards, the baby was able to digest his milk and did not neeed the operation. The doctor told her that it was a miracle. She said this hopsital is full of miracles and that she was praying most of the time she was here.
She then looked at Mary Evelyn and said she was
praying for her too. She said she felt a miracle coming for our baby. She said
that she felt God was doing something special for Mary Evelyn. She said we
needed to go home and put on the gospel channel on our TV and listen to T D
Jakes. Mary Evelyn listened carefully to everything this woman said. The woman
noticed this and said, "see, even your child
understands what I'm saying".
I thought about this later and realized that everything she said was
like the things the man said to me on the elevator a few weeks ago. I think
that what God means by saying we should be watching the gospel channel is like
what the man said about surrounding her with holiness. We have to preserve an
atmosphere of love, peace and holiness in our house and everywhere we take her.
Please pray for our family during this time. We are having some difficulties
and need extra prayer right now, today.
Love in Christ,
Edna
Friday, August 5th, 2005
Mary Evelyn, Mark and I came to the Akathist Service on Monday and it was really beautiful. I
have thought of it often since then and it is so comforting to know that you
are praying for us throughout this.
She seemed to be feeling really well in the beginning
of the week. On Wednesay, she had a playdate with several friends. We went bluberry
picking before going back to our house to play and eat fasting pancakes. She
had a ot of fun but asked
for a nap as soon as her friends were leaving. She seemed fine in the evening,
but before bed we noticed she felt warm. She had a fever in the "watch and
take it again in a hour range" which was 38.1 C.
An hour later it had risen to
"call and go to ER" range- 38.9 C which is 102 F. So we
called, got her out of bed and drove to Egleston at
12:30 in the evening. She said, " Hey, I'm
supposed to be in bed!" She was singing along to the music in the car,
even though she knew we were going back to the hospital.
It was emotionally hard to be back in ER because it
reminded us of the night we found out she has cancer.
However, God is gracious and Mary Evelyn seemed to be
having fun seeing her old friends. She was perky and enjoying being out so
late. Several staff members remembered her and were very kind.
She had to be admitted because of her fever and her very
low white blood cell count. She had almost no white blood cells. They also took
a blood culture to see if there is an infection.
The oncologist said that sometimes the body will have
a fever when it is busy rebuilding the cells after chemo. So, even the fever
can be a good sign and something to be thankful for. How often things that seem bad are really a sign of God's grace.
We will probably be here until Saturday. Her fever is
gone as of Friday and so far there is no sign of infection. We can go home when
her cell count is higher.
Love, Edna
Thursday, August 4th, 2005.
Mary Evelyn had a fever last night. It was 38.1 C and then rose in an hour to 38.9 C which is 102 F. Whenever a patient like Mary Evelyn has a fever of 38.7 she must go right to the ER.We called the hospital and brought her into the emergency room. It was about 12:30 AM. On the way, she said," Hey, I'm supposed to be in bed!".
She had been playing with friends, eating very well and acting fine all day. Even with her fever, she was friendly and pleasant to the staff in the ER. She had to be admitted because her white blood cell count was very low. Actually, the Dr. said it was very, very, very, very low. Of course, it is expected that they should be low after having chemo last week, but the fever could be a sign of an infection. They admitted her to keep an eye on her.
We got to our room around 3:00 and saw she'd be sleeping in a crib with metal bars all around and a clear plastic cover. I thought it looked like a cage. She thought it looked like a tent and was delighted. So, her positive attitude is really helpful.
Today, the oncologist came in and said that she looks great. He said that sometime the body produces a fever when it is building the cells back up. That kind of fever is normal and even a good sign because it shows the body is recovering. They will keep her to be sure that is what is happening with Mary Evelyn. I feel confident that she will be fine because she is so happy and playful.
Tuesday August 2, 2005
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Below is the outdoor shrine on the side of our church which is dedicated to the Mother of God where we are saying
an Akathist every day at noon of the Dormition Fast (week days) for the healing of Mary Evelyn.
Thursday, July 28, 2005 (evening)
(A nun from
Father I just went into the update of Mary-Evelyn and saw the new photos....firstly she is so cute, she looks much older than 3 years old and just adorable....and I'm still in shock to see her with the icon I painted of Saint John......I called the abbess to see the photos and she started crying....I believe she will get well, she has so many people praying for her, monks, nuns priests, lay people....we are all praying for her as well....I'm going to print that photo and put it in my room...I feel that she is so close to me, like I've known her for such a long time...
Thursday, July 28, 2005
(from Mom)
On Sunday, when Mary Evelyn went forward for us to pray for her healing, she
told me, "I gonna get all better!" with a
bright happy smile. Her faith is so strong. Thank you for praying for her and
loving her and our family so much! You have all made this so much better for
us.
Mary Evelyn's levels were strong on Monday so she has been getting her chemo
all week. Monday went well but Tuesday was difficult. She threw up a lot, even
in the car on the way to the hospital. Aunt Pam ( Mark's
sister) came around 11:30 just as I was getting frazzled after watching Mary
Evelyn throwing up so much. Pam stayed with her for a few hours while I went to
Leslie's house where we washed the car seat cover and all of the clothes from
the morning and then Leslie took me out to lunch at Murphy's in
When the nurse told Mary Evelyn it was time to go home, she said, " I can?" She was so delighted that she made a
quick recovery. She perked up and started talking to us. She walked all the way
to the car where she soon fell asleep. At home, she started eating right away.
There must have been someone praying a little extra because she improved
dramatically. She helped me make dinner and played wildly like a healthy child
all evening. She has been feeling much better ever since Tuesday evening. She
has been eating normally and doesn't seem to be suffering from the sores.
On Wednesday, she had a great time. She was playful with the nurses and visited
the hospital cafeteria for lunch. While she's getting the chemo, you can take
her out for walks by bringing along her IV on the pole.
That helps a lot because otherwise you are sitting in a little private
curtained off area inside a large room with about ten other cancer patients.
Each patient has two chairs, a table, sometimes a little window, and a little
TV. It's nice, but getting out helps.
This morning, she was sick again but improved when we gave her medicine for
nausea. Mark is spending the day with her today and I am home getting our house
back in order.
This has been a good week. Each day she has had a special visitor and I have
had a break. This keeps both of us feeling better. Tomorrow is the last day of
chemo for this round. Then we have a break for two weeks while her body
recovers. She will have four more rounds of chemo, then radiation, an operation
to remove the tumor and a bone marrow transplant. This whole process will take
about nine months.
The clinic has sent a urine sample off to be tested to see if progress is being
made in killing the cancer.
The cancer must shrink in order for them to operate later to remove the tumor.
We should get the results tomorrow or Friday. Mark reminded me today that the
doctors told us the ultimate success of her treatments does not depend on
progress being made right away. We are hoping for a good report, but we will
not be discouraged if they say something else. We are looking at the long term
results and we can handle short term disappointments if they come.
We are so grateful for all the people praying for Mary Evelyn. We know that God
is near in hard times. We can feel His love and grace through the love of those
around us.
Love, Edna
Wednesday,
July 27, 2005
Dear Father J.,
Evlogeite.
I am a young Greek Orthodox
priest who serves a parish outside of
In Christ,
+ Fr. .....................................
Sunday, July 25, 2005
King family after
Church with icon of
Mary Evelyn and some of the children in
the church with the icon of
Monday, July 18, 2005
I brought Mary Evelyn in to Egelston
this morning, but she was not able to get chemo this week because her platelet
levels were too low. She will go next week instead. The nurse assured me that this
is OK and normal. It is important that she recover from the first round before
they give her the second round of chemo.
As we were leaving the hospital, I called Mark to tell
him what was happening. A man on the elevator with me heard what I was saying
and asked me about Mary Evelyn's condition. His daughter, Nikki, is also in the
hospital and has some kind of nodules on her lungs. He told me about his
daughter and how she had almost died as an infant because she had a severe
heart abnormality. He described how he and his church prayed for her and how
she had been healed. He looked at Mary Evelyn and asked me if he could pray for
her.
I said yes and so he did. After he prayed he told me that she would be healed and that it would be a matter of weeks not months before we would stand in front of our church and glorif