September 17, 2007

Dear Friends and Family,

For all those who inquired about how Shannon and Michael made out with the Bone Marrow Transplant on Thursday, I apologize for not responding to anyone. We were a little overwhelmed for a few days and in order to remain peaceful through the storm I attended to only what was essential. I hope you all understand.

Michael’s marrow was harvested (that’s the word they use) Thursday morning. The procedure took about 30% of his total blood volume (this is an unusually large amount according to the staff) and left him quite nauseous with a below normal blood pressure. Through what I believe was divine consolation, the oncology floor had discharged a number of patients which left many empty rooms, including the one right next to Shannon. That became Michael’s room. He was admitted due to his inability to recover on his own and later that day he was given a blood transfusion to assist in his progress. By late Friday morning he was almost as good as new!

Shannon happily received the harvested marrow (adult stem cells) through a transfusion and as per tradition, the nurses celebrated it as her new birthday – Sept. 13th ! Thursday evening things got a bit stormy with Shannon’s lungs taking on fluid, thus reducing her oxygenation levels. Her alarm sounded all night, every 10 to 15 minutes, climaxing to the point where they were ready to admit her to ICU. Strangely, I was not afraid. These verses probably best explain how we often find ourselves calm amidst a storm.

The peace of God which transcends all understanding, will guard your hearts and your mind in Christ Jesus. Phil. 4:7

The disciples went and woke him, saying, "Master, Master, we're going to drown!" He got up and rebuked the wind and the raging waters; the storm subsided, and all was calm. "Where is your faith?" he asked his disciples. Lk 8:24-25

She was not admitted and recovered on her own, but remained bedridden.

By Sunday I encouraged Shannon to get out of bed, and as you can see from the pictures all it took was a little family excitement and a challenging game of baseball, golf, and bowling on Nintendo Wii. For the next two weeks it is expected that she will experience a great deal of discomfort in her mouth, stomach and GI tract. She has already been placed on intravenous nutrition because eating is so difficult. It is gravely important that she continue to take some small quantities of food by mouth, otherwise the potentially life-threatening Veno-occlusive disease (liver failure) can set in due to the high doses of chemo and immune-suppressant regimen that she has and is currently receiving. This week she will be given a morphine pump for pain control so that she can continue to eat. We are counting down the days through the 27th which is when the painful symptoms should begin to subside. Other varied Graft vs Host symptoms may onset by then, but we have learned to take one day at a time and believe that God will only give us what we can handle. So please pray that God safeguards her from permanent damage and assists us in being in the sacrament of the moment rather than fear of the future.

Although fear continues to try to invade us, we are seeing the miracles happen every day through God’s actions. Over the years my children remember the endless times I’ve said that God does not wave a magic wand, but rather his miracles occur through nature and the actions people, especially when they are open to his grace. Prayer, our own as well as those on our behalf, open us to a greater receptivity of grace. Fear, if we let it, can block our openness to see the miracles and can block or diminish the flow of grace. “Do not be afraid” occurs 65 times in the Bible, so our Lord knows this is part of our human weakness. The hospital can be a fearful place, but we have witnessed God’s power in so many ways.

A Bone Marrow Transplant carries with it fear but also hope. The pics below show our hope. Counter clockwise from upper right: Michael as he is awaiting surgery, Shannon beginning to receive the transfusion, Dr. Eric Schafer and Shannon’s nurses setting up the Bone Marrow for transplant, P.A. Cheryl - Bone Marrow Specialist, 1.2 liters of Adult stem cells from Michael, 3 days afterwards we finally got Shannon out of bed to play Nintendo Wii – baseball, bowling, golf.

Many have sent heart-warming poems, songs, scripture verses and more, all of which have been deeply meaningful to me. The link below is a song by Rascal Flatts called “Skin” depicting a girl diagnosed with Leukemia. It was recommended by one of Shannon’s friends from The Kick Connection and is something I wanted to share with all of you.

"Skin (Sarabeth)" (full length video)

God Bless,
Bonnie and Greg

9/3/07

Dear Family and Friends,

Thursday, Sept 6th is the beginning of the next phase of treatment for Shannon. It is probably the one we fear most because now we know from experience how debilitating the chemo can be – balance, coordination and muscle strength are robbed along with the ability to think clearly. When we entered into phase I we had no previous experience with chemo – that alone is a blessing. Even now the remnants of Vincristine and Danarubacine haunt us when we watch Shannon attempt to jog, fall when she looses her balance, and struggle just to place her feet moving in a heal to toe motion. Fear is manageable though with God’s grace. It is your prayers that help us open to his grace rather than open to the fear.

From Sept 6- 12 Shannon undergoes intense Chemotherapy, in preparation for the Bone Marrow Transplant, including full body radiation, both will induce multiple side effects, which could result in her placement into ICU or in the insertion of a temporary feeding tube. On Sept 13th Michael undergoes the Bone Marrow harvest and the same day Shannon receives it through a blood transfusion. Michael will experience some manageable pain for a few days and low energy for a month or so. Of course, Michael is our hero because he’s willing to step up to the plate and do whatever it takes to help Shannon.

A couple of weeks after the BMT Shannon will begin to experience symptoms of Graft vs. Host disease, which can be quite severe. In thinking about the side effects of the chemo and the GvsH disease it becomes easy to slip into anxious apprehension. There is a scene in The Passion of the Christ that has lodged in my head since we began this battle with cancer and comes to mind each time I feel myself slipping. Mary, at the foot of the cross, distraught, with a tear stained face, fiercely clenches sand and pebbles so that she is white-knuckled. Then in her grief and sorrow, she peers heavenward, her hands open, sand and pebbles fall through her fingers to the ground. She empties herself; is full of grace and the presence of God is with her. Emptying oneself to allow God in is an image that has helped me accept what I cannot change.

These pictures of Shannon resonate with images of what we can change – the effects of the chemo. After a weekend of the simple beauty of His creation, we are ready to move forward. Sincerely, we ask you to continue your prayers that we will Trust in God, and be open to his grace as Mary was.

God Bless,
Bonnie and Greg

Note from the blog editor:

I wanted to add one of my favorite scriptures here for Shannon and her family... Claudinne

Romans 5:1-5
We have been made right with God because of our faith. Now we have peace with him because of our Lord Jesus Christ. Through faith in Jesus we have received God's grace. In that grace we stand. We are full of joy because we expect to share in God's glory. And that's not all. We are full of joy even when we suffer. We know that our suffering gives us the strength to go on. The strength to go on produces character. Character produces hope. And hope will never let us down. God has poured his love into our hearts. He did it through the Holy Spirit, whom he has given to us.

August 24

Dear Family and Friends,

 

John's Hopkins has changed Shannon's admission to Sept 6th rather than Aug 30th.  This delay will allow her a much needed extended mental health time, more time to boost her immune system, work on liver cleansing, and the extra time needed to regain more of her muscle tone. Again I see this as God's intervention in allowing Shannon to enter this last phase in better health. 

 

A request - does anyone have the DVD Anne of Green Gables or the other ones in this series that we could borrow?  We were introduced to these by a lovely family staying at J.H. the same time we were and let us borrow theirs. Shannon and I just started watching it during the last couple days of our last stay and found them very charming.

 

Thank you for all your prayers and continue to pray that God will succeed in His interventions into Shannon's treatment!

 

God Bless,

Bonnie

August 22, 2007

Dear Friends and Family,

After ending up in the hospital last Thursday with a rather serious fever from a transfusion, we planned to settle in at Hopkins for the next 10 days / 2 wks until Shannon’s white blood cell count recovered. Well, 4 days later, Monday night, Shannon was discharged. God is amazing!

With her counts up and looking very healthy, the decision has been made to admit Shannon on August 30th for the Bone Marrow Transplant. We proceed with joy, but also with trepidation and anxious hearts because soon we will know whether she has been cured. The first week (next Thursday) begins with aggressive chemo treatments. The transplant follows, then the difficulty (assuming there’s no serious infection) is one of enduring the potential severity of Graft vs. Host disease. Shannon’s hospitalization will continue for approximately 6-8 weeks, during which time either Greg or I will stay with her 24-7 due to the bodily and mental stress that she’ll endure.

Please pray that her body is clear of cancer after the transplant. Due to the aggressive and deceptive nature of her cancer there is the possibility that it will reappear again quickly. If it does, the treatment will be decided at that time and we will place ourselves at the mercy of our Lord as we have tried to do so far. It is quite difficult for us to face the reality of soon knowing which path her cancer will take. Our hope is that the Lord has many future plans for Shannon and for the rest of us (including all of you) who are walking this journey with her. As parents we must not be as the Rich Young Man and walk away sad after Jesus lets us know what we must give away. Rather we must give away our dreams and allow God to reveal his plan for us. Pray that God has a significant plan for Shannon to participate in His apostolic works through the Church and that we too will have the courage to give part of ourselves away so that God’s plan can be brought to fruition through us in what ever vocation we have been given.

Here is Shannon enjoying God’s blessings through the tender and constant care of her nurses. Note: Jesus in the Divine Mercy image watching over Shannon’s shoulder as she studies. (Dr. “D” – she’s writing her World Literature short essays!). As you can see by her joy we have found the presence of God through so many people that he has brought into our lives! Each and every one of you, through your prayers and other kind gestures have revealed the living Body of Christ.

Thank you for all your prayers.
God Bless,
Bonnie and Greg

July 2007

Friends and Family,

God hears your prayers for Shannon! Thank you everyone!

Last week, 2 days prior to our scheduled clinic visit for chemo, our doctor (Dr. Eric) phoned and said ... he just had to call because he had several emotional experiences this day over blood results and couldn't wait for our visit. Additionally he wanted to assure us that these results were not of his doing but clearly God's hand.

The 2 pieces of good news he shared were 1) Shannon's cancer cells had gone from 45% to 1% (totally unexpected reduction in such a short period) and 2) one of family members is a matched donor (the odds were heavily against this)! I could go into a lot of scientific jargon to explain how incredibly good this news is, but the bottom line is that Shannon's cancer is so aggressive that time could be our enemy, so this is a miracle!

In this race against time, this is the first of several hurdles that we must clear. The next is for Shannon to continue to endure the high intensity chemo that's causing hair loss, weight loss, and many other unpleasant side effects. Those to come are the need for her to be in complete remission just prior to her bone marrow transplant, then her body's acceptance of the bone marrow graft (which will be as grueling as her chemo), and finally our ability to complete the first half of her senior year through home schooling.

Please continue your prayers for the hurdles to come and for Shannon to be able to tolerate her chemo. We've recently had several really bad chemo-days.

Through this experience we have come to see the presence of Christ in all of humanity, not just in the goodness of all of you but literally in all people, and have realized how blind we had been to this truth in the past. The blessings being poured over us daily still leave us amazed.

Attached is a photo of Shannon with her doctors - Dr. Arceci on the left (Shannon calls him St. Francis) and Dr. Eric Schafer on the right (known by Shannon as 'J.D.', the doctor on "Scrubs")

Shannon update July 8

Here is Shannon's senior school portrait taken on 6/29 in the Johns Hopkins Children's Oncology Play Room seven days after her diagnosis. She has written the following prayer to you to be placed with her picture. Thank you for your prayers and support during this difficult time. It's truly made a positive impact on my healing process, spiritually & physically. I just ask that you don't forget to keep my doctors & me in your prayers especially over the next few months.


As Shannon's chemo is starting to have it's difficult side effects, she has asked that you pray for the intercession of St. Faustina. Shannon has had a special devotion to the Divine Mercy for the last 2 yrs. Audrey (a young saint who is being considered for Beautification), a little girl who died of leukemia, and influenced the vocation of a man who is now a priest, was requested to intercede for a friend of ours who was cured of leukemia a few yrs ago, and we believe was aided by her intercession. Please consider additionally asking for her intercessions.


God Bless,
Bonnie and Greg

Shannon's update July 4 2007

July 4, 2007

Dear Friends and Family,

This is the first time I've had an opportunity to personally let everyone know of Shannon's leukemia diagnosis.

She was diagnosed on June 22nd with a very aggressive type of leukemia. She's currently received 5 blood transfusions, bone marrow aspirations, and surgery. Her leukemia is rare and there is no track record for a cure. The docs at Johns Hopkins have discussed her case with others around the world and have planned 90 days of aggressive chemo and radiation followed by a bone marrow transplant. They say, "if all goes as they hope" their plan will be a cure. We are placing this in God's hands.

We have experienced so many blessings prior to this diagnosis, which we have just begin to realize, and each in their own way prepared us for this journey. Daily we experience many blessings through the people and events around us. We realized there is never "nothing happening" around us, but rather God is constantly working miracles all the time, we have just been too blind to see them.

Her first blood analysis (day 8) since the start of treatment showed wonderful results - we believe this is due to the multitude of prayers. All your prayers we have felt as though a blanket of peace has descended upon us despite our feelings of fear. Please don't forget to pray for Shannon as the next 80+ days are most critical.

I will continue to try to update everyone, but please pass this along to all those whom I have missed.

God Bless,

Bonnie and Greg